I am concerned that it is taking quite a bit of time to get a full diagnosis and worry about the time that it is taking to begin treatment.

I found a lump in my neck in mid August. I just thought it was an inflamed node and let it be for a week. After 7-10 days I went to see my GP and he got me in to an ENT 7 to 10 days later. The ENT biopsied the node then I'll fast forward to last Thursday when I was diagnosed with SCC, HPV+. This has taken 2 months - now I need a PET scan and then oncology hopefully this week. The cancer has been here since mid August! Is this normal? Am I concerned about nothing?

Thanks.

Ray

Since you did not go to the ENT first, it took several weeks before you saw the right professional. This is normal for just being diagnosed and you are now right on track. A PET is necessary to determine if cancer is anywhere else and how advanced it is.

Relax and soon the flurry of appointments settle down and you will have a treatment plan.

Wait sorry I disagree. You should have had your results two weeks post biopsy, at that point your dr. Should have made an appointment for a pet (right away) you should have had it by mid September, is is too long to wait if your not being seen by a ccc get to one speed is important when dealing with cancer. Also you will need to visit a dental concologist (for trays and removal of any teeth that might be an issue (if they are in the path of radiation) ) and a hearing test - all this will take time. The amount of time between dx and surgery for me was 6 weeks. Had radiation been needed instead of surgery (dependant on cancer type and location) it would have been maybe a week less as it was I had to wait to be scheduled for surgery. Dx'd dec 20 surgery feb 4. (this included christmas slow down) That's normal. 2 -3 months is not - and you haven't even gone for mask making etc.. Push - make noise. This is your health. Good luck - ps pet results are usually available withing 24 hrs max - do not wait a week for results. And try to get them to schedule the other things as well.

The best place to go for treatment is a NCI cancer center. Here is the link.

NCI Cancer Centers

I agree with Cheryl, but unfortunately your story is all too familiar. Kevin found the lump in April and was diagnosed in mid July! We started induction chemo on July 25th. By then it was stage IV.
Just had our 1 year PET though and he's clear so far!!
Hang in there, but you are thinking correctly in my opinion. You have to advocate for yourself and try to get things going.
Kathy

My first worry was a sore spot on my tongue - Feb of 2002 - firm diagnosis Feb 19, 2003, surgery April 2003. With My recurrance my first thought that it was back was in March of 2004, firm diagnosis Sept 24, 2004, surgery Oct 2004. Sometimes it is misdiagnosed and even when it is suspected, sometimes it can be difficult to diagnose.

It sounds to me like things are moving along at a very good pace for you. It is so hard to be patient. I remember wanting this cancer OUT - not NOW - but RIGHT NOW!!!

Keep us posted and good luck with everything.

Donna

Well it has been a while, but here is the update.

I went to Beth Israel to see Dr. Lou Harrison for a second opinion as well as the folks at MSK. Both concurred with my local RO opinion for a treatment plan. After some thought, we opted for local treatment. Harrison and my RO are close colleagues and Dr. Smiths care has been exemplary. Thanks to the folks here for the help getting this far.

I am finishing week 2 of treatment and my throat is starting to dry out a bit. Other than that - no complaints. I feel pretty fortunate so far.

Treatment plan is 35 IMRT treatments 5 times per week for 7 weeks, cisplatin once a week for 7 weeks.

The doc at MSK gave my wife and I a great deal of hope. He said that someone at my age and HPV+ with no tobacco use should be very very curable. Upwards of 95%. Granted, this is not 100%, but we like the odds.

Looks like a plan.

Wow. I guess I was lucky. I had a biopsy on a Monday, got my diagnosis a week later, and saw the ENT the next day. I had a PET scan during the same week, and surgery the following week. Saw my dentist prior to my treatments starting where I was fitted for fluoride trays. I also got a PEG and a port prior to starting my treatments. They really didn't mess around with me. Glad that you are now on track!

Awesome so glad you are getting through it.

Thanks for the update Ray. I was just thinking last night that you sort of went away.
Hope that beautiful baby is doing well and glad to hear you are on your way to your cure!!
Kathy

Dr. Harrison is my doctor and Beth Israel, and is the best around. I'm going to see him on Monday for a follow-up. Good luck with the rest of treatments.

AM glad you are finally in treatment. Your ENT should have gotten the biopsy report to you much more quickly--something went wrong there, suggests that he/she may not be someone you can rely on (but I do not have all the details I am sure). Fortunately it may well not have a negative impact on the ultimate outcome, as if your diagnosis is SCC BOT, HPV+, the prognosis is generally thought to be quite positive and the likelihood of there having been any further metastases during the delay is low compared to other cancers.

You are getting a fair amount of cisplatin, and it caries significant risks. You may be getting lower, weekly dosages instead of larger, less frequent doses. If you have not already discussed the risks of the various strategies for using cisplatin I would encourage you to bring this up to your oncologist very soon, as there is the potential for irreversible side effects such as numbness/tingling in extremities or high frequency hearing loss.

Good luck to you. Treatment is a bit*h and will likely beat you up, but we come back with time, and it sure beats cancer.