Miss Green the information about the Moving Forward Course wasn’t from my care team it came from a random conversation with a lady in the Beatson cancer charity shop when I was buying a pen! I then searched on the Breast Cancer Care website for a course near me. I feel that the hospital/oncology team could do more by way of pointing patients in the right direction for follow on services although to be fair I am getting a home visit on Friday from someone on the Macmillan 1 to 1 support team to discuss any concerns that I have now that my treatment is mostly finished.
Thanks Wee Burd I shall investigate xx
Hi Macneech
Sorry to hear you’re finding Radiotherapy a pain. I have had it but it was back in 2003 and cannot remember what it was like. I couldn’t have found it too bad as I went straight into work after each session but there again maybe time as dulled the memory lol.
I agree with you on wanting regular scans. I wish they did ultra sounds on reconstructed boobs. I asked my BC consultant if I will have an annual one now due to having 2 recurrances and neither of them showing on a CT. He said no it will be still down to manual checks. Xx
Morning - sorry to hear the radiotherapy is uncomfortable for you Macneech - I am starting Monday and have the usual apprehension waiting to start a new treatment- hope you can get through it without too much discomfort. I need to read through stuff again - I had forgotten people say to take paracetamol beforehand- thanks for the reminder.
It would seem sensible to have yearly scans - I guess it all comes down to cost and also balancing effect of scans on body v finding something.
Have a good weekend x
Hi macneech, miss green and bibi
Macneech - I finished radio last month . Found it a bit uncomfortable and tiring but not as bad as chemo .i had radio to neck chest and axilla, by week 2 I had a terrible razor blade throat and used dissolvable paracetamol. The worse thing I had was reflux issues I had this during chemo. I rang the radio unit was told by one person it was connected as had radio to the neck area but then told by another it is not connected . Last week I had a gastroscopy which thankfully wasn’t sinister and if I watch what I eat ie not rich or greasy food it helps . The other prob I had and still have is pain on my side that I couldn’t wear a bra for 4 weeks and it still hurts. It Has affected my sleeping and goes along my ribs to chest bone and then across chest . Make sure you cream all your body religiously during radio and cover up although it will be easier now the sun doesn’t come out so much. I Went to moving forward course yesterday was great saw lymphodema nurse who said to moisturise affected arm every day and do exercises for life .
Also macneech I totally agree with you re CT I asked the same question and was told only if I have symptoms to which my reply was ‘it could be too late then’ as I am triple negative I feel even more paranoid as there is a higher risk of return in the next 3 years and Seeing what happened to the beautiful Rachel bland radio presenter recently I have turned into an anxious paranoid blob .
Has anyone still got nail issues and peripheral neuropathy ( still bad in hands and feet). Pins and needles wakes me at night.
miss green- why they can’t do an u/ sound is crazy as it wouldn’t even be a radiation risk to you. I believe it is cost issues. Was your 2nd occurrence far apart and was it a new cancer?
bibi- I wish you luck and that time goes quick for your radio. X
lovely to hear from you all good luck in your journeys x
Hi All!
Macneech I had radiotherapy in July. The first few treatments took longer while they took extra images but after that it was just once a week that they took an extra picture. Once things got going the treatment didn’t take so long. I had good mobility in my arm after surgery which helped but I also found that stretching exercises helped.
I found it much less tiring than chemo but was still quite tired and had a nap every afternoon.
During the treatment I didn’t really have anything more than reddening around the breast but it looked much more burnt over the 2 weeks following treatment especially in the crease under my breast. The skin actually went almost black (I am ordinarily very fair skinned and don’t tan easily). I couldn’t wear a bra or even the soft crop tops that I had and the skin was very broken. Moisturising didn’t help very much but the women on my Moving Forward Course had been given something called hydrogel (I think that’s what it’s called) and one of them gave me what she had left over and it gave instant relief. It’s designed for burns victims. It’s worth asking for.
Miss Green as far as I know I will be called in annually now for a mammogram but not a CT scan.
Chrissy my nails are still breaking although they aren’t as sore as they were last month. My toenails are now starting to look as if they are going to start breaking.
How is everyone’s hair? Mine is thickening up although it’s growing much more slowly than it used to and it’s now going weirdly curly which it has never been before!
Wee Burd - it’s 12 weeks since I had my last chemo and my hair coverage has become more dense over the last 2 weeks. It now looks like I have chosen the skin head look rather than looking like a cancer patient.
Chrissy - I can imagine being triple negative and hearing about Rachel Bland must have knocked you for 6. I followed her on twitter and I can honestly say I was emotional over her death. My 2nd recurrance was 3.5 years after my 1st recurrance. It all stems from my original cancer that reared it’s ugly head in 2003. This time around they also think it spread to my chest lymphnodes and right lung. Chemo seems to have sorted that out for now but wasn’t completely successful on the boob area. I will be having another WLE on my recon at the end of Oct.
Xx
Hi weeburd
lovely to hear from you your hair looks quite thick in your picture. I describe mine as looking like action man and it seems to be growing fast and is straight how I was before but grey ?.
miss green omg I can’t believe what you have been through once is enough for anyone. Excuse me for my ignorance so is this secondaries that you have? How did you know it came back what symptoms did you have? Will you have more chemo after WLE (is this wide lobe excision?) I hope you are coping ok it’s really hard when treatment finishes as the emotional part seems to then kick in.
I wanted to ask everyone have any of you still have lead legs I call it . When I sit down it is difficult to stand for a few moments and they ache . I used to be really fit when I do anything now they ache I feel like an old granny !! Sorry to any old granny’s out there ! It’s the top of my legs !
Hi weeburd
lovely to hear from you your hair looks quite thick in your picture. I describe mine as looking like action man and it seems to be growing fast and is straight how I was before but grey ?.
miss green omg I can’t believe what you have been through once is enough for anyone. Excuse me for my ignorance so is this secondaries that you have? How did you know it came back what symptoms did you have? Will you have more chemo after WLE (is this wide lobe excision?) I hope you are coping ok it’s really hard when treatment finishes as the emotional part seems to then kick in.
I wanted to ask everyone have any of you still have lead legs I call it . When I sit down it is difficult to stand for a few moments and they ache . I used to be really fit when I do anything now they ache I feel like an old granny !! Sorry to any old granny’s out there ! It’s the top of my legs !
Hi Chrissy
Yes that is secondaries. Well they think they were which is why I had chemo. I found my both recurrances by self checking my boob. Each time I thought I felt small lumps. Must admit I am not gentle like the professionals when I check. The BC Consultant even struggled to feel them but luckily they didn’t just dismiss me and did an ultrasound. We honestly thought the areas I felt were scar tissue or fatty lumps but there again on my initial diagnosis back in 2003 the consultant thought it was fatty lumps. Seems to be a theme. Yes the WLE is a Wide Excision. I don’t ever want to scare anyone with my experiences but cannot say enough to ladies “check check and check again” xx
Hi Chrissy
I am chuffed to hear you went and bought yourself a straw hat. I have worn mine so much this year it’s getting a little battered.
Yes my recurrances are on the same side as my original diagnosis. Back in 2003 I had a mastectomy and immediate reconstruction (fat taken from my stomach which I think is a DIEP). I lost my nipple too but have a beautiful flower tattoo in it’s place. Because of tumour locations and my lymphnodes were involved they gave me chemo and radio. I had a WLE in 2014 on the same boob but just put back on Tamoxifen and then at the end of Dec 17 I found out in was back. This time it also spread so it’s now called Metastatic BC. The chemo seemed to work on the areas it spread to.
I think anyone who’s had a serious illness get really anxious. It’s normal. Checking your boob is a good thing so never beat yourself up for doing that xx
Hi everyone - anyone having Herceptin injections?
Hi Bibi I’m on herceptin injections. Had my first 3 along with the docetaxel and also had tummy issues however they cleared up when the chemo stopped. I’ve had another 5 since then and haven’t had any noticeable side effects after the injections. I’m on tamoxifen just now and will be changed over to letrozole after 2 years. Mainly I get hot flushes and can’t seem to shift any weight off but nothing else that seems to be from the treatment. Hope you get to the bottom of it.
Hi Bibi
I have had about 12 herceptin injections now, and am on letrozole, but don’t ever get nauseous. I’m also on zoladex to make sure i am post-menopausal. I suspect it is more likely to be the rads making you feel unwell. How far through are you? I finished my rads at the start of June. I didn’t get any side effects apart from skin peel as though i’d been sunburned. I was more tired from driving from home, to work, to hospital and home again, as I did all driving for all but 3 or 4 of the 20 sessions and live 40 miles from work and 50 from hospital.
Best wishes to everyone. I haven’t posted much as I have felt pretty much fine and well throughout, and finished chemo before most of you, because I was having only 4 sessions. The herceptin was more important for my treatment plan. Just waiting for an appointment for ovary removal now.
xxx
Thanks for your replies Flora and Wee Burd - I’ve had the 4 Herceptin with chemo and 2 injections so far - still 12 to do. The radiologists are adamant rads don’t cause nausea so I’m at a loss -nausea is listed for Letrozole and Herceptin so who knows??♀️ I suspect it’s the Letrozole as I have it fairly regularly in the morning but it has been worse since the Herceptin jab last Friday. Just having a feeling sorry for myself day as I felt so bad - loads of people say how easy rads is compared to chemo and yet I’m feeling rubbish and tired. And my boob is starting to cook - very pink. Cant wait for it to finish - sorry for rambling moan - hope you are all OK .
Hi Bibi you’re right to rant and where better than to people facing the same sort of worries! Sending hugs and hoping you get to the bottom of what’s causing the nausea. I was okay on radiotherapy other than feeling tired and then had the burning about 10 days after the end which was really uncomfortable for about a week.
Have you checked what the filler/binders are in the letrozole tablets? If there’s something like lactose in them that could affect your tummy. Maybe a different brand would be better for your insides? Fingers crossed that things improve soon.
Hi Chrissy68
Sorry for the late response. I have been on a well deserved holiday.
Glad your hats been getting some use. Yes in 2014 and 2017 my recurrances were both in my reconstruction. Just unlucky I guess or maybe lucky as I found it.
I agree with you they should teach it in school.
I worked a few days in between each chemo cycle and since my last cycle in June I have been in work everyday with the exception of hospital appointments and annual leave. I started working around 4 to 5 hrs each day and then built it up to full time by having shortened lunches. I am meant to be at work for 8.30 but don’t get there until 8.45 as it means I can get a later train. Getting there on time means getting a train 50 min earlier. I do like my sleep.
Xx
Thanks for your replies everyone - I feel so much better today - think Im just going to keep a diary of what’s happening and see if it I can spot any patterns. Only 6 more rads to go now so hopefully can soon eliminate that from possibilities. The Herceptin injections are every 3 weeks and I have 12 more to go so hoping it’s not that , but also hoping it’s not the Letrozole as I’ll be taking that for years ! But if it is that Inwill try a different brand like you suggested Wee Burd. Sorry to hear you are not feeling so good Christie - hope you can sort it out.
Nearly the weekend - looking forward to not having to go to hospital for 2 days . Have a good weekend everyone x
Hi macneech
im sorry to hear what has happened to your skin despite all your hard work using creams etc that doesn’t seem fair. I think you are right about paranoia it is really hard and I too find it hard switching off . It makes you wonder if it is a cost cutting exercises to not offer scans. I hope work goes ok for you try not to do to much. Hello to everyone else hope you are all coping ok and that you are starting to feel a little better it’s been such a long year ! Xx
Hi everyone- oh macneech sorry to hear your skin has reacted so badly - hope you recover soon.
I finish my rads tomorrow- had a slight delay as machine broke one day - you are right Chrissy it has been a long hard year - I’m feeling worn out and can’t wait to ditch these long daily drives to hospital.
I haven’t had any big skin reaction to rads but am getting nervous now that it might still happen.
I still have the 3 weekly Herceptin injections for a while yet (12 more) so will be having associated heart scans and meetings with oncologist so won’t feel like I’m at the end till that is completed but obviously a lot less active treatment going on. In a way going through treatment has felt secure because you know they are doing something and monitoring you closely, finishing it and then not getting monitored will be a big step and I feel I will need to build my confidence up to feel ‘normal’ again. I’m wondering if other people will appreciate that and not just think my treatment is finished and everything is the same again.
Take care all xxx