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Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

SURGERY OR CHEMO ADVICE FROM THOSE THAT HAVE KNOWLEDGE AND EXPERIENCE?

sukura
Posted by

My Father has an asap decision to make. His 6 months down the line from finding the shadow on the scan. He just had two rounds of chemo and the oncologist called to say its not working so they have cancelled further chemo. we were told inoperable a few months ago and now a candidate. Slightly confused... but what we want to know is the real success rate. His scared and not sure if he should chance immunotherapy first?  But the surgeon said his concerned we may miss Windows to perform surgery if the immunotherapy does not work post the genomics testing. He suggested to do the immunotherapy post surgery. 

I read here in one conversation theres a low success rate of surgery, but the surgeon was so confident and never told us this. What do we do? I would hate to guide my dad in a direction that leaves him in pain and suffering. we are torn.

Any help most grateful for.

hurtandconfused981
Posted by

Hi Sakura.

I've noticed some of your threads/comments pop up in my emails but I've not had chance to reply to any of them until now and I know this community can be on the more quiet side. Sorry for that.

General consensus and evidence suggests that lengths of survival times post surgery are not great but if you risk it and it goes well then it's good. Which goes without saying really! There are some personal anecdotes on these forums of some people living for a long while plus it seems to give a better quality of life which would be one of the reasons your surgeon would be recommending it.

A quick google brought up initial research papers from the first phase of the MARS trial which you may find interesting.

https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-019-3692-x - this takes a look at some participant responses which I think you may find helpful/reassuring.

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(11)70149-8/fulltext - these were the results from the first trial of MARS (they are now at MARS 2). I think this was a more aggressive operation than MARS 2 so it's worth bearing that in mind when reading the results of the study.

I'm not sure if there are more recent papers for MARS 2 specifically but if you have a google you should find it.

I know from my own dad that he still has flare ups of pain from his old VATs biopsy site but whether that is because he has growth around there now or not we're unsure (he is due another scan to see). He has not had the surgery and his opinion is still that of not going for it. That was based after conversations with his own care team.

None of us (well, I would assume, for the most part) are doctors so we can't really tell you what will happen or what is best. I guess my best advice would be that it may be worth putting trust/faith in the team that are working closely with him. As for it still causing pain post surgery? Yes, from what I've heard the surgery does have some after effects but I suppose it's manageable. I would like to add that even though cancer and major surgeries are a different ball park... Pain can be a side effect of ANY surgery as it's a trauma to the body and that goes for even what some people consider more "minor" surgeries.

I would have to agree that from my own personal research that there does seem to be a small window for the surgery as it's a very aggressive cancer. Most surgeries are complemented by an adjuvant (such as chemotherapy or immunotherapy). I believe even this surgery is? Or at least I think it is on the trial. Someone who has had the MARS trial may be able to correct me there. So I think your doctor would be right especially if he thinks that your Dad is a good candidate.

If you really want some more reassurance or are finding this journey confusing then please give Mesotlhelioma UK a ring. They are really good at this type of stuff as they are nurses that specialise in it especially. They are also far more qualified than I to offer an opinion!

Sorry if we can't really be of much help but we can't really help you decide!