Breast Cancer Now Forum

I havent really got anymore help to offer. I am a 42DD. I had to abandon the size 13 prothesis in the heat. It weigh 2.9 lbs on my scales!!! I have an appointment with BCN to see if I can get a lighter one which I had before and was very happy with. Also Nicola Jane have bras in this size. It seems very difficult to get bras much in cup sizes over A/B. ... View more

I am on Arimidex - 4th year - and had trigger finger about 2 years ago. It was painful and in the thumb. Went to GP who recommended steroid injections which I did not fancy and felt it was a side effect of Arimidex. Thankfully it corrected itself shortly after that and no more trigger finger since. Just terribly painful feet and walk like a 90 year old lady but am 60 on Saturday. Did not think back in 2008 that I would still be here. ... View more

I too have been dx with an underactive thyroid since finishing treatment. I had rads to my neck as well as the chest area and underarm. Research on the internet confirmed that rads to the neck can destroy part of the thyroid. This was also confirmed by my GP. I did not really have any symptoms although my hair was slow to come to back after chemo. Still not right and that is over 3 years since finishing taxotere. Have put on a stone in a year which I cannot shift. ... View more

Hi It most definitely does work especially when in conjunction with bandaging. As my arm had risen to 69% in volume I was fortunate to receive approval for a course of treatment from my health authority. During the past three weeks I have received daily bandaging and MLD and the reduction has been magic. Now there is little difference between each arm. I was very very lucky not to have had cellulitis given the severity of my arm which had become fibrotic ie the tissues had hardened. Without expert help lymphoedema worsens and is unfortunately a chronic condition which needs very careful management. I will of course have to wear a sleeve but now intend to have MLD regularly in order hopefully to keep it better controlled. When I was first dx with bc I was unfortunate to see someone with extremely severe lymphoedema. Not a pretty sight. You may think I am alarmist. But lymphoedema is a serious condition and often treated frivolously by the NHS who have little help for it other than the supply of sleeves which are off the shelf and do not fit the individual. I am always happy to give help to others. ... View more

Not sure if this has already been mentioned but may I suggest that anyone with lymphoedema joins the Lymphodema support network. If you contact me I can give you the contact details. As well as all the really useful up to date leaflets you will receive regular newsletters, an excellent DVD demonstrating exercises and SLD together with soft balls which can be used to exercise the hand. All of us with this side effect of our treatment should support this worthwhile organisation. I was dx with lymphoedema in Dec 08 before my rads. Incidentally under no circumstances should any massage be undertaken until treatment is over. This is because there is a risk that massage can spread any cancer cells to the rest of the body. Sadly my lymphoedema has got worse considerably worse since Dec 08 mainly due to not wearing sleeve, being overweight and patchy support. I am now undergoing a month of bandaging and MLD. Please feel free to contact me for any info or advice. Starfish ... View more

Hi I have had lymphodema since Dec 08 and do a lot of knitting. Havent really noticed that it makes things worse. If anything I think it helps. Cross stitch is even better for anyone who would like to try that. The slow stitching motion seems particularly beneficial. ... View more

Hi I do not often post but just wanted to say i was dx Feb 08 with lobular and had mastectomy and still here today and feeling well. ... View more

I havent got any helpful tips I can add I am afraid. I was dx with lymphoedema over three years ago towards the end of taxotere but before I started the rads. My arm has got bigger in the meantime. Could have been because I did not wear sleeve. I too have been told to wear a separate glove and sleeve and that I can only remove the glove briefly to wash hands after using toilet. I asked how can I eat an apple for instance wearing a glove. I was told eat it with the opposite hand! They are just so unhygienic. The other day I visited a friend in hospital. How was I supposed to use the hand gel wearing a glove? I wore a gauntlet but was told I must absolutely not fold back the glove bit. It is very depressing and does not seem to get any better to come to terms with. I find people also ask why my arm is swollen which doesnt help. I have been seeing a lymph nurse every week nearly since January with no improvement. Last week my arm was put in a sort of airbed type sleeve which was plugged in and inflated and deflated for 15 minutes. The arm came down half an inch but quickly went up again. And I became light headed. It seems they do not really know what to do for the best. Although everyone is agreed that losing weight could have a dramatic effect. ... View more

Hi - I too have been told being overweight makes lymphoedema worse and harder to control. I am currently 4 and half stone overweight. Seeing new nhs ld nurse who says mld only has a temporary effect and has put me in a made to measure thicker sleeve and glove. She says the arm will do down dramatically if I can lose the weight. But says some of the weight is caused by the amount of fluid in my arm. ... View more

i am two years post taxotere and my nails are still bad. i had strong nails before but now they are always splitting and breaking. i have always used sally hansen cuticle oil and hard as nails from the start. i tried having tips put on and that made things worse. I got an infection under one of the nails and the salon did not want to know. The tips could not be removed apparently. Bc treatments are terrible and the effects seem to be ongoing for years. It has taken well over two years for my hair to start recovering as well. ... View more

The effects of radiotherapy are ongoing. Even after they have finished and everything looks normal on the outside there is scarring inside the body. I was told the effects can last one to two years afterwards. Indeed as someone who had a mastectomy I still nearly two years later get a stabbing pain on the site if I reach or move awkwardly. For that reason it is also very important to keep doing the lymphoedema exercises for several years afterwards and ideally forever regardless of whether you have lymphoedema or not as the arm can tighten up because of the effects of radiotherapy and the operation. Hope this helps. ... View more

I have had lymphoedema in my right arm for nearly two years. I also wear a larger size to accommodate the arm. Coats are a problem in the winter to accommodate the arm and thicker clothing worn in the winter. Capes and waterfall cardigans I find are good. Also anything made from a jersey material which will stretch. Bras are very difficult for those of us who are larger than average. I have recently started wearing the Amoena Contact prothesis - a stick on one. I find this absolutely brilliant and cannot recommend it enough. Particularly if you have lymphoedema. I wear a Contact Light which is I think 30% lighter. With this prothesis I am able to wear ordinary bras as long as they are higher and hardly know I am wearing it. Tunic tops with baggy sleeves, blouses with butterfly sleeves etc are also good. ... View more

Many thanks for all this information. I will get back to my GP! I finished Herceptin in Oct last year. In March I think it was this year my GP said I was borderline underactive thyroid. He said we will have to keep an eye on this whatever that meant. I did not know it was a blood test every two months. So thanks for the advice. I am 58 and do have a strong family history of thyroid problems so cannot say it was the chemo etc that may have caused it. ... View more

I also had lobular cancer and read the recent article. i do feel that such articles are scare mongering. I only and have only ever drunk an average of 2 glasses a week if that in all my life. I am now 55. So where does that leave me. Scared. Every week there is is some article or other on cancer saying this that or the other causes it. I feel there are so many variables. We are all individuals who eat and drink differently. Cancer behaves differently in each of us. Yes, it is good they are researching and by the way for those who are lobular check out the Cancer Research site where there is an ongoing trial called "The Glacier" trial which is being undertaken at various hospitals around the country and looking for more volunteers. Following the recent article I intend to avoid alcohol altogether now. If I am still here in 10 years time I will let you know if it is has worked. I always check out the Cancer Research site when such articles are published and often get a more informed view. ... View more

As someone whose arm has got larger despite doing everything to avoid it in the first place I too love knitting. Maybe it did contribute to it getting larger. who knows. But i certainly found it very therapeutic when I was having all the treatment and from that point of view it helped to keep me sane. Since finishing treatment I have joined a craft group and we meet one afternoon a week. Since then I have tried things other than knitting. I do cross stitch and also crochet. Both of these I find very good for the lymphoedema. After a session of each my hand (which is hardly swollen in the first place) becomes flatter. I have recently purchased a book from amazon entitled "Living Well with Lymphoedema". I find this a mine of information. More than I have ever been given by any BCN or specialist. In particular there are some very in depth exercises which are having a very marked effect on my lymphoedema. Whilst doing the exercises I can actually feel the lymph flowing in my hand, arm and across my back. Deep breathing is also of great benefit at periodic intervals throughout the day. I guess this is why yoga is recommended. Aqua arobics is also strongly recommended. If anyone is interested please IM me and I will give details. As to creams I could not get on with E45. I found it too thick and not easily absorbed. I now use Johnsons 24 hour cream which seems ok. ... View more

Hello Lynn I hope by now you have been to your GP for antibiotics. I also had folliculitis. Which is what it very much sounds like. I had the same symptoms. It was whilst I was on FEC and came on soon after I lost my hair. I have never heard that it is a side effect of Herceptin and certainly not one I suffered whilst on Herceptin. I had it when I was on FEC but it cleared up when I started taxotere - although of course I got a different lot of side effects on that! Whilst antibiotics will clear it I found I had to be very careful after each dose of FEC. I found a diluted solution of tea tree to be very very effective. I wiped this over my head for about a week after FEC and this seemed to stop another outbreak. As you are finding and I did too it is extremely painful. I you find this advice of benefit and it clears up soon. ... View more

Interesting. I definitely agree that there is not enough done for those 30% of us with lymphoedema. My impression is that the bcns are poorly trained to deal with it and just give out general advice on how to avoid it - all of which I did incidentally after the op but to no avail - indeed my experience is that the advice is abysmal. If you research on the internet you will find loads more advice particularly an American site which I will pm to you. There they seem to be much more proactive particularly about giving sufferers MLD. Again no NHS nurses are trained to give this and it is not available on the NHS. My impression is also that my left good arm came down after I finished the Herceptin. Not surprising it suffered when you think about the quantity of infusions we had. I did have to have a PICC line near the end and that involved lots of probing about in the arm. It is largely my choice to wait. Theres is no way I fancy bandaging in the summer what with the heat and not wanting to cover up. I was told there was no urgency but no help given in the meantime. I was told I needed a made to measure sleeve. Again my arm measurements do not match those in all the appropriate places of the standard sleeves. But these are routinely dished out by the NHS as to get a made to measure is more expensive. Part of the advice in the book is to regularly measure your own arm at all the strategic points ie the hand, wrist, elbow and upper arm. They suggest once a week. That way you can monitor what you doing and if it is making your arm worse. I feel this has got to be good rather than every six months. A lot can happen in that time. Again when I was first dx I was definitely discouraged by nurse from measuring. Incidentally these measurements are the ones on which they decide what size sleeve to order for you. The way I see it a lot of it is down to the patient. Once you are onto the bandaging, MLD etc you have to pay for that yourself anyway it seems. I fear with all the cuts things can only get worse for sufferers as it is condition that needs regular management. I have also bought a very good book on Amazon with loads more advice in than is ever given by NHS nurses. I will email details. ... View more