This has been playing on my mind for a while and I asked consultant and he said because I was having a mastectomy I didn’t need radiotherapy but everyone else with similar cancer seems to be having both.
When they did the WLE they found IDC of 22mm Grade 3 and one lymph node involved but after mastectomy and immediate LD recon they said there was significant DCIS as well - and I am worried.
Sound like a spoilt kid who wants what everyone else is having - but can’t help thinking I want everything thrown at it - can anyone throw any light on why I’m not getting rads.
I can understand your concern, I had everything thrown at my cancer including rads but that was after a lumpectomy. I have since had a mastectomy but will not have further rads to the area.
I think you should contact the helpline on this site to get some advice. They may give you some insight, I think phoning your BC nurse will help too. She will advise according to the hospitals policy but it should be within your rights to ask for a further appointment with a consultant, you can in Nottingham.
Don’t sit on this worry, there is probably a good reason but you need it explaining better and challenge the thinking. Its your body going through this.
Hi Lenise - I think if your surgeon is confident all surgery was a success and there were clear margins because you had a mastecomy rads aren’t needed. I think rads are only needed after mastectomy if cancer was near the chest wall? Don’t take this as gospel though - only my interpretation! The only thing you may need to ask about is if your armpit will have rads as one node was involoved. If I remember rightly you have had LD recon? If so I don’t think they like to do rads as it can damage recon - if in any doubt ask, ask and ask again!! I sometimes feel like I ask too many questions but it’s our body and we need to know.
You’re not missing out on anything. I too had mastectomy and no rads. The reason is that unless cnacer cells are found near the chest wall, it is presumed all removed by the mastectomy. Although extensive dcis was found, it has been removed. It merely reinforces that a mastectomy was the right decision.
Lumpectomy is always followed by rads, but with mastectomy it is only done when there is at least 4 nodes involved. This is because rads brings with it the risk of lymphodema and other risks and it is thought that unless there are 4 nodes involved, the risks out weigh the survival benefit.
I had all your insecurities about not getting what everyone gets but like you I have recon with implant and so therefore I am happy to not be having rads as it does cause damage to the implant. Anyway, rads can only be performed once in an area, so should you be unfortunate enough to get a recurrence, you still have that in your arsenal.
Hi Lenise…
I had the same questions some time ago. I had a mastectomy, tumor was about 2 cm (don’t remember exactly!!! wow), one lymph node and the rest all clear. I am finishing in December the chemo, and doctors have decided I don’t need rads. My cancer was hidden in the back of the breast, so my oncologist reviewed my case with the local bith hospital boss to take the decision, in the end I am comfortable they are doing the best.
Why? rads seem to be good to kill in situ cancer cells left over… so that means the surgery was good, margins clear, and they think all the crap is out of my body. Also, guidelines say rads are required in case of lumpectomy, or in case of mastectomy with more of 4 lymph nodes involved… otherwise, the risks related to the rads outweight possible benefits (heart failure, due to the area irradiated). I am quite happy with avoiding it, because it destroy skin and it delays by one year at least all reconstruction… and even then, recon with implants is usually not possible.
Following this thread has given me more food for thought - perhaps the delay in diagnosis from pathology on the DCIS I had is because they don’t want to give me radiotherapy even though my surgeon said it was the next step. Watch this space!
Maddy xxx
Many thanks for all your info. It has put my mind at ease - off for my oncology app. today so I will find out when chemo starts - oh the joys. Good luck to you all - my consultant and breast nurse are fantastic but this site provides a great backup service and talking to people who know what your going through is so important.
Jules - I like the thought of still having rads up my sleeve if I need it - thanks.
Mm - stranger and strangerer (!*) - just had a phone call from the oncology department - they’ve mysteriously managed to conjur up an appointment for November 1st - now that’s what I call service ! - It was only yesterday that I was told there was no mention of an appointment!
Maddy xxx
Happy Hallowe’en !
Surprise, surprise - today I received the letter from the hospital telling me about my appointment tomorrow - posted on 29th - so why did I have a conversation yesterday (30th) with a lady who said it hadn’t been posted yet? Deja vu? or something scarier…
Maddy xxxxxx