Hi all,

I am the new memeber for this site and I am so glad to find it very useful.

Currently my husband had been diagnosed with the Oral Cancer Stage 2 weeks ago. Instead of the surgery, we chose to do RT and Chemo combined as the treatment. My husband is 40-year-old very healthy man, no smoking no drinking, so it is such a depressed and shocking news for us. I am seeking someone with the simular situation who can give us some advise about the experience that he or she has so we can get through this. Thank you very much.

Hi,I was diagnosed with the same cancer seven years ago but unluckily in its final stages. The doctors wanted to remove my voice box which I refused out right and asked for radiation followed by chemo. It was a gamble as I kept the surgery bit as a stand by.
I used to smoke a lot and never drank (because of my job,I guess). The smoking would increase time and again as I was working almost 17/18 hours a day without a break.
Surprisingly, when I got the cancer, my oncologist also made "voice abuse" a path towards the development of the cancer.
The last seven years have been good in the sense I am still alive but the cancer took away my ability to eat or drink anything orally and now feed ( for the last seven years) though a "peg tube". I have no voive though my larynx are intact. For this I creted a device which I call "The Orator" which is attached onto the trahcheotomy tube and gives me as clear a speech as anyone else - but more on the husky side.
I was 42 when I got hit with the cancer and though I thought I had beaten it (seven years living) it has just resurfaced and I have dedcied not to take any further medication as my life was a turmoil when they diagnosed the cancer and medicated me along with a lot of sugeries. I know for a fact that I will never be able to eat normally again but can say one thing - my wife has been coming with such various "meals" all pureed that the doctors are quite amazed at my weight and fitness levels.
You could read my story on the main page - ANANTH'S STORY.
Your husband seems to be a lucky guy that he was diagnosed in its early stages and its curable without too much hesitation.Depression is a part of what cancer gives you and the only way to get out of the mode is by remembering that we cannot do anything as time does not wait. I have learnt to live life to its ultimate and have no regrets on what is bound to happen or happened.
If you feel I could be of any help do write back. My name as you would have guessed is Ananth Shenoy.
Take care and tell your husband there is no cause to worry. As far his depression is concerned - I would advise him to get onto the site and chat up with various people who really care for each other., and of course to accept what has happend and carry on as the clock cannot be reversed.
I will end this here and look forward to hearing from you. I am sorry but I did not get your or your husbands name.
With lots of warm regards,
Ananth.

Hi Ananth,

Thank you so much for replying on my message. I felt a little better after reading your notes and I am so glad to hear that you have so successfully come along for so many years (and of course more good years to come ). Just keep us your good spirit and I am sure God will see it.

Do you mind if I ask you this question: Did you have the Oral Cancer like my husband, or it was on the base of the tongue? My husband has it on the right side along with 2 small lymph nodes (not sure if they are cancer till surgery), which the Doctor said there is still a distance to the base of the tongue. I don't exactly understand this but when we were recommended the surgery, we asked for the other option (which is chemo plus Radiation), the Surgeon said the "Standard Procedure" is the surgery, which it will be 2/3 of the tongue remove....sounds very invasive, and the RT and Chemo option is more to the base tongue cancer.

From your case, it looks we had made the right decision because he is young and we want to leave the surgery as the contingence plan, and hope the treatment works.

If you don't mind I would like to keep contact with you. I very appreciated your time and hope we can chat more.

Jian

Hi Help
I was first diagnosed with a tumor to the right side of my neck in May this year after the removal of a lump in the right side of my neck. This initial lump was a secondary and then I had my right tonsil removed but that proved to be benign. Two weeks later I had a radical neck dissection and they found secondaries in two more lymph nodes ~ no sign of a primary.
I started radiation and chemo at the end of July and finished it two weeks ago. I feel really crook now from the effects of the treatment however I wouldn't change any of it. All I want is for this 'thing' to be gone ~ for good.
You will get heaps of great advice and support on this site from all sorts of lovely people who have each had similar but different experience. In the long run you have to go with what is right for you and yours but at least by coming on here, you'll get to hear it from people who have 'been there, done that'.
Good luck with everything. You will have such a roller coaster ride of emotions and life will not be the same for a long time, but know that there are a lot of great, loving, supportive people on this site who will tell it to you like it is.
Cheers from uptown Down Under
Trev

Hi Jian

Welcome to the exclusive club, unlike any other, unfortunately admission is by cancer only. My husband was diagnosed with SCC, Stage IV in his tongue, throat and lymph glands last March. The learned ones said that surgery was not an option, if they had operated, he would have had no quality of life because they would have had to remove all his tongue and his voice box. A bit different from Ananath, his age was against him at 67.

His chemotherapy, 3 x 5 days, three weeks apart, were not exactly a breeze, but surprisingly tolerable, not a faction of what I expected and so much better than lots of others in this site. Within two days of the first Chemo, the swelling in his neck (lymph nodes) had visibly disappeared. Then 20 sessions of radiotherapy, absolutely fine till half way through then couldn’t swallow, then had to have a nasal gastropic tube fitted. Most people have a ‘PEG’ which as you have probably learned through these pages is a tube to pass food and medications through to the stomach, basically because the patient’s mouth and throast are too sore because of the radio therapy to swallow. This is usually done before the chemo starts, because immunity system becomes low, there is more chance of the wound healing before the r/t starts. My husband (Bill) says the worst thing is, because you cant swallow, the normal secretions everyone has and swallows unconsciously and he had to spit out all the time, which I am afraid, we get used to. He is gets very tired, but not as much I think as Trev, everyone is different. He also gets unpleasant tastes and textures in his mouth. Eight weeks after completing r/t he is can swallow teaspoons of water but still cannot, or refuses to, eat which is our big problem at present because I am becoming a bully trying to make him eat something.

We went for our 6 week check two weeks ago and the consultant was very pleased with Bills progress, he has predicted that he will be able to sit with the family for Christmas lunch. He says he thinks Bill is now clear but we will have to wait until all the swelling as gone down to make sure. So consider that going from a Stage IV inoperable tumour, 7 months later things arte looking very hopeful.

As Trev says, everyone is different, each cancer, its treatment and how it is responded to seems to be different.

I have found solace in these pages and truly do not think I could have coped without being able to come here, scream and shout, ask for advice, I have made friends with people I could pass in the street and not know who they are.

All the best

Angie

I was also diagnosed with stage 2 mouth cancer, and had RT and chemo (no surgery). The treatment is rough, with various side effects, especially from the radiation. Hopefully the oncologist will go over what to expect in his case. Of course, people here can provide much information.

I completed treatment 8 months ago, and so far so good. I still have dry mouth, lower energy, taste is off. But everything has improved over time. And I'm hoping to keep improving. There is light at the end of the tunnel.

Dear Jian,
My cancer was totally oral and nothing to do with my tongue. The cancer was on my esophegus going down. Its a normal practsie I have noticed that almost all oncologists will suggest surgey as its the easiest way out for them and a lot of people do accept their verdict as the gospel truth and then when they realise the other possiblities its too late. We are lucky we have the internet where one can an answer to almost any doubt. My wife and I would spend hours browsing the net, till we hit upon the no surgery bit..... and it worked for me.
As my onclogist mentioned I had age on my side as I was 42 when I contracted the cancer and your hubby is also very young. Second stage cancers are still considered to be the kind that can be treated without too many side effects. As Trev and Angie - say each one has a different problem - but one has to be sure on what you want. At times you may get swayed by what I say or at times with what Trev says - but its the two of you who have the final say.

One thing though, the "standard procedure" is the easy way out. Its better to take a chance and keep the surgery away and keep talking about the radiation and chemo ( which I am sure will be very mild in dosage). I am not a doctor but am just relating from what I decided to do.

Yes - the radiation is going to play havoc for sometime and there is no point my saying its not going to take its toll on your hubby. Eating solids will become a problem but with time - he should be back to normal.

Do write whenever you want to ask anything - I check my mail everyday and times more then twice a day, so I promise I will reply without delays. I am also sure the others who have been through the radiation and chemo will also be of great help as everyone has his/her way of they coped up with the radiation and each one of them put together could be a great deal.

Take care, say hi to hubby ( I know your name now but not hubbys ). Tell him not to worry as there is no point doing so. Its not going to make things better. Just carry on with life as its a beautiful life.

Love,
Ananth

Hi Ron,
Its great to see how things are moving with you. You are right about the oncologist giving you ways of countering the pain in the throat while eating or drinking.
In your case I see a very happy Ron ( touch wood) and hope in due course you will not even remember this phase in your life.
Live life well as most people only get one ( I got five!! and am on my 6th.!!),
Take care,
Ananth

Thank you so much for all of your responses. I felt much better and know a little bit more about it. In fact, I made a mistake on his stage. Unfortunately he is stage 3. But I think I wish with Ron's experience, he can cope and deal with it with all the supports that I can find here.

Angie thanks for sharing your experience and we all know how difficult that is to a patient's wife to handle and try to do our best to help. I am very pleased with Bill's recovery and I am sure he will be able to sit with the family for Christmas lunch from this point on.

Keep it up Trev. Things are looking promising on you and just know that you will get better after you've gone through this. I always tell my husband that yourself is always the best medication as long as you believe that you can do this and win this war. and I am sure you will.

By the way, can anyone tell me what kind of cream and gel works best on your skin for the RT? I am about to get ready to buy them...Thanks.

Hi Ananth,

I am so glad to see your notes. Yes I think that we made the right decision too, and you are right that the Dr. will just give a easy way out "for them". Sometimes you are just so confused with different answers that they gave you, and like you said, we just have to come to a decision that we think it will be best.

With the Stage 3 (I said Stage 2 by mistake), I hope that what you said is still true.

Oh Ananth,

I kept forgotten to tell you that my hubby's name is LT.

Hi Help
Good luck with treatment we here if needed

Take care
Dave and Sue
xxxx

Thanks Dave and Sue. You guys too.

Hi Help, I had it in my sinus in 1997 so it's a bit different but I went for surgery and RT. Good luck and welcome to the site.

Dear Jian,
I am confident that LT will do a great job in taking the radiation in his stride. I am pretty sure they will use a bit of chemo. My wife used to use a gel called tetraban. It was suggested by both my oncologist and my ENT who now more my friends then my doctors. It has worked as my beard has come back and I wish it had not!!!

LT you are okay and with such a lovely wife by your side - do you think anything can upset you??
Take care and lol,
Ananth