Breast Cancer Now Forum

I’ve only been offered booster too.   ive had a rollercoaster couple of weeks. I had a lump on my scar which the nurse thought was scar tissue. They ultrasound scanned it and saw a lump so they biopsyed it. Another emotional week waiting for test results. The good news is that it is only scar tissue 😅 and last Friday I rang the bell after 18 rounds of treatment, surgery and radiotherapy 😌 😌 😌 wooohooo ... View more

Hi i went with NHS in the end but a different hospital. I just couldn’t get my head around waking up flat. I had an immediate under the muscle adjustable implant (Becker) so far I’m pleased with it but RT starts in March and the surgeon says it might go hard and 25% of women have them swapped for a new one in 12 months. not a matching pair when I’m naked but in my clothes you’d never know. I still might have the other one matched up at some point in the future    good luck for your surgery  ... View more

Hi just checking in as I haven’t been on for a while. I had my single mastectomy with auxiliary node clearance and implant on 25 Jan. Initially I was really pleasantly surprised by the lack of severe pain but I’m starting to get frustrated after 2 weeks. I feel like I constantly have a really tight bra on ( actually I do, I have to wear it 24/7 for 6 weeks) and at the same time like I don’t have enough support so I find myself cupping the implant to hold it in place, like you feel if you do aerobics in a rubbish bra! But overall not too bad, I’ve been able to get out for a short walk every day 😀 I'm expecting my pathology results on Weds. The old demons are back whispering 'what if...... what if'. Desperately trying to put it out of my mind and know that what will be, will be but It would be so amazing to hear it was clear, or at least that I only need the HP treatment and nothing more sinister. After this week’s results they are going to start planning the radiation. I need to have the implant fully inflated first although it is already a fair size. The wound looks good and overall I’m pleased I went for it. Fingers crossed that the RT won’t frazzle it! I had my Covid jab in Jan. Pfizer with zero side effects 😊 The hospital said it must be at least 2 weeks before/ after surgery. ... View more

Hi Amy It seems like it’s just you and me left going through this now! I'm so pleased to hear that you got your taste buds back. I can’t wait to enjoy food again without the horrible taste in my mouth and fear of stomach upset! I managed to get fully dressed and made up with my wig on and did a good job of joining in for Xmas day although my 15 year old daughter cooked most of the lunch. But I’ve been exhausted since, I didn’t do much on the day except sit around, it was just the three of us as all our family are in Tier 4 ( luckily still tier 2 down here). I saw 3 surgeons and they all tried to get me to go flat and have later flap surgery for the best outcome. I know it makes sense but I’m desperate to fast forward to a near normal outcome. And as I’m older than you my recovery will take longer and I’m struggling after 50 years of face cream, make up, hair dye, wonder bra and diets to live with my current self who has a few strands of stringy yellow hair with grey roots, terrible skin with spots and wrinkles, flabby tummy and no energy. So having something to put in the non wired granny bra seems like a good idea. 😅 My BCN mentioned possibly more chemo, but no one else has. I’ve read about Kadcyla for HER2 breast cancer is it hasn’t all gone, that’s why I asked the surgeon about what they find. The surgeon seemed to thank they would clear it all in the surgery but I know that the Kadcyla is quite new, so maybe they don’t know? I’m going to ask my BCN specifically, not that any part of me ever wants to do chemo again, but at the same time I NEVER want cancer again so I have to do everything possible to keep it away. I’m starting counselling tomorrow ( phone based ) to help me to deal with it all, hoping this will help me accept a lopsided fake implant and make peace with extra treatment if required!  Amy have you had a Herceptin and Perjeta treatment yet? I’d love to know if you had any side effects? I’m in for my first one next Friday. Wishing you loads of luck for your surgery. Please let me know how you get on x Happy New Year x ... View more

I’m not sure if this has already been mentioned but Paxman scalp cooling have a brilliant Facebook group. There’s lots of members who have had fantastic success stories and a large number who have had significant loss. All the members are really supportive, it’s been a wealth of info for me about treatment as well as hair tips. I did everything by the book but have still lost about 70%. It is growing ( grey roots) and I have a fab wig that I wear on the rare occasion that I leave my Covid bubble! Some regimes are harder than others and some people respond better.  good luck xx     ... View more

Last Chemo done! Last Injection done! Feeling frankly rubbish today. But knowing that I’m past this phase really helps. the new year will bring surgery, RT and 12 x 3 weekly herceptin and perjeta infusions,  but I’ve been promised that the SE from the infusions are minimal. I’m waiting on a date for surgery, looks likely to be 25 Jan at the latest. After seeing Bupa surgeons I’ve discovered that ther really isn’t the infrastructure to have this done outside of the NHS, however one of the surgeons that I saw is head of breast surgery in the next town. He has agreed to treat me there under the NHS and will do an immediate implant using an adjustable silicone/ saline implant 😊 He says that there is  strong chance that RT will make it go hard and that I may want it replaced in 12 months (NHS will do this). I feel so much more positive now I know that I don’t have to go flat for months. Apparently everyone is entitled to a 2nd opinion on the NHS. I met my original surgeon and she seemed to support the decision, she effectively told me he is a better surgeon!  the new surgeon also examined me. I asked him what they could find in surgery that would be bad news. He said that if my cancer wasn’t responding to chemo I’d be feeling lumps now and he can’t feel anything to worry about. He says that if BC cells escape from the breast during chemo then the chemo will kills them, the rest of the body is not very hospitable to breast cancer unless you delay treatment. Let’s hope he’s right.  I’m aware that the implant won’t be perfect and have booked for counselling in Jan. Let’s face it every step of the way I seem to have chosen the hard route so there’s bound to be complications. I can’t face the thought of the recovery from flap surgery now but maybe I’ll feel different in 12 months if a replacement implant isn’t suitable. Keep pushing on ladies. I’m really hoping to be past the worst of this cycle for 25th but just getting past this will be a big Xmas present! Happy Christmas 😘 😘 😘   ... View more

Amy you should hopefully have a little break from it all over Xmas! That’s good timing 😊 We have agreed to delay our Xmas day until 28th as I’m going to be rough after my last chemo and no one is visiting, it’s a bit sad but it’s been that type of a year! Amy please do keep in touch, you’re a month ahead of me so I’m keen to hear about your surgery. Will you have the herceptin and perjeta injections? I’ve heard that they are not too bad. I have gone ahead and booked a private consultation before my meeting with the NHS surgeon, so hopefully I’ll be able to compare my options and get a decent outcome. Would really like to end up wit a nice front and centered matching pair, but I never had them like that before! ... View more

Any last one done! Amazing, it must feel so  good! i had number 5 of 6 on Thursday. I hate to tempt fate but for the first time ever the side effects are manageable. I’m not sure what’s changed? I have been taking magnesium supplements as my levels were low. I have also almost completely stayed off paracetamol where previously I was topping up 3-4 times per day. Now I’m wondering if some of my symptoms were literally me being poisoned by the paracetamol? My onc has prescribed Venloflaxaine for hot flushes. It’s an anti depressant. I haven’t taken it yet, I’m a bit scared of messing with Serotonin levels and the side effect list is petrifying.  If anyone has tried it I’d be keen to hear. i have an appt on 17th to see the surgeon about my mastectomy and LN clearance. I’m not at all sure I like her. They have told me that all reconstruction is on indefinite hold at my hospital which is really freaking me out, BC nurse said to expect early 2022! I need radio so I know it will be delayed. I do have Bupa cover so I’ve been looking into using that for surgery. My local Bupa hospital has been commissioned by the NHS for Covid so I’ll have to travel. When I mentioned it to my BCN she went a bit terse with me, so now I’m worried that I’ve pissed her off and that I’ll be even further back down the list! You’d think they would be happy to have one less NHS operation to pay for! I'm going to stick with it though, getting the reconstruction done as well as possible is crucial to my mental wellbeing for the future, I know I won’t end up with a perfect pair but you have to try for the best outcome. Sending love and healing wishes to all x ... View more

Any top tips for dealing with extreme tiredness? I’m coming out of no. 4 and this round has made me the most weak. One Wednesday I could barely lift my head off the pillow. I felt like my body was shutting down on me. My heart was racing but no temperature. I get  exhausted going from the bedroom to the living room. I am trying to eat lots of small snacks and meals and stay hydrated, not allowed to take any supplements. I was so worried I saw my go yesterday who did an ECG which was fine, but my heart keeps racing. I’m booked for anaemia tests on Monday, hoping that they find something, because it seems much harder than before. 2 more to go, but the last one will leave me feeling like this at  Xmas which worries me, it’s so unfair on the family!   i know it sounds dramatic but I get really scared of dying when I’m so weak. Not that I will die in my sleep but that this is what it will feel like when the cancer finally gets me. I think I need to increase my physical strength to help me with my emotional resilience. But I just can’t find the energy! ... View more

Hi Maire oh I’m so sorry. I’ve been on Docetaxel since the start and it is sh*t (literally in my case). i was hospitalised after the first cycle after picking up an ecologist infection. There is no treatment for this, you just have to let it pass through. Urghh in particular I was rdehydrated despite drinking loads of water. cycle 2 I still has diarrhoea. I didn’t use Imodium but I took dioralyte after every bowel movement and managed to hold off the dehydration. cycle 3 I ate a completely gluten And dairy free diet. Mainly rice crispies, banana, White rice, a few peas and some chicken an fillet steak because I really craved it. I didn’t get diarrhoea but still a very sensitive stomach. I also took 2 omeprazole per day and gaviscon helped too. However I picked up a bacterial infection and ended up having a night in hospital and antibiotics that caused diarrhoea! I also had about 3 days of deep depression, couldn’t stop crying, convinced I couldn’t get through it. Once the antibiotics took hold I really picked up and I’ve been able to get past the negative feelings (poor husband got it both barrels for a few days though!) Ive been cleared by by onc to use probiotics now, but at first I was told they might give me an infection as it’s live bacteria. My poor stomach needs some help now! Cycle 1 I also had v bad mouth sores. For 2 and 3 I sucked ice cubes ( water and squash) during the docetaxel,  it was tough because I’m cold capping and my treatment takes over 6 hours in total but I think it really helped. My mouth did get sore but nothing like the first time when my teeth would have to be peeled off my lips when I woke up in the morning. the other change was that after cycle 1 I spoke to my onc and they reduced the dose. Do speak to the hospital about this before giving up. we can do this! I’m in Again tomorrow for no 4 of 6 and absolutely dreading it. But it is working so we must stick with it. When you’re feeling well enough speak with your onc and see what they can do to help you. You will get through this. Sending lots of love xxx ... View more

Well Chemo no 3 was another challenging one. I felt real low physically and emotIonally for over a week, culminating in an overnight stay in hospital on Friday when my temperature peaked. They couldn’t find any reason for the high temperature, my blood count was really high, so high that the dr had to re-check my results to make sure that they were mine as she wasn’t expecting it to be so good 8 days post chemo. This is the 2nd time I’ve been in hospital and they keep telling me my immune system is so strong, yet I get knocked so hard by the treatment. I do wonder if my immune system is fighting hard against the chemo and that is what makes me feel so bad? Anyway they gave me IV antibiotics wile I was there and I felt immediately better so I guess there must have been some infection there. They sent me home with oral antibiotics. Guess what the side effects are? Insomnia, Nausea, Diarrhoea and Mouth sores! The diarrhoea has been the worst, but I’m using the ondanstraton Anti sickness to keep it under control. i had some positive feedback on my ultrasound. The onc said that the main tumour is over 30% smaller! So after a week of panic because the radiographer said she couldn’t get a clear picture I am finally starting to feel like this is all worthwhile and tentatively planning a future! They are going to do an MRI as well for more clarity but knowing that the treatment is working has given me such a boost. Also, my gorgeous step daughter is visiting this week. She’s a primary school teacher and lives in the North East so we were a bit concerned, but she managed to take 3 days leave before the end of term to isolate, then took a Covid test at the weekend to be sure she was ok to come, my 15 year old is very close to her and she seems to have ‘come back to life' having her sister here so it’s been a positive week all round. I'm halfway through my chemo now, so I can start focusing on the end at last. Let’s hope we all sail through the second half- I reckon I’ve had my share of drama in the first half! ... View more

Hi Maire Thanks for your kind words. No miracles yet for me! The radiographer said that she can’t get clear up images to be able to make a comparison due to my dense breasts, She says the only way to know would be to do another MRI, but its the onc whether they want to bother because it probably wouldn’t change the treatment. So not the worst news but I have to admit I was really hoping for a positive boost. I’ve been very tearful again today just because I feel like its such a long haul and just once it would be nice for something to go my way. I'm going to try and find out if there is any point pushing for an mri. Tbh, unless it’s going to be good news then I think I might need to protect myself from the stress of more waiting for test results. ... View more

I finally got in for my no 3 TCHP chemo on Thursday, 9 days delayed. Tomorrow I’m going for my halfway ultrasound. The onc said the radiographer 'might' give me results whilE I’m there. Can anyone tell me what to expect? I had felt that my lump was shrinking and my nipple was coming back to normal, but after the delay I lost the breast shape again. I also have stubble on my legs! So that means my cells have had time to regenerate and therefore possibly the cancer could be growing as well.  I’m wondering What is reasonable to wish for after 3 rounds? 10% reduction? More, less? If anyone has any experience I’d be keen to hear. Thanks all x ... View more

Does anyone have any experience of delayed chemo and if it will affect the outcome? Last week I was feeling so positive. My onc had told me that my blood counts are really good so she would reduce me to 5 days of Zarzio injections (I’m sure it’s the injections that make me feel crap) and give me steroid lozenges for my mouth sores and I was so ready to get no.3 done and be half way through. then on Friday night I had a sore throat, and I panicked and booked a Covid test. MISTAKE! The results took 3 days to come back and the hospital have delayed my chemo by 9 days to be 2 weeks clear of symptoms even though the test result was negative.  Everything I see online says 7 days delay is fine but nothing about longer. My BCN say she’s 'sure it will be fine but we wouldn't want to go to 2 weeks'. Now I feel like I can feel it growing again. I have grade 3 so it’s an aggressive cancer. And it's messed up all my dates so now I will be sick at Xmas instead of celebrating finishing, and instead of finishing 2 weeks before the end of school holidays next year I will be finishing 2 days before so no celebration holiday possible either!  But mainly I just want to know that it won’t affect my survival chance?  ... View more

Hi Everyone  I’m now day 13 after 2nd cycle, feeling much better and determined to get control next cycle as best I can. I have some questions: Does anyone else have the Zarzio injections and feel that these are what wipes you out? I’ve been reading about people using antihistamines to reduce the reaction. I’m going to ask my onc but wondering if anyone has any experience? Im getting a really 'toxic' reaction in my stomach, I guess it’s stomach acid. I take omeprazole and gaviscon. Any other suggestions for this? Also, has anyone found a decent online wig supplier. Despite cold capping it looks like I need to splash out and buy one but all the local suppliers are closed due to Covid so I’m going to have to risk buying online. Ideally I think I want a topper for now as I still have quite a bit of hair. Its so confidence building to know that despite being so low for a week, I can bounce back to normal (ish) and I’m hoping now to manage the lows better. in other news I have ordered 100 spring bulbs ( I am really not a gardener!). My plan is that when the flowers come up in the spring the worst of this will be over and the flowers will represent my new (hair) growth!!! ... View more

I had real problems using my usual regional based products. And not using them sure shows that they work, I definitely have more wrinkles without them! i was recommended Squalane oil from The ordinary, plus Eucerin moisturiser with no anti ageing. I also have eucerin Aquaphor, which is like a posh Vaseline! Over all my skin is doing much better on this combo. But I can’t wait to get back to some anti ageing products! ... View more

Hi Lucy so sorry you are still waiting for test results. The waiting is as debilitating as the chemo I think. my onc told me they would ct scan at midway point to give a progress update. I’m day 5 after my 2nd session today. Not quite as bad as last time as I’m managing the sores but still have the runs and am barely able to get up. My 80 year old mum has come to stay as my husband is away and I genuinely can’t manage on my own, which is sort of the blind leading the blind!Hoping that this will pass and maybe it might get easier as I get used to it. My last stinky chemo is in December which seems a mighty long time away! good luck for your results, let Us know how you get on x ... View more