Breast Cancer Care Forum

Hi Jaks , sorry you are suffering, and that your Onco isn’t more supportive. When I started taking the Letrozole my Onco noted all my side effects and actually told me to try a different brand. I tried 3 before I found one that suits me. There is a lot of discussion on this subject , and a whole thread devoted to it. If you pop onto the hormone section there are literally hundreds of post’s re Letrozole , so plenty of advice there. It does take some time, I found, for my body to tolerate the drug, so hopefully you will be the same. X ... View more

Hi Loulinen, know how you feel. The rads team did warn me to look out for the unexpected as they said bloods alter with the toxins and the effects of radiotherapy. The skin gets thin so we burn in the sun. I am always cold, and the central heating I’ve noticed is on much more than previously. In addition, my thyroid meds have been increased each year. I do keep a fluffy blanket on the couch in the living room, and I have slipper boottees in the winter. It’s the constant buying to keep comfortable that makes me mad. More jumpers, socks, fluffy pjs and really good boots for the winter. My Onco wasn’t dismissive of my queries, but certainly pointed me towards my GP. I guess if it isn’t cancer related then that’s the route to take. X ... View more

Hi Sue, I am on Letrozole and Palbociclib. Can get constipated at the beginning of my cycle but loose at end 🙃 Thinking it’s the Palbociclib for the constipation and the Letrozole for the other. Deffo gripey, and when I have to go...,,,well, I have to go. I drink my peppermint tea, and ginger nuts are back in the cupboard. Although I think I’ve found a winner in Morrisons rice cakes covered in dark chocolate and mint! 😛 x ... View more

Hi Drida, I think Charys has explained everything really well for you. From your pathology results it seems that you are in the early stages and the tumour is not huge. ER+ and HRE2 - is good as it is the most common and therefore the most treatable. The chemo and rads are doable, and once the treatments are complete you will have a meeting with your consultant who will, hopefully, say the magic words that there is no evidence of disease. There is always the risk of a few rogue cells lurking about, so you never know, unfortunately. That’s why you’re having a second op to make sure.  A close eye will be kept on you, and your long term treatment is to prevent the return of the cancer. I wish you safe treatment and successful outcomes. X ... View more

Hi Naid, sorry you have had this unexpected complication. I think that’s quite a wait to be treated. I would kick up a great big fuss as I understand that it gets extremely painful. A friend of mine , not in my hospital, unfortunately ended up needing a lot of medical help and wore an arm brace for a while to keep her arm straight as it was pulling up. I was able to manage mine , but I remember standing in a hot shower at 2am crying with pain and massaging my arm. I did my exercises religiously , massaged my arm with warm oil and also paid for lymph massages. I think I was quite lucky to get away with it. I believe the stretching exercises in TaiChi and yoga at Maggies also helped me a lot. I had codeine left over from my chemo and that was helpful in the short term. X ... View more

Yes, Marie, I am. Was put on the combo in October 2017. Some joint pain with the Letrozole, but very tolerable. The Palbociclib was a different matter and my neutrophils kept crashing, so I had a few NHS  holidays while I got sorted. It’s a well known side effect, which is why your drug is much kinder to the body . My Onco never gave up on me and fiddled with the dosage and timings until I am just sailing along! 🥳All four lung mets are stable, and there has been no sign of any growth. Last scan was two weeks ago. I am on a trial, and apparently I am the anomaly in the group. Oldest person on smallest dose with longest rest period ! 😇. Just have to trust the team to get on and do their best. Your success is, after all, their success. The very very best wishes for successful treatment . X ... View more

Hi, sorry no one has got back to you . I’m assuming that as you are talking ‘new’ breast you have been remodelled after surgery? I think that this is a discussion for your rads consultant and / bc nurse as they will be able to give numbers. I’ve had a lumpectomy and complete lymph node clearance so can only talk of my experiences. My nipple changed colour, very unattractive lay I think. I had 25 rads , plus 5 boosts direct onto the nipple. My skin became extremely sensitive, and still is two years on, to the point where I can’t wear lace or wool against my skin. Also, there has been a general tightening in the areas of the wounds which I have used bio oil and massage on to help movement. Hopefully someone who has had a mastectomy and reconstruction will be along shortly with better input. X ... View more

Hi, sorry to hear your story. You are on a kinder sister drug to the one I’m on, Palbociclib . Great success stories with this family of drugs, and although extremely expensive, NICE have allowed their general usage because of this. I’ve got my fingers and toes crossed that they work for you, too. 💐🍀  ... View more

Quite natural to feel anxious, I would too. Great that you’re being fast tracked as the less waiting there is the better, in my opinion. The longer you hang about the higher the anxiety levels. Try to remember that it’s a 50/50 chance at the moment that it could be something non cancer related. This is indeed a safe place to bring your worries. Keep us updated as to how you get on. Big hugs. 🤗 x ... View more

Got to be those ninja girls or we’d never make it! 🤯. Where else would you find perfectly sane people actually holding their arms out so toxins can be injected in, and then, upon command, lay perfectly still whilst being bombarded with lasers! We’re all walking bleeding miracles. Being treated with anything less than respect and admiration is a big no no in my book. 👍😇 ... View more

Denzel, you really need to check with your Onco. Every one is so different with healing times etc, and also you need to be careful re Lymphodaema . I ignored advice re gardening, heavy lifting etc and have 1% Lymphodaema in my right arm. I had full WLE. I do go to the gym 3x week but mainly cycling, bit rowing, lots swimming and stretching classes. Took over a year to get my energy back, but you sound a lot younger than me. I’m 72. Best wishes in your fitness quest. X ... View more

Yes, I’ve donated all mine as not only did the boning press against my scars, but the lovely lace itched madly. Sat and cried! 😢 M&S cotton bras just don’t have the same va va voom. My BC nurse just said to wait until scars had healed, but she did warn me that the chemo and rads would sensitise the skin, and she was dead right in my case. Hoping you have better luck. X ... View more

Hi, it does sound from your diagnosis that the medics are probably right. Congrats on catching it so early, and we’ll done for getting through it. Once you have had that diagnosis though it is understandable that anxiety plays a part in your life. My BC friends tell me that bone mets are horrendously painful, and the pain does not fluctuate. It is so painful because the cancer eats holes in the bones. Perhaps it needs investigating further as a non cancerous issue! Cracked rib perhaps? X ... View more

On here, Wonky, that’s the place to do it! Just come on here and have a bloody good rant, girl. 🤣 I used a journal to write my swear words down. It’s amazing how many f**k’s fit on a page !!! 😱 You know all those bottles and jam jars you are supposed to recycle ? Quite satisfying when you just smash them.....oh dear! X ... View more

Donna, that sounds spot on what you are doing. I love the coconut oil, it’s like getting into bed with Malibu. 🤣 Bet it itches, mine did 😱. I used, and still do, Aveeno soft and gentle shampoo. Once it seemed bit better I bought the caffeine shampoo and hair growing combo from Boots. On Letrozole for two years and hair a bit thin and fragile so I do treat it with care. Never did I think I would spend so much on shampoo!! Hope this helps. X ... View more

No, flu jab doesn’t affect neutrophils, or so I was told by my Onco last year. Believed him and had mine done at end of cycle , which was when flu clinic was on. X ... View more

Hi Bev, I would check that your eye drops / solution is preservative free. I had a shocking time with my red, watery eyes until I was prescribed a preservative free gel and drops on the advice of my optometrist. The preservative apparently builds up a film and having chemo and rads just increases the effect of the chemicals as our body becomes more sensitive. Perhaps don’t wear your lenses until it’s sorted? The Letrozole does affect the eyes and nose, unfortunately.  X ... View more

Hi, how very distressing for you. I think perhaps you would be better to post this on the nurses advice section. I’m not a medical person, just someone with cancer, and really the only thing I can do is give you a gentle hug. Are you a UK resident, as I don’t recognise some of the terminology? Perhaps you should seek advice from the nurses section. If it were me I would be questioning my Onco and team until I DID understand it all. There is a downloadable leaflet  on here which would help with your pathology report, but only if you are in the uk. X ... View more

Hi Sarah, talk about insult to injury! ☹️ I’m not medical, but my experience of chemo is that I got a rash after first dose. Fortunately the nurse who was giving me my gsf injections spotted my red splotchy face and contacted the hospital. My dosage was reduced as I was obviously intolerant to that amount, and I was ok after that. I think it’s worth mentioning to the hospital in case it is the same for you. You really can’t be too careful at this stage. X ... View more