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 mei 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?

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 besthugsChris 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

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

Wow Mel ,you have been through so much, and you are clearly so brave , i am pretty tough and i would like to think if i ever was diagnosed i would face it just as bravely i suppose i have also made the assumption that if i have a mastectomy there is no chance of cancer in that breast? i would just have close monitoring of he healthy breast as once you have had lcis in one breast you have increased risk of getting it the other.Can i ask if the struggle with the mastectomy is physical or emotional ?- have you had a reconstruction ? ( please don't answer if you are uncomfortable )i truly hope the mastectomy is it for you, and have nothing but good health from now onxx

I chose a bilateral mastectomy as my mammogram 5 weeks prior me finding a lump didn't show changes. I apparently had very dense breast tissue which I only found out after seeing the breast surgeon. I had immediate tissue expanders inserted with a dermal matrix and 3/4 filled, meaning I awoke with breasts...much to my shock. I still have changeover surgery to go but certainly am happy with the appearance already. I miss the sensations of my breasts but have accepted for peace of mind it was worth it. And so much lighter than my original boobs. I too was going to have a reduction. ..and cursed myself for not pursuing it at times as it would have been found then...as it was the right spot for that. So I say yeah...how lucky are you to have had it found at this stage. Best of luck with your decision making. Kath x

monitor or prevent???? | BCNA Online Network

13 Replies

melclarity
Member
9 years ago
Absolutely! and that's peace. All the best with everything! Hugs Melinda xo
CONFUSED
Member
9 years ago
Thanks you so much ladies for sharing your experiences with me.i think i knew what i was going to do all along but you certainly helped me think it through and confirm it is the right decision for me.

take care xx
primek
Member
9 years ago
My breast surgeon suggested the bilateral and I agreed. I would have needed extensive surgery to remaining breast to even remotely match them...but you have had that pre done, so much easier that way.
melclarity
Member
9 years ago
I actually agree with you, sounds like you may have a decision
CONFUSED
Member
9 years ago
i am so happy you are clear, what a terrible stressful 5 years. i suppose i just don't have that emotional attachment to mine - apart from breast feeding my babies, they have really just been a source of discomfort and i was sooo excited to have the reduction finally. i imagine mastectomy and reconstruction are far more extensive than my reduction but i didn't findt that any where near as bad as i had been warned it would be, so i suppose i am just thinking i will cope much better with recovery from major surgery, than feeling like i have a ticking time bomb inside me
melclarity
Member
9 years ago
Gee half my post was missing lol. Geneticists said I am no higher risk of getting it in the other Breast at all. So this is prevention. You are caught early so I really think you'd be more than fine! Xx
melclarity
Member
9 years ago
The mastectomy is emotional to be honest and I guess a little physically. It won't be until about end of February and they're doing a Diep flap reconstruction all at once. I think too just harder mentally dealing with a recurrence. I handled the first diagnosis better. But I am all clear
CONFUSED
Member
9 years ago
thanks so much Kath,
i got the letter my mammogram was clear the day i went in for the reduction, and i think perhaps that is what frightens me the most. If i hadn't had the reduction i would not have known until i was in a situation like you, .
the oncologist says he would not support a bilateral mastectomy as there is just no justification in my case, and i am comfortable with that but he would certainly still support a single mastectomy if that is my choice.
primek
Member
9 years ago
I chose a bilateral mastectomy as my mammogram 5 weeks prior me finding a lump didn't show changes. I apparently had very dense breast tissue which I only found out after seeing the breast surgeon. I had immediate tissue expanders inserted with a dermal matrix and 3/4 filled, meaning I awoke with breasts...much to my shock. I still have changeover surgery to go but certainly am happy with the appearance already. I miss the sensations of my breasts but have accepted for peace of mind it was worth it. And so much lighter than my original boobs. I too was going to have a reduction. ..and cursed myself for not pursuing it at times as it would have been found then...as it was the right spot for that. So I say yeah...how lucky are you to have had it found at this stage. Best of luck with your decision making. Kath x
CONFUSED
Member
9 years ago
Wow Mel ,
you have been through so much, and you are clearly so brave , i am pretty tough and i would like to think if i ever was diagnosed i would face it just as bravely
i suppose i have also made the assumption that if i have a mastectomy there is no chance of cancer in that breast? i would just have close monitoring of he healthy breast as once you have had lcis in one breast you have increased risk of getting it the other.

Can i ask if the struggle with the mastectomy is physical or emotional ?- have you had a reconstruction ? ( please don't answer if you are uncomfortable )

i truly hope the mastectomy is it for you, and have nothing but good health from now on
xx