Breast Cancer Now Forum

Hi Gemma   I find it confusing too, it’s hard to know who is replying to who!!  I’m so pleased to read that you are doing well. I finished my SRS on 16th Sept so 5 weeks ago, I’m still weaning off the steroids. Starting 0.5mg today for 1 week then off!!! I’m still feeling awful, still got left side numbness and tightness which I’m hoping is the steroids making it worse. I seem to have developed a fat pad at the back of my neck which is from steroids. I’ve got no energy, I have the odd ok day then I’m back to feeling rough. I’m just praying once the steroids get out my system things improve. Thank you for sharing your story, it gives me hope. Any tips you have would be great. take care and enjoy your girls being off school. I need to find some energy for my 3!!!  take care Debbie. X ... View more

Hi Great to hear from you. It sounds like you had your radiosurgery 1 week before I finished mine.  I’m still weaning off these awful steroids. I was on 16mg and 3 weeks later I’m down to 4mg. I’m dropping 1mg every 3 days.  I still have my left side numbness, which is worse in my head, neck, cheek, shoulder and ear area (this is coming from the brain tumour), but I feel like the steroids make this area much much tighter. During the day it’s worse then eases slightly as the day goes on.  I really want to be off the steroids so I can see what my side effects are going to be. Before I started the steroids I had numbness but not like this. I was still walking my dog and living my life. I can hardly walk down the stairs now!!  I think you are doing the right thing staying off the steroids and working through the withdrawals. For me it’s hard to know at the minute which are side effects from brain tumour nerve damage or steroids. I’m just all over the place. I haven’t been out the house for weeks because I look and feel bad (apart from radiosurgery and scans!!)  Let me know how things go for you, I really hope things improve soon. Xxx ... View more

Hi All It would be great to hear from others with brain mets and keep this post going.  There doesn’t seem to be many of us on this forum but any advice would be great. I’ve recently been diagnosed with brain mets and I am currently on my 4th radiosurgery session, 1 more tomorrow!  It has been a worrying journey so far and I just pray things will start improving.  Ive got really bad numbness on my left side, I’m on high dose dexamathasone which don’t seem to be improving it and steroids bring there own side effects too.  I’m terrified all the nerve damage has been done and I’ll be permanently numb. I’m 48 and I’ve got 3 children (11, 9 & 9). My history is primary breast cancer 2016, FEC-T chemo, surgery and 15 x radiotherapy. HER2+ , ER.  Aug 2020 brain mets diagnosis. No other spread but waiting confirmation of back MRI. Would love to hear from fellow brain mets warriors.  x ... View more

Hi all, So sorry I've been so quiet, I hope everyone is well and had a better Christmas this year. Wow what a year we have all add and I couldn't of done it without all your support, you've been great. Last year on New Years Eve I saw my oncologist and signed up for chemo, I then went to try wigs on!!! I remember at midnight crying because I didn't want 2016 to happen and here we are at the end of it. I'm so happy to be waving bye bye to this year. I do feel like I've become a stronger person though, I've learnt a lot. Wishing you all a happy and healthy 2017. Take care Debbie xxxxxxx ... View more

Hi Everyone Pleased everything was ok with your review Mechele and Clare sounds like you are doing amazingly well. I have my last radiotherapy tomorrow and I've decided I'm definitely ditching my wig too. I've found rads a lot harder than I thought I would, I ended up getting a cold last week and it totally knocked me. I'm feeling a bit deflated too as I had to have a ct scan to recheck a nodule on my lung that was picked up when I was diagnosed, I got the results yesterday and it shows it has grown by 1mm so they have decided to do another scan in 2 months. I feel like my treatment has been extended by 2 months whilst I wait for that. The BCN said it could be that 2 different people reported and measured different, the nodule isn't a worry because lots of people have them, it's if it's growing that it needs investigating. I'm so looking forward to finishing active treatment and trying to get my body back to feeling ok. I hope everyone else is well. I enquired about doing a stress management course at our local Maggies centre. Has anyone else done one? Lots of best wishes. Debbie xxx ... View more

Cassy, I'm thinking about doing the same. My wig has been great but I'm fed up wearing it now and it's far too hot for wigs. I just need to be brave!! I have my last radiotherapy on Thursday so I thought I would do my last one without my wig as a 'end of active treatment' celebration!!! My scalp is covered but it is slightly shorter at the front, it is dark and grey!! I hope everyone is doing ok. Debbie xx ... View more

Hi All, good to hear from everyone. Fiona I hope all is ok with you, best to get to the doctors and ask them. My legs ache most of the time, really bad if I've been sat down for a little while, I think it's definitely chemo related but I also get herceptin every 3 weeks so don't think that helps. My nails are ok, some look like they've lifted but like Kim they appear quite strong so think they might stay put! I have 1 black toe nail, well I think only 1 as I've had nail varnish on them for a few weeks!! My hair is growing back ok, I put a no1 through it to even it out and get rid of the fluff. My eyebrows and eyelashes are growing well too. This is all 11 weeks after last chemo. I still feel quite tired though. I had my 1st out of 15 radiotherapy sessions yesterday and all was ok. 1 down 14 to go. It's going to be a busy 3 weeks juggling radiotherapy, kids school stuff, kids finishing school and husband working away!!! Roll on 28th July for my last session, then we are going away on 30th July for 3 nights. I've got a CT scan on 18th July to retest a small nodule on my lung from my CT scan on diagnosis in Dec, so that is really worrying me at the minute, I just want to hear the 'all clear'. I've noticed my skin has changed, it's like it's got tiny bumps all over, it used to be really smooth!! Has anyone else noticed this. It could be chemo, herceptin or tamoxifen related!!! Keep going everyone, Chemi is slowly becoming a distant memory. Love to all Debbie xx ... View more

Hi Everyone, Congratulations Sissy and Kim for finishing rads and Elizabeth for finishing chemo- (you've caught Fiona and me up) it must be such a relief for you. Fiona- how are you getting on? I'm now 4 weeks since surgery and back driving, ironing, housework, like it never happened!!! I meet my oncologist on Monday to sort rads, I'm hoping to get started by beginning of July then I'll not clash with school holidays too much. Kim- my legs are still very achy and heavy, I have been trying to get out for walks but I do think it's still chemo. My finger nails are sore, I do think I might loose a couple, I'm also struggling with my fingers, picking things up and doing buttons etc, they are not sore just feel weak. My hair is growing, but I'm still quite away off ditching my wig, I'm desperate to stop wearing it. I've just taken 4 tamoxifen and everything is fine so far. It's been great having everyone here, I don't think I could of managed without all your love and support. I'm not going anywhere yet though, think I'll be hanging around for a while yet!!! It's great we are all getting there and gradually resuming life back to some sort of normality. I booked a week in Scotland for the family yesterday, not till end of August but it's something to look forward to. Hope everyone has a great weekend and we get some sunshine!! Love and hugs Debbie x ... View more

Great news Fiona, take it easy. Love and gentle hugs. Debbie xx ... View more

Fiona- so pleased all went well, hope you had a good nights sleep. How are you feeling this morning? Take it easy and get lots of rest. Did you have reduction on your good side at the same time ad lumpectomy. It's 3 weeks now since my op and I'm doing ok, movement is good, I'm getting a bit bad at forgetting to do my excercises though! The hardest thing is stopping myself doing things once you start feeling a little better, difficult with 3 kids to look after!!! Claire- so pleased to hear you being so happy, everything is on the up!! I know exactly how you feel about Tamoxifen, I got my prescription last Thursday and I haven't started taking them yet, I'm dreading any side effects, I know there might be non, but also the thought of taking them for 10 years!! When were you advised to start taking them? My BCN said to wait a week or two if i wanted, I think it is so many weeks after chemo that you are meant to take them. D xx ... View more

Thinking of you Fiona. 💗 💗 💗 ... View more

Good luck Claire with your 1st rads and keep on trucking everyone else you are fast approaching the finish line. Fiona how are you feeling about surgery this week? Is it on Wednesday? Not long left for you Elizabeth. Are you having rads? I'm getting fed up wearing my wig too Kim, my hair is growing but it's a while before my scalp is going to be totally covered. I'm not sure when I'll be brave enough to stop wearing it!! I want to buy some new glasses but I'm waiting as I want them to suit my short hair!! It's a beautiful day here too and the kids have just gone back to school after half term hols so I'm going to do some sorting! Have a good day. Debbie xx ... View more

Sissy- The team are meeting on Monday, they didn't have there normal meeting last week as it was bank holiday. Let me know when you are up north and if I can I'll meet you for a coffee and chat. Xx ... View more

Good news, just met with surgeon to get my pathology results and all is good. He took 4 nodes and all were clear, my tumour was 40mm compared with about 70mm before chemo , he is meeting with his team on Monday to discuss whether I need radiotherapy, he thinks probably and I said I would prefer to have it. I also got my prescription of tamoxifen to start, didn't expect to be taking that until after radiotherapy. We are out for lunch celebrating, with a glass of wine of course! Such a relief as I was sure it wasn't going to be so good!! 💗 ... View more

To those that had the full node clearance, how was surgery compared to single mastectomy, is recovery the same time, and how long did you have to wait for 2nd surgery? I too need to look into doing a moving on course. I try to stay positive, but every so often I have a really bad day and my mind wanders. Waiting for results doesn't help either!!! It would be great to meet up but I'm near Newcastle!! Maybe a little far! Debbie xx ... View more

Hi All, It's so nice to hear that we are getting on ok. Rads seem to be going well too. I'm doing ok, improving each day, I'm trying to do my excercises 4x a day which is helping and bruising seems to be going down. I meet with my surgeon on Thursday for my pathology results, I am a nervous wreck, I really really hope I don't need more surgery for full node removal, did anyone else have to have this done? Fiona, when do you have surgery? Elizabeth, hope you are doing ok and what is your last chemo date? Love to everyone. Debbie xx ... View more