New Member Needing Someone to Talk With - Oral Cancer Support

Hello All: this is the first time I've visited this site. I'm very impressed with the interaction I'm seeing, so I'm going to ask for some input.....and I'm not very good at asking people for help.....but HELP!

My wonderful husband was dx'd with base of tongue cancer, T4A in December. He began treatment this week. He will have radiation (43 to complete) and chemo (3 total), no surgery. He saw 5 doctors from Feb 2004 until it was finally dx'd in December when he was 2 days away from brain surgery.....THAT would have been from the previous misdiagnosis. Anyway, we are very close, and I am so frightened. He is just so very weak and tired.....I can't believe how fast that happened. He has been in pain and on narcotics since Feb '04, but the treatments are really difficult. Any info anyone can provide would be helpful.
Thanks,
Michelle

Welcome Michelle, there are friends here for you to lean on. If you take a look at some of the earlier posts (or search button) you will find a lot of answers for you. Feel free to ask specific questions.

Take care

Hello Michelle,

Welcome to OCF. Sorry that You had to find us but am glad that You have. Sounds like Your husband and You have definetly gone through some hell in the past year. Like Mark says, don't hesitate to ask specific questions here and read all You can. We are all here to help each other out in any way that we can. Sending out the positive vibes Your way.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Thanks Mark/Jack: there is alot of great info out here. I'm glad I found this site. I wish I could get Dan (husband) to check out some of the survivor stories here. No interest. He had the first week of radiation this past week....5 rad and 1 chemo. He is having such a terrible time with thick mucous.....any suggestions?

Hi Michelle,
and welcome to the forum. It is a gift to us to be able to help you in any way we can. Most of have had similar issues, pain, narcotics meds, fatigue, weight loss, nausea, etc. Not to mention misdiagnosis. Chemo and radiation only are a quite common treatment of choice for base of tongue cancers. Radiation is no walk in the park but many here have survived and gone on to normal, productive and somewhat enriched lives as a result of the experience.

This is the scariest time.

It is not shameful to ask for some meds for yourself to cope with the anxiety. Sometimes the local cancer society can provide people to talk with you one on one. Ask the hospital social worker as well about support groups and financial help. Since this is a multinational group there bis usually always someone up late to answer questions for you.

We do recommend strongly that you are seeking treatment at a comprehensive cancer center. There are links to the NCI and NCCN comprehensive cancer centers in the resources section here.

Michelle,

I'm sure other people will give you some suggestions for coping with the thick mucous, but the first thing that comes to my mind is advice that I received from Joanna, another OCF member. Roll up some gauze squares (4x4" ones work well, but any gauze will do) and have Dan put them in the gutter between his teeth and cheeks. The gauze will soak up a lot of the mucous. This works especially well at night, allowing one to sleep longer before having to spit or wipe out the mucous. As for wiping out the mucous, Puffs brand tissues are strong enough to do the job, but are soft enough to not irritate.

Since Dan is in a weakened state, I think he would be helped by having a suction machine similar to the ones dentists use. If the doctor writes an order for one, many insurance companies will pay for it. We rented a portable Yankeuer (sp?) from a medical supply company. It was a huge help. Sleeping with the head elevated can help, too. Many OCF members have slept in a recliner for weeks and even months during and after treatment. Having sufficient moisture in the air is also important. Running a humidifier can be a great help in keeping the mucous thinned out.

Rainbows & hugs,

Rosie

Michele, welcome to the site. Sorry you had to find us. It would help if we had more information about your husbands tumor. What stage it is, where it is located, where he is being treated, his blood status (ie, white and red blood cell count and other stats), and any other details would help us help you. Meanwhile, you are both in my prayers.

Michelle,

Welcome to the neighborhood! I can certainly relate to Dan not wanting to come to this site right now. I am sure his head is still reeling from all the doctor visits and the whisking into the start of treatment once everyone agreed what he is facing. It sounds like your wonderful husband has a wonderful wife by his side. That in itself is certainly a great thing. He is very fortunate to have you and your love during this rough time.

Make sure you take time for yourself so you can recharge and be all you want to be for Dan. Also, make sure Dan is taking in plenty of liquids either orally, intravenously or through the PEG tube if he has one. The side effects are much easier if the body remains hydrated.

Arm yourself with as much information as possible so you can help maneuver Dan through the maze ahead.

Ed

Michelle:
Incompetence is what you have had to deal with, it is absolutely atrocious that this man has been misdiagnosed and left to suffer for so long. Unfortunately, he has some miserable days to look forward to soon.
Either consult with a Gastro Doc and have he/she wait in the wings or just go ahead and get a PEG tube. But , don't be fooled a PEG will be required soon into treatment. As you will notice, my tumor was almost a carbon copy of your huusbands. I had no surgery either.
Darrell

Hi Kirk: I'm not very OCF site/forum savvy yet, so I hope you receive this. Sorry I didn't provide enough information. Dan is stage T4A, base of tongue, left side, with 2 nodes involved. He is being treated at the NC Cancer Center at the University of North Carolina in Chapel Hill. He was diagnosed at University of Pittsburgh Medical Center. I don't have the stats right here on the blood work, but I will forward them asap. Thanks again......the people here are wonderful! I'm so glad that I was able to find you! Thanks to all.

Thanks Ed for your kinds words. There is no place I would rather be than with my wonderful husband, I just wish he didn't have this road to travel. He does have the PEG, but was very hesitant to use it. He said (before it was placed) that he dreaded that more than the chemo and rdtx.....I'm sure that thought has changed by now.....but he still isn't big on the idea of using it. I finally convinced him last nite to do ao and he had 2 ensure's and some h2o via the tube. I just wish he didn't hate it so much. Do you think others feel that way too??? especially at first. The way I got him to use it was to tell him that if his weight went to low, the docs would admit him. He is so frustrated and discouraged. I'm going to mention an antidepres. rx to the doc tomorrow when we see him. Thanks again Ed, and I'm sure I'll be back on the forum soon!
Michelle G

Hi Darrell: yes, your dx sounds very much like Dan's. Isn't that incredible that all those docs got his dx wrong? I can not believe it.....and I am very, very angry about it. God only knows what their incompetance has cost us. And to think, all of his symptoms were classic!!! Did you have that problem in getting dx'd?

Dan did have the PEG placed 1-2 weeks ago. Last night was the first time that he was agreeable to using it for a feeding. He had 2 Ensures! He hated the thought of even having one, and is now hating the thought of using it.....I do see however, that moving forward THAT is not going to be an option. I'm glad he had it placed b4 the treatments started.

You mentioned when your treatments ended.....I think this past May. Where you able to work during the treatments? Dan had hoped to, but that is not going to be an option as he is so weak. Well, I have to run and check on him. I'll be back on the forum later.....thanks for everything and will most likely be talking with you again very soon!

Michelle G

Michelle,

Unfortunately, the long drawn out diagnosis of oral cancer is pretty much the norm. Ironically, the five year survival rate is about 90% if caught early but most of us are diagnosed after lymph node involvement. The message that needs to get out is early detection saves lives. Brian Hill, the founder of this site has crusaded for this cause and spent hundreds of thousands of dollars of his money to put all this together. If there ever was a time to request donations, it is with family and friends as you travel this road you and Dan are experiencing right now.

I, too, had a base of tongue primary although it was only about 2.5 cm on the left side with 2 lymph nodes affected on the upper left side of my neck. I had a lump the size of my thumb and I had been to many doctors for about 7 months. I was fortunate because I kept pushing until I could find someone to just remove it. I wish I knew what I know now. I had a plastic surgeon remove the lump and it turned out to be a severely infected lymph node with metastatic SCC. He first told me he thought I had tuberculosis but the path results confirmed cancer.

The PEG is a very rough thing for a lot of us. My teenage boys liked me to show it to their friends the first couple of weeks and our church youth director begged me to show his wife (she freaked...

) but other than that, I kept it pretty low key. There is an option of a device called a MIC Key. It is designed for more active people and only protrudes about an inch or so with a valve in the end so it doesn't leak. That was my biggest issue with mine is when it seeped out on my clothes and I could smell that sour smell all the time. Anyway, you get two tubes that plug into the piece coming out of the skin when you need to use them. One is great for feeding (slightly larger diameter) and the other works well for liquid medicine.

I had a small stomach that was higher than most and from the beginning I always felt full and when I put stuff in there, it usually came back up in short time. As I lost weight, the bulb inside kept tugging and was always a little uncomfortable. We let some water out but it still wasn't what I would call unnoticable.

If nothing else, use the tube for water or pediolyte to keep the electrolytes balanced. This will be one of the most noticable and potentially life-threatening problems other than white and red blood counts. Also, put some Robitussin in the tube every 4-6 hours and the thick goo in the throat will thin a bit. Boost Hi-Protein or Boost Plus has electrolytes, too.

I ended up losing 70 lbs and had to feed intravenously and because my creatinine was a bit low after the first round of Cisplatin, they kept me on IV fluids at the rate of about 3 bags a day for many weeks.

The tube thing may never change. I never got used to it as my new buddy. Hang in there, things will probably get worse before they get better.

Ed

Michelle,
I had a very similar diagnosis as your husband, Stage IV base of tongue with 3 neck nodes. The PEG was my best friend. Once I felt better I would hang it on a nail on the wall by my desk at work and feed while I used the computer. I also was able to play golf and exercise some while wearing it. I am a big proponent of the PEG and would not have been able to make it without the PEG. I got a prescription for the Yankauer machine and kept it by the bed at night and by the easy chair by day. It was a big help.

Please tell your husband that there is light at the end of the tunnel. I feel great and am doing very well now.

Best of luck,
Danny G.

Hi Michelle,

My heart goes out to you and your husband. I know just how you feel, my husband finished radiation treatments on his throat about 2 months ago. My husband did not have a PEG tube, but in hindsight, he probably should have. Keep being encouraging about the tube and let him know how it's going to help him get through everything.

My husband wasn't able to work during treatment either, and he had hoped to, but he is back to work now (about 4 days/week). He actually went back to work about 3 weeks after treatment finished and his job is very demanding physically.

Make sure to take care of yourself too, and realize if he is in a bad mood, it's because he's in pain, it's not about you. My husband was the most easy going guy until he was in radiation, and I wasn't use to that kind of behavior out of him. I had to keep reminding myself he is going through "hell" right now, and he's focusing everything on getting through it. I hope you have friends and family to lean on, reach out to them, they want to help.

You will get so much out of this forum! I encourage you to ask lots of questions. Don't feel stupid, I'm not savy to all this either, and I have gotten more information from these fine folks than the doctors a lot of times. You are not alone Michelle, we are all in this fight together. My husband and I just celebrated our 1 year wedding anniversary, and I told the doctors I want to have at least 30 year's with him! God willing we will.

You take care,

Shelley

Hi Michelle
You are doing GREAT GIRL... Now I've read all the posts above and all the advice is great, BUT the most important thing that You must not lose sight of is LOOKING AFTER YOU. While he goes for treatment, go have a coffee, get your hair fixed, as a care giver and an oral cancer patient, I'm on both sides of the fence, please try to do this, it's very important that you don't crumble...
Sunshine... love and hugs
Helen

Michele, thanks for the information. My cancer was similar to your husbands as I had lymph node involvement and a peg as well. I liked the peg after a while. At first I didn't want it or to use it, but my Oncologist insisted and I have to say that I am glad he did. I lost 25% of my body weight during treatment (50 pounds) with the peg. I can only imagine what would have happened without the peg. So encourage your husband to use it. It got to the point that I couldn't even swallow my own saliva, so the peg was essential. It was especially good for taking meds. All of the pills and vitamins. I just opened them up and emptied the contents or dissolved them in water. Don't try that with metamusal, though, for constipation as it will stop up the tube on the peg pretty well. I did it and it took a day to clear the tube. I got pretty hungry by the time I finally got it cleared. God bless you both.

Michelle,

We got an "Easy Go Vac" aspirator and like Rosie stated it's like the suction machine at your dentists office. It is GREAT and David uses it constantly for that thick mucus. Our doctor sent the RX to the Medical supply company and it was at our door that night. Because the doctor recommended it, it is being paid for by our insurance company. This particular unit is portable and has an adapter to plug into the wall. I recommend it or something similar.
In regards to the PEG, I think that it has been easy to use, easy to clean and conceals well under his clothes.

Prayers to you both.

Brenda ( wife )

Michele: Like everyone else, I am sad that you had to find us but glad you did. My husband has been undergoing treatment since 1/04 and is still in the long process. He is the same, has no interest in the site. However, I visit as often as possible and always, always, get uplifted in my spirits. By getting this, I can go back to him and lift his some, too. I report on what I read on the site, how very many people have successfully beaten back the monster, and report that he is not alone. I know that I can never feel what he is feeling, but know it is important for him to know he is not the only one.

Regarding the PEG tube: it is a wonderful invention! No fun, but can definitely be a life-saver as it was in Rusty's case. Get with your support services for dietary information. We have a good dietician here and I have her home #! She has called me numerous times for updates and was so helpful in finding nutrition to put through that tube! Of course, you wouldn't want to actually "eat" the stuff!

Access every service you can, girl -- you need the support in order to help Dan. You both are on my prayer list, too.

Millie

ok folks, here's my first post. I finally showed my dentist the ulcer sitting on top of
the lump under my tongue Dec. 23rd. By the 27th
I was in an oral surgeon's chair getting the lump cut out. I saw the next oral surgeon in
Birmingham, AL on Jan 4th who sent me for a CAT
scan to check nodes. He then scheduled surgery
for Feb 4th to finish cutting the cancer from
under my tongue as the first surgeon didn't get
it all, so all I know is I'm T1 with an over 2cm
lump. My question is this, is the surgeon doing
right by waiting till Feb 4th to cut out the rest
of my bad tongue? Thanks.

Hello ginny7777, That seems like a extremely long amount of time to me. From Dec until Feb. WOW. I would suggest you call him and demand that he do this sooneer than that. Do not be intemadated by a DOCTOR, This is a must. You are going to have a lot of them in the future. You have to be able to tell them what you are feeling. It took me some time before I realized this. I was always the one that said--okay, okay, okay, then left the office without a clue of what just happened...NO MORE. That stopped years and years ago. This is your body and the sooner the better. This is just my suggestion. There are hundreds of others on this site that may be able to help you with this as well. In the meantime, God Bless You,,,In my Prayers,,,Miss Vicki

Ginny, I don't like the sound of this time delay either. You have not mentioned if you are seeing doctors at a large cancer center or not but I'm going to guess not. Do some calling ask lots of questions and get an appointment with a radiation oncologist. You do NOT want to assume that this cancer is easy to beat. Be certain that what ever is done, is the best that can be done.

Take care

I am to see an oncologist of my own choosing, that is I made an appointment myself in my town just in case they did decide to do radiation so I wouldn't be told I had to drive 60 miles to
Birmingham instead of 15 miles to our local
cancer center. The oncologist is a family friend and I believe the best available without
the drive to birmingham. I am hoping that he will tell me the results of the Cat scan done
Jan 6th. I did call the surgeon and told me
that a new lump seems to be developing under my
tongue, but his reply was that Feb 3rd was still
ok. I have SCC. From what I have read this may
grow faster under my tongue that it might in other areas, but it doesn't spread quickly. The
surgeon had already told me he plans to take out
some nodes - just to be sure - but I'm supicious
that maybe he just isn't telling me over the
phone that there is node involvement. I was told
there would be no need for an oncologist until
after the surgeon was done, is this normal?
Thanks

Ginny,

When my oral surgeon had his first inkling that the spot on my tongue might be cancerous, he immediately did a biopsy, but held off on further surgery until he had the full input of a head and neck cancer team from a major cancer center. His explanation was that if he performed the initial surgery without getting all of the tumor on the first try, there was a risk that the resulting scar tissue could be an impediment in trying to get the rest of it on another try. For that reason, he wanted to have a very good idea of the scope of the entire recommended treatment (which turned out to be both surgery and radiation) before undertaking any type of surgical procedure.

This is not something you want to take on piecemeal. I can't comment on the difference in skill levels between your local cancer center and the one in Birmingham, but I know there are many people on this board who will agree that if you need to drive 60 miles to get the best oncology minds (and technology) in your region to deal with your case, it's a small price to pay.

Cathy

Ginny: as some of the other folks have mentioned, please take a proactive approach with this.....ask all the questions, write them down so you won't forget when you see the doctor. Take someone with you to the appts if you can and have them take notes. Ask, ask, ask. Refuse to accept delays in your treatment. Also, if the center in Birmingham is a better rated facility, you may want to reconsider and make the drive daily.

I drive my husband 60 miles to get to the Cancer Center in Chapel Hill, NC at UNC. We could go to a hospital that is much closer, but believe me, the drive is worth it. UNC has a very comprehensive TEAM of physicians that work on each and every case TOGETHER. They have a Tumor Board that meets every Friday and discuss the patients in the Clinic.....This is the kind of care and detail that you should be demanding.

I am the caregiver for my husband, who has SCC of the tongue also. He is only in his second week of treatment, but was sick for 10 months before he was finally diagnosed with cancer......5 doctors saw him during that time, and they kept missing the reason for his pain. I am now, however, learning very quickly to be heard......I'm his "voice" so to speak, as I doubt that if left to his own devices, he would not be as vocal as I. Part of that is his nature, but part of that is his having to deal with everything that has been thurst upon him with his diagnosis. So, if you have someone that could help you, by either asking the questions, or reminding you of the questions, you may find that useful.
The doctors have the knowledge, but to a huge extent YOU have to be responsible for your care....just BE HEARD and don't give up....EVER! Because YOU can do this.....you will get through it!

Michelle

Ginny, welcome to the site. Sorry you needed to find us. As others have noted, please do not wait to see a team of specialists at a comprehensive cancer center. Even if you have to drive 60 miles one way, which many of us have already done and many more will do in the future, this disease is to aggressive to let it be attacked a little at a time. You have to kill it with a massive strike all at the same time. And in coordination with all aspects of treatment including radiation, chemo, surgery and the kitchen sink. Don't wait. Get a qualified second opinion from a cancer center in the most up-to-date facility you can find or afford. Will pray for your cure with the right treatment to minimize the quality of life issues.

Ginny,

Welcome to the neighborhood. I have read your posts and some of the replies to your post and I have to tell you that you need to go to a major comprehensive cancer center for a second opinion. You have already gone through some things that I believe were not consistent with a comprehensive treatment plan to give you the best possible opportunity to beat this horrible disease the first time. Don't get me wrong, I do not want to incite fear and panic in you but you need to know what you are dealing with. Many of us may only have one chance at this. If you assume this to be the case, wouldn't you want to find the best possible team to collectively use the highest level of knowledge available to rid you of this life-threatening disease? Learn what you can to understand your options; ask what options are available and why they are recommending an option to you. They will either assume you don't ask because you know or they will not know some of the answers to your questions and are making the decision because they think that is their job. It is YOUR job to learn what you can and to make an informed decision.

Ed

I did go to the oncologist I found that is a friend of my brother-in-law. He is launching a
full battle plan. I am to go next thursday for a
complete body pet scan, then back to him and also
to a radiologist all before the surgery. He confirmed that the tumor is growing back, but would not reschedule the tongue surgery until we have the results of the pet scan, so I still have a lot of unanswered questions as to what is to come. He was VERY interested to find out that I have always had a higher number of mouth ulcers for unexplained reasons. Is this common among non-tobacco users with oral cancers? I'd like to sell my business & retire, but cannot find a buyer so I am trying to find a replacement for the next 4 months, does that sound about right as a recoup time? Thanks