I've been on Tamoxifen for 4 years now. However, to be honest, I stopped it several months ago for a break. I've done this before and inevitably, I get some spotting which leads me to have a pelvic ultrasound. I also needed a well overdue pap test and routine blood tests. Now don't you just love it when you go for routine checkups and come out with all sorts of issues you never knew you had! Now it is at this point I'm going to blame it all on poor ol Tamoxifen. I have found out a few things that it can do to you over time. I sure wasn't told about it at the start of taking this drug. One of my liver enzymes was raised and I now have a fatty liver. I rarely drink alcohol so my gp is putting it down to Tamoxifen. I also have changes in my Endometrium(cysts) which is a "given" when you are on Tamoxifen apparently. My hair started thinning which is another Tamoxifen treat. So I am blogging about these issues, not to alarm, but rather to make you all aware that Tamoxifen MAY cause changes to your liver and uterus over time. I think we should have yearly blood tests and pelvic ultrasounds and possibly abdominal ultrasounds. A fatty liver can lead to a chronic inflammation condition which could then cause liver impairment. This is enough to make me question whether to keep taking this drug for another year. Back in 2003,Tamoxifen was usually prescribed for 2 years. Now it's for 5 years with a view to increase it to 10 years. I know it's a very effective drug against hormone positive breast cancer but I worry about the long term side effects. Is 5 years on Tamoxifen going to impact on my health? Just at a fork in the road. Hugs to all who are online tonight. xxxx

Hi Tonya, Omg!!!! I have been trying to find out more about this drug since i was told over the phone to go on it without any consultation but was concentrating on the current side effects. The long term ones were glossed over with the benefit far outweighing the risk. Good luck to you and thanks for the heads up.I started it 3 days ago. My oncologist has some serious questions coming his way. Nicole

Hello Tonya.I was reading up last week on side effects,and apparently,a fatty liver is not that uncommon.Isnt that what a person who drinks too much alcohol can suffer from? My oncologist does send me for an internal ultrasound every 12 months.I had one at the beginning,and I have another one booked just before Christmas.In the beginning,I didn't think a lot about side effects,but lately I am starting to think that if you stay on these types of drugs long enough,it seems that you will get some sort of side effect.Like you said,it used to be a couple of years,and now they are stretching it out to 10!!!!This is a good subject,and definitely one that I feel we aren't really told much about.Cheersxox Robyn

Thank you, Tonya, for raising this issue. Yes, it is fine for them to say the benefits outweigh the bad bits but it is not them having to deal with it all on a daily or long-term basis, eh ? I see an oncologist next week and have been trying to find out more of the long-term effects of the drug before I go. My surgeon did not seem at all impressed with hormone therapy so I will have to listen to the oncologist and ask heaps of questions. As you say, 2 years is one thing but 10 ????? Sometimes I feel the medicos just keep things going for the sake of the pockets of their mates and chemical companies ! The alternative drugs are no better for my circumstances. I do have severe arthritis and will need knee and hip replacements (surgeon wanted to do knees 4 years ago) so the idea of possible osteoporosis does not appeal ! If anyone else has some info for us all it would be appreciated. Hi Robyn - good to see you still posting regularly. You are always so helpful and positive. Hope all are feeling well and happy on this glorious day in Victoria. Summer

Hi Deanne I am taking another break from the cleaning chores - after all these years I have learnt to 'pace' myself (!) so have been checking emails. Thank you for your input. I agree. If there is a test to determine a woman's likelihood of getting hormone related breast cancer and any other types then surely they should at least be offered ? I had my normal Breastscreen mammograms from the age of 50-62. At 60 all clear. At 62 they found 63% of my breast had high grade cancer so off it came - I was given no choice. Maybe they should offer annual screening ? Even if they charged a nominal fee for the 'in between' screening I do think most women who attend Breastscreen would agree to pay. Your post, and those of the other ladies, have given me some questions to raise with the oncologist. Thank you. As I have only just finished with the menopausal hot flushes I am not keen to start again ! If your female GP says it is OK and you trust her then leave the pelvic ultrasound - BUT - if you are like me and prefer to be proactive then have it early before something is really wrong. I had an emergency hysterectomy in 1997 so I guess this won't be an issue for me. Have a happy day. Summer

4 years on Tamoxifen | BCNA Online Network

14 Replies

TonyaM
Member
11 years ago
Sorry to hear about all your food intolerances.I too,seem to becoming more sensitive to some foods.I have been researching 'fatty liver' and apparently,in this condition, the liver struggles to metabolize foods/drinks/drugs.This can lead to substances leaking into the bloodstream and causing the immune system to over react.It's all abit of a worry isn't it.Fortunately I can still enjoy abit of chocolate. Take care, Tonya xx
Leonie_Moore
Member
11 years ago
Hi Tonya, Good to be back online and chatting with you. When I was on Tamoxifen, I was always having breakthrough bleeding. My uterus was full of fibroids and my Gyne (RIP) prayed for me to go through menopause. I have now been on Arimidex for nearly 4 years since the secondary bc diagnosis. Who know what it is doing to me. I do know that I have chronic food allergies/intolerances that I am trying to sort out. One way to lose a lot of weight!!!. I am eating very basic food - whole foods, very little processed food, fresh fruit and veges , meat and fish - boring. I have been tested and I am intolerant to beer (big loss), tomatoes (that I use a lot), strawberries and loads more. Always had the gluten, lactose and sulphur intolerances which are now really heightened. What is the alternative to these meds - luck ?? Not sure if I have much of that left BC robs us of all the little luxuries - all in moderation. XLeonie
Leonie_Moore
Member
11 years ago
Hi Tonya, Good to be back online and chatting with you. When I was on Tamoxifen, I was always having breakthrough bleeding. My uterus was full of fibroids and my Gyne (RIP) prayed for me to go through menopause. I have now been on Arimidex for nearly 4 years since the secondary bc diagnosis. Who know what it is doing to me. I do know that I have chronic food allergies/intolerances that I am trying to sort out. One way to lose a lot of weight!!!. I am eating very basic food - whole foods, very little processed food, fresh fruit and veges , meat and fish - boring. I have been tested and I am intolerant to beer (big loss), tomatoes (that I use a lot), strawberries and loads more. Always had the gluten, lactose and sulphur intolerances which are now really heightened. What is the alternative to these meds - luck ?? Not sure if I have much of that left BC robs us of all the little luxuries - all in moderation. XLeonie
Leonie_Moore
Member
11 years ago
Hi Tonya, Good to be back online and chatting with you. When I was on Tamoxifen, I was always having breakthrough bleeding. My uterus was full of fibroids and my Gyne (RIP) prayed for me to go through menopause. I have now been on Arimidex for nearly 4 years since the secondary bc diagnosis. Who know what it is doing to me. I do know that I have chronic food allergies/intolerances that I am trying to sort out. One way to lose a lot of weight!!!. I am eating very basic food - whole foods, very little processed food, fresh fruit and veges , meat and fish - boring. I have been tested and I am intolerant to beer (big loss), tomatoes (that I use a lot), strawberries and loads more. Always had the gluten, lactose and sulphur intolerances which are now really heightened. What is the alternative to these meds - luck ?? Not sure if I have much of that left BC robs us of all the little luxuries - all in moderation. XLeonie
Janet_Plummer
Member
11 years ago
I can certainly understand your concern Tonya with that family history. I suppose the other option we have is the aromatase inhibitors (or was there some reason you can't take them?). But almost everything I've read about them makes them sound even worse than tamoxifen. I'm not too keen to go down that path either.

Interesting that you can have a fatty liver and it is not always detected by a liver funtion test. I guess all I can do is keep exercising like a mad women, eating my vegies, drinking my green tea (avoiding the chardonnay) and takining my vitamins. I'm also taking 'liver detox' pills most days too for what it's worth. Apparently the milk thistle in them is good for the liver.

In case you're interested I get order my DIM online from a company in the US called BioResponse Nutrients. When I was reading about the Uni of Arizona study a while back, it indicated somewhere on their website that the researchers got the DIM from there so I thought it would be reasonable to trust that company. I actually get the prodcut they call Breast Balance which has some vit D, selenium and iodine in it as well - all nutrients commonly found to be deficient in BC patients. It's a bit pricey, about $48 I think for two months worth but I feel it is worth it.

Good luck Tonya. I hope you stay well. I have read that the liver is able to repair itself as long as it's not too badly damaged. Hopefully yours will quickly come good without the tamoxifen.
TonyaM
Member
11 years ago
Yes,it's a worry isn't it- a fine line we tread.Liver function blood tests can be still normal and you could have a fatty liver.An abdo ultrasound will pick it up though.I rarely drink alcohol so I'm sure it's Tamoxifen- especially after being on it for 4 years.I'm very concerned now and have decided to stop this drug.My poor mum recently died of liver cancer(never drank) and so did her mum and her uncle.So there is a bit of a family pattern going on.I think I will look into DIM.You always write an intelligent post Janet.We need to research and push for answers.I know my doctors won't be too happy with me but,like you,I don't want my liver to die on me. Tonya xx
TonyaM
Member
11 years ago
Yes,it's a worry isn't it- a fine line we tread.Liver function blood tests can be still normal and you could have a fatty liver.An abdo ultrasound will pick it up though.I rarely drink alcohol so I'm sure it's Tamoxifen- especially after being on it for 4 years.I'm very concerned now and have decided to stop this drug.My poor mum recently died of liver cancer(never drank) and so did her mum and her uncle.So there is a bit of a family pattern going on.I think I will look into DIM.You always write an intelligent post Janet.We need to research and push for answers.I know my doctors won't be too happy with me but,like you,I don't want my liver to die on me. Tonya xx
TonyaM
Member
11 years ago
There are 2 types of fatty livers- the alcoholic one and the nonalcoholic one.The non one can be caused by obesity or certain medications-Tamoxifen being one of them.I have never been a drinker(only occasional)so I 'm putting my liver issue down to Tamoxifen.A fatty liver (non alcoholic)can recover over time with a healthy diet and ceasing the offending medication.But if it progresses to inflammation and then cirrhosis(even cancer)your liver won't be able to function properly.A fatty liver is best picked up on an abdominal ultrasound because liver function blood tests can still be quite normal.However,my bloods were elevated so hence my GP sending me off for an abdo ultrasound.My poor old mum never had a drink and she died of liver cancer- probably why I've become paranoid about my liver! xx
Janet_Plummer
Member
11 years ago
It's such a difficult decision isn't it. I don't have any major side effects although co-incidentally I was just thinking today how crap my hair is looking. (I was even googling foods to eat for better hair.) It is nowhere near as thick and lustrous as it was prior to BC. I've been attributing this to a hangover effect from chemo but maybe it's due to tamoxifen which I've been on for nearly two years now.

I was aware of the potential for getting a fatty liver. My oncologist was very dismissive of this issue when I questioned her about it before starting on tamoxifen, virtually said fatty liver wasn't a side effect even though it was mentioned in the tamoxifen literature she had given me to read. I really don't trust all that she tells me as a result. I think she just wants me to do as I'm told and not question her decisions.

However, I am very wary of the liver problem as I have been told that my aunt (by marriage) who was treated with tamoxifen for breast cancer died of liver failure (she was cancer-free). My aunt was obese so I expect her liver wasn't in such good shape to begin with but you would think her doctor would have taken this into account before presecribing long-term tamoxifen. Afterall what's the point of avoiding breast cancer recurrance only to die of liver failure? I've read other material online too that says tamoxifen can be very damaging to the liver.

I plan to have a liver function test when I reach the two year mark. If there are any issues I may consider going off tamoxifen myself. I might also ask my gp if I can get a pelvic ultrasound done. That's another whole can of worms I haven't really thought much about yet.

I have mentioned here a number of times that I am also taking DIM a substance derived from cruciferous vegetables (broccoli, kale, cauliflower etc) which is thought to minimise estrogen in the body. My thoughts are that if it starts to look like tamoxifen is doing too much damage to my body I will go off it and perhaps increase my DIM intake. I know it's not a "proven" alternative but there does seem to be quite a bit of research suggesting it has a protective effect against hormonal cancers. There is a clinical trial underway at the Uni of Arizona into the effectiveness of tamoxifen alone compared to tamoxifen taken with DIM. When combined with a healthy lifestyle - lots of exercise, plenty of fresh fruit & veg, minimal alcohol, minimal stress - it may prove to be a healthier alternative. Livers are pretty damn important for our overall health. I don't particularly want my stuffed up by tamoxifen.
June1952
Member
11 years ago
Hi Deanne

I am taking another break from the cleaning chores - after all these years I have learnt to 'pace' myself (!) so have been checking emails.

Thank you for your input. I agree. If there is a test to determine a woman's likelihood of getting hormone related breast cancer and any other types then surely they should at least be offered ?

I had my normal Breastscreen mammograms from the age of 50-62. At 60 all clear. At 62 they found 63% of my breast had high grade cancer so off it came - I was given no choice. Maybe they should offer annual screening ? Even if they charged a nominal fee for the 'in between' screening I do think most women who attend Breastscreen would agree to pay.

Your post, and those of the other ladies, have given me some questions to raise with the oncologist. Thank you.

As I have only just finished with the menopausal hot flushes I am not keen to start again !

If your female GP says it is OK and you trust her then leave the pelvic ultrasound - BUT - if you are like me and prefer to be proactive then have it early before something is really wrong. I had an emergency hysterectomy in 1997 so I guess this won't be an issue for me.

Have a happy day.

Summer