Bilateral mastectomy short / long term side effects and QOL
I need help to decide on treatment. I was originally diagnosed with 3 cm DCIS, high grade, comedo necrosis. I did a left breast lumpectomy, The original extracted piece had two involved margins and 4cm DCIS. Surgeon cut around the piece , the originally bad margins were cut out, but the margin on the good side showed more DCIS. I did a second lumpectomy, the newer 4.5 cm DCIS was found and excised. I'm waiting for details about margins; report is confusing. I was thinking on doing a left mastectomy or a bilateral one after learning that my DCIS is multifocal, and was not picked up as such on the mammo. My surgeon did not want to do MRI because it's not very conclusive, according to him. I always had pain and burning in both of my breasts. I do not want radiation due to my previous expose and long-term side effects. I cannot do hormonal treatment due to a big uterine fibroid + many small ones, although I might consider a total hysterectomy. My question is: what are the long-term side-effects of a simple BMX without any reconstruction in terms of pain , neurological symptoms, numbness, inability to use hands, lymphedema, etc. ? I really do not care about the looks, but I'm very concerned about my quality of life: I do not want to be in pain, with lymphedema, mentally and physically non-functional. I have a very intellectually demanding job, I cannot afford not being able to concentrate. I need to be able to do advanced math and physics at high level. As I see it now, I can keep cutting pieces of my breasts as they become cancerous, or cut out everything at ones in a hope that that's will be it. Any advise on this matter will be very helpful. Thank you
Comments
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Good questions! I'm not a doctor so I'm sure they could provide more info...but for me, short-term side effects were pain, discomfort and some loss of mobility in my upper body. But it was manageable and for me, these resolved pretty quickly. I'm not quite as flexible anymore but I think that had some to do with the lymph node removal. Also, it's better when I stretch and exercise. Reconstruction is an issue, but again, tolerable - I did TES and then implants. Long term effects have been mild discomfort (related to TES not really the implants) loss of sensation and the impact on the libido, and cosmetic concerns. I think lymphadema may be more closely associated with the lymph node removal than the mastectomy but ask your surgeon. In any event, I had 11 nodes removed and knock on wood, haven't had issues. Good luck with your decision!
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It is my understanding that if you have lumpectomy, you must have radiation too. But if you choose mastectomy, and no invasive cancer is found (only DCIS), then no further treatment is required. Some surgeons will insist on doing SNB and some will leave it alone. Some will recommend tamoxifen but most seem to be fine with skipping it in cases of pure DCIS, unless you are at higher risk for some other reason.
Since you posted in this section, I presume you are not considering reconstruction, which would add a whole new set of issues. Most of the people that have MX only with no recon heal pretty fast and most say it was not anywhere near as big a deal as they expected. The majority of the issues you mention are caused by the other things such as chemo, radiation, anti-estrogen meds, and so on.
My only concern with having the healthy breast removed as well (I did not do that) is to make sure your surgeon will not take any lymph nodes on the good side. You may have to argue for this. They like to take at least one sentinel node "just in case" any cancer turns out to be hiding in there. But if you have even one node removed then you will have the aggravation for the rest of your life of not being able to use the arm for blood pressure, shots, blood draws and so on. These things can be done on a leg, but many here have said how difficult it is to get the docs to do it that way.
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Even if they take a node on the prophylactic side, you may still be told to use it--BUT if they take a node, you're at risk for LE on that side, too. Blood draws from the foot are generally both more painful and more likely to cause complications.
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Everyone responds differently to surgery, so it is hard to predict. I had one MX, and I took a month off work for it. Mainly cuz I had a ton of sick days,, ,so I took an extra week. My QOL,,,, almost 3 years later,,,, there is still some residual numbness in the armpit area. The scar area doesn't bother me at all. I did develop LE, but it is hard to predict who will and who won't. I work in the medical field and I don't believe that it has affected my concentration or anything like that.
I also had a total hysterectomy due to fibroids. It was doing robotically and that was great. 3 days later, I was up and going out to lunch.
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Oh, and there is tons of helpful info on breastfree.org - I wish I had found it before my surgery!
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You guys cannot even imagine how valuable your advices are. I'm overwhelmed and humbled by your support. Thank you
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i had a bmx with 6 nodes removed and no reconstruction. I have no lymphedema and i never did do any exercise. I actually never had pain either. I took a couple of plain tylenol the first day or two. I had bmx to be balanced and to avoid radiation.
It feels weird with no breasts and tight for a few months but was never as bad as i thought. Tha drains were a pain but that was just because my surgeon was stupid and didn't place them well. I have only wore breast forms once for my daughter's wedding but otherwise i don't bother.
I think most people are fine and the most complications occur with reconstruction issues.
Best of luck to you
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I am considered medically fragile, but had no problems with two mastectomies. My chest felt tight for a couple of months, but that's about it. I do Tai Chi a lot and my chest feels close to normal now in terms of tightness.
I had three sentinel nodes taken and do have blood pressure, blood draws and IV's on that side with no problem. I actually wanted an SNB on my healthy side but my surgeon doesn't do that.
One tip: I had a paravertebral pain block for both my surgeries, which kept anesthesia to a minimum and meant I needed NO pain meds after surgery or for 3 days.
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I had bilateral mastectomy exactly a year ago last saturday and ended up in hospital on that anniversary with infection in one of the old scars. December last year I had my first bout of infection and this is now the 4th and worst.
It has now been decided on today that they will open up that scar and my port scar and check if there are any foriegn objects such as a stitch, clean it out then sew me back up and hope that cures the problem.
Other than that I have been doing so well. Off to a tropical Island 3 weeks ago, showing my dog and entered for a dressage comp next Wednesday for which I have had to scratch.
Anyone else had to have this done and how long was the healing? I do want to get on with the rest of my life.
Karenaus
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Good Morning!
Is it typical to do a SNB on the prophylactic breast with a DMX? I have IDC in my left breast and having a DMX June 29th and I am also scheduled for a SNB on both sides. I guess I did not expect that. Is that "normal"?
One more question... what is the difference between a DMX and BMX?
Thank you!
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DMX = double mastectomy
BMX = bilateral mastectomy so no difference. MD's will say bilateral
Not sure about the SNB on the prophy side,,, hopefully someone will come along and answer that. They might be doing it just in case,,, since you are having MX on that side in case they find something on the pathology that they did not see on imaging.
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Before my BMX, I had the blue tracer dye injected on both sides (my cancer was on the right side). My BS said if she found any hints of cancer on the left during surgery, then she would be able to find and test the sentinel nodes on that side right then during surgery.
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Hi, I had BMX June 2, just 1.5 weeks ago, so no news on long term SEs.
I had cancer on the left hand side. 2 nodes were removed, so no blood draws/blood pressure/shots allowed on that side anymore. I have not developed LE, but I'm early out, of course. I have to keep an eye on it from now on.
The right hand side was cancer-free, so the MX was preventive only. No nodes were removed on that side.
I can tell you pain wise: I have had more pain after hard workouts! DOMS (Delayed-onset muscle soreness) hurts worse than BMX with no recon. I'm a little stiff on the left hand side, but it's not bad. I'm not picking up anything heavy right now. At the moment, the two most annoying things that annoy me are: doors, and the itching where the drains were taken out. I itch so intensely that it's hard to concentrate. It's like being covered in poison ivy! I hope that the itching goes away soon. Taking Benadryl seems to help a little. As for doors, you realize just how heavy a stupid door is when you go into a business or restaurant. I'm not supposed to pick up 10 pounds, but pulling those horrible heavy swinging doors open with sore arms when you're not supposed to be doing heavy lifting, is a chore and a half! How do handicapped people stand it?!?! They will put a wheelchair ramp in front of a door that only a strong able-bodied person could possibly open. I never thought of that before my BMX. There should be a law!
Stupid horrible doors!
I haven't noticed any tingling, numbness, or nerve issues in either arm or hand. I'm an artist and I can draw just as well as I ever did. My concentration is only affected by the ITCHING, oh the horrible, horrible itching.
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Hi I also had a prophylactic SNB on non cancer side and now have some regrets. I have possibly developed lymphedema on that side now. I'm seeing a specialist in 2 weeks. Keep in mind that you will not have a good side for blood draws etc. Of course my doc told me that I would not get it because only one node was removed but we all know that's not true. Its one thing to get lymphedema on the side that had to be removed but another to get it in the non cancer side. Just something to consider that I didn't. Good luck.
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Hi, dragonsnake! It sounds like you are considering preventative mastectomy?
August 2010 I had bilateral mastectomies L- modified radical R- simple mast. With a few LN removed. The R side simple mast. healed quickly and after two months did not notice any problems with functioning.
October 2010 had redo of both masts. L- redo mod radical, with extensive dissection of my armpit to clean out the area R- redo to modified radical. I've had a great deal of problems with my L arm due to the extensive messing around with the nerves and lymph in my armpit. However, my R mast. site and arm are just fine despite having a mast, then redo to modified radical. I do have some numbness in my armpit, yet don't find it bothersome. No lymphedema, mobility problems or pain. I am active with the R arm and have not noticed any weakness or swelling.
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I had bmx almost 2 years ago and other than missing my nipples, a lot, I have no long term side effects. I did reconstruct. I also had my uterus removed at age 45 due to fibroid tumors and that was the best thing I ever did. I kept my ovaries, which in hindsight may have been a bad choice because I went through a horrible menopause and at age 52 was dx with highly estrogen positive bc, but getting that painful, fibroid filled uterus out was fantastic.
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I also have fibroids; the biggest one is about 8 cm. I'm also considering a hysterectomy after I figure out what to do about my breast cancer.
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I totally commiserate on missing having nipples.
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Here is the update on my condition.
After many consultations and many considerations taken into account, after two lumpectomies that failed to achieve clean margins, and an MRI that showed more suspicious spots in the DCIS breast and high- background signal in the contralateral breast, I proceeded with a double mastectomy, no reconstruction. I had a SNB on the cancerous side only; two lymph nodes were removed during the surgery. I requested to be given a toradol/ketorolac pre-incision. I was given ketorolac as a pain-killer after the surgery (every 6 hours for the first 24 hours) . I did not take opioids, only extra strength Tylenol afterwards.
I had my drains removed on the 7th day. I have a reasonable range of motion, within 90 deg, but cannot dress myself independently. My left hand hurts and feels weak, my shoulder is sore, but no apparent swelling. My chest swells by the end of the day, though. I do a modified bikram yoga for the muscles in my back and legs, without moving my arms beyond 90 deg. I also went for a walk several times. . I still do not have my pathology report because they are waiting for my previous pathology slides to be returned from UCSF where I had my second opinion.
I really wouldn't be able to go through all this the guidance and support of wonderful ladies on this board . THANK YOU for being there for me, for your wisdom and kindness, for your hard work educating other members, and your relentless following of all relevant research.
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dragonsnake: glad you are on the road to recovery. Hoping you get your pathology results soon!
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I got my pathology report: nodes are clean, some DCIS around the lumpectomy site, no IDC found in either breast, seemingly clean margins. This is the best I could hope for. My husband thinks that I needlessly cut out the breasts, but I'm happy if I can avoid rads and hormonals. I didn't do well on the pill - was rendered non-functional, foggy minded, with restless leg syndrome after only 4 days on estrogen. I realize that tamoxifen and AIs can be different, but still... Well, I hope I bought myself some time, but I fully realize that the ugly recurrence beast can raise it's head any time, and BMX is not a cure but a chance .I'll see my MO in a couple of days, and figure out if I need some further treatment , including a possible hysterectomy for fibroids and hereditary uterine cancer, and how I can be monitored for possible recurrences and mets. I guess it's not easy to find someone who is willing to order MRIs on the regular basis for me.
Thank you again for sharing your experience and expertise, for being there for me, for your help and understanding.
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Great news!
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I miss mine to
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Congrats on the great pathology! I did reconstruct following BMX (one side had no cancer) with one step implants, but lost one to post op staph infection. I think prior posters covered most concerns, but one issue I had was arm/shoulder pain and restricted range of movement starting about 5 months post op in the cancer side (which ironically was the side with the implant that stayed--it was the non-cancer breast that lost the implant due to hospital acquired infection.) For the first several months all felt generally fine, but then the pain and stiffness in the cancer/reconstructed side. I found that hot showers/shoulder rolls/Salon PAS patches helped greatly, and after a few months of babying the bad side including avoidance of picking up/carrying anything more than a pound/doing shoulder rolls in a hot shower and a few times during the day all was well. No way to know if the problem was due to the reconstruction, or perhaps more tissue removal on the cancer side. In any event, with all of the info on Post Mastectomy Pain Syndrome, I felt very fortunate that these relatively easy steps brought me back to near normal. I had no issues in the "deconstructed" side. I think you made a thoughtful decision that will hopefully mean that you are done with this!
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Dragonsnake, I hope you're continuing on your road to feeling good. I'm glad the BMX has been relatively easy for you thus far. I had mine over a year ago. I was fortunate, and didn't need an aspirin or ibuprofen, let alone pain meds. And I was pretty much up and about the day after surgery (albeit slowly).
I have large uterine fibroids, too. The largest one I have is 13 cm, and two others that are 8 cm and 7 cm, plus a bunch of small ones. I'm taking tamoxifen, and I know there are quite a few ladies on this forum who have fibroids who are also taking tamoxifen. I don't understand why fibroids would prevent you from taking an estrogen prohibitor.
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Hsant, thank you for checking in with me. I learned that tamoxifen is an agonist for uterus, hence uttering cancer is amongst it' side effects. I had two uterine lining biopsies already due to suspicious cells in my pap-smears. Also, fibroids tend to grow on tamoxifen, because uterus recognizes it as an estrogen-like substance.
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