I was told when dx back in 05 that I was only slightly hormone receptive and not HER2. I am wondering if anyone else has been told this and if so then what info you can tell me about it. I know it must seem odd to be asking this now but I feel I need to know for so many different reasons.
Any info from any ladies that may also have been told this would be fantastic.
Neenie xx
I was dx in Jan and was told in Feb that I was er+ but HER2 negative. I did not know to ask at the time what percentage of er+ I was - I was, and still am, quite ignorant about BC at the time.
On my last visit to the onc (post rads check-up) the registrar was concerned about my ovaries still being active despite being on tamoxifen - she went to check to what level I was hormone receptive and reported back that I was 5%. They are giving me 2 months to see if the tamoxifen stop my periods and if not they will thrown in a monthly injection to shut down my ovaries. Again I accepted the information without asking any relevant questions (I didn’t know what to ask!) but I did use the Ask the Nurse facility on this site days afterwards. I was unsure of it was better to have a higher or lower %age - the bottom line was that those with higher %ages tend to respond better to the tamoxifen so being just 5% is probably why my periods continue.
Do you have any specific questions about being only slightly hormone receptive or are you just looking for general information?
Hi
I am basically trying to find out more as I moved to Northern Ireland form England a year ago so have had to change Doctors, Onc etc. I am under a General Surgeon, no oncs etc and to be honest they don’t have much info on me at all and keep asking me questions on my appointments which is a little worrying. They said they have received my notes but that they are very minimal as is common when medical notes are transfered (I dont know why only minimal notes are sent, I would assume all notes should be sent especially regarding anything relating to cancers etc.)
I was originally given tamoxifen which I stopped taking (not long after starting on it mainly due to severe depression due to other major problems all happening at once). I have asked would it be beneficial at my stage to go back on it and no one seems to know.
I also ask as I would like to know if I was to get pregnant how dangerous it could be or would it be ok to carry on with a pregnancy with regards to hormones and also possible prognosis etc.
Any info would be interesting and very much appreciated.
Neenie xx
I would have assumed that all your notes would be transferred, but obviously not. I would enquire with your original hospital if it is possible to get copies of them and pass them on.
I have been ok so far with tamoxifen - a few side effects but not enuff to make stopping it a consideration. I can’t say whether or not going back on tamoxifen would be beneficial or not but perhaps someone else will know the answer to this.
With regards to the pregnacy question I was strongly advised - in fact it is mentioned at each onc appointment - that it would be a very bad idea to get pregnant (given that I am approaching 41 and my son is approaching 19 I don’t plan to get pregnant anyways). The last appointment I had (just over a week ago) the registrar said that if I was to get pregnant whilst on tamoxifen it could case damage to a feotus - but also that if I was to get pregnant the increased oestrogen could cause the tumour to return. To be honest I am not sure if the risk of another tumour was if I got pregnant and was still taking tamoxifen or if this was just if I got pregnant.
If you are considering getting pregnant obviously you would want to know the risks beforehand - if you can’t get definative answers from the medical team you are under now then I would recommend you use the ‘ask the nurse’ service on this site.
Thanks for your replies lillacblushes. I will deffinatley have to phone my previous hospital and ask about my notes and will try and use the ask the nurse on this site.
No one has ever mentioned pregnancy to me and I am curious as my partner keeps it to himself but I know he would love a baby. I started to think about it but worry about rocking the boat as I am doing well and now nearly 3 years post dx. Woooohoooo yey! I was wondering if being only slightly hormone receptive could be a good or bad thing with regards to prognosis and possible risks of reocurrences and also pregnancy. I really wish I had thought to ask all these questions at the time! Ignorance in my case is deffinatley not bliss.
Neenie xx
I thinks it forgivable that you didn’t ask the questions at the time - as none of us really gets forewarning before we get BC we all basically go into it knowing little to sod all about what we should ask. I’ve actually found this site very handy for learning what I need to ask … there have been a good few occassions where someone has asked a question and I’ve thought ‘oh I should have asked about that’.
Would it be possible for you to speak to your original oncologist or even BC Nurse at the hospital where you got your treatment - I’m sure they would be able to answer your questions for you or at least point you in the right direction.
I’m surprised that no-one has mentioned pregnancy to you - I actually had to sign a declaration on my 2nd visit to oncology that I had been advised and understood that I should avoid pregnacy … to be honest I can’t remember if this was with regards to the tamoxifen they were issuing or the rads that were being ordered … so much tends to happen all at once and so the minor technical details often get a bit fuzzy … my son says it’s cos I am old!
Hi Neenie,
Bit similar to you in that I have some unaswered questions really - I am HER-2+, ER- and PR+ (89%). Have finished all my treatment bar tamoxifen. Have been told I am in a small group of women to be ER-/PR+, will get benefit from tamoxifen but that’s it no more info and I can’t seem to get much info from the internet about it either. Frustrating isn’t it. I was dx in May 2006 and am still wondering.
I also have 2 micromets (less than one millimetre in total size) in one lymph node and I can’t seem to get much info about this either. Have found some trials that are doing retrospective testing re micromets but don’t know how much this will help me because treatments have changed so much and the testing is being done on tumours from at least 15/20 years ago.
Also for me with the micromets, I didn’t have a full clearance and what I don’t understand is I remember my surgeon saying that if he found any trace of cancer in the nodes I would have to have a second op, yet he found 2 micromets but I didn’t have full clearance - still chewing over this as well.
With regard to pregnancy, I was actually 30 weeks pregnant at the time of dx but just like Lilacbushes I was told not to get pregnant again - didn’t go into it at the time as was in such a state of shock (39 when dx).
The thing for me is that I go to my clinics armed with questions to ask (if I dare - do I really want to know the answers??) but as soon as I get into the waiting room nerves take over and I’m just a quivering wreck.
Sorry I can’t help you with your specific problem but just wanted to let you know that I think there are quite a few of us out there with questions that remain unanswered. Love xxx