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CONFUSED's avatar
CONFUSED
Member
9 years ago

monitor or prevent????

i finally had the breast reduction i have been promising myself for years,and when i went for my 2 week check up my plastic surgeon told me the pathology had come back with lobular carcenoma in situ - which he says is really not cancer just the marker of increased risk, however referred me to an oncologist to find ot how to bes monitor it.

When the oncologist was explaining the pathology report he said i actually had Pleomorphic LCIS which was a whole different ball game, i still don't have cancer but PLCIS is more like DCIS and i have abnormal cells which if left would turn into aggressive cancer in the future. i have 3 young kids and am just not willing to take the risk so we decded a mastectomy with immediate reconstruction was probably for me. The oncologist did say he wanted to get a second opinion from the pathologist he has used for 20 years just to double check.
 i received the call tonight that the  second pathologists opinion is they don't think its pleomorphic at all, just LCIS , there may be a small amount of PLSIC there but that was probably all taken out  with the reduction, and the oncologist thinks  i could just be monitored every year with an MRI, however he did say its not back and white and  the decision is up to me

i am so confused -i just cant understand how opinions can differ so much - .
 I am not a fan of major surgery for the sake of it,but what really worries me is MRI's annually will only tell me once i have developed cancer  - and it seems she is only assuming all the PLCIS was removed with the reduction. am i crazy to still be thinking why take the chance?

Has anyone else had a similar experience?

13 Replies

  • Thank you Chris,
    You are right my gut instinct is to have the mastectomy - i do tend to be a worrier for a start and i would just never forgive myself for putting my kids through something i could have avoided, plus PLCIS is relatively new diagnosis ,so there are very few studies out there that can give me reliable statistics . i don't underestimate  the seriousness of a mastectomy and  i know there are no guarantees, but i just think if i have been so fortunate to be given the "heads up" a lot of women don't get i need do whatever it takes to minimize my risks.
    xx

  • Goodness! That is a really hard one!!! It really comes back to what you feel in your gut, your instinct. I was initially diagnosed in 2011 with DCIS, I had aggressive treatment my Surgeon said of Radiation and Tamoxifen for 4yrs. My annual check up last year showed a recurrence but hard to detect as it was in the scar tissue from the previous lumpectomy 4yrs prior. It was IDC Stage 3 aggressive, very lucky but I had to undergo Chemo 4.5 months and now on Arimidex. Due to a recurrence, eventhough Id had 2 major lumpectomies, clear margins both times and no lymph node involvement, they recommend a mastectomy and reconstruction as its a gamble. I am negative to BRCA Gene testing so have elected just a single mastectomy, which I am still struggling with doing, and yet struggling not to for fear of a 3rd time. I agree do your homework and hopefully some ladies can chime in with their experiences to help. Hugs Melinda xo
  • It can be so confusing when opinions vary - unfortunately with this disease there are so many variables.  At the end of the day it is your body and your decision.  You need to decide what is best for you and weigh up the risk of the disease, the stress of "what if " and if annual monitoring is the best option for you. 

    It it is not easy to go through analyzing pros and cons of all the possible scenarios, and what each choice means in terms of impact for you and your family.

    i suspect though in the back of your mind you have a preferred option - try not to second guess yourself too much and go with your gut.  

    Ask lots of questions so that that you are comfortable with your decision.

    all the best

    hugs

    Chris xx