Tamoxifen : I have been on Tamoxifen... - My Breast Cancer ...

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Tamoxifen

galgo profile image
14 Replies

I have been on Tamoxifen for 5yrs I have been.having trouble with incontinence and a burning constant sensation in my vagina I.have had numerous urine tests always come back negative This went on for months with constant visits to the doctors with no.satisfaction In the end I paid to see a neurologist who said she new exactly what was wrong with me it's was.lack.of eastrogen I have just finished a 12 week course of HRT pessary and its all cleared up Not sure if I will restart.tamoxifen or not

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galgo profile image
galgo
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14 Replies
Happyrosie profile image
Happyrosie

difficult decision. You need to consult with someone who knows what type of cancer you had, who can help you decide what kind of therapy you need.

galgo profile image
galgo in reply toHappyrosie

I have had Breast cancer 5 yrs ago

Redwine50 profile image
Redwine50

I have been on tamoxifen for8 years and was told I could never have hrt.I ended up with hysterectomy and still have hot flushes and mood changes that I ended up with antidepressants..like you I worry about it.what did your go say .good luck x

mathematics profile image
mathematics

I know exactly how you feel. I had tamoxifen for 5 years then they put me on letrozole for another 5 years. I am off both now as they said that it would not do me any good for taking it any longer. However I was getting bad urine infections and as my periods had stopped I was getting break through bleeding all the time. Also bad burning pains when passing urine at one time. I even had a camera to check what was happening but the consultant said it was all hormonal due to the letrozole at the time. Since coming off all meds after being told I could by the specialists my body has gone back to normal however I still get break through bleeding in my urine which has been checked out thoroughly and they said it is nothing sinister. Hope that it sorts out for you soon.

galgo profile image
galgo in reply tomathematics

Yes it does thankyou I also had a camera put up my vagina thought I had ovarian cancer I'm fine now z

Sheppie profile image
Sheppie

Hi Galgo. I have been on Tamoxifen for 3yrs. It is down to stop in 2 more years. Can’t say it has given me any specific problems. My breast cancer was estrogen positive so unable have any hormones. Have a vaginal cystocele. Side effects to that not wonderful. Have vaginal pessary to hold things up. Also now diabetic Type 2. This can give side effects to bladder and vagina. Do ask your GP if you need to restart Tamoxifen. They quite often stop after 5years. Glad to hear things are better.

galgo profile image
galgo in reply toSheppie

Hi I also was estrogen posative but these pessary are OK for us I they are called vagifem I have had so many prolapses due to no eastrogen that its caused me a.lot of.problems I see my urologist next month and ask about Tamoxifen but I know people on it for 10 yrs and the cancers still come back

Fran4 profile image
Fran4

Thank you for your post, it has answered some of my questions. My doctor sent me to the incontinence clinic as I keeping saying I was having cysts for a couple of hours then it would disappear for a few days and I was told at clinic there was nothing wrong with my bladder. I have been on Letrozole for 3 years, thank you.

LPBath profile image
LPBath

Hi Galgo - that is great news! These symptoms are so common in women as we get older, or if we have to take Tamoxifen or AIs, or have a surgical induced menopause - as our oestrogen levels decline (known as genitourinary syndrome of menopause). It is important to keep on with the vaginal oestrogen though, to prevent further symptoms. It is safe to take for the long term, whether or not you have had breast cancer. It seems that a lot of women don’t know about this but it can be a huge relief of sometimes very painful symptoms! All the best xx

galgo profile image
galgo in reply toLPBath

Thank you I stopped Tamoxifen when I.started vagifem so not sure if you can take both will.ask my urologist next month

LPBath profile image
LPBath in reply togalgo

There are a number of research articles showing that it is safe to use a vaginal oestrogen, such as vagifem, at the same time as tamoxifen. It is not quite so straightforward if you are taking an AI. It may be worth reading around this before your appointment so you are clear about what you want, and know about the available evidence - sometimes health practitioners are not up to date with the latest evidence so we need to advocate for ourselves!

galgo profile image
galgo in reply toLPBath

Yes it's taken since Christmas to find out why my vagina stung and was painful all the time My urologist knew straight away what was wrong with me I could have cried

Breastcancer132 profile image
Breastcancer132

I’ve been an anastrozole for 6 years. I have developed vaginal atrophy which is caused through lack of oestrogen I have a product prescribed by my GP called replens MD which is a long lasting vaginal moisturiser it is oestrogen hormone free. it is one application every three days. It works!! it stop all the stinging and uti symptoms you described as I was having the same problem. it’s worth a try. take care

LPBath profile image
LPBath

Hi Galgo - these are some articles that I mentioned in my previous post which may be helpful:

acog.org/clinical/clinical-... committee-opinion/articles/2016/03/the-use-of-

vaginal-estrogen-in-women-with-a-history-of- estrogen-dependent-breast-cancer

cancerres.aacrjournals.org/... 72/24_Supplement/P2-12-05

ascopubs.org/doi/full/10.12...

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