Gosh this has been a really difficult thread for everyone, I can so understand all that has been said as my hospital have never told me anything about my ER status still to this day do not know, but have been on Arimidex for 2 years now. The side effects when i first started it were truely horrendous, sweat, i never stopped, i used to have them every 20mins through the day and night, my life was in danger of being permanently impaired as i could not leave the house without a change of clothes it was that bad, and the chills that followed the sweats was worse! I did perserve with it though as my family were adamant that i should and i must say that 2 years on with the help of clonidine 100mg they hardly have an effect on my life at all, I remember the pharmacist who was on Tamoxifen saying to me that they would not be there forever and would lessen in severity but i did not believe her! She was telling the truth!
To take hormonal therapy can only be your choice, we can tell you what we have been through but only you can decide what you want to do with your body. I have a friend diagnosed a month before me and she refused any hormone therapy, she is fine and getting on with her life, was she brave or foolish, she did what was right for her and that is all anyone can do, her family supported her decision and that was the most important thing any family can do.
Whatever you decide i wish you all the luck in the world and a very happy and healthy life.
Thank you Suzy! I also wish you the best of lucks! I am so sorry to hear what you have been through… even if I decide to undergo HT I know I am not ready yet. Still in pain and extremely tired, and still feeling the side effects (although mild by comparison) of having stopped my HRT.
Does anybody know how I can find out how positive my ER is?
Thanks again to all those who have come forward with your advice and experiences!
it tells you the incidence of endometrial CA… which is less than 10 in 100,000 but can increase to 6 times as much ie 60 in 100,000 but compare that to your risk of BC at about 1 in 10… it maybe worth your while to go with the tamoxifen.
if your bone density is already decreased then continuing with letrozole might not be ideal but from all the research iv found it only gives an increased risk of osteoporosis at 11% ie 11 in 100 still less than the risk of getting BC and you can counteract reduced bone density by increasing calcium and stopping smoking.
but obviously you have to weigh up all the pros and cons for you personally.
Thanks Lulu, will look at that link. But I do not smoke and have been taking calcium for quite a while. I was not told my chances of getting it again are 1/10 but for what they told me they seem to be less than that… I’ll have to get the figures clear, particularly the E receptiveness to make up my mind. This thread has been very useful for me and I hope for other people too.
the 1 in 10 is the life time chance of BC… so your actual risk of recurring usually… you may never get a recurrence or a new tumour just like you may never get emdometrial CA or osteoporosis… all i was trying to pint out was that the risk of BC is way higher than the risk of endometrial CA even if you are using hormonal treatment.
eg at age 50 the chance of getting bc is 1 in 50. at 40 its 1 in 2000 and at 30 its 1 in 1900… the breast cancer is the thing you are most likely to get and perhaps its best to look at the cancer you do have than one that you dont have… but ultimately its up to you.
i dont know your specific circumstances but for me my chance of dying from BC is approx 12 in 100 within 10 years and risk of recurrence is about 17 in 100 over the next 10 years… much higher than the risk of endo ca.
btw if you ask your BNC she can look up your path report and tell you how positive your ER status is.
this link (may) be useful re recurrences and percentages…the 2nd half, Ongoing risk, deals with stats in relation to choices taken for treatments. x lifeabc.org/risk_recurrence_more.html
Thanks Belinda! Very interesting… I am still worried that my Pathology report makes no mention of HER2 or ER status…could they NOT have tested that? It would be terrible!
Your er, pr , her2 status have to be sent away to be tested.
They probably have not received the results yet.
Some people complain about waiting a while for their results.
Thanks Julie, that is encouraging… why did they jump the gun then and put me on Tamox for 5 years? (I am not asking you of course!)… hope they give me the results when they are ready so I can have a more accurate idea!
My main pathology report doesn’t include the ER, PR and HER2 results because it was written immediately after my surgery and before these results were in. By the time i actually got the results a week after surgery the ER/PR was back so I was actually told that at the same time. The HER2 was much later.
Not that this helps but I think it is totally shocking the length of time that some people are waiting for results. I got a full path report which included ER PR and HER2 results(they test the original core biopsy sample for that) ten days after surgery, now if they can do that in North Wales why on earth can’t they do it everywhere else !
Good luck with the tamoxifen,I know that there are plenty with side effects but I’m the flip side of that ,been on it since April and have been fine and dandy ! Oooooh or maybe it’s not working ! Lol, can’t think about it all too much or my head will explode !
Hi girls! I have not been in touch for a couple of days because I feel very tired and had other problems. My BCN gave me those results and it turns out I am
HER2neg
ER+ 198
PR +
I was prepared to start on Tamox (could not go to buy it yet due to reasons mentioned above)… but then I have read paramenters that indicate
there does not seem to be much difference in chances between taking and not and
apparently starting with the so called aromatase inhibitors has better results.
I have left a message for my BCN and will talk to one of the advisors from these site. The problem is that even if I decide I want to go on those it might take me a long time to get a prescription.
Has anybody tried these AI therapies? Do they all pose a danger for your bones? My surgeon mentioned this, but I have not read it as part of the side effects…
It has been interesting reading your thread. I have been on Tamoxifen for 9 months now, and ‘touch wood’ I have not suffered very badly from side effects as yet, some hot flushes, changing moods, dry skin and hair,. Because i am only 36, I assumed that it would immediately stop my periods - but it hasn’t. My cycle remains more or less the same. ‘New’ s/e in the last week are the first signs of anything happening. Vaginal dryness! Leading to sores! Not nice!
What I am interested to ask you all is - I will be on tamox for 5 years. When I stop taking it do all the s/e just suddenly stop and i go back to how i was pre tamox? No one medical seems to be able to directly answer my question!!
That’s an interesting question Heidi! Let’s hope someone has the answer because I do not.
Leadie, if you are following this thread, I wanted to say I cannot send any PMs because the links do not work. despite Bernie’s efforts with my cookies! So if you want to write to me you are most welcome!
Diagnosed 3.5 years ago. 8/8 oestrogen positive. Was given mastectomy and immediately put onto Tamoxifen and Zoladex injections to stop menstruation. After 16 months of Zoladex I opted to have my ovaries out. Last December I was diagnosed with thickened endometrium although not cancer. By this June it HAD turned to Endometrial cancer even though I had stopped taking the Tam in early Feb myself as I was worried. So in July I had a hysterectomy.
So, two cancers now, and my dilemma is my gut instinct is not to go back on a drug that my body obviously didn’t like, but I tried the Ai’s after my oopherectomy for 4 months and that year lost 6% of bone in my spine and developed osteoporosis.
Now I don’t know what to do. I am between a rock and a hard place with anti oestrogen drugs. I could take the Ai’s and have Zoledronic Acid but these are relatively new and my bones ache enough already!!
I have osteoporosis from the AI’s too. I had already had a hysterectomy before bc but no zoladex but have had it before for endemetriosis.I also could not stick the AI side effects. I am now on tamoxifen. Sorry to hear you are in such a dilemma with treatement Gracet. If tamoxifen has bad side effects and I cannot take it my oncologist has suggested not having anything. She said it raises my rate of recurrance but she said quality of life is important too but I know with you it is dangerous because of the endometrial cancer. There are progesterone treatments like falsodex instead of the AI’s and tam. I would speak to your oncologist about other options. I think there maybe other hormonal treatments as well.
Hi Nikiya,
I have been on Arimidex (Aromatase inhibitor) for 3+ years now. The manufacturer is Astra Zentac (sp) if you go to their website they will list SEs.
Bones and blood clots are their “dangerous” SEs. Whether bones will be affected, would probably be determined by your current bone condition. (For instance before diagnosis, my spine was above normal range for a young adult. Therefore good for my age.)
Other factors include a)being underweight currently and at age 25 b)whether you do load bearing exercise C) calcium and vitamin D intake
So if you have good bones to start with, are not underweight now or when in your 20’s, exercise and take 1,500 mg calcium and 1,000 IU Vitamin D you would have, I assume, less risk.
However simple these things might sound, Arimidex can cause fatigue - so exercise gets skipped and remembering to take calcium pills can be an issue.
Here is a link to a report that I found quite informative. It’s called: SIDE EFFECTS REVISITED: Women’s Experiences With Aromatase Inhibitors.
Hi Nikiya
Just read this and had to tell you my story…not to worry you but just to say that everyone is different. I had a low grade 1 but because of location had my breast removed and a few lymp removed. Breast nurse said i was in the good group…if there can be one for not get it back again. I had rads to breast area/tam tablets and off i went.Tam caused me problme with my womb so ended up with my womb being removed.
Under two years later my cancer came back in my lyms back of the neck. This time chemo / ovaries zapped as well and thankfully have been in remission for 3 years.
No one person is the same so you must do what you think is right for you but do take advise. I wish that i had pushed for different treatment at the time and asked more questions…but hine sight is a great thing.
Oh dear! we are indeed between a rock and a hard place. Grace, I am so sorry to hear of your ordeal. Of course we are all different but statistical fodder anyway like a friend and fellow BC victim says. I wish I had some advice to offer but, as you see, I am at a loss myself.
Snow, thanks a lot for your info, very clear. Unfortunately I am 59, my BMI is 18 and have been doing very little exercise due to suffering from CFS which has worsened after stopping HRT. I do take calcium but regrettably nobody prescribed it while I was pregnant of breastfeeding my two children, despite the fact that I have always been small.
I was diagosed with osteopenia long time ago but never had another scan and now have to wait for two months after requesting one when I saw my oncologist. So it sounds as if AI is not for me. I will look at the link, thanks!
Lupin, I am also sorry for what you had to go through but at least it seems you are stable now. What would you have done differently? And if I may ask, was your BC ER+ the first time, and how about the second? How old were you when diagnosed?
I wish there were clearer statistics about the benefits and dangers of HT, but it does not seem to be the case and all these stories make me even more weary of popping a pill without conviction.
Grace