Just diagnosed...again. Surgical decision - help please?

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hmmelissa
hmmelissa Member Posts: 25
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I have just been diagnosed with DCIS in my right breast.   This comes 6 months after completing treatment, and less than a year after my first diagnosis in February 2013 (IDC in left breast).

For my first diagnosis, I chose to have a lumpectomy (followed by a bi-lateral reduction and lift), radiation, and I am taking Fareston (instead of tamoxifen).   I am 39 years old, BRCA negative, and I can't believe that I am going through this again, so soon after completing treatment.   I was really happy with the results of the lumpectomy/lift/reduction.

I need to make the decision about lumpectomy versus mastectomy.  Initially I was sure I was going to do the lumpectomy,  and while the doctors are comfortable with either decision and are not pushing me towards mastectomy, my breast surgeon was clearly alarmed that a new cancer had popped up so quickly since all my screening around the first incident.

I understand the survival rate for each procedure is the same, but I don't have a handle on the reccurance rate.  My surgeon's nurse said 2% for mastectomy, 15% for lumpectomy, but that mine was probably significantly higher (20-25%) given my history.  I am scared about the mastecomy surgery and the physical results, but there is a good chance of some appearance issues with the lumpectomy as well, as the mass is in my upper left quadrant, so I'll probably be scarred and possibly dimpled.

I welcome any advice, experiences, or opinions.  I was initially confident and comfortable with my course (lumpectomy), but I am definitely having second thoughs.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2014

    I have not been in your situation and I am sorry you are having this experience.  So this is just an opinion... I think I would choose the lumpectomy.... dcis is not invasive-- and if your docs are not strongly suggesting mastectomy, then why not do the lumpectomy?  You are still recovering from your first experience, you need time to give this some thought.... 

    Again, just an opinion.... good luck

    C

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  • Solen
    Solen Member Posts: 146
    edited January 2014

    Did they test you for the BRCA genes?  That info would impact your decision as well.

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  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited January 2014

    Hi hmmelissa,

    I had a bilateral mastectomy, and the removal of one of the breasts was supposed to be prophylactic.  My right breast was a cancer soup, but my left breast had been declared clear after a mammogram, sonogram, MRI and PET prior to my surgery.  My surgeon was neutral on its removal (although she did not object when I said I wanted a bilateral mastectomy).  After the left breast was removed, they discovered (through final pathology) widespread DCIS in the left breast as well.  This is just to say that I would not overly rely on imaging techniques.  Sometimes they miss things.  They may even be missing other areas of DCIS in either one of your breasts.  I have to say that I did not have any issues with a bilateral mastectomy, healed fast and really well.  I know others' experiences are not the same, but I can only talk with respect to my own experience, and I can tell you that I have absolutely no regrets regarding my decision of bilateral mastectomy.

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  • hmmelissa
    hmmelissa Member Posts: 25
    edited January 2014

    oh- it looks like my last reply did not post :-/

    I am BRCA negative - the doctors don't really seem to have an opinion on which path I should take - but I am very concerned that DCIS has popped up in the very short time since I went through all the last scans before radiation.  I don't want a mastectomy (I know, who does!), but I'm afraid this may not be the last time I have to deal with this if I go the more conservative route, and then my options are more limited if something else pops up.   I am also worried about radical surgery on radiated tissue, though I already have that on the left.  

    Thank you so much for your responses - very much appreciate the support, opinions and help!

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  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited January 2014

    I would say try to pick the path which would give you the most peace.

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  • mema4
    mema4 Member Posts: 574
    edited January 2014

    It is so hard to make a decision here. I went with the lumpectomy since I had the choice, however, the MRI didn't pickup everything and after the path report came back I needed a mastectomy which I had been denying I should have. I regret that first decision as having two surgeries back to back has been a bit of a pain. I then understood that MRIs can't pick up everything. I am only one week out and still recovering. I'm doing the reconstruction at the same time. It's not pretty and my chest feels pretty tight but both surgeons reassure me it will look good and feel better as we finish. Take a route that keeps you from going through all this again. It will make it worth it and make you more comfortable.

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  • hmmelissa
    hmmelissa Member Posts: 25
    edited January 2014

    Thank you all,

    I am definitely leaning heavily towards the BMX, as sad as it makes me.   The frustrating part is my docs won't concur.   Radiologist and oncologist say re-occurrance/new cancer statistics are the same for either procedure, and both breast surgeon and PS have completely different opinions.   I kind of feel like a ticking time bomb, but if the BMX does not help my chances, should I put myself through it?

    Again, thank you - so appreciating the feedback here. 

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited January 2014

    Please take your time in making your decision, and if you choose the mastectomy it cannot be undone.  You will have to face the possibility of losing all sensation in the breast. 

    I don't regret my decision, I had cancer in both, I had a lumpectomy first. My tissue was dense and I thought this was the best choice for me. 

    There are a number of reconstruction options out there, explore all and ensure you talk with a very experienced PS (ask to talk to their patients directly who had similar surgeries). You don't want to go through extra surgeries...

    Take the path you can live with, but don't rush into anything, you have time to decide.

    Best wishes,

    Ali

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  • pajim
    pajim Member Posts: 2,785
    edited January 2014

    What Ali says x2.  This is not an emergency.  I can't help with your decision.  Sounds like you talked with all the members of your health care team, who are giving you different recurrence rates?  Could each of them provide you with the primary sources from which they are quoting those rates?

    If you could read the literature it might help.  Always check Table 1 to see if the women studied/followed are just like you.

    Pam

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited January 2014

    hmmelissa -  What Ali said times three...  I swear she could have been talking about me in her post.  This is a big decision but only you can make it.  Don't let anyone pressure or hurry you.  Take your time and figure out what will ultimately give you peace.  We've all weighed our options and chose what was best for each of us.  Sending you strength and light...

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  • hmmelissa
    hmmelissa Member Posts: 25
    edited January 2014

    Thank you all - I thought I had my decision made, felt a tiny bit of peace, and then met with another surgeon today, and am completely back up in the air again.  I guess I will just have to work through it.  Thank you all again for the support.

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