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Medical Forum / Diseases and Disorders / Breast Cancer / June 2008Medical Merry-Go-Round: Bad Margin, Peek-A-Boo Tumor
Got my lumpectomy Monday, doctor called yesterday with pathology. Good news: nice clear sentinel node biopsy. Bad news: In her quest for cosmetic perfection, she missed the spike coming out of my 1.7 cm tumor. This was very visible to little old me on the ultrasound that gave the first view of my tumors. So obviously I need another surgery for that. I'll hammer home, again, that I'm totally unconcerned about cosmetics, and hope someone's listening this time. Even worse news: the pathology said there was no cancer in the second mass she took out. Initial biopsy and pathology said this was a 5 mm IDC with same characteristics as the bigger one. The MD BS came fast and thick: "Maybe the biopsy sucked out all the cancer", etc. However, it was visible a couple hours before surgery, when another doctor jammed a wire through it. Obviously, I must now think about a mastectomy. Not because of the spike; it's way up there by my armpit and it's clear what to do about that. Because of the AWOL little tumor. Monday I'll see about a second opinion. Les > Got my lumpectomy Monday, doctor called yesterday with pathology. > Good news: nice clear sentinel node biopsy. Bad news: In her quest [quoted text clipped - 15 lines] > that. Because of the AWOL little tumor. Monday I'll see about a > second opinion. --------------- What's a "spike?" I think the second opinion is a very good idea. You sound like you don't have much confidence in your current doctor, and that's not a good situation. Eva > > Got my lumpectomy Monday, doctor called yesterday with pathology. > > Good news: nice clear sentinel node biopsy. Bad news: In her quest [quoted text clipped - 26 lines] > > - Show quoted text - Thanks Eva, I'm just calling the tentacle I saw sticking out of my tumor a spike. It's still there, all by its lonesome. My other tumor's still there too, smashed to smithereens in some unknown location. Shocking that what is so clear to me could escape my doctor's notice. Of course she's still stupidly relying on scamograms, which are always opaque. The last ones showed the localization wires and nothing else. MRI was counter-productive too. Why do doctors keep clinging to tests that don't work, and ignore the only one that does, in this case ultrasound? Today will look around for a second opinion doctor. Les > > "downwinder" <desertny...@cwo.com> wrote in message > [quoted text clipped - 46 lines] > > Les Oh Les, I'm sorry that you have to go through this again. I am also finding that I have to manage my own care, and it's really tough when you're dealing with a scary diagnosis and a system that is inherently fragmented. Currently, I'm dealing with the whole axillary web syndrome, which per my surgeon is common (yet never told to me until I developed it) but--and I pushed for this and scheduled it--I got hooked up with a wonderful lymphedema massage therapist, who says I don't really have lymphedema, but some issues due to the web and we meet weekly and she's been a huge help. If I didn't push for her, I'd be in pain, clueless, with a swollen arm. And the whole genetic thing. They are pushing for my husband to be tested, yet federal protection is being phased in over 18 months-- protection against genetic discrimination in health care won't be law until May 2009, in employment November 2009--yet Bush signed the law 2 months ago. Since neither daughter will be 25 (minimum age for testing and screening) for another two years, why should my husband open himself up to genetic discrimination before he's federally protected-- especially as the results won't make a clinical difference for either him (we are well aware of his risk for prostate cancer) nor my daughters? Les, I am a month out of my surgery now, not working ( a mixed blessing) and still get tired at times. I keep using the metaphor of many hurdles: my beloved horse died in January, and he was quite the jumper in his day, and when we set up a jump course, no sooner would he clear a jump, then another would loom...That's how it feels to me. Get over the surgery, wait for the path, get the path, wait for the oncogene, get the oncogene, schedule the oncology appointment, develop the axillary web, deal with the risk for lympedema and pain issues, throw in the genetic risk stuff, wait for the results, and radiation looms. It's a jump course, and sometimes I get tired between the jumps. As usual, your gut reaction about the "spike" was correct--you know your body. I've had to explain my course to every knew consult I meet-- they're rushed and no one has done a correct summary of the chart yet (not even my medical student who read all my confidential material....) Here's a tangent, but a happier note, the photographer at my daughter's wedding posted some great photos on her blog: Http://www.jenleephotography.wordpress.com So, they cheer me up. Hang in there. Look at how far you've come. And, re: cosmesis--as someone who was told that "I didn't give her much to work with"--it looks just fine to both me and my husband, and we're the ones who live with my body on a daily basis. Best wishes. Judy On Jun 16, 10:10 am, downwinder <desertny...@cwo.com> wrote: > On Jun 14, 11:24 am, "Eva" <EvaDStructio...@NOverizon.net> wrote: ... > Here's a tangent, but a happier note, the photographer at my daughter's wedding posted some great photos on her blog: Http://www.jenleephotography.wordpress.com Yebbut where are you??? Mary > On Jun 16, 10:10 am, downwinder <desertny...@cwo.com> wrote: > [quoted text clipped - 10 lines] > > Mary Mary, I did wear the stunning blue dress, and I have private photos from family members, but I didn't make the cut for the blog....She did photograph me and they'll be getting their DVD soon. I wore this gorgeous dress--not my style, which runs to jeans and tee shirts--as a message to everyone there that I was not to be pitied (because there were some family members there who were exuding that message.) It is layers of silk, fitted to the hip, then cut on a bias. Over the weekend I returned all of the dowdy dresses I had bought as back up. Judy "judy.n" <judy.nudelman@gmail.com> wrote in message news:29fd70ea-6472-4dfe-a299- ... > Mary, I did wear the stunning blue dress, and I have private photos from family members, but I didn't make the cut for the blog....She did photograph me and they'll be getting their DVD soon. I wore this gorgeous dress--not my style, which runs to jeans and tee shirts--as a message to everyone there that I was not to be pitied (because there were some family members there who were exuding that message.) It is layers of silk, fitted to the hip, then cut on a bias. Sounds lovely. I'm having to look for elegant clothes for our cruise, it's hard work! > Over the weekend I returned all of the dowdy dresses I had bought as back up. LOL! No-one should ever wear anything dowdy - yet so many people do, as though they want to hide. Mary > > "judy.n" <judy.nudel...@gmail.com> wrote in message > [quoted text clipped - 27 lines] > > - Show quoted text - Hi Judy, Yes, I knew this cancer thing would be hard, but what a plethora of unforeseen problems! Everyone said go for the specialist, who knew she'd be such a deceitful disaster. I learned the name of a cancer expert for a second opinion, but miles of phone lines to his town burned up in a forest fire, perhaps along with his clinic. So that's out. Then I called the poverty clinic with my physicians assistant. The office lady said they'd send for records. Also gave me a lecture for going to the specialist, when they first referred me to a back surgeon with a cancer sideline. I may have to go back to him on my knees and ask him to pick up the pieces. Tomorrow I have a follow-up appointment with the botcher. Don't want to go, but with my limited options, I plan to tell her that the only way I want the second surgery done is to go back and carve golf-ball size pieces out of BOTH areas. In other words, what she said she'd do and didn't. She'll probably refuse, having indicated Friday that nothing should be done about the AWOL tumor. Am taking Hublet with me this time, and ask around to see if any neighbors have a tape recorder. Judy, I developed axillary web too, almost a week after surgery. Yesterday it felt like my armpit was in a vice. I have to deal with it on my own; Hublet is leading me in yoga exercises. Tried ice last night and two ibuprofens and it's better this a.m. Ugh, it can last 6 weeks? I've never gotten tired; took a 2 mile walk day after surgery and in 3 days went back to steep off-trail hiking. I hear radiation will make me tired; it'll be interesting to see if something in this world can. I'll also ask tomorrow if Oncogene DX test can be ordered. I'd like to talk to a genetic counselor too, having had two different reproductive cancers and a grandmother with ovarian cancer, and all the risk factors. Judy, tried to look at your wedding pictures, but my ancient computer couldn't handle it--had to re-boot. What little I saw looked very elegant. Les > > > "judy.n" <judy.nudel...@gmail.com> wrote in message > [quoted text clipped - 71 lines] > > Les Les, I wrote a long reply and then lost it: here's what has helped me-- advil, my surgeon recommended ice (but I didn't use it) I do the stretches recommended by the American Cancer Society http://www.cancer.org/docroot/CRI/content/CRI_2_6x_Exercises_After_Breast_Surgery.asp And this other group: http://www.imaginis.com/breasthealth/lymphedema.asp Also, here is a PT article on axillary web syndrome: http://findarticles.com/p/articles/mi_qa3946/is_200401/ai_n9370189/pg_3 My routine is to stretch three times a day, and I do the lymphedema massage twice a day (because it's soothing). Also, squeezing a soft ball and bending your elbow, squeezing a nerf football in your armpit, keeping your arm up on soft pillows. You need to use the arm, despite the pain, but avoid extra heavy lifting. The party line on axillary web syndrome is that it starts at day 10-14 post op and lasts up to 3 months. I did get some extra webs, even after doing all the "right" things. Despite the fact that I could only feel them in my arm pit, it was my painful hand that made me crazy. The lymphedema massage therapist wrapped me yesterday, and it really helped soften them. She said that some people have them go away over night, and some people have them linger. I don't really have the dreaded lymphedema, but lots of scared lymph and veins leads to a compromised state--and it hurts and it makes you crabby on top of everything else. I also saw a PT, and will see her once again in follow up, but the lymphedema massage person is amazing: she did some deeper tissue work yesterday along with the wrap and life is much better today. Les, hang in there. My surgeon recommended lots of ibuprofen. I kind of slacked off on it, but it does help. Judy "judy.n" <judy.nudelman@gmail.com> wrote in message news:651c318d-98e9-4208-9d8a- ... > My routine is to stretch three times a day, and I do the lymphedema massage twice a day (because it's soothing). Also, squeezing a soft ball and bending your elbow, squeezing a nerf football in your armpit, keeping your arm up on soft pillows. You need to use the arm, despite the pain, but avoid extra heavy lifting. Using the arm and even heavy lifting becomes the norm, the pain becomes part of Life and not intrusive - promise. > The party line on axillary web syndrome is that it starts at day 10-14 post op and lasts up to 3 months. I did get some extra webs, even after doing all the "right" things. Despite the fact that I could only feel them in my arm pit, it was my painful hand that made me crazy. If it continues you'll get used to it :-) > Les, hang in there. My surgeon recommended lots of ibuprofen. I kind of slacked off on it, but it does help. I take co-codamol, diclofenac and occasionally codeine for other pain but they never affect the arm pain. In fact, the arm pain isn't important, compared with the other. Be glad for small mercies, Life isn't perfect :-) Mary Your daughter was a beautiful bride and it looks like you had great weather too! " > Your daughter was a beautiful bride and it looks like you had great weather > too! > > " Thank you: hot but sunny, and I got a really wonderful son-in-law in the process. And their puppy behaved herself reasonably well during their honeymoon. His parents are throwing the Chinese banquet in two weeks, and that should be an experience. His mother is a tough cookie: a PhD in cytogenetics, who is really rough to deal with. I was telling his big sister--who is a family doctor whom I trained when she was a resident, and now has 6 month old identical twins--about my situation, because I wanted to tell her in person, and his mom overheard and said "Why are you upset about breast cancer? They cure that these days!". I wanted to say: "Was I talking to you?". Basically when Sara and Seamus re-connected--they were tennis counselors at a day camp--about 6 years ago, she was finishing high school and he was starting medical school--a bit of an age difference, which has shrunk as she's gone through college and is working now, while he finishes his residency--Seamus essentially moved into our house, and we've enjoyed having him there. He's a rock of support for both daughters. (And he watches sports with my husband--the son he never had....) Got good news about the genetic testing yesterday, so life is moving on, and out of limbo. Judy > > Your daughter was a beautiful bride and it looks like you had great weather > > too! [quoted text clipped - 24 lines] > moving on, and out of limbo. > Judy Judy, My axillary web problem went completely away after only a couple days. Ice really helped, that was the turning point! I'm pain free as long as I wear a bra. Tuesday I put another box on my beehive. A bee got in my hair and I ran quite a distance, waving and jerking my arms around. I paid no price at all for that. Went back to the surgeon yesterday. I'm convinced after what she said, and looking at the pathology goobledygook, that I either accept her word that she removed the entire biopsy area on the missing small tumor, or get a mastectomy. So Tuesday she's removing the bad margin on the big tumor, and then I'll get whole-breast radiation for 6 weeks. Ugh, Ick, Grr! So you're getting radiatio too, Judy? Congrats on your good genetic news, Judy. I asked the doctor about Oncotype DX. She'll talk to the chemo doctor, but said she sees no reason so far for chemo, so it's uncertain I'll get that test. It doesn't test for ovarian cancer. I recommend ice to everyone with axillary web syndrome! Les On Jun 18, 5:57 am, "judy.n" <judy.nudel...@gmail.com> wrote: > On Jun 17, 11:27 pm, "xela56" <noacco...@nw.nl> wrote: , > Tuesday I put another box on my beehive. A bee got in my hair and I ran quite a distance, no veil??? ... > So Tuesday she's removing the bad margin on the big tumor, and then I'll get whole-breast radiation for 6 weeks. Ugh, Ick, Grr! It's not so bad. I had radiation and got sore and swollen but it gradually subsided. Not everyone gets tired (I didn't), in the same way as not all chemo recipients are sick. Don't anticipate what might not happen :-) Mary > On Jun 18, 5:57 am, "judy.n" <judy.nudel...@gmail.com> wrote:> On Jun 17, 11:27 pm, "xela56" <noacco...@nw.nl> wrote: > [quoted text clipped - 5 lines] > > no veil??? Mary, I don't put on my bee suit unless I'm rummaging around in the hive or taking boxes off to extract honey. Putting a box on isn't usually a problem. Getting a bee in my hair, buzzing in my ear, always panics me. > > ... > [quoted text clipped - 10 lines] > > Don't anticipate what might not happen :-) I'm freaked out about getting radiation because I'm an atomic age downwinder and feel certain that radiation got me into this situation. Plus I'm getting whole left breast radiation and am concerned about my heart and lungs. Two grandparents died of lung cancer. I guess I'm just a worrywort. I doubt radiation will make me tired either, nothing else does. Les > Mary > > Tuesday I put another box on my beehive. A > > bee got in my hair and I ran quite a distance, > > no veil??? Mary, I don't put on my bee suit unless I'm rummaging around in the hive or taking boxes off to extract honey. Putting a box on isn't usually a problem. Getting a bee in my hair, buzzing in my ear, always panics me. > If that's the case surely it's better to be safe rather than sorry? I wore a veil from entering the field where the apiary was - they don't respect barbed wire fences and gates :-) A bee in my hair wasn't bad but a bee in the eye ... :-( Not worth the risk. > ... ... I'm freaked out about getting radiation because I'm an atomic age downwinder and feel certain that radiation got me into this situation. Well, cancer was around before the atomic age ... > Plus I'm getting whole left breast radiation and am concerned about my heart and lungs. Two grandparents died of lung cancer. I guess I'm just a worrywort. Please try not to worry - it won't help anything. > I doubt radiation will make me tired either, nothing else does. Good! Let us know how you get on, Mary Les > Mary |
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