Tamoxifen and mental health

Posted by aspapla @aspapla, Jan 23, 2023

I started taking tamoxifen as part of my BC treatment a couple of weeks ago and have been really struggling with nervousness, anxiety and depression from the first days of taking this medication. The effect on me feels similar to PMS but intensified, and having it every single day.

As this is a long-term treatment (my oncologist told me I would be on this pill for 10 years as I also have a genetic predisposition), I wanted to ask other women whether such side-effects of tamoxifen subside over time (and how long would that be!), or if they are part of the whole duration of the treatment. I can't wait to go back to my usual mental state and am hoping I am still only adjusting. I have been prescribed with Effexor which I am about to start, but I also would not want to be on anti-depressants for the whole 10 years of Tamoxifen.

Thank you very much,
Aspa

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@colely

And I would like a Signatera Test as well!!

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After my Iowa City oncologist made the remark about how Medicare would never cover Signaterra for me. I have wondered, since then, if that was because the one seminal node biopsy removed during the lumpectomy did not show any spread. My original Illinois oncologist was completely opposed to ordering any expensive tests and another doctor on his team told me it was because "He doesn't want to get dinged by Medicare." Hence my story of his refusal to order an oncotype OR a ki67. I was so curious about this $20,000 figure he threw out during our brief meeting that I wrote to the company. Here is what the makers of Signaterra wrote me about the use of their test (whether covered or not.):
Topic: General Question.

Hello,

Thank you for contacting Natera,

thank you for the information provided, after reviewing your inquiry we would like to advise you about the cost for the Signatera test, the selfpay rate or prompt pay cash is $395.00 per test not using insurance, if you want to bill your insurance the amount billed would be $3920.00 per test and the total amount covered would depend on the insurance answer we will receive.

If you have any more questions, please feel free to call us back through this number: 844-384-2996. Option 1 for billing, our hours of operation are Monday to Friday from 8:00 AM to 7:00 PM CST.

Have a lovely day!

Natera Billing Department.
Billing Call Center: 844-384-2996
PO Box 889023

REPLY
@carrieclark214

I had the Signatera test and I have Medicare. I haven’t paid any of it!

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I'm wondering if it only is used when there is documented spread. I can't think of any other reason that three (3) oncologists have refused to consider ordering it for me.

REPLY
@einnoc

After my Iowa City oncologist made the remark about how Medicare would never cover Signaterra for me. I have wondered, since then, if that was because the one seminal node biopsy removed during the lumpectomy did not show any spread. My original Illinois oncologist was completely opposed to ordering any expensive tests and another doctor on his team told me it was because "He doesn't want to get dinged by Medicare." Hence my story of his refusal to order an oncotype OR a ki67. I was so curious about this $20,000 figure he threw out during our brief meeting that I wrote to the company. Here is what the makers of Signaterra wrote me about the use of their test (whether covered or not.):
Topic: General Question.

Hello,

Thank you for contacting Natera,

thank you for the information provided, after reviewing your inquiry we would like to advise you about the cost for the Signatera test, the selfpay rate or prompt pay cash is $395.00 per test not using insurance, if you want to bill your insurance the amount billed would be $3920.00 per test and the total amount covered would depend on the insurance answer we will receive.

If you have any more questions, please feel free to call us back through this number: 844-384-2996. Option 1 for billing, our hours of operation are Monday to Friday from 8:00 AM to 7:00 PM CST.

Have a lovely day!

Natera Billing Department.
Billing Call Center: 844-384-2996
PO Box 889023

Jump to this post

Thank you for your perseverance! This is very important information.

REPLY

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.

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

REPLY

Carrie, I have begun to realize that the medicine of my youth (born in 1945) has changed substantially and today's medical mantra is YOYO: You're On Your Own.
I did not go to medical school, so I have to have a certain level of trust in those who did, but I no longer have the depth of trust I had before I turned 70, in the early days of treatment for whatever ailed me. I am old enough, keep in mind, to remember house calls! I am still finding it difficult to wrap my mind around all the things that were not done "according to Hoyle" by my very first Illinois oncologist. I feel grateful that my Texas oncologist seems to care if I live or die, and that is a step up from the guy who wouldn't order anything and only saw me twice in 8 months time.
I am not overly impressed by the cavalier attitude I have, so far, experienced in my 3-hour trips to the University of Iowa Hospitals and Clinics. That physician (oncologist) was my original "second opinion" doctor, and when everything went South with the Illinois physician, I returned to him for supervision while in the Midwest. But I have mentioned his remarks to me during the conversations we have had (and make no mistake---these were conversations, not examinations; he has not ever taken a look at "the girls" who brought all this sturm und drang on me by forming a tumor between 2018 (first biopsy) and 2021 (diagnosis of 11 mm. tumor). I try to "roll with the punches" and realize that doctors at a good institution see very, very sick people daily, and, to them, I am probably just an old woman who is annoyingly interested in being monitored for any recurrence of her small, found-early tumor. But I feel that I am "on my own" because, while my heart goes out to the many, many cancer patients who are battling this insidious disease, I have to try to keep myself alive and in relatively good spirits and health, and when you are battling a (potential) recurrence without the ability to take the pill that might help stave that off, and Type II diabetes, and osteoporosis (brought on by Anoxtrozole, I am convinced) and fibromyalgia, you view things through the prism of, "What can I do or say to best keep myself alive and relatively healthy?" The answer, as far as I can determine it, is to exercise Eternal Vigilance, but there seems to be a reluctance to waste any medical resources (or time, even) on someone in the twilight of their lives. If I were 40, I'd be worth ordering an oncotype for; since I'm almost 2x as old as that, just take a number and move along.
Except that I have, so far, refused to STfU and accept whatever level of care I am offered. I have asked for the best care and am willing to dig deep to pay for tests that might give me that elusive peace of mind that my surgeon thought the ki67 test might offer. (I still have not gotten any of the 3 oncologists who have been "my" doctor to order that one, intended to gauge the aggressiveness of the tumor, and I do think knowing that test's results would give me a leg up on feeling somewhat more comfortable going forward without taking the 5 years of Tamoxifen that the oncotype dictates must occur.
Anybody have any other tests I should know about? Anybody with staging less than 2B get their insurance to pay for the Signaterra test?

REPLY
In reply to @pixiepeace "Do not give up!!" + (show)
@pixiepeace

Do not give up!!

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Hi @pixiepeace, I like your username. Are you currently taking tamoxifen? How are you doing?

REPLY
@dick61

I am an 83-year-old male and had a mastectomy and proton radiation in the spring of 2021. Started Tamoxifen in June 2021. At first, I lost all interest in normally interesting activities. I also began having almost daily headaches that I suspected were at least partly caused by stress (e.g., would my cancer return with my CHEK2 gene haunting me). I had a major loss of libido and didn't care about much of anything. However, I was NOT depressed. No tearful episodes or sadness or any of the classical symptoms. Then, after a year, I decided to simplify my life by not having to finish every task on time or striving for immediate closure, etc. My headaches markedly decreased, and my libido returned over time. I am now once again very physically active but avoid the pressure of the demands of closure. Mylan brand tamoxifen prevents hot flashes, etc. Switch brands to experiment. I am glad that I didn't take an antidepressant. Google cognitive behavioral therapy and use those techniques. It helped me self-analyze. Bless you and good luck.

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I have had lumpectomy, surgery and radiation. My type of cancer is an aggressive type and my medical oncologist keeps saying to take Tamoxifen. I could not tolerate all other meds they tried for prevention. I am also 83 and wondering if I should take Tamoxifen, at my age I wonder if the side affects are worth it since I still have neuropathy in my feet, fingers and balance is not too good. Also have osteoporosis and started generic Fosamax which has its own side affects. Anyone else going through same?

REPLY

Other than to know that someone else is going through the same struggle with Tamoxifen, I don't think I can offer much help. I had a mastectomy, chemo and raidation. My cancer is HR+ HER 2 -. I too suffer from depression and anxiety when on Tamoxifen. I get so depressed on the full 20 mg dose and on 10 mg that my doctor lowered the dose to 5mg. Then slowly raised it up to 10mg/5mg alternating days. I can tolerate that. My oncologist says "Low dose is better than no dose."
I have heard that Effexor can help but for whatever reason my doctor hasn't brought it up.
I can appreciate what you are saying about not wanting to take an antidepressant for ten years.
It was good to know that you are out there struggling with the same symptoms I am from Tamoxifen.
Hang in there.

REPLY
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