hi there, I just did a search "another 5 years of AIs" because my oncologist signed me off yesterday and said to keep on taking the arimedex for another 5 years. Blessing, you said your doctor did a blood test first...mine did not. I wonder if I should request one. How are you feeling, have you stayed on tamoxifen or have you switched to AIs?
I have mixed feelings about staying on this med: first of all, I should be glad it's keeping me alive - If indeed it is...BUT I was hoping to stop. I am convinced the extreme tiredness and sometimes dizziness I feel are due to this med. Not to mention the risk of osteoporosis. I had read that AIs were often stopped after 5 years because of "diminishing returns" so I really was convinced I would be stopping.`
My oncologist explained that women who have been on tamoxifen for 5 years are now often put on AIs and they have a better rate of survival. But the reverse has not been proven (from AIs to Tamoxifen), so he prefers to keep me on the AIs. I feel like a bit of a guinea pig here...
Some people express their gratitude at being alive 5 years on, and I too am grateful. I just want to feel better for the next 5,10,15, or 20!
I did wonder whether there would be any policy to recall patients. One thing my Onc did ask me was about side-effects. I suppose for some people their quality of life is very poor on Tamoxifen. When I stopped mine nothing happened for 2 months, then I had 2 periods and some very brief relief from symptoms. Then, more or less, everything came back i.e. hot flushes, dryness; so, maybe it is the menopause as well as Tamoxifen! I have been back on it 3 weeks - only thing I've noticed is more hot flushes but theyr'e not that bad.
I should find out something about the hip today - theyr'e having a little conference about it - options would be to do a different scan I think. Otherwise, they will just rescan in 4-6 months as per the radiologist's advice.
Hello there Pauline.
Sorry you find yourself posting again with the possibility of a pesky bone met. As you say there will be lots of women who have stopped taking Tamoxifen in the last 12/24 months who could be offered the option to restart. The ATLAS did show longer protection from recurrance where Tamoxifen was taken for 10 years rather than 5. I guess it would take a long time if hospitals were to try recalling all patients and i suppose we are treated with what is the best practice at that time. I know a few people who should have been stopping very soon after 5 years but they have been extended to 10 years.
One friend asked her GP almost 12 months after she finished taking Tamoxifen and she is back on it, he reckons it is worth recommencing for the benefits. I am at one of The Christie (Manchester) satelite centres and my Onc told me when i commenced July 2013 that it would be for 10 years.....
Hope you can get your results very quickly on the hip.
Take Care Gilly x
I was diagnosed 2007 with a node positive (4/7) 1.3cm grade II her2 postive and ER/PR positive BC. Part of my treatment was 5 years Tamoxifen which finished in September 2012 when I saw my Onc's registrar. As I was not post-men there was no chance of AIs. However, I had to go back to my Onc in December 2013 due to various pains and ended up having a PET/CT scan. This showed lots of arthritis but also mild uptake in my right hip - at the moment they dont know what this is but there is a possibility it is a bone met.
However, my Onc has put me back on Tamoxifen for another 5 years - she said she was doing this not because of the possible bone met but because it was now accepted that this was best practice because of the ATLAS trial which shows better survival and none recurrance rates with 10 years. This is despite the fact I have not taken it for 15 months. I suppose what I am thinking is that I have only got this extra 5 years because I happened to go back - there must be lots of women out there in my position who have not had to go back to see their Onc!
No interestingly i paid as normal for my check ups etc. When the Dentist said that in his opinion and experience the Chemotherapy affect Saliva glands leaving you prone to an increase in decay and subsequent treatment he did acknowledge that NICE guidelines don't particularly recognise this.
I guess if it was formally recognised there would need to be some inclusive / free treatment but having had the Chemo which did dry up all bodily fluids and mucus membranes i would agree with him.
Take Care. Gilly x
For a number of years now Breast Cancer patients receiving treatment have been entitled to Free, non means tested, Prescriptions. It was the Pharmacy at the hospital who told me when i was having Neo Adjuvant Chemotherapy as i needed Steroids , mouthwash, eyedrops etc etc..... My GP didn't have the form HC1 (Dark Blue A4 size form) so i had to ask DWP for it. It only took about 2 weeks and they returned my exemption card. It lasts 5 years following which you request renewal as long as you are still being treated. I did think it may only be Prescriptions relating to the Cancer treatment but all prescriptions are free.
I just happened to have Dentist check up at the start of Chemotherapy, Dentist asked the healthcare questions and when i told him i was having Chemotherapy he said that he thinks it can damage Saliva Glands, may make me prone to tooth decay due to lack of natural Saliva and recommended i use a Fluoride Gel to clean my teeth. I expected to be hit with a bill for this on the way out but i was given a prescription for 3 tubes Colgate Duraphat (approx 3 months supply) and i just have to ring for repeat when i run out. This was also free of charge when i collected it from Pharmacy. I have seen the Dentist 3 monthly throughout treatment and he said that my teeth / gums haven't suffered too badly and he wants me to continue using Duraphat indefinitely.
It is amazing the difference in treatments / opinions in different areas but one things is consistent and that is that you shouldn't be paying for your medication.
Take Care Gilly x
Just for the record in case it helps anyone else; I was diagnised at 43, so most definitely pre-men; Grade 2 60mm tumour but no lymph spread thank goodness. Had mx, chemo, rads then Tamox for 5 years. Have just had 5 yr point check by Onc and, without me asking, he has extended this to 10 years due to proof from ATLAS study. I asked if there was any way of knowing if or when I'll go through the natural menopause and he said "we could do a blood test but due to you taking Tamox the results will be all over the place".
Lots of love to all xx
You need to ask your doctor for a form to fill in and then you should get an exemption certificate. It is bad that no one told you about this - it's one of the few silver linings in the clouds, not having to pay for prescriptions! It is bad enough having to pay for special bras, swim prosthesis, special swimming costumes etc!
If Tamoxifen is presribed for ten years, I wonder if our exemption from prescription charges will be extended from 5 to 10 years. Just a thought...