What questions to ask at 1st meeting with Oncologist when surgery is not an option?

Hi Nellybean,

Diagnosis is hard news to take. Even if you suspect, you're never ready. 

Your oncology consultant and team will have a plan with a first course of action to take. They will have secondary etc plans. 

The consultant will explain the plan. Be prepared for them to be brutally open about the potential side effects. They have to disclose everything. 

There will likely be more scans and tests. Not scary but take waiting time. 

When I use you I mean you and your husband as one whole. 

We are second time around. Both initial consultations a specialist nurse was in the room with us and we had opportunity to talk to them while trying to get out heads around things. 

The support is there. Or here. 

Need to update on mine later. There are good days and others. 

Fingers crossed you get a positive treatment plan tomorrow. 

Keep breathing. X

Hi Nellybean

Sierraoscar gave some great advice.  

I am non operable and it was initially disappointing when I found that I would not be a surgical candidate.  I finished FLOT and I am now on paclitaxel and Ramucirumab (Cryamza).  You will hear a lot that every cancer is different and will respond in different ways, this is true. Because of this fact knowing the exact trajectory is almost impossible, just be prepared to adapt.  Dont go down internet rabbit holes it will scare you and give you stats that will make you fear the worse.  

My advice would be to listen actively with the oncologist, write stuff down as you will forget and kick yourself, ask questions and dont be afraid to share your fears.  Its important to build a relationship with your Oncologist and medical team, if you do not have 100% confidence that you are on the right path you can ask for a second opinion.  I have been really lucky with my care but aware that its not the same for everyone. 

You and your husband are still in the fight.  Your Oncologist will talk you through the next stage, chemo, immunotherapy, radiation or a combination.  As stated you will have tests which will help decide the best course of action and when you start to check on how effective it is.  

it cant be underestimated how important it is to maintain an appetite, food is vital to staying strong and being able to withstand whichever treatment you have.  if your husband can eat well, sleep well and maintain positivity through this journey it will make a big difference. In that you are on this forum already tells me that he has someone in his corner, this is priceless.  

You and your husband will find this site invaluable, you are not alone. 

Regards

Richard

Hi

It's second time round for my husband and is on palliative care and immunotherapy treatment, you would think it wouldn't come as a shock second time round but it does when the news is especially not good, I recorded our consultations on my phone so I could listen back because you do miss bits here and there as your mind is trying to take in the news 

Good luck with everything 

Jenny

Hi Richard 

Can I ask how you received FLOT without having surgery? We have been told my husband is unable to have this because he is not a candidate for surgery.

Thanks

Sure, 

I was given FLOT as it was hoped that I may be able to have surgery after receiving it.  However after having FLOT whilst it stabilised the tumor it was decided that due to the fact that it had spread to the lesser curve of the stomach surgery was off the table in favour of weekly Paclitaxel and Ramucirumab. In my case immunotherapy was not an option.

When I met with the surgeon he explained that in my case the margin was just not there.  He went on to say that the concern for me was that given the risk that he could not get all the cancer, my body would be too weak after for some time and during this time chemo would not be possible.  Its hard to feel positive when you are told that surgery is not possible but there are still some positive stories out there.  What is vital is eating and trying to maintain a healthy apetite, my oncologist could not stress this enough and if your husband is struggling ask your GP to prescribe shakes to keep on the nutrients and weight.

Hope that your husband is feeling OK and if you need to ask anything else just let me know

Regards

Richard

Thanks Richard, my husband is 63, otherwise fit and healthy and eats normally. Unfortunately his diagnosis was after it has spread into some lymph nodes above his collarbone. Therefore, for him surgery is also off the table. It does feel such a blow.

He has no symptoms really other than a mild cough occasionally throughout the day. 
We were told he had Barrett’s after the endoscopy but due to having a hiatus hernia op many years ago he has never felt any reflux. Therefore, he’s had silent reflux doing the damage for many years.

I do focus on the positive stories such as Noddy Holder and there is Davek on the cancer research chat who has survived for 13 years without surgery! 

Best wishes for a positive outcome and thanks again for the reply.

Jo