Posted on: Jul 9, 2021 10:38AM
Posted on: Jul 9, 2021 10:38AM
In May 2021 I was diagnosed with DCIS & subsequently had a lumpectomy. In 2009 at age 52 a complete hysterectomy was performed because there was a 25% chance I had uterine cancer. Instead of being relieved, I was furious. A week after the hysterectomy I experienced the most traumatic event of my life: I felt that another woman had replaced me, my genitalia was shrunken and if I did not a solution to this, I would have killed myself. ERT saved my life. Because I no longer had a uterus I was told I could take ERT for the rest of my life. Due to the Estrogen receptive status of my small, & clear margined DCIS my surgeon told me to stop the ERT immediately, thankfully my gynecologist gave me a tapering plan. I have psoriatic arthritis, an autoimmune disease, and take biologic medication for it. I underwent two knee replacements due to the destruction of my joints. At this juncture I plan to refuse estrogen blocking drugs and plan to take the the smallest dose of ERT. I am a traumatized again and feel if I cannot continue using a small amount of ERT, I would rather die. I do not think doctors should be the gatekeepers to MY mental health. I view the proposed treatment will make me a eunuch. I believe that saving my breasts will kill who I am. I am angry, feel trapped and sad that I have to make this choice. I feel that cancer treatments offered to women is untenable for me. I do believe, if men had this disease, there would be alternative treatments. Men would not accept losing their vitality and sexuality so what should I? I don’t know why I am posting this because I don’t believe anyone can change my mind. I just want to share the psychological ramifications in the hopes that this will be addressed and doctors will treat patients as people, not just breastsLog in to post a reply
Jun 12, 2022 06:20PM mpetago wrote:
I just saw this thread after writing a post about wanting to try HRT for severe depression I have developed coinciding with onset of menopause. I was premenopausal at age 35 and highly ER+ so encouraged to have oophorectomy as part of treatment, but I refused. I just knew I would have a horrible response from super high to no estrogen and felt like enough things had been removed already. I did tamoxifen with lupron for five years, and while I did have some side effects, it was just hot flashes and weight gain, or so I thought.
Now I'm 54 and have gone naturally into menopause, or I'm very close, and in the most severe, suicidal depression I could imagine. In the last six months, I can now barely leave my house, and completely lethargic and empty. A good accomplishment for a day would be taking a shower, or eating. Not both. So a few months ago I just sort of 'broke' one day and had to be taken off work for a month. Started seeing a psychiatrist, and now I'm on the fourth meds combo she's tried, and feel pretty much the same. It finally occurred to me that this is probably due to the loss of estrogen, especially after a lifetime of living with very high estrogen. Started doing some research (Dr Bluming), and now I'm definitely going to try HRT. I've always had really difficult life circumstances, and plenty of reasons for depression, but I have never felt this way and could overcome the craziest things while keeping a positive attitude, no matter what. That has just completely vanished somehow, along with most of my personality.
I also thought that going into menopause naturally would be gradual, and therefore easier, and I can see now that I was mistaken about both. The estrogen plummet I suspect has caused this seems to line up with hormone labs I requested that showed a sharp drop in estrogen levels around the time I just mentally lost it. I was doing other labs for what appeared to be an autoimmune disease onset, along with ulcers, and just curious where I was at. Huge drop from last labs I had within the past year or so. Now I'm looking at so many things I had while on the tamoxifen like severe joint pain, bone pain, fatigue, and ostopenia that never really resolved but that I assumed were related to chemo. When I finished tamoxifen, I had an almost instant and massive improvement in how I felt. Lost weight effortlessly, and felt better than I ever have. And that continued until these past few years when periods became erratic. So I've decided to look for a doctor who will listen to me and be open to trying HRT. It feels to me like a matter of life and death. I read that women in the perimenopause / menopause age range have increased rates of suicide, and that makes a whole lot of sense to me now. I don't think survivorship issues have been looked at nearly enough, probably because there are so many survivors now than in the past, and we are so grateful to be alive that we accept whatever side effects we have as the price for that. And go out of our way to avoid anything that might bring cancer back. Yet here I am, a long-term ER+ stage III survivor figuring out how to get HRT because quality of life is THAT bad. And now I'm reading that HRT is contraindicated for breast cancer survivors based on one small and prematurely-closed study (HABITS)... I think we all have to let our oncologists and other doctors know that the side effects of estrogen blocking for some of us are maybe not worth the benefit, if there is one.
Jun 15, 2022 08:42PM - edited Jun 15, 2022 08:45PM by nopink2019
Jun 15, 2022 08:44PM - edited Jun 15, 2022 08:45PM by nopink2019
mpetago- your experience and research seems to indicate a severe reaction. You should bring this up to your MO. Or investigate a larger Cancer Center that has resources 4 mental health and coping withBC &QOL. I applaud you for pressing the issue to find a solution it works for you. Keep at it!