Wanting support and opinions

Hi Nico53 and a warm welcome to our spot in the Online Community. Having read your post I would definitely ask for a second opinion. We always assume that the MDT team have taken everything possible into account when making their decisions and generally go along with what we're told as they are the experts. Having said that we want to fight as long as we can with everything we've got so you've nothing to lose by being persistent.

You could also ask the advice of The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. Click on the link here What is PALS (Patient Advice and Liaison Service)? - NHS (www.nhs.uk)

Sending you welcoming hugs, Barb x

Hi Nico53,

I’m so sorry to hear your news. I’m not surprised that it’s all come as a complete shock to you. I would definitely seek a second opinion and I’ll explain why.

My surgery 4 yrs ago was for other reasons than cancer. When the histology came back, I was told that I had stage 3 incurable endometrial cancer. Like you, I was in shock as I had no symptoms. My local oncologist referred me to the Royal Marsden for a second opinion as she was unsure about how to proceed. Unfortunately they confirmed that the residual mass in my right pelvic wall was inoperable due to the amount of adhesions in that region. Long story short, I spent the next 3 yrs taking a hormone inhibitor, which initially stopped my cancer from growing. Unfortunately, it’s started to grow again over the last 8 mths, so the Royal Marsden referred me to the QE in Birmingham for radiotherapy.

Now this is where it gets interesting. The radiotherapy expert at the QE totally disagreed with the Royal Marsdens approach. He automatically referred me to the complex gynae team for review. After several meetings, the surgery team at the QE contacted me to explain that they had the relevant experience to successfully operate on me. However before surgery, they wanted me to have 3 cycles of chemo to see if my cancer reacted to it. The good news is that my CA125 marker has gone down from 429 to 165 after 3 cycles. The Royal Marsden had previously told me that grade 1 cancers don’t react to chemo as they’re not aggressive enough.

I’ve also learnt recently that the specialists who attended the QE MDT had differing opinions on what was the best way forward for me. My chemo oncologist believes I should finish all 6 cycles before I consider having any further surgery. Whereas the gynae and bowel surgeons believe I should have surgery before I have any more chemo. The outcome of the MDT was that it was up to the ‘patient’ to make the decision. Yep, time to get the crystal ball out……..!

So yes, please do seek a second opinion. It gives me peace of mind to know that I’ve done everything possible to help my current situation. What the last few years have taught me is that you need to be your own ‘project health manager’ and that you need to fight your own corner. One of the best pieces of advice I received was ‘don’t let yourself be bullied into accepting a decision’.

Please let us know how you get on if you feel up to it. In the meantime please look after yourself.

Liz x

Thanks for this Liz. It's made things clearer and I'm now ready for the fight. I just wish I hadn't initially accepted what I was told and challenged the surgery issue there and then but definitely going to fight my corner now.

Thanks for this. I'm definitely going to challenge things further

I am a fan of the author Christopher Fowler.  He had a shock cancer diagnosis last year of advanced cancer and following chemotherapy was told it had been unsuccessful. He then opted for a clinical trial  involving immunotherapy after which he was recently told the cancer had stopped spreading. He at once started work  on a new book. I think you should fight for all possible options. 

Hi Nico53

I have just read your post and it is a similar situation to what my mum is currently going through. Just a little bit of the background. Mum had endometrial stage 1B last June, hysterectomy. Chemo, radiotherapy. Histology came back clear. Fast forward to five weeks ago and gastric pains. Trip to A&E, GP, out of hours and a battle to get her to have a scan. CT scan showed fluid in the pelvis, cancer returned to the lining of the stomach, adhesion on liver and further chemo only offered carboplatin. I have had to speak to oncologist for trials other alternatives and been told that it is estrogen sensitive. I have looked into hormone therapy as can’t have immunotherapy. 

did they let you know what type it is, hormonal or genetic  yes ask for a second opinion. Don’t give up. 

Dee

I agree Liz, among the shock and tears of mum having the diagnosis. I was in the room and fought with all my might for alternatives, you have to ask for things to be done 

Sorry just to add to be told that the initial chemo hadn’t really worked was heart wrenching. I have spent so long researching and arming myself with information for consideration

Thanks Dee.  Unfortunately my cancer is very advanced. I have had my consultation with one of the surgeons as I requested and what has become clear is that I have not been given all the relevant information from the outset, including how far it has spread. I do understand now at least why surgery wasn't an option. At least I have one more option on chemo which is something I suppose and am hoping to start this straight after Christmas. It's really hard to accept the position but will continue to fight as far as I can. It's good to know that there are some lovely supportive people out there and thanks to everyone who has taken the time to read and respond.