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Julez1958's avatar
Julez1958
Member
5 years ago

Double or single mastectomy and DIEP reconstruction?

Hi there,
I wonder if anyone has any guidance for a decision that I realize is mine alone but is nevertheless a difficult one.
I was diagnosed with invasive lobular carcinoma in August last year after discovering a lump in my left breast.
I had a clear mammogram less than 12 months prior. Ultrasound showed it 4.5cm but subsequent MRI showed it 6 cm.I had very large breasts .At the first meeting with the surgeon (when we thought it was 4.5 cm) he discussed options of either breast conserving surgery or mastectomy on the affected breast.I was leaning toward BCS until we found it was 6 cm and he explained that there was a greater likelihood of not getting clear margins where it was lobular and given the size of the tumour I might need a mastectomy in the end anyway.I opted for a mastectomy and it turned out it was 5.5 cm .Also it extended right up the top of the breast so mastectomy was the right choice.I was lucky there was nothing in the lymph nodes.I opted to go DIEP flap surgery with the plastic surgeon inserting a tissue expander at the same time as the mastectomy and also doing a reduction on the right breast.
I have since had radiotherapy and started on letrazole as the cancer is ER positive.
It all happened so quickly and I had no one else in my family or even a friend who had ever had breast cancer so I was not that well educated at that time.
I have since realized how many women have a double mastectomy,/reconstruction  even where they don't have any family history of breast cancer or other high risk factors.
I am planning to have the second stage of the reconstruction in June where the tissue expander is removed and replaced with my tummy fat .I didn't want to get an implant as I hate the idea of something foreign in my body and also the potential to have further surgery down the track to replace the implant.I realize that decision is very personal for every woman and also understand the DIEP surgery is much bigger surgery .
When I saw my breast cancer surgeon last week he asked had I considered having the other breast removed and reconstruction in the same operation as the DIEP could only be done once and many of his patients opted for a double for that reason and also the peace of mind of not worrying about having cancer treatment again if it came back in the other breast.
He wasn't necessarily recommending it but said it was something I needed to decide as it would be too late after the operation in June.
I have got over the fact that it would have been nice to have this conversation before the first operation, and just want to make the right decision.
I do have quite a bit of anxiety which has been heightened by all of this, and am leaning towards the double (I am 62, never considered myself as defined by my breasts, have an amazingly supportive husband who says "I just want you alive and will support whatever decision you make "  and already will have one "foob" so why not two).On the other hand, it will add to the length of the surgery, have extra potential complications and recovery time and may not be necessary.
Does anyone have any advice?
  • Hi @Julez1958
    It is a tough decision. A flap is a long surgery, as you mentioned. Having two instead of one done will extend it by a couple hours, but you will already be in surgery, and the recovery will be simultaneous for the two. I had a double mastectomy with immediate insertion of expanders, and they both just healed at the same time. I was already uncomfortable so didn’t make much difference. I healed within the recommended time and now feel great. It was good advice to join the recon group as there are ladies there who’ve had the double DIEP done, and so you can ready about their experience with it. Just think about what would cause you the least anxiety long term. 
    Good luck with your decision 🍀♥️
  • Hi @Julez1958,

    Sorry you are here too. I had ILC and my main tumour was 5.5cm too. Did you have chemo?

    I had a single skin saving mastectomy as i wasnt sure about reconstruction.  My surgeon didnt do reconstructions and would refer me later. Ive had chemo (5 months!) and about to start radiotherapy. Chemo was recommended for me due to my age even though no lymph node involvement. Its been explained to me that chemo is to reduce risk of any stray cancer cells getting around the body. Radiotherapy reduces risk of local recurrence where you had cancer. 

    Personally im not keen on surgery and im not unless advised going to take off my second breast (nor am i going to have reconstruction). I think its up to you how you view the risk to yourself, if your reconstruction needs to alter your good breast for cosmetic reasons to even them up anyway , and how likely you are to worry about a recurrence. 

    There is not as much research into ILC and i know others may view it as a slightly more unpredictable cancer. I have no cancer at all in my family and ive been told by my surgeon that the braca gene is not applicable to my cancer.  I am following best advice available to me and i refuse to live in fear of what might be. I look upon my body with kindness for the trials it has been through. Im working on lifestyle changes.

    Not sure that this really helps you but it is your body and you get to choose what is best for you. 

    Best of luck. 

    M


  • Dear Julez1958,
    We sound very similar.  Not the same type of cancer, mine was ductal.
    Mine started Feb 2020 Mastectomy, Chemo, Radiotherapy and Letrazole now.
    I'm also 62. I'm not able to help, because I too are just starting to think what to do next.
    I hate being lop sided, but I believe that I am healthy.
    Part of me thinks no surgery. But mostly I favour reconstruction. DIEP sounds good.
    I've yet to speak to a surgeon and find out all I need to know.
    I have a booklet, and have googled.
    What state are you in? If it is SA, I'd love to hear from you re any advice or Surgeons that you have seen.
    You could give a private message, if you want.



  • It's probably not much help but my surgeon has said something similar - he's happy to remove the other breast if I want to have the DIEP as it can only be done once.  I don't know if I will ever have the recon done - surgery was 3 years ago - but I know that I can change my mind anytime.  I think if it was me, if I was going to have the DIEP done, I would have the other breast removed but it's huge surgery and regardless of how well it is done, it's not going to feel like it used to.  
  • Hi girls, I chose to remove both so that I could do the Diep once.  I only wanted one surgery, knowing it would be longer but it also meant one recovery.  It seemed a waste to cut out that belly fat and throw half away.  Now I have symmetry and a tummy tuck.  Yes, the recovery is longer and it has it's challenges but I'm so glad it's what I decided  My doctor didn't discuss both with me.  A lovely lady on here told me they can only do the diep once, and I don't know why I hadn't thought about that.  So 2 days before my operation I opted for the double.  Now 7 weeks post op I'm back at work and feeling generally pretty good!  I have natural looking breasts (that need nipples in the future) but for me it was the best option over implants.  The choice has to be right for you.  I'm very glad I went down this route.
  • Dear Sooziq,
    im starting to think of doing the same. I need to have a good talk to the surgeon. How long did your surgery take?  And you are good enough for work at 7 weeks, that sounds good. Was your  second Mastectomy done prior to the DIEP? Or at the same time?
     I’m happy it went well for you. 
  • Both at the same time. I have an admin job so it was easy to go back to work. I did 4 he's in week 4 and 3 x 4hr days in week 5 and 6. I have a great boss who said do whatever you are comfortable with. But I felt I could've done full days albeit reduced hours from week 4. 
  • Abbydog said:
    Dear Sooziq,
    im starting to think of doing the same. I need to have a good talk to the surgeon. How long did your surgery take?  And you are good enough for work at 7 weeks, that sounds good. Was your  second Mastectomy done prior to the DIEP? Or at the same time?
     I’m happy it went well for you. 
    Hi Abbydog,

    My surgery was a DMX with diep reconstruction and took about 9 hrs.  I had a complication that sent me back to surgery 6 hrs later for another 3 hrs.  I don't think that delayed any recovery though and they still sent me home on Day 3.  I honestly could have been back to work for about 15 hrs a week in week 4.  I was bored at home, moving around was ok, still wearing the belly belt which couldnt be seen under my clothes, and didn't bother me sitting at my desk.  In fact, I enjoyed the distraction of work rather than thinking about myself all the time.  It made me feel kinda normal again.  The BC train is a rough ride with lots of peaks and troughs and lots of reading and talking.  Work distracted me from all that and I was grateful for that.  

    Hope everything works out for you!