Hope I'm doing this right - never posted here before and not quite as computer savvy as my wife. Got diagnosis a week or so ago of squamous cell on my tongue and it's been there awhile so I'm looking at stage 4 but Doctor's say it is curable. Not sure how much I believe curable right now, I prefer to call it treatable. Surgery is scheduled for March 17 and will take most of my tongue with it and will be an all day surgery.
It's good to read on this site that I'm not the only one with this and people due return to reasonably normal lives but that helps your thoughts for the future, not for what you are getting ready to go through. Hardest part is what I'm putting my wife through as she really did not ask for this.
Any advice on how to prepare for the upcoming weeks? I'll be in the hospital for a week or two, tell me honestly how bad will it be?
Kent,
Welcome to the site and I am sorry to here of your plight. I had tonsil cancer and no surgery so I can't tell you about the surgery from direct experience. If they add radiation and chemo to the mix, which they often will, several weeks after surgery, I can speak to that. Many here have had similar surgery and I am sure that they will share their experience with you.
Hey Kent
welcome to OCF.A lot of people will be able to give you the information you have asked for,i would suggest you go to the forum list and read Brian Hills information for new users and if you type Glossectomy(tongue removal)in the search engine at the top of this page you will be able to read some factual information.If your wife is computer savvy then get her to join the ocf carers as she will need support as well.Before you undergo this surgery and the following treatment,make sure you have asked the doctors all the questions you have buzzing around your head.Write them down on paper and take them with you to your next appointment.Make sure you have something to write on while you are in hospital as speaking may be an issue at first and it can be very frustrating not being able to communicate.
Your surgery is pretty standard for your diagnosis and you have come to the right place to get support and advice.
good luck
Kent,
Welcome to this site and sorry as well for you having to be here due to your condition.
A year ago on March 2 was when I had my 19-hr surgery, removing 90% of my tongue due to Stage IV SCC (as you would note from my signature). That was followed by nearly 48 hrs in ICU before I was wheeled back to my room, to spend the next two weeks in the hospital.
I guess the first suggestion is to give the members here all the details about your condition, to give you precise advice, especially from those who have been here much longer or have given advice to many individuals. A common suggestion is to put your signature with salient points and dates (you do this by clicking on "My Stuff" on the bar above and selecting "Profile").
After having all the pre-surgery tests and discussions with all doctors involved, I remember being busy preparing all the logistics I will need after being discharged from the hospital and recovering -- nebulizer, portable suction machine, caregiver schedules, chemo and RT schedules, etc, etc. All the items needed to make it as easy and as quick as possible for my recovery. That was the 'material' side of things. There was, of course, the 'emotional' side of things which involved discussions (and prayer gatherings, too) with family members and relatives. In looking back, modesty aside, I was the most emotionally and psychologically prepared among family members, relatives and friends. But I guess that's not unusual for some, if not most, of those afflicted with this condition.
Best wishes to what you are and will be going through.
Jojo
Here is one thing to do for sure. EAT EAT EAT.. You will have trouble with your weight after rads and chemo plus yous surgery and will lose weight like it was water going thru a strainer. Eat your favorite foods plua a lot of calories. You also have to drink plenty of water so you don't get dehyrated. This I do know 1st hand as with the eating. Ilost 70 lbs . You eill probably lose your muscle mass and this stuff all turns to flab. I am back to 170 right jnow after 3 years and weighed 220 to start with. Ask questions and if it's possible, record what the Drs tell you and if not, take someone with you to write everything down for you. Welcome to our home and a lot of the most intelligent people on earth and in one way or another, we have all dealt with OC. Some not as much as others. Good luck and prayers to you Kent.
Kent --
In particular, look for postings by
misskate, who had tongue cancer and a total glossectomy. She kept
a blog of her experiences that could be very helpful to you. You can send her a private message by clicking on her name in any of her posts.
In addition to the Search box in the upper right corner of the forum pages, which searches only the message boards, there is also a search link in gold at the bottom of each message-board page. That links to the search engine of the main OCF site, where Brian and others maintain pages and pages of information about oral cancer, all vetted by OCF's science advisory board.
Kent,
Don't hesitate to get a second opinion, preferably from one of the NCI designated Cancer Centers. There is a list at
http://cancercenters.cancer.gov/If you are not already at one; please consider getting your treatment at a Comprehensive Cancer Center with a multidisciplinary medical team and tumor board that has well recognized exceptional expertise in your area of Oral Cancer.
All I have to say is EAT EAT EAT. Eat everything you couold ever want now. I did have three surgeries removing parts of my tongue, but all of mine were outpatient, because I did not lost much each time. I did however go through rads and chemo. I can type you through that when the time comes. Good luck and keep coming here for support. It is a great place. I still need moral support somtimes. It is my home away from home.
Hi Kent and welcome. I'll 2nd Angelia's suggestion of eating everything you can. Also, hopefully your wife will get fully involved andf go to all your appointments with you to take notes and ask questions you might be too overwhelmed to think of yourself. A great caregiver can make tjhis journey so much less terrible. Good luck to you.
Hi Kent
I had my tumor removed from the right side of my tongue. Initially the doctors were telling me that at least 50% of my tongue was to be removed and quite possibly a neck dissection to boot. It ended up not being the case, but it just goes to show you never know. My tumor was shrunk significantly by induction chemo which helped my case tremendously.
For me, the chemo and the surgery were a breeze compared to the radiation that followed.
What part of your tongue is your tumor located?
To get ready, I will echo what has already been said, eat like there is no tomorrow as much calories and protein as you can stand. The weight loss is usually quite dramatic.
Keep a good attitude, it will help more than you can possibly know, and by all means ask questions both of your doctors and here.
Kevin
Mine was removed from the left side along with the neck dissection and then 2 months later I had one on the left side that was removed . I had one appear on my left cheek which was removed a few weeks later. Even lost all of my teeth for rads , chemo and then after those, Rad seed implants in my tongue which was terrible and is worse now pain wise. One day I have to put my profile in the right way. I left most things out of it. Hck tho, I am alive and smiling and kickin OC ASS. LOL
that should have been right side the 2nd time,, I am a zitz at times.
Don't know how to thank everyone enough for replying and offering such great advice. I have added points to my sig line as advised and will add as I know more. My wife has been on here too and She won't miss a Dr. appt. for anything, even when I tell her I can go by myself and be fine. I now know you shouldn't even consider going by yourself; you'll forget what was said and not ask any of the questions you think when you're already halfway home. There's so many simple things to do I was reminded of from these replies because your mind just doesn't function as sharp when your digesting all this stuff about the future.
Hi Kent:
The thing I wish I had done before my first surgery was to talk to people who had experience with trachs. To me, that was a difficult part of the surgery, but to others here on that forum they breezed through it. That was the one thing I wish I had been better prepared for.
Not sure about your hospital, but it is very helpful in most cases to have an advocate who knows the ins and outs of all your normal medications, etc, etc. there with you for the majority of the time.
You can pretty much count on having your butt exposed at least once when you aren't counting on it! Check with your hospital re internet access.
Work hard with your speech pathologist. After the surgeons have done their bit - these are the people who are going to get you eating, drinking and speaking agin. You may not feel like listening to them just yet - but it is important to get started on recovery asap.
Take the drugs. There is no special badge given to you for not taking needed pain mediation.
And, if you have a favourite blankey - have someone bring it to you in the hospital - amazing how comforting such things are.
You'll do great - awesome attitude!
Donna
Good to know your wife is right there with you. That's how my wife was and has been, won't miss an appointment with me.
kent,
welcome to the forum.
im glad to see your wife is right by your side thru this. she is going to be a lifesaver for you.
i will repeat the opinions to eat, eat, and eat some more. more is better.
you have found the right place for support and answers.
Kent
All great advice. One more suggestion:
Insist on a TSH level blood test for thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I have already noticed a major difference and my TSH level is down to 3.0 in just two months. shooting for under 2
I hope you never need the results of this pre TX test but get one just in case.
charm
Kent,
I had the free flap tongue reconstruction 3 years ago, but without chemo or rad.-Cancer free since. I will be happy to answer any questions you have about recovery and healing. I feel very blessed that there are these amazing surgeries (and surgeons) to do such unbelievable things!
Wishing you a speedy recovery!
Kent,
By now you have had your surgery. I hope all went well and you will soon be on your way to rcovery from the surgery. Let us know how you are doing and keep us updated.