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Squamous cell cancer of the tongue and lymph nodes.

kang
Posts: 1
Joined: May 2012

I was diagnosed today with stage 2 squamous cell cancer of the tongue and it involves lymph nodes. I am 50 years of age and Doctor suggest radiation 5 days a week for minumum of 7 weeks and chemo as well. I am not sure either to do the radiation/chemo or surgery. I just want this out of me. And of course not to return. Any views on either?

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

Welcome.....scary isn't it.

We all have been where you are..actually you are in a little better place than some starting out (believe it or not), since you found this forum.

Like Splinter mentioned, having a primary and secondary location usually warrants STGIII or STGIV. In my instance as it was on the same side, and of a size that was determined to be STGIII. If it would have been a tumor on the opposite side (or other factors), it would have been STGIV.

Myself, I was diagnosed STGIII SCC Tonsil Cancer HPV+ and yep, a lymphnode also.

I was prescribed nine weeks of chemo in three weeks cycles (Cisplatin, Taxotere and 5FU). Then like mentioned to you, seven weeks of concurrent (weekly chemo and 35 daily radiation sessions).

That chemo was every Monday for seven weeks and was Carboplatin.

Myself, not that I had a choice (well I could have said NO I guess), I also wanted it out, but I also wanted as did my MD's to hit it hard.

Hit it with as much as needed and I could handle and be done with it, hopefully forever.

So I always advocate hitting it hard over taking a lesser route.

But those are choices with possible consequences for some long term side effects. One of those that I consider long term, is still being alive..Oh, my diagnosis and treatment was early 2009.

Anyways, all choices that you have to make and live with.

But survival is very doable these days, as is treatment and successes from it.

BTW, here is a link to the SuperThread... a compilation of tons of useful info for newbies such as yourself;

SUPERTHREAD

While I'm at it...the tonsils came out first, the tumor remained pending response from treatment. In my case, the tumor completely dissolved between the nine weeks of chemo, and starting the seven weeks of concurrent chemo/rads.

Best,
John

ratface's picture
ratface
Posts: 1239
Joined: Aug 2009

Hi kang and welcome to our clubhouse. I'm sorry for your diagnosis and journey to the clubhouse. I'm guessing your diagnosis and age were very similar to mine and I'm still here 3 years later, so lets slow down a bit. I was base of the tongue with right side lymph node involvement. Your description of, "It involves my lymph nodes" puts you in the Stage IV range. Multiple nodes is an automatic graduation into this stage. Don't get to alarmed as just about everyone here is in this range. What is important is that the standard treatment for this type of cancer is exactly as you describe, 7 weeks of radiation with chemo. A neck dissection may or may not be in your future and is this the surgery you speak of. Ideally you want a team consisting of an ENT, a radiation oncologist, and a chemo oncologist directing your treatment plan. Typically each case is evaluated by a tumor board and a treatment plan is formulated. If this is your current situation then you are in good hands and should begin considering their advised plan. If not,let us know and we can point you in the right direction.

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

....especially right in the beginning of your diagnosis. There is SO much knowledge, practical and medical here....you will find yourself coming here everyday for an answer to the questions that creep into your mind, and you will get those answers....You also will get more emotional support than you'd ever thought possible.

I have NPC, Stage III, with two lymph nodes involved. My treatment is the same as what has been prescribed for you........no surgery, 35 radiation treatments with concurrent chemo (Cisplatin)...and then for me, another 3 chemo treatments after the rads are over of Cisplatin and something else (heretofore, still a mystery, tho I have a feeling it will be the 5FU)...

I started my third week of treatment today, and feel comfortable that I'm kicking some cancer butt. My BIG node has already all be disappeared....so far the only side effect are some minor mouth sores....I'm still eating regular food.

Did they say anything to you about getting a feeding tube installed? I had one put in before I even started treatment...since I really didn't look forward to getting one after I was already feeling like crap. I'm glad I did.

The biggest piece of advice I can give you is to keep coming back here...the support you will receive cannot be measured.

p

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Sorry you have to be part of our club ....but the folks on here are GREAT and can give you lots of good info (though experienced I never nor would I imagine those on this board ever hold their suggestions or advice above certified doctors).

I think the SUPERTHREAD that John puts on is GREAT.

I'm going to echo ratface and I too have a question.

If you have multiple lymph nodes involved...you should be stage IV automatically?? I had base of tongue cancer with 1 lymph node involved and was stage III.

My question to you is also this: Is the cancer HPV positive (this is a virus) or is yours smoking / drinking related or some other? That's important to know.

If you are stage IV irregardless if it is HPV or not, I would certainly go the route the doctors advised (radiation and chemo) as well as surgery later if needed.

You did not say where on the tongue the cancer was located.

A great website is the Oral Cancer Foundation ...certainly go there and poke around.

Best to you Kang ....I said a prayer (if alright with you) as I finished typing this reply .....hang in there....this is beatable!

Tim / Idaho
Stage III base of tongue cancer with 1 lymph node same side of neck / HPV positive. Radiation and Erbitux treatment only (no chemo - no surgery) Finished my last treatment January 20th (followed by 3 months of total HECK in mucous and pain) but just today I got the All Clear on my follow up full Body Pet Scan and CT / Neck & Head scan. Some heat on my vocal cords .....now I need to get the years behind me as long as I can.

Laralyn's picture
Laralyn
Posts: 441
Joined: Apr 2012

It's an awkward place to welcome anyone to, but I'm glad you posted!

There are several of us going through treatment right now for something similar. Mine's in the tonsil--SCC, HPV positive. It was also in one lymph node and a couple on the other side were "suspicious" which put me at Stage IVa.

I'm on what sounds like a slightly different treatment than a few folks here, probably because my biopsy was so strongly HPV positive (virtually every cell tested showed HPV-16). I'm doing 33 radiation sessions (70 grey, I think) and I have Cisplatin chemo every week at a lower dose. I didn't have any starter or finishing chemo, and I didn't have surgery, either. The radiation oncologist thinks the radiation + chemo will get all of the cancer and he said the outcomes with this type of cancer are the same with and without surgery.

I think chemo + radiation may be the harder road than surgery, but I had no hesitation. I want this thing dead, dead, dead, no matter where it lingers in my body. If I need surgery afterward, go for it. Get it out!

The best advice I can give you is to educate yourself, or ask a doctor or friend to help research. You can find good stats out there and studies that are specific about the statistical differences between different approaches. That can help you weigh your choices. If your doctor won't answer your questions and give you stats (or, even worse, doesn't know them), then switch doctors! And don't hesitate to get a second or a third opinion. Your first treatment sometimes limits second treatment options, so make this shot count.

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

STGIII Tonsils and one lymnode on the same side...HPV+.

Nine weeks of chemo (Cisplatin, Taxotere and 5FU), in three week cycles. The concurrent weekly chemo (Carboplatin) and 35 daily rads.

The tonsils were removed up front, but the tumor stayed seeing what effectsa the treatment would have since it was close to the carotoid.

After the nine weeks of chemo, the tumor was completely gone, verified by CT.

JG

tommyodavey's picture
tommyodavey
Posts: 355
Joined: Nov 2011

Hi Kang,

I guess you were seeking information about SCC and found the link here. That's how I got here and I'm very glad I did. This is a great forum for support and information.

Can't give you any advice on your treatment as mine was a different breed. In fact my Dr. said it was so rare that there wasn't enough studies to know the best treatment. He offered surgery and chemo/radiation or just the chemicals and no surgery. What I did was ask him what he'd do if this cancer was on his tongue and that's how I got my answer.

What does your Dr. recommend? SCC affects people differently, so it's hard to get a perfect answer. I stick with the rest here agreeing that more is better. Hit it with all there is so there is very little or no chance of it coming back.

Good luck on whatever decision you come to.

Tom

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