I am about to start rads on 5/1/09. My onc said I will need it to chest wall and armpit. I have had 4 FEC/4TAX, on Herceptin & Arimidex. But have just developed mild? lymphoedema 4 weeks after finished chemo. I am tempted to say I will not have rads to armpit as all lymph nodes were removed found in 6 although onc has recently said cancer cells were found outside lymph node(s)? and they cannot be sure if any havent broken away. Before I knew about lymphodema he gave me option of whether to have rads to armpit as it increased chances of lymphodema by 3 to 5%. Well I’ve developed it anyway and feel having rads will just make it worse. What do others think? Would they risk lymphodema forever and all that that implies for a risk despite all the other treatment I have had and am having. Coupled with a 10% chance of developing it in other breast anyway as I had lobular. Desperately needing advice. I feel disfigured enough without hair, eyebrows, no boob let alone having a fat arm forever & restricted lifestyle/movement.
Just bumping this up…
Lymphoedema can be caused by cancer cells spreading and cutting off the lymph channels so I think there would be increased chances of lymphoedema if the cancer recurs. So I’d probably go ahead with it as an insurance policy in your circumstances, but maybe not as we are all different and it’s very difficult to second guess
Mole
Hi,
it is going to be a very personal decision. When I am asked to make a decision about Bc, I always take the option that makes a recurrence less likely. So in your case I would definitely have the rads as they are actually better at killing local cancer cells in the breast than chemotherapy is. I have not got lymphodema so I am probably not the best judge of it. I am currently having rads and so far under a minute of rays that you cannot even feel is not feeling as big a deal as chemo or surgery. I could change my mind about that further down the track of course, who knows. If it came down to being here with a fat arm or chancing secondary cancer with a thin one and then still having to have rads possibly, I would have it now. The thing we don’t know is whether you would even get it back. Myself, I shut the door, lock it and double bolt it just in case. Hope this helps rather than hinders and big hugs for you with this difficult decision. I am sure other posters will be here soon to balance my view.
Lily x
Hi,
I would say have it but that is only my personal opinion.
I had stage 3, grade 3 tumour (later put to stage 4) - chemo first for 5 mths, then surgery where I had a mx and full anc clearance plus some of the upper muscle tissue towards the collar bone. They found cancer in 12/22 lymph nodes and also in some of the extra tissue he’d removed. The scar was 9 inches long from my breastbone to right under my left arm. Following surgery I got a really stiff shoulder and was sent for physio in preparation for rads. Had the rads but have developed slight lymphoedema about 2 months later. To drain my neck area, chest wall and under arm area I had kinesio taping which works brilliantly for me - started it in May and am still having it now. Yes there are extra things associated with the lymphoedema and I can fully share your last sentence - absolutely summed me up - but I would rather have that than the cancer comes back and me regret not having the rads.
If it’s any consolation, my chemo finished last Dec, by Feb my hair was starting to come back and now I have all my eyebrows, lashes plus legs etc and my hair is even more curly & thicker than before and if it was straight would be 5 inches long ! Granted I still have the fat arm but that goes with the rest of my body as I’ve put on 2 and a half stone with first tamoxifen & then arimidex. Can’t do anything about the one boob but the prosthesis is fine and I may well ask for the other boob to be removed if they’ll do it.
Good luck whatever you decide.
Liz
Hi Starfish
I have lobular cancer and my lymphoedema developed a couple of months after my radiotherapy. Even if you hadn’t developed lymphoedema now you would still have had a lifetime risk and I think the stats read 1 in 4 women go onto develop it. Once you have lymphoedema it cant be cured but it can be managed especially if seen to quickly. If it were me I would want to know I had thrown everything at the cancer, lymphoedema is a pain but it doesn’t kill you, Sorry if thats blunt. I may not be the right person to reply to this thread as I have mets so I may look at it differently. I hate having lymphoedema, but eventually you learn to live with it and I get out of doing alot of the housework!!!
Sorry have to go son wants laptop, urgently apparently! I hope this helps but i’m sure others will be on, try posting on lymphoedema thread.
Take care
Lynne x
If you’ve already developed lymphoedema, perhaps it won’t make any difference. I had similar cancer as you, 6/14 nodes positive with extranodal extension and lymphovascular invasion so there was a good chance the cancer had spread. I think I was told that the radiotherapy decreased the chance of regional recurrance by about a third which is very significant. I hate having lymphoedema but even if i’d known I was going to develop it only a month after finishing treatment, I would still have had rads.
Hi Starfish
What a difficult decision. I have lymphoedema in both arms from bc and for me it’s the absolute pits (Sporty sin-worshipper - or used to be!). The worst arm is on the side that was irradiated.
Rads increases the risk of developing lymphoedema. (I’m not sure tho’ about the effect when you already have it. Does anyone else know?) The figures I have been given are that the risk increases, on average, six-fold, that is from, say about 6% to approximately 36%. There are, of course other factors to take into account such as age (the older you are the more likely you are to get it), weight (the more overweight you are, the more strain on the lymphatics) and diabetes, which also play a part. I’m not surprised that the figures you have been quoted are lower than this - the peak time for developing lymphoedema, is, I believe about three and a half year’s after treatment, so short term follow-up statistics can be misleading.
What to advise? Well, as I’ve said, I had rads and I’ve also had a local recurrence where I was irradiated. In my gloomier moments, I sometimes feel as tho’ I’ve exchanged (temporarily, naturally, as we’re all going to go sometime) a death sentence for a life sentence. I’ve had lymphoedema for 11 years in total, including four years in both arms. It wouldn’t be so bad if support and treatment were readily available, but a lot of the time they aren’t - you find yourself at the bottom of the food chain with this one, often fighting to access the cash-strapped and far from state-of-the-art NHS lymphoedema clinics. Keeping my lymphoedema under control has personally cost me a lot of money over the years as I’ve been forced to use private treatment.
Having had my customary moan, I suppose, however, that you have to take all the chances you are offered when it comes to treating bc and that would include the radiotherapy. I don’t envy you - it is your dominant arm that is affected? I think I would still opt for the rads, but with a heavy heart.
(By the way, I agree with you about the disfigurement. There’s no recon, PS or prosthesis on offer for a fat arm, which is far more difficult to hide/camouflage than a mastectomy. There are some pioneering surgeons in France and Germany who are carrying out lymph node transplants on lymphoedema patients, but there are not many of them and this type of operation is still very much in its infancy).
Good luck with your decision, Starfish.
X
S
Hi Bahon
Sounds like you are reluctantly very knowledgeable about lymphodema. I do not feel given my dx that I have much option but to have rads. Rads do seem to increase your chances significantly even more so than chemo I believe. The physio I visited yesterday does not know why I have developed it except to say my name was in the hat. Makes it sound like the sorting hat in Harry Potter for anyone who has read the books. She said you can do all the right things and still get it. I have to say in this area physio seems quick. And I have another appointment next week to teach me the SLD routine. No specific exercises were given to me but I have printed some off from the internet. Does any of this reduce the swelling? She couldnt promise anything either way. I have the very fashionable arm and hand glove together with just a hand glove. How do others find these? Do you use them? Do they make a difference? I cannot put it on on my own. My husband with great difficulty has to do it for me.
Having said this I did meet a lady of 77 today who had it and seemed to cope very well and was quite phylosophical about it. And I felt rather humbled at 56 for finding it all so difficult to get to grips with. I felt very down yesterday at the thought of this life long chronic condition that apparently can come and go.
I have since taking off the offending coat last week found that the swelling in my hand has gone down and also my arm by about an inch. Since swelling in arm I also have developed a pain running up my arm from elbow to armpit. Physio said it was nothing to do with lymphodema and offered no ideas as to what it could be. Has anyone got this and is it related to lymphodema. Although physio didnt think coat had caused it and I had had it for a while although she wasnt sure how long. It does seem to be only in the last few days that I have felt it. driving being more of a strain and never had a problem before.
Maybe they will work on lymphodema more as more people are getting and surviving bc.
Kelley
Thank you for your comments which are very helpful. Your having a similar dx to mine. Can I ask how long ago you were dx and are you fit and well. I need some stories of hope with a dx like mine as most people I hear or meet seem to have little or no node involvement. The only reason I have taken all the treatment offered like all of us is the hope of more quality years to come. But with a cost of course for some of us with ongoing lymphodema.
Best wishes to you all
Starfish x
Hi Starfish,
I was diagnosed over 3 1/2 years ago and finished treatment in September 3 years ago. I developed lymphoedema at the end of October. My first symptom was pain in my arm, then I noticed the swelling. I was told the pain was caused by the pressure in my arm of the lymph finding new routes. It did subside over about a month. I was given bad advice by my Surgeon and eventually asked my GP for a referral to a lymphoedema clined and I wan’t seen for nearly 8 weeks.
Despite my fears, I’ve been quite fit and healthy with no sign of it coming back. I think in our situation, it’s best to accept any treatment that’s offered to us. In a way this is easier than for people with a better prognosis when the treatment doesn’t offer that much of a difference. I don’t dwell on it as much as I use to and just feel lucky that I’ve seen one of my daughters marry and I am about to see the birth of my first grandchild - both things that I thought I would be unlikely to see nearly 4 years ago. I find I am far more positive these days; things certainly improve the further you are from treatment.
Hope all goes well. Presumably your lymphoedema is mild and your getting early treatment, so hopefully it may not get any worse.
Good luck
Kelley
Hi all
Starfish, ‘reluctantly very knowledgeable’ is about right, I suppose. I wish I’d never heard of this totally pants condition! You sound as tho’ you have fallen on your feet and have a really good physio helping you, which is an excellent start.
Have you got a Medi sleeve and glove? They seem to be standard issue and not very popular (They must give the NHS either a huge discount or very favourable credit terms, I reckon). If it doesn’t suit (irritates the skin, rolls down, makes you fingers swell more) you may need to get back to the clinic and get a different make, which can be obtained on the NHS as well.
I can get my sleeves on myself - but I’ve had years of practice! I wear mine most of the day (my hands don’t seem to swell, so I don’t have gloves) - I’ll go without for special occasions! A well fitting sleeve will maintain any improvement achieved by other means (massage, compression bandaging), but won’t make much of a difference, if any, on its own. I have, however, bought my own coloured (black, white) ones which are lighter, more comfortable (especially in summer) and give me more options, wardrobe wise.
Yes, lymphoedema is a real Cinderella condition - altho’ there does seem to be more research on it now. As the number of long term survivors mounts, so does the count of lymphoedema sufferers.
I try to keep my own in everyone’s faces - mention it at every appt, whether it’s relevant or not! Etc, etc.
All the best, everyone
X
S
Kelley
Oh you have made me feel so much better. Just returned from radio planning at hospital where spent nearly all morning. Very very good onc who also is involved in radio planning very committed. He has confirmed that rads to armpit could make lymphodema worse. But I do not feel I have much choice. Like you say if you have a bad dx you have to take everything. I further discovered that of the two lumps i had one is hormone receptive the other isnt which I didnt know before. Onc was not sure if they had tested the other lump for HER2 status. All scares me further. I was originally told they were throwing everything at me because I am young ie 56 I now think its because I have everything!
Looking at my arm one of the radiologists said “oh thats not bad” your hand is ok. So I felt better at the moment. Whether it worsens remains to be seen. Maybe I am lucky? I spotted it early. Some people may not have noticed it. The arm definitely feels easier today. OH insisted on putting sleeve on me. Although I see from another post from Lynne that sleeves are a bit hit and miss. Mine seems way too tight and is very painful. And my fingers go blue.
Bahon
Yes I do have a sleeve. But at the moment it is impossible for me to get it on myself and very painful when OH does. From my comments above you can see my problems. I have another appt with physio next monday and will mention it to her. Does it have to be really tight if the sleeve itself doesnt reduce the swelling. My arm is definitely feeling a lot easier today. Although the physio didnt give me any specific exercises I am just doing the ones I was originally given when in hospital.
Thanks for all your support. It is really great as I am feeling so depressed what with one thing and another. Bc overall seems so much a lottery how soon it is caught etc etc.
Starfish - hi!
If your sleeve is making your fingers go blue, don’t wear it - there is something not right somewhere. It could be the wrong size, wrong compression, or have a faulty pressure gradient. It is not normal to have blue fingers - you need to get a properly fitting sleeve - get an appt asap - a badly fitting one will not do you any good and may make matters worse. It sounds as tho’ it is too tight - provided your arm isn’t badly swollen, I think you should be able to put it on yourself. If an off-the-shelf sleeve (of any brand - not just those grotty Medis) doesn’t work, they should get made-to-measure organised for you.
I don’t think other people notice swollen arms as much as we ourselves, do. (Sleeves, on the other hand, stick out a mile…)
Grrrr! Why do people who don’t have lymphoedema like to tell us our arms ‘aren’t that bad’. If you’ve got it, it’s bad! How insensitive. My surgeon gaily told me once that he had lots of other patients with much worse lymphoedema than mine. Oooh, that did make me feel good, to have my painful, swollen arm so cheerfully trivialised.
Hope your arm is soon feeling a lot better
X
S
Hi Starfish
I was told if hand /fingers went blue to not wear sleeve. My first sleeve did that and it was so tight I could hardly bend my arm to do exercises/massage. I telephoned lymphoedema nurse and was told not to wear it, but it took 8 weeks for next appointment and by then my arm had increased by 13%. I don’t think sleeve should be really tight but it should be comfortable. Whatever comfortable means!!!