I posted the below on the surgery section but thought it would probably be more relevant to this section. Any replies gratefully received. x
Following my mastectomy on 31st October, I get my results this Thursday. I am triple positve and was given chemotherapy before surgery. This completely resolved my 5cm invasive tumour ( they could see 2-3mm of what they thought was scar tissue on the last scan). However due to the 9cm of dcis, mastectomy was the only option. I have been given differing opinions about the need for radiotherapy from three different breast cancer surgeons about the need for post operative radiotherapy. However I actually want it because I have checked the uk guidelines and I do fall into the category of needing it- see below- and I consented to mastectomy with delayed reconstruction because of the need for radiotherapy after surgery.
I am driving myself crazy , researching papers on the likelihood of cancer free lymph nodes from the SNB ( the three ultrasounds showed no evidence of cancer in the nodes and the initial fine needle aspiration was negative too).
In the literature it states the risk of recurrence is higher if the tumour is 5cm or more, hence the need for radiotherapy. Is this the case if I have had the mastectomy though? Where would it come back? Does it mean recurrence in the same breast ( in residual breast tissue?). Would it be the same type ( triple positive)? I will have herceptin til next June, every three weeks, and medication too.
Also, the guidelines state that radiotherapy should start within 31 days ( in England). Is that likely? One of the surgeons said it would be ten weeks. I know I have to wait for healing, but I have had no post-operative complications, I have really good arm movements, little pain etc. ( Interestingly, on a different post, a lady was concerned about removing her dressings. I was told to remove my dressing after three days. I wasn’t given drains. No-one has telephoned to check if the wound is looking alright. I just got a phonecall the day after surgery, when I had the dressing in place, and I told the nurse I was really traumatised and felt mutilated, and I couldn’t bear to look at it. Luckily I am coming to terms with it now).
Sorry about the long post. I welcome any comments/ advice.
I met a woman at my radiotherapy sessions that had been through a mastectomy. It is unusual to have rads after a mastectomy but she said they told her that the site of her cancer was the reason. She had it far back in her breast so growing into the wall of the chest if you get what I mean. Mine was the total opposite and was only growing on my nipple - I had Paget’s disease.
Perhaps yours was far back and was near tissue not easily removed. But rads are nothing to worry about, you just have to go every day for weeks is the worst of it. You might get a bit of redness but it is painless.
Hi, I had pagers disease in 2006 and had surgery and radiotherapy. This year I had lobular cancer and have had a mastectomy, a second surgery for the node clearance and shave of the chest wall due to the size of the tumour 11.5 cms , chemo and now, 8 months after surgery it’s been decided I’m to have radiotherapy too after i was initially told it wasn’t possible to have it twice. This time it’s going to be near the collar bone because of affected lymph nodes. .
Hi Jane, 1st time it was a doddle so I’m hoping it will be again. I ended up with just slight sunburn type burn which I put loads of Acqueuos cream on. Last time was to the breast itself which is now gone so this time is more to the collarbone area which won’t require me to keep my dodge arm up so that’s good. Only drawback was is that I was hoping to have it at St Thomas’ in London where I had it before because I work a two minute walk around the corner but they don’t do it there any more so I’ll have to traipse over to Guys every day.
Good to hear you have your start date for your radiotherapy, I hope it all goes well for you. I started my treatment last Tuesday so will be half way through tomorrow. So far the effects haven’t been too bad, though the travelling might be tiring for you. My treatments are early morning, so I’m getting tired for a different reason.
The basic recommendadtions to avoid too many side effects are to drink lots - keep hydrated, and use cream regularly. I’m creaming 2 - 3 times a day (don’t forget your back) and using E45.
The radiographers I see said they don’t make any recommendations on what cream to use, and when asked, they said to use the cream at least 30 - 60 minutes before the treatment, but I think that advice varies from hospital to hospital.
Good luck, and focus on the end of January, when it will be all over and you’ll be ready for your “Moving Forward” course. x
Biafine contains paraffin and I read not to use moisturiser with paraffin in it so is this ok to use? I got some but thought maybe best to check tomorrow when I have my first radiotherapy appointment.
Thanks Jane. I will let you know what they say. They did say aqeous cream is ok but that contains paraffin too and I read only use it as a shower gel. Mmm. Not used it yet just in case but will put on after if ok. x