Need some encouragement

Nicole
Welcome to the place nobody really wants to be. That being said, you've found a great place to call home.
First of all let me just tell you that treatment for H&N (head and neck) cancer has come a very long way. It is much more successful than ever before.
Secondly your dad has his young age on his side. Treatment is tough but doable.
I highly recommend you not searching all over the Internet for information. Most of the information is outdated, doesn't apply to your dads situation and frankly can be written by anyone who thinks they know what they are talking about. It will only scare you and make you crazy at the same time.
Stay here with us and I promise you'll get honest answers from those of us who've gone thru it or are going thru it either as a patient or caregiver.

I don't know where your dad is located but if you are looking for doctors or facilities for a second opinion or actual treatment and feel comfortable telling
us his location, there may just be one of us in the area who can refer him to
someone. You can also direct him to this site and have home join as well. I
wish I had found this place just as I was starting out, it would have been so
helpful. As it turned out, I found this site at the very end of my treatment.




I am 9 months out of treatment and and my latest scans 2 weeks ago show NED (no evidence of disease). I was 45 when I was diagnosed and like your dad, never smoked and physically fit. My SCC however tested negative for HPV. There is evidence that HPV SCC responds extremely well to this treatment.

As far as helping your dad from afar, just share with him this site and let him know that so many of us are in really good places right now. Treatment will be tough but doable and that there are lots of folks here who can answer any question either of you may have...no question is off limits.
Just him knowing you care and love him is perfect...trust me with my husband and kids showing such concern and support, I felt like I had everything I needed to get this crazy process.

Take care and again...Welcome.
Billie

nnjohnson31 said:

Thank you so much

Thank you all so much for your encouraging words. I am very happy to have found this site. I would love for my dad to join this site and I am definitely going to tell him and my step mom about it. We are near Columbus OH. Thankfully, we have the majority of our family within 30 miles of the area. My sister-in-law works at the James, so she set my dad up with some great doctors. We are all doing our best to keep his spirits up. 

His next appointment is some sort of a scan (not sure which one) to see where it has spread. I am assuming that is when we will know more details about the stage and such. 

Thank you again so much! I am already feeling better. Gotta stay strong  

Nicole

A number of people here have been

treated at James....so your dad is in good hands.  He's probably going to have a PET scan, and you're right....it shows all the details,  like the exact location and helps with the staging.

p

phrannie51 said:

A number of people here have been

treated at James....so your dad is in good hands.  He's probably going to have a PET scan, and you're right....it shows all the details,  like the exact location and helps with the staging.

p

Nicole

Sorry you had to find us but happy you did. I recall when I had to tell my Mother, spouse and siblings about my dx. I started by telling them the doctor said it was treatable and cureable but it was cancer. Even after surgery, chemo, rads and 4 clean scans, I remind myself of what he said when I get scared. It's o.k. and normal to be scared. Honestly, I think my journey was harder on my family than on me. I have always found great comfort in the poem "Footprints in the sand". Your family can get through this together and will likely come out stronger on the other side. Cancer has a way of reminding us what is important in life. I will keep your family in my prayers and hope your Dad's journey is easier than anticipated.

Candi 

Organization is Critical

The cancer is very treatable as others have said.  For me the most important part was keeping organizaed.  Getting the correct information requires work, doctors will do their best, but it will be up to you, your dad and whoever is the caregiver to ask the right questions and to keep the files and appointments organized.  Binders and folders are most helpful.  A rough road ahead but a very rewarding one.  Ask questions on here is very helpful as someone and often many of us have already gone though exactly what you dad will and will help by telling what we did and what happened.

That said every case is a little different and if you have a great doctor team they will guide you in the right direction.

Second opinions never hurt, not always needed, but sometimes they are invaluable.

Hip, lip sisters!

My sister had hip surgery on the same day that I had my first surgery.  We live 2 1/2 hours away from each other.  She was so concerned that she could not be here to help me during my recovery and treatment.  I understood completely.  We talked almost daily.  I told her that the phone calls helped me get my speech back so well.  Stay in contact with your loved one, sometimes it will be through the caregiver.  Express your thankfulness to those that can be with him daily.  Make plans to get to his home to help or relieve your family, they will need and appreciate it.

What a daughter can do

Nicole,

Welcome to this site.  Like your dad, I am in my fifties, never smoked, exercise regularly and was hit with the SCC diagnosis.  

This is site has a wealth of information and lots of advice and support who have been through it all.  I had surgery three weeks ago and will be starting radiation treatments in a week, so I am pretty new to this too.  There are a lot of unknowns in the first few weeks after getting the diagnosis, but gradually your dad and you will know more about the diagnosis, cancer stage, treatment plan and prognosis.  Your dad and you and your family should ask a lot of questions of the doctors.  Don't pay much attention to online statistics about survival rates because they are dated and there are much better treatments now than there were ten years ago.  Try to be patient until the doctors have the information they need to give you a solid diagnosis and treatment plan.  Sometimes surgery is needed not just to remove a tumor but also to biopsy tissues so that a full diagnosis can be made.  My full diagnosis was done after my surgery because they were able to locate the original site of my cancer, in the base of my tongue, which then spread to the lymph nodes. 

You are a great daughter to be concerned about your dad and to be taking the initiative to check out this site.  I have a daughter, 27, who lives a long way away, but she calls me almost every day or sends me a nice email with a "positive thought," a funny video, an interesting article.  She flew home to be with me for my surgery and a few days afterwards while I was in the hospital, and her presence was really helpful and encouraging to me.  Most likely your dad will need surgery followed by radiation with or without chemotherapy.  The whole course of treatment will take many months.  My advice to you is to pace yourself.  Be there when you can and for the most important events such as the surgery, but I am sure your father will  not want you to give up your life and your education for many months to be with him all the time.   I hope that there are other family members or friends who can be part of your dad's support team.  If not, there are usually volunteer organizations and services who can help out. 

What means the most to me is that my daughter loves me and cares about me, supports me, thinks about me, and gives me regular words of encouragement, even though it is from afar.  Positive mental attitude is one of the most important factors in beating this cancer, and you can do a lot to help your dad with this.  Don't be discouraged if he feels depressed or discouraged despite your encouragement.  That is normal...don't give up.   

M

 

 

Nichole,
Ironically I found

Nichole,

Ironically I found out my mother had throat cancer in early April of this year.  I feel like we're going through very similar things.  My family is a "hot mess" right now, I live a plane trip away from home, and I am working on my master's thesis right now.  If you ever need to talk feel free to message me.  I feel like we're both incredibly stressed out and wanting to help, but finding it difficult! 

Betsy

evanbe01 said:

Nichole,
Ironically I found

Nichole,

Ironically I found out my mother had throat cancer in early April of this year.  I feel like we're going through very similar things.  My family is a "hot mess" right now, I live a plane trip away from home, and I am working on my master's thesis right now.  If you ever need to talk feel free to message me.  I feel like we're both incredibly stressed out and wanting to help, but finding it difficult! 

Betsy

Welcome Betsy...

You should start a new thread and introduce yourself, and your situation...

You'll find more support from the many awesome folks on here than you will have ever realized...

Best,

John

nnjohnson31 said:

good news, i think!

Thank you all so much for your kind words! 

After reading your posts last week I instantly felt a weight lifted off my shoulders. The first few days after we found out were rough, but after that, my dad went right back to his routine. Today was the PET scan and I think I have good news. 

They said it was stage 4 and it was on the back of his tounge and had spread to the lymph nodes. They also said that it would be about 7 weeks of radiation and chemo treatments without any surgery. Everyone is still nervous, but I can tell that just knowing and having a plan has put everyone at ease. I can especially tell that he feels so much better. He told me that he was going to need a WVU hat for when he starts treatments, so I think that I will put together a care package (thanks for the suggestion!!) with a few of his favorite teams. 

I will keep you updated on his treatments. I'm sure I will have some questions (that's the student in me) becasue I am not sure what to expect. The doctors have been AMAZING. They are so kind and sincere; we are very happy.

I cannot thank everyone enough for all that you have done. Without this site, I would still be in the dark reading about all of the wrong things. I am so thankful that you shared your experiences with me, and I am inspired by each and everyone of you! 

 

Nicole 

Good news

I'm glad you are feeling good about the doctors and treatment.  I and others on this discussion board had a very similar diagnosis (base of tongue, spread to lymph nodes).  Others are farther along, but any of us will be happy to answer your questions.

M