Breast Cancer Now Forum

Thanks Helen and Natalie. There was no evidence of mets in the CT scan. Because this would have picked up bone mets in my spine and rips my onc says there is no need for a bone scan as it's nearly always in the spine first. I was upset by this at the time as I feel I need to know that my leg and hip pain is not mets, but I'm resigned to it now. I have to assume it's not mets. It's not the sharp pain some of you described. If I wasn't on codeine I'd probably have ended up at A&E at some point though. The tricky thing for me will be knowing when I should get any pain looked into. I'm guessing the pain will be much more intense and feel like a broken bone. Thank you all for your replies xxx ... View more

Eilily, I stopped tamoxifen as I was in too much pain! I also take duloxetine for pain - I tried to come off that once and the pain was awful. I worry that I'm controlling the pain with meds well enough that I'm not seen to actually be in much pain! I'm glad your mets are under control x ... View more

Thanks nicky08. I didn't realise bone mets could be picked up on a CT scan. It's just my abdomen and pelvis - but I guess that would cover ribs hips and spine? Interesting about the muscle ache. Because my muscles ache too, which they say is fibromyalgia, they say the bone pain would be the same, or it's just the tendons attached to the bone. I'm frustrated as much as anything and it makes me feel very small to keep telling gps and oncologists and surgeons and haematologists and rheumatologist that I'm in pain, but they all dismiss it. I feel like I'm being unreasonable and neurotic wondering if it's cancer spread, but it's perfectly possible. I'll see how it goes on Thursday and try my best to ignore it until then. Thanks again. Xx ... View more

I've been in pain since chemo 2 years ago which has been "diagnosed" as fibromyalgia, but I've been told neuropathy can sometimes be achey and weakness rather than just the pins and needles/loss of feelings in hands and feet. As well as codeine, I've been on duloxetine and hasn't realised how effective it was until I tried coming off it and all the pain returned. I think its less 'groggy' than pregabalin - maybe something to ask your gp about. ... View more

I rang the breast clinic and they were as unhelpful as ever. I have to go through my gp, so a 2 week wait for that then the gp wont know anything about bc related lymphoedema anyway, I bet. Im wondering if it is just actually cording? I had this initially but it ended up going away and causing no pain at all for months - although I can still feel the cords. The main thing is the stretching and reaching pain. Awkward moments at the markets when it looks like I'm being uncooperative by not fully reaching for my apples over the stall. But maybe it is mild lymphoedema. I bet the gp will say wait and see ... it doesn't look swollen. ... View more

I used the NHS Predict tool - 4.5% over 5 years, 9.8% after 10 years. .. ... View more

Thanks for the replies. I wish I could find out my percentage ... If it was only 3% I'd stop it. But part of the problem is I couldn't ask my Onc even if I wanted to. I saw the Onc at the beginning of radiotherapy when he told me tamoxifen had no side effects, the Onc registrar spent 2 mind with me halfway through rads, then that's it for 2 years. But I'll call the BCC helpline. ... View more

I really want to stop taking it. My oncologist was adamant that Tamoxifen has no side-effects. I feel awful all the time and so worn out by the hot flushes. They're so regular and so intense. When they come on when I'm talking to people I don't know what to do - my face literally starts dripping and I have to wipe it dry. I'm going to be taking soon and so nervous about sweating ... About having to take tops on and off ... About the sick and prickly feeling that goes along with the flushes. My bedroom stinks of sweat. I can't wear make up. My body aches so much I don't know how I can stand up to teach ... So I want to quit. There's no point talking to a doctor - I have no faith or Trust in them. Nobody had told me exactly how much tamoxifen will help me. I'm just scared to stop ... argh I hate it. I've had three flushes while writing this - off to go drench my hair and gave in cold water ... ... View more

Yay mandyj!! It's good to hear that the rads didn't affect you too badly either - aside from the MS blip - and it's really lovely just to hear you sounding so happy! Interesting about the cream though - I'm not sure what to do. I brought aloe vera cream but the radiology team told me to just use aqueous cream ... I'm not very good at breaking rules! I start my 15 rads next Tuesday. Started tamoxifen a week or so ago. Hugs to all! xx ... View more

ha, mandymid and.swoot you are right! Ive changed into two humans now 🙂 rambling nonsense in two places! mandyj I am also happy rads are easier than chemo, though more frequent night sweats won't be fun. I will join you in that pool mandymid. I've drunk once during chemo (well 3 weeks post last one and just 1.5 pints) and the sweating was awful. I hope that vitamin c kills that.cold soon swoot. strangely enough, while I've been neutropenic I havent caught anything despite being in crowded.shops, at a conference and living with my daughter who has had one vomity flu thing and two colds and leaves snotty tissues everywhere. weird. okay - happy goodbye to 2012¡ ... View more

Hi everyone, merry Christmas and happy new years to you all! I ended up having a lovely lazy happy Christmas with my beautiful daughter. Tonight's new year will be a bit of an opposite though - home alone feeling very sorry for myself. I finished chemo mid-nov and had my node clearance 12 days ago. I have a massive seroma under my armpit (like a c cup breast) and some cording - both of which are veI uncomfortable .... But, the nodes were clear! Yay. However, my neutrophils are still very low which is odd. They were 0.58 during surgery (surgeon was a bit freaked out by this and wouldn't have done the surgery if she had known), went up to 2.4 the day after surgery, but last Thursday were back down to 1! Over 6weeks after last chemo! Anyway, I am far. From feeling normal. But I don't know what normal will feel like and am not sure if I will recognise it. I don't know when I am am goingtoget over this pity party and self-enforccedisolation from the world. Seeing onc in a couple of weeks to talk about next steps ( rads and tamoxifen I assume). Luvvie - hitting a wall is very apt. Grr - forgot how hard it is to type on this forum with the iPad .. All the autocorrects and silly things it does. Anyway, it is lovely to read about how you are all doing, and nice to hear about nice Christmases. Sending lots of hugs and hopes for 2013 being a hell of a lot better than 2012 xxx ... View more

I agree with the suggestion it is pulling on a nerve. This happened to me and I had the drain removed (not much was draining so i was lucky in that sense). It is excruciating pain and well beyond the 'normal' surgery pain, so tell your nurse! ... View more

Good luck with the cake MandyJ! I know what you mean about forgetting about gettingthrough the last chemo. Mandymid, sorry to hear you have been back in hospital and the injections don't seem to be working for you. I am sure your hospital stays are far more expensive than neulasta. I will be sending virtual neutrophils your way 😉 Hope everyone else is doing okay? I won't write more individual messages as the iPad does horrible automatic things that makes typing really really slow and excruciatingly frustrating. I am booked in for my axillary node dissection on the 18th. Woohoo. Not. So worried about lymphoedema. Head is quite fluffy though! ... View more

thanks for replies. I had heard about the numbness, but they dont really feel numb. kind of burn-y tingly, and like i have been wearing shoes two sizes too small. i did have pins and needles and numbness after the first tax, and shooting electric pains on the top of my feet (and similar all up my legs), but this is gone now. has anyone else had non-numb peripheral neuropathy? might be worth trying vit b in any case. 6 months is a long time Leigh - for the numbness/pain, and for nails to fall off. thought things settled down sooner than that. you're right merc that all this is worth it. i am just being a bit neurotic about things .... panicking about not being able to walk properly. my legs are also pretty useless at the moment, but i'm used to this. ... View more

mandyj - That's a lot of messing around with dates, and seems to be very early for the pre-radio stuff! I imagine you're right about them trying to fit things in before Xmas. Last chemo on Weds - yay! Congrats swoot! All done! Hope all is going well 🙂 I've joined the FB group by the way! It is great. Victoria - I'm really curious what it means to be on the boobette team?! Hugs to you, ((jackster)) mandymid - good that the SE aren't too bad and I hope your bloods sort themselves out somehow! I also worry about every single ache and pain and worry that I will always worry. I guess if there is any good side to this, it's that they will always check things out for us, thereby putting an end to the worry. I had back ache before all this, but there's times when it has seemed treatment related. Certainly in the days I have the injections my back is very sore. I had my last chemo ten days ago. Of course, as per usual, I got a temp on day 5 and spent three nights in hospital. It was silly being in there though as my temp went down again soon after I was in, and I wasn't even neutropenic! But the onc wanted to run more tests to see if there is something viral going on, seeing as my temp spiked pretty much every day last cycle. It has spiked again on each of the last three days. Just low-grade, and only for a couple of hours each day. Still no explanation. Either the reduced dose or the reduced steroids made a big difference to the emotional side-effects this cycle. Given that I had similar physical SEs and pain (in fact, the pain and weakness was nearly as bad as the first round this time - my body completely collapsed on me one night - legs and arms just gave in and I was on the ground), I think the steroids were responsible for the emotional mess I was in. I'm still miserable, and very very anxious, but it's different to the post-tax feelings. Struggling to do work, or do anything really. I rang my BCN for the first time today and she was really really lovely. She's referring me to psycho-oncology. I am meant to go to an event at work on Wednesday. It's quite important that I go. But it's with people who have no idea I've been having cancer treatment. There will be talk about activity that I would have been doing had I not been diagnosed. I'm worried I will cry. And goodness knows what I will do with my eyebrows. One brow has way more hairs than the other which has basically none. And there's three stubborn little lashes in the middle of my lower lids. It'd be better with none at all. Good news is that I have a relatively lush head of fluff!! I have an appointment about my node clearance in a couple of weeks. The surgery will either be just before or just after Christmas. I thought it wouldn't be until January! Apparently they like to have the clearance done no longer than 6 weeks post-chemo. I don't know how long they leave between surgery and rads, but this does mean I could have the treatment all finished by Feb/Mar! Except for the hormone treatment ... ... View more