Our Journey to NW in Chicago on Tuesday

Here's what we found out Tuesday at Northwestern in Chicago. Saw all 3 tumor board drs: Surgical, Hem/Onc and Rad Onc last. Very impressed by all 3. No surgery in hubbie's future per both our local hospital in Milwaukee and there. Told us even though it's small (1.4 cm) base of tongue with 2 lymph nodes on same side, the tumor is somewhat near his hyoid bone and could have a detrimental effect on his swallowing if they cannot get clear margins. Then he'd be left having the same amount of rad/chemo as he would have without the surgery. So far both facilities concur on the no surgery. Both also concur on 7 weeks (35 days) IMRT rad with 7 once/weekly Cisplatin chemo. Over 90% cure rate so they all say. Tumor board meets on Monday on his case. The MAIN reason we went there (which my first topic explained) as they are the closest center with Proton radiation and both the Hem/Onc and Rad Onc guys say they are not convinced that Proton would give him any less side effects than having IMRT would. I asked Rad Onc about the amount of greys. More to BOT, less to left lymph nodes and less still to right side of neck. Will try to avoid his front throat area. We do NOT want to go back to our Milwaukee center after meeting everyone at NW. It's like night and day in their level of care. Milwaukee didn't even talk about his teeth and I already had a call from NW yesterday for him to get signed off with our local dentist with fluoride trays which he did this afternoon. He has to just go back and pick up the trays and fill his prescription for them (local Hospital said nothing about his teeth). Just coincidentally he had a cleaning and bite wings last week and all was good with no cavities, but again, I just happened to book that appt 2 months ago before we even knew he had cancer. We both just felt like the drs at NW spent SO much time with us on Tuesday (and believe me I've been all over this board for months reading/researching, etc.) and we felt comfortable with the answers we got.

However, we asked about Proton and kept getting the "we don't think he'll have any worse side effects with the IMRT," and BESIDES the Proton center is booked out until mid-October.

So that was my "aha" moment as I did call Mayo a few weeks ago and they couldn't even get us a consult for 4-6 weeks, much less get treatment. NW got us in with their 3 drs. in just one week.

Hubbie won't be working his part-time job through treatment (his boss was also great and said just come back when you're done). I also only work 2 days/week part-time 10 hours/week.

Our Milwaukee local hospital is only 35 min from us but my gut after meeting their 3 docs 2 weeks ago and literally spending ONLY 5 min with their Rad Onc was not a good one. All he said to us was "you're going to hate me by the end of all of this."

The Rad Onc we met at NW yesterday literally spent at least 35-40 min with us, answered my numerous questions and was pretty professional and calm. But somehow, still I feel he WOULD be a great candidate for Proton and they're just too jammed. Not sure how to get past that?

Also both our local hospital Rad/Onc and NW's asked a very interesting question of my husband. Has he felt that the lump/lymph node in his neck has gotten any smaller since he first noticed it (late April); met with ENT May 30; US June 15; CT June 27; Biopsy June 29 and PET July 19? My husband even mentioned to me it seemed a bit smaller from his perspective. He got "scoped" 3 times at NW so they could literally see it is not any bigger (thankfully--this "process" has gone slowly as no one could get him in any earlier for his PET scan and thankfully it had not spread anywhere besides BOT and 2 left neck lymph nodes). The NW Rad/Onc said sometimes your body's immune system starts to "fight" it (even though the cancer is clearly not going anywhere without treatment). But I thought it was interesting both Rad Onc's brought it up.

If NW is our only option because Rochester is 4 hours each way and they can't even do a consult for 4-6 weeks, well IMRT at NW Warrenville 30 miles west out of Chicago it will be. When he can't do the drive or doesn't feel like it (2 hours each way) I will be going with (particularly on his weekly chemo days). Or we will be staying over at a hotel in Warrenville of which there are many I'm sure affiliated with NW as there are with Mayo.

Appreciate everyone's comments to date. Russ, you're amazing for everyone here!