I am posting this here, in the hopes of any encouragement. I am just trying not to break down and be strong for everyone right now. We are in INdia, FYI, but we live in Michigan.

My father in law (Papa) has squamous cell cancer carcinoma of the oral tongue, stage 2. The clinical stage is presently somewhere around T2N1, but that will not be final until we receive back PET and MRI scan reports. OUr main wait and see right now is whether this has spread to the lymph nodes. I spend the vast majority of my time trying to read about the diagnostic and treatment options. We all spend a large portion of the day going to hospitals and meeting doctors. We have yet to find a cohesive team for cancer that is within reasonable distance and covered by ECHS (Papa's army insurance). There is simply little demand for such a thing, so there are many dots to connect.

The majority of the questions to the doctors has been coming from me directly. Papa has entrusted Vikram and I with the decision process and has asked that we choose the best doctors/team based on our own knowledge. It has come to me, primarily, to take the lead in the medical details. Vikram has been a little bit occupied with the logistics of us being here, and Ritu will not arrive until august 20th and I do not know for how long she will stay.

We hope to make final choices on surgeons and hospitals very soon, within the next week or less, and Papa would go in for surgery very shortly. At this point, it appears that papa will have at least 30-40% of his oral tongue removed, along with at least partial neck dissection of his lymph nodes, and possible radiation therapy. We don't anticipate chemotherapy as being necessary at this point but will not know for a few more days yet, and beyond that we must assume the surgery is a success and no cancer is presumably is left over.

My biggest challenge has been in having the time to read about all of this as well as apply it to Indian standards, which are quite different from the west.

The most difficult and scary part of this is Papa's rehabilitation. I am not yet sure to what extent occupational and speech therapy are available, nor how I am going to communicate well with Papa and Mom (Vik's parents), once Vikram leaves back to the USA. There is a 1-2 week gap in which I would be the only person with them, as Vikram simply cannot stay indefinitely, and papa will probably be unable to speak and mom only understands about 40% of my simple sentences. I am presently trying to order supplements and things from the USA for papa's diet, which will be liquid initially. I am trying not to be too scared and hope in the end of all this Papa will be fine and speaking and eating normally. We are very very cautious about explaining too much to papa about the difficulty recovery surgery will likely bring. We are shielding him from people who openly talk of side effects and outcomes and instead focus him on just fighting. I will very possibly stay longer than originally planned, as I see great need here obviously. VIk's mom will need to be taken care of as she takes care of Papa, and she herself is still recovering from hernia surgery.

Marma,

Have you talked to any doctors about reconstruction after your Papa's tongue is removed? My surgery removed about 30 - 40% of my oral tongue as well, but it was immediately (in the same surgery) rebuilt using tissue from my wrist (a radial free-flap reconstruction). My surgeon was able to preserve the tip of my tongue so once the swelling went down, about a week, I was able to speak fairly clearly as well as drink, and eventually eat, normally. Two months out, no one can tell I had surgery at all, unless they look inside my mouth.

It sounds like you are navigating a difficult maze there. My thoughts and best prayers are with you and your family.

- Margaret

I'm in the same boat as Margaret except I had over half my tongue removed. They did save the tip of mine which has helped with my talking. I had my surgery May 19th and I am finishing up radiation and chemo this week. My tongue was also reconstructed from my forearm and I had a bilateral neck dissection. I continue to amaze my doctors and my speech therapist with how well my speech is, so it is quite possible that your Papa's speech will be good. If you have any questions you can private message me or email me.

Stephanie,

We had surgery on the same day, but you got into radiation much faster than I did! I won't finish until 8/18. How are you holding up?

- Margaret

Yep, they got me into radiation as soon as they could after my surgery because I healed up fast (4 weeks). I'm holding up okay. This past week (wk 6) the skin on my neck started to get splotchy and Thursday it started peeling. Also, the mouth ulcers kicked in this week - I have six that I can count and one of them is the whole side of my tongue. So I'm not eating by mouth anymore (I had been up until last week, and I was also doing some feeding via the peg tube - my husband was very concerned about me losing weight), just drinking tea and water. My taste is still really good. I can taste everything except sweets. Up until now my doctor's were all so amazed at how few side effects I was having. I have a lot of mucus and take Robitussin to keep from gagging on the stuff I cough/ hack up! It doesn't keep me up at night but it takes everything I have to keep from throwing up when I wake up because the mucus gets stuck in my throat. I was originally scheduled for 32 treatments but this week we added one more just as a precautionary so I will have 33. I haven't lost any weight and it's making my mask tighter and tighter every time I get in it for treatment! But I guess it's better than the alternative! My last day of chemo is tomorrow!! Yippee!! How are you holding up???

margaret, i was told by our ent surgeon that papa's surgery might end up removing such a small area as to make your type of reconstruction unnedded. but now after seeing that you had only 30-40% removed and papa will likely have at least as much removed, this is a red flad for us to try hard to find a surgeon with experience in this kind of reconstruction. if you would be so kind as to provide us with your surgeons name, as a last effort we might even have our own surgeon contact has as a consultant on the matter. a private messgae will reach me faster or you can email [email protected]

thanks and god bless.

I just had a large portion of the front of my tongue removed, including the tip, and a free flap installed from wrist tissue. Despite the fact that everything is still swollen enough that I am on PEG tube feeding, I can talk reasonably well, even on the telephone (in fact, I seem to be having more trouble face-to-face than on the phone; perhaps the listener is distracted by seeing me struggle with some sounds).

The front of my tongue is not mobile, but still locked down behind my teeth.

I haven't had the speech therapy yet, but have the most trouble with the letters L and G.

BTW, the surgeons tend to divide the tongue in several sections and then subdivide those, so a statement like "20 percent of the mobile tongue will be removed" actually means something like 20% of the front 30%, not 20% of the entire tongue.

dad is home from surgery. he was talking the day after the surgery. he sounds a bit muffled and has trouble ith a few letters. about half the tip was removed and the surgon said he should end up with "marginally" affected quality of speech. so right now after one week we understand about 80% of what he says and i expect this to become 100% in the next few weeks or else I am going to be quite POd and demand to know why a reconstructive surgeon wasn't brought in. hope you're improving as well.

Yes he will be able to talk. LOL We do sound a trifle funny trying to say some words, but life goes on and we end up laughing at some of our words.

The more he talks the better he will get at it and the more you will be able to understand!