An Eventful Day with Not So Good News - Stage II to ???????

hopper52

Had my appointment with the surgeon today. He remarked that the original tumor has shrunken significantly. However,he saw some things on the CT scan in the abdominal area and said it could be carcinomatosis. He had me do a PET scan this afternoon and sure enough, the original tumor has essentially disappeared but my abdominal area lit up like a Boston Red Sox scoreboard. My radiologist remarked that if she had to make a call she would say cancer. The surgeon and the entire Moffitt "Tumor Board" meets in the morning to discuss next steps so I should find out soon what the next step is.

That being said, the areas that lit up on the PET was an area where I had a colostomy incision back in 2003 and an area near it where I have a hernia. Over the past two weeks these two areas have become extremely hard to the touch and painful. I atttributed it possibly being because of the radiation treatments, but now that appears that it may not be the case.

On a bright note there was no evidence of any other organ involvement so I'm really not sure at this point what to make of anything until I hear back from the surgeon. Needless to say I am kind of discouraged right at the present.......going in for a 1 hr appointment to get a surgery date only to have it turn in to a nine hour ordeal with the not so good results.

Has anyone ever heard of carcinomatosis or had any experience with it?

Another bright note.........since I ran overtime I had the chance to meet ericalynn and her husband John while at Moffitt. A blessing to meet someone else from our "class". I pray their appointment went better than mine.

Coincidence or not? When I got home I had a text message on my cell phone from a number I don't recognize and it asked me to look at Psalms 112:7

"He will not fear evil tidings; His heart is steadfast, trusting in the Lord."

Have no clue as to who sent it or why but it came in about the same time I was getting the news from the surgeon this morning.

sammy123

Dearest Hopper-
Try and get
Dearest Hopper-
Try and get a good nights sleep. "Hot Spots" could almost be anything. My husband had a bunch of hot spots and originally they thought it was bad and it wasn't. There are numerous reasons for why certain areas light up. Stay positive and focus on the positive results you received today. I am praying for you. Did you ever get a J-Tube, I thought I remembered you lost a great deal of weight and was wondering if you had one put in yet?

jthomas233

Sending you prayers!
Hopper-

Keep the faith, Brother! I'd need an explanation from someone with alot more initials after their name than that radiologist. We are all pulling for you!

Jeff

Peg59

jthomas233 said:

Sending you prayers!
Hopper-

Keep the faith, Brother! I'd need an explanation from someone with alot more initials after their name than that radiologist. We are all pulling for you!

Jeff

Has anyone ever heard of carcinomatosis or had any experience wi
Yes. My mother had a similar experience many years ago following breast cancer. The area around her bladder lit up like stars in the sky and the doctors had used the term carcinomatosis. In her case it turned out to be a weird scar tissue from a bladder lift she had 10 years before. They later said they didn't know why it reacted like it did but thought the radiation had caused the scar tissue to break down and begin healing again. 2 years later she had a recurrence of the breast cancer in local lymph nodes. A PET scan then showed only those nodes under her arm and there was no reaction around the bladder so what ever it was had corrected itself. As a side note, she lived over 20 years after that and died from a heart attack in her 80s.

Hang in there.

Laura23

Peg59 said:

Has anyone ever heard of carcinomatosis or had any experience wi
Yes. My mother had a similar experience many years ago following breast cancer. The area around her bladder lit up like stars in the sky and the doctors had used the term carcinomatosis. In her case it turned out to be a weird scar tissue from a bladder lift she had 10 years before. They later said they didn't know why it reacted like it did but thought the radiation had caused the scar tissue to break down and begin healing again. 2 years later she had a recurrence of the breast cancer in local lymph nodes. A PET scan then showed only those nodes under her arm and there was no reaction around the bladder so what ever it was had corrected itself. As a side note, she lived over 20 years after that and died from a heart attack in her 80s.

Hang in there.

Don't jump to conclusions
Michael-

Hang in there. Peg's explanation makes sense. Also we just had a false positive on the PET.

Praying for you! Take it one day at a time.

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

BMGky

Prayers for you. Hopefully,
Prayers for you. Hopefully, you'll find out soon just what is going on. Whoever sent the text--how nice. Keep us posted as we are all pulling for you.

hopper52

Peg59 said:

Has anyone ever heard of carcinomatosis or had any experience wi
Yes. My mother had a similar experience many years ago following breast cancer. The area around her bladder lit up like stars in the sky and the doctors had used the term carcinomatosis. In her case it turned out to be a weird scar tissue from a bladder lift she had 10 years before. They later said they didn't know why it reacted like it did but thought the radiation had caused the scar tissue to break down and begin healing again. 2 years later she had a recurrence of the breast cancer in local lymph nodes. A PET scan then showed only those nodes under her arm and there was no reaction around the bladder so what ever it was had corrected itself. As a side note, she lived over 20 years after that and died from a heart attack in her 80s.

Hang in there.

THANKS
Peg,

Thanks for your post. It uplifted me because the areas that lit up on the PET was where I had an incision for a colostomy back in 2003 and next to that I have a small hernia which also turned hard and tender the last couple of weeks. The radiologist said they didn't shoot the radiation in that area but to me it's pretty close. Thanks again....I'll sleep a little easier tonite.

Michael Daniels Was T3N0M0.....Is now ??????
Brandon. FL

birdiequeen

hopper52 said:

THANKS
Peg,

Thanks for your post. It uplifted me because the areas that lit up on the PET was where I had an incision for a colostomy back in 2003 and next to that I have a small hernia which also turned hard and tender the last couple of weeks. The radiologist said they didn't shoot the radiation in that area but to me it's pretty close. Thanks again....I'll sleep a little easier tonite.

Michael Daniels Was T3N0M0.....Is now ??????
Brandon. FL

Sorry to hear you are having
Sorry to hear you are having to wait to findout more. I think the ???????, is so hard. Let us fight but let us know where we are fighting! I found it very interesting how many have had False positive PET results. I will be hoping that is true in your case too, but I'm sorry you have to wait.

unclaw2002

Will keep you in my prayers
Will keep you in my prayers as you wait to hear the results. Keep the faith

Hugs and prayers,
Cindy

NikiMo

hopper52 said:

THANKS
Peg,

Thanks for your post. It uplifted me because the areas that lit up on the PET was where I had an incision for a colostomy back in 2003 and next to that I have a small hernia which also turned hard and tender the last couple of weeks. The radiologist said they didn't shoot the radiation in that area but to me it's pretty close. Thanks again....I'll sleep a little easier tonite.

Michael Daniels Was T3N0M0.....Is now ??????
Brandon. FL

Radiation and swelling
Michael,

First off I will be praying for you today, and I hope that what Peg explained is what is happening in your PET scan. I also wanted to mention that my husband has been having leg pain throughout the radiation treatments. He was diagnosed with bulging discs last year that were causing sciatic pain. At first we thought it was the chemo causing neuropathy, but the radiation oncologist said it might be the radiation. Apparently there have been studies which showed that radiation in one part of the body can cause swelling in other areas of the body, He sighted a study that was done on mice, they radiated the right leg (left leg not in the radiation field) the other leg swelled on the mice. Just mention that because even though the area you mention is outside of the radiation field something could be going on due to the rads.

Again sending prayers up for you!

Niki

Ericalynn

Long Day
Michael,
It was nice meeting you today! Long day today for you it is very tiring waiting wondering and not getting answers. I am so sorry that you did not get your date for surgery today. I will keep you in my thoughts and send good vibrations your way! I am hoping that the tumor board meeting gives you the answers. Keep me posted and I hope that you and John will be running down the halls of the hospital together post surgery.

Your friend Erica (glad we got to meet today)

cher76

Keep you spirits up and
Keep you spirits up and don't be discouraged. I will be praying for good results for you.
Cheryl
Wife of Rickie, Stage IV EC, dx Oct. 2010

JimboC

Scar tissue?
Hey hopper, sorry you're having a bad day. My Uncle had a bad pet/CT recently and on his followup, he found out that scar tissue can sometimes light up on them. Dont sweat this one too much until you have more info. Big positive with the reduction in tumor size. I'll keep you in my prayers. Best of luck!

rose20

Coincidence or not?
Not! I think of how Great our God is. After all He made this world and everything in it. There is a Bible verse that says, "Is there anything to hard for the Lord..." God knows what we need and when we need it most and He can use whatever means He wants, so why not the cell phone!
I'm sure He placed it on someone's heart to send you that text message and what a text that was.
Do as those precious words are saying...Do not fear and just trust in the Lord.
I know that is easier said than done, so I pray that you will hear soon from the meeting of your doctors and until then may God's peace settle upon you.
The book of Psalms in the Bible is such a comfort in trouble times. Start reading in Psalms and let God speak to your heart.

Do you remember these words? "My survivorship is just beginning. I just take it one day at a time and allow God to work through the physicians. Jesus said, "Don't be concerned about tomorrow, tomorrow will take care of itself. Today has enough troubles of it's own." (paraphrase). My wife is a very faithful person and a great source of encouragement and inspiration to me. She told our three daughters, "Well, we've killed one cancer (hers), now we just have to kill another one."

This was posted by you on your "About ME" Page. Sounds like good advice.

THIS WAS IN MY DEVOTIONS THIS MORNING:

“Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand” (Isaiah 41:10).

The God of Abraham, Isaac and Jacob
Is your God
To deliver and strengthen you
As he did your fathers—
To help you,
Uphold you,
Keep you,
Fear not: be not dismayed.
They who do know him as their God
Shall do exploits
And become strong.
He will still your enemies and avengers.
He will make his strength perfect
In your weakness,
For in his hand is all power and might
To do for you exceedingly above all
You could ask or think.
To you he speaks,
“I am with you,
I am your God,
I will help you.”



We will all be praying!!

Donna70

rose20 said:

Coincidence or not?
Not! I think of how Great our God is. After all He made this world and everything in it. There is a Bible verse that says, "Is there anything to hard for the Lord..." God knows what we need and when we need it most and He can use whatever means He wants, so why not the cell phone!
I'm sure He placed it on someone's heart to send you that text message and what a text that was.
Do as those precious words are saying...Do not fear and just trust in the Lord.
I know that is easier said than done, so I pray that you will hear soon from the meeting of your doctors and until then may God's peace settle upon you.
The book of Psalms in the Bible is such a comfort in trouble times. Start reading in Psalms and let God speak to your heart.

Do you remember these words? "My survivorship is just beginning. I just take it one day at a time and allow God to work through the physicians. Jesus said, "Don't be concerned about tomorrow, tomorrow will take care of itself. Today has enough troubles of it's own." (paraphrase). My wife is a very faithful person and a great source of encouragement and inspiration to me. She told our three daughters, "Well, we've killed one cancer (hers), now we just have to kill another one."

This was posted by you on your "About ME" Page. Sounds like good advice.

THIS WAS IN MY DEVOTIONS THIS MORNING:

“Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand” (Isaiah 41:10).

The God of Abraham, Isaac and Jacob
Is your God
To deliver and strengthen you
As he did your fathers—
To help you,
Uphold you,
Keep you,
Fear not: be not dismayed.
They who do know him as their God
Shall do exploits
And become strong.
He will still your enemies and avengers.
He will make his strength perfect
In your weakness,
For in his hand is all power and might
To do for you exceedingly above all
You could ask or think.
To you he speaks,
“I am with you,
I am your God,
I will help you.”



We will all be praying!!

everything that lit up on my Pet was not cancer
Dear Hopper,
Just wanted you to know that when I was first dx'd, my cancer did not light up neither did the positive lymph nodes. I had 10 cms of lights in the colon and that turned out to be you know what, my lungs, thyroid lit up too. But the 4 cm tumor did not. So try to wait it out and hopefully it may have been inflammation from treatment etc. I am only familiar with carcinoid in a friend don't know if that is the same thing. take care and best of luck for some good news and the bible passage is beautiful.
Donna70

TerryV

Waiting with you, Michael
Peg's explanation makes good sense. Hopefully that's how the results will come out. Praying that your doctors find nothing but false positives as they investigate further.

Terry
wife of Nick, Stage 3

unclaw2002

Michael,
I had a friend who
Michael,

I had a friend who had a similar condition which was originally considered carcinomatosis, but was finally diagnosed with Disseminated Peritoneal Adenomucinosis (she had many tumors throughout her abdominal cavity). She traveled to Washington, DC to have surgery and the HIPEC procedure done by a Dr. Paul Sugarbaker at Washington Hospital Center http://www.surgicaloncology.com/ Fast forward – she has been in remission for years now back at work full time and enjoying life with NED.

Her prognosis was fairly grim and the doctors in Texas said there was nothing they could do for her. She traveled to DC and Dr. Sugarbaker operated on her, removing those tumors he could, and also performed the HIPAC procedure, apparently he has performed this combination on thousands of patients. I am not sure what other chemo she had to take but she has offered to speak to you if you would like and talk to you about the procedure and what it was like for her.

She also gave me the link to a website/support network www.PMPPals.org. It is a support network, and the woman who runs it has a whole lot of information, including medical articles and links to other doctors who perform this surgery and use HIPEC throughout the country.
I don’t know how the EC complicates this – I am sure it does, but anyway I wanted to pass this along so you can check things out. I know that MD Anderson in Orlando does this as well as some of the other teaching hospitals throughout Florida.

Good luck and keep the faith. We live in an amazing time.

Prayers and hugs,
Cindy

paul61

I may be a false positive
Michael,

My oncologist tells me that he gets lots of false positives related to scar tissue, inflammation, and various other non cancer related issues. I know this news along with the discomfort you discussed in your abdomen takes your mind in the worst direction, but best to take things one day at a time.

I will be praying it is a false positive.


Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED