Correction - I was talking semi-rubbish. The NICE Guidelines DO recommend exercises etc, but specifically for those who’ve had surgery to the axilla, and the words I quoted were under a section headed “Lymphoedema”. So they’re concerned about that, but there is no mention of exercise being recommended for those undergoing rads.
Sorry for mis-reading and misleading!
Sarah x
Hi
Well, that’s the problem in a nutshell! The after effects of all this treatment, which has to be done, are not so good, and there are so many other new ladies to start on treatment etc etc, so I think consultants move on quickly from longer term issues of this type. This isn’t a gripe at all about the medical/nursing side of things because they have been really concerned to get me better. It really was a comment about the radiotherapy after effects as regards what a physio might be able to do to help. There is no dedicated easy access physio/exercise group session, and I think there should be - because that would have suited me.
BUT perhaps I’m in a minority of one! I don’t know whether the sort of problems that I’ve had are common or really quite rare, so perhaps there isn’t as much call for it, as I might think. There was no shortage of leaflets at all, but when everything got swollen, stiff and corded, I needed the “trained human being” to assess the situation - and it took too long to access, in my view. When I eventually got to a physio, she added in a number of other moves which were very sore to do intially, but which I’ve persisted with, and hopefully - fingers crossed - will pay off in time. But I wish I had some sort of research based evidence that this regime will be better in the long run than just ordinary every day activities. I.e. will the stiffness/fibrosis be less in the long term for the exercise. Same for the stiff boob for those who’ve had a lumpectomy.
I will settle down to read that Brazilian article link above! Sorry for the long ramble, not sure it all makes sense. K x
You make a great deal of sense and I agree with what you said.
Even the BCC leaflet, good though it is, is aimed at women having surgery, not rads. The only exercise info I’ve had which is specifically aimed at people undergoing rads and afterwards is the leaflet I got when I attended the rads physio class at Christie Hospital. It also gave a direct phone number for the physio dept if you started getting problems.
Sarah x
This is making me seriously scared now, I’ve bought all the fragrance free shower creams and stuff for my skin in anticipation of starting on the 9th, but feel so afraid that I’m not equiped to deal with possible stiffness/hardening.
Why did my consultant and oncologist make out this rarely happened, it was only the younger registrar who said I would probably feel a differance to my breast.
I don’t want this, not at all…Is there anyone out there who’s had treatment at St. James, Leeds, do they provide advice?
All this makes the WLE seem like a walk in the park.Oh and whilst I’m on a rant, my appointment are going to be at 17.30 hrs, slap bang in rush hour, with a husband driving who hates driving in the dark, hey ho only 15 sessions.
Thanks to all you lovely ladies for sharing your experiences.
Andrea
Hi Bannibug
It’s strange that oncologists and consultants seem to think this doesn’t happen very often, but if you read the info on BCC, Macmillan and Cancerhelp, they all warn that stiffness and shrinking are common side effects to rads. I suppose we have to focus on the benefits - it mops up any stray cancer cells that may be lurking in the breast after a lumpectomy. Plus these days supposedly the rads are applied more accurately therefore with less side effects, but of course we won’t know how true that is until we see the statistics which include us in 5 or 10 years’ time.
In my case the stiffness only really started to kick in about 3 months after finishing rads, but that may partly be because that’s when I returned to work and started sitting at a desk for hours on end.
Cheshire Cheese, After reading how your hospital offered physio support/advise, I rang the very helpful macmillan radiotherapy specialist nurse who contacted their physio department and someone is going to come and see me at my first treatment(wed)!They have said massage could be beneficial to reduce hardening but they would not recommend it until treatment is finished.
This is great for me, but it seems you need to be in the know to get maximum advise and that it is’nt freely available to all unless you specifically ask.
CHEERS
Hi Bannibug
Useful to know that the physios recommend massage, I’ve been wondering whether I should ask for physio help now I’m getting more stiffening. I’ve been exercising madly, which is helping a great deal, but it sounds like I should ask to see a physio to find out about massage. Thanks for that!
Sarah x
Just bumping this thread as I have recently started Rads and found this thread very useful.
Hi ragamuffin
I thought it might be useful for you to have an update from my last post on this thread. I did follow up on Bannibug’s suggestion and went to see a physio and found it really helpful. Not only did she massage the stiffened up bits but she also massaged the surgery scars and showed me how to do that as well. I didn’t even know that physios can treat scars but it made a great improvement and I’m so glad I went to see her. I had been doing Pilates exercises before the surgery, ASAP afterwards, and still carrying on with them now - so it was good to hear the physio say that I had been doing the best possible thing to help myself by doing that.
Since being back at work I’ve been exercising several times per day by stretching my BC side whilst holding a bottle of water - quite effective, even if I look a bit silly, but I don’t care about looking silly if it helps!
Sarah x
Thanks Sarah - I have only had 7 sessions of Rads and 23 more to go.
My hospital has a good back up system- went to a BC specific class last week run by Physio, Lymphodema Therapist, and Radiologist and each week I’m seen by BC nurse in the radiology department. I have full range of movement, no stiffening so far, my scars are still soft and skin in good condition. It will probably be a very different story the second week of July but at least thanks to you and the other ladies on this thread I am prepared and know where and when to look for any help I need.
Diana
Hi Diana
What surprised me, because I hadn’t been sufficiently warned about it, was how much stiffening I started to get several months after finishing rads. All the info says things like “you may experience some stiffening after rads”, what they don’t make clear is that it will tighten up a lot later on, and it’s quite different from the tenderness and tightness you get immediately after rads.
I’ve since discovered that this is the pectoral muscle stiffening and is due to radiation fibrosis - basically scarring caused by damage to the tiny blood vessels within the breast.
I’m now 8 months post-rads and still having to ease it off. Some women on here say they’ve still got the effects years later.
But it’s probably better than the alternative of not having the rads.
Sarah x
Thanks again Sarah- yes it was stressed at the class I attended how important it was to do the exercises to stretch the pectoral muscle.
I didn’t realise how long after rads finished it could still be a problem. It was recommended to keep the exercises going for a couple of years after treatment.
As you so rightly say - better to have the effects of the rads than not have the rads at all.
Diana x
Im glad I read this thread Ive got my 1st appointment next Tuesday for measure ups & all I have been keeping active & doing the stretches excercises since my surgery 5+ weeks ago the stiffening & shrinking worries me they’ll be nothing left to my little thing lol im very small. I also still have hardening still either side of the scar & where the lump was removed
Is the shrinkage perminant or will it eventually fill out if say you put on weight ? im just managing to maintain my weight as I lost some due to a healthier diet (no sugars / processed foods) also lost some during the real stressy part of being diagnosed back & forth for results treatment plan just gor back nearly to my normal weight although still quite boney on my chest not that I had alot of meat there anyway, think id feel more happier if I could get some meat on my chest bones the weight ive put back seems to of gone to my belly (typical) Ive got myself some organic Aloe Vera gel 99.9 % so any surgestions would be great
Thanks
Mekala x
still have 4 more chemos before I start my rads. I’ve been researching the US and UK sites to get an understanding of what to expect. I notice there is a big difference in many hospitals for how many rad treatments you get. The US seems to have a standard of 6 weeks and the UK 3-5 weeks. The longer periods with lower dosages seem to have a better cosmetic effect on the breast. Some centres use 3 weeks because they have so many patients to get through. My Onc said I’m having 23 treatments, my sister-in-law in the US will have 33…I might ask to speak to a radiology oncologist regarding these issues.
Thanks for that noanie … thats interesting the differences between hospitals & countrys are. Id like to think they wont cut you short just because they have so many patients at the moment we all have to go to one hospital for rads which is quite a way for me (not the hospital with Breast clinic & where I had my surgery) they are at the moment pushing to get a radiotherapy department in this hospital
hate to think id not be given what I should have due to patient numbers but you just never can tell with NHS cutbacks.
Hi All
From what I’ve read (and I’ve been doing a lot of reading!) various trials have been done which tested out how best to apply rads and those concluded that 40Gy over 15 treatments, i.e. 3 weeks, was the optimum and that’s what the NICE Guidelines now say. Some people will have boosters in addition to that, to the site of the tumour. Those centres which do 25 treatments are still applying the same total dose so you’re not missing out on anything by having 15, except the extra hassle of travelling to and from the hospital every day.
What we SHOULD be asking questions about and demanding information on, is why so few in this country get the targeted type of rads (IMRT or tomography). Most other countries have moved on and most use targeted rads in the majority of cases, particularly for BC since the breast is such an uneven shape to treat. The reason so many people get blistering and tenderness etc is because they get conventional RT which causes overlapping fields.
It’s yet another of those areas where we sadly lack info and it makes me angry! It suits the NHS that not too many of us are aware of the alternatives and therefore don’t ask for them. The sad thing is that most rads centres have the hardware to do the targeted treatment, but lack the staff to plan the dosage, or radiologists to apply it.
Even Eastern European countries are ahead of us on this!
Sarah x
Thank you Sarah wow sure does make you think & yes its something that makes me angry too. I may put this to my onc Tuesday see if he gives me one of his “leave it to me I know what im doing looks” lol Im stating to get the jidders abit about the rads whatever ive read & the booklets ive read from the hospital just seem so basic & straight forward like its nothing to worry about … well yeah your about to microwave my boob !
I was lucky and had the IMRT (Intensity Modulated Radio Therapy) version, although I wasn’t even told that until half way through treatment. I’ve had very few side effects really, mostly stiffening up, but very little shrinkage so far (9 months on). I got a bit of tenderness during and immediately after rads, but nothing compared to what a lot of people get, and it all died down quite rapidly. I’ve continued to exercise my shoulder and chest muscle rigorously and I’ve benefited from that.
Sarah x
Thats good sounds good & positive … I hope I dont get the shrinkage they’ll be nothing left ! I wonder if the hospital im going to does the IMRT ? ss its the only one in the area that does the rads. keep up the good work your doing Sarah
Mekala x
Hi Sarah
How do you know which type of Radiotherapy you are receiving? I think I’m having the IMRT as well but if you don’t ask the specific question how can you tell? If you aren’t having IMRT what are the machines like and what does the planning entail?
Thanks.
Diana