CT ok (I think), granuloma

2

Comments

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    LisaPizza said:

    I don't have any input from

    I don't have any input from her yet, as my appointment isn't until 11/26. I peeked. I know some say to wait and hear test results from your doc, but I would never be able to think of my questions on the spot. It's not like I'm panicking, just not 100% at ease.

    That makes sense. My dr reads

    That makes sense. My dr reads it before I see. She sent results to me with a note that scans were great so I read the test but wasn't concerned about anything.

    I do understand about being blindsided. That happened after my surgery so I always get nervous at each scan.

  • Armywife
    Armywife Member Posts: 451 Member

    Symptoms

    I don’t understand the idea of waiting for symptoms. My regular CT scans found my reoccurrence in peritoneal area. I might not have had any symptoms. I certainly didn’t have any at that point. I would be uncomfortable without regular scans. 

    Exactly!

    I never had any symptoms to begin with, and that's why I kept asking my gyn/onc for scans post-treatment.  I wasn't willing to trust knowing what a symptom might be.  She agreed that with advanced stage, it wasn't unreasonable for me to have a CT each year.  I asked her about the difference between PET and CT, and she said that insurance and especially Medicare don't like to pay for them. She went ahead and ordered the one I just had and insurance didn't fight it, but I think I'll go back to a CT next year.  The report from the PET was so brief, and the reports from the CTs were always more detailed.  (I'm thankful it was brief, don't get me wrong!  But it's more of an unknown and I like the familiar.)  Ladies, do you have any knowledge or thoughts on whether a PET would show colon cancer?  I do have the markers for Lynch but I literally don't have time to have a colonoscopy.  I have to have thryoid/parathyroid surgery soon, as my Hashimotos has converted to Graves disease.  My gyn/onc has ordered my port removed, so that's a surgery.  And I have to have a good bit of periodontal surgery as well.  I'm just so over procedures after the cancer adventure and then the trimalleolar ankle break last year.  Just now out of physical therapy and still not out of pain with that one.  If I could be sure that the PET would have picked it up, I'd feel a little better waiting a year or so.

  • Forherself
    Forherself Member Posts: 1,013 Member
    Armywife said:

    Exactly!

    I never had any symptoms to begin with, and that's why I kept asking my gyn/onc for scans post-treatment.  I wasn't willing to trust knowing what a symptom might be.  She agreed that with advanced stage, it wasn't unreasonable for me to have a CT each year.  I asked her about the difference between PET and CT, and she said that insurance and especially Medicare don't like to pay for them. She went ahead and ordered the one I just had and insurance didn't fight it, but I think I'll go back to a CT next year.  The report from the PET was so brief, and the reports from the CTs were always more detailed.  (I'm thankful it was brief, don't get me wrong!  But it's more of an unknown and I like the familiar.)  Ladies, do you have any knowledge or thoughts on whether a PET would show colon cancer?  I do have the markers for Lynch but I literally don't have time to have a colonoscopy.  I have to have thryoid/parathyroid surgery soon, as my Hashimotos has converted to Graves disease.  My gyn/onc has ordered my port removed, so that's a surgery.  And I have to have a good bit of periodontal surgery as well.  I'm just so over procedures after the cancer adventure and then the trimalleolar ankle break last year.  Just now out of physical therapy and still not out of pain with that one.  If I could be sure that the PET would have picked it up, I'd feel a little better waiting a year or so.

    Decisions

    One of my jobs as a nurse later in my career was talking to paitents abut colonosopy.  The thing people forget is the preventative function of a colonoscopy.  During the procedure they remove growths and polyps that can grow into a cancer.  It is not just a screening test.  And the fact tht you have markers for Lynch means you are more likely to have the adenomatous polyps that turn into cancer.  Having a colonoscpy doesn't take much time. Have you had one before?   A little story.  My husband was a family doctor and I worked for him later in my career so we could talke vacations when we wanted.  A friend of ours was his patient.  I talked to him for 2 years about having a colonoscopy.  He finally said Sue I a am sick of talking about it, I will have one.  He came back after and asked to talk to me.  He said "You saved my life".  He had so many adenomatous polyps that they couldn't remove them all.  He was to repeat in one year.  The Gastroenterologist had told him how lucky he was he came in when he did.  That was 15 years ago and our friend is still fine.  i get all the appointments are tiresom.  I just had to give my talk.  

  • Armywife
    Armywife Member Posts: 451 Member

    Decisions

    One of my jobs as a nurse later in my career was talking to paitents abut colonosopy.  The thing people forget is the preventative function of a colonoscopy.  During the procedure they remove growths and polyps that can grow into a cancer.  It is not just a screening test.  And the fact tht you have markers for Lynch means you are more likely to have the adenomatous polyps that turn into cancer.  Having a colonoscpy doesn't take much time. Have you had one before?   A little story.  My husband was a family doctor and I worked for him later in my career so we could talke vacations when we wanted.  A friend of ours was his patient.  I talked to him for 2 years about having a colonoscopy.  He finally said Sue I a am sick of talking about it, I will have one.  He came back after and asked to talk to me.  He said "You saved my life".  He had so many adenomatous polyps that they couldn't remove them all.  He was to repeat in one year.  The Gastroenterologist had told him how lucky he was he came in when he did.  That was 15 years ago and our friend is still fine.  i get all the appointments are tiresom.  I just had to give my talk.  

    Yes!

    Yes, and thank you!  I had my first colonoscopy at age 47, and did have polyps.  Second one at age 50 and had polyps again.  Third one at age 55, and had polyps too, all removed successfully and was told I could repeat in 5 years.  That will be August of this year, but of course, in between I had the cancer.  I don't dread the procedure at all, but I do have a huge problem with the prep.  My first two colonoscopies I was allowed to use a pill prep and a small bottle of citrate along with a ton of water, and I did fine.  The third one was here on our army post and they would allow me Suprep but only reluctantly, and wouldn't even consider the pill prep.   It was all I could do to gag it down and I just don't know if I can do it again.   My husband just had his recently and did the regular prep, and I literally gagged just watching him drink it. I'm super apprehensive about the gum surgery too, as I don't do well with anything in my mouth.  (Feel like such a wimp saying that but I have a really small mouth.) That and the roster of procedures coming up just has me trying to find a good reason to put it off.  Wonder if the PET shows polyps?  

  • MAbound
    MAbound Member Posts: 1,168 Member

    Decisions

    One of my jobs as a nurse later in my career was talking to paitents abut colonosopy.  The thing people forget is the preventative function of a colonoscopy.  During the procedure they remove growths and polyps that can grow into a cancer.  It is not just a screening test.  And the fact tht you have markers for Lynch means you are more likely to have the adenomatous polyps that turn into cancer.  Having a colonoscpy doesn't take much time. Have you had one before?   A little story.  My husband was a family doctor and I worked for him later in my career so we could talke vacations when we wanted.  A friend of ours was his patient.  I talked to him for 2 years about having a colonoscopy.  He finally said Sue I a am sick of talking about it, I will have one.  He came back after and asked to talk to me.  He said "You saved my life".  He had so many adenomatous polyps that they couldn't remove them all.  He was to repeat in one year.  The Gastroenterologist had told him how lucky he was he came in when he did.  That was 15 years ago and our friend is still fine.  i get all the appointments are tiresom.  I just had to give my talk.  

    Have to 2nd Herself

    Oh boy, you sure have a boatload of heavy duty procedures on your plate, but given your uterine cancer and Lynch Syndrome you really shouldn't try to talk yourself out of the colonoscopy or delay it. 

    Has it been five years since your last one already? You've had polyps? It's usually annually or every other year once they find out you have Lynch. The choice is between dealing one day with the prep or facing the whole nine yards of cancer treatment again with the potential of pooping in a bag for the rest of your life. That's what I tell myself to get through it. And I still prefer it to smashograms! ;-). I'd do it before the other procedures, though, because you wouldn't want the prep on top of recovering from those. Sorry I couldn't come up with something you'd rather hear!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    To scan or not to scan that is the question

    Most all of the insurance companies are focused on minimizing or reducing their imaging expenses no matter what the patient symptoms/diagnosis.

    An issue with doing imaging versus colonoscopy is that if there is a polyp a colonoscopy would be done to remove it anyway. Same issue with Cologuard test. If it comes back positive then colonoscooy. Have you considered a virtual colonoscopy? 

    Lisa, many of us have nodules in our lungs where it is just scar tissue when our bodies have walled off something from an infection (pneumonia).  No simple answers regarding imaging and peace of mind! 

  • Forherself
    Forherself Member Posts: 1,013 Member
    Armywife said:

    Yes!

    Yes, and thank you!  I had my first colonoscopy at age 47, and did have polyps.  Second one at age 50 and had polyps again.  Third one at age 55, and had polyps too, all removed successfully and was told I could repeat in 5 years.  That will be August of this year, but of course, in between I had the cancer.  I don't dread the procedure at all, but I do have a huge problem with the prep.  My first two colonoscopies I was allowed to use a pill prep and a small bottle of citrate along with a ton of water, and I did fine.  The third one was here on our army post and they would allow me Suprep but only reluctantly, and wouldn't even consider the pill prep.   It was all I could do to gag it down and I just don't know if I can do it again.   My husband just had his recently and did the regular prep, and I literally gagged just watching him drink it. I'm super apprehensive about the gum surgery too, as I don't do well with anything in my mouth.  (Feel like such a wimp saying that but I have a really small mouth.) That and the roster of procedures coming up just has me trying to find a good reason to put it off.  Wonder if the PET shows polyps?  

    If they said August 2020

    I would be confident doing it then.  YOU are defintely no wimp.   I can't answer about the PET scan.  My husband just had his and he had a sessile polpy.  Pre cancer and I guess they are flat.  

  • MoeKay
    MoeKay Member Posts: 493 Member
    Armywife, I would get the colonoscopy if I were you

    Given your history of polyps, I would get the colonoscopy on schedule.  I have a friend who was diagnosed with stage 3 colorectal cancer at age 49, when the guidelines did not recommend screening until age 50.  She had no family history.  She had to go through extensive surgery, radiation and chemotherapy.  We were both so happy to see that the age for first screening colonoscopy has been lowered to 45.  Had those guidelines been in effect when  she was 45, she may have been spared a whole lot of suffering. 

  • Forherself
    Forherself Member Posts: 1,013 Member
    MoeKay said:

    Armywife, I would get the colonoscopy if I were you

    Given your history of polyps, I would get the colonoscopy on schedule.  I have a friend who was diagnosed with stage 3 colorectal cancer at age 49, when the guidelines did not recommend screening until age 50.  She had no family history.  She had to go through extensive surgery, radiation and chemotherapy.  We were both so happy to see that the age for first screening colonoscopy has been lowered to 45.  Had those guidelines been in effect when  she was 45, she may have been spared a whole lot of suffering. 

    History of polyps now

    Since the colonscopy is now PREVENTING bowel cancer, I think they need to ask about a history of adenomatous polyps now.  My husbands family both parents had bowel cancer.  Their kids have all had polyps removed but none have caner thankfully.  They might have had without colonoscopy.  If they just ask about a history of bowel cancer these will be missed.  

  • cmb
    cmb Member Posts: 1,001 Member
    Prep Challenges

    I have Lynch also and am on a 2-year cycle for colonoscopies. I'm due for another one in a month or two. I wish I could do the prep that I did for my first colonoscopy years ago. That included a small bottle of a now banned solution, added to 4 oz of a clear liquid, done twice the evening before. Of course, I had to drink lots of other clear liquids too, but at least the bad tasting stuff was limited to only small amounts. That prep also cleaned me out the best.

    Unfortunately, some people had kidney damage from this solution and so the manufacturer recalled the product. My last two colonoscopies used two different types of prep, both requiring me to drink lots of bad tasting stuff. And most annoying, neither got me as cleared out as the old product had done.

    I've actually used a modified version of the prep before my CT-scans as the contrast solution I drink before the scans cause me to have massive diarrhea. Doing the liquid diet and some prep is the only way I can get through a scan without incident.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    edited November 2019 #32
    And my CA125 is 11.2. Which

    And my CA125 is 11.2. Which is silly to be relieved about, because it's never been high, but you know how it is.

     

    I did have a fractional moment of fear because the first number I saw as I scrolled down was 99 ... but that was the GFR. Ooops!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    LisaPizza said:

    And my CA125 is 11.2. Which

    And my CA125 is 11.2. Which is silly to be relieved about, because it's never been high, but you know how it is.

     

    I did have a fractional moment of fear because the first number I saw as I scrolled down was 99 ... but that was the GFR. Ooops!

    Lisa, it is not silly at all

    Lisa, it is not silly at all to be relieved about your CA125.  While not a good indicator for many of us, we all still want it to be low.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    Just had another CT Monday,

    Just had another CT Monday, everything unchanged. Boy does it make your heart pound opening that report. CA125 remains 12. Appointment is 10/29. Funny that my mammo done same day isn't reported yet but the CT is.

  • cmb
    cmb Member Posts: 1,001 Member
    edited October 2020 #35
    Such a relief...

    It seems that we all dread the CT and Pet scans, but then are so relieved when nothing bad shows up in the report. Good to hear that things are going well for you.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    edited October 2020 #36
    I forgot to mention ..

    I forgot to mention ...apparently my gallbladder is unremarkable ... which is cool since I don't have one ;)

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    There you go, LP....

    Making us laugh again!! I love that!

    I'm thinking of you and saying prayers that everything will be fine!

    xo to All!

    Alicia

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    Glad all is well. I had my

    Glad all is well. I had my normal scan last Nov or Dec then I had 2 in the Spring after my appendix ruptured. Had another last month before my appendix surgery (they healed appendix with antibiotics but I still wanted it gone). The latest scan showed I had another "stable" 2mm lung nodule and apparently its been present all along and it was never mentioned. After I questioned it, two drs looked back and said yup it was there all along. Previously the report said scarring but never said nodule. Reports can be weird.

    Funny about your gallbladder.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    edited October 2020 #39

    Glad all is well. I had my

    Glad all is well. I had my normal scan last Nov or Dec then I had 2 in the Spring after my appendix ruptured. Had another last month before my appendix surgery (they healed appendix with antibiotics but I still wanted it gone). The latest scan showed I had another "stable" 2mm lung nodule and apparently its been present all along and it was never mentioned. After I questioned it, two drs looked back and said yup it was there all along. Previously the report said scarring but never said nodule. Reports can be weird.

    Funny about your gallbladder.

    I had the same thing with

    I had the same thing with this granuloma ... the first time it was mentioned it referred to it being stable from last scan.

  • Forherself
    Forherself Member Posts: 1,013 Member
    edited October 2020 #40
    That is great news

    Thanks again for sharing. I read through this whole thread.  It is amazing the information this dicussion board contains.  

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited October 2020 #41
    LisaPizza said:

    I had the same thing with

    I had the same thing with this granuloma ... the first time it was mentioned it referred to it being stable from last scan.

    Scan commentary

    We've known since my recurrence was found that there was damage to the hip joint. Ten scans later, the last one referred to a "non-displaced fracture, as before."  ??? First time anyone referred to it as a fracture, but clearly referred to it as unchanged.