I'm stressed about whether or not to take part in the Optima trial.

Hi everyone

I was just wondering if anyone has had a similar experience to me because im finding it very difficult to decide what to do. I had 17mm grade 3 cancer with  one lymph node affected. At my first oncology appointment I was told that the standard treatment would be chemotherapy and that my predict score showed a 6% benefit to having chemo. However, I was also told I could take part in the Optima trial, which uses a test called prosigna to analyse the tumour and see how much benefit I would get from chemotherapy. If the test shows a low benefit I would then not be able to chose to have chemo, but would go straight to having hormone therapy. 

What Im finding difficult is that if I go into the trial and it comes up that I dont need chemo I know Ill worry about it, (a lot!) . While i know they wouldnt recommend somethig they thought was safe and beneficial, I would find it difficult not to worry and think that maybe it would have been safer to go for the chemo. I have 3 teenage children and want to give myself the best chance possible of making a full recovery. However, chemo seems a lot to go through when you have been told that there is a possibility that you may not need it. I think I might feel a bit of a fraud having it if I choose not to be in the trial. Also I would feel guilty abot putting my family through seeing me go through chemo when i was thinking it might not be necessary.

Im leaning towards going straight for the chemo but finding it difficult to know if this is the right thing, particularly when the oncologist seemed very keen for me to do the trial.

If anyone has had a similar dilema it would be lovely to hear from you.

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Hi Meg, I had a somewhat similar situation to you.

Following surgery and a few affected lymph nodes I was told about the Optima trial. My benefit from chemo from predict was about 5% I think. In the end I wasn’t eligible for Optima so I went straight for chemo, but I had a good think about it for a few days.

Had I been eligible I would have gone for it. My reasoning being that I would let science make the decision for me. From what I’d read about the way the study decides whether you’d benefit from chemotherapy, it’s quite an advanced study already so they are very confident that it works well. But they need more people to take part to collect enough data for this to become the accepted approach. I was satisfied that they’d already studied enough people’s outcomes that it would be beneficial for me to take part.

If that makes sense to you I think it’s something you could check with the study co-ordinator at your hospital? This should be a doctor who is the lead for this study in your area and your oncologist will be able to put you in touch so that you can ask questions if needed. (I believe if you take part in a study you would be in touch with them anyway, but others could confirm this as I haven’t done it.)

Deciding on chemo was agonising for me as it’s a huge decision, so ultimately I was looking for support with making that and welcomed the input of experts. I thought about how I’d feel with each of the outcomes of the study, had I taken part, and felt I would have been okay with them. The hard part would have been waiting for the result. I was told it’d take about two weeks.

Best of luck with whatever you decide. If you do have chemo, please don’t feel guilty about your family having to go through that. They will want the best for you. This is a scary disease we are facing; there’s no hiding the fact that it won’t be pretty at times. Chemo for me has been manageable. There is no “right” answer; there is only a decision that you feel most comfortable with and that really is the most important thing. No beating yourself up, no guilt - just consider carefully and go forwards trusting your decision. None of us knows what the future holds.

You’ve got this!

Hi Meg 

the ‘right’ decision …will be the one you ultimately make…so make sure your decision is informed and find out all you can about the trial before you decide.

i had grade 2 … 12 mm ducatal BC with one affected node…the predict score showed a 3% benefit with chemo…due to having a previous BC on other side, I was not eligible for any trials…but know I would have declined the trial…cancer doesn’t just spread via the nodes, there is always a chance of vascular spread via the blood, And having had primary BC 3 times now, I wanted to throw everything at it.  But we are all very different people…and make our decisions based on our own particular circumstances… I wish you the very best

Hi Meg. I thought I would tell you my experience. I was diagnosed with BC in 2017, 15mm, with two lymph nodes effected. I consented to chemo and was told about the Optima trial. I did a lot of research and looked at the results of the first phase. You are probably aware that it is a blind trial and half the participants get randomly tested so your outcome could still be to have chemo. I was selected to be tested and my result was no chemo required and I went straight to radiotherapy and hormone treatment. I was peri menopausal so I had to participate in having zoladex monthly too.

I remember at the time talking to two other ladies who both decided against joining the trial. One wanted to “crack on” with chemo without any delay (the trial added about a two week delay). The other chose to have chemo as like you would worry about her decision if she didn’t have it. I would be happy to answer any questions you might have. Michele X 

Hi

You face a real dilemma. I can’t advise you but I can express an opinion: if your tumour is grade three, I personally would take every treatment offered, including chemotherapy. Even a 1% improvement is worth it in the grand scheme of things. It’s unpleasant, has unpredictable side effects but it can (not will) make a big difference. And some women sail through it - you only hear the horror stories.

All the best (and do steer clear of Google - it’s a minefield. If you have questions, you have your oncology team. You also can ring the nurses at the number above. They are excellent) x

Hi, I’m waiting to know if I’m accepted on the OPTIMA trial, didn’t think I’d need chemotherapy after Mastectomy and DIEP reconstruction so it’s been a tough week all round
Has anyone put in for the trial recently? If so how quick did you get the answer
Thank you

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Hi,
I had a similar dilemma that I will share, but that doesn’t mean it is right for you or anyone else on this forum.
I was diagnosed with three tumours, grade 2, the biggest 5cm, with 2 lymph nodes affected out of 19. From that moment, at each appointment, I was told I would have chemotherapy and hormones for 10 years.
Then I went to the oncologist who offered me the optima trial.
On one hand, I would have liked the gene test score and to avoid chemotherapy but on the other, I had been told for 2 months I would need chemotherapy to give me the best chance and now told I may not?
For me, I decided if I was allocated the non-chemotherapy arm of trial, I would panic and if cancer did return, I would blame not having the treatment. I kept thinking that everyone had told me I needed it so what had changed?
I couldn’t take the chance and continued with the chemotherapy and radiotherapy.
Chemotherapy wasn’t great and after the first I wondered if I could continue for 5 more but I learned how to manage. I think there was a big bit of fearing the unknown on the first.
I finished chemotherapy in January this year.
I can only answer for me but:
Do I have any regrets or worries about not going on the optima trial - Not at all
Would I have any regrets or worries sitting here now, if I had gone on the trial and not had chemotherapy - yes
I worry about re-occurence and spread the same as everyone on this forum but I think I would have more if I hadn’t gone down that path, hard as it was.

I always find trying to look at ‘what is best out of these options’ when really, who the heck wants any of them, doesn’t help me.
I turn it round to, ‘which is worst’ then process of elimination, the other is better. Or, go through each looking at, could I ever regret this option? Hopefully it weeds the options down…
Whatever option you chose will be right for you - we’re all different with different priorities and ways of looking at things.
I wish you all the luck and love. Big hugs
Laura

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Sorry, just realised this is an old post. Oops!

Hi, yes it was an old post but I was a new comment!
Really appreciate your response, everything is whizzing round in my head and I feel conflicted in many ways
I will keep you dated
Again thanks for replying

Hi Craftyj,

Chemo was never meant to be in the plan for me, but then after my first checks I was told it was “good news” (before biopsy came back and it wasn’t), then it should have been lumpectomy, but MRI showed more, so mastectomy but lymph nodes “look fine”, then turned out it was there too. Grrr.

I went for the OPTIMA trial on the basis it was very unlikely to change my treatment, and I could be doing something to help others in future. I found out four days before my chemo was due to start that I wouldn’t be having it. Honestly with all the other “it’s fine, oops not fine” experiences it took me a while to believe that I escaped the chemo. I was very relieved, as they wanted to give me six months of it and as a freelancer I was really scared I’d not be able to work.

I think it took a few weeks to get the news - it depends on how quickly your hospital sends off your tumour sample I guess.

Good luck. The stuff they can do with science is pretty amazing, and in order to get ethics approval for a trial they would have to be very sure that they are not putting women at high risk. It’s all very highly regulated.

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Hi Craftyj, I haven’t participated in this trial, but did do some reading about it earlier, as it was mentioned as a possibility at the time I had my axillary dissection surgery. As I only had a single positive lymph node in the end, the trial wasn’t recommended for me. My oncologist said it’s typically offered when you have a larger number (typically 4+) of positive lymph nodes.

It’s a randomised trial with 2 groups. Group 1 participants will get Chemotherapy, followed by Endocrine treatment and Group 2 will have the Prosigna test and its score will be used to determine whether they get Chemotherapy or not, followed by Endocrine treatment. So if you are offered Chemotherapy you won’t know whether it’s based on the Prosigna test or because you were part of Group 1. If you aren’t offered Chemotherapy then you will know it is because you were part of Group 2 & the Prosigna test score.

I’m afraid I can’t comment on the timeframe question you have though, it may be one to ask your treatment team/oncologist as I expect they would probably know based on others already participating in the trial.

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Hi thank you for your replies
I got my outcome- Chemotherapy starts Friday.
I’ve had my PICC Line inserted and selected a wig so all ready for it
Much love xx