The Results are In - Oral Cancer Support - Survivor / Patient Forum

Dad's cancer is back.

It now looks like he has a tennis ball growing on the side of his neck. Much different in size from where it was three weeks ago. Today we met with the surgeon and here is what we have been told.

It is inoperable at this time. We have an appointment with the RO on Thursday at 9:00 AM to discuss possible radiation combined with chemo. IF the radiation can shrink the tumor then they MAY be able to operate, but chances are the whole tumor will not be able to be removed due to the location. (Who knows if he could even survive another surgery) We aren't even sure yet if radiation is a viable option. If the cancer spreads it will more than likely spread down rather than up. The good news is that his lungs are clear as of today.

I'm going with Dad to his appointment on Thursday. I'm looking for help with composing questions that I should ask the RO with regards to his treatment options. If anyone could help me out and give me some suggestions for questions I would greatly appreciate it. I'm feeling a little brain dead at this point.

This just sucks.

Dear Joy, so sorry to hear this bad news.
I guess my main question would be exploring his "quality of life" issues based on each of the proposed treatment plans, so that everyone knows what the options [not just treatment, but after tx] are. Best wishes to you, Amy in the Ozarks

Dear Joy: Just wanted to say that we're thinking of you and your family during this time. Keep us informed.

Lois & Buzz in NC

I am so sorry to hear of your bad news. I know how much of an emotional roller coaster ride the reoccurrences cause.

I agree that the quality of live is the most important thing to think about. Make sure that your Dad's wishes are followed. Find out what the chances are of beating this before they put him threw too much more tx. Radiation might be very difficult on him with him already having a heart problem.

I wish the best for your Dad and your family.

Praying for you!
Debbie

Thank y'all for your quick responses. Quality of life is a big issue here for us. I know if they say 6 months with no treatment, one year with, that he will forego treatment and make the most of what time he has left.

Dad just finished radiation this past August. He did very well - mild side effects of what I'd read about out here. I'm afraid that if they are able to radiate again that it will be brutal. He wanted no parts of the feeding tube before. I'm afraid this time it may not be an option. He's not going to like that.

PLease know that my thoughts are with you and your dad tonight !

Shar

Thanks everyone for your thoughts and prayers. It is what got us through the first round of battling the beast.

I don't know if I have ever told everyone out here, but my Dad is a preacher and he loves it when I tell him that people are praying for him. He knows that I come here daily and that I draw support and encouragement from each of you.

Thank you again for your thoughts, prayers and support during this journey.

Much love and hugs,

Joy

We met with the RO yesterday. I came out here last night to post, but before I could post anything my IE locked up and I lost it all. I was too exhausted to try again.

Dad will have 35 treatments of IMRT. (Last round of radiation was 3D) They are not sure if it will be two treatments a day for the first three weeks or if it will only be one time a day for 7 weeks. He gets fitted for his new mask on Monday and treatments should start soon afterwards.

They are setting up an appointment with the MO. The RO seemed to think that he will have chemo once a week while having radiation.

The pain is increasing. They have prescribed a Fentanyl patch along with percocet for break through pain.

Here we go again, only this time it's going to be a tougher battle.

Joy

Hi Joy,

I'm so sorry you're going through this. I wish I could wave a magic fairy wand, but I can't. You have friends here and we're all here for you.
Hugs to you and your dad.

Hi Joy,
I'm really sorry to hear about your father. But, it's an encouraging sign that they have more radiation they can give him, more treatments. It'll be tough but he and you can do it.

I live in Va. Beach, mind me asking what hospital you go to and what doctor?

Take care,
Minnie

Good Morning Joy,
Tell the Preacher I will send out an e-mail to my prayer group and have him and all of you placed on the prayer tree. What is your father's first name?

God Bless you all.
Donna

My thoughts and prayers are with you and your father every day. Your father being a preacher I'm sure understands that he is not alone in this battle. Let God give you the strength you will need to continue to be his very important caregiver. My wife just went thru a similar situation with her father who had lung cancer. I was so proud of her the way she was there for her father. Her dad could'nt speak but I could see in his eyes how much it meant to him for her to be there. These moments are precious. Your support and love are stronger medicine than any treatment the doctors will be giving him.
GOD BLESS
TIM AXEL

Sue, I wish I had a magic wand too, not just for my dad, but for everyone out here who has to go through this. I'm thankful for this site, as I dont now how we would have gotten this far without it. I'm glad you are here now.

Minnie, we go to VCU Medical Center, which I still refer to as MCV. His radiation treatments will be done at the Massey Cancer Clinic at the Main Campus in downtown Richmond. It's about an hour away from my parents house as they live just west of Richmond. His H&N surgeon is Dinardo. We are encouraged that they can do more treatments. Mom was worried that they would not be able to radiate. She was so relieved when I called to let her know they could. We know the radiation will be tough, and now we are concerned about the chemo. Maybe we will feel better once we meet with the MO and find out what thats going to be all about.

Donna, Dad's first name is Jim. Mom's name is Jean. We all have names that start with J. I carried on the tradition with my daughter and she has done the same. Eight out of 11 of us at Thanksgiving had a J name. Sometimes we get a little tongue tied if we are all together and call each other by the wrong name. Thanks for adding him to your prayer tree. Our prayer is for his comfort during all this.

Thanks for all of the support. I can't imagine going through all this without you all.

Joy, I'm so sorry that your dad has endured so much this year and has yet to endure more.

I'm glad there is the option to do the radiation. We will include your family in our prayers and we will be watching the board for updates.

I remember being so impressed with how your 75 year old dad made it through radiation treatments so much better than my 48 year old husband. I am sure it might be tougher to endure a 2nd round so soon. Although, I'm thankful that your dad has you and your mom to help him through this.

Joy,
So in my thoughts!
Quality of life is everything for me--I really thought I would be dead by May, wondered whether it was worth planting summer plants--did and enjoyed a season at my caravan which I didn't think I would!
Now just done transatlantic trip to see my 'best-beloved' daughter.
Treatment so far has been 'good to me'--I've managed and thin hair, some mild nausea and a lot of tiredness have been the worst--peanunts compared with what others have endured!
Just go with 'whatever' you, your dad, and the docs reckon will work for you all!

Love3 Bren x

Joy,
What number are you in the family? Ihave two daughters, Jacklyn and Jessica....can't imagine more J's, let alone 11!! I stumble everytime they are in trouble,,,"j'h!" oh boy! Good thing they are good kids!!
Ok...so far, I have rec'd 132 replies for the "J" family, expect at least 155. Tell Jim and Jean they are in good hands, as are everyone here!
My mom couldn't have surgery because they found that she had heart issues when they went in for pre-op testing. Mom was given Erbitux. She faired well.
Joy, I hope you enjoy the rest of your weekend. Try to take a few moments for yourself...that's what the good folks here are always telling me!

Tim - I've always been the closest to my parents. Now, more than ever I see the love in his eyes for me. It is precious, and these times, even though tough, are the times that I will carry with me for the rest of my life. Without a doubt we know that we were carried on the wings of prayers through the first round of this battle.

Margaret, I too was amazed at how well dad did during the radiation. I read with horror all the side effects that others have experienced and after every treatment I wondered when they were going to start to hit dad. I feel like sometimes he is the only one to not have the feeding tube. Even when food lost its taste and it hurt to swallow, he didn't give up. We didn't have to nag, he knew he must eat. This round of radiation will kill the salivary glands on the left side and salivary function will more than likely be almost non existant. I am so worried that swallowing will become so difficult that a feeding tube will be mandatory. Dad still refuses to go that route. But, we are focusing on today and will worry about tomorrow when it gets here.

Bren - You are truly an inspiration. I read my mom your post regarding your trip here to the states to surprise your daughter. I'm so glad you were able to make the trip and spend time with her. I think it's wonderful that she has also joined you out here on the board. I guess next time you plan a surprise visit to her it will be a surprise to us all!

Donna - I am number 3 of 3. My sister is oldest - Jamie, brother - Jeff, then me. Next is my daughter Jennifer who married a Josh and they have a son Jaden. Mom & Dad's dog is named Julie. My daughters dog is Jupiter. Now if we really want to get wierd we could go on to middle names, which all start with the same letter too....hahaha....Dad and brother are JEP, girls were JLP. My daughter is now a JLC, her husband and son are JAC. When I spoke to dad earlier today I told him that friends of mine from out here that lived in PA were adding him to their prayer tree. He was so PLEASED and asked that I let you know how much he appreciated all the prayers.

Thanks again to everyone for your replies and support. I'm feeling better now knowing that we won't be facing this alone.

Hugs,

Joy

Joy,

Sorry to hear about your dad, and what your family will have to go through again. Please try to talk your dad into getting the PEG, it will make it easier for him to stay hydrated and nourished, and be easier for the caregivers, too. My sister was also taking percoset for the pain, but it took too long to work and the pain would increase to level 10 in less than 15-20 minutes. When her doctor prescribed her roxanol ( sort of like a liquid morphine), it was so much more effective in controlling the pain. I wish you, your dad and family the best, and will be thinking of all of you as you battle the beast again. Hope you slay it forever, never to return again. Godspeed to all.
Nancy

Joy....I am behind in reading on the forum, and I am so sorry to hear about your dad's recurrence. It surely doesn't seem fair, does it, but then that is not even up for discussion, especially with your dad. I am sorry that he..and your family...have to go through this again, but perhaps with the radiation focused on his neck, it won't be quite as bad as before.

Please tell your father that I will add him to my prayer list, in hopes that his treatments are not difficult, and that they will destroy this cancer once and for all.

XO--Colleen

Nancy, thanks for the advice. Dad knows that a PEG tube may not be avoided this time, however he still does not want it. I don't mention it to him, but he did bring it up when we were at the doctors office and he said, "I don't want that". To try to talk him into something right now would only be upsetting to him. If the day comes that he needs it, he will know that it is unavoidable and will do what he has to do to get better. Dads pain is increasing daily even with two patches on and the percocet for break thru pain. We will take your suggestion about the roxanol before the MO on Friday when they have that appointment. My boss is a pharmacist and he will be in the office next week. I plan to talk to him too about other pain management options as well.

Colleen, Dad was so pleased with your recent clear scan. He said (jokingly, not sadly) "I wish I had made it two years.....I wish I had made it for two months!" He said to thank you for the prayers...keep them coming! I wish he were at least a little computer literate so he could come out here and talk to everyone directly, but sometimes I'm grateful that he's not. You and this board have provided so much valuable information. I can't imagine going through this without it and each of you.

Just a quick update: Radiation will start on the 17th. He meets with the MO on Friday to find out about the chemo. He met with the prosthodontist Tuesday. We were so hoping that they would be able to make him a set of uppers this time (All he wanted for Christmas was a set of upper teeth

) but because of the upcoming treatment it will be March before it even becomes a possibility. They also made an impression of his lower teeth, which is something they had not done before. It is a possibility that he may now loose the lower teeth due to the radiation. Wasn't exactly what we wanted to hear, but it is what it is.

Thanks again for all the thoughts and prayers. They are very much appreciated.

Hugs,

Joy

Joy
Haven't been here in a while and now two thoughts ONE your Dad seems to have his perspective in order and his resources YOU in place KEEP COMMUNICATING! You are amazing. Good stuff.
TWO Prayer has something?? what? Your Dad has ours cause somehow that power helped us Huge....
Peace
Denise

Hi Denise, Thanks for the prayers. We know how much of a help they are. I wouldn't say that I'm amazing, just doing what any good daughter would do. Dad has been taking care of me my whole life (even after I've been out on my own for many years). Now it's his turn to sit back, get well and let me do for him. If I am amazing it's because I had good role models.

Update: Tuesdays will be chemo days. He will receive 7 treatments of Cisplatin. His pain is still increasing, but the MO has now taken over the pain management side. So now he is on 50 ml patches of Fentanyl along with Percocet for the break through pain. We are encouraging him to take the Percocet more often than he has been in order to get the pain under control. I think he is starting to understand.

Thanks again to everyone for all the thoughts, prayers, and words of encouragement. I can't say enough about how much we appreciate them at this time.

Hugs,

Joy

Hi Joy

good luck with all your dad is going through,it will be tough on you as well so i hope you like me will find the strength you need with the help and support of all the special people on this forum.

love liz

Liz,

There are some truly remarkable people out here. You included. It took me from March until June to find this forum. I so wish I had found it back at the begining. But thats all in the past and the important thing is that I'm here now. I'm feeling much stronger and I know that I'm not alone. I just wish we were all closer.

Enjoy your vacation!

Joy

PS. I'm glad you got good news at your appointment