What are your thoughts on this plan?

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MotherT
MotherT Member Posts: 5
edited February 2015 in Stage III Breast Cancer

I was diagnosed in May 2013 with Stage 3 IDC Breast cancer, 1.8 cm primary tumor and some very small micro areas, 6/11 lymph nodes positive, ER/PR +, HER2-. I had a lumpectomy, a follow up surgery to clean up the margins, 8 dense doses of chemo (AC/T), followed by 35 heavy shots of radiation to breast and clavicle area. I was then put on a daily dose of Arimedex and was told I would be on that for at least 10 years.

After treatment, I had a bone density scan that showed osteoporosis (I am 48), and had blood drawn every 3-4 months for a year. I had a mammogram in June 2014 that showed NED, but since then, I have had no further testing. My MO "retired" from practice, and I just met with my new MO. I told him I was not happy with the Arimedex side effects, so we are changing it to something else (name escapes me right now). When I asked if he planned to do blood work, he informed me that there is no research to indicate that is the least bit effective in indicating the disease. I asked him about tumor markers, and he said the only one that is indicative of breast cancer is extremely unreliable. He did not think it necessary to do any further scans, and said he recommends a yearly mammogram (I have that with the head of the breast center, as she said my mammo would be difficult for a regular doctor to read) and a yearly bone density scan (he has taken me off the Fosamax and suggested the twice annual IV infusion for my case).

My question:  does this seem like we are playing Russian Roulette? To me, it feels like I went from regular checks to nobody watching anything VERY quickly. Part of me thinks I should enjoy being "NED", but then there is part of me that thinks I'm burying my head in the sand, and by doing nothing, we may not find a reoccurrence until it is advanced.

I'm definitely not trying to borrow trouble, but I also don't want to sit idly by...is a once-a-year mammo enough of check in this situation? I'm just looking for thoughts of those who have "been there, done that."

Thanks!

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  • wrenn
    wrenn Member Posts: 2,707
    edited February 2015

    i can only get scans if i have symptoms lasting more than 2 weeks and i only see onc every 6to 7 months where he feels for lumps and asks how i am feeling. Apparently scanning when no symptoms is a waste.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited February 2015

    Hi

    I was treated at Dana Farber. My onc does no do blood tests--says they are unreliable. I have a mammo every year and clinical exams with her, my pcp and my gyn-so 3 times a year a professional is doing a breast check. I was having annual MRI's-I decided to go to every other year--- sometimes there is just too much information. As I get further out (over 6 years) I am less concerned--and as I understand cancer better I can see that sometimes, less is more. There are so many false positives that create anxiety--as an example, I had a lung ct last winter to try to figure out why I could not stop coughing. Ultimately it was due to two nodules on my thyroid. But along the way they found a tiny nodule on my lung--- so I had to get a pulmonary doc and I have to have a ct scan every 6 months for the next two years because that is their protocol--even though he is certain that it is a benign infection. I find these scans anxiety provoking--- and cannot wait until I don't have to do them any more.

    I will say, when I was first finished with treatment, I wanted monthly check ups and tests. Now, a mammogram and a periodic MRI are plenty for me. I also know my body and I can tell when something is up--- and before I was dx, I knew something was wrong--- not saying I can dx myself, but I do try to listen closely--- but not get to crazy over it--hard to do, I know-- and you might feel differently as you get further out from your dx and treatment.

    but, if it is not enough for you, you can ask for more, or get a new doc there are many here who do get regular blood draws....


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