New to group/surgery question

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

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

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 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 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."

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.

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 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.

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 

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.

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 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.