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Need some encouragement

nnjohnson31's picture
nnjohnson31
Posts: 5
Joined: Apr 2013

Hello all!

I am new to this, so I am not really sure what to do. I am beyond thankful to have found this site. Just reading all of the posts give me great comfort. So yesterday my dad went to the hospital to get a golf ball size lump on his neck checked out. The results of a biopsy came back to be SCC. It is still very early in all of this, but my family is a hot mess. I would like to think that I am a strong person, but I am finding it hard to keep composure around my family. I am the most concerned about how my dad is taking it. He is 55, doesn't smoke, and works out regularly. The doctor thinks that HPV is in the picture. He is taking everything pretty hard and is very scared. I feel so helpless.. I just need some encouraging words. I am in the midst of getting my master's and am over 3 hours away from home. What is the best way to "be there" without physically being there.

Thank you so much for your time! Just getting this out has already helped so much!!

-Nicole

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Dear Nicole! I'm sooo glad you found this board, because for me it was the most helpful thing in the whole ordeal! People here are more than helpful! You will get true support, prayers, info, advice, suggestions... everything you're looking for!! It was life saving for me and my family! So please stay with us!

My dad was in the same boat last year, and was finaly diagnosed on May 30th 2012. He had a golf ball size lump on the left side of the neck too. The treatment was no walk in the park but doctors did everything to help him, so it is highly doable! I know that you and your family is totally scared now and this is very normal! But I believe everything will be just fine! You can see here how many people receive their NED's (No evidence of desease) after treatments are done... and they stay healthy.

So, just stay with us and we will get you thru this! My mom and I were totally messed out when we found out. But it soon gets better when treatment plan is set and you know you're on a good way to beat this beast!

My thoughts and prayers are with you!

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

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

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Nicole,

 

Welcome to the H&N forum, sorry you have to be here.

 

First you might want to acquaint your self with the Superthread, which is located at the top of the opening page.  It is full of useful information.

 

You might try to introduce your parents to this site and they could ask questions directly, otherwise you may need to relay information as needed.

 

Depending on your schedule, just showing interest and support can mean a lot.

 

Quite often the folks here can answer a question you may have.  We have all lived the cancer battle and are here to lend a hand and add moral support.

 

Stay in touch,

 

Matt

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

I can tell you that you have found the greatest site on the internet for encouragement, empathy, information, and support....everyone here is wonderful!!

I agree that encouraging your parents, one, the other or both to join this forum would be the best possible thing that could happen....but I also know some people shy away from forums, or simply have never had a interest in one.  You can pass a lot of information their way, tho....many of our members are the caretakers.....and we have never "spoke" to the patient, themselves.  For sure you will walk away from here with information to pass along to your parents.

Treatment can be a bi*ch.....but we all got thru it, and so will your dad.  Not a patient or a caretaker here wasn't scared to death when they got here.....it's a real blow to be tooling down the road of life, and find out that this knot on your neck is out to kill ya.  For many it's the first time in our lives that our worst dreams were actually realized.  One of our members who doesn't post anymore told me and so many others...."this is a bump in the hwy of life.....you've hit some gravel, but it will be smooth sailing again.....BELIEVE".....so I'm passing that on to you.  He also said "you're going to survive this, so get used to the idea"....Your dad is going into a tunnel for a while, but he will emerge at the other end just like the rest of us....BELIEVE that.

For the time being, just hang tough with us.....we'll tuck you in our pockets, and under our wings...

p

nnjohnson31's picture
nnjohnson31
Posts: 5
Joined: Apr 2013

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

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

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

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

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 

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Your father sounds much like I did, actually the same age and history when Dx, other than having cancer I was in perfect health...

First between both you and your father..., it's very treatable...and though Tx is the same whether HPV or not, HPV does respond well to the Tx.

Mine started as a slight irritation in my throat that wouldn't go away for a few months..., tried antibiotics, but no good. Eventually was eferred to an ENT, and before I seen him a lump popped up on that same side (making me STGIII)...

Keeping a positive attitude is huge during treatment... Just assure him that he has a huge chance of full recovery... Mine was Dx in january 2009, Tx completed Jun2009..clean and clear since.

I actually was born in Mansfield, grew up in Mount Vernon, Ohio... Living in Central Florida now...

Sent you my email addy in answer to your email to me...

Anyways, keep us posted, try not to worry too much, I know that you and your father (as were mine), thought of cancer..pale, frail, no hair, people that eventually wither away and die... That's not the case at all...

As you can see from the responses, there are many of us that have and are surviving...(we are here...) and ummm watching you...

Also as mentioned, a lot of good mention concerning The James...

Best,

John

Hard12Find
Posts: 203
Joined: Sep 2012

Sorry you had to find us, but glad you did, this site is wonderful. I was diagnosed with stage 4a SCC HPV + with a primary tumor on my right tonsil, and spread to 3 lymph nodes toal on both sides of my neck, in August 2012. I had just turned 51. The good news is that this is a very treatable / beatable cancer, and it sounds like your Dad is otherwise healthy so he should be in good shape for the fight. I would encourage him to get on this site as well, as he will be welcomed, and we can all help with being there.....

I am now 4 months post treatment and have No Evidence of Disease (NED). if you have been reading this site you will see there were several new celebrations of NED, so that will be your dads goal....

Best wishes and prayers for your family....

Jim

HobbsDoggy
Posts: 165
Joined: Feb 2013

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.

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

be well taken care of at The James. November 2,2011 I had surgery, to remove my epiglottis, at The James. My surgery was done by my team of surgeons using the de vinci robot. Although, I have no experience with other large hospitals, I was well satisfied with my care.

One year and 5 months out, I am doing excellent, feeling great~~hopefully your Dad will join this board. The people on here are so kind and knowledgable..they will lift his spirits and help him through his journey.

KTeacher
Posts: 924
Joined: Jan 2011

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.

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Get you dad on this site.  We can give him support, advice, and he can see the successes we have here.  Try to get him support other than your being there.  You can't do it 24-7, but he is living it 24-7 and needs other outlets to get info, support and just to bi*ch.

 

Good luck to you and your dad,  this is beatable.  I am 3 years post treatment and 2 years NED.

Best
steve

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

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

 

 

mls351w
Posts: 88
Joined: Jul 2011

Nichole, read your entry and I was thinking how similiar my situation was. I was 53 years old, non smoker/drinker. Very fit. Had egg-sized lump on right side of neck. Diagnosed SSC base of tongue stage 4. I had 8 weeks of radiation, 2 chemo bouts and no tongue surgery. After treatment I had 5 lymph nodes removed. I am 7 years out. We visited our daughter at Texas Tech and told her the news. One of the hardest things I have ever had to do.

We did not want the news to affect her studies, but she is a very caring daughter and we knew it would weigh on her. I think your father would want you to concentrate on your Masters and would feel better knowing that he is not "hindering" you. Besides, you are with him in spirit every waking minute.

As far as the treatment, he is strong, healthy, and young. He will get through this ordeal. It is TOUGH, but it is not unbearable. Just stay on this site and do not read other internet listings. And please convince your dad not to visit other sites. I did before treatment and it was terrifying I did not discover this site until years after treatment. These people are the best. This is very treatable and has very high success rate. In my case, I recovered 100% with no after effects.

Take care and please keep us posted. You and your parent's heads will be spinning with all the stuff the doctors throw at you. But take it one day at a time. And get your Masters! Make you dad proud. That is the best thing you could do for him right now.

Mark S.

evanbe01
Posts: 1
Joined: Apr 2013

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

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

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

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hey Nicole Welcome to the family. First you have to Believe with all your heart your dad will come out the other end of the tunnel like Phrannie said. I am the cancer survivor, 12yrs NPC SCC(they didn't know about HPV then) stage 3, my caretaker was my mom and although I was 28 and newly married moved in with my mom and dad for all my treatment. The reverse for me and you, my dad had to work extra so my mom could quit to take care of me. He was then a truck driver, he didn't make to many things having to work, but every morning driving to rads without fail he called to say. I love you and when he would get home late late at night he came in and knelt next to my bed and talked to me for a bit. The littlest jestures of love are what matters Nicole. I had a friend that I couldn't see so she sent a care package of dollar store gifts 1 for everyday I had rads, when they were done and I came home I would open a present and it always gave me something to look forward to, something to forget for second the seriousness my life had become. Just a few ideas that aren't extragant but let them know you are there in spirit always.

You sound like such a sweet girl, hang in there honey, it will be hard at times but worth the rebirth of your Daddy when its all over!

God Bless and prayers for you and family and of course Dad,

Rachel

nnjohnson31's picture
nnjohnson31
Posts: 5
Joined: Apr 2013

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! Laughing

 

Nicole 

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

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

 

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