Community

I'm only home went to Blackrock with my friend. Well..... Jane is not happy with the margins and wants to go back in Monday week to take out another bit. I was disappointed but once I didn't have to have more chemo I didn't mind that much. I'm a bit confused and my husband was giving out and saying 'why did they not take it all when they were in there' . He didn't ask when we were in there though!!! She said there were small tumours left but still when I asked her would I be cancer free when she takes out the rest if the margin she said 'oh yes but technically I think you're cancer free now and we are taking the extra bit just to be sure it doesn't come back' still she mentioned tumours. I'm confused. I've left a message for the cancer nurse to ring me to ask her.

Hi girls I'm desperate for advice. Had a double mastectomy end of Nov, had expanders put in to stretch out the skin to be replaced with implants at a later date. I found the expanders extremely uncomfortable so had to reduce the volume he put in last week. Due for another expansion tomorrow and he called this evening to say that radiation has to start in a few weeks and he won't be finished in time, (ie to put in the volume they removed in surgery). So even though he is only half way through he has to quit. Radiation is pushing this "guidelines" crap (rads have to start 12 wks after surgery) and cosmetics has to come second. But I really can't stop half way through, I really need plastics to finish before rads can start. I am absolutely deviated. I need to push radiation back, I need mores time. Anyone else ever come up against the different departments before and gone against guidelines? I feel like they are always working against me..no one is on my side. Cosmetics are important too what difference will a few weeks really make????? Really?

Hair gone!!! Went and got it shaved, but was brave and at least its done...

Hi am on tamoxifen now nearly 5 months and side effects getting worse . I really thought I was losing it, forgetting simple things , even every day words .just could not think what items were called. Repeating full sentences 10 min later forgetting I had just said the exact thing. Along with terrible joint pain and hot flushes every 1 1/2 hours during the night. No sleep at all unless I take a sleeping tablet. Went for first check up today and yes memory fog is a side effect in 1%. Lucky me !!!!! They now decided to get me to stop the tamoxifen or 3 weeks to clear my system and see if any or all side effects go. Then start back on half a tablet for 2months then the full tablet. Also only a few still have boob pain after lumpectomy and guess again who the lucky girl is. They did a mammogram also and it seemed fine, but the pain ,because boob still tender was unreal. Still results good, except for side effects. Must go back in 6 months for checkup. Also did you know in order to get eyes lasered you have to be on tamoxifen for a year and finished rads for 6 months. never ending.

Hi Girls Five chemo treatments under my belt so far AC x 4 and Taxol by 1. Monday I did an MRI and Wednesday did Mamo and Ultrasound. Met surgeon yesterday and he was pleased with my progress he said there had been a partial response to the chemo which is the best they hoped for there are four responses a) it gets bigger b) it stays the same c) partial response and d) full response - we had never expected a full response. He seemed really positive and he said that after my Mascetomy in April that I would be Cancer Free and I made him repeat it twice;-) I was sort of really shocked when he said - not sure what I was expecting as that was always the goal. Was fecking delighted. He was nearly thinking of cancelling the next three chemos but Onc said she was "very happy" with my progress and that we should continue on with it - I too think I should continue as found in the last three weeks I can actually feel it shrinking myself. We discussed immediate recon (which I really want) he said he would be happy to go ahead with that but have to see the plastics doc to see if she agrees with it. I am a big boobed girl at around DD/E cup he said that recon would prob only go to a C cup so other one would have to be reduced (dont have a problem with that). So all in all girls great day, chemo working, tumour shrinking and possible immediate recon and of course CANCER FREE in April.....even the nurse repeated it - I thought to be honest it was quite a big statment for them to make?? Wanted to share my news with you all as you have all been great its great we have each other on here. I hope we get more good news from other girls as well - we need good news on here to keep us all soldiering on. Going to a Fancy Dress tonight as Sinead O'Connor as a priest - woohoo and I am sure gonna celebrate and have loads of drinks

I finally decided this is the day! Unlike many of you I have worn my wig constantly since I lost my hair. I always had long hair and just didn't feel like me without it! (didn't really feel like me with it either) 10 months since chemo and I have about 2" of wavy, fine hair. It's not what I had but the wig is getting uncomfortable and I am afraid it will slip off as it does not sit well over hair! I am going to a friends 40th tonight in vintage dress (1920's) so the short hair looks the part! I have a friend coming to draw eyebrows for me as these still haven't re-grown, and I cannot do them with my glasses on and cannot see to do them with the glasses off! Has anyone else suffered eyebrow loss? any tips? I have heard they can be tatooed on, has anyone tried?

This is a hard topic to write or talk about, but is a really live wire issue on US and UK breast cancer support sites. Since treatment for breast cancer my desire for intimacy dropped dramatically, but with tamoxifen on top it is now non existent. I've been on tamoxifen for 2 years now and my Onc has told me he wants me to stay on it for 10 years. I have brought up my complete loss of libido at every check up and he has at least acknowledged that tamoxifen can do this, but as to what can be done or any other help is as non existent as my libido I know I had some problems with body image after the mastectomy, but that has improved and what would help now would be some interest in sex. I am a young fit 52 year old and was pre menopausal before the cancer diagnosis 2 1/2 years ago. I've lost 2 stone since then, and have worked hard to regain my health and fitness, but I reckon there is not a speck of oestrogen left in my body and parts of me are now aged 80!!! We are women and this is an integral part of who we are. We hear lots about 'holistic' approaches to recovery, well this is part of our whole being, but it has never been approached unless I've brought it up and then it gets brushed over with talk on lubricants blah blah. But the real issue is a complete and utter lack of desire. Has any one out there found any help for this issue? It's not about pain on intercourse (tho' that 's true too), or using lubricants, we never even get that far. Any help?

Hi well taste is on a good run at mo thankfully!now I have started to get (keeping me awake )bone pain straight down front thigh.i am assuming that is tamoxifen and all the lovely joys it brings to the party!!!had an MRI for back issues last wed still waiting on results so could be from back.wAlking up stairs is particularly sore and as a mother of 3 you can imagine the stair trips. So should I just put up with it see if it passes,or ring hospital and see if the have results of MRI .who do I ring thought my breast nurse or oncology who ordered it.am at a loss as to who I can ring now that I'm out. Thanks girls Xx

Hi Girls, Now that chemo & radiotherapy are over I'm beginning to look at my diet/exercise etc. Have any of you tried juicing and growing wheatgrass ? What diet changes have any of you made? Has anyone attended Bernadette Bohan's 3 day wellness programme in Cork? Appreciate any advice/tips which you can give. Shirls

I need to vent. I have completed all my cancer treatment, which is great, but I naively assumed the road to re-construction would follow. I feel I cannot get my life on track until all surgery is complete. I understood there would be a waiting list but at the moment I can't seem to even get on the list! The first obstacle is that I need a referal to Beaumont as I need a diep (my back is too thin for LD) and they don't do Diep in Limerick. I assumed I would get my referal last October when I attended the breast clinic for the first time after Chemo was completed. My consultant was on maternity leave and the locum refused to do the referal in her absence - I still don't understand why as it was already in my notes that I needed Diep. I reluctantly accepted an appointment to see her in January at her first recon clinic. That was the 15th, but instead of the consultant I saw the registrar, I did ask if the consultant was in, she was, (I should have insisted on seeing her) but the registrar went through all my details and promised that my referal would be sent by the end of the week. I have rung a couple of times to see if that happened and found out this morning that the referal was not done yet and the secretary wants to speak with the consultant before she does anything. It just seems so unfair I have already waited 3 1/2 months since I thought I'd get my referal (and it's 8 months since I finished RT).