Our Journey to NW in Chicago on Tuesday

Swoosh13

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!

wbcgaruss

Swoosh, thank you for the compliment, it makes it worthwhile to help others and hear a kind word.

Swoosh here is something to look at as per Proton Therapy. Another opinion. This doctor deals in prostate cancer but still cancer. I will put some credentials and a link to his full profile and a video of his view of different radiation modalities. Every little bit helps.

Mark Sholz, MD

A double board-certified medical oncologist, Mark C. Scholz, MD, serves as medical director of Prostate Oncology Specialists Inc. in Marina del Rey, CA, a medical practice exclusively focused on prostate cancer. He is also the executive director of the Prostate Cancer Research Institute. He received his medical degree from Creighton University in Omaha, NE. Dr. Scholz completed his Internal Medicine internship and Medical Oncology fellowship at the University of Southern California Medical Center.

https://www.prostateoncology.com/prostate-pros/mark-scholz-md/

Proton Therapy, IMRT, and SBRT | Mark Scholz, MD | PCRI

https://www.youtube.com/watch?v=i1US-dIc9ho

The Pros and Cons of Proton Therapy | Mark Scholz, MD | PCRI

https://www.youtube.com/watch?v=_Z1SbFNSlTs

Take Care, May God Bless & Watch Over You

Russ

Swoosh13

Russ, thank you, I will watch these. The one you shared last night on Mucositis was fascinating.

Quiet

Swoosh, I am glad you were able to discuss with doctors. NW sounds like a good option from what’s your wrote!

Regarding time for treatment, docs can let you know how urgent. For example, I initially went to an ear nose throat doctor in August for a swollen lymph node and was eventually recommended to go to a local cancer center. I spoke with the local cancer and was told my cancer was inoperable and they offered IMRT and some clinical trial options. I found out about proton and asked the doctors if I had time to get other opinions. They said yes and I also found out no local proton center. I then spoke with doctors at several institutions that offered proton and even heard from one place that thought surgery was an option. I eventually started proton in October.

I was worried about how long it was taking, but was also worried about the after effects of treatment. I also wanted to make sure I was talking to doctors that had experience with head and neck cancer (some proton places focused on breast cancer and prostate cancer treatment and didn’t have much experience with throat cancer).

All options being told to you should be good for treating your husbands cancer. The potential upside for proton is if they are able to do less radiation or more targeted radiation so less impact to all that other important healthy stuff in head/neck. That is a benefit for long term because radiation has long term costs. You don’t avoid all those with proton, but hopefully have less collateral damage and not impacting as much. 70 gy with proton still going to have same effect on tissue as 70 gy with IMRT-just proton targeting specific areas. Some docs are even considering using way less radiation (like 30 instead of 60/70) for certain types of tumors, which will be amazing for patients if it also gets rid of the cancer.

Swoosh13

https://csn.cancer.org/discussion/comment/1708030#Comment_1708030

Quiet, thanks for your comments. Basically we were told NW was booking out to mid-Oct for their Proton radiation care and that’s why we went in the first place. We do not have time to wait that long and they made it sound like the potential side effects would be the same with IMRT vs Proton.

Meanwhile we went back to our local cancer center Rad Onc on Fri with some phone questions and he literally called back in 10 minutes. VMAT (a more targeted version of IMRT) and we also discussed the greys in more detail.

We cancelled tomorrow’s trip to their Proton Ctr as we don’t want to get the same mid-Oct answer and waste their doctor’s time or ours. Thinking perhaps a virtual visit “could” work and that will ultimately make our final decision.

Are we disappointed, yes? Is our local cancer center a great option, well on many other levels it is. Home every day/night. Has me right here at all times as hubbie’s caregiver. Ironically we live in a very rural area but have a new ER, UC and hospital 5 min from our home should something unusual ever happen during his treatment. And our local cancer center also has an ER 20 min from our house.

I will call NW tomorrow morning to see if we can do a virtual visit with the Rad Onc we were supposed to see in person and if he also concurs mid-Oct or not Proton at all, well we’ll be staying local and will have made peace with our options.

Diogenese

The good news and bad news about what we are going through is that advancements in treatment are improving exponentially. It is almost a full time job keeping up to speed, but doing so may save/prolong your life. Just improving the quality of your life makes it worth while and this forum is one of the most worthwhile since most of what shows up here benefits most, if not all of us.

Perhaps the best thing about this forum is that it’s the involvement of all of its participants that makes it work. Thanks to those of you who have become so knowledgeable through your own trials and tribulations, for sharing such hard earned knowledge.

It is incumbent upon us newbies to pick up the slack as we become increasingly more knowledgeable. Let’s keep this site a worthwhile to visit.