New caregiver need advise

irishlass258

Hello to all, I am new to this entire process. My husband was just diagnosed with  2.5cm mass on base of tongue. He also has a spot on lung found by accident when is CT scan was done. The surgeon said no surgery because it is too large. We meet with the radiologist on Tuesday. What questions should we ask about his situation so we are informed about it and to help in planning a treatment plan?

Thanks for any help you can give. 

Barbaraek

Welcome

Irishlass. You have found a good place to be...even though you are in a tough situation. Here you will find a place for support, information and encouragement. One thing you might want to do is read the superthread at the beginning of the messages. After that you can search for answers to more specific questions by typing key words under "search CSN content".

Take a deep breath and see what the treatment options are. Is surgery out completely or will they try and shrink the tumor and then reassess? How much radiation? Will there be any concurrent chemotherapy? Is the spot on the lung metastasized from the SCC? I guess those are the questions I would start with. You will also want to know how the tumor is "staged" because that helps determine treatment options.

I would advise you to ask questions here and make a list for your health provider team. Don't "google" too much because you can read sketchy information and get depressed pretty quickly. That is not what you need right now. Stick to sites like the American Cancer Society, National Cancer Institutes and NCCN.

This is a treatable disease, but it is a rough rough ride. As a caregiver don't forget to take care of yourself also so you can be the best help possible to your husband.

We'll keep you in our prayers...

Barbara 

 

 

wmc

Welcome to the H&N Group

Welcome, and also sorry you need to be here. There is many on here who also were BOT. Question is have you only been seen by a local doctor, or have you gone to a Major cancer hospital? I ask be cause the largers have you go to what is called a Tumor Board. That is where you are seen by all the doctors, Surgeon, Chemo, Radiation ONC, Radiologist to read xrays, and even nutritionist, and they all get together and decide what is the best corse to treat you. I was Stage 3 just above my vocal cords, 3cm x2.5 cm and surgery was my only option. 

This is very hard on the caregiver. When you go to see any doctor, writh your questions down and leave room to write the answer. Just hand it to the doctor, and he should answer all of them and when he answere you don't go blank and forget your questions. My doctor wrote the answers down as he explained them. This is a rough road you're going down, but it is very beatable. Just know you are not alone in this. You might want to read the Superthread which is always the first post, and it has terms and many answers.

Bill

the_wife

Questions

I don't know anything about base of tongue cancer. My husband had tonsil cancer. In his case he was offered to participate in a trial. I'm not sure with this type of cancer if that is an option or not. 

You might ask what will the treatment be like? Will he need full time care? Will he be able to work? How do most patients respond? What are the survival rates for his type of cancer? You will want to be prepared for the months ahead and the day to day practical aspects of caregiving, if needed.

The problem is there's no way to know how an individual will respond to treatment because everyone is different. They should be able to answer you in general terms how most patients respond. But there are always exceptions. For example, I never dreamed that chemo would be so hard on my husband that the first treatment almost did him in. 

I recommend researching as much as possible on some reliable websites. Knowledge is power. As you read, just write down whatever comes to mind. Are you set on a particular clinic yet? You will want to know how your chosen clinic compares to others, what guidelines they follow, what support programs they have for his type of cancer, what kind of follow up, what is their approach, etc. Most of the larger clinics have a team approach especially for this type of cancer. 

I know it's hard when they say ask questions and you have no idea what to ask. I usually write down as much as possible what the doc says during the appt. and as you're talking, questions will certainly arise. You can always call the nurse with questions after the appointment if needed. 

I hope this helps.

Good luck to you!

irishlass258

the_wife said:

Questions

I don't know anything about base of tongue cancer. My husband had tonsil cancer. In his case he was offered to participate in a trial. I'm not sure with this type of cancer if that is an option or not. 

You might ask what will the treatment be like? Will he need full time care? Will he be able to work? How do most patients respond? What are the survival rates for his type of cancer? You will want to be prepared for the months ahead and the day to day practical aspects of caregiving, if needed.

The problem is there's no way to know how an individual will respond to treatment because everyone is different. They should be able to answer you in general terms how most patients respond. But there are always exceptions. For example, I never dreamed that chemo would be so hard on my husband that the first treatment almost did him in. 

I recommend researching as much as possible on some reliable websites. Knowledge is power. As you read, just write down whatever comes to mind. Are you set on a particular clinic yet? You will want to know how your chosen clinic compares to others, what guidelines they follow, what support programs they have for his type of cancer, what kind of follow up, what is their approach, etc. Most of the larger clinics have a team approach especially for this type of cancer. 

I know it's hard when they say ask questions and you have no idea what to ask. I usually write down as much as possible what the doc says during the appt. and as you're talking, questions will certainly arise. You can always call the nurse with questions after the appointment if needed. 

I hope this helps.

Good luck to you!

Thank you

Thank you all for your ideas and concerns. This all happened so quickly. My husband was in hospital for 2 weeks in June for blood clots caused by A-Fib. In Sept. he had a sore throat that wouldn't go away. Was given antibiotics, an antacids. Followup with ENT ordered a cat scan. He also made an appointment with surgeon. WAs able to get PET wscan because of lung mass. I feel like I am in a fog! 

I made a list of what I feel are important questions. Now have to wait until Tuesday!.

Will report what Ive learned.

MrsBD

Welcome

Welcome. It's good you've found this site because it will be a valuable source of information and support for you as it was for me. I had radiation and cetuximab for BOT cancer,  but no surgery. Interestingly, I also had been hospitalized for a-fib  few months earlier. You've been given good advice from the previous posters, so I would just like you to know we'll be here for you with prayers and support.

irishlass258

MrsBD said:

Welcome

Welcome. It's good you've found this site because it will be a valuable source of information and support for you as it was for me. I had radiation and cetuximab for BOT cancer,  but no surgery. Interestingly, I also had been hospitalized for a-fib  few months earlier. You've been given good advice from the previous posters, so I would just like you to know we'll be here for you with prayers and support.

Thank you

Good to know, MrsBD. How long ago did you have treatment? How did it go.

I have really learned alot from reading these comments. I feel a little better and have written down some questions. The hardest part is being strong and encouraging for hubby.  I plan on coming back often to get advice and answer to questions i have.

swopoe

Welcome

I am a caregiver too. My husband was diagnosed with oral tongue cancer (stage 1) in October, had surgery in November, and started radiation and chemo on December 8th. As a caregiver, I wanted all the information I could get from the doctors, nurses, etc. the more information I have, the better and more powerful I feel. I didn't want to be kept in the dark about a single thing. They may all hate me already because I ask so many questions, scientific ones even. But, I am my husband's advocate. That is my role. And I am serious about it. So I am never afraid to speak up.

Anyway, get a notebook and a calendar and take notes and write questions before appointments so you don't forget. Keep a folder for important papers too. I am currently keeping track of all the things my husband has to do everyday now. It is like having another job or taking care of another child, even though my husband still feels great and is still working. It is just best for me to keep on top of things for him.

i am glad you found us, but as others have said, sorry you have to be here. I know I am a newbie, but I have already gotten so much support from the members here. This is a great place. Good luck to you and your husband. You are in my thoughts and prayers.

Nadine

MrsBD

irishlass258 said:

Thank you

Good to know, MrsBD. How long ago did you have treatment? How did it go.

I have really learned alot from reading these comments. I feel a little better and have written down some questions. The hardest part is being strong and encouraging for hubby.  I plan on coming back often to get advice and answer to questions i have.

Update

It's a scary time, and we've all been there. It's good that you're finding the site helpful already. We'll be here for you every step of the way. You asked about my experience.  In July, 2014,  a lymph node biopsy led to the diagnosis of Stage 4 BOT cancer which had spread to one node on each side of my neck. It was pretty unexpected since I never smoked or drank, and was HPV negative. I had been feeling wiped out, had tons of a-fib, and an odd white cell count, in addition to a mild sore throat. They did 33 sessions of IMRT (radiation) and 8 infusions of Erbitux, but no surgery.Treatment was finished on October 3, 2014, so it's been 14 months. The treatment was hard, but I have only a few and very minor lingering effects. I feel very blessed to be cancer free! It's been said by several others that the treatment is harder on the caregiver than the patient,  and that's true. I did a lot of sleeping while my husband did the worrying! Be sure to take care of yourself, eat well, rest, and get support lined up from work, church, friends, and family. You'll be in my prayers.

irishlass258

swopoe said:

Welcome

I am a caregiver too. My husband was diagnosed with oral tongue cancer (stage 1) in October, had surgery in November, and started radiation and chemo on December 8th. As a caregiver, I wanted all the information I could get from the doctors, nurses, etc. the more information I have, the better and more powerful I feel. I didn't want to be kept in the dark about a single thing. They may all hate me already because I ask so many questions, scientific ones even. But, I am my husband's advocate. That is my role. And I am serious about it. So I am never afraid to speak up.

Anyway, get a notebook and a calendar and take notes and write questions before appointments so you don't forget. Keep a folder for important papers too. I am currently keeping track of all the things my husband has to do everyday now. It is like having another job or taking care of another child, even though my husband still feels great and is still working. It is just best for me to keep on top of things for him.

i am glad you found us, but as others have said, sorry you have to be here. I know I am a newbie, but I have already gotten so much support from the members here. This is a great place. Good luck to you and your husband. You are in my thoughts and prayers.

Nadine

swopoe

Thank you for your suggestions. Yes, I feel it is my reponsibility to support him and be as informed as possible. It is so nice to have this forum to go to for information and support. I am glad there are caregivers on her because they understand this journey in a different way. 

Thank you. I too wish you and your husband the best. Prayers are wonderful and I will be proaying for all in this group.