Confusing next steps

Chris89

Hi All,

My mum 69 was diagnosed with CRC stage 3 almost 5 years ago and she underwent surgery and chemo. Immediately after the first six months the cancer spread to her peritoneum with around 9 new tumors and one got as big as 13cm in 2 months.

Then we changed the oncologist that she had, as he said that it was a lost cause and we found another one that she had experience with immunotherapy. She also suggested to get tested for Lynch syndrome where my mum came positive to it.

Before the keytruda treatment my mum had approximately 800 CEA and after 4 treatments CEA was dropped to 10. Although the tumors seems to got bigger this was characterized as pseudoprogression.

Three years later with non stop immunotherapy treatment, every three weeks and until this point with stable disease (tumors we're staying at the same size), the tumors are starting to decreasing (Yay) and in matters of months basically most of the tumors in peritoneal area are not visible in CT anymore only 3 of them and the biggest one above is now 1cm.

However the last year her CEA level are starting to climbing again and last summer we learned that she had new metastasis in ovaries. After biopsy proved that is a metastasis from the original cancer and not a secondary primary cancer and one of the ovarian tumor starting decreasing that she should continue with the current treatment and check again in the future when the other ovarian tumor is currently increasing.

I think I am getting paranoid but shouldn't we go more aggressively in her treatment? The doctor insists that the treatment is not working for that specific tumor because of a cyst around it but any research or medical paper that I've read doesn't support that claim.

I am afraid that the tumor will get much bigger and become unresectable and we will lose our window to act.

Is it better to be patient and wait or should I start looking for second and third opinions?

Apologies for the big post

NewHere

Welcome to the board, sorry you have to be here.

It sounds like your Mom has done really well so far with the immunotherapy, which is awesome to see.

On the one tumor growing/one shrinking they may be letting the treatment kick in some more. Did they give any reason as to why these tumors may have started and then responded (in the one tumor case) to shrinking? That would be something I would be asking.

In terms of being paranoid, this is cancer and your Mom. You are not being paranoid, you are being concerned. There is no down side in pursuing other opinions or getting solid answers on this. I ask all the time (a) if I wait a bit, am I forgoing my treatment or something that should be done (i.e., a window like you describe) and (b) what is the next move if this is not working. Right now I am in a drug trial and we are already planning the next moves that I probably will have to do in a few months.

So bottom line, try to keep calm and not panic too much (going through this does that to all of us), but get your answers and research going to make sure you and your Mom are comfortable with what is happening.