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

Going through breast cancer treatment Chemotherapy
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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!

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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

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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 

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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

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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!

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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

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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

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Hi Michele
I’m keen to know how you are and how you got on with hormonal suppression. I’ve just consented for the Trial . I’m so nervous

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Hi Wall123. I am good thank you. I was on Tamoxifen for 5 years. I had typical side effects. Hot flushes, not sleeping that well, moody and cramp in my legs but all manageable. At the end of 5 years I had a call with my oncologist and we made the decision for me to come off Tamoxifen. There is a history of DVT in my family plus an alternative AI wouldn’t be recommended to me as my Mum has osteoporosis and scoliosis. I have a bone scan every three years and so far they have been good. Let me know if I can answer anything else. Michele x

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Hi, I’ve been offered the optima trial. I was offered it almost a week ago snd I just don’t know what to do. My oncologist said that chemo only helps 5% of women and can be detrimental to health. This really threw me into turmoil. I don’t know what the right thing is to do. I’d love to not have chemo because the thought of it terrifies me. I don’t know why I’m posting this- I know it’s a very personal choice- I’m just lost! Sam xo

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Hi @sam3
I was offered OPTIMA too but decided to pay for the test privately (PROSGINA) to “know” my tumours characteristics & risk of reoccurrence as the trial doesn’t let you know

I did have chemo & the PROSIGNA results allowed me to have TC chemo over EC-T

Of course there are some awful stories of reactions & side effects & I had some iffy moments too but it was doable

I rested when I needed to but I also have done uni open days, met friends and been out with my 3 teens (and sadly still did the laundry for all :joy:)

Re hair it is hit & miss but I was lucky with the cold cap & lost a third or so of hair

It’s just v thin & I use a hair band

Im now doing radio which is a breeze bar the end of week fatigue

One thing to add about the trial which I still wonder if I should have done it is that they will follow you for 10 years so think there is more hand holding post active treatment

I wish had that

Best of luck with what you decide

X

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Hi, thank you so much for your reply :purple_heart:

Hmm- I never actually considered paying for the test privately. I’m not sure how long that might take to arrange. Forgive my ignorance but what was the difference in the types of chemo you mentioned? Obviously there was a benefit to you re the type of chemo?

I am really worried about hair loss. I have pretty thin hair as it is so I’m not sure how effective the cold capping would be. Is it very hard to stick the pain?

If you dont mind me asking, how much was the test privately?

I have wondered about the trial and being more closely monitored, there would certainly be a bit of reassurance in that sense.

Sam xo

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Hi Sam
It was £1600 and my medical oncologist had to approve/do the referral.

For reference my diagnosis:
32mm grade 2 idc + dcis
ER & PR +
Her 2 Neg
Ki67 5%

I was clinically node negative but after the SLNB I had macromets in 1 of 2 nodes (3mm)

I had a PET scan after surgery which didn’t show any rogue activity so I went back for a re excision for better margins (mine were “close” but not “positive”). I opted for radio on the nodes vs the clearance and my surgeon confirmed she was happy with that (along with the breast as I had a lumpectomy)

Re chemo, due to me being under 50 at the time and being pre meno my medical oncologist said I was in the grey area for chemo and she always err’d patients on the fence, towards chemo.

My PROSIGNA also put me in the middle (ie in the middle of the intermediate risk zone). I was not low risk nor was I high risk.

With that in mind, I was given TC over EC-T due to my risk of reoccurrence and benefit of chemo (which was 4% again right on the fence - 3% or less usually means no chemo, 5% or more is defo chemo and in btw is a discussion, still don’t understand that)

TC is dose dense Docetaxel every 3 weeks with Cyclophosphamide for 4 cycles usually (or x 12 weeks lower dose Paclitaxel and Cyclophosphamide added in every 3 weeks of the 12)

EC T is Epirubicin and Cyclophosphamide for 3 or 4 cycles every 2 or 3 weeks (seems to depend) followed by dose dense Docetaxel or Paclitaxel for 3-4 cycles every 2-3 weeks (or weekly Paclitaxel but not dose dense). Seems that every medical onco tweaks their chemo script

I do sometimes wonder if I should have accepted EC T vs TC but in the US it is prescribed a lot more frequently for case like mine so I am happy with the decision.

The reason why I wish I had more hold handing of a trial is that I am also going to need endocrine and have just had my 2nd ovarian suppression injection and starting Letrozole after radio.

I also have my first Zometa infusion in a few weeks. It is a bit of a minefield and not sure as much care is given to patients at this stage of the treatment pathway (just my experience so far).

Hope this helps
x

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Hi :blush:
Thank you for all this info! I must admit, I don’t yet understand all of the terminology but I’m sure it will all become more familiar to me.

Re the hand holding in the trial. After your messsge earlier, it got me thinking snd I asked the trial nurse how closely I would be monitored. She said I’d be seen once a year or, depending on my levels etc, I might be seen every two and half years. I really thought it would be closer monitoring than that.

I’ve been thinking on what you said about the 3-5% thing. I fall in the 4-5% and I have four (known) affected lymph nodes so I’m leaning more towards bypassing the trial and opting to go straight to chemo. I really don’t want chemo but am just feeling like I have to do it for more peace of mind. I just hope I can be as lucky as you regarding ease of getting chemo. I will then be having radiotherapy and hormone therapy. I really dread losing my hair! :sob:

How are you feeling with all of your other treatments happening?

Sam x

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I was offered the trial back in august. In the end i chose not to do it and go straight to chemo. I am under 50, with lymph involvement and a multifocal tumour that was only partially removed. I felt that given the fact that it had already travelled to nodes, I’d like to blast whole body with chemo.

Good luck with you decision and next steps x