Bilateral mastectomy short / long term side effects and QOL

dragonsnake · June 2016

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. ? How to prevent PMPS AND LYMPHEDEMA?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 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

xxyzed · June 2016

I can't advise on the long term side effects but I have just had a bilateral mastectomy with lymph nodes removed under one arm one week ago. I still have drains in both sides but can use my arms just fine to 90 degrees. I'm not allowed to lift them higher until the drains come out. I suspect I will need physio to regain full range of motion on my lymph node side but have been told that wil eventually come. My chest feels fine but I have big numb lumps under my arms which is swelling waiting to come down. Mine was skin sparing so it looks pretty ordinary but long term I can fix that. I'm a high lymphadema risk because of all the lymph nodes removed. I don't think lymphadema is much of an issue if you are leaving the lymph nodes in. Hopefully someone with long term experience will be along to assist

dragonsnake · June 2016

xxyzed, thank you for responding to my cry and sharing your experience. I wish you an easy and uneventful recovery. Please take good care of yourself.

I decided to do an MRI and try to figure out how much junk is in my other breast, and postpone a surgery for now.

hugz4u · June 2016

I did double because my cancer was big and the kind to jump to their side.no pain but I do get Charley's horse in my BC side lat. if I address it asap it goes away. Glad I did it, if u get nodes out even one you will want to visit the lymphedema thread to get educated as docs will likely poo poo you about it.mine laughed at me and said I would never get it. I did

Mine was lbc multifocal

Xxyed. jump over to that thread. Knowledge is power

Susie123 · June 2016

I had a BMX with node biopsy, node negative, with tissue expander reconstruction and then silicone implants. I had DCIS and IDC. I'm six years out and have no side effects at all. Hope that helps

wallycat · June 2016

I had BMX and sentinel node biopsy (5 nodes). I am starting year 9. I have had zero issues with pain (even the day after surgery, I needed zero pain meds--doc was very puzzled). It took about a week for range of motion with the lumpectomy (initial surgery) and no issues with range of motion after BMX. I think 3 months after, I may have popped one ibuprofen, but otherwise, have not required any pain meds, have no range of motion issues (I can still do my back bends and various yoga poses that I have always done). As the nerves re-grow, I am getting sensation in my chest (not the sexy-good kind), but still no pain, knock wood.

Still gets to me some days about the concave look, but I do not regret my decision for BMX. I know there are some gals who have had pain from the get-go and it breaks my heart. Being told you have cancer is bad enough....but at least I don't have that issue.

Sassa · June 2016

I had a modified radical mastectomy with SNB on my right side on Nov 17, 2006. I had a simple mastectomy on my right side six months later.

I eventually decided to do reconstruction with silicone implants in 2009. I know you don't want reconstruction, but it is part of my last 10 years.

In any case, my biggest issues after the mastectomies were problems with my shoulder and neck. I feel the problems were ongoing from the problems I was already developing from being over endowed with breasts.

However, I had physical therapy and faithfully did my exercises to strengthen and regain flexibility in my upper body.

Two years after the mastectomies, I was pain free and in good shape. The reconstruction process was just a 6 month blip and was also pain and problem free.

I have to say my QOL at this point is excellent and I am physically in better shape than before my mastectomies.

I would like to comment about your math and science skills.

I don't know if you are going to have chemotherapy. I had four AC (one AC infusion every three weeks), also 1 year of herceptin.

The four AC temporarily destroyed my cognitive ability. From being able to solve quadratic equations in my head, I was reduced to needing a paper and pencil or a calculator to do the simplest addition and subtraction. I developed a language problem where I could think of a word, but wouldn't have the slightest idea of how to start spelling it. I also had problems trying to organize tasks.

The language skills and ability to organize have come back. However, my math ability never really came back. I can now do very simple math in my head, but I really have to concentrate and use a calculator to solve complex equations.

windingshores · June 2016

I had mastectomy on cancer breast first then second mastectomy a couple of months later. I had a paravertebral block which elimimated the need for pain meds. I'm back to Tai Chi and have no pain issues, only very slight sensation of tightness every once in awhile. No lymphedema at all. You have probably already moved ahead.....

dragonsnake · June 2016

Thank you very much for your thoughtful and kind responses. I'm still in limbo. MRI did not see my DCIS around the lumpectomy cavity even though we know it's there because I have no clean margins. There are two additional very small nodules that may or may not be cancerous 1 cm from the cavity - they do not show characteristic signatures for cancer, but malignancy cannot be ruled out. The other breast shows some cysts. I talked to the radiologist, and she said that nothing can be ruled out due to the fact that my DCIS does not show up on mammo or MRI. MO suggested UMX because they already removed almost 1/2 of the breast, but was against BMX because of no medical necessity. The radiologist who did the MRI understands my desire for BMX.

Sassa, I'm very grateful for you sincere and honest message, I understand how difficult for you is to loose some of the cognitive abilities. I had an episode three years ago when I temporarily lost my abilities to solve complex problems: I was able to solve low-division math and physics problems, but could not do problems for my upper-division classes. I need to be able to solve differential equations, take integrals, understand advanced topics, do original research, etc. A loss of these abilities means a loss of employment for me. As I see it now, I may choose life and sacrifice who I am, or risk metastatic cancer. Although they are not mutually exclusive.

dragonsnake · July 2016

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.

Bilateral mastectomy short / long term side effects and QOL

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