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Just joined the Head & Neck Club with SCC/HPV pos in the tonsil

patmac11
Posts: 4
Joined: Sep 2013

I had posted this in the previous thread and it was suggested I start a new one.  Thank you's to John, Matt and Phrannie for the welcome and the suggestions. 

"

I hate to say it but we've just joined this club too. We are at the beginning and I am on the internet just trying to find out alittle and get famliar with terms and stage some questions.  Memorial Day weekend we noticed the enlarged lymphnode.  Went to primary for check up on diabetes/heart stent issues he confirmed "ya that looks too big".  Sent hubby for ultra sound, then CAT.  Next see the ENT.  He set us up for needle biopsy. Diagonsis:  scc  hpv positive.  Now we look for primary.  Lymphnode tumor about 2.5 cm.

Now we set up for triple endo to find primary but they abort due to a funky stress test and of course has been on blood thinners for a year.  Now we finally get a PET and as the ENT suspected, found it in right tonsil. 

Now, this week coming up have appt with both the radiation oncologist and the medical oncologist.  Have not idea what to expect, they are talking radiation with some chemo.

Surgical removal of the tonsil has been pushed aside for now due to the blood thinners he takes and  has been on for over a year.  He has a stent in the LAD and surgery would be a tough one. 

Staying positive, ENT said we would certainly be planning our vacation five years from now...... Any suggestions?  We have acess to some of the best, Dana Farber, Mass General...

So, after our Appts on Mon and Tuesday I will be back with questions and maybe some info to share.   And all of you reading this because your in the same boat- my prayers and good thoughts for all you.

 

Pat

 

 

hwt's picture
hwt
Posts: 1950
Joined: Jun 2012

Welcome, I think you have found the best site on the internet for first hand information. Just starting out, I suggest you get a calendar if you don't already keep one, write down all the questions for doctors to take to appts. and if you can, take an extra set of ears with you to your appts. in addition to yourself and husband.

Prayers that your husband's journey is not a difficult one. I tackled tx with an attitude of "take it as it comes and deal with it". You can read and dread all of the side effects that you see on the internet but your husband won't experience all of them and the ones he does will come in varying degrees. No point in fretting over things that may not come to be. 

CivilMatt's picture
CivilMatt
Posts: 2979
Joined: May 2012

Pat,

Any Suggestions?  Hawaii is nice!

I felt a lump, had a needle biopsy, was scc hpv+, found primary at base of tongue, surgery, radiation & Erbitux.  We (H&N clan) have a variety of diagnosis, but in general end up with similar treatments.

You are probably in the “my head is spinning” mode currently, but things will calm down as your plan becomes clear.  There are obvious bumps ahead which we can detail in real life terms when needed.

Check out the Superthread at the top of the page, just skim it for now, it is full of good information.

Again, welcome,

Matt

phrannie51's picture
phrannie51
Posts: 3743
Joined: Mar 2012

Glad you started a new thread. 

It looks like your man is getting right into battle....good.  The Oncologist will probably explain which chemo he's going to use, and why....possible side effects, etc etc.  The radiologist will be setting him up for a mask making appointment, and probably explain how radiation works, why they do it in conjuction with chemo etc etc.  Take notes....and take a list of any questions you want answers to that don't get covered.

If you want to find stuff out on the internet, then I want to tell you to just come here....don't go looking around "out there"....much of what you'll see is old and outdated....and it has the propensity of scaring everyone who ventures out there, to death....for no reason other than it's hard to unforget bad stuff (untrue or not).  I learned my lesson right away, about the first week I was diagnosed....what a relief to find this board where information is up to date.

The treatment he's about to go through isn't a cake walk....but it most certainly is doable (as you will see from the scores of folks here)....When you're on the front end of the tunnel looking in, everything looks dark and frightening....a person gets dumped in a land where they don't know the language or the customs....but you will have us at your side guiding you as you get through this tunnel....and cheering you on as you come out the other side.  It's going to be ok....really....really...really.

p

PS...here's a question to put on your list that I'm sure might not get brought up....ask both the Onc and the Rad doc about Mugard....it is a protecterant for mouth sores during radiation.  It is a new product (well new last year when I had treatment)....the best is to start it the day he starts radiation....most docs don't bring it up till mouth sores are already started.  It was a god send to many of us on here.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I went through STGIII Tonsil Cancer (right side), with a lymphnode as a secondary...HPV+.

 

Sixteen weeks of four types of chemo, 35 days of radiation, after having the tonsils taken out...

 

As mentioned, it's a rough club to belong to, but very doable, and very survivorable. Many here have went through what you are about, and came out the other end with minimal long term side effects..., other than maybe a bit abi-normal.

 

I went through mine, January - June 2009..., all scans have been good since.

 

Check out the SuperThread, and keep the Googling to a minimum, or at least realize that there is a ton of old info out there, most not taking consideration to HPV derived cancer.

 

Best,

John

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi PatMac,

Sorry to see you join the club.

My case was similar in that I have cardio vascular disease. I've had two heart attacks, bypass surgery and stents as well since 2007. The 2nd heart attack and stents was last October. I was diagnosed with SCC last November. Tx N2b MO Stage IV HPV+

Yes, they have to be very careful how they approach treatment, surgeries etc. A second opinion at a CCC is highly recommended. Heart disease presents complications that need to be watched closely. Considering I had three surgeries before treatment started, I did well. The treatment plan took into consideration my heart issues as chemo can be very hard on the heart. 

Regardless, it's brutal but you'll make it through. Just have a good "team" of doctors behind you. It's imperative, especially in your situation. I'm 5 months post treatment, NED and doing well. I was treated at Johns Hopkins. 

Here is a link to the top cancer centers. http://health.usnews.com/best-hospitals/rankings/cancer   You mentioned Dana Farber and they're one of the best. 

Positive thoughts and prayers

"T"

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

 

I like to jump in with everyone else and say welcome to the family. Here you will find a lot of help and support with all difference type of H&N cancers. I am sorry that you had to find CSN this way but I am glad that you are here. God bless and keep posting.

 

Hondo

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

pat, just want 2 say welcome but wish u didn't need 2 b here.  will be keeping u and hubby n my prayers.  pls keep us posted on his progress.

dj

cureitall66's picture
cureitall66
Posts: 863
Joined: Aug 2012

Welcome Pat! Sorry that you had to search the internet about that ugly word. But, you found yourself in a great place. This forum is much different than any other. The people on here treat you as if you are family. Everyone tries to help everyone in one way or another and as often as they can be on here. It's a nice feeling knowing someone on here knows what your going through and can help you along the way.

My loved one (Male-age 52) dx: Aug 2012 with BOT w/ 2 lymph nodes involved (same side), HPV16+, Stage IV. Tx: 7 wks Rads, 7 wks Chemo (Carboplatin & Paclataxel), no surgery. Started his tx Oct '12 and ended Dec '12. He needed a feeding tube half way through. It was his choice to get one in the beginning and he opted to try without it. Lost too much weight, he had no choice but to get it in. Drank plenty of Ensure, Boost, and 2.0 to get him through it. It was certainly tough, but very managable. He also had cardiac disease to contend with as well. A heart attack in '05 and triple bypass in '07. His tx center was highly attentive with this issue and his tx. All went well.

Now that we are 9 months out from tx, life is getting much better. The physical part has come along, with some minor aches in the neck, shoulder and upper back (most likely from radiation tx). Gained a little weight back. But, he looks and feels good and this is also good for his heart. The mental is as well as can be expected...we still have our days. But, we're in this together...so no one fights alone. The only thing we are contending with lately are the canker sores that pop up and sometimes more than a couple at a time. According to our tx facilty, this too, is a gift of tx.

You will find this forum very helpful. I hope you stick around and give us updates and if you need advice....someone is usually around here to help out.

~C

denistd's picture
denistd
Posts: 505
Joined: Apr 2009

Was there a heart attack involved? I had a quad bypass in May of 2008, no heart attack just warning pains, got to hospital and they found the blockages and took me into the OR and did the procedure. Had a TIA in December of 2008 and had surgery on my carotid artery. March 2009 cancer of the larynx, had 3 shots of high dose cisplatin and 35 IMRT's. Had lung surgery a year ago. Heart stood up well, have just had a vascular checkup and all looks good. T had a heart attack, that means there was some damage to heart, correct me if I am wrong here T. I had no damage.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Yes, I had two heart attacks (2007 resulting in the triple bypass and 2012 resulting in stents). I've been very lucky in that the damage was very, very limited in both cases, not penetrating the muscle wall of the heart. How I managed that I have no idea as the blockages were severe in both cases, but I'm very fortunate indeed.

"T"

catfish_58's picture
catfish_58
Posts: 124
Joined: Feb 2013

Hey Pat,

    Glad you found this site to help you out.I had a mass that was found under my left ear,Did 2 needle biopsies on the mass and both came back neg. for cancer.Had a cat scan done and was told i had cancer and needed to do a biopsie on my tonsil (left one),after biopies it was confirmed that the left tonsil was the primary and the mass had a lymphnode involed,also had a little in right tonsil too.Was diagnosed as SCC,left tonsil,HPV positive,stage III.took 33rads and 7 chemo's of Cisplatin-Total 6 1/2 weeks of treatments,plus before these treatments went through swallowing therapist,dentist for teeth,installed peg for later feeding,made mask,wished i had found this site prior to all this,had no idea of questions that needed to be asked and what to expect.anyway I think there is an excellent thread at the beginning of this site called Superthread (Read only) ~ contributed by Sweetblood22,has a lot of good stuff needed for your questions,as for your hubby it is doable,we have all been through it and have come out a little worn but thankful.Am sending prayers your way can't have enough of those,hollar at us anytime

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Hi Pat,

My husband is almost a year post diagnosis....scc left tonsil stage 4 with one lymph node.  We went to Dana Farber....had Dr. Haddad who is phenomenal.  I can't say enough positive things about Dana Farber.  They are closely connected to Brigham. 

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Rob Stage 4, left tonsil, w left nodes and 1 small node on right. The usual Carbo and Taxol with 35 rads. Rough ride but doing well. Feeding tube as well at 4 weeks in. He had thrush the whole time and just could not eat by mouth. 

He held the couch down for 3 months but is back to work part time. Scans show almost clear, maybe next one we get the NED. The final report came and was even better, but will talk at tumor board and we will find out Tuesday what the plan is. Most likely wait and rescan soon.

You will make it through this with all these friends here and prayer. You will soon join everyone here as a survivor. Best of luck and keep up with everyong here. All have been this route and know a lot of ways to help with everything you all will go through

Sandy

patmac11
Posts: 4
Joined: Sep 2013

First I want to thank all of you for the information and the best wishes.  We finally have a game plan!   We had our appointments with the radiation doctor and the oncologist. The oncologist at  Mass General Hospital Cancer Clinic sent us to a surgeon at Mass Eye & Ear.  He is going to take out the lymphnode ( I think the chain) but leave the tonsil for now.  He's concerned about getting it all.   Then we will start the radiation course that will be approx five days a week for 7 weeks.  We wil also be doing a course of chemo.   It's still scary and a long road but after a few months we have a plan of attack.  We are happy with the doctors on our team.   Now he has to wrestle with the idea of the feeding tube that they want to set up "just in case".  He's not sure he wants that, but I dont see any reason not to have it in case we need it  But, in the end, it's his treatment and he has to choose.   

Thanks again for all the responses and good thoughts.  I wish you all didnt have to know what I was talking about, but it helps not to be alone.

 

Pat

 

phrannie51's picture
phrannie51
Posts: 3743
Joined: Mar 2012

time spent trying to get a game plan....it is a total relief to finally know what it's going to be, huh?  He's getting pretty much the same treatment as so many of us here went through.....35 rads concurrent with chemo....It is scary right now, but it gets less each day....it won't be long before you have the lingo down, and the schedule....and best of all...the light at the end of the tunnel gets visable.

I had a tube put in before I started treatment, too.....I got all the way through radiation without using it....I had adjuvent chemo, tho....and my tube became my best friend....my 1st cousin....LOL.  If he doesn't need it, good for him....but it'll be there if he does.  It's no big deal getting it inserted....about 45 minutes from the time they wheel you in, till you come out.  

This site is here so nobody has to feel alone....finding it was the best part of having to meet cancer.....great friends, and wonderful support.  Stick close, there's always someone here to talk.

p

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

Pat, first welcome...I know this has been a long week for both Of you.  As you move forward please know your never alone and there is nothing you can say about anything and this family on ACC will understand unconditionally.  As a caregiver I can't relate, but I can only imagine that it is not an easy journey for those that are.  it sounds like you now have a game plan and knowing that really helps to process everything.  As this short season :-) continues please keep in touch.  The support on here is huge.  I am so thankful I founds this connection when I started radiation.  There is a wealth of information.

god bless you both...you will get through this....keep claiming the faith and planning that vacation and a celebration!

Christie

CivilMatt's picture
CivilMatt
Posts: 2979
Joined: May 2012

Pat,

Those 7 weeks will fly by quickly once he gets started.

As for the PEG (I had two), it is usually not a big deal to install if needed.

Start getting use to drinking lots of water and swallowing, it will pay off.

Check out the SuperThread for must haves, it is best to be over prepared.

Good luck,

Matt

patmac11
Posts: 4
Joined: Sep 2013

And the battle continues... next stage begins Nov 11th.  Surgery a success and they removed a bank of ten nodes, two being cancerous.  The tonsil cancer is larger than they had hoped, they left it there and we will begin the radiation  on the 11th.  He had his mask done yesterday.  He said it was not bad.  His rad doctor is going to look into getting him Mugard, but in the mean time suggested Biotene.  He is also going to see the oncologist for the feeding tube (just in case) and see what chemo regiman they have decided on.   His spirits are good, glad to finally have the plan in action-it takes so much to lay the ground work and we got derailed a few times.  He ended up having to have a cardiac catheter procedure before  all this to verify to everyone that the heart plumbing was fine and could tolerate the neck surgery.  twice he was tossed off the table before the neck surgery because someone did not like his heart history. That was stressful.  Well He passed just as we knew he would, but they had to see it.  I asked them to tattoo it on his chest for future reference!!  I have read so many of your ideas and suggestions from having been through it and I have a list of them so that I can help him be as comfortable as possible along the way.  And we forge ahead..........

I hope you are all doing well and feeling healthy.  My best wishes to all of you !

 

CivilMatt's picture
CivilMatt
Posts: 2979
Joined: May 2012

and best wishes ti you too

Matt

 

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

glad surgery is over and the plan is set!  once tx starts it will b over quick.  u will b busy 4 the next 6 - 7 weeks and the u will c the lite at the end of the tunnel.  keep us posted on the progress.  can't wait till u ring the (i'm done w/tx) bell.

God bless.

dj

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