Tongue cancer

Having tongue depends on location, size, metasis and what type of cancer and if HPV+.  My husband had SCC HPV+ base of tongue, 5.1 cm, left and right lymph nodes.  This type of cancer Dr said is curable, not treatable, curable.  I didn't believe him.

No surgery.  35 Radiation treatments and 3 weekly cisplatin treatments.  First scope showed no tumor.  Promising and we believe it is gone.  First PET in february 2018 to be sure.  He faired very well and is one happy guy.  But this is just one story.

I had SCC BOT Stage 3. No surgery. 35 rads and 3 big doses of chemo. 

No surgery, 35 radiation treatments and 3 chemotherapies of Cisplatin. Recent Pet scan was clear.

Kitkat.tulsa said:

Thank for your history.  Just

Thank for your history.  Just so new to this.  My husband has a tumor on his tongue that was biopsied as positive.  PET shows 2 infected lymph nodes.  They want to remove a half dollar size plus 1/4" of his tongue, then neck dissection and remove as many lymph nodes as possible.  Then chemo and rad.  A surgeopn who started Cancer Treatment Ctrs said he found 80% of the time the tongue cancer returns.  He said to do chemo to shrink the tumor then do surgery and radiation if needed.  Its just so opposite sides of the spectrum and makes us unsure which is right.  we are considering going to MD Anderson though

so they may be a good choice that's closer than MD Anderson if you are in Tulsa.

Induction chemotherapy (chemo before surgery or radiation) is a little bit controversial for head and neck cancer and there is a lot of disagreement among the medical community on whether it has a place in treating certain head and neck cancers.  One example where they do agree it could be used is when you don't know where your primary tumor is.  But that doesn't sound like the case here.  On the flip side, surgery followed by radiation/chemo is generally accepted as a high quality treatment plan.  There are always exceptions to every rule of course.

In my opinion, your first treatment plan seems more consistent with conventional first line, advance disease treatment looks like.  I would definitely get another opinion from a good center and have them explain how they came to their discision.  There are guidelines that are generally used (NCCN guidelines).

HPV status is very important as it can inform your team whether you can actually de-instensify your post surgical treatment.

As far as me, I was T1N2bM0 HPV+ base of tongue.  My primary was about 4mm at it's largest on the base of my tongue and it spread to 2 lymph nodes on the left side of my neck.  I had a neck dissection to remove about 6 total lymph nodes.  I then had robotic surgery to remove the primary from the base of my tongue.  Because I had no other risk factors I only required radiation post surgery and received a smaller dose than normal.

Agree with others...be comfortable with your plan.  Get as many opinions as you need.

Good luck.

Ditto on what soonermom wrote.  HPV cancer is now fairly well understood, and while MD Anderson/Slone/etc. are good research centers locally there are many fine treatment centers.  My team was thru plain old Kaiser-Perm HMO, but that translated into a chemo oncol who was a prof at Emory, and a Rad oncol who had just completed a fellowship in Head and Neck at MD Anderson.  We ended up 30 minutes drive time from our house, and my wife had our kids and her family for support.  Odds are good that you may need many days in the infusion lab getting hydration.  Things went very south for me for about 4 weeks, ER visits, days in emergency care, but it meant that the family went home to their own beds at night.  Things are good now, 1 year post, but it's nice being close to a very good and proven treatment option that we are familiar and comfortable with.

Hi Kitkat,

I had tongue cancer in 2000, and went through surgery first, and radiation second.  I've been through some other wars with the Beast since then, but I am surthriving.  You can check out my profile for more information about my journey.  

Kitkat.tulsa said:

Additional updates.

My husband did get the PET scan results and he has lymph nodes on the left and right side in addition to the tongue.  He also has two lymph nodes around the wind pipe and we met with a Pulmonologist and they compared the size to a CT scan he had in Jan 2017 and there was not much change.  it would be hard to do a biopsy sample due to the location.  The team decided that the best option was to do Chemo first.  If the nodes in the chest are positive they will shrink.  Our Onocologist friend in Chicago agreed and we also met with a MD Anderson Dr here in Tulsa who agreed with the treatment course and drugs being used.  They did say he should not wait till January since it appears hes probably a 4B stage.  He had his first Chemo treatment last Friday.  4.5 hours at the hospital and then infused at home for 4 days.  Our visit Thursday showed good blood work results other than his Kidney function.  But he is a Type 1 diabetic and his kidneys are at 50%.  He finished last weekends chemo Tuesday night and he started his weekly Chemo today which was an hour at the hospital.  He will have another hour next Friday and then every 21 days starts over again.

We did ask for his ENT to test the biopsy sample and found out he is HPV negative.  So we are going to Cancer Treatment Ctr in Tulsa.  If they suggest surgery we will do research.

Glad you have somewhat of a plan. Sorry to hear about the HPV- status. 

As for lymph nodes going down with chemo.... I'm HPV+ and we knew that going in after my tongue biopsy. My nodes didn't go down until 2 months after 7-weeks of treatment was over. They literally shrank back to normal within 3 days.

Is he doing Cisplatin chemo? I did and while it left my hearing alone, it attacked my kidneys. I was at 100% prior to treatment and function went down quite a bit. They had me coming in for IV fluids routinely and I had to drink 120ounces of water a day (minimum). Kidneys are almost back to 100% now. The chemo also attacked my legs and I began suffering from neuropathy. It got pretty bad until I was able to go to the gym and start working out regularly. Now I hardly notice it.

Just research all the side effects of neck dissection - not to keep you from doing it, but to be prepared to keep those side-effects as minimum as possible. I had none removed but still started to develop Lymphadema. Luckily I've been able to reverse the problem with excercise and massage/drainage.

Good luck! 

swopoe said:

Why do you say that? Sorry to

Why do you say that? Sorry to hear about the HPV- status? My husband was diagnosed with HPV- tongue cancer, stage 1, in 2015. It has been 2 years and he is NED and doing awesome. His docs said he came through treatment better than anyone could have hoped. And he worked through treatment too. So what is your deal?

I don't have a 'deal', so tone it down.

If you have a choice between HPV+ or HPV-, oncologists will tell you it's much better to be HPV+ as far as receptiveness to treatment goes. Survivability is higher with HPV+ and so is lower reoccurrence rates. It's just the reality - something this board is most often about.

That doesn't mean many people don't get through HPV- cancers of the H&N just fine. It just means if you have a choice, HPV+ is usually better. First thing my oncologist said, "just be thankful you are HPV+ or your treatment plan would require surgeries."