Need help with surgery decision

minatabo

Hello,

I'm 31, newly diagnosed with breast cancer.
I was initially diagnosed on the left side with IDC (invasive ductual carcinoma) and planned for lumpectomy. 2 days before the surgery, my biopsy results also showrf something on the right. Its very small in size, and its called DCIS-MI (MI= microinvasive) - a precusor of cancer i was told.

Considering my age, the sugeron stated its rare to have breast cancer on both breast. He recommended double mastectomy vs lumpectomy on both side as my 2 options.

Has anyone encountered simliar situation? Does mastectomy prevent me from having chemo and radiation? (I don't have kids yet so chemo may affect fertility down the road)

Please feel free to share your stories/thoughts.

Thanks.

lintrollerderby

Welcome and although I'm glad you found us, I'm sorry that you have cause to be here. I was diagnosed at age 34 and it's hard to undergo this at a young age and with unique risk-factors based on age. If you've been diagnosed, you should have a report that states tumor characteristics such as Estrogen Receptor (ER) positivity or negativity, Progesterone Receptor (PR) positivity or negativity, and whether the tumor has an abundance of HER2/neu. Those stats will play a big role in your treatment plan.

To answer your questions about mastectomy preventing chemo and radiation--no. In certain circumstances, it MAY have an affect on radiation, as both are local treatments, but not on chemo--which is systemic.

Yes, chemo can affect fertility, so if future pregnancy is something you may want, there are options you can discuss with your medical oncologist (MO).

I wanted to add that DCIS is sometimes considered pre-invasive cancer, but DCIS-Mi means that it has already started to undergo the change to invasive, so it's no longer considered a pre-cancer at that point. A malignancy in both breasts is called bilateral breast cancer and although rare, there are people here on this board with it.

Please feel free to ask questions.

Best of luck.

Smurfette26

Sorry you have found yourself here minatabo especially at such a young age. As stated above BMX does not automatically preclude you from chemo or radiation. There are many other factors to consider. Your age, the grade of your cancer, node involvement and of course the ER/PR and HER2 status of your tumour. If you are considering children in your future you may want to discuss your options with your Dr before you begin treatment. You will find a wealth of knowledge and amazing support on these boards. Avoid google. Thinking of you. Donna.

exercise_guru

this is very similar to my diagnoses but I am 42. I had a small tumor in my left breast that requires chemo regardless of the the DCIS found in the right breast. I had a BMX because the right breast had DCIS that spread in two places larger than would be appropriats for a lumpectomy. I just decided to go ahead with a bmx rather than a lumpectomy on one side and mastectomy on the other. It turned out to be a good choice as there was IDC in the right breast among the DCIS. Because my nodes were negative I did avoid radiation but not chemo

These are questions worth considering .feel free to pm.me

What was your original treatment plan? Did they send our for an oncotype?

Yes dbl breast cancer is less common. Your odds of even getting breast cancer in your 30s is like 1 in 200. I have read of dbl breast cancer on this board I am definitely not the only one.

Moderators

Minatabo-

We're so sorry you find yourself here, but we're glad you've joined us, and hope you find this to be a place of support as you begin down this road. You've already gotten some great advice and info from Lintrollerderby and Smurfette; you may also want to check out the forum on being diagnosed at a young age, there's a lot of info there on preserving fertility before beginning treatment: https://community.breastcancer.org/forum/27

We hope this is helpful!

The Mods

jinmo

Minatabo,

I am recently diagnosed (DCIS) and waiting for surgery, leaning toward a double mastectomy due to family history. I don't really have any specific help for you as I am 50 and fertility is not a consideration, but just wanted to send some support your way. It's a hard decision.

Jinmo

minatabo

Thank you for all your replies, I really appreciate the info and support.

A little more info about my results:

On my Left: multiple nodules. One (<2cm) confirmed malignancy at 2 o'clock from nipple. At 12 o'clock, they found a mucocele-like lesion thats only 0.8x0.3x0.3, which the doc suggest to remove. Has anyone had that before?

My concern is, from the MRI, on the left they also saw a retroareolar (behind the nipple) nodule but the doctor said they cannot biopsy it based on the location of it. The surgeon said the only way to find out is through mastectomy, or to shrink it through chemo/radiation.

My BRCA results were negative. I don't have the results for ER/PR yet. The original plan was to do lumpectomies with sentinel node biopsy on the left (and leave the retroareolar one for radiation). Now because on my right, they found 2 less than 0.5mm DCIS-MI, based on my age, they brought up double mastectomies vs 2 lumpectomies

I'm torn deciding between the 2 sugery choices. To me, I feel like my nodules are small enough for only lumpectomies and hoping chemo/radiation will help with the rest. Mastectomy would definitely take a hit on my body image (considering i'm still single, no kids).

Has anyone been through this? Mind to share your 2 cents?
Much appreciated.

Anonymous

Hi Minatabo- I'm so sorry you are here as others have expressed! My one suggestion if you can do it is see your oncologist to help with this decision. My mother had BC on two different occasions and then colon cancer. My biggest frustration was we would see a surgeon, get a course of action, and then after the fact- see the oncologist who would have different views (one time she had a lumpectomy on the strong suggestion of the surgeon, and then afterwards saw the oncologist who said no- go back for a mastectomy).

When I was diagnosed in August- I was overjoyed that who I was referred to, works as a team - surgeons, oncologists, radiologists, radiation oncologists. They meet weekly, they get on the same page for your treatment plan. It has been a Godsend.

Wishing you well.....

Wicked

What swayed me on doing the BMX was that both my original surgeon and second opinion surgeon and their Tumor Boards thought I was highly likely to recur without one. I know there is a thread on here that has a list of questions to ask yourself before deciding on surgery. Doesn't give answers, just things to consider that might influence your decision. Hope it might help- https://community.breastcancer.org/forum/91/topics/773030

ElaineTherese

Hi!

You are very young to be a BC patient. I'm sorry to hear that you have to go through all this at your age. Has your surgeon talked to you about reconstruction? Many BC patients here have had good results from reconstruction, and that can help with body image.

I chose a lumpectomy, but that was after five months of chemo and the disappearance of my lump. I did not want to do reconstruction (can take multiple surgeries), and I wanted to retain feeling in my breasts. But, many women can't opt for lumpectomies because they have big lumps or mulit-focal cancer or whatever. For them, mastectomy and reconstruction are the way to go.

It may help to wait for the results of your initial tests rather than worry too much about surgery right now. When it turned out I was HER2+, I ended up doing chemo first, which gave me five months to think about my surgical preferences. I'm glad I had that time.

Best wishes!

Trvler

I would get a second opinion if you are unsure. I got a 2nd and 3rd opinion because I was not comfortable with the recommendation of the first guy. It's a long story I won't bore you with.

Mombytheriver

hi minatabo,

I was diagnosed with bilateral breast cancer this summer and alsohad the choice between lumpectomy and mastectomy. I had two completely diffeeent types and it is unusual but not unheard of. While deciding it almost seemed cruel to even have to make that choice. I chose BMX with immediate tram flap reconstruction and am happy with the result. Try to think about your life after cancer if you can and and which outcome will make you most comfortable. You will feel better when you have a plan. Feel free to pm me at anytime.

BIg hugs - Patti

T007

I was diagnosed in November with DCIS in right breast approximately 3.5 cm. Also have benign cysts in same breast. Because of lengthy family history my family is recommending that I should get DMX the surgeon recommended lumpectomy with 40 rounds of radiation. I don't know what to do however iI am ok with losing my right breast just not sure how I feel about left. Biggest pro is symmetry!! Waiting on test results for BRCA

Moderators

Yes, T007, it is often a very difficult decision, and a very personal one. Getting the genetic testing results will certainly help to make your choice. Have you considered a second opinion?

T007

No I haven't but perhaps I need to start looking. I am not scheduled for anything until the end of month. The surgeon keeps telling me she will do whatever I want but I want to make the right choice. I honestly am concerned about radiation if it is not necessary and at this time the mastectomy would eliminate that unless they find something after surgery.

Trvler

If you go with mx, have you thought about reconstruction? That's a whole other ball of wax.

SkiChick86

Hi Minatabo,

As others have said, I'm so sorry you're here. I don't have much experience because I am still getting my plan in place (diagnosed yesterday) but I wanted to say hi. I am 30 years old and like you fairly shocked that I'm going through this. I will likely be needing a mastectomy, and body image is a big consideration for me. I feel silly saying it because obviously my life is more important, but yeah, loosing a boob still sucks.

Anyway, I hope you're doing well with everything and I'll see you around.

minatabo

Hi SkiChick86,

Sorry that we had to meet in this forum here. But just wanted you to know that you are not alone in this battle.

I went through my lumpectomy (multiple) surgery....the patho report said margins weren't clear on several of the spots...so it seems like my next step is double mastectomy....after chemo. Definitely a shocking news, I was hoping if the surgeon could cut a little bit more and get negative margins I wouldn't have to go through this. Sigh. It really sucks....and I had a feeling this was going to happen....

I guess on the bright side, the DMX would reduce my risk of having reoccuring breast cancer. as the surgeon explained, it is very rare for someone my age (31) to have multiple invasive cancer on BOTH breast....something definitely is going on in those tissues even tho my genetic testing were negative.

Hope everything will go well for you. Feel free to PM me for anything.

Minatabo.