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Tamoxifen and mental health

Breast Cancer | Last Active: 4 days ago | Replies (71)

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@einnoc

Following along with my thoughts that, as someone who cannot tolerate A.I pills OR Tamoxifen, and also someone who has had horrible gashes spring up after my more recent mammograms (6" x 3", took 6 months to heal) I have asked about the Signaterra test. In Iowa City, the oncologist was dismissive of my inquiry. His remark about how Medicare would "never pay for that for you" caused me to research the cost with the company (assuming no insurance coverage) and I posted that here earlier. I then wrote to the I.C. people to ask if there had to be a certain level of illness before it would be covered for most patients. Here was the response:

Doctor's response:
"He says that Signatera is covered only for stage 2B or higher.
There is no role or indication for such testing for some one with early cancer.
Doctor again states that this is his recommendation and that if your local Texas oncologist wants to order something like that, there is a chance that your insurance may not cover the cost of the testing.

Everything in my original presentation looked good, I thought---until I got my oncotype (17 months after the fact, finally) and it was 29. I've tried to learn to adjust to both Anastrozole and Tamoxifen and it has not gone well. The cost if insurance doesn't cover it was listed by the company as $395 if billed to the patient out-of-pocket. My question is for those of you who have had this test. I think my life--or my peace of mind---is worth that amount out-of-pocket and there is also the possibility that, if I were to inquire, the insurance might consider covering a portion of the cost. My original tumor was 11 mm, 95% estrogen positive, no spread (to only one lymph node tested) and good margins. I could not get my original Illinois oncologist to order an oncotype, nor could my original surgeon get him to order a ki67. Later (17 months later) my Texas oncologist got the oncotype for me, and it was not as positive as the other things I mention. (I think I was 1A for staging, but not sure). Those of you who have had the Signaterra test, how difficult is it to understand and what was your stage when it was ordered for you. I don't seem to merit any consideration for the constant "looking over your shoulder" effect that one gets when they should possibly have had 3 bouts of chemo and got none because their original oncologist "didn't want to get dinged by Medicare." I'm more than willing to pay for the test myself, if it can really be obtained for the $395 they quoted me from the company. I'm trying to get this figured out and set in motion BEFORE I have my next regularly scheduled appointment with the Iowa City doctor (who has, so far, never even "looked under the hood." I'm not kidding. He has not examined me in any way, shape, or form, although, at meeting #2, he said he was going to conduct an exam at "the next appointment" but then did not. In fact, he didn't even enter the room completely, but just stood in the doorway and said "hi." At our first meeting, he told me that he had seen 22 women that morning and I was the healthiest of them. I appreciate this and am glad that that is the case, but that is the attitude that has been foisted on me by oncologists in Iowa AND Illinois and only Texas actually ordered the oncotype and found that it was over the threshold of 25 and that my odds of a recurrence if I don't take Tamoxifen for 5 years are 36% and my odds if I do drop to 18%. If you have experience with the Signaterra test, I'd be interested in learning if you were a 2B (or higher) and, also, if you felt it gave you increased feelings of safety from recurrence, because I'm not feeling that I can rest easy without some form of checking on this beyond a doctor who doesn't even enter the room or do a breast exam. Thankfully, my Texas doctor HAS been taking my concerns seriously, but, so far, the Signaterra discussion has not come up with him. I guess when you're old (78 now), they simply don't want to be bothered. One of these oncologists actually said to me, "Cancer isn't going to kill you. Something else will kill you first." Doesn't help my insomnia.

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Replies to "Following along with my thoughts that, as someone who cannot tolerate A.I pills OR Tamoxifen, and..."

I would certainly find an oncologist! You should have been treated with more respect no matter your age!