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Johnny 5 ~ New Thread...

Skiffin16's picture
Skiffin16
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Joined: Mar 2013

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I am 51, overweight but in otherwise great health. Recently diagnosed w an encapsulated SSC in my tonsil after about 6 - 8 weeks of increased swelling on one side after strep throat inflated both tonsils.

Surgeon staged it at - "stage 2+" (he said the oval-shaped mass measured stage 2 at thickest point of tumor but crossed the stage 3 threshold at its "longest" point, so the oncologist will stage it at 3).

I had a head and neck CAT scan shortly after both tonsils were removed, which showed me clear except for the lymph nodes which were 'lit up' from post surgical recovery according to both my radiation oncologist and my ENT/surgeon who biopsied the tumor. That rendered the neck part of the scan unusable.

My PET scan, which was done almost 5 weeks after the surgery showed almost all zeros across the board - just a couple of results well within what my surgeon described as normal - or readings he said folks without cancer might exhibit.

The sugeon/ENT, who did a stint at Sloane-Kettering, said where most radiation oncologists might still want to radiate the immediate area of the surgery, just to make sure I am clean of cellular level activity. But he "could not make a case for chemo based on the PET scan and post-op blood test results."

He told me if my medical oncologist was insisting on chemo AND rad, I might consider getting a second/independent opinion.

My consult with the radiation oncologist was shortly after the CAT scan, but before the PET scan. And he had already was prepping me for radiation with intermittent chemo to help enhance the radiation's effectiveness - or if the PET scan was negative, at least some course of radiation. That resulted in several dental procedures to pull impacted roots and remove or fill several areas of low-level decay - as well as getting fitted for dental plates, which I now have (not covered by insurance).

Then, when I met with the med oncologist yesterday, he had the direct opposite reaction. The med/onc said I needed several powerful chemo treatments at the beginning, middle and end of what he said would be 'very painful' rad treatments. He and his nurse discussed me getting Emend - a VERY expensive anti-nausea med. Also advised me to begin a combination of activities and Senocot-S for what would likely be very bad constipation, hearing tests to get a baseline because the chemo could cause hearing loss and kidney failure, that I should be prepared to lose my hair (face and head) and probably a significant amount of weight.

The med-rad advising against a feeding tube - unless it looks like I will need it once I begin the treatments, and is also holding off on IV for hydration except before, during and immediately after the 6 - 8 hour applications of chemo. 

My greatest concern, however, is the impact on down time and my voice, since I work in the media and am subject to replacement if I can't produce my material as needed and on deadline. My work in broadcasting, as well as my part-time work as an MC and singer could also be permanently affected by the treatments. Virtually 90 percent of my income as a sole earner in my household is dependent on me using my voice - so this whole situation has me quite on edge.

Any input out there when your doctors have such divergent opinions of post-op cancer treatment? I am already absolutely getting a second opinion, either at Sloane or Yale/Smilow, but I'm wondering if anyone out there went with NO radiation, and just monitored post-op recovery with scans and blood tests??

Long story up to now - I just don't want to put myself in a situation where the "cure" being recommended by the oncologists would push me into possible career-ending and job threatening circumstances. No disrespect to the cancer docs, but they stay in business by recommending and carrying out the most billable treatments possible, based on their concept of ensuring the greatest likelihood of survivability from any cellular-level cancer that MIGHT remain in me.

So what do Vicki and John and anyone else think??

 

D Lewis's picture

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For Johnny 5

Really, it's not about the money. It's about hitting the cancer as hard as they can, because right now, what you have CAN be completely cured... and if it returns, it will be incurable, and will most likely take your life within a couple of short (painful) years.   What you have is very like what I have, and what everybody else here has or had.

The treatments being proposed are the same as all of us have gone through.  We are on the same first name basis with Emend, Zofran, Ativan, Compazine... three rounds of Cisplatin (aka 'the raging bull') and nasty radiation burns to the tongue, throat, neck et al.  Many of us also had the feeding tube.

We all have various long term effects.  Will this change your voice; yes, very likely.  Will this screw with your thyroid, salivary glands, ability to swallow... yes. 

You have a very important decision ahead of you. Some of us here, for various reasons, chose to decline various treatments.  Only you can choose for yourself.  Personally, I chose the path that would most likely result in a complete and permanent cure.

Deb

D Lewis's picture

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You DO have cancer cells wandering around inside you.  Keep reading.  There are more than a few individuals here who were treated for various Stage 1 malignancies with surgery only.  Some of them have already returned with advanced and/or metastatic disease.

Deb

phrannie51's picture

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Start a new thread of your very own...introducing yourself and throwing your questions out there....this is a very knowledgable and supportive group....and will be more than willing to help you out.   You'll get a lot more responses that way.

I had 35 rads and 6 chemos....starting in April of 2012 lasting till August 2012, was back to work in October.  Funny how most of us think about our jobs first...and amazing how many employers get behind the cancer patient.  Like Deb said, you need to make some decisions here.....in my opinion, death would be the real career ender....

p

fishmanpa's picture

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Joined: Jan 2013

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Hi John,

Welcome to the boards. Sorry we have to meet under these circumstances. 

Our stories are quite similar. This will probably be a long post because I want to share my expeience as I feel it will help. Our Dx are a little different I'm Tx N2b MO Stage IV. They were unable to locate the primary site and I had surgery twice to remove tonsils (palatine and lingual) as well as a selective neck dissection to remove the tumors (2@4+cm along with 24 lymph nodes).

 

We're almost at the same point in our journey as I have my first treatment March 13th (simulation rad run with the 1st run the 14th). I'll be getting 35 radiation treatments and 7 chemo infusins (Cisplatin). I had to be cleared by my dentist as well. Fortunately I only had to have 1 extraction. I am aware and prepared to have dental issues afterward but I'm hoping that a very attentive dental hygiene regiment wil minimize this. 

 

I had my appointment with "current" Radiation Oncologist a couple of weeks ago prior to getting the mask made. While we'll be irradiating a broader area in various strengths due to my unknown primary situation, they wouldn't be irradiating my larynx (two seperate laryngoscopies showed everything normal). He was up front concerning throat pain but assured me that my voice would be spared. I will be hoarse and swollen and there will be some swallowing issues to deal with, but he fully expects my voice will return. I would definitely discuss this aspect. Because of the pain I've had with my throat after surgery (pretty bad even now and still on a soft food diet), he's recommending a feeding tube as insurance. 

I have my appointment with my Medical Oncologist a few days into rad treatments. It will take 4-6 hours for chemo infusions. Side effects from chemo drugs can affect hearing, site and other functions so it doesn't surprise me about the tests. Laxitives are a necessity as pain meds constipate you. Anti-nausea drugs are necessary as the chemo will make you sick. Concerning the cost? There are many that are generic and just as effective. There are also programs that help patients get expensive drugs at a discount or free. Ask the cancer social worker about those programs. They say (and its true) that it's easier to stay ahead of the pain and nausea than to play catch up. I take that advice to heart.


What you and I share the most in common is our voices. 
I work in the sales and marketing field in the music industry and I, like you, speak to make a living. I'm am literally the voice of the company, speaking on the phone every day and doing seminars and conferences. I'm also a musician. I played and toured professionally most of my career. I recently came out of retirement and started playing again solo locally. I've been quite successful and I gain much joy from performing, more so than I did when I played full time. So as a part time career, it's been a huge positive in my life as well as lucrative. Like you, I fear the ramifications of radiation. What would I do if I lose my voice? The fear is legitimate and quite real. 

 

I will say three words concerning a 2nd opinion... YES...YES...YES!!!  The very fact that you're asking that question warrants a 2nd opinion and I'm glad to see you're doing it

When I started my journey, I was seeking treatment locally here in Virginia (Winchester). I had an ENT (who did the first tonsillectomy and biopsy), a Radiation Onclogist and a Medical Oncologist. They did not operate as a team. It all seemed disjointed and there was a lack of communication. Everything that happened just didn't "feel" right. Because of that I sought a 2nd opinion at Johns Hopkins which is two hours from me. They are one of the best comprehensive cancer centers in the US (the other hospital by comparison was not an accredited cancer center scoring only 24.7/100 nationally).

I made my appointment and they gathered all the test results from the labs and hospitals prior to my arrival. I had several people from the hospital contact me prior to my arrival making sure everything was in order and asking questions as well as answering mine and addressing my concerns. When I arrived I was taken to an exam room and within minutes an entire "Team" of doctors and specialists came into the room. A Radiation Oncologist, a Medical Oncologist, a Surgical/ENT Oncologist, a Language/Speech Pathologist, an Oncology Nurse Practitioner/Manager and the Coordinator of the center. They all were in sync with my history and records and all knew the results of my tests. I was poked, prodded and examined more in 25 minutes than I was the entire time I was at Winchester. 

Upon review of the radiation treatment, they were opposed because it would have serious ramifications to my voice with potentially irreversable damage to my vocal chords. Based on the size of my tumors, they were surprised that surgery wasn't the first step. I asked these questions when I met with the local doctors and did not get straight answers. I was not told the entire story. At Johns Hopkins, it was an entirely different approach and you could feel the air of confidence in that room. 

I had another incident that took place locally but I've written quite enough ~lol~ Needless to say the decision was a no brainer. Confidence in your "Team" is essential to your confidence and positive mental attitude. Seeking that 2nd opinion will give you peace of mind and voice.

Positives and prayer concerning your journey. This is a great forum and the folks here are amazing. Keep us up to date on what's happening. Best wishes.

"T" 

PS... this would be good to put as a new thread... I think John (Skiffin)is able to do that.

Duggie88's picture

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I want to refer you to what they say in the great state of Oreagn. You know what that is? Me either point being, with the fear of the unknown definately get the second opinion. Better to do it, than to second guess it later. Certainly you want to prepare yourself for every symptom related to the tough task of ridding yourself of cancer. We all react differently to treatments and although I never had to do chemo I did have an extended stay in the operating room and made many friends traveling over 140 daily for radiation and I can tell you it was all worth it. My doctors (the ones I chose to treat me) always quoted me statistics along with their recommendations so I put my life in their hands which resulted in me being able to address you today. I did and still today have excellent health care coverage but never hesitated in doing something that involved an out of pocket expense. All along I knew my trademark voice was going to be jeopardized as it most definitely was but after 3 years it is still making a comeback. My job requires speaking publically and I was scared to death of how people would react both the ones who knew me before my cancer ordeal along with the new ones I met afterwards. I even volunteered for speaking engagements related to my work to build up my confidence allowing me to feel comfortable with whom I am today.  My point is, get rid of the cancer at any cost it makes life worth it. I wish I knew about this website while I was going through treatment, there are some wonderful people  here that can get you through it all.

Enjoy the day…………….I do……………..every one of them

      Jeff

 

 

Posts: 128
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If I were to add anything to this thread it would be to "Pack on the pounds" while appetite and ability is there. I went from 225 lbs to current weight of 141 through the duration of treatment and recovery. Best wishes to you and John as he makes the journey.

Jim

jcortney's picture

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Johnny5, I would like to echo Phrannie's request that you start your own thread so that we can give you and John & Vicki each the personalized attention you deserve.

 

I too had SCC, though base of tongue (BOT) with lymph nodes effected on both sides.  My treatment was the same as John (Skiffin) in that I had Induction Chemo (three rounds of very strong chemo) and radiation.  In fact, I just past 4 weeks of being done treatment.  The purpose of the induction chemo is to eliminate the danger that cell(s) might have escaped from the area where the infection is to another part of the body.  Just the thought of going through all that we all have gone through and ending up having it pop up somewhere else made the decision to go with the direction of my team an easy one.  As for the treatment itself, both Chemo and Radiation are quite challenging.  Not impossible, just difficult.  Once you have a firm treatment plan in place you'll find the suggestions you get from this group is truly remarkable in their ability to make the road as smooth as possible.  They've all been though it and know what works and what doesn't.  If there was ONE thing that I learned going through treatment, and you'll see almost everyone here echo it to you as often as possible is be sure to hydrate.  In the beginning of my chemo I did not pay enough attention to that advice and it caused an enormous amount of unnecessary pain and suffering.

So, I'm really sorry you guys had to wind up here, but your could not have found a better place to be.  Come back often, ask anything and you'll be amazed by the amount of caring, knowledgeable folks that populate this board.

Joe Cortney

Dallas, TX

Skiffin16's picture
Skiffin16
Posts: 8027
Joined: Sep 2009

This is about the best I can do to start a new thread for you, but all replies and comments should work fine from here down I'd presume..

John, I was STGIII SCC HPV+ Tonsils and a lymphnode, I had the tonsils removed, a port inserted in my chest and under went nine weeks of chemo (cisplatin, taxotere and 5FU) in three week cycles.

At that point I had scans also as the tumor (lymhnode) completely dissolved.

My ENT said that he has had a few people opt out at that point... but, he highly recommended that I didn't. That I continue the regime with an additional seven weeks of concurrent weekly carboplatin, and the 35 daily rads....and I did as he recommended with no regrets.

He said while there are no guarantees, his suggestion was to hit it hard, and hopefully hit it only once.

That was going over four years ago, and all scans have been clean and clear since. I have had all of my taste return and around 95% of my saliva.., not on any meds other than Protonix for acid reflux, and all bloodwork is good.

I would highly suggest you seek other opinions and get the additional treatment if suggested..which I would presume will be.

Cancer is not something you want to second quess, nor would I presume you'd want to have to go through this again down the road, or second quess your decisions...

Best,

John

NJShore's picture
NJShore
Posts: 410
Joined: Nov 2012

Johnny 5,

Love your moniker, and nice to meet you! Sorry it's here.

What these kind warriors are saying is true. Everything. The road before you won't be easy, but it's doable, and it's a requirement for life. My husband was diagnosed in October 2012 with Tonsil Cancer. Stage 4, because he had 2 lymph nodes that broke open and he had 'trails' running from the breakage after they surgically removed them. He's sitting next to me, he's just starting to look like himself. He hasn't worked since October, and we are starting to think he might get back to work around Memorial Day at this rate, if he's lucky. He went from 182 lbs, down to 142. He's been out of treatment for 6 weeks, and is now back up to 148 with IV Feedings. He can barely get food down, and it takes lots of time. So when I said Listen in the subject line, I meant listen to these kind people. If my husband had taken them more seriously and concentrated every day he had in preparation, he might not have been hospitalized, he might not have a PICC line in his arm still, and he might have recovered faster.

I am really sorry this happened to you. Given where the radiation will be aimed, chances are your voice will be fine in the future, however my husband today can talk for 10-15 minutes tops at a time and his throat swells. He reacted strongly to treatment, not every one does, and some react much worse... so unfortunately this will be impacting to you and those that love you. Prepare.. you will be glad you did.

Oh and if you have questions, we will be there for you... help you.. support you.. its a great place for support... I couldn't have been the caretaker of my husband and helped him without these wonderful people. Before you know it this will all be behind you.. but it's not a walk in the park.. I am sorry for that.

Good Luck,

Kari

 

CivilMatt's picture
CivilMatt
Posts: 2654
Joined: May 2012

Johnny,

 

Welcome to the H&N forum, it sounds like you (unfortunately) do qualify.

 

I am a typical surgery first, followed by radiation and Erbitux treatments.  Like you , I wanted this intruder gone.  While the primary reason for treatment is to save your life, there is a bit of customization of your treatment plan.  I would simply plead your case with the experts you choose and see what they can come up with.

 

How your body responds to the side effects of treatment can be estimated by any of us, but nobody truly knows how you will make out.  Here’s to a successful treatment.

 

Matt

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