Advice regarding radiotherapy

Sorry no one has replied, hope this gets you moved up to the front page and you get a reply.  Love from Ann

Hi Shaz52, I’m sorry to read this. I can only tell you what happened to me if it helps. Radiotherapy was not part of my original treatment plan. I had a masectomy with DIEP reconstruction on 14/12/2021.Surgery results showed that I had positive margins on my widest area of intermediate DCIS which was 5cm and contained two invasive tumours (one newly grown). MDT unanimous decision was that I had to have 15 days radiotherapy. In your case though, if I’ve read it right they still have the chance to get clear margins around the DCIS with your upcoming masectomy and if they achieve that RT should not be required at all. Good luck to you - hugs Mickey xx️ 

Thank you so much xx

Thank you so much for your reply. That has really helped me. I have an appointment with my breast consultant, it's being discussed next week, in mdt and then plastics mdt. So they can advise me if they  able to get clear margins or not. I did have some dcis removed with my breast lump. So they aware where my margins need to be from. Was you advised what the clear margins need to be in size  with moderate grade dcis. Many thanks for your help. Hugs Shaz xx

Hi Shaz, 

I’m really pleased it helped a bit. I’ve been wondering how you were doing and glad to hear you’ve almost finished chemo. 

Good luck next week, I’m hoping they’ll be confident that they can get clear margins for you and you won’t need two ops and radiotherapy as well. 

I was told that masectomy national guidelines are 2mm, but some surgeons/consultants are happy with 1mm. I think like most things it varies depending where you are and who your Consultant is. However in my case the Oncologist said it was ‘nowhere near, very very positive margins’ and it was unanimous MDT decision for Radiotherapy. When I pressed the surgeon she said less than half a mm, but I haven’t actually seen my results and  have applied for a copy of my pathology report. 

Hugs Mickey xx️

Hi MickeyM that so helpful. I was discussed yesterday in mdt and have an appointment booked to discuss there decision so this will really help me prepare my questions. Radiotherapy has never been mentioned in my care plan. My last chemo tomorrow so almost finished. My herceptin will continue. How did your diep surgery go. I am requesting to go on my plastic surgeons waiting list for a diep. She is an amazing surgeon, who had breast cancer over 15 years ago. How was the recovery pls. Best wishes xx

Morning Shaz, 

Firstly, I wanted to say that I hope your final chemo today goes as smoothly as possible - almost finished. Can’t imagine how that feels for you, but sending virtual hugs. 

I’m glad you know your case was heard at MDT on Wednesday. When is your meeting? Must be nice to know that you have such an experienced surgeon, who will totally Empathise with and understand the breast cancer rollercoaster.

How much longer do you have to have the herceptin? I’m hormone positive and only started my ten year prescription of Anastrozole a week ago.

I have to say I absolutely have no regrets about having the DIEP. I consider myself very lucky in the scheme of things as my recovery has been good. First few days are hard, but the nurses are fabulous and you are in charge of your own pain relief.  It’s the 30 minute initial obs of your breast that are so necessary, but so tiring. Allow yourself time to rest when you are discharged, you will need it. I’ve had no problems with my reconstructed breast at all. It’s getting softer now, ten weeks post op and it’s feeling more a part of me. I know everyone is different, but for me waking up and seeing I still had a cleavage made the masectomy a lot easier for me to deal with.  In terms of my tummy, it’s a long scar, hip to hip. It is definitely starting to fade now (bio oil once healed has been fabulous - but I’ve had to stop using it temporarily now due to upcoming RT). I had a little area that didn’t heal towards the centre and that leaked a bit of gunk and some tummy Seroma. Both were regularly checked and only took a few weeks to go away. Tummy is getting a little tighter again, I’m assuming that’s the healing process.  I can’t complain at all and I think ‘keeping moving’ is the key, along with trying to balance some rest and not overdoing it. 

I hope that helps Shaz and I’m always happy to share if you have any further queries. 

Hugs and all the best for today - Mickey xx️

Hi Shaz, 

Did you get any decisions about this and how are you?  

xx️

Hi, my surgery is on 20th April, masectomy with tissue expander. I am having radiotherapy because they think margins will be tight by my chest wall. They did remove some dcis from my first surgery and biopsy result from this showed it was intermediate grade and my invasive was also grade 2 and 20mm in size. After radiotherapy I am then going on my plastic surgeons waiting list for a diep. Radiotherapy consultant seemed quite positive and advised surgeon will not leave hardly any breast tissue after surgery and if there is any positive margin it will be small and radiotherapy will destroy any further cells. How are you doing now MickeyM. Best wishes xxx

Hi Shaz, 

Great news and I’m so pleased you have a date for surgery this month.  Did they say how long you  will have to wait for the delayed DIEP? 

My DCIS was mixed grade strangely. It’s got me wondering whether DCIS can re-grow if cells left behind? I’ve recently learnt from reading a letter sent to my GP that my positive masectomy margins were on the largest area of DCIS and both tumours. No-one explained that to me. Obviously I’m hoping the radiotherapy has killed them, but how we know after a masectomy is beyond me. 

I finished my RT this week. it’s a relief not to keep going to and fro to the hospital every day. I am generally ok. I used flamigel RT as I have very sensitive skin and it has (so far, fingers crosd) stopped any skin breakdown). I’m sore under my armpit, which is a bit of a pain as it’s stopping me doing stuff (like getting dressed ). Otherwise I’m just tired and skin looks like a tan line with a rash under armpit and spread a bit at top of breast, but breast is not sore. They say the skin takes two weeks to peak after RT, but it doesn’t seem to be getting any worse since I stopped.   In respect of my DIEP reconstruction there are no changes so far. I’m aware though that some people get none and others have some hardening and shrinkage, these are late effects though.  To be honest, although I wasn’t expecting RT, I am now pleased that other than the AIs this is now the end of this treatment plan. 

The expander seems like a good option to avoid any potential late effects of RT that could transpire  if you’d had an immediate DIEP like me. 

let me know how you get on Shaz and good luck for the surgery. I would say that was the easiest part once you get your head the masectomy (not sure I have yet). 

Virtual hugs Mickey xx️