Correction on my last post. He's not getting treatment yet. He's hooked up with the radiation oncologist and they'll do a scan in the next few days to determine whether radiation to the brain should also be included. Also discussion about whether low dose chemotherapy should be applied while radiation is ongoing. But his appointment with the chemo doctor is still 2 weeks away. So I just reemphasized my concern about the slow pace of things. His surgery and pathology results were nearly 5 weeks ago.

I know you said a CCC is not an option but it really does make a big difference where a patient is treated, especially in complicated cases. I still say it would be a good idea to get them over to a CCC where a whole team of specialists will get together and discuss the patient on a case by case basis. They will all sit down and come up with a treatment plan together. This approach is what is used at the top CCC's around the country.

The top CCCs arent always convenient for every patient but there are free lodging places to stay nearby each one and also free airfare too. I just noticed you made other posts which said your friend already started their treatments. Your friend may want to check into a place to stay if their commute is an hour each way. There could be free places near their current treatment facility. Let me know if you need the links for the lodging.

If they already started treatments its doubtful they will get chemo as their appointment isnt for another 2 weeks. By the time chemo would begin, they would be half way thru rads. Your friend should call the chemo doc and tell them they need an earlier appointment, if necessary speak to the office manager or get on the standby appointment list. Im surprised their rad doc didnt wait until they saw a MO to start.

Wishing your friend all the best with everything!




PS.... A while back I sent you a private message (PM). Look at the menu bar that goes across near the top of the page. Click on the flashing envelope next to"My Stuff". Please make a signature when you can it will help us to help you. Detailed instructions are in the PM. Thanks!

As Christine mentioned, there are free lodging facilities. I have to mention American Cancer Society's Hope Lodge. I stayed at their largest in NYC with 60 rooms,12 floors, this past October/November for free. It has everything you need, expect no meals. Anyway, each floor had a kitchen, laundry, and sitting room, plus other amenities, services and entertainment. Staying at a similar hotel in midtown would easily cost $400 a night, and I worked in hotels in manhattan for 25 years, and can say this place was very nice. Anyone can stay, some as long as 6 months, even with a companion, which is preferred, as long as you live an hour away, even in other countries. They usually have them near top cancer cancers, about 26, throughout the Country. Good luck

Bilge,

I will affirm what Christine and Paul said about a CCC. I didn't think a CCC was an option due to the cost of lodging and travel but I was fortunate to get a room at Hope Lodge in Baltimore which is about 1.5 miles away from Johns Hopkins where I was treated.

I had an unknown primary SCC MO to the lymph nodes stage IV. They did a selective neck dissection and chemo/rads 6 weeks 30 rads 6 weekly chemos.

I can't speak highly enough of my team. They are tops in the field and took great care of me. Check out the link below. Maybe there's a hospital listed near you.

http://health.usnews.com/best-hospitals/rankings/cancer

Positive thoughts and prayers

"T"

Why are they considering radiation to the brain? Earlier you posted no signs of cancer anywhere else. I'm confused. I also agree these delays are unnecessary. I too would look for a CCC and QUICKLY.

Thank you all for your suggestions. If I were the one with the problem I'd be doing exactly as you recommend. I went to my friends house 2 days ago and talked seriously with him and his wife for about 15 minutes. My thrust was clear, they are getting bounced around between 3 doctors (surgeon, chemo, radiation) and he's the loser as it moves so slowly. My recommendation was that he call his surgeon right away (he has a followup appointment in a week) and ask him if he is confident that the cancer is/was only local, even though the pathology report said it came from an unknown primary. If he will not decisively say yes, then tell him you want to start the appropriate chemotherapy right away. He and the wife took me seriously but were discussing which of the two should make the call. I saw him briefly today, and he had nothing to say about what we discussed on Tuesday. My sensitive problem is that I cannot intrude too forcefully. Believe me, this is very front and center for me, but I cannot overreach.

In my discussion with them on Tuesday I said that if they went to a major cancer center like Mayo or MD Anderson or somewhere all the docs would be working together and there would be no delays. And his wife indicated that her friend had also suggested that they go to a major cancer center. But I don't think it is going to happen. They have established a good rapport with the radiologist who is smart and competent, and probably they don't want to throw that away. I'm afraid I need to leave the ball in their court, once again. They express appreciation for my caring and interest but never reach out proactively to me.

He's a friend that I've played baseball with for a couple years, but we've not been serious friends about the meaningful things in life. Ethnically different, different education levels, the common ground is not deep enough to encompass this easily.

PS. Thanks Christine for info re the flashing envelope. I will follow up.

David,
My sense is that the radiologist is ready to start radiation right away, but wants to be clear that brain radiation is not advisable, else he'd perhaps be doing both with each visit. I believe the schedule is for 6 weeks radiation. This'll start quickly, but the chemo doctor is a laggard both now and via reputation, and I'd consider my friend lucky if he started chemo within a month. It is sad for me to watch this. There is more I could say about history of treatments here (and with my friend's family) but discretion precludes it.

Im sure it must be very difficult to watch a good friend struggle. Its not the best situation. Im very glad you had a good talk with them and I do understand you are walking on eggshells. But...... being that you obviously care very much for your friend, you must speak up and be even more blunt. They need to understand this isnt anything to fool around with. Oral cancer patients can easily die when they arent treated properly. Oral cancers survival rate is only around 50% of all patients diagnosed will still be alive 5 years later. When I see someone who is bounced around like what you say has happened to your friend I see history repeating itself a few years down the line. I see a patient who didnt take their health condition serious enough and is putting their life in jeopardy.

I know its not easy to push someone who isnt in your immediate family to seek out other doctors but please think of it like this..... If this was reversed and you had a dear friend who knew you were making a life and death bad decision, wouldnt you be grateful to them for telling you? I would also refer them to this site for help.

Its great to have a rapport with a doctor. The best doctors dont have to be "nice" people, they have to be highly skilled. Good bedside manner helps but it isnt what will make a cancer patient well. How I wish your friends would spend just 5 minutes talking with me. I speak to oral cancer patients over the phone all the time. I will send you another message with some info to pass along to your friend.

Good luck!!!!

If they don't want to hear common sense from you perhaps you could offer my contact number and I'll speak to them. Bottom line...his life is in the balance and this is a horrible way to die and to watch someone die!

Bilge, you are a good friend and your intentions are the best.......But I honestly don't understand your assumptions.

Why do you insist that your friend have chemo? Not all oral cancer treatments incorporate chemo. If it's not medically necessary, chemo should be avoided because the side effects can be severe and prolonged. In fact, the Natl Cancer Institute's treatment guidelines for parotid tumors don't mention chemo at all: http://www.cancer.gov/cancertopics/pdq/treatment/salivarygland/healthprofessional

Why do you believe that your friend, his wife, his surgeon and his radiation oncologist are all incapable of making reasonable treatment decisions? Isn't it more likely that they have information you don't, than that you have information none of them possess?

The only thing that could make a cancer diagnosis worse would be well-meaning casual acquaintances second-guessing one's choice of treatment and doctors. It's good advice to explore the options, good advice to consult a CCC, but once you've had your say the decisions belong to your friend and his family.

Here are some ways to get your friend's back no matter what treatment and docs he chooses: Acknowledge the skill and determination he's demonstrated in getting that tumor out so quickly and finding that smart radiologist. Offer to mow the lawn, take the kids to the zoo, repair the porch railing or anything else you can do to ease the coming difficult weeks. Strive to be a source of strength and support, not doubt and anxiety.

Many clues in your post suggest that you are aware at some level that your interventions have probably become unwelcome. You mention the casual nature of your friendship, your sensitivity to boundaries, your uncertainty about your "role," the fact that your friend never sought your input and now has no news for you. Trust that small inner voice telling you to back down.

I don't mean to offend by any means -- Your friend is lucky to have you in his life and is going to need your help getting through this.