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Medical Forum / Diseases and Disorders / Breast Cancer / June 2005I am opting for no chemo...anyone else?
I am Stage III with one positive lymph node, micromet. At 52 with ER/PR+ and Her2- profile I do not feel the numbers support chemo, at least not for me. I am taking Femara and considering radiation for a measure of local control. I know the standard treatment protocols and I'm breaking the rules. My tumor was over 2cm's and I am node positive. It was thankfully Grade 1. I would love to have your input and personal experience. My oncologist flatly states the bc population is over treated and supports my choice. The oncologist I saw for a 2nd opinion was not in agreement. I chose not to have chemo. My surgeon had a chart that showed chemo would only improve my odds 4°. He also said there was no point in radiation since I had a mastectomy. I was stage one with a large lump and one lymph node involved. I am on Arimidex. > I chose not to have chemo. My surgeon had a chart that showed chemo > would only improve my odds 4°. He also said there was no point in > radiation since I had a mastectomy. I was stage one with a large lump > and one lymph node involved. I am on Arimidex. Teddy, Thx for sharing your experience. It's validating your onc did not push chemo and gave you the 4% survival stat. With one lymph node involved I believe you would be Stage II vs. I. ? When was your surgery and how are you feeling on the Arimidex? They said I was stage one before surgery but never mentioned it later. I feel fine but am having problems with pain. My other posts talk about it. I just read a post that goes into detail about lymphedema and that may explain my weird symptoms. Odd that my local dr., the oncologist and the plastic surgeon didn't notice the posibility of lymphedema. Oh, my surgery was in March of 04-last year. Each person takes the docs' recommendations, researches them, ...... asks the doc questions, asks others questions, ..... researches on the internet (esp. Google archives), & then decides. It's important NOT to trust the docs. If I had it to do over again, I'd Not do the chemotherapy of Adriamycin/Cytoxin or Taxol, ..... because it can cause so much damage, & so many ongoing, expensive & extensive, debilitating & painful health problems, ..... & there's no proof that it's beneficial or works at all. The docs said I had third-stage cancer & "no chance", ..... then insisted I do the chemotherapy anyway, that it would give me all these great chances at life, many more years. This didn't make sense. It was nonsense, double-talk. When I said that, the docs insisted I trust them, & said they knew what they were doing. I'd probably have tried the Arimidex, then quit it after the first week, due to the severe adverse side effects. [When I started taking it (2002), these side effects weren't being acknowledged by the docs, ..... so it was difficult for me to find & prove the source of the problems.] I might still have done the radiation, because the removed breast was yellow-orange, & I was scared. ??? I don't trust the docs, or the current cancer care. I think tt's important that we learn more about alternative cancer care, ..... that MDs & DOs be allowed & encouraged to prescribe this, instead of the unproven & harmful chemos, ..... & that insurance companies pay for the alternative treatments. Whatever we do, we are going to die. It's important we have some $$$ & safety, some quality of life, some power & control, ..... & not just get robbed of $$$, run in circles, lied to, conned & poisoned by docs, all the way to death. Susan, Su_Texas my opinions Susan, How are you in terms of your bc, have you progressed or had a relapse? BC is so insidious. We do not write the script with this disease process but I believe we can edit it. Wishing you wellness. > Each person takes the docs' recommendations, researches them, ...... > asks the doc questions, asks others questions, ..... researches on the [quoted text clipped - 35 lines] > > Susan, Su_Texas my opinions From: moonwild@gmail.com (Maria) Susan, How are you in terms of your bc, have you progressed or had a relapse? BC is so insidious. We do not write the script with this disease process but I believe we can edit it. Wishing you wellness. ==================================== The left breast & most (middle) of the right breast are gone, so the BC probably can't come back in breast tissue. The docs did (& do) a lot of CAT scans & xrays, but didn't find any fourth-inch size new lumps in my chest. Other than that, the docs say they have no way of determining whether cancer is "cured" or has spread, whether it's present or not. They seem to judge "success rate", mostly on when you drop dead. The length of time it takes. How many years. The detection, rating & treatment of breast cancer, still seem to be in extremely early & primitive stages in the Medical Industry (MDs, DOs). ------------- The docs also say, that the BC may be secondary & have spread from a primary tumor elsewhere, ...... but they have no way of testing for that, other than to do repeated CAT scans & xrays, looking for fourth-inch or larger lumps. And the docs use scare tactics, like "if a new lump forms, you're a goner. No hope." "If you don't trust me & do everything I say, you're a goner. And the death from BC is horrible. Trust me." The stress from the docs' comments, & the way this clouds one's judgement & decisions for BC care, is overwhelming. In 2002, I wish I'd had the smarts & savvy, the information & the support, to "Just Say No" to the Adriamycin/Cytoxin & Taxol chemotherapies, ..... & I wish that the adverse reactions to Arimidex had been listed, & the docs forced to acknowledge this & back off. I should Never have trusted the docs, or the propaganda constantly being pumped out by the media, about BC & docs. -------------- I wish you well in whatever choices you make, & wherever your life journey takes you. Susan, Su_Texas my opinions ... > Other than that, the docs say they have no way of determining whether > cancer is "cured" or has spread, whether it's present or not. Well, that's true. > They seem to judge "success rate", mostly on when you drop dead. The > length of time it takes. How many years. Yes ... that's perfectly normal. I had a 'good ten year' prognosis. That'd do me, if it could be guaranteed - there are an awful lot of other things waiting for me :-) > The detection, rating & treatment of breast cancer, still seem to be in > extremely early & primitive stages in the Medical Industry (MDs, DOs). Doctors aren't magicians. Mary >I am Stage III with one positive lymph node, micromet. At 52 with >ER/PR+ and Her2- profile I do not feel the numbers support chemo, at [quoted text clipped - 6 lines] >flatly states the bc population is over treated and supports my choice. >The oncologist I saw for a 2nd opinion was not in agreement. My onc. told me that the "team" had some discussion about whether I needed chemo but ended up recommending it. I would have done whatever they said. I also had radiation. Looking back, I'm thankful for the chemo just so I don't wake up in the night second-guessing myself. I'm a 2am stewer, and tend to carry around a basket of "If only I had done this or not done that" with me from my childhood on. I'm taking arimidex with no problems. Good luck with whatever you decide to do. Marilyn > My onc. told me that the "team" had some discussion about whether I > needed chemo but ended up recommending it. They have to discuss individual cases becaue there are so many variables. > I would have done whatever > they said. I also had radiation. Me too. Although they didn't recommend chemo. > Looking back, I'm thankful for the chemo just so I don't wake up in > the night second-guessing myself. I'm a 2am stewer, and tend to carry > around a basket of "If only I had done this or not done that" with me > from my childhood on. That's a shame - I'm sure you know that it's not true ... > I'm taking arimidex with no problems. Most people do. I might have done for five years but I'm on a trial so don't know. It might have been Tamoxifen, it might have been both. I had no side effects at all. Mary >> Looking back, I'm thankful for the chemo just so I don't wake up in >> the night second-guessing myself. I'm a 2am stewer, and tend to carry >> around a basket of "If only I had done this or not done that" with me >> from my childhood on. > >That's a shame - I'm sure you know that it's not true ... Most of them aren't important but they do keep popping up. Fights with friends when I was 8, for example. <g> What year are you in with your drug test? I've had 2.5 years with Arimidex. Marilyn >>> Looking back, I'm thankful for the chemo just so I don't wake up in >>> the night second-guessing myself. I'm a 2am stewer, and tend to carry [quoted text clipped - 8 lines] > What year are you in with your drug test? I've had 2.5 years with > Arimidex. Seven - it's the ATAC programme. You can elect to stop at any time but it can come to a worthwhile end after five years. However, it can continue for another five even though you're not taking drugs, I elected to continue. How are you doing with Arimidex? Mary > Marilyn >Seven - it's the ATAC programme. You can elect to stop at any time but it >can come to a worthwhile end after five years. However, it can continue for [quoted text clipped - 3 lines] > >Mary Fine. The only side effect I've had is a few hot flashes once in a while. Maybe 3 a month, but not bad ones at all. Just my face getting a little warm. The onc. had originally said I would be taking it for 5 years, but I "think" I read somewhere that people are now continuing to take it longer than that. Arimidex depletes calcium so I have to take calcium/vit D three times a day. More often than not I forget and end up taking all three giant pills at bedtime. Did your doctor tell you to take extra calcium where you are in a blind test? Marilyn > Arimidex depletes calcium so I have to take calcium/vit D three times > a day. More often than not I forget and end up taking all three giant > pills at bedtime. ---------- I recently found out that when you take more than 500 mg of calcium at one time it is a complete waste, because your body can only absorb 500 mg at once. I was taking my 2 calcium pills at once and now I am forced to remember to take it twice a day. Usually I can remember to take it in the evening by taking it at the same time I feed the cat. The cat won't let me forget to feed her! Eva >> Arimidex depletes calcium so I have to take calcium/vit D three times >> a day. More often than not I forget and end up taking all three giant [quoted text clipped - 9 lines] > >Eva Rats. I've been keeping the three calcium and a multivitamin on my computer desk, but they get lost among my CDs, sunflower seeds, sticky notes and other junk, so I've just lined up the three for tomorrow along the top edge of my keyboard where I can't miss them. I hope. Marilyn >>Seven - it's the ATAC programme. You can elect to stop at any time but it >>can come to a worthwhile end after five years. However, it can continue [quoted text clipped - 17 lines] > pills at bedtime. Did your doctor tell you to take extra calcium where > you are in a blind test? No, but if I took any calcium extra to my normal food intake I'd turn into a stalagmite! This is something I haven't heard of, Arimidex depleting calcium, that is. Nor have I known any UK women being advised to take calcium supplements. That doesn't mean it doesn't happen, just that I haven't heard of it! Mary > Marilyn >No, but if I took any calcium extra to my normal food intake I'd turn into a >stalagmite! [quoted text clipped - 4 lines] > >Mary I love milk, cream, cheese and yogurt too. Yum. And chocolate. Those are my main food groups. I have to see two different oncologists a year for checkups. One here at my local hospital where I had chemo, and the other at the bigger training hospital out of town where I had radiation, and they both told me about the calcium, and both of them told me to take 1g of elemental calcium with 800 units of Vit D every day, and I have to get a bone density test every year. If had one, and didn't hear anything back so I assume everything is OK. I'll also supposed to do stuff with weights every day as well. I do the weight machines at the gym about once a week. If that. <g> Marilyn >I am Stage III with one positive lymph node, micromet. At 52 with ER/PR+ >and Her2- profile I do not feel the numbers support chemo, at [quoted text clipped - 6 lines] > flatly states the bc population is over treated and supports my choice. > The oncologist I saw for a 2nd opinion was not in agreement. Hello namesake! I made the same choice although the stats were a little stronger in my case, grade 1, 1 cm and no lymph node involvement. I was diagnosed at 40. The oncologist told me that chemo was optional. Since I was very highly oestrogen positive (8/8) I opted instead for Tamoxifen & Zoladex (as I was premenopausal). I too have met oncs who say they believe bc, especially in younger women, is overtreated. Two weeks ago I met my new onc and he went through my file. We had a chat about treatments and he made an interesting remark: "We are beginning to think that one of the reasons chemo is so successful is that in most cases it shuts down the ovaries." and the he added: "But chemo is one hell of a way to sht down the ovaries!" María Maria, Nice name, huh. You clearly meet the criteria with grade, size and node involvement to decline chemo with confidence. Sadly I was dx'd late in the game. I too was premenopausal and had a total hysterectomy in March to ablate estrogens. I tried Lupron but my circulating estrogens were still high and I needed a hysterectomy for other reasons. My onc checked my estrogen levels on Lupron q2weeks and told me I had ovaries of steel after having the 4mo injection of Lupron. And I agree, chemo is a radical way to shut down the ovaries! Wishing you many many years of wellness. > Hello namesake! > [quoted text clipped - 12 lines] > > María Maria wrote: I too have met oncs who say they believe bc, especially in younger women, is overtreated. Two weeks ago I met my new onc and he went through my file. We had a chat about treatments and he made an interesting remark: "We are beginning to think that one of the reasons chemo is so successful, is that in most cases it shuts down the ovaries." and the he added: "But chemo is one hell of a way to shut down the ovaries!" ==================================== Interesting. I wonder how many ways there are, to safely shut down the ovaries? In the five, ten or so years before menopause, when the ovaries are trying to stop sending eggs, ...... maybe the high estrogen levels (or FISH levels or whatever), which kick into overdrive & try force the ovaries to produce eggs, ...... may trigger Breast Cancer? Maybe the excessive estrogen can cause existing lumps & calcifications to become cancerous, ..... or can form new ones which are cancerous? Susan, Su_Texas my opinions PS I wouldn't describe chemo as "so successful". Perhaps "seems successful at all, in some cases". I never thought about it that way. Majority of younger women are estrogen negative though meaning their tumor is not sensitive to estrogen. But perhaps shutting down the ovaries has other effects? > In the five, ten or so years before menopause, when the ovaries are > trying to stop sending eggs, ...... maybe the high estrogen levels (or > FISH levels or whatever), which kick into overdrive & try force the > ovaries to produce eggs, ...... may trigger Breast Cancer? It might if that was what happened. At menopause, the ovaries slow down and stop producing both ova and estrogen. In response to the falling levels of estrogen the body produces more FSH - follicle stimulating hormone, which tells the ovaries to work harder. Eventually the ovaries stop, estrogen falls to the post-menopausal level, and the FSH goes "pedal to the metal", that's what the menopause test detects. I don't think there is any evidence of FSH itself triggering cancer. Otherwise you would expect a big step increase in occurrences around the time of the menopause, whereas the observed increase at that age is not much greater than at other times of life. Also estrogen-based contraceptives work by reducing FSH, and so would be expected to significantly protect against cancer, which they don't. Tim Jackson Thanks, Tim. Is there anything you know of, that could trigger breast cancer, in the five to ten years before menopause? The ovaries are slowing down. The body kicks into overdrive, trying to force the ovaries to work. ??? --------------------- I didn't take birth-control, so that's not an issue. In my early to mid-twenties, the doctors (gynecologist & surgeon) convinced me to try these pills, to help prevent breast lumps, ...... but the pills made me quite ill so I stopped taking them. ----------------------- I'm not sure I went through menopause. I was severely injured, which affected just about everything & almost killed me (brain-stem injury, spine injured top to bottom, ongoing concussion-type injury & "sudden tiredness", hip dislocated, facial injuries (severe TMJ), hearing & balance loss, broken arm, etc.). And now I know, congestive heart failure. Damaged the heart too. [That explains a lot, including why the docs said I was "too injured in too many places", backed off, refused me all medical care, & left me to suffer to death.] And my periods changed & then stopped soon afterwards. However, I was so injured & ill at that time, & still desperately seeking medical testing, diagnosis & care, that I couldn't focus on it much. The doctors claimed that severe injuries couldn't affect one's period. Probably another lie. -------------------- I wish we could trust the Medical Industry (doctors, hospitals, universities), & get the answers & info from them, that we are paying for. But we can't. This has proved a major betrayal. Susan, Su_Texas my opinions > Is there anything you know of, that could trigger breast cancer, in the > five to ten years before menopause? > > The ovaries are slowing down. The body kicks into overdrive, trying to > force the ovaries to work. It is not a particularly high risk period for breast cancer generally, compared to say the subsequent ten years, so I doubt that a cancer occurring at that time was causally related to he impending menopause. There are still a large percentage of cases of breast cancer (I think about 30%) where the patient has no recognisable risk factors. Basically, it just happens. I know everyone wants to find a cause, something or someone to blame for their misfortune, but often breast cancer is just a completely random event with no traceable cause. That said, it is likely that anything which compromises the body's general health and immune response, at any time in life, is likely to increase the risk of cancer and other diseases getting a hold. Tim > There are still a large percentage of cases of breast cancer (I think > about 30%) where the patient has no recognisable risk factors. > Basically, it just happens. ---------- In fact I was told it was *70%*. I fit into that group. No one in my family *ever* had breast cancer. I haven't smoked in 18 years, I'm not overweight, I never took HRT or birth control pills, my first child was born before I was 30, I don't eat a lot of fat, etc. etc. etc. As to "why me?" I was told that an American woman's lifetime risk of getting breast cancer is somewhere between 1 in 9 and 1 in 7, and I just happened to be the unlucky 1. (When I say "I was told," the person who told me these 2 things was the RN who led the breast cancer support group I attended.) Eva >>There are still a large percentage of cases of breast cancer (I think >>about 30%) where the patient has no recognisable risk factors. >>Basically, it just happens. > > ---------- > In fact I was told it was *70%*. I would suspect so, I should probably have said "at least 30%". I guess it depends who you listen to, obviously researchers into particular risk factors (often funded by manufacturers of particular treatments) would tend to push their statistics to the high side so they each claim a bit of the residue, which ends up getting very shrunk. But either way it's a lot of people. Tim I, too, had none of the risk factors, I thought. A doctor told me that if I had ever taken Premarin or such it had put me at risk. I had used the patch and the pill for about 18 months each. I read somewhere that an injury to the breast, even a biopsy could trigger cancer. I did have a biopsy in 88 on a cyst. That doc also said it could take as long as 15 to 20 years for a lump to get big enough to feel. Tim wrote: That said, it is likely that anything which compromises the body's general health and immune response, at any time in life, is likely to increase the risk of cancer and other diseases getting a hold. ==================================== You're right. The breast cancer seems to have taken hold & taken off, when I was injured in Jan. 1998. Since I was that injured, & being repeatedly refused medical testing, diagnosis & care, ...... my stress levels were off the charts, as (over the years) I kept desperately seeking any legitimate medical care that might still exist in TX or LA, ..... & struggling to stay alive, to survive this nightmare. The first lump (which later proved to be cancer, & which was there for many years before I was injured), ..... was small (dime-sized), thin & flat, just under the skin in the upper left quadrant, & never grew. The docs refused to biopsy it. And each year after the mammograms & ultrasound, the docs said that it was definitely not cancer. They lied. The second lump, which formed at the site of the injuries in the left breast (right below the nipple) was flat & thin, & quarter sized, when it first appeared in March 2000, ........ then it rapidly grew to about 6 by 6 by 2 inches, & was third-stage cancer, by the time it was removed in December 2001, ..... with the doctors repeatedly assuring me (until Oct. 2001), that it was definitely Not cancer. They lied. In March 2000, the doctors falsified reports (statements of results) to "prove" it wasn't cancer, & then backed each other up in this lie. The docs lied to me, & refused me care, ..... in Dallas (referrals at Parkland/Aston/SWMED, Baylor, & private clinics), Houston, Shreveport (referrals at LSU, Willis Knighton, Schumpert), Tyler (referrals at ETMC), Longview (referrals at Good Shepherd, Longview Regional, private clinics), & others. Over the years, there was basically no way to get through the docs' determinedly dumb & dastardly acts, in order to reach any legitimate medical care for the injuries or new breast lump, ...... but I had hope & kept trying. [In effect, the docs are BLOCKING OUR ACCESS to any legitimate testing, diagnosis, & medical care, ..... Not helping us.] If the doctors had acknowledged the first lump, done a biopsy as I asked (removed it), & checked it for cancer, ..... then I could have had both breasts removed at that time, ...... & probably no drug treatments at all, no chemo, no further damage done. Instead of doing the sane, rational, & practical things, the docs tried to act as stupid as possible, to do as much harm as possible, to cover each others a*ses in this, ...... & to churn my accounts (health insurance & bank account) with years of worthless tests, consults, & run-arounds intended to lead nowhere good. After the cancer is diagnosed, these docs can no longer churn your account like before, ..... so they've little incentive to diagnose you correctly or pass you on. And unfortunately, a lot of bad laws prevent them from being held accountable for wrongdoing, from being sued. We need to be able to sue these moral monsters (bad docs) & win, for the harm they knowingly choose to do to us. Many times daily, I stop to hope & pray, that the bad docs who harm, face only justice without mercy, both in this life & the next. They have no right to feel entitled, to cause the overwhelmingly-massive levels of pain, suffering, & loss, the destruction that they do. Susan, Su_Texas my opinions |
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