Hi
Reading the side effects of rads - just wondered if anyone on here suffered from the more serious ones i.e. seroma/lung damage/nerve damage in arm/etc?
Jo xx
I was told they are very rare now due to better planning using CT scans, and machines which can be targeted to only affect the bits that need radiotherapy
I got lymphoedema + nerve damage in arm
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Hi Mole + Bahons
Thanks for your prompt feedback. I too was told lower rates - but having read other sites nerve damage and lymphodema (like Bahons) seems to be fairly common.
I didn’t get a CT scan and was told that they weren’t just targeting my tumour - but the whole right side of my chest, including some of my lung ( few cms to take in chest wall) which seemed a little excessive for a grade two tumour?
Just thought I would like to sound out the actual people who have gone thru this - not just stats.
Thanks Jo xx
Hi Jo
Radiation is believed to increase the risk of lymphoedema (breast and trunk as well as arm) from (very roughly) about 5% after surgery to about (again, very roughly) 30%. Something they may well not mention.
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Thanks Bahons
Do you know if anything can help prevent it - like elevating the arm or the exercises etc. or is it just how the rads affect the internal stuff and can’t be undone?
Jo xx
Hi Jo
The exercises are supposed to help - as for elevating your arm - all well and good for a bit of short term relief but you can hardly spend your life walking around with your arm up in the air, can you?
I am no expert on radiotherapy, but I think the problem with rads might be that while neatly(ish) whipping out axillary lymph nodes generally doesn’t cause lymphoedema, irradiating a train of lymph nodes seems to often have a more devastating effect. Perhaps because of all the ancillary damage that radiotherapyy does to the surrounding tissue as well? I don’t know - just a guess - I’m sure others will have a better idea.
As far as I am aware, no-one really knows why some people are more susceptible to it than others. There is only one indicator that I know of; the longer you have to have drains in after surgery, the more likely you are to develop lymphoedema - it is an early indication that your lymphatic system is already starting to labour.
My advice would be - get a someone (OH?) to take some baseline measurements of your arm BEFORE you start rads and repeat them at regular intervals (perhaps fortnightly) - that way you should get an early warning of anything untoward happening and be able to make a song and dance about getting some help before it gets worse. The early it is detected and treated, the better. That said, don’t get hung up on small changes unless a pattern develops - we all swell up naturally and a hot day can make quite a difference.
In my ideal lymphoedema world, we’d all have been issued with a sleeve to wear prophylactically when carrying out all those activities that our compromised lymphatic systems might struggle to cope with. These would include shopping, gardening, lifting children, ironing, hoovering etc. (The reduced cabin pressure associated with flying is another potential trigger). This doesn’t happen.
What to do, then? Be nice to your arm - for ever. Support it with a cushion under the elbow when resting, don’t lift anything heavy if you can possibly avoid it, avoiding repetitive action over prolonged periods, keep it moisturised, do the exercises. If you enjoy swimming, go for it when you get the OK from your onc/rads team, as it provides a wonderful combo of compression, cooling and exercise which ideal both for lymphoedema and preventing it. Treat any bites and scraches straightaway with antiseptic cream and keep a lookout for signs of infection. Wear gloves and long sleeves for gardening and rubber gloves for housework.
Finally, NEVER, EVER, let anyone (no matter how many letters they’ve got after their name!) take blood, give an injection or take blood pressure on your at-risk arm. They MUST use the other one instead. Lymphoedema awareness isn’t good in the medical profession, so be prepared to stand your ground on this one - it’s important - don’t let anyone tell you otherwise.
Sure I’ve forgotten loads - anyone else?
Good luck Jo
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PS - Lots of chat about this in the Lymphoedema section of this forum
I echo Bahons’s comment regarding standing your ground with regards to there being a bit of ignorance within the medical profession with regards to the injection/blood pressure issues. I was appaulded that the very 1st time I went for anything that required a needle I told the person in charge that my right arm was out of bounds … she replied ‘oh it really doesn’t make any difference you know’ but respected my decision … what made this worse was that it was an isotope injection for a bone scan so you really would think that the staff doing this would be clued up.
My physio is well educated re lymphodema and says that the absolute worst and a 100% no-no is blood pressure as this crushes the lymph channels which are very close to the skin.
I had 29 rads (25 to chest, armpit, neck and an area on my back) and 4 direct to the tumour site … my arm did return to being achey and I got stingy nerve pain for a while but this was explained as the rads irritaing all the tissues that had previously been aggrevated by surgery. I also got a bit of a hicky cough as the rads hit the top og my lung but I was warned that might happen and it soon settled down once the rads had finished. I’m 3.5 months post rads and apart from a well faded tan I am almost back to normal.
Good luck with the rads.
Hi Jo,
I have noticed increased wheeziness in the past few years and a recent CT scan showed I had radiation fibrosis in the apex of my right lung. This makes me slightly breathless and not good when climbing hills.
I had my radiotherapy in the good old days of 1990 when I think the doses were higher and less targetted. The wheeziness seemed to start about a year after I’d had FEC chemo in 2002, following a new recurrence plus secondaries. Don’t know if the two are related.
I have right shoulder problems and weakness and poor grip in my right hand plus sore wrists but am not sure if this is due to the radiotherapy or arimotase inhibitor - probably a combination of both.
Wendy x
Thanks Ladies
That was very informative and helpful. I think swimming is a good idea then.
Seen the thread on Recon Surgery about Ava W-M doing lipo for ‘concrete boobs’ after rads!!!???
Oh well I suppose ‘what doesn’t kill you makes you stronger’.
Jo xx