Breast Cancer Care Forum

No, that's not it. I thought that might be the case yesterday so tried to access the CC provate group but it said I wasn't logged in, hence the password nonsense, which is still happening. I've emailed you to ask you to remove my membership. ... View more

Unfortunately I've had enough of all this. I keep having  to reset my password when there is no reason for this - I haven't "forgotten my password" yet there is nowhere to put it until I "reset".  It used to be automatic when I logged on.I don't have time for all this and it's making me angry. It wasn't broke before so  why "fix" something that has always worked well? Moderators:I would like to withdraw from the Forum  and be removed from the list of members. Also I will not be a CC any more. Before the IT changes I was glad to support others a bit here and there, but increasingly I cannot cope with these IT issues and have not felt able to offer any support for some time now. So I'm off. ... View more

Think I may have meant electrolytes - some sort of salts anyway! x ... View more

Hi Pinklilly about 1 and a half litres daily is about right - 3 litres will take all the electrocytes (or something!!!?) out of your body so 3 litres is too much and can be dangerous. Good you are drinking water though, as it really does help, just not so much! Good luck with the rads - they will soon pass and you will be on to the next stage of recovery. x ... View more

Anna, the whole forum is a mess, not just the bit you refer to. The threads are not in date order for a start and I can't find any continuity . I do not have a mobile phone, only my laptop, which was fine until today. I may not persevere with it all as it is a very user-unfriendly site and is frustrating and time consuming. ... View more

Thanks Jill. I am such a dumbo when it come to techie stuff that I panic and get cross! xx ... View more

Nor me - can't even reply to a pm - horrible new website - help! ... View more

Ah - fascinating. I just did the NHS one and I came out as very low fracture risk, which equates with what my baseline DEXA scan showed 2 years ago -i.e.  very good bones for my age. Will be interested to see what they look like this year after 2 years on Anastrozole. I can't believe that  taking an AI is not seen as a risk factor! It should really be on the Frax Tool. It does seem to be a bit of a postcode lottery for some things. X. ... View more

Interesting, Chick1. Begs the question - how can they estimate your fracture risk if you haven't had a DEXA scan....? Hmmm. x ... View more

That's good. Perhaps you could post her response on here. NICE guidance is only that, and it may be that some areas ignore the guidance.....x ... View more

Okey Dokey Have just looked up the latest - July 2018 - NICE guidelines on follow up mammograms after breast cancer diagnosis, and it clearly says that mammos are annual for the first 5 years after dianosis : See below:   "1.13 Follow‑up Follow‑up imaging 1.13.1 Offer annual mammography to all people with breast cancer, including DCIS, until they enter the NHS Breast Screening Programme (NHSBSP) in England or the Breast Test Wales Screening Programme (BTWSP) in Wales. People diagnosed with breast cancer who are already eligible for screening should have annual mammography for 5 years.   [2009]"   So if peoplke are unhappy with the level of follow-up they have been offered  then it could be good to arm yourself with the NICE Guidance and politely ask for the recommended surveillance.   Here is the link to the full documment:   https://www.nice.org.uk/guidance/ng101   All the best. x ... View more

Agreed Joby. Just over two years ago at diagnosis  I was told mammos were to be annual for 5 years and I have had 2 annual so far, and I certainly would not be happy at a longer interval. Particularly as mine was an interval cancer - i.e. 2 years after a clear routine mammo - and tumour was 1.4 cm, so I would  prefer annual mammos for a few years yet in order to catch anything that might reappear at the one year mark not 2 years. Can we find out from BCC definitively if there is indeed a change? ... View more

Hi reynoly congratulations on having got the surgery done and dusted and all ready with the Letrozole.   I was similar to you - Grade 1, Stage 1, lumpectomy, now on Anastozole (2 years done now) and 15 sessions of radiotherapy. I was so grateful that I still had a breast and didn't need chemo that I was very glad to take the rads and hormone tablets as insurance against any odd little cancer cells maybe still floating around in the breast area, as I was and am anxious to avoid a recurrence if possible. Having read all the stuff on here about skin reactions etc I wasn't looking forward to the radiotherapy but I have to say I had no problems at all - not even a slightly pink breast, and was rather worried the treatment wasn'rt working.   I was a smoker at that time too, (not any more) and knew that this increased the risk of a bad reaction, but all was well. We are all different, but I'd say that if you moisturise and drink lots of water and follow the radiographers' advice it is probably worth doing all you can to avoid a recurrence. In terms of likelihood of a recurrence with your grade and size of tumour, maybe ask your oncologist for a true estimation of likelihood and then decide whether to go for it or not on the basis of that. For me, even a 1% improvement of odds would have been enough to make me choose rads, as I don't really want any more cancer, but i didn't even ask, there was no chance I wasn't going to take the rads. Good luck with everything whatever you decide, and a full recovery. x      ... View more

Hi Duracell (love the name!) No-one told me to, but it felt more comfortable. then when i asked my bc nurse if it was OK to do so she said "oh yes".  I think it gives helpful support in bed - mine was a post-op sports bra. Good luck. x ... View more

Dear shadowfax I feel so sorry that you are feeling as you do - a cancer diagnosis is hard enough to get your head around without feeling unheard and un-cared for in terms of how you feel about your proposed treatment. I'm glad you have found this forum and can talk to us on here. My experience is different in some ways to yours and similar in others. Firstly it was all so quick - "you've got cancer and we can either do a mastectomy or a lumpectomy" . WTF I thought? Unlike you, I immediately opted for the lumpectomy as I understood that the outcomes are likely to be the same so i didn't want to lose a breast for no good reason. But there was very little time allowed to process the diagnosis and to make a decent rational decision, and I'm imagining you feel really steamrollered into it all. I could so easily have opted for the mastectomy route with no real thought, and would certainly have regretted it afterwards. You need more processing time and more information.   I hope that when you have your next meeting with your consultant you can get some quality information as to why they prefer the route that  they are suggesting and what the advantages, if any, there would be in a mastectomy. My understanding is that is they don't advocate a mastectomy then there really isn't any point in having one, other than for the mental peace of mind that you mention. Take a list of questions with you so that whatever route you go down you feel listened to and better informed. One of the things that I and others have noted when we start on this blooming cancer journey is the lack of control that we feel in the early stages after diagnosis, but that this does improve as time goes on and we learn more about it all. X ... View more

kathyx you misunderstood my words-I was referring to  Appletree's internet research about current independent studies on SE's of people taking AIs.  And it is valid, and valuable. However,  I felt, and feel, it is important to state that there is also room for individual experience and I certainly DO advocate the "suck it and see" method for those who may be anxious about SEs, rather than have them afraid to take them and get a recurrance. I am 66 and on Anastrozole, which is an AI. ... View more

Hi Appletree your research on this thread is very interesting and of course the results of objective studies are necessary for people to know and understand as much as possible about their treatment options.  I would be a little concerned though if newbies to this forum who are just  about to start AIs were put off by assuming that side effects are inevitable, particularly the suggestion from the study that some can be long-term. Like Ann-m below, I have been on hormone therapy -Anastrozole -for nearly 2 years and feel fine and any occasional minor issues can soon be managed or eliminated. I appreciate that this may not be the same for everyone, and that some people need to come off their meds for very good reasons, but sometimes I wonder if there can be a sort of "reverse placebo effect" so that when we expect symptoms we get them, so I just wanted to put a bit of a balancer in here really, and offer some reassurance to folk to give their AIs a shot and see how they fare. We are all different in our responses and many people are absolutely fine, we just don't hear about them. All the very best to you. x ... View more

Mysterymouse I've never ever had depression or anxiety, not even when diagnosed 2 years ago, but these past few months I have definitely suffered from low mood and some anxiety not related to cancer but just random worrying thoughts, and then being worried about being anxious and not feeling like myself. Also poor sleep, something that I've NEVER experienced before, even when I was working and under stress - I used to be able to sleep for England whatever was going on in my life. Therefore I put it down to Anastrozole.  Like you, I was/am reluctant to seek advice or meds for this, probably for similar reasons to you, and wanted to try another approach.  Having seen a programme - Michael Mosely I think on TV - about Kefir, I researched it and there was some interesting stuff about the link between gut bacteria and the brain. Long story short, I ordered 3 weeks worth on-line which i have just finished and the outcome is promising - I feel more cheerful and am sleeping properly again. Now this may just be the placebo effect, but if it is I'm all for placebos if they work. We're not allowed to mention brands on here so i won't, but what i bought wasn't the supermarket stuff that is apparently pasturised. The first mouthful was vile - smelt and tasted like goat - but I got used to it and it doesn't taste so vile any more, though I did down each daily glass very quickly.....   I certainly wouldn't rule out anti depressant or anti anxiety meds if required - there is a place for them I'm sure and I know some people benefit from them greatly - but I wanted to try alternatives first.   I hope you are able to get some useful insight into anti depression and anti anxiety meds from those who have used them successfully so that you can make an informed decision as to whether they may help you. X ... View more

Hello Owl lady I'm like you - diagnosed end November 2016 and surgery December 2016 - WLE then rads. I've recently had my 2nd mammo and it was clear, but you're right - the anniversary certainly brings uncomfortable thoughts up, but with a clear result I can put it to the back of the mind for another year. I do hope it is the same for you.  As you say, not the best time of year for getting the diagnosis - everyone else all cheerful-seeming when we'd just had bad news. I'm sure as the years go by the fear of recurrence will recede a bit. I tell myself that I am lucky to have an annual mammogram so anything untoward will be picked up at a very  early stage, unlike others my age - 60s - who only get checked every three years.  I'm also aware that there are worse things than breast cancer that I could have had, things less easily treated, so I aim for the gratitude approach, but we are bound to wobble a bit from time to time.    Best wishes for tomorrow and have the best Christmas you can. X ... View more

Askolari The site usually asks researchers and similar to run things past them before asking for particpants for studies - keeps everyone safe. Perhaps you could contact the moderators. Thanks. ... View more