Freaky low mood, inability to feel pleasure etc. - letrozole or PTSD

Going through breast cancer treatment Hormone therapy
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Hello,

I’m just wondering if anybody else has experienced this, because according to my oncologist it’s “a thing”.

I’ve had letrozole since October. I’m 51 and before treatment, was not menopausal and had experienced no perimenopausal symptoms whatsoever. I have a metastatic disease which initially had a pretty poor prognosis but that seems, for the time being, to be under control. The nurse thinks the symptoms I’ve been having might be PTSD, but the oncologist thinks they might be side effects of the letrozole.

Anyway, since October, whenever I’m supposed to be doing anything enjoyable or pleasurable I feel an overwhelming sense of distaste and disgust. It’s very confusing (the only way I can describe it is to say that if you’ve ever seen A Clockwork Orange, it seems to have a similar - though slightly less dramatic - to the effect the Ludovico Treatment has on the protagonist Alex). I’ve lost my sense of humour, and I don’t feel any sense of satisfaction on accomplishing things anymore. Christmas was horrible. Everybody was annoyed that I couldn’t “snap out of it” and I just numb; when I did anything to relieve the numbness, I felt worse.

One aspect of this is a strong sense of disgust when I think about food or anything else that ought to be physically enjoyable. I also have a kind of physical dissociation - when I look in the mirror, I feel like I’m looking at a stranger, and I don’t like the look of them.

The only thing that does relieve this feeling is absolutely relentless exercising and borderline painful/extreme physical activity - yesterday I walked and ran about eight miles over a boggy moor in the freezing cold with wet feet and that kept it at bay until I got home. A day’s hard physical work in the garden will also work, though this causes joint pain and tendonitis for the following few days.

The oncologist thinks it’s an inverse mood reaction and that it’s due to serotonin depletion, caused by the letrozole. I also know, however, that trauma can give people anhedonia, body dysmorphia, etc. But I want to know if anybody else has had these kinds of experience and whether they have a name? Or is it just that I’m strange?

Alternatively, can anybody else make sense of it?

Thank you in advance!

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Id say counselling is probably a good route to take given what you are going through. I’m guessing that letrazole instead of tamoxifen, despite being premenopausal, would be maybe as having ovarian supression? If so, on top of everything, you are now menopausal in a very sudden and stark way after never having been so, which must be hard to take. Its probably a mix of both menopause and PTSD causing this. Counselling may help the PTSD, as you have found, exercise helps the other. I hope you find a way to navigate it, it sounds miserable, but is totally understandable given the circumstances.

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I am on a similar regime as you, although I am 69 now, diagnosed with primary bc in 2022 but not diagnosed with metastatic disease so far.

I feel dried out by letrozole and use hyalofemme on the few times I try and give my Fanny some plumping up. Ahead of some rumpy pumpy maybe?..,

Unfortunately I have a husband who is very depressed and believes the water is poisoned among other delusions so I don’t feel sex is on the menu chez Seagulls.

It’s really not surprising we are likely to have freaky low moods. I also have problems with my digestive system.

Half the time I can only produce tiny lumps of poo but every time I go to the loo I produce some shit. Then about once every four days I will feel an urgent need to have a poo and lots will come out.

On two occasions I have felt an urgent need to go while walking with the dog and once I shat myself. Luckily only me and our dog knew and I was close to home so I could get there, take off affected clothing, scrape it and stick it in the washing machine.

What I am trying to say is live the best life you can and remember no one else will notice as they will be dealing with their own crises. I am writing this on the toilet for obvious reasons…

Seagulls

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It’s a totally confusing situation. I was very fit before I got diagnosed and I’ve suddenly been plunged into feeling as if I have the body of a much older person. Ageing is supposed to happen gradually, and when it happens suddenly, you feel robbed. I’d just assumed before that if any glitches did come up in the future HRT would fix them. I never expected this.

It makes sense, psychologically, to feel ill and then have medication which makes you feel better. It makes no sense psychologically to feel well and have medication which makes you feel ill. In that way, cancer messes with your head. It’s counterintuitive to mess with something that appears to be working well. I don’t think we’ve evolved to cope with that.

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I really hope they sort that out for you. It doesn’t sound d like the sort of thing you should have to put up with.

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I think maybe you are looking at a combination of things here . The Letrozole and being pushed into menopause and having your brain chemicals messed about is one thing - it may settle down given a few more weeks. I opted to stop Anastrozole after 5 months but for about 3 months I had severe menopausal side effects that saw me going to the GP for an ECG due to a thumping heart. Eventually the weepiness the brain fog improved the thumping disappeared and I got fewer hot flashes so it’s possible that your mood might reset itself to an extent eventually.

It may be that there is some PTSD as well . My Mum died 7 months prior to my BC diagnosis and her last weeks and my diagnosis kept going round and round in my head . Thoughts of one set off thoughts of the other. If there is anything else you have been carrying with you it may be contributing to your current condition. Sometimes it’s like being in a playground with a gang of bullies - one thing will have a go at you then everything else senses the weakness and piles in.

Another thing I think I can relate to is that dissociative body dysmorphia that you describe . Before BC I had a retinal vein occlusion( I realize this is not on the same scale as MBC but bear with me ) . From the outside my eye looked perfectly normal yet it didn’t work properly and caused me to bump into things / fall over and made a simple task like cutting flowers hazardous because I nearly cut my fingers off as I couldn’t put the scissors where I wanted them. I felt completely defective and unfeminine far more so than after lumpectomy - I didn’t want my partner near me at all .I used to look at my eye and think about was going on inside .People didn’t understand and kept telling me it would get better I knew it wouldn’t get any better I just had to learn to adapt to it in order to be able to live safely - which I have done . I found myself saying " it’s not going to get better " long before I had accepted the fact and I said it without emotion . I knew the emotions should be there but I often couldn’t always access them. I was seeing a Counsellor at the time and she said this was dissociative. You also have something going on inside you that isn’t visible so you feel you can’t trust your body anymore - I can totally understand your feeling of your body not being your own and not liking the look of it.

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Not for the first time I’ve accidentally pressed send too soon . I just wanted to second the advice to ask for counselling . Take care - you are trying to process huge physical and psychological changes , it’s really tough for you . With love xx

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Thank you.

I’ve asked for counselling, and I’m on a waiting list to get assessed to see if I can go in the waiting list. The GP gave me antidepressants today as well.

I’m sure there’s added trauma behind there. I lost two babies a while back with genetic abnormalities which gave me the feeling that I wasn’t a competent individual. I was abroad at the time and it was handled pretty brutally. I’d not quite reconciled to the idea that I wouldn’t be able to have kids with my present partner when the cancer showed up. On top of that, he’s lost his physical interest since my hair went with the chemo (the hair is back but not his interest). I feel a ni to like a housekeeper now.

If my body was a car I’d send if to the scrap yard!! I don’t want to identify with it - it’s not “me” and I don’t want it to be. I guess that’s a dissociative state of mind?

I wonder how many people feel like this?

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I hope that the antidepressants and the tablets will help you. I know it’s hard for partners but his reaction can’t be helping you at all and maybe he might be efit from support as well though getting him to admit that and seek it out might be hard.

There are many posts on here re the reaction of partners friends and family members and how people have been hurt by them . Mine has been ok with the BC but has been completely unhelpful with managing other challenges I’ve had to deal with recently such as clearing my Dad’s house . Due to having the retinal vein occlusion I was investigated for sleep apnea which I thought I would not have as I didn’t have any issues with daytime sleepiness. Turns out that I do have it and now use a CPAP machine which is embarrassing - really not possible to look attractive with the mask and tube strapped to your face . My partner seems to be afraid of the machine no matter how many times I have tried to explain it . Unless we are away when somehow it’s ok we rarely sleep in the same bed. This then makes me find find him less attractive - a vicious circle.

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Wow “It makes sense, psychologically, to feel ill and then have medication which makes you feel better. It makes no sense psychologically to feel well and have medication which makes you feel ill. In that way, cancer messes with your head.” What an excellent quote!!!

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I felt very low after starting Letrozole. I couldn’t explain it but also couldn’t snap out of it even though I had no reason to feel low every day apart from the BC.
I spoke to my GP and started taking sertraline. It was a lifechanging decision and that day I started feeling more like myself.
I can now put things in perspective and feel so much more rational.
It’s not going to work for everyone but all the time I’m taking Letrozole I’m going to take an ssri too.
Hope that helps.

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Here’s a thought that could help. Many types of antidepressants are also used effecively against hot flushes, sertraline might be one, I also know citalopram is another. They could be beneficial in two ways for you. I remember while on tamoxifen how exercise induced an early sweating situation way before you’d naturally be sweating as much due to exercise. It made it more uncomfortable and harder to do as much, as it felt like I was towards the end of the workout from the start. Just not a nice feeling really.
You might be able to access counselling quicker via McMillain or Maggies I believe, though you probably get a set amount, so stay on the GP list, but meantine try that route.

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I notice you say ‘current partner’ which maybe is implies you hadn’t been together all that long prior to diagnosis? ( sorry if wrong on this). When I think back to those Ive dated over the past 15 years, not one of them would i have wanted, or deemed worthy, to go through this journey with. Glad I was single when diagnosed. It’s different if you have a history of years together, when you feel you are backed by the other person, but if the history and respect isnt there, something like this is going to shine a light on what’s missing. It can certainly show up flaws in a person you never realised were there. Its understandable that love life takes a back seat, but if affection and care becomes less, just at a time you may need it, are they the right person to be on the journey with. Look to family and friends for support if this is the case, you find out who is in your corner at times like this. Give your time to people who deserve you.

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I maybe wrong but to me it sounds like you’re punishing yourself for your body getting cancer and letting you down. So you don’t think you deserve any enjoyment.
Every time I tried to think about my diagnosis, it felt like my brain would shut down and stop me thinking about it which frustrated me more.

I’ve been on letrozole since October 2023, I had estrogen receptor positive breast cancer luckily found early. I think I’ve had every side effect going.
Dry eyes
Chronic joint pain
Extremely low mood
Palpitations
Really dry itchy skin
Hot flushes that made me feel like my head was on fire
I am after a year and a half starting to feel myself again, I still get joint pain but it’s nowhere near as bad as it was. I started to plan things so I had something to look forward to which I think helps aswel

Just had my one year mammogram and check up which was understandably scary but now have the all clear.

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Diagnosed 9/23 with lobular carcinoma,2 areas in left breast. One was only found with MRI. Decided on BLM and no reconstruction. I’m glad I did cancer was found in rt breast only from the tissue samples. I’m 70, had no menopause symptoms other then dry everything when I was in my 50s. On Letrozole now for a little over a month. Hair thinning a bit, have a difficult time sleeping through the night and feeling moody. I need to tell myself” don’t be a bitch”. My head wants to do projects but my body wants a nap in the afternoon. And sometimes all I want is a good movie or book and a cup of tea all day. Husband took me to a nice dinner the other day. Didn’t really enjoy it wanted to go home and get in my PJs. ( smiled and kept feelings to Myself) My husband is an amazing person and was a good caregiver also very understanding.Sometimes I don’t think I deserve such a great guy Some of my symptoms are possibly age related and Letrozole. So I can only guess your feelings are a combo of suddenly menopause!!! and Letrozole. Because menopause can be really crazy. As for the exercise and hard work I don’t do 8 miles but it does make me feel better. I find myself thinking as I exercise “I’ll beat this cancer. “As if I can exercise it out through sweat. And getting pissed off at it.
We are all here for you and each other. We understand we get you
Sending hugs

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I can empathise with how you’re feeling. I’m 69 and I’ve been on Letrozole and Ribociclib for Secondary Breast Cancer - tumour behind my sternum and bone mets - for two years plus now. The drugs are holding the cancer steady, according to the recent scans but my motivation to do things is pretty much nil and I have a lack of energy too. Doing anything feels like a huge effort.

I’m prone to depression anyway and before Christmas had a bad bout of it and ended up increasing the antidepressants I take and feeling guilty that I needed to when there’s so many BC sufferers worse off than me. It’s stopped the constant tearfulness but the lack of motivation etc remains, especially with the winter weather. I had a psychology assessment for counselling recently and she didn’t just cover my reaction to the breast cancer but some things that have happened in the past. We talked about how I’ve coped with some big things then had depression months later. She suggested Post Traumatic Stress may be a factor. I hadn’t considered the Letrozole side effect, so that’s interesting, Not that I can stop taking it, so I’ll have to find a way of coping.

I hope your counselling appointment comes through very soon and that it helps you find a way through this. Be assured, you’re not alone. We may all be in slightly different journeys but we are all there to support one another if we can.

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Ok, not exactly your experience, but somethings I relate to…
I was diagnosed with DCIS EP+and PP+ last year, had a lumpectomy, they discovered some invasive cancer, got diagnosed with BCRA 2 mutation and hence had both a couple of sentinel nodes and my ovaries and FT tubes removed all together. I was 50, my body had no intention to head to menopause (any time soon, I was told) but alas I entered it swiftly albeit surgically. Due to the EP and PP + I couldn’t take any HRT and given the fast progression they had seen and the mutation I was put on Tamoxifen for a few months until I had a double mastectomy (last November)… all that prelude to say: tamoxifen did a number on me. First month was ok, and then increasingly worse and by month 3 I was depressed, had no wish to do anything, and burst into tears at everything for no reason at all. Not to say anything about the other menopausal symptoms (hot flashes etc) that also got worse.
The other thing I would say is that I am an ultra runner (50+) and when I started running long distance (only a year before my diagnosis) I found that I had finally discovered the sport that helped me deal with the very high levels of cortisol that my body produces… basically its the only thing that took the (depressing nag) out of my brain. I would not categorise myself as depressive in any way, but I did have a depressing nag (self doubt, critique, etc etc etc sitting there in the background at all times). While I was on Tamoxifen I continued running and it helped, I think. I had to quit physical activity after the double mastectomy and only just started back again… but I must say that removing the tamoxifen has been a mood game changer.
I hope that you find the tools to get you through this in a better way. Sending good thoughts!!! A

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I run a lot as well - not ultra distances, but just a regular amount - hills seem to be my thing (in the Lake District). Either that or garden work seem to be a necessity now - I get restless if I’m indoors or inactive for too long.

I’m taking duloxetine now, and the pain and anhedonia have stopped. Not the freaky feelings of disgust, though. The oncologist thinks it might be a problem with prolactin, which makes sense because I had the same feeling when I was nursing my son.

Biochemistry is a weird thing. Out of control chemicals make you think you’re in danger or at risk when there’s really nothing there. It’s very strange, but it’s almost impossible to persuade yourself that there’s nothing to be afraid of when your brain is telling you that there absolutely is!!

Take care and all the best!

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The brain is an incredible thing indeed :slight_smile: Hang in there. Sounds like you have found the things that work for you. I think cancer might be helpful in making us really focus on what works for us :slight_smile:
Big virtual huge, A

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