Breast Cancer Now Forum

Minty27 I sent you a pm don't know if you read it? X ... View more

Similar situation happened to me I was HER2 negative on my pathology report but the Oncologist read it as Positive so I was given 11 IV's of Herceptin before it was noticed! I had severe SE that effected my quality of life, I needed counselling after it as I felt that I had been let down badly by my team, it did help to talk to someone, I am sorry this has happened to you too xx ... View more

Li Li ring your BCN today, I felt that my right sleeve on my shirt was tight, just a little thing really, so I rang my nurse and she referred me to the lymphedema nurse, when they measured my arms the right one was 17% larger than the left, it was just mild lymphedema and hopefully wearing the stocking and doing the exercises I am getting it under control, I am so glad that I rang the nurse as I had thought I was just imagining it all and felt a bit silly as my arm was not massive but it was very tender in the inner arm, I am so glad I made that call good luck x ... View more

Hi DD I had the same op as you Jan 2012, it is much worse pain wise and the numbness can always stay that way, my underarm is still like that but I don't notice it as much now, also you will getting shooting pain in your breast area this is from the nerves that have been cut under the arm all totally normal, my advice to you is to keep up with the pain relief and do the excercises every day keep that arm warm as I found cold air kicked off pain so I used a wrap over my shoulders if we went out to say a resturant some times the air con is drafty. look after your arm I don't put my hand in really hot water. I wear gloves in the garden becareful with any scratches or bites on that arm, Cry as much as you need to, its a great stress relief for the body and again it's totally normal to feel down. Talk to your BC nurse they are a great help in how to get through this tough time, sending you cyber hugs x ... View more

I would defiantly go with the study, why put yourself through chemo when it might not have any benefit for you? I wish I had been given a choice, as chemo was very unpleasant and I am still suffering from the side effects over a year later. You don't say what type of cancer you have? I have been reading up about this oncotype test they seem to do in the USA but don't seem to do it here unless you are very young as its costs so much money. ... View more

Well I put in a complaint as I was misdiagnosed and given unnecessary treatment over a period of 7 months, Pals was a joke and clearly on the hospital side! I just got the standard letter saying that new practices are now in place so it won't happen again, I asked for all my notes to cross check them and was surprised as to what was in them, a liver scan showing lesions was not followed up and a heart scan was missed the oncologist said please can you schedule this as it looks like they have been missed, yer by 4months, thank god the lesions were benign and my heart scans were not showing to much of a drop, this all happened in feb this year, last Thursday I had an appointment with my surgeon as he is looking after me as Don't wish to be under the oncologist and he was definitely hostile, I just despair with it all, I feel I don't have anybody on my side, so is it worth complaining? ... View more

I have to say I tried a few different brands of Leterozle and for me Teva was the best, I still got the joint and muscle pain but not as bad with Teva. ... View more

Hi Lynne, my joint pain was unbearable, found it hard to dress myself turn over in bed walk down the stairs etc, my onc and his team ignored it really, my sisterinlaw came to vist me and couldn't believe the state I was in I was crying with the pain! She rang the GP and I had a conference call with her, she put me on Gaberpentin and I have to say the pain inproved, it never went away but at least I was able to cope. my Herceptin was stopped in January I had 11 of them and I have to say each day got better, I am still on Gaberpentin but just take one a day instead of two, but if I forget to take that one tablet the pain is back! I also take diclofenac as and when needed but a least one a day, I feel for you, but I think you will find its nerve pain that you have and not joint pain! Your symptoms sound just like mine, ask your GP about peripheral nuropathy! ... View more

I feel so much better after reading the above posts! As it seems most patients are just dismised with a see you in 6months! After so many cockups with my treatment, I don't wish to have anything more to do with my oncologist, My surgeon has said that he is prepared to see me every 6 months but he would not be doing any scans or bloods, and would only check on this if I had any symptoms, but of course at anytime if I had anything worrying me he would more than happy to see me to discuss the next step, I am on Leterozle at the moment I do have bone and nerve pain but I am coping with that, I just thought that maybeI was shooting my self in the foot by not seeing a oncologist once a year, but it seems that this is quite the norm, my surgeon has said that if he needs advise or for me to see an oncologist then he is quite happy to work with another trust. You do feel abandoned! It's quite scary really, I really do think you should have some sort of meeting with your Oncoligist/ surgeon/ BC nurse to put your mind at rest as to what happens next, I have had that meeting now with my surgeon, but that only came about as I needed some answers, after my appalling treatment with my oncology hospital and I was thinking about taking legal action, but if this had not come about I to would have felt abandoned. ... View more

I feel so much better after reading the above posts! After so many cockups with my treatment, I don't wish to have anything more to do with my oncologist, My surgeon has said that he is prepared to see me every 6 months but he would not be doing any scans or bloods, and would only check on this if I had any symptoms, but of course at anytime if I had anything worrying me he would more than happy to see me to discuss the next step, I am on Leterozle at the moment I do have bone and nerve pain but I am coping with that, I just thought that maybeI was shooting my self in the foot by not seeing a oncologist once a year, but it seems that this is quite the norm, my surgeon has said that if he needs advise or for me to see an oncologist then he is quite happy to work with another trust. ... View more

Hi Cheeko I am not in as much pain as I was, but I have put that down to the Gaberpentin that I take, at first I would have to take the day off after treatment as I was so stiff and sore, the ninth and ten treatment I just did a later start time for work I am still very tired and rest up when I get the chance, I also take paracetamol 4 times a day or cocodalmol or diclofenac as a needed depending on my pain, the night time is the worst it's still painfull to turn over also my arms and hands go numb if feels like I have boxing gloves on, so if I wake up I am unable to hold a glass of water as I carnt feel it. I work 30hrs a week it's not been easy, I work in retail so lots of standing to be honest it's when I sit down then try to get up I hobble around and find it hard to stand tall, I am just getting on with it to be honest, I was able to get a disabled badge for parking and that has been a god send as it has given me back my independence. ... View more

I started with this while on chemo and it got worse when I started on Herceptin, my Onc was not very sympathetic to my pain at all I was unable to cope with the simplest of tasks like dressing walking getting up off the bed without horrendous pain, my Gp was fantastic and said I had Chemo induced nerve pain, (CINP) she put me on Gaberpentin twice a day and it has defiantly helped, I don't think I have slept a good nights sleep in months as the pain still wakes me up In the night, I am also on Letrozole and this also has side effect of bone pain!! I do manage to work, at the moment the pain is at its worst at night, so when I come home I don't sit down I do what I have to, because if I sit I find it hard or to painfull to get up do anything then I just sleep most of the evening. I have tried talking to my onc but he just says well we can stop your treatment!! But that's not the answer in my case,so I just get on with it, I am half way through my Herceptain another 9 to go . ... View more

I just wanted to say that I knew Dulcie,Carol quite well. My chemo started in Feb but I always read the march posts, and Carole was always so funny with some of the tales she told, when I was in hospital last year I overheard this lady talking and I just knew it was Dulcie, we would text and ring each other and she always talked about you ladies, Carol and I shared had the same oncologist and surgeon so always had plenty to talk about!!! I wanted to tell you that you were all a great support amd comfort to Carol and one time when she was to ill to post I would tell her that you were all missing her and wishing her well, and that would give her the boost that she needed, it was a pleasure to have known her and I am very sad to hear this news as I really didn't think it was her time yet as she never lost her vibrancy for life. I will still be reading all your posts, it's taken me all this time to reset my password!! so maybe know I can join in! God bless you all x ... View more

Carol I met you in Hospital last April, I knew you were Dulcie right away! You were flabbergasted that I recognised you!! And we stayed in touch supporting one and other, You made me laugh with you sence of humour And you never lost it, I last spoke to you near the end of November and you still had your funny tales to tell, I am sure you and John won't mind me shareing one of the tales, you sat at my bedside at the hospital last year and I got some visitors my Brother in law and his wife, I introduced then to you you staid oh hey Bob I used to date you when we were about sixteen, his wife's face was a picture, you went on to say that you would babysit and he would come along with you,all totally innocent you said, getting up from my bedside, with his wife scowling at you you walked off laughing your head off!!! That was you Carol so funny yet so brave, always worrying about me! And Amylou! RIP my lovely brave friend I know your we're scared but you never said, love to John at this very sad time xxxxxxx ... View more

Well had app with onc on Tuesday he was not a bit helpful I told him about the pain that I am in and that my GP had prescribed gaberpentin and he just said well let your GP monitor it, also I had pain in my breast on my cancer side I told him that I was having my first mammo on the Thursday and was worried about it, he just said yes they will take care of that for you!! I just cried when I came out of his office, my BC nurse was very supportive and said to change onc, so still thinking about it, this nerve pain is really bad and that same day I was admitted to hospital for two days as i was unable to pee, they said that it might be be the nerve pain causing it as I only had a slight infection not enough to cause the mayhem that it did, why don't they take us seriously when we say we are in pain. When I had my mammagram the radioligist was so nice and said by breast was very hot to touch and looking a little swollen she was so careful not to hurt me, and put a report with my mammo so it will be flagged and looked at in more detail, so just have to wait a few weeks for results, at least some of my team are on the same page thank god. ... View more

Done! And I shared on FB noticed my good friends have also signed x ... View more

Its ok I found the link to sign duh!!! Ok done and posted on FB x ... View more

Lemon grove where do I sign I only see the part that says to share but not to sign, is this the same as an E partition? . ... View more

I am so glad this has been posted I thought I was going mad, I have been complaining about pain in my muscles/ joints at the last three appointments with my onc, the first time she told me to take evening primrose!! I wanted to scream and couldn't get it through to her how painful my joints felt, after she took no notice the second time I rang my BCN and she said stop taking the Letrozole right away but keep on the herceptin and see how I go, well it got worse, then I realised that it wasnt joint or muscular but nerve pain, as it moved around sometimes it would effect my feet, knees and hips and later on in the day my shoulders arms or wrists would hurt, I would have to go to bewouldn't was to uncomfortable to sit in a chair, but being in bed did not ease it and it was to painfull to even turn over, on my next vist I saw a different registrar and he said to take co codomol it was over the counter strength!!! Irangate my GP who new what it was right away and she put me on Gabapentin 100mg one at night for a week and increase to one in the morning and at night, it's not been a dramatic change but at least I can dress myself now and aundone hobble to much when walking, but the night time is still as bad my hands swell and the pain in my knuckles and wrist,elbows is excruciating Ican't even pull the duvet up the bed to cover my shoulders. I did have a bad time on tax and had bad pain so much so I was admitted to hospital kept me in for 4 days I was on morphine and it. Still took 3 days to get the pain under control, just find it hard to believe that at the hospital they make me feel that I am the only one and they seemed surprised at my discomfort but yet do nothing, what can I now!!! I am 55 but feel liKev 85. At my next herceptin treatment I will see the doc again to diisucss what my treatment plan will be if it is the herceptin that's making it worse I don't know what to do. ... View more