Diagnosis: Tx, N2c, M0 squamous cell carcinoma metastatic to cervical lymph nodes on both sides wit

Hi Michael.

The difference in the Dx between you and and I is that you have both sides of your neck involved. My Dx was Tx N2b MO Stage IV. Having the lymph nodes on both sides of your neck involved makes your Dx more serious.

From the time I was diagnosed on Nov. 30, 2012 to the time I had the the surgery on Feb 7th, the tumors had grown substantially (go look at the pictures I posted). You could barely see a lump on my neck when I tilted it on November and by February it looked like I had a case of the mumps! 

My Team suggested the same thing concering the primary site. They said my body probably eradicated it on it's own but not before it spread it's joy to my lymph nodes. 

Sometimes it seems that time moves very slowly from the time you're Dx's to the time you start treatment (3 months for me), but you need to act now! If there are cancerous lymph nodes and they're encapsulated then that bodes well for rads only. Don't let them break out and send cancer cells onto the lymph node highway. Mine were intertwined in the muscles, nerves and blood vessels in my neck and it was a delicate and complicated surgery to remove them. As I mentioned in my previous posts, I need chemo as well as rads to cover the bases because they had broken out of their capsules.

I had no symptoms other than a swollen gland but by the time we finally got to surgery, I was not feeling well. Fatigue was prevelent as well as a pressure and ache on the left side of my neck. 

So I emphatically say to you with all urgency... ACT NOW! I know the emotions you're feeling. Everyone here has felt them. I know the fear and anxiety this is causing you. I know becaue I just went through them. Now I'm in the fight and doing something about it. It's far better than letting this beast take me without a fight! The bottom line is this...

Do nothing and this beast will take you. Do something and you can Beat the Beast!

"T"

D Lewis said:

I second what 'T' said...

You have cancer cells roaming loose in your body. That is how they got to the lymph nodes.  It is only a matter of time before the cells take root elsewhere in your body, be it in additional lymph nodes or in your lungs.  Treat it now, for the best chance of a complete cure.  

Deb

Don't, and I do mean DON'T wait.  I was dx last March, SCC, BOT, left cervical lymph nodes, fortunately no mets, but stage IVa.  My docs did not pursue surgery to start, they wanted to do induction chemo, then a concurrent chemo/rads, and then after recovering, if there was any remnant disease, then surgery. 

Things followed their plans, though induction lasted only one of the three sessions, my kidneys didn't get along with the cisplatin, and in October I had a neck dissection that removed 4 nodes, pathology showing minor remnant active disease. 

Fast forward to early March, and the second follow up PET, surprise surprise, a hot spot is still in the neck. 

I considered doing nothing at that point and discussed it with my RO, who said "you can do that, but you risk it becoming metastatic and uncureable.  At this point, it is still cureable".

So, get the surgery done, get the treatments.  who needs to be looking at the inside of a casket sooner than we need to?

Michael

SCC does not go away by itself.  Your dx already involves tonsils, tongue and lymp nodes.

Throw everything you can at this thing and the sooner the better. Give yourself the best possible chance at survivorship.

If you do nothing, you will die.

I asked my DR the same thing and he said you may be dead in a year. My understanding is that SCC is a very fast growing cancer.  You want to act as soon as possible. In fact after my TORS surgery,  I was told that the best practice is to have radiaion within 6 weeks to maximize its effectiveness.  I had T1N1M0 tonsil cancer.  I had cancer on only 1 side and had radiation to one side only. I don't want to scare you but you need to act now if you want to treat.

My husband's primary was never found either. I don't think that really changed the course of treatment. He had 35 rads, 6 chemos and is NED at 9 months out. He did not have surgery.

I remember those early days after he was diagnosed and questioning everything. What if it's all a mistake? It wasn't a mistake, he did have cancer, and it wasn't going to go away on its own. You need treatment if you want to live.

Laralyn said:

Don't feel badly for asking

We have all wondered (or hoped) similar things.

Look at it this way: surgery and radiation are very, very unlikely to kill you. Yes, the treatment SUCKS but even if you also had chemo in the mix, you're looking at 6 months of crapiness and some lingering side effects for the rest of your life... compared to potentially not having a "rest of your life." 

I won't trivialize how much the treatments suck when you're going through them, or what it's like dealing with the side effects (which range from irritations for some of us to life changers for others). But when you look at the numbers and you weigh it objectively compared to survival odds without treatment and the increasingly invasive techniques it takes to effect a cure if the disease progresses, IMO it makes sense to get treatment now. 

I'll say it again for emphasis: the treaments are very, very unlikely to kill you (probably below 5% odds). The odds of untreated metastatic cancer killing you are unfortunately very high.

If you still have doubts, get a second opinion. If two doctors recommend surgery and radiation over "wait and see," then please listen!

I asked the same questions and my doctor replied "you can sit around and wait to go to hospice". I thought that was a bit strong at the time but it made an impression.

that you've reviewed the possible short and long term effects of surgery and radiation.....and actually have left "doing nothing" in the hopper as a choice.  Surgery = some short term pain.  Radiation = some short term pain, and some longer term PITA's, but nothing we can't live with....lack of taste, lack of saliva....doing nothing = pushing up daisies.  This doesn't even compute to me.

I'm willing to wager that by the time you are 3 months out of treatment, you'll be walking, talking, eating....and very possibly spitting....and this will all be in your rearview mirror. 

Oh....and to your question does mestastic cancer always or USUALLY get worse and spread?  Yours has already spread...get thee in to treatment before it's too late to do anything!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

p