Just diagnosed

annie4145

Proud Dad- how are you doing?

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!

Logan51

Mikemetz said:

Form a team

I think Logan51 was advising you not to do this alone, even though he/she did it that way.  I formed Team Mike, appointed my loving wife Terry its captain, and let anyone who wanted to help pitch in--under Terry's coordination.  That left my 'job' basically to concentrate 100% on getting through treatments, following my docs' advice, and staying as strong as I could.  Remember, with cancer, "No news" can turn into really scary thoughts when people don't hear from you and fear the worst has happened.  There is no "I" in cancer--it affects not only you, but many other people in your life--in some way.

alone is not an issue

Mike

The footnote was just how I went thru tx, and I was not advising or suggesting anything. There's also no "U" in Cancer, but you got it, as did "I."

Hoping the best for you, proud dad. We are all proof you can get thru this ordeal-like bump in the road of your life. Know you must feel overwhelmed, but just take it one day at a time, and know you will survive- we all do with the first bout of H&N.

 

Thejoker53

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

Hi Russ thanx for the reply,

Hi Russ thanx for the reply, my mistake it is 3 cm which I think is 1.1 inch, pet can they thought looked like soft tissue, but hands on w/ rad indicated swelling as well as she thought she saw some on the scan? Also said the images werent super clear. I will definitely check out your suggestion thanx very much for the insight, just an uneasy feeling when u feel like don't have the control...? thnx very much again be well -jeff

wbcgaruss

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

Hello Joker And

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

LitlCJdoll

Thejoker53 said:

Hi Russ thanx for the reply,

Hi Russ thanx for the reply, my mistake it is 3 cm which I think is 1.1 inch, pet can they thought looked like soft tissue, but hands on w/ rad indicated swelling as well as she thought she saw some on the scan? Also said the images werent super clear. I will definitely check out your suggestion thanx very much for the insight, just an uneasy feeling when u feel like don't have the control...? thnx very much again be well -jeff

Hello The Joker,

Hello The Joker,

I hope you can get consults and / or treatment at Sloan Kettering...

My Primary tumor, Tongue, enveloped my Entire tongue and the Actual Tumor size was::  6.3 Centimeters long by 3.1 Centimeters wide by 2.2 Centimeters thick.

How do we know this? Because it was cut out in a 7+ hour surgery. By surgery day it had invaded my tonsils, mandible, salivary glands and floor of mouth. It was a huge monster.  

He could get a margin of less than a millimeter in the back area, ...  I was only 64 pounds on day of that surgery. That's no misprint, 64 pounds. Today, I am 71.8 pounds.

. Also had bilateral neck dissection and of course a Tracheostomy.   Because he was unable to get clear margins , I have  had 5 recurrences.  I had some chemotherapy and 33 radiation treatments.

I know very well the pain she is having.  As I said, mine was over twice that size and invaded so much...

They did Micro vascular Reconstruction to build me a new tongue Flap.  However, mine has never functioned at all.

My hope is that her tumor is located such that they can remove it, with clear margins.  And any neck nodes as well.  I had 65 nodes out during neck dissection.

Feel free to write me if you ever want to know more about surgery. It sounds like you are in early days of getting all information first.

Take care of each other.

My boyfriend passed away May 18 as result of fighting Stage IV of this cancer, for years....  He displayed such immense strength , tolerance, grace, and a determined effort to get his story out there.  It was my honor and privilege to know him .?

 

Crystal

tbret

Advice I got

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.