I never spoke to the trial team after we decided to pay for PROSIGNA
I’m now in radio which is tiring and a ball ache tbh as it’s daily (and at another hospital)
And I’m 2 injections into my “therapeutic menopause” which I have to say has been so so (insomnia for a few days & very achy hand joints) I dread to think what Letrozole is going to be like when added to the mix but the benefit of hormone for me is 5% (more than chemo)
My understanding is the reason for the trial is they are trying to work out in pre meno women if it’s the chemo induced meno that’s having an impact more than chemo itself for hormonal BC
Anyways for what it’s worth, I don’t regret agreeing to chemo
Thank you- I have been running in circles in my mind for the last week but after reaching out on the forum, I feel like I’m decided on skipping the trial and going straight to chemo. I don’t want to but I feel it’s the sensible thing to do. Thank you for replying. I hope you are keeping well xo
Yes- I thought the check ins would be more on the trial. I now feel like I’m going to go chemo. I fint want to but that’s now where my gut is pulling me I think. Thank you for your reply, it has honestly helped me to process my thoughts more clearly. I hope that chemo won’t be as bad as I’m imagining and that I’ll look back and be glad I did it!
I hope you are keeping well xo
Hi, yes I have two girls 16 and 14 and a bit 10 years. I worry so much about how they will feel seeing me look very different and very tired! My 16 year old is very worried. They all are, in their own ways. I just hope that I’m lucky enough to keep things as normal as I can fit them and be able to take them out etc. Really, it is being their mum they has made this diagnosis so scary for me. Our washbin is constantly overflowing and I really hope I’ll be fit enough to carry on with washing!
I asked about cold capping and my hospital doesn’t do it! I’m in Belfast so now trying to look for good wig places. I’m worried about losing hair. Whereabouts are you?
Thank you very much, that is really nice. If you are happy to send a pic, I’d love to see.
I honestly don’t know where to start with wigs, what the best type is, how goes it stay on, how long for?? So many questions. Have you noticed your hair start to grow back at all yet? I’m so worried incase mine won’t as I already have fairly thin hair.
Absolutely, the kids are why I need to get through this and are keeping me strong without realising it. I know they are trying to be strong but I see the worry in them and it breaks my heart. I can’t stand the thought of not being with them co
Hi @Meg47
Giving you my perspective I had DCIS two years ago and they found 5mm of IDC after mastectomy and nodes clear. They did oncotype but too little to measure so result was no chemo as a result.
Roll on two years and an ultrasound showed a positive node. I now have had full node clearance, chemo, rads and now on zoladex, zometa, anastrozole and abemaciclib.
So I think if you have any doubt it’s no doubt do all you can now to remove it while you can. The trial part should allow you choose it if it’s not clear cut. I would spend more time quizzing your oncologist until you decide what’s best. Good luck
Hi @sam3 I see you’re in Belfast. I’m having my treatment in Antrim and my oncologist referred me for the wig the first time I met her. Have they not done that for you? Actually, maybe they’ll only do It if and when you are definitely getting chemo. It was for the shop called Tresses opposite the City Hospital. They then rang me to arrange an appointment and it was all very straightforward. The ladies in there are all lovely and let me try on as many as I needed til I found “the one”. I’ve actually worn it loads and it’s really pretty good. People who don’t know the circumstances have thought I’ve been for a nice blow-dry
Also in answer to your original question about the OPTIMA trial, I was offered it too and decided not to do it and I’m now getting chemo. The oncologist said the current recommended treatment for someone in my situation is chemo and I decided I didn’t want to take the risk of not getting chemo if I did the trial. I had 3 lymph nodes involved and apparently the cancer was escaping out of one of them into the surrounding tissue so I had the full clearance surgery. I know chemo affects everyone differently but honestly mine hasn’t been as bad as I expected so far. I’m on EC-D and have had 2 cycles so far. No vomiting, a lot of tiredness and heartburn, but both times I’ve had at least 10 good days of feeling normal before the next cycle. Have you made your decision yet?
Hi, thank you! Honestly I’m going back and forth so much. As soon as I think I’ve decided then I read something to make me doubt. How did you find the chemo? I had 17 nodes removed and four were cancerous. The thing about the trial is that you lose control of what happens. If I was one of the ladies whose tumour was tested and it was not clear cut, I’m not sure would they be cautious and go down chemo route. I’m terrified of chemo but also terrified of not getting rid of the cancer or recurrence xo
Hi, thank you for your response! Wow- I really am in a tizzy over this. I had gour nodes which tested positive. There was no mention of disease escaping from them but I also didn’t ask about that- I think now I need to! I’m terrified of chemo and I was swaying toward the trial over this weekend but I must say, when I have read your experience, it has worried me. If I thought I’d cope well with chemo it wouldn’t seem so scary but it’s the not knowing.
Re the wig, thank you- I had noticed that shop on my visits to the hospital. My oncologist didn’t mention wigs. I really feel that my oncologist wanted me to choose the trial. I wish they could tell me simply, what option will give me the best chance but it’s very difficult to get a straight answer. I’m starting to run out of time too, they need me to decide in next few days.
I agree it’s a tricky decision. I think they said the trial had been going on for a while so I’m not sure if it’s possible to access any interim results. On the one hand, if the Prosigna test is accurate for premenopausal women (which by my understanding is what they are trying to prove) then if it suggests you don’t need chemo, that should indeed be true. On the other hand, I just couldn’t settle myself to not have the chemo when the first thing the oncologist said was that the standard treatment for me was chemo They didn’t tell me about the cancer escaping out of the node but I saw the computer screen with my pathology results and it said extracapsular spread. Can you see your pathology report on the My Chart app? Mines not on because Northern Trust has only gone live with the Encompass system this week, but maybe if you had your surgery in the Belfast Trust yours will be on it? I guess I wasn’t really terrified of chemo as I know a couple of people who’ve had the same type, but I can see why potentially avoiding chemo is an attractive option if you do feel scared of it. Don’t get me wrong, it’s certainly not a walk in the park, and I’m not even half way through yet so what would I know? But so far it’s honestly not as bad as I thought it might be. I’m just outside Ballymena by the way xo
I am not in the same boat as you at all but I’m in a medical trial and I also felt that I was being pushed towards it - it isn’t a nice feeling . However there are very strict criteria for every trial and they wouldn’t recommend it if you didn’t hit the criteria . They wouldn’t accept you in the trial if you weren’t suitable as for it as any adverse outcome to you would show up in their results . If you’re unsure try to find out as much information about it as you possibly can including how long it has been running not just nationally but in your particular hospital and how they are going to monitor you. I was the first person in my hospital on the trial and the pathway wasn’t properly developed , things were disorganised and communication was missing which all added to my stress .
You could talk it through with the Nurses on the helpline from 8am tomorrow on 0808 800 6000 - they won’t tell you what to do but may be able to help you come to a decision . You could also ask your clinicians what they would do if it was them or what they would advise their wife / daughter to do in your situation.
Hi, thank you
God, I haven’t even registered on the encompass thing so haven’t seen my pathology. Surgeon and oncologist said the surgery was good but I guess that could mean I range of things. I need to get on this app!
I’m pretty sure the chemo I’d be getting is EC and D, three sessions of each. It is reassuring to hear that you weren’t nervous about it. I have myself in a complete flap! I am booked for chemo on 21st or 22nd nov but as soon as I put the phone down, I worried about it. The oncologist def was pushing toward the trial but without straight answers, if that makes sense. I just started doubting my decision
Ballymena, not that far away then! Xo
Yes the oncologist is def pushing subtly toward the trial and I’m asking questions but not really getting anywhere. Of course, I realise it’s a trial and they cannot give me definitive answers. I keep telling myself they wouldn’t be suggesting this if there was a real risk of harm to me but it’s just the unknown. Thing is, even if I do go into the trial- the likely outcome is chemo anyway! I feel like a complete basket case at the minute. I wish I was brave enough to get on with chemo without having a meltdown over it! Did you have chemo?
How are things going with your trial and treatment? I hope you are feeling and keeping well
I know when I spoke to the I oncologist I felt completely bamboozled with all the info, and I’ve been working in healthcare for over 20 years, and specifically in oncology for most of those. I spoke to a friend who’s a radiologist and had seen my pathology report and she said if it was her, she’d take the chemo and not do the trial. So that helped cement my decision. Another thing is, if you start the chemo and you absolutely can’t stick it, they’ll reduce the dose, or you could even quit if you decided to, so I thought it was best to at least give it a go. They seem to be very on top of trying to minimise side effects these days and you can phone the helpline 24/7 with any issues.
Morning, thanks again. It really is a worrying decision. I’ve just received my chemo appointment through the post and my stomach has turned over. I wish I didn’t feel such a fear of it! The trial nurse is due to phone me tomorrow to see what my final decision is. I did try to get eight of my pathology on the encompass app but there are no reports on it, only letters xo
I’m at a different end of the scale to you in that I was very low grade - lucky I guess though it didn’t feel that way at the time. I possibly shouldn’t have entered this conversation because I’m not in the same boat and my treatment is finished now but I remember the dilemma of whether to accept the trial and the feeling that they were pushing me towards it very well. I’m on the SMALL trial and had my initial procedure done under radiological guidance and local anaesthetic - it failed and I went on to have lumpectomy SNB under GA which was successful with clear margins and negative SNB . I was left with some anger a lot of which was directed at myself because I knew I had taken the trial for the wrong reasons . And fear because of the 7 week delay between the failed procedure - which I knew had failed at the time , and the surgery also whether that first procedure might have somehow complicated things inside my breast . Those fears have largely settled now but I’m glad that I had the operation now especially the SNB and think I could have saved myself a lot of stress by just going for that in the first place. My Radiologist told me in January that all the other women that she has done this procedure on have had a successful outcome though.
I have however developed a good relationship with my Research Nurse who had been contacting me on a 6 month basis - now yearly . There were also questionnaires for me to complete and it’s nice to feel that someone is keeping an eye on you and that the data that you have provided will help other women in the future . Without the research that has gone before there wouldn’t be the improvement in survival rates and treatment regimens that we have now. I did feel like a bit of a guinea pig then but not so much now.
The stakes are a bit higher for you - I would tell your Oncologist that you feel you are being pushed towards the trial and ask why they are doing that . Your team should be able to explain the potential benefit to you in a way that you can understand as well as how you are going to be monitored and what they will do and how quickly if there is a problem. Find out if accepting the trial will cause a delay in any treatment or whether it might speed it up because when you are on a trial there are targets that need to be hit in order for the results to be considered valid . If you’re in any doubt I would still ring the Nurses on the helpline and talk it through with them . Best of luck to you whatever you decide . Xx
Your thoughts are still useful to me, even if our situations differ and I really appreciate it.
If I go straight to chemo, my first session is 22nd of November. If I go trial there will likely be a delay of couple of weeks due to trial things having to be put in place (obv my indecisive brain has not helped!)
I’m sick of listening to myself to be honest. I gave myself running in circles! Xo
xo
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They didn’t tell me about the cancer escaping out of the node but I saw the computer screen with my pathology results and it said extracapsular spread. Can you see your pathology report on the My Chart app? Mines not on because Northern Trust has only gone live with the Encompass system this week, but maybe if you had your surgery in the Belfast Trust yours will be on it? I guess I wasn’t really terrified of chemo as I know a couple of people who’ve had the same type, but I can see why potentially avoiding chemo is an attractive option if you do feel scared of it. Don’t get me wrong, it’s certainly not a walk in the park, and I’m not even half way through yet so what would I know? But so far it’s honestly not as bad as I thought it might be. I’m just outside Ballymena by the way xo
