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Medical Forum / Diseases and Disorders / Breast Cancer / July 2008Oncotype DX: How much influence?
Yesterday the surgeon called with my Oncotype DX score....25. This is smack dab in the middle of intermediate recurrence risk. I see 51 percent of women are in the low risk group, score under 18. 22 percent are in my group. So it's not such a great score. 14.3 percent risk of recurrence within 10 years, 68 percent survival rate. The doctor was hinting around about chemo before radiation. I told her I can't do both, and I mean it. It's been very hard to psyche up for radiation. If I'm going to do it, I have to get it over with ASAP. It's been impossible to arrange anything with the chemo doctor because he's in the fire holocaust of Paradise, California. The hospital and a quarter of the town were evacuated last week. Also, the doc said I'd probably be prescribed Arimidex, and described the side effects. I told her I'm already having hot flashes so intense they nearly make me faint, and serious dental bone loss. Are any of you taking Arimidex, and how bad is it? Has Oncotype DX had much influence on treatment? Les Hi Les, I'm really sorry to hear about the worries raised by your Oncotype score :-( I can't advise you one way or another regarding chemo. It's a question of lowering that 14.3 % rate of recurrence. You can have 2 kinds of recurrence, local (in the remaining breast tissue, lymph nodes, chest wall) or distant (bone, lung, liver, etc). Radiation /only cuts your risk of local recurrence/, while /chemo will cut your risk of any kind of recurrence/. In other words - radiation and chemo are 2 very different kinds of treatment. I did both chemo and radiation this past year. Feel free to ask any questions you may have, either here or via e-mail. I take Tamoxifen, not Arimidex, so I can't say anything about Arimidex. I both dreaded and resisted Tamoxifen, because of the possible side-effects, but I actually have very few. Be well, Les. Ixia > Yesterday the surgeon called with my Oncotype DX score....25. This is > smack dab in the middle of intermediate recurrence risk. I see 51 [quoted text clipped - 16 lines] > > Les do you know what your oncotype dx score was? Hi Les, I'm really sorry to hear about the worries raised by your Oncotype score :-( I can't advise you one way or another regarding chemo. It's a question of lowering that 14.3 % rate of recurrence. You can have 2 kinds of recurrence, local (in the remaining breast tissue, lymph nodes, chest wall) or distant (bone, lung, liver, etc). Radiation /only cuts your risk of local recurrence/, while /chemo will cut your risk of any kind of recurrence/. In other words - radiation and chemo are 2 very different kinds of treatment. I did both chemo and radiation this past year. Feel free to ask any questions you may have, either here or via e-mail. I take Tamoxifen, not Arimidex, so I can't say anything about Arimidex. I both dreaded and resisted Tamoxifen, because of the possible side-effects, but I actually have very few. Be well, Les. Ixia On Jul 13, 11:43 am, downwinder <desertny...@cwo.com> wrote: > Yesterday the surgeon called with my Oncotype DX score....25. This is > smack dab in the middle of intermediate recurrence risk. I see 51 [quoted text clipped - 16 lines] > > Les > do you know what your oncotype dx score was? No, I don't. It was always a given that I would have chemo - large tumor, positive lymph nodes, triple positive. Bc treatment was very difficult, but I'm very grateful for it, and for the staff who delivered it. Ixia >Are >any of you taking Arimidex, and how bad is it? I'm taking Arimidex and have been on it for 2 years now. The only side effect I get is the one which worsens joint paint and arthritis, but that's bad enough! I had already passed through the menopause when I was diagnosed.  Signature"It's easier to get forgiveness than permission." Rear Admiral "Amazing" Grace Hopper > Also, the doc said I'd probably be prescribed Arimidex, and described > the side effects. I told her I'm already having hot flashes so > intense they nearly make me faint, and serious dental bone loss. Are > any of you taking Arimidex, and how bad is it? Has Oncotype DX had > much influence on treatment? --------------- I have been taking Arimidex for 3 years. I also have terrible dental problems; Arimidex has not worsened them. I think you might be mixing it up with Fosamax or similar anti-osteoporosis drugs. Those are the ones that can cause osteonecrosis of the jaw. Arimidex has worsened my hot flashes, but I put up with them. It has also caused joint pain, but that was worse when I first started taking it. Either it's lessened by now, or else I've just gotten used to it. About the most obnoxious side effect--I've mentioned this before--is that, being an estrogen blocker, it makes sex very difficult. If you need it, take it. This is your life we're talking about here. Side effects are nothing compared to other drugs. Eva the arimidex will halve that 14% recurrence rate. Chemo would surely reduce it more but....I'm with you, that's a tough one to move toward. ;-( I don't know my oncotype because as I understand it the cost is $3000 or so? not sure my insurance pays. I wondered if I would even WANT to know. if it were good yes, but if it were bad, do I want to know? I'm post-menopausal and got Letrozole script rather than arimidex. I don't imagine the hot flashes will get better on either med ;-( I don't have them but I know they are very bad for you. I'm so sorry about all this difficulty and anxiety and fear and discomfort. > Yesterday the surgeon called with my Oncotype DX score....25. This is > smack dab in the middle of intermediate recurrence risk. I see 51 [quoted text clipped - 16 lines] > > Les les, I thought you were in the lowest risk group (see below): did I forget something? http://www.breastcancer.org/treatment/chemotherapy/new_research/20060126.jsp > Yesterday the surgeon called with my Oncotype DX score....25. This is > smack dab in the middle of intermediate recurrence risk. I see 51 [quoted text clipped - 16 lines] > > Les > les, I thought you were in the lowest risk group (see below): did I forget > something? [quoted text clipped - 21 lines] > > > Les Les, I tried to run your statistical benefit from chemo on adjuvant.com, but the one that uses oncogene dx is temporarily off line. When I got my results (12)--they gave me a graph, derived from the Bernie Fischer data that predicted my distant recurrence rate based on the score. You should be able to see that graph. When Adjuvant.com is back on line it will give you the rate of decreased risk of distant recurrence should you opt in for chemo or out: the absolute risk reduction may just not make any sense for the risk. It would be best to talk to your medical oncologist. But everyone has a right to to decide for themselves, and all treatments carry risks as well as benefits. Good that your radiation course is so short: mine is longer and I count the days. Judy 12 is about as low as one could get, so that's extremely good news for you! Yet I guess some women would opt for chemo even in that group. was your tumor E+, HER2neg, grade 1, node neg and smaller than 1 cm? On Jul 13, 10:45 pm, "pumpkin" <billowr...@att.net> wrote: > les, I thought you were in the lowest risk group (see below): did I forget > something? [quoted text clipped - 25 lines] > > > Les Les, I tried to run your statistical benefit from chemo on adjuvant.com, but the one that uses oncogene dx is temporarily off line. When I got my results (12)--they gave me a graph, derived from the Bernie Fischer data that predicted my distant recurrence rate based on the score. You should be able to see that graph. When Adjuvant.com is back on line it will give you the rate of decreased risk of distant recurrence should you opt in for chemo or out: the absolute risk reduction may just not make any sense for the risk. It would be best to talk to your medical oncologist. But everyone has a right to to decide for themselves, and all treatments carry risks as well as benefits. Good that your radiation course is so short: mine is longer and I count the days. Judy > 12 is about as low as one could get, so that's extremely good news for you! > Yet I guess some women would opt for chemo even in that group. was your [quoted text clipped - 48 lines] > > - Show quoted text - Thanks Gals, Sounds like Arimidex may not be so bad, though I really wonder why someone like me, whose estrogen levels are obviously close to zero, should need it. I've been in the world's worst menopause for three or four years now, and took estradiol (oh how I miss it) for two years because of it. The hot flashes are bad enough, but the worst part is that I can't sleep. With estradiol I slept 5 to 6 hours; without it I only sleep 3 to 4. It makes me feel like I've got a bad hangover and makes coping so much harder. I'm wondering if they measure hormone levels at the medical oncologist's. Judy, thanks for trying to get that data. I'm too far away from the doctor to get a graph. I see Oncotype is also supposed to give more exact ER-PR info. I just heard those were plus 3. I make the trip to the radiation doctor Thursday for the third preliminary appointment. Wonder if she can tell me whether chemo or radiation would do me more good. Pumpkin, I haven't looked at your links, but I'm in the intermediate Oncotype DX group. Eva, my logic of thinking anti-hormone therapy thins bones is the drop in estrogen. I read that doctors often prescribe Fosamax or its ilk along with anti-hormone therapy. As I've said before, I still have a sex life; losing that one last joy might push me over the edge. Les "downwinder" <desertnymph@cwo.com> wrote in message news:7ca4eac1-8324-47a7-bb21- > ... As I've said before, I still have a sex life; losing that one last joy might push me over the edge. Les, your life is more important than your sex life. All through my bc treatment (no idea what the medication was) our lovemaking wasn't affected. Afterwards it wasn't affected. My husband's 95% (perhaps) impotence after his radical prostatectomy was a great sadness to both of us - but at least he was alive. That was far more important than anything else. You'll learn to adjust to whatever happens and be happy that you have the ability to do so - that is, you're still alive. Please don't panic about what might not happen, Hugs, Mary who has no idea what an Oncotype DX score is, never mind what mine is/was :-) Sometimes ignorance can be bliss! Hi Mary, Oncotype DX is validated for use in breast cancer patients whose disease is: Newly diagnosed : Stage I or II Node-negative Estrogen receptor-positive Oncotype DX now offers clinical experience information for newly diagnosed women who are post-menopausal and have node positive, estrogen receptor positive breast cancer and who will be treated with tamoxifen. It helps the decision to give chemo in boarderline cases. http://www.genomichealth.com/oncotype/about/hcp.aspx Alex thanks for this. Not sure why they didn't do the oncotype with me, you'd think they would have wanted the money. they didn't ask if insurance covered it. > Hi Mary, > [quoted text clipped - 13 lines] > > Alex Les wasn't a candidate for tamoxifen, though? the site says studies for "other populations" are underway. so I'm not sure the oncotype score is as valid for...oh heck, I don't know. it's all so overwhelming. > Hi Mary, > [quoted text clipped - 13 lines] > > Alex > "downwinder" <desertny...@cwo.com> wrote in message > [quoted text clipped - 23 lines] > who has no idea what an Oncotype DX score is, never mind what mine is/was > :-) Sometimes ignorance can be bliss! I think it's also important to remember that sex life doesn't have to be a black/white, yes/no proposition based only on vaginal intercourse or on penetration. Holding and cuddling and kissing can be very satisfactory, also such things as showering together. My husband and I gave up on sex per se in 2001 after my endometriosis surgery both because of abdominal discomfort on my part and because of his increasing immobility due to osteoarthitis. But we remained physically affectionate and this was a great comfort to us both. Linda Scheimann > > "downwinder" <desertny...@cwo.com> wrote in message > [quoted text clipped - 36 lines] > > - Show quoted text - Thanks Linda and others for the thoughts about changes in our sex lives. Things already have changed over the years. This time of life is so full of hardships, but most are temporary. We're almost to four weeks of thick smoke now. It went away for three days and came back at 4 a.m. last night. By November the rainy season will start. Heard that the cops are looking for the people who are setting fires. Bush flew over the area yesterday with Schwarzenegger, how brave of them. I went to my final preliminary radiation appointment yesterday. No crying this time, reflecting how much easier it is to be sane when you're not choking on smoke. I'd begged the doctor to somehow miss my lungs because that cancer is so common in my family, but she said that's not possible. First treatment is Monday, so my dream of having it all over with by my birthday August 26 will probably come true. The best birthday present ever! As far as how I feel about my doctors, I've long feared and mistrusted them. I know it's not their fault but so much of what they do feels like torture. Since I'm reluctant to go ahead with much of the treatment, they go out of their way to scare me with death threats and nightmare scenarios. The radiation doctor went into such gory detail, about how my ribs might fracture, I'd have secondary cancer risk, the burning, the fatigue, etc. ad nauseum. When I got home from the trip to the cancer center, a message was waiting from the third oncology office I've been assigned to. It's right next door to the place I traveled to yesterday. I decided I'm not making that trip again till the radiation's over. I've been warned that they'll tell me to do chemo, but that's not happening. I can't listen to any more death threats for a while, and it has to be cooler weather before I start drugs that could make my severe hot flashes worse. I'm looking for laughs wherever I can find them; have caught some very funny movies. Judy, I hope you can get a handle on your axillary web/ lymphedema. That's one problem I've managed to skip completely. I can see that's something to be very thankful for. > I think it's also important to remember that sex life doesn't have to > be a black/white, yes/no proposition based only on vaginal intercourse > or on penetration. Holding and cuddling and kissing can be very > satisfactory, also such things as showering together. My husband and I > gave up on sex per se in 2001 after my endometriosis surgery how does endometriosis impact fellatio? Not to get too graphic but.... OK, I already did. But I think everyone here is over 21..... both > because of abdominal discomfort on my part and because of his > increasing immobility due to osteoarthitis. But we remained physically > affectionate and this was a great comfort to us both. bravo. Thanks Linda and others for the thoughts about changes in our sex lives. Things already have changed over the years. This time of life is so full of hardships, but most are temporary. We're almost to four weeks of thick smoke now. It went away for three days and came back at 4 a.m. last night. oh I am really REALLY sorry to hear that! ;-( By November the rainy season will start. Heard that the cops are looking for the people who are setting fires. Bush flew over the area yesterday with Schwarzenegger, how brave of them. if only Bush had succumbed to...oh never mind, wrong place for fthis. As far as how I feel about my doctors, I've long feared and mistrusted them. I know it's not their fault but so much of what they do feels like torture. Since I'm reluctant to go ahead with much of the treatment, they go out of their way to scare me with death threats and nightmare scenarios. The radiation doctor went into such gory detail, about how my ribs might fracture, I'd have secondary cancer risk, the burning, the fatigue, etc. ad nauseum. seems unnecessary, but maybe it's better than Pollyanna doctors who pooh-pooh everything. My surgeon was like "Sure, no big deal" about reconstruction, and it is a VERY big deal. My first surgeon was "no big deal" about mastectomy instead of lumpectomies; but it is a VERY big deal. Both reconstruction surgeons I consulted were all rah-rah about making everything perfect and gorgeous. AFTER the fact, one said "Well, we knew there was a 25% chance of this" and I said "We did?" he never told me. nor did he listen when I tried to tell HIM things. I'm looking for laughs wherever I can find them; have caught some very funny movies. Judy, I hope you can get a handle on your axillary web/ lymphedema. That's one problem I've managed to skip completely. I can see that's something to be very thankful for. laughing is great, dancing if you're physically able...I play my beloved Roland keyboard and sing...I am lucky I have my kid for medicine. we laugh together constantly. and helping other people is GREAT GREAT therapy, I look the people I counsel every day and think "Would I trade my problems for his/hers?" and I think "Nope, nor would I trade for the problems I had 15 years ago." so.....inhabit the moment as best you can. You are a soldier even if you didn't choose this combat, and you're out of the bunker and going forward (OK, I hate militaristic/war analogies, but....)....doctors be damned! > > I think it's also important to remember that sex life doesn't have to > > be a black/white, yes/no proposition based only on vaginal intercourse [quoted text clipped - 58 lines] > going forward (OK, I hate militaristic/war analogies, but....)....doctors be > damned! About Bush flying over, I was thinking he probably tied up the airport and kept the tankers and helicopters down. So the next day it's all flared up again. It's the same everywhere he goes. Looks like there's a serial arsonist at work. There was one last summer too, but he was lazy and only set small fires. It turned out to be a fire official. He managed to hang himself in jail--far too easy a fate for a firebug. The smoke disaster has made life a lot harder. Everyone in the county is depressed; our throats are too raw for much talking. We're stuck inside, it's broiling hot, and those of us with swamp coolers can't use them because they suck in smoke. My therapy is reading books about climbing Mt. Everest; a little frostbite sounds nice right about now. Les The smoke disaster has made life a lot harder. Everyone in the county is depressed; our throats are too raw for much talking. We're stuck inside, it's broiling hot, and those of us with swamp coolers can't use them because they suck in smoke. My therapy is reading books about climbing Mt. Everest; a little frostbite sounds nice right about now. you sound like me closing all my blinds and playing thunderstorm tapes when it's sunny outside, pretending it's November. just yesterday I heard about a woman who had outpatient surgery at "my" first hospital and later died; the stitches got infected. I feel lucky to have emerged alive from that hospital. There were at least two dozen horrific infractions, and I got so so sick 10 days later because of the omission of simple handwashing. I do wish, Les, that you could zip off to Iceland. it does sound unbearable where you are, and here where I am it's clear, crisp, and 69 degrees. ... The smoke disaster has made life a lot harder. Everyone in the county is depressed; our throats are too raw for much talking. We're stuck inside, it's broiling hot, and those of us with swamp coolers can't use them because they suck in smoke. My therapy is reading books about climbing Mt. Everest; a little frostbite sounds nice right about now. Les I'm not gloating, honestly, but a week tomorrow we'll be on our way to the Arctic :-) I'll think of all of you, Mary Sounds like Arimidex may not be so bad, though I really wonder why someone like me, whose estrogen levels are obviously close to zero, should need it. I wonder that too, except that it does more than eliminate estrogen; it's a different chemistry. Tamoxifen, for example, can cause SYMPTOMS consistent with menopause, but it doesn't actually CAUSE menopause. that's what I was told. I've been in the world's worst menopause for three or four years now, not sure about world's worst. My sister used to have near-hysterical attacks during which she wanted to stab her husband. and took estradiol (oh how I miss it) for two years because of it. The hot flashes are bad enough, but the worst part is that I can't sleep. With estradiol I slept 5 to 6 hours; without it I only sleep 3 to 4. It makes me feel like I've got a bad hangover and makes coping so much harder. I assume you've talked to the docs about sleep aids? I know it's daunting to add yet more "stuff" to the mix, but sleep is important (sorry if I sound patronizing)....the natural stuff might not work for you. I am so sorry you are dealing with that. If I get too little sleep I am prone to crying over nothing. Judy, thanks for trying to get that data. I'm too far away from the doctor to get a graph. I see Oncotype is also supposed to give more exact ER-PR info. I just heard those were plus 3. I never had the oncotype test, it wasn't suggested. I am going to ask if it can be done now, a year+ later, but I'm not sure I want to know. I make the trip to the radiation doctor Thursday for the third preliminary appointment. Wonder if she can tell me whether chemo or radiation would do me more good. the studies I looked at suggested either both, or radiation alone....I don't think chemo alone was recommended for anyone but I might be wrong. Pumpkin, I haven't looked at your links, but I'm in the intermediate Oncotype DX group. I know. I thought your cancer was Stage 1 and all the good markers HER2neg, Estrogen+, well differentiated, good Nottingham scores. > 12 is about as low as one could get, so that's extremely good news for you! > Yet I guess some women would opt for chemo even in that group. was your [quoted text clipped - 46 lines] > count the days. > Judy Pumpkin, with an oncotype dx score of 12, they give a 7.9% chance of distance recurrence. There's a graph and you run the number from the graph and it gives the percentage. Chemo would lower the recurrence rate about 50% I think (I had the figures on adjuvant.com, but it's they're rolling out a new version for oncotype dx, and it's not available right now), so the 3.5% reduction was not considered significant enough to merit the risks of chemo. Tamoxifen is a given, though, for at least 5 years. My tumor was a bit bigger than 1 cm, but node neg, ER 3+/PR3+/Her-. The most annoying thing is that I got an axillary seroma after the SNB, and cording of the arm, and it led to a puffy hand, that is just starting to respond to therapy. I've had some really bad lymphedema therapy at the breast health center--very expensive ($360/hr and I have a big co pay) for the massage therapist to do a brief massage and the first woman was flakey and did terrible bandaging and no instruction in self care, and they switched me to a nasty male therapist who spent the whole time arguing with me and reversing his decisions through out the session--"Wear a compression sleeve" "No, don't wear a compression sleeve." "You can not have lymphedema because your measurements are equal and it NEVER starts in the hand." "You need to come in three times a week because you have hand lymphedema." Imagine this all said in a continuous loop, while you are naked and being pushed around, literally, by this guy. I found a very talented, compassionate woman who is in private practice and made a 90 minute house call--and refused payment--to help me out this weekend, and she will start to see me on a regular basis when her office opens in two weeks. Radiation is slowly progressing: down 13 of 35 total (28 regular/7 boost). The therapist did tell me to avoid mosquitos, and they love me, because the puffy hand started after a bunch of nasty bites on the wrist that I got at my friend's beach house. I went to show my daughter how to put up our tent, and one landed right on the puffy hand! And got me further up the arm. Between radiation and avoiding the bugs, it's not been a really enjoyable time. But, the big picture could be a lot worse. It's the day to day stuff that is not enjoyable right now. Judy yes, I had seen your story before, so sorry about the axillary problems, soooo sorry. but is that 7.9% recurrence an ANNUAL chance...I was told I had a 1% chance of recurrence per year, so 30% chance if I lived 30 more years.... but I didn't get the oncotype. On Jul 14, 1:22 pm, "pumpkin" <billowr...@att.net> wrote: > 12 is about as low as one could get, so that's extremely good news for > you! [quoted text clipped - 50 lines] > count the days. > Judy Pumpkin, with an oncotype dx score of 12, they give a 7.9% chance of distance recurrence. There's a graph and you run the number from the graph and it gives the percentage. Chemo would lower the recurrence rate about 50% I think (I had the figures on adjuvant.com, but it's they're rolling out a new version for oncotype dx, and it's not available right now), so the 3.5% reduction was not considered significant enough to merit the risks of chemo. Tamoxifen is a given, though, for at least 5 years. My tumor was a bit bigger than 1 cm, but node neg, ER 3+/PR3+/Her-. The most annoying thing is that I got an axillary seroma after the SNB, and cording of the arm, and it led to a puffy hand, that is just starting to respond to therapy. I've had some really bad lymphedema therapy at the breast health center--very expensive ($360/hr and I have a big co pay) for the massage therapist to do a brief massage and the first woman was flakey and did terrible bandaging and no instruction in self care, and they switched me to a nasty male therapist who spent the whole time arguing with me and reversing his decisions through out the session--"Wear a compression sleeve" "No, don't wear a compression sleeve." "You can not have lymphedema because your measurements are equal and it NEVER starts in the hand." "You need to come in three times a week because you have hand lymphedema." Imagine this all said in a continuous loop, while you are naked and being pushed around, literally, by this guy. I found a very talented, compassionate woman who is in private practice and made a 90 minute house call--and refused payment--to help me out this weekend, and she will start to see me on a regular basis when her office opens in two weeks. Radiation is slowly progressing: down 13 of 35 total (28 regular/7 boost). The therapist did tell me to avoid mosquitos, and they love me, because the puffy hand started after a bunch of nasty bites on the wrist that I got at my friend's beach house. I went to show my daughter how to put up our tent, and one landed right on the puffy hand! And got me further up the arm. Between radiation and avoiding the bugs, it's not been a really enjoyable time. But, the big picture could be a lot worse. It's the day to day stuff that is not enjoyable right now. Judy and isn't the 7.9% risk calculated BEFORE (without) tamoxifen, which cuts that in half? On Jul 14, 1:22 pm, "pumpkin" <billowr...@att.net> wrote: > 12 is about as low as one could get, so that's extremely good news for > you! [quoted text clipped - 50 lines] > count the days. > Judy Pumpkin, with an oncotype dx score of 12, they give a 7.9% chance of distance recurrence. There's a graph and you run the number from the graph and it gives the percentage. Chemo would lower the recurrence rate about 50% I think (I had the figures on adjuvant.com, but it's they're rolling out a new version for oncotype dx, and it's not available right now), so the 3.5% reduction was not considered significant enough to merit the risks of chemo. Tamoxifen is a given, though, for at least 5 years. My tumor was a bit bigger than 1 cm, but node neg, ER 3+/PR3+/Her-. The most annoying thing is that I got an axillary seroma after the SNB, and cording of the arm, and it led to a puffy hand, that is just starting to respond to therapy. I've had some really bad lymphedema therapy at the breast health center--very expensive ($360/hr and I have a big co pay) for the massage therapist to do a brief massage and the first woman was flakey and did terrible bandaging and no instruction in self care, and they switched me to a nasty male therapist who spent the whole time arguing with me and reversing his decisions through out the session--"Wear a compression sleeve" "No, don't wear a compression sleeve." "You can not have lymphedema because your measurements are equal and it NEVER starts in the hand." "You need to come in three times a week because you have hand lymphedema." Imagine this all said in a continuous loop, while you are naked and being pushed around, literally, by this guy. I found a very talented, compassionate woman who is in private practice and made a 90 minute house call--and refused payment--to help me out this weekend, and she will start to see me on a regular basis when her office opens in two weeks. Radiation is slowly progressing: down 13 of 35 total (28 regular/7 boost). The therapist did tell me to avoid mosquitos, and they love me, because the puffy hand started after a bunch of nasty bites on the wrist that I got at my friend's beach house. I went to show my daughter how to put up our tent, and one landed right on the puffy hand! And got me further up the arm. Between radiation and avoiding the bugs, it's not been a really enjoyable time. But, the big picture could be a lot worse. It's the day to day stuff that is not enjoyable right now. Judy > and isn't the 7.9% risk calculated BEFORE (without) tamoxifen, which cuts > that in half? [quoted text clipped - 95 lines] > that is not enjoyable right now. > Judy Pumpkin, the 7.9% is over 10 years. Judy > Yesterday the surgeon called with my Oncotype DX score....25. This is Mine was 19, which translates to 12% risk of recurrence, with 95% confidence that the risk is between 9% and 15%. As I understand it, this is the risk if I do nothing more than the surgery (masectomy) that I already had. > So it's not such a great score. 14.3 > percent risk of recurrence within 10 years, 68 percent survival rate. Is the survival rate related to the Oncotype DX score? I don't recall getting that info. Do you mean that among the 14.3 % with recurrence there was a 68% survival rate? after 10 years? My choice (which is not meant to influence anyone else!) was to skip the chemo and take the Arimidex. My history may have influenced this decision..... the first time I had breast cancer, the odds were about 35% that I would not live 5 years. (that was 20 years ago) So, to me, 12% risk of recurrence in 10 years did not sound so alarming. I did ask whether there was any disadvantage to waiting to take chemo if and only if I did experience a recurrence. The docs looked uncomfortable about that question, not sure I got a complete answer. They did point out that it is not possible to know that I would continue to be healthy enough to tolerate chemo in the future. > Also, the doc said I'd probably be prescribed Arimidex, and described > the side effects. I have been taking Arimidex for just over 2 months. I have been post-menopausal for several years, and now the hot flashes are definitely back. They seem to be decreasing in frequency, though I still get a few every day. I have joint trouble anyway, and cannot be sure whether Arimidex is making it wose. I do have some new tingling in my hands that is irritating and may be related to the medication. When I next see my oncologist, I intend to ask whether there are any other options, but I am not too hopeful and will probably continue taking it. My family doctor has suggested and is ordering some non-hormonal herbal treatment for hot flashes, but I don't have it yet, so can't say whether it will help. On Jul 15, 12:25 pm, sar...@rocketmail.com wrote: > My choice (which is not meant to influence anyone else!) was to > skip the chemo and take the Arimidex. > My history may have influenced this decision..... the first time I > had breast cancer, the odds were about 35% that I would not > live 5 years. (that was 20 years ago) Did you choose chemo back then? > So, to me, 12% risk of > recurrence in 10 years did not sound so alarming. > I did ask whether there was any disadvantage to waiting to > take chemo if and only if I did experience a recurrence. > The docs looked uncomfortable about that question, not > sure I got a complete answer. There are 2 kinds of recurrences, local and distant. The way I understand it, local breast cancers and recurrences (confined to the breast tissues and lymph nodes) are still "curable", while distant recurrences (bone, liver, lung, brain and so on) are not. I was relatively young (54) when diagnosed, and when my doctors advocated aggressive treatment in order to obtain a "cure". I was eager for that. I potentially have many years to loose. Had they found distant mets at the time of diagnosis, the recommended treatment would have been less severe, because there would be no hope for a "cure". Ixia > > My choice (which is not meant to influence anyone else!) was to > > skip the chemo and take the Arimidex. [quoted text clipped - 3 lines] > > Did you choose chemo back then? I did not. At that time, the conventional wisdom seemed to be that chemo was only required if there was lymph node involvement, which was not the case. However, because of my age (35 at diagnosis), tumor size (2.5 cm) and some aggressiveness measure that I do not completely recall, it was offered. Honestly, I signed up for a study and was randomized to the no-chemo group and was fine with that. > > So, to me, 12% risk of > > recurrence in 10 years did not sound so alarming. [quoted text clipped - 7 lines] > breast tissues and lymph nodes) are still "curable", while distant > recurrences (bone, liver, lung, brain and so on) are not. True. However, since I had a masectomy, the only real path for recurrence is outside the original site. So, I reasoned that the only reason for chemo now would be an assumption that it had already spread but just wasn't detectable yet. With a lumpectomy, its a different situation. As an aside...... this was considered a new primary, not a recurrence. Partly because of the long time between tumors, and partly because they were pathologically very different. > I was relatively young (54) when diagnosed, and when my doctors > advocated aggressive treatment in order to obtain a "cure". I was > eager for that. I potentially have many years to loose. A cure is a very good thing ideed! On Jul 15, 2:38 pm, sar...@rocketmail.com wrote: > As an aside...... this was considered a new primary, > not a recurrence. Partly because of the long time > between tumors, and partly because they were > pathologically very different. I'm really sorry you have to go through it again. Lets trust you'll do even better this time :-) > > I was relatively young (54) when diagnosed, and when my doctors > > advocated aggressive treatment in order to obtain a "cure". I was > > eager for that. I potentially have many years to loose. > > A cure is a very good thing ideed! Notice that I wrote "cure". There are no guaranties for any of us, even with all the treatment in the world. You do indeed seem to have been cured from your original disease, only to get it back a second time. Given a choice, I'd like to die from something other than breast cancer - but most important is to enjoy the life I do have, right now. Ixia someone wrote that remote sites (lungs, brain, bone) are not curable, but they are. Not 100% of course, but even the worst cancers (pancreas, liver, etc.) are SOMEtimes vanquished. On Jul 15, 2:38 pm, sar...@rocketmail.com wrote: > As an aside...... this was considered a new primary, > not a recurrence. Partly because of the long time > between tumors, and partly because they were > pathologically very different. I'm really sorry you have to go through it again. Lets trust you'll do even better this time :-) > > I was relatively young (54) when diagnosed, and when my doctors > > advocated aggressive treatment in order to obtain a "cure". I was > > eager for that. I potentially have many years to loose. > > A cure is a very good thing ideed! Notice that I wrote "cure". There are no guaranties for any of us, even with all the treatment in the world. You do indeed seem to have been cured from your original disease, only to get it back a second time. Given a choice, I'd like to die from something other than breast cancer - but most important is to enjoy the life I do have, right now. Ixia > On Jul 15, 12:25 pm, sar...@rocketmail.com wrote:> On Jul 13, 10:43 am, downwinder <desertny...@cwo.com> wrote: > [quoted text clipped - 27 lines] > > Ixia Pumpkin, to clarify, the bad pathology I had was Tubules: 3 and Nuclear: 2. So, poorly differentiated. At least the mitosis was 1-- slow cell division. I read somewhere that Oncotype DX takes the pathology into consideration, but don't know if I remember that right. I can't remember where I got the 68% survival number, these numbers go round and round in my head. Our smoke is starting to clear out. Here, 80 miles north of Sacramento, the sky's blue for the first time in over 3 weeks. We can see several miles. The radio says the air's still unhealthy for all groups, and the moon set blood red last night. But it's so much better than it was. I slept out on the deck last night, so got a decent night's sleep for a change. I have been taking low dose Ambien and benzodiazepines for insomnia since starting menopause, but have to be very careful because of the tolerance buildup problem. Estradiol was a great sleep aid. I notice insomnia is one of the side effects of Arimidex. Judy, does radiation slow you axillary web healing? Did you still have breast pain when you started? Mine has never stopped hurting, apparently because of all the bouncing. It's still swelled up too. I still use ice most days. How is your skin doing? Les > > On Jul 15, 12:25 pm, sar...@rocketmail.com wrote:> On Jul 13, 10:43 am, downwinder <desertny...@cwo.com> wrote: > [quoted text clipped - 53 lines] > > Les Les, my skin is a little red, with some folliculitis--I told the oncology nurse that I treat seborrheic dermatitis with topical anti- fungals--like ketaconazole--and it avoids the steroid skin thinning issue, and she thought that was a great idea. When I first noted the folliculits on my chest, it seemed like eczema, so I grabbed some lotrimin. My doctor is in Italy for three weeks, and the covering oncologist is a man who stands across the room and barely looks at me. So, initially, their skin protocol was only corn starch (and yeast loves corn starch...) and I switched to Vanicream (they've never heard of it, they like Aquaphor--but it has parabens and lanolin in it) and some lotrimin. The nurse told me "I'd never have skin problems"--I think that's because my breasts are small, so there are no skin folds. But I do have a redness that shows me the field: and it goes up my chest, and under my breast. My breasts got sore with the first treatments, and my doctor told me it was normal, and to take advil--it worked. Now, the breast just puffy--not sore. The hand puffiness lingers, but the axillary webs are resolving-- thank goodness. My new lymphedema therapist thinks that the hand puffiness should subside when radiation is over. Such a "little" thing, but combined with the two months of arm pain, and the horrible care I got at the pricey lymphedema clinic, it has been a big quality of life issue. So, the fact that "I didn't give her much to work with"--I believe the surgeon created the axillary web, because she pulled down breast tissue from the axillary area to create a cosmetically pleasing breast, and it wasn't just a simple excision. All that trauma created the seroma--which has healed to a hard lump--I wonder about scar release from a massage therapist when radiation is over--and the extensive axillary webbing--which are thrombosed lymphatics, and are considered subclinical lymphedema--and easily become clinical lymphedema. There was a good article posted on Breastcancer.org where women with early lymphedema after surgery were just given over the counter Jobst sleeves and gauntlets and told to wear them during the day--no fancy treatment required--and most resolved. It gives me hope. I wear the gauntlet, and it helps a lot. I bought it at a pharmacy. They're cheaper on line. What a drag. It's quality of life stuff, but it does add up. Radiation today: 13/35 and counting. Judy > There was a good article posted on Breastcancer.org where > women with early lymphedema after surgery were just given over the > counter Jobst sleeves and gauntlets and told to wear them during the > day--no fancy treatment required--and most resolved. It gives me hope. Interesting. It's frustrating how little seems to be known about LE. My hand and arm swelled and was painful, first after the mastectomy, then again during radiation. I did find treatment, and the situation seems to be under control, but it was a battle I had to fight and sort out largely on my own. I was not impressed with my doctors, except my radiologist, who helped me a lot when I swelled during radiation. > I wear the gauntlet, and it helps a lot. I bought it at a pharmacy. > They're cheaper on line. I went through ready-made sleeve and glove, custom made sleeve and glove and a lympha-vest, but at this time I don't use any of it. I do the self massage etc. > What a drag. It's quality of life stuff, but it does add up. > Radiation today: 13/35 and counting. Rest up and enjoy your summer days as best you can :-) Ixia > > There was a good article posted on Breastcancer.org where > > women with early lymphedema after surgery were just given over the [quoted text clipped - 25 lines] > > Ixia Ixia, I agree that in the end you manage it yourself. I do have a new therapist lined up, and she actually came to my home for the initial appointment, and spent a long time educating me. Right now I have the custom night sleeve and glove ordered. I do the self massage twice a day, and it really helps. My surgeon is beyond useless, and unfortunately my personal radiation oncologist is in Italy for three weeks: she sits right next to me and touches me and is so kind and helpful. The male partner who is covering, stands 6 feet away and backs out the door as soon as he walks in. Kind but not helpful. I really hope, and the new therapist was hopeful also, that this swelling can be managed---as you have done, to the point that it won't be a major issue. Right now it is: day gauntlet, night wrap--woke up in the middle of the night with a numb pinkie due to a pressure point. It's been really hard to deal with--especially because the clinic at the Breast Health Center is so badly run, and I was getting horrible, expensive care and no one was agreeing with anyone else. And the last therapist, a male PT who doesn't seem to like women, was down right nasty. Just what you want when you're laying there without clothes on.... Another woman at radiation was reading a funny book by David Sedaris, and said it was so funny she had to stop from laughing as she read--a good approach. I'm sitting there reading articles on metastatic cancer..... My lovely personal physician just called with some kind support and that goes a long, long way. Thanks for the information and advice, I'm going to cut myself a break and enjoy the beautiful days. I calculated wrong--#15 treatments down. (every one counts, closer to the end of radiation.) Judy > Right now I have the custom night sleeve and glove ordered. I do the > self massage twice a day, and it really helps. I never got a night garment. Somebody told me to sleep with my arm higher than my heart, because it would promote drainage. I trained myself to do that pretty easily, and it works well. I use big pillows next to me when I sleep on my back, and a small pillow to keep my arm elevated on my side and comfortable when I sleep on my side. It sounds crazy, but when I realized how well it works for me, it was easy to remember the pillows even in my sleep. I have also gotten into the habit of keeping my arm above my heart when I rest, read, and so on. It's my left arm, and I'm right-handed. Makes it easier. > I really hope, and the new therapist was hopeful also, that this > swelling can be managed---as you have done, to the point that it won't > be a major issue. I have a hunch you'll be ok once the effects of radiation are behind you. I'm almost surprised that not everyone undergoing bc treatment get swelling. Lymph-nodes have been removed and damaged at the same time as there is tissue damage from mastectomy/lumpectomy and radiation, sutures to break down and be absorbed... I got very frightened of debilitating LE when my arm and hand swelled, but in retrospect I see it more as my injured body's natural reaction to all the stress and assault. > Right now it is: day gauntlet, night wrap--woke up in the middle of > the night with a numb pinkie due to a pressure point. It's been really [quoted text clipped - 3 lines] > PT who doesn't seem to like women, was down right nasty. Just what you > want when you're laying there without clothes on.... At the treatment center I go to, they give me evaluation forms to fill in at regular intervals. I make sure I do - I have let them know both about the "good" and the "bad". No one should have to endure nastiness from therapists, especially not in such a vulnerable situation. The women who come after you could benefit from your comments. I have actually been amazed by the kindness of my treatment team. I would say that my doctors have acted more like "warriors", going after the disease bravely and ruthlessly. I see that as their compassion. The nursing staff have been loving and supportive on a much more personal level - and of course I have spent much more time with them. The PT who gives me treatment for LE has neither the fierce bravery of my doctors, nor the kindness of the nursing staff, but she's been ok. She is a cancer survivor and has LE herself, so has inside knowledge so to speak. > Another woman at radiation was reading a funny book by David > Sedaris, and said it was so funny she had to stop from laughing as she > read--a good approach. I'm sitting there reading articles on > metastatic cancer..... Oh, no! :-D Switch to Sedaris! - He /is/ funny! I practice "healthy thinking" the same way as I choose a healthy diet: I keep myself informed /enough/ about my disease, but don't allow any research into worst case scenarios, wallowing in worry, self-pity or negative and depressive thoughts. I have firmly decided to let my team of doctors worry about the worst-case scenarios, I'm simply not going to. I also stay away from people who bring me down, even when they are well-meaning. > My lovely personal physician just called with some kind support and > that goes a long, long way. > Thanks for the information and advice, I'm going to cut myself a > break and enjoy the beautiful days. > I calculated wrong--#15 treatments down. (every one counts, closer > to the end of radiation.) You're right, that's one count to keep straight :-) The end is in sight! Take care :-) Ixia > > Right now I have the custom night sleeve and glove ordered. I do the > > self massage twice a day, and it really helps. [quoted text clipped - 76 lines] > > Ixia Thanks, it all makes so much sense. It's my left side, and I'm left handed, so that has been an issue, but I do agree with you that the assault on our tissues and lymph nodes has been brutal, and the body needs time to heal. I've avoided giving direct feedback about the bad care currently, because the system is so messed up: I don't think it will be used constructively, and I'll just be labeled "difficult". I found a great therapist who is leaving the center--I found her on my own, she works at a satellite office and made a home visit, and has called with great advice and support. Her sister in law has lymphedema after skin cancer surgery, so she is very supportive. I do like my medical oncologist, and my medical physician. It's just the surgeon and the lymphedema clinic that I have issues with (run by an administrator who knows nothing about lymphedema, yet gives national lectures and has no clue how to supervise the people who work for her.) Just completed #16/35 radiation treatments, and counting. I read with my arm up, and it helps considerably. Off to get the David Sedaris book... Thanks for great advice and perspective. Judy > Just completed #16/35 radiation treatments, and counting. Almost half way there - you go, girl! :-) Ixia > > > On Jul 15, 12:25 pm, sar...@rocketmail.com wrote:> On Jul 13, 10:43 am, downwinder <desertny...@cwo.com> wrote: > [quoted text clipped - 97 lines] > > - Show quoted text - Judy, thanks for the skin advice. Had my first treatment today--1/25th of the way through. I was upset when they took ANOTHER chest x-ray, which they said they'd do once a week. Are they doing that to you, Judy? According to the doctor, any lung cancer I get from radiation won't develop till I'm at least 70, as if that's supposed to make me feel better. True, after the nuke tests were done, it took about 10 years for my first cancer to appear, and 45 years for breast cancer. Sounds like you have a good theory how your axillary web occurred. At least I had plenty of blubber to carve out of. If having lots of skin rubbing against other skin will be a problem during radiation, I'm in for some trouble. The pain caused by the inevitable bouncing is still there. After the walk home from the neighbor's, the first thing I told my husband was, "Don't ask". I'll be saying that a lot. People have been asking for weeks how the radiation's going, totally oblivious how long everything takes. The smoke has improved some, but there's a new fire. Someone left their truck running by the side of a road and their muffler started it. There are supposed to be thunderstorms higher in the Sierras, so we're all holding our breath. Les > > > > On Jul 15, 12:25 pm, sar...@rocketmail.com wrote:> On Jul 13, 10:43 am, downwinder <desertny...@cwo.com> wrote: > [quoted text clipped - 124 lines] > > Les Les, I had a complete melt down on the covering radiation oncologist when I discovered how much of the axilla is in the field--quite a lot-- the techs were very straight with me about that. The covering radiologist told me that no studies show any increased lymphedema with that "tangential" axillary radiation--actually they do--16%, but at this point, with only 10 sessions left, there is no point in arguing that informed consent really wasn't informed. I spoke to my sister today, and discussed all this: I know why I made my decision to have the therapy--my margins were 1mm posterior. Not a lot of room for error. So, I didn't really know all of the risks, but my radiation oncologist never mentioned any increased risk of lung cancer--just some lung scars, and I had a chest xray prior, and yes, I do get x-rays constantly during so they can be sure they're in the right spot. Ironically, I quit bandaging my arm last night, and my hand is so much better. I spoke to a national expert today and she told me that recent studies out of Stanford show that excess compression is harmful. That's what I've thought all along, yet these ridiculously expensive and poorly trained lymphedema therapists wrap you so your hand turns blue.... Les, I've spoken to other people, and pretty universally they find radiation therapy stressful on many, many levels. I know that I have. I know you've had very reasonable concerns, and "don't ask" is a perfectly understandable response. So, I hope that 25 sessions (5 weeks) passes before you know it. I personally use Vanicream, and really like it. And cotton tee shirts are helpful. Hope the fires settle down: my family in the bay area stopped complaining about the smoke recently. My thoughts are with you, and I hope for a swift and uneventful course. Judy I would tell them I don't want chest x-rays every week. That's just me. I got one before the mastectomy and I wasn't happy. more radiation, ad infinitum. is there any way to tell them no thanks? dang, it is just such a pisser. but only 24 to go, just tell yourself that. our fire up here is better. On Jul 16, 4:55 am, "judy.n" <judy.nudel...@gmail.com> wrote: > On Jul 15, 2:58 pm, downwinder <desertny...@cwo.com> wrote: > [quoted text clipped - 102 lines] > > - Show quoted text - Judy, thanks for the skin advice. Had my first treatment today--1/25th of the way through. I was upset when they took ANOTHER chest x-ray, which they said they'd do once a week. Are they doing that to you, Judy? According to the doctor, any lung cancer I get from radiation won't develop till I'm at least 70, as if that's supposed to make me feel better. True, after the nuke tests were done, it took about 10 years for my first cancer to appear, and 45 years for breast cancer. Sounds like you have a good theory how your axillary web occurred. At least I had plenty of blubber to carve out of. If having lots of skin rubbing against other skin will be a problem during radiation, I'm in for some trouble. The pain caused by the inevitable bouncing is still there. After the walk home from the neighbor's, the first thing I told my husband was, "Don't ask". I'll be saying that a lot. People have been asking for weeks how the radiation's going, totally oblivious how long everything takes. The smoke has improved some, but there's a new fire. Someone left their truck running by the side of a road and their muffler started it. There are supposed to be thunderstorms higher in the Sierras, so we're all holding our breath. Les > I would tell them I don't want chest x-rays every week. That's just me. I > got one before the mastectomy and I wasn't happy. more radiation, ad [quoted text clipped - 142 lines] > > - Show quoted text - Judy and Fortunata, I complain often to try to stop or limit seemingly pointless tests, but let's face it, these people have us by the ovaries. They always say it's their protocol. Once in a while I get results. My moaning and groaning and crying induced my radiation doctor to do a partial breast thing. The technicians said today that what I'm getting is unusual, causing lots of adjustments. But it also caused another X- ray. My lymphedema-ravaged neighbor has a sleeve, but she never wears it. Sounds like you'd have better luck with witch doctors to treat that. Judy, I'm sure you no longer feel surprise when you realize a doctor has lied. I expected it from the start, it's a big part of the fear factor. I asked if it's unusual to get this red hot feeling after the first treatment, and the technicians said it is. I have a feeling my bras will be very uncomfortable soon, but I can't go without one. I'll get some Vanicream when I do the store thing Friday. At present I'm just slathering aloe vera gel from my big old plant. What's wrong with lanolin? Emollients aren't what we need right now, but rather moisturizers? Judy, are you taking any supplements helpful for radiation? I was told to stop all anti-oxidants. Smoke Journal: extremely thick again today, no sun. I know people in El Cerrito too, Judy. They could only smell smoke for 3 days. Les > I'll get some Vanicream when I do the store thing Friday. At present > I'm just slathering aloe vera gel from my big old plant. What's wrong > with lanolin? Emollients aren't what we need right now, but rather > moisturizers? Judy, are you taking any supplements helpful for > radiation? I was told to stop all anti-oxidants. I was also told to stop all anti-oxidants, but got permission to use aloe vera with green-tea extract on my skin. It was helpful. Radiologist recommended cocoa butter but I could not stand the smell, so switched to shea butter. Personally I preferred the aloe vera with green-tea. Here is an article you may find useful: http://www.sciencedaily.com/releases/2006/12/061201110255.htm "In a study published in the open access journal BMC Medicine, researchers show that tea acts at the cellular level, by inhibiting inflammatory pathways, to reduce inflammation. They also show that tea extracts reduce the duration of radiation-induced skin damage by up to 10 days in patients who received radiation treatment." I used this brand, but I'm sure there are many others:http:// www.albabotanica.com/?id=55&pid=329 Ixia > > I'll get some Vanicream when I do the store thing Friday. At present > > I'm just slathering aloe vera gel from my big old plant. What's wrong [quoted text clipped - 20 lines] > > Ixia Although I'd read on line about stopping anti-oxidants, the directions from my center said to continue all vitamins. I just take a multivit and extra D. They swear by Aquaphor, I just don't like it. A lot of people really like the aloe vera. I was offered partial breast, external, but the radiation oncologist recommended against it--and it wasn't a detailed discussion, it was just that she had seen some poor cosmetic results. So???? Yesterday, her coverage actually sat down: showed me the details of my chart, the field (very few axillary/breast nodes in it) explained the boost field and the mechanism, and it took no longer than the usual 5 minutes. What a refreshing encounter. No bullshit, just sharing the facts. Re: the lymphedema, because my private person doesn't start until next week, and trying to be a "good" patient, I had one last session at the ridiculously expensive clinic at the breast health center--the jerk of an Italian PT (only licensed as a LMT in the US), treated me, poorly, for less than 20 minutes. I left a furious (and stupid) message on his boss' phone that if I am charged for an hour, I will call the fraud line at my insurance. He told me it couldn't be lymphedema, because it only involves my hand: I spoke to a national expert, who confirmed that "the hand is the first to go". I agree, witch doctors would be better. There was a study that showed for early swelling, just wearing over the counter sleeves and gauntlets, no fancy massage, worked very well. I have been doing that. Les, for partial breast, they usually do it quite quickly, over the course of a week--is that what you are getting? The good news it that the axillary webs are gone, so now my poor attacked lymph vessels can try and heal. And, the pain is gone. Judy On Jul 22, 6:44 pm, Ixia <ixiaviridifl...@gmail.com> wrote: > On Jul 22, 4:14 pm, downwinder <desertny...@cwo.com> wrote: ... > I was offered partial breast, external, but the radiation oncologist recommended against it--and it wasn't a detailed discussion, it was just that she had seen some poor cosmetic results. So???? A lot of women are very concerned about cosmetic results. We're all different. Mary > On Jul 22, 6:44 pm, Ixia <ixiaviridifl...@gmail.com> wrote: > [quoted text clipped - 5 lines] > > We're all different. A recent study shows that you are right when you say that a lot of women are very concerned about cosmetic results. Some struggle with depression and a loss of quality-of-life after lumpectomy: http://www.webmd.com/breast-cancer/news/20080709/breast-asymmetry-affects-qualit y-life • Nearly a third of women who had breast-conserving surgery reported having "pronounced" asymmetry of their breasts after surgery. • Women with pronounced asymmetry in their breasts were 4.5 times more likely to feel stigmatized because of their cancer treatment. They were also less likely to report unchanged health status or that their health had improved after the treatment. • Women who had minimal breast asymmetry reported higher quality-of- life scores than women with pronounced breast asymmetry after surgery. • Women with pronounced breast asymmetry were more likely to have symptoms of depression; 34% of women with pronounced asymmetry had symptoms of depression, compared with 16% and 18% of those with minimal and moderate breast asymmetry, respectively. • Women with pronounced breast asymmetry were twice as likely to fear that cancer would recur when compared with those with minimal asymmetry. Breast Asymmetry Affects Quality of Life "We found that one of the most important factors of post-operative quality of life and satisfaction was post-operative asymmetry or the aesthetic outcome that women experienced after their surgery," Waljee says in a news release. Waljee says that "It's important for women to think about all of those issues at the time that they're making their surgical decision and realize that although breast conserving surgery may or may not be less disfiguring than mastectomy, they're likely to experience some asymmetry afterwards that may impact their quality of life." She hopes the findings can help lead to improved care for breast cancer patients. "It's important for breast surgeons to have an open and honest dialog with their patients so that they understand patients' expectations before surgery and can better address post- operative recovery needs." The American Cancer Society reports that 182,460 women in the U.S. will be diagnosed with invasive breast cancer this year and 40,480 will die from the disease. The results appear in the July 10 edition of the Journal of Clinical Oncology. Ixia > > I was offered partial breast, external, but the radiation oncologist > > recommended against it--and it wasn't a detailed discussion, it was [quoted text clipped - 3 lines] > > We're all different. A recent study shows that you are right when you say that a lot of women are very concerned about cosmetic results. Some struggle with depression and a loss of quality-of-life after lumpectomy: It's not a recent phenomenon. I didn't care a jot, my life was more important, but I know that others do, that's the answer to "So?" • Nearly a third of women who had breast-conserving surgery reported having "pronounced" asymmetry of their breasts after surgery. I have asymmetry. I don't think that anyone would notice and if they did - so? • Women with pronounced asymmetry in their breasts were 4.5 times more likely to feel stigmatized because of their cancer treatment. Stigmatised? I don't. • Women who had minimal breast asymmetry reported higher quality-of- life scores than women with pronounced breast asymmetry after surgery. I doubt that anyone has a higher quality of life than I do! Hell's bells, one breast is smaller than the other. very time I see my scar I'm reminded that I'm alive. • Women with pronounced breast asymmetry were more likely to have symptoms of depression; 34% of women with pronounced asymmetry had symptoms of depression, compared with 16% and 18% of those with minimal and moderate breast asymmetry, respectively. Depression isn't any part of me. Never has been and no difference to my body would cause it. I work on the principle that if I have it I flaunt it, therefore I show off my scar and tattoos. Sadly, everyone's always disappointed, they were expecting something more dramatic! • Women with pronounced breast asymmetry were twice as likely to fear that cancer would recur when compared with those with minimal asymmetry. That's sill, I've never heard that before. Sounds like misinformation Breast Asymmetry Affects Quality of Life As with all research, if you look for something you find it. As for it being published, it simply emphasises that women should aim for physical perfection. We'll never attain that and in itself the aim can be damaging, I believe. Mary sitting back and waiting for flack > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 3 lines] > > That's sill, I've never heard that before. Sounds like misinformation Not so sure about that. It could be very simple: Women with asymmetry may be reminded f the disease by the way they look, and think about cancer and recurrence as a result. I fear recurrence, but only hen I think about cancer. > Breast Asymmetry Affects Quality of Life > [quoted text clipped - 5 lines] > Mary > sitting back and waiting for flack You are not going to get flack from me. As I have mentioned before, I went with a mastectomy where my oncologist recommended lumpectomy. I have no regrets, and feel fine about my own, ahem, "asymmetry". Regarding your comment "As it being published, itsimply emphasises that women should aim for physical perfection." - I have a hunch that the issue is quite a bit more complicated than that. At any rate - I do have some sympathy for the doctors who have to advise us in these matters. I think they tend to be blamed when we are less than happy with treatment - and who wouldn't want to escape all this nasty treatment. I regularly remind myself that while bc sucks, and my doctors are only human, they /are/ trying to help me live as long and as healthy a life as possible. Ixia On Jul 23, 10:26 am, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote: > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 3 lines] > > That's sill, I've never heard that before. Sounds like misinformation Not so sure about that. It could be very simple: Women with asymmetry may be reminded f the disease by the way they look, and think about cancer and recurrence as a result. I fear recurrence, but only hen I think about cancer. As I said, I'm reminded that I'm still alive :-) ... At any rate - I do have some sympathy for the doctors who have to advise us in these matters. I think they tend to be blamed when we are less than happy with treatment Oh how right you are! I know that I bless my surgeon and all the teams whenever I think of them. And iI've thanked them all, mny times, directly. I know I'm not alone. - and who wouldn't want to escape all this nasty treatment. It's better than the alternative, and as others have said, it's do-able. I regularly remind myself that while bc sucks, and my doctors are only human, they /are/ trying to help me live as long and as healthy a life as possible. Hear hear! Mary > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 3 lines] > > As I said, I'm reminded that I'm still alive :-) I am reminded of both, but as I have mentioned earlier, I don't allow myself to dwell on negative thoughts. For some, that kind of "mind control" might come naturally, but I have had to train myself to "think healthy". Most people never reflect on their own thoughts, and many suffer badly as a consequence. I sympathize, it's terrible. > ... > [quoted text clipped - 5 lines] > teams whenever I think of them. And iI've thanked them all, mny times, > directly. I know I'm not alone. You certainly are not. I am deeply grateful to my whole treatment team, and I make sure to thank them, both in person and in my mind. > > - and who wouldn't want to escape all > > this nasty treatment. > > It's better than the alternative, It is. We should try to remember that. When I was a child, my aunt, who was only in her 30's, died of bc. Her years of disease was horrible, for her, for her small children and for her whole family. She was diagnosed late, and never had a chance of recovery, or even of quality of life after her diagnosis. I can't tell you how grateful I was when my oncologist told me that I actually have a chance of a "cure"... She pulled out the heavy artillery, and nothing is further from my mind than complaining. > and as others have said, it's > do-able. For me, it has been tough but /so/ do-able. I can't point to any day or moment of treatment and say "that's the worst that ever happened to me." It's simply not, and I have enjoyed my life this past year. The biggest challenge of treatment is that it goes on and on and on. I was diagnosed a little more than a year ago, and have been under intensive treatment since. I still have a few months left of Herceptin infusions and if I know my oncologist, she'll come up with something else after that, probably Zometa. Ixia ... I can't tell you how grateful I was when my oncologist told me that I actually have a chance of a "cure"... She pulled out the heavy artillery, and nothing is further from my mind than complaining. I've never been told there's a chance of a cure, if I were I'd argue. I don't believe in cures for cancer. Yet. But I was grateful when I was told that I had bc, after a routine mammogram. It meant that I was in the hands of the experts and that I had a chance of life. I felt the same when i had a diagnosis of a meningioma and when Spouse had his pc diagnosis. > and as others have said, it's > do-able. For me, it has been tough but /so/ do-able. I can't point to any day or moment of treatment and say "that's the worst that ever happened to me." It's simply not, and I have enjoyed my life this past year. That's an excellent way of thinking about it, that it hasn't been the worst that's ever happened to you. Mind you, I can't think of the worst that's ever happened to me :-) The biggest challenge of treatment is that it goes on and on and on. I was diagnosed a little more than a year ago, and have been under intensive treatment since. I still have a few months left of Herceptin infusions and if I know my oncologist, she'll come up with something else after that, probably Zometa. I have no idea what Zometa means, we have different names for medications. Whatever happens, I wish you the best. Mary > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 4 lines] > I've never been told there's a chance of a cure, if I were I'd > argue. I don't believe in cures for cancer. Yet. I'm not an argumentative person :-) There is no cure for cancer, but more and more people who get cancer go on to live into old age and die of other causes. Tim gave this explanation a few days ago: "you are considered to be 'cured' when your risk drops close to the base level for bc survivors. (Which is I think about twice as high as for the population at large)". No live cancer cells were found when they did a mastectomy, so my oncologist declared me "theoretically cured". - I have undergone a lot of treatment, and there is no evidence of disease to be found at this time. (....) > I have no idea what Zometa means, we have different names for > medications. Zometa is a drug that recently has been found to to cut the risk of recurrence of bc in some high risk women. >Whatever happens, I wish you the best. Thank you. And I you. I also wish you a happy holiday - I think you said you are going away. Ixia >> I have no idea what Zometa means, we have different names for >> medications. >> > Zometa is a drug that recently has been found to to cut the risk of > recurrence of bc in some high risk women. >> Whatever happens, I wish you the best. Zometa is a bisphosphonate drug, one of the class used to reduce bone loss due to metastases and hormone therapy. Basically they inhibit or kill off the cells which reabsorb bone and help balance the effects of estrogen loss. This particular drug also claims other mechanisms of action such as preventing tumour cells from bonding to the bone structure. Tim >>> I have no idea what Zometa means, we have different names for >>> medications. [quoted text clipped - 10 lines] > > Tim Yes, it's said to have a role in some forms of prostate cancer too, I understand. But I'd never heard of it until now. I know far less than there is to know about everything - except myself. Even that's a puzzle sometimes :-))) Mary On Jul 23, 2:53 pm, "Mary Fisher" <mary.fis...@zetnet.co.uk> wrote: > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 4 lines] > I've never been told there's a chance of a cure, if I were I'd > argue. I don't believe in cures for cancer. Yet. I'm not an argumentative person :-) There is no cure for cancer, but more and more people who get cancer go on to live into old age and die of other causes. I know, but you said that your oncologist told you you had a chance of a "cure". That's raising false hopes, I believe. We must be pragmatic about this. Thank you. And I you. I also wish you a happy holiday - I think you said you are going away. On Tuesday, our first proper holiday for fifty years. It's distracting, I'm finding myself trying to fill in the waiting time :-) Mary > "Ixia" <ixiaviridifl...@gmail.com> wrote in message > [quoted text clipped - 13 lines] > of a "cure". That's raising false hopes, I believe. We must be pragmatic > about this. That is what she said, and it was clear what she meant: With vigorous treatment, I may actually live and be well for a number of years. Without that treatment my chance of disease free life is poor. I did not feel that my hopes were raised falsely, I just understood the importance of treatment, and can accept it gratefully. I feel so sad when I see the anger and mistrust some women have toward their doctors and treatment. It seems to add a tremendous amount of needless pain and suffering to their situation. The way I see it, doctors are never more than human, and bc treatment is often crude, but as you said: It's a lot better than the alternatives. > Thank you. And I you. I also wish you a happy holiday - I think you > said you are going away. > > On Tuesday, our first proper holiday for fifty years. It's > distracting, I'm finding myself trying to fill in the waiting time :-) Wow - first in fifty years! That will be something :-) To be able to enjoy life is a gift that some people have, but a skill that all of us can learn. You'll have a really wonderful time, I know. Don't forget to enjoy the waiting time also - in a way the trip has already begun. I hope you'll fill us in a bit when you come back :-) Ixia > On Tuesday, our first proper holiday for fifty years. It's > distracting, I'm finding myself trying to fill in the waiting time :-) Wow - first in fifty years! That will be something :-) To be able to enjoy life is a gift that some people have, but a skill that all of us can learn. You'll have a really wonderful time, I know. Don't forget to enjoy the waiting time also - in a way the trip has already begun. That's true. This morning I've been to the beautician for lash tinting and brow shaping, and the bra shop where the fitter threw out the one I wore to go in and fitted me properly, first time ever I think. It was very professional. Last week I had my hair cut properly - both of which I haven't done in many years -and I've also had a crown fitted. On a tooth :-) Bought lots of sparkly feminine clothes (normally a jeans and sweat shirt type) and even he's thrown out his ancient raggy shirts and bought ten new expensive ones and a couple of suits. He has to have a dinner suit and the moths had been in his old one. I've told him he's going to enjoy it whether he likes it or not. I hope you'll fill us in a bit when you come back :-) Try and stop me :-) Mary it's an Arctic cruise ... > That's true. This morning I've been to the beautician for lash tinting > and brow shaping, and the bra shop where the fitter threw out the one I wore > to go in and fitted me properly, first time ever I think. It was very > professional. Last week I had my hair cut properly - both of which I haven't > done in many years -and I've also had a crown fitted. On a tooth :-) Bought > lots of sparkly feminine clothes (normally a jeans and sweat shirt type) That's what I mean - the adventure has already started! ;-) > and > even he's thrown out his ancient raggy shirts and bought ten new expensive [quoted text clipped - 4 lines] > :-D It will be like a 2nd honey-moon ;-) |
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