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pet results in....should I ask prognosis, staging scares me

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Hi all,

My husband and I actually felt relieved by the PET results as we were hoping there were no other lurking cancers than in his neck (that's enough already). Found out he has scc level 2 lymph node measuring 3.5 x 2.2. The report states that primary is probably same side tonsils as those are enlarged. Also stated no metastasis. So....we were feeling optimistic. Then silly me decides that now I have more info....I'll do more research. And I am not even sure how to interpret staging.....but seems any lymph node involvment is advanced (III or IV). And prognosis just scares the crap out of me. Anyone out there with similar diagnoses/areas of metastasis/primary site? We are at Dartmouth Hitchcock now and exploratory surgery with biopsis are planned the day before Thanksgiving. We are waiting to hear when our second opinion at Dana Farber is. Any words of wisdom or been there and it's okay would be so welcome....thanks you guys.

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

but your fear of the numbers is unfounded as almost everyone here is stage 3-4. Historically this cancer presents itself in the lymph glands, so by definition is staged
3-4. Head and neck cancer spread local regional is totally treatable. For comparison I was base of the tongue (BOT) with spread to the right side lymph nodes stage four and that is me in the picture 3 years later running a 5k. Any question you think you should ask, do so without hesitation. Prognosis is a basic question you should ask and your plan for a second opinion is prudent. You are doing everything right so take a moment to acknowledge this to yourself. Welcome to the board and the best to you and your spouse on your journey.

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Fear of the numbers is unfounded, I believe lymph involvement is quite common based on posts to this site

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

Fear of the numbers is unfounded, I believe lymph involvement is quite common based on posts to this site

Maxwell3946589
Posts: 3
Joined: Oct 2012

My husband also had BOT cancer with spread to the right lymph nodes. He did 8 rounds of chemo and 40 radiation treatments. Treatment ended in April. Cancer is back. Now needs surgery. Did the chemo and radiation work for you or did you have surgery?

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Vermontgirl,

waiting for the results of the PET scan was probably the hardest part of the journey for me. From what I've seen, people tend to do much better than the stats suggest. I wouldn't worry too much about the staging... I, II, III, IV are just big boxes we are thrown in, to do some accounting. As you'll find out on this forum, everyone is different and your doctors will tailor the appropriate treatment for your husband. It might be that his primary will remain unknown.. I know it sounds scary, but it is not necessarily bad news: for many people on csn the treatment has been successful even if the primary tumor has never been found. I'm sure you'll hear from some of them. By all means, do all the research you can, find doctors you trust, and then let them do their thing.

I've been diagnosed with SCC of the tongue early this year, right before turning 31, so I always feel especially close to the young people who post here. Apart from a few scratches I'm doing well now. I live in Boston. If you guys plan to come to the city for a second or even third opinion, I'll be happy to meet with you. A big hug.

Dre.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Everyone is right a lot of us here have or have a loved one with Stage III or IV cancer. Once it moves to the lymph nodes it automatically is stage III or IV. Most never get diagnosed until the node swells in their neck. There are so many hear who have beat the beast and so many courageous people to learn from. I know it is scary and I too did way more research than I wish I had before finding this site. I scared myself to death. People hear calmed my nerves and got me moving in the right direction.

Hard12Find
Posts: 209
Joined: Sep 2012

That should be a relief...sounds very treatable,.....Treatment is rough but you two will get through this fine. Don't stress too much on staging, now you know you can move forward.
Jim

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Hey VTGirl, I forgot to include the link to our SuperThread last time when I posted replies to you.

Anyways, if you click this link, it'll take you to our SuperThread which has tons of useful info...

About 2/3 down the thread, you'll see a few links on Staging...

But again, several here including myself were STGIIi Tonsils.

SuperThread"

Best,
John

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Thank you everyone. I think I just needed reassurance. I can't wait until I can be the one to offer support from experience at least as a witness/caregiver. Back to one day at a time and my mantra "I will be okay, he will be okay, we will get through this." I will look on the superthread for direction of what to ask, what to expect. Surgery 11/21 is next. It is very comforting to see so many survivors and the support/suggestions you all offer to each other. As I learn to navigate this board, I know I will get and then later offer the same comfort.

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

a whirlwind of activity...Just like most everybody on here, a swollen lymph gland was my first hint that something might be amiss...and it took from January till March for them to decide it wasn't a lurking infection and send me to an ENT. If the professionals say it is Stage II, then believe it...no sense "researching", since more than likely you'll find other stuff that doesn't pertain to your husband's case, but will scare you anyway :).

Just stay close to this forum, ask questions....you will get answers. Treatments for nearly all Head and Neck cancers no matter where they are, seem to be pretty uniform...radiation and chemo...the number of rads and the drugs for chemo don't vary much either. The folks here who have gone thru treatment have practical things to tell you about getting thru treatment....they are life savers, both emotionally and physically. I came here right after I was diagnosed and have been here every day since (I finished my last rad June 16th, and my last chemo August 28th)...Life has slowly been returning to my new normal...I'm back to work, and tho I'm tired, I'm doing most the things I used to do...just a little slower.

You've got Dartmouth and Dana Farber on your side, both great hospitals...things are going to be ok....

p

CivilMatt's picture
CivilMatt
Posts: 3092
Joined: May 2012

Hi Vermontgirl,

You ever been to Montpelier, just wondered?

If you read all about staging in the Superthread and understand it all, you are a genius. Matter-of-fact I thought size of lymph node had something to do with staging?

I did not concern myself with staging until I was post treatments. Most of the statistics and Google (Bing in my case) are too depressing and scary and I did not need that.

It sounds like you both are in good hands, the wheels are turning, the treatment plan is being developed and soon you will be on your way to ridding yourself of the intruder.

I had stage IVa, scc, bot, 1 lymph node (left neck 3.1cm), surgery, rads & chemo and I made it through, I feel pretty darn good and I am not the bravest person among my H&N warrior (friends).

Try to relax and take it as it comes, advice is plentiful here (and good).

Best,

Matt

Crazymom's picture
Crazymom
Posts: 318
Joined: Nov 2011

I was very similar....I had left lymph node and a swollen tonsil. They did exploratory surgery to get a biopsy of the tonsil and that proved that the left tonsil was the primary. I had 6 weeks of radiation and chemo. It has been 9 months and I have had two skans that are NED and am feeling good and working. It was hard to go through but I am doing well now. Ann

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Stage four base of tongue - two lymph nodes involved. NED declared later on. I, too, did research up front, and made myself scared and depressed looking at "the numbers".

SCREW THE STATS

luvofmylif
Posts: 344
Joined: Sep 2012

mY husband is also stage IV BOT cancer. I also have spent many sleepless nights because of what I read on the internet. I am gonna make that my mantra today " screw the stats"
Joan

patricke's picture
patricke
Posts: 489
Joined: Aug 2006

Hey Vermontgirl, I was diagnosed with stage IV BOT, with lymph nodes a part of the package, back in 2000. I asked about my prognosis right away, about 6 or 7 years later. I wasn't interested in he prognosis at the time of diagnosis, I just wanted to hit the ground running with treatment. I just wanted to do what needed to be done to get through the treatment process, and prognosis was, for me, not part of the equation, my plate was full. Happily, I'm way past treatment, and my life is full; so, been there, and it indeed is okay, just keep your eyes on the prize, as they say.

PATRICK

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I have some very simple thinking about statistics. When at a fork in the road, When at the point when treatment options must be decided, then statistics are valuable. If treatment A has a 80% success rate, and Treatment B has a 40%, the choice is simple. However, when the road is straight and narrow, when there is no choice, then statistics have little value. What matters if "success" is 80% or 40%. We still have to live our life day by day.

So I try to live health. Each day/week to eat a better balanced diet. More fruits and veggies; less processed carbohydrates. Try to communicate with my grown children. Try to make life easy on Arlene, my loving caregiver. I just try to focus on what is important.

I try to learn about treatment options. Knowledge that I can use to formulate questions for my healthcare professionals.

All this works well throughout most of most days. But at night when I try to settle down to sleep, anxiety does raise its head and bite me. That's life I guess.

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

Hi Vermontgirl,

Welcome to the bus no one wants to be on...

I have a loved one with Stage IV, BOT, 2 lymph nodes involved, HPV+16. We are near the end of treatment and it's been quite the "bus ride" (our famous words here on the forum). We have moved from seat to seat on this bus ride, but we have had great passengers and other great folks that got off the bus early that have helped us and keep helping us along the way. You will find these folks to be incredible advisers.

C~

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

familiar with a C Dr there, and that it's a first-class place for H&N. Sounds like you have great Drs lined-up.

Getting it started is, for many of us, the most mentally-tough time of it- dealing with unknowns and thinking worst-case possibles, rather than the actual doing something about the C that'll happen when tx starts. Does get mentally easier. That said- realize that he will survive this thing just fine, and the anxiety you feel, now, is unfounded. You do know an ordeal lies ahead, but that ordeal is all Positive- he is getting rid of the C, and he will.

I had two lymphs that grew quickly on the left side of my neck, noticed in 11/08, and tx started in 2/09- AND THIS IS 11/12! I did have two Biopsies, but my Drs chose to deal with my NPC with concurrent chemo and rads, returned to work in 5/09-AND THIS IS 11/12!

Do your best to keep it in the Positive, VTgirl. A killer showed up at your doorstep, but you got the means to disarm that killer and get rid of it. Sure, there's gonna be a bit of a struggle with it, but at the end of the day it'll all work-out just fine.

Believe

kcass

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

Stage IV, with mets to lymph nodes on both sides. This is doable. I'm 2 1/2 years out and doing fine. If you must search the internet, limit your reading to the research results of "Maura Gillison" with regard to Stage 3 and 4 tonsil cancers. It's very reassuring.

Deb

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

These posts are just what I needed today and ones that I will return to when I need a boost. I am an underdog....always the one that came from behind to win. I am ready to battle. I even bought a special canvas notebook and outfitted it with all kinds of organization stuff so that I can attack with preparation and determination. I chose red.....power. I do believe in positive thinking. Unless they can tell me what side of the fence my husband is on.....I don't want to know because I fully intend him to be on my side. If I let this cancer permeate my thoughts with worry too much of the time, then it has taken that part of my life already. I do worry, but force myself to limit it when possible. It has already brought our family closer and made everything that much more appreciated. Thank you for sharing your stories and encouragement. My head is up, my mind is clear, and I am ready to fight.

You are all amazing.

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

Is good, I'm pretty organized also...

One thing that I did was to keep all of my blood test records.

I have a complete history, most weekly for about 20+ blood tests, start to finish, and continued.

Before each chemo session (or at least with me), they'll run your blood lab work, mainly to make sure everything is OK, and to verify your counts are good to receive chemo.

Ask them for a hardcopy, I never had any problems getting them.

The same with all PET and CT reports...

At my facility, you can request a desk copy where they perform the scan.

Within 24 hours, they have the report and CD's...usually well before your follow-up with your MD.

Reading them first depends on how brave or anxious you are...

Best,
John

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