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Hot flushes unbearable don't want antidepressants

suziesuze
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well 6 months after coming throu breast cancer treatment has left me feeling Sad, Angry. still in pain from a lumpectomy surgery & still shocked I even had it in the first place and fearing for my future. I am told by the doctor they are, I quote " not that worried about me" Well i bloody am! the thought of only having a yearly mamogram is scaring the hell out of me and then only every 3 years ! what!!  They dish out this Tamoxifen like its sweets and say you will get used to it, Really ? no sleep what so ever, fitfull 20 mins all night inbetween bouts of sweats windows open, windows shut, getting up for wee like 7 times or more in one night and upset stomach that feels like the after effect of a huge curry and a night on the booze ! I don't think and  DONT WANT TO ever get used to that.

 

I JUST WANT TO FEEL NORMAL AGAIN....

I am single and have been for many years due to a marriage ending so now during the many lonley hours tossing and turning  and feeling dirty and smelly from sweat & feeling like this really is being plunged into a living hell I lie there and think well thats it then ! sex life over no guy is going to put up with this ! I couldn't even bare the thought of another person in my bed taking up my cold spots or cold pillows i turn over. I am 45 I should be grateful im still even alive after breast cancer but all i feel at the moment is a huge sense of loss for the active fit life I once had.

I was never in all honesty a good sleeper but now well I feel as if i might as well not even bother going to bed and watch Tv all night. I do not want to take antidepressants I struggle with the thought of taking Tamoxifen 10 years as it is. well If i live that long because the latest thing i read is in most cases 20 40% of cancer returns in the future in other parts of the body ! so great we take a drug for 10 years to beat breast cancer and its going to come back anyway else where so why bother having years of misery on a drug im asking myself.

I keep asking about Aquapuncture and they ( they being the medical proffession) seem to say yea it might help. Im like ok then let me have some ?? I can't afford to pay for private i barly can manage to pay for my bills and food shop and buy for my kids. Why do they docs all seem to think everyone wants to pop  ANOTHER  pill to make it all go away. 

 

I went to the health food shop yesterday and spent £35 on vits ! bloody hell that was a shock at the till. but he assured me these were good. Time release vit c. charochol and B6. Think might have to look in the 99p shop after these are gone !

 

I am not due to go back to the hosp now for another 8 weeks to see the oncon but I feel a bit abandonded. I went to my local GP about the weeing problem and sweats and she looked it up in a book and said ah yes Tamoxifen has these side effects told me she would send my wee off to check it and that was that, bye ! I walked out thinking is that it ?? what can you do for me to help me live with this ?

I feel with breast cancer surgery you know at some point wether its a terribly sad removal of the breast or a lumpectomy the physical pain will eventutually heal, Radio T and Chemo will eventually end and side effects eventually pass in time. With Drug side effects when you are being told to committ to it for 10 years !! are not being address how the hell are you supose to deal with that ? The oncon said it will get better- on the advice of taking hormonal drugs they say the side effects will go when you stop taking the drug, sorry but i am  not putting up with this for f ing 10 years ! these should be my fun years now kids getting older im in my 40s for god sake!

Does anyone else feel like this ? because my friends SO DO NOT GET IT. ! they are like you beat it come on lets go out and im like are you joking ? just because the cancer lump has been taken away the threat of it coming back and the side effects of the drugs is ever present in my mind 24/7....

Suzie.

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    Suzie, I can relate to what you say about friends assuming the cancer is past and we should be moving on, while all the time it's now an indelible part of who we are.

    Re hormone drugs, I took Letrozole for a year but my joints and muscles seized up so it was stopped. My oncologist is considering whether Tamoxifen would be appropriate, but I haven't heard or seen anything about Tam other than what you describe. And I'm fed up taking drugs! I'll have to make a decision at some point about whether to take them. Part of me feels that declining further cancer treatment may be, for me, the best way of trying at least to move on from this whole experience (I appreciate everyone will make their own choices for their own personal reasons).

  • Offline in reply to vainbear

    HI Vainbear. Well I wrote a heart felt e mail to my 2 closest friends of how i felt and one never replied and the other was very much in the mind set your lucky to be alive my mum died and she was 65 ( im 45) Its very sad yes  & it was cancer, and it happened very quick and one day i know I will loose my mum too. Or the way its going she will outlive me ! but I just hate it when people compare other peoples experiences on treatment and death to yours when they are not even the same type of cancer or ages etc. Everyone is different.

    I was watching this you tube speach today some american oncon and his message hit the nail on the head he said "  Now we know so much about cancer its time we started to treat the individual "people" and hes right- just because Tamoxifen has been used since the 70s it does not mean theres not something better or its going to suit everyone. I know for a fact since i been taking it a few months i have gained 12lbs at least ! and im having no sleep and hot sweats and upset stomach and im adament its from Tamoxifen.

    One of oncon at the hosp said when i challanged her about the safeness of Tamoxifen creating other cancers whilst slowing down or stopping the other she said belive me you do not want to be on the other ones...... SO im sure they are all very aware of the side effects.

    Also read something on one of these online forums a patient said to the Doctor/onconligist if your child or your husband/wife had cancer would you let them take that drug- would you tell them that radio T is ok and safe. would you really ? and I bet the answer would be hell no !

    Foned the breast care nurse today see what she says. its all good and well them having a little chuckle and saying it will pass. this is not normal women hormonal stuff that we used to only hear whispers about when we was kids about that batty old aunt this is real side effects  FROM A CANCER DRUG.

    Just back from a Long dog walk. couldnt be bothered really  but its for exercise and to clear the mind the woods are lovely this time of year, gets me thinking thou about the past life i had when married etc and happy when im on my own walking. Time to make some home made soup now with tons of veg !

     

    Suzie

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    Hi Suzie, I feel your pain!  I had a mastectomy 21 years ago, and took Tamoxifen for 5 years, following 6 months of chemo. I was 45. The thing about Tamoxifen, is that it normally kicks off the menopause, and that's probably what you are experiencing. It hits you like a ten ton truck!! You get every sympton at once - not pleasant. I had sweats, tantrums, low mood, and I won't lie, althought the moods swings faded, the sweats remained for a few years. It does get better - trust me. I'm now 66, still working, and fit as a flea. I had gone through the menopause, and out the other side, when all my friends began suffering with their own menopause!

    My fear of the cancer returning took many years to leave me. Every ache, and twinge had me rigid with fear. That feeling too, wanes.

    Keep going girl - you WILL come out the other side. :)

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    suzie I really know how you feel and trust me that it is something you will deal with. I had a mastectomy and reconstruction and the medication I am on like you makes the hot flushes unpredictable. I have a fan practically in every room of the house and I now tend to make a joke about when I have to switch them on. I even have one in my office at work, but what you must try to do and I know it's not easy is to not let what is happening take control of your life. Cancer is indiscriminate and like me you have been dealt a really crap hand but you and I are both hear to talk about and yes even moan about the efffect it is having on our lives. We are still lucky to be able to do that and yes you may still be scared and angry and every other emotion that goes with having come through possibly the worst thing you might ever have to face. No ones future is certain and there are no guarantees for anyone that has had cancer that it won't reoccur, but you have to try and move on from it and live each day as it comes hot flushes and all because it's another day that you have cancer free.
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    I'm 3 years into Tamoxifen. Side effects are horrendous but I'm going to keep taking it because research has evidenced that it increases my chances of survival and that is why we're going to keep taking it. I would rather be sweaty, have urinary frequency and be alive. They say it gets better and it really does. Stay strong.

    also. The joy of being single is that you can move to the other side of the bed when it's soaking and next time you wake up you can move back again. Every cloud...

  • Offline in reply to suziesuze

    Hi Suzie

    I was just reading your post of a couple of years ago and I totally agree with everything you have said. I'm at the beginning of the journey, just had my lumpectomy for stage 1 IDC breast cancer. I'm waiting on the results of that as I had nodes taken too to check. I know I will be going on to Tamoxifen and am so not looking forward to it.

     

    How are you getting on? Has it got easier for you?  Hope you're well.

     

    Xx

  • Offline in reply to Getorade

    Hi Getorade. 

     

    I’ve been on Tamoxifen since September 2017 and I’m going to be honest, the first six months were absolute hell. Drenching sweats night and day, confusion because of lack of sleep, feeling sick, mind numbing tiredness. Add bloating in the mix and well you get the picture. I was offered anti depressants to control the sweats but I declined them. I’m taking one lot of medication which can affect my mood quite strongly, I’m not putting something else in the mix that can do the same thing and I said so to the consultant. 

    It is getting better, looking back I’m at least 100% better than I was.   

     

    All I can say is try it. I was told it takes at least three months to get used to Tamoxifen. I’ve got thro it, the medical profession were one stage away from useless with help about controlimg the side effects so I, like a lot of people in this position, found my own way thro it. 

     

    Good luck!

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