Community

Hi all I'm due to start taxol tomorrow and just picked up my steroid prescription but slightly confused about it. The note I received said to take 10 tablets tonight with a stomach tablet but there are another 20 steroids on the script and I seem to have to split them up into groups of 8, 6, 4 and 2. I'll ring the nurse and ask but in the meantime am I meant to take these on Fri, Sat, Sun & Mon nights or before the next few taxol sessions? Any advice on the best time to take these? Should I also expect to be awake half the night? Thanks Pamela

Hi there It's been a long time since I have been on this site....I finished my treatment Sept 2011, had mastectomy, chemo, Rad therapy = the Works !!! Unfortunately I also had a failed Diep Flap reconstruction April 2012 and I am now looking at going back for round 2 and having an LD FLap - any advice on what the surgery is like. I am seeing Margaret O'Donnell in the Blackrock Clinic next week - anyone been to her and had similar op ?Really would appreciate some feedback on what I can expect. Thanks so much

Since breast cancer diagnosis last october i have been having weird dreams, always about being lost/ disorganised/separated from people. Night sweats add insult to injury.Once woken by a night sweat it takes hours to get back to sleep. As I am oestrogen positive I am restricted from taking most remedies which deal with menopause symptoms. Active

Hi there I've just received my appointment for brca testing at the medical genetics clinic and am wondering what to expect on the day.. Will I just see the councillor and then have a blood test? Also, how long does it take before the results come back? Would appreciate any advice Resolute x

Hi all, I'm due to have my mastectomy in May in Cork and I will be having reconstruction at the same time. I know I don't want an implant but I would appreciate any advice regarding all other options please. I don't know if I can take being incapacitated again after finishing chemo which for me was very difficult!! I'd really appreciate any advice - thanksl

Hi Everyone I am new to this board but I have been a faithful reader since June 2013 when I was diagnosed ! I can honestly say that reading all your posts really helped me to focus on the task of getting through all the various treatments! I am on a waiting list for BRCA testing (currently takes a year!!) and I was wondering did anyone go privately and if they did how much did it cost!!!! Thanks for any info you can give!

Can anyone help please! I found a lump 3wks ago in my breast as the waiting list is so long today I decided to go private, so I've appointment for ultra sound tomorrow . Will I get results there and then or do I have to be referred back to GP? If there is cancer do I get referred back to public system?

Hello , Perhaps it is merely my reflection but health care system seems to cover only those who are either well off or very poor. I do not qualify for medical card, saying that by no means I am doing well, struggling is more appropriate word to use and my twice a year visit to GP is something I need to wisely incorporate into my budget. I had an opportunity to do a cheap mammogram when abroad. I took it. €20 including CD and narrative...not a bad deal and having already enquired after mammogram in Dublin I knew I am just a bit too young to get a free one and too poor to go privately . Unfortunately, the result was not "all clear". Something has been detected in my left breast and I was being advised to follow up with an ultrasound. So I went to GP and was being refereed for ultrasound. Since I am just over 35, it is free too (Yuupeee ). I was told by my GP that in two weeks I should be contacted about my appointment. There was no phone call or any letter for another two months so I started making enquiries and found out (after many fruitless conversations) that consultant, based on short note from my GP and without requesting to see my mammogram or anything else concluded that I am a low risk and my appointment is for December (10 months later). After many phone calls to my GP and hospital it seems that December is the best they can do and I can either humbly accept it or do ultrasound privately. In a state of panic I asked my GP if I can pay to speed up the process (I asked myself...how expensive it can be....€50, €60? After all I have a genuine reason to do it). When I expressed the wish to pay for it, I was called by the hospital nearly straight away, to my surprise, I was being offered next day appointment and other days that week were also available. Talking of jumping the queue. The price was the last detail mentioned and it was either €130 or more, not sure that is how shocked I was. Of course this is only ultrasound, consultation before/after ultrasound would be most likely another costly affair. I called back half an hour later and cancelled my appointment then I broke down crying. It is my first experience of how things work and though I did not have high expectations I guess, I hoped things are bit better organized than that. 10 months long waiting list sounds like a dead sentence for those who actually might have a cancer and 10 months long mental torture for all including those who are lucky enough to get "all clear" at the end. What saddens me most is that 10 months, in the same place, can be reduced to 24 hours as long as you are willing to splash the cash...now when thinking of expression “duty to care” I dare to add “for cash payees only”. It angers me that whomever assessed my case decided, by looking at one line long note from my GP, that I am a low risk. I could respect that decision if followed by review of the mammogram CD but they never bothered to ask for it or showed any interest in it. Instead they based their whole diagnosis on a short note. It is scary to think that it is how present days professionals assess patient’s health, no facts, no figures just a reasonable guess. One can only wonder if, in the same circumstances, the daughter or mother of same person who reviewed my case would be put on 10 months long waiting list. I will be going abroad to visit my family in three months and I will organise ultrasound and whatever else is necessary when there. After 10 years of being in full time employment, paying taxes, levies and all the rest I am forced to seek medical help abroad because only there I can afford it. It is all very sad and depressing. I wholeheartedly hope I do not have anything to worry, after finding out it takes 10 months to get ultrasound to check a lump for cancer I am dreading getting sick in here. This whole experience seriously scared me. It is sad when only rich can afford decent care and next day appointments while the rest of us is forced to wait on a 10 months long lists enough from me, just needed to get it off my chest. M

Hi again I took Tamoxifen for a year and didn't find the side effects too bad. I could blame weight gain on it but that would be helped along by eating too many goodies ( as in poor me, I deserve a cake) I've been changed to Letrozole/Femara for 5 months now since I had my ovaries removed. I'm finding the joint pain and stiffness really bad. At first, I didn't realise it was a drug side effect and I thought I was developing some form of arthritis. My feet and hands don't work at all in the morning when I wake up and I have to shuffle across the floor to get to the loo and keep squeezing my hands to get them moving. I have to lean against the wall and go one step at a time to get down the stairs. I probably sound like I'm 87 but I just recently turned 47! The stiffness wears off after about a half hour but as the day goes on it all starts up again especially if I sit down for a while. I love walking but if I go for a walk and then sit down, I feel like I've run a marathon with the pains in my legs. I spoke to the oncology team after 2 months and was advised to take a Glucosamine supplement but I haven't noticed any improvement. More recently, I spoke to the Oncologist and he said if I can't tolerate it that I can go back to Tamoxifen. It seems up to 30% of patients react badly to it. But, he said Letrozole was better for me by a few percentage points. So I'm afraid of dismissing any percentage points that will keep me well but also don't know how I can put up with feeling like this for 5 years. Has anyone had a similar problem with letrozole/femara and have any solutions? Thanks, Jo x

Hi again After all my questions, here is some helpful info. For anyone who has to pay for Letrozole/femara like I do,you may have been shocked to discover that a months supply is so expensive. I paid over 87 euro for my first pack (of the generic letrozole) at my local chemist. I then discovered that a " large well known pharmacy chain" charges 59 euro for the generic letrozole. Then I rang that chain in Northern Ireland and they charge 5.60 sterling for a month's supply! I got two packs there for 10.55 sterling. You can just bring your Irish prescription there (or to any EU country). With that saving, you could stay overnight, if like me you don't live anywhere near NI, just a thought Also the new chemist in Dundrum shopping centre is supposed to be selling drugs at NI prices so it might be worth investigating. Hope this is of use to someone.