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#45502 06-21-2005 06:03 PM
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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.
#45503 06-21-2005 06:24 PM
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First off what's the staging? This is a relatively important piece of data. Secondly you muat have seen the NCCN Oncology Practice Guidelines that may be of help in the decision also. What surprises me is that it is usually a consensus opinion from a tumor board when one goes to a CCC, and yes, surgeons like to cut and oncologists like to poison and RO's like to burn. So you need to decide what tools in the arsenal you are going to use.

I'm guessing that you are maybe stage III, based on 2 lymph nodes involved and a tonsil primary. Many would advise you to hit it hard with everything they've got.

Your sore throat could be post nasal drip from allergies - it is that time of year.

Good for you to be your own advocate and explore your options - but once you select a treatment protocol - stick with it. Personally, I would be a little nervous with a chemo only (single treatment modality) for what you are describing - but I am not a doctor, only a patient (former that is) like you.

Plan on getting some help to run the lodge. I had radiation and chemo only and it was 1 1/2 years until I could function well again although others here have faired better.

I was Dx'd in November and Tx didn't start until January so don't panic about the time.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#45504 06-21-2005 06:53 PM
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Welcome Michael, Sorry that this "thing" is in your life right now. You have a tough decision ahead and I want to be very cautious about my input as I am not a medical professional. If you can avoid surgery that would be a good thing. Even if you had surgery you would certainly be advised to have radiation and probably chemo anyway. If it were me I would have a long heart to heart talk with the Doc that suggests holding off on surgery. Find out what statistics he/she is relying on. You would be well advised to treat this with everything in the book if that offers the best statistical odds.

You do not want this thing to come back.

As Gary said you need to ask for and find help for your work. The surgery won't be so bad but radiation will make work a bear. Besides stress is contrary to healing and you need to off-load stress.

The question of stage probably can't be completely assessed yet. Node involvement plays an important role in staging and without a radical neck dissection they won't know how many nodes are truly involved. PET scans aren't accurate down to microscopic levels. Stage is important to you only to decide on treatment options. After that you get survivorship and the opposite. There is no such thing as 60% survival when it is the individual.

I recommend survivorship!

Take care.


Mark, 20 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#45505 06-22-2005 12:44 AM
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my thoughts and prayers are with u at this stressful time please remain positive it is most importantat this stageand dont worry to much remember HEALTH BEFORE WEALTH.hugs your way take care best regards and prayers sent ur way
maz

#45506 06-22-2005 04:32 AM
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Thanks all for your comments.

- I was told by several Dr's that I am Stage IV.

Since there are 2 nodes involved and they are large.

- Last night I had a total meltdown.

I was having nightmares about racing onto a freeway going the wrong direction.

I feel like that's what my life is now, just a matter of time before I have a head on collision.

It is truly inspiring to read sincere notes from so many wonderful people.

Basically, I have to decide which course to take.

Since I am Stage IV already, I am not sure that taking no course would be worse than the treatments the Drs are suggesting.

I present to the tumor board on Thursday at Stanford.

As far as getting help with the resort, we were just getting things off the ground and it doesn't justify the added personnel, not to mention my medical costs, support and care.

I'm afraid we maybe should sell, but that is like pulling the rug out from under our dreams, plus it leaves my partner in a horrible position, even if I pull out of this...

That's the thing. I get the feeling you are never "over this". From all I read it seems like once I have been diagnosed, I am just a ticking time bomb. Even IF we get it all using these centuries old technologies of barbaric surgery, lethal doses of poison, and cancer causing radiation...The odds of it returning are so high, it doesn't seem worth the fight.

What I read is that 60, 70 or 80% of us get it again. It's like waiting for the other shoe to drop.

On one hand, I think why put my partner, our business, and our families through this rollercoaster.

When I was first Dx'd I thought, "OK, whatever it takes I'm going to get through this..." But, that's just it, you never get "through this" do you?

I don't mean any disrespect to any of you here on the board. I respect the battles you've won and am not trying to diminish the importance of your strength.

It's just a realization for me, and I'm not sure if I want to take that journey.

Our resort was such a fantasy come true for both of us. We were only able to enjoy it 6 months. Just long enough to remodel and start to see the joys of owning it.

If we loose it, then we loose everything! Not only that, my parents would loose their home that we've had together with them for 10 years.

I know it seems petty to be worried about financial considerations, but frankly, it is reality.

Why should I wreak my partner's future (he's only 33) and my family's home and retirement future..?

What's the "best possible outcome"..? Surgery that removes every microscopic cancer cell. Come on...that'll never happen. Then what radiation? Then what, "I'm cancer free" if all goes perfectly perfect...then, for how long? At what cost? (not only financially, but costs in other ways too)

Mutilation? Dealing with the public while they're on vacation. They don't want to see a cancer patient serving them breakfast.

I'll never really be "cancer free" even if all goes well, right?

I mean, we aren't treating the deficiency that caused the cancer in the first place, just using old, barbaric treatments with the slim hope that it will keep me alive a short period longer.

Please give me any thoughts!

I


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.
#45507 06-22-2005 04:41 AM
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I'm sorry. I re-read my post and realize it is like poisoning this board.

Everyone here has hope and strong positive feelings.

I have really tried. I guess what was keeping me going was the "plan" of surgery first, then 2 months of chemo/radiation back home in SoCal, then a few months recouperating back at the resort so Seth could get back in thr grove after we stayed in SoCal with my family at our 2nd home while I was having the chemo/radiation (&/or Erbitux), etc. for those 2 months.

When that feel apart yesterday when I decided to postponne surgery, I guess reality has started to set in more.

It's not going to be "over" in 2 months..Who was I kidding ? (myself). It won't even be "over" in 6 months, or ever. Until it consumes me.

I am normally an upbeat, positive person. My first partner died of AIDS about 15 years ago. We were together over 5 years and I stayed by his side through it all. It was rough. The last 6 months were in the hospital. I was there every night, and drove 2 hours each way to work.

We fought hard. He eventually had no fight left in him.

I don't wish that experience on anyone, especially Seth, the one I care about more than anyone on earth.

Throughout it all I stayed positive and tried every imaginable treatment. We traveled to SF, LA and NY seeking treatments for his infections and diseases. I spoke to institutes in France, faxed reports to specialists all over the world. Tried experimental treatments (even some early gene therapy experiments), but in the end, none of it mattered.

This just seems so cruel. Forgive my rantings please. I am so desparate for some guidance.


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.
#45508 06-22-2005 05:03 AM
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Michael, Take a deep breath....We all have been exactly where you are now. I know it isn't easy in fact the worst time is where you are right now. I had the same nightmares same griping fears same oh-shit. Forget what you read. Those numbers are not for you. Many do survive and carry on a new and better life. Yes the "old life is gone. As for how you'll look if you go through treatments, click my user name and you'll see a picture of me after my surgery and radiation. While I am stuck with the looks I was born with, I don't think the treatments changed things too much.

Remaining positive is your biggest challenge. Your Doctors will take care of you. Choose a treatment, choose a doctor you like and don't look back.


Mark, 20 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#45509 06-22-2005 05:03 AM
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Welcome Michael! Sorry you need to be here. I am self employed also & literally put my business in standby mode for 6 to 8 months. Keep level headed & try not to freak out! I know first hand about freaking out about the business impact. Let me emphasize, get your business affairs in order, get some help with the biz & focus on treatment & recovery & get this thing beat so you can get on with your life. The treatment will kick your ass & thats normal. I'm not trying to scare you, just realistic. Stay calm & focus on treatment & recovery. Let Seth help you. A comprehensive cancer center is definately your best bet. It sounds like you're doing your homework. As others have said, hit it hard & all at once. You do not want it to come back. I opted for all the treatments available & have no regrets. It sounds like you already know how to embrace life & go for it, just carry it on through this time. Keep yer chin up! Erik


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
#45510 06-22-2005 05:17 AM
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A neck dissection isn't that noticeable, especially if they only take the node chains and no muscle is involved in the surgery. So do not be thinking using the term mutilation. Will you look different


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#45511 06-22-2005 07:20 AM
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Michael, get it together and get treatment. This is a fight you can win. Don't overthink it, just get treatment.

I had stage IV with node involvement, had the surgery and the day after I got home was out pulling up ivy, a hard job that I was completely up to. When I finished rad and chemo, I went fishing. Yes, I was burned and bald, but the energy came back, the burns healed, and the hair grew. That was all three years ago and I am going full speed ahead, and you can too. I don't work, but all through treatment I did housekeeping and laundry and cooking. It took me a little longer, but I could do it. Do not think you will necessarily be laid so low you will be unable to function.

This is just an unfortunate bump in your road and to see it as going over a cliff is not being logical. Many, many people beat this awful disease, and it only takes a few months to do it. Not a bad tradeoff for many more years.

I am of the "throw everything at it the first time" school of thought, because that ups the chances it will not return. Your 60%, 70% and 80% recurrence numbers are all wrong. Even the generally accepted 50% five year survival is not good without the explanation that the numbers include people who refuse treatment, refuse to complete treatment, have other serious disease such as heart and liver, and those who continue to drink and smoke during and after treatment. Take those folks out, and the survival percentage goes way, way up. Given your young age and expected lifespan, you have everything to gain.

I know exactly how scary it is at the beginning, but once you begin treatment, things will improve mentally because you will know you are fighting, not just sitting back and wishing things were different. The only way things will improve is if you get on board a treatment plan.

And listen to Brian. There is no multilation involved. I wear my hair up so my neck is totaly exposed and not one person has ever noticed anything strange, not even children who say what they think.

Bottom line, you can do this and we will help.

Joanna, tough as nails, but means well

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