I’m right there with you. I was on tamoxifen for 5 years for prevention due to an abnormal biopsy. Was 40 when I started. Had a few side effects during the time I was taking it but all totally manageable and overall felt pretty good. I took my last dose in July 2016, then developed a new large fibroid (I had never had any problem with these before) which started to bleed profusely and ended up with a hysterectomy in November 2016. Then had 2 years of depression (also totally new for me). Crying for no reason, no energy, stopped finding joy in things I did before, no concentration/mental sluggishness. I have just now started to feel like myself again but now starting with frequent hot flashes. I think my body was just really screwed up after coming off the tamoxifen. I actually feel much better mentally now that I think my body is doing it’s normal thing and I am now moving into a true menopause with natural hormone changes. I think I’ve been “withdrawing” from that darn tamoxifen this whole time.
I am wondering the exact same thing. 74 years old and my oncologist 'almost' promised me she would take me off it. My five years is up tomorrow and I would like to know about my returning hair, relief from this ongoing constipation, as well as other things. who can we ask??
i am 5 years out and my oncologist has told me she will probably take me off of tamoxifen right away. Will things go back to normal afterwards?? --such as hair , skin, no constipation, sleep habits, and bone pain??
Why did you come off after 9 years ? - I've done 6 and ready to come off but my oncologist suggests 10 now. But having endometria issues.
ME TOO! = Just completed 6 years, Oncologist suggesting 10. Don't hink I can do it....
Hi Cindy D, thanks for sharing!! - Just curious why you had the hystectomy, oopherectomy and salpingo? Where you having issues? - I have been on Tamoxifen for 6 years and ready to come off!! - Of course I have many side affects (hot flashes, leg aches, bone aches, confusion, blurry vision but I just deal with it) My main concern is the endometrial uterine lining keeps getting too thick. I just had a D & C in December 2017, now it's thick again! - My Gyno says it's from the Tamoxifen of course. She did a biopsy to make sure nothing had changed with the cells. (2 weeks before resutls) Either way she's suggesting a hystectomy, oopherectomy and salpingo. so I'm curious if you had this dues to complications with tamoxifen too?
Thanks & Blessings
Very sorry to hear this, Oreolover.
You say you've been on Tamoxifen for 3 years. Do you have review sessions with an oncologist and/or your GP? You need to speak to a specialist about coming off the drug, if that is what you want to do. You need specialised advice; I'm afraid we couldn't give that. You might find it helpful to phone the specialised nurses at Breast Cancer Care on 0808 800 6000, or Macmillan Cancer Support on 0808 808 0000.
Have you written up some notes about your side effects? You might find it helpful to do that so you can take some information along to the oncologist/GP to aid discussion and for them to add to your health record.
I do hope you get the help you need soon.
It sounds as though you have made your decision and that your Mum supports you in it, so that's a really good start. I'm really glad your cat's supporting you too! You're right, they are very intuitive animals. Mine are a great comfort. I sometimes wake up in the small hours, when it's dark, feeling petrified and unable to get back to sleep. One of my boys (both neutered toms) is usually lying beside me. Without my saying anything he just starts to pur, and keeps it up for a whole hour or more. By 6.30 am I usually have two very upright furry statues sitting one on either side of me, staring at me very pointedly and purring politely in unison.
As for hormone therapy, I am contemplating giving up on it myself, and have an appointment tomorrow to see clinicians at the Breast Clinic. Letrozole caused a rash after 3 weeks, so the oncologist prescribed Aastrozole. After 9 1/2 weeks of Anasty I had gradually developed debilating effects which I'm pretty sure are a consequnce of oestrogen depletion, so I'm reluctant to try Exemestane as it's likely to prompt the same. I stopped Anastrozole 3 weeks ago and am still not back to my normal self. Although it acts differently, Tamoxifen appears to prompt very similar side effects to the AIs, whilst risking some very nasty possible long-term effects as well. I am considering refusing it.
Quality of life is so important. None of us should feel we have been forced into a treatment that has, in itself, made us ill. It comes down to deciding which horrors we are prepared to trade for which other horrors.
I do hope that you can become pain free soon, and that your work (and your cat) will lift your spirits.
All the best
It will be difficult for anyone on this forum to give you really clear advice, as your case is specific to you and needs medical input.
You make it clear you are in agony on Tamoxifen, and have been for some time. This indicates you need specialised advice from your Oncologist and, preferably, a Breast Care Nurse as well. You could ask them if it's feasible to take a break from the drug to re-establish your baseline of health issues, so you can then have further discussions as to what might help you most.
Stats are no more than a very general guide. (I'm a former maths teacher and taught stats along with other areas of maths.) Stats results are based on trials of 100 women and no-one can say which individuals they will apply to and which will be the exceptions. Decisions whether or not to take a treatment need to be looked at holistically.
What would be of greater help to you would be to arrange to see your Oncologist again, and to take along a breakdown of your medical history, including your depressive illness and other significant health issues you are having to juggle with cancer. (How long has your depression lasted? Are you on any medications for it which need taking into account?)
It could also help for you to list all the aspects of your life which make life worthwhile, and which you feel are being damaged by your present treatment.
On discussing all your health issues with him/her, you could ask them to run through all the known adverse effects of Tamoxifen and the other endocrine therapies, and relate these to your existing health issues. It could be helpful to discuss how each drug available to you might make your current health problems worse.
Try being frank with your Oncologist and give him/her a chance of understanding where you are.
Make a fuss of your cat and give him/her a chance of giving you love and attention back. I'm a great believer in the support and understanding of cats, and talk to mine a great deal! It's surprising what they understand and how supportive they can be.
It's sometimes tempting to want other people to make our decisions for us, but ultimately we have to decide for oursleves what we can cope with and what we can't.
All the best
You are certainly not alone.
Have you been assigned a Breast Care Nurse? You might find it helpful to phone her and have a discussion about your side effects, your anxieties and your problems with quality of life. She should be able to direct you to someone appropriate within the hospital for further advice and support. You could also phone the specialised nurses on the Breast Cancer Care line at 0808 800 6000; I have found them very helpful.
It can happen that oncologists are sometimes slow to understand the effects of oestrgoen depletion on your general health and daily life, especially if you are on your own and have to be self-reliant. There seems to be a general assumption that everyone has family who can care for them, when the reality is quite different.
You might find it helpful to write down a few notes about your present side effects and how they obstruct your daily life, referring also to your personal circumstances and your need to manage everyday practical household matters as well as your own care. You could include information about relevant aspects of your medical history. You could request an appointment to see your oncologist and/or your BCN to discuss the problems you've outlined, prividing them with a copy of your notes for your medical file. I have done this and have found it helps to get the message across.
Qualilty of life is the most important thing. You need to find the right answer for you that will allow you to cope, and to do that you need to have your clinicians on your side. Do talk to them and get their support for whatever you decide to do.
All the best
This is for all my sisters having new symptoms after coming off Tamoxafen,
I just started on Tamoxafen. I am also a Neurologist, but not an oncologist! Tamoxafen helps reduce breast cancer recurrence by blocking estrogen binding in the breasts. In other parts of the body, it acts like estrogen. I know it helps build bones, and works like estrogen in the pelvis, after discussing symptoms with gynecologist.
The headaches he’s and dizziness sound like symptoms of estrogen withdrawal- similar to what happens in menopause. This can cause hot flashes, insomnia, irritability, migraine, anxiety, depression, etc. If side-effects are bad, it is a good idea to discuss gradual tapering of Tamoxafen with your doctor. Everyone is different, but the body adjusts better to gradual changes.
Another possibility is that your symptoms are due to Vitamin D deficiency. To the body, Vitamin D has a similar structure to estrogen. When you stop Tamoxafen, you stop the estrogen effects it had on some parts of thebody. If your Vitamin d level is low, supplementing Vitamin D3 May help reduce your symptoms. This should be supervised by a physician, as too much Vitamin D can also cause problems.
I hope this helps! You are all helping me feel less guilty for how tired and listless I am! Blessings to all of you! Braindoc
First of all, welcome to the forum. The people on this site are pretty amazing and loving. Great support.
When I began the Tamoxifen I was so terrified of the cancer spreading or coming back, so I bit the bullet and took it. The side effects were bothersome, but I told myself.. you have lots to lose If you don't. My cancer was fast spreading kind, and I had my only child, and she was 13. I am single parent, and looking into her heartbroken terrified eyes told me I needed to do the tamoxifen, whether I liked it or not.
Am happy i made that choice, because am in remission and it has been almost 10 years .
I am saying, do what you think is right for you. There is hope ..and come back to the forum often , if you are able to. So many inspiring stories, and encouragement.
I hope I helped you , even a little bit. My thoughts and prayers are with you.
Stay strong and take good care of you.
P.S. I have a few posts on this forum explaining what my journey was like..
if you wish , look me up Silverraynefox
With sincere words of healing for you.. HUGE HUGS to You as well..