Hiya , my wife is at the radiotherapy section of her treatment. Mastectomy in June,clear lymph nodes,chemo ended 2 weeks ago. She is due to be" measured up" on Wednesday for radiotherapy after being told by the oncologist at the start that she would not require radiotherapy.
It seems that he changed his mind because of the size of the tumour (that has been removed ??) I was a bit taken aback by his unsureness (??) and he finally got off the fence and said that he was not sure whether radiotherapy would benifit but it would be wise to have the 3 week treatment which will end on Christmas Eve.
To make matters worse,we have just read a full page report in todays daily mail about the side effects ,short & long term of radiotherapy. We are very confused to say the least.
It is so difficult to get conflicting advice from these oncologists - they really are a “law unto themselves”. They all seem to have totally different ideas about chemo (and which drugs to give) and the radiotherapy, whether you need it or not and if you do how many sessions to give.I thought most people who have a mastectomy didn’t need to have radiotherapy as well, but I’m no expert. I didn’t have chemo but did have 25 sessions of rads after a lumpectomy, and I didn’t have any real problems or much in the way of side effects. I used Emu Oil to keep my skin supple and didn’t have any real tiredness and drove myself every day for 20 miles and continued to work part time! I thought I might have some problems as I am 64, much older than many women on this site, but I was fine.
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Best wishes
Lucy
When I put our oncologist on the spot,he told us if 100 oncologists looked at Sues case history,53 would say have the treatment and 47 would say no !! He also told us that there is a chance of the lungs and heart being damaged which makes me think radiotherapy is a bad idea. I guess we will be asking a few questions later today.
Thanks for the info and tips Redders and for the link Lucy.
Blimey…! I think we should all give up now and refuse all treatment of any kind. The treatments are surely as dangerous as the disease - certainly with some horrendous side effects. I didn’t have any problems with rads, but I know some people do. Surely there should be more research into which treatments affect which people more severely and they should be targetted as such. For example some chemo drugs have much worse effects on some people and not on others, and some don’t work at all on some people - why not??? Who is researching into this? No one I suspect because it won’t make the drug companies any money.
After discussion with our clinical team, I have deleted the post referring to Don Benjamin and radiotherapy. This is because this information is not referenced, so we do not know that it is reliable and it does not refer to breast cancer specifically. We felt that it would just confuse people and we will post more detail on radiotherapy shortly.
Here are two links from our site and the cancer backup site giving information specifically about the use of radiotherapy in early (primary) breast cancer. We know from clinical trials that having a lumpectomy followed by radiotherapy gives the same statistical outcome as having a mastectomy in reducing the risk of a local recurrence.
We hope this helps clarify things, but for individual assessment it is important that you talk to your medical team.
They say that too much knowledge is dangerous, I’m thankful that Sue is a bit of a luddite when it comes to computers/internet. Sue is being guided by her breast care team and is happy to go along with their advise,which is something we all would do. So far i have felt comfortable with the treatment she has had BUT there is something about radiotherapy that concerns me. Suspect I will just have to put it to the back of my mind,at the end of the day it will be Sue’s decision.
Just back. Sue has been measured up,got her cream and her gown and is now waiting for the call. I spoke to one of the Tact 2 nurses who was passing while Sue was being seen to. She told me that it was best to do as advised and that Sue would be “just fine”. Because she is one of my “favourite” BC Nurses, I felt much better. Just shows how easily pleased we men are !!! I think my doubts will return though . Anyway,Sue has decided to have the treatment.
I will be starting a “Radiotherapy Diary” on here similar to my “Tact 2 Arm 4” diary that I had on the Undergoing Chemotherapy Forum. Hope it helps somebody.
Hi John and Sue,
in 1999 when first diagnosed I did not have chemo just radio therapy for 3 weeks, it was fine didnt make me too tired no burns. So good luck with it. I always had a feeling that I should have had chemo but I will never know for sure, I so regret not asking them and being more forthright. Think that is why I ask loads of questions now.
Love Debsxxx
I too had my rads planning session on Wednesday and was a bit concerned about the long term effects. They did put my mind at rest and I suppose we just have to be guided by them as to what is the best treatment.
I won’t start rads until 2nd Jan so will be interested to see how Sue gets on.
I too am about to have 12 sessions of rads starting in January. Was originally told 15 in June. So do not know why change. Anyway I too have had a mastectomy and all nodes removed as found in six. Originally again I was told no need to have rads to armpit if nodes removed. Now told differently. I also saw the article in the Mail and am of course naturally worried coupled with the fact that the onc said I had an increased chance of lymphodema. the moment you are diagnosed is a constant worry. How do we know what the long term side effects of chemo are assuming we live that long. The whole thing seems unknown with no guarantees given. Now I am nearing the end people (ie those who do not have cancer) say what tests are going to do to see if it has worked. I think the answer is none. Just wait and see as far as I can see.
Some of you get cream prior to rads and a gown to wear. i have had neither. when i go for rads i get undressed and am given a paper towel to cover myself with. when they draw on me they fold the bit of paper down and then cover me with it when they leave the room to zap me. why do some get cream and others don’t?
i can understand that it might due to where you are treated but you would think that all cancer patients reguardless of where you live or are treated the treatment would be the same for everyone.
Unfortunately the treatment for breast cancer is NEVER the same in the same county let alone over the whole country! Every hospital “does its own thing” guided by senior oncologists and surgeons and they all have totally different ideas about which chemos, how many rads sessions, types of surgery etc etc… I realise every patient is different, but when I asked how an onc decides on which chemo to use I was told "well it’s a sort of North/South divide and the ones up north don’t like the drugs we use down here!! Obviously the very best reason for choosing them!!
I completely agree that there should be a gold standard of treatment that is applied regardless of where you live.