Neck dissection, dental extractions, and tongue excision coming up..what to expect?

Amm6187

Hello everyone!  First I'll start with some basic information about my situation.   I'm a29 year old female married with 3 wonderful kids ages 10,2, and 6 weeks. I did smoke and rarely drank.  IN September 2016 I was diagnosed with squamous cell carcinoma which presented as a sore on the left side of my tongue.   I was 4 months  pregnant at the time so all the dr did was surgery and when it was tested the area around was negative. I did not need reconstruction or speech therapy.  I have since had my child and while doing routine follow-up an enlarged lymph node was found (leftside level 4 1 in). Negative for HIV.  Biopsy was done and tested popositive for  SCC.  I'm scheduled for a petscan on 5/3 and surgery on 5/5 where he will remove more of my tongue, pull 16 teeth, and as of now all lymph nodes on the left. He said he will cut from my jawbone to adams apple and to my chin.  How long was your recovery time after leaving the hospital?   I'm trying to prepare myself for not only the surgery but what lies ahead.  My dr hasn't said radiation or chemo yet( im assuming he's waiting for pet scan results and he doesn't want to freak me out anymore than I already am ) but from what I've read that seems to be the standard if it spreads. Am I correct? Will I be able to maintain care by myself with 3 kids or not?   Is it true that patients under 35 typically have more aggressive forms and a higher mortality rate?  Any information or advice would be greatly appreciated. 

CivilMatt

welcome

Amm6187,

Welcome to the H&N forum sorry that you are here, but I hope that we can help.

I was stage IVa, scc, bot, 1lymph node, hpv+ (surgery, rads & Erbitux).  My jugular vein dissection and tongue surgery were not to bad and I recovered quickly.  Luckily mine had little pain.  Your plan is a bit more so I would expect more discomfort, but not to worry, they load you up with all kinds of meds.

I don’t know that being under 35years old will be a detriment.  Matter-of-fact your age may make the journey easier. Many younger H&N members handle the treatment side effects better than the older folks.  I would think that your team will formulate a great plan for you and you can continue on and plan for a long life.

Matt

stevenpepe

First off, try not to worry

First off, try not to worry about mortality rates. Everyone is different and so many factors are involved. Chances are you will be fine. Think positive.

I had tongue cancer, left side, just like you. I have a light history of smoking but it goes back over two decades. 

I'm wondering why your teeth are being pulled if your doctor hasn't mentioned radiation. By the way, if the node is positive for SCC, you will have radiation, maybe chemo with it, but definitely radiation. Are your teeth in bad shape? They pull them prior to radiation to avoid dental work afterwards since radiation can make it difficult to work with your jawbone. I would inquire about that. I had 2 surgeries, and two separate radiation treatments and none of my teeth were pulled. I also have healthy teeth, so that matters.

I assume you have a husband or partner helping you with your very young children? Radiation and chemo take a nasty toll on your energy and stamina so make sure you have adequate assistance with your children. This I can assure you.

Amm6187

CivilMatt said:

welcome

Amm6187,

Welcome to the H&N forum sorry that you are here, but I hope that we can help.

I was stage IVa, scc, bot, 1lymph node, hpv+ (surgery, rads & Erbitux).  My jugular vein dissection and tongue surgery were not to bad and I recovered quickly.  Luckily mine had little pain.  Your plan is a bit more so I would expect more discomfort, but not to worry, they load you up with all kinds of meds.

I don’t know that being under 35years old will be a detriment.  Matter-of-fact your age may make the journey easier. Many younger H&N members handle the treatment side effects better than the older folks.  I would think that your team will formulate a great plan for you and you can continue on and plan for a long life.

Matt

Thanks for the encouraging

Thanks for the encouraging words.  I didn't think getting on here would make me feel so much better but reading everyone's stories and seeing how much support is here is very comforting.  I've just decided that im gonna take everything as it comes and stop stressing so much.  It will be rough but I'm gonna go with the flow.  What's your opinion on the drs that say changing your diet can "cure" you?

Amm6187

stevenpepe said:

First off, try not to worry

First off, try not to worry about mortality rates. Everyone is different and so many factors are involved. Chances are you will be fine. Think positive.

I had tongue cancer, left side, just like you. I have a light history of smoking but it goes back over two decades. 

I'm wondering why your teeth are being pulled if your doctor hasn't mentioned radiation. By the way, if the node is positive for SCC, you will have radiation, maybe chemo with it, but definitely radiation. Are your teeth in bad shape? They pull them prior to radiation to avoid dental work afterwards since radiation can make it difficult to work with your jawbone. I would inquire about that. I had 2 surgeries, and two separate radiation treatments and none of my teeth were pulled. I also have healthy teeth, so that matters.

I assume you have a husband or partner helping you with your very young children? Radiation and chemo take a nasty toll on your energy and stamina so make sure you have adequate assistance with your children. This I can assure you.

Thanks for the response it

Thanks for the response it helps a lot.  I didn't think my teeth were in bad shape but apparently so. the dentist at the hospital said even though you can't visibly see damage they would need to be repaired or pulled and I don't have dental insurance so I don't see any other choice.  I got the biopsy results over the phone and was a little dumbfounded so IIdidnt ask my Dr many questions and he is out of town until Monday but he had his nurse set up appointments for a dentist, audiologist, and pet scan but im gonna call.  And my mother is going to come stay with us because my husband has to keep working to keep our insurance.  Im just nervous, its less than a week away but im trying not to stress so much.

stevenpepe

You have good reason to

You have good reason to stress having young children to care for. As for recovery times, my first surgery on my tongue and neck took a solid month to get past. Eating was a challenge. I ate pureed foods for about two weeks, then slowly introduced solids. The real issues came with radiation and chemo. It takes a good two months to get back into the swing of life after that ends. With radiation, expect 30 to 35 daily treatments Monday through Friday. Your husband and mom will be critical in helping you and the kids. I'm divorced with 3 teens but they live with their mom. I'm grateful for that because it was too much on my energy levels to deal with effectively.

CivilMatt

Amm6187 said:

Thanks for the encouraging

Thanks for the encouraging words.  I didn't think getting on here would make me feel so much better but reading everyone's stories and seeing how much support is here is very comforting.  I've just decided that im gonna take everything as it comes and stop stressing so much.  It will be rough but I'm gonna go with the flow.  What's your opinion on the drs that say changing your diet can "cure" you?

cure me now

Amm6187,

My opinion is, “simply changing your diet can not cure you, unless the diet change is to rads, chemo and surgery (pick your posion)”.

It is beneficial to eat right and be fit and healthy, but each of us here has a chink in our defense system which let the cancer get a foot hold.  It is easy to think and say, diet alone can be the answer, maybe it can maybe it can’t, but that ship has sailed. If you have cancer, you must (if you desire) go after it with all the tools we have, it is not pleasant or pretty to move through this morass to the “all clear”, but we do have H&N success stories.

Eat right, be right.

Matt

Amm6187

CivilMatt said:

cure me now

Amm6187,

My opinion is, “simply changing your diet can not cure you, unless the diet change is to rads, chemo and surgery (pick your posion)”.

It is beneficial to eat right and be fit and healthy, but each of us here has a chink in our defense system which let the cancer get a foot hold.  It is easy to think and say, diet alone can be the answer, maybe it can maybe it can’t, but that ship has sailed. If you have cancer, you must (if you desire) go after it with all the tools we have, it is not pleasant or pretty to move through this morass to the “all clear”, but we do have H&N success stories.

Eat right, be right.

Matt

Yeah it seems to easy to

Yeah it seems to easy to actually be effective.  Any idea when i will be staged and graded? Does that happen after the petscan or surgery? The pathology report didnt have anything useful on it, just described what the cells looked like. And how do you all know the terminology so well?? I feel like i need a medical dictionary to understand the abbrevations lol

Amm6187

stevenpepe said:

You have good reason to

You have good reason to stress having young children to care for. As for recovery times, my first surgery on my tongue and neck took a solid month to get past. Eating was a challenge. I ate pureed foods for about two weeks, then slowly introduced solids. The real issues came with radiation and chemo. It takes a good two months to get back into the swing of life after that ends. With radiation, expect 30 to 35 daily treatments Monday through Friday. Your husband and mom will be critical in helping you and the kids. I'm divorced with 3 teens but they live with their mom. I'm grateful for that because it was too much on my energy levels to deal with effectively.

Yeah i handled my tongue well

Yeah i handled my tongue well the first time and i am hoping it goes as well as the last one.  Will radiation start immediately or after i heal?  I was told that H&N treatment is on of the more painful to go through would you agree?

stevenpepe

You can expect treatment to

You can expect treatment to begin one to two months out of surgery. I didn't have a lot of pain but the side effects can be debilitating. I had it in my mouth and both sides of the neck. Lots of burning, mucousitis, fatigue, stiffness, tissue fibrosis, pain swallowing, etc. It's not pretty.

Amm6187

Yeah thats what I've read...

Yeah thats what I've read... Sounds like fun lol.  Has it returned?

swopoe

My husband was 40 when

My husband was 40 when diagnosed with tongue cancer, right side of his tongue. It had not spread to any nodes, though. He had surgery first, and then about a month later, he started chemo and rads, like Steven described. We have three children (they were 6, 9, and 11 at the time). I am a stay at home mom, so I kept up with a lot of childcare, but because I was going with my husband to rads and chemo, my mom stepped in to help too. The more help the better. All hands on deck!  My husband continued to work through treatment, and he came out pretty unscathed by the side effects. He was super lucky. My husband was first diagnosed in October 2015, finished treatment in January 2016, and has been cancer free ever since. I wish you and your family all the best.

stevenpepe

My cancer has not returned. I

My cancer has not returned. I was declared cancer free last week.