Husband newly diagnosed......so scared !

PipLily

Hello everyone! New to this forum and wanting to check in. My husband, 60, was just told on Thursday that the Cervical lymph Node biopsy he had done on Tuesday is positive for Squamous cell cancer. The general surgeon also said the pathologist noted it to be positive for HPV. I am beyond afraid right now....really in panic mode to be honest, although I’m trying to not let my husband see that at all. The unfortunate thing is that  I’m also a nurse, so I know too much about too little He woke up about a week and a half ago with a swollen lump on his neck; CT next day showed that node being abnormal with necrosis, and a smaller second one beside or behind it....can’t remember. Scheduled biopsy, and here we are. I’m already fifty step ahead in my mind, and am so afraid of so many things. What if it’s in his liver or lungs?

 I have literally spent hours and hours, day and night, googling EVERY possibility, until I stumbled upon this wonderful site, and now have spent countless hours reading here. I’m thinking this is going to be a Godsend in the months ahead. We have an initial consultation in Chicago/ Northwestern......anyone have experience with that? Their cancer center is #10 in nation, however, not necessarily ENT. Last night I looked in his mouth and he has a tiny white spot on his upper gumline,,,,,I wish I would’ve not looked, because now I’m thinking “what if it’s everywhere....tonsils, gums, etc “!?? I know this sounds like the rambling of a crazy woman....that’s how I feel! I’m not sure how Im going to eat or sleep before our appointment this next Friday with ENT. 

I know HPV Positive is better.....if the node was HPV Positive, I’m guessing the tumor would follow with that and be HPV Positive? I know we have so much information yet to gather....haven’t even found the primary, so too many unknowns, but seeing that white spot last night just freaked me out so much. Any words of wisdom you can give me would help. I know we’re in the infancy of a long journey, and am so encouraged by all of your stories. Thanks ever so much!

Elizabeth

wbcgaruss

Elizabeth You Are in A Good Place Here

The people here have gone through the same and similar things your husband has. And you will find great help here. The saying here is to stay away from google. Next is it's not cancer till they say it's cancer hence the white spot on your husband's gum may just be that-a white spot. It sounds like you are on a track of worst-case scenarios. I know how you must feel and it's not a good feeling. You have to calm down and start thinking positively such as his cancer could be early and easily removed. You do have a way to go yet. I know my experience with cancer involved me having soreness or problem and went to ENT and he might take a biopsy or send me for a CAT scan with dye and after that when cancer is verified get a PET scan to tell if it is anywhere else in the body. He will probably be in line for scans, tests, and biopsies. I'm sure you will get much help from others here but in the meantime calm down, think positive, take things step by step and depend on your medical team and don't get ahead of yourself. Prayer always helps too. Take Care-God Bless

Logan51

Elizabeth

We've all been where you and Hubby are, and it is the worst of times with worry about worst-case scenarios. This is 2020, Northwestern is a great C Center, we all survive the first C tx, HPV is easier to deal with, and he will be all right. Like Russ said, you have scans ahead for your C team to determine the tx regiment, which we hope you will share so we can help from our experiences, and then start the tx: Hubby steps in the ring with C and they duke it out with you in Hubby's corner, and the fight always ends with C on his back taking the 10-count, or being carted away on a stretcher. So, get the worst-case scenarios out of your mind: they ain't going to happen. Have Hubby be open with the Drs. on how he is physically doing, so the Drs. will know what they need to help. And don't be wary of any meds- they will help with stress, which helps the body in the fight. H&N is no walk in the park, but the odds are a couple months post-tx your Hubby will be happy and feeling good. So much progress has been made over the last 20 years w/H&N treatment, so no need to worry very much. Concern, of course, but we're all Survivors here, just like your Hubby will be.

motorcycleguy

Elizabeth

It's so hard, to keep the thoughts from flying, when you first find out. Please try to take your time, get the diagnosis, and deal with it as it comes. 

The people on here are survivors - and you will get much support from them!

Stay strong - you will get through this!

mg

PipLily

Thank you

Thank you to all of you that took the time and care to respond. Your words truly, truly did bring some calm and much comfort...because you all have been here! What a wonderful gift you give to remain on this forum to give first hand knowledge and advice to people just starting out. Thank you to the three of you for the reminder to not go down the path of “worst case scenarios “ either! I will keep you updated after our appointment this next Friday. Thank you for the calm voice in the stormy-ness right now!

motorcycleguy

PipLily said:

Thank you

Thank you to all of you that took the time and care to respond. Your words truly, truly did bring some calm and much comfort...because you all have been here! What a wonderful gift you give to remain on this forum to give first hand knowledge and advice to people just starting out. Thank you to the three of you for the reminder to not go down the path of “worst case scenarios “ either! I will keep you updated after our appointment this next Friday. Thank you for the calm voice in the stormy-ness right now!

Elizabeth,

I have a girlfriend, who was always the calming influence. It's what I needed, when my worries ran wild. 

I'm going to send a prayer for strength and wisdom (but you already strike me as a woman who has both!...)

mg

DarcyS

Hello from another caregiver

Elizabeth, I remember the way you are feeling very well.  My husband is now 7+ years out and life is good.  His diagnosis was T1M0N2b, basically stage 4 squamous cell carcinoma in his piriform sinus with metastasis to lymph nodes. We sought treatment at the University of Chicago and would highly recommend them. You have found a wonderful site for information, advice and support.  Try to stay positive and be sure to care for yourself as well. There is hope and many survivors here!

PipLily

motorcycleguy said:

Elizabeth,

I have a girlfriend, who was always the calming influence. It's what I needed, when my worries ran wild. 

I'm going to send a prayer for strength and wisdom (but you already strike me as a woman who has both!...)

mg

Thank you mg! 

Thank you mg! 

PipLily

DarcyS said:

Hello from another caregiver

Elizabeth, I remember the way you are feeling very well.  My husband is now 7+ years out and life is good.  His diagnosis was T1M0N2b, basically stage 4 squamous cell carcinoma in his piriform sinus with metastasis to lymph nodes. We sought treatment at the University of Chicago and would highly recommend them. You have found a wonderful site for information, advice and support.  Try to stay positive and be sure to care for yourself as well. There is hope and many survivors here!

Thanks so much for the

Thanks so much for the encouragement....truly appreciated! I’m feeling more calm this evening....I think my husband and I are just ready to get going on things, find out more specific information, and attack this head on with a plan. Waiting is so hard. So happy for you and your husband being 7 years out!!! That’s so wonderful! What made you choose U of C? Any experience with Northwestern? Thinking we will see how Friday goes, and maybe get a second opinion...

Take care!

PipLily

Logan51 said:

Elizabeth

We've all been where you and Hubby are, and it is the worst of times with worry about worst-case scenarios. This is 2020, Northwestern is a great C Center, we all survive the first C tx, HPV is easier to deal with, and he will be all right. Like Russ said, you have scans ahead for your C team to determine the tx regiment, which we hope you will share so we can help from our experiences, and then start the tx: Hubby steps in the ring with C and they duke it out with you in Hubby's corner, and the fight always ends with C on his back taking the 10-count, or being carted away on a stretcher. So, get the worst-case scenarios out of your mind: they ain't going to happen. Have Hubby be open with the Drs. on how he is physically doing, so the Drs. will know what they need to help. And don't be wary of any meds- they will help with stress, which helps the body in the fight. H&N is no walk in the park, but the odds are a couple months post-tx your Hubby will be happy and feeling good. So much progress has been made over the last 20 years w/H&N treatment, so no need to worry very much. Concern, of course, but we're all Survivors here, just like your Hubby will be.

Dave- thanks ever so much for

Dave- thanks ever so much for sharing your wisdom and experience! And I love the “fighter “ analogy! I will remember that, and share with my husband!

PipLily

wbcgaruss said:

Elizabeth You Are in A Good Place Here

The people here have gone through the same and similar things your husband has. And you will find great help here. The saying here is to stay away from google. Next is it's not cancer till they say it's cancer hence the white spot on your husband's gum may just be that-a white spot. It sounds like you are on a track of worst-case scenarios. I know how you must feel and it's not a good feeling. You have to calm down and start thinking positively such as his cancer could be early and easily removed. You do have a way to go yet. I know my experience with cancer involved me having soreness or problem and went to ENT and he might take a biopsy or send me for a CAT scan with dye and after that when cancer is verified get a PET scan to tell if it is anywhere else in the body. He will probably be in line for scans, tests, and biopsies. I'm sure you will get much help from others here but in the meantime calm down, think positive, take things step by step and depend on your medical team and don't get ahead of yourself. Prayer always helps too. Take Care-God Bless

Thanks for the caution

Thanks for the caution against “worst case scenarios “......I tend to do that, and it’s a great reminder that will not serve this situation very well....especially on behalf of my husband. Appreciate you responding!

God’s Blessings to you as well!

DarcyS

PipLily said:

Thanks so much for the

Thanks so much for the encouragement....truly appreciated! I’m feeling more calm this evening....I think my husband and I are just ready to get going on things, find out more specific information, and attack this head on with a plan. Waiting is so hard. So happy for you and your husband being 7 years out!!! That’s so wonderful! What made you choose U of C? Any experience with Northwestern? Thinking we will see how Friday goes, and maybe get a second opinion...

Take care!

University of Chicago

We spent two months struggling to get a diagnosis here in Michigan. We tried to get an appointment at U of M but had a huge issue with records being transfered and after two weeks of trying, looked on line for another option.  We did finally get an appointment with U of M but had an appointment with Chicago, too.  From the start we were so impressed with the Drs, procedures and how seamlessly they all worked together and had the same information.  The speed of the diagnosis and treatment plan also gave us hope.  The hospital had a high ranking, was a teaching hospital, and just really made us feel their competence and gave us a level of confidence we hadn't experienced here at home. Sorry, I don't have any information on Northwestern. Hope Friday goes well.  

SuzJ

Breathe

I can feel your panic in your posts, just breathe.

 

Do not Google, it is honestly the WORST thing to do.

As a medic, I understand where you are coming from, too little of not the right knowledge.

Once he starts, it'll be a rush of appointments, then a lul, and you'll be ready to scream with frustration - but that is what I was told, is time to rest, eat, enjoy. And thats what it is, he needs to rest up, eat everything he loves, in large quantities. Make the most of the "rest" weeks.

This - is the only place you should go for answers, because anywhere else, is a bit like falling down the rabbithole, and really scarey.

We've all been where you are, or know someone who took care of us and this board was amazing for answers.

But know this, You've got this! You've BOTH got this!

johnsonbl

Hard not to research...

I do it, even now, 3 years out.  I'm having what is likely a viral cough and even though I know it's unlikely my mind wanders to the worst.

Good news is that HPV+ is a "great" cancer to have, if you can say that.  The primary is likely in his tonsils or the base of his tongue.  They'll look for it there.  Likely it won't even show up on PET but they'll do that anyway for good measure.

Standard treatments are surgery/radiation or radiation/chemo or all 3 depending on stage.  If they don't find the primary you'll get radiation/chemo...and it works great.  If they find the primary you'll get to pick your treatment plan.

This board is great.  Lots of experience here.  Lots of long term survivors.  Lots of lives lost too soon.  But a great place to learn and bounce thoughts off of.  Sure your hubby will do fine.

Good luck,

Brandon

tbret

Set your jaw

Elizabeth,

There isn't much to add to what has already been said.  I just want to repeat that after all the preliminary stuff is done and before treatments start - tell him to EAT.  After the treatments start, tell him to EAT.  If it gets to the point that he can't eat (not everyone does; he could be a lucky one) then get him to drink a lot of something (Ensure / Glucerna / whatever else there is) 

I wish I had been more proactive and had more aggressively exercized and eaten.

Calories are our friends.

Give us a first name so those of us who are praying sorts can remember him.

 

 

motorcycleguy

tbret said:

Set your jaw

Elizabeth,

There isn't much to add to what has already been said.  I just want to repeat that after all the preliminary stuff is done and before treatments start - tell him to EAT.  After the treatments start, tell him to EAT.  If it gets to the point that he can't eat (not everyone does; he could be a lucky one) then get him to drink a lot of something (Ensure / Glucerna / whatever else there is) 

I wish I had been more proactive and had more aggressively exercized and eaten.

Calories are our friends.

Give us a first name so those of us who are praying sorts can remember him.

 

 

tbret

is so right about this. It's almost impossible to describe what eating is like, when your taste and swallowing abilities are compromised (for a while).

This is not a time to worry about weight. He should be eating ALL of his favorites - and LOTS of it!!

I hope you're holding up OK, Elizabeth! Prayers coming!.....

mg

wbcgaruss

I Would Like To Chime In

About the eating part. Absolutely eat all you can, all you want, and all your favorites as much as you can. It is quite possible as your hubby gets going in treatment there will be difficulties in eating as with H & N there usually are. But even before eating difficulties there is a time after they start chemo and rads when you can still eat but everything is just tasteless like cardboard. Then there is no enjoyment in eating you are forcing food down as a necessity. So eat on as you can and enjoy and afterword you will recover and be back to your old self or at least a new normal-Take Care-God Bless

Sabrina23

wbcgaruss said:

I Would Like To Chime In

About the eating part. Absolutely eat all you can, all you want, and all your favorites as much as you can. It is quite possible as your hubby gets going in treatment there will be difficulties in eating as with H & N there usually are. But even before eating difficulties there is a time after they start chemo and rads when you can still eat but everything is just tasteless like cardboard. Then there is no enjoyment in eating you are forcing food down as a necessity. So eat on as you can and enjoy and afterword you will recover and be back to your old self or at least a new normal-Take Care-God Bless

yes Russ is right on point

Yes, WBCgaruss is right on point.  Eating is critical put on as many calories as you can - you can also order off of Amazon Bosst VHC very high calorie for additional calorie intake during treatments.  Our prayers and thoughts are with you for all to be well and miracles do happen!  God Bless and Keep us posted.  Everyone on this board has such good information to share we are so blessed to have all these people in our lives caring about us.  I too was a first timer back in June of last year and found this forum and it was a God Send has been ever since.  The support is so wonderful that you get on here. 

Hugs, Sabrina 

PipLily

SuzJ said:

Breathe

I can feel your panic in your posts, just breathe.

 

Do not Google, it is honestly the WORST thing to do.

As a medic, I understand where you are coming from, too little of not the right knowledge.

Once he starts, it'll be a rush of appointments, then a lul, and you'll be ready to scream with frustration - but that is what I was told, is time to rest, eat, enjoy. And thats what it is, he needs to rest up, eat everything he loves, in large quantities. Make the most of the "rest" weeks.

This - is the only place you should go for answers, because anywhere else, is a bit like falling down the rabbithole, and really scarey.

We've all been where you are, or know someone who took care of us and this board was amazing for answers.

But know this, You've got this! You've BOTH got this!

Trying to breathe.....glad

Trying to breathe.....glad our appointment is tomorrow! I definitely fell down the rabbit hole of ”researching “ this past weekend, but after all the cautions on this for to not do so, glad I heeded the advice. Thanks so much for the encouragement!!!

PipLily

johnsonbl said:

Hard not to research...

I do it, even now, 3 years out.  I'm having what is likely a viral cough and even though I know it's unlikely my mind wanders to the worst.

Good news is that HPV+ is a "great" cancer to have, if you can say that.  The primary is likely in his tonsils or the base of his tongue.  They'll look for it there.  Likely it won't even show up on PET but they'll do that anyway for good measure.

Standard treatments are surgery/radiation or radiation/chemo or all 3 depending on stage.  If they don't find the primary you'll get radiation/chemo...and it works great.  If they find the primary you'll get to pick your treatment plan.

This board is great.  Lots of experience here.  Lots of long term survivors.  Lots of lives lost too soon.  But a great place to learn and bounce thoughts off of.  Sure your hubby will do fine.

Good luck,

Brandon

Thank you Brandon......I read

Thank you Brandon......I read and re-read your post many times, as the comment about HPV+ was encouraging And right now I’m clinging to anything to get to tomorrow’s appointment. Thanks ever so much for replying!

PipLily

tbret said:

Set your jaw

Elizabeth,

There isn't much to add to what has already been said.  I just want to repeat that after all the preliminary stuff is done and before treatments start - tell him to EAT.  After the treatments start, tell him to EAT.  If it gets to the point that he can't eat (not everyone does; he could be a lucky one) then get him to drink a lot of something (Ensure / Glucerna / whatever else there is) 

I wish I had been more proactive and had more aggressively exercized and eaten.

Calories are our friends.

Give us a first name so those of us who are praying sorts can remember him.

 

 

Thank you for the advice!

Thank you for the advice! Will definitely follow it! My husband’s name (31 years of marriage!) is Stacy........grateful for your prayers. My faith feels weak right now, but I am trusting God to carry my husband through this.