Hi, I’m loking for some support and advice from all you secondary ladies. I was told recently that the treatment I had been having, Tax/herceptin hadn’t worked and that I had progression in my bones and spots in my lungs they were uncertain about but think are mets.
I was encouraged to taked part in trial of a new drug but when I met with consultant running the trial today he said he is not convinced that I have had progression and that I might not meet the criteria for the trial. He said in his opinion the new activity seen in bones on CT scan is very common while on treatment and does not mean progression. I am having another CT next week and he said hopefuly this will give a clearer picture about the lung issue as it is a spiral scan and gives a better picture. He said if I don’t get on the trial he wants me to go back on paclitaxol/herceptin.
He also question my previous oncs decission to put me on femara after my chemo in my original treatment plan. It has kind of left me doubting the decisions made about my care team.
Has anyone else experienced this difference in opinions between oncs? I just don’t know what to think and feel very confused. It’s been six weeks since my last treatment as they stopped it while trying to sort all this out, so starting to get a bit worried about having nothing for so long.
any advice/opinions would be appreciated.
Pumpkin x
Sorry to hear you are getting confused messages from Oncs - not what you need when faced with this disease etc. Have you thought of getting a second opinion from another hospital - I don’t know where you live but lots of posters on these threads seem to think it’s a good idea to ask for a 2nd opinion and suggest the Royal Marsden. Hope others join in to give you benefit of their experiences - best wishes
My personal view is that your second Oncologist is doing the right thing in wanting to confirm that there has been progression. It would be dreadful to put you through treatment that you don’t need (not to mention the awful worry).
With regard to whether it is right that you were started on Femera immediately after your chemotherapy, it depends on whether your cancer is oestrogen receptive, and whether you are post-menopausal. If your cancer is not oestrogen receptive, there is no point in you having endocrine therapy, and if you are not post-menopausal there is no point in you having Aromotase Inhibitors (usually Tamoxifen is given to pre-menopausal women).
If you are not sure which of the Oncologists is right, then maybe you should consider a second opinion (as Frances suggests).
Thanks frances, I will see what the result of this new scan is and decide if I need another opinion. I am in scotland so referral to marsden not possible. I’m a bit worried about going down that road as I don’t want my treatment delayed any further, it’s been six weeeks since my last treatment and if I have to wait for another opinion who knows how long that will take.
Lemongrove I am oestroegen +, was previously on tamoxifen after primary diagnoses. My first onc said I would go onto femara as post menopausal, second onc said unlikely that I am post menopausal as i’m only 42, I asked if blood test would determine this and he said blood test not reliable and he would not put me on femara, he said that would actually increase my oestrogen levels. Again a complete difference of opinion. My original onc is on holiday for three weeks so I can’t even see her.
The more I think about it the more annoyed i’m getting, this is my life they are talking about, how can there be such a vast difference in opinion? And I’m really angry that I was told I was eligable for the trial, signed all the consent forms, and now being told I might not be! I only hope this new scan shows something more conclusive one way or another so I can get some form of treatment.
Pumpkin x