I am due to start radiotherapy next Thurs, nearly six months post surgery. My journey to this stage has been quite convoluted – I had to change hospital because my lumpetomy at Chase Farm Hospital was a disaster – and I’ve had other complications since moving to UCLH, though the care there is excellent. The latest problem is that my anatomy is such that more lung than usual will be exposed to the radiation – apparently, I will exceed the ‘safe’ limit of how much lung should be exposed by about 2%. My consulant radiologist is not happy about this. Though he is willing to proceed with radiotherapy, he would be far happier if I had a mastectomy. he has explained that the risks of me developing long-term lung damage/breathlessless are far higher than in most other patients.
I wonder if anyone else has been in this position. Also, I wonder if there is anyone reading this who is some years down the line and who could tell me about what side effects they experienced. I am fit and young and would find it extremely difficult to cope with not being to walk for miles, run up the escalators. I have been told that I might be left quite breathless by the radiation.
So far, I’ve not had very many lucky breaks with this horrible disease. I’ve even managed to develop lymphoedema despite having had only two lymhp nodes removed, and am terrified of damaging a healthy lung for the sake of a defective breast. And yet I have not been able to consent to a mastectomy. It seems such a massive step.
Hi Stoic,
I remember your previous post. It is so harrd when you find yourself in that ‘small’, rare statistic and really makes you distrustful.
I had rads. 2 years ago. You might remember I had problems healing. After this, I worry too about the long term SE’s. I heard one lady had a bolster made for her to keep her breast away from the chest-wall - could they do something like this for you?
One thing I wanted to ask you is what time of surgery you would have- you say ‘mastectomy’ but there this seems to sometimes mean different things? Would you keep your skin/nipple in the mastecomy? Or would you need to have all skin tissue removed? This might be important in your decision?
Good Luck, Rattles x
Hello Rattles
thanks for your reply. I don’t think they are planning to do anything extra for me – just the standard six-week radiation. I’ve not had an indepth conversation about the mastectomy but know that I wouldn’t be able to keep the nipple (though I would keep the skin – and of course the ugly carring from the wretchecly incompetent lumpectomy done at Chase Farm Hospital). I am very small, so I think their plan would be to use one of those expanding implants – there’s no chance that they would be able to do a tummy fat reconstruction, and even if I opted for a back-fat op, I would still need an implant as I’ve not got much spare flesh on my back either.
How are you two years on from the radiotherapy? Have you noticed any loss in lung capacity, any breathlessness. Right now, I can walk for miles – something I do to calm myself down – and it would be a catastrophe if life were to become even smaller. Already the lymphoedema has put restrictions on what I can and can’t do so to add lung damage to the mix would be the last straw I think.
Did you have a mastectomy?
Hi Stoic
I don’t know if this helps, but I had a mastectomy 18 months ago followed by rads. I’m very small too and the initial diagnosis was intermediate DCIS just behind the nipple so a WLE wasn’t really an option. I lost the nipple and a scar from a previous operation for a benign lump, and I now have a tissue expander as I have no fat elsewhere. I’m hoping to have my implant done in the next couple of months. The rads was a late change to the treatment plan because they found a small invasive tumour and more DCIS right against the chest wall and they hadn’t got a clear margin. My onc said lung damage was an potential problem but because I was a hill walker he’d do what he could to minimise the risk. I finished rads middle of August and at the end of October I went to Nepal and got to 4130m (Annapurna base camp). No problems with breathlessness but I did feel the tissue expander react to the low atmopspheric pressure. Weird to say the least! I think I probably do get more tired if I do short bursts of intensive activity, although I am 62 so I guess I’m allowed to slow down, but I can walk all day (15/16 miles) at a reasonably fast pace. Just been to the High Tatras. I know everyone is different, and maybe I’ve been lucky, but that’s how I got on.
Good luck with your decision.
Foxy
xxxxxx
Hi Stoic
Having read Foxy’s reply, I thought I’d add my experience as another hill walker - albeit very tame by comparison! I finished my rads in May 2011 and in August 2011 spent a week walking on Arran, averaging 12 miles a day and including doing Goat Fell in a respectable time. Since then I have walked pretty regularly and am due to do Ben Nevis for BCC in a few weeks time. I have had no breathing problems whatsoever, and my overall fitness is not too far off it was before treatment. I am now 49 so possibly somewhere between you and Foxy…?
When explaining the risks of rads to me, the radiologist mentioned the risk of lung damage (indeed, said some was almost inevitable) but added ‘but you have another perfectly good lung which is all you actually need.’ It seemed a bit glib, but I guess it’s true - lots of poeple live fulfilled, very active, lives with only one lung.
Hi Stoic,
You asked me about whether I had any problems with breathing post rads. Like Foxy and Revcat, I don’t and although I am nowhere near at the level of fitness now than pre-rads (nothing to do with the radiation treatment) I would not be too concerned about my breathing (at this point in my life). I have had a couple of chest infections since my first breast cancer treatment, but who knows if this is related or not? I also had rads to the right, and understand that this poses a risk to the heart and was also warned about slight damage to the lungs- both are apparently long term side-effects.
You might remember, my reconstruction to this breast failed when I subsequently had bilateral mastecomies in Feb 2012. This was due to to radiation treatment. So, I have had experience of ‘conservation’ and then having mastecomies, with implants, and then losing one breast when the healing problems meant the implant needed to be removed.
As a result of my experience, I feel that whereas everyone is pretty clear about the risks of chemo., radiotherapy is seen as ‘less risky’- most women complain of a bit of redness to the skin and fatigue. I certainly did not realise the significance of the longer term effects on healing. Having said this, I know I wanted to save my breast at the time, so even though I wad not given the choice, I think I probabaly would have opted to save my breast if I could. I know your situation is different and you are different. The other thing i have learned, is that its really very hard to manage ‘choice’ as like you I have been given responsibility for decisions that I have not felt equipped to make. Like you, I have had experience of things going wrong which, understandably, makes you much more wary about taking any risks.
I sounds like a tough decision. I found the BCC Helpline really helpful when in a similar position. Unlike friends and family, they have no interest in pushing us one way or another.
Good luck, Rattles x
thank you for your replies. Rattles, your post re the damage that radiation does to the skin was very informative, though what a pity you had to go through it. Like you, I want to keep my breast, which means I am (emotionally and perhaps irrationally) drawn to radiotherapy (due to start this thurs). I know that this road could lead to the best possible outcome (I keep my breast, my lung doesn’t suffer and the radiation kills whatever disease is in the breast) but also the worst – this thing in my breast does prove malignant, I have to have a mastectomy anyway, and any reconstruction is severely compromised by the radiotherapy. I’ve also got mild lymphoedema now so it’s likely that moving fat from my back to make the implant look more natural would be a bad idea since it would involve going right through the armpit. I’ve learnt the hard way that things don’t always work out well. In my soul, I’ve always thought that somehow things would be all right (even now I’m thinking it, with the radiotherapy) but the past seven years (since my partner died of complications arising from a brain haemorrhage) have taught me that often things just keep going wrong. And the past six months, from the botched surgery, to the nerve damage, to the lump that can’t be biopsied, and now to the lymphoedema have put me under the most enormous stress.
Hi Stoic,
I am so sorry you have had such a tough time. It really is not fair is it? The worst thing about this disease is that it nothing we do offers any certainty, and the ‘cure’ causes damage, so comes at a high price. If it helps, I think, there is an emotional component as well as a ‘factual basis’ for any decision. If the clinical data is uncertain, then all that we have is instinct and feelings to help us work out what we think is best for us.
I really would reccommend talking to someone from the BCC Line. I had a recent dilemma about my chemo and it really helped me to talk it through.
Thinking of you. Rattles
Hi there
I was just browsing for information about something else and came across your post. I saw a wonderful documentary on TV some months ago about inovative new treatments within the world of cancer. One of these involved the administration of radio therapy using a new machine called ‘cyberknife’. I apologise if you have already heard of this and explored it but I thought I would mention it anyway. The machine is vastly expensive and therefore there are not many in the UK. There is one definately at the cancer hospital in London. With normal RT treatment you get a high dosage of radio therapy directed at the cancer area in order to kill off any dodgy cells but the side effect is damage to healthy surrounding tissue etc as you know. With cyber knife you are given dozens of very low level zaps of RT which can be very precisely targeted. As a combination the effect on the cancer area is brilliant (more than normal RT) but the massive bonus is it radically cuts down on the damage to surrounding tissue because each of the zaps is very low level. I am pretty certain that at the moment the reason why we are not offered this treatment routinely is down to cost. It might be worth discussing this option with your GP/onncologist and doing some research as well. At the very least you should have a consultation with an onc that does this treatment to see if you are a suitable candidate.
Good Luck. And don’t be fobbed off!