My name is Michael.

My partner Seth & I were living out our life long dream of owning a lodge and resort along the coast in Northern California.

We had just aquired it 6 months ago. Our new lives were perfect...

Then; On June 8th, 05 I got the call.

The FNA was positive for Squamous Cell Carcinoma. I had a large swollen node in my neck which was troubling more and more everyday over the 6 weeks that I had noticed it.

Now I've spent the last 13 days visiting 18 Dr's.

I had a CT/PET fusion done immediately.

That found 2 lymphs nodes about 3 x 2.8 cm and 1.5 x 2.35 cm (both right side) and the Right Tonsillar Pillar as the most likely primary. No other "hot spots" (thank God!).

I got a PCR ran on the cell block from the FNA. It came back positive for P53 gene defect. I am waiting on the HPV test on the FNA cell block.

I had surgery scheduled for tomorrow morning. A radical neck dissection (right side) and a radical tonsillectomy.

I just cancelled it.

I have been getting so much conflicting information.

Been to John Wayne Cancer Institute, Stanford, UCSF, UCLA, City of Hope and several others.

Almost without exception, every ENT/Surgeon recommended surgery as the 1st line of tx.

Two oncologists have stated that surgery should be a 2nd line, only if chemo/radiation fails.

One of them, from a CCC, states that he is getting excellent results with Erbitux and that I should hold off on any surgery until necessary.

He stated that once I have the MRND that the blood supply is comprimised and scarring inhibits medicine options.

I asked the surgeon about this, and he stated that since I am under 40 and have "..no risk factors.." then in his experience it must be "..a very agressive neoplasm which requires agressive treatment..." He further stated that post chemoradiotherapy sugery is much worse and has greater complications, blood loss, and it's more difficult to determine good tissue from bad.

I am hoping that the HPV comes back positive on the PCR so that will mean I "am" in a risk group even though I have never smoked or drink.

Now I'm second guessing my second guessing.

Today, I am getting a sore throat (slight) and my right ear has slight pain. Plus a little headache. And a slight pain when I yawn back where my right tonsill is. :-( So I am afraid I made the wrong decision to explore other options and lost valuable time.

Our business demands literally 24/7 attention and has already suffered irreparable harm from the few days I have spent "Dr shopping".

We are 3 or 4 hours from the nearest major city.

I don't know what to do!!


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.