Breast Cancer Care Forum

Hi Trotty As the others have already mentioned, don't remove the dressings yourself, I had mine changed by the nurse at my results meeting so the surgeon could check the wound, as it happened the surgeon wanted the dressing replacing as a small area had not healed properly. Best leave it until then as you don't want to open your wound up to potential infection.   Joemic x   ... View more

Hi Mine felt as Jill described and like you I wish it hadn't been my right side, I am so right handed it's unreal, it was a bit of an experience getting around the difficulties but I got there, I just did as much as I could with my arm clamped by my side - surprising what you can achieve even with that limited movement Don't try stretching your arm up too high - that is very sore   When I was sitting down or lying in bed I used to tuck a pillow under the arm, it helped ease the pressure. I think it was about 6 weeks before it stopped causing any issues, to be fair it wasn't a pain it felt more like a bad case of chaffing skin which must have been the nerves knitting together as there was no sign of any soreness apart from the surgery site.   Joemic x  ... View more

Hi ladies I had 6 x EC and was lucky enough to suffer very few side effects. I had phlebitis, so if you notice your vein gets red and starts to hurt, contact your emergency number for advice. I had problems with my veins but that is a known side effect of EC, I managed all 6 cycles without resorting to a picc line so was happy. Yes I lost my hair on day 16 following my first dose but it started to grow back a few days after my last chemo. I lost my eyebrows after cycle 4 but again they grew back after my last chemo, I didn't lose my eyelashes though. I felt more tired on the cycles when I also had my bisphosphate infusion but felt well on the cycles where I had EC on it's own. Apart from those few side effects I had no others and felt well, I didn't experience any side effects from the Zarzio injections I had for 5 consecutive days each cycle.  You might find that you experience minimal side effects too and like me find it very doable😀. Good luck with your treatment and talk to your fellow Nov chemo starters you will help each other through.   Joemic x  ... View more

Hi ladies Thank you both for your replies👍🏻 Don't worry Wonky, i'd never physically thump somebody, now mentally that's a different matter😁. I think it's all the built up anxieties from the past few months getting on top of me🙄, I suppose it had to happen at some point, I thought I was sailing through a bit too easy😔. Anyway I think I'll see how it goes on Monday and just warn my manager that if insensitive comments occur, I'll go outside until I've got over it (telling her first of course), generally my manager is fab and very supportive, so are the majority of the team just one or two nasties but I suppose most environments have them. Thank you and I'll take on board the advice you've given.   Joemic x ... View more

Hi Sarah I am totally with you on how hard waiting is it really takes it's toll on you unfortunately there is a fair bit of waiting in this game😔. I had my 1st surgery on 7th Feb and went for results 26th Feb to be told I needed a second op, this was done on 28th Feb, results 12th March when I was referred to Oncologist to discuss oncotype testing. Onco appt 28th March, tumour sent off for testing, results back 18th April, 1st chemo 26th April. Finished chemo 9th August. Appt with Radiologist 6th Sept and had planning session. Rads from 16th Sept, last one 4th Oct. Final oncology appt is on 14th Nov. These time frames might not be the same for you but it will give you an idea, lots of waiting time as you see and it drives you potty but you get through it as hard as it is try not to worry it won't make things go faster, easier said then do I know but you will find out just how strong and resillient you are and you'll soon be at the end of treatment like I am. It may seem a long way off but it will fly by. By the way don't think I've got a super memory remembering those dates - it's amazing what a calendar can do for you😂 Joemic x  ... View more

Hello ladies Sorry you find yourselves here but it is a great place for support and finding out other peoples experiences. At my results appointment I was told the initial findings from the biopsy i.e size, hormone and HER 2 status. They gave a date for surgery. Please be aware that things can change following surgery, the size of mine was larger than previously thought, this happens because until they get the tumour out they cannot say for certain the size. They may tell you your treatment plan includes rads and/or chemo but again until you have had surgery they cannot give a definite plan as things can change. Mine was initially surgery, rads and hormone therapy, however after 2 surgeries to get clear margins my tumour was sent off for oncotype testing which then changed my treatment plan to also include chemo and bisphosphonates. Try not to think of this meeting as a definite treatment plan, more like them sharing the information they have found out so far. Until all results are in they can't give you a definite plan. No matter what develops there are lots of people on here to support you and listen to any gripes or moans you may have, it's a safe place to express any thoughts you may be feeling. Best wishes and hugs Joemic x ... View more

Hi ladies I haven't got SBC but felt I needed to add my voice to yours in that I find it incredibly crass and insensitive to see the title 'Unsurvivors' WTF you are ALL survivors, you are living the best you can, if you was an unsurvivor you wouldn't be here. I cannot understand why a charity fighting for and supporting people with breast cancer would label some 'unsurvivors'.😡 Joemic x ... View more

Hi ladies Another one here😊, I'm starting back at work Monday, looking forward to it but a bit concerned I'll get the mental blocks, think I'll tell them I cant give medication out for a few weeks - I need to know I'll be safe. Had a bit of a humiliating experience at the opticians a couple of weeks ago, I put my prescription in my pocket but couldn't remember what I had done with it. I checked my pockets 3 times and couldn't find it, when I asked if I could have another copy I was left in no doubt that the receptionist wasn't pleased and said rather nastily 'well have you bothered looking in your bag' and huffed sarcastically when I said I had. In the end I did find it, I don't know why I couldn't the other 3 times I looked, when I went back to the desk to say I'd found it she said 'well your too late, I've had to ask for another copy since you said you couldn't find it' she was sneering when she said it and rolling her eyes as if to say you stupid woman all in front of other customers. Usually I would have challenged her behaviour but I was so upset that my mind had totally blanked that I left and haven't been back to get my new glasses yet. For the first time ever I put in a written complaint and have recieved an apology from the manager. It gave me a real insight into how people with the very early stages of dementia feel and its really scary stuff. The episode has really knocked my confidence and am just hoping the chemo brain doesn't affect my work so thank you ladies for your tips on how you are managing at work🤗 Joemic x  ... View more

Hi thurnefi I think waiting several weeks for a GP appointment is not really faesible for you as you are in obvious discomfort. When I first took mine (Ibandronate) I had lousy discomfort but I have managed to solve it by taking the tab as soon as I get up with 1/2 pint of water otherwise it got stuck. After taking it I did not have any other drink for one full hour, oh boy was my first coffee nectar😊. I would then wait another full hour (2hrs after taking the tab) before eating some breakfast, I'm not really a breakfast person but have persevered. I generally have cereal with milk (for the extra vits and calcium). I'm still doing this now some 10 weeks later and have no problems. From what you are describing it doesn't seem as if it is suiting you. If you can't get into your GP's for some time have you got a breast cancer nurse you can contact or the nurses on here or are you able to contact your Oncologist via their secretary, you may need to have a discussion about having it IV instead. I don't want to be a scare mongerer but it does say on mine that you should contact a nurse or Dr straight away if you experience the side effects you describe. Hope you get sorted soon Joemic x  ... View more

Hi Saffyron   Just to update you, I took my first Sun brand Letrozole on Thurs and felt stiff hip joints on Saturday. I don't know if it's due to the brand or wether it's a culmination of taking Letrozole for 2 months previously🤔, time will tell I suppose depending on the brand I get next. Pains are manageable without painkillers at the moment though. Hope you are finding it easy with the brand.   Joemic x ... View more

Hi Viv   Sorry you find yourself here but you will find lots of help and support. Can I suggest you go on the 'going through treatment' thread, you'll find an Oct 2019 chemo starters thread which you can join and support and be supported by ladies who are going through chemo at the same time as you.   Joemic x ... View more

Hi Donna   What treatment did you finish? are you on hormone therapy, as a common side effect of these are joint pains.   Joemic x  ... View more

Hi Hope62   Glad to be of some use. Did you get any information leaflets? it might tell you on there what is recommended. I'd maybe give them a ring to check, just so you've got the cream in place or maybe yours is one of the hospitals that don't recommend it, either way it would be good to know - but that's me I like being prepared .   I had 15 and didn't show any reaction until my 14th session when my skin became faintly red and a little redder after my last one.   They say your skin continues to get worse for the 2 weeks following then improves over the next two weeks, so your skin reactions should peak by the 13th then get better so you should be ok for christmas. After my last rads session my nipple became very sore (but sorted that once I realised the loose tops were causing friction) but was fine less than a week later, I'm on my 4th week following my last rads and can honestly say I am having no bother at all, no skin peeling or breakdowns at any point. Looking forward to going back to work next Monday. I hope your skin holds up as well as mine did (I do think the Aveeno helped by stopping my skin from drying out).   You'll soon be able to tick this off your list and move on.   Good luck - if I can help you at all give me a shout.   Joemic x  ... View more

Hi Ladies   Things starting to progress well for you now, it might still seem a long way off but time will soon fly by. At my planning meeting I had a chat with the radiologist who explained what was going to happen in the actual scan. I was given the dates and times for my rads sessions and reviews (mine were the last day of the 2nd and last week). They'll answer any questions you might have - ask them again about recommended creams as they're the ones who monitor your skin throughout).   Also ask what you should do before your sessions as each hospital seems to be different. At mine you changed into a gown and put your stuff in a shopping basket which you carried into the treatment room with you then after treatment you went straight back into the changing room and got changed again apart from your review days when you have your skin checked (which could either be before or after your rads).   In the CT scan you remove the gown and lay on the bed - you have to raise both arms above your head and hold onto the bars. The CT scan itself makes a whirling sound as it's taking the xrays (mine sounded a bit like Dr Who's tardis . The actual scanning is over and done with in about 20 mins. During the scan when they pinpoint where they need to be they will come into the room and do the tattoos. I had 3, 1 either side of my body and one on my sternum. They feel like pinpricks which aren't too bad. They also drew around my breast (before you remove it later take note of where it is as that is where the rads will be), don't be surprised at how far under your arm it goes as they have to make sure they reach all the breast tissue. During rads make sure you cover that area with your creams as it does become a little sore due to your arm causing friction by rubbing against your body (popping a cushion under your arm when you're sat or in bed can help stop this happening a bit).   I don't want to overload you but thought I'd pass on the bits I wish I'd been told before they started.   Not long now ladies, you'll smash it   Joemic x  ... View more

Hi Redfox   I used a piece of an old 100% soft cotton t shirt. Cut it big enough to cover your breast and armpit, when you've put your cream on, put the material over your breast then put your bra on - make sure your bra doesn't touch your skin. It's a faff but you soon get into the swing of it and it does stop your bra sticking to the cream.😊   Joemic x ... View more

Hi Jippy   Shi has given you some good advice there. All I can add is that I had 6 x EC infusions and did not have hardly any side effects however, I had read that some people had fasted the day before, the day of the chemo and the day after as they found it helped them with nausea but I found the total opposite. I tried it on the first infusion and suffered terrible heartburn that night and the next day, it was very uncomfortable and needed the extra meds they give. I then realised that I was actually that hungry the acid in my stomach was playing up big time, as soon as I ate a full meal everything settled down. After that I made sure I ate before I went for chemo and at my usual mealtimes after (or as near to it) and I never had another problem with it - the anti sickness meds I was given to take an hour before chemo was sufficient for me.   I did develop phlebitis after my third infusion but apart from that I had no problems with the EC and found it very doable. I had Zometa infusions every 2nd chemo (3 in all), during these cycles I felt very tired for two days then picked up - never felt fatigue on my EC only cycles and was really pleased when my final infusion was EC only.   There was plenty of people eating sandwiches and other food whilst they were having their chemo without problems. The ladies who were cold capping were drinking hot drinks as that apparently helps with the headache. It isn't something I am familiar with as I didn't cold cap.   Drink plenty of water for the next few months as it helps with the fatigue. Give me a shout if there is anything else I can help you with.   Joemic x  ... View more

Helly,  forgot to mention, I was completely bald on my last chemo on 9th Aug but a month later I had a covering of hair and today I have a good covering, you can still faintly see my scalp but I have a lot of hair and it's about 1/2 inch long now. I use Lush new shampoo soap (it's a red circle and smells of cinnamon).   Joemic x  ... View more

Hi Ladies   I had my 15 rads in Sept, finished on 4th Oct but thought I'd pop in and wish you all well and give a few tips that helped me through. (I had my last dose of chemo on 9th Aug and 1st rads on 16th Sept).   First tip is (if you haven't started already) is to prepare your skin, start moisturising at least twice a day (3 times if you can). Your rads team should tell you what creams they recommend but be prepared to find out that different hospitals seem to recommend different ones and some say none at all, it can become very confusing when you swap notes on what creams you were recommended; if only they would recommend the same things then we would find it much easier but alas that isn't so. I used Aveeno (not one recommended by my team but they were happy I was using it). During rads don't use bubble bath, soap or shower gel that contains SLS (it can irritate the skin), or hot water, just warm. Don't wash the area with a sponge or flannel (it rubs the skin too much). I used dove soap, I used to lather it in my hands and carefully smooth it over my skin and rinse of with clean barely warm water from a jug, if you rinse with a shower make sure it's not on a power setting..ouch!. If you haven't had a mastectomy wear a soft crop top type bra (you can get them from Asda, Tesco etc). I say this because I found my nipple became very sore and realised it was made worse by the friction caused by loose fitting tops. I would put cream on my breast as soon as rads finished and used a square of very soft cotton (I cut t shirts up) over my breast then would put the bra on over making sure the cotton square was under the band of the bottom of the bra, poking out of the top and under the arm, basically so none of the bra material actually touched the rads area. The cotton soaked up any sweat and prevented chaffing - particularly under the arm which does become a bit sore. When you can go bare chested do so as it helps keep the breast area cool thus reducing irritation. Unfortunately with 2 teenage boys in the house I could rarely do this until late at night but it was a relief when I could. When sitting or sleeping try popping a cushion under your arm, it helps prevent your arm rubbing against your body. When going through rads keep up with the water, especially straight after, it does help with the fatigue so does walking. During rads and the first week after I moisturised with Aveeno 4 times a day and have reduced it to twice a day now. My skin held up really well with only a little redness (it looks a dirty brown now) and once I realised why my nipple was so sore that cleared up as well. I was very lucky and had no peeling or skin breaks, whether the regime I followed helped with it or not I don't know but I would follow it again if I had too. You will all find out what works best for you but I hope you find some of what I have mentioned useful. One things for sure although it is a bind going every weekday for treatment the time flies by. If you have any problems at all let your rads team know as soon as possible, the earlier they know about it the swifter you can get it sorted. Good luck ladies, you'll be through it before you know it.   Joemic x  ... View more