Hello, my name is George and someone told me that it might be helpful to find other folks who have been through what I am eventually going to experience. So, here is my story of the past couple months..


I noticed a small lump on my neck in mid June and after it was still there a week later I made an appointment with my PCP. The nurse or nurses aide made me feel a little foolish about it and I was still feeling that way when the PCP came in. She also didn't seem too concerned but ordered a ct scan "to be on the safe side". Scan was on 7/5 (Thursday).

I didn't hear anything until late Monday 7/9 and we were out of town visiting family. My PCP's office called to tell me the Radiologist felt that it was "unusual" and I needed a Biopsy. Since I wouldn't be back for another 14 days I left a message asking if the Dr felt that it was urgent or if it would it wait until I returned, she got back to me the next day and said it could wait until I returned. I told them when I would be returning because they said that they could schedule the biopsy.

So, after returning on 7/23 I called to see when it was scheduled and I was told that there must have been some confusion and they gave me a number to call and schedule it myself. I managed to get an appointment for 8/14 (Tuesday). My PCP contacted me Friday and scheduled an appointment for Tuesday 8/21 to discuss the biopsy findings. The report said "G3-4 Poorly differentiated unknown primary" and she said she wanted me to have a PET Scan that day, of course that couldn't happen because it had to be approved first by my insurer.

PET Scan Wednesday 8/22 and was told the report would be done and available by Friday but I didn't hear anything from my PCP until Monday 8/27. I had gone and picked up the report and disk for myself that morning we spoke on the phone and she suggested that I self refer myself to the Moffitt Cancer Center in Tampa.

I managed to get an appointment for Wednesday 9/5 and after the examination the ENT Dr said she felt that 6 weeks of radiation/chemo at Moffitt would be the best course of treatment and hopefully I could avoid surgery. Moffitt is nearly a 2 hour drive if there are no delays, accidents, construction etc.. after some thought, and an assurance from my ENT Doctor that Moffitt would be there for me if I needed them, I decided to get another opinion from a Cancer center closer to home.

I am scheduled to see an oncologist here on 9/24.. I haven't been given any advice about what (if anything) I could be doing or not doing while I wait..

So, that's where I am right now.. waiting, and you may have noticed from this post that I am really beginning to hate weekends.

George

I'm going to start with ((hugs)) ... and for your sake, I'll hate weekends too.

For what it's worth, though you can and should take the best treatment and doctors you can get, it IS possible for some places to set up your plan and then have it administered closer to home. I gathered that's what some of my fellow patients were having done (and something I might should have pursued further ... like you, the thought of a two-hour drive daily was NOT appealing, but the twenty minute drive was fine even with nausea or whatever) ... so go head and see them if you need hat second opinion. It won't hurt, and could help.

One of the lead moderators usually comes by to give fantastic advice, and I couldn't begin to do as good as she does, so I won't ... I leave things out .. but that's one tip I gleaned that might help you.

What else did it say about the actual cancer? Where is it located more specifically? Any nodes? HPV or no? Those are questions that'll be asked, and most of us have that in our signature lines. Not that we're medical professionals ... we're all patients like you are ... but it helps you see who's been through the same things with the same start point as you.Mine was surgery, clear, surgery because it came right back, and then the chemo and rads. But that was because the location was easy to access, side of my tongue. Even with that, they did a 'neck dissection' (which sounds creepier than it is ... they just go in and take out lymph nodes to check for cancer spread) and the surgery wasn't too dreadful (or I am just so fuzzy this far out that I don't recall enough). And there are therapists who help with muscles and scar and such. You CAN and will get through this! You've got a whole team of cheerleaders and supporters here now.

Thanks Kristen,
I know very little about the cancer, my Dr at Moffitt was waiting on the slides to see if there was HPV, the PET scan report I read said one lymph node left side and a mass that was possibly the primary located in the parapharyngeal space. I'm afraid that there may be quite a few more weekend waits ahead before I even begin treatment..

George

Better to wait and get it RIGHT, think of it that way?

I waited longer than I ought to have, but it's because we had no idea it WAS cancer. Once we did, it seemed everything moved a little too quickly. Time becomes very weird... I'd had a sore spot for months, and part of those months were being bumped up the doctor chain for treatment. Finally my ENT said, "It's not healing, let's just cut it out and give it a fresh start." He may have been thinking cancer, but he never said it, so I had no idea. But my biopsies were done while i was under anesthesia, so I woke up to more answers than it sounds like you have yet. So I just had my waiting at a different part. On the other hand. it was probably scary for my husband ... we went in for a tiny little thing and he gets that kind of news while I'm still blissfully sleeping it off! After that, I do recall a lot of 'hurry up and wait' follow-ups with oncologists, sigh. But at that point mine was determined to have been fully removed, so it was a different kind of hurry up and verify.

Still ((hugs)) ... waiting for anything except a holiday present is just annoying.

George,

Sorry you are here. Here is my advice, You now have cancer. This is serious situation. ALL OTHER THINGS are now on hold as you deal with this. You are YOUR primary caregiver. Find a group of doctors that 1) you are happy with and 2) will provide the correct treatment. Both are important. ENT, RO, MO are all important, make sure you are happy with them. Time is important, make your decision and don't look back. Moffet is as good as it get in oral cancer. By all means, IF it is feasible, just go there. All in 8 weeks 40+ trips.

Treatment can, and often is brutal. Plan on 4-6 months of not being at your best. The last 2 weeks of treatment and the two weeks after are the hardest. You will need help, don't be to proud to ask. You will lose weight, don't be afraid to eat a few of your favorite items over then next week or two.

Cancer effects are both physical and mental. Watch out for bad thoughts that spiral out of control. Start to recognize when this starts to happen. Once you made your decision on treatment, follow there instructions and don't think about it. Make all decisions based on successful treatment not failure.

Your life has now changed. Start clearing your schedule for the next 4 months. Get as much done now as possible. I am thinking cars, house, garage, yard, work.......... These things may become very difficult to do. I had trouble taking out the garbage for 4 weeks.

HPV Status is a good thing to find out but it really does not matter. Treatment is the same. I am 6 years out and doing very well.

Good luck and post often. It helps.

so sorry you are here. I'm a caregiver and I have learned so much from some of the posts. People here know what they are talking about to make things go smoother....heed them! My husband is determined the rules do not apply to him and he has suffered way too much already. He has done 5.5 weeks of radiation with 10 more treatments left.

Thanks for the replies and encouragement. Meeting with the RO today for the first time (local), will pass on what I find out.

I would go to Moffitt if I could but the drive, I said is about 2 hours w/o traffic etc.. that would be "each way", 4 hours a day on I-75 would in itself be a dangerous activity.

George

George,

There is a Hope Lodge in Tampa run by the American Cancer Society, which stays are free! I stayed in NYC for 8 weeks, and it was the best! There might be other discounted housing available that I don’t know about, but I wouldn’t hesitate again to stay Hope Lodge.

I used to see Dr. Louis B. Harrison, Chairman at Moffitt of Head and Neck Cancer, Radiology, in NYC, who cured me after seven head and neck cancers!

Good luck

https://amp.cancer.org/treatment/su...hope-lodge/tampa/about-our-facility.html

Well,
I will be starting radiation next wednesday, 40 sessions. Still see the MO on monday and still not sure if the MO will want chemo,hope to learn more. The RO did get the pathology and I am HPV+, so there's that, and he said he doesn't anticipate a feeding tube and expects about a 30lb drop, I was about 285 end of last year, 255 now so I guess we'll see.

If you are going to need chemo, it won’t be as soon as the radiation starts. If you are getting the three big bags, it will be in weeks, 3, 5 and 7, likely. If you’re not getting a feeding tube, please make sure you hydrate. Dehydration can make you feel really awful.