People living with cancer may experience long-term changes in their hormonal functioning because they are treated with either:
radiotherapy to the pelvis, certain types of chemotherapy, or surgical removal of reproductive organs has damaged normal hormone production,
hormone-based therapies aimed at slowing cancer growth, thereby protecting against recurrence.
Altered hormonal functioning can have many effects on the body, including hot flushes, mood swings or reduced libido (sex drive). Surgical removal of both ovaries or both testicles causes permanent infertility, and women who have both ovaries removed will immediately feel the effects of hormone changes if they haven't already experienced a natural menopause.
Damaged hormone production due to surgery, chemotherapy or radiotherapy
Several women we spoke to had treatment-related damage to their ovaries or had them surgically removed. Those who were already postmenopausal noticed little or no hormonal changes, although some said it had been impossible to distinguish these from treatment side effects. One had already taken hormone replacement therapy (HRT) before her ovarian cancer diagnosis to counter menopausal symptoms and to treat osteoporosis; while others started after their cancer treatment.
Presumably when you had the surgery they took your ovaries out as well as your uterus?
Everything. So you had like an enforced sudden menopause?
You were not menopausal before?
This happened in October ’92. I had a period in October ’91 and that was it, I didn’t have anything else.
So you were perhaps just starting anyway?
I would think so. I would think so.
So how did you feel about losing your womb at that time?
Losing it. Sorry.
All right. I knew that I was in trouble, so needed major surgery, so I just left it' ‘You take what you need and what’s got to come out and just leave me with the basics that I can get on and live with’, you know, I wasn’t the least bit concerned. I’d had my family obviously at 49. No I wasn’t at all troubled by that.
You’d finished your family?
Oh yes, yes. Very much so, yes.
Did you have any menopausal symptoms or is it difficult to separate them from all the treatment side effects?
No, nothing that I know of. I finished my chemo in July ’93 and my oncologist recommended that I start on HRT, which I did in the August, and I’ve had patches ever since then. Still have them, I’ve never had a blip, never had anything that I thought was anything to do with the menopause. Obviously I can’t speak of it because I don’t know, but as far as I know no, nothing at all.
There was a wide range of reactions among women who had been premenopausal before cancer treatment affected their hormone production. Some had been given HRT immediately after treatment and didn’t notice any menopause symptoms, others said they had found this sudden and enforced menopause the most difficult thing to deal with. Women couldn’t always recall having been warned that they would become menopausal as well as infertile, or said they hadn’t realised the full implications of having their ovaries removed or damaged by treatment. Ken (Interview 40) also suffered hot flushes after having radiotherapy for prostate cancer.
I mean I know for certain that my ovaries don’t work anymore, which was fine for me because I didn't want any more children anyway, but it did have a knock-on effect on, you know, the different hormones that were being passed through my body any more. So, you know, I'd had to go onto HRT. I mean I didn't have to but, you know, giving it a lot of thought I did decide to go on it.
So did you start the menopause?
No but what they said was that because my ovaries weren't working any more that I wouldn’t have any oestrogen, so I'm on what they called I think it's extra combi HRT patches. And basically, you know, I was probably about 10 years away from having a normal start to the menopause, so that was, what they said is 10 years away from those hormones which were still protecting my bones for instance. So, you know, it's really because of osteoporosis that I've gone on those. I mean I've had no side effects whatsoever to them, there's no foreseeable sign that I have to come off the patches. But I think it's, you know, as time goes on I will have those sort of questions, well, you know, how much longer are you suggesting I stay on the patches?
Age at interview:
Age at diagnosis:
Hotel Supervisor; single, no children.
I was doing the external radiotherapy and I missed a period. Now it wasn't a problem, I didn't have a partner so I knew I wasn't pregnant, just the sort of expected it may be part of the side effect of the therapy. And I only mentioned it casually to a registrar of the doctor, my gynaecologist that I was seeing regularly as part of the check-up, on my skin and on my bladder, I was doing blood tests that I wasn't anaemic, you know, part of the routine tests that I was doing. And I mentioned, "Oh, by the way, I didn't have a period this month". And she said, "Well that's alright, you are in menopause". To which I exploded, literally, "Why didn't you tell me?"
And at the time I know that I wouldn't have had choice, I mean if I had to have it I had to have it, and that was it, but I felt that somebody had done something to my body that I didn't know, and I hated not being in control of myself. I hated, I don't like for example total anaesthetic because I don't know what's going on while I'm there, what they are doing. I know that they are doing something good to me but still it's something I don't like because I'm not conscious. And that was exactly the same thing that had been, they treated my body and I didn't know about it, and they hadn't told me and I felt 'raped' that they did something to me that I didn't want. I know I screamed and I know I shouted and, I don't know, she just took it and said she was sorry, and probably that was something that I sort of, it's the only thing that I really regret in the whole therapy, all what happened to me, that not the complete information was given to me. Okay I was asked "Do you want more children, would you want children?" To which I said no. And the thought in my mind it implied that I would be sterile after the therapy, it never occurred to me that I would be menopausal. And I felt, suddenly at 43 I felt an old woman, like that was again my idea, a chicken that had been, a dead chicken had been emptied from all its guts, so there was nothing inside me, left inside me, which is completely the wrong idea because everything is inside me, even if it's not working. It's not the fact I can't have children, it's not the fact that I was in menopause, it's just it was exactly the fact I hadn't been told. All through the problem from the first letter saying that there is abnormal cells to the end of the last week when they told me you were off, you are discharged from the clinic, you don't need us any more, I always accepted whatever was done to me, I always accepted that, because I don't know anything about medicine, but I have, I trusted the people that they were taking care of me. And only that thing that they did without telling me. It didn't bother me afterwards, it was just that single episode, and suddenly I exploded, my Italian temper went, the poor registrar just out of university that got me.
And what did, how did, it was a she wasn't it?
How did she react?
Well apologising, and probably she didn't know why suddenly I had this problem. Because she didn't see it as a problem, she thought I knew, and that was it, you know. But she was a doctor, she studied and she knew what radiotherapy meant, and to me it was just something I didn't know.
From the 1970s to the early 2000s HRT was heavily promoted for the relief of menopausal symptoms and the prevention of age-related osteoporosis and heart disease, and most women who experienced an early menopause because of cancer treatment would be recommended it. In the early 2000s, when some medical research began to suggest that it caused harm, attitudes to HRT changed. However this medical research has recently been reviewed and “National Institute for Health and Care Excellence's (NICE) new guidelines say that the risks of HRT are small and are usually outweighed by the benefits” (NHS Choices 2016).
Some of the experiences we have reported here are from interviews that took place before the change in attitudes towards HRT and many women we spoke to were happy taking HRT long-term at that time. However, others had problems or decided it wasn’t the right thing for them. After taking HRT for two years after treatment for ovarian cancer, one woman stopped because she was concerned about the risks; she used a dietary supplement instead. Another found that taking her HRT exacerbated her irritable bowel syndrome, so she changed to a different type of HRT. Interview 90 (quoted above) had difficulty finding a suitable dose; she suffered heavy vaginal bleeding while taking it, causing anaemia, so she stopped after 18 months; the bleeding ceased and she was surprised that she had no menopausal symptoms.
So what happened after that, did you have to go back for regular check-ups?
Yeah they, I went, I think I had to go back and see the consultant after the treatment, it's a very long time ago now.
My memory is starting to fail, but they then put you on the clinic, on the oncology out-patient clinic, and I was going every month. Some people only go every quarter; it depends. They all seem to be different, and they treat, I think they do it slightly different now to what they did. And it, I think it varies from town to town as well, from every oncology unit seems to handle it differently. But I was going every month. They take a blood sample every month and an x-ray and then the following month you have a blood sample but you don't have a chest x-ray, so it was a chest x-ray. So it's every other month you have a chest x-ray, every month they take blood. They give you a physical examination every month, have a feel around the remaining testicle and abdomen and round the neck and just check that there's nothing going wrong.
Are you still having check-ups?
I am yes. They keep you under observation for 10 years. As I say, they start you off on, I was on every month, and I think that was for about the first year, then it went to every other month and then quarterly, and it basically steps up until at the moment I now go once a year and, as I say, I'm in the 6th year at the moment, so I've got another 4 to do.
Occasionally, men with testicular cancer may need hormone replacement, in this case the male hormone testosterone. In men who have one testicle removed due to cancer the remaining testicle usually works normally, so their hormone production is unaffected. However, rarely there is a problem with the other testicle or it has to be removed, so that they cannot make enough testosterone. Low testosterone can cause difficulties achieving an erection, reduced libido, tiredness, low mood, and osteoporosis. Testosterone replacement can be administered in a range of forms such as tablets, patches, implants or injections.
One man we spoke to had his right testicle removed because of testicular cancer. Two years later his other testicle was found to have died and was removed; he was given hormone replacement therapy.
And there wasn't much in the way of help for people that had both testicles removed. I then, after about a week or so they then started giving me injections of a hormone that they explained to me that I needed to keep my body going. And then I missed a hormone injection here and there and I began to feel and understand why it was desperate, and I use the word desperate, and vitally important for me to have these hormone injections. People say that the male menopause doesn’t exist; I will tell you categorically that it does. I know that if I don't have the hormone or I didn't have the hormone injections at the beginning, I would have the hot flushes, I would be irritable, I would be extremely fatigued. I say fatigued, not tired, is that it affects your whole body. When you're tired you yawn and your brain doesn't function properly. This was more than that, this was aching in all my limbs, this was pains in my back and my groin, total fatigue, inability to concentrate on anything more than about 10-15 seconds in duration. So my body was lacking something and they discovered, I helped out with some research at a hospital in [county] and they discovered that not only did I need testosterone, male HRT, but I also needed some female hormone as well, which nobody knew or nobody realised. So I started having tablets of a drug called Provera, which I understand is progesterone, or progesterone, or however one pronounces it, and I needed that in addition to my male HRT.
Is that produced in the testes?
That's produced in the testes as well. When they removed both my testicles for testicular cancer they don’t just remove the testicles, they remove the sac that the testicles are in inside the scrotum, and they also remove tissue up inside your groin and some nodes there which control or produce a certain type of hormone. So it isn't just like you lose an arm and they cut the arm off and that's it, there are lots of other implications as well.
The same man had a lot of difficulties in finding a type of testosterone replacement that suited him, and has now settled on self-administered injections.
Okay, the simplest type of HRT, if you can tolerate it, are tablets. You take a certain number of tablets every day, they will last you for around 24 to 30 hours and you have to keep on taking them so it is vital you take the tablets.
Unfortunately for me the tablets made me violently sick. This happens in quite a few cases and I found that I couldn't take the tablets. So the next stage would be patches, these are Andronone patches that go on your skin. I don't wish to criticise a drug but I found that when I was having my blood tests and they were testing my testosterone levels in my blood whenever I was using the patches, even with two patches, which is double the dose, I found that my testosterone readings were below the minimum that could be recorded by the machines that measure the amount of hormone. Also there is a very large problem with regard to the testosterone patches. I have very, very hairy skin, as you can see, you have to have totally smooth skin for the patches, the patches will not adhere to hair, so you're then using things like the adhesive sticky tape to hold the patches down. The patches aren't effective, I'm not saying that they won't work for everybody but I found them an absolute waste of time and then I was beginning to suffer the HRT symptoms that I wasn't getting enough hormone.
We then move on to basically 3 different types of things. There are the pellets that are injected under the skin. Now because the chemotherapy damaged the way that my liver and kidneys produce the enzymes, we found that the pellets were introduced during a minor procedure under a local anaesthetic and the pellets were put into my thigh, deep into my thigh, then the incision was stitched. After about 3 to 4 weeks the pellets lasted, are meant to last 3 to 4 months, after about 3 to 4 weeks I found that I was getting an infection under the skin and the pellets were being, my body was actually rejecting the pellets. My antibodies were doing a brilliant job of rejecting the pellets that were placed in my thigh, the pellets would be literally pushed to the surface by some chemical means that I'm not aware of and they would burst the stitches or the scar and come out in an infected mess. So I then had a wound infection for about 2 to 3 weeks afterwards. After 3 or 4 months of that it was obvious that the pellets were not working for me, so we went onto the final 2 types of things that were available. One is an injection of a very, very slow dissolving compound which is, it's very oily and thick based, and that is injected again into my thigh.
Because it has to be done over about 10 to 12 minutes - I'm just going to stop for one second, but I'll keep running if you want me to go. Okay go on, off you go - because it was done over 10 to 12 minutes again they have to give you a local anaesthetic and it is inserted, I mean a needle like this I have never seen, the needle, no joke, is about that long that they push into your thigh and then they inject this oily goo into the area under the muscle. I found the same things with the pellets, after a time the oily stuff would come to the surface and again I would have a wound infection.
So now I self-administer myself with a cocktail of drug called Virormone. Virormone is a testosterone compound with other things in it, mixed in, and I have a cannula, which is like a small blood sampling kit, that I put into my tummy wall. I deal with it myself, it is very easy, it is painless. Once you’ve done it, once you've overcome the hurdle of the very first time, it is literally painless. You attach a syringe to it and you give it a squeeze and that way you're getting the amount of testosterone that you need without having massive overdoses of testosterone.
I'll come to what happens with the overdoses in a second. I find that because I've
Hormone therapies for breast or prostate cancer
Tamoxifen (Nolvadex) is used to treat women with oestrogen receptor-positive breast cancer. Tamoxifen tablets are prescribed after surgery and treatment usually lasts five years. It works by preventing the naturally occurring female hormone oestrogen from attaching to cancer cells, thereby blocking their growth. Oestrogen is also present in small quantities in men. Men can therefore also develop breast cancer and, although this is rare, most breast cancers that occur in men rely on oestrogen to grow, therefore men may also be treated with tamoxifen.
Mohammad was a machine operator in the plastics industry. He is currently unable to work due to illness. He is married and has 4 children. Ethnic Background: Pakistani.
And now you’re also, the last five years is it, that you’ve been taking tamoxifen?
Yes, tamoxifen regular.
And do you know how long you’ll have to take the tamoxifen?
I might be they finish next year. Because they told me for the five years, if I need it then they can… their advice they might be finished in five years.
They started five years in December 2006. So in December this time… when I go to see my surgeon in April, they might be stopped or keep carrying on.
Do you have any preference, would you like to stop taking it or carry on, or it depends on what they advise?
It depends on their advice. Thing is I’m not, stopped or not taking a lot. If he asked me keep carry on then I carry on. If he stopped it then I stopped it. Because I’m not the doctor, he’s the doctor, he knows better than me.
Some people stopped hormone therapy after taking tamoxifen for 5 years, while others were switched to a different one, such as anastrozole (Arimidex) or goserelin (Zoladex), each of which blocks the production of oestrogen in different ways. Zoladex blocks production of oestrogen and testosterone and may also be used in men to treat prostate cancer or prevent its recurrence (see more about men's experiences of breast cancer and hormone treatments).
Beverley is married with two children. Ethnic Background: White British.
I do go up for regular tests, mammograms and things, and also because the other thing is that they’ve done with me is after five years, I mean you’re prescribed tamoxifen for five years for breast cancer, but because they said I was relatively young, which my children laugh about, they kept me on tablets. They haven’t taken me on. I went straight onto Arimidex, so you also get hot flushes from the tablets.
Because they actually produce sweat so, you know, it’s a, but the thing is they’ve done that they’ve kept me on the drug, so I’m still on the Arimidex. Maybe they’ll come up with something else afterwards. Hopefully they will because my cancer was oestrogen based, so they have to stop my body making so much oestrogen, which is why they’ve kept me on the tablets.
Age at interview:
Age at diagnosis:
No details given.
I've been under two of the local consultants, the first one was the one that put me on Zoladex, it was after 3 years when I started having problems that I was asked would I like to be referred to a second consultant locally to go on a trial of another drug, which was Flutamide. I immediately said yes because I was then starting to experience bone pain. I was told that the Flutamide may help to reduce that. I saw the second consultant and was told that this was a European-wide trial of the drug Flutamide and would I be prepared to take part. I was again given very little information about what it was, about what the drug did, all I was told was that it would probably cause some breast tenderness and probably growth in the breast as well, which it did. I was on that for 9 months
You said you had some problems and that’s why you went to the other consultant, was that problems with the drug or problems with pain?
Well that's why I was referred, no I started having pain after 3 years on Zoladex. I had another bone scan and they said, "Well the cancer is spreading and we need to do something else", which is when I was referred for this trial of flutamide. The flutamide again settled me down and lasted for about 9 months, at which time I started getting bone pain back again and the consultant decided that the flutamide was no longer working. I'd since, whilst I was on it I found out more about it, what the drug did, the fact that it could stop working after a certain length of time. I was the told that stopping flutamide would probably have a beneficial effect, so we stopped the flutamide and I just went back on the Zoladex. There was a beneficial effect by stopping it, it's strange but stopping the drug can have as beneficial effect as starting on the drug.
Age at interview:
Age at diagnosis:
Ken is a retired tractor repairman. He is widowed. Ethnic Background: White British.
So how often do you have to go for your injections?
Four a year. Once every four months. Now they’ve altered the type of injection you get. It used to be a long needle and a push but now it’s just all you hear is a click and it’s done. I don’t know what that is. I can’t see. So.
And after you have that injection do you have any side effects in the days afterwards or anything?
Well, it used to knock me out for a little bit, when I first started, for three to four days, but that’s worn off now. I just worry about my body becoming immune to it. That’s the effect, but if there was a concern it’s that, and it’s also a concern about the tablets that I’m taking. I’m concerned, that doesn’t bother me, but I’ve got it in the back of my mind that when my body gets used to that it’s time to get something done, but the way I am I’m okay.
So you mentioned that you know your PSA levels. Does your doctor take the PSA test?
Yeah, I have a blood test a week before I go for my injection, and it measures my PSA on that.
And then he tells you what the result is.
Then he tells me what it is, yeah, whether we’re going up or going down or whether it’s holding fast, and, yeah, keeps me informed.
And do you, how do you feel when you find out what the level is? Does it…?
Well, I get a bit concerned, naturally but I know he’s going to do everything he can and he will do everything he can. So that’s, I’m just confident, confident in him.
Some people experienced side effects from tamoxifen that they found difficult to tolerate, or had other complications, so they stopped taking it or tried other hormone therapies. One man took only Arimidex for 5 years. Tim stopped tamoxifen after 7 years when he had a blood clot in his leg (deep vein thrombosis) following a hip operation. Another man took tamoxifen for 3 years until he too had a deep vein thrombosis. Switching to Arimidex gave him side effects; he now takes Zoladex. Bill stopped Arimidex after 5 years then discovered he was lacking testosterone; he now has testosterone injections alongside Arimidex.
Symptoms of hormone changes
Hormone therapy side effects are the same as those of the natural female menopause. People we spoke to who had either received hormone therapy or had experienced early menopause due to cancer treatments reported a range of hormonal symptoms. These included hot flushes and night sweats, fluid retention causing swollen ankles or weight gain, memory problems, mood disturbances, reduced libido, and fatigue. Some postmenopausal women said that taking tamoxifen brought back their menopausal symptoms.
Carole is a retired teacher, and married. She has a son and a daughter. Ethnic Background: White British.
Sounds like it was a really hard time to sort of get through that.
It was because it affected, it’s awful. It affects everything. You see, I was having extremely powerful flushing every, three times an hour, every twenty minutes, and so much that often the perspiration would run down the backs of my legs into my shoes. You know, it was, it was really, really. And then after that passes you get this icy cold feeling that has to, you know, is as the perspiration, I suppose, as that all fades away and cools down, and at night, at night it was dreadful because I was just awake. I couldn’t get a good decent deep sleep. So I think this is how, you know, really I got out of, and it affected me without me realising it, I’d become very moody and irritable and…
But looking back on it, you know, it seemed, at the time, it seemed to be a long haul but when I look back on it I think that really it was a much shorter time than it felt, because I think by 1998 I was more or less back to normal, picked up the pieces and I was fine again. So I would say, maybe three years at the most that I was, by that time, I was still continued, you know, I’d stopped the tamoxifen but I still had a, you know, really rotten menopause, but by that time I was able to, it was controlled enough for me to be able to manage it. I still get hot flushes and night sweats. I said to the doctor once, “How long will this be?” And she said, “Well.” She said, “It’s different for each.” She said, “I’ve known women” - I was about sixty two or three at the time - she said, “I’ve know women who are still having hot flushes at seventy.” So I, “Ha ha ha.” I’m seventy one next month, so…
So I often think back to that, her saying to me, “Well, I have known women of seventy.” And I thought, “Oh, when will it end?” But it’s manageable now. I can wake up at night and fling off the covers and open the window and go back to sleep.
Age at interview:
Age at diagnosis:
David is an office administrator. He is married and has 2 children. Ethnic Background: White.
So, as I say, I carried on, it would be a case of once you get through your chemotherapy and your whatever else, you’ll be on tamoxifen, was the chosen drug. I know there’s all new ones on the market, but I was given tamoxifen, which didn’t do me very well. It blew me up, it just… I got all the, you know, the menopausal symptoms. Men aren’t supposed to have menopause but I had the night sweats where something… we were going through the night sweats together, so the bed was wet through. And we had the night sweats and the hot flushes and whatever else, and I was just getting bigger and carrying a lot of weight and fluid. My ankles were swelling up and I just said to my nurses and doctor, I said, “Do I have to have this?” And they went, “Well, you do, really, you’re supposed to be on it five years”, and I said, “This is doing me no good at all. Ain’t there anything I can change?” This… herceptin and all that lot were just coming on the market at that time and it were, “Well, no, this is the best thing for you, we’ve looked at it”. I said, “Well, what is it doing to me, you know? What is tamoxifen doing?” I said, “Cos I feel horrible”. And… well, it’s just the same as it is for… but for a woman it causes, you know, problems below, womb cancers and cervical cancer and whatever else. I said, “But what is it doing to a man? I ain’t got them bits.” And they went, “Well, you know…”, you do feel it affects other things as well as, you know, but we had a long discussion with the nurses and the doctors and it was a case of, “If you can get to two years with the tamoxifen, we’ll review it.”
So we carried on then, tamoxifen every day. Used to take it on an evening so you could more or less sleep off any symptoms, but oh, it just blew this thing, I mean, this is still blowing up and, you know, I used to be a 32 waist for years, but then I could get up in the morning and I’d be like a 36 waist, but by the end of the day I could be 38, 40.
It had just filled up with air and I’m just carrying all this lot around. It was horrible, and clothes-wise it was, you know, different pairs of trousers for different types of day. Really, really strange. Put it down to tamoxifen. It might not have been, but it didn’t happen before. Anyway, we got to two years with the tamoxifen and I just said, “Look, I am really struggling with this thing now, can we review it?” And they just went, “Yeah, we’ll have a look at it.” The next time I went to the clinic, it was stopped.
“Well, what do I need to take?” “Well… nothing. You don’t need to take anything. We have… looked into it and between me and you” - I don’t know if you want this on, but they just said that - “Between me and you, there’s no difference from taking tamoxifen for two years as there is for taking it for five years”. So are people taking tamoxifen for nothing, really, you know? I know a lot of people I’ve met through my journey is that they think it’s keeping them alive, but is it? I don’t know. I ain’t been on any drugs for two years, three years now, so… I’ve done alright.
Age at interview:
Age at diagnosis:
Tim is a retired oil company executive. He is married and has 2 adult children. Ethnic Background: White British (English).
You just mentioned about the sexual side that tamoxifen took away from your relationship with your wife, how was your relationship affected by that?
Oh yes, I mean it does inhibit you, it removes your sex drive, almost completely. Which was something that, it probably bothered me a bit more than her in a way. I think men generally, I mean the way we’re constructed, you’ve only got to go to the park and watch the stags, the way we’re constructed is, we would like to have more than may be available to us.
I mean when I see a lovely girl walking along I get the same sort of feeling. But as you might say, in the undergrowth nothing stirs. So it was a bit depressing. But as soon as one stopped the tamoxifen things recovered, I’m glad to say, reasonably well.
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