CSN Login
Members Online: 4

Stage 4 Tonsil Cancer-It's back?

donnahamblin's picture
donnahamblin
Posts: 47
Joined: Oct 2011

My husband just informed me that he feels another lump in his neck. His last treatment was 2/28/12 and his last doctor appt was 10/12 where he was NED. He did Chemo and rads but no surgery. If this is back, what are the next steps?????

 

I'm so confused.

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

the ENT as soon as possible.  Since he had rads, there are plenty of enough "future" side effects to fill a book...and this could be one of them.....scar tissue in a node may be the cause.  Like they say here, it ain't cancer till somebody in the know says it is. 

p

katenorwood
Posts: 1801
Joined: May 2012

Hey there !

I was just in a similar position with what my oncs thought was a reoccurrance.  Until they do the tests and biopsy it could turn out to be just scar tissue or inflammed lymph nodes.  It aint cancer until they prove it to be.  I totally get the fear factor, and worse case scenario.....take this one step at a time.  Will be sending positives for a great outcome !   Katie

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

You don't know that it's back.....

When you say he was NED in October, was that just a scope,, PET or CT...?

If he had radiation as part of his original treatment, more than likely what he is feeling is residual scarring, fibrosis, any number of things that totally may not be cancer related at all.

I know it's very easy to presume the worse..., but more than likely it's not cancer.

What's the next steps, easy...folllow-up with your ENT... If he hasn't had a scan within the last six months, request one...request a scope.

Then depending on the results of that.... that is your next step.

Best ~ John

donnahamblin's picture
donnahamblin
Posts: 47
Joined: Oct 2011

Thank you to everyone for your comments. He has a CT scan set up for the 21st and then we meet with the doctor. I feel better knowing that what we are feeling could be a number of things and not cancer. I am so thankful for this site! Fingers are crossed once again and prayers to all!

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I replied to this on my cell....

After reading it, it sounds rather short and and a little to unfeeling.

Definitely not my intent or nature.

Just realize that it is easy to let those bad thoughts in..

But like I said above..., not cancer until they say. I'd be really surprised if it's more than residual and or fibrosis., both very common in the time frame you speak of.

JG

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Let's just say it ...it's always in our head, it's always sitting on our shoulder and when you get an ache, pain or lump it's total mind chaos even if you try soooo hard to not panic and take it easy.  I totally understand, I sooo do.

Now with that said, I was stage III base of tongue with one lymph node dx. October 2011.  Finished tx Jan 2012.  My first PET/Ct scan looked good but showed some hot spots still....docs felt it was just rad residual...next scan was NED...all scans after that looked very good (NED) ..then in Nov 2012 I had a scan that showed 3 spots in my left lung and some granulated glass appearance...then the waiting game...8 weeks I had to wait ....boy was my mind running.  I'm human as they come, I believe in prayer too....yet I found myself anxious as much as I did not want to be. I was truly disappointed in myself for being anxious...but the bottom line is....we are human. 

There were times, not all the time, just moments (I did not tell my wife this of course) I just knew it was bad...then 8 weeks later I get a scan and my results come back as infection!!!!! 

This cancer journey is the absolute toughest thing I have ever been through....I have five young kids (ages 2-14) and they all want me to be around as long as I can....

I said all that to say your husband got the latest and greatest treatment, he was tough enough to take the treatments and he has been followed and monitored well it appears.  Until they say it is cancer, it's something else.  If the worst case scenario were to raise it's ugly head, then he will have surgery and implant a radiation dose directly in the area where the c is and some more chemo and all will be good Sealed In other words he will just open up a big 'ol can of whoop bootie on it again and you will all have a long and happy life.

But there are so many things it could be other than c ...so let's just pray and the 21st is just around the corner...

Best,

Tim

 

NOTE:  I hope all that did not come across as flip bc that was not my intent.....whispered a prayer it's nothing

donnahamblin's picture
donnahamblin
Posts: 47
Joined: Oct 2011

Thanks for your reply Tim. I know you know how scared we both are. Scott had told me after his treatments that if it comes back, he won't have anymore treatments. The treatments were so hard on him as he also struggles with Parkinsons. He is only 53. I am trying to think positive but as you know it's hard to. The c I was 100 x worse than the PD that's for sure. All we have is prayer so that's what we will continue to do. Hope your future remains NED!

donnahamblin's picture
donnahamblin
Posts: 47
Joined: Oct 2011

Skiffen, you could never sound unfeeling! Thank you again for replying. It makes me feel better that there are people out there going through the same thing we are.

Take Care, Donna 

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I know odds are it is NOT cancer, but fear often trumps odds - at least almost all of us know that feeling.  Hoping you don't have to wait long for good news.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I agree- you  don't know it's C. Scar tissue, or perhaps there's a bit of hyper-sensitivity...Know I was concerned about what I thought might be a lump, and then another, early on, but they were just a bit of swellings, or part of what is my new/post-tx neck. Yes, go to an ENT ASAP, but I would not jump to any conclusions at this time.

kcass

sunshine_65
Posts: 15
Joined: Mar 2012

I too am awaiting an emergency pet-scan appointment for possible recurrence of stage 4 tonsil cancer.

8 months out from last radiation, with neck pain and stiffness all around radiated area, skin inflammed (am putting clobetasol on it), and terrible pain. Doctors examined me yesterday and they say it is not fibrosis. They could not feel any lumps either. They said it may be a deep down bacterial infection, or, they said they may never figure out what is causing the pain.  I am not sure whether recurrence is accompanied by these type of symptoms or not. In addition , I have been diagnosed with borderling hypothyroidism, and am taking thyroid replace medication - but both the oncologist and radiology said that my pain is not from that either.

Of course waiting for the insurance company (5 days, usually) to approve the pet-scan is annoying (again) to say the least!

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Sunshine..., while the MD's might say it isn't fibrosis... with the symptoms you are having and this early out. I'd say it's not uncommon to have all of what you describe, and be perfectly normal after reactions to treatment.

Of course I am no MD, and can only speak from experience and observations here..., but the large majority of those here have, are or will go through similar.

For sure have it checked out though..., if nothing else to kill the anxiety (for now), and move onward and upward...

Best ~ John

sunshine_65
Posts: 15
Joined: Mar 2012

Hi Skiffin16--Thanks for your advice and views. I really appreciate all the comments I got. Sometimes I simply do not know where to turn - except to all of you - internet searches can scare the pants off of you. A huge thanks to the HNC group for being there for me.

I have a CT scan scheduled for tomorrow. Radiologist, dermatologist, and oncologist all did not think my neck pain was due to fibrosis. They all seemed to think that my neck tissue was soft (not "wooden") and that it was too soon for me to experience pain from fibrosis.

I also have a concomitant "radiation dermititis" inflammation, redding and scarring on one side of my neck, and a newly diagnosed hypothyroid condition. No wonder I feel chipper. No lumps, they think. So they are stumped, at least until the CT results come in. The waiting (and of course periodic waves of anxiety) are difficult to deal with, as you all well know.

Thanks again.

RogueHorse
Posts: 4
Joined: Jul 2012

hello, I'm just throwing out an idea.  my husband is 2 years out from stage 4 r tonsil cancer, non hpv. about 6 months ago his neck started to get thicker, puffer and more painful. Turns out it was lymphedema caused by the radiation he received.  His lymph nodes weren't draining down his neck properly. He started getting specific massage treatments and a soft compression collar. H has lost inches off his neck, improved mobility and less discomfort.  His neck was hard, and now its softer.  Hoping by the time you get this all is better.

 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

What you mention is very common for those of us that have been through rads...

Though two years out to start having those symptoms is a ways out there compared to most. Most of us start having the "Turkey Neck" of slow to non draining lymphatic fluid fairly early...within a few months and usually last a year or so.

Most of the times the lypmphatic system re-establishes drainage paths.

As for the hardness, scarring, residual, fibrosis...some of that can last for years or partially forever,

Massage has been recommended here many times, and theres a link on the SuperThread that describes the (or a) procedure for doing it.

Many here have also started exercise programs such as Tai Chi that they swear by also...

Best & Welcome aboard ~ John

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

You have already taken the first important step: seeking support from those of us on the same journey. I hope you can also find support in your "real" world.

The next step is getting a professional opinion. An accurate diagnosis is the best option. It is all right to live in denial for a day or two (everyone does that). But in the long run, denial will only lead to more problems. No matter what the reality of your husband's conditions, there are better paths to follow. Only with knowledge can the best possible path be chosen. Rick.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network