Hi All,
Not been on the forum for quite a while, bit of history…
Diagnosed May’15 aged 48, finished FEC-T Sept 15, Mammoplasty Oct 15…clear margins and neg nodes. Grade & Stage 2 IDC 47mm + DCIS 2mm, HER & ER+.
Subsequent necrotic wound… 7 ops later.
Nightmare 7 months wound recovery and been off work for over a year. Was hoping to return to work August after having ‘enforced’ Career Break.
My wound very superficial now but keeps breaking down a little on friable scar area - had 10x6x5 necrotic flap, so sizeable area to mid/sternal area of breast. Also open wound to whole inframammory fold for 5 months…again approx 1cm scar full length.
Developed lots of allergies to adhesive/film dressings so limited range of these can be used, and some sutures.
My dilema…was always to have 15 Rads as part of my treatment plan as had BCS & IDC. Now due to start these 3/6/16…8 months post op.
Im absolutely terrified that it will cause my wounds to breakdown again…they are still not fully healed but Rads Onco is confident he can start next week. He’s been great and have had several chats re Pros/Cons…he cannot give me % benefits as studies done are 30+yrs old…he best guestimated as i understood it that 6-10% benefit against recurrence if have Rads V 15% risk recurrence if don’t. He cannot say what effects delay have had either as no real facts available re that either.
My minds doing overtime, i can’t stop thinking/worrying about it,im so emotional…weeping alot, … its all ive thought about for weeks.
One hand i never want to host this #@*! again, but i also cannot endure more wound issues at the mo.
If recurs id have mastectomy…but who’s to say i wouldnt have same wound healing problems then.
My breast is scarred and mishapen…any aesthetic effects of BCS are well gone so im not worried re change in shape but i think my risk of Lymphoedema may be higher due to all scarring…
Aaaaaaggghhh…i could go on. I need to make right decision but which???
So sorry for the ramble, i needed to blurt.
Jo
Jo, you poor love! What a god awful tale you have to tell. No wonder you are feeling a little tearful after all that. So pleased it’s finally healing for you. I am not at all surprised you are thinking of refusing rads. The trouble is, it really plays on your mind, when you’re not doing 100% of what they recommend diesn’t it? I recently had to stop tamoxifen because if hair loss, but it made me much more worried about recurrence than I was when I thought I was giving it 100%. Most of us seemed OK fir the first 7-10 days. Could you compromise & have a week, then a month off another week etc? I’m not a radio therapist, so I have no idea if that would even work, but might be better than nothing. I certainly would be really concerned about the wound breaking down so sound after it’s healed. I really feel for you. Even the docs don’t really know what will happen. I know your guy is keen to proceed, but he’s not the one who will have to live through another 6 months of hell if it breaks down again. Good luck with everything. Sorry about the typos it won’t let me go back & correct them any more for some reason, but hopefully you’ll get the gist. xxx
Thanks for reply Bibi…
It’s never easy for any of us at times hey…ive restarted Tamoxifen after having it stopped for 5 months…thrombotic effects and its role in delayed wound healing…also started Herceptin too - had 8 now but only 2 more can be given as finite 12mth period will be up soon…so dealing with flash flushes etc again, its great init!!
Think going to have Rads and see how it goes…any signs of major problems and i’ll stop…think i’d never forgive myself if hadn’t tried and recurrence happened. Ive had wound 8months…whats a few more ?. Also i’ll ask to have reviews more often than usually do on my skin. It may be foolish of me to do this but id rather have a wound than a recurrence in the long run.
Take care…x
Wow, Jo, that’s complicated isn’t it…I can see why you are worrying and uncertain. I’ve not been in your position, with issues of wound healing…but I have a family member who has necrotic ulcers and they are devilishly difficult to deal with and get to begin the healing process. I was wondering, when you talked to the doc. Did they say they would monitor and perhaps stop the radiotherapy if there was evidence of tissue breakdown?
c x
Sorry, I wrote this just reading your original post and didn’t see the further ones from Bibi and your reply. I can see that you are now considering going ahead with RT, I think that would be my choice also…as I believe they can monitor your wound and skin daily.
Hey Jo
I’ve decided not to have radiotherapy, my story is that I was diagnosed with stage 3 DC breast cancer last August. Had FEC and then taxol chemo over 6 months, plus 5 cycles of perjeta, am also on Herceptin 3 weekly as I am HEr2+. I then had a MX with ANC 6 weeks ago. I had 2 breast tumours plus two masses of postive cells and 3-4 nodes affected. Towards the end of chemo I had an MRI which found zero cancer anywhere, but my surgeon and onc said well you still need the MX as frankly there will be some cells in there still that the scan cannot see.
My histology came back 100% free of cancer. So they have told me I am now NED (no evidence of disease). My need for radiotherapy was based on initial diagnosis, but to be totally rid (allegedly) before the end of chemo is rare in a case like mine, so they said rads only for belts and braces but if I didn’t want to proceed then they would support this as they have no evidence to suggest I actually need it.
It will affect my reconstruction opportunities as I’d not be able to have an implant but have to go with a DIEP or TRAM flap from stomach or back which I don’t want to do. Personal choice to be honest. But key in this is that they have no basis to suggest I need radiotherapy and all through the treatment I’ve had every side effect possible and been quite sick. My heart is already suffering with herceptin so the likelihood of it affecting me is high.
I don’t know if this helps at all but this is my rationale, and I’ve thought it through at length and my surgeon said he wouldn’t if he was me and so did the BCN, both I hasten to add said this after I’d made my decision so they did not attempt to sway me before hand.
Mx
Sorry - meant to say I think you have to do what is ri ght for you and don’t do it out of fear as I had my MX based on the couldn’t live with the worry, when it turns out it was a healthy breast. I don’t regret that for a minute as I seriously could not live not knowing, but I do now know that rads are not for me and side effects as you say are a huge issue for you and me. Take your time and don’t be rushed. You’ll make the right decision
x