Breast Cancer Now Forum

Hello Kary. You absolutely have my sympathies. I have always had large breasts -prior to surgery I wore a 32GG. Not sure whether this is the reason why my lymphoedema is in my breast rather than my arm. Nationally it is a bit of a post code lottery as to what lymphoedema clinics are available and how soon you get referred. I was lucky and my clinic has a nurse the specialises in breast MLD but many clinics just 'do' arms and legs and often that just means compression sleeves and the exercises you are told to do anyway. If you have breast lymphoedema MLD will really help as long as it is caught early enough so it is worth going to a private clinic if the NHS locally does not provide it. Also kinesio tape may help if you know how to apply it. Ask if that is available. You can buy it online once you know how to apply it. Unfortunately for me I am allergic to it -funny skin! Long term be very aware of the risk of cellulitis which can be very serious. You are very much more likely to get this if you have lymphoedema. Make sure you keep the skin clean and moisturise. If you feel unwell, have redness, heat and tenderness make sure you see a doctor. I have had lymphoedema since surgery in June 2015 and have had cellulitis twice. The first time I ended up in hospital on intravenous antibiotics so it can be really nasty.   Wishing you well. While it will probably not go completely you can do things to improve it.   Love Amero xxx ... View more

Hello Kary. You absolutely have my sympathies. I have always had large breasts -prior to surgery I wore a 32GG. Not sure whether this is the reason why my lymphoedema is in my breast rather than my arm. Nationally it is a bit of a post code lottery as to what lymphoedema clinics are available and how soon you get referred. I was lucky and my clinic has a nurse the specialises in breast MLD but many clinics just 'do' arms and legs and often that just means compression sleeves and the exercises you are told to do anyway. If you have breast lymphoedema MLD will really help as long as it is caught early enough so it is worth going to a private clinic if the NHS locally does not provide it. Also kinesio tape may help if you know how to apply it. Ask if that is available. You can buy it online once you know how to apply it. Unfortunately for me I am allergic to it -funny skin! Long term be very aware of the risk of cellulitis which can be very serious. You are very much more likely to get this if you have lymphoedema. Make sure you keep the skin clean and moisturise. If you feel unwell, have redness, heat and tenderness make sure you see a doctor. I have had lymphoedema since surgery in June 2015 and have had cellulitis twice. The first time I ended up in hospital on intravenous antibiotics so it can be really nasty.   Wishing you well. While it will probably not go completely you can do things to improve it.   Love Amero xxx ... View more

Hello On a diversion. Please don't be too anxious about the chemo and the herceptin. The vast majority of people will not have the pain and joint problems I have had. While peripheral neuropathy is a known side effect for taxane chemotherapy usually this is no more than some numbness in hands or feet, but most do not even get that or if they do it wears of in time. I still hope to get off my crutches, but even if I don't the treatment is worth it. The chemo shrank my tumour from the size of a tennis ball to the size of a marble -so it may have been bad forme, but that means it was bad for my tumour too! I was given the option of not continuing my treatment due to the side effects, but I chose to continue because knowing this was the best way to stay cancer free was more important to me than my mobility. I am just so thankful that I can look forward to seeing my little boy grow up.   Love Amero xxx ... View more

Hello Tracey,   I am wondering whether you also had chemo as part of your treatment. Like you I had herceptin (just had my last dose!) but also had docetaxel as part of my chemotherapy treatment. I started with pain and weakness in my legs when I was having chemotherapy (docetaxel) and herceptin at the same time. It continued to worsen after completing my chemo (June 2015). I am currently still on crutches but have seen some improvement in pain and weakness with exercise and strong pain killers. I am 43 (diagnosed when I was 41) and I feel pretty ancient. After lots of xrays and scans I recently saw a neurologist who has diagnosed me with motor neuropathy which he believes is due to the docetaxel rather than herceptin. Basically the treatment has damaged the nerves in my joints that control my muscles. But I do understand that docetaxel can also damage the muscles themselves and the joints as a whole. You are certainly not alone and since suffering myself I have met others similarly affected. Keep on pushing for help and diagnosis to improve and manage your pain. All the best.   Love Amero xxx ... View more

Hello All,   I had the same, but it was dark and quite noticeable. It even grew in weird places like under my eyes, all over my neck and the middle of my nose and forehead! Not a good look. I bought an epilator and removed the lot. It hasn't grown back. Unfortunately only half of one of my eyebrows came back and as I have thick dark brows this looks rather odd! I have to keep remembering to fill the other half in with makeup.   Love Amero x ... View more

Hi there,   I must admit I see to have been very lucky in the chemo hair lottery as my hair has grown back thick and black (my colour when I was a child) despite being fine, mousey brown and somewhat greying before it fell out. The only problem is it is incredibly dry and poor condition so I am rubbing lots of Argon oil into to it in the hope it might improve. Just hoping the grey doesn't come back at least for a while!   Amero xxx ... View more

Hello Em,   I agree with Vik. Speaking to someone might really help. I had counselling last year when my little boy was seriously ill and I had just been diagnosed. I became clinically depressed because I couldn't do anything about the situation with my son and while it didn't make the situation any better (nothing could) it helped me find ways to cope with what had happened to me and to my family. I hope you can get some assistance through Macmillan. I hope that life improves for both of you too.   Love and virtual hugs.   Amero xxx ... View more

Hello Jill. Thanks for the sympathy. I am feeling a bit better this morning, though my lymphoedema seems to have flared up in my breast, but it is too painful to massage yet. But it is not like it was when I had cellulitis so I am sure it will soon settle down. I ended up taking some morphine last night, which I have prescribed for my nerve pain in my legs, but don't usually use because it makes me nauseous. I had a tepid bath this morning and that helped. I think it would be a good idea for you to take some pain killers prior to mammogram. I don't know how bad your pain in your rib cage is normally, but I usually find anti inflammatories are most effective for that sort of pain. I take naproxen because I have pain all the time and it is longer lasting than ibuprofen. You have to be careful though about taking it with food. I also take omeprazole to protect my stomach as I take it all the time. I try to avoid taking tramadol too much as it can be addictive.I only take paracetamol with tramadol as it makes the tramadol more effective, but wouldn't take it on its own as it would be completely ineffective for the level and type of pain. I don't take codeine as it doesn't work for me -apparently some people don't have the gene to change it into morphine in the body and I must be one of those people and codeine is a nightmare for making you constipated. Funny to think that before I was diagnosed I didn't used to take any medication at all -now I think I must rattle! I shall definitely dose myself with tramadol before my echo on Monday -hoping I get the same radiographer as last time as she was really careful.    Hi Joby. I am glad to hear your mammogram went OK despite you lymphoedema. I think it probably depends on where you lymphoedema is as much as how careful the mammo lady is -I am sure that the lady who did mine could not have been any more careful -she was lovely. I think probably I had a problem as much because of rib problems as the lymphoedema. But it is very reassuring for other lymphoedema sufferers who might be reading this thread that yours wasn't too painful. I think I have just been unlucky.   Take care and best wishes,   Amero x ... View more

Unfortunately I had the most awful mammogram this morning. Wasn't expecting it so had only taken the naproxen I usually take for the lymphoedema, rather than the tramadol I usually take for my nerve damage in my legs. When the mammogram lady saw the extent of the lymphoedema she moved me to a different machine. She couldn't have been nicer and did it all manually. Fine on my non lymph side -wasn't even uncomfortable -a smear test is worse. I can understand why some women find this a breeze. But when she did my lymph side initially I felt like I was going to be sick and when she did it under my armpit I nearly fainted. She had to quickly get me off and lying down. She said I had gone as white as a sheet. I knew it was going to be painful but I didn't realise it was going to be that bad. She said it is because of where the lymphoedema is, but it didn't help that I have acute pain in my rib cage (radiotherapy damage) and the plate was jabbing into the area where it hurts the most. I am still in considerable pain now -it was agony driving home. I had to sit in the car for a bit to wait for when I felt safe to drive. My hands wouldn't stop shaking. I wish I had had someone with me. I have taken a couple of tramadol and I intend to have a lie down. Dreading my echocardiogram on Monday -I hope things have settled down a bit before then as the last one was very painful because of where they have to put the ultrasound thing. It would be so great if they could invent something to replace mammogram s because for ladies like me who have constant pain and inflammation in the breast and ribcage it is just unbearable. At least I have a whole 12 months for things to settle down now before the next one.    Amero x ... View more

Hello Nancy,   Have you got a John Lewis close by? If yes then you will find that they have a range of soft cup bras and mastectomy bras and their fitters are trained to fit them. I have also heard that Marks & Spencer's fitters are good if you don't have a John Lewis.    Best wishes,   Amero xxx ... View more

Hello Em,   You absolutely have my sympathy. Like you I have lymphoedema and some long lasting side effects from chemo ( nerve damage) but at least I don't have the agony of misdiagnosis and the potential what if scenario that you must keep going over in your mind. But where we both are is a new kind of normal -not the people we were before, but we need to find a way to go forward and make the most of the lives we have. Don't let this beat you -you do matter and you can find happiness even with the problems that you still have. Take small positive steps every day and be determined that things will improve in your life. You have been told that there is no way you can take the hospital's mistakes any further from a legal point of view so the only way you can deal with this without it eating you up is to try accept that there is no more you can do to right the wrong you have been done. It's not OK what has happened to you and is very unfair, but you need to find as a way to move forward and find ways to enjoy life again.  Wishing you happy and better times ahead.   Love Amero xxx ... View more

Hi Em,   I just wanted to let you know that I have had my bone scan results back and there is no sign of cancer. Looks like it is radiotherapy side effects. I am glad that I got it checked out though. I hope you get similar reassurance too.   Love Amero xxx ... View more

Hi Jill,   Just wanted to let you know and anyone else who has similar symptoms that I have had my bone scan results and there is no sign of cancer returning -I am so relieved! Looks like it is the side effects of radiotherapy.   Love Amero xxx ... View more