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

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Thanks, everyone for being so helpful in response to my previous posts.  

I got my official diagnosis today: 

Tx, N2c, M0 squamous cell carcinoma metastatic to cervical lymph nodes on both sides, with unknown primary

 

 

As I have posted before, the Mayo Clinic surgeon is recommending robotic surgery to remove the cancerous lymph nodes on both sides and sequentially removing parts of the tongue, tonsils, etc. looking for the primary site and removing the tissue if it is found.  They may end up removing all the potential sites without finding the primary.  He is recommending following the surgery with radiation only, with the type of radiation depending on whether the primary site is found.

Now that I have reviewed losts of posts on the potential short-term and long-term consequences of the surgery and the follow up radiation, I have to ask the question:  "What if I did nothing?"  What if I waited and had a follow up PET scan periodically to see if the primary ever shows up or if the lymph nodes grow larger?"  If nothing shows up later and my lymph nodes remain unchanged, I could keep living my life without treatment unless and until........

I have no symptoms.  They found swollen glands by accident leading to the biopsy and discovery of SCC.  The PET and ENT exams found no evidence of a primary site. 

Does anyone know....does metastatic SCC cancer always or mostly get worse and spread?  What % of the time does it not progress?  Does it ever go away over time?  One doctor told me that there may not be a primary site anymore because my immune system may have eliminated it, but the cancer cells remain in my lymph nodes.

This may be a silly newbie question, but I had to ask.

Michael

 

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

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's picture
D Lewis
Posts: 1521
Joined: Jan 2010

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

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Treatment for H&N cancer has come so far and is so successful today. If you do nothing you risk (a big risk)having those nodes decide to share their goods with the rest of your body and then at that point treatment will not only be more difficult but maybe not even successful at all.
I highly recommend you NOT waiting it out. They may not find a primary but treatment would be the same either way. Please do yourself this favor and put on those fighting muscles and do this thing!
Billie

MarineE5
Posts: 745
Joined: Dec 2005

Michael,

I can only echo the words typed above, try not to hesitate too long on moving forward. Give yourself time to think and make a decision on what road you want to take. For me, it was simple, I wanted the cancer out of my body, period.

As the others stated, the longer you wait, the more of a chance you have of the cancer cells leaving the nodes already involved.

This turns our lives upside down in more ways then one, but we have to face it head on.

My Best to You and Everyone Here

yensid683
Posts: 224
Joined: Apr 2012

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?

corleone's picture
corleone
Posts: 145
Joined: Jul 2012

While there is anecdotal evidence of spontaneous remission of cancer, I wouldn’t go that way. The natural course of cancer is very nasty, and if you wait now, it will be way too late to act later, when you realize that it progresses. Because it will get worse. You also have to realize that the rate of mutations in the cancer cells increases as time goes by, in other words, it gets more “malignant” and difficult to control, it’s not only the “size” that matters. The crucial thing is that you want the cancer cells to be more sensitive to chemo and radiation, and this happens in earlier stages.
My advice is to act now. Try not to be fooled by false claims of Cancer cure, Internet is full of this s##. Unfortunately the treatment is tough, it causes much more harm than Cancer itself at this stage, but so far it’s the only way to increase your chances of getting (even) cured.

Ingrid K's picture
Ingrid K
Posts: 810
Joined: Mar 2011

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.

 

 

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

Get treatment or get your affairs in order.  It's really that simple.

 

If you decide to get treatment, as I said in a previous post, I strongly recommend that you get a opinion that comes from a team decision on how to treat your disease.  From your posts, it sounds like all of your treatment suggestions is coming from one Doc, a surgeon.  It might prove to be what a tumor board would recommend but right now you don't know.  

 

I wish you the best whatever you choose.

 

Joe

lorig01
Posts: 66
Joined: Jul 2012

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.

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

You really only have two choices; treat and live, or not treat and die.  The odds of your just spontaneously healing this are zero.  There are no silly questions, I suppose, but this comes closeSmile  Don't waste one more second speculating on what has happened to the primary, this isn't your body just telling you to not treat and it will be ok.  The small or undiscoverable primary is a VERY COMMON FINDING nowadays for these cancers, and is typical of the type of throat cancer that is caused by HPV16.  Just dive in and take the cure.  Your doctors know what they are doing--- they've treated many like you before.   You have a very favorable prognosis with standard treatments, which is what have been recommended.   Just do it.

 

best to you.

 

Pat

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

We have a winner....

Along with the many others that have basiclly said the same thng....

Like Joe said....

Get treatment or get your affairs in order...(umm quickly on whichever route you decide)...

JG

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

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's picture
Laralyn
Posts: 433
Joined: Apr 2012

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!

hwt's picture
hwt
Posts: 1832
Joined: Jun 2012

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.

phrannie51's picture
phrannie51
Posts: 3619
Joined: Mar 2012

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

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