Cant decide between single or double mx

allisontom911
allisontom911 Member Posts: 425
edited June 2014 in Stage III Breast Cancer
Cant decide between single or double mx
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  • allisontom911
    allisontom911 Member Posts: 425
    edited February 2010

    Hi Ladies,

    I am looking to see what some of you have done about doing a mx. I wont be having surgery until May once I am done with chemo. I do know from my MRI and PET that the tumor in my breast is 4.8cm and the tumor in my axillary node is 6cm, biopsy said both the same cancer.  I also had a lymph node up by my collar bone positive too from the PET scan.

    I will have radiation after surgery. I know I can not do implants due to the radiation says the PS.

    Just looking for comments from others that are Stage 3.

    Thanks everyone.

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited February 2010

    Wow, Allison, what a beautiful baby! 

    I am so sorry for what you are going through, and for having to make these decisions.  It's so tough to know the right thing to do.  I'll tell you my story, if it helps.  We initially thought I had multifocal DCIS, and I was hoping to do breast conserving therapy.  However, there was a pea sized lump under my arm, and I knew that there would be lymph nodes involved.  I talked to the PS and surgeon, and both agreed that if radiation was required, they could radiate the expander, and that's what we did.  So I had immediate reconstruction, had an expander put in, went through chemo and radiation,and then did the exchange surgery almost a year after the initial surgery.  By then, I was ready to say goodbye to the other one too.  Honestly, I did it purely for cosmetic purposes at the time.  I figured it would be easier to achieve symmetry if both boobs were fake.  Now, I'm glad I did it and I feel like I'd always be looking at the other one and fearing a recurrence.

    I'm always surprised at how often I hear people tell me that they couldn't get reconstruction because of radiation.  I did it and never had any problems.  I hope I never do.  Ask me any questions.  I hope I've been helpful to you.  Good luck with your treatments and surgery.  You can do it!

    Hugs

    Bobbie

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  • allisontom911
    allisontom911 Member Posts: 425
    edited February 2010

    Thanks Bobbie,

    Thanks for the compliment on the baby. He is my miracle and also "found" my lump in my breast. God had reason's for him. He is 4 months old today!!

    I have 2 consultations with PS in March. I am interested to see what they say. However, I see alot of gals have surgery before chemo and I am doing chemo first. I have my 4th of 6 treatments this week. The surgeon and oncologist wanted to see how I responded to treatment so they didnt want surgery first.

    The reason you stated about doing both for cosmetic reasons is why I want a double mx.....I have an odd question thou....you have no feeling in your breast/chest area correct? Is that strange??

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  • CharlestonGirl
    CharlestonGirl Member Posts: 161
    edited February 2010

    I am not stage III, but I did have a double mx last March 31st followed by SGAP reconstruction. I do have some feeling in the breast and chest area, although not in the reconstructed nipples. Not sure what happens if implants are in the mix. My understanding is that the transplanted fat from SGAP had nerves in it and nerve connections occur for about 50% of patients. Feeling comes back slowly if it does come back. Unless I touch the breasts they feel completely natural. When I touch skin that is numb, though, that feels a bit strange, like touching your face after a filling has been done. Most of my skin that has feeling is on the outside area of the breasts.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited February 2010

    Allison - Hi there. Your baby is so adorable! Wow. Hope Chemo is going Ok for you, you're in the home stretch now!

    I had a single Mx and have not had any reconstruction. If that is the route you want to go, it is not so bad. You do get used to being flat pretty soon, and with clothes on, nobody can tell. It truly doesn't bother me as much as I had thought it might.

    I am still undecided about recon - mostly I don't want any more surgery at the moment. But my BS thinks my skin would hold up OK if I choose to, even after radiation. So I do still have that option. If I did, I think I would remove the other breast at the same time.

    All the best to you.

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  • Texas357
    Texas357 Member Posts: 1,552
    edited February 2010

    Allison, I had a prophylactic mastectomy on my non-cancer side because I didn't want the emotional turmoil of always waiting for the other shoe to drop and wondering if the scans missed anything. As it turns out, I'm glad I did because the pathologist discovered I had atypical lobular hyperplasia which had not shown up on an MRI a few months earlier.

    As for reconstruction, I know of several women who have had radiation on one side and gone on to have implant-only reconstruction. I have and although I'm having a few issues with symmetry I'm very happy to have gone with this option.

    I do have some feeling in my new 'breasts' -- even some sensation where the nipple should have been. I don't know if it will survive the nipple surgery but we'll see!

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  • NancyD
    NancyD Member Posts: 3,562
    edited February 2010

    Allison, I had neoadjuvant chemo and knew I would be having radiation, too, so I put recon on hold and didn't try to deal with it on top of my treatment/surgery. That pretty much put expanders/implants out of the question, but I was leaning towards an autologous solution, specifically a DIEP flap. But because there weren't any PS's experienced in that technique that worked with my BS, I chose to put recon off for a bit.

    I had a bilat mx in July 2008. I chose to have my good breast removed because I told myself that I wanted to do everything I could to reduce my ever having to go through this again. My BS did a skin sparing mx, but in the end, I had such a wide field of radiation on the cancer side that most of that skin was not usable when the recon was done. I also had a large section of hard scar tissue that had formed.

    Eighteen months after my bilat mx, I had DIEP flap recon. I'm almost four weeks out from it and will tell you it was not an easy recovery early on. At least, it was much harder than my recovery from the original mxs. Both breasts are complete grafts from my belly. I have no feeling at all within the graft area and for about and inch on either side of the abdominal scar. From past experience when I had an ovary removed, I know some of the nerves in my abdomen may regenerate. I'm pretty sure, though, that the breasts will never have feeling.

    My new breasts are different from my old breasts both in shape and placement...not bad, just different as the PS placed them where he felt they should be, aesthetically (a little lower on my chest). I'm still getting used to them, but in many ways they are nicer than my original ones.

    I'm still wondering how I will deal with the scars which completely encircle each breast. I'm looking into some scar management patches that may help minimize them more quickly. In the past, my surgical scars have faded to almost invisible, but I suspect these, which are dealing with tissue moved from a different part of my body, and some radiated skin, may not react the same. But I'm not at an age where I'm going to be putting my body on display (I'm 58), so it's just a private issue. If you still like to wear bikinis or show cleavage, be sure to ask your PS about how much scarring his technique will leave and where they will be.

    I still have a few weeks to go before they will say my grafts are "safe", but so far, I've not had any trouble and really like having the new "girls." Deciding to have a bilat was not too much of an issue for me, and having delayed recon worked for me, too. I got to have the procedure I wanted and the results are very symmetrical.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited February 2010

    I'm also going through neoadjuvant chemo.  For the first 3 months I was trying to make this same decision but once my gene testing came back positive then I knew it was a double mast.  I'm assuming your BRCA results are neg.  I'm also 51 so keeping the girls wasn't as important if I were making the decision earlier in my life.

    Before the gene results I was leaning toward a BMX.  The MRI on the right says it clear but after having ILC in the left, not detected by mammo, I am leary of another cancer in the right and not being able to detect it soon enough.  I think that would have been my final reasoning for a BMX -- I just didn't feel confident that I would catch something in the right and there was no way I wanted to go through chemo again.

    Personally I'm putting of reconstruction just because I don't want to deal with it now.  I'll try the boob-free life for a while and see how it works.

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  • Jane_M
    Jane_M Member Posts: 1,549
    edited February 2010

    I had a mast on the left in 9/08, followed by chemo, followed by radiation.  I opted not to do recon.  In 11/09, I had a "proph" mast on the right which showed a very small spot of DCIS.  I am very glad now to have both gone and I don't regret not having done recon, but that's just for me. 

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  • thriceblessed
    thriceblessed Member Posts: 39
    edited February 2010

    Allison,

    I too had neoadjuvant chemo - and chose a mastectomy on my left breast only.  I very much wish now I had chosen a bilateral, which is what my heart told me at the time even though my head was telling me go single.  I made the decision based on:  BRAC results negative, ability to have immediate recon anyway even with rads (I have a tissue expander in and am doing rads now), and my onc saying they were much more worried about distant recurrence than recurrence in my 'good' breast.   At 51 yrs, I have one very droopy breast now...and this very high, perky 'new' one...and am sad with the unbalanced look.  It'll stay that way until at least 6 months post-rads when I can have an exchange or TRAM or DIEP - a total of 11 months.  I'm no longer depressed over my looks now though (still wish I had made a different choice, but I made the best choice I could at the time).  I went to Nordstroms and got a mastectomy bra and prosthesis (for my 'good' side..to even things up)...so in clothes I look balanced...and that made me feel able to cope.  My Reco - gather all the facts...then listen to both your Dr and your gut.

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  • thriceblessed
    thriceblessed Member Posts: 39
    edited February 2010

    Anyone know how I stop my posts from adding  '[Edit][Delete]' at the bottom?

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  • EGAL
    EGAL Member Posts: 539
    edited February 2010

    Allison,

       I had mx on the cancer side with immediate expander.  I had 8 rounds of chemo, then 30 rads with the expander in.  After that was finished, I had prophylactic mx on "good side" with expander and permanent saline implant on cancer side.  After a few weeks, had saline implant on prophylactic side.  I was a DD cup prior and didn't want to have an implant that large, so I chose a "C" cup on both. 

    Doing okay, you will too~

    Ellen

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  • NancyD
    NancyD Member Posts: 3,562
    edited February 2010

    thrice...that only shows up on the posts you have made so you can make changes. No one else sees them (except on their own posts, of course).

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  • blondie45
    blondie45 Member Posts: 580
    edited February 2010

    Allison,

    I had a unilateral mastectomy back in April of 2009. I wanted a bilateral mastectomy, but my insurance company refused on the day before surgery because MRI said my other breast was completely okay. It still angers me to this day that I did not have the other breast off and wanted to because of an insurance company. Personally for me I think it would be easier dealing with the whole thing if I had 2 gone instead of 1 still there.

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  • clariceak
    clariceak Member Posts: 752
    edited February 2010

    I had bilat. My surgeon in Seattle told me if there was a second cancer they could catch it early.   Unfortunately she was talking about the technology available in a large hospital.  I live in a small town in Alaska and I didn't feel I could rely on  mammograms after it failed to detect my large tumor in my dense breasts.

    I probably won't do recon, although I wish I had made that decision prior to surgery.  I have the most awful dog ears and lingering seromas. 

    Your baby is beautiful! 

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  • melbox
    melbox Member Posts: 2
    edited February 2010

    I had a mx in Sept 09, completed chemo and am currently doing radiation.  My dilemma has been whether or not my other breast will grow additional cancer.  I do not want to ever do chemo again if at all possible.  I could not consider recon during my initial surgery while making tx decisions.  My oncologist says I am not likely to develop cancer in my remaining breast- I think anyone who has had breast cancer is more likely to get it again.  I'm torn about having a prophy mx on the other breast.  Has anyone out there decided later to remove the other breast?

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  • phoenixsmom
    phoenixsmom Member Posts: 58
    edited February 2010

     I was stage III and also am Her2+ and I have to tell you, there is greater peace of mind having both breasts removed.  I do miss my boobies, but at least I'm not as worried about cancer coming back there.  The last thing I want is to ever have to go through chemo again!  Also, I think its easier for them to give you a good cosmetic result if they reconstruct both breasts.

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  • allisontom911
    allisontom911 Member Posts: 425
    edited February 2010

    Hi everyone, thanks for all the comments. I really appreciate hearing everyone's choices.

    I am leaning towards a dmx, but delayed on my "good side". My surgeon said we can do a SMX on my cancer side and when the time comes for reconstruction do a mx on my good side and reconstruction at that time. I am looking at DIEP.

    I think I want a dmx to try and avoid doing this again. I have my little one to worry about. i asked my onc about it yesterday and he said the biggest bonus of doing a double is having boobs that match...lol

    I wont be doing surgery until May sometime.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2010

    Allison....bilat....modified radical mastectomy with axillary dissection on BC side and prophy on the other side....immediate recon with expanders....chemo and rads.....AI's and ooph....the baby is a cutie!!!! 

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited February 2010

    Hi Allison,

    I am sorry to hear about your dilema.  It certainly sucks being put in that position.  I ended up deciding on the double for the following reasons: a) I had always had "trouble" with my large dense DDD's---breast pain, fibrocystic breast changes, cysts, false scares with previous biopsies involved and probably my biggest concern was that b) when the cancer was found on the right side, they did a bilateral MRI which showed some unclear specks/spots that they weren't sure what they were.  During my waiting period for surgery my BCSurgeon's team was supposed to review them for a definitive answer.  His spin was to just take the one side and follow up w/the other later.  Well, there were so many mix ups with my records that I'm not sure if the team ever actually reviewed my MRI films at all and he still was saying "we could always go and do the other side later"---well sorry, but WTF???!!!!  You want me to possibly go through this TWICE?  Not to mention I would be in a contant state of worry wondering if I made the right decision.  I went for both being removed.  AND in the final pathology they found LCIS (not cancer YET, but a precursor to it) in the left side.  So for me it was DEFINITELY the right decision.  Had there had been absolutely NO concerns showing on the left side I might have made a different decision.  But for me once I made the choice I was at total peace with it.

    Good luck on whatever you do.  FOLLOW YOUR GUT!  DO NOT LET OTHERS SWAY YOUR DECISION!  It is YOUR body and you are the one that will be living with the decison, not them.

    Let us know how you are doing.  BTW, ADORABLE baby----how old????

    Sharon :)

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  • allisontom911
    allisontom911 Member Posts: 425
    edited February 2010

    Hi Sharon,

    I am leaning towards tie dmx, atleast that is what my gut says. But I am scared of the no feeling/sensation.

    Thanks for the compliment on my baby. He is just the joy of my life. He is 4 months old. He is the one who found the cancer ....his little head bumped my breast and I went to rub it because it hurt and there was the lump. He was almost 7 weeks old when I was diagnosed!

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  • 1marmalade1
    1marmalade1 Member Posts: 308
    edited February 2010

    Your baby is now your little hero!  Hurrah for him - and you!

    I am neo-adjuvant -   have to decide on surgery options soon.  I am really leaning towards bi-lat - I am 38C and saggy(!) - I don't want recon - I came into this world flat, and I guess I'm going out that way, too!  lol   Seriously, I don't want the added mental trauma of always thinking this could happen again.  I am also Her2+.  My tumour is 5cm+ (although shrinking now that I'm on Taxotere).  I will meet with BS in March, but will also get a 2nd opinion from another BS.  The decision is hard, but we have to do everything to knock down this evil beast.

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  • Bugs
    Bugs Member Posts: 1,719
    edited February 2010

    What a doll baby! 

    I had a bilateral mx.  I have never regretted making that decision.  I delayed reconstruction for 3.5 years and then had a muscle sparing TRAM flap procedure.  I agree with the comments "go with your gut".  Make your decision and don't look back. :)

    Hugs!

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited February 2010

    Allison,

    Your little guy is truly a miracle in so many ways!  And don't let the fear of the unknown sway your decision.  I think some loss of feeling might just be worth the peace of mind you would get since it sounds like you are leaning in that direction.

    Take care,

    Sharon :)

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