The C Word - Tumultuous Tumors

It’s been rather frustrating on several levels this month.

First, we are trying to convert our medical insurance over.  With George actually retiring at the end of this month and going on Medicare, I need insurance.  I applied at the end of February, but have yet to be approved.  Under George’s retirement plan, my choices for self-paying insurance are six variations of Blue Shield.  I do have a qualifying event and, according to the middle-man I will be covered, getting the right paperwork filed to get it done by the first of April has proved trying!   It may be just a single word or two that needs to be changed in the qualifying letter, but until we hear back from them, we are sitting on a bubble waiting! 

Then, for the first time ever, the current insurance company didn’t approve the CT scan on time.  They apparently needed some questions answered.  As a result, we had to push the date for the CT scan a few days and thus had to push the oncology appointment out as well.  Not sure why the need for additional questions - - just insurance companies being insurance companies and trying to dictate the need for testing I guess.

George had a negative reaction to the contrast solution.  He spent a lot of time in the bathroom and in some pain is it moved through. He believes he is also now lactose intolerant.  He tried Lactaid but had the same reaction as milk.  There are certain things he can take that have some milk in them and don’t bother him.  But cereal with milk… no no.  Ice cream - - no no but he will probably just not have it very often.   So sad that the things he loves are gradually off the table, literally.  No steak, little cheese, no milk/cereal, no pizza.  Not that he can’t eat them – but there are definite consequences when he does.

And then there is today.  The oncology appointment.  While the results weren’t a total surprise, they were disconcerting.  When Dr. G says, “Well, we may not want to take a watch and wait approach anymore”, it takes you aback.  The reason for this is the fact that some of the spots on his lung are now big enough to biopsy (meaning they are now bigger than 1cm).  A biopsy may be in order to determine if they are, indeed, related to the PMP.  The ones in his belly are growing – which is not unexpected – but are growing at a faster rate than the previous scan-to-scan results.  He has one that is slightly larger than a golf ball (a bit over 2” in diameter) and another just slightly smaller than that.  The growth on several of the tumors was ½” or greater over six months time.  Prior to this it was more like ¼”. 

In reading the scan, it also appears that they do see anomalies in between the loops of small intestine and some that has adhered to the abdominal wall. 

And then, we worry, if this is what it DOES show – then what are the things it does NOT show because we know that is always the case.  There is more than shows up on scans.

Dr. G says we need to plan to get more information in order to make a more definitive plan.  What, exactly, does this mean?  For starters, he will go back to Foundation One to see about an additional test being done to the tissue samples they have.  I think it was called a Tumor Mutation Burden (TMB).  This might be able to tell us if some sort of immunotherapy would slow or stabilize.

Secondly, he will gather together information from the scans and also Dr. B and take George’s case to the GI tumor board next week.  He will discuss the case with the other doctors and get some take on what they feel can be done.  Do we try to do a biopsy on the lung tumors?  Do we plan for a debulking surgery (also known as CRS)?  Do we try a systemic chemo or immunotherapy to see if it stabilizes things?  What’s the best course of action?

On our end, we will have to weigh any answers that come our way.  We may decide to seek another opinion and have records sent down to the PMP specialist in San Diego to see what he says. 

Our decision on what to do will have to be carefully thought out.  There will be definitive pros and cons to each and every “solution”. (Of course, that is assuming we have more than one choice.)  I am sure it will be a difficult decision for us to make. 

I am trying to remain positive.  It is sometimes not easy, for sure.  I am incredibly grateful that we have avoided the emergency room for eight months.  But I am reminded that it has been 20 months since the last surgery – and that is how much time we had between the first two surgeries.  We keep waiting and wondering not if but, when will the floor fall out from underneath us. 

No options are appealing.  Biopsy? Surgery? Chemo? Immunotherapy?  Do nothing?  One or more of these will be our choices to select from.  Every one of them will affect us in some way or another.  We must prepare ourselves for whatever lies ahead.

More praying…. More thinking…. More hand holding… More talking… More praying…