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STAGE REVISION

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

I had my first post visit with my surgeon today and he kind of rocked my world. He met with the Tunor Board and the consus was to re stage my cancer. I was originally staged T2N2BM0 42A P16+ restaged T3N3M0 42B P16+.

His explanation was a combination of the sizes of the tumors and the aggressive spread. he described the cancer in my mouth as looking like an "oil slick" that he peeled off. The original stage was described to me as the best type of Stage 4 and now the new stage is "middle of the road" stage 4. He thinks the long term prognosis is still very good but is reluctant to put a percentage on it.

HAS ANY ONE HERE EVER HAD THIS EXPERIENCE, AND HOW WAS IT EXPLAINED TO YOU??

My surgeon discussed with the Oncologist the need or benefit of now radiating both sides of my neck as the mouth cancer came up to the Midline portion of my mouth. This combined with how aggressive the cancer was,I have made the decision to radiate both sides of my neck along with Chemo.

I am pretty wigged out with the Doc's hesitation to not place a number or percentage towards my reoccurance and or survival. He has never said he thinks the cancer will come back or that this will take me down in the future. I am not sure what to think.

BEST!!

Mike

Lena Rose
Posts: 73
Joined: Apr 2010

I wouldn't get too caught up in the numbers. The fact that you're HPV+ is significant for a better prognoses. Try to stay positive. My husband was also radiated on both sides of his neck along with chemo. Wishing you all the best as you start treatment.

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

Thanks for the positive thoughts. I need them now.

BEST

Mike

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mike,

Don't worry about the percentages!! Like it's been said here many times, those percentages are based on groups of people. You're an individual and based on what I know about you, you have a tremendous attitude and are a big time fighter. That along with you being younger and in good health and HPV+ all make your odds go up. No matter how good the doc is, they really don't know the percent. It's more of a SWAG (Scientific Wild A#@ Guess). To me the doc re-staging you shows that he's concerned and has a big interest in you, so that's a plus. Focus on the fight, not the numbers that you can't control!!

Of course having said that, I was all over all 3 of my docs with those questions. They didn't re-stage me, but when I went in for the rad neck dissection they were not expecting what they found - mets to 10 nodes on my right side and one on the left. When the ENT came out to tell my wife he was crying and this is the guy who does more of these surgeries than in anyone here in our town. He said my chances had gone from 85% to below 50%. Since that time I've kind of thrown the percentages out the window. I'm a numbers guy so I still like reading and researching all the information on it, but I don't ever think in those terms. I just know I'm gonna make it! Since the surgery and my last clear PET awhile back, he's re-evaluated and said 75% now. I love my ENT but in my opinion the percentages are just a guess.

It sounds like yours is more aggressive than you originally thought, but you just need to concentrate on kicking the shix out of this, because I'm gonna hold you to meeting me up at Clancy's as soon you are able!

Positive thoughts coming at ya Bro!

Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

Greg, my wife and Doc have pretty much said the same thing. It took me a few hours once I got home to re think things and I feel much better. You are correct, focus on what you have control over.

Yes, Clancy's is definitely still on.

Thanks Buddy!!

Mike

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

I feel that the above advice is good also....

As for the percentages, I really think that there are so many factors involved, general health going in, age, attitude, genetics, etc....everyone is different.

As for your comments on now the decision to radiate both sides along with chemo, well I was staged at III and that was the plan for me upfront and all along. So I would have thought that would have been in the works for your initial treatment plan.

My plan for Right Tonsil, and one lymph node STG III, SCC HPV+, was to remove the tonsils, nine weeks of chemo in three week cycles, followed with seven weeks of concurrent weekly chemo and 35 days of radiation (both sides of the throat).

Are they considering this a recurrance or an updated original diagnosis?

Again, try not to get wrapped up in percentages, staging, etc.... Stay positive and fight the fight with everything you can, staying on track to beat the disease.

Everyone is different, everyone reacts differently, and everyone heals differently....

Best and God Bless,
John

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

Not a reoccurrance, just a change from the original diagnosis. After sleeping on it, I am just taking it in stride. I feel good now and will will focus on myself and not numbers.

Thanks

Mike

fisrpotpe's picture
fisrpotpe
Posts: 1334
Joined: Aug 2010

Mike
Time to leave go of the percentages. There are only two percentages and they are alive and well you know what i am saying. We can not control what is going on with the cancer but we can get up everyday, give praise to another day of opprotunity, carry a positive attitude with us as we go out to make it a better day for all those around us, reach out to those who are less fortunate than we are(there are many more that have it worse than we do), and keep having fun. wonderful... is my only status, just diffenet degree's of wonderful.

Hang in there!

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Mike,
Like Lena Rose and Greg said, the HPV, if you've got it, is a good thing. Who'd of thunk?
Mark was in yesterday and I was into asking some HPV questions. The overall answer to the HPV questions is there are more questions than answers. But the thinking is that HPV has a high CURE rate. These cells seem to get trampled in treatment. There are thoughts that people who are HPV+ may not need the aggressive treatment of the traditional H&N cancers. And there may not be a need for chemo at all if it is found to be contained to the Head and Neck. But it difficult to do research on this because no one wants to take the chance and opt for anything less than "throw the book at it". So that is the good news about being HPV+.
Once they opened up Mark's neck they saw he had spread to his muscle, and I all his lymph nodes on that side were removed. Because of this his numbers went from 90-95% to 85-90%. Of course I still worry...but am grateful that we chose to cut out as much at first and do radiation AND chemo to clean everything up.
Do not get caught up in the numbers. You are a case unto yourself, and like others said, attitude and health prior to treatment are huge factors in success.
Take care,
Kim

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

You are so right. I took some time to really think about it and it really is about just me and how I heal / react.

I still need to learn how to look at things objectively. I am a very "black and white" person by nature, but there is nothing "black and white" about this. There are "shades of gray" and it's not about "round peg round hole". After my visit yesterday with my Surgeon, he is amazed at how quickly i bounced back from multiple surgeries. If I listened to all of the residents that told my wife and I how slow it would be to heal from the surgeries, I would have been a mess. I am always trying to raise the bar each day with healing and it is working. This should prove that numbers are just numbers.

I like the new photo, Mark looks so good, and more important you guys look like you are having a blast. Huge deal for both of you.

Mike

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Do NOT listen to the residents. They are still working from a text book and very little experience. The information we got from residents v. Mark's surgeon was vastly different.
Unless the medical professional is working directly with you throughout your case they are going to give you the general response to your questions.
Mark asked the nurse practitioner who works with his wonderful Radiologist, "will I get my saliva back"? She gave the text book answer, she did not know that Dr. Quon had made some changes to how/where Mark was being radiated, thus sparing his parotids even more.
My advice: direct your questions to the person treating you!!!!
Kim

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

You are 100% right. After sleeping on it and looking at it for what it is, the numbers really are insignificant.

BEST!!

Mike

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Looks like a good night's sleep got you back on track.
Take comfort from the fact that you're HPV-pos, but most of all, keep a positive attitude. I'm 100 percent convinced that it helped me through, and it's made a big difference in my life since then, too.
Best of luck.

--Jim in Delaware

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

Jim, the sleep helped allot, but keeping evrything in perspective and getting back on track with the positive attitude helped the most.

It's wierd, but once I got back on track mentally, It is now just a passive thought.

BEST!!

Mike

Douglas08
Posts: 18
Joined: Jul 2010

Hi Mike,
I agree with what others are saying especially about each person being different.

In my research I found the percentages for my husbands stage 4 hypopharangeal scc were not good. However I decided my husband would fall into the percentage of people in remision and cured no matter how small that percentage might be!

He's 6 mo out and no sign of disease. I continue to pray every single day.

God Bless and many prayers being sent you way.

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

Thanks for the advice. Between sleeping on it and comig here for some "real world" advice has me back on track.

All the best!!

Mike

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