Hi, I'm struggling to find anyone who has had radiotherapy after a Masectomy with DIEP Reconstruction. I'm keen to understand how this may impact my reconstructed boob.
I was diagnosed with ILC in left breast with tumour in lymph node - in 2016 I had both breasts removed and was given diep flap reconstruction, followed by lymph node dissection. Follow up treatment was chemo and radiotherapy. I was determined to have the radiotherapy, even though the benefit for me was small and there was a possibility of damaging tissue, as I wanted to give myself the best possible chance of beating the disease. The result is the tissue is slightly firmer on that side than the other but nothing troublesome. hope this helps
Thank you so so much for reading my post and taking the time and trouble to respond. I don't know yet where the radiotherapy will be aimed at in my breast yet. The firmer side being where the radiotherapy was aimed, I assume. Can I ask how many sessions or minutes you had if you can recall?
I'm sorry to hear you had to go through so much treatment. I wasn't expecting radiotherapy, but I do know I have to do it now. How are you doing now ?
Hopefully you feel more positive by Belliboos' account of her own experience. Do bear in mind though, that everyone will have their own experience and yours may well be different. Hopefully, you will also be able to have a good and frank discussion with your own breast care nurse as to what to expect and to discuss all the potential possibilities as to how your breast may be affected.
Sometimes you won't necessarily see any immediate changes to the breast after radiotherapy, but over the years there may be hardening, discolouration or shrinkage. This won't happen to everyone , but it's important to know that these are possibilities.
The Breast Cancer Now website may also be able to put you in touch with some people who have also had the radiotherapy after a Diep on their Someone Like Me service here
Thank you so much Wanda for your informed response. I'd much rather know what to look out for as possibilities despite knowing that, as you say, all of our experiences are different.
I have heard of that service and so I will now explore that too. Thank you again.
I had 15 sessions of radiotherapy, it's not easy when you don't know what to expect but all I can say is try to be as positive as you can and have faith in the professionals. I used a cream called QV as a moisturiser which helped after each session.
Glad to have been able to give you some insight into how it went for me, I hope it goes well for you . The treatment will have advanced since I had mine 5 years ago.
I still have yearly checks as I am taking Letrozole for 10 years but I am doing very well at the moment . I know it can be scary and dibilitating at times ,especially during the early weeks and starting new treatment plans. I have never written on these type of forums before but I felt you were a bit caught in the headlights and although we are all unique and no two cancers or treatments will be the same, when faced with it without in-depth knowledge or understanding it can be confusing. I am sure if you grit your teeth ,dig deep inside you will find the strength to face this full on and come through the other side. Remember to take one day at a time and be kind to yourself ️
Thank you so much, I feel truly grateful that you've come onto the forum to support me. I had a look at the 'someone like me' forum recommended, but there was no-one like me .
I've been trying to take a one appointment at a time approach and it works well for me. I do like to have an idea of what to expect next though, even though this journey is full of unexpected twists and turns. I promise to grit my teeth and dig deep.
Today is my f2f results appointment, but I know I won't really know much more until I get my radiotherapy planning appointment.
Can I ask how you are finding the letrozole? I know we're all different, but I am anticipating that letrozole will be the hormone therapy that that prescribe for me also for ten years.
Have a great day and thank you again. I'll look into that QV cream also.
how did your appointment go today ? I hope it was okay.
I have had and still suffer some of the side effects of letrozole but the way I look at it, it's helping keeping any recurrence at bay for me so I have tried to manage the symptoms ( hot flushes, joint pain, weight gain) I know of others who have stopped it because they couldn't cope - it's really down to the individual but like you say we are all different. I would definitely give it a go if that's what's offered as you can take other medications to lessen the symptoms.
Thanks for the response again. I will definitely try the hormone therapy, I understand it's unlikely to start until after the radiotherapy is completed.
So in essence yesterday they confirmed that I had positive margins in the masectomy and cancer cells were found at the edge(s) of my tissue. They can't complete a further surgery because of the reconstruction and told me it's unlikely that would have been successful anyway. Hence the unanimous decision at MDT for Radiotherapy. 15 sessions recommended and I'm told Oncologist may want booster sessions around the margins.
Have you taken other medication to help with the side effects of the letrozole? I was told yesterday that they will leave me for four months at least before they would even look at other medications ♀️.
i just finished radiotherapy on my left boob after double mastectomy with diep recon. So I have two reconstructed boobs and only one has had radiotherapy. So far I can't tell much difference, though apparently that can change months or even years later... the left is maybe a little more dense feeling than the right but I don't think I'd notice if I wasn't looking for it... treatment wise it got a bit stingy with nerve twinges towards the end of the course but I didn't have any dry/ broken/ sore skin problems. I was obsessive about slathering on the e45 but I don't know how much of a difference it made tbh
Must say, it's not mine either . Thank you so much for taking the time to reply to my post. Really appreciated.
Do you mind me asking why one side and not the other? Also how many sessions did you have and how often did you slather the E45 during and will you continue now you've finished.
I'm really pleased to hear that your skin didn't break or get too sore. Hoping it heais for you quickly.
