Post-treatment after care 3 years out - Docs not helpful!

Anonymous

I was diagnosed in 11/08, underwent a bilateral mastectomy with reconstruction on 12/30/09 - my stage 2B cancer (only in left breast) was surgically eliminated and (hopefully) all my breast tissue was removed. I underwent chemo 2/09-5/09 as a precaution, and also had radiation treatment 11/09-12/09.

I also had three reconstruction surgeries, ending with a DIEP flap 11/10 + 2/11. I am very happy with my new and improved body, my labs come back normal routinely, but psychologically, my fear of recurrance seems to be getting worse.

I feel I had excellent medical care, I love my doctors, but I am increasingly troubled by their aftercare recommendations for me: basically, no scans are needed, just bloodwork and physical examinations every 6 months. But I am very concerned about this "wait and see" attitude, especially since I know my body knows how to make cancer. My mom had breast cancer and colon cancer, though I tested negative for both BRCA tests.

It doesn't help that 3 oncs "missed" that i've been on sertraline while on tamoxifen these past three years, and zoloft is not the antidepressant of choice for tamoxifen patients. Thankfully I've recently weaned off. But this also doesn't help my anxiety level.

All my doctors tell me, stastically, the survival rate of women who's breast cancer was 99.99% surgically removed, and who get regular scans, tumor markers, etc, isn't any better than women who get scanned when something goes awry ... I DO get this. My breast surgeon put it the best way: "If I thought scans would be an effective diagnostic tool for you, I'd do it in a heartbeat." Which made me feel better. But stats are not comforting me right now.

Maybe I should find an oncology shrink?

Kindergarten

Hi, Lisa!!! We have similiar stories, except I had bi-lateral breast cancer, the worst being 2b in my left breast. I have had 3 different oncologists since diagnosis, hubbys job transfers. All of my oncs also just did bloodwork and physical exams, no scans unless I complained of pain, which I have had none. We have retired to CA, to be near our sons and my new onc is very, very thorough and for the first time ordered the CA 27.29 test. With nothing to compare it to, my tumor markers were slightly abnormal, so of course I am in a panic. She told me not to  panic, because this test can be very unreliable. I wish now that I would have never had this test. I will repeat the bloodwork in a month.I know what you mean, are we breast cancer patients being followed closely enough!!!! I am almost 8 years out and the worry never ends. Hey, we are both going to be fine!!!!!

momof3boys

I think your MO should also take into consideration your mental health. While I was undergoing chemo, I had a blood test come back high....my MO was not concerned with it at all. Of course, I was obsessed with it. She finally ordered a bone scan. I asked her "do you think it's in my bones?!?!" she replied, "no, I do not. But, I can see that you need this in order to be able to move forward, so we're going to do it". Love her! She just gets it. Her mom had BC 16 years ago.

Anonymous

Kathy - thanks for taking the time to reply! 8 years, good for you!

On the plus side, be thankful that you have such a thorough doctor.  This "leaving it to me to decide whether I want these tests or not" c*rap only adds to my anxiety. It also sounds like this will be your baseline test, which your onc will use to compare subsequent tests.

 Please keep me posted - I'll have all parts crossed you get good results - and also, feel free to send me a PM!

Anonymous

momofthreeboys - thank you, also ... food for thought.

i wish i had a doctor who would say that to me.

Kindergarten

Thank you, Lisa, for your well wishes. I am sure everything will be fine, but I love coming here for support!!!! Momof3boys, your onc sounds like my onc. She said the same thing to me, if I wanted a scan to put my mind at ease, she would order one. She is the first woman onc I have had and just understands. My first onc in Pittsburgh was just wonderful and he saved my life and I will never forget him, but we women like to talk and my onc here really listens. Bless her heart!!!!!

TiffanyF4

I feel the same way! I will be 3 years out in Sept. I was diagnosed at age 34 triple negative 2b and brca1 positive. I had a bilateral mastectomy, chemo and radiation.  I have been released to 6mth check ups. However, at my last check up they didn't do blood work or a physcial exam and I haven't had a scan in over 2 years. I am concerned with this "wait and see" attitude myself.