I don't know if you all remember me. I lost my mother 11-4-06 to oral cancer on her tongue, 71yrs old. Non smoker-drinker. You can look up my past posts. She had surgery with clean margins and radiation, IMRT. Was doing well.
Started having symptoms the dr. said was from radiation side effects. Then my dad had a heart
attack. Went to my mom's one day called the squad cause she was having trouble breathing,
emergency trach put in, 2 days later found out cancer spread and was obstructing her airway and 10 days later she died.
My brother 41yrs has just been diagnosed with oral cancer as well. Just got results today. Went to ENT did biopsies of side of tongue and flour of mouth, swollen lymph nodes as well. Had CT scan. I have not seen the reports yet. The ENT dr. says that it is not related to my mothers cancer. That this type of cancer is not hereditary. IS THIS TRUE OR NOT.
It has been 7 months since my mom died and we are all still grieving.
The ENT dr. said to him that he just got the bad luck of the draw.
My whole entire family is in a state of shock.
How could this happen again. He does not smoke, occassional drinker and chewed years ago, not sure how long.
To top it all off, my dad just found out he has an abdominal aneurysm, needs surgery within the next 4 weeks.
We are going to see another dr. in cleveland ohio tomorrow at the comprehensive cancer center in cleveland. The ENT that did the biopsies and ct scan mentioned he was stage 2 and this was treatable.
How does the staging work, how do they know for sure if the swollen lymph nodes are indeed cancer.I think he has 3 of them.
I am scared to death at this point. I am trying to stay positive for my brother, I will be taking him to the dr. tommorrow.
The ent dr. that did biopsies, mentioned surgery and radiation.
I'm not sure how soon they will do surgery.
He just went today to the local ENT and they got my brother set up the next day to go see the
Cancer otolarngologist. Thats his title.
What about chemo, if it spread into the lymph nodes, won't he need chemo?????

Anybody with information on the carnation drinks,
the 560calorie ones, where and how can I get some ordered.
The dr. we are seeing is at the university hospital, Ireland cancer center. I hope this is one of the comprehensive cancer centers.

Thanks for listening and any information would be greatly appreciated.
My biggest question I want answered is, is this cancer hereditary or not.
At this point my brother is a total wreck, they have him vicodin script and resterol for sleep.
He's not having much pain, just when he eats sometimes and his throat is a little sore.
The Ent dr. here put the light scope down to look in his throat area and said everything looked good in his throat. I don't understand why he is having a sore throat. Could it be nerves.

Michelle

Michelle


I am SOOOOOOO SOORY to hear all that you have been through and all that you are going through ! I asked my DR as well as the DR"S @ Dana Farber In Boston if it was hereditary and i was told No as well! I wondered because I have 5 kids and I needed to know if they are at a greater risk for this. Your Bro must be scared to death specailly with everything you all have just been through ! I know I am and was ..I watched my uncle ( by marriage so no blood ) suffer to this disease and finally he lost his battle as well. SOO SOO Scary ... Just know that we are all here to talk to and maybe your Bro would even like to check it out to get info from those who have been through the same thing. I didnt smoke either and My drs said ."bad luck ..wrong place at wrong time Kinda thing"..Who knows why , but the more you know the better off you are . As far as I know with the Nodes.....I think they have to be biopsied to know for sure if it is cancer. I hope you will find some answers you are looking for and again I am sooo sorry to you an your family for all you have been through and will be going through !


Shar

Hi Michelle;

Very sorry to learn of your brother's condition, and all the other health related issues your family has had to deal with.

I cannot help you with the hereditary question, but I am certain you will get the information you are looking for through this forum.

I used the Carnation products when I first had trouble swallowing solid foods, about two-thirds way through my radiation treatments. You are referring to "Instant Breakfast", correct ? If yes, they are generally available in larger food stores or warehouse-style distributors. They mix well with milk, and you can easily enhance a blender full with different fruits (bananas being one of the best for both nutrition as well as texture), ice cream - you name it.

Your staging reference doesn't sound quite right. My lay-person understanding of staging has mostly to do with the size of a tumour, how many there might be, and where the tumour(s) are located.

Stage 1 is the smallest tumour with Stage 2 being larger, up to a certain circumference (sorry, I cannot recall this measurement). Stage 3 and Stage 4 cancers are referred to as locally advanced. These cancers are larger, and/or they may have spread to regional lymph nodes. Stage 3 are greater than 4 centimeters in diameter (a little over 1 1/2 inches), or any size that has spread to a single lymph node on the same side of the neck as the primary cancer, with that lymph node measuring less than 3 centimeters in diameter. Stage 4 cancers are cancers that have spread to other adjacent tissues, which may or may not include the lymph nodes. Stage 4 also refers to cancers that have spread to: 1) more than one lymph node on the same side of the neck as the primary site; or 2) when it has spread to more than one lympth node(s) on one or both sides of the neck; or 3) when any lymph node is greater than 6 centimeters (+ 2 inches) in diameter.

My focus was on Stage 4 because that was the stage my cancer had progressed to at the time of my initial diagnosis. I could have been a Stage 2 or a Stage 1 if I had been smart enough to go to the doctor when the symptoms first arrived.

As twisted as it might sound, I recall wishing I was a Stage 1 or 2 way back then ! Its hardly something to wish for, but it wasn't as scary as being Stage 4, let me tell you !

If your brother's Stage 2 is confirmed, he should have a realistic expectation of beating the disease. Based on what I have read and been exposed to, the results of radiation plus chemotherapy (or another combination of therapies) are better than radiation alone.

But remember, every cancer patient is unique and comparisons with other people and their treatments can easily mislead you. Personally, I didn't derive much comfort from the numbers and chose to keep my mind and energy focused on what I wanted to happen to me, not what had happened to others. Mind you, my situation was much more serious than your brother's, and very little I came across was encouraging. In any case, I believe one's mental strength is one of the best allies a cancer patient can have, and every ounce of energy will be needed to fight the battle. So, don't waste resources by worrying !

You have found an excellent support group here, and you will be encouraged to return often to both obtain information as well as post your brother's progress.

I wish you and your family every success in your collective fight for a return to good health and happiness for all.

Sincerely,
JT2

Michelle,

I have been told that a family history of cancer certainly is a factor in determining one's potential for cancer. Like everything else, it's not the sole determinate.

It doesn't appear that he could rule out HPV as the cause so I would ask to be tested. Johns Hopkins says HPV + SCC can lend itself to a slighty different Tx so I would want to know and I would want HPV knowledgeable cancer docs on my team if he does test positve and I would want that known before Tx plans, including surgery, were started.

I sent you a Private E mail re the VHC.

Sorry that you have been hit with all this crap but this site will be there whenever you or your brother needs us.

Michelle --

Information about staging is available here -- http://www.oralcancerfoundation.org/facts/stages_cancer.htm -- and the main OCF site has a lot of information that should be helpful to both you and your brother as he prepares for treatment.

All the best to you both,
Leslie

mcgee

Oral cancer is not hereditary, thats what I was told by a head and neck cancer doctor at Ireland Cancer center, Cleveland.

Is your brother going to Ireland Cencer Center, Cleveland. I went there to have excitional biopsy of lump(floor of the mouth). Thank God it was benign.

The doctor I met was Dr Rod Rezaee, he is good.
I live near by Cleveland. Please feel free to ask me any help or questions.

If I were him, I would insist on getting tested for HPV virus.
Carnation VHC can be ordered through Amazon, of all places. I order my husbands Ross 2cal from them. They will deliver that to Alaska but not the Carnation---go figure!?!? I think it comes directly from the company and they don't do Alaska. I guess we're a foreign country to them.

Hi Michelle,

I remember you well. I followed your story. Your Mom was diagnosed with her recurrence a few months after my Aunt was diagnosed with hers. (My Aunt passed away three weeks ago).

While we understand from the doctors that this particular cancer is not hereditary, some families do have a strong genetic predisposition to developing cancer in general. In my husband's family, many many people develope cancer. My husband's mother is our Aunt Rosemary's sister and my husband's mother has cancer too. Three different kinds in fact. One of them is SCC found in the lymph nodes in her neck, but she has not developed oral cancer yet. I don't believe they understand 1/10 about this disease that they will someday.

Please try not to be scared. Just keep in touch with the knowledgable folks on this Board and ask as many questions as you need to. They will get you through this and will help you to understand better. Then, when you feel you have all the facts you need, encourage your brother to go full force to hit this vicious beast as hard as they can.

I'll be praying for you.

Hugs,
Lisa

Thank you all for your replys.
Lisa, I am so sorry to hear about your aunt. I can surely feel your pain. I am so sorry.
I finally just ordered the carnation drink off amazon. I couldn't get it at any local pharmacies.
We went to see the dr. on wed. This is the plan.
Monday he is going to put my brother to sleep to explore him more and put a feeding tube in.
He said he wants to make sure nothing else is lurking around is the way he put it. He doesn't think so, but just wants to explore more and per haps take more biospies. He doesn't want to do surgery because it would require removing a large part of his tongue.
The plan is radiation and chemo. The dr. felt pretty confident that this would take care of it.
The cancer is on the left side of his tongue and 3 lymph nodes are enlarged.
He goes to see the radiation dr. and oncologist on thurs/fri to find out what they are going to do.
What actually shrinks the cancer the radiaiton or chemo???? I'm not familiar with all this.
Any information would be greatly appreciated.

All I can do is take one day at a time. This is not easy. I am trying to stay positive, but is very hard.
All I know is what this disease has done to my mother and this is what makes it so hard to stay focused on the positive.
Reading all the positive stories on this site gives me hope.
I did tell the dr. about my mothers case, so he is very aware of what happened. He said he has been doing this for 20years, and he see's 80% of his cases are head and neck cancer. So I put my trust in him.
I am already amazed that we got him to see this dr. the next day and the following week doing the peg and seeing the rad/oncology dr. so quickly and not having to wait weeks.
If he sees the oncologist on thursday, does anyone know how soon they would start chemo????

And see's the radation dr. on Friday, How soon will he start his radiation?????
I know he has to be fitted for a mask etc. not sure how soon they would start radiation.

And does anyone know is the chemo once a week or everyday or what????
Having a plan will help ease our anxiety.

Michelle

Michelle

I think in head and neck cancers Surgery and Radiation are more effective than Chemotheraphy.

In advanced cases they give Chemotheraphy along with radiation and Surgery.

And also try to get second opinion from good hospitals like Sloan or MD Anderson.

Michelle, from a planning standpoint, you should be ready for things to move pretty quickly from now on. The rad Doc and the Chemo Doc will work out the schedule for both of those things. Radiation will most likely be at least once a day, 5 days a week, and the chemo schedule will depend on what they are giving him. I'm glad to hear your brother has you for support. Amy in the Ozarks

Update on my brother so far.

Yesterday the ENT put him to sleep to explore more. My sister took him and this is what I found out. He placed the peg tube and said he only see's the cancer on his tongue and in one lymph node. The cat scan said 3 lymph nodes enlarged. So I don't understand what he means by one lymph node. How he can tell by looking. He also took more biopsys. He's saying stage 4 based on size. We go this thurs to oncologist and friday to radiation dr. We will then find out the plan then. I know he has to get fitted for the mask and does anyone know how soon after that do they start treatment???
The dr. did say that it looks like he has had this for sometime and it started on tongue and bored out, is how he put it.
The path report stated invasive moderately differentiated squamous cell carcinoma.
The dr. did say he had greater that 50% chance of beating this.
Since he had peg yesterday his stomach is sore and he didn't feel like eating much today.
He is on percocet for now.
He will see the ENT who put the peg in on thursday. So we haven't gotten anything set up yet to start tube feeds yet. I don't know which dr. orders that???
He is drinking boost and the carnation 560cal cans and liquids. He's having trouble swallowing
most foods.
Thanks David for the info on the carnation drinks. This is going to be a big help for him.

I am so ready to help him start the fight and get him through this. Very overwhelming at times.
He is very scared and very down and quiet.

Any help would be greatly appreciated.
I continued to pray for all of you every day.

Michelle

HI, Michelle, Glad to hear your brother got the peg as that will probably make it easier for him [and caregivers] to get the calories and liquids he needs. When you get a report [the lymph node stuff] that you don't understand- ASK for clarification and write it down so that you understand what is being said. When his radiation starts, there will no doubt be some questions we can help with? Is chemo still part of the plan? The fact that he [and your family]is scared is very normal. We've all been there. It will take alot of courage and strenght going forward. Best wishes to your family. Amy in the Ozarks

Michelle,


i cant answer many of your questions, however i can tell you that I am prayin for you and your brother and all of your family and I am always here to listen !! (((HUGS)))


SHar

Went to oncologist today. recommendations for my brother are
Cisplatin and 5FU. Week one he would stay in hospital and get chemo and then come back week four and get it again. Along with radiation.

other option was a clinical trial with Bevacizumab and Docetaxel. Has anybody heard or done any of these treatments. From what my sister told me the oncologist said it's been in trial for 18 months, they have 20 people in already with good results. They gave booklet on this to read and it is loaded with information. and many side effects. I will have to do some research myself on these drugs.

tomorrow we go see radiation dr.

Michelle

Michelle-

How are you & your brother doing? I have been thinking of you & haven't heard anything. Hope you are all hanging in there. You're a good sister & a great support for your brother.

Hi, McGee - I have stage IV, cancer of floor of the mouth, but the tumor was in my lower left jawbone. I am a breast cancer survivor, having finished lumpectomy and radiation in 1994 just before my husband was diagnosed with CFM (cancer of floor of the mouth. NOTE regarding heritady: My husband died of cancer of floor of the mouth in 1994. Certainly, I am not related to him I never smoked, had a drink or two during holidays. My husband was heavy smoker and drinker. He was 59 when he died, I am 73 now and was diagnosed when I was 69. Many people think that second-hand smoke can cause oral cancer, but there does not seem to be any real studies about second-hand smoke. I had surgery in 2004, left lower jawbone was removed and a plate inserted. The surgeon grafted skin from my left leg, just above the knee and also from just below my left breast. The grafts were intended to cover the plate; but it "failed" and all the grafted skin pulled away, leaving the metal plate with no skin coverage. Prognosis at that time was about 2 years, and chronic infection at the plate site. It has been 3 years and 5 months; and during that time I've had 4 biopsies and one surgery to remove part of a tumor. Last month I had another biopsy - three sites were checked all in and around the plate. All came back as cancer and the prognosis is 2-6 months. I was offered radiation, but the plate would have to be removed and probably could not be replaced, as the bone it is attached to is too fragile. I would have refused radiation in any event as I personally feel the side effects are too gruesome to even think about. Doctors say chemo is only offered in conjunction with surgery and/or radiation. The tumor is growing almost daily, and there is a new problem - bleeding from the site of the original tumor. So, I am praying and hoping for something which would prolong my life without horrible side effects.
My nickname is Katie if anyone wants to respond.

Hi Katie, I am sorry to read about the situation you are in.....I will be praying and hoping, too, for something that can help you....Carol

Oh, Katie, I hope you can find something to help.
This just a horrible disease. Prayers being said for you and yours.....

Katie


My heart and thoughts are with you ! All you have been through and are going through . You sound like an amazingly strong women though to have over come so much , Please know that we are hear to listen and offer as much comfort as we can !

Shar

Dear Katie, Have you discussed trying Erbitux with your Docs? It is palliative treatment, but in some cases,including my husband,it slows down the growth of the tumors - and gave us time to get some final affairs in order- in our case, an additional 7 to 8 months. One hard choice for us was that if John had wished to enter into Hospice, he could not continue the Erbitux. We elected to have him stay at home and take Erbitux until it was no longer effective, at which point we concentrated on pain control and best comfort procedures for him. Do you have family to help in making these decisions? Amy in the OzaRKS

Thank you all for responding back.
Katie, I am so sorry to hear what you are going through. My prayers and thoughts are with you.
Have you gotten a second opinion??? I would surely consider that.
I know this is a horrible disease. I lost my 71 yr old mother in 11/06 and know my 41yr old brother is in the fight for his life with this horrible disease. Tongue cancer and in 1 lymph node.

Jordan, Hi I have been thinking about you lately.
How are things going for you???

I just wanted to give update on my brother's treatment process.

He goes this friday for the final run (or whatever you call it) for his radiation.

He is starting treatment this Monday 6/25th.
He is stage 4.
He will be having IMRT treatments for 7 wks.
Cistplatin 1st and 4th week along with 5fu.
He will be staying in the hospital all week because they have to run the 5fu for 96hrs.
They will be running it through his vein.

I'm kinda glad he will be there all week and get his radiation daily that week also. The cancer center is about 1hr 15min away. Long hike but he is at a CCC and I feel this is the best place for him.
Also my father who has an abdominal aneurysm will be having his 3hr operation that monday as well.
I am so ready for my brother to get started with treatment and get things going. He does have peg tube which we haven't used yet. Just flushing daily and giving some pills through it.
He is drinking liquids only, can't swallow anything else at this time. I noticed he is having a harder time talking. So we need to get this treatment started. He had his pet scan done last week. We haven't heard anything about it so I guess it was ok. I think they would have called if there was any problem.
Don't they use the pet scans to help with the planning of treatment???
When he goes this friday he will ask about the results.
He is drinking boost and the carnation 560calorie cans and liquids soups etc.

I just hope this chemo/radiation works in the next couple weeks and shrinks the tumor on his tongue so he can speak a little better.
And I hope it destroys this beast.

I will keep you updated.
You are all in my thoughts and prayers.
Michelle

Michelle,

Sounds like he will be in good hands and I'm sure things will start to improve but just don't look for fast miracles and tell him to stay tough and do everything he's told to do.

David,
Thanks for the encouraging words. I'm sure I will be asking many questions as we get started.
I am so scared for my brother, but at the same time am so ready to get this treatment started and kill this beast.
I get overwhelmed at times when I think about what my mother went through and how she lost her battle with this disease and it scares me so much.
But I decided that I have to stay strong for my brother and help him fight this. I know he is scared and still grieving over my mother.
As we all are.
I read success stories (such as yours)
and then I read not so good ones,
And I lived through a nightmare.
I'm just venting. Thanks for listening.

I am just focusing on one day at a time.

Michelle

i am doing cisplatin toxetere once every three weeks for three times along with 5 fu that is on a fanny pak for five days. my tumor was 4.5 cm and now i can barly find it.

I don't know much about oral cancer, though I had it myself. I just wanted you to know that I'm so sorry to hear your story and all that's going on with your family. I will do what I do best and pray for you and keep you close in my thoughts. Most of all be sure to take very good care of yourself. It's important that you eat properly and take some time out for you during this time.

All my best,
Donna