Frustrated and need to vent!

bluedolphin

Hi, I was diagnosed at the end of last year with DCIS in both breasts. I had lumpectomy in both breasts. I now have DCIS again in both breasts and IDC in my right breast and I am her2+. I am 21yrs old and seem to be having trouble when it comes to determining treatment. On one visit my surgeon tells me that I should have a bilat. mastectomy, and I need to consider oopherectomy and in the next visit she tells me that because of my age she wanted me to go for genetic testing before doing surgery as I am so young. She said if I do not have the BRCA gene mutation then I might want to reconsider a mastectomy. She also told me that I could not have another lumpectomy on either breast as it would require removing more than 50% of my remaining breasts. I would not even consider having my ovaries removed so that is out of the question. I have a family history of both breast and ovarian cancer on both sides of my family, which is why she suggested that. My oncologist said I should consider a mastectomy, but he would like to try chemo, radiation, and Herceptin first and then see what happens. I started radiation treatment this week as well as Herceptin as the oncologist wanted to see how I react to both of those things while I have more testing done and decide on surgery/ chemo, or both. I'm so confused when I go to the doctors because they tell me they think I should be doing a specific treatment, but then say they don't know if they want me to do that because of my age. I am tired of hearing that I am so young and it's rare to see anyone my age with breast cancer. I have it and now I just want to get rid of it. What difference does it make if I am 21 or 60? I'm just very frustrated. Anyone else have this problem or any advice?  

ejlj

so sorry you are going through this.  i'm sure all this information is very confusing and overwhelming.  I could be wrong, but I was under the impression that dcis usually was treated with mastectomy.  They can do wonders today with reconstructive surgery.  I know the thought of losing your ovaries is terrifying to you, but genetic testing sounds like the right thing for you right now. If it comes back poritive for the genetic mutation, you may want to seriously reconsider your options being that your tumor is driven by hormones.  Are you only on Herceptin?  HER2 tumors are pretty aggressive and need to be treated as such.  I wish you well.  Tina 

nash

ejilj--DCIS can be treated with lump/rads depending on its size. Same with invasive cancer.

bluedolphin--sorry you have to deal with all this so young. It sounds like the surgeon is recommending bilat mast b/c there is not enough breast tissue left to do lumpectomies, and the oncologist wants to try neoadjuvant chemo to shrink the tumors down before surgery so that you can have lumpectomies.

I don't see how you're going to get out of chemo/Herceptin with your HER2 status, the grade of the tumor and your age. So whatever surgical option you chose, I would imagine chemo is in the picture.

And I think it would be wise to get BRCA tested. If you are BRCA positive, it would be prudent to remove your ovaries. The risk of ovarian cancer is very high in the BRCA population, and it's pretty much impossible to detect it early. 

Anonymous

bluedolphin: I was not young when diagnosed (49), but want to "chime in" and tell you I'm sorry you are having to deal with this. Just know that we will help in any way we can. What I learned while going through my journey is that hardly anyone gets and concensus on what do do with their case from their docs. Listen as best you can, have someone else with you to hear the recommendations also if you can. Make your best decision at the time and then go for it. Lots of us here would have done something differently in hindsight, but most importantly we are here to worry about it! Hugs and Prayers to you.

Dejaboo

You are too young- Its not fair that you are dealing with this -yet again!

I really dont know what I would suggest for treatments.  I would definately have the BRAC test done.

Here are 2 sights that may help you along with this Great forum.

There is the:

http://www.youngsurvival.org/

 And Also FORCE (if you do the BRAC test And find out you are +)

http://www.facingourrisk.org

Pam