Prophylactic bilateral mx after "successful" treatment?

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thegoodfight
thegoodfight Member Posts: 560
Prophylactic bilateral mx after "successful" treatment?

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  • thegoodfight
    thegoodfight Member Posts: 560
    edited August 2009

    I know some of you may have seen my posts the last few weeks.  To sum it up if you are not familiar, here is my story.

    I was dx a year ago July (see signature below) and had a lumpectomy, chemo and rads and I am now on Arimidex.  While doing more initial screenings, we did find a second small cancer in the same breast, different quadrant through an MRI.  Also showed atypical cells in other breast.  Both areas were removed with clean margins in excisional biopsies.  This was all found before I started my chemo and rads and docs felt this was still the course of treatment.

    Now my onc is asking me to seriously consider a bilateral mx to lower my risk of future cancers.  This has nothing to do with the cancer we have already treated.  I am in the process of second opinions, soul searching, etc.  I am overwhelmed by the surgery, which would include immediate reconstruction (probably diep ) and the fact that I would have to travel and be away from home for a few weeks.

    I am just curious if anyone else has a similar journey and what they decided.  Of course I can "wait" and be tested every six months and maybe there will never be another primary.  No one can answer that one.  I am 64, and otherwise quite strong and healthy.

    Thanks for any thoughts you may have...............................Caren

  • Gitane
    Gitane Member Posts: 1,885
    edited August 2009

    I chose a bilateral mastectomy with expanders/implants.  Only one side was prophy, the other was necessary because of the nature/position of the cancer.  I never regretted it.  I was otherwise healthy, too.  If your oncologist is recommending it, I would seriously consider it, as long as you agree with his reasoning.  Second opinions and soul searcing are in order, of course.  Good luck. G.  

  • Mamita49
    Mamita49 Member Posts: 538
    edited August 2009

    yeap, same here. I did A/C and Taxol. Did not have rads jet, (just finished Chemo last week...:)

    I went for second opinion, glad I did. ( That was while on Chemo back in April this year..)Had lumpectomy with clear margins, 2 nodes out, both + in January. 

    Depends how close your margins were. Mine were clear, But came close to chestwall. 

    I went to see another surgeon, he advised me for more nodes to take-out, and I will have a mastectomy in 10 days.

    Well, this is very personal, but I will go for the surgery, specially since my last Mammo last week, ( same week than my last Chemo) showed some microcalcifications that are at the same spot before I started Chemo.

    Guess what, no questions asked, I will go for mastectomy.

    I wish you good luck with your decision. 

  • thegoodfight
    thegoodfight Member Posts: 560
    edited August 2009

    Thanks Gitane.  The question is that this is AFTER completing the protocol of treatment.  It was mentioned last year, but then he backed off saying his reason was so I would not have the stress in all the future years of constantly being tested and waiting for results.  But, when all docs involved assured me that the course of treatment we had decided on was just as effective, I decided against mx.  That is why I am so surprised he is putting this on the table now to lower the risk of future cancers.  I thought I was post treatment and would have some time to smell the roses, but here we are again.

    BTW, I am a huge cat lover also (assuming you are from pic) and my baby's name is Austin

  • Mamita49
    Mamita49 Member Posts: 538
    edited August 2009

    Just wanted to ad, you had also a 3cm tumor like me. This is considered a large tumor as I have learned. Maybe he wants you to have a mast. due to size .

     just a thought. 

  • lisa-e
    lisa-e Member Posts: 819
    edited August 2009

    Caren, I understand that you are post treatment. If I were in your situation, I would get a second and third opinion. Mastecotmy and reconsruction are major surgeries and I would want to make sure it is necessary.



    I had a mastectomy, without reconstruction, after being diagnosed with multi centric cancer. I had the surgery because it was necessary to treat my cancers. But I miss my breasts, I miss their sensation and I hate the fact that my scars are uncomfortable and serve as a constant reminder. I think close monitoring and even possible biopsy's would be better than loosing your breasts without a good reason.

  • LISAMG
    LISAMG Member Posts: 639
    edited August 2009

    Having a 3 cm tumor with HIGH grade can be worrisome for recurrence and the first 2 yrs give you highest risk then 5 yrs., Plus, you have pre-malignant findings in opposite breast....gather all the facts, get opinions and you will find whats best for you!!

  • Jana123
    Jana123 Member Posts: 3
    edited August 2009

    Hello!  I myself chose to do a bilat masectomy, after being dx, due to being brca2 positive.  I don't regret it at all, but reconstruction is not a fun process, and I chose the simplest one, (immediate) with expanders and then silicone implants.  I was told that the lumpectomy and rads, treatment etc. has the same effective rate to treat cancer, but due to my age (41) and my brca status, the mx was my best choice.  Have you asked the onc to do the oncotype dx test? That might give you some idea of recurrence possibilities.  I was really struggling with the decision myself last july when I was dx, but the brca results made my decision really easy, and I don't think I could have convinced myself to do it otherwise. 

     I LOVE not sweating it out with mammograms and constant MRI's now, what a relief.   However,  why in the HECK is your doctor trying to talk you into it NOW, AFTER your surgeries and treatment? I could understand if you were 35 years old and pre-menopausal.    I understand his choice of prophylactic to avoid more recurrence, but geez louise...After all you've already been through, most people do NOT want to go back and do more surgery.  There are a lot of risks with DIEP procedures, and you need a VERY good surgeon to do it, as the more complex the procedure, the more complications or risks there are.    I agree with the idea of getting a second and third opinion before considering it, and getting an oncotype dx test if you haven't already had it done!    This journey is really a strange one, isn't it???.  I can't believe it's already been a year since I was diagnosed.  The things I've learned in a year.  Amazing.  Good luck with your decision!!!.  Jana    

  • Mamita49
    Mamita49 Member Posts: 538
    edited August 2009

    Like I said, I went through Chemo. I was suppose to start next week rads, but when my new surgeon presented my case to the McGill boarsd, they agreed it would be better to have mastect.

     This was not planned, but still, I am glad that there are docs out there who take action.

    So glad. 

  • hrf
    hrf Member Posts: 3,225
    edited August 2009

    Does the doc think you are at a high risk for new cancers? Seems they can treat what you have now but it's the future that is of concern. When I was dx the first time, I had lumpectomy, chemo, rads .. but the docs were recommending bm because I am high risk for a new cancer. I decided against it but almost 4 years later got a new cancer in my other breast. This time I did the bm.

    A friend of mine who is the same age as you, was dx with 2 different tumors in one breast at the same time. Her docs felt it was not a matter of "if" but "when" she got a new cancer so she also did a bm. She is happy with her decision.

     Get a second opinion and then do what you feel is best for you.

  • thegoodfight
    thegoodfight Member Posts: 560
    edited August 2009

    Hello to all you wonderful supportive ladies.  I was out of town all day and now in checking in I feel the support and encouragement from all of you.  It's like one big hug, I love it.

    some of you asked about brca testing, oncotype, etc.  I have had it all.  My brcas were negative, and my oncotype was 17.  Infact, the chemo was a no go, just lumpectomy and rads based on my score.  But then with the second dx we went for the chemo.  Felt it was some insurance.

    As I said before the decision about a bilateral mx has nothing to do with the cancer we have treated.  That is a done deal.  Hopefully we did all we could and we are successful.  This is about being high risk for new cancers popping up.  Obviously if I do not go forward at this time with the mx and then another cancer does appear it is straight to the chopping block, no more questions.  Infact, it would be easier in some ways if it was clearly black and white.

    For now I am continuing on with my second opinions and getting the answers I need to be comfortable with the decision.  I have done some research in case I go forward (always like to be one step ahead) and I know I will have to travel from Florida to either NY, Charleston or NOLA.  I would go to NYC since two of my children are there.

    To complicate things, we are seeing the knee dr. for my husband on Tuesday and now we think there is no other choice but a knee replacement.  he did the other one almost four years ago.  He is in terrible pain and quite frankly this is the priority right now.  So, even if it is a yes for me, we need to wait for him to have his surgery and recover enough to be able to travel with me.  That would likely bring us to December at the earliest.  Needless to say as Floridian full time now for over five years, December in NYC, well at least for surgery, is not very appealing..............even though that is where I hail from.

    So still lots to think about, but for now I am waiting for Tuesday's knee doc appt to see where we stand with that for hubby.

    I  was out of town today visiting my almost 89 year old mom, hoping I got lots of her genes.  LOL

    I will keep you all posted.  As always, thanks for all your thoughts.....................Caren

  • thegoodfight
    thegoodfight Member Posts: 560
    edited August 2009

    UPDATE:   CONSULT AT MOFFITT CANCER CENTER TODAY

    I know we all appreciate when our "sisters" keep us updated so here is my latest news.  I met with my second opinion onc from Moffitt today to discuss the idea of the prophylactic dmx and reconstruction.  He clearly felt that we addressed this last year when we came up with my choice of treatment.  He stands by this and said that he sees no reason at this point in time to go forward with surgery which in itself poses risk and a long recovery.  My treatment plan that I completed has given me the same survival as if I had the mx.

    He is comfortable in being aggressive in my monitoring and I will now have my testing done at Moffitt and see him twice a year for results and exam.  I will have mammos and mri's at six month intervals.  This is in addition to the care from my local oncologist.  He is still on my team, I have just increased my team.   More to love.............Wink

    Needless to say I am feeling great and I can exhale, at least for now.  There is no urgency, and maybe, just maybe it will never become an issue in my future.  My first mri is scheduled for December, so now I can concentrate on hubby's September knee replacement.  This is for the second one, so we know what we are in for, but we also know the final rewards.

    Thanks for all you support.  I just needed to give one big WOOHOO!!!

    Caren

  • Snowbird
    Snowbird Member Posts: 124
    edited August 2009
    Whew! Congrats! Have been thinking about you & wondering how this would all turn out for you...  Thanks for the update...  Now, BREATHE!!!!! and know that if you ever need any additional info re: local SWFL surgery, I'm here...  G.
  • Daudine
    Daudine Member Posts: 221
    edited September 2009
    I have no cancer but I chose to have an ovariectomy and a prophylactic bilateral mastectomy last year at 37. I am BRCA1 positive and lost my mother and 2 aunts to BC.

    I don't regret having the surgery...it is tough but I am able to say that I have done everything possible to lower my risks.

     I wish you good luck

    Claudine

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