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Caregiver to newly diagnosed Stage IV base of the tongue cancer

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I just want to say how thankful there is a site that I can go to to be around people who understand what my husband and I are going through. I married my husband in May of this year and he had what appeared to be a cleft cyst on the right side of his neck. He had a needle biopsy in October 2009 that came back inconclusive and he had no insurance at the time so chose to do nothing about it. When I met him I was concerned by the large lymph node he had every day and once I got him on my insurance I had him complete a full workup including having the mass removed from his neck. The ENT told us that it really was just something cosmetic because if it were cancer he would be dead by now. I said I wanted it out and so my husband sided with me and he had it removed July 26, 2012. Can you imagine my surprise when then ENT came to the consultation room and told me that my husband had a lymph node the size of an orange removed from his neck and it was deemed cancerous. I was in shock. Since that time we have been looking for the primary tumor. Finally after numerous biopsies last Tuesday, the found the primary tumor at the base of my husbands tongue. He will have that surgically removed on September 13 and then after 4-6 will start concomitant chemoradiation therapy. Our doctor is acquiring a second opinion as to whether to perform a neck dissection as it appears the secondary tumor had spread into my husbands neck. My husband is just now accepting that he has cancer and I am coming to grips that we most likely will not have any children now as we are both now in our 40's and waiting two years following chemotherapy will make it very difficult to conceive. I have been quietly reading the forums since the initial mass was removed, but this is my first post. I don't know what to expect and I have to say I am a little afraid.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

But you are in the right place. You will find the support you need here. I was too a caregiver and this sight was so helpful to me during our cancer battle. Good luck to you and your husband and ask lots of questions. I am sure someone on this sight can always help. Donna

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Thank you so much. I am so tired of everyone in church and work minimizing what is going on and telling me it will be ok. Yes I expect my husband to live, but all that we are going to endure (him especially) is not ok. I find myself ok sometimes and others I just want to yell or cry. No one around me seems to understand what this is like and it is nice to find a place where I can come ask questions, whine occasionally or just read about other people's journey.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

No one understands how scary it is. I do. I was married just two months before my husband was diagnosed. So it was terrifying to me. He had tonsil cancer, stage IV. He did not have any surgery. I did keep a blog during our battle. You are welcome to read it.

summharleygolfer.blogspot.com

Hang in there girl. It may be a rough ride, but you will make it.

Donna

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I will definitely read your blog. It sounds as though we have a lot in common. I appreciate your support and encouragement.

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

You're so wellcome to this forum where you will get all the support you need. It helps me to go thru the same ordeal with my father.
Your story is similar to ours. My dad (57 years) had swollen lymph node on the left side of his neck - golf ball size for a year! He also had a sore throat so doctors blamed it to acid reflux. He actually had ultrasound check on July 2011 of that swollen lymph node but it seemed clear, nothing suspicious. ENT just said that he should observe it and if anything changes he should come back. But nothing changed, the node remained swollen... And that was it.
My mom and I were very concerned about it...But still... Almost a year has past and he saw his ENT again... Another ultrasound of the neck. And of course our biggest fears had come true. Further examinations showed that his primary was in the tongue. Final diagnosis T2N2bM0 (Oropharyngeal cancer).
The lymph node was too big and too close to the artery so operation was no option. He got 35 radiations and concurrent chemotherapy with Cisplatin (weekly).

Right now he has 11 more rads to go and 1 or 2 chemos. Side effects are hard but all is worth it as long as the desease goes away forever.

So, I told you our story just to let you know that you're not alone and we all understand what you're going thru. Just stay with this board and you will get all info you need. Here are some wonderful people who will encourage you and your husband to stay positive and ready to fight! We all can do it! Medicine has improved so much and outcomes of H/N cancers are sooooooo much better than in the past!

God bless you both and let us fight and win together!

Vanessa

hwt's picture
hwt
Posts: 1854
Joined: Jun 2012

There are some very special caregivers here and each of you is so important. Sorry you have to make this journey and wishes for the best. I had surgery (cancer of lower jaw) in January and finished radiation & chemo mid-May. Since, I've had one CAT scan w/contrast that came back "NED" no evidence of disease. The days of chemo & rads were harder for me than the surgery. Nutrition and hydration throughout are keys to success. Prior to surgery, I suggest your husband enjoy all of his favorite meals. Cross each bridge as you come to it. Yes, there are lots of side effects but everyone doesn't get every side effect and they come in varying degrees. Someone here will always help you through things when they come up.

Candi

ditto1
Posts: 630
Joined: Mar 2012

sorry as well you had to find this site, but agree with my friends its a great site for all the information you will need to get thru this journey. You should visit the Super Thread which is posted now on the 1st page of HN its full of good information. We will all help direct you and your husband on what you might expect although the ongoing theme is everyone will not have the same side effects or handle them the same. I had Base of Tongue lymphnodes involved, found in March. Finished treatment 33 RADS and 11 Chemos a few weeks ago. Tired, but doing pretty well. Yes you and your husband will make it, but all do respect to our friends and church folks it will not be easy but doable and it sounds like your husband is in good hands with you by his side.

tommyodavey's picture
tommyodavey
Posts: 353
Joined: Nov 2011

Welcome to the forum. Here you will find lots of support and maybe an answer or two for your questions. It is a great place for information too.

His possible neck dissection will of course be decided by his doctors. There are a couple of ways to treat the infected area and they'll know best which way to go. One is just radiation to wipe out all the bad cells. With me, I had a neck dissection and radiation to make sure it was all out. There is very little pain with the neck surgery, just some after effects to deal with if they disturb a nerve or two like they did with me. But still it isn't too bad at all so don't be too concerned if they want to do it.

He is very lucky to have you in his life. And I am sorry you have to deal with this so early in your marriage.

Tommy

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

Hi Vivian

"Not having any children" is NOT a foregone conclusion here. Please don't give up hope on that.

If you think you may want children in future, it is NOT to late to have your husband make a donation to a sperm bank in advance of a future need. Also, discuss the issue of children with your husbands doctors. Not all cancer treatments will cause permanent infertility and not all cancer treatments will require a wait of two years following end of treatment.

Deb

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

VivianLee5689,

Nice to meet (and welcome) you and your husband aboard our bus. Keep your eyes and ears open because you are going to hear and learn a lot of stuff. Don’t panic or beat yourself up, like all of us; no body deserves this c_ _ p. It won’t be much fun, but you’ll live through it (I did). So, rest up, go out to dinner and enjoy yourself. If you have any questions, just ask.

Best,

Matt

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

So sorry you have the need to be hear but welcome. I too am a cargiver. My husband had stage four base of tongue with two lymph involved. I would not have survived without the wonderful people on this site. They were always able to offer comfort, support, encouragemment, prayers and answered so many questions.

So welcome and know I am praying for you both.

Debbie

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

to hang your hat, and rest your worried mind. This forum is FILLeD with love, caring...incredible amounts of knowledge....and how to's to get thru the daily routines once treatment gets started. I'm just saying you have found the best place in the world to ask all your questions, and know they will be answered.

Treatment if hard....but so so doable....he will get thru it, and come out the other side, and new man...

p

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Of all the forums I have been browsing over the last month I could tell you all really care about each other. That is the kind of group I want to be a part of. I think we are all much better off when we have people pulling for us and supporting us. I am so appreciative. No offense I wish I didn't have to be here, but I am so glad that I found this forum.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

No offense taken...we wish you didn't have to be here as well.

But as you have already mentioned, this forum seems to be one of the best out there for people that get it, and people that truely care about helping each other.

It's totally understandable to be concerned, scared and afraid.

But realize that cancer these days for the most part can have very successful outcomes with the many forums of treatments offered. There are many survivors here that have been around for several years post treatment...some for 10 - 15+...

Myself, I was STGIII Tonsils HPV+ and a lymphnode thrown into the mix for good measure I guess.

That was over 3+ years ago, and after my regime' of chemo and rads, I have been clean and clear since June 2009.

Hoping for the very best out come for your hubby, as well as the many here.

Best,
John

VickiSam's picture
VickiSam
Posts: 8229
Joined: Aug 2009

My heart, and soul go to you and your hubby. Please know that this CSN board
is the best that is out there, and the folks here -- truly care about YOU, and
your situation.

How do I know this??? I had the PLEASURE of meeting both Skiffin16 and Soccerfreak
during my travels, I witnessed first hand the tears in their eyes, and felt the love in their hearts when they spoke about this site and everyone here.

You found the right place .. We are here for you, 24 hours a day, 7 days a
week. You will not find a better educated, supportive and loving bunch of
Warriors!

Strength, Courage and HOPE for a Cure.

A breast cancer Survivor --

Vicki Sam

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