Dad has Tongue Cancer - Need to understand

Minny2004

Hi to all,

My dad was diagnosed in March with Stage 4b Tongue cancer. I don't know all of the numbers, but he had a 4.6cm x 2.7cm tumor in his tongue (OPSCC). He had the other lymph node involved on the other side. PET scan revealed something in the liver, which turned out to be the same cancer, albeit only about 2.3cm. He was tested for p16 and was positive.

He started treatment in April and received 18 weeks of extreme chemotherapy. He just finished. His last Cat Scan showed a 75% reduction in the total size of the tumor in the tongue (1.5cm x 1.1cm) and an 80% reduction in the liver (5mm). The other node on the other side is down to normal size. The doctor is pleased by the results and has discussed further options with us. He will receive weekly Erbitux (sp?) and then they can discuss radiation for the throat and some sort of cutting out of the cells in the Liver, if needed.

My question is, they will not use the word cure for him. I don't know if that makes him pallative, or if he is just something else. I want him to live as long as possible, but Google (which is not your friend) gives information that is hard to understand. Some studies show everyone with Recurrent/Metastatic dead in 2 years. American Cancer society says the 5 year survival rate for "distant" cancer of the tongue is 32%. Other sites state that p16/HPV cancer is easy to beat, but once you get into metastatis, I don't think that is the case. And even other sites say if it is Metastatic, but only to one location then it can be beat. I'm having a hard time understanding these stats and what this really looks like.

Any thoughts/understanding/experiences would be appreciated. Thank you and keep fighting the good fight!

 

 

johnsonbl

Yes, it's overwhelming for sure...

And I'm not going to pull any punches here...  It sounds like your dad's case is pretty bad.  Even being HPV+ (if you have to have this cancer it's certainly the kind of cancer to have) he has a lot of strikes against him.  The primary tumor size, the spread of the cancer to the opposite side of his body in that lymph node and the spread to the liver are all negatives.  Stage 4 for sure given the new staging system.

But....  The good news is that it sounds like his first round of treatment was VERY good and the tumors shrunk considerably.  Sounds like they will try and further shrink those tumors with Erbitux.  HPV+ disease responds extremely well to radiation and assuming they can get the tumors down in size enough the radiation and surgery will hopefully take care of the rest.

As far as statistics go, which I know you are looking for, those are hard to come by as the staging system is very new that differentiates between HPV+ and HPV- patients.  One retrospective study I found suggests that 5 year survival is around 20% for stage 4 HPV+ disease...but even that study only had something like 10 patients in the cohort because it's incredibly rare to have stage 4 HPV+ disease (according to the new classification system).

There are plenty of folks on this board that have had mets to other parts, primarly lung, and are seeing good response to new treatments.  I would focus less on stats and more on helping your dad through the different treatments that he's going to have.  While non-HPV related disease outlook is pretty grim normally I think HPV+ cases are becoming more "chronic" in that they can be fought for years and years with surgeries and treatments.  

I'll close with....I'm not a doctor...so I'm not an expert.  I've only lived it and learned along the way (I happen to work at an academic medical center and have experience as the administrator of a cancer clinic...so the lingo and resources are more familiar to me than most).

Stay positive!  Different people and their immune systems have different responses to these treatments...so a statistic that reads 20% survival means some didn't and some did, and then some...  Don't worry about the #'s.  He'll have a long road ahead of him and is likely going to need lots of help along the way.

Good luck and visit the board often, there is a wealth of knowledge here and people who are super willing to tell their story and experiences.

Best,

Brandon

Minny2004

I was wrong!

Brandon,

I was wrong! The tongue mass and enlarged lymph node was on the same side. The right side of the head. It doesn't change the fact that the cancer has spread/moved into the liver, but I think from a prognostic standpoint it can be helpful. My dad is otherwise healthy and has take this all in stride. If the Erbitux can shrink the tumor in the Liver further, they can do some sort of operation to cut out the cancer. Same for the Tongue in using Erbitux, Radiation or surgery.

I appreciate your kind words and I apologize for not having my information completely correct. I also founf out that the tumor in the neck was actually 3.8cm at largest, which technically makes it one less on the T scale. But, who knows if 0.2cm really makes a difference versus respnse to chemo, etc.

Thanks all who have read and posted. I will keep everyone posted on progress and please let me know your thoughts.

Thanks!

 

 

 

tommyodavey

Don't Google

Yes, we all advise to stay away from Google information.  The real truth is here on this forum.  Don't be surprised if they get all your Dad's cancer and he lives out his normal life.  Our stats are different from the Google myths.  All those seem to focus on is the negative.  We try to be positive but won't pull punches like was already stated.

Let them do all the treatments and try to stay positive.  He may just beat this straight out.