anyone have a re-occurance with bilat masectomy?

KLynn

Hi Colleen,

    Yep here, I had a bilteral mast. in 2000. I had bc in one breast but like you wanted to remove both for more protection. I said give me everything you can now, I don't want to do this ever again. I had bilat. chemo, radiation, and then went into the original Herceptin trial for 1 yr. Next was tamoxifen for 5 yrs.  Seemed like I had everything, but I did have 6 of  17 positive noeds.

    Just before I finished my 5 yrs , on tamox in 2005  I had my recur to my lungs. I was feeling fine, no symptoms. Routine blood work showed  a slight increase in my tumor markers. They were slowly rising and doc sent me for scans. I had many many spots throughout both lungs, I am er/pr ++++and her2 +++. I just did 2 yrs of chemo (different ones over the 2 yrs) and Herc, again. I am in remission after 2 yrs,of treatment, it seemed to take forever to get rid of those little buggers. I now get herceptin every 3 weeks and lupron shots monthly( for my hormonal treatment).

    Not sure how many women that have had bilaterals get recurs, but you have to do what you feel is best, and not second guess yourself if it does come back. It is what it is, just have to stay on top of scans and routine blood work. Good luck with everything, and hope some of this helps.

    Hugs KLynn 

colleen42

Reoccurance is a scary issue to have to face! I dread every Dr. apt for fear they will tell me that I have it back!  I feel great, but never realized how many women have to deal with this dreaded monster more than once in their lifetime. 

God bless and thank you for all your personel experiences. I just pray everynight that they find a cure for all (mets,) cancer!

Loki007

I have what I *think* is a related question-I had a bilat mastectomy (well, 6 weeks between the two surgeries) 6 months ago. My surgeon cut me loose(so to speak) 8 days after the second surgery-said I was looking great, have a nice life...and I haven't seen anyone in regards to the cancer-no check-ups, no scans-until I went for my yearly pap last week and mentioned the mastectomy, my docs didn't even have it on file I had HAD cancer.

Granted, it was *just* DCIS, but should I be/have been followed a little more closely? Are there additional tests I should ask for? IS there a standardized protocol? I am 30, had extensive DCIS Grade 3 with lobular involvement in the left side....



Thanks for any input!!

megan

davisfamily70

Megan,

Where are you from? Is there a cancer center near by?

Did you ever consult with an oncologist?

You are only 30!!! My heart goes out to you.

I believe that you need get a copy of your pathology and consult with an oncologist-you need to take the bull by the horns here and make sure that you have protected yourself as well as you can.  I live near Roswell Park Cancer Institute, I know that they have

extensive support networks that you can call with questions.

Mayo clinic also has an online support network that will answer specific questions about your care, and Johns Hopkins also has an "ask the expert site"  http://www.hopkinsbreastcenter.org/services/ask_expert/index.asp?cat=18

You might want to float your situation out there and see what they have to say.

Good luck, you have a full life ahead of you, take care of yourself.

Loki007

I'm currently in Idaho, and there is a tumor institute about an hour from me...I did see an oncologist right after the first mastectomy, but only once. Since I had a prophylactic mastectomy on the other side, I was told no further treatment was necessary. I really didn't think much about it, or at least TRIED not to until my gyn visit..she was livid that there were no follow-up visits, or even phone calls. Much less nothing in my record! She said something about a tumor board...didn't think I needed any such consideration since the cancer wasn't invasive.

I live on a military installation, where most of our family care is located in one facility, so i thought it quite odd that the records weren't up to date.

Thanks for the link and the suggestions on hotlines. Didn't want to be the squeaky wheel unless needed, but I guess it really couldn't hurt, eh?

megan

koshka1

Hi Krissey,

You are not alone in this.

I had my rads treatment today and met a lady who had DCIS 5 years ago. Had a mast. No rads and no chemo.  Had Diep Recon. And Tamox. And 5 years later had invasive cancer return to her DCIS breast.

She is doing fine now and is fighting that battle!!

Hugs to You!

Kosh.....

hi5

Unbelievable!!!! how do you detect a recurrance in a reconstructed breast?  I had bilateral mast with expanders and then found out I had the brca 1 gene so had ooph and hyster...guess there are no guarantees, are there?

pip57

Hi, hope I'm not too late. I had bilat with no recon. I am just one year out and am having a small lump removed from the 'good' side tomorrow. Was feeling confident that it is nothing but I guess that may not be so. I am glad I didn't have recon as I wonder how long it would have gone unnoticed.

Nichola

I had a recurrence in my reconstructed breast and to be honest it was pretty obvious as I had a skin sparing LD reconstruction and the lumps were really near the surface. (Had to have the whole reconstruction removed...)

Interestingly, the radiologist was convinced the lumps were nothing and only biopsied one to me on the safe side.....

I was only a stage 1, grade 1 before and I can tell you the shock was enormous....!