Consult at U of MN: Reality Sucks

News flash: you really do NOT want to be an "interesting and challenging case" as defined by the Mayo Clinic.

Thursday was hard, and not what we expected or had planned for.

We went to the Univ. of MN/Radiology-Oncology today for a consult/second opinion and spent from 1:30 to 4:30pm at the U of MN hospital with the great (and patient, with good senses of humor!) duo of radiologist/oncologist's: Dr. C and resident Dr. T. It's yet another 'team Matt' - check out the photos right.

Before I tell you about Thursday, I wanted to share out just a note about Wednesday - it was an up/down one for us in that Matt called Dr. W (our quarterback) to see if results had come back for the test for the HPV virus. They had, and we got a copy of the pathology report from the Mayo Clinic/Pathology dept (ergo, "interesting and challenging") and yes the HPV virus is present in Matt's cancer and NO they too did not see/find an indicator as to the primary source of cancer. They recommend that Matt get a tonsillectomy even though the tonsils do not show cancer (the data about this type of cancer says the tonsils are most suspect.) Also, the idea of the cancer being partially caused by the HPV virus really freaked us out, but we have learned since that is a minor detail and actually is good news as there is data that says radiation therapy can be more effective on cancers with that characteristic.

So back to Thursday and the U....

We - and Matt in particular, as you all know - are the consummate researchers and info-gatherers. We arrived with a 7 page (I do not exaggerate) list of questions (90) about the cancer, treatment, etc. etc. as crafted by Matt over the last 48 hours. I thought it might be overkill but when we were done, I was SO glad he had done all of them - we learned a ton on many important fronts.

They answered every single one of Matt's (and my) questions - wow, we couldn't believe they could give us so much time! and helped better frame Matt's situation. With that being said, it was some really hard reinforcement of much we have heard before, but which hadn't really sunk in....
A couple salient - and unfortunately all heavy - facts we are dealing with today:

1) Matt's case IS very unusual and concerning (interesting to the drs which is good and bad) due to his age (YOUNG!), health, lack of cancer markers but mostly due to the size of the tumor/pomegranate, the speed of its growth and the fact that all the biopsies to-date have came back clear. They are actually going to present his case to the U's Tumor Board (see earlier post) tomorrow!!!!! It's THAT interesting, baffling, and extreme.

2) Matt's case and specifically this cancer (and the size of the infected node) is "stage 4" (NOT good) and they would start radiation tomorrow if they could. While the PET scan will help (hopefully) tell us more and allow/provide reassurance that solely radiation therapy will be sufficient, the drs told us they were both leaning towards BOTH radiation and chemotherapy.

This type of cancer is aggressive and they say it is much better to deal with it now when it is involving fewer cells (millions) than when bigger (billions of cells). Dr. Cs quote was "we want to treat the cancer when there is the least amount of burden on the tumor (cancer)." Dr. T's sobering comment (when we asked about waiting or only doing partial radiation at this time (assuming continued unknown primary), "you do not want this cancer to come back pissed."

3) One of the additional reasons this is all a big deal is the complexity of the head and neck, and all the important/delicate glands, muscles, etc. etc. which are all packed in above your shoulder blades and below your eyebrows - e.g. behind your nose, eyes, your ears, salivary glands, tongue, sinuses, tonsils, etc. etc. It's going to be hard even to target the cancer even if or when they are able to figure out the source. You are radiating (which is TOXIC) some really important things, for lack of a better description.

4) I know I wrote this before but for us, it bears repeating: Radiation therapy for head and neck cancer - especially when combined with chemotherapy! which is how this duo is leaning - is not for sissies. I mean it's REALLY not for sissies. Actually, it sounds like something we won't be able to joke about much, at all.

If and as we move forward, there are many variables as to how they do the radiation (it will be at least 6 1/2 weeks, 5 days a week) but the bottom line is Matt will be a hurting puppy starting week 2 of treatment, and it will only worse....It will make for a very difficult January assuming/if we start treatment right after the PET e.g. in early December.

These doctors say Matt will probably be out of work for 3 plus weeks during the end of the treatment - yikes. [Matt says "Don't bet on that!"] This is more extreme than that which Dr. H said - hmm. Also (and we will get other opinions about this), the U team would recommend getting a stomach tube - which they say is not that big of a deal - from the get-go, to ensure there is a way for Matt to stay nourished for the whole treatment.

5) We talked more about survival rates (estimates only of course). We learned they believe Matt's chances of survival are 50/50, after five years, this given the size of the node (and ergo, stage of cancer). FYI, the basic stats for this cancer are 85% 5 year survival rate, with tumors at stages 1 or 2. Of note, given Matt's general good health and age, the chips are happily stacked in his favor so we are holding onto that....

We learned also some more about the U's facilities vs. Methodists', talked a bit about other places we could go to get yet more opinions and/or treatment (e.g. to places where they deal more often with this type of needed (complicated) radiation) and so are thinking about where Matt would get the treatment. No decisions needed there yet but as reality sets in we are considering all that too.

So. Did I say that yesterday was hard and really depressing? Oh yeah; I kind of did already.....Wanted you all to know as the support of family, friends, work colleagues and EVERYBODY really does help. (Don't get mushy with Matt however!) And we will need even more as this unfolds. I think the next 2 months are going to challenge us - and Matt in particular.....

That's it for today. We will post an update when we hear what the Tumor Board recommends or says, hopefully early next week. This as we approach final countdown for the PET scan (Nov. 23 but we won't hear results until Nov. 30).

Thanks to you all....