Hi, I am 34 and my husdand is 37. He has never smoked, chewed or been a drinker, yet on August 29th 2006 we were told he had cancer. It turns out it was a T2 tongue cancer. The dr removed it and told us he got clean margins and we had nothing to worry about. He said it was all over. He mentioned a CT at that point but never acted on it. Being a pushy wife I bothered him until he ordered it. It showed enlarged lymph nodes with likely mulitiple node involevment. Instead of a biopsy the dr opted for a PET scan, which also popped up hot spots in the nodes. On October 4th my husband underwent a partial radical neck dissection. A NEW dr removed all the lymph nodes on the left side of his neck, which is the same side as the original tumor and then took the first 2 levels out of the right side. He came to the waiting room and told me he was almost positive based on past experience of what these look like that there were at least 2 nodes positive for cancer and that we would need to progress to radiation treatment as soon as he healed. However all path came back clean. We decided to not do radiation. My husband was seen on November 20th for his first 1 month cancer ck. We were told he would be seen montly for a year or so and then not as frequently. On 11/20/06 he was considered cancer free!!! He saw his primary dr on December 6th 2006.......also cancer free!! On December 9th a lesion showed up in the exact place of the original. He had a biopsy on 12/19. Within a week of the biopsy the tumor had completly filled back in and was larger. By January 1st 2007 there were 3 tumors. He has surgery on the 4th of January. The dr took all three tumors out plus 2 cm all the way around them to be sure to get clean margins. When the pathology came back we were devistated. Not only did he not get clean margins, and not only were there not only 3 tumors there were 10! 7 of the tumors were not visible to the naked eye. So now the option of doing or not doing radiation treatment was no longer there. He MUST do it. It appears that the cancer is throughout his whole tongue. The dr's wanted to wait 4-6 weeks after the last tongue surgery to start the radiaiton so that he could heal completly. But, within one week of the surgery he had another tumor! Now the oncologist wanted us to start radiation immediatly! She said "as long as the tumor is a T1 or smaller we can radiate it." So here we are. He now has a feeding tube in place for just in case we need it! I am so scared because the cancers are coming on so hard and so fast. This can't be good! He is young and has no risk factors! What is going on here, why??? We have two young children. I am so afraid that they are not going to be able to control this. I want to be strong for him but I am so scared for me and the kids if this doesn't work. I know that sounds selfish but, as a mom I have to think ahead for me and the kids and what we would do. I do want and NEED him to beat this but I also know that sometimes this is totally out of your hands!!! I am just so scared. He and I have been fighting a lot lately and I know it is the stress of the situation. I am worried I won't be able to be strong when he needs me to!

Grace

Grace, it is HARD at this point, maybe as hard as it ever gets, because later you are going to be so busy just running to keep in place that you will get caught up in the daily tasks of making life happen.
It sounds like you are realistic enough to be worried about your children's future. That's a VERY good thing! Don't ever apologize to anyone for that. It's just being a good Mom!
It also sounds like you are strong enough to fight, so you will be strong enough to care when he needs you.
Take it in baby steps, one day, one hour, one MINUTE at a time, and you will get to the other end of this.
We're all on your side, this is the place to vent as well as being the place to come for information on what to expect, what is average (notice I didn't say "normal") and what is worrisome.
Hang in there!

Best wishes, Andrea

Grace
Im sorry to hear of your husbands cancer.
Some advise do what the doctors want when they want to do it. It not easy and scary road.
If you feel somthing is not happening soon enough, start making calls make it happen.
Good luck

Grace,

I'm sorry to hear what you and your husband have been through in the past several months. Unfortunately, this kind of cancer is hitting younger and younger people, including those that many doctors think are outside the "risk pool". The important thing right now is to make sure your husband gets expert care for his ongoing treatment, especially in light of the aggressive way the tumors seem to be multiplying. Is his medical team at a major cancer center that deals with oral cancer cases on a daily basis? You can find a list of them under "Other Resources" on this website. If you're not at one of these, I would strongly suggest that you get a second opinion from one ASAP.

Many of us here have been through radiation, and it IS tough, but it can be done with plenty of attention to things like daily nutrition requirements, plenty of hydration, and managing signs of fatigue and/or pain. Do you have family or friends nearby that can help with some of your routine tasks to help free up some time for you as you get through this?

Feel free to post your questions here -- there are lots of us who have dealt with this disease in one form or another and can share our experiences and suggestions.

Cathy

My suggestion is to ignore the "why?" (Sometime in the future they may be able to answer that question, but not now, so it's flat just not worthy of spending any more effort on it) and put your concentration on the "what can I do to make it better and easier for him".

That means you have to see that he gets treatment and does his part even when he doesn't feel like it, plus hold his hand when he needs it plus take care of the kids. If that becomes all too much, consider getting some outside help with one or the other.

Indeed, you do sound like a strong person (and keep in mind that even strong people don't always feel like they are strong!!). Keep coming here for support when you need it because that's an important part -- Folks here have been through both sides of this (victims and caretakers), so we understand.

Lastly, if you really concerned about his survival, then the best way I've found to deal with something like that is to actually formulate some mental plans (don't share them with him, of course, unless things become definitely bad) because dealing with alternatives is often much easier than wondering if the alternatives will become reality (again, separating the stuf we can do something about from the stuf we have no control over).

Hang in there,
Pete

Jeez am I tired of these surgically oriented ENT's not following through with a "team" approach. Not even following up with proper scans and declaring you good to go with nothing to worry about. This guy should get this kind of care himself and see how he feels about it. If this had been presented to you properly at the beginning by a team of doctors from different disciplines at a comprehensive cancer center, you would have dealt with all this at one time without further spread of the (still remaining) disease and the emotional ups and downs that you have been put through. We have seen this happen way too often.

Grace,

This site is devoted to helping people like you and your husband in your battle with cancer. We have all been there as patients or caregivers. Please use this site often and ask any and I mean ANY question that pops into your heads. With the tremendious experience available on this site you will get quick responses.

Tell us more about the Rad Tx he will receive; when it will start; what type(s) of chemo, etc.

Hang in there. We all know your world has been turned upside down and things look dark right now. Educating yourself about this cancer and it's treatments will certainly help your mental state which is surely a prominent part of this battle.

Grace,

Hang in there. We will help as much as we can with advice and stories of our own rad treatment and chemo if necessary. As Pete said don't dwell on the why or how you got here. You all need to focus on the daily battle.

Stay strong and keep us posted.
Tim

Grace - I'm sorry you and your husband and family are going through this. It is confusing and terrifying and overwhelming. To whom do we listen? Which of these docs knows the right answer?? IS there a right answer??

Find the docs who can say: "We have treated dozens of oral cancer patients with great success." Don't settle for a cancer team that doesn't specialize in oral cancers. This cancer isn't like many other forms and needs to be treated by experienced specialists. Your doc can refer you to them, but you must ask.

Get more than ONE opinion about what is wrong and what should be done about it. This cancer is aggressive and needs to be hit with all the best weapons available. Don't let your docs be too conservative in their treatment plan - that kind of planning too often comes back to haunt you...

Check in here often. We can often help with encouragement and the benefits of our own experiences. You aren't alone. Tom J

Thank you all so much!!! I cannot believe how wonderful this site is and I wish to God I had found it 5 months ago!

A little more info, Jeff is scheduled for 33 radiation treatments. We will talk to the Dr after his treatment tomorrow and see what the tumor board said last week. Our understanding is that chemo is not really effective for treatment of this condition. Is that incorrect??? He ended up with a feeding tube that was way to tight and had to have it adjusted today after just having it placed on Friday. It was so tight he couldn't even take a deep breath! He is already feeling better yet very sore from having the dr pull and tug on it. He says that even though he has only had two treatments after todays he has develeped a strange taste in his mouth and he feels like the back of his tongue has a strange tingling sensation. Isn't it to early for that??? We are only 2 treatments in?????? He also said he has a weird metallic taste in his mouth. I never doubt him when he tell's me these kinds of things because he is a true Marine and never complains about pain or discomfort, so when he does I know it is real.
Thanks again to all you wonderful people!!!
Grace

Grace,

You will here this phrase over and over so get used to it...We all can react differently to the Tx and meds. I will assume that your H is receiving IMRT rad. That's most common these days. I also felt a slight, and I mean slight, weird feeling after my first couple of rads. My taste started to make things taste bitter at first and by 2 weeks all I could taste was a slight sweet taste which I still can taste sweets, other than choc, better or should I say longer than other tastes.

I have copied many new to rad posters something that I wrote about a month ago concerning my experiences with rad. I have copied it for you below. I hope it helps better prepare both of you for the next 8 weeks or so.

To, BB and Betty,

Hope this may help you in your journey through the dark tunnel. You will emerge.


Before I start they say that everyone can react differently to the same Tx but my experience in reading 1000's of posts from fellow patients is that we all have bad side effects but some have it worse than others. Judging by my readings I fared better than most and I think my somewhat nasty disposition helped me when I needed it most. That said......

It was probably the worst concentrated time in my life, both physically and mentally. I think the mental part is at least 50% of the battle. If you think about it, your neck region is the worst place you could be radiated. They tell you that you must (AND YOU MUST) drink at least 48 ozs water and 2000 cals each and every day. Then they burn your throat so you can't swallow or even eventually talk. So then they give you pain meds but the pain meds make you nauseated so they give you nausea meds and even they sometimes make you nauseated. All the while the chemo makes you nauseated. I also opted for no tube and I'm glad I did but it made it sometimes impossible to meet the daily goals. They basically set you up so that you can't win this battle but you will find your own way that works for you. The nausea was my worst enemy and they couldn't find anything that worked for me. I could open up a small drug store with the meds I filled and took one or two pills. At the end I finally had had enough and stopped taking all meds. I swallowed with the pain but at least I stopped the nausea. My nausea got so bad that it was easier to throw up than to breath so even after I stopped all my meds I went weeks fighting a gag reflex every time I swallowed something. Sometimes I literally held my mouth shut after swallowing just so I wouldn't throw up. It was nasty but that's what saved me and got me over the hump, so to speak.

Here's what basically will transpire:

The chemo may make you sick. The first bag I rec'd had no effect on me but the last 2 hit me hard. That may have had something to do with the weeks of rad I had rec'd by the time I got the last 2 bags, I don't know.

The rad will not effect you until around the 3rd week. Your taste will rapidly go away. At first things tasted bitter, then nothing, then I could taste some sweetness but not all. To this day choc tastes bitter.

Your throat will get sore and you will soon be on soft foods and liquids. REMEMBER your goal is to drink water (48ozs for me) and "food" (2000cals for me) each and every day. They will tell you and your caring friends and relatives will tell you all sorts of things to try. I found Carnation Instant Breakfast VHC which has 560 nutritionally balanced cals in a 8 oz can. That meant I only had to swallow 4 cans of the VHC to meet my daily goal. A life saver when your throat burns like hell. Unfortunately I didn't discover the VHC until 2 weeks AFTER my Tx ended but I'm glad I did and I still use it.

You will be given all sorts of meds to combat the pain and nausea. Don't give up if at first they don't work. Good luck on finding the correct combo.

I did not keep up with my daily water and "food" because of the nausea and then I would get dehydrated and then constipated. Guess what the side effects of those are...Nausea. I ended up in the ER 3 times to get IV fluids. Don't think your body will go for days with little or no food and water while being attacked with rad and chemo without shutting down. Your body will shut down if you don't feed and hydrate it so do your very best to keep up. I found that a lot of people visited the ER during Tx.

I lost hearing in the high frequency range due to the cisplatium and I have been told it's probably permanent.

I lost some hair on the back of my head and I won't have to shave below my chin ever again. I don't have fair skin so the outside of my face and neck faired a lot better than most re sunburn.

Your saliva will began to shut down and thick mucus will increase. I went for a few weeks trying to spit out the thick stuff with no thin stuff to help. I would wake up choking on the thick stuff and when I went to spit it out I would start to gag and then get nauseated. The thick stuff will become less of a problem as the dry mouth becomes more of a problem.

You will start to get really weak and may sleep or just feel like lying around. I stopped working all together for about 6 weeks and just laid in bed all day. Really boring time but I just didn't have any energy and I had the pain, nausea, dehydration and constipation, etc. Your strength is zapped as well. Taking a shower was equal to running a marathon. I stopped driving and really became very anti social. I just didn't want to be around anyone except my wife who as my caregiver and business partner I credit for saving my life. There is no way I could have gone through Tx without her. She gave me the caring love and the tough love when I needed it.

I lost 30% of my body weight and I couldn't afford to loose anything. I was very physically fit going into Tx. Nonsmoker, casual drinker and exercise nut. I road my bike 100 miles a week avg 20 mph with bike clubs but the TX still clubbed me over the head.

I felt like I was in a dark tunnel and I didn't come out of that tunnel until the 3rd week AFTER Tx ended. That's when I started to drink 3000 cals a day and started to feel almost human. My strength took several months to come back. My taste is almost tolerable but the dry mouth is still horrendous.

I am just 4 months out and am able to work from 9 to appx 7:30. Not as much as I used to but better than most at my stage. I am mentally pretty much back to normal and my nasty disposition has come back but I'm not as nasty anymore. When you hit the bottom which I did more than a few times I made many promises and I am trying to keep them. This is a humbling experience.

Again, you may have more or less problems with everything I mentioned but overall those are the main side hurdles you will face.

Questions ?

David

Maybe he can learn from my experience -- I found my PEG worked best when I was sitting, rather than standing, so I would sit in a rocker in front of the TV while slowly pouring the junk down the tube. What annoyed me the most about the process was the time it took to get it done.

Right near the end, I noticed that I could push the tube in and out of the ring in my chest (confirmed that after the Doc removed it -- there is a bulge on the end to keep it from pulling all the way out of the ring without exerting some effort).

I surmise that when standing, the end of the tube was being partially obstructed and it was open while sitting; based on what I discovered too late to use, likely I could have been maneuvering the tube to get a good flow...

Grace, just a reminder- the "junk" Pete was pouring down his tube was hopefully a highly developed nutritional product made specifically for people who need the best vitamins, minerals and calories, but can't get them by swallowing. Jeff will have to endure alot of challanges over the ensuing months, and so will you. Both of you will be tested. Stay strong and continue to ask when you need answers. Amy in the Ozarks.

Amy's correct, the junk in my case came in cans from WalMart and was some kind of store brand; Safeway has a similar product in plastic bottles (slightly more expensive, but easier to seal and discard) and then there are the brand names like Boost and Ensure -- Essentially the same stuf and can be found in calories as high as 350 per container (the more calories, the fewer containers of junk that needs to go down the tube!.

My dietician informed me that three containers have enough vitamins, etc., to satisfy normal adult requirements for the day. To maintain my weight (172-4 lbs) I was consuming seven containers, or 2,450 calories per day.