Hi First time I’d posted and it it took a while to come up and then as I"m so tired on Tamox I was in bed asleep.
Im seeing my cancer doctor. not putting up with this! It’s quality of life isn’t it and feeling rubbish effects everything. keep you posted. I had stage 1 not in lymph nodes or anything.
hi was just reading all your comment im been on tamox for a year now hot flushes have now gone but bad cramp like period pains and swelling stomch so went to my gps got sent for scan to find i have thicking to the lining of my womb so know have to wait for hospital appontment to see my onc
It’s such a relief that I’m not the only one. Ive , taken tamoxifen for nearly 3 years and the side effects have really gotten to me the last few weeks. I suffered terrible fatigue during hercrptine and I feel like I have no energy , perminantly in a fog and can’t concentrate. Ive only managed a few hours the last 2 weeks in work which I feel is rediculous as I’m onky 39. Yhink my boss and team are getting really fed up now. Im off to the hospital to see the onc hopfully yhis week following bloods and an mri scan.
Just like the other ladies I also have terrible acne and know that if I drinj a few glasses of wine I will spend the following day in bed. Id be interested to know what others have done as coping strategy
Sorry about thbad spellingand grammer but the sitedoesn’t work well on my tablet and I can see the text, t
I just felt I had to join this thread. I had an MX in April (3 grade 2 IDC tumours, extensive DCIS and LCIS, ER+ 8/8, no node involvement). No chemo, no radiotherapy, just tam. I took it for about 3 weeks and then just stopped. The side effects were just too damaging to my quality of life. I put weight on immediately, developed a moon face, was mentally confused all the time to a ridiculous extent. One evening I pointed out the ‘beautiful red moon’ to my son. He told me it was the sun going down. I argued the toss with him, even saying, “if it’s going down then must be the moon”. The fatigue was like nothing I’ve ever experienced. For five days I couldn’t be bothered to wash, get dressed or even answer the phone. Getting hives one night was the final straw.
I confessed all at the clinic, and had a good chat with my onc. She looked at the predicted benefit from taking the tablets (0.9% over 5 years, 2% over 10) and said OK, don’t take it, we’ll review the situation in a year. She said that it would take up to 3 months for the drug to completely leave my system, but within a week I felt ‘myself’ again. I’m back at work, and have a much more positive mental attitude. I’m glad I made the decision as I’ve got my life back, and my children have got their mum back.
Who knows what I’ll do in a year’s time, but for now I’m going to get over the mx, and get my life back on track, and enjoy every moment until decision time comes round again.
Lisa - I typed out a long reply, posted it and it disappeared! Aaaggghhhh!
I still think that what you describe could be acid reflux - the pain can be terrible and I often get it upper abdomen.chest area. Other symptoms may be something different entirely, for example, tamoxifen gave me joint pain in the back. Spotting shouldn’t cause you to roll around in pain so perhaps you need to discuss this - could it be gynae pain - a cyst for example?
the fatigue might well still be related to your treatment as it can take ages to go and may also be linked to the tamoxifen which has tiredness/fatigue as a side effect.
Please let us know how you get on with your tests.
Elinda x
Hi Elinda,
Pesky computer… Thanks for taking the time to re-type your reply!
I am seeing my onc on Monday and will talk severe fatigue, brain mooshiness, spotting and awful pelvic cramps. I have the abdo ultrasound booked for Thurs to look for any gall bladder/kidney/liver issues that might explain my pains and feeling rubbish. I’m not sure if the ultrasound will also look for cysts or womb thickening. Sounds possible - I was clear before tamoxifen so we will know the cause if any are there now! I will mention womby things to the onc and see if I need a different appointment/test from him. I think you might be right about joint pain in my back/shoulder area from the Tam, and/or reflux, especially as it is worse after alcohol. Hopefully not my liver packing up 
I have decided to come off my antidepressant (mirtazapine) as it only makes my sleepiness and fogginess as worse, and I’m not coping very well with the side effects (e.g. restless legs at night) of that either. I just hope my depression doesn’t come back, and that I start to feel more alive soon. My psych says my lethargy is depression, but I’m pretty sure it’s medication related. As you rightly say, fatigue is a known SE of tamoxifen. My psychologist also reminded me that 4 months post rads isn’t very long, and even just one chemo can have effects for months/years afterwards. It takes ages to get over treatment, I know. Maybe I’m just being impatient or too hard on myself. But I don’t like the new me 
On top of all this, my work are starting to be a bit funny with my only working part time and complaining that I’m fatigued and suffering from cognitive impairment. The HR director said it was a lie that I was brain foggy - the bloody cheek of the man! Apparently I look fine (i.e. not gaunt or jaundiced) - but as I pointed out to them I didn’t have cancer on my face!!! So I am going to ask the onc to to write to work to explain cancer-relate fatigue as it applies to me/my treatments. Pre-empt the sacking. I don’t need that extra hassle right now. Grr!
Thanks (everyone) for your support. Will keep you posted in how things go next week.
Lisa x
Lisa I hope you are keeping a diary of your contacts with your employer as you may be sailing into troubled waters. I had a brush with my boss over my fitness to work and I sought advice from ACAS on th suggestion of Macmillan and the advice they gave me was very good. Luckily in a way I am on SSP now so the whole thing is on hold. But I think HR in most workplaces has a long way to go to accept that Cancer really is a disability. They are usually pretty naff about Depression too! Good Luck!
Thanks Penny, as if we don’t have enough to deal with eh! Glad ACAS were able to help you; I will get in touch and see what they say. I know I’m heading for more trouble; the tamoxifen brain fog doesn’t help my work efficiency or quality so I can understand they want to get rid of me. My boss and a another colleague on my level are looking at restructuring the team… I think I know wheat that means…
I’ve not been keeping a diary of events but will start now. I was referred to (in jest?) as a malingerer, right before a return to work review. There was also the time I heard someone say if I could play squash then I can work full time (exercise to combat fatigue, and I hardly got out of breath). They somehow think my fatigue is related to my collapsed lung (it isn’t at all, I had the lung problem for month before bc dx and had no fatigue!) and don’t recognise cognitive impairment or fatigue from cancer treatments. I keep being told I look ok, so they don’t understand my fatigu
xx
Hi Lisa
I hadn’t realised that you were only 4 months post treatment so the tiredness and general feeling of being unwell is hardly surprising. In fact, I’m surprised you’re even back at work yet!!! Some people have 6 months off work for a hysterectomy and you’ve had so much more done.
Apart from the tamoxifen, there is something called ‘chemo brain’ whereby chemo can lead to brain feeling fuzzy and tiredness etc. It’s so soon after treatment and it can take far far longer to recover completely. I am wondering if you went back to work too early?
What you’re describing sounds more like normal recovery time than long term fatigue to me. I could barely walk for 20 minutes without getting very out of breath and having to lie down afterwards at 4 months post treatment and certainly couldn’t work or play sport . I’m not in any way dismissing what you’re experiencing but it might be worth re-framing it for your employers but I’m no expert in what is actually classified as ‘fatigue’ - Macmillan could probably help on that and others may be able to advise. Incidentally, I went onto ESA as I was self-employed and didn’t have to have any medical for the first 12 months post treatment because it was accepted that recovery time was that long.
the fact is that your employers sound incredibly ignorant if they are saying you look okay and there is no such thing as cognitive impairment post cancer treatment or with hormone therapy. Every part of the treatment is a real bashing to the body and chemo and rads really take it out of you. I agree completely with the advice to contact Macmillan on this employment issue as there are legal issues too on this and they can advise.
Another thing that drains us is anxiety and clearly and understandably you are very anxious about the physical symptoms you are experiencing. Again that’s nothing unusual so soon after treatment and I’ve been much more anxious since my cancer diagnosis and I’m 4 years down the line. The last thing you need is the worry about your job on top of all this.
I’m not sure what the best thing to do is but I’m sure that being called a malingerer even in jest is absolutely not acceptable and I’d make your union aware of this. How cold-hearted some people are and ignorant with it.
Everyone’s recovery is different and you need as much time as you need. Some times people go back to work too early and then start suffering more with tiredness etc.
Do you have a sympathetic GP or Oncologist or breast care nurse you can talk to? I really do wonder if you went back to work too soon and are now struggling.
take care and big hug to you
Elinda xx
really rather terrified now about the need to take tamoxifen. i had hysto with overy preservation 6 yrs ago and am 48, cannot BEAR the idea of excessive weight gain, and am self employed so cant not work… radiotherapy imminant not sure about chemo need yet. OMG i am terrified as there is only me supporting myself financially. has anyone got anything GOOD to say about tamoxifen? does EVERYONE have terrible side effects with it?
Hi Pangiewangie
You’re looking at a thread specifically about problems with tamoxifen so you’re going to be hearing the negative side. Thousands of women take tamoxifen with minimal if any problems not just in the UK but across the world.
This forum is great but the temptation to look at things that might make you more anxious is always there. People on the whole, post either because they’re having problems or need some help. Women who are doing really well on tamoxifen and not having problems are less likely to post.
Try not to worry about side effects of a treatment you haven’t started. Everyone is different and for many, even the side effects are bearable. Hope the rest of your treatment goes well.
Elinda x
Pangiewangie-I’m on Tamoxifen and have lost almost a stone in weight. I have been sticking to a slimmers world type plan and have tried to get daily exercise even though I’m knackered. I’ve only been taking it for 3 months but am trying very hard not to put weight on.
I’ve been on Tam for about 3 months - it is harder to lose weight, but I’m certainly not gaining any. (I am very careful about what I eat though).
I get mild night sweats and the very occasional day-time ‘glow’ - not even close to being a hot flush really.
Brainwise - yes, I definitely know my brain is not as sharp as it was. I make mistakes, forget things, and I don’t absorb information as I used to. I get very irritable too - very like PMT used to be. The net result is I get angry with myself for making mistakes, and slightly paranoid that my employer will notice my new failings and down-grade my job. This may be due to the Tam, or might be a chemo after-effect, but either way I am aasuming it is permanent, and am making sure I adjust my way of working - for example by making more lists of things to do, and reading things more carefully.
I have not mentioned to my employer that my brain is affected - apart from some mild aphasia that means I lose words. They have been fabulous all the way through my treatment, and I am keen to continue working for them, at least till I pay my mortgage off!
So just started tamoxifen again, taken my first pill. Had several years off it but now back on it. Dreading having the same side effects -some were worse than others. I took it for nearly 5 years last time and I didnt have the same se all the time, so thought I’d share my experience. I found some of the advice on this site very helpful back then, don’t know if the advice is still there - I tried clonodine (migrane medication) which seemed to help with hot flushes and night sweats, which lessened. Some weight gain, light headedness and aches but okay and liveable. Tiredness and fatigue and brain ‘fog’ the worst but this also seemed to vary depending on the brand of tamoxfen. The tiredness was also part of recovering from rads and I tried to pace myself, which helps. Previously, most of the time I took Nolvedex D which seemed to have less severe side effects but dont think its available anymore.
Hi Jenny29,
i think you’re right about the brand, it’s all generics in the UK now. I normally take Wockhardt which I get from Boots; when Superdrug filled a script a few week back it was Relon and I didn’t like it so am back on W now. Fatigue and feeling awful still not better - so somehow I feel “better” on the same brand, in terms of anxiety about brand at least!
Thanks for sharing your experiences; hope you have an ok run on tam this time around.
Lisa xx
Hi ladies,
Just a v quick update on me in case anyone is interested or it can help someone else in the same boat.
I had an abdo U/S today to check for gall stones and look at my liver - all fine there 
No explanation of the upper back/right shoulder pain and creaking, mind.
While I was there I mentioned my pelvic pain, feeling uncomfortable/full in my lady parts, and spotting and the sonographer took a peek… Elinda, you were spot one with the cyst! Well done you!! A 7cm cyst originating from my left ovary!! Anyway, all looks B9 and just a “simple cyst”. Waiting for GP to refer me to gynae; they might drain it but if not will keep an eye on it over the next 6m.
I don’t know if I can blame tam, and a cyst isn’t reason enough stopping taking it, but I haven’t had cysts before. So there might be some causal relationship. Although I know cysts are common in non-tam women, and there is some history on my mum’s side of the family. Why don’t parents tell you these things before it happens! But I guess we know what caused the spotting, cramps and maybe even the sciatica I’ve been getting…
Such a relief it isn’t anything else!
Lisa
Lisa well done your U/S radiographer to persist and use his/her head and listen to the patient! (I always find it hard to speak to professionals lying down!) The relief must be enormous and once again, a lesson in not Suffering in Silence! Good luck!
Hi Lisa
So pleased that you have updated us. Sounds like you were very lucky to get a radiographer that took a look for you and didn’t stick to just the area she’d been told!
I thought a cyst sounded like a possible option and this may of course be nothing to do with the tamoxifen or treatment at all and one of those things you would have had anyway. Definitely worth asking the gynaecologist if he/she thinks its related to the tamoxifen.
In terms of your upper back/shoulder pain - is the side of your surgery and what did you have done? I’ve had quite a lot of shoulder pain following my mx and axillary clearance. Depending on what you had done, it could be the next step might possibly be to get a physio referral. But you can get joint pain with tamoxifen and younger women do seem particularly affected by that it would seem from the forum. The other thing is that it’s still such early days in your recovery and your body has had quite a bashing and it will take time to heal fully. Maybe you’ve been quite a lot less physically during your treatment and recovery and this might affect your back - I know it did mine.
If you think there is any likelihood that your shoulder pain is related to acid reflux (ie when you drink alcohol, have acidic or fatty foods, large meal or spicy food, worse when you lie down in the evening) then it would be worth speaking to your GP about a course of proton pump inhibitors (such as lansoprazole or omeprazole). They usually give you a 4 week course and see if that clears things up but you can go on them for longer.
I hope that you’re now feeling much relieved that all is well with your liver and gall bladder and you can put things to rest there.
Keep us posted
Elinda x
Hi Penny, Elinda,
Thanks for your replies and encouragement! I am so relieved that it is “only” a cyst. Will certainly ask the gynae if it might be due to the tamo and see what they can do to manage the pain if not the thing itself.
Yes, I think I was really lucky to have a sonographer who had patience and time to listen to me and not just do what was requested on the referral sheet. I felt a bit guilty at telling a little white lie when she asked if I had mentioned my pelvic problems to my GP; I had forgotten when I saw my GP and he made the US referral, but I figured I was there anyway and seemed silly to have to get amother referral when she had time as it wasn’t busy. As you say, Penny, it isnt worth suffering in silence when people can help. Phew, I guess it might’ve been different if they were fully booked yesterday and I would still be wondering. Just hope she (and I) don’t get into trouble over it!
Elinda, your track record is good so far so I wouldn’t be surprised if you are right about the back/shoulder pain being related to less activity and treatment too - it is the same side (right) as my recurrent pneumothorax and the bc which was treated with lumpectomy, SNB and rads to breast and axilla. The tumour was quite deep, around 10cm in, so getting close to the chest wall (I have small breasts) so the tissue damage after survey and rads would have also been quite deep. I have not been able to do as much as before tx, both from aching and the tiredness; my joints do ache and crack much more than ever before which is probably a combination of treatment and being less active. I am having a look into yoga/pilates at my gym (I joined in May this year, my first ever memberhip, pay £50 a month and have only used it a handful of times… typical! Might as well try a new class!) as that might help with the stiffness and aches. I’m trying to be patient and give myself time. A lady at work had bc 16 years ago and today she said she still hurts from time to time (mostly from her ANC though, and I’m not sure if she was a mx patient or lumpectomy and rads).
Have a lovely weekend ladies, I’m off to put my feet up with a cuppa!
Lisa xx
It never rains, just pours… Gynae referral postponed as I couldn’t get to see my GP this week - collapsed in the shopping centre last Sunday with another giant pneumothorax :(Who knew that shoe shopping was so dangerous 
Three days on a chest drain and suction and all is good (ish - enough to send me home for the weekend as surgery wasnt possible last week) but I have to go back in next week for VATS and pleurodesis on Wed. I am not looking forward to it one bit - the pain was awful with the drain, ESP with the insertion (which took much longer than normal), even with a lot of local anaesthetic and morphine. Guess I have recent rads to thank for that, all the nerve sensitivity and adhesions all over my lung Am expecting a miserable, painful time of it, but hoping the positive step of getting my lung looked at properly and hopefully fixed will help in my recovery. At least it is (planned to be) only keyhole surgery, and am have been offered a place on a pain management trial at the same time as having my op. Hopefully I won’t just get the placebo…!
Is there anyone here had VATS pleurodesis and can offer advice or words of wisdom on coping - I was going crazy last week and very tearful all the time
(I realise I have taken my own thread off topic, for that I apologise. I just didn’t feel important enough to start a “news about me” thread but wanted to update those of you who kindly ask Thanks for being there ladies!)
Have a healthy weekend ladies,
Lisa xx