Women on Ovarian Suppression + Hormonal Therapy Unite!
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Wishing you luck! My husband just went through heart issues last year (at the same time as my recurrence, fun!). He had palpitations, tachycardia, and eventually started going into atrial fibrillation. It was terrifying for over six months. He ended up getting something called a cardiac ablation which sounded really scary, but ended up being a relatively easy procedure with a quick recovery. He is doing really well now.
Please keep us updated on how you're doing!
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hi ladies. Has anyone had issues with elevated GGT and/ or low WBC was told it was likely due to Anastrozole? What was the resolution? Thanks!
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I'm new to this thread & I'm hoping you lovely ladies can help clarify some things for me. I just started on Tamoxifen in December. My MO mentioned that I should also look at doing either ovary suppression or ovary removal. I am probably only a couple years away from natural menopause. How/why/when is the determination made to go ahead with one of these treatments? As with everything else, there is so much conflicting information on both (pros vs cons) I have not been given any genetics testing so I don't know if I'm at a greater risk for ovarian cancer.
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Hi Willcare!
Your MO may not be worried about ovarian cancer. He/she might just be encouraging you to adopt a more effective variant of hormonal therapy. Your cancer was ER+, so you need to reduce the amount of estrogen in your body. (Tamoxifen and aromatase inhibitors [AIs] both do that but through different mechanisms.) The SOFT study suggested that adding ovarian suppression (OS) to Tamoxifen was better than Tamoxifen alone for pre-menopausal women. Also, ovarian suppression can allow pre-menopausal women (like me) to take an AI, which is more effective yet. I started OS + AI when I was 47, just four years before the average age of menopause (51). I took an OS vacation for a month last year, but I was still pre-menopausal so here I am, age 52, and still doing OS + AI. Good luck!
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Thanks for your reply. Did your MO discuss ovary removal with you? Is there a reason why you chose suppression over removal?
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I first talked about ovary removal with my OB/GYN. He said it would be up to me, and then he retired. I got a new OB/GYN, but she hasn't pushed ovary removal. Apparently, women who keep their ovaries live longer than those who have them removed. She prefers to remove ovaries that have problems, like lots of painful cysts. I don't really care one way or another. I kept my port from chemo, and I have to get it flushed every couple of months. So, I get my port flushed at the same time that I get my OS (Zoladex) shot. Also, I really don't have debilitating side-effects from OS + Aromasin, so I'm good.
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My mother has been on Tamoxifen for 8 months. I began to notice she was very spacy and not herself. She was not laughing, smiling and was always fatigued. In November, she had an x-ray to her spine and got a false positive that her cancer had come back to her spine. It was false. After that, it caused a downward spiral to her depression, as we had to wait 3 weeks before an MRI. She attempted to take her life a few weeks ago. Prior to this, I asked several times about the side effects she was having and it was dismissed. When we did get an MRI, it showed that there was some enhancement causing my mom then to go for a pelvic ultrasound showing "polyp-like echoes are noted within the endometrium consistent with Tamoxifen use."
I am new to this site. My mother is 66 years old. She had a bilateral mastectomy after it was discovered she had Stage I cancer in both breasts. Since she stopped taking the Tamoxifen for the past few weeks (a break), she is laughing and back to her old self.
I am at a loss as to what to do. I rather have my mom stay off of this drug. We almost lost her and it appears that the side effects greatly outweigh the benefits. Any suggestions?
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ahearn2002,
This thread is about OS + Hormonal Therapy. Your Mom is just doing hormonal therapy; you might want to check out some threads that focus on those who are receiving Tamoxifen only. (You can search for those threads using the Search function on the left.) I will say that both Tamoxifen and the AIs can cause mood swings and depression. When the mood swings hit me, my MO prescribed Celexa, and I've been fine ever since. Only your Mom can decide whether she wants to take Tamoxifen. If she decides to take it again and has similar side effects, she needs to tell her doctors. Oftentimes, an antidepressant will do the trick. If she doesn't want to take Tamoxifen, that's fine. If she doesn't want to take an antidepressant, that fine. As long as she's been informed of the risks of not taking it, choosing not to take it is a valid choice.
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ahearn2002, I'm so sorry about what your mom is going through. As ElaineTherese mentioned, there are lots of good threads here about tamoxifen where you should be able to get some good advice. I'd start with this one: https://community.breastcancer.org/forum/78/topics/696015?page=1008
Willcare, there are significant downsides to ovarian suppression (higher risk of heart disease, stroke, Alzheimer's disease, osteoporosis, etc.) and the SOFT/TEXT studies showed that there is minimal benefit to women at low risk of recurrence, so the guidelines are to recommend it only to premenopausal women who are at high-risk for progression/recurrence. That's usually women under 40 and those with high-grade, aggressive cancers (or a higher Oncotype score). From your profile and what you posted, that doesn't sound like you. I would ask your MO why they are suggesting OS.
Here's the 2019 SOFT/TEXT follow-up, with a focus on distant recurrence. You might want to talk to your MO about it: https://ascopubs.org/doi/10.1200/JCO.18.01967
As for ovarian suppression vs removal, from my understanding, the ovaries serve a protective health function even after menopause. So I prefer to keep them so that once I'm done with my years of OS, I'll still benefit from that. Also, removal is irreversible and I want the option to stop OS if it becomes intolerable or if my MO decides it's no longer necessary for my situation.
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Hi Ladies - I'm wondering if any of you could offer insight on OS + AI with regards to the need for contraception. I've been getting monthly Lupron injections for 7 months and Anastrozole for 4 months. I'm 41, and haven't had a period in over a year thanks to chemo. My estradiol was strongly post-menopausal when my MO tested it in October, but my LH and FSH weren't quite at post-menopausal levels at that time. Is it realistic to assume that I don't need to be concerned about birth control at this point? Or do I need to get my levels tested again to be sure? Thanks!
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Hello all
Re people discussing side effects and what not. I read somewhere that sertaline which is a ssri anti depressant can help with hot flushes im on citalopram another sssri anti depressant and tbh i never had hot fkushes people talk sbiuy had fww bight swests and like someome else breaks out i never used too as teen maybe one or two spots buy now yeah xxxx
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Hi, I just found out yesterday that I’m a candidate for this type of therapy. I didn’t even know it existed. Did all this research and prepared myself for the tamoxifen, to be told we may go this route. Kind of nervous about the mood swings. I’m already experiencing so many different emotions and trying to learn how to manage those and then to throw this on top of it scares the life out of me.
I have a month before I possibly get my first treatment, want to get radiation out of the way first. 😊
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hi
Recurrence into my lymph nodes, estrogen positive her negative, Onco wants me to take tamoxifen with Lupron injections. Am going for second opinion next week.
Advice on what to expect and what I should ask doctor.Thanks
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Dear DottyParker,
Welcome to the BCO community. We are so glad that you reached out to our members for their support and suggestions. While you are waiting for others to jump in with some thoughts you might want to take a look at this page with links of articles and stories about Lupron. We are here if you need any help navigating your way around the discussion boards.
The Mods
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Hi Dotty, so sorry to hear about your recurrence. Have you already been taking tamoxifen and are now adding Lupron, or are you going to be starting both for the first time?
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I'm due for my next injection and zometa infusion in two weeks. The way things are looking in Boston, that's not going to happen and there's no way I would want to risk carrying anything into the chemo unit even if they could see me. Anybody else looking at treatment disruption or figuring out ways to work around it?
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I'm due for my next shot on the 25th. I'm going to contact my MO and see what she advises.
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Yeah. My MO left the practice effective last week. Awesome timing.
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I've been wondering the same as I am scheduled for Zoladex next week. Curious what everyone's teams will advise.
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I came on here for the same reason to see what others are doing about the monthly injection. I have an appt. on March 26 for my zoladex stabbing, but mine is not done in the cancer center at the hospital, but at a regular medical clinic near where I live. But I still feel a little nervous about it. I don't like the idea of going to a medical clinic during this time at all. I would feel worse about going into the cancer center in case I was a danger to others (without any symptoms) like someone mentioned above, so at least it's a regular medical clinic, but then I fear for myself being exposed also. They really need to test everyone because some people don't have symptoms or they are delayed and you can still be contagious. I really just want to hide in my apartment and not go anywhere except for some groceries. I already worked at home, so I can pretty much lockdown here and I might as well, just to take one more person OUT of the mass of humanity in public.
I also have a dr. appt. next month that was set up just 2 days ago for 4/23 to see an endocrinologist as I have a rather large nodule on my thyroid. I already had an ultrasound and it seems to be a fluid-filled cyst but should be checked by an endocrinologist. Their office said he could do a biopsy right there in his office to check it, but I would have to pay $200 for it. Or I can wait and have it free at the hospital (I'm in Canada). I think I will just pay as going to the hospital these days will definitely not be a good idea and anything non-urgent is being delayed indefinitely. I hate that I have this "other thing" now besides the anti-hormone drugs at this time with all that is going on. Who knows what it will be like in a month. I can only hope it will be better, but unless we truly lockdown like they did in China, I'm afraid it will be worse.
I also have posterior vitreous detachment happening to my right eye and it is causing floaters and flashes, so I am lucky I saw an eye dr. for that about 10 days ago and she checked my retina and it is ok. But there is still a small risk of it tearing during this. I was upset as I read that the aromatase inhibitors can increase the risk of this happening (due to the depletion of estrogen). Aging and being myopic also increases the risk, but I'm 54 and I feel like this is usually an older person's condition. Although I've only been on these anti-hormone drugs since July though, so not sure if it could affect it that fast.
Has anyone else on here had that happen to their eyes?
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When I was doing ovarian suppression monthly shots, I wanted to delay one time because of a surgery and I was told from the Doctor and a nurse than I can delay for up to 3 days but not any longer. Please Ladies make sure to follow the doctor orders because skipping may create other problems. This is not an aspirin or multivitamin. There is a reason you get these injections, to tell ovaries not to produce the hormone that feeds cancer cells.
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Can confirm that shot delays cause issues. I just switched oncologists because my last one's office dropped the ball getting the auth with my new insurance in January and made me wait a week to get the shot (and then were trying to delay it another couple of weeks!). Even with only a week delay, I ended up getting my period again. The physical and emotional rollercoaster is real!
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Well, my downstairs neighbor has symptoms and we've had contact. I was just told by my oncologist's office that all they can do is push my appointment out by two weeks because there's no protocol for giving it at home. Of course as it spreads through my house, that two weeks will become 4, then 6... So I suspect I will be off hormonal therapy for a good while. A few weeks ago I took a short, oncologist advised, break from anastrozole to see if that was the reason for increased asthma symptoms. In less than a week I had back pain through the roof and made the decision to restart. Had some spotting. So I suspect dropping hormone treatment entirely will not be the most fun experience. But as of right now there's no alternate plan for people who can't come in.
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I'm sorry to hear that. This is such a stressful time! Hoping you stay well.
Could your MO put you on tamoxifen while you're off the ovarian suppression?
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In theory she might try to if it ends up being too many delays, but I don't know. My MO just left, so I'm being shifted over to someone else but have never met her. Most likely they'll just let it go though. I'm not super worried about cancer activity- more about the major ups and downs in hormones and the physical and emotional side effects of that while life already feels out of control. And I absolutely without question don't want to go near that unit if there's the slightest chance I could be carrying something- I was already anxious about that. I've just been annoyed for a while now that they can only do the injection at the hospital even though people give themselves other injections all the time. This just highlights some of the issues in having it set up that way.
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So on another thread on here I saw people talking about a possible correlation between lower estrogen and a bad reaction to COVID-19. So of course, I had to google it and found a bunch of articles and a research paper. The study was using SARS and not COVID-19 as it was from 2017, but they are very similar and both apparently affect men worse than women. So adding that to my concern with going to a medical clinic for the zoladex shot, I emailed my oncologist and asked him about it and also about my concern with going to the clinic to see what he recommended to do.
So his response was that no one knows (about the estrogen issue), but that going to the clinic could increase my chance of exposure so he said I shouldn't go. He said to postpone it for 8 weeks and stop the anastrozole of course too. I think that is better for everyone too. Just to limit contact in general. I was kind of surprised by his response, and it made me actually feel more worried about how it is going with controlling the virus.
I just wanted to post what I was doing and am curious if any of your oncologists suggested the same (to stop if for now). I really hope my period does not come back as I am almost 54 now and I think that it seems about time for menopause to happen and I won't have to get zoladex stabbings anymore. the reason I am not taking tamoxifen is because I have a history of endometriosis so higher estrogen in other parts of my body is not good.
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I had not heard of the possible link between lower estrogen and coronavirus risk. Thanks for sharing. I'll ask my oncologist about it.
As of now, I'm scheduled to go in for my shot on the 26th. I'm at Cedars Sinai in LA. They cancelled some other tests that I was going to do, but the shot is still on.
On a different note, I am switching to Lupron from Zoladex. I have a new MO who I am really impressed with. She had so many ideas for dealing with side effects (fatigue, depression, etc) and being proactive with treatment. One of her suggestions is to switch me to Lupron, since some women do better on it. That's the first anyone told me about it, so I'm trying it.
Later, after we see how I do with the switch, she may also switch me from exemestane to another AI. She also mentioned working with a psychiatrist to start me on testosterone. Apparently it can really help with energy and mood. She's also going to use the Foundation One test to test my original tumor. It's a test that is usually limited to later stage cancer, but it's starting to be used in early stages to see if other drug treatments might be warranted. Those are just a few things she mentioned. For the first time, I feel like I have someone who is really going to work with me holistically—looking at everything we can do to prevent cancer recurrence, but also working on my overall health and well-being. I'm really excited and will post what I learn from her here. She also does a lot of research, so she is an incredible fount of knowledge.
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This is one of the articles and there is a link to the study also: https://www.the-scientist.com/news-opinion/why-some-covid-19-cases-are-worse-than-others-67160
There is a link under the COVID-19 thread on here where someone posted about it and that is how I heard about it as I hadn't seen any articles before that.
But my oncologist seemed to base stopping the meds from the fact that I have to go into a medical clinic for the shot. He just said "no one really knows" about the correlation of estrogen and COVID-19. He didn't discount it though either.
I actually felt joyous after he said not to go. I wanted to do a dance of joy! It will be interesting to see how I feel these next 8 weeks off those drugs. I've had some issues and I was not totally sure if they were caused by them or not. But for sure they are worse right after I get the shot. I also sometimes have worried about whether or not my ovaries were suppressed at towards the end of the month and yet they never test my hormones. I heard that taking an AI when your estrogen is really low is not a good thing.
That's great that you have someone to work with you holistically. I had a holistic dr. back when I lived in Boulder, CO, but I ended up moving to Canada and never found one like that again.
I'm curious to see what difference you will experience with Lupron vs. Zoladex.
Be safe when you go to your appointment. I would wear a mask if you have access to one. You just can't be too cautious with this thing!
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Are testosterone safe for breast cancer ER+? Mayo Clinic and some other websites don't recommend/know. I am curious since I have removed the ovaries and I am having hard time building muscle.
Be safe at your appointment. I wear gloves
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My MO said she's talked with several psychiatrists who specialize in oncology patients and they believe it is safe. It's probably going to be a bit before I follow up on this specifically but I'll post here when I learn more.
But I did find this article on its use to treat menopausal symptoms in breast cancer survivors: https://www.ascopost.com/issues/october-15-2014/testosteroneanastrozole-implants-relieve-menopausal-symptoms-in-breast-cancer-survivors/
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