Didn't need this

Hi all

I’ve just had a heated face-to-face ‘discussion’ with oncologist about where to put a subcutaneous (not intravenous) injection to boost my red blood cell count.

He said all that stuff about it aggravating existing lymphoedema was a myth! I was speechless. I begged to differ (I’ve had lymphoedema - 11 years - for nearly as long as he’s been an oncologist and injecting lymphoedema arms has NEVER been suggested as a safe course of action by lymphoedema researchers, nurses and therapists - quite the contrary). He did also say that I could have the injection anywhere I liked if I wanted, so it didn’t quite degenerate into a full blown row…I got quite worked up - I wasn’t crying, but the chemo I’m currently having makes my eyes stream, so he thought I was in tears and apologised and said, did I want anti-depressants!!!

Grrrrrr"! No!!!I Just want to meet a doctor who knows something, anything, about lymphoedema!!! They cause it, why do they then wash their hands of it!!!

Sorry all, just had to have a rant.

X

S

Hi S

What a tough situation for you – it is so disheartening when our health carers know less than we do but don’t acknowledge this. You certainly shouldn’t have to remind anyone dealing with breast cancer about injections & lymphoedema, let alone argue with them about good practice. I don’t know how you feel about giving your oncology team or hospital some feedback about this episode, but it might be something for you to consider when you’re feeling a bit less furious.

And hope your red blood count is improving!

Marilyn x

Hi Marilyn - thanks for the support.

The whole episode really got me down yesterday. The doc in question isn’t an old fuddy duddy and seemed otherwise pretty clued up, so I had high hopes of him…

He said to me ‘there’s no cure, you know’ (for the lymphoedema). Yes, I’m all TOO aware of that (but continue to live in hope), but they seem to think that because it is isn’t life-threatening (unless complications set in), they can just ignore it. You wouldn’t force feed a diabetic a cream bun or put someone with asthma in a smoke filled room when you knew these actions could make their conditions worse, why can’t they accept the same is true for lymphoedema and injections?

They never treat lymphoedema themselves - they cause it, but they don’t treat it - as my former onc cheerfully said to me as she walked out the door ‘not my speciality, I’m afraid’. It’s left to others, if there are any, to pick up the pieces every time. In my opinions it should be treated just as seriously as every other side effect of cancer therapy. Radiotherapy departments happily throw aqueous cream at you by the bucketful; I was drowning in (unneeded) mouthwash when I was given FEC four years ago - but help for lymphoedema? ‘Try a couple of paracetamol and see if it goes down’!

Sorry! Ranting AGAIN.

Have a good weekend, all

X

S

Sorry to hear that you’re having lymphoedema problems. Just thought you mught like to hear my tale…

Several years after surgery I developed lymphoedema, and was fortunately referred on pretty quickly by my surgeon to the local clinic. After my gp had tried various water tablets, etc for several months! Anyhow, after a few years of wearing compression sleeves and gloves continuously, I now have the lymphoedema under control. Not cured by any means, but reduced to the extent that I can forego the compression bandaging most of the time. It’s really the only thing (that, and a dogged determination and commitment to wearing the bandages every waking hour), that will likely help the condition.Don’t know what you do to deal with the condition, but can highly recommend compression garments-if this hasn’t been offered you, then it would be well worth pursuing.

Hi Elaine

Thanks for teeling us about your experience - yet another person with a GP prescribing diuretics and probably doing more harm than good! - you poor thing. But I’m glad things have omproved a lot for you - that’s really good news.

Me…Well I’ve had compression bandaging in the past on right arm - it worked pretty well for me, so it wasn’t money down the drain (had to get it done privately).

Left arm came later and is worse (due to the radiotherapy, probably) - it’s never had any bandaging, as my lymphoedema clinic kept finding reasons to postpone/avoid it - and I’m not made of money.

Have recently moved to France. They don’t seem to go in for compression bandaging much, but they are enthusiastic about MLD, so I’ve been able to have plenty of that. They only seem to go in for made-to-measure sleeves and I’m now awaiting my first set since arriving here - we’ll see what they’re like! Also, they are keen on people taking standardised, refined, grape seed extract to help with the condition. It’s available from any chemist here and is very cheap.

I’ve been to Australia for Low Level Laser Therapy and specialised massage in the past and I’ve found this very helpful. Have now also bought a hand held laser for home use and this seems to be beneficial, too.

Currently having chemotherapy, which seems to be upsetting my arms, hopefully things will settle down when it’s finished.

I don’t know about you, but it’s the sheer tedium of this condition and the ignorance and contempt of it by the medical profession and the ensuing lack of support which makes it so hard to deal with. Sometimes I feel as tho’ I’m fighting the whole world… is it the same for you? Every day, same old, same old!

One day there will be a cure…

X

S

Hi S,
I thought I would share my experience with you today. I am just starting rads and had my lymphoedema awareness training.

As I have been already dx with it and have been chasing up my appointment at my local clinic without success,I asked if it was important to get things moving quickly to get it under control. I explained that I had been referred but havent heard anything. She said , no I wouldnt hear anything because the waiting lists are huge with virtually a handful of nurses scattered around an enormous area.

She said it was important to move quickly but their hands are tied!!

She has put me on her list in case she has a cancellation.

I am now beginning to understand your frustration… and hers, you could clearly see that she was stressed and probably doing three jobs at once!!

Am seeing my b c.nurse in the morning but can`t see what she will be able to do.

I have had such amaazing treatment so far with chemo, op and rads it is rteally sad that this area is so underfunded…
Take care,
Janx

HI everybody.

I have been reading almost every post on this site about lympho treatment. This is obviously one thing which is very diffrerent in the UK and in Norway. Moneywise, I mean.

I have to pay for all my compression garments. a RTW Jobst sleeve costs about £55, and i need to get 3 or 4 pr year.

But on the other hand, I have almost weekly MLDs with a physiotherapist. This treatment is absolutely free of charge as long as I get a doctor’s referral stating that I need it as a result of bc treatment…

I think it is sad that getting MLD in the UK appears to be difficult. On the other hand, it feels wrong to pay for these awful sleeves.

Well, nobody or nowhere is perfect, I suppose.

Love, cava

Incredibly I had to pay for my compression garments, in the UK…because I was treated privately for both the surgery and chemo. The lymphoedema clinic was based at the local hospice, ad they were mortified that they had to ask me to cover the cost of the garments. Had I been referred on through the NHS, they would have supplied them free of charge.

Hi all

Cava - it’s interesting to hear your experience of how lymphoedema is managed in Norway. Your sleeves sound very expensive for RTW (Ready To Wear?) - I think they could be about half that in the UK - but probably Elaine has more up-to-date info than me - I think Medi are the sleeve of choice for the NHS, tho’. You are lucky to get permanent weekly MLD - as far as I know continuous treatment like that is not available for lymphoedema in the UK from the NHS. You might get it for a few weeks, then be left to fend for yourself until it got really bad again - basically, it’s a reactive, rather than proactive stance.

Elaine - I think it’s truly wicked that you were asked to pay for the cost of your own sleeves. (What is NI for, for goodness sake?) If only the people running the NHS let their front-line staff get on with treating people instead of trying to make political points and impose ideologies on the rest of us, there would be a lot more of everything to go round.

Here in France, MLD for lymphoedema is free with a doctor’s prescription. My GP recently wrote me one for 20 sessions and I started off with two a week and am now down to one. I don’t think I can get it on a continuous basis here and most of the time I don’t think I need to. (At the moment the chemo I’m having is interacting with the lymphoedema, so I need help).

I picked up my first two French compression garments two days ago and I was charged 10.40 euros for them, so as is usual here, most of the cost is covered by the State plus private insurance, with a small contribution from the patient.

Toronto - don’t get too disheartened by what you are reading! But keep chasing your appointment, won’t you? The earlier you get help the better. Has your bcn advised you of any basic steps you can take at this stage to look after your arm and minimise the chances of worsening the lymphoedema? If you feel that you can’t wait and can afford a bit of private treatment, try the ‘Want more info’ thread on this lymphoedema board to find a qualified private therapist (which is where many of us have ended up, I think).

Underfunded service? You bet! Better cancer treatments mean more people either surviving cancer or having much better prognoses. This translates directly into more people suffering with lymphoedema, but this hasn’t resulted in any improvement in funding, awareness or much in the way of improved techniques for treating it. So, do fight your corner. The squeaky wheel gets the grease, as they say.

Hi S,
I had a home visit from my lovely bc nurse yesterday and told her of my concerns about my lymphoedema appointment. She took it all on board and low and behold I had a call from the lymphodema nurse who is coming to do a home visit tomorrow before I go to rads!!

I must say I take it all back, maybe the N.H.S. aren`t as bad as I thought! Long may it last!

Take care,
Jan x

Hi Jan - what fantastic service! That must be very reassuring for you.

All the best for your rads - keep us posted, won’t you?

X

S

(PS Don’t tell us where you live, as all us lymphoedema girls will be moving there! Ha-ha)