Hi Everyone - I have to first thank you all. I have been reading the posts for the last month or so and while scary they have really given great advise and comfort at time. This is a situation I never thought I would be in, but I know having other people to talk to is healthy and will help. So thank you all!

Back story - I am the caregiver to my boyfriend. He is 37 non smoker, light drinker but did chew for years before we met. We have only been dating 6 months. The first time he had a mass removed on his tongue - clean margins and radiation to the right side of his next - precaution no cancer found there. He has been following up with appointments to his oncologist and each time was given a clean bill of health but no PET or Scans done to re-check.

In Early December he found a bump on his tongue - like a pimple close to the middle - not on the side or place of his first mass. He waited a week and decided to make an appointment with his oncologist - who said he did not think it was cancer but by the urging of my boyfriend took a biopsy. BTW - this oncologist did not think his first mass was cancer and did not biopsy for over 6 months of failed treatments. His results came back the day after Christmas and indeed it is cancer. He had a MRI and PET scan done the next week. We got the results at the beginning of Jan. After meeting with his oncologist and radiologist - We made the decision to go get a 2nd opinion with Moffitt Cancer Center in Tampa (we live about 1/2 hour away) Unfortunately, they could not see us till last Friday - 1/23. We were told by his previous radiologist (because his oncologist was of no help and I kick myself for not going to Moffitt first) that he would be a good candidate for robotic surgery. However, after meeting with Dr, Otto ( who I really like and have done a lot of research on) that no that is not the case - the tumor is to large and advanced. This news was a emotional bomb and shocker to my boyfriend - unfortunately he is in a deep depression (even with meds) and has not done the research that I have. She recommended removing a large portion of his tongue - I am assuming but did not want to ask while he was so much how much - It could be the whole tongue. And take the skin and vein in his wrist to rebuild a tongue for him. Also they will be taking the lymph nodes on his right side to hope that the cancer will not travel and that one node looks enlarged.

He is scared to death and I have to admit I am as well. Dr, Otto used words like cure and she feels confident in saving him and giving him a good quality of life, speech and swallowing. After do a lot of research I feel confident she would not say this if it was not possible, but we all know this cancer is a shifty one. He is scared he will never talk again or at leased not be able for people to understand him. As a project manager he is on the phone a lot so he will be taking off a large amount of time from work.

Sorry this is so long but it has been a LONG 2 months and I know we have a LONG road ahead of us. His surgery is sceduled for 2/19 (3 weeks away from our first visit to Moffitt) the Dr. said it is a all day surgery and that is why it took so long to schedule it. This is also a concern. He said the mass gets larger by the day and is bleeding now. He is afraid the next 2-3 weeks will change the outcome. The Dr. said she did not think that as the case, and if she did she would refer us to another specialist that could do the surgery sooner. This also scares me and I feel if we got into Moffitt sooner we would not have to play this horrible waiting game and he would have a better outcome. Sorry for all the "what if's" I am also concerned about his mental state - they 2x his anti depressents but he is very low and just wants it over with. I am really the only person that has research so much and was not completly shocked by the large surgery he will now have to have. Thank you for your support and any advise you can give - Danielle

Danielle, you are a champion caregiver. He is lucky to have you while being very unlucky to have to face this cancer so young.

Dr Otto sounds great. I suppose you have reminded him of how positive she was.

Many of us have had partial or whole glossectomies and have gone on to lead normal lives. The flap surgery is surprisingly successful.He will have a surgeon to remove the cancer and a plastic or reconstructive surgeon to construct the new tongue. While the process is a real ordeal for the patient the hard bit is over by about 8 days. It's difficult because the patient has numerous drain bottles, a feeding tube, a tracheotomy and so on which by the end of the week are in an almighty tangle. They take about one drain or tube out a day and by Day 8 you're almost free.

I wonder if ordinary anti-depressants are enough. Has he talked to a counsellor or Cancer Society person, someone skilled in understanding the fear and mental pain he is going through? Quite often a person is buoyed by the fighting spirit of the doctors, feeling glad that a detailed plan of action is in place. If this isn't the case then I think he needs some sort of professional help. I'm not in the US and don't know how your system works but I would ring the specialist nurse and ask for help or see his GP to ask about options for more psychological assistance. I don't know about the 2-3 weeks wait. I would tend to trust the doctor here. I've always had to wait longer.

Danielle, you two are going through the scariest part of the process right now. You've already taken the necessary actions that are actually under your control and now have some professionals looking after your man, who is very lucky to have you looking after him. It's very tough not to spend a lot of time worrying, but worrying does nothing to benefit him. Easier said than done, but I tried very hard to realize that others (who are all professionals that know a lot more about this than I did) are working hard on my behalf. The surgery is coming. They're going to remove all of that nasty stuff and take the steps needed to fix him up.

I'll skip the detailed bits about the surgery, additional treatments (e.g. radiation) and recovery that I've posted about on other threads and get right to the good news. If you want to do some reading to know in great detail what to expect, check out some of the posts from other users like CherylD. From my own experience and that of a few others in these forums, I'd suggest that it is very likely that in time, he will be able to return to his duties as a project manager and still be able to speak reasonably clearly - enough to be easily understood and still be effective at his career. The process will take awhile. Several months, most likely, but it gets better! I'm told by others that they can understand almost everything I say. Occasionally I have a tough time with certain words or letters. Worst case, I just spell it out with the phoenetic alphabet (you know - Alpha Bravo Charlie, etc). If I have to speak a lot my tongue tires, so have to drink some water and then I'm more easily understood once again.

Hello Danielle, I know how very scary a recurrence is. Terrifying.
I am so glad that you did take the step of getting that 2nd opinion at Moffit, which I believe is a Comprehensive Cancer Centre, a CCC. Research has proven improved survivorship and outcomes , if treated at a CCC. Good on you for doing the research. For myself as a Caregiver, doing the research helped me so much. I coped better when informed and was then able to pass that positivity on to Kris.
I would use this next few weeks to do lots of positive things with your Man. Get out and do those activities he enjoys. Even a gentle walk in the park is good for the soul. Gather your families around for support, eat and laugh together.
Yes, really, get him to eat lots. Any food he likes and as full of calories as you can. He will lose weight through treatments, so gaining now is a bonus.
My Kris had a Total Glossectomy, complete removal of the entire tongue, ( also removed his voice box). Kris swallows all his nutrition, does speak, and has a good quality of life. There is much for you both to be positive about, though I do understand how difficult that is at your current stage of treatment.
Know that we are all here for you both.
Tammy

Welcome to OCF, Danielle! Im so glad you have found our group to help both you and your BF get thru the upcoming surgery and recovery. Sounds to me like you are doing an excellent job being a caregiver. I know its not an easy task!

Your BF is being treated at one of the country's top comprehensive cancer centers (CCC's). I have heard excellent things about the physician you mentioned. Your BF is very fortunate to have gone to Moffitt! This could make a huge difference in his outcome.

I know the sounds of having a glossectomy are frightening. Being at a top CCC, there will be tools and methods used which smaller local hospitals arent as familiar with. The surgery will be a long one and waiting will feel like torture. His hospital stay will likely be at least a week. He may have a trach tube on a temporary basis. Being treated at a CCC, there should be speech therapists available to help him adjust to all the changes. You can even ask if they have a visiting nurse program to stop by and check on him when he first goes home after surgery.

I would suggest having him eat as much as possible of all his favorites now. His eating will be a struggle for a little while after this major surgery. In time and with therapy he should bounce back. It will take time to adapt to using a new tongue but he is young and should do just fine.

As far as his outlook, if his current medication isnt working get it changed. At a CCC there should be special counselors to talk with to help your BF accept his situation. Being diagnosed once is hard enough, having a recurrence can really do a number on a person mentally. Its nothing to be ashamed of to need meds to cope, even some caregivers need a hand.

To me it sounds like you are a wonderful, supportive GF. He is lucky you are in his corner. Round up all the close friends and relatives who are also a positive influence in his life and hopefully they will all pitch in and help you keep him on track thinking positively. They can help in many ways, including taking turns staying with him round the clock while he is hospitalized. He shouldnt be alone, especially if he is not able to clearly communicate so an advocate should be by his side to help. A dry erase board will also be handy.

Hang in there!

HI there... waiting sucks... I was all - RIGHT NOW - when i discovered I had this cancer. And I have had almost half of my tongue removed. It is a long surgery, but Moffitt is a good hospital and very good with OC. My surgery was 14 hours long and they did the same - wrist flap. I do film work and let me tell you I wouldn't be able to if I couldn't speak clearly. I still notice the occasional lisp but no one else - as far as - I know does. As long as he has a terrific plastic surgeon to rebuild he should be good. I was highly motivated to get back to normal and I have to say 4 years out. I think I am honestly about 95% there. I am still numb on certain parts of my neck from the dissection and I am not sure it will ever be normal but it is okay. I can at this point - even after having undergone rads - eat pretty much anything I choose. I do still have a bit of a problem with dryness of my mouth from my salivary gland being cooked but that's gotten considerably better over time. I chew and swallow on my right side as my left was what was rebuilt but once the swelling went down a while after - surgery my tongue began behaving rather normally - though I do still need water or liquid to wash some stuff down. There are people here who've had total glossectomies and they can speak and be understood - tell him to do whatever he has to and work his ass off to get back to as close to normal as possible. It can be done.
Your surgeon sounds terrific. Call her and tell her he can be ready for surgery if there is a cancellation or what not.

My surgeon said - cheryl NO ONE cancels my surgeries. I told him at the time - that no I was sure they didn't ... but people do get sick and there are snow storms and people's statuses change etc... and it didn't happen for me but my cousin who was also operated on by him actually got in on a cancellation. So it does happen. Make sure everything pre op that has to be done is done and then tell her that he can be there in an hour if need be. No one likes to waste OR time.

He will get through it. It will take a bit to recover - but he will be fine and amazed at how well he will be afterwards. Also he will likely need some physio on his shoulder and arm depending on the extent of the neck dissection. They sometimes cut the muscle. But that too is recoverable. I am about 98-99% in my shoulder and arm. (only notice it at the gym...just a small amount of weakness)

Read up on the surgery and give him some of the details. Otherwise it will be a shock to him but assure him many have traveled his path before him.

Yes this cancer is tricky. So to me time is always of the essence as is hitting it with everything they have. If they suggest rads again (particularly to the neck) then he should definitely do it.

hugs. You're terrific.

Thank you everyone for the amazing responces! Each one has been so helpful and informational. Yes,we are fortunate to have Moffitt in our backyard. Eveything I have read about Dr. Otto has been outstanding! She had a fabulous bedside manner with him. She explained the procedure and the reason we had to wait to have the surgery is because it is a all day long surgery and she will be working with two other surgions - one her partner and one a plastic surgeon. She was surprised by his shocked response to this news, and I exlained that he was told robotic surgery and this is obviously a lot more invasive. She had a social worker come in and talk to us. He really wanted nothing to do with her - poor girl - He really only talks to me about how he is feelng and his fears. I have to prompt him to talk about it. He is just very stubborn in general. However, Moffitt will do phyc therapy as long as he is an active patient with them. I will be calling to get it setup. Yes,his Dr knows he can be there witin a hour if they have a cancellation. She said do to his age and health he would be at the top of her list if a cancellation happens

As far as eating he has so little weight to lose. He is 6 foot and 170-165 - he lost 30lbs the first time, and just gained it back recently. His appitite has gone down - I think in part to the pain meds. Plus with his tumor open and sore - it hurt to eat a lot of foods. I have made tons of mac and cheese, soft tacos, chicken,eggs,bacon and stuffing - he is also a picky eater but when he does eat he eats a lot. I got him boost,but it is like pulling teeth to get him to drink it. i make sure we have tons of ice cream in the house and always bring home milkshakes - which he loves! I actually asked him if he wants me to bang my head against the wall. At the very least he must be ok with me gaining 10 lbs since diagnosis trying to cook fattening foods for him.

I realized not keeping him busy adds to him being depressed. We will be taking a little getaway to Universal this weekend. Hard to be depressed in an amusement park!

Has anyone here done research on vitamins that help doing this process? Maybe with energy? Also, I did some research on anti-cancer diets - no sugar, carbs,lots of fruits-veggies and proten. It says it can help to stop the tumor growth. I have no idea how I could even accomplish that with him and his picky appitite as its.

Thaks - Danielle

I had a tough time swallowing vitamin supplements in pill form, so didn't really use anything like that prior to, following surgery, or during the time period that I was getting radiation. What I did do, was use more whey protein (either just mixed with water, or added to a milkshake), and use my juicer more often. It's very difficult to get your vegetables when your mouth is in this state, so I supplemented my diet with veggie/fruit juice. I scoff at the Fat, Sick and Nearly Dead guy and his reliance on juicing ONLY for his daily caloric requirements, but I do believe that adding juice to your diet (in conjunction with as close to a normal, balanced diet as possible) is quite helpful. Now that I can eat mostly everything again, I don't use my juicer as often, but still like to crush up a nice green juice whenever I realize I haven't been getting enough veggies lately.

Eating enough calories and the correct balance of nutrients will go a long way to maintaining a decent energy level. If he doesn't already know, calculating his "maintenance calories" will give you an idea of how much he should be eating. For a moment, I'm going to ignore the effects of the cancer and assume he's healthy, and NOT needing to put on weight. The numbers change based on activity level, but I'll assume for a moment he's not all that physically active at this point. A 37 year old man at 6' & about 170 lbs needs approximately 2100 calories. If he exercises very much at all, that number goes up. When I was starting to look at cleaning up my diet, cut some fat and add muscle a few years ago, I found this calculator to be helpful. Along with the knowledge that your body needs an approximate breakdown of 20-30% fat, 20-30% protein and 40-60% carbohydrates, I was able to understand what my body needed for fuel for me to reach my fitness goals. For tracking calories, I didn't really go overboard, but found the "myfitnesspal" app to be quite useful as a learning tool. After tracking for a few months, I was all set and knew how much I needed to eat (or sometimes not eat) based on how many times I was on the water that week, and how intense my practices were. Since I was trying to add some muscle, I tried to add maybe a half a pound to one pound per week. One pound is 3500 calories (well, that's disputed but the number is close enough), so I aimed for an extra 500 calories per day above maintenance. I believe that my fitness level helped make my recovery go a whole lot quicker than what it could have been like.

Now earlier I said I was going to ignore the effects of the cancer. This process of the surgery and subsequent treatments is going to be very physically taxing, and he'll have to consume even more calories in order to maintain weight and feel reasonably energetic. I didn't find any concrete numbers I could plug into my formulas that suggested how much extra energy is expended/required, so all I did was estimate what I was eating, and compare to what I saw on the scale and in the mirror. I'd guess I added maybe 1000-1500 calories per day on top of my regular maintenance calories, while I was undergoing radiation treatments, and managed to keep my weight fairly consistent and not feel too depleted to get outside for a 20 minute walk, or something like that.

Edit: Oh, should also mention that the old idea of sugar feeding cancer is somewhat of a myth. Here are a few sites that suggest otherwise: Canadian Cancer Society and MD Anderson

Hi Mysonny,
First of all, you are a terrific caregiver. Believe me, they need your support right now.
I used to make all kinds of different soups for my dad - potato, spinach, carrot, eggplant, red beans, corn etc.(it was the only thing he could eat post surgery. Also, making sure he gets enough calories is really important. Stock up on protein cans - the flavored ones tastes good. Avocado juice with chocolate condensed milk is another thing that is good and high in calories.
Some research shows that soursop, wheatgrass, and aloe vera has helped in cancer treatment (building metabolism, immunity etc).

Good luck on your journey. Keep believing and have faith that everything is going to be okay!

Hugs

Hey - boost has a bit of a stigma particularly to someone young and somewhat in denial . Maybe grab a good protein mix and add some ice cream, milk and a scoop of veggie greens to it daily - you can toss in anything. fruit yogurt? Protein will help him heal.

Since you don't know if he's going to need rads afterwards I would wait on the vitamins and supplements for the time being. hugs and best of luck.