Hi:

Well, my wonderful Wife will be going to start her radiation treatments on August 24. She had Adenoid Cystic Carcinoma in her neck area which, according to our doctor, was completely removed successfully. However two weeks later he reported that they found some cancer cells. Thus the radiation treatments. She will face 30 treatments in all, five days a week. She is handling this quite well but I'm really having a problem. I have a problem in that I very rarely share my feelings with anyone. Can't sleep, having problems thinking of anything else. Wishing it were me instead of her. The Doctor's are very optimistic and that I am hoping it will be so. I just don't want her to have to go through this.

I have read the booklets, checked on the 'net and it seems it could be rough on her. I will, of course, support her 110% and we will face this together. It's just that I am, at times, overwhelmed by my feelings of helplessness. Anyway, just venting and hoping others who are or have been in a similar situation could let me know how they coped.


We have been married for over 40 years and have been so happy and very active. This was quite a shock for both of us.

Thank you for listening.

Welcome to OCF! Im sorry to read about your wifes current situation! You have found the very best place to help both you and your wife get thru the upcoming treatments and recovery with correct, up to date medical info. There may be family counseling services available for you at your wifes treatment facility. Many patients and caregivers need some help to get thru the shock of a cancer diagnosis. Ask what is available at her next appointment. Many patients and caregivers too will temporarily need anxiety meds to help deal with everything during this stressful time. At OCF, we completely understand its not just hard on the patient. Caregivers suffer right along with the patient. Its like a cancer diagnosis was given to both people. I dont know if I would be a very good caregiver having to watch someone I loved suffer thru treatments and recovery.

Hang in there!!! You are in the best place for the right help.

Thank you for all the encouragement. My Wife, Sue, is going to see the dentist at the hospital on Monday August 20th and we then get ready for first treatment. The Radiologist has told us that he doesn't expect Sue to lose weight so, I'm hoping, that's a really good thing. Although Sue says she could lose a couple of pounds.....

Once again, thanks.....

You're welcome Thats what were here for

The radiologist knows how difficult it can be going thru oral cancer (OC) treatments and how most patients will lose weight which is frowned upon no matter what they start out weighing. Most members here know intake is a favorite subject of mine and I have a tendency to nag people about it. I had thought the same way where losing a couple pounds would be a positive thing but boy was I wrong!!! Losing weight can happen very quickly. Its evident when a patient is not keeping up enough with their daily minimums of at least 2500 calories and 48-64 oz of water. If the patient can push and do more it can only help make it easier on them. When I started rads and began losing weight, it just fell off me. Before I knew it I was losing 4, 6, 8 pounds every time I got weighed and the nurses started having daily chats with me. Even with my OCF friends nagging me to push my intake I just couldnt do it. Along with losing weight, patients are also quickly losing muscle which is why the rapid loss and high amount of pounds coming off in a short time. If your wife can get thru rads and the first month of recovery without weight loss then she has done excellent. Even losing 2 or 3 pounds is a sign that she needs to pay more attention to her intake every single day. I cant stress enough how important it is to make those daily minimums... every single day!!! Ive seen it happen to far too many patients who arent doing so well with their daily intake and just like me, they end up hospitalized for malnutrition and dehydration. So now you know why I nag. I hate seeing anyone start going down the same path as I did as I know the end result will be the patient feeling horrible, possibly the worst they have ever felt in their lives. Of course, this is not going to be what every single person experiences. Every patient is different, some lucky patients sail right thru with barely a sniffle while others stumble thru having issues with major side effects making them struggle almost right from the beginning of rads. Im sure you will hear "everybody's different" over and over throughout the next 4-6 months.

Is Sue seeing the dentist to have flouride trays made? Anyone going thru rads should be using the flouride trays every single day to help save their teeth from the effects of radiation. Make sure she also has a full blood panel done including thyroid (men will also need testosterone levels too). Its easy to have this done prior to treatments starting and those baseline numbers will be very important down the road. The baseline levels after rads/chemo have a very good chance of not being the same as before treatments. After rads, most patients will have thyroid issues. This can show up a couple months after finishing rads or it can take years before the patient notices anything out of the ordinary or connects how they feel to their thyroid. Doctors can easily monitor her thyroid levels but need to know what her regular level is before shes had things to impact it (rads/chemo). To have normal thyroid numbers patients take a pill every day which to me is not a big deal after the other things most of us have been thru.

Right now before any treatments begin, you r wife should be eating like crazy all her favorites, desserts too. Sue does NOT want to even peek at calories now, just make sure she has all her favorite foods. Almost all patients going thru treatments for OC will have their sense of taste temporarily change and swallowing could become a challenge making eating more of a chore than a pleasant experience. The last thing any patient needs is to go thru rads and get cravings in the middle of it. Many OC patients will start to notice eating changes after a week or 2 of rads when they notice things dont taste as good as what they imagine. This is why I stress to eat all the favorite foods and drinks now.

You are in the rush, rush, rush phase right now with a million appointments where you both are running all over. Once rads begin, its almost a relief when you settle into a routine. Being a caregiver is NOT easy! Ive always thought Id make the worst caregiver ever!!! I cant imagine how difficult it is to watch someone you love go thru first the shock of a cancer diagnosis, harsh treatments and the recovery phase which always seems to take foreverrrrr! Make sure you take some time for yourself too. Even taking a scenic drive or long walk in the evening helps you to better focus on whats most important and to clear your head. Everybody going thru this will need a hand once in a while. Its ok to let someone else help, even if you have a relative or close friend help drive Sue to treatments it will be a nice break for you. As I mentioned to another newer member, the American Cancer Society (ACS) has a volunteer driver program where they have people who are survivors and caregivers drive cancer patients to their appointments. I suggest calling ACS who is available 24/7 to get this started right away as it can take a couple weeks to set up. It is a huge help once treatments begin to have a day off. Plus it gives Sue a chance to talk with others who understand everythings shes going thru. Plus, being a stranger they make the best listeners with an unbiased opinion and they can give her some great tips too. Ive used the volunteer driver program and they were a huge help by driving me 45 minutes each way a few times. In fact, I was so impressed by their program I myself became a volunteer driver too.

Christine your reply is so comforting to both of us. Much thanks and bless you....As for the dentist, yes Sue is visiting dentist on Monday and fluoride trays are on the schedule. Our Radiology Doctor has told us he doesn't expect Sue to lose weight. Not sure why but hope that's the case. I will be going with Sue to every treatment as we, in our 40 years together have barely ever been apart. I will be checking out the CCS volunteer program which the members of the hospital staff told us about. I know it is going to me quite the journey and I am so proud of Sue as she is handling this with her usual sense of humour....I'm trying to cope and getting a bit better......At least I still have my running which takes away stress. Once again thank you so much...It's comforting to be able to get such wonderful advice.

I’m from Ontario, too. My husband was treated at Princess Margaret Hospital. The doctors there are excellent. Where is Sue being treated? I’ve found that very often nurses have good tips for the caregivers, so do talk to them and listen to what they have to say. Did the doctor tell you how many grays (units of radiation) Sue will be receiving? John got 70 grays over 35 sessions, that came to 2 grays each time. Before the radiation starts, one thing you can do is to take Sue out for all her favorites meals. It may be a while before she will be able to do it once radiation starts.

Im sorry, I missed seeing you are from Canada on your profile. I had given you info about the ACS which is in the US and wouldnt be an option for you in Ontario. Im glad Gloria checked in with you. She has a wealth of info after going thru these battles with her husband. Im sure she can be a great resource to you both

Im certain the radiation oncologist fully understands how difficult it is for oral cancer (OC) patients to hold onto their current weight. All oncologists who deal with OC know eating becomes a challenge as almost all patients encounter sore throats, very little appetite, changes in their sense of taste, mouth sores, etc while going thru rads. I can bet the doc sees in both of you your hidden traits where following directions at the same time as possessing solid inner strength to do what it takes to eliminate the cancer asap. Patients and caregivers who have that sort of drive going into this will usually fare better than those patients who try doing things their own way. After 11 years here, Ive seen far too many struggle due to not making the daily minimums of 2500 calories and 48-64 oz of water. Rads gets progressively more difficult as patients go thru it. Most patients begin to feel its effects anywhere from week 2-5. I was one who struggled thru and had my ups and downs, I didnt always make the daily intake minimums either. My low intake was what caused me to struggle. But... I also did not have a committed caregiver in my corner. Sue is very lucky to have you going thru this with her. You sound like a loving committed couple trying to do all the right things. Even with our brief interactions, I already have a good feeling and know you will be right by Sues side every step of the way.

I'm learning a lot reading through all the info Christine is posting.

I've not heard anything about the fluoride trays. I was on faculty at Indiana University School of Dentistry where Crest toothpaste was invented and they are doing ongoing studies to this day. Why the fluoride trays? My husband did go to the dentist to get dental work done as he had not gone in over 25 yrs and I was surprised about a fluoride treatment as we did not give them to anyone over 16 yrs old as it wasn't necessary.

All patients who have radiation for oral cancer (OC) should be using fluoride trays daily during and after their rads. Those who do not get the fluoride trays may have far bigger problems down the road as radiation causes major damage to teeth. During rads, your husbands physicians and dentist should have discussed how important dental care is during rads and afterwards too. Along with brushing at least 2x a day, using a waterpik on its lowest setting with a mixture of warm water and some non-alcohol mouthwash will help to keep your husbands mouth in good shape. OC patients who already went thru rads must make their dental hygiene a top priority (if they havent already done this right from the beginning of rads) for the rest of their lives with brushing and flossing after every meal. Radiation can cause osteoradionecrosis (ORN) which is basically when the jaw bone dies and causes the teeth to become very loose and/or to fall out plus it is very painful and can be difficult to treat. If a patient after rads develops areas where their jawbone becomes exposed that may be ORN. Heres more info in the links below including OCF's main site which has hours of important reading material about anything and everything to do with OC. If the dentist and oncologists missed discussing the importance of extra dental care and fluoride trays, you need to ask them about it! Since your husband already started rads I doubt he would be able to have the molds taken to get fluoride trays. I dont know if generic ones are available, check with his doc and/or dentist.

Theres a million and one things doctors, dentists and nurses should go over with their patients prior to beginning any treatments. While its very easy to miss a topic or 2, having all the medical and dental specialists all together on the same team (called team based approach) ensures every single thing of importance is discussed and understood. The doc may think the dentist would discuss the fluoride trays and dental care for OC patients but often dentists do not have OC patients as their patients but they try to treat them anyway. Im not making excuses for the lack of info provided! In my opinion, your husbands situation should NEVER happen but I can understand how easily something can be overlooked when patients have their doctors and dentists from different practices, locations and they arent affiliated at all. That can cause an even bigger lack of communication when some of the professionals the patients are counting on to help them but those professionals are not up to date with the differences between treating a regular healthy adult vs treating OC patients. Many OC patients will see dental oncologists or dental professionals who have had extra years of specialized training such as an Prosthodontist. Your husbands situation is another reason why patients should try their best to get into a Comprehensive Cancer Center (CCC). Finding out after the fact they should have been using fluoride trays to protect their teeth all along should never happen! Unfortunately it does and its almost always the patients who are being treated at smaller local facilities that find their team isnt communicating as they should or familiar enough with all the important details OC patients must know.

Your husbands lack of fluoride trays is an example of what motivated OCF's founder Brian Hill to start this nonprofit organization. Back when he was diagnosed with OC there was hardly anything available online to read about OC, treatments, recovery, dental impact, dietary info, etc without Google or other search engines available to lead patients right to it. The internet most of us first started using was so very different than what it is today. I remember using dial up and the screechy sound of the computer trying to connect to get online and how long everything took. Back then if you didnt know the web address you didnt get to that site. Boy how times have changed and we now have tons of info from countless sources right at our fingertips. We still must weed thru it to find the most reputable sources. Below are a few links about ORN I found by doing a quick search. Im sure it will help you to better understand about fluoride trays and overall dental care for OC patients.


OCF main site--- Osteoradionecrosis

Canadian Cancer Society---- Osteoradionecrosis

National Center for Biotechnology Info---- Osteoradionecrosis


Below are other helpful links to learn why attention to dental care is so important for OC patients....

RDH magazine... Hygienists caring for OC patients

Nature.com--- Dental care for OC patients

The fluoride trays are not the same as the fluoride treatment that kids get at the dentist’s. The head and neck cancer patient is advised to use the trays (which are like mouth guards with fluoride in them) for ten to 15 minutes before bedtime. It’s a long term preventative measure. My husband had really good teeth prior to radiation but he eventually slackened off after his radiation treatment (his complaint was he was having to put too many things in his mouth every night) and he promptly started getting dental decay and required root canals. Apparently the radiation did a number on the enamel.

well, interesting information here. I have heard of none of this except ENT told me in the beginning that he might lose all of his teeth. Dentists and doctors are an hour apart so no connection whatsoever...it's rural Iowa. I will mention it to him to bring up to nurses on Monday. He can barely open his mouth as it is. Big guy 6'3" and barely can open his mouth! Then me, a tiny 5'2" with a huge open mouth! thanks for the information!

Connie, my dentist gave me fluoride trays per both her opinion and the ENT I think, and hunted up a flavor I could tolerate, on top of it. I didn't use them as I should have, and that was a bad call. I think the radiation would still have done a number on me, but there's no telling ... so if your husband can get them made and will use them, it is well worth the effort to try. It hurt after a while to put anything in the mouth at all, but encourage him to do what he can, as often as he can ... he's going to want those teeth, and there's no getting them back once they're gone. (Dealing with new dentures here, and it's no picnic. Though I must say, they do look nice! But golly, learning to eat with these makes the feeding tube seem like it was a walk in the park. You can quote me if you think that would motivate him. )

Chayisun12,

In Ontario, the Canadian Cancer Society has volunteers that drive patients to their treatments. Off hand I don’t have their contact number, but i’m Sure if you ask at your hospital, they will have the info. I also came across patients who were using this service while John was in treatment. So, ChristineB didn’t really point you in the wrong direction.

good information as usual. I"m against fluoride on most accounts but this isn't most accounts so I will tell him to ask about this.

Thanks everyone for the wonderful advice and support. Sue will be having the treatments at Victoria Hospital in London Ontario. that's where she had her surgery. The folks there have been super nice and have told us that they are there for us at any time.....Well, I assume not at midnight.....As for the number of grays they didn't mention that but I've got a list of questions to ask. I showed Sue this site and she is so touched by all the comments and she feels much better. Sunday we are going out for a great meal and lots of desserts, too. Monday is dentist day....Christine, thanks for the kind comments. Sue is so special to me and we are always together through so many good times and a few bumps along the way.

By the way our daughter is named Christine. However she lives in Johannesburg, South Africa but plans on coming home in mid September to be with her Mom....

Yes, doctors always should be available even at midnight! At least thats how it is here in the US. There is always a doctor on call 24/7/365 no matter what time of day. After the doctors offices close, an answering service will answer calls and in turn call the doctor who will return emergency phone calls. Ive only had to do this a couple times in my life and always had someone call me back within a couple minutes.

We all need help to get thru some of the most difficult things in our lives. Im glad you showed Sue everything we have talked about. OCF's members are the best!!! I had a heck of a time with treatments soon after I joined this group. I was amazed at how perfect strangers quickly turned into some of my best friends and helped me every single step of the way. Im still in touch with those people today, 11 years later. We all have a common bond which makes us like a huge extended family. It takes a village...

We will be here for you both and help you get thru it too

Chayison12,

At Princess Margaret Hospital there is an after hours phone number that patients can call for advice. I have done that several times. I called, left my phone number and the nurse called back after about 5 minutes. Do find out if they have that service at Victoria Hospital. It should be available for weekends too. Of course, for the more serious situations, your local ER is where you should go. I have no clue what the e-Health situation is now, but sometimes they can access files at another hospital. I know for sure this is true at the University Health Network in Toronto. Also, doctors and ER staff will call your doctor/clinic to ascertain the facts if necessary. Ask them to do that if necessary. When John developed deep vein thrombosis, I took him on the weekend to the Er at our local hospital in Markham. By Monday when he went back for his radiation treatment, they already had his consultation with the thrombosis clinic booked and st up. There is also the possibility of getting help from a visiting nurse from Community Care Access if the ER doctors/hospital doctors feel it is warranted. I had all the help I needed that way. John also got extra hydration at the radiation treatment centre. We just had to ask. He had the blisters on his neck looked at and the nurse taught me about using saline soaks. Be proactive and ask. Sometimes it’s not that the doctors don’t want to tell the patients, I feel it is more a situation of everyone assuming someone else has told the patient.

Chayison...

I sent you a private message (PM). To go to your PMs, click on the tiny flashing envelope next to your My Stuff tab near the top of any page in the middle of the OCF menu bar.

Thank you

Thanks Christine I read it. Much appreciated...Anyway, today Sue and I visited the dentist at Victoria Hospital and had a nice conversation with the dentist. Got all set up with the fluoride trays and instructions on how to use them and emphasized that this is a lifetime commitment. The Dentist has booked an appointment to see Sue after her first treatment to see how she is doing. Also, she will be seeing Sue after the second, third weeks and told Sue if she needs to talk to her to call the office. The dentist will also see Sue after her final treatment. Sue and the dentist spent time talking about travelling and talked to her about what to use and what to avoid. She is going to touch base with our regular dentist to keep her up to date......Now we prepare for the first treatment on Friday. We are to meet with the radiologist before the treatment and I have a list of questions to ask.

Thanks for "listening" to our concerns and much thanks to everyone for their wonderful replies. Be so glad when this is all over.....Sue and I are talking about becoming volunteers at the hospital. We have the paperwork...….

Just received a phone call from the radiologist and, after reviewing Sue's CT scan and MRI, he told Sue that they have located cancer cells in the lymph node and that the radiation treatments are on hold and surgery is to be done to remove the node and the cancer. After that Sue will need the radiation treatment. I'm hoping this is better news in that the cancer is centralized and removable. He told Sue not to worry that she is in good hands.....Goodess, I hope so.....

Sue is so much better off doing surgery first so she is able to recover before going to rads. Usually patients start rads 6-8 weeks after a surgery. Radiation makes healing more of a challenge so that why I said its best to do surgery first. Best wishes with everything!!!

Well, Sue had the second surgery and, according to the surgeon, all went well. He said they did remove all the lymph nodes and some other areas as well. He also said that he got it all. She has some numbness in her right ear area and her smile is a bit off but we are told that will get better over time. We had a long talk with the radiologist, asked many questions and he believes that Sue will handle the radiation treatments with little problem. We see the surgeon on October 23 and then radiation starts on October 29 for six weeks and each treatment will be 2 minutes. One thing that worried I asked the radiologist what stage of cancer it was and he told us it was a stage three as the cancer had invaded the lymph nodes but told us not to worry about that as the surgery was successful.

All in all Sue received great treatment from the team and for that we are so thankful. Also, a big thank you to Christine B. for the kind words and to all those that gave us good wishes and advice, many thanks.