Clear for going on 7 years, but I'm back...

Joel4

First a little history:

In April of 2010 I was diagnosed with SCC unknown primary with golf ball sized tumor on right neck.

i had surgery to include tonsillectomy and 40 or so lymph nodes removed.  Pathology showed one tumor with clean  margins.  Decision was made to not radiate or use chemo, but instead wait and see for the primary to rear its head.  The primary never showed and I received NED report after NED report eventually moving beyond the five year mark.  I thought we had this thing beat.

Flash forward to December 23rd of 2016:

I was actually playing a video game in our living room as my wife was doing some Christmas baking, and the kids were happily buzzing around the house in "holiday mode."  I had some stiffness in my right neck from sleeping in a weird position and was massaging the area when I came plum sized hard mass near the collarbone.  I knew right away that it was cancer and that perhaps that primary was still somewhere in my head and neck spawning off more tumors.  Pretty scary thought since it has now had several years to spread.  My last appointment at the cancer center was almost one year earlier.

I immediately pulled my wife aside and explained what we were looking at, but insisted we put it out of our minds, for our kids sake for a few days and enjoy Christmas.  We leaned on each other and prayed a lot.

On December 27th we went to the Oncolgist, at the Wilmot Cancer Center in Rochester NY, and he confirmed by needle biopsy that it was SCC.  A quick scope showed no primary and scans were scheduled.

A PET showed the tumor, about 4cm, near the right collarbone and nothing else.  They told me they have never seen a patient present with two unknown primaries for the same cancer (SCC Head and Neck).  They drew up a plan for rads and chemo, and now it was time to hurry up and wait.

My beautiful wife suggested that we get a second opinion, and after briefly resisting I agreed, and we went to Sloan Kettering to meet with a team there.  We first met with the Radiation Oncolgist, then the Medical Oncologist, and finally at the end of a very long day, we met with the Surgical Oncolgist.  The Radiation Oncolgist scoped me, found no primary, and agreed to the plan my team at home had proposed,  but said that I should not get a PEG.  The Medical Oncolgist agreed with my Doctor's plan to use Cisplatin daily for seven weeks.

The third visit of the day was a game changer.  Dr. Ganley insisted on scoping me yet again and I knew right away that it was unlike other scopes I had.  I can only describe it as interactive.  He coached me to tilt my head, stick my tongue out, and then up, then right and left.  This seemed to go on forever when he finally said, "I think I found it."  I felt my eyes fill with tears and felt deep down that this primary was finally found and now we can properly attack it.  Doctor Ganley said that the tumor was super tiny and asked if I felt up for a biopsy.  I said, yes, and spent the next several minutes in as much discomfort as I have ever felt.  I had to move my neck and tongue into a very particular position as he attempted to snip enough of the tiny tumor to be properly tested.  After several attempts, he said that he thinks he got a good enough sized chunk to test.  

Several days later, Doctor Ganley called my cell and said that the spot on my lower left tongue base was indeed cancer.  My Doctors were practically in disbelief and I am now a huge believer in second opinions.

Of course this new info would mean an even more aggressive treatment course as I now have disease on both the left and right sides.

On February 3rd I had the PEG installed and on February 13th I started 35/7 rads and weekly Cisplatin.  I ended up getting in 6 of 7 chemo treatments as the nausea made the 7th treatment too risky.

As of this past Friday, I am done with treatment and have rung the bell.  Treatment was not bad until the last week when a switch was flipped and the throat pain went through the roof.  I am presently doing all nutrition through my tube, but am seeing some improvement in my throat.  My faith and wonderful circle of friends and family are getting me through.  I recognize many of you from my stint back in 2010, and was reminded how helpful this community was and is.

Thanks for reading through this long yet condensed story and God bless you all!

 

Chicklette

Joel, I've read your story

 

I think I first saw you posting on another site on a post called "Branchial cleft cyst".   I remember being so happy that you didn't need chemo / radiation and thought you were cured with the surgery.  I'm so sorry it came back to rear it's ugly head.  (It's funny how you feel like you know people just from reading their posts.  I feel like such a stalker now ... :-D ). Anyhow, your story interested me particularly because my husband has the same unknown primary And originally was thought to have simply a branchial cleft cyst.  Turned out to be SCC HPV+ and he will have chemo and rads as soon as he gets his dental work out of the way.

I certainly hope you killed the beast this time and it never shows up again.  I hope you heal quickly from the treatment and get back to "new normal" very soon.

~chicklette~

stevenpepe

It's encouraging to hear your

It's encouraging to hear your second opinion came from Dr. Ganly at Sloan-Kettering. He is my surgeon, as well. He performed 2 surgeries on me. First, the primary tongue tumor and left neck dissection, then the right side of my neck 6 months later when a node was found inflamed. He's very good at his craft and has a wonderful bedside manner. Good luck moving forward. You're in good hands.

Joel4

Chicklette said:

Joel, I've read your story

 

I think I first saw you posting on another site on a post called "Branchial cleft cyst".   I remember being so happy that you didn't need chemo / radiation and thought you were cured with the surgery.  I'm so sorry it came back to rear it's ugly head.  (It's funny how you feel like you know people just from reading their posts.  I feel like such a stalker now ... :-D ). Anyhow, your story interested me particularly because my husband has the same unknown primary And originally was thought to have simply a branchial cleft cyst.  Turned out to be SCC HPV+ and he will have chemo and rads as soon as he gets his dental work out of the way.

I certainly hope you killed the beast this time and it never shows up again.  I hope you heal quickly from the treatment and get back to "new normal" very soon.

~chicklette~

Hmmm, wasn't me on that other

Hmmm, wasn't me on that other post but perhaps just a similar story.

i used to post her regularly in 2010/2011...

will be thinking and praying for both you and your husband.

Joel4

stevenpepe said:

It's encouraging to hear your

It's encouraging to hear your second opinion came from Dr. Ganly at Sloan-Kettering. He is my surgeon, as well. He performed 2 surgeries on me. First, the primary tongue tumor and left neck dissection, then the right side of my neck 6 months later when a node was found inflamed. He's very good at his craft and has a wonderful bedside manner. Good luck moving forward. You're in good hands.

Dr. Ganly is a rock star in

Dr. Ganly is a rock star in my book, you are in great hands!

Chicklette

Joel4 said:

Hmmm, wasn't me on that other

Hmmm, wasn't me on that other post but perhaps just a similar story.

i used to post her regularly in 2010/2011...

will be thinking and praying for both you and your husband.

That just goes to show

I read too much and get confused . There must have been a similar story, though.  Thank you for the prayers.  I will pray for you and your family as well.

swopoe

Prayers for you that you have

Prayers for you that you have beat this cancer once and for all. Sounds like you have been in good hands with that second opinion!