Dr. Thompson 2.0

Hey there!  I'm so grateful for your patience!  I will try and tell you all about our visit with Dr. Thompson (oncologist) this afternoon.  There is still much we don't know…but we do know a little more than we did this morning.

I caution you all…they are sending me to the sarcoma clinic at Vanderbilt where we will find the most up to date info on treatment, prognosis, progression, genetics, etc.  He cautioned us today to chill until we've seen them, and we have time to do that.

So – it is a sarcoma.  It is low grade, meaning it isn't growing quickly or metasticizing.  It is stage 4 – only because it has multiple tumors and involves multiple organs (liver, pancreas, duodenum, and I think gall bladder – don’t quote me on that).  He said staging isn't a big deal here because a stage 4 with some kinds means death is imminent but in this type (and others) there could be many years and potential cures before that happens.  He has been treating a stage 4 for 26 years and the individual is doing ok. So - don't let the stage cause you anxiety.  There will be potential problems that they will watch for and be ever vigilant about – i.e. Liver failure, digestion issues, etc. that they will work to manage as things go along and they can “de-bulk” a tumor if it gets in the way of bodily processes.  

The PET scan showed that the ct scan was correct – no other tumors were found, although my lymph nodes in the abdomen region are pretty large.  That is one thing we will be addressing with Vanderbilt. 

The importance of knowing that this hadn't metasticized from another area was great for me – a relief!  It appears that the original site is in the connective tissue that holds your internal organs in place – in my case, the mesenteries.  He said he'd never had a patient with this type of presentation 😜!  Again, it will be something we talk to Vanderbilt about!

So – they were able to do a LOT of research on the cancer and my genes.  It appears that there is a mutation on the TP53 gene – the gene that is supposed to inhibit cancer formation.  I asked, “how can we turn this on?” To which he responded, “Good question!  That's why I want you to see a sarcoma specialist at Vanderbilt.”

The TP53 gene mutation may be inherited.  The only one in my family with cancer, that I'm aware of is my Dad (prostate and skin) and my grandmother Pehrson (breast).  It is possible that it may have come through that line, or even another, I guess.  I could have also acquired the mutation through exposure to radiation, chemical or some other kind of toxin.  It may be that Vanderbilt will be able to tell us more about that.  

He said that if anyone in his family had the inherited gene he would have all blood relatives tested (it's a simple blood test) but recommended everyone just chill until we get to Vanderbilt.  

So – you can google TP 53 gene, li fraumeni cancers, and parp inhibitors (which may be a potential treatment – maybe – depending on what Vanderbilt says).  Again, don't freak!  I've probably had this a long time and in no imminent danger of death.  The reading may cause you to worry, but let me get to Vanderbilt for answers.  If you have questions that you want answers for, don't hesitate to list them and I'll bring them up with the specialists.

This cancer doesn't respond well to chemo or even much better to radiation.  He said that he wouldn't recommend it for me, especially if it is just done because you want to do something and don't know what else to do.  The risks just aren't worth it, in his opinion.  Again, Vanderbilt may have more options.  

My next appointment with Dr. Thompson is in a month.  In another couple of months they will probably do another scan to see exactly what the tumors are doing.  It will tell them how aggressive they need to be.  And, if things go from my current state to downhill in the meantime (very, very unlikely) I can always head to the ER.

His office is making the appointment with Vanderbilt and will be calling me in a day or two with that info.  

I really feel comforted by all your fasting and prayers!  Thanks so very, very much.  I'm feeling pretty upbeat and really believe that things will be ok.  My goal, and Dr. Thompson’s too, is for me to stay healthy and strong, for as long as it takes!  There is a tremendous amount of research being done on this particular problem right now and breakthroughs are coming fast and furious!  It has been one of my prayers that the researchers will be lead and directed to find answers for my situation, and for all who have health problems!  I love you!