supremo trial

Hi all
I have just had my 5th cycle of chemo and was led to believe that I would have 3 weeks of rads, but when I went for my chemo review on weds was told as I only had 1 node involved I won’t be having rads now.
I was then asked to take part in a trial called supremo trial which involves 50% of women having rads and 50% not having rads and being monitored over 10 years.
I just wondered if anyone has been offered this trial or if anyone is on it at the moment. My tumour was a grade 3 and I have had a full node clearance and mastectomy. I am 41. Not sure if this makes a difference. Thanks in advance for any advice
Chris xx

Hi Chris
I haven’t quite worked out how the rads is worked out, l tried to ask my onc yesterday, but she wasn’t very forth coming, as she was not my regular onc l thought l would wait until l see my usual man! my rads are due in November.
Like you l had a mx, but had 16 nodes infected, l was told l would be having 3 weeks rads. But speaking to two ladies today, both are having 5 weeks rads, both have had mx and one had l node infected and the othe had 3, so l need to know the reason l am only getting 3 weeks.
when l phoned up the helpline they suggested the 5 weeks was the same as he 3 weeks with lower dose, but need to confirm with my onc.
l would not be happy at not having any rads, just want everything they can give me.
Love
Sandra xxx

Hi Sandra
Thanks for your quick reply. I to have heard that 5 weeks of rads is the same as 3 weeks and it is that the 5 weeks is a lower dose than the 3 weeks.
I did go on the mcmillan website and I got the impression that if only 1 node was involved then it was onc decision whether to give rads, but any over 4 they automatically given.
I did speak to another lady at same hospital who was also in same position as me, who was also told at beginning of treatment she would be having rads now told she doesn’t need them either. This lady was also offered same trial but she declined. I’m just hoping the hossie isn’t offering rads just to get women to agree to the trial. I’ve got 3 weeks to decide and have always thought if I was ever asked to go on a trial I would or how would research ever progress if no one took part, but I don’t want to risk the cancer re occurring through lack of rads. Onc did say that rads would only give a small percentage more to the 10yr survival rate than I have now.
I’m so confused can’t decide what to do.
I don’t very much post on here but do follow everyone’s post, you all give such helpfull advice.
Chris x

Hi Sandra and Chris,
I had a grade 3 tumour with 1 node infected and had radiotherapy. I took part in a different trial called IMPORT high (high being I think because it had metastasised). Don’t quote me on this - but standard treatment is around 4 1/2 weeks (I had 23 days, 15 doses to the general area and 8 booster doses to the tumour bed). The trial was randomised for patients to receive one of 3 treatments - 1 being standard treatment which is what I got. The other 2 treatments they were trialling involved less visits but a higher dose to the tumour bed and less to the general area, given over 15 doses (ie 3 weeks). They are trying to ascertain whether it is more or just as effective given over a shorter period, saving on cost, travelling time etc etc.

Not sure this helps very much as it is a different trial but thought I would share my experience with you.
Lynn x

Hi Chris

If you google supremo trial there is a website which explains it all. I just have - was interested as I had 1 node, but it is for women with mx. It explained the trial really clearly in the patients section. Hope it helps. Debx

Hi lynn and midge.
Thanks for your comments, I just wrote a lengthy reply and posted it but seemed to have got lost in cyberspace lol.
I have read up on the trial but was worried that I was being used as a guinea pig as was told I was having rads, then told I was’t but could go on the trial. I will ask onc lots of questiins next time I see him…thats if he don’t interrupt when I’m asking like he did the first and last time I saw him. I don’t think he likes you asking to many questions, whereas his registrar is so lovely and takes her time with you.
I’m going to bed now.
Thank you again Chris x

Hi Chris
You say that having rads will increase your 10yr survival chances (albeit by a small margin). Do you think this benefit is worth the downside of having rads? This is a personal decision and if you will not be happy not having rads then say so and I’m sure they will oblige.
I tend to think about the benefit the other way - if told 90% 10year survival chance and treatment increases that to 91% this seems a small margin. But if told your chance of not being around in 10 years has decreased from 10% to 9% this seems more worthwhile!
Good luck whatever you decide.

Hi Chris
If it help you to know I work in cincial trials. I used to be a research nurse and then was diagnosed with BC myself so I’ve sat on both sides of the table!. Clinical trials are extremely highly regulated, I can undestand why you feel a bit like a guinea pig but it isn’t like that. Before any clinical trial can open there are very strict ethics regulations the trial has to face as well as regulatory standards from a medical point of view. Clinical trials usually compare the current acceptable best standard of treatment with an new treatment which has to be justified by the regulations I mentioned above. This is how medical care moves forward. Usually you are never missing out by taking part in a trial, you get the opportunity to try a new treatment which may or may not be advantageous to the current treatment. Most centres that run clinical trials have specific trials research nurses and they are often the best source of information because they have more time to sit down and explain everything fully. Also when I was a trials nurse all my patients had my phone number that they could call at any time and I always made sure their scans and appointments ran according to plan so no-one slipped through the net. Alot of people like going on clinical trials because I think you actually get closer follow up and because your consultant is ultimatley responisible for how you are progressing on the clinical trials it will (?Should!) be him/her that you see at every follow up appointment. The other thing about clinical trials is that you are free to withdraw at any time and you don’t have to give a reason and your continuing medical care will not be affected by your decision to withdraw. The Cancer Research UK website has really good information about taking part in a clinical trial and what it means.
Good luck with whatever you decide. xxxx

It must be hard knowing what to do for the best. When I had rads I only wanted them to zap the tumour bed (where any remaining cells are likely to be) not zap the whole breast - cells in the lymph circulate around the whole body, not just locally around the breast! The oncologist said there was no evidence really for giving radiotherapy for the whole breast and they were going to do trials into it.

Thank you all for your comments.
Think I’d just resigned myself to the fact that I would be having rads, then suddenly being told that I didn’t need them totally confused me. I prob will do the trial as I know with or without the rads I will be more closely monitored and I really want to give best possible chance for the future.
Good luck to all of you through the journey ahead, I can’t believe I’m nearly at the end of mine, when 1st dx in feb it seemed a lifetime away and now only 1 chemo session left.
Chris xx

Hi everyone

The 3 weeks rads and 5 week rads give the same overall amount of radiation, so the 3 week rads are of a higher dose on each session. When I started my rads at the end of February it was just starting to happen in my hospital to switch from 5 to 3 weeks. I was kept on 5 weeks due to my eczema which can get very bad, it was felt it would be less affected by a lower dose on each session. My skin did quite well and I only have one sore patch which is proving difficult to clear up. The switch to 3 weeks came from a clinical trial which showed 3 was as good as 5. So I think most ladies are being switched to 3.

As to no rads, not sure I would be happy with that, rads have been a good constant in cancer treatment and has been shown to be very effective.

Bboonie, I think we are at the same hospital, North Middx? as previously mentioned l spoke to two ladies and they are both having 5 weeks in Sept and Oct. another lady l spoke to today is having 6 weeks at the North Middx. l still need to speak to onc when he gets back off his hols.
Love
Sandra xxx

Hi Sandra
Dr Karp likes 5 weeks thats why. I asked about the 3 weeks before I started rads and was told he doesn’t like 3 weeks. I thought with my eczema 3 would be better. The ladies that are under North Midd oncologists were in February all being changed to 3 weeks, even though they were original being told 5.

I think Dr Karp will keep to the 5 as he told me he feels that with the 3 you have more possibility of skin problems.

I have heard of some ladies getting more that 5 weeks, i guess it is all down to the indivuality of the diagnosis.

All that said rads is a walk in the park campared to chemo.

How did the tax go yesterday?
Marian

Sandra ,the dose from radiotherapy is cummulative which means its the amount of radiation you get in total that counts not the time over which it is given.
I had 5 weeks but it has the same total dose as those getting 3 weeks as they got more radiation at each session. Mine was over 5 weeks as I have an implant following a previous mastectomy and they felt it was less ikely to suffer damage fron a lower daily dose.
HTH
Dot
xxx

Hi Dot
Yes, l had been told that by the helpline, what confused me was out of four ladies, two had two node involved, both were having 5 weeks with boosters, and had a mx,
one had a lump with two nodes, she is havin 6 weeks with boosters, and l had a mx with 16 nodes! and been told 3 weeks with no boosters, must say the onc was vague, the more l questioned her the more she said ‘don’t worry’ so when my onc is back from his hols, l will confirm with him!
Love
Sandra x

Just seen this thread but had queried my rads therapy. Am not on a trial Told by radiotherapist that we all have 15 and 3 boosters to excision site. Told also that total dosage is 40 GY and that this is devided between 15 sessions then 3 boosters to excision site But as Dotchas says feel that it the total dosage divided between sessions. Will now query this more. I had node involvement of 4/11 but the rads are not pointed there. More at SCF area.And both sides of what is left of mmy boob. Not sure that this is any helpful as we are all so different will be following this up on Mon when I have my next rads. Hugs Jackie

Hi Chris,
I was similar to you, had mx, chemo and had 1 node affected. Initially was told would be entered for the supremo trial but then they said no had got that wrong and I wouldn.t, sorry can’t remember reason. Told I was borderline for rads, said if 5 or more lymph affected, tumour 5cm or more or not clear margins then would need rads, thats the criteria my onc gave me. In the end as I had a multi focal cancer and one area had a small margin it was 15 rads for me and am glad I had them. Saying that if I had been offered supremo trial I would have consented and to be honest would have been a bit disappointed if didn’t get rads…see it as more ammunition.
Hope this helps
xx

HI chris,
My onc told me that they only did rads if you had more that 4 nodes involved. Hope this helps.
Jano x

Oh how different our regimes are. I was to have WLE and rads only before last Christmas then scans found 1 node so plan changed to chemo, surgery then rads.ANC showed 4/11 affected nodes. NOt sure this fits with supremo trial as per thread title.Jackie

Thanks again for your posts
It seems it depends on which onc you speak to whether you get rads or not or maybe it’s your post code area.
I think because I had been told I was to have 3 weeks of rads and then told that I wasn’t having any I feel like I’m not being given everything I should( if this makes sense).
I was talking to another lady who attends same hospital and she to was told she was to have rads and has also been told as only 1 node involved she didn’t need it either. She was also asked to go on the trial but declined.
I have thought more about it over the weekend and I will go on the trial but make sure that I am not getting less than I would otherwise of had.
I do feel that if I didn’t go ahead I maybe hindering what could help other people in the future.
Chris xx