I am rather worried that it has been suggested that I have rads on my recon side since they have found a small tumour that was left over from my Mx last year.I had an immediate recon as rads were not indicated.But following a WLE on my recon ,they are talking about rads.I have heard they cause damage to the implant.I really want to do my research and get this right!
Anyone got any advice/stories?
Love
Dot
x
Anyone had rads with an implant???
Dot
x
Hi Dot
Whilst you wait for the other users to reply with their support and experiences you may find it helpful to discuss this with one of the BCC trained members of staff on the helpline. They will be able to offer you support and information with regard to your questions.
The number to call is 0808 8006000 and the lines are open Monday to Friday 9am to 5pm and Saturday 9am to 2pm.
I hope this helpful.
Kind regards Sam (BCC Facilitator)
Hello
Yes, rads are very damaging and you could well end up with capsular contraction which is very uncomfortable and painful.
Your BCN should advise and you can Google for more info but I expect you’ll get other experiences on here.
Reg.
Hi Everyone,
I had a mx and immediate recon with LD flap and implant in May. Having initially said rads were not necessary, breast surgeon and oncologist are now telling me I do need rads to help prevent local reoccourrence, even though the reduction to the risk of reoccourrence will be small. PS says damage to recon is inevitable, 30% chance of needing corrective surgery within 5 years, 100% chance of needing corrective surgery at some later date.
Finding this a difficult decision: of course, any steps to reduce the risk of reoccourrence are important, but the benefits are small and the inevitable damage to the recon (which I really don’t want to mess up) is really upsetting.
In the centre where I am being treated there seems to be a move towards offering more immediate recons, and dealing with cap. contract. as and when it happens. How bad is having an implant relaced? Can you hope for a good cosmetic result? Any thoughts?
Hi Dot,
As I should have said in my previous message, my question is really the same as yours. Sorry I don’t have any answers!
I spoke to one of the bcc bcn and found her really supportive.
Have you managed to find out anything helpful about rads on ld recons?
Good luck with your treatment.
Sue29
Hi - I had immediate reconstruction with tissue expander in 2 years ago . Had chemo and 25 rads. All the time my reconstruction was very uncomfortable and tight (still is a bit). In May I had the tissue expander taken out and an implant put in plus the “dog ear” removed from my back.
The surgeon did mention capsulitis and I am hoping that eventually things will settle and I won’t be uncomfie.
So I suppose the answer is yes - you can have rads and if capsulitis does occur they will be able to replace the implant.
Liz x
Thanks Sue and Lizzie,
I got my path results today and now have an appt to see Onc re rads on Thursday.The Dr (my consultants registrar)) gave no real reassurance about my implant.But basically after speaking to my BCN ,if it does cause a problem they can replace the implant.Its a real thought to face more surgery but I guess if I need rads then I better have them!
I will let you know what the onc says,
Love
Dot
x
Hi Dot,
I feel the same about more surgery: one of my reasons for having immediate recon was to get all the surgery done at once. But at least you know your implant can be replaced so things can be put right if necessary. And, as you say, if you need the rads, you’d best have them.
Good luck seeing your onc on Thursday. I’m seeing mine on Friday so maybe we should compare notes!
Love
Sue
Hi Sue,
Another poster has posted a link which is interesting on the Edinburgh thread.
cancerbackup.org.uk/Treatments/Surgery/Breastreconstruction/Radiotherapy
It seems there is a specialised form of rads that can be used!
Don’t know if they do it everywhere though.
Having an implant replaced is nowhere near as bad as our original surgery, but its still a terrible thought and how long do we have to suffer before it gets done.
I am so upset as this situation has only happened because they missed a tumour at my original op!
I will let you know what the Onc says tomorrow.We can compare notes.
Love
Dot
x
Hi Dot,
Thank you for passing on that link; it certainly gives me something to ask my onc about on Friday. Lets hope this specialised rad is available to us both.
It must be so upsetting to feel rads on your recon could have been avoided if they hadn’t missed the tumour. Did you have chemo when you were first diagnosed?
The risk of cap. contract. feels to me like yet another source of stress,uncertainty and upset. Having gone through major surgery wouldn’t it be good to feel it is one aspect of the treatment which is finished with.
Good luck with your appointment if you read this before you go.
Love
Sue
Hello
Missed a tumour?? MISSED A TUMOUR???
Isn’t that incompetence, negligence and a lack of duty of care?
Sorry, surgeons do not just miss tunmours - something has gone wrong here, very wrong.
D
Hi dahlia,
Yes it is negligence and I have many questions I need answering and I am still deciding what to do.
At biospy in July 2008 ,I had 3 lumps 15mm 5mm and 4mm. After my Mx my results were 13mm,5mm and “just a few cells”.None of my team thought this odd so neither did I.They feel now that this lump is the 4mm one from before!
I got no imaging on my recon side at annual check up July 2009.I asked for an MRI (as that was how they discovered no3 last time).So here I am facing rads and going onto half pay!
Two things need changing,
1 They need to highlight any discrepancies between Biopsy and path results.then investigate further with more imaging or reviewing imaging and path results to explain the differences.
2 They need to provide some sort of imaging at check up on reconstructed breasts.
I have an appt with my consultant next month (he is on holiday!) and will need all my questions answered.
Sue, I found an article yesterday that says there are no Photon Beam Rads centres in the UK. Bu**er!!! I don’t know about Electron ones ,I will ask this afternoon!
Love
Dot
xxx
Well,I am starting rads in 3-4 weeks. 25 fractions over 5 weeks as they hope this will lessen the effect on my implant.The Onc said that sometime the concern is with a new recon that the new transplanted blood supply can be damaged but as mine is year old ,this is less likely.
I need rads so I just have to keep my fingers crossed that there is no damage as I am really pleased with my recon the way it is! The onc even said it was a very good recon.
There are no photon whatsit centres in the UK!
Good luck Sue,
Dot
xx
Dot that sounds a bit more reassuring but what happens if your implant does get damaged can they redo your recon?
Lxx
Hi Dot,
Glad to hear your onc is taking steps to protect your recon and that, having been in place for a year, yours should cope well.
I fell apart in my appointment with my onc today. In my case, rads are recommended to help prevent reoccurrence: they will lower the risk by about 7%. I realise I must sound completely mad to anyone who has had a reoccurrence or secondary cancer. Why on earth would I feel upset about treatment to help protect me, no matter how small the amount of protection, against it coming back? But, knowing that rads will damage my recon (and mine is only 3 months old) makes me feel as if I’m loosing my breast again. The onc said I am entering the ‘reflective’ stage, where the enormity of the whole experience is hitting me and that I should make a decision about rads and stick to it. My GP has helped me to arrange a second opinion because, whatever stage I’m in, I really struggling.
What a pain that photon (or is it proton?!!)beam rad is not available. Are you feeling ok about the prospect of the treatment now? Clearly, you need answers to your questions but hopefully you can focus fully on getting rid of that tumour.
Love and best wishes,
Sue
I have been told that they will deal with any damage caused.But its such a thought to face more surgery and all the waiting too.
Sue,when they first mentioned rads I thought “I don’t need them and I won’t have them” But on reflection I realised that I couldn’t live with myself if the BC came back and I hadn’t taken everything offered.
To put it bluntly, I decided alive with a wonky boob is better than dead with two decent boobs!
You need to come to your own decision, ask lots of questions but do consider how precious your life is.
Love n hugs
Dot
x
Hi Dot,
Thank you for your wise words and kind support about the prospect of rads. I seem to be stuck in the ‘don’t need them and won’t have them’ stage. Hopefully I will soon follow you into a calmer and more rational way of thinking.
I so agree with you about how I would feel if I turn down the treatment and the cancer returns. I imagine telling my kids it’s back - how awful would that be! Thank you for putting it bluntly - it really makes sense.
I too dread the idea of more surgery and the waiting. The ps told me the effect of rads can take years to become a problem so it is like a time bomb- you know it will become a problem at some stage, you just don’t know when. So we have to enjoy what we’ve got while it is good and try to not worry about when it will need to be put right. Not such a bad philosophy for us girls, I suppose.
Lots of love to you,
Sue