Please can anyone explain why rads cause the breast tissue to stiffen up? I’ve searched all over the internet and founds lots of places that say rads cause stiffening (i.e. radiation fibrosis), but not WHY. I’ve found a few mentions of it being caused by scarring, but can’t find details of how this happens, or what (if anything) can be done to minimise it.
I can only assume that it’s because the rads kill off lots of cells, both healthy and cancerous, and it’s that that causes the scarring and hence the tightening effect.
Can someone more knowledgeable advise please?
Sarah x
In laymans terms i was told by radio people that radiotherapy burns the tissues in your breast and this will mean they will shrink, tighten and scar. If you think of any general burn on your skin, it tightens and pulls doesnt it?
hope that helps a bit!!
S
Hi, I was interested in this myself.
abcnews.go.com/Health/OnCallPlusTreatment/fibrosis-radiation/story?id=3644936
Question: What is fibrosis, and does radiation therapy for breast cancer cause it?
Answer: ‘Fibrosis’ is a medical term meaning scarring. When radiation is delivered, it affects many cells – not only the cancer cells, but normal cells as well. Some cells that are particularly sensitive are the cells that line small blood vessels. When radiation is given, some of these very tiny blood vessels are damaged, and sometimes, destroyed. That makes some parts of tissue receive less blood supply. And some of that tissue, therefore, is not as well-nourished and as viable as it was in its pre-treatment state. In that case, some of those tissues can ‘fibrose’ or scar. And, the breast is susceptible to that. What we experience is a firmness to the tissue. And maybe even sometimes an area that feels almost like a mass or a recurrence.
I think that most patients get some scarring from radiation. Sometimes it is so subtle it cannot even be appreciated. In the occasional patient, it is much more apparent. We have relatively little basis in which to predict who is going to be that rare patient that sees much, much more scarring from their treatment. And one of the interesting research questions in radiation is to create some predictive assays that would say to us, “This particular patient is much more sensitive, and we have to modify the dose in some fashion to prevent scarring.” The scarring itself has no inherent danger. It is much more a cosmetic issue and also one that affects, in some cases, the appearance of the mammograms, since scar tissue is more dense.
Hope this is useful. Take care x
Quoting a little bit from fitgirl’s post:
“What we experience is a firmness to the tissue. And maybe even sometimes an area that feels almost like a mass or a recurrence.”
I don’t have an answer to Sarah’s question but wanted to add my experience in view of the sentence quoted above. My first lot of radiation was back in 1990 and my breast was left a solid mass by the time I had 30 rads sessions + 5 boost sessions. Over a few years it became more and more solid and after 5 years I felt things were changing for the worse and was convinced I had a recurence. I got the response that it was just the after effects of the rads!!! but I am a very persistent person. Of course I wanted to believe what they were telling me, but somethng kept gnawing away and I wasn’t convinced. A lot took place between my first awareness that all was not well, and getting them to believe me. Eventually I had a mastectomy and the ca. had spread throughout the breast. What am I saying by relating this?..If you have any doubts don’t let it rest. Hopefully you won’t need to because I do believe radiotherapy has improved a lot since 1990.
Dawn
xx
Thanks for the feedback, that makes sense to me. And a useful warning from Dawn.
Presumably it’s the scarring from cell damage that causes the shrinkage. So does that mean we can reduce the effect of it with exercise, like you can for example with the surgery scars, to stop everything tightening up?
Sarah x
Hi,
I had radiotherapy last July - 5 weeks of it.Also had WLE and SNB. I had read on some American site that you should try and massage the boob and do regular exercises to the arm and chest area which i’ve been doing. I use an organic Vitamin E oil (from Holland & Barrat)to massage on my scars and i do think this helps. I also do short stretching exercises during the day.
I do get the odd ache and it’s been a bit sore lately but i’ve had a bad cold and cough.
There really isn’t that much information on this, is there? I might be doing the wrong thing. You just want to help yourself as much as you can don’t you? Take care. x
Hi fitgirl
Yes, a surprising lack of info. We want to do what we can to help ourselves but the information isn’t out there. When I ask questions of the breast consultant or BCN I don’t get any useful feedback. I suspect there are so few people who are prepared to do regular exercise that they really don’t know what difference it makes.
Like you I exercise the arm, shoulder and chest area regularly, plus sit at work doing stretching exercises from time to time through the day (don’t care if I look daft) and applying rose hip oil (high in vit E) to the scars each day.
I’ll just keep going with it in the hopes that it will minimise shrinkage and stiffness.
Sarah x
Signed the consent form for rads today, got the tattoos(the cleavage one does’nt look too bad,side one looks like a dodgey mole!)
Felt a bit apprehensive when the oncologist’s registrar told me my breast would possibly look the same as before but It would probably feel differant.Not sure if he mentioned 10%of women suffer this, could be wrong, I’m all statisticed out now.Ive now got two weeks before it all starts in which to lose some weight as was made aware once it’s done ,radiotheray suspends the affected breast in time!Unfortunatley have’nt yet found a low calorie version of Pinot Grigio.
Hi Bannibug
You sound like a woman after my own heart! When you find a source for low cal Pinot Grigio please will you ask them if they also do a low cal version of Valpolicella?
By the way, saw my GP this evening and asked her if exercising to reduce the stiffness in my boob would also help reduce potential shrinkage and got a definite yes. It’s the scarring that causes both, so exercise will help both.
Sarah x
Cheshire cheese, when you say "excercising"were you given specific excercises to do from the hospital?
Also can any one help reassure me, I was given a booklet informing me I would need to go on a simulator before treatment began as part of the planning, when I went yesterday I had a c.t scan but not the simulator, was that an alternative?Another concern is they’d pre arranged for me to have treatment on one machine but after the C.T said I would need to have Rads on a differant one, does anyone know what criteria is it that determines what machine you go on. I thought all the machines were the same?
Over the course of my rads treatment I went on five different machines due to breakdowns delays etc so I wouldn’t worry about that too much. I also had a ct scan for my planning. Try not to worry too much treatment doesn’t take long the worst bit is the travelling (for me it was 140 miles round trip) Use plenty of aqueous cream to keep well moisturised and rest up when you need to - you will get more tired than you think. Good luck xx
Smiley 60, Thank’s so much for your reassurance,obviously not everyone goes on the simulator.
Hi Bannibug
The hospital where I had rads (the Christie in Manchester) offered a physio class to those due to have rads and encouraged everyone to do it ASAP, preferably before or at the start of treatment, so I went to the class just before my first rads treatment.
If you’re not in the habit of doing any arm/shoulder exercises it would be helpful, if you exercise regularly it wouldn’t.
I’ve been doing Pilates for a number of years and that was very useful because I had excellent mobility of the arm/shoulder before surgery and rads which made it easier to regain it afterwards.
You can get a leaflet and DVD from the BCC website (once again I’ve forgotten where to find it - moderators help please!) which are very good and worth following. I found I needed to do the exercises around 5 times per day in the first few weeks after finishing rads, reducing gradually to twice per day now I’m 4 months post-rads. But I’m particularly keen not to end up with limited shoulder movement, having seen how my Mum ended up after her BC and now with severe arthritis in her shoulders.
Sarah x
P.S. I’m finding that my boob is stiffening up more now than it was in the previous months, so I’m doing many of the exercises with the addition of small hand weights, as suggested in the BCC leaflet. Just one pound in each hand, but it makes the chest muscle stretch that bit more.
Good to know that the exercises may be helping. I’m not brave enough to do them in the office, i go through to the loo at work and do some stretches in there! I have just been doing exercises from a BCC leaflet that i got when DX, it was info on recovery after surgery. I’ve also been going to Zumba classes, which are good fun.
I used Radiance Gel from Penny Brohn website during rads , expensive but it’s pretty good. I used Aqueous just before the treatment then the Radiance gel for the rest of the day. Two BCNs commented on how well my skin looked after 5 wks of Rads. I was on about 3 different machines as well - due to maintenance days. I think you are tired due to the travelling but also i think it’s just the worry about the whole dx. The rads are over very quickly and the staff were really nice but i was shattered by the end of the 5 weeks though i went into work every day after my treatment. I ended up having to take time off after it finished though.
I also read somewhere that it’s good to exercise the chest wall to make sure the lymph was moving about properly, don’t really understand that bit…
I’m going to have Lipo done and the surgeon said that should make the tissue feel softer. Take care x
Hi Interesting thread. I kept asking if I should do exercises during rads or if there were physio sessions available - I was keen to prevent any shoulder stiffness or any bad effects . Prevention better I thought than dealing with problems after. I was told NO - they only do physio if there is a problem - typical !
They also pointed me to the exercises recommended after breast surgery. I felt they were loathed to recommend anything else - maybe in case of repercussions ? anyhow I was sure the post surgery exercises werent enough for me during rads and sure enough , found a research study which used a more comprehensive set of exercises and they did have benifit for rads treatment. I’ve continued to do those , most days post rads. (finished Dec 3rd last).
Also - have recently got the BCC DVD on exercise and reckon this is based on the research mentioned above - Cannot recommend this DVD enough - and its free. includes a "Class’ - which you can have in privacy of your own home. I think it needs better advertising and emphasising its for later in our journey not just around surgery time.
on the side effects - my bad side felt normal until a week or so ago, now (some 8 weeks past rads) it feels … like something wrong with the whole breast - on the inside, I"m miffed, as done so well up to now. its not hard at all - yet, but feels as if something is going on in there !!! also the inner muscle above the elbow is sore - almost a 'cording ’ feeling, not had this before. but then I did add weights to my exercises last week - maybe 1kg was too much straight away ? did try the water bottles first but that didnt seem to be having any benefit. Shoulder is getting stiff too, must do exercises more often than once a day. Need to get to bed, am seriously rambling here !!!
Please keep posting about effects of exercise. Thanks Kirsty
Hi Here is the link to the research on exercise and it also contains the chart of exercises that I’ve been using - it isnt very clear but you can just about make out the positions if you print it out. I’ve got it up on the bathroom wall - like doing it there as warmest room in the house ! not enough room for floor ones though so dont always do them. might frighten hub - if he finds me on the floor !!
scielo.br/scielo.php?pid=S1413-35552009000200008&script=sci_arttext
extract Conclusions
The results from this study support the proposal to provide physical therapy during RT, consisting of shoulder exercises. Physical therapy favors the maintenance of shoulder ROM in relating to flexion and abduction and minimizes the occurrence of scar tissue formation (adhesion) in women with breast cancer, during the first six months of follow-up.
So why dont we get recommended exercises then ? routinely, when about to start rads . I guess they have to throw lots of money at it first - with a bigger trial , then NICE to evaluate and make their ruling ?
How about some common sense - exercise cant be bad for an otherwise healthy person. Is it the fear of getting sued ? no wonder NHS short of money.
and that brings to me wasted medications - did anyone else get given massive amounts of medication that they didnt need at each chemo treatment ? I kept saying , "I’ve got enough of x , y, " Dr nodded but still wrote the prescription and chemo nurses gave it me. I now have 2 large carrier bags of meds to take back to the pharmacy - What a waste !!! mulitply that up , for patients and treatments.
Time for bed !!!
Hi Kirsty
As I said earlier in this thread, the Christie Hospital do strongly recommend exercise, so much so that they hold physio classes for anyone doing rads. But many women on here have said that their hospitals don’t offer anything, even if they ask. They only get physio once they’re actually suffering from limited movement or cording, which seems a bit late. Prevention would be better (and cheaper) than cure.
Sarah x
Interesting discussion. It has taken me a long time to understand the sheer total discomfort post-rads, and how stiff, sore and painful my chest/arm is. Reduced the exercises while staying with family over Christmas, cold weather, general fatigue etc etc. Bad idea. I now try to do 20 mins morning and evening, but whether that’s the right thing to do - who knows? What if I’m making things worse??
Nothing much at all provided where I am. Have had, and still have, problems with cording. I always suspected I needed physio, but it took months of nagging/waiting to get it. It would be brilliant if there was a regular drop-in exercise session at the hospital, then you could get some on-the-spot encouragement and a bit of feedback. And a much quicker route to a physio if needed. After all, if you can provide this for post-natal care, why not this. I think it really needs more than an exercise leaflet to get over the issues after rads. But perhaps this doesn’t affect enough people. K x
The NICE Guidelines for treatment of early breast cancer (nice.org.uk/nicemedia/pdf/CG80NICEGuideline.pdf, page 23) state that your breast unit should “Give instructions on functional exercises, which should start the day after surgery, to all breast cancer patients undergoing axillary surgery. This should include relevant written information from a member of the breast or physiotherapy team.”
So if your hospital are not doing that, they are failing to comply with the NICE Guidelines and you could point that out to them.
I suspect it’s because the consultants don’t take much interest in it that it doesn’t get increased priority. The attitude of both my onc and the breast consultant were to assume everyone gets stiffening and shrinkage, maybe because most people aren’t willing to exercise enough - whereas I would rather do something to prevent it.
By the way, I find a 500ml bottle of water on my desk at work makes an excellent hand weight if I need to stretch hard - but then I don’t care what other people think!
Sarah x