Breast Cancer Now Forum

Have a look at the "Eye checks on Tamoxifen" thread.  I don't think PVD is associated with Tamoxifen, but it certainly is associated with  moderate to high myopia. Hope all goes well at your appointment on Monday, Revcat. ... View more

The risk factors that Eyedoc lists for Macular Degeneration, (often referred to as Age Related Macular Degeneration - ARMD) , such as getting old, smoking, UV exposure, genes are quite right and therefore unrelated to Tamoxifen. However, there are other well documented ocular side effects of Tamoxifen including the formation of retinal crystals, which may occur at the macula, (the most sensitive part of the retina), and these changes can have a very similar appearance to some forms of ARMD. Tamoxifen has also been associated with corneal changes, cataract, and very rarely optic neuritis, (affecting the optic nerve). Therefore Moorcow's optometrist, (lovely John), is correct and although these adverse reactions are pretty uncommon, I think it makes sense to have regular, perhaps annual, eye examinations.   Incidentally, UK optometrists are qualified  - and required -to detect eye disease, and to refer onward to a GP or Ophthalmologist where necessary.  If you regularly attend the same practitioner, they will have recorded "baseline data" ie how your eyes looked before you started Tamoxifen, so any subsequent changes can be monitored and reported to the GP/Onc/Ophthalmologist. ... View more

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... ... View more

Me too! Although it's sad to hear other people are struggling, it does help to know it's not just me. Finished treatment a year ago, and I have days when I look at a beautiful sunset and think how wonderful it is being well now and really try to take pleasure from small, simple things. Other days I see at my scar and radiotherapy tattoos as constant reminders, I have pains in my breast, tiredness and flushes and all the other lovely things tamoxifen gives us and think "this is never going to leave me - my life has changed forever and I don't like it!" I don't share these thoughts with friends and family either. I'm determined that one day I'll realise these thoughts have gone, and hope it's going to be soon. I am finding far more good days than bad now and hope this will soon be the case for everyone else too.     ... View more

Thank you both...I will kit myself out with some compression socks and pace up and down the aisles a lot! (And keep off the in flight G and T and stick to water)   ... View more

Hi All, Just spent the morning working my way around the new forum. Like many others, I hate change!! Was particularly confused as to why all the posts were "upside down", i.e. newest first  -  having to scroll backwards was most annoying. Why was this way chosen as the default setting?...I can't be the only one who finds this incredibly counter-intuitive.    Anyway, I found Cornishgirl's post on how to fix this so feel better now! Thank you Linda - I would never have found that on my own as I am a complete technophobe.   Overall, I'm sure the new forum will be fine once we've all got the hang of it....and I hope by then it won't need to be changed again!     ... View more

Yes, thanks Lulu, that all makes alot of sense. Very interesting that screening for asymptomatic spread does not improve survival - I did not know that and it does clarify my Onc's policy to scans. Cheers XX ... View more

Hi, The question of scans intrigues me too, largely because I've never had one. Diagnosed 2012, WLE and SNB, (no node involvement) Chemo, Rads and Tamoxifen. My Onc said doing routine scans on everyone rarely picks anything up, and that they prefer to go on symptoms. But, as Sarah said, the primary BC had no symptoms..... So now, its just six monthly checks, (annual from next year) with annual mammogram. It certainly seems to vary alot from hospital to hospital. I would have thought there would be national protocols..oh well! ... View more

Hi Beam, How are you? I've just read through this thread and am so sorry you have found yourself here. You are NOT rubbish; the shock and worry of this situation would test the toughest of people. Have you had your results? Really hope it turned out OK..if it was not such good news do keep posting on here as everyone is really supportive and will understand exactly what you are going through, they will offer advice if needed or just be there if you need a rant! Somehow, we find a way through it, each in our own way and you will too. Take care. ... View more

My nails were great through FEC chemo too - agree it seems to be the T which causes the trouble. However, since taking Tamoxifen they split, flake and break continually. Anyone else finding this? ... View more

Hi Sonja, I know what you mean about the "new" you...sometimes hearing this phrase really irritates me. I don't want a "new" me...I was very happy with the "old" one. Sadly,however we are stuck with the facts and have to find a way of trying to adjust to them. If you are only just finishing treatment it is still very early days, however I think it is better to try and nip these things in the bud if you possibly can, therefore seeing your GP is very wise. Hopefully he/she will be able to help. Good luck PS Tammy wrote her post just as I was writing mine. She has said what I was trying to say...only a lot better. Thank you Tammy ... View more

http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/$FILE/article3.pdf This is the article I mentioned. X ... View more

Hi Sonja, You are not alone!! It is very well recognised that the end of treatment is one of the most difficult times. Everyone expects you to be delighted it's "all finished" and "back to normal". We all know it's not like that. You have been through the most horrendous experience and it is not just a matter of clicking your fingers and feeling better. There is a book I found helpful: The Cancer Survivor's Companion, by Frances Goodhart and Lucy Atkins. There is also an article by a pyschologist which is often referenced on this forum that is very good. I will try and find the link and post it. Have you had a chat with your GP about how you are feeling? Is there a Maggies centre or similar at your hospital? The BCC package "Moving Foward" is helpful.There is lots of support out there, please seek it out and keep posting on here. Very many of us know exactly how you feel, and I promise you it does get better. Give it time and be kind to yourself. Take Care X ... View more

Very good advice from Daisypegs, but I would just add that I thought that NICE guidelines are that all new breast lumps are seen at the breast clinic within 2 weeks. (At least this is the case for England and Wales, not sure about elsewhere). So, it might be worth ringing your GP and discussing this with them. Waiting is the worst part, so I do hope you will be able to be seen sooner. Good Luck X ... View more

You are absolutely entitled to rant, this is a very stressful time. I wish hospitals realised how traumatic each further wait can be and how annoying it is when appointments are rescheduled seemingly at whim, when we have made strenuous efforts to make sure we can attend them. My last Onc appointment was changed four times, (only a check up but still very irritating,as I had to keep rearranging work, as did my husband). I tell myself hospitals are huge organisations and that they are not doing it to annoy us but...... Now I'm ranting!!! I'm sure it's been said before, but try and fill your time with nice things, eat well and rest well too, it will help with your post op recovery if you are as fit as possible beforehand. Best wishes for next Thursday. x ... View more

Hi, I was told to take four weeks off, and certainly didn't feel right much before that. I was intending to go back for a time before the chemo, but it followed straight on, with no gap. Then four weeks after that finished the rads started, so all in all in was a bit under a year!! I think decisions have to be made as you go along, and as your treatment plan evolves. It is difficult to know how you will feel. Hopefully your work place will allow you some flexibility. If possible, do not rush back before you are ready. Give your body time to recover. Good luck with your treatment. ... View more

Hi Martha, Good news! What a relief for you. I also had clear margins and no node involvement, and was grade 2. However, I was advised to have chemo because of the size of the lump, (4cm) and my age, (43). These seemed to be important factors. Chemo is certainly no fun at all, but now, 10 months on from finishing, it seems like a distant bad dream. Whatever decision you make must be the right one for you, once you have been given all the relevant information. Good luck x ... View more

Hi Shelly, Just wondering how you are doing - Have you got a date for your surgery yet? Hope you're coping OK and still managing to feel strong. Take care of yourself XX ... View more

So very, very sad to read this. Margaret's posts were kind and supportive, often funny and always wise. Heartfelt condolences to you Owen, and to all Margaret's family and friends. RIP XXXXXXX ... View more