Today My husband's PET scan shows cancer at base of tongue with mets to two lymph nodes. He had tonsil cancer, squamous cell, with mets to lymph nodes in 2001. Had neck dissection and rads. Cancer in tongue (ssc again) in 2013, no mets. 25% of tongue removed. This time recuperation from surgery will include learning how to speak and learning how to swallow. Dr. will make flap for throat from hand skin. Says will take a lot of determination to learn to swallow. Vocal cords are not involved.

My question to anyone who has experienced this. How long did it take you to recuperate, learn how to speak and swallow again? Any suggestions about blended diets would be helpful.

Thank you, Sheryl

Im very sorry to read your husband has had a recurrence! This type of surgery can have a long recovery time frame with lots of speech and physical therapy. Much will depend on his frame of mind as far as how dedicated and motivated he is to practicing speech and swallowing techniques. Its not easy but with hard work he can make progress. Im sure there are others who have been thru similar things that will come along. Check the food/menu's section for some helpful ideas. Wishing you both all the very best with everything!

Hello Sheryl, I'm not sure exactly what type of surgery your husband is going to have, but I did want to tell you our story - a brief version.
Kris had a recurrence in Feb 2012, again of his base of tongue tumour. He had long complicated surgery. Part of this involved a total Glossectomy with reconstruction of his pharynx. He talks and
swallows all his nutrition, although he will only swallow liquids.
I will say that the first 3 months postop were difficult. It was a long slow recovery physically. He needed a lot of physiotherapy from the bilateral radical neck dissection he also had at this time. Lifting arms, turning his head and the like. He needed a lot of assistance the first 3 months and then it gradually lessened.
Kris started swallowing in the 3rd week postop. Started with tiny amounts via a syringe, 10mls. He basically tips fluid into his mouth, tips his head back and swallows. The SLT doesn't know how patients like Kris do this. He very quickly progressed to swallowing all his nutrition within 2 weeks. He has a PEG , but has not used this now for over 2 years - scared to have it removed. I think everyone is different and you will just have to see how your husband goes. Your role will be to just encourage him all the way.
A Christine says , there are plenty of posts about nutrition if you want to look them up. Kris still uses an Ensure like product as a base. He makes lots of fruit smoothies using full cream milk, full fat yoghurt, icecream and lots of thick cream. Incidentally his cholesterol levels are perfect for the first time in 20 years. He also uses a Vitamix to blend soups. He has maintained his weight now for the last 2 years.
I hope this helps you somewhat .
Tammy

Thank you. This is a hard one. I'm not sure Charles has the will to make it through it. He is 70 but in otherwise good health. Will follow up later.

What surgery did they say they were going to do re the BOT?

Remove diseased tissue at base of tongue and remove lymph nodes. But it's been our experience the dr always takes more than we thought he would. We do have an excellent dr at an excellent facility in Winston-Salem, NC.

We had a long talk. I really don't think he has the will to make it thru recovery.

Sheryl

And reconstruct the flap that makes it possible to swallow . . . which does indicate the dr will take more. Sheryl

The surgery is actually not a bad recovery - it's far easier than radiation. Hugs my dear.

Charles came through radiation really well. But he is choosing not to have surgery on his tongue again. Yikes. Frightening. Anyone else made a choice like this?

This is a choice about life, or death.
If I understand correctly, his radiation was in 2001.
He now has a recurrence at the BOT.
When Kris had his recurrence and was told that he would need both a total Glossectomy and a total Laryngectomy etc etc. His initial reaction was that he would not do such surgery. His initial reaction was one of shock at what he would lose and fear at what his life would be like post operatively. I think Charles needs to discuss this further with his surgeons to really understand what is involved in the surgery and also to really understand the choice he is making by refusing surgery.
Of course it is natural to be concerned at what life will be like after this surgery. But what will it be like if he does not have the surgery?
We were told Kris would have a most unpleasant death within 12 months should he not go ahead. 2 and 1/2 years later he is well and happy . Life is good. Different. But good.
Please feel free to PM me if I can assist you both further.
Tammy

Thank you, Tammy. His surgeon said the same thing, one year, most unpleasant death. Right now Charles is looking at death as some kind of adventure. I'm getting him together with a group of our friends tomorrow morning to talk. His surgeon is a little over two hours away but we can have an email conversation with him too.

There are a number of factors to consider that only the doctors familiar with his case, his disease, staging and prognosis, can tell you. I just hope that he has a very clear understanding of where the two paths lead. Its a difficult time for all concerned and I hope you are surrounded by the support you need.

Having walked the path with John for close to two years, I have come to the realization that choosing no treatment is not necessarily a choice for a better quality of life. It can be just as painful and unpleasant as choosing treatment.

After meeting with a group of friends, all pledging their support including financial, Charles has decided to have surgery. What a relief. Now I have questions about feeding tubes that I'll post. Thank you everyone. I could not have spoken clearly to Charles without what I have learned from all the brave and caring folks on this board. Thank you.

I'm glad to hear the news, if this was the desired outcome. I'm pretty sure it was and even though it may be tough, we are all here for you guys, also.

LiliFoo,
Are we related? Are you my long lost cousin in NC? :-)
So glad your Charles is going forward with treatment. Best wishes.

A foo-foo here and a foo-foo there...

Please tell me you two don't have any poodles...the ultimate foo-foo dog. LOL

No foo-foo in my life buddy. Just a lot of foo.....l LOL

No foo foo here either! Just a cat, she lets us call her Johnson.

Okay. Surgery scheduled 9/11. Partial Glossectomy and flap, partial laryngectomy, bilateral neck dissection. No PET. Instead Dr. Is inserting a tube through his nose with the hopes that he'll be swallowing before leaving the hospital. If not they may insert a g tube before he leaves the hospital. I'm not really comfortable with this. Any thoughts?

The topic of feeding tubes is a delicate one. For some reason a simple discussion about it can quickly turn into a blaze.

It seems the majority believe it is better to get one early, even if there is no immediate need. Others, me included, feel it is better to wait until you really need it. It can always be placed and working in a day or two.

Ask your doctors their opinion. All mine sided with the wait and see approach as long term swallowing complications can result from the swallowing function going lame from inadequate use.

Some folks are unable to regain their swallow function which leads to long time tube use.

Lilyfoo, in this case he will need a feeding tube. this surgery will a) leave him unable to swallow for a while
b) they will need to check that he swallows correctly and does not aspirate. it is not just a matter of pain and swallowing. there will be anatomical reasons to have the tube. They will not want food on the surgical incision site either.
All in all, this surgery doesnt sound too bad to me and is definitely very doable. I am so happy you all managed to persuade Charles to proceed with this.
Take care,
Tammy

I sure am not taking sides but as a patient and a caregiver, I would opt for the PEG as well, based on surgery and this being a recurrence. I had one and still lost about 80 lbs. I had extreme nausea even tube feeding and ended up with TPN (IV) feeding for 6 months. Likewise, I had 3 bags of fluid daily for 6 months and the portacath was my only hydration source that worked. I'm not sure I would have enjoyed a tube hanging from my nose or taped to my face.

The important thing is that with or without is doable so maybe a discussion with Charles might help him get more on the team for his care. You've done great getting him on board...take that as far as it will go.

Okay. Telling myself to take a deep breath . . . First of all I want to thank everyone for caring so much, it literally brings me tears.

I spoke with his surgeons nurse. They want Charles swallowing within the first seven days, while he is still in the hospital. Charles and I discussed this option and he wants to try to go the nose feeding tube route. He has a 'hang up' with PET and prides himself on making it through radiation without one. BUT he and I will need to discuss further before his pre-op appointment 9/10. During our pre-op apt with his surgeon this will be one of our main discussions and perhaps make a change, insert PET during surgery. My gut tells me he would do better inserted before. I just think better nutrition equals better recovery equals a happier Charles (and Sheryl too).

I think you mean a PEG tube. A PET is the scan done to help stage and determine the extent of the cancer.

Nutrition must be the main focus while undergoing rads. Every single day he will need to take in at the minimum 2500 calories and 48-64 oz of water. This should continue at least until he hits the one year post rads date, even better the 2 year mark. If your husband can take more in thats even better and can only help him get thru all of this easier. I cant stress enough how important intake is!

As far as the nasal tube goes, that can be done at any time. Its not necessary for it to be done in advance like the PEG tube. No matter which route he goes, every single day he will still need to swallow. The muscles can quickly forget how to function. Even if its only a couple tiny sips of water several times during the day, its enough to keep those muscles active and working properly.

Best wishes!

LilyFoo, you got Charles this far, I would just roll with it. If he needs more later, it can be done. It's great everything is a go!

Uptown, My thoughts exactly! Everything is a go, just roll with it. Yikes is this kind of scary though. But we'll be fine, we're in good hands.

[quote]we're in good hands.[/quote]Lilly, You hit the ultimate number one goal to get through all of this. Unwavering faith and trust in your doctors is the single most powerful thing that keeps your mind focused forward through the dark days and back to the sunshine of healthy and well living. Good luck don

Charles went in for surgery today. During surgery Doctor took tissue from base of tongue to Pathologist, weird cells found but no SCC, no cancer. So doctor takes out swollen lymph node from neck, same thing, weird cells found, no SCC, no cancer. So the doctor takes out shriveled saliva gland, still no cancer cells found. He just has a lot of inflammation at base of tongue, running down back of whatever is at top of voice box. Possibly papilloma virus. So, the sew him back together and he'll be in day hospital for a couple days. Doctor says radiation can cause cells to be weird. So, we thought he was having at least a supraglottic laryngectomy, tongue resection, and flap reconstruction today! We have been praying for him, lots of people have been praying for him. Any thoughts?

Hi, Sheryl.

I'm betting that this is not what anybody expected!

I really don't know what to think about all of this. Perhaps they got the cells before they changed over to malignancy. I wish they gave you a better description of the kind of cells that were found.

How does Charles feel about all of this? How is he feeling after his surgery?

I just read through this thread and am joining the conversation now. I haven't been on the boards for a while.

Here's to hoping for the best outcome and that Charles heals up quickly from the surgery.

You take care of yourself, as well!

Much care,
Kerri

[quote]SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014[/quote]From the sig. So he does not have SCC? If so that is wonderful news! That must be as much of a shock (relief) as when you learn they find it. Best news yet.

It's so overwhelming it's hard to even let it sink in. In the back of my caregiver brain is this suitcase of thoughts . . . Like, what is this? What now? Charles is having a party! He is ecstatic. Just before his surgery yesterday we had the what if the cancer is down in your voice box with his surgeon. We had decided where ever it is to remove it. So I spend a few hours wondering what it would be like not to hear my husbands voice again. )-: Then his surgeon comes out looking VERY perplexed with the best news. Guess I better join the party. WOW.

Live in the moment and celebrate this miracle that was dropped in your path! It's too good to not really enjoy and celebrate.

Great news! I don't know the hospital or where the pathology was done, but they can be sent to another facility to get rechecked to see what these weird cells are. Some don't do pathology in the hospital, except frozen section maybe. I would think a final biopsy would come back in a few days?

Yes. The biopsies are being evaluated by another facility too. We are at WFBH in Winston-Salem, NC. I do think the pathologist here uses frozen section. Usually it takes a few days to get the final report. Will let you know what final says about weird cells.

Frozen sections are done during surgery by the surgeon to find clear margins, and where the surgeon may look at samples under a microscope and/or send to the pathologist immediately. Maybe the pathologist comes to the OR, not sure, but I always seen a charge for them on the itemized bill.

http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php

Good luck with the results.

Thank you for the link!

Sheryl,

I am so happy that you are both relieved and happy! It makes me feel so good inside!

I do think that you're doing the best thing by getting a second pathological opinion, so as to set your minds at full ease.

Love,
Kerri

This is great. you have to trust your drs have done their due diligence. I would look into his diet and minimize acidic foods. Plus maybe he has gastric reflux which could cause some type of damage to those areas. Hugs and fabulous

Thank you! I am trying to stay busy, waiting for final pathology report. They are doing a flow cytology so it's taking longer than usual. Sheryl

Just received this from Charles' surgeon . . .
Charles,

Unfortunately the pathology revealed cancer. My advice is to proceed with surgery we originally discussed.

JDB

Gulp . . .

That sucks!!!

Yes, it sucks. However , you now need to carry on with the treatment plan that Charles had already agreed to do. Think of this as just a blip. I hope the surgery is rescheduled ASAP.
Thinking of you both.
Tammy

We have a family reunion in Mid October. The surgeon has agreed to schedule surgery for October 23. Now that he has had a good look inside Charles' throat he thinks a laryngectomy is needed instead of a supraglottic laryngectomy. Bummer. Charles is handling the re-scheduling of the surgery much better than I am. I'll start taking videos.

There is much information to be found at www.webwhispers.org
Re Laryngectomees . I found that site very useful to prepare me for Kris' s laryngectomy. To be honest, it has all been ok. The Laryngectomees I have had contact with talk well. Most have a TEP prothesis put in for their speech. Kris is a different kettle of fish as he also had a total Glossectomy.
Charles will be fine. Enjoy the reunion.
Tammy

Thank you for the link! And your encouragement. It really has meant a lot to me over the past couple of months. What does the abbreviation NED mean? Sheryl

NED means No Evidence of Disease.
We all love a checkup with NED.
Come here and ask questions any time. We are all here for you.
Tammy

I will have a lot of questions as we go. Back to fattening up our patient to get ready for another round. Can't believe how well he is taking this one now. He says it's just a little blip on the radar! Blessings, s

Charles had surgery 11/11, laryngectomy, partial glossectomy, rebuilt tongue with pectoral muscle, permanent stoma, selective neck dissection. ICU for 1 day, still recuperating in the hospital. Don't have pathology yet. Feeding through nose tube (Osmolite 1.5). He is handling the nose tube really well. Complains that his pectoral area is very sore. Surprisingly little mucous. Once his tongue gets back to a more normal size he'll be a lot better. He does have a unique smell coming from his stoma. Is this something that will go away. Blessings, Sheryl

A pec flap can take a long time to heal. Once it heals the smell should go away. If it looks red or like there is any sign of infection get it checked out.

Hi Sheryl, sounds like Charles is doing well.
I'm not sure about the smell.,I don't remember Kris having a smell coming from the Stoma. I presume that he is nebulising saline via the Stoma. This helps to keep the mucous liquid and more easily coughed out. Kris still nebulises every morning.
Did you manage to sort out a means of communication for Charles?
Hope you have him home soon.
Tammy

Glad to hear he is over the treatment, that was quite an ordeal with so many procedures at once. Patience is needed as recovery takes time, focus on one day at a time. Things WILL improve! Don

Went for a visit with surgeon yesterday. Charles passed his swallow test and has graduated to clear and mushy liquids with nose feeds to supplement. He is coughing a lot, I think due to dryness in his lungs. Convincing him to get moisture into his stoma hasn't clicked yet. )-: He wakes up depressed everyday but after a good truthful conversation about how good it is to be alive he pulls out of it. We'll be spending Thanksgiving today (at least an hour or so) with 20+ of our very loving friends. I think that will help him. Will take delicious soup he can eat.

The surgeon did recommend another round of radiation. YIKES. Due to nerve involvement. Don't quite understand yet but will see him again next week and will discuss further.

Hopefully Thanksgiving Day was a nice but short respite. Maybe the doctors feel the surgery might have left some cancer behind so the mention of radiation. Sometimes removing cancer wrapped around nerves and arteries is very difficult so radiation may be necessary to ensure no cancers remain.

Good luck.
Don