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Hello, I'm a new member of the Royal Order of TNBC Princesses

mom2wil
Posts: 5
Joined: Nov 2012

I've been reading ur posts for a while and finally got around to joining. Some of the posts here were hitting pretty close to home and I couldn't stay on the sidelines any longer. I was dx in july with tnbc @ 46 yo. I just finished with 8 infusions of AC/T. I go Tues for the f/up mri, mammo., and ultrasound. I feel more worried about it returning in the future than this primary tumor. Last tx was 2 days ago and I'm feelin it today. Sore and achy, but managable. Will have to doecide soon betw. the lump, single, or double. Then to reconstruct or not. Some days I think my head spins. Thanks for all the hand-holding. I know I'm with good company already. Thanks, Amy.

jessiesmom1's picture
jessiesmom1
Posts: 726
Joined: Jun 2010

Hi Amy. I am also a member of the Royal Order of TNBC Princesses. I love that designation. At the time of my diagnosis I was married, age 51, and had a daughter who was a high school senior and a son who was a college sophmore. That was 3 years ago. I had a complete axillary dissection followed by a right mastectomy (with tissue expander placed) and then came 4 rounds of A/C and 12 rounds of Taxotere. When all my treatment was over I had my expander replaced by a saline implant. I had a breast reduction/lift on the opposite/non-cancer side. I was extremely dissatisfied with the initial reconstruction result and had it redone 6 months later by a different surgeon. I went with a silicone implant the second time around. Surgeon #2 did a great job in my opinion.

There are so many decisions to make when it comes to breast cancer. It can be overwhelming. My dad is a doctor (although not an oncologist) and when he said he and my mom would fly out to see me I knew I had hit the medical jackpot. As far as reconstruction is concerned, you really cannot make a wrong decision. In fact, you don't even have to make that decision now. You can wait years if you so choose. My husband didn't care one way or another if I had reconstruction. I simply wanted to look "normal" in clothes. I will never look normal unclothed - I have some wicked scars. I am not sorry I did it. As to whether to get a single or double mastectomy versus a lumpectomy, I suggest you have a lengthy discussion with your oncologist and surgeon. You might want to consider talking to a second surgeon to get that opinion, also. Family history is a consideration for some folks as well as size and location of the mass. It is your life and you have to feel comfortable with the decision before you do the surgery.

This Board is a wealth of support and information. Glad you took the step of joining us but obviously not glad for the reason.

IRENE

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I was dx'd Aug 2010 with triple neg inflammatory breast cancer. I was 47 at the time. I did 6 rounds TAC chemo, then bilateral without reconstruction, then 44 rounds of rads.

I wasn't given an option on reconstruction, I was told that with IBC I would have to wait at least a year before considering reconstruction. Now I would rather not go through any additional surgeries, and I am content with my prosthesis.

BTW, I went back and forth on my decision about bilateral vs single mastectomy for the four months that I was in chemo. I eventually chose the bilateral mostly because I wanted to be even. The decision you face is not easy, there are many things to consider. I believe you will make the decision that is best for you.

I'm sorry you have the need to find us, but we will keep holding your hand as long as you need/want it.

hugs,

Linda

laughs_a_lot's picture
laughs_a_lot
Posts: 1369
Joined: Mar 2011

I was diagnosed in Feb of 2011. I was 56 or 57 (I tend to ignore age). I had a lumpectomy for the following reason. The older you are when you have a lumpectomy the safer it is. The odds of getting cancer in the same breast after a lumpectomy increase over years. The way the doctor explained it was this. By the time my chance of getting cancer equalled that of having a masectomy I would be so old that I would probably be dead from something else anyway. So I opted for the lumpectomy. You however are much younger, so take that into consideration. With the lumpectomy I have one full breast and one that is about 75 to 80% of the size of the other. So I have a prostesis but often do not need to wear it. It is more for formal occasions or if I get a better job where people will be interested in my appearance being more perfect.

The surgeon thought the tumor was about 2-3 cm. Once he got in there he found out it's largest dimension was 6.6cm. I also had two positive lymphnodes. So he was wrong about it's size but still I am not too worried having had a lumpectomy becaused the older we are at the age of diagnosis the better our chances of survival. I had done a lot of research on TNBC while off after the lumpectomy and the chemo doctor confirmed that some of the research I had done was right on. If you have no lymphnodes come out positive you will be in very good shape. I remained at stage 2 because of only 2 lymph nodes, and the character of the cells found by the pathologist. So size of the tumor is not the only indicator of what puts one at a certain stage. Good luck with your decision.

mom2wil
Posts: 5
Joined: Nov 2012

Thanks for the welcome Irene, Linda, and Laughs a Lot. Hope u r well. My mind is spinning with ?s 4 tomorrow's appt with my surgeon. I appreciate all the input with the reconstruction. Right now I'm thinking just get the cancer business taken care of and worry about recon later. But I'll prob chicken out later. I'm sure we'll come to some decision following our meeting.
Thanks again, girls. Amy.

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