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

PipLily

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

Am putting all this first

Am putting all this first hand advice in my back pocket Thank you!

PipLily

Sabrina23 said:

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 

Thank you Sabrina! And will

Thank you Sabrina! And will definitely keep you posted!

PipLily

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

Thank you!

Thank you!

PipLily

Appointment tomorrow

My husband’s first  appointment is tomorrow at 0900 with the ENT. My husband is actually looking forward to the appointment, so he can see what information we get, and what the next step is. I admire him so much for that. Me, just trying to not be 50 steps down the road that I’ve “made up “ in my mind And trying very hard to just trust God throughout the process. Thanks for everyone’s kind words, advice, prayers, and posts. I will be sure to check in as to how our appointment went....again, thanks so much for everything. The support and knowledge this week has been such a comfort this long week. 

Elizabeth

PipLily

Appointment

hello.....had our appointment with the ENT surgeon Friday. He’s actually the chair of the ENT Department. I’m not sure what I expected......going to a major cancer treatment center, I thought we would meet with a whole team of people Apparently I’m not clear on how this works!!! He did an in office scope, nothing majorly seen, apparently. Set my husband up for CT chest and PET this week, then we have a follow up the following week. They are going to get whatever samples they can from the lymph node removal that was done at our local hospital, and do further testing on it. Pathology showed P16, but I guess HPV wasn’t ran. So they will do that. I guess most HPV tumors show over expression of P16, but they are making sure. He felt that this was a pretty ”typical “ case for HPV presentation........and expects we will find the primary in tonsillar or tongue region. He said this is highly treatable....used the word “ curable “...... spoke of the success rate over the last 10 years at Northwestern. Explained the options of no surgery/ chemo, Rad versus Surgery, chemo, Rad. He recommends all three. Sounds like all the biopsies of the tonsil, lymphs are done intra- operatively???? Then removal of tumor and lymphs at the same time??? I feel confused because I thought we did biopsies prior, to find the primary, then decide on a course of action??? He said we will talk more at the next visit after scans.

 I guess I feel confused, and I’m a nurse!! It’s an overwhelming process for patients! My confusion is how he could be so confident of the treatability of my husband’s situation, when we don’t even know stage, Primary site, etc?? I want so much to hold onto his words, and he’s done over 8000 Head and neck surgeries, but I also don’t want to make decisions based on inaccurate hope or information. I probably sound like Eeyore, I just want my husband and I to be able  to make informed decisions. 

Also, when do you end up meeting other physicians involved in the care, like Oncology, Rad Oncology, therapists etc?

Thank you to everyone for your patience......

Elizabeth

big G

PipLily said:

Appointment

hello.....had our appointment with the ENT surgeon Friday. He’s actually the chair of the ENT Department. I’m not sure what I expected......going to a major cancer treatment center, I thought we would meet with a whole team of people Apparently I’m not clear on how this works!!! He did an in office scope, nothing majorly seen, apparently. Set my husband up for CT chest and PET this week, then we have a follow up the following week. They are going to get whatever samples they can from the lymph node removal that was done at our local hospital, and do further testing on it. Pathology showed P16, but I guess HPV wasn’t ran. So they will do that. I guess most HPV tumors show over expression of P16, but they are making sure. He felt that this was a pretty ”typical “ case for HPV presentation........and expects we will find the primary in tonsillar or tongue region. He said this is highly treatable....used the word “ curable “...... spoke of the success rate over the last 10 years at Northwestern. Explained the options of no surgery/ chemo, Rad versus Surgery, chemo, Rad. He recommends all three. Sounds like all the biopsies of the tonsil, lymphs are done intra- operatively???? Then removal of tumor and lymphs at the same time??? I feel confused because I thought we did biopsies prior, to find the primary, then decide on a course of action??? He said we will talk more at the next visit after scans.

 I guess I feel confused, and I’m a nurse!! It’s an overwhelming process for patients! My confusion is how he could be so confident of the treatability of my husband’s situation, when we don’t even know stage, Primary site, etc?? I want so much to hold onto his words, and he’s done over 8000 Head and neck surgeries, but I also don’t want to make decisions based on inaccurate hope or information. I probably sound like Eeyore, I just want my husband and I to be able  to make informed decisions. 

Also, when do you end up meeting other physicians involved in the care, like Oncology, Rad Oncology, therapists etc?

Thank you to everyone for your patience......

Elizabeth

Appointment

PipLily, sounds like your in good hands with the facility,surgeons,etc. First take a deep breath, take it day by day, trust in the lord, trust in your medical team for they have the experience you need and deserve. The scans are normal follow up and the node paths will help them form the best treatment plan for your husband. Then you will be informed of their recommendation. You will get through this as many of us have. Prayers your way.

motorcycleguy

PipLily said:

Appointment

hello.....had our appointment with the ENT surgeon Friday. He’s actually the chair of the ENT Department. I’m not sure what I expected......going to a major cancer treatment center, I thought we would meet with a whole team of people Apparently I’m not clear on how this works!!! He did an in office scope, nothing majorly seen, apparently. Set my husband up for CT chest and PET this week, then we have a follow up the following week. They are going to get whatever samples they can from the lymph node removal that was done at our local hospital, and do further testing on it. Pathology showed P16, but I guess HPV wasn’t ran. So they will do that. I guess most HPV tumors show over expression of P16, but they are making sure. He felt that this was a pretty ”typical “ case for HPV presentation........and expects we will find the primary in tonsillar or tongue region. He said this is highly treatable....used the word “ curable “...... spoke of the success rate over the last 10 years at Northwestern. Explained the options of no surgery/ chemo, Rad versus Surgery, chemo, Rad. He recommends all three. Sounds like all the biopsies of the tonsil, lymphs are done intra- operatively???? Then removal of tumor and lymphs at the same time??? I feel confused because I thought we did biopsies prior, to find the primary, then decide on a course of action??? He said we will talk more at the next visit after scans.

 I guess I feel confused, and I’m a nurse!! It’s an overwhelming process for patients! My confusion is how he could be so confident of the treatability of my husband’s situation, when we don’t even know stage, Primary site, etc?? I want so much to hold onto his words, and he’s done over 8000 Head and neck surgeries, but I also don’t want to make decisions based on inaccurate hope or information. I probably sound like Eeyore, I just want my husband and I to be able  to make informed decisions. 

Also, when do you end up meeting other physicians involved in the care, like Oncology, Rad Oncology, therapists etc?

Thank you to everyone for your patience......

Elizabeth

Elizabeth,

It's such a scary process, when you don't know. They will send samples to the lab, for biopsy. When the results come back, they will recommend a program (f needed) - that meets a standard set by a Cancer Board. This may involve a combination of radiation and chemo.

The success rate on this treatment is very good, and getting betteer all the time!

I know it's tough, but it gets easier, when you get the answers. Soon, you will be on here, coaching others to stay calm, and letting them know what to expect!

Hang in there - you'll get through this!

Curt

Clon

You will get through this

Elizabeth,

I was diagnosed in March 2016.  I had HPV related tumors in the lymph nodes on the right side of my neck.  It took three biopsies to confirm it was in fact HPV 16 because they kept missing the diseased part of the lymph node. Additional biopsies and scans did not find the primary source so I was treated bilaterally with radiation and had seven weeks of chemo.  I did not have surgery because the chemo/rad combination worked well.

The appointments were scary and I was given more information than I could take in. My wife made a notebook that we brough to each appointment.  We would write down our questions before we went, and keep any papers, tests or information they gave us all in one place.

What you are going through is overwhelming and scary, but it is curable.  As your appoinments keep coming and you progress through your treatments stay active on this forum. You will have a lot of questions about food, hydration, side effects, sleep, and other things that come up during treatment.  All of us here have experienced these and can give you first hand advice.  What works for one may not work for another, but something you garnish will work for you.

I am 58 years old, still working full time and just ran my first half-marathon.  There is live after treatment, and I think you will find you appreciate it more when you are done.  I am praying for you as you start working towards your husbands cure.

Charlie

DarcyS

Path forward

We met all three members of my husband's care team during our first visit. We saw the ent, hemotologist and radiation Dr.  Not sure if all hospitals follow the same routine.  The tumor board met and discussed the treatment.  Surgery was not recommended but kept as plan b if chemo and radiation did not take care of the cancer.  Thankfully, the chemo and rads did their work!  Don't be afraid to ask questions.  Be sure to bring a notebook and write down what was discussed at your appointments.  II remember being very overwhelmed and forgetting what was said and the notes were so nice to refer back to.  The pet scan should be helpful in finding the primary and should also help with the staging.  My husband was not hpv positive so I don't know about the other procedures.  Hang in there as you work with your doctors to find the path forward.

 

PipLily

Clon said:

You will get through this

Elizabeth,

I was diagnosed in March 2016.  I had HPV related tumors in the lymph nodes on the right side of my neck.  It took three biopsies to confirm it was in fact HPV 16 because they kept missing the diseased part of the lymph node. Additional biopsies and scans did not find the primary source so I was treated bilaterally with radiation and had seven weeks of chemo.  I did not have surgery because the chemo/rad combination worked well.

The appointments were scary and I was given more information than I could take in. My wife made a notebook that we brough to each appointment.  We would write down our questions before we went, and keep any papers, tests or information they gave us all in one place.

What you are going through is overwhelming and scary, but it is curable.  As your appoinments keep coming and you progress through your treatments stay active on this forum. You will have a lot of questions about food, hydration, side effects, sleep, and other things that come up during treatment.  All of us here have experienced these and can give you first hand advice.  What works for one may not work for another, but something you garnish will work for you.

I am 58 years old, still working full time and just ran my first half-marathon.  There is live after treatment, and I think you will find you appreciate it more when you are done.  I am praying for you as you start working towards your husbands cure.

Charlie

Thank you!

Charlie.....thank you so much for the encouragement! These posts like yours, and others I received, have given so much comfort. My husband is letting me be the internet guru right now, but I showed him your post, and it pushes the two of us to move forward with a positive outlook, and hope, in regards to recovery!!! Congratulations on your half marathon!! That’s awesome! I’m a “wanna be “ runner......do about three miles, but once I hit three, I mentally check out and can’t go any farther I definitely plan on using this forum as a major source of information to help my husband get through these next few months. Preliminary PET Scan is tomorrow.             Thank you again!!

johnsonbl

PipLily said:

Appointment

hello.....had our appointment with the ENT surgeon Friday. He’s actually the chair of the ENT Department. I’m not sure what I expected......going to a major cancer treatment center, I thought we would meet with a whole team of people Apparently I’m not clear on how this works!!! He did an in office scope, nothing majorly seen, apparently. Set my husband up for CT chest and PET this week, then we have a follow up the following week. They are going to get whatever samples they can from the lymph node removal that was done at our local hospital, and do further testing on it. Pathology showed P16, but I guess HPV wasn’t ran. So they will do that. I guess most HPV tumors show over expression of P16, but they are making sure. He felt that this was a pretty ”typical “ case for HPV presentation........and expects we will find the primary in tonsillar or tongue region. He said this is highly treatable....used the word “ curable “...... spoke of the success rate over the last 10 years at Northwestern. Explained the options of no surgery/ chemo, Rad versus Surgery, chemo, Rad. He recommends all three. Sounds like all the biopsies of the tonsil, lymphs are done intra- operatively???? Then removal of tumor and lymphs at the same time??? I feel confused because I thought we did biopsies prior, to find the primary, then decide on a course of action??? He said we will talk more at the next visit after scans.

 I guess I feel confused, and I’m a nurse!! It’s an overwhelming process for patients! My confusion is how he could be so confident of the treatability of my husband’s situation, when we don’t even know stage, Primary site, etc?? I want so much to hold onto his words, and he’s done over 8000 Head and neck surgeries, but I also don’t want to make decisions based on inaccurate hope or information. I probably sound like Eeyore, I just want my husband and I to be able  to make informed decisions. 

Also, when do you end up meeting other physicians involved in the care, like Oncology, Rad Oncology, therapists etc?

Thank you to everyone for your patience......

Elizabeth

It is a pretty typical case of hpv...

His confidence is based on the knowledge that P16 expression all but guarantees that it's HPV related...which makes the disease highly treatable and for a large % curable.  The staging for HPV head and neck cancer was just recently redone and now only the sickest patients end up with Stage 4 disease.  A typical presentation where you have a lymph node on the neck be first indication with no visible disease in the throat is often stage 1 or 2.  I was the same.  

As he said, the primary site is likely either the base of tongue or one of the tonsils (or the spaces in between).  They've developed a pretty good understanding of what this disease does and where it goes.

Likely, your PET scan will come back negative for anything (just like mine did).  I had two procedures, the first was a neck disection to remove the affected lymph nodes along with a tonsillectomy and some biopsies of the base of the tongue.  Since I still had my tonsils (and obviously didn't need them) they went ahead and removed them by chance that my primary was in one.  They then took a random shot at the base of my tongue and got lucky and hit the tumor (that didn't show on scans and wasn't visible via scope).  At that point they knew where the primary was and once I healed up I did the robotic surgery to have them remove any remaining primary and get good margins.  6 weeks after that I started radiation.

Really, identification of the primary is a big driver of what treatment you might receive.  Unknown primary and you're going to get chemo and radiation to the suspected spots (tonsils, tongue).  If they can ID the primary then you will have other options...  Surgery if you want or chemo/radiation...  Or you might even end up with just surgery and radiation.  Also, they can look at the pathology of the nodes and/or primary tumor and identify whether or not it has any high risk features like extranodal extension (which just means, does it look like it's more invasive and aggressive).

You'll meet the various specialties like Rad Onc and Medical Oncology once you have a report from your cancer centers tumor board where they've put a plan in place for you.

Long story short...  You're already ahead of the game with your training and you'll be well set up to help care for him after surgeries and such.  Your cancer program is top notch and it sounds like they are on the right path.  If you aren't clear on steps and timing just let them know.  They'll be happy to explain it again.  Much that you hear goes out the window early on due to the stress.

Brandon

PipLily

johnsonbl said:

It is a pretty typical case of hpv...

His confidence is based on the knowledge that P16 expression all but guarantees that it's HPV related...which makes the disease highly treatable and for a large % curable.  The staging for HPV head and neck cancer was just recently redone and now only the sickest patients end up with Stage 4 disease.  A typical presentation where you have a lymph node on the neck be first indication with no visible disease in the throat is often stage 1 or 2.  I was the same.  

As he said, the primary site is likely either the base of tongue or one of the tonsils (or the spaces in between).  They've developed a pretty good understanding of what this disease does and where it goes.

Likely, your PET scan will come back negative for anything (just like mine did).  I had two procedures, the first was a neck disection to remove the affected lymph nodes along with a tonsillectomy and some biopsies of the base of the tongue.  Since I still had my tonsils (and obviously didn't need them) they went ahead and removed them by chance that my primary was in one.  They then took a random shot at the base of my tongue and got lucky and hit the tumor (that didn't show on scans and wasn't visible via scope).  At that point they knew where the primary was and once I healed up I did the robotic surgery to have them remove any remaining primary and get good margins.  6 weeks after that I started radiation.

Really, identification of the primary is a big driver of what treatment you might receive.  Unknown primary and you're going to get chemo and radiation to the suspected spots (tonsils, tongue).  If they can ID the primary then you will have other options...  Surgery if you want or chemo/radiation...  Or you might even end up with just surgery and radiation.  Also, they can look at the pathology of the nodes and/or primary tumor and identify whether or not it has any high risk features like extranodal extension (which just means, does it look like it's more invasive and aggressive).

You'll meet the various specialties like Rad Onc and Medical Oncology once you have a report from your cancer centers tumor board where they've put a plan in place for you.

Long story short...  You're already ahead of the game with your training and you'll be well set up to help care for him after surgeries and such.  Your cancer program is top notch and it sounds like they are on the right path.  If you aren't clear on steps and timing just let them know.  They'll be happy to explain it again.  Much that you hear goes out the window early on due to the stress.

Brandon

Thanks for sharing so many details! So reassuring!

( I do have an update about the PET, if you have any thoughts)..... I posted that below. 

PipLily

PET Results ( where the original lymph node biopsy

Hello......just received a call from the PA who works for our ENT Surgeon. PET results show lymph node uptake on the left ( where the original lymph node was swollen, then removed for biopsy), no Primary site identified on PET, But it did show some activity/ uptake  in a lymph node, or area, on the right neck under the jaw as well. No activity seen in lungs, bones, or anywhere else, and CT Chest was normal. She said our doctor will go over in detail what this means, treatment options, etc at our appointment next week. The re workup of the lymph node by their pathologist was definitely positive for HPV 16. She said that the pathology report does NOT mention extracapsular extension. 

Am I over-reacting at this point if I’m worried about nodes on BOTH sides of the neck being involved? Does this mean it is more aggressive? I was starting to breathe a little easier about things, but not sure what that information adds to the mix? Is Proton Therapy an option if both sides of neck/ lymph nodes are involved? And do you have to find the primary in order to be a candidate for proton therapy? All questions we will ask next week, but just wondered if anyone has insight or information ahead of time. 

Again, thanks for all the reassurance and kindness I’ve experienced!!!!!

Elizabeth

Santatim

Eerily Similar

Your husbands symptoms sound so similar to my experience.  I woke up with a large swelling in my neck and biopsy found squamous cell p16 cancer in the lymph node on right side.  At first they called it cancer of unknown primary but the radiologist told me this type cancer is always a skin or throat cancer and even though first surgeon failed to find throat cancer and I had no obvious skin cancers the radiologist insisted I see a specialist in TORS surgery.  I did and he fould the cancer at the base of my tongue.  I had 30 rounds of radiation and was able to avoid chemo.  I am 6 months in remission now.  Good luck , oh and I'll be 60 next week.