Breast Cancer Care Forum

  Hi Daisy, Wolvesgirl and all other ladies. hope everyone is staying safe and well. Daisy it does sound like your treatment is similar to mine and I understand your frustration at more chemo after surgery!  It’s definitely not what you want to hear. Iv been told I won’t need radiotherapy.. maybe it’s to do with my lymph nodes coming back negative and the fact I had a full mastectomy 🤷🏽‍ ♀️ Did they say what type of chemo? I’m on the tablets and half way through my second lot already. I had more side affects with the EC than the pax but everyone’s different so it’s hard to say.  wolves girl I’m glad your starting to feel more yourself and I know what you mean about being on hyper alert! Every niggle freaks me out then when I speak to someone about it it seems to go away!  Hope everyone is enjoying this nice weather as much as you can ☀️   Love to all  Lisa xxx ... View more

  Hi ladies    I’m unsure of the cycles I’m having tbh as when I spoke to my oncologist over the phone I’m sure she said 6 months! 😳 but speaking to my BCN yesterday she said it’s not usually that long and she couldn’t see anything on my notes. Iv a telephone appointment on the 29th so I’m going to clear that up then. No hair loss with this type of chemo which I was over the moon about as just having got a full covering which has thickened up loads to, I wasn’t happy about the thought of loosing it all again!  Spottycotty hope everything’s ok with your scan it’s good that there being thorough and listening to your concerns.  hugs  Lisa xxx ... View more

  Hello Ladies    So Sorry Iv not been one for a while, all my notifications have been going into my spam for some reason!  I hope everyone’s safe and well.  Just a bit of an update on me, can’t remember where I was up to but I had my op (mastectomy) on the 4th March just before covid really kicked in thankfully! I would say I’v got full movement back, still some little twinges now and again but apart from that all good. Results from surgery where it had shrank the tumours one from 22mm to 15mm and the other from 8mm to 4mm the lymph nodes that were taken out were negative for any cancer...but because it hadn’t got rid of the tumours completely there was a higher risk of it coming back with me being triple negative therefore they wanted me to have some more chemo! 😫 😫 Capecitabine which is in tablet form, I take 4 on a morning and 4 on an evening for 2 weeks then have a week off then start the cycle again. I’m nearly finished my first cycle and fingers crossed Iv had no major side effects. They said with this form of chemo it’s usually gastric side effects. It’s a very new trial that’s been done for triple negative that shows that having this extra chemo significantly reduces the risk of it coming back again. My oncologists words were your only young and were going for cure, so that’s why they want to throw this at it too. They’ve said because I had full mastectomy and negative results from lymph nodes that there’s no need for radiotherapy. Think that’s where I’m at so far. I obviously had a bit of a melt down at the thought of more chemo and that it hadn’t fully got rid of the tumours like I thought but my BCN said that sometimes it can not shrink it at all so the fact that mine has responded is still good. It doesn’t actually feel like I’m having chemo as I’m just taking tablets if that makes sense. I’m going to my own doctors to have my bloods taken then just have to pick my tablets up from the chemo ward, which has been moved out of my main hospital to a smaller one near by which is a “clean” hospital (no A AND E Dept and no one with suspected covid)    Holly I’m so sorry your surgeon didn’t get the clear margines they wanted to get, I would say to you that the mastectomy op and recovery is really not as bad as I thought. Reconstruction wise mines obv been delayed now but I’m hopefully going for them using the fat from my stomach. If I was having both done then I would of probably of gone for the implants so they both looked the same. Although implants will need more surgery further down the line as they would anyone getting them. It’s such a hard decision to have to make though so go through it all with your BCN and tell her all your worries.  if you want to know anything else please  just ask me. I’ll make sure I check my spam! 😆     Big hugs to all  Lisa xxx ... View more

    Hi Daisy    So glad your able to have your treatment on Wednesday. I’m sorry I’m not sure about how that works as I didn’t miss any of mine. I would think you would start where you left off but I’m not 100% sure. Hopefully one of the others will be able to jump on here and help out 😘     Lisa xxx ... View more

  Hi ladies    it’s lovely to hear how everyone’s doing.  It is all very worrying and Daisy I totally get that your feeling very anxious about having to go into hospital for your bloods. Iv got my follow up appointment with my surgeon on Tuesday and I’m feeling very much the same about having to go into the hospital.  I agree with you Julie that it must be very hard for those newly diagnosed, I can remember how scared I felt never mind with all this going on too.     Keep safe ladies xxx ... View more

Hi ladies   Daisy I’m so sorry you’ve had to miss 2 cycles I know it must be so frustrating. I also totally get how anxious you must be feeling right now with all this going on and still having to go in for treatment. I finished my chemo 2 months ago now and I’m still very anxious about picking anything up.  Wolvesgirl I’m glad your getting there with your recovery from Phnemonia. I think your totally right with not wanting to be front line, you have absolutely gone through enough! Just stay safe!  Thank you Again Shi for the tips about the eyelashes, mine are still only stumpy but there getting there.  stay positive everyone and stay safe  Lisa xxx ... View more

  Hi Shi! I certainly am but not for that reason as I don’t know it helped with that! 😃 Iv just been enjoying having lashes to put it on again 😂 thanks for the tip I’ll make sure I put in on everyday now! ☺️ Xxx ... View more

    Hi ladies    Just thought I’d pop in and make sure everyone was safe and well during these worrying times. Holly I’m so pleased your second Op went well and hopefully your recovering well from it. I had to go and have some fluid drained from my scar area.. 350ml to be precise 😆 it had got so big it looked like my boob was back! apart from that I’m healing nicely and my scar is so neat! regarding hair mine seems to be coming thick and fast all over, lashes are growing back which I’m delighted about, think loosing them was worse than loosing my actual hair. Anyway I hope everyone’s staying safe. big hugs to you and your family’s 😘 Lisa xxx ... View more

Hi Daisy  I  think we have every right to be moaning minnies! I’m so sorry you couldn’t have number 6 today.. it’s very frustrating when your counting them down and you just want them out the way.  keeping my fingers crossed for you you’ll be ok to have it next week and get back on track.  big hugs  Lisa xxx ... View more

  Hi Daisy   I’m glad I’m giving you some reassurance 😊 I hope you managed to get your 6th cycle out the way today. Im feeling ok today, movement and pain seem to be getting easier as the days go on. It’s just a strange and uncomfortable feeling really. The tiredness still keeps coming over me. I don’t think Iv ever fallen asleep sat up until now 😂     anything else worrying you or you need advice on please don’t hesitate to ask. 😘     Lisa xxx ... View more

  Hi Daisy    I know exactly what you mean about just wanting it out of you and the worry of if it’s shrinking or not. The thought of it in me i struggled with so I don’t think your alone there.  I’v an appointment with the plastic surgeon for reconstruction at the end of August. I was offered immediate reconstruction but couldn’t get a date when both my surgeon and the plastic surgeon could be together at the same time any time soon. They wanted to get the mastectomy done so I will have reconstruction done at a later date.  After my mastectomy i stayed in for one night. I could of gone home the same day if they were happy for me to but I asked to stay in for one night. Just because I felt more comfortable being where I could be looked after as I’d never had an operation before if that makes sense.  All of these things your feeling and worrying about are totally normal. We’re all here to help each other along this **bleep**ty journey.  😘 Lisa xxx ... View more

  Hi Daisy.  Its no problem at all, I remember having all the same questions in my head that I wanted answering, it’s all very scary and so much unknown! Im feeling ok thank you, tired and uncomfortable and the same as you I’m climbing the walls! Everyday is getting easier with regards to pain and movement though.   So with the Chemo I had the EC first and I’m not going to lie to you I found the paclitaxel easier than the EC. Saying that the side effects were kind to me and I didn’t really suffer with sickness all the way through. I just found the EC gave me more of a fuzzy head. Are you having the EC very 3 weeks? Make sure you drink loads of water!  Once I’d had my 4 cycles of EC i had an ultrasound scan to check progress and yes it had shrank it, so much so that they couldn’t really see anything. They then carried on with the 12 weekly cycles of paclitaxel which I finished on the 24th January. I then had my surgery on the 4th March (last week)  The choice of surgery is much the same as the chemo.. no one has to have it if they don’t want it. But yes it is needed to beat this. I had 2 tumours one 22mm and one 8mm so a lumpectomy wasn’t an option that’s why I had to have a mastectomy.  Hope thats all been helpful for you Daisy..Anything else please just ask away.  Lisa xxx ... View more

Hi Daisy    Sorry you find yourself on here with us all. My diagnosis was also triple negative Iv had 4 cycles of EC that was given Every 3 weeks and then 12 weeks of weekly paclitaxel. Iv just had a mastectomy on Wednesday last week.  Like you when I first started my Chemo back in August I thought the end seemed so far away. I can honestly say for me it’s gone so fast..Just get through one at a time and try not to think to far ahead. Once I got past half way I started counting down. How have you been with the paclitaxel so far? Any questions about anything please don’t hesitate to ask I remember only to well how I felt at the start of all this.   Big hugs  Lisa xxx ... View more

  Hi Holly, wolvesgirl and all other ladies.  So sorry to hear of your past 10 days wolves girl..it sounds awful! Glad to hear your on the mend now!  Holly sorry to hear you have to have a second surgery, at least you know what to expect this time and hopefully your recovery won’t be to long.  I had my mastectomy on Wednesday, I stayed in 1 night so got home yesterday at about 1pm. The whole process wasn’t as bad as I thought and the last thing I can remember is the canular being put in and a strange feeling up my arm then nothing until waking up in recovery saying how hungry and thirsty I was! 😂   I’m feeling fine in myself just sore and uncomfortable. Been very tired and sleepy today so just listening to my body and resting. So glad this part is over with. Another stage over with!  Big hugs to everyone Lisa  xxx   ... View more

  Hi ladies   Just an update from me. So I’m booked in for my mastectomy this Wednesday 4th 😬 had my pre op assessment yesterday. I am so nervous but keep calming myself down with the knowledge that you ladies have already been through this Part and have offered reassuring words.  Holly was it Thursday you were seeing your surgeon after your surgery? Hope all is ok now with regards to your swelling.  im still eyebrow and eyelashless but I’m sure Iv got the tiniest of hairs starting to come through.. the hair on my head on the other hand is growing like wild fire... albeit grey and fuzzy 🙄 😂     hope everyone is well.. looks like we’re in for yet another storm this weekend!!  Lisa xxx ... View more

Hi Blackcat an everyone else.  Blackcat it’s lovely to hear that your back to work. Iv been lucky that Iv still been able to do a few hours every week through my treatment. I have put my hours down from full time to 16 for the time being but it’s been my little bit of normal and it does take your mind off what’s going on. There’s been a change of plan with my surgery, there finding it difficult to get a date any time soon when both my surgeons can be together to do the mastectomy and reconstruction so I’m having a mastectomy first then I’ll have my reconstruction at a later date. I’m seeing the surgeon on Monday to hopefully get a date on that. Just want it over with now.  I haven’t lost all of my eyelashes all the way through chemo and now 3 weeks post chemo they’ve all decided to fall out! Iv got about 3 lashes on one eye and 6 on another 🙄 I hope they don’t take long to come back! Has anyone else had this happen?  Hope everyone’s ok   Lisa xxx   ... View more

Hi Wolvesgirl and everyone else   so sorry to hear about your reaction to the Zometa.. it sounds very scary! And Holly glad your op went ok and your home and recovering now.  Just a little update from me Iv had my appointment with the plastic surgeon today and I’m so undecided with which option to go for with regards to my reconstruction. Its so clever what they can do but it’s just trying to think which ones best for me. There’s no right or wrong way. The surgery just differs and also recovery time afterwards. Iv a lot to think about over the next couple of days as I really need to make a decision soon. I think your so right about the effects that all this has on our bodies. I think I thought once chemo had stopped.. give it a couple of weeks and I’d be feeling right as rain 😂 we’ve got to remember we’ve had months of this poison being pumped into us and surgery aswell. We need to be kind to our bodies and allow them time to repair themselves. Holly I’m with you on the body thing to... I was usually at the gym 4 time’s a week and now Iv put on a stone 😫 I always knew I had a lot of grey hairs but always coloured it. Now it’s growing back a fresh I can see just how many greys I have!! It’s a lot 🤦🏽‍ ♀️ So a stone heavier, very grey hair and very little eyebrows or eyelashes isn’t a look I’m liking at all 🙄 I just keep telling myself it’s something for me to get my teeth into once I’m feeling up to it.  Hope everyones ok and enjoying the sunny but fresh weather before this storm we’re supposed to get at the weekend!  big hugs  Lisa xxx ... View more

Hello ladies    hope everyone’s ok. Holly I totally get where your coming from with being worked Up about the surgery as I am too! So your totally not being a whimp about it. I’d also like to thank all the others that have already had there’s for your reassuring words. They really have helped me.  Im have a mastectomy with immediate reconstruction so I have an appointment with the plastic surgeon next week. Lovely to hear how everyone’s doing.. it was so nice not having to go in to have chemo on Friday. It’s been a week since my last one now 😊   hope to hear from you all soon. Lisa xxx  ... View more

  Blackcat!! Sorry it’s you that’s just had your surgery 😂 I blame chemo brain! Thank you to you also for your accounts of surgery and advise.  It all helps so much to hear from people that are going through it with you.   Lisa xxx ... View more

Morning ladies   Hope everyone’s ok. Hollyleaf good news on the reaction to chemo! And Wolvesgirl glad the radiotherapy hasn’t been too bad for you so far and hope that continues to be the case for you.  I did indeed have my final chemo yesterday! Who hoo!! I don’t know about anyone else but I felt quite emotional.  looking forward to having 3 to 4 weeks of no treatment before my surgery. Hollyleaf I’ll be right behind you on the surgery journey so I’m sure we can help each other through this part of it. Wolvesgirl you’ve been so helpful with your experience of surgery and really put my mind at ease about it. Iv an appointment with my surgeon on Tuesday so will have more to report back regarding that side of it after that.  have a lovely weekend everyone. Lisa xxx ... View more