HPV Tonsil cancer

jimmybd

Hi everybody. After discovering a lump on my neck I saw my doctor who took a biopsy. Long story short: Stage 4, HPV positive, squamous cell carcinoma. Primary site being the tonsil and base of tongue which spread to the upper jugular lymph node causing the lump on my neck. I just completed three cycles of chemo and 35 radiation treatments. In 12 weeks doctors tell me they will have me do a PET scan to find out the status of my cancer. My worry is that the lump on my neck, although smaller, is still there. Does this mean the treatments didn't work? My oncologist only says to wait to the PET scan results but I'm obviously worried. Have any of you had this happen? Should I start digging my grave? Thanks

KTeacher

First

Welcome.  I hope that you were at least lurking at the site during treatment.  Sounds like you had the standard treatment.  Some people have surgery after treatment as a 'clean-up.'  After I had Cyberknife the doctor said after the first scan that the tumor was actively dying.  Hopefully that is the same for your lump.

phrannie51

Hi Jimmy...and welcome

to the club no body wants to join.

I would say hold off on that grave .  If you just finished chemo and rads, you are still cooking....the node might just be slow getting back to normal size.  I did chemo and 35 rads also....my ENT told me that after my PET I "might" have to get a neck dissection if the node was still lighting up (also at 12 weeks post treatment).  Nothing lit up, so I never did have any surgery.  It does NOT mean the treatment didn't work.  You probably know from when you got diagnosed to when you started treatment, that this disease has a whole lot of wait and see attached to it.

p

CivilMatt

welcome

Jimmy,

Whoa buddy; there will be no grave digging around here.  This is your welcoming, so welcome.

The rads more than likely killed the cancer and the lump is no longer active, just slow to disappear.   We hear all kinds of treatment options and you are not unusual.  So, try to relax and wait for your first scan, which at 12 weeks can still read hot and be nothing.

Matt

wmc

Welcome to the H&N Group

You won't be needing any shoval, unless you just want to work in your garden. The sucess rate is very high with HPV+, somewhere around 90% so don't panic yet. Things move at a SLOW pace with this. Your gland might just need time to go away, or the rad zappet it so hard it might need to be removed. That is most likely the worst. Recover is slow. Oh, also read the "Superthread (Read Only) at the top. It will answer many questions. Many of the outhers on here have gone through this and are doing just fine. You will come to understand the term, The New Normal. You made it through the chemo and rads, now its time to recover and heal up. Thke care and may your tomorrow be better than today.

wmc

donfoo

road sign says recovery

Glad to hear you are past treatment, now recovering. I'm no doctor but I am certain the radiation and chemo got the cancer and anything you can feel or see is residual tissue, dead, dying, inflammation, scarring, etc.

I had induction TPF chemo before concurrent chemo-rads. After induction the very visible neck node was completely gone. After chemo-rads and to today, I have a visible bump that is rad scarring. It is all under the skin but you can feel this rather tough and tight area; there is no pain at all.

Believe in your doctors and give yourself time to heal and try not to worry. Even at the 12 week scan, false positives are not that uncommon.  

debbiejeanne

jimmy, hi and welcome to our

jimmy, hi and welcome to our family.  leave that shovel in the garage, you won't be needing it.  i didn't have chemo so can't comment on that but i believe the tx worked and your neck bump just needs time to heal and go down.  the rads will continue to cook you for a few weeks to a month even once you finish tx.  btw, congrats on finishing tx!  that is a major accomplishment.  now you are on the road to healing.  you must be patient as it is a very slow process.  i would expect change/improvements in months and not days.  your body has been thru A LOT and it will need a lot of time to recover.  so, slow down, take some deep breaths and be patient.  the healing will come.

God bless you,

dj

Joanielo

I Had The Same Fear

Hi Jimmy,

I had stage 3 HPV toncil cancer too.  My swollen lymph node was still swollen after treatments too. I was really worried.   My doctor said that it can take some time to go down.  Eventually, it did go back down to normal.  I am now 19 months out of treatment and still cancer free.  I hope you keep us all updated on how you are doing.

gregsmith91

Jimmybd

My name is Greg, I am new to this site. I had/have stage 4 squamous cell carcinoma. Primary site being the right tonsil. then spread to two lymph nodes in my neck. your cancer sounds alot lime mine. Mine was also caused by HPV. Luckily. My neck also swelled, They first took a CAT scan, then a biopsy, then a PET scan. I had 7 weeks of radiation, and 3 large doses of Ciasplatin. My lump is gone and the doctors believe i responded well to the treatments. I lost 40 percent of my hearing in my left ear and 26 percent in my right, caused by the chemo. I just finished my treatments a couple of weeks ago, so i'm still struggling with my taste buds. and I haven't had a PET scan yet. My doctors want to wait for 3 months to let everything settle down. So I know the worry, I'm sure everyone on here knows it. But you got to try and stay positive. Worrying about it will do nothing but make it worse. I'm be praying for you. Keep your head up

Guzzle

gregsmith91 said:

Jimmybd

My name is Greg, I am new to this site. I had/have stage 4 squamous cell carcinoma. Primary site being the right tonsil. then spread to two lymph nodes in my neck. your cancer sounds alot lime mine. Mine was also caused by HPV. Luckily. My neck also swelled, They first took a CAT scan, then a biopsy, then a PET scan. I had 7 weeks of radiation, and 3 large doses of Ciasplatin. My lump is gone and the doctors believe i responded well to the treatments. I lost 40 percent of my hearing in my left ear and 26 percent in my right, caused by the chemo. I just finished my treatments a couple of weeks ago, so i'm still struggling with my taste buds. and I haven't had a PET scan yet. My doctors want to wait for 3 months to let everything settle down. So I know the worry, I'm sure everyone on here knows it. But you got to try and stay positive. Worrying about it will do nothing but make it worse. I'm be praying for you. Keep your head up

Similair

Greg/Jimmy, Im about 9 weekesout from tonsil cancer with spread to local nodes. Had a neck dissection / Chmo / radio. Had an inspection which looked good - MRI next. PET down the line. Hope you both heal well

 

Regards, Gary

robswife87

Guzzle said:

Similair

Greg/Jimmy, Im about 9 weekesout from tonsil cancer with spread to local nodes. Had a neck dissection / Chmo / radio. Had an inspection which looked good - MRI next. PET down the line. Hope you both heal well

 

Regards, Gary

Hubby had the same

4 nodes on left 2 on right. the nodes shrunk during the rads but the biggest one was still the size of a pea when he finished. 12 weeks out had a PET and it showed minimal glowing of that node. He was still cooking. Another 3 months node was normal and so was PET. We are 14  months out of treatment and all is well.

Try not to worry, although i know it is hard. If your PET at 12 weeks shows a small glow just wait until 24 week PET and you will be good. 

Sandy

Viilik70

Lump in neck

I also had a lump in my neck to begin with, but they took it out to biopsy it then two radical neck dissections. The good thing about leaving it in is less nerve damage to your neck from them hacking on your neck. My right shoulder has dropped from all of the nerve damage done from surgery. I'd say your doctors are doing the right thing. Less is better sometimes, hang in there and welcome to the forum. 

God bless,

John J

jimmybd

HPV tonsil cancer

Thank you everyone for your support. Your advice was golden. I am feeling much better and on the road to a recovery hopefully. Thank you again for your kindness and generosity.

wmc

jimmybd said:

HPV tonsil cancer

Thank you everyone for your support. Your advice was golden. I am feeling much better and on the road to a recovery hopefully. Thank you again for your kindness and generosity.

Glad to hear you are doing good.

Remember we're open 24/7, so if you need to vent, or just had a great day we are here.

Bill

Sailor123

Joanielo said:

I Had The Same Fear

Hi Jimmy,

I had stage 3 HPV toncil cancer too.  My swollen lymph node was still swollen after treatments too. I was really worried.   My doctor said that it can take some time to go down.  Eventually, it did go back down to normal.  I am now 19 months out of treatment and still cancer free.  I hope you keep us all updated on how you are doing.

Congratulations

Hey Joan:

I'm curious what your residual symptoms are at 19 months out.  Do you have saliva production? Taste?  How's your energy level?  I'm six months out and curious.

Thanks

Shirley

Sailor123

gregsmith91 said:

Jimmybd

My name is Greg, I am new to this site. I had/have stage 4 squamous cell carcinoma. Primary site being the right tonsil. then spread to two lymph nodes in my neck. your cancer sounds alot lime mine. Mine was also caused by HPV. Luckily. My neck also swelled, They first took a CAT scan, then a biopsy, then a PET scan. I had 7 weeks of radiation, and 3 large doses of Ciasplatin. My lump is gone and the doctors believe i responded well to the treatments. I lost 40 percent of my hearing in my left ear and 26 percent in my right, caused by the chemo. I just finished my treatments a couple of weeks ago, so i'm still struggling with my taste buds. and I haven't had a PET scan yet. My doctors want to wait for 3 months to let everything settle down. So I know the worry, I'm sure everyone on here knows it. But you got to try and stay positive. Worrying about it will do nothing but make it worse. I'm be praying for you. Keep your head up

Hi Jimmy:
I have been through

Hi Jimmy:

I have been through about the same thing as you.  I too lost a lot of my hearing.  I have been told that regeneration can take place for years and that some of that may be restored.  Its a bummer but a small price to pay, I suppose.

FYI...I had heard of so many false positives at three months and I didn't need any additional fear or stress.  Against the urging of my doctors I insisted on waiting four and a half months for my first PET.  It was a good call as everything came back clear.  Just a thought.

Shirley

AlreadyOne

15 months post treatment

Hello All, New here but wanted to share my hpv related tonsil cancer experience. I am a 60 year old female and was diagnosed in the fall of 2016. I had my tonsils removed and they did a biopsy at the same time. It came back positive for stage 4 tonsil cancer. I started treatments in November of 2016. Fortunately, I was able to take part in a clinical trial that was looking at using less intensive treatments to kill the hpv cancer. I had six weeks, 30 rounds of radition and five rounds of chemo - Cisplatin. It was an ordeal. I also had a peg tube placed in my stomach and even though it hurt, I'm glad I had it. The worst pain came during the two weeks post treatment. That is when I couldn't talk or drink or eat. I lost over 30lbs. It's been 15 months and my saliva has mostly returned, I can eat spicy food and drink red wine. My neck is cronically stiff on my right side. I just had another CT scan last week and my right lymph node has shrunk to .8cm. This is a survivable cancer but the treatment is brutal. Hang in there and be sure you have a good support system. Hope this helps.