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Squamous Cell throat and oral carcinoma

danman
Posts: 1
Joined: May 2012

I was recently diagnosed with Squamous Cell carcinoma of the throat and mouth. It began by me noticing a lump on the left underside of my neck on April 25. It is growing rapidly. A CT Scan and later 4 “conscious” biopsies of the tumor provided the diagnosis. The surgeon is doing a biopsy in the operating room this Thursday (May 31) to identify where it is emanating from. He suspects the bottom of my tongue and says there is a minimal chance he may decide to remove my tonsils if they look suspect.An MRI showed that some already leaked out.

Any insight will be highly appreciated. I feel radiation or chemo should have already begun as over a month has passed, but the doctor wants to identify the "mother" first.

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

You are in the "holy crap" part of things right now. It isnt unusual for a month or two to go by before treartment starts. One person on this board actually went four months. I had base of tongue cancer in 1998. It couldnt be operated, so I ended up getting a radical neck disection and radiation. Treatment started 2 months after my biopsies. i survived the experience. You will too. It sounds like you have a reasonable plan, so try to contain the anxiety that always comes with the diagnosis. Welcome to the board.

Pat

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Like Pat said, it's a process, yours has started.. It took probably nearly a month and a half or more before my treatment started.

Even at this point, more than likely it'll be a few weeks for you.

Some of the things probably on your schedule you aren't aware of yet will be a power port inserted if they plan on the heavier doses of chemo. Then also the possibility of a PEG (feeding tune), if you are to have radiation and your weight is on the low side, or other factors that could warrant that.

At the risk of being reduntant, as many have heard my story before....

I was Dx with STGIII SCC HPV+ Tonsil Cancer with a lymphnode as a secondary site. Tonsils came out first, confirmed the STGIII SCC at that time, HPV+ later.

Then the port, I didn't have the PEG...eventually moving on to nine weeks of chemo in three week cycles. Then finishing up with an additional seven weeks of concurrent weekly chemo and 35 daily rads.

Most treatment is one of three and more than likely a combination of the three..surgery, chemo and or radiation.

Again, as Pat mentioned, you are just in that initial waiting game as the best plan for you is being considered.

Best,
John

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

The waiting period between dx and treatment just about drove me up the wall. The lump on my neck was growing right before my eyes, and I was in an URGENT mood. From the time I first noticed the lump, to the time it was diagnosed was 2 months....and treatment didn't start for another 6 weeks...I was fit to be tied. But....as everyone on here told me...it was going to be alright....and it is.

Once you get this "slow" part over, you find yourself in a whirlwind of treatment, and the waiting part will be just a long ago dream. The waiting, however, is just about the most difficult part of getting thru this.

p

CivilMatt's picture
CivilMatt
Posts: 2807
Joined: May 2012

Hi danman,

It may seem slow, but it is not. You want the best plan available to you. I started out with noticing a lump (11-11-2011) on the left side of my neck while shaving. Luckily, my doctors did not mess around and passed me along to the experts quickly. Now, post 35 radiations and 8 chemotherapy treatments later it all seems like a blur.

Prepare for information overload and identify people you trust to help be your eyes and ears for you. Ask plenty of questions (here) and you’ll get a ton of good information.

I think most of us had biopsies, surgeries, PICC line, Port line, PEG tube, CT scans, PET scans, blood tests, etc. before radiation and chemotherapy began. Things will move so fast your head will spin.

Hang on, be tough and keep the faith,

Matt

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

Don't be shocked if the docs aren't able to identify the primary site of the cancer. My husband's primary was suspected to be base of tongue or tonsils, but several biopsies of those areas came up negative for cancer. The ENT told me they may never know where it started.

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