Husband newly diagnosed

longbranchajn

My husband was just diagnosed with throat cancer.In the lymph nodes, base of tongue and throat near vocal cords.The Dr said that it is too extensive for surgery so that's off the table. The Dr is going to meet with tumor board to see if they will go for curative or palatative care.Does he have hope? What does all of this mean?

DarcyS

There is always hope

So sorry to hear you are here, but welcome! This is a wonderful site filled with people who have and are experiencing what you are.  My husband was diagnosed 7 years ago with stage 4 cancer of the piriform sinus with 2 lymph nodes affected as well.  He did not have surgery but did have extensive chemotherapy and radiation.  7 years later, no cancer, minimal side effects and life is good.  When I/we were where you are now, I couldn't imagine life now.  I, too, felt there was no hope.  I don't know where you live or where you are seeking treatment, but I highly recommend a second opinion.  A teaching hospital with a tumor board, I feel, offers the best care and results.  We live in Michigan and got a second opinion at UofM and  a 3rd opinion at UofC and choose treatment at UofC.  Hang in there, I know these days of uncertainty are hard.  You are not alone.  There are many here who can support, offer advice and be there for you.

longbranchajn

DarcyS said:

There is always hope

So sorry to hear you are here, but welcome! This is a wonderful site filled with people who have and are experiencing what you are.  My husband was diagnosed 7 years ago with stage 4 cancer of the piriform sinus with 2 lymph nodes affected as well.  He did not have surgery but did have extensive chemotherapy and radiation.  7 years later, no cancer, minimal side effects and life is good.  When I/we were where you are now, I couldn't imagine life now.  I, too, felt there was no hope.  I don't know where you live or where you are seeking treatment, but I highly recommend a second opinion.  A teaching hospital with a tumor board, I feel, offers the best care and results.  We live in Michigan and got a second opinion at UofM and  a 3rd opinion at UofC and choose treatment at UofC.  Hang in there, I know these days of uncertainty are hard.  You are not alone.  There are many here who can support, offer advice and be there for you.

Thank you DarcyS, I live in

Thank you DarcyS, I live in Florida and he is going to University of Fl which has a tumor board

yensid683

Yes, there is always hope..

I was diagnosed in March of 2012 with stage IV-a base of tongue cancer.  The primary tumor was on the left base of my tongue and measured 30mm, the largest of the sentinel nodes measured 60 mm and it had extended into the left wall of my throat.  Like your husband they said that surgery was not an option but did start me on a three phase treatment program

Phase 1 was induction chemo, scheduled as three sessions, each session to be 5 days as an inpatient on continuous high dose chemo and then two weeks to recover.  Very challenging experience, if your husband's team opts for this, make sure that he drinks a lot of fluids while receiving chemo. I didn't and it impacted my kidney function such that they couldn't/wouldn't do the next two sessions. though that first session did radically shrink the lymph nodes!

Phase 2 was concurrent chemo and radiation, 8 weekly doses of a different medication and daily radiation treatments.  Not hard to do, no real side effects from the chemo but a killer sore throat!

Phase 3 was surgery, a selective neck dissection to remove any remaining issues.  Some "weak, inactive disease" was found in the lymph nodes that were removed.

Here I am, 7 years later (my last radiation treatament was July 5) and I am clear.  there are some long term side effects to deal with as a consequence of the treeatments, and while they're challenging, I'm still here, I get to enjoy the Florida sunshine, be with m family and lose golf balls on the golf course.

a diagnosis of cancer in a spouse is probably one of the scariest things you can get, I often thought that my diagnosis, treatment and recovery was harder on my wife than it was on me.

Holding good thoughts for you and your husband!

rrmartins71

Prognosis

hi there. Did the doctors say anything about p16 positive or negative? This is a key marker in this type of cancer. P16 means it was caused by HPV, and prognostics are very different (much better) than the ones from traditional tobacco/alcohol cancer.

longbranchajn

CivilMatt said:

we like CURED, we also like NED very much!

longbranchajn.

Welcome to the H&N forum, I am sorry to see you  here, but here you are and life really can be a B _ _ _ H!!! I mean that, in the best way I can. I am not the smartest person on this forum, nor the dumbest, but I believe you are giving me two conflicting (or opposite) prognosis(s) for your husband. And my advice and answers to each would be different.  Have you gotten any further (better and more complete) information from your husband’s doctor(s), on his ultimate condition. A thumbs up from the doctor would be good.

Yes, there is always room for hope. There has to be. There are probably H&N members reading you statement right now, who once stood where you are now and are currently doing fine.  Good example DarcyS and yensid683,

Note:    "Doing fine" can be a “new-normal” post treatment and not at all like your old normal. My "doing fine" shares very little with pre-cancer Matt.  I miss him, but  the old-Matt did have cancer and the now-Matt does not.  Big difference!

 I, for one, will vote to cure your husband of all this cancer stuff you are going through right now.  And you can both be satisfied knowinng that  you have done the best job of making difficult choices.

Best of luck,

Matt

 

The Dr would not give much

The Dr would not give much info until the results come back from his biopsy about what strain of cancer

CivilMatt

we like CURED, we also like NED very much!

longbranchajn.

Welcome to the H&N forum, I am sorry to see you  here, but here you are and life really can be a B _ _ _ H!!! I mean that, in the best way I can. I am not the smartest person on this forum, nor the dumbest, but I believe you are giving me two conflicting (or opposite) prognosis(s) for your husband. And my advice and answers to each would be different.  Have you gotten any further (better and more complete) information from your husband’s doctor(s), on his ultimate condition. A thumbs up from the doctor would be good.

Yes, there is always room for hope. There has to be. There are probably H&N members reading you statement right now, who once stood where you are now and are currently doing fine.  Good example DarcyS and yensid683,

Note:    "Doing fine" can be a “new-normal” post treatment and not at all like your old normal. My "doing fine" shares very little with pre-cancer Matt.  I miss him, but  the old-Matt did have cancer and the now-Matt does not.  Big difference!

 I, for one, will vote to cure your husband of all this cancer stuff you are going through right now.  And you can both be satisfied knowinng that  you have done the best job of making difficult choices.

Best of luck,

Matt

 

ryeates1

yensid683 said:

Yes, there is always hope..

I was diagnosed in March of 2012 with stage IV-a base of tongue cancer.  The primary tumor was on the left base of my tongue and measured 30mm, the largest of the sentinel nodes measured 60 mm and it had extended into the left wall of my throat.  Like your husband they said that surgery was not an option but did start me on a three phase treatment program

Phase 1 was induction chemo, scheduled as three sessions, each session to be 5 days as an inpatient on continuous high dose chemo and then two weeks to recover.  Very challenging experience, if your husband's team opts for this, make sure that he drinks a lot of fluids while receiving chemo. I didn't and it impacted my kidney function such that they couldn't/wouldn't do the next two sessions. though that first session did radically shrink the lymph nodes!

Phase 2 was concurrent chemo and radiation, 8 weekly doses of a different medication and daily radiation treatments.  Not hard to do, no real side effects from the chemo but a killer sore throat!

Phase 3 was surgery, a selective neck dissection to remove any remaining issues.  Some "weak, inactive disease" was found in the lymph nodes that were removed.

Here I am, 7 years later (my last radiation treatament was July 5) and I am clear.  there are some long term side effects to deal with as a consequence of the treeatments, and while they're challenging, I'm still here, I get to enjoy the Florida sunshine, be with m family and lose golf balls on the golf course.

a diagnosis of cancer in a spouse is probably one of the scariest things you can get, I often thought that my diagnosis, treatment and recovery was harder on my wife than it was on me.

Holding good thoughts for you and your husband!

wow, i thought i was reading about myself. i am recently diagnosed with head and neck, was told last week it was terminal. i want to get a second opinion. is that done by the doc i have now or do i do all the research and find out on my own. 

i was giving a few months survival up to a year ( one year if treatement)

there are so many other options and it is a little daunting, i am just trying to weed thru it all

wbcgaruss

ryeates1 said:

wow, i thought i was reading about myself. i am recently diagnosed with head and neck, was told last week it was terminal. i want to get a second opinion. is that done by the doc i have now or do i do all the research and find out on my own. 

i was giving a few months survival up to a year ( one year if treatement)

there are so many other options and it is a little daunting, i am just trying to weed thru it all

Definitely Second Opinion ryeates1

These days there are many options for cancer treatment. You definitely should at least get a second opinion to see if they agree or are different. I don't know if you are close to one but quite a few folks on here have said go to a teaching hospital if you can. God Bless

big G

wbcgaruss said:

Definitely Second Opinion ryeates1

These days there are many options for cancer treatment. You definitely should at least get a second opinion to see if they agree or are different. I don't know if you are close to one but quite a few folks on here have said go to a teaching hospital if you can. God Bless

Second opinion

Definately agree with Russ on the second opinion ryeates1. If possible seek out an NCI accredited treatment center or teaching hospitals. These will maybe give you more options. NGU

JustKate63

rrmartins71 said:

Prognosis

hi there. Did the doctors say anything about p16 positive or negative? This is a key marker in this type of cancer. P16 means it was caused by HPV, and prognostics are very different (much better) than the ones from traditional tobacco/alcohol cancer.

P16 prognosis

My husband was diagnosed November 2018 with this also in the throat, base of toungue and lymph nodes. As of April this year, after aggressive treatment and surgery it mestasticized in his pelvis, scattered all about and on both hips. He has been given up to a year. We are in Texas and go to MDAnderson, they too said this was the easiest of all cancers to beat. He did beat it in the neck- it is gone there. We didn’t expect- nor did the doctors - for this to happen. 

dnelson964

treatment

If treatment of radiation and chemo is recommended ask if you can get first Half radiation followed by second half Proton. Proton is much less painful and has least over shoot into normal healthy tissues. I did my treatment this way and had much less problems eating/drinking afterward them most. Also recommend to check the vitamin D3 level on blood testing. You want to get it up to 70-90 ( normal range is 30-90) to help the immune system kill cancer cells.