Post Cancer Treatment PET scan and follow-up scare.

OKCnative

I'm a 47-year old male that was diagnosed with SCC BOT HPV+ with neck lymph-node involvement back in June of 2017. Other than the cancer diagnosis I was in excellent health. No prescriptions, no ailments and live an active lifestyle.

 

I completed my treatment in Sept. of 2017. Treatment consisted of 35 daily radiation treatments and three large doses of Cisplatin chemo. I handled the treatment very well considering how brutal it is. No PEG tube and no chemo port. I lost about 30+ pounds (but I had put extra weight on in preparation for treatment). I never threw-up and other than a couple of weeks, I was still fairly active and continued to work and maintain our property. I also never lost my taste buds but I did loose some saliva (getting better each week) and I did suffer from nasty mucous and neuropathy in my legs - which alleviated with increased exercise.

 

Things were looking great going into my first post treatment PET scan. 

 

I did my PET scan on Dec. 19. I thought something might be up when they didn't schedule me for an appointment with my oncologist (to review the scan) until after the Christmas and New Year's holidays and as the last appointment of the day - even though I had called and specifically said I didn't want to go through the holidays not knowing the results. 

 

When my oncologist walked in the room you could tell by her face this would not be good. She literally started the appointment off by telling me "I'm sorry, the PET scan did not turn out like we had hoped." She followed that up by explaining the treatment appeared to have been successful on my throat and all but one neck lymph node, but that "you have a lot of disease in your chest now." The PET scan seemed to show a large mass in my lung and multiple 20-30+ lymph nodes. The oncologist concluded that most likely, just prior to treatment, my SCC BOT metastasized and began moving radically to my chest and lung area.

 

The oncologist explained that the PET scan lights up with cancer AND signs of large infection. However, since I exhibited no symptoms of being sick, having pneumonia or suffering from asthma that it was most likely cancer and that it "was really bad." So bad in fact that it was most likely not curable but hopefully treatable to slow it's growth. My oncologist said a CT scan would need to be conducted to verify the PET scan and to rule out any infection and to give a thoracic team a clearer plan of action.

 

Naturally, we were devastated. 

 

My wife literally collapsed on the floor in tears in the doctor's office.

 

I've never cried or gotten emotionally upset over my cancer diagnosis and I didn't get emotional over this recent bad news. But, I was still overcome with shock and for the next 13 days we lived under the cloud that my number was most likely up and that more treatment was in my future and that future didn't look great. 

 

Close friends and family obviously asked about my PET scan results and we had to share the bad news. We even called MD Anderson and scheduled an appointment to get a second opinion.

 

Just yesterday we met with the thoracic surgeon to go over a CT scan I had done last Friday.

 

To our surprise, the news was excellent. As the thoracic surgeon said, "I don't often get to give good news."

 

Apparently I was suffering from walking pneumonia or similar severe infection when the PET scan was conducted, but i showed no signs of the infection. All of the enlarged lymph nodes in my chest had returned to normal size and the suspect 'tumor' had shrunk by almost 40% in the course of almost a month. Like the thoracic surgeon said, "the findings on this new scan are all GREAT!"

I'm not a religious person, but I am a person of faith. I also have a lot of friends and family that deeply rely on the power of prayer. I don't know what caused this devastating news to be completely reversed, but I'm thankful.

 

I also wanted this story to help give others hope that your path is not set in stone and that great things can happen at any moment.

UPDATE: I added a video - actually mostly just audio from my two doctor's appointments. The lesson here, don't totally freak if you get a negative PET scan result. It may actually not be bad news. Click to see video (youtube).

Mom68

Thank you for sharing

I also had a PET scan, and they found an area in my breast that lit up. Devastating. Lots of tests later and we found out it was negative and only a cyst. I like PET scans so you can see the whole picture, but when they light up in a certain area it is heartbreaking. 

I'm so very very very glad that yours was negative as well. Walk on, happy and cancer free! God Bless you and your family, Mary

lorijeannj

I am so sorry, but very happy

I am so sorry, but very happy for you.  Miracles do happen.

CivilMatt

Then you are NED!

OKCnative,

You have OK in your name, next time lead with I AM ok, but…

What a story to tell. I am very happy with this ending.

Matt

JAL23

Its amazing that we treat the

Its amazing that we treat the PET as the gold standard for finding cancer, but it can produce as many false positives as it does actual positives. We really have a long way to go for more accurate tests. I’d be curious to hear about your original onc’s reaction to the newest CT.

Im sorry you had to go through that - I can’t imagine the feeling. I am sitting here awaiting an early response scan on Friday and crossing my fingers for some good news.

grace2017

Thanks for sharing

I didn't know what to put in the subject line, but considered, "Yikes!", "Amazing!" and "Congrats!"  I can't imagine what those two weeks were like until you got the all clear news.  Really, really puts life in perspective quickly.  What a blessing to have good news after devastating news.  So happy for you and your wife!

OKCnative

UPDATE: I added a video -

UPDATE: I added a video - actually mostly just audio from my two doctor's appointments. The lesson here, don't totally freak if you get a negative PET scan result. It may actually not be bad news. Click to see video (youtube).

ByeByeCancer

Oh my gosh how scary!  So

Oh my gosh how scary!  So glad it all turned out okay!!  I am going to keep your story in mind as my hubs has his first post treatment PET in early Feb.  

rsp

WOW...just WOW...

I just listened to your audio and read your story to my husband (who is 1 yr. out for the same thing as you, and also had the same treatment).  I am speechless, and can't believe what you went through.  I can't imagine the time between your first appointment with the oncologist and the one with the thoracic surgeon...

God bless you and your wife.  I will never forget this chilling story, and pray your news here on in is positive.

Curlyn

That's terrible OKCnative! To

That's terrible OKCnative! To tell you that before they were sure, or had corrolated it with any other tests seems careless at best. I had to respond because it reminded me of my father some years ago. He had a cxr, the doc phoned him and said they found lung cancer but wanted to do a biopsy to make sure. He lived with that, and a cough, for a couple of weeks. When they went to do the biopsy under xray, there was no sign of any lesion whatsoever. We just assumed that the cxr got mixed up with someone else's as there was no sign of the large lesion. Either way, what he went through was totally unnecessary.

katlou

unbelievable

I just watched/listened to your video after reading about your recent experience.  That is just unbelievable but I am very glad that things have turned out well for you.  I have been keeping up with some of your posts and I have to say that you seem to be dealing with everything very well.  You are an inspiration for those of us who may need similar treatment down the road and for those who are going through it now.

Chicklette

I almost cried reading this

i can’t imagine how you must have been feeling through this and thank God the results were a false positive.  This journey is an emotional roller coaster for sure!

Flyinhigh

Question About Misdiagnosis

OKCnative,  I am basically following in your footsteps.  My diagnosis was the same with 40 radiation treatments and 3 Cisplatin completed Nov 20.  The Cisplatin has left the tinnitus, mild drop foot left slde, saliva loss, voice is very hoarse, and fatigue.  All are slowly getting better.  Able to eat just about anything, although saliva and taste are still lacking.  CT Scan was done at about 5 weeks and looked good.  PET in 2 weeks.  I have had congestion in the throat, that seems to be hard for me to clear.  Almost like there is some mucous that I can’t clear.  Also a bit of almost like wheezing that I can clear with a little cough.  Was wondering if you experienced any of those symptoms?  After reading your story, I think I’ll have this checked our prior to having PET.  Not really into surprises, especially when my health is involved. Thanks, wishing you the best.

christine2080

Congrats!

I am happy to hear the results of the PET scan weren’t your real situation. My husband has a diagnosis similar to yours, but he is two months behind. We go for his PET scan on February 14. He had his first PET scan about a week into treatment. Fingers crossed!!

MikefromWinthrop

Just had my post PET at only

Just had my post PET at only 2 months, Friday afternoon, waiting for tomorrow morning to hear results, thank God the patriots take my mind off it for now. Had a BOT and 1 lymph node involved, node was necrotic and tumor there was cystic. Shrank 50% ut stil not under 1 centimeter, so Tuesday they will remove it, unless scan shows it has shrunk even more.

Megs2776

All I can say is, God is

All I can say is, God is awesome!!!!

OKCnative

Flyinhigh said:

Question About Misdiagnosis

OKCnative,  I am basically following in your footsteps.  My diagnosis was the same with 40 radiation treatments and 3 Cisplatin completed Nov 20.  The Cisplatin has left the tinnitus, mild drop foot left slde, saliva loss, voice is very hoarse, and fatigue.  All are slowly getting better.  Able to eat just about anything, although saliva and taste are still lacking.  CT Scan was done at about 5 weeks and looked good.  PET in 2 weeks.  I have had congestion in the throat, that seems to be hard for me to clear.  Almost like there is some mucous that I can’t clear.  Also a bit of almost like wheezing that I can clear with a little cough.  Was wondering if you experienced any of those symptoms?  After reading your story, I think I’ll have this checked our prior to having PET.  Not really into surprises, especially when my health is involved. Thanks, wishing you the best.

Drainage in the back of my

Drainage in the back of my throat has been an ongoing issue for me. I'm outdoors alot and I maintain my 2.5 acres with chickens, guineas, bee hives and a pollinator garden - so, my allergies are always going nuts.

I really notice it in the mornings after it's had all night to settle in the back of my throat. Usually some morning exercise (cardio) and a hot steamy shower loosens it all up. I've learned to just ignore it, but at times it almost feels like my throat is closing up, but it's always just drainage.

MikefromWinthrop

Just got off the phone with

Just got off the phone with doctor, come back in 3 months for next scan, node has shrunk to 1.5 centimeters, and bot is gone. I almost cried, back to deadlifting tomorrow, my life is back.

Andy13460

Great news

I'ts nice to hear you are still all clear, never had a PET scan in Ireland they do a baseline CT scan about 3 months after, Im 32 weeks out and not even sure when or what my next scan will be. Im supposed to go for a checkup every 8 weeks but last appointment was November so I had best call and see if they have missed me out.