Chemotherapy (is what they wanna give me)

I just got a call from Dr. A.  He said (as I suspected) that the mass in my tongue is larger than he hoped, which means that we'll have to go the chemotherapy/radiation route rather than surgery/radiation.

The good news is that the biopsy was positive for the P-16 marker, which indicates that the cancer is HPV-related, and that the prognosis is still good.

So, the treatment will be longer and harder than I was hoping, but I still have a good chance to come out cancer free.

Next steps are consultations with the radiation oncologist and the medical oncologist (chemo).

T4aN2b

Dr. Awesome managed to get my MRI and PET/CT scans moved up from February 6th to yesterday.

I got the results of the MRI today (with an online viewer for the scans -- very cool).  From my layman's reading of the report, it sounds like the tumor in my tongue is very large (4cm in the largest dimension). The report closes with:

These findings are consistent with stage T4aN2b squamous cell carcinoma of the oral tongue

T4aN2b means (from www.cancer.org):

T4a: Tumor is growing into nearby structures. This is known as moderately advanced local disease. 

N2b: The cancer has spread to 2 or more lymph nodes on the same side as the primary tumor, but none are larger than 6 cm across

I felt a slight chill and a wave of nausea as I read this. I'm hoping to talk to Dr. A soon and find out exactly what this means, but I'm pretty sure it's not good news.

Biopsy #2

The biopsy went well - they verified the primary site, did not find any other suspicious sites in the esophagus, stomach, lungs, etc.  I don't know if they verified the P-16 markers or not, I'll try to talk to my doctor today and get the details.

Thanks to Jane for taking such good care of me before and after the procedure :)

more later...

Dr. Awesome

I got to meet my surgeon at UCSF yesterday, who will be overseeing my treatment there.  He seems scary smart, super dedicated, and determined.  God complex?  Maybe, but at this point I don't mind.  Good hair, too.  I've taken to calling him Dr. Awesome.

He identified the primary cancer site -- extreme back of the tongue, on the left.  It's the same spot that my ENT had said was the likely candidate.  Also, it turns out that the original biopsy was inconclusive for the P-16 protein, which means that the cancer might not actually be HPV-related after all.  P-16 is a good thing, as it indicates a better prognosis.

I'm having a surgical biopsy of the primary site tomorrow so they can take a piece of the tumor and explore the adjacent areas for any signs of other abnormalities.  It'll be the first time I've ever been under a general anesthetic, or had any kind of surgical procedure (unless you count tubes in my ears when I was 3).

Dr. Awesome laid out two possible courses of treatment, depending on what we find with the biopsy and the MRI and PET scans.  (and regarding the insurance, he said "oh, they'll pay for it")

The first option is surgery and a lighter course of radiation.  They'll take out the primary tumor (with a surgical robot) and take the lymph node with its two metastatic tumors.  This sounds preferable, as radiation can have permanent effects (dry mount, trouble swallowing, bone damage).  This option is open if the PET scans shows that the cancer is limited to the sites we know of, and the lymph node tumors are well contained (i.e. the cancerous cells haven't leaked out).

The second option is chemotherapy and radiation (higher doses than option 1).

Emotionally, we're all feeling the stress in different ways.  I think my doctor visit yesterday increased the reality of the situation for me.  And the biopsy tomorrow is taking a toll on all three of us.

We've been telling Jack as much as we c (as appropriate for his age), and he's expressing his worry and his fears really well.  Jane's been doing a wonderful job talking to him about it, and he asks me every day how I'm doing and if he can do anything for me.

Jack's school has been wonderful too.  The school councillor, Sarah, send us this email yesterday about her talk with Jack:

I wanted to share what a wonderful appointment I had with Jack
today. He shared with me his thoughts on cancer, what it is, and also his
insight into how "when you're in a family you understand how other family
members may be feeling at different times because you really know them"
(those were his sweet words). We talked about how he recognizes Hans may
not be feeling up to doing certain games (tickle game especially) and that
Jack can be a social detective and know that maybe his dad is not feeling
up to active games before asking to show he was thinking about his dad's
thoughts and feelings. We talked about how he could show that he
understands (not by accepting "no" to his request to play) but by asking a
question that would let Hans know Jack was thinking of his feelings like
asking to read his dad a story, or do a quiet board game, or give his dad a
snuggle. He also shared that he has a lot of worry, and when I asked him if
sharing with people he knows love and care about him (he named you both,
me, and Ms. Taylor all as safe people) is helpful he said yes. I asked if
he would like to visit with me to share and he agreed it would be good. I
will check in with him tomorrow too, as I know this is a big day for your
family. Please let me know how today goes and if I can be of any support
for you too at this time. I would love to have a check in with you in
person too once you have some clarity and insight into treatment schedule
and the like. My heart goes out to you. Thank you for reaching out and
trusting me to work with your wonderful family.

I've been touched and humbled by all the love, good wishes, and prayers being heaped upon us.  So many offers of help and comfort.  Thank you all, and keep it coming :)

Big Love,
Hans

The battle begins (and not the one you think)

I just got a rejection letter for my PET scan from MedSolutions, a company I've never heard of which is apparently affiliated with my insurance company (Aetna, via Starmark, a wholly-owned subsidiary of Trustmark Life Insurance).  I'm in the process of moving to UCSF Cancer Center for my treatment, since they're one of the best cancer treatment centers in the country.  If I'm lucky, they'll have more pull with the insurers than I have and I won't have to sue the bastards.

The part that really burns me is that I have the means and ability to fight for the treatment that my doctors think is best.  What happens to the people that don't have the knowledge, the means, and the ability to question and to fight?

Why do we still have these for-profit middlemen in the insurance business?*