Looking for your long term issues w bmx without recon

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Anonymous
Anonymous Member Posts: 1,376

I am still in the early steps (MRI today) as I was diagnosed last week. But I'm a planner, and thinking about pros and cons of possible treatments helps me.

I want to consider bmx if it is an option for me. I would not be doing reconstruction (I'm pretty flat shaped and have been all my life) My husband agrees that it's my choice but thinks I am underestimating the possible complications of mastectomy and I would regret it later.

Heres what I'm looking for: Honest experiences with the recovery and, especially, LONG TERM COMPLICATIONS of bmx without recon.

I'm not looking for the emotional as much as the physical. What are the long terms physical effects I need to weigh. Please tell me how long ago was your surgery, and please share any experience and how you feel about mobility, pain, nerve damage, lymph issues, etc.

And also if you had bmx and a recurrence, how long after?

I'm 49 years old.

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Comments

  • ravzari
    ravzari Member Posts: 277
    edited May 2017

    Recovery for me was pretty easy; I just had two drains that were out in a week.

    The worst part was dealing with lack of range of motion for almost 8 weeks (can't really lift your arms above your head) and having to wear a compression vest for 4 weeks; my PS ordered 4 weeks, but it wasn't comfortable for me to sleep without it for closer to 8. Ugh, and back sleeping; it can be uncomfortable to sleep on your sides for a couple of months, and I'm a side sleeper, so I definitely didn't like the 8 weeks of back sleeping. I managed, but I sure didn't like it.

    I can't say I've had any long term complications. My surgery was at the end of June 2016. I still have some semi-numb areas on my chest, but nothing totally numb. I can feel cold, heat, pressure, and touch, but some areas are less sensitive to pain (so, like, scratching the area I can't feel the scratch as much). The numbness doesn't seem to be in the skin so much as in the tissue underneath it, which is a kind of strange feeling that's hard to describe. It's not bothersome though; I can still feel where shirts touch my chest and things like that.
    I only ever really notice it when I'm doing chest centered weight lifting or if I flex my pecs as it feels almost like the tissue above the muscle is 'asleep' (no pins and needles, I'm just aware that it's kind of numb).

    The numbness or partial numbness can be a problem for some women if their chest was a big erogenous zone for them; for me it never was as I had chronic, severe pain from fibrocystic breasts, so it's not a problem for me to be kind of numb on my chest. For other women, the lessened sensation may be a bigger deal.

    My mobility and range of motion was back to pre-surgery levels around 6-7 weeks. For about 6 months after surgery I had 'zingers' that felt like zaps of electricity in the area, which was just nerves reconnecting. Those stopped after about the 6 month mark.

    I didn't have any lymph node removal, save for the lymph nodes that are in breast tissue, and haven't had any issues with lymphedema.

    I didn't really have much pain unless I accidentally tugged the drain tubes or tried to reach too far above my head before my body was ready. After leaving the outpatient recovery room (they had me stay overnight), I didn't need painkillers beyond regular Tyelnol. Even then, the pain was more itchiness on the incision line (from the dang stitches mostly!) and a general 'ache' where my breasts used to be. Wearing a compression vest (I got a gynecomastia post op vest from Underworks) helped a lot.

    In all honesty, for me, recovering from a BMX was WORLDS easier than recovering from an ovarian cyst removal that I had done in 2015; that one was brutal for me and everything hurt for a good 5 months. I couldn't even stand up straight for almost 4 weeks after that cyst removal and with the BMX I was out taking walks the day after I got home--even if they were in a bulky shirt to hold the drains.

    Comparably the incisions were smaller (3" on my left lower abdomen, 2" on my right), but they cut through muscle to get at the cysts and it was just an awful, awful recovery for me whereas the BMX recovery was super easy and pretty painless, likely because no muscles had to be cut away or through.

  • Momine
    Momine Member Posts: 7,859
    edited May 2017

    The tightness took a long time to subside for me. I had some mild lymphedema, but a good PT beat it back. I did wear a sleeve for about a year, and for a few more years when lifting weights. At first I was completely numb, including in the armpit where they took nodes. But feeling has returned, very slowly. I am almost 6 years out and have few lasting effects, other than having to be mindful of lymphedema flare- ups

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited May 2017

    My recovery was complicated. I developed a massive area of necrosis (tissue death) which looked like a wolf took a big gnashing bite out of my right chest. The left side developed a 6" seroma. I ended up having to pack the seroma with iodoform tape twice a day for 15 weeks. I also had a wound vac on the right side for about 7 weeks, followed by an additional 9 weeks of dressings. It took a total of 16 weeks to completely heal and my scars are impressive. I've been mutilated. I can hardly even look at myself in the mirror.

    The only other issue I've had is the skin adhering to the chest wall. I had cording from my right chest and ribcage to my right wrist--you could see it from across the room. Thankfully, I had a massage therapist who was trained in myofascial release. She was amazing. Once a week she gently stretched the muscles to release the tightness. It took about 8-10 weeks, but she got it taken care of.

    At this point, I wear prostheses. The are big and heavy, but they look totally natural with clothes on. I am happy with the prostheses for now, but I am not going to stay flat much longer. I'm very unhappy with the way I look (my doctor left a lot of lumpy, folded skin, along with all the scarring.) I'm hoping to start the recon process later this summer. But for the moment I will continue to wear my prostheses proudly.

  • GeorgiaRai
    GeorgiaRai Member Posts: 175
    edited May 2017

    I'm almost 5 years post-BMX, and my early days/weeks are much as ravzari described. I had arranged to take 4 to 6 weeks off work (paralegal) but went back after 3. I had internal stitches with surgical glue, and healed without any trouble; drains were both out within a week.

    The internal itching (best way I can think to describe it) was irritating - you feel it itching, but when you scratch or rub it, it's numb & you get no relief! I learned from others here to scratch my back instead, and that worked for me until the numbness faded.

    I still have occasional aches & stiffness on the side that had cancer, but nothing that causes me trouble. BS wanted to remove a suspicious lump on the non-cancer side, so I just went full BMX. The non-cancer side actually needed more surgery due to a silicone implant that burst during surgery, but I never had any zings, stiffness or pain on the non-cancer side.

    I wear silicon prosthetics every day, because I find them comfortable and they make me feel like myself again. Bras don't hurt me, but it did take me a few tries to figure out what worked best.

    Best of luck to you, EpicSquirrel!

  • Kiks1
    Kiks1 Member Posts: 254
    edited May 2017

    I was 49 as well when I had my bmx. It has been a year and a half since the surgery. Drains were taken out 10 days after surgery but I did not take painkillers once I got home. I was hospitalized for a day and really cannot remember any pain whatsoever. The drains were annoying but doable. Out walking the next day but it was winter and I was able to put on a big coat. I had some tightness that lasted a few months but I don't even remember when it faded. I did develop cording on my arm but PT took care of that in 3 sessions. I had full range of motion within 2 months. More numbness at the beginning, like everyone else but nothing significant or worrisome. I still have some spots with numbness but does not bother me at all. Like Georgia, I had that phantom itching and scratching my back gave me relief. That, also, dissipated. I am, however. still learning how to fit in clothes better as I realized that even though I was a small b cup before, it does make a difference. Seems like your ribs and stomach stick out more because of the flatness on top. Yes, I do look better with my breasts but not enough for me to consider reconstruction.

  • secondchancetoo
    secondchancetoo Member Posts: 50
    edited May 2017

    I have had two mastectomies approximately 4 and 1/2 years apart. The first one I had immediate reconstruction with a tissue expander. That one was not really uncomfortable.....except the tissue expander with Alloderm turned out to be a nightmare! Necrosis, swelling, infection etc. plus, an iron band feel that felt like I had a toolbox implanted in my chest. I had that removed, abandoned the idea of recon entirely and healed up within days. No issues with lymphadema or anything else.

    My second mastectomy was after I developed a new cancer in my remaining breast and I knew that I wanted a mastectomy with no recon from the get go. No problems at all with surgery and recovery except a small stubborn Seroma that took about eight months to resolve. Overall, numbness was the thing that bothered me the most but that is very common and now most all of the residual numbness has passed. I never took any pain medications for either of my post op courses as I don't react well to them, but I found the pain levels to be minimal for maybe a week or two.

    I go flat sometimes and at other times I use a lightweight prosthesis in regular bras that I sew pockets into. I don't care for the overly constructed mastectomy bras and heavy prosthetics that are currently available although they do look very good once you are all dressed.

    Good luck with any choice that you make, it's good to go with your gut feeling....it won't let you down!

  • Momine
    Momine Member Posts: 7,859
    edited May 2017

    I should add that one significant after effect of a BMX, with or without recon, is the loss of an erogenous zone. It may not seem so important when you are facing a cancer DX, but do keep it in mind. That said, with the return of the nerves in my chest, some of that has returned as well, but it is obviously not the same as it was.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2017

    Thank you all for sharing these experiences. I know I can read about potential long term complications and see number etc. But the examples are very helpful to make it real

  • wrenn
    wrenn Member Posts: 2,707
    edited May 2017

    I was shocked at how little pain there was. I had plain tylenol the first day only. Most are in and out the same day but I had to stay in hospital overnight because I have sleep apnea.

    My complication was a surgeon who didn't attend to a large hematoma which affected one drain and became infected. I felt tight for months but now almost 4 years out there is no tightness.

    I was not pleased to find out how big my stomach was. It was hidden under huge breasts. I don't miss them at all but am always aware of my protruding gut.

    Drains are a nuisance but otherwise it is a fairly easy event for most I think. I was able to take care of things myself including bending to change cat litter box.

    Best of luck to you.

  • Mimi2kleh
    Mimi2kleh Member Posts: 84
    edited June 2017

    I'm must admit, I am jealous of all you women who had it pretty easy with not much pain. Mine is quite a different story. You can read it here: https://community.breastcancer.org/forum/8/topics/...

    I think Epicsquirrel should know there are also a huge number of women who have a hard time, and also end up like me, with PMPS (Post Masctecomy Pain Syndrome). There are some threads on this site about this issue. I belong to a support group for this, with hundreds of women from all over the world, and none of us were told about this issue. No doctors, surgeons, nurses, medical staff, ever mentioned anything about it. And many have had a horrendous time afterwards, with doctors who don't believe them, and some don't know anything about it either. We live in daily pain, and are on daily pain meds, and have tried every type treatment possible, and there is no cure. The medical community is just getting around to acknowledging it, and realizing some of the things that cause it. But it should be something you should check into and learn about, if deciding on a MX. Some of us had no choice, but some wouldn't have had it if they had known. And, it can also happen with just a lumpectomy.

    As far as living flat (you can read what surgeries I had done at the link I posted above), I am SO happy I didn't have reconstruction. It's easy not having "them" to deal with anymore. As others have said, I feel like I am all Stomach now, but I'm a fat! I threw out all tops and dresses that were built for boobs with darts. I wear mostly t-shirts, and peasant style tops, and they are fine.

    Good luck to you, let us know your outcome. 🙏

  • wrenn
    wrenn Member Posts: 2,707
    edited June 2017

    I forgot to add that I had axillary node disection (6 nodes) and I have not developed lymphedema (almost 4 years).

    Also for a while when I would get in the shower I would stop thinking I hadn't removed my bra when I didn't have one on. There was discomfort or obvious sensation of very large breasts being gone but not pain.

    Hope all goes well. I don't know of anyone in my groups who have had problems but things would vary depending on surgeon, after care, general health etc.

  • Bearhitch
    Bearhitch Member Posts: 40
    edited June 2017

    So for me - over 3 years ago... really no physical complications at all. I do have a dog ear that I would like revised someday, but other than that - nothing. No lymph node removal and a heck of a lot less problems than what I have heard others mention with implants. They were never an option for me.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2017

    My BMX surgery last 2 hours. I feared pain but experienced very little. I overnighted in the hospital. I walked 4-5 miles each day until my drains came out at 1 week. I went on a 10 mile hike the day after that. I did feel discomfort but the pain meds didn't help & it was tolerable. I found walking & keeping busy was a great distraction. I don't remember exactly when I started running again. I purchased some loose fitting sports bras at Kmart because it was hard to get into one's my size. Two weeks out, I woke up with my right arm over my head. It took another 2-3 weeks to raise my left arm over my head. Even before I could raise my arms over my head, I found I could use dumbells(smaller than usual). I just had to keep my elbows close to my side.

    I had some truncal edema for about 3 years but that seems to have resolved. Unless I wear a super soft t-shirt, I still need to wear a sports bra. Shirts can be uncomfortable when they rub against my chest. I don't use prostheses, just go flat.

    I had some weird pains in my chest & arms for about 3 years. It is almost never a problem. My surgery was over 6 years ago.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2017

    Thank you all for this great information! And Mimi wow your story is such an important one to hear, thank you for sharing all of that. I hope you are having some good days. It sounds like you have a lot of love around you.

    I am STILL weighing this decision, whether to go back for bmx or go forward with only tamoxifen at this point. I had a very successful lumpectomy with no signs of spread, good 3mm+ margins, but radiation is still the recommended standard of care following even a successful lx and favorable prognosis like mine, mainly due to my age/premenopausal. I'm not comfortable with radiation, which is why I'm considering bmx.

    I still have time to decide. My lumpectomy was 2 weeks ago and I reconfirmed that I have up to the eight week mark to decide before any option even rads would be "late". Genetic testing and oncotypeDx will give me more info as well. And I'm now seeing a psychologist to try to help with how stuck and obsessed/anxious I feel about all of this. (She suggested that hearing from women about their experience may be helpful)

    Thank you again for the generosity of your experience and your wisdom, and best wishes to you all for as many happy days as can bepossible!

  • Momine
    Momine Member Posts: 7,859
    edited June 2017

    Epic, although I have not had a bad time from the BMX, in your shoes I would probably do the rads and move on. In most cases (with notable exceptions, per above), a BMX without recon is an 'easy' surgery. At the same time, it IS also major surgery. It is an amputation.

  • wrenn
    wrenn Member Posts: 2,707
    edited June 2017

    I chose BMX to avoid radiation. No regrets.

    I'm glad you are taking your time. Wish it wasn't a decision you were faced with. :

  • Momine
    Momine Member Posts: 7,859
    edited June 2017

    Wrenn, point taken, and I am glad you are happy with your decision.

  • MamaOz
    MamaOz Member Posts: 432
    edited June 2017

    so momine,

    how are you doing these days ? Did you do any PT /LT after surgery? I am so far 2 sessions my range of motion in right arm hard going some cords set in but dhes good at working them out I sm s bit concerned about possibility of lymphedema especially after radiation so I want to do all I can. I noticed you had had alot of nodes removed as well..

    Any tips?

    Mamaoz

  • Momine
    Momine Member Posts: 7,859
    edited June 2017

    Mama, I did have some swelling during treatment, got PT ASAP and continued regular PT for almost a year. I am left with only a minor "blob" of swelling up by the armpit. The main thing is to be pro-active, i.e. get PT before the swelling goes nuts. Early stage lymphedema can be reversed. I did also wear a sleeve and glove the first year, and then for a while after when doing exercise and the like.

    It is also important to do the exercises they give you. They seem a bit silly and like nothing exercises, but they do help.

    Lastly, be aware. You will learn how your body responds. For example, I can lift weights at the gym, without a problem (small weights), but even 5 minutes with a small bag of groceries dangling from my hand will give me problems. In general though, movement is good. Even going for a walk. Lymph only moves around with the contraction of the muscles, so keeping active can help. Besides, being heavy raises your lymphedema risk, so exercise is your new BFF.

  • MamaOz
    MamaOz Member Posts: 432
    edited June 2017

    thanks momine, that is helpful and hopeful!

    It sounds like your doing well ..did uou have side effects from Femera? Are you still taking it?


  • Momine
    Momine Member Posts: 7,859
    edited June 2017

    Mama, I had my ovaries out to put me in menopause, then went on femara. It means I was plunged into menopause+ sort of overnight. It was rough the first months, but it is hard to say what was caused by the ooph, what was femara and what was after-effects of chemo etc. Eventually it settled down. My main SEs at this point are pain in the joints of my feet and occasional sleep troubles. The joint pain fades with movement and exercise also helps with the sleep problems. It can be annoying, but it is not anything too dreadful.

  • MamaOz
    MamaOz Member Posts: 432
    edited June 2017

    thanks Momine, always inspirational

    🌺😊

  • Maomaonie
    Maomaonie Member Posts: 11
    edited August 2017

    Hi EpicSquirrel,

    what have you chosen, bmx or lumpectomy ? Are you going to have radiation therapy?

    I have just diagnosed. IDC, stage I, minimum 2.5 mm. DCIS. And ADH lesion span of 3.7 cm. ER+/PR+/HER-. I am evaluating lumpectomy + radiation verses mastectomy.


  • MamaOz
    MamaOz Member Posts: 432
    edited August 2017

    well girls I am going for my radiation test run today and start rads tomorrow..did any of you have a plastic thing placed on your chest during rads? I cant remember what its called beloise or something apparently when you have no breasts or recon its needed to help spread radiation over skin

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2017

    Bolus. Yes, at times.

  • MamaOz
    MamaOz Member Posts: 432
    edited August 2017

    ksusan, you said at times? Please explain?

    they plan to use on me every time.. i am very small 5' and 98 lbs and the bolus comes down to my navel and across my whole chest( i had no recon)

    I have read that when used alternate days women fared better. The ones who had it on every time burned badly and had to delay treatment to heal ....so far today will be my 4th treatment and I see dr. Today I want to insist they alternate days


  • wallycat
    wallycat Member Posts: 3,227
    edited August 2017

    I was dx a month before turning 50 (as my tag line shows). I had the lumpectomy first (doc insisted) and a month or two later, went for the BMX. It is 10-1/2 years and the only thing I miss is the sensation/sexual gifts my breasts offered me. As others have posted, when facing cancer vs. sex, the concern becomes living---seeing past that at the time is difficult. I was a D cup. I thought I would be demoralized by losing my breasts (and I'm not saying there aren't days I have a mental pity-party) but not getting stared at walking down the hall anymore---priceless!

    My breast surgeon had a minor melt down when he came to see me the following day (required overnight hospital stay) because the pain cart was in the hallway. Totally freaked, he ranted at a nurse and was about to have it wheeled in when I told him.."do I HAVE to use that if there's no pain?" He was quite perplexed. I think 8 months into the journey, I recall taking 1 tylenol at work because everyone harped on me to "get ahead of the pain"....pain I never had so when I felt a slight "tight" feeling, I thought this was it. Nope. 10-1/2 years later and still no pain. My range of motion was affected with the SNB after the lumpectomy, which returned. The BMX was nothing. I was back to doing yoga backbends fairly quickly. I'm grateful that I still have not had any lymphedema. I understand that can occur anywhere from right away to decades down the road. I think cording is normal and I also had a great PT, though she said the cords would work out on their own. Not painful, just weird looking/feeling.

    Best to you on your journey and decision.

  • Momine
    Momine Member Posts: 7,859
    edited August 2017

    Mamaoz, I had a bolus every time, but not for the entire treatment. I had one small spot of burning that was painful the last week or so. I also developed large blisters at the end, which was quite nasty. I sprung for those expensive gel plasters and that cleared it up in a few days. All in all not fun, but the recovery was faster than I had expected. The lingering tiredness was worse than the burns.

  • MamaOz
    MamaOz Member Posts: 432
    edited August 2017

    Thanks momine, i was told my bolus is neccesary and if i start to get badly burned they will not use. My actual treatment is 7 min. Oh well I'm hoping they know best..

    And wallycat its always a joy to hear from women who are doing well many years out , I see you took arimdix how was that

    I was a nice B cup but now just use a little fluff in a soft packet #2 I pulled most of the stuffing out! And insert in my coobie bras it gives just enough shape like maybe A and its quite comfy



  • Lisey
    Lisey Member Posts: 1,053
    edited August 2017

    The issues I had after surgery were more related to the TEs I had put in, Once those were removed weeks after, I felt so much better.. I did have 'iron bra' for about 6 weeks until I had specialty PT that worked on adhesions and tight muscles. She did some incredible work on me and after about 6 sessions with her I had full range of motion and felt wonderful. My nerves took about 10 weeks to heal - It felt like a nasty sunburn, especially with the seat belt. The nerves and my sternum feel normal again now. Honestly, I'm 1 year out - flat and fabulous and I have absolutely NO side effects or issues with my flat chest and BMX. The only issue (other than healing initially) was the first surgeon left skin in case I changed my mind. I would highly suggest you reinforce you want to be boy flat and find photos to show them what you want. I had to have an additional surgery this spring to get rid of the extra skin he left. I am now perfectly flat with nice flat scars so I'm very happy.

    My list of positives is huge - even compared with when I had huge natural boobs. I love the clothing choices, the freedom to just put on a light airy top and go, the lack of boob sweat, I feel thinner and more like I have a dancers body now. I think I look better in dresses too without the huge boobs - which aged me. And finally, I won't have anything hiding under implants or tissue if I get a recurrence I'll notice it quickly and be able to jump. So many reasons I love being flat. Best of luck in your research and decision!

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