Good news and bad from CT Scan and PET Scan

bdee
bdee Member Posts: 304
edited March 2014 in Colorectal Cancer #1
I had a CT Scan and PET Scan last week and the results are in. Some good news, some bad.
Six of the seven tumors have shrunk by 1/2 or 1/4 of a centimeter. One tumor has grown about 1/4 of a centimeter. My CEA was down to 2.6. I won't have to have radiation now, but the doctor wants to keep that as an option if the tumors start growing again.
I was told I could not have any abdominal operations ever again, not even a hernia repair. My cancer is spread out so much in my abdomen, that I wouldn't heal from a surgery. I will have to have chemo for the rest of my life. Right now the chemo isn't too bad since it is only 5FU and Avastin, but if the tumors get bigger or more start forming, there are three other chemo drugs that can be added. I'm just not a good candidate for the other three drugs right now because of my reaction to Oxy the first three months of my chemo treatments.
So that's how it stands for me now.
For those of you who don't know my story, I have been diagnosed with Stage IV Colon Cancer from mucinous adenocarcinoma. I have never had a colonoscopy or any of my colon removed. My cancer started from a cyst on my appendix and the 10 pounds of mucous it secreted spread cancerous cells throughout my abdomen.

Thanks for all the support and prayers I get from this site,
Debbie

Comments

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #2
    Hi Debbie,you are in my
    Hi Debbie,you are in my prayers and I hope the chemo will do its job to keep everything under control.Please never give up,maybe one day the chemo will shrink all the tumors to nothing,this has happened in the board many times.Take care.Best luck and best wishes to you and your family.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #3
    my thoughts and advice
    Hi Debbie,

    Well, that's good news on your scan. Obviously, you worry about the one that got slightly larger, as I know I would. Definitely it's good that the others have shrunken slightly & that your CEA has gone down!

    I'm surprised to hear you haven't had a colonoscopy. Certainly it is merited and should be done. I can't understand why they wouldn't have done it.

    So far as being told that you could never have any abdominal surgery... has anyone ever talked with you about peritoneal wash (this may also have another name- I wish I knew it), which is a heated chemo bathing of the opened up adbdomen. They can do this in the entire abdominal cavity, as well as in the liver and other abdominal organs. It's an actual procedure where they open you up (or maybe it's even done laporscopically with tiny openings being made?) Dr. Lowy (who was my surgeon for my liver resection) does this at UCSD in San Diego, and I know it's done at several different places in the country, as well, I just don't have the names of others who do it. Hopefully someone else will see this and have more info for you on other specialists who do this procedure. If no one else gives you the info on that, please google it and read up about it. Don't give up, because it probably could be an option for you. If the doctors you have spoken to aren't familiar w/ it, then you need to find one who is! Don't just accept the "you can never have surgery" line. I believe its purpose is for when the cancer has spread outside of organs and is in the abdominal cavity.

    Best wishes to you, and never give up!!

    Hugs,
    Lisa
  • trish07
    trish07 Member Posts: 138
    #4
    Bdee, it is good to hear
    Bdee, it is good to hear from you again, I have been concerned about how you were doing. I don't know if you remember, but my husband also has mucinous adenocarcinoma,started from a tumor on his appendix that ruptured and spread cancerous cells throughout his entire abdominal cavity. Very rare indeed.

    Shrinkage! Excellent! These kind of tumors normally do not respond much ,so that is very good news!

    The Avastin must have made the difference. They tried adding Avastin with my husbands Xeloda(5fu) but he had a very serious reaction to it. For awhile we were able to keep my husbands tumors "at bay" with just the 5fu,it eventually quit working and the tumors began to grow. I'm sorry you were not able to take the Oxaliplatin. My husband did 6 rounds of the Oxy but ct scan showed no change. He is currently on a 3 month chemo holiday. He will be starting Irinotecan in December. Has your Dr. mentioned trying this drug?

    Taking chemo for the rest of your life is certainly not a pleasant thought, my husband will be doing the same. I always tell my husband when we are getting results of ct scans that if it hasn't grown we need to count that as GOOD NEWS and if there is shrinkage we will of course count that as GREAT NEWS!

    I know it is distressing, this "watch and wait" goes on and on, so you keep enjoying your life and going on wonderful trips. It has been 2 years since my husbands diagnosis and I see many more ahead.

    You take good care,

    Trish
  • bdee
    bdee Member Posts: 304
    #5
    lisa42 said:

    my thoughts and advice
    Hi Debbie,

    Well, that's good news on your scan. Obviously, you worry about the one that got slightly larger, as I know I would. Definitely it's good that the others have shrunken slightly & that your CEA has gone down!

    I'm surprised to hear you haven't had a colonoscopy. Certainly it is merited and should be done. I can't understand why they wouldn't have done it.

    So far as being told that you could never have any abdominal surgery... has anyone ever talked with you about peritoneal wash (this may also have another name- I wish I knew it), which is a heated chemo bathing of the opened up adbdomen. They can do this in the entire abdominal cavity, as well as in the liver and other abdominal organs. It's an actual procedure where they open you up (or maybe it's even done laporscopically with tiny openings being made?) Dr. Lowy (who was my surgeon for my liver resection) does this at UCSD in San Diego, and I know it's done at several different places in the country, as well, I just don't have the names of others who do it. Hopefully someone else will see this and have more info for you on other specialists who do this procedure. If no one else gives you the info on that, please google it and read up about it. Don't give up, because it probably could be an option for you. If the doctors you have spoken to aren't familiar w/ it, then you need to find one who is! Don't just accept the "you can never have surgery" line. I believe its purpose is for when the cancer has spread outside of organs and is in the abdominal cavity.

    Best wishes to you, and never give up!!

    Hugs,
    Lisa

    HIPPC
    Thanks Lisa for your encouragement and advice,

    I think the initials in my subject line stand for the heated chemo that can be performed for the first surgery. I have read about it after my initial diagnosis. It is recommended to be performed on the first surgery, but has been performed at other times. I have a friend that had it performed in St. Louis about the same time I had my operation in Little Rock where they just removed my mucous and didn't put in the heated chemo. My friend has since died and I'm still alive and kicking, so that made me think harder before going through it. He was so sick when they put in the heated chemo, had hernia surgery within six weeks of his first surgery and then they started seeing tumors pop up everywhere. He was dead within six or seven months of his first surgery.
    I am not taking this doctor's word on no more surgery, there is a good cancer center here at the University and I will go for a second opinion if it ever comes to that.

    Debbie
  • serrana
    serrana Member Posts: 163 Member
    #6
    good news and bad news
    I agree with Lisa about not taking docs pronouncement of never ever abdominal surgery; if three surgeons told me that, I might believe it.Maybe, but probably not.

    Please consider getting other opinions especially at an NCI Cancer Center.Don't just talk to oncs, talk to the colorectal surgeons and the liver surgeons. THings are moving really fast in this area.....don't give up hope that you will someday be cancer free.

    Please also have your tumors tested for genetic markers. I did and was told that Oxy was NOT the best chemo for me ( this was AFTER I'd done 4 months of it, but they didn't have the test
    then.....it is the T and the ERCCI test); also you want to have the KRAS test so you will know if erbitux might be good for you. There are several others also.

    Research research and research and never give up........
    Blessings for a complete recovery
    Serrana
  • bdee
    bdee Member Posts: 304
    #7
    trish07 said:

    Bdee, it is good to hear
    Bdee, it is good to hear from you again, I have been concerned about how you were doing. I don't know if you remember, but my husband also has mucinous adenocarcinoma,started from a tumor on his appendix that ruptured and spread cancerous cells throughout his entire abdominal cavity. Very rare indeed.

    Shrinkage! Excellent! These kind of tumors normally do not respond much ,so that is very good news!

    The Avastin must have made the difference. They tried adding Avastin with my husbands Xeloda(5fu) but he had a very serious reaction to it. For awhile we were able to keep my husbands tumors "at bay" with just the 5fu,it eventually quit working and the tumors began to grow. I'm sorry you were not able to take the Oxaliplatin. My husband did 6 rounds of the Oxy but ct scan showed no change. He is currently on a 3 month chemo holiday. He will be starting Irinotecan in December. Has your Dr. mentioned trying this drug?

    Taking chemo for the rest of your life is certainly not a pleasant thought, my husband will be doing the same. I always tell my husband when we are getting results of ct scans that if it hasn't grown we need to count that as GOOD NEWS and if there is shrinkage we will of course count that as GREAT NEWS!

    I know it is distressing, this "watch and wait" goes on and on, so you keep enjoying your life and going on wonderful trips. It has been 2 years since my husbands diagnosis and I see many more ahead.

    You take good care,

    Trish

    Thanks, Trish
    It has been a while since I've been commenting. My computer caught the flu and my husband had to do a complete wipe and reinstall everything. It took him a while and I knew I would be posting when the scan results were in.

    My last three CT Scans had my tumors growing so having this one show a shrinkage was really good news. I tell people it is because on our trip to England I drank the "healing" waters in Bath (I really only took two sips because it tasted awful).

    I am so glad your husband is taking a chemo holiday and that his doctors okayed it. My doctor told me yesterday I would never be able to take more than a week off or my tumors would "blow up."

    My doctor told me that because of my reaction to the Oxy, he would wait on any other drugs, but there are three more we can try if the tumors start growing too much.

    Tell your husband to hang in there and take care of him and yourself,
    Debbie
  • bdee
    bdee Member Posts: 304
    #8
    serrana said:

    good news and bad news
    I agree with Lisa about not taking docs pronouncement of never ever abdominal surgery; if three surgeons told me that, I might believe it.Maybe, but probably not.

    Please consider getting other opinions especially at an NCI Cancer Center.Don't just talk to oncs, talk to the colorectal surgeons and the liver surgeons. THings are moving really fast in this area.....don't give up hope that you will someday be cancer free.

    Please also have your tumors tested for genetic markers. I did and was told that Oxy was NOT the best chemo for me ( this was AFTER I'd done 4 months of it, but they didn't have the test
    then.....it is the T and the ERCCI test); also you want to have the KRAS test so you will know if erbitux might be good for you. There are several others also.

    Research research and research and never give up........
    Blessings for a complete recovery
    Serrana

    How are tumors tested for genetic markers?
    Will I have to have another operation? Are the tests usually covered by insurance? So far my insurance has paid for any thing my doctor has ordered, that includes any medicines so if the tests are covered by most insurances, I'm sure mine will cover them. Who would do the tests? My oncologist or another type doctor?

    Thanks,
    Debbie
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #9
    Scan
    It sounds like most of it went in the right direction. I too am surprised that you have never had a colonoscopy. How did they ever find it in the first place. That is something that should be done especially when you are diagnosed with colorectal cancer. I pray for all to start healing for you and that you can get some more options to heal you.

    Kim
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #10
    Praying
    Debbie,

    We'll keep praying for you!

    *hugs*
    Gail
  • trish07
    trish07 Member Posts: 138
    #11
    tootsie1 said:

    Praying
    Debbie,

    We'll keep praying for you!

    *hugs*
    Gail

    No, you will not have to
    No, you will not have to have another operation for them to test for the Kras Mutation as long as the hospital saved specimens of your tumor. If you are being treated at a teaching hospital/cancer center, in all likelyhood they have your specimens.

    Also, your Dr. saying you will NEVER be a candidate for surgery concerns me.

    Debulking is the first line procedure where they remove as many tumors as possible.
    They removed 7 lbs. from my husbands abdomen/ I believe you said that they removed 10 lbs. from yours.

    After that they only do a debulking procedure if the tumors grow to a size that interfers with vital functioning. In the meantime they control the growth with chemotherapy. I would definitely confront your Dr. about "no surgery,Never".

    Trish
  • sfmarie
    sfmarie Member Posts: 602
    #12
    Prayers for you Debbie
    It can be mind boggling to think of a life of chemo. Marie
  • nudgie
    nudgie Member Posts: 1,478 Member
    #13
    I am sooo
    sorry to hear such news, but I will be praying for you every night.
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #14
    1/4 of a centimeter
    Debbie, the growth sounds like it's so small it could just be the person reading it.

    .25 cm = 0.1 inch Sounds like you're holding on. I'll add you to my prayers. :o)

    Diane
  • snommintj
    snommintj Member Posts: 601
    #15
    dianetavegia said:

    1/4 of a centimeter
    Debbie, the growth sounds like it's so small it could just be the person reading it.

    .25 cm = 0.1 inch Sounds like you're holding on. I'll add you to my prayers. :o)

    Diane

    Does size matter?
    You know size isn't the only thing you should consider. I think density is as big a factor as any. It's very hard to determine density with a scan. You should expect density to diminish with size. I would imagine if most of your tumors shrank in size that they also became less dense. The one tumor may have grown in size but is probably much less dense and more susceptible to chemo than a dense tumor.

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