Anybody coping okay with hormone therapy?

[PattiFL]

I will begin hormone therapy in September after my radiation. My surgeon told me that there are 3 different estrogen blockers (I'm in the US) and that joint pain is often a side effect. He said that I should not be shy about telling my oncologist if the first one I try is causing problems.  Told me to find the one with the least amount of side effects and offered to intervene with the oncologist should I need support. I had a baseline bone density scan three weeks ago and don't you know that I have osteoporosis in my hips! So, I will be receiving 2 x yearly injections of Prolia for bone density because the estrogen blockers adversely impact BD. I feel like 2022 is the year my body said "to hell with ye" and fell apart.

[PattiFL]

Your words mirror my own thoughts. I have been healthy and fit (newly 57 years) and by chance, I found a lump on May 14. Fast forward to a diagnosis of IDC on June 6th and then testing and more testing to learn it's only stage 1 and surgery on July 6th.  I start radiation tomorrow and after that is completed I will begin a hormone blocker.  I still cannot wrap my head around the fact that the rest of my life will carry the shadow of cancer. I have so much uncertainty about my energy level and how my life might change. Oh, and I am having a thyroidectomy in October because a PET scan and ultrasound highlighted a suspicious nodule. I know that I will get through this.  I know my situation is the best that one could hope for but what will my life look like on the other side? Editing to add that I had a hysterectomy about 12 years ago and had been on hormone patches up until the end of May. Since I had to cease those immediately, the hot flashes/cold chills started within a week.  So, coping with cancer diagnosis while also adjusting to menopause...Lord help me.

[Kay0987]

I haven't had a sex drive since my early 40's so losing that won't do a bit to me. Still quite active though because I love my partner and emotionally I do like being physically with him so I'm hoping I can still have sex comfortably after I start. Doing vaginal suppositories a few times a week so I'm hoping that keeps everything healthy enough. But it's so good to hear you're having a normal life even if your sex life isn't what it used to be. I know a lot of us women seem to really struggle with being menopausal but I'm trying to hold onto the fact that it's actually as natural as puberty. Our estrogen is supposed to tank and that's way it's been for the vast majority of our human history yet womenkind coped and managed to live their lives, many have long ones (although not as common as now of course). Even men lose their testosterone. Not like us where we go over a cliff, but it diminishes significantly as they get older. But I do hope you find a way to maybe find some desire again if that's truly what you want but if you can't that you have peace with it. It bothers me, too, but I just found a way around it (bought a vibrator so I didn't feel so resentful anymore).

[louby_lou69]

I hope your surgery went well and you're recovering.

Ive been taking Anastrozole since the 1st April, so still early days but I'm managing ok on them. I do get hot flushes but I was getting them before, I'm taking Fluoextine which are supposed to help but the only way I would know is if I stopped taking them I suppose. I'm 53.

I feel quite stiff in a morning, particularly my ankles but once I get moving I'm fine. I'm back in the gym and have lost 12lb with healthy eating, it's slow to come off but going in the right direction- I have another half a stone to lose then I'll be back to pre chemo weight.

My only other side effect is lack of sex drive - this could be caused by the Fluoextine though.I feel literally nothing and it makes me so sad. I totally love my partner and am devastated that that part of my life isn't what it was. He doesn't know this though. I still enjoy the intimacy etc but there is no desire which is rubbish. 

My experience though is very positive and I hope it continues.

[AnnieV]

Yes I have switched to Corsidol and it’s really helping! Will give the salt water wash a try too xx

[tappin]

Corsidol toothpaste and mouthwash will help with gum problems. I woke up a few weeks ago with blood around my mouth and horrible clots in my mouth where my gums had bled in the night! The dentist suggested salt water rinses too as well as the Corsidol.

[Kay0987]

It reads like it and that's pretty awesome. You know one thing my pharmacist suggested to do with chemo is salt water rinses. I don't know if that would help with inflamed guns but it decreases the bacteria in your mouth so I bet it would. Anyway I thought I'd mention it since it's not a medication and it's easy to do.

[AnnieV]

@Kay0987 

thank you for agreeing that weight loss can sometimes happen on tamoxifen. I have mentioned it to a couple of GPs and they either don’t know or don’t want to know! You end up doubting yourself!

My appetite is reduced & I don’t seem to feel hunger so I am probably eating less although I always try to eat x3 a day.

I have recently discovered I have periodontitis & for a while my gums have been inflamed (which could also be influenced by tamoxifen) so eating hasn’t been very appealing!

Overall I think I have got off lightly so far on hormone therapy x

[Kay0987]

Your weight loss is an unusual symptom but I've read it does sometimes happen. Is your appetite just gone and you're not eating as much? But it sounds like you feel okay and that's a huge plus!

[AnnieV]

Hi @Kay0987 

Just read your post. I hope you are recovering well from your mastectomy. I have been on tamoxifen for almost a year and like you I am pre menopausal. (Age 45 at diagnosis last summer).

I haven’t experienced the side effects I was expecting. I still have periods (precisely regular now unlike before treatment), I have had no hot flushes (in fact I feel the cold a lot more), no probs with sex drive & no weight gain. In fact I have lost 18lbs & not sure why. (My BMI is  now 19.4 so a bit concerning). 

So for the most part these are side effects I can live with! I think my main problem has been tiredness, but I am also iron deficient so it may not all be down to the tamoxifen.

I am considering a break from tamoxifen to see if it improves my appetite & weight but I am concerned that if I stop it then start it again, I will get new side effects which I hadn’t bargained for! Don’t know if I want to disrupt the status quo!

Best wishes for your recovery & treatment xx

[ScarletBea]

I'm on my 6th year of hormone therapy too, starting with 5 years tamoxifen and now taking letrozole for next 5 years.

Sometimes you forget you're taking it, other times it's hard and you have to keep in mind why you're doing it... it's not exactly a walk in the park, but it hasn't stopped me living my life in a happy way 🙂

Good luck!

[tappin]

I shall be having a blood test next week (at MY request) to check my hormone levels, then a phone appt with the breast surgeon the following week to discuss what I do 'going forward'!  if I can maybe try 2 months on and 2-4 weeks off, I will try that, to see if it mitigates the joint pains. I have never suffered with my joints before and do not want to be reduced to the movements of a 95 yr at 77!  I have my first mammogram-1 year after diagnosis- on September 1st, so we'll see what happens then. In the meantime, lots of ME-time for all! 

[Kay0987]

Thank you for letting me know. You read such terrible things about it and my oncologist and I want 10 years with it so I'm hoping I can do it while maintaining a good standard of life. I wish you continued luck.

[Lizaki]

Hi

I was diagnosed with breast cancer six years ago. I was taking letrozole and am now on Tomoxiphen. I had some hot flushes at the beginning but that is all. I know I have been lucky with that but i haven't really had any side effects from the hormone treatments.

[tappin]

I am so sorry to hear that others are so dismissive of your concerns and fears! I have told only my daughter, son, husband and one sister-the other one will say it's my fault for taking HRT so I don't want her 'advice'!  I was lucky(!) at 77 that mine was caught so early, and was small and hadn't spread, but that does not make any easier to accept. 

I am looking after myself, beauty routine, and facial treatments-a bit of pampering for me! I don't have to hold down a job, so I feel sorry for those that do. I am just taking a break from the hormone 'therapy' (torture)- as my knees and hips were so stiff I could barely walk a few yards!

Look after yourself, and think just how brave and strong we women are!

[Kay0987]

Thanks for understanding. I will be having a double mastectomy early next week and lately whenever I express fear my immediate family's reaction is to say, "It'll soon be over". And I'm like. no, it's just beginning. And they hate to hear that. They want it over, I want it over, but what no one seems to get is that I don't think it will ever really be over. I will always now be a person whose body can make cancer and that changes everything forever regardless of the amount of treatment I will undergo. Hell even last week I was discussing some changes I was going to make with a friend and she got kind of irritated with me asking me when it was going to stop. When was I going to stop being afraid? In context, I've had a fear of cancer and health anxiety for almost a decade now since my mother has died so she's had to listen to my fears for awhile. But it sounded almost like I was being blamed. Like I caused my cancer through fear although I had been doing pretty good for the last couple of years. This diagnosis came out of the blue actually. Anyway, it hurt my feelings. Of course I'm going to reevaluate my life, of course everything will change including me as a person, and I'm sorry but will probably change at least a little for anyone who loves me. It's the way it works. Anyway, thanks for listening and letting me know that at least there is someone in the world that hormone therapy hasn't interfered all that much with their life.

[Long Shanks]

That is good. It is so hard to put things on the side and not to react - when you just think - what next - where am I going - what will be left of me. And the world around you - unless you have a close friend/family member who has been through it - doesn't sense or see your concern/fear of the 'what is this going to do to me'? And, personally, the impact on my previously strong, fit, healthy body - no health issues or anything - then the hits of treatments and the exhaustion of that along with the whole shadow of cancer and all that goes with it - is not visible. Most people have no concept or understanding of treatment progression and the damage to you physically, never mind the mental strain, does to you. I have found that very hard to deal with - especially the flippancy of comments - and the negativity. It is harder to maintain positivity in the face of cancer and all that comes with it than negativity. Sometimes hard as it is - you simply have to have faith in yourself and turn off - and as you say - just get on with it. However, just a bit of recognition of the struggle and difficulties you go through and experience - would be nice - wouldn't it? And there is hope, despite the wobbles. That glass has to be kept topped up - not half emptied! 

[Kay0987]

Thank you. It does. You read so many things to prepare yourself and a lot of it is negative which makes sense. People are going to post negative reactions in order to get feedback to help themselves. Probably those with the no reactions just go on with life. I just wanted to make sure some of them were out there though so I know there's hope.

[Long Shanks]

Hello! I am ten months into tablet oestrogen reducing treatment. I have had no noticeable side effects. Stiffness in the joints when tired at the end of a long day - however that could be a side effect of the immunotherapy regime which I completed about six weeks ago. I had the odd hot to cold temperature change - but with the weather being what it is (up and down) at the moment - this might be attributable to that as much as the hormone reducer. Inward similarly terrified at the list of side effects re the hormone reducer. But, touch wood, so far, for me, negligible side-effects. Hope this helps.

[Kay0987]

I'm at the beginning of my breast cancer diagnosis and will have a double mastectomy next week. No idea what treatment will be after that but I know at the very least I'm on hormone therapy. I'm pre-menopausal but probably within three years of hitting menopause. Is anyone out there handling hormone therapy okay? It seems that I'm reading so many people struggling with it and it scares me. Is there anyone that is coping fine with it?