New to group/surgery question

ericyvonne

Good afternoon,

 

My husband was recently diagnosed with lingual tonsil SCC, still waiting on HPV status, hoping for positive result because prognosis seems much better (from what I have read).  In 1 1/2 weeks he will undergo a TRANSORAL ROBOTIC BILATORAL LINGUAL TONSILLECTOMY and neck dissection to remove lymph nodes in neck that have nodes with cancer.  The doctor said if HPV is positive then he is stage 1, if negative then he is stage 4.

Looking for people with similar surgeries to find out recovery time from surgery and how quickly they will start chemo and radiation after surgery?

 

My husband is only 44, so this has been quite a shock.  Only issue he was having was a lump in his neck that in the beginning we thought still was swelled from bronchitis and influenza a couple weeks before.  It now is causing him headaches and nausea from the headaches.  2 ENTs have done the nose scope and see nothing suspicious but PET scan showed activity in lingual tonsils (and of course lymph  nodes in left neck),

 

Thanks for information and advice!!!

 

 

 

CivilMatt

Welcome to the machine.

ericyvonne,

Stage I (if hpv+) and stage IV (if hpv-).  That is a new one.

Well, Many H&N members can hardly wait to start to recover from surgery before staring the rads and chemo (your husband sound like he is cut from the same cloth.

It will happen very quickly, but may not seem to fast when you are waiting.

I had one guy which had my same diagnosis want to borrow my mask and ID so he could get going on treatments. (this was a test of your humor, how did you do?).

Best of luck to both of you.

Matt

bebo12249

I had the same surgery but

I had the same surgery but not robotic. I started chemo/rads about 3-4 weeks after surgery..

johnsonbl

Sounds familiar... :-)

I was diagnosed with HPV+ OPSCC of my lingual tonsil in January of 2017.  I had TORS surgery and a neck disection to remove the 2 nodes that had blown up and had cancer in them.  I didn't do them at the same time though.  I had my neck disection first, during which they took my palatine tonsils and biopsied my lingual tonsil looking for the primary.  I had TORS later after the biopsy confirmed that it was in my lingual tonsil.

Because I was HPV+ and they located the primary i was given the choice between chemo and radiation as definitive treatment or do surgery (TORS) followed by radiation alone.

I was 42 at the time, in pretty good health and I missed very little work.  The TORS surgery for me was nothing.  I was in the hospital 1 night, went home the next day.  Took just a couple days off.  The neck disection was a little rougher.  Was out about a week.  He'll get a nasty looking drain and such and you just don't need to be running around with that thing and the staples freaking people out.  I had never had surgery before and when it was all said and done I'd discovered I was actually apparently good at having surgery.

The standard is to start your radiation or radiation and chemo within 6 weeks of surgery.  Just depends on how well and fast you heal.  You may also have to have wisdom teeth removed before the radiation starts.  I had mine out during my TORS surgery so I was out the whole time.  The timing just worked out in my case, might not in his.

I hope it's HPV+ and that he fairs as well as I did.  I'm a little over 1 year out from ending radiation and life is good!  Doing fantastic.  Tired, because I won't sit still!  Too many fish to catch, too much baseball to coach, to much fun to have!  :-)  Happy to answer other questions.

Brandon

OKCnative

I don't get the staging you

I don't get the staging you described above. I was stage three based on the fact the cancer was present outside the primary tumor and was in my neck lymph nodes (like your husbands). And, due to the size of the tumor.

As I've stated several times on this board, I am a huge proponent of waiting to cut (surgery). I fired my first team of doctors and found a respected cancer center that also believed in waiting for surgery. When my treatment ended, no surgery was needed. At the same time a friend was also diagnosed with HPV cancer in one tonsil. He too went the route of treatment first and then re-consider surgery. He completed treatment a month or two after me and did not require any surgery at all.

Many people get surgery. In fact, it was "just what you did" in years past. That is often not the case today. Surgery has it's own life altering issues and I wanted to avoid those if possible.

 

donfoo

Surgery is viable

Cancer treatment is complex and many factors are considered. Depending on the specifcs of the case and patient, surgery is recommended as the primary option. It has far fewer long term side effects than chemo and radiation. It is given more weight for younger patients due to the less chance of side effects. Radiation for the most part is a one shot deal. Reradiating an area is very difficult and the grays allowed are fewer so less effective. Having surgery without rads leaves it for the future if ever needed. 

Remember, the cancer doctors and the cancer boards often respresent more than a century of professional diagnosis and treatment. It is foolish for any of us to think we can have any idea of what is better for us. Find a team you trust and then trust them. That's all you can do. 

OKCnative

donfoo said:

Surgery is viable

Cancer treatment is complex and many factors are considered. Depending on the specifcs of the case and patient, surgery is recommended as the primary option. It has far fewer long term side effects than chemo and radiation. It is given more weight for younger patients due to the less chance of side effects. Radiation for the most part is a one shot deal. Reradiating an area is very difficult and the grays allowed are fewer so less effective. Having surgery without rads leaves it for the future if ever needed. 

Remember, the cancer doctors and the cancer boards often respresent more than a century of professional diagnosis and treatment. It is foolish for any of us to think we can have any idea of what is better for us. Find a team you trust and then trust them. That's all you can do. 

I gotta say, this varies

I gotta say, this varies greatly. My first doctors were - as you stated - of a mind that younger-ish patients (like myself - 47 at the time) should have surgery first and then rads and chemo. As I've said, I fired them and went to a large cancer center in my state. This team of doctors - were of the opposite mind than you stated above - and felt that for all patients that could physically and mentally handle it, you should treat first then see about surgery.

My second team actually told me that surgeries would most likely have lifelong side effects effecting my speech (surgery on my tongue) and that neck dissection almost ensures lifelong issues with your neck and lymphedema.

I agree that many factors impact what's best for an individual patient, but I disagree that "it is foolish for any of us to think we can have any idea of what is better for us." Firing my first team was the best thing I ever did and I did it because I told them what I felt was best for me. I've continued that line of thought throughout my treatment. I delayed the start of treatment because I felt my tongue needed another 10 days or so to heal from the biopsy before they started applying radiation to it - docs wanted to start just 4 days later. I refused a PEG tube even when the docs said it was necessary and that "virtually everyone gets one." - Made it through just fine without a PEG tube and began eating solids very quickly after treatment. I refused a chemo port even though the docs said my veins wouldn't hold up to all the chemo and lab work - veins held up fine. I stopped taking all opioids very early on because I felt THC was a better option for me even though the docs said I needed to numb the pain with opioids to get through this. I was told to stay home and rest during treatment for a better result - I worked every day and drove myself to daily radiation.  All of that to simply say, people often know what's best for themselves and you should never just show up to a doctor's appointment and simply nod and do whatever the say. Speak up, share your concerns, and if you know the advice to be wrong for you, then go with your gut - ultimately it's YOU who has to live or die with all of the decisions.

dalaitom

OKCnative said:

I gotta say, this varies

I gotta say, this varies greatly. My first doctors were - as you stated - of a mind that younger-ish patients (like myself - 47 at the time) should have surgery first and then rads and chemo. As I've said, I fired them and went to a large cancer center in my state. This team of doctors - were of the opposite mind than you stated above - and felt that for all patients that could physically and mentally handle it, you should treat first then see about surgery.

My second team actually told me that surgeries would most likely have lifelong side effects effecting my speech (surgery on my tongue) and that neck dissection almost ensures lifelong issues with your neck and lymphedema.

I agree that many factors impact what's best for an individual patient, but I disagree that "it is foolish for any of us to think we can have any idea of what is better for us." Firing my first team was the best thing I ever did and I did it because I told them what I felt was best for me. I've continued that line of thought throughout my treatment. I delayed the start of treatment because I felt my tongue needed another 10 days or so to heal from the biopsy before they started applying radiation to it - docs wanted to start just 4 days later. I refused a PEG tube even when the docs said it was necessary and that "virtually everyone gets one." - Made it through just fine without a PEG tube and began eating solids very quickly after treatment. I refused a chemo port even though the docs said my veins wouldn't hold up to all the chemo and lab work - veins held up fine. I stopped taking all opioids very early on because I felt THC was a better option for me even though the docs said I needed to numb the pain with opioids to get through this. I was told to stay home and rest during treatment for a better result - I worked every day and drove myself to daily radiation.  All of that to simply say, people often know what's best for themselves and you should never just show up to a doctor's appointment and simply nod and do whatever the say. Speak up, share your concerns, and if you know the advice to be wrong for you, then go with your gut - ultimately it's YOU who has to live or die with all of the decisions.

I'm a little confused at what

I'm a little confused at what you say. Here you say "Made it through just fine without a PEG tube" while on another thread you say " I'd literally cough up bloody bits of throat tissue and my wife had to go outside when I took in calories because I'd cry and scream out loud." To me, that sounds somewhat less than "made it through just fine."

OKCnative

dalaitom said:

I'm a little confused at what

I'm a little confused at what you say. Here you say "Made it through just fine without a PEG tube" while on another thread you say " I'd literally cough up bloody bits of throat tissue and my wife had to go outside when I took in calories because I'd cry and scream out loud." To me, that sounds somewhat less than "made it through just fine."

It's throat cancer, not a

It's throat cancer, not a stroll through the park. My expectations were that I'd survive and be back to 100% normal in less than a year from diagnosis (which I am) - my expectations were not that I wouldn't suffer and that it wouldn't hurt. People most often utilize a PEG tube because they can't handle the pain (or even the thought of pain) of swallowing. The pain is very real but it's to be expected and very normal. I expected the pain, I endured the pain and I'm thankful that despite the pain I lived a fairly normal life throughout treatment. I'd consider that "making it through just fine." 7-8 moths since my last radiation treatment and I barely even recall the pain. I've found that often Americans are so pampered they do absolutely anything to avoid pain and discomfort, even if their solution causes so many more problems and potential problems. 

ericyvonne

Thanks for all the advice! HPV +!!

My husband is HPV+, therefore Stage 1 instead of 4. In January 2018, a new staging was released for head and neck hpv positive cancers He is having surgery in 2 days and then based on pathology he will have radiation and now only maybe chemo.

Thanks again for any advice on getting through surgery 

johnsonbl

You got it...

Good luck on the procedure!

Brandon

wbcgaruss

Procedure Name

The procedure name sounds big, it's long but I pray it is only in the name that sounds involved

and it is a very easy procedure.

But in the world of cancer we feel very serious about this stuff and don't take it lightly no matter

large or small it is an unwelcome visitor.

Praying it is HPV is positive that he is stage 1 which I assume would be better than 4 as I think higher numbers are more advanced.

Hope your procedure goes well with a quick easy recovery.

So you folks can get back to regular living.

grace2017

ericyvonne said:

Thanks for all the advice! HPV +!!

My husband is HPV+, therefore Stage 1 instead of 4. In January 2018, a new staging was released for head and neck hpv positive cancers He is having surgery in 2 days and then based on pathology he will have radiation and now only maybe chemo.

Thanks again for any advice on getting through surgery 

Hang in there

Just wanted to say this sounds very similar to my husband's diagnosis and treatment plan.  However, he was considered Stage IV due to lymph node activity and spreading as well as size of tumor.  He finished up radiation and chemo treatment in January and just had his six-month scoping a few days ago and he is looking great.  So thankful for this news.  It has been a rough year, but it does get better!  Feel free to send me a message anytime if you have any questions.  Praying your husband's surgery went well. 

ricksmithgolfer

CivilMatt said:

Welcome to the machine.

ericyvonne,

Stage I (if hpv+) and stage IV (if hpv-).  That is a new one.

Well, Many H&N members can hardly wait to start to recover from surgery before staring the rads and chemo (your husband sound like he is cut from the same cloth.

It will happen very quickly, but may not seem to fast when you are waiting.

I had one guy which had my same diagnosis want to borrow my mask and ID so he could get going on treatments. (this was a test of your humor, how did you do?).

Best of luck to both of you.

Matt

new staging

New staging just came out this year. They seperated the HPV negative and HPV positve from one another. I was just diagnosed with Tonsil cancer and I would of been a stage 1Va in the old staging but now am considered a stage 1 because I am HPV positive. I think the new staging is the 8th edition of the AJCC. You can find the new guidlines online. The reason they did it was because the cure rate was so much higher for the HPV positive versus the HPV negative cancers. If your into stats my onocolgist said the cure rate on my is well over 90% now.

donfoo

ricksmithgolfer said:

new staging

New staging just came out this year. They seperated the HPV negative and HPV positve from one another. I was just diagnosed with Tonsil cancer and I would of been a stage 1Va in the old staging but now am considered a stage 1 because I am HPV positive. I think the new staging is the 8th edition of the AJCC. You can find the new guidlines online. The reason they did it was because the cure rate was so much higher for the HPV positive versus the HPV negative cancers. If your into stats my onocolgist said the cure rate on my is well over 90% now.

Fantastic

That is such great news. It's been long suggested that HPV+ forms offered far better outcomes than the older smoker related HNC. Glad to see the distinction is now recognized. Will need to get an updated copy. thanks

Kskokko

ericyvonne said:

Thanks for all the advice! HPV +!!

My husband is HPV+, therefore Stage 1 instead of 4. In January 2018, a new staging was released for head and neck hpv positive cancers He is having surgery in 2 days and then based on pathology he will have radiation and now only maybe chemo.

Thanks again for any advice on getting through surgery 

Surgery

By now the surgery is over.    I went through the same thing.    During surgery they ENT discovered that the cancel had breached the lymph node so they put chemo back on, along with the radiation.     

Keep us posted.

momall25ofu

johnsonbl said:

Sounds familiar... :-)

I was diagnosed with HPV+ OPSCC of my lingual tonsil in January of 2017.  I had TORS surgery and a neck disection to remove the 2 nodes that had blown up and had cancer in them.  I didn't do them at the same time though.  I had my neck disection first, during which they took my palatine tonsils and biopsied my lingual tonsil looking for the primary.  I had TORS later after the biopsy confirmed that it was in my lingual tonsil.

Because I was HPV+ and they located the primary i was given the choice between chemo and radiation as definitive treatment or do surgery (TORS) followed by radiation alone.

I was 42 at the time, in pretty good health and I missed very little work.  The TORS surgery for me was nothing.  I was in the hospital 1 night, went home the next day.  Took just a couple days off.  The neck disection was a little rougher.  Was out about a week.  He'll get a nasty looking drain and such and you just don't need to be running around with that thing and the staples freaking people out.  I had never had surgery before and when it was all said and done I'd discovered I was actually apparently good at having surgery.

The standard is to start your radiation or radiation and chemo within 6 weeks of surgery.  Just depends on how well and fast you heal.  You may also have to have wisdom teeth removed before the radiation starts.  I had mine out during my TORS surgery so I was out the whole time.  The timing just worked out in my case, might not in his.

I hope it's HPV+ and that he fairs as well as I did.  I'm a little over 1 year out from ending radiation and life is good!  Doing fantastic.  Tired, because I won't sit still!  Too many fish to catch, too much baseball to coach, to much fun to have!  :-)  Happy to answer other questions.

Brandon

Brandon, where did you have

Brandon, where did you have the TORS surgery done?  My husband has his surgery on August 16th and they'll do the TORS and neck disection at the same time.  He also told us four to six weeks out before my husband starts the radiation.  Thank you for your post.  Hearing your good progress is heartening.  

momall25ofu

OKCnative said:

I gotta say, this varies

I gotta say, this varies greatly. My first doctors were - as you stated - of a mind that younger-ish patients (like myself - 47 at the time) should have surgery first and then rads and chemo. As I've said, I fired them and went to a large cancer center in my state. This team of doctors - were of the opposite mind than you stated above - and felt that for all patients that could physically and mentally handle it, you should treat first then see about surgery.

My second team actually told me that surgeries would most likely have lifelong side effects effecting my speech (surgery on my tongue) and that neck dissection almost ensures lifelong issues with your neck and lymphedema.

I agree that many factors impact what's best for an individual patient, but I disagree that "it is foolish for any of us to think we can have any idea of what is better for us." Firing my first team was the best thing I ever did and I did it because I told them what I felt was best for me. I've continued that line of thought throughout my treatment. I delayed the start of treatment because I felt my tongue needed another 10 days or so to heal from the biopsy before they started applying radiation to it - docs wanted to start just 4 days later. I refused a PEG tube even when the docs said it was necessary and that "virtually everyone gets one." - Made it through just fine without a PEG tube and began eating solids very quickly after treatment. I refused a chemo port even though the docs said my veins wouldn't hold up to all the chemo and lab work - veins held up fine. I stopped taking all opioids very early on because I felt THC was a better option for me even though the docs said I needed to numb the pain with opioids to get through this. I was told to stay home and rest during treatment for a better result - I worked every day and drove myself to daily radiation.  All of that to simply say, people often know what's best for themselves and you should never just show up to a doctor's appointment and simply nod and do whatever the say. Speak up, share your concerns, and if you know the advice to be wrong for you, then go with your gut - ultimately it's YOU who has to live or die with all of the decisions.

OKCNative, can I ask if your

OKCNative, can I ask if your treatment was at OU?  That is where we are going.  I agree that each patient has his/her own needs.  My husband was insistent that he wants the cancer OUT of his body ... so he wants surgery first.  The research says there are advantages, in that milder doses of radiation can be administered.  The doctor at OU stressed that he could go with r/c first and might not need surgery, but for my husband that was not an option.