My husband has been chewing beetlenut for almost 20 years now. For those who dont know its a type of south asian chewing tobbacco. About 4 or 5 Months ago he developed a sore inside his mouth that did not go away. I kept pestering him to go get it checked but he didnt. Then about 3 weeks ago a lump developed in his cheek. We went to an oral surgeon and a biopsy was done and we were told yesterday it is cancer in the squamous cell. No staging done and just told lots of appointments to come. I am worried and stressed. Any advise would be useful. thanks

Welcome to OCF! Very sorry that you need our help.

The beetle nut is a known carcinogen that causes oral cancer, so first word of advice would be for him to stop using it now.

Depending on the staging his treatment will consist of surgery, radiation and chemo. Chemo is generally given with radiation for oral cancer, not as a stand alone treatment. He should be send by an Ear, Nose and Throat (ENT) doctor familiar with oral cancer. If possible, he should be treated by a team of doctors at a major cancer center.

The OCF website (the main pages) has lots of information on oral cancer - take the time to read these pages and make a list of questions for his doctors. The OCF forum is another valuable resource to use. The forum members are generally OC patients and their caregivers who have already walked the path you are about to. Both the OCF website and forum have a search function which you can use to do research.

We are here to help you and your husband get through this. Feel free to ask questions. Wishing you the best.

Thank you Susan.

He has stopped the beetlenut now... a little too late but atleast its done.

Waiting for CT Scan and ENT to set up appointments. Just the waiting is where the problem is. Dont know stages or anything.
We have a 4 year old daughter and I want to prepare her for what is to come but I dont know myself.

thanks for the support

My heart goes out to you, my husband had a growth that pushed his back tooth out before we saw a dentist. Then we were prescribed antibiotics so two months pased before we landed in an Ear Nose and Throat clinic.

We waited a month and a week after his CT scan for his surgery.( In Canada the time varies between provinces but the priority is the skill and experience of your surgeon). My husband's surgeon(+team) I am convinced saved his life in combination with the radiologist and her team. If ever you need to relay information to your team of specialists but you find you can't get through. Simply tell the administration that you need to speak to a member of your medical team. I only used this when I felt it was an emergency. Also we had a case worker assigned to us who guided us and answered all of our questions or worries along the way.

I know that at the start while you are waiting, you feel alone and confused and in a way if you have no relitives who work in the medical field you are left with too many questions and life starts to spin.
-My advice is to stay focused on what you can do now. Family and friends will need to help with the small stuff like cooking, cleaning, paying bills, taking care of hour daughter. You will need the help, if you are not ready to take it now make a list of names, tasks and numbers.
-I know it is scary but have faith in the medical team. They will tell you straight out what they can do and test your husband's health so that there are no unpredictables. I wish I could have had the hope I have now five months ago. I was terrifyed and unconsolable and exhausted myself.
-Your husband will need someone to stay with him overnight. Make plans to be there with him, especially in the first week of his recovery. He will be weak and need your help for everything I personally didn't have time to wash myself or scatch my nose for a while. You will need to keep the room well humidified so that he can clear his lungs from the thick mucus. I know it sounds horrible but you can do this, and you will be forever closer after fighting this battle together.
- Do not focus on statistics, they do not take into account who has quit smoking or the quality of your doctors. And besides I learnt the hard way, 'my husband has beat this cancer and put it in its place and I have no right in being a sceptic'! I owe it to us to celebrate our life, our victory, no regrets only looking forward. I must admit, I burnt myself out but I am slowly gaining some ground and am ever grateful to have been there through it all.

If you have any questions at all, and no question is unimportant, let me know.

Sophie

Welcome to OCF! You have come to the right place for info and support.

What you can do now to prepare is to begin building a list of people to help you. Anyone who offers to help, tell them when the time comes you will let them know what they can do. Write down their name and contact info and a couple suggestions of what they can help with. Most people want to help but dont know what to do so you will need to give them tasks. It could be something as small as taking your child to the playground or library for story-time or doing a load of laundry, making a meal for your family, picking up some groceries, even walking the dog (if you have one) is helpful.

Take a biz card from every doctor you see and staple them to the inside of a folder. This will help you to easily find the right phone number if you ever are in an emergency situation down the road. Plus everyone is in the same place so much easier for others to call the doc too. Being organized will be a huge help getting your family thru this.

Your husband should see a dentist and get a complete check up. Any questionable teeth need to be taken care of now before any treatment begins. He probably will need flouride trays made so get started with making the appointment right away.

Your husband will need a full blood test including thyroid and testosterone levels. This must be done prior to any treatment starting to get pre-treatment levels.

Call the American Cancer Society and ask for help. They can give you up to $300 to help with transportation costs, prescriptions, etc. They also have a volunteer driver program that may be helpful. All this takes time to set up so do it right away. If you can get a driver to take your husband to one of his upcoming appointments it will help take the weight off your shoulders. This is especially helpful when getting radiation treatments. Having someone drive him even once a week is a huge help! This would give you a small break which is very important. Make sure you are good to yourself thru all of this. Taking time just for you is important so dont get so wrapped up in doing so much for everyone else and forget yourself. Being a caregiver is a tough job, full of stress and you will need a break once in a while.

Best wishes.

Thank you both Christine and Sophia.

I am so lost. We are in Canada and the healthcare system here is free but slow. We are waiting for the appointments but to me it is still taking too long. I think I will start be persistant so that I can get somewhere.

I have been told that everything will happen at our Cancer center. They have a dentist there and a whole team. The lump in my hubby's face is about 2 1/2cm so I am worried.

Can you guys give any advise on Dieter things. What he should be eating right now ... I have heard that he will need to increase his calories b/c of the radiation. Are there things he should eat now ... before any surgeries.

thanks again for all your support

Welcome to OCF! So sorry why you are here but glad you are here as there is tremendous experience to help you out. There are many who obtain medical services from Canada. No matter where we get service it always seems slow and the lags and delays often cause the most anxiety. A couple months from the first visit to getting actual treatment in action is not uncommon.

You did save time as you got an initial diagnosis right away. Many go around a few times doing the antibiotic loop.

Getting to an ENT surgeon is your next step along with that scan. The main players may include surgeon, MO (Medical Oncologist) and RO (Radiation Oncologist).

Keep asking and pushing for tumor board review as well. This is a group/team approach so your specific case is reviewed by all medical professionals involved with diagnosing and treating cancer.

Visit here often, ask lots of question. We are here to help. Don

Welcome to the family even though it's one you would just as soon not have to be a member of. We all felt the same way at the beginning, but there's no better place on the planet to help get you past the huge shock and fear of initial diagnosis and then later, along the journey to keep you up on the highway and out of the ditch.

Your husband will have plenty of fears and worries too. Many he will discuss with you, some maybe he won't. For that reason it will benefit him if he too joins the forum. Being able to communicate directly with other patients and survivors will give him more and deeper understanding of what he is going through.

I'm sure you are an excellent caregiver, but if everything has to go through you first before it gets to him, details sometime get lost in the translation. I hope he isn't one of those people who hates computers. If he is, then this journey will be a little harder on him and also on you.

Just as you have been told to stay busy with preparing for all the upcoming procedures and treatments, your husband needs to stay busy too. The worst thing he can do is to just sit there idle and think too much about his situation. Those thoughts too easily turn to the dark side and that is not good. Much better would be for him to be actively reading the web pages himself about his cancer and it's treatment and learning what is going on, so he too can help advocate for himself. If all this load falls only on your shoulders, it's going to be a longer and more difficult journey. From my minimal experience reading the stories of patients versus the stories of caregivers, it's the caregivers who have a much harder time if their husband/spouse/significant other wasn't also actively involved in the journey.

If I am mis-reading your situation and your husband is actively involved, then my apologies. Either way, welcome to the family, we will help get you through this.

Tony

Prior to the start of treatment intake should be increased. If the patient is able to eat, then they should enjoy all their favorite foods even desserts. Bulking up before starting radiation or having surgery is a very good idea especially if the patient is on the average or slim side without having a alot of extra pounds.

During rads a patient should be taking in a minimum of 2500 or even 3000 calories every day. Water intake minimums are 48oz, but some will say much higher is necessary like 80 oz daily. This is one of the most important things that can be done. Its controllable in a whirlwind of things that are out of control. Its not easy to take this much in but it will help the patient get thru everything so much easier. As far as going into surgery, I would still advise it shouldnt hurt to add a couple pounds. This is especially true if the patient is having surgery on their mouth or throat making it difficult to eat regular foods. They should go into this without having any food or beverage cravings. Enjoy everything now as this will likely change.

Best wishes!

Hey hon... I'm in Toronto - where are you? I am not going to give you advice on what he should eat etc,.. I think most of the others have covered this. Where is your husband due to be treated? Are you in Toronto as well? The process with referrals goes like this. (Cancer dx) often you are referred to the hospital (CCC ) and they have a new patient intake program where they set you up with certain dr. Etc... Well this is what takes the time. A direct referral to a specific dr. Is generally a lot faster. (Ps - drs generally refer within their peer group... People at their hospitals or who they know through their hospital's affiliations. And these days most hospitals are connected to a CCC or offer the service in house (in house is the WORST - why?? Most drs there wear many hats and to be honest while they do cancer - CCCs do cancer all day every day) ) anyway when it comes to this cancer you want to be in the best place possible. Most major cities have a top CCC that serves the province - in Ontario you want to be at PMH - we have a CCC in Hamilton, and another in MIssissauga (credit valley). Hamilton (can't remember the name) is affiliated with McMaster - they're a good facility - credit valley I wouldn't send my dog to. But the treatment at PMH is world class. There is also another terrific facility in Vancouver and Calgary. Firstly these facilities don't particularly want to be a second opinion type of place - they want to be your first opinion (frankly with so many cancers out there they don't have the time to be giving second opinions all the time) so if you have a fresh dx - find out what type of dr. You need to see - in your case an ENT - then do some of your own research - find out who the top cancer ENT in your province is. Then have your specialist, or family dr. refer you directly to him. It even helps to call ahead and leave a message to be expecting that referral. Once you have the appointment - push - kindly - phone and say you're so upset and so worried. If there are any cancellations would they please consider putting you in tell them you can be there within ________ insert reasonable time frame that applies to you. Now before seeing these people they'll want your MRI and CT results. If your hubby hasn't had them find out where those referrals were made and call them explain the same thing - you're really worried and if there are any last minute cancellations you can be there in a flashy lot of times the response you get depends on the secretary - or booking office person. But always ask to be put on a waiting list. Be proactive.
I once said to my ENT - doc if anyone cancels there surgery call me I can be here... He said - Cheryl no on cancels my surgery - I told him I know but things do happen - people get sick etc... And he said - you're right. This didn't help me in particular but I told my husbands cousin's parents the same thing (he was their dr. too) and sure enough he had a cancellation and she was put in within a week.

So it doesn't work all the time but it does keep you in the forefront of their mind. And it may just help. And call daily if you have to - just be nice about it.

Hugs and welcome and sorry you have to be here.