I was offered the Optima trial as well and had to make the decision very quickly. I decided to participate in it because it was explained to me that I had one tumour that had me on the cusp of chemo or no chemo. I thought this would help and it was a nice to be a part of something to help future diagnoses and treatment plans.
The day before chemo was due to start I found out I had the test and it came back I wouldn't need chemo. I was in shock. I couldn't believe it. I do feel the appointment wasn't handled well and I saw the registrar and not my onc doctor. Too many questions. They sent me home with my HT prescription and told me to wait for radiotherapy. That was last week.
I saw my surgeon this week and he was not happy with the decision by my onc team. He just felt that the clinical trial gave some insight, but not enough to determine the change in my treatment plan. He referred me to another onc doctor who specalises in BC in young women (I am 40). And I got the news today that she and her colleagues agree that I need chemo.
How it was explained to me today, the prosigna test is testing the impact of chemo (to help limit recurrence) for 5-10yrs. So yes, it does have little impact. But when you go to 20+years it has an over 20% impact. And given my age today's doctor is saying we want to limit recurrence for 25+years and those are the stats she is looking at.
I'm in the situation where the surgeon and BCN are avoiding answering questions about a need for chemo.
I get fobbed off with 'talk to the Oncologist' but my appointment isn't till next week! My surgery was initially. In early Jan, so I will have waited 9 weeks, which I think is unacceptable and doesn't help my mental health!
I have asked about genomic assays at my follow up appointment, and they haven't bothered to do any, again I get 'talk to the Oncologist' which is frustrating.
The BCN then started talking about the optima trial, why bother talking about trials that involve chemo when they won't give me a clear answer? I've told them I won't participate in any trial that may not give me the treatment I need, but she doesn't seem to hear me (I've told her three times now!)
It's very obvious they know the answer but don't want to share, I know it will have already been discussed at MDT and they will know from experience of others in the same situation.
I understand why trials are required as I've been involved in them professionally, but I'm not staking my personal future on OPTIMA.
Interestingly I asked about Posnoc at my first appointment as it was advertised in the waiting room, told by one surgeon I wasn't suitable, then found out after surgery I would have been.
All trials are listed on the Cancer research site, Do your own research, don't leave it up to them. There may be some that are relevant to you they don't tell you about.
Were you offered the Optima trial as your experience does sound very similar.
wishing you a quick recovery from your treatment. Keep smiling , it will be worth it.
Look after yourself and stay in touch x
I was interested to read your post. Sounds very similar to my experience. I was diagnosed in Oct 18 with 22mm lump grade 2, ER+, HER-2 negative, axillary lymph node +. After having a CT scan and vacuum biopsies I had a mastectomy in Dec 18 with lymph node clearance. After my surgery 5 out of 17 lymph nodes showed up.
I started my Chemo sessions 3 weeks ago, 2nd cycle due this week. I didn't want Chemo but feel that I need to have all the treatment available. I will also have radiotherapy and tamoxifen (10 years).
I was recommended Chemo as all the factors ie my age, lymph nodes detected etc put me in high risk category of it returning so here I am facing into 2nd cycle. Hated the side effects, taste buds gone, nausea and fatigue but it's only temporary...life is too precious!
Hello from a person with the same dilemma.
I agreed to the Optima trial yesterday , offered after 6/16 nodes affected. Lumpectomy for a 12mm
stage 3 .
I was horrified when told my node removal would require chemo or the chance to opt for the Optima.
Oncologist could not comment or help me to make my decision and wanted my answer in 3 days !
I decided that if the tumour/ lymph nodes were being looked at again , it was worth going for , now I am waiting to see what the outcome will be , chemo or hormone .
i also had to attend a CT scan for chest , abdomen and pelvis , so if that shows any more spread I will not be eligible for the trial. Scary stuff.😳
what did you do ? I see that your post was January. I would love to hear if you opted for it .x
I’m in the Optima trial. I posted the below in another thread about this trial, and thought it might be helpful here too:
I had a mastectomy and sentinel lymph node biopsy in early September. I’m ER+, HER2-, 4.2cm lump with macrometastesis in 1 of 5 nodes. I didn’t have a full clearance, my surgeon gave me the option of having radiotherapy to the axillary instead (plus the option of the POSNOC trial which is studying whether further treatment to the axillary is even necessary when few nodes are involved. I haven’t decided if I’m going to take part in that trial).
I will also have radiotherapy to the chest wall.
I joined the Optima trial in the hope that it would tell me I wouldn’t need chemo... but I was selected to have it. They don’t tell you if you’re having chemo because you’re randomised into the control arm where everyone gets it, or if you’re in the testing arm and the Prosigna test says you need it.
I’m now halfway through FEC-T chemo - I’ve completed the FEC regime, and am about to start the T.
I have to admit, as much as I am hating the side effects, I’m glad to be having it - I want to throw everything I’ve got at this. Although I do wish they would give more information about the trial arm and prosigna results!
Nikkit - the thing about working during chemo is the risk of infection and that will vary depending on the sort of work you do. I was told no public transport, no crowds and avoid anybody with a cold etc. I was lucky (?) and had chemo during the summer but I lived very quietly during that time - if I were having it now, I'd be even more careful with people coughing and sneezing all around me.
Hi do you mean the onco type test? I had 2 lymph nodes removed in October. One was positive. I am having anc next week. I would jump at the chance of the oncotype to see if chemo would be worthwhile