Surgery decisions

Carissa_BCNA Administrator, Staff, Member, Moderator Posts: 252
@Sheeba original post copied from the activity section.

I was diagnosed with stage 3 breast hormone positive breast cancer in august 2021. The surgeon said because of the size of my breasts in relation to the tumour, 4cm, I would need a mastectomy followed by chemotherapy and radiation or I could have chemotherapy first in the hopes of shrinking the tumor.

The tumour did shrink after chemotherapy and I had a lumpectomy 1st February. This plan seemed to be going so well with only 3 lymph nodes removed (one had a dead cancer cell in it, killed by chemo) and not a bad looking breast left afterwards...
until...due to only 0.5mm margins, my oncology team that I needed a 2nd reexcsion for clearance...but then the 2nd surgery had pathology results with further dcis!?

The surgeon offered me the choice to do a 3rd reexcision (but if she can't get clear margins I will need a mastectomy and radiation) or to go straight to mastectomy and radiation. I was shocked my treatment plan had begun to go wrong/ was so mind numbing I had to ask my husband to decide what answer to give at the appointment and I am booked in for a 3rd reexcision next week.

Since then I have been anxious I made the wrong decision and have spent hours researching and talking about how to make the right choice. I am confused because I was prepared to have a mastectomy at diagnosis because the certainty of getting all the cancer out this way, but I was advised to go the lumpectomy route. I hadn't thought I would need to revise the plan again. My breastcare nurse has been very supportive and positive this week, and confirmed that a lumpectomy with radiation has the same survival rate as a mastectomy, only a slightly higher chance of recurrence. My breast is already visibly smaller than the other one and the nipple is pointing downwards. I found my padded bras compensate for this but don't know what it will look like after a 3rd excision and radiation. 

Am I at the point now where the pros of a mastectomy with reconstruction will outweigh a lumpectomy?
Does reconstruction after the lumpectomy defeat the object of less invasive surgery?
I am feeling exhausted and the thought of more demanding surgery in a mastectomy terrifies me.
I am overwhelmed by the thought of plastic surgery afterwards. 
Do I need to push myself and choose mastectomy now, because my lumpectomy route is clouded with so much uncertainty and unsatisfactory cosmetic results now?
Will I be dissatisfied with a 3rd reexcision in the long-term?
I may need a mastectomy anyway. 
I want to get the cancer out and survive so I am loathe to cancel my reexcision next week. 
Nobody said this would be easy but I honestly didn't know it would be this hard.


  • Carissa_BCNA
    Carissa_BCNA Administrator, Staff, Member, Moderator Posts: 252
    @arpie reply also copied from the activity section

    So sorry to see you here, @sheeba, joining the club that no-one really wants to join.  

    Gosh - you're having a tougher time of it than most, with all the changes in treatment choices & outcomes. I don't envy you your ongoing meetings with surgeon/Oncs. However, decisions need to be made & hopefully you'll be given balanced information to assist you in your next choices. Maybe, Give the Helpline a bell in the morning & chat it out - looked at by 'new eyes' may help clear the air a bit (1800500258).

    You can join the Reconstruction Group, where you can discuss matters in total privacy - not everyone goes down the reconstruction path. 
    @Mez_BCNA - maybe you can arrange an invite to join for Sheeba. When you have a spare 5 mins, jump onto this thread & read up on some of the other bits on the blog that may help you further along the line - including a link to 'tick sheets' re questions to ask of your team (that may help you later this week.) 

    Take care & All the best with your appts this week xx. Let us know how you get on xx 

  • Afraser
    Afraser Member Posts: 4,390
    edited March 2022

    You’ve had very bad luck. The options your surgeon proposed at the outset seem completely reasonable, most people would choose a lumpectomy over a mastectomy all factors being equal. So it’s important you stop
    agonizing over a ‘wrong’ decision. You made a sensible decision with the information available. Now unfortunately you have more information.

    If a third excision is successful you may still want to consider some reconstruction. Is that an important step for you? As @Mez_BCNA has said, you may find the Reconstruction Group helpful, others may have had to make a similar decision. 

    While your wish to have the cancer out is normal and sensible, it’s also sensible to be confident in your decision, as much as possible. The ‘tick sheets’ are a good idea, to help you work out what you most need to know, and reduce your anxiety about your choices. Best wishes. 

  • Sheeba
    Sheeba Member Posts: 18
    edited March 2022
    Thank you @Afraser that is good advice and kind understanding of my reasons for anxiety. 

     I have calmed down since the weekend and I am focusing of trying to keep hopeful this reexcsion works tomorrow.   

    I do worry I will still have anxiety about recurrence if I stop at the lumpectomy.   

    If I am perfectly honest, I do find the idea of plastic surgery overwhelming.  I had not even considered it until I got my results.  I will look at that link thank you @Mez_BCNA
  • Afraser
    Afraser Member Posts: 4,390

    Have a chat with your surgeon about reconstruction options, not all need to
    be done immediately, you may want some time to think. As@Mez said, not all women choose the reconstruction path, for all sorts of reasons. I had no option but mastectomy, wasn’t at all sure about reconstruction and my surgeon preferred to wait anyway. I ultimately decided not to and have never regretted that decision but it’s a highly personal choice. For some, reconstruction is an important part of recovery. Best wishes for your surgery. 
  • Julez1958
    Julez1958 Member Posts: 1,157
    Hi there
    first up, it’s an extremely personal decision only you can make.
    my story is that I was diagnosed with lobular cancer in my left breast even though I had a clear mammogram 12 months prior.
    at my first consult  with the breast cancer surgeon he talked about a choice between a lumpectomy and mastectomy . He did say there was a chance he might not get clear margins in which case I would possibly need a mastectomy.
    I then had an MRI which showed the tumour was bigger than we first thought ( it was 5.5 cm) and the breast cancer surgeon recommended a mastectomy .
    I accepted that advice and in the end went with a double mastectomy and DIEP flap reconstruction after a lot of anxious consideration.

    my breast cancer surgeon said there was a 10% chance the cancer would come to the other breast .Some would take those odds , I decided not to and once I made the decision I felt an overwhelming sense of relief.
    but I also understand completely the other argument - why remove a perfectly healthy breast?

    so in the end it’s up to you.

    I wish you all the best with whatever decision you make.🌺
  • VSP
    VSP Member Posts: 10
    edited March 2022
    Hi @Sheeba.  I just wanted to reach out and wish you all the best for your surgery and recovery.

    A breast cancer diagnosis and making decisions about what to do about it can be so overwhelming.  I faced the decision re whether to have a lumpectomy and radiation following a recent diagnosis of a stage 1, node negative ductal carcinoma or to have a double mastectomy.  The issue for me was that it was my third diagnosis in 27 years, I had had a lumpectomy in the other breast with radiation 7 years prior.  

    I chose the double mastectomy, because I wasn’t convinced it wouldn’t happen again,  and I also chose to go with a DIEP flap reconstruction at the same time.  I was terrified at the thought of such a long and involved operation, and had second thoughts about it all the way up to the surgery, but at 5 weeks post op now, I am so glad I went through it.

    My pathology results following the mastectomy revealed a rather large area of DCIS with some LCIS in the same breast where the tumour was AND another stage 2 ductal carcinoma 11 mm in the other breast (the one that I had had radiation therapy on 7 years ago).  Neither had been picked up on the scans I had had in September.  The mastectomy was definitely the right call for me.

    I have to say I never imagined I would be seeing a Plastic Surgeon for anything, let alone talking about breast reconstruction, but reading more about it in the Choosing Breast Reconstruction group and also accessing some of the other BCNA resources helped so much.  It’s actually amazing what they can do and how normal they can make you look and feel with all the different methods they use.  

    I would suggest that if you are not happy with how things look after this surgery, go and see a good Plastic Surgeon (your Breast Surgeon will know of a few) and have a consultation just so you know what your options are.  And definitely reach out here if you have any questions.  There is so much collective experience and wisdom right here in this forum and many generous women at the ready to respond. 

    Best Wishes for the Operation and beyond.  🤗
  • Sheeba
    Sheeba Member Posts: 18
    Thank you for sharing your story VSP.

    It must have been so scary having a recurrence and you sound very brave.

    I feel reassured that you survived that daunting surgery. I feel less apprehensive of plastic surgery too reading your message. 

    I will also ask for a mamogram  as well in my other breast thanks to you.  I am so grateful for the treatment options available.
  • Brenda5
    Brenda5 Member Posts: 2,423
    The worry of breast cancer never stops even if you have had a whole single mastectomy like me. Six years no evidence of breast cancer returned so far.
    Hugz for your further treatment and fast recovery. <3
  • Sheeba
    Sheeba Member Posts: 18
    My 2nd reexcision went smoothly, although I feel more bruised and tired now- I suppose this is no surprise after a 3rd surgery in the space of 6 weeks. 

    I felt pleased with myself that I had given this final reexcision an opportunity to remove the dcis (and relieved more cancer has been removed!). I am however, having difficulty in coming to terms with how I will feel if I do actually have clear margins this time.  Can I allow myself to stop at this point? or do I need to ask for a mastectomy anyway now because I will blame myself if there is any residual disease?

    I have hormone positive cancer and apparently this is the most likely to recurr? Apparently I would have a mastectomy if cancer recurrs.  I feel sick at the thought of having chemotherapy again. 

    I am 42 years old with a 10 year old son and want to be around to see him grow up.

    I understand that death from breast cancer is when it spreads to other organs, and this has the same chance of happening whether you have a mastectomy or a lumpectomy with radiation.   I need radiation next anyway and to my lymph nodes.

    Tomorrow I get the pathology results and find out if I NEED a mastectomy anyway or not.

    Feeling anxious again. 
  • Fernweh
    Fernweh Member Posts: 65
    edited March 2022
    Hi @Sheeba

    So many difficult decisions to make!

    Take your time to think about what you need, but don’t over think it. Wait for the results tomorrow and then start to worry about the options/next steps. Today is only going to be a guessing game so you may as well enjoy it as it is without tomorrow’s worries 💫

    If you decide a mastectomy is the right next step or it is what needs to be done, take time to consider all your options and timing too! 

    I am 36 and had to have a mastectomy (right breast) as the cancer was too big/spread, no choice there. I have opted (convinced my surgeon) for a double mastectomy. I knew I didn’t want to be loopsided and  I know I can have the same reconstruction on both side in the future, but I am choosing to stay flat.

    I went over and over all the pros and cons (the big one like anxiety for and in the future and even the silliest one like being able to run without a bra - I don’t run, ever btw!) and despite some double guessing and comments from my family (unfortunately projecting their worries onto me, which were never mine!) I knew what I wanted and therefore was right for me. This forum was also incredibly supportive and helped me make the best decision!

    I guess what I am trying to say is.. do what feels right for you. Don’t focus too much on the statistics. Take a step back and think about what is important to you - be selfish!  🌸

    We are all different, but I hope my experience with the surgery helps you with your future choice. 
  • arpie
    arpie Member Posts: 7,736
    All the best with your results tomorrow, @Sheeba.  I hope you get clear margins & can move onto the radiation phase (which many of us actually found to be not to be as 'nasty' as our brains imagined!) 

    Try not to overthink things or get ahead of yourself - as your brain can play nasty tricks on you!   ...... Sadly, a percentage of us may go on to develop Mets/advanced cancer - but we also have plenty of members with Mets who are living full & happy lives, 10+ years past diagnosis .... as they are getting so much better at treating it now, looking at it more as a 'chronic disease', with advances in treatment being made every year  ... 

    Take plenty of Deep breaths .... Take one day at a time, one hour at a time, if needed  xx