had my 8th herceptin yesterday and told onc about my swollen achy fingers on my operated side. he has refered me to the breast care nurse as he suspects it could be lymphodema. i feel really fed up now, keep crying over the last few days, onc says my hormones are all over the place as had a period about 10 days ago 1st one for about 7 months and have been taking tamoxifen for about 3 months. it just seems such a long haul, some ladies come into the hospital have their 6 or 8 sessions of chemo and finish and i will still be going every 3 weeks for my herceptin.the breast care nurse called me today and said that she would refer me to see a lymphodema nurse who is based at our local hospice, that upset me at the thought of going to the hospice!. i dont know whats the matter with me, 2 weeks ago i felt really positive and happy as have a great prognosis and now i feel really low. sorry to moan ladies xx
Hi Sarah,
your not moaning. i know how you feel about the worry of lymphodema and with no dis-respect i too would be upset it i had to go to a local hospice to see the nurse. BC is frightening enough. I was looking at my arm and thought god forbid if i have lympodema looking at a swollen arm is always going to be a constant reminder that i had BC. Others have said as time goes by the thoughts will be less and less about BC but this lympodema will be a constant reminder so how do the thoughts become less and less.
Fortunately i don’t have to have herceptin just tamaxifen, however what you need to keep in your mind is that they are giving you this because it gives you a better prognosis. Think of all those ladies who could have benefited from herceptin but were never given it. From what i understand herceptin isn’t as bad as chemo. I’m due to finish chemo end of august and then rads and even now i’m thinking at the moment i’m in a safety net - what happens when they say off you go ?
we all have low days and worry and get upset over stupid things but that doesn’t mean your being silly your just human and after what been through i’m sure we are more than allowed. If you want to cry, cry and get it all out.
take care
Sukes
HI Sarah
Its ok to have a good old moan every now and then.I am constantly looking for swelling in my arm,its a scary feeling,I keep thinking maybe it will change when I go back to work and have another focus.I know what you mean about having to go for Herceptin.When I finished my chemo in March we where thrilled at not having to go to hospital every 3 weeks, I was expecting to be on some form of medication,thinking tablets, and was pleased to be told I would be having Herceptin, as I know some trusts don’t give it yet,then was told it would be IV for another year --aaggghhh- just when I thought it was the end of 3 weekly visits.Oh well had 4 now and settling into the routine.I too have a good prognosis,but sometimes on off days wait for the bubble to burst.As you say it could be your hormones playing up,I have not had a period for 9 months and as I am 46 my bcn says they may not return.
Keep your chin up and stay positive.
Mary
xx
Hi Sarah,
Don’t know about you, but the lymphoedema diagnosis seems to me to be almost worse than the cancer that indirectly caused it. I’m half-way through chemo - 3 Tax down & 3 Fec to go - & I’ve been worrying about the tightness in my armpit,upper arm, wrist, hand etc. but it’s been coming and going & my onc nurse told me it was just the result of the Tax. I saw my oncologist ‘doc’ today, however, and he quite matter-of-factly told me I have oedema & I have it for life; it may get worse with rads, it may get worse by itself, they don’t know anything much about it, and I am getting a referral to be measured for an elastic sleeve which I should wear for at least a few hours per day - for the rest of my life! To tell the truth, it has hit me harder than my original DX - it’s so bloody final & irreversible. While Finland - where I live - is first class in terms of cancer treatment, it was apparent to me today that the doc thought I was being a complete wimp being upset about his assuring me that I have lymphoedema - as though it were a merely cosmetic problem! It’s not. It’s very uncomfortable and limiting - and it only gets worse, never better.
As I said to the onc - if I could only have a list of preventive ‘things to do’ I’d do them all, but there isn’t any such thing. While I am grateful to this site for being such a source of information and support, I read their lympho advice a few weeks ago and laughed sourly about it - so typically obtuse and obfusticating:
“Try to use your arm normally. Gentle,
non-repetitive exercise, such as walking
or swimming, will keep your joints supple
and is important for lymph drainage. Your
breast care nurse should also be able to
give you some daily exercises.”
Secondly - who really trusts their breast care nurses to be cutting edge in terms of current cancer zeitgeist? Though I’ve been doing the prescribed exercises as prescribed. And firstly, how is it possible to describe either walking or swimming as gentle (yes), non-repetitive (???) exercise? Non-repetitive? Walking? Swimming? What sort of walking & swimming are we talking about here? OK, I’ve howled today to make up for months of finding everything mildly amusing & am not in an upbeat mood - but what is one to think about this kind of advice? How is walking or swimming non-repetitive? Is this merely an inappropriate typo? Or is this a newsflash from the Monty Python Ministry of Silly Walks?
Sorry Sarah - I went off the spool. I hope you just have fluid retention that will be shed after treatment. I hoped I did, too - until my doc’s casual diagnosis today. I’ve lost it somewhat.
Best, M-L
Emelle, Sarah, Mary
Hi! So sorry you are all now in on what has been called “breast cancer’s dirty little secret”. I think it get talks about far too glibly by those who do not have it. As you say, it’s a mere cosmetic problem to those who do not have it.
I’ve had lymphoedema treatment in a hospice before. I know that it put some lymphoedema patients off, but I didn’t find it a problem. I was treated just off the main entrance in a room just like a doctor’s surgery. It was cleaner and much less chaotic than an NHS hospital. And the car parking was free!
I agree with Emelle - it’s the irreversibility of lymphoedema that upsets its sufferers so much. Not to mention the way that health profssionals gloss over it as though it was of no significance. Surgery to correct it is currently only done in extreme circumstances and few drugs have much, if any, effect on it. So…there tends to be little interest in research as, frankly, there is not much glory or money to be made from it. It’s tragic that the quality of life of thousands of people depends on ego and profit, but that’s what makes the world go round.
It’s only four years since my second bc was diagnosed but a lot of things to have changed regarding post-op. Are people now being told that the exercises they do will help to prevent lymphoedema? I did the exercises, but only in the expectation that they would help to return mobility in the affected arm. Lymphoedema is another cruel lottery, as far as i’m concerned. It is known that certain things can trigger it or make it worse; radiotherapy, flying, heat.injections/ IV/taking BP in the affected arm, but everyone reacts differently. I personally think that something that would really reduce the incidence of lymphoedema would be to issue every BC patient with a compression sleeve to wear prophylactically whilst carrying out the sort of activities likely to set it off, eg, ironing, hoovering, working at a PC. (I believe this is the way things are going in the States). Compression sleeves are relatively cheap - I’m sure they can still be bought off -the-peg for about £25 and you can bet your boots the NHS gets a discount for buying in bulk.
To end on a positive note: There IS more research being done into lymphoedema. Scientists are, very slowly, moving closer to devising drug therapies that may work. Hyperbaric Oxygen Therapy (breathing oxygen at high pressure) has been trialled by Cancer Reasearch UK as a treatment (not a cure). Low Level Laser Therapy (I’ve had this myself) has been used in Australia for over 20 years to treat (again, not cure) lymphoedema with good results. There are surgeons in Europe who are making advances in lymph node transplants to help lymphoedema sufferers.
Emelle, as regards exercise. The advice is vague, isn’t it? Every lymphoedema arm seems to have its own little quirks, I imagine. I think however that there is universal agreement that swimming is really, really good for lymphoedema. It’s the combination of cooling, compression and exercise that is so beneficial, apparently. I was advised to limit it to about 20 mins a session to start with and avoid butterfly strokes (as if!). If anything you do makes your arm ache unduly, you should stop. They often advise elevating the arn as well, but that’s not practical in the middle of Tesco’s. A physio suggest to me that an aching arm can be given some temporary relief just by putting your hand in your pocket - ie, by taking away some of the weight of your arm. I have to say I haven’t bothered with lymphoedema ‘exercises’ for years (I’ve lymphoedema since 1996) I think they are are aimed at people who would otherwise be immobile and I’m active and have full mobility in my arms. I do self-massage, which I think helps a bit, shoulder rolling and a deep breathing Pilates evercise which has been shown to move lymph fluid from the limbs to the trunk. I swim as much as possible. I’ve also bought a hand-held low level laser to treat myself.
Gotta go, girls
Thinking of you
S
Dear Bahons
Thanks for this mail - it’s a real comfort and a practical help. I’m going to see if this bloated body can be squeezed into one of my pre-BC swimming costumes and then hit the local pool. I have to do a bit of research to discover the quietest time of day - in order to frighten the smallest number of innocent people. But, oh dear, I do so hate public swimming pools - especially in Finland where it is obligatory to shower naked in large open shower areas before getting into the pool. Very hygienic and all that, and it was OK when I was ten years younger and ten kilos lighter - but now?
For England and the arm!
M-L xxx
hi everyone
I’m so glad I have found this thread! I’m currently having TAC chemo regime and last week had the 2nd of 6. I’ve noticed that my arm swells and my arm aches dreadfully around each treatment.I am 13 weeks post op (mascectomy,axilla clearance and reconstruction) I have to confess I probably try to to do too much too soon but am now slowing down a little which helps. I agree with everything that has been said,I think it is underestimated.A sleeve would be a good idea and cheap too. I have found that warmth helps too. I am so sick of taking medication I now try to grade the discomfort,may sound silly but it helps me.
I have had 3 ops in 3 months( as above,repair on above and portocath fitted) and the chemo and all I want now is to have a hot bath. I haven’t been able to because of the wounds.Now I can think about it,my arm can probably not cope with the heat-grrrrr! Yes it is a constant reminder!!!
for the arm ! ditto! Jennie x
Hi Sarah and All
I have just been to my local hospice this morning to see the lymphoedema nurse and i too was quite nervous going as i remember my dad being in one 10 yrs ago, but i was pleasantly surprised and wasn’t what i expected, after loads of questions, height and weight taken and both arms measured, i was given a very stylish (NOT!!) compression sleeve to wear every day, although i know its not as serious as bc it is something that is going to affect everyday life and is a constant and visuable reminder of what we are going through, also like you, after 3xfec, 3xtax and 25 rads ive just had my 9th herceptin plus going in hospital to have a new lump removed on friday, seems like its never ending doesn’t it. IT FEEL GOOD TO HAVE A MOAN SOMETIMES and this site is the best place to do it ive found…
Good Luck and lots of Love… MIZZY XXXXXX
Hi All
Glad your visit to the hospice wasn’t too bad, Mizzy and that you found the practical advice helpful, Emelle. I know just what you mean about showering naked in public - had to do that in Iceland a few years ago - recon scars, hysterectomy scars, wobbly bits, droopy bits, etc,etc all on full display. It was suggested to me by a lymphoedema nurse that I might like to swim with my compression sleeves on, but I told her I felt self conscious enough about the lymphoedema without drawing attention to it further!!! No doubt swimming with compression garments on is even more beneficial, but there’s a limit to making a public spectacle of oneself, in my view.
Bye for now
S