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Should I agree to Optima trial

19 REPLIES 19
Member

Re: Chemo after Surgery

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.

 

 

 

 

Member

Re: Should I agree to Optima trial

Hi, 

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. 

Member

Re: Chemo after Surgery

Hi Tracey, 

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

Bebe

Member

Re: Chemo after Surgery

Hi 

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!

Member

Re: Should I agree to Optima trial

Hi Nikki,

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

Member

Re: Should I agree to Optima trial

Hi pigeon
Thanks for the reply.
Yes I know what you mean about throwing everything at it.
I was offered the posnoc trial but when spoke with my onco she thought i should opt for the ANC which proved correct as it was in another node.
I am petrified of Chemo. It's so hard I'm trying to keep a positive outlook for family and friends when I'm fact I just need to to go in a corner and cry my eyes out. For the first time since my diagnosis last July I've started to ask why me?
Life can just be so unfair.
Sorry dont mean to be self centred I know we are all going through the crap together but ...well you know 😪
Member

Re: Should I agree to Optima trial

Hi Nikkit 

 

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!

Highlighted
Member

Re: Should I agree to Optima trial

Hi Nikkit,

I'm good ta, not that I ever really wasn't. I went back 2 weeks after my mastectomy though was off longer for the ANC and muscle shave cos the wound wouldn't heal properly. Then I went on holiday before I started chemo ( I made them wait).

I did public transport and a public facing role but had no problems and no signs of infections. Having said that I never get them anyway. I must be only 55 year old woman who has never had a urine infection in her life.
Member

Re: Should I agree to Optima trial

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.

Member

Re: Should I agree to Optima trial

Oh I see.  My favourite words at the moment are "I dont want that" but dont always get what I want!

Member

Re: Should I agree to Optima trial

Sally thank you its nice to hear positive comments about Chemo. Nice to know not everyone had a horror story.
I like you, don't do sick.
Went back to work 5 days after breaking my ankle and I am on my feet a lot !!
I panicked when they onco said they don't recommend you work during Chemo. That's ridiculous who can afford to take 5+ months off and in this day and age what company can afford to pay you?
If I have Chemo j plan yo work as much as I can. My work have been fab way I g work when I can they will support me when I can't.
How are you now ?
Member

Re: Should I agree to Optima trial

Daisy unfortunately you font get to chose it is a randomised test so 50/50 test or straight to chemo.
Obviously ideal case scenario get on test part and find out dont need chemo.
If only we lived in an ideal world !!
Community Champion

Re: Should I agree to Optima trial

I agree - good luck - let us know how you get on .
Member

Re: Should I agree to Optima trial

Thank you ladies.
The more I think about it the more I think I will go for the trial.
I genuinely dont think I could forgive myself if the cancer came back and I had the opportunity before to do something to prevent it.
Obviously I don't want chemo who does?
But a few months of potentially feeling rough vs it coming back as a secondary. No contest .
Community Champion

Re: Should I agree to Optima trial

I Would go for it - sounds like it could be really helpful in making a decision. .
Community Champion
Member

Re: Should I agree to Optima trial

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

Community Champion

Re: Should I agree to Optima trial

Nikki - it would make me feel uneasy too as it is not what you would expect from a grade 1 tiny tumour is it ? What test are you being offered ? I haven't been through chemo but there are certainly ladies on the forum who have managed to work with adjustments .
Member

Re: Should I agree to Optima trial

HI,

Someone will correct me if I'm wrong but I thought chemo was standard if cancer was found in the lymph nodes. Please don't be scared of having it because it probably won't be half as bad as you fear. I had 22 weeks of chemo with barely a side effect. Life carried on pretty much as normal except I was a bit fatigued (especially through the really hot summer weather).

As for work, I worked full time albeit on slightly shorter days all the way through. I commuted into London on the train going in either very early before the rush hour or a bit later to guarantee a seat on the train and I left a bit earlier for the same reason. Work were fully supportive and we're just happy for me to turn up for however long. I arranged it so chemo was on Fridays so I had three day weekends (I'm not daft) and didn't go in those days. The only other time I had off was 2 days when I got a blood clot (but that's by no means normal so don't worry about that).

I don't do sick (having had less than 10 sick days prior to this cancer in as many years) so I think in my head getting unwell from chemo just wasn't an option. I wasn't going to allow it to happen and it didn't.
I hope this info helps you. Good luck.

Sally
Member

Should I agree to Optima trial

Hi Ladies
Belated Happy New Year!!
Well yesterday was a true rollercoaster.
Went for my check up following my ANC in December.
Told it was in one more node ( total 3/13)
Surgeon said tiny chance may need chemo but probably not.
Went home and celebration.... no more cancer in my body only radiotherapy and hormone treatment.
A couple of hours later get a call from the BCnurse.
"We've had a cancellation for onco do you want to come in this afternoon". I agreed thinking we'd be moving forward with planning.
Get there the onco immediately starts talking chemo.
My tumor is only a grade 1 tumor gound on a routine mammogram but hasnt behaved "as it should do" at all.
When it was diagnosed it was between 3&5mm .later they found a 15mm area of dcis in a seperate area.
When they removed the tumor it was 15mm
Er+ her-
It was in both nodes removed during lumpectomy. Onco recommended ANC
as not expected to be lymph node involvement with grade 1.
Mow I have to make the descion. Onco is on the fence. She kept saying yesterday. A grade one shouldn't behave like this, I feel there may be something else lurking. Either that or ive had it for a long time undetected.
My head tells me to go for the test either result Im covered.
My heart is petrified of Chemo. I don't want it , but then six months of hell to ensure the rest of my life? I'm 52.
I know it shouldn't worry me but I do also worry about work.
Has any body carried on working even part time during Chemo ?
Sorry for the long post my brain has been working overtime all night.thanks for any advice ladies xxx
Keep up the talking its amazing how much it helpsxxxx