HPV+ Tonsil cancer- Histopathology report

What your condition is now is the only significant part of your condition.  There are thousands of different stories on how detection occurs, but the major point is you seem to be in one of the Stages (and Stage is a proper noun in this situation) where treatment is highly effective.  Tho the treament regimen is evolving as new therapies appear, they come slow to this particular cancer because the success rate is so high with the current forms.

Significant actors that will appear soon:

Probably you meet an ENT surgical specialist.  He removes tumors, if possible.

Paired with him will probably be a Radiation Oncology specialist.  He plans and monitors any radiation treatments.  If they go that route there can be up to about 35 doses, usually delivered on weekdays over the course of seven weeks.  They give you weekends off to recover.

Depending on whether surgery is not possible, you may ended up with the dreaded Chemo therapy, which will be planned and monitored by a Chemo Oncolgist.  Chemo seems to come in either 3 doses if Cisplaten, or 7 if Carbol-taxol/Erbutux/etc.  In any case you will be given a supply of various other drugs to help with side-effects like nausea.  You will hopefully get classes in all of this.

That's pretty much the Standard worldwide.  The HPV form seems to have been a surprise in the 1980s when it was identified,  but it is well known now. 

Of the various major cancers it is said that this is the hardest course of treatment, but the one most frequently cured.  I have no idea if that is accurate, seems to me radiation and chemo combined with lousy odds would be worse.

It is possible, so I am told, to blitz through this treatment.  That is not my experience, but it could happen.  Recovery is all over the map.  I really felt that mine took a year, tho I was physically active at a sort of normal at about 4 months.  There is one guy here abouts that was running marathons at about that point.  Others come back much more slowly, some seemingly not at all.  You will hear an awful lot of 'it depends', because tho the treatments may be standard, individuals aren't.

Things I would do at this point:

Get a couple of digital forehead reading infrared type thermometers.  Should cost about $20.  Monitoring your temp becomes critically important.  Have one always available.  Body temp is major leading indicator of problems.

Get a spiral bound notebook and keeps notes on EVERYTHING, especially body reading, phone numbers, names who did what when.  If things go fine, you won't need it.  If things go bad knowing you spiked a 102 temp 5 hours after Chemo Can be very useful to know.

Be nice to your spouse/parents/children/partner.  You will really, really need them. 

Eat. Regardless the treatment direction you will lose weight, possibly A LOT.  While that may seem desirable starting out, later it becomes a major issue.  Start repeating now: Calories = Recovery.

Your description of your tumor matches mine - right tonsil, margins too small for surgery, but I had no tonsilectomy.  We decided to just nuke the whole thing since it looked like we would end up there anyway.  Thus Stage III T3N1M0 +HPV SCC.  35 doses IMRT radiation, 6 doses of Carbol-Taxol chemo.  I was scheduled for 7, but by week 7 my body was so stressed we decided to skip it. My cancer was the least of the medical problems, they really have a very effective course of treatment, but it also leads to a variety of potential side problems that are more quickly and certainly fatal.  I trusted my Oncs totally, they were backstopped by nurses and techs who are the finest evidence of humanity on the planet. 

I would be very wary of ALL of the other sites on cancer except this one for now.  There is zero controlled-experiment evidence that any form of diet changes any cancers in a positive way.  Periodically one of the alternative treatment pushers wanders in here.  We pilory them and they leave.  The 'chinese diet' approach is interesting given that the Chinese currently are engaged in a crash program to manufacture linear accellorators and train sufficient radiation medicine technicians so they can deploy 'western holistic medicine' to hospitals across China. 

Yours is going to include a fight to get ANY calories down, you will probably live on various high calorie drink products for a while.  'How do I get my partner to not starve to death' is a recurring theme here. I wouldn't worry about the cancer, yeah I know that sounds weird.  They know you have it, they know how to cure it.  They are about to bring a tremendous amount of technology to deal with it.  Your focus needs to be on surviving treatment.

Andrea39 said:

Thank you so much for reading

Thank you so much for reading my post and providing your feedback. I hope everything turns well for me during and after the course of my treatment.

You mentioned about the diet. Would you kindly elaborate litte more on that? Currently my search on the internet tells me that I should avoid meat, sugar, oily and fired stuff, junk. And I should conume vegies as much as possible. Please tell me how good this advice is? I know that if i leave meat i wont have protien diet which might be needed during the treatment. Please comment.

I am seing my doctor on tuesday. He has already mentioned that I will have rads and chemo. My right tonsil which contained the malacious tumor is already out in surgery that my doctor did for findig the primary cancer. Since the patahology report reveals margins uninvolved with shorteset distance of 2mm from the tumor in the removed tonsil, I hope that the cancer cells have completely been removed (Isn't it?). Therefore, no further surgery is in option and doctors will treat me with rads and chemo as you have mentioned. 

Thanks again for your elaborate comments and sugesstions. God bless you and your family for that. And May God heal all of us from this disease. 

 

But the lymph nodes remain.  I'm not sure about your base of tongue and whether or not the pathology report re: that was concerning for cancer or not (not a doctor).  Radiation and chemo are the standard of care.  In this case, HPV is a blessing and not a curse...unless you are one to live in the past...but I chose to be glad my cancer was caused by HPV (not glad I had cancer....but glad it was the very curable kind).

Concur with everyone else.  You'll be overwhelmed over the next few months.  Hang in there, ask as many questions as you need and find a support system to help you out.  You'll be dragging and out of sorts for a while but there is a light at the end of the tunnel.

This board is great for bouncing questions off of.  If you've seen 1 cancer patient you've seen 1 cancer patient...so lots of different perspectives but one common goal...to be cured and move on with life!

Brandon

AlejandroDeLaVega said:

Standard vs shortened treatment success (Chemo/Radiation)

Andrea, I just came across your posts.  Sometimes in an effort to be helpful (to be the knight in shining armour), people can be overly exuberant about what the know. I don't want to be guilty of such, as I realize that I must be careful in just presenting the facts of my situation and not give advice.  In November of 2015 I was diagnosed with your same type of cancer.  I went to 2 independent Oncoclogists and and two Radiologists (recommended by the Onconologists).  First, in all cases, they explained that this wasn't a life or death situation, but rather an inconvenience to go through with the standard treatement.  They all recommended surgery with the standards 6 weeks of chemo and radiation.  I then went to Mayo for a final opinion. They too concluded that everything would be fine BUT, they explained that they had been taking a different approach to what was considered the normal treatment.  Instead of the normal 6 weeks of treatment they explained they had great success with an abbreviated 2 week program which involved: 1 dose of chemo on the Monday of each of the  2 weeks (this was recommended only to make the subsequent radiaition treatmens more effective).  I then received a dose of radiation twice per day for only 2 weeks (Monday thru Friday for a total of only 20 radiation treatments).  In summary, they explained they felt that the old standard of 6 weeks of chemo/radiation (and resulting side effects) was overkill, and I belived this is now their standard protocol.  I underwent that suggested treatment with great success.  Towards the end of the two weeks, I was tiredand the radiation had taken a toll, but I experienced no effect from the chemo.  Of course, I can't compare my situation to yours.  The surgery was 6 1/2 hours as they identified and cut out a small canerous spot on my tonsil (easily identified), and also removed the effected lympnode from my neck.  Fortunately, clean margins all around.  Mayo said they had the most advanced equipment which allowed them to easily find the spot on my tonsil (not sure if is anything other surgeons don't have).  I have had my regular check ups since then with my surgeon and radiologist.  They've scoped my throat and I've had a subsequent PET scan. Praise God, all is clean and the prognosisi is great.   I am grateful for the abbreviated treatment schedule since I had talked to a few others how had undergone the standard 6 week protocol with very unpleasant side effects.  They were all cured and they are all cancer free these many years later, but the side effects and recovery time from the 6 week protocl were very unpleasant.  Again, not knowing the degree of your situation, I wouldn't know if you are a candidate for the abbreviated treatment, but it is worth asking your doctors what they think (or if they are aware of Mayo's approach to this).  Good luck and blessings to you. 

ADLaVega,

Welcome to the H&N forum, I am sorry that you are here, but glad that you received successful treatment.

I do not know the exact context of what you said:  “First, in all cases, they explained that this wasn't a life or death situation, but rather an inconvenience to go through with the standard treatment. “  There are a number H&N members who might disagree with that statement.

There has been a more pronounced shift to a tailored treatment regime.  After all, they should be getting better.

Time for lunch.

Matt

Andrea39 said:

Thanks for your response and

Thanks for your response and wishes. I wish and pray for your quick recovery. 

SO what I get from your post is that you had a dose of chemo first, followed by radiations and then surgey to disect off any cancer left(?). Something sounds like my oncologst have suggested me. Two cycles of chemo, and raditions (35). However, he didnt mention any need for surgery for me. 

Since my diagnosis, I have seen at least three different ENT surgeons who deal with head and neck  cancers. Yes, I have also been hearing from them that this is quite curable quoting almot around 80 to 85% success rate. With HPV positive and no smoking history, they are even more optimistic. As for the shrtened or standard treatment paths, my oncologist suggested that attempts have been made to reduce the rigour of the treatment for cases involving HPV, however, he was of the view that we are still not sure whether we shoud compromise on treatment as there is no dependable evidence so far to rely on. And since we get only one good chance to treat this cancer, we will always make sure not to have treated it subotimally. Therefore, we will follow the standard procedure and protocol. 

Anyways, i only wish that my cancer responds well to the treatment and doctors be able to apply appropriate treatments that cures it once for all with the command of God. 

Need the supprt and best wishes from all of you in future. I hope I will be cancer free soon and will be sharing my experience with you guys. I pary no one gets this disease. Stay blessed all of you. 

To clarify, I recieved the surgery first, and then 2 week treatment protocol. Sorry for any confuaion.  Best of luck.   

AlejandroDeLaVega said:

Hi Matt, when I said "in all

Hi Matt, when I said "in all cases", I meant that all of the oconologists/radiologists I spoke with (about my case) they all said it (my) situation wasn't life or death.  I can see how what I had written was confusing, for which I apologize. 

Your pointing this out is important. Thank you.

ADLaVega,

Whether you are Stage I or Stage IV, HPV+ or HPV-, Tongue,  Tonsil, Pharynx, Sinuses, Paranasal, Salivary, etc… these cancers can seem innocuous, but they are not.  While it is best to think positive (and I preach positive thinking) you would be remiss to assume this anything less than potentially very dangerous to your life and health.

I am on your team for survival with the minimum amount of side effect damage.  I am sure many cases present themselves with a less damaging treatment plan.  To be a recipient of a less is more, and to have a new normal closer to your old normal is everybody’s dream.

I thank you for your clarification.  This forum needs to be straight forward and honest without too much terror or wine and roses.

Enjoy your health and please keep us abreast of current (and new) treatment plans.  This is the information H&N members need to help make informed decisions.

Matt