Thanks for that, gives me more food for thought, anyone out there experienced lung or heart problems associated with radiotherapy-(I'm getting seriously paranoid now)!!!!!!!!!!
I agree with Gwendolyn, Mx is a major operation. I wouldn't undertake that just for fear of rads side effects - although there may be SOME stiffening and shrinkage (all the standard leaflets on rads mention it), it's usually not a big deal.
In my case I had hardly any effects from the treatment itself either during or immediately afterwards. I went a bit pink and warm, got a tanned square and a tender nipple, but within a few weeks that had all died down. The only long term effect I've got so far is the stiffening. But to put that in proportion, I've probably got better mobility on the BC side than most people without BC, thanks to Pilates exercises.
All the medical professionals I dealt with, the onc, the BC and the radiographers, all assumed there would be some shrinkage, the only thing that they disagreed on was how long this would continue. None of them seemed to know anything about the stiffening effect.
Bear in mind that any data on reported side effects is always going to be out of date since it's based on historical data and the treatments are improving all the time. So more recent SEs tend to be milder.
Just to throw another spanner in the works. I had 2 WLE ops (discovered different cancer) and am having filler to smooth out the scar of the WLE. My consultant also says that it is the untreated breast that over years becomes more droopy /weight gain that makes the other one look smaller. He says I can have any future discrepancies sorted out if I so choose. Mx is a more serious operation and has it's own problems.
Cheshire Cheese-It sounds like your oncologist more or less implied that it was a fore gone conclusion that shrinkage would happen yet mine said it rarely happens?Is there any wonder we get confused. It is for this reason plus my fear of other potential side effects that I'm seriously considering a MX as a prefferable option. I have seen my consultants handy work and he is top of his game.Could I end up with a more disfigured breast for having radiotherapy and still have a 15%chance of recurrance?
Feel like not turning up on Friday and leave it in the lap of the gods.
That agrees with what I've been told and what I've read - the irradiated breast will tend to stiffen up and shrink due to the scarring caused by the radiation. The other breast will continue to sag with age as normal, so the difference will look worse over the years. This was one reason my breast consultant recommended having the non-BC breast reduced to match the BC side, but she had a bee in her bonnet about not doing it for several months until the shrinkage had occurred. The onc said this could happen over several years so I might as well get on with it.
By the way, my Mum had a WLE and no remedial surgery about 10 years ago and is now in exactly the situation my BC described - one misshapen but firmish boob and one very saggy one.
I've found that I can overcome the stiffening effect with excercise, I'd love to know if this might reduce the shrinkage. Does anyone out there know about this? I've tried to find info on the internet but failed.
I,ve replied at length to mazonga71 However just wanted to say I met with oncologist and then consultant yesterday with intention of making decision re treatment, worried about breast shrinkage after radiotherapy and asked oncologist about this, he appeared surprised that I knew of two ladies who had suffered this anf felt it was not likely to happen (he obviously does;nt read this forum!!!
The consultant's comments were even more surprising as he beleaved the radiated breast becomes suspended in time and it is the untreated breast that over years becomes more droopy /weight gain that makes the other one look smaller.
Needless to say i have not made up my mind, Going back again on Friday (what's the point!!!) Consultant said he would get a decision out of me, perhaps were going to sit down and toss a coin next time!!!
Thanks for your comments. I'm also worried that the thickening of tissue from rads would make it harder to detect a lump? I self-deteced my tumour when a mammogram 15 months before had picked up nothing - although the bc might not have been present then. I have been doing self-examining regularly and the scar tissue from surgery makes it hard to feel for lumps. It is all so frightening.
It's all so confusing isn't it? All this talk of shrinkage and yet since my rads ended on 22 October my DIEP reconstructed breast has grown and lifted! It has taken on a life of it's own.
mazonga71 hi I had 4 years ago lumpectomy rads and still taking arimidex. I had stage 2 no lymph node involvement. There was really for me no effects whatsoever from radition. Bit of a sore-ish area for very short time but nothing much really. The ONLY effect I have found is the affected boob is smaller than the other slightly, I THINK this may have been from rads.
Bannibug - I'm wondering how you are and what treatment decision you made? I also had Wide local excision, grade 1, stage 1, EST+ PG+, Her-, 0/2 lymph nodes (I am 39 yrs). had surgery Oct 20th and have postponed rad twice, so am coming up for 3 months since surgery, which I know is outside of NICE guidelines. I cancelled rads on 4th Jan and have felt anxious since. I am seeing a herbalist who works alongside oncologists, she has been giving me herbs and already my hormone levels are balancing out (I have had problems for years). I've made diet changes, lifestyle changes - for instance, had a drinking problem before diagnosis that I was having counselling for but gave up instantly when I got diagnosed. I'm having acupuncture which is having incredible effects. I have also been in an absolute panic about what choices to make and am considering going ahead with rads. The side effects just seem horrendous and I feel I have realy embarked on a path of healing already. the BCN said that she thinks 6 months + is when rads become ineffective. How are you and where are you in terms of treatment plan? Also, I'm interested in other people's experience of rads and/ or going without them. I know someone who said she no longer sweats from the breast she had irradiated, surely that can't be healthy?
Interesting that now I've started back at work, although only part time, my BC breast is stiffening up more, presumably due to lack of movement since mine is very much a sitting-at-a-desk-in-front-of-a-computer-job. I'm having to do the stretching exercises more often.
I finished 25 rads over 6yrs ago. My breast is still quite tender but feels exactly the same as the good one, however there is a thickening under my arm which I've been told is quite normal after rads and is there for life, and I still get cramp in the radiated area. I took all the treatment they could thow at me and was greatful for it. That way if it did return I wouldn't be saying 'if only.'
Thanks very much for that feedback, that's quite reassuring that although you suffered shrinkage for some weeks after finishind rads, it didn't continue much after that. I had a bit of a debate with my breast surgeon over this, she didn't want to operate to even up my non-BC breast for several months to allow for the rads shrinkage, but in the end I persuaded her to do it 9 weeks after the BC op because I was so upset by the asymmetry. I'm now 2 months from that 2nd op and the BC breast doesn't seem to have shrunk much more and I'm delighted with having a (nearly) matching pair of breasts. I was warned that the shrinkage could continue for years, so I'll have to wait and see.
I am 2 and a half years post rads.
I experienced nerve pain during rads (the placement of my arm during rads aggravated some cording) I have received some physio support about connective tissue stretching and am now discharged from regular review as the exercises are now incorporated with my usual exercise(mainly swimming) and I now know what to do if I encounter a problem. However although I don't do my exercises regularly now I do restart them if I find my shoulder movement is painful or restricted.I no longer experience nerve pain.
With regard to breast size and hardening I found that my breast shrank further following rads and the partial prosthesis that I had been fitted with 8 weeks after surgery needed reassessing a month or so after rads. I had a reassesment of prosthesis 2 years after rads and found that size of prosthesis was no different than the prosthesis I received after rads.
Hope this info is helpful and possibly reassuring.
I FINISHED MY TREATMENT BOUT 4-5 WEEKS AGO still feeling bit tired im also experiencing some stabbing pains around my treated area found arm excercise helpful to raising above your head my skin still very tanned but flaking in areas but seems to be improving daily
Cheshirecheese- Thanks for response, no I have'nt had chemo, just WLE,
Ladies I'm going crazy with indecision, 6th Jan not so far away and still no closer to a decision. If I have rads I've a 10-15% chance of recurrance and next time could be invasive, scared of what I've read about possible long term side effects of rads(heart/lung getting small amount of radiation),breast shrinkage.On the other hand MX when it may not come back ,too excessive?Then again I would'nt have to spend every waking moment worried that it would come back.Just read the message on this thread re rads being given within 7 weeks, i'ts going to be 6 weeks before I see the oncologist due to my dithering, have I messed up by not making up my mind? Consultant said I could wait till after xmas so I presume all's o.k
I just want to be told what to do and I know that's not going to happen.
Keep talking to ladies who have had both treatments but am getting no closer to a decision, in fact my head is a shed!!!!!!!!!!!!
just seen the thread.
I had blisters and peeling coming and going until April, after finishing rads in the December. I think I stopped feeling tired about the end of June but I still get pain in the area every so often a year on.
Manuka honey dressings from my BCN helped with the healing.
Hello all, I finished 28 radios at the end of May and that after chemo. I am still very tender underarm. I was very stiff in arm movements in certain directions but physio sorted that out but my neck and shoulders are still liable to stiffness (related? I don't know). Also I find that under my breast, where the bra rubs can get uncomfortable by the end of the day despite the fact that I often just wear a support vest a lot of the time. I have lost size and they hang at different levels!! So have to choose patterned tops etc. I too get the sharp stabbing pains in the breast. Interested to note that someone was told it was nerve endings. Just as I think that they are gone than I get 'stabbed'. Can be very uncomfortable for a short while. But skin is now soft and scarring is neglible. Was told not to carry any heavy weights with the relevant arm.
I did not find radios onerous just a bit boring every day. Tried to keep up the exercise. Wish I had a Pilates group here, did enjoy it when I went. Good luck to all. xxxxx
I think it's a combination of both. The lymph node surgery causes some nerve pain, but not mind-blowing, if as in my case you only have two nodes, and I didn't suffer any tiredness. I believe (not done it myself thank goodness) if you have been through chemo then rads are the last thing you need and are very tiring. You are treated like a lump of meat that needs to be irradiated for however many sessions someone has decided. You turn up on time for the treatment, only to discover that the machine has broken down or they are running late, etc, and it all becomes a massive wind up. Hated it and couldn't wait to finish, but mostly because of peripheral trivia like there was a woman who was usually ahead of me for treatment who used to chat with everyone in the waiting room about all her treatments, side effects, etc. Excuse me, I don't want to know, just treat me as quickly as possible and get me out of here! However, some people seem to enjoy the socialising in the waiting area and miss it when they've finished treatment. Each to their own!
On a more practical note, I found the rads easy although very tedious, and the side effects negligible.
I've been reading this thread with interest, 6'th Jan I decide whether to undertake Rads or go for more drastic treatment/surgery. The shoulder/ arm pain/discomfort you ladies mention, is that caused by the radiotherapy or is it previous surgery that causes it?
Like you I am finding that Pilates exercises are proving a winner in dealing with the post-rads stiffness. In the first few weeks after finishing rads I needed to stretch my armpit and breast area about 5 times per day, working really hard at it, but now doing it only twice a day. If I don't do it my boob starts to set solid.
Really interested in this thread because I finished rads in May and have found that breast chest and underarm all seem to have hardened and stiffened and are quite uncomfortable all of the time. BCN said this was to be expected and would probably be with me forever!Hope not. Have good movement in shoulder and arm and put this down to Pilate's which I did before dx and continue to do once a week.Would really recommend it. Like Roadrunner I find if I don't keep exercising it stiffens up and have sent for the DVD to do as well.
Hope more people who have finished for a few years post with their experiences. Marli
PS Just wanted to add, I know some of the stuff i mentioned is mores suitable for when radiotherapy is taking place, but some of it may help post-radiotherapy too.
Hi everyone, I just wanted to post a couple of things that might help. The Penny Brohn Cancer Centre in Bristol have a cream (radiance cream) that has been demonstrated in tests to be more effective than aqueous cream. they also provide other supplements that help with radiation side effects, for instance, astralagus, which has been shown in some tests to make radiation more effective at targeting bad cells. All of this can be ordered over the phone or online. they also run free residentials for people who have/have had cancer. I would whole heartedly recommend them. Jane Plant (Your Life in Your Hands) recommends eating seaweed, an organic egg and lots of garlic daily while you are having radiotherapy, something to do with the anti-radiation diet followed by astronauts. Herbalists and homeopaths can treat you to protect and repair cells and to make radiotherapy more effective. I am currently on both homeopathic and herbal treatment as i am due to begin radiotherapy (although I am not certain I will undergo this treatment). best wishes to you all.
I am three years on from rads. I can't remember now about stiffness, but I continued to get random pains in the area for a long time. I haven't had any for a while now, but don't know if that means they've stopped altogether or just that they're getting more infrequent.
I sill do exercises every day to keep my shoulder & arm loose. If I stop it all tightens up. I assume I will be doing these for the rest of my life.
Hi Dotty2 can I agree with Poppy BCC.I regained quite good arm movement after surgery but during rads developed really uncomfortable sensations in axilla upper breast and arm all on affected side.Was sent to physio but she was at a loss as I can move my arm. I do think this is nerve pain and that I am impatient. However besides doing the exercises on the BCC leaflet 3 times a day I also use the BCC DVD and this has helped enormously in that stretching my arm seems to reduce the nerve jangling, prickly, shooting sensations. Hope this helps.
You may find our publication and dvd on exercise after treatment helpful, I have put the links to the informaiton below.
Thank you Cheshire Cheese.
Haven't been given any advice on exercises. I will ask Rads staff if they can supply some info.
Can only suggest that you do the recommended exercises several times per day, with particular emphasis on the ones that have you stretching your arm above your head. That should gradually make the awkward position on the rads machine more comfortable.
Hope this is the correct place to place this.
I'm 10 days into treatment, and have continious aches in one of my arms, suspect it is from having the arms up everyday. Spoke to the Radiotherapist who said she has heard of others with this problem.
Anyone else experienced this sympton?
Thanks for any advice, and good luck to everyone with their treatment.
It's 3 month since I finished rads, I was very tired during and after for a few weeks. I still do get tired some days. I have had a haematoma for a while but it seems to have gone down a lot in recent weeks and the pains I was getting constantly are subsiding. I do get some soreness on my ribs where I had the rads. I have also been getting stabbing pains which come on very suddenly.I mentioned this to my GP the other week and she thinks it will be nerve damage. Apparently when you have surgery they sometimes cut through nerves and it can take time for them to heal.
I understand that it can take a while to feel that you are through the other end of the treatment, but at least we are getting there!
I hope that this is of some help to you and i'm sure that other people will come to give you an insight into their experience of rads soon.
Hi Annie, thanks for sharing your rads experience, sounds like we are in for the long haul Sarah! Hope other post rad ladies can share their experiences.
i am 3 yrs post rads, i have now lost my "sun tanned breast " but it still is sore inside did mention it and was told just to take paracetamol so i suppose it may never stop being tender but the difficult bit is not knowing what is normal and what is not.
it did take 2 and half years to soften up again and is smaller than the other one but i think that is surgery too.
hugs to all
Looks like we're wasting our typing efforts here! I suppose all the others who finished rads ages ago have moved on with their lives and don't call in here any more - understandably.
Me too, I am 5 weeks post rads and very tired, bit down and have very sore joints, not sure what to take or if it's even a side effect as original thought was jetlag from long haul flights just after rads. Have been back 2 weeks but feel like getting worse. I too have the "electric shock" pains in left breast and nipple keeps changing colour/sore/peeling, might go to see GP to put my mind at rest - any others can share their experiences with us?
Bumping this up.
Please - I really would like some info from ladies who've been through the rads process.
I am 2.5yrs from rads and breast is still v tender. Also get terrible muscle cramps in chest from rads damage.
I'm keen to find out from others who finished radiotherapy a while ago (i.e. months or even years), what side effects continued afterwards, and for how long?
I'm 2 months post-rads & my breast is still stiffening up, so I wondered how long this is likely to last.