31-08-2018 03:01 PM
Hi folks thanks for your replies
I think I will proceed with the 15 cycles of radiotherapy to the breast tumour site but not risk the radiotherapy to the armpit-ths is mailnly to do with this POSNOC trial which half patients would get armpit radiotherapy and half not-this is apparantly standard practice in America where they consider armpit r/t to be unnecessary
Wishing you all the very best in your journeys
31-08-2018 02:23 PM
31-08-2018 12:39 PM
Suggest your personal history that should help shape your decision - age, smoking, overall health understanding how you might fit within meta data of research. I have only taken antibiotics once in my life - so my starting point is no intervention is the best intervention. I believe I am in the lowest risk group of any cancer research outcome.
While I am er8 pr8, I never took hormones such as birth control pills or HRT. Hormones are important for many ageing issues so I choose not to consider Hormone therapy knowing it would compromise bone health.
We need research data to be more disaggregated and individualized so better treatment effectiveness.
29-08-2018 05:28 PM
Many thanks for your most helpfull reply!
I am sorry to hear your story-I cannot believe how many people are being diagnosed with this dreadful disease!
I need a chat with the radiologist as it seems a personal choice and as you say we are so active in our own treatments that over treating cannot be ruled out
Wishing you all the best
29-08-2018 04:01 PM
Hi, I don't know if this helps, but I'll give you my take on the situation re: radiotherapy.
I found the Lump in March, and also aware of a small lump in armpit at the same time, and long story cut short, in May I had surgery - WLE and axillary node clearance, Grade 3 Invasive Ductal, with some DCIS 'admixed', ER8, eleven nodes removed and one node showed positive, my margins were not great . . .
Chemo was suggested - both before and after - and I was adamant that I would not have chemo. (Purely personal decision, I have never 'agreed' with chemo as a treatment, before, during, or after this was all going on - for me, but i have every respect and admiration for those who do have chemo). So 'the deal' was that WLE went hand in hand with the radiotherapy - particularly so for me because my margins were minimal ( no more tissue to take ) and the 1 lymph node issue. And it really was 'a deal' because I knew that without the R/T I was really taking further risks (after refusing chemo). I regarded the R/T as necessary for, hopefully, 'mopping up'. ( The oncologist thought I was wrong to refuse chemo, I know ).
I had 20 zaps - the 15 standard treatment, and the 5 boosters to the area where Lump was. I didn't have it directed underarm because I'd had the clearance.
I don't know if any of that helps? I'm also (reluctantly) on Letrozole, been taking for about 2 months now - I am not sure if it is giving me many side effects yet, as I am prone to aches and pains at my age (63) - and I am keeping an eye on my weight as I spent 2 years getting it where I felt comfortable before all this kicked off.
I guess this is the price we pay these days for being 'active' in our own treatments, whereas years ago, people were possibly more inclined to do 'as advised and prescribed because doctor knows best'. it's a know win sometimes isn't it - and never easy. When my surgeon discussed my results with me, I think he gauged the sort of person I was, explaining that because of the very narrow margins, almost non-existent on one side, with no further tissue available to take, that there was the possibility This could return in the area of the Lump. I had refused chemo, and he was being honest, and making clear why R/T really was, in his opinion, necessary.
I wish you all the best x
29-08-2018 03:34 PM
Thanks for replying-sorry to hear about your diagnosis
I think that if they are prepared to risk 50% of womens health on the POSNOC trial which excludes them from radiotherapy then that makes a good arguement to avoid it! I am not taking the trial as you are not able to choose which group you end up in and I haven't decided if radiotherapy is for me.
A friend of mine had the armpit radiotherapy and has been left with lymphodema-which is incurable
Wish I knew what to do-so confused!!!!
29-08-2018 01:40 PM
Hi @Gazza -
Am grade II er+ Her- and 1 node with Micrometastases (positive means more than 10%). Tumour 16 mm.
The oncologist at U Oxford went through 'Predict' which defaults with Radiotherapy - At this point, I am going to proceed with Radiotherapy (starts today) but not going ahead with hormone therapy.
81 out of 100 women treated with surgery only are alive at ten years.
84 out of 100 women treated with hormone therapy are alive (an extra 3).
My decision is based upon knowledge of lifestyle and family history which are not part of detailed results.
It is a tough decision.
Originally, I was not going to do either post-op treatments but because there is no evidence on that decision.
POSNOC sounds like a great option.
29-08-2018 12:41 PM
I was recently diagnosed with grade 1 er+ her-breast cancer followed by lumpectomy and sentinel node biopsy which came back as margins acceptable and 1 node positive
The original treatment plan was to have breast radiotherapy 15 cycles and tamoxifen for 5 years
However because of the 1 positive node I am told I will have to have radiotherapy to underarm which I am very confused about. I also opted for the oncotype DX test which gave me a result of 8/100 which means a low chance of reoccurence.
My question is - is the radiotherapy completely necessary as I have read conflicting reports regarding lymphodema, numbness and other horrific side effects.
I was also offered to participate in this POSNOC trial which randomly selects half the candidates to forgo the radiotherapy altogether as there is great debate about overtreating people.
Any advise on this matter would be greatly appreciated