Breast Cancer Now Forum

Hi Cactus Queen, Before covid disrupted everything I was planning on having immediate reconstruction, then it had to be skin and nipple saving with implants for delayed reconstruction but then ended up having to be a straight mastectomy with plans to have reconstruction a couple of years after radiotherapy. I think I've gone full circle though and I'm hoping to have a mastectomy on my other breast next year some time when covid allows.  I'll miss my surviving breast (and I'm slightly worried that I'm taking it for granted right now especially as it probably helps me ignore my mastectomy side) but I'd like to be symmetrical. Right now, I feel like I've got none of the benefits of a pair of breasts nor those of being flat chested so everything's a compromise. Luckily I tested negative for the known breast cancer genes so it wouldn't be considered risk reducing surgery but there's always the niggle that they haven't discovered all the genes yet so removing the other breast, lowers the risk.  Right now can't bear the thought of going through abdominal surgery (or from elsewhere) to create the new breast, I just want to get on with life. Although a mastectomy is still an operation with its risks, I feel it's more of a known quantity that I could handle. But that's just me. I think (I may be wrong so check with your consultant) that you have to wait at least 18 months after having radiotherapy before you can have reconstruction, so if you're undecided, you can keep your options open by still planning for reconstruction and then you can always change your mind nearer the time.  I found having the mastectomy quite traumatic at the time so was referred to an oncopsychologist and have since talked it through which I found really helpful. I don't know if that's an option where you live. There's also the Someone Like Me support and they may be able to put you in touch with someone who may have had to make similar choices a few years previously and be able to give you a different perspective with the benefit of hindsight or help you talk and think through it. By the way, was it you that was having the bone strengthening tablets? I'm not sure if I'll be having any bisphosphonates, but I know that my hospital offer another type called zoledronic acid which is given through a 15 minute drip but only every 6 months. Again, I don't know if it's an option in your NHS area or if it would be suitable for you or if you can switch once you've started on the tablets but I thought I'd let you know that it maybe something to investigate if it means you could get a lie in (or do early morning yoga)! Finally, re bras, one of my nurses said that Asda had a really good range of mastectomy and post surgery bras. You'd probably still have to buy them online at the moment as I don't know if changing rooms are open anywhere (maybe I'm wrong) but at least you could take it back to a real store if you wanted to. Good luck. Tabs ... View more

Hi CQ,  I was just lying on the sofa having tea and toast and listening to Marr on the TV when I read your message about having to take the bone strengthening pill first thing but then not being allowed to lie down. They don't mention no more lie ins as a long term side effect! Tara, your side effects sound awful. Plus you've got catch 22 of wanting to lose weight but not having the puff to do it. You will though, it's not much consolation, but it's safer if it's slower and gradual. I don't know how you've had the energy to run the household and look after everyone and keep everything clean whilst your husband has covid. It's amazing the strength that can be found when needed. I bet you could have done without having to. Ann, I hope everything is settling down for you. Have you been able to get out on any nice walks recently? I am but have to take it easy as my toes (and fingers) are hurting more each week. It's my last chemo tomorrow, I've got the bell ready! I'm not sure about E45, people have said aveeno and a couple of Australian oils, I've been given one by a friend by grace cosmetics called vital skin oils but I need to show it to the radio therapy team to get confirmation that it's OK. Speak to you all soon, CQ, I hope you're allowed to lie down now in the time it's taken me to write this.  Tabs xxxx  ... View more

That's such a nice photo, it's made me excited about finishing my chemo in a month. I think because I had to delay a couple of treatments, it's felt like it would never finish. Have any of you had any peripheral neuropathy during chemo? If you have, I was just wondering if it's become less noticeable since you finished or not. Mine is only mild at the moment and my medical team are monitoring it and will change my dose if they need to. I've been reading everyone's experiences about radio. I'm definitely looking for any radio top tips for when I have mine at the beginning of January and also for hormone treatment if anyone has it. Have a good weekend everyone, it's so nice to nearly be on the other side, Tabs xx ... View more

Hi Everyone, It's really nice to hear that you're all coming to the end of chemo. Am very jealous, mine isn't due to finish until the end of November. It was meant to be mid November but I tested positive for covid in a routine test before a chemo treatment. It was a week when test results were delayed so I didn't find out for 6 days. On the plus side, I didn't have any of the usual symptoms, the achey neck I thought was chemo, and the prickly heat on the tops of my hands and feet the doctors thought was chemo too. I think that one of my teenage boys must have given it to me but it's not their fault. I've also been referred to have a mole removed as it's changed colour during chemo, which apparently is a thing so check your moles for changes and check with your GP if you find any. I'm waiting to find out if it can happen during chemo, or if I'll have to have it removed between chemo and radio. I'm meant to have the 5 days of radio and then Letrozole for 5-10 years. I was hoping to have the radio this side of Christmas as there were reports that the isotopes or whatever they use in radiotherapy may be affected by Brexit. I guess everything will take as long as it takes. I'm looking forward to having my other breast removed in Spring so that I can be symmetrical as I'd already lost my right nipple in the original mastectomy. I'm also awaiting the results of the genetic tests, but was told it can take 3 months, hopefully it will be negative so that my boys won't have to worry if they're carrying it. Anyway, I hope you're all well. It's great that we're nearly through it. Good luck everyone, Tabs ... View more

Btw, so none of you worry, abscesses are just something that I've been lucky enough to have been prone to over the years when stressed. It's not a chemo thing, definitely A level related. Good luck if any of you have got kids with GCSE results this week.  ... View more

Hi Cubot,  Your symptoms from your latest chemo sound not nice, to say the least. I'm glad it's clearing up. Are you on 2 week cycles? I start 12 weekly cycles of paclitaxel on 7th September. The weekly cycle are meant to be more tolerable than 2 weekly but I'm worried it's going to be fairly relentless. At least with the 3 week EC cycles have felt like I've had 2 weeks off each time. Am just coming out of days 4-8 of my last EC. EC combined with my eldest's A level results produced the most enormous abscess on my bottom so I've also been on antibiotics and Glow Up. I finished series 2 on Sunday so will be in desperate need of TV recommendations for 7th September. Hopefully the Autumn TV schedule will have started then and hopefully enough new stuff was shot for it pre lockdown. I hope everyone else is doing well. Tabs ... View more

Hi Tara,  What was the mouthwash that you were using? I was prescribed some on Friday as on my last cycle, I had a couple of mouth ulcers that took over a week to clear up using just saltwater or bicarb water gargling and bonjela. I'm not due to pick up the mouthwash until tomorrow when I have the 4th and last round of EC. I was looking at the mouthwash contraindications online but didn't see anything about staining. I may try to hold out from using it and just try more frequent preventative saltwater gargling unless I get multiple or big ulcers. I move on to weekly paclitaxel in September but, hopefully, I think that the side effects aren't meant to be too bad with the weekly dose, though I may get unlucky. I hope that everyone is well and not struggling with treatment too much.  Tabs ... View more

Yes, I'm feeling that, like it's all really dragging, I should finish chemo in November and then I'm really hoping I'll get my radiotherapy out of the way in December so that 2021 will hopefully just be a tidying up year. I'm really hope that I can get a matching mastectomy on my left side done by some time in March so that I'll be healed in time for a June holiday. I'd love to be swimming in the sea right now, ideally from a beach with a lovely little taverna!  ... View more

Hi Everyone, I've been a bit quiet for a while, having had round 3 of EC last Monday. The first few days were fine but have been really tired since Thursday afternoon so have been taking it easy. I think most of my symptoms are from the filigrim (sp?) injections, aches, sore throat, bottom, tirednes,  etc. Am really looking forward to them being done. I was ok with them on the first cycle but I have to psych myself in anticipation now. Look forward to all the chemo and radio being done though it looks like it will creep into 2021. Hope the rest of you have a good week. Tabs ... View more

Happy Birthday Tara, I hope you have a lovely day. Hi Cecilia, I haven't had stomach cramps, I'd call your chemo nurse for advice. They may ask what you ate before they started so see if you remember having eaten anything unusual. Good luck, Tabs ... View more

Dear Anna and Horseylass,  I had been foolish enough to suddenly get my hopes up that I may not lose my hair when it was all there on day 18 and 19 (of EC with cold cap). I thought maybe that's the difference the cold cap makes or maybe I'm just lucky. Previously, I'd been expecting it to go by day 15, but getting my hopes gave me an extra sad couple of days when it started coming out a pace on day 20. Am over it now but just warning you so that you can be more sensible xx ... View more

Well done for keeping going Anna, that sounds like a really hard week with the picc line and the kids but it sounds like you're on the other side. I'm on day 6 of cycle 2, a bit tired, woozy and sore but just trying to keep my head down and hope that this will be the worst of it for this cycle. I'm looking forward to being half way through my EC. It's a big comfort to know we've got each other for support on this journey.  ... View more

Hi Susan,  That's interesting about the brows, do you use the drops before you lose them, once you've lost them or after the last chemo cycle? My friend who went through chemo in December said to get them microbladed before treatment but that wasn't an option as all the salons are still closed. I just picked up a synthetic wig from the hospital over lunch so that I've got it for zoom meetings when my bloods are low next week if my hair keeps coming out at the same rate. Outside, I think I'll probably just use a scarf rather then the wig to protect it from the sun. Having had long blonde hair, I thought I'd fork out for a similar natural one but they take a lot more styling and looking after than synthetic ones and I was rubbish at looking after my old real hair and I've got clothes moths in my flat so they'd probably have the wig for midnight snacks. Your wig looks lovely though Tara, really natural. I ended up getting a really short one that goes tight to the nape of the neck which feels really nice. The wig consultant at the hospital was really helpful. When we ordered the first three to try, one long, one bob and one short, I hadn't had my real hair cut short, so none of the wigs felt short enough and I hadn't trusted her on the colours of the shorter ones so she ordered 2 shorter ones in. This one was £74.40 with NHS discount. It was a Raquel Welsch one and is quite a good compromise. I may buy the other one that's slightly neater in 4-5 months when I'm allowed to get another discounted one. I've got a pink Lazytown Stephanie wig somewhere in the kids dressing up stuff along with an orange plaited Pippi Longstocking one. I'll have to dig the lipsticks out too. Tabs ... View more

Hi Claire,  I'm sure you'd have been given the syringes to self injected if you were meant to. Maybe you'll get them when you move on to EC. That's brilliant about your lack of nausea even without the medication, it sounds like you're doing really well. Check with your consultant when you move on to EC as it may be that nausea is more likely with EC, I think hair loss is more common with epirubicin too. Stay well! Tabs  ... View more

Hi Claire,  I had my second cycle of EC yesterday, I move on to 3 months of paclitacel at the beginning of September and then like you radio and tamoxifen or some equivalent and hopefully some surgery to adjust my wonkiness. I've gone full circle from wanting both breasts off on diagnosis to reconstruction on the right side which was changed to implant because of covid and then full mastectomy and being distraught about losing my nipple and skin and desperate for reconstruction (and tummy tuck) to now just wanting my left breast off to match. I'll probably change mind again though. With regards to your chemo you may be better talking to the other girls on paclitaxel but I think the one thing we all agree on is drinking lots of water and taking the full course of anti sickness medication. I've also recommended regular gargling with salt water as that was the solution for the sore throat that I developed on day 4. Soaking my bottom in salt water in Bath, bidet or clean washing up bowl also worked for me from day 5. I think it's really important to get outside in the morning, even for just 20 minutes in a mask with a friend in case you unexpectedly need help. Your body will tell you when it wants to lie down. One final tips that I got from my consultant last week is to take a paracetamol (if you're not allergic) an hour before you self inject yourself with the thing beginning with f that helps the white blood counts not dip too low. Apparently it's common for it to cause a temperature. Nb. When I called the hospital on day 6 because I had a sore throat and 6 hours of a slight temperature (37.6°C) they said not to take paracetamol as it would mask the symptoms if I did have an infection as I wouldn't know if my temperature would have carried on increasing otherwise if that makes sense). Feel free to set me straight on anything I've said or add anything, especially if you've got Nb-paclitaxel experience. Good luck, it's much better once you've got a cycle under your belt. I was pretty much OK from days 8-21 if that gives you something to look forward to. Tabs ... View more

Hi Tara,  I definitely bloated with the steroids in cycle one but I think I lost the weight by some time in week 2 (or maybe I just got used to it). I'm just about to have take 2 of trying to fit a port followed by cycle 2, hopefully using the port. My hair started falling out on Saturday, nearly 3 weeks in. I was a bit low as I'd just begun to think that maybe it won't happen to me. At least it means the chemo is working. Am nil by mouth now until the port procedure. Hopefully I won't be too nauseous this time, I'm definitely going to have all the drugs they give me, bloatedness or not. I hope you all have a nice time today.  Tabs ... View more

Hi All,  My port insertion was aborted today as they weren't 100% sure it was going where it was meant to so it's been rescheduled for first thing Monday in the main building where they'll have full support if there are any complications. On the plus side, whilst under observation afterwards I spent half the day in an air conditioned room to myself with nice cotton sheets. I later discovered the roof garden whilst I was killing 30 minutes waited for a chest xray which was nice (and meant I could take my mask off). I also found out by the by that I'll almost certainly be having radiotherapy on the whole chest cavity and that my bloods are back up to normal which means that my chemo on Monday should be able to go ahead as planned which is good (assuming my blisters don't get infected). I wish I'd thought about a scrap book, that's a really nice idea. I hope that you're all on track for a good weekend, Tabs xx ... View more

Hi Cecilia,  You poor thing, I hope you heel quickly. I always feel so stupid when I hurt myself like that but there's nothing you could have done to prevent it. Have you got anyone to help you at home? I hope you get better soon. I got a pair of blisters on my heals yesterday wearing my new trainers which was really stupid, I should have known to wear them in with plasters. I'm just waiting to be called in to have my port fitted which is quite exciting, it should be ready for cycle 2 on Monday (assuming my blisters don't get infected in the meantime). I hope everyone stays accident free for a while. Tabs ... View more

I tried the wigs they'd ordered for me to try at the hospital when I went for my covid test yesterday. They were awful but they made me laugh a lot. The hair advisor is ordering me another couple to try on. I think that since chopping my long hair off for the cold cap, I've got used to having short hair so the wigs I'd chosen before were too long. I did have one short one but it was too blonde as my hair is much darker at the roots (which I had taken into account but obviously not enough).  ... View more

Hi Anna,  Sorry to hear that you're feeling rubbish, tired and hungry is a bad combo at the best of times without chemo thrown in. D efinitely call the hospital now if you've been sick 4 times as it's really important not to dehydrate as you need stuff flushing out. They'll also be able to adjust your anti nausea medication so that it works for you. They'll definitely be able to do something.  Hope you feel better soon. Let us know how you get on. Good luck.  Tabs ... View more