Caregiver to newly diagnosed Stage IV base of the tongue cancer
Comments
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So sorry
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. Donna0 -
Thankscarolinagirl67 said:So sorry
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
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.0 -
you are so rightVivianLee5689 said:Thanks
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.
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.
Donna0 -
Will definitely readcarolinagirl67 said:you are so right
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
I will definitely read your blog. It sounds as though we have a lot in common. I appreciate your support and encouragement.0 -
Similar diagnosiscarolinagirl67 said:you are so right
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
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!
Vanessa0 -
CaregiversVanessaSLO said:Similar diagnosis
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
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.
Candi0 -
Welcomehwt said:Caregivers
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
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.0 -
Children...
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.
Deb0 -
Neck Dissectionditto1 said:Welcome
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.
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.
Tommy0 -
we were all afraid at one time
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,
Matt0 -
So sorry you have the need
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.
Debbie0 -
You have found the perfect place
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...
p0 -
Thanks to allphrannie51 said:You have found the perfect place
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
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.0 -
Vivian...
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,
John0 -
Vivian ...Skiffin16 said:Vivian...
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
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 Sam0
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