Just diagnosed

Hi, three years ago, I had a 10 year old and a 12 year old when I was diagnosed with stage 3a cancer.  So I can understand what you are feeling. But medicine is good now, and getting better every year.  Don't look at old statistics, they just aren't accurate.   You will get through this.  I regret letting my 12 year old know how scared I was, how concerned I was about the long-term consequences.  (I was able to avoid worrying my 10 year old, but my 12 year old was much more aware.)  Try not to worry them more than you have to, if you can avoid doing so.   There is time later to have serious conversations, but hopefully that will never be necessary, and you will get through treatment and be in remission soon!

Hi my wife was just diagnosed this past week with tongue cancer 3 mm long left side with some swelling in lymph's(said they won't kno how deep until they go in) and that I guess determines prognosis for reoccurrence . Rad onco says surgery and 30 days rad, meeting w/ med onco & head and neck surgeon today. i have no idea what she/ we r infor but the pain is relentless and unberable now, not being able to help or take it away from her is brutal to have to watch. Oxy and mouthwash, lydo only buy 2-3 hrs relief. Shes already lost 15 lbs because the mouth pain of swallowin/ chewing is intolerable. I guess in looking to see if anyone has an idea of what is coming regarding what i can expect to better understand what treatment looks like so I can better support her / ease her suffering. also, does anyone have experience  with Sloan Kettering ny? I realize this is a bit all over the place but still trying to wright the tailspin and formulate a plan in her best interest. Thanks very much, regards

Thejoker53 said:

Hi my wife was just diagnosed this past week with tongue cancer 3 mm long left side with some swelling in lymph's(said they won't kno how deep until they go in) and that I guess determines prognosis for reoccurrence . Rad onco says surgery and 30 days rad, meeting w/ med onco & head and neck surgeon today. i have no idea what she/ we r infor but the pain is relentless and unberable now, not being able to help or take it away from her is brutal to have to watch. Oxy and mouthwash, lydo only buy 2-3 hrs relief. Shes already lost 15 lbs because the mouth pain of swallowin/ chewing is intolerable. I guess in looking to see if anyone has an idea of what is coming regarding what i can expect to better understand what treatment looks like so I can better support her / ease her suffering. also, does anyone have experience  with Sloan Kettering ny? I realize this is a bit all over the place but still trying to wright the tailspin and formulate a plan in her best interest. Thanks very much, regards

Welcome to the forum. Sorry, you have to be here but folks here are a great help. I too had tongue cancer, a small spot on the left side of my tongue, and was operated on by my ENT and he said he had gotten clear margins which means nowadays they can cut a section out and have the lab test it right away and if cancer is still present the cut some more till they have clear margins. I am not sure the mm size of mine but it was not big and I received no radiation follow-up. Since I am old I can't relate to mm so I looked the conversion up on the net. I got this 3mm= 0¹⁄₈in. This seems pretty small and I would question the rad follow-up with her docs to see if it is really necessary if they get clear margins. Fewer rads are good no rads are best. But you also mention the lymph nodes has it spread to the nodes? Usually, when cancer is suspected they have you get a CAT Scan with dye of the head and neck area so they can see cancer or what's going on in that area and it help plan treatment. They also take a biopsy to determine cancer or not and what kind such as squamous cell. Then your wife should have had a PET scan which sometimes is referred to as eyes to thighs scan. They inject a radioactive dye and scan the whole body to see if cancer has metastasized anywhere else in the body. This is a pretty standard procedure of things and hopefully, she has had this done or scheduled.  Certainly, we hope no other cancer is seen and they are dealing with only the tongue. When this hits you it can send you in a tailspin for awhile. Please check out the Superthread at the top of the head and neck page-much help there. Again this seems small but you don't know how deep it goes. It is small but painful so urge her docs to expedite treatment if possible and in the meantime give her stronger meds such as Oxycodone HCI or liquid hydrocodone or pain patch or something make them aware of her pain. It is easy to say but not to do and that is to settle down and take it step by step. Always have 2 of you at all meetings as 2 sets of ears are better than 1. Always take a tablet to make notes because if not you forget things. Video or sound record meeting if they will let you. I looked up Sloan Kettering here  https://health.usnews.com/best-hospitals/area/ny/memorial-sloan-kettering-cancer-center-6213060 and it is ranked #2 in the nation for cancer and ear nose and throat treatment. Hope what I have typed helps a bit=Wishing you the best-Take care-God Bless-Russ

As you know, being Dad sometimes means you do things...

I received advice going into treatment that I took and it was a good thing: "Let others help you; not for your sake, but theirs."

My son is one of those drivers who drive me nuts.  Accelerate, decelerate, accelerate, brake, accelerate, brake... seasickness here I come.   So, I'm a little nauseated anyway and I would LIKE to drive myself to radiation (I'm perfectly able), but my son wants to help.  I grab a garbage bag "just in case" and let him drive.  He's proud of how he helped his Dad.

My middle daughter took me to each infusion.  She would do crossword puzzles with me and keep me company talking about "things."   I would often rather have just had a blanket and a nap.  She's becoming an Oncologist to help people like Dad.  She was part of my team.

My youngest daughter came home from college for Christmas and asked how she could "help."   I let her read "A Christmas Carol" to me and go get me things.

They all are very pleased with how they helped Dad. 

I know your daughter's only 12, but there's stuff she can do to make HER pround of how she helped Dad get well.