Survivorship Care

Rayna_666

I was wondering how everyone's oncologists handle survivorship care. I am about 2 years post triple negative breast cancer. I had chemo, bilateral mastectomy, and radiation. I also have the BRCA1 mutation. I had all of my treatments and surgeries in Wisconsin and I adored my doctors. They did not do much for follow-up other than a basic exam every so many months. They said blood work and scans were unreliable and more stress than they are worth.

I have recently moved to Texas. My oncologist now had me do a bunch of blood work (CBC, tumor markers, etc.) He also wants a PET scan. Is this excessive? Or was my oncologist in Wisconsin too lax? They were amazing all around and I trust them. I was curious how others handle it.

ipenelope

Rayna- My MO has also commented on no scans or testing unless something comes up that is worrisome to me. I do not like this as every abnormal ache or lump I feel I question. During chemo I didn't worry about it too much and I'm a couple weeks shy of 6 months pfc and it is really on my mind. I hope more ladies respond to your post as I'm going to follow it.

I hope everyone has a wonderful week!! Keep up the fight, no matter what stage of the fight your in, to kick cancer's ass!!🥊🥊

~Katie💗

PawPatrolMom

Hi...we pretty much have the same exact treatments. Both my radiation oncologist and medical oncologist recommended PET Scans (they are not from the same institution). My MO wants me to do it twice a year for two years then one more time the third year due to the chance of recurrence being higher in the first 3 years for TNBC. Knowing that in 2 years I won't be doing it twice a year scares me but I also know that the recurrent radiation isn't good as well. As Katie wrote, every little thing makes you think but I hope this gets better with time.

My RO/MO rationale is also that they prefer to catch it during this 'high risk' period early rather than wait until actual symptoms were present.

Overall, I have read many places that no surveillance is recommended

JosieO

Interesting topic and I am sharing my experience in the hope that others will also comment.

I was diagnosed in early 2018 and had a lumpectomy, extensive radiation (I had cancer in one lymph node), and now take Arimidex. Had a MammaPrint test, which indicated chemo was of no value and I was so estrogen positive (100 percent) that an aromatase inhibitor was a no-brainer

I see my medical oncologist twice yearly, and he has been the most active in surveillance. Blood tests each visit, and has also managed my anemia and the beginnings of osteopenia. Does not believe in PET scans without a demonstrated need.

Annual visit with my breast surgeon, who orders and reviews my mammogram and ultrasound if needed. Still see my radiation oncologist annually as well.

When I was in active treatment, these three outstanding doctors stayed in constant comment about me, and still do so. What I find particularly helpful is they check the last time one of them gave me a manual breast exam and give me one so that not too many months go by between them-maybe 4 months maximum. My cancer was not palpable but was a large tumor with a great deal of DCIS as well, so I find this active surveillance comforting.

I trust their treatment, and with good communication back to my primary care, I feel very well managed.

Love them all. They saved my life

ipenelope

Hello everyone. Kber I really like this thread thank you for stating it!!

Im wondering how many ladies noticed emotions changed and more bothered you the father out from treatment you went?? I'm just about 6 months pfc and lately my emotions are terrible!! I'm comparing myself and my body to others alot more and it's really affecting my mood. Im usually a pretty positive person and have been through everything going on so this is definitely not me.

Thoughts on this would be greatly appreciated!! I see my PMD next week and if this continues I will ask to get on something though I would really rather not.

Thank you~

Katie💗