Having a prophylactic mastectomy and have some questions.

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Two years ago I was dx'd with BC and had to have a uni-mx with rads.  I opted to not have reconstruction.  For a number of reasons I have decided to have my other breast removed. My questions:

1) Did anyone have their breasts removed at different times?  Was your experience similar with both breast? I didn't find my first mx to be difficult (except the drain - that was awful!).  I healed well and I think most of my issues are due to rads not the mx.  I was reading posts about post mx pain and that made me nervous.  Since my first surgery was so "easy" I figured this one would be too.  Now I'm concerned.

2) When you get prosthesis for both breasts do you stay with the same size your real breast were?  How do you know what "shape" prosthesis to get?  Does it matter?  Is it harder to be fitted for bras when you don't have breasts?  Should I see a fitter before removing my breast?  My experience with fitters hasn't been good so far.  I will be going to someone outside of my area next time I go.  The local fitter sold me bras that were waaay to tight.  When I have no breasts will I need the bras to be tighter (for example, I was a 36B before my mx but the fitter sold me bras that were 34's - I couldn't wear them and now I have lymphedema in my back area so I can't tolerate anything too tight.)

3)I've had an MRI and mammo and nothing can be seen (but I have very dense breasts) so the assumption is that I don't have cancer in my breast.  What happens if they find it?  It will be too late to do an SNB so what do they do about lymph nodes then?  Has anyone had a SNB when they had a pro-mx?

Sorry for all of the questions.  Thanks for your help.

Kim 

Comments

  • Cydney
    Cydney Member Posts: 85
    edited July 2012

    Hi Kim, I'm a uni boob, but my best friend is just like you.  She started with a mastectomy on one side and about 4 years later decided that instead of reconstruction, she would have her remaining breast removed to even things out.  She said the second operation was different from the first, her scar from that was different, not as tight.  She wondered if it was due to being a bit older.  

    She goes flat without a bra.  It would be my guess that if you have no breasts, you could pick what ever cup size you want - your chest measurement is your chest measurement - that would be the only measurement needed.  

    All your questions about SNB should be asked of your surgeon.  If it's not needed, I would avoid it.  I had one with my mx and that is the most sore part on my body still.  My mx was in spring 2009. I had radiation in 2007.  IMHO, the rad/SNB combo caused my trunkal lymphodema. I never even knew lymph nodes were associated with breasts before all this.  

    I know what you mean about bad fitter experiences.  I avoid them too.  Now I wear my old bras and have a couple of breast forms that I rotate.  

    You are in my thoughts and  prayers are with you as your journey continues.  Wishing you speedy healing and great good health! - Cyd

  • Pessa
    Pessa Member Posts: 519
    edited July 2012

    I had a lumpectomy with poor margins.  Then had a MX, then a month later had chemo, then a couple of months after I completed the chemo I had a prophylactic MX.  No reconstruction.  The second surgery was very similar  except that the drain partially clogged up pretty soon after the surgery, so after it was pullled I had fluid build-up (called a seroma), which required draining a few times (he stuck a needle in and drew out the fluid).  The draining was painless.  The wound was slightly slower to heal but all is well (this was 2 years ago).  I did go to a fitter.  Initially I had one prosthesis which perfectly matched my remaining breast.  When the 2nd breast was removed I got a match.  I had an OK experience with the fitter but was also given a bra that was too tight.  I then went to Nordstrom's to get new bras.  They have mastectomy bras or will sew on a pocket onto any of their other bras that you want.  I need new forms so will go back to the fitter for that.

  • Momine
    Momine Member Posts: 7,859
    edited July 2012

    I had a BMX from the get-go, so some of the questions I can't answer for you. However, my left breast was removed prophylactically, or so we thought. All the same, they used the dye and took the sentinel node to be sure they did not leave any cancer in there. The node was clear, but the breast had stage 0 cancer (in situ).



    However, on the bras and their size: No reason to aim for your original size, unless you liked it. I go smaller, and I wasn't that big to begin with. The woman who sold me the fiber foobs to wear home from the hospital (still the foobs I use) tried to talk me into bigger. Her argument was that I was tall, so I could "carry" it (i.e. wouldn't look ridiculous). But if you always wished you were bigger, go for it. It really is all up to you (and your wardrobe).



    I too have some lymphedema crap going on in my armpit and back, making bras a really bad idea. I took the first batch of MX bras I had bought (cheaply at TLC online), cut the straps and backs off them and sewed the remaining part, the cups, into a fairly tight tank top. I stick the foobs in there and it is very comfortable and does not irritate the lymphedema. I have done the same with even cheaper genie bras, most recently sewing the front part of one into a fitted dress, for one-stop foob wearing. The only thing is that this get-up won't work with heavy foobs, so you would need something lightweight.



  • ohio4me
    ohio4me Member Posts: 491
    edited July 2012

    Houndmommy - you may want to check out a discussion called Breast Implant Sizing 101 for input. There is a gal there that is very helpful.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited July 2012

    I had my breasts removed at different times. The left one had cancer and was removed along with 7 lymph nodes.

    The second breast flagged on a MRI in 3 places. I completely freaked out and wanted it removed. The doctor said he could remove it and NOT touch any lymph nodes. However, if any cancer showed up in pathology, he would have to go in and take some lymph nodes.

    I was very firm about no lymph nodes, I needed one good working arm and I do know even 1 lymph node removed can lead to lymphedema.

    Fortunately I did not have cancer in the second breast, some precancerous conditions, and therefore no further treatment and no lymph nodes removed. I work with my hands so preserving myself from LE was critical.

     I am flat now, often choose to be flat, but wear any size i feel like, 3's to 5's. In a coobie type bra, you can wear any size, they all fit. Actually I wear a bra from bali, bare something or other, very flimsy, no cups, I just tuck the form in and head out. I do not want a tight bra due to the LE issues on the cancer side.

    Oh! I healed 10 times faster where there was no cancer involved. The drain was only in for days.....on the cancer side, weeks.

  • JAN69
    JAN69 Member Posts: 947
    edited August 2012

    I'm a regular on the triple negative board and am happy to have found this board.  I had a uni mx about 18 months ago and for the last year I've been kicking myself that I didn't get a bi mx.  I want to go "flat" because the dang form is so very uncomfortable.  I, too, need to keep things loose so that lymphedema doesn't get worse.  I wear bold printed T shirts mostly, so bras aren't so much an issue.  I seem to be of very much your thinking on this topic.  Calling surgeon soon.

  • Cats134
    Cats134 Member Posts: 131
    edited August 2012

    I had a PBM last December and went breastfree for 4 months.  I was lucky that the fitter I went to was very attentive and knowledgeable.  I tried on many different bras and different type/sized foobs until I found what I was comfortable with.  A good idea is to bring some favorite tops with you so you can see what the foobs look like in them.

    A word of caution on lymph node removal.  Because of a suspicious area in my right breast that couldn't be biopsied, I agreed to a SNB on that side only.  When I got my path report back after surgery, it said that 19 nodes (5 SN) were removed on my right side and 9 on my left.  The nodes were entwined with the breast tissue. Of course, this is from someone who's tonsils grew back too...I'm a mutant.  

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