breastcancer.org/treatment/hormonal/new_research/20090825.jsp
Hello ladies,
I just read this information on breastcancer.org about tamoxifen and I am quite worried.
I’ve just read this in the paper too. BUT, I think the point is, IF you get a recurrence, it COULD be more aggressive. The tamoxifen makes a recurrence much less likely, so it is protecting you overall. The message coming out of the research is still that it is beneficial. All these treatments come with risks as well as benefits and I think the general agreement is the risks outweigh the benefits. There’s quite a good article on the telegraph website.
Thanks for that link salopets. I think is pretty good as you say. I am aware that no drug comes without site effects and there is a need to overweigth the beneficts and the possible unwanted effects. As a woman on tamoxifen I think for nearly 2’5 years now, I am quite concerned about this article, specially because I show it on breast cancer org website and I think they are quite serious
hi,
i heard about this on the radio today and as i understood it the risk with tamoxifen is when you take it for more than 5 years, which as cancer research said, is not the general practise here in the uk. they emphasised that the risks are far greater if you do not take it.
i for one will continue to take it,
love,
lenny
xxxx
Hi all i took tomoxifen for 10 years, 5 years after op and 5 years as a trial finished in april 2008. No side affects while taking it, i was only 37 when 1st diagnosed so was only 47 when finished taking it and still pre menapausal. I have just been diagnosed with another tumor in the same breast on the same site. I am told it is not a secondry cancer and they are treating me as a new case. had op to remove lump last week, going to get results tomorrow so i will know more, so i am very interested in this artical
Hi,
the shortened version of this article in the Metro scared my hubby today and the version on the radio scared my son. If you read the full article, by googling, it gives a lot more info. As Lenny says it is about taking Tam for over 5 years and the article I read said this was about 1000 women in the UK at present, which is a very small number of us. No comfort to them of course, so sorry anyone involved. It says tam reduces the risk of a recurrence by 60%, which is huge and the research was on only 1000 women. So a 440% increase might mean 5 women instead of 1 out of that 1000 and be quite a small number in reality. That is still too many women of course but probably a much lower risk than chucking your tablet down the plughole. Yesterday they had made a break through. Good news doesn’t last long does it?
Lots of luck everyone
Lily x
Hi friends i have only been on tamoxafin for 6 months no side effects so far i hope i will be fine Had a slight pain in the breast where the tumour was today i do hope its nothing to worry about heavenly
Hi Gingernut!,
Am really sorry about your relapse. Without doubts that is the biggest fear once you have been dx with any kind of bc. I just hope everything turns as better as possible for you. Let me know what happens with your new dx.
Love Happynipple
There is a report worth reading if you go to “home” on the top of page and click on blogs they give a good explanation of the article written in the papers which is causing a lot of scaremongery,I found it worth reading.Joyce
Hi Happynipple
just got back from hospital today and have been told i am to have targeted radiotherepy, not really sue whay that is, but have to meet the radiographer on 8th sept to explain, i am going to go back on tomoxefin and i will be monitored until i go into the change and then i will have a different drug. it seems that as my tumor was so small (6mm) i can have target radiotherapy and drugs. The lump was discovered by a fluke while having an MRI scan for another problem, i had finished with my local breast clinic, they had discharged me. my consultant had heard of a hospital in london that did MRI biopsy as the lump did not show on a mamagramm or ultrasound, so i was sent there and thats how is was dicovered that it was another cancer. I was the first patient they had sent to have one so it was all new to every one. very grateful they pulled out al the stops.
love gingernut99
heavenly, I think we all get stabs and jabs and pains at times. I certainly do. It could be scar tissue, also rads do something to the tissue as well and it shrinks a bit sometimes. Also nerves trying to connect themselves up I guess. I have been on tam 8 months and get them.
If you are worried you can ask for a check but they say wait 2 weeks on normal pains.
Thinking of you. Try not to worry it is probably normal.
Lily x
i also noticed it included women from age 40 to 79 however the under 50s are much more likely to get negative tumors anyway… i wonder how many of each age group were in the tamoxifen sample and how many in the comparison sample.
i think there are too many unknowns about this at the moment and would actually be more useful to read the original research study and not just the abstract or media sensationalist versions.
i am 41 and have been on tamoxifen for 3 years for a grade 1 ER +ve BC and this year got diagnosed with a grade 3 ER -ve tumor but will restart my tamoxifen after chemo… i dont think the tamoxifen caused the 2nd tumour but it didnt help prevent it… and until reliable research can actually provide this info thats my treatment plan.
for people of my age the 2nd cancer is the type of cancer they expected me to get the first time… but at the same time i think the 1st one may have saved my life… how many 30 or 40 somethings have annual mammograms? this is how my 2nd tumour was found.
gingernut good luck with your results.
Lulu x
cancercompass.com/cancer-news/1,16151,00.htm?c=1004:5:1:2
Another article, might be worth reading but I haven’t done so.
D
Hello Gingernut!,
There is nothing I can say to comfort you. I just hope you get the best outcome possible and the treatment is not very harsh on you but very effective. Am always worried about the possibility of having a relapse, that is my biggest fear and sometimes I wonder if is inevitable. I read about so many women with a very good first dx that after a few years get a recurrence that I wonder if there is not way out.
All the best and let me know if there is anything I can help you with
xxx
Hi Lulu34!,
I’ve been reading your post and I have to say that scared the shit out of me. I can’t understand how with such a good dx as you seemed to have 1 ER +ve BC you got a 3 grade recurrence. As I say b4 I wonder if recurrence is unavoidable.
All the best and take care
xx
lulu, so true what you are saying about 30 and 40 year olds getting mamograms after being diagnosed, it makes you wonder if they should reduce the age like in Amercia to 40.
you are a wee inspiration to others on this forum.
Carol xx
sorry to have scared you happynipple
my grade 3 isnt a recurrence its a new primary tumour… im just basically unlucky… its a bit like getting breast cancer then a few years later getting gall bladder cancer… there is nothing about the two i have had that are related.
younger women are more likely to have grade 3 tumours and more likely to have hormone negative cancer which mine was… infact from my understanding i was quite a rarity to have had a grade 1 cancer at the age of 37.
most people in my situation grade 1 stage 1 er + tumour wouldnt have a recurrence or even a new primary i am in the minority not the majority to try to take heart from that.
the current tamoxifen research still shows it much more likely to prevent cancer than cause it, it also shows that only those who have been on it for over 5 years are at the increased for the TNBC… but there always exceptions to every rule and as lily said that they dont say how many people developed another cancer it could indeed be a very tiny amount.
can i give you an example of statistics can scare the hell out of you… i work as a sexual health nurse and about 15 years ago there was a similar article published about some pills causing 50% more blood clots than other pills… in reality this was 15 women in every 100,000 (one hundred thousand) would get a blood clot from one pill and 30 in 100,000 in the other which was double but they didnt give the figure… also what they didnt tell you was that women who were pregnant the risk increased to 60 in 100,000 … but what happened? women were so shocked about dying from blood clots they stopped taking their pill and got pregnant.
telling you that you risk increases from 15 to 30 in 100,000 doesnt sell papers but saying it has a 50% increased chance of giving a blood clot does.
lulu xx
Hi everyone
I had 1st bc in 1997 - grade 1, stage 1 er+ive and had a 12 year remission after mx and tamox for 5 years. I’ve now got a different scenario, grade 3 which is being treated as recurrence, but the bottom line is, I have never, at any point, reflected ‘trends’ or met research expectations.
Research and associated articles only tell us about broad sweeping pictures and refer to averages and might be useful for strategic planning etc, but often bear no relation to the reality of individual circumstances. I stopped reading research articles about 10 years ago because I found they worried me pointlessly and I wanted my life back.
What I did was learn to know my own body, and I found my own cancer again, second time around. For me, knowing your own body gives you more control and is your great strength.
Hope that helps a bit - at least its a longer term perspective
monica xx