CT ok (I think), granuloma

LisaPizza
LisaPizza Member Posts: 358 Member
edited November 2019 in Uterine/Endometrial Cancer #1

I just had my 6 month CT, see below (finished chemo and radiation in 6/2018 for stage 3a). Although the fluid and spot he identified are described as unchanged, this is the first time they've been noted (4th CT altogether). He only mentions the last scan, which makes me wonder about the earlier ones. No growth in 6 months isn't partucularly reassuring as this can be a slow growing disease. On the other hand, some other equivocal findings have come and gone over time. That's the "price" of having imaging. I'd be lying if I said I wasn't a little worried, I have to admit.

 

 

Oddly enough, he also said diverticulosis ... odd because I had a colonoscopy in February without diverticulosis. They do always describe rectosigmoid thickening though, presumed due to radiation.

 

I haven't done my CA125 yet, but it was never elevated before surgery. It'll be drawn next week. My appointment isn't until 11/26. I suppose at the least I won't be dialing down on the surveillance CTs. Deep breaths!

 

"No significant mediastinal or hilar adenopathy. Small fluid in the  mediastinum appears to extend from the superior, transverse  pericardial recess and is unchanged compared with prior study. 

There is a 2 mm solid, calcified RIGHT lower lobe pulmonary nodule (series 3, image 144) consistent with granuloma and unchanged compared with prior study."

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Comments

  • janaes
    janaes Member Posts: 799 Member
    Im not sure what to say. I

    Im not sure what to say. I just remember when i was first done with treatments my doctors both said we dont need to do cat scans unless you have symtoms. I hated that. It was hard. After so long ( i think 6 months) i requested a cat scan cause i felt i just had to know there was no cancer

    Its so hard i hear either way a person chooses to go with knowledge about follow up. My scans have all been clear. I did end up having one other cat scan at the doctors request which was a shock since i had no symtoms. I didnt want to do that one because i was hoping that because i didnt have symtoms i was in the clear. Ended up waiting tell after scan and the results before i could feel comfotable about being NED

    I know yours is a bit different and hope you can just enjoy your days ahead.  

     

  • Armywife
    Armywife Member Posts: 451 Member
    Hugs, Lisa

    I know it's hard to breathe sometimes when we read results or wait for appointments.  I'm impressed that you have been having frequent scans.  I finished treatment in October of 2017 and was told that their guidelines are physical exams every 12 weeks and that symptoms would catch recurrence as quickly as scans, so they wouldn't be scanning.  I lobbied to have a scan at the one year mark and again at the 2 year mark two weeks ago.  With Stage IVB, that has been disconcerting.  I am thankful for NED so far.  Hey, interesting about diverticulosis - my PET scan noted that this time for the first time too!  (I had a CT scan last year and after treatment in 2017 and nothing was noted regarding  intestines.) 

  • Forherself
    Forherself Member Posts: 961 Member
    Scans

    There is a company that does cmplete body scans.   A person can have them without a doctors order, but then the company doesn't follow up.  so the patient brings the scans to the  Family doctors office and the doctor has to go through all the abnormalities found on the scans.  I don't know how old you are, but the older we are the most "stuff" they find on the scans.  Then the problem becomes do we investigate all the things shown.  I had an early stage serous carcinoma.  18 months out I have not had a scan for this reason.  It certainly is part of the diesease, the dealing with the possibility of recurrence.  I am glad to read that it was endometrioid.  And Its good to come and talk about worrying about it here.  We all get it.   Just me, as a nurse reading those results sound pretty normal. 

  • LisaPizza
    LisaPizza Member Posts: 358 Member

    Scans

    There is a company that does cmplete body scans.   A person can have them without a doctors order, but then the company doesn't follow up.  so the patient brings the scans to the  Family doctors office and the doctor has to go through all the abnormalities found on the scans.  I don't know how old you are, but the older we are the most "stuff" they find on the scans.  Then the problem becomes do we investigate all the things shown.  I had an early stage serous carcinoma.  18 months out I have not had a scan for this reason.  It certainly is part of the diesease, the dealing with the possibility of recurrence.  I am glad to read that it was endometrioid.  And Its good to come and talk about worrying about it here.  We all get it.   Just me, as a nurse reading those results sound pretty normal. 

    Thanks! I feel much the same,

    Thanks! I feel much the same, but it really helps to hear it. I'm not panicking by any means, but not totally at ease either, and this is a place I knew would totally understand that.

  • Tamlen
    Tamlen Member Posts: 343 Member
    PET?

    Lisa, I'm sorry your scan has resulted in worry. So you have CT scans instead of PET? That's interesting, because my onc relies on PET and has only done a CT after surgery and then once when she wanted more detail about something that worried her on the PET (turned out i had an infection, nothing else). I know from the two CTs I had that they show a LOT of potentially worrisome things that don't necessarily turn into something bad. My onc then used the PET and CT together to get a full picturre. Have they said what they plan to do with the info about the tiny lung nodule?

    Also re: diverticulosis. That showed up on my last scan 6 months ago and also the scan I just had. It was the first time. I raised it with my onc because I'd had a clear colonoscopy and she waved it off, saying it probably wasn't diverticulosis and was more likely to be scarring from surgery and that I don't even need to think about it unless I start getting symptoms of diverticulosis.

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    I had a PET last year and

    I had a PET last year and just had my CT scan. I have a 2mm nodule in the left lower lung and it's been there from the beginning. The PET didn't show any issues with the nodule and it hasn't grown over the years. I've had pneumonia 3-4 times as a child and was hospitalized, and also have had bronchitis quite a few times. I also have asthma. The dr said those issues are probably the cause of the nodule, and since it didn't show anything on the PET either, they weren't worried. 

    The diverticulitis finding came during the PET for me. I've never had an issue, and the Dr said it was very mild.

    I had fluid at one point but that resolved and was felt to be from surgery/treatment. Can you ask for a PET?

    I was 3a, endemotroid as well. The dr said at one point they used to do a lot of scans and then went the other way and did scans only if a symptom arose. Now the guidelines indicate more surveillance again but either 6 months or 1 year for CT, and a PET if there seems to be an issue.  So you might ask.

    My CA 125 was only 12 before surgery so not really accurate for me either. It has been 5 for the last few checks. It's funny, but I think I get more anxious for the CA 125 then the CT scan.

  • Forherself
    Forherself Member Posts: 961 Member
    I go to bed and think about

    the posts I read.  Since you have a new case of diverticulosis, maybe you should request a copy sent to the gastroenterologist who did your colonoscopy.  And make an appointment to see if there is anything you should be doing to protect your bowel.   Doesn't hurt to have lots of docs familiiar with your case. 

  • Fridays Child
    Fridays Child Member Posts: 277 Member
    Thanks for the update

    Lisa, sorry to hear that your scan raised a concern, but I hope everything is okay.  You had mentioned the microscopic colitis (did I  remember that right?) - could that be related to the diverticulosis?

    My first CT, for hip pain  two years after surgery, indicated mild diverticulosis, as did my colonoscopy and every CT since, although I've never had symptoms.  They said most people have it to some degree as we get older.

    My oncologist has ordered a number of PET scans which are denied by insurance so I have CTs every three months to monitor the remaining lesions.

    Good luck, and I hope everything is okay!

     

     

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    Tamlen said:

    PET?

    Lisa, I'm sorry your scan has resulted in worry. So you have CT scans instead of PET? That's interesting, because my onc relies on PET and has only done a CT after surgery and then once when she wanted more detail about something that worried her on the PET (turned out i had an infection, nothing else). I know from the two CTs I had that they show a LOT of potentially worrisome things that don't necessarily turn into something bad. My onc then used the PET and CT together to get a full picturre. Have they said what they plan to do with the info about the tiny lung nodule?

    Also re: diverticulosis. That showed up on my last scan 6 months ago and also the scan I just had. It was the first time. I raised it with my onc because I'd had a clear colonoscopy and she waved it off, saying it probably wasn't diverticulosis and was more likely to be scarring from surgery and that I don't even need to think about it unless I start getting symptoms of diverticulosis.

    Thanks, that's interesting.

    Thanks, that's interesting. Even the CT is cosidered optional, I've not seen PETs done for surveillance in this cancer. I know they're even more expensive than CT, and a lot insurance companies won't pay for them without particular justification. I suppose she may do one to further evaluate, but honestly I suspect they will just repeat in 6 months, possibly less, and not do anything else unless it changes. I wonder if 2 mm is even big enough to reliably depend on PET. But I'm sure your doc chose CT based on your particulars.

     

    I was also thinking that it's really just radiation changes and not diverticulosis. It amazes me how subjective radiology reports are. I wouldn't think I'd develop diverticulosis in just 9 months.

  • LisaPizza
    LisaPizza Member Posts: 358 Member

    I had a PET last year and

    I had a PET last year and just had my CT scan. I have a 2mm nodule in the left lower lung and it's been there from the beginning. The PET didn't show any issues with the nodule and it hasn't grown over the years. I've had pneumonia 3-4 times as a child and was hospitalized, and also have had bronchitis quite a few times. I also have asthma. The dr said those issues are probably the cause of the nodule, and since it didn't show anything on the PET either, they weren't worried. 

    The diverticulitis finding came during the PET for me. I've never had an issue, and the Dr said it was very mild.

    I had fluid at one point but that resolved and was felt to be from surgery/treatment. Can you ask for a PET?

    I was 3a, endemotroid as well. The dr said at one point they used to do a lot of scans and then went the other way and did scans only if a symptom arose. Now the guidelines indicate more surveillance again but either 6 months or 1 year for CT, and a PET if there seems to be an issue.  So you might ask.

    My CA 125 was only 12 before surgery so not really accurate for me either. It has been 5 for the last few checks. It's funny, but I think I get more anxious for the CA 125 then the CT scan.

    Thanks, that's reassuring! We

    Thanks, that's reassuring! We are such twinsies :) 

  • LisaPizza
    LisaPizza Member Posts: 358 Member

    Thanks for the update

    Lisa, sorry to hear that your scan raised a concern, but I hope everything is okay.  You had mentioned the microscopic colitis (did I  remember that right?) - could that be related to the diverticulosis?

    My first CT, for hip pain  two years after surgery, indicated mild diverticulosis, as did my colonoscopy and every CT since, although I've never had symptoms.  They said most people have it to some degree as we get older.

    My oncologist has ordered a number of PET scans which are denied by insurance so I have CTs every three months to monitor the remaining lesions.

    Good luck, and I hope everything is okay!

     

     

    Supposedly the microscopic

    Supposedly the microscopic colitis doesn't really cause changes on imaging.  They call it microscopic colitis because they can only see it under the microscope on biopsy. But who knows, it's also not fully studied or well understood. 

  • LisaPizza
    LisaPizza Member Posts: 358 Member

    I go to bed and think about

    the posts I read.  Since you have a new case of diverticulosis, maybe you should request a copy sent to the gastroenterologist who did your colonoscopy.  And make an appointment to see if there is anything you should be doing to protect your bowel.   Doesn't hurt to have lots of docs familiiar with your case. 

    Thanks, I may email her. I

    Thanks, I may email her. I have an HMO, so she already has access, but I doubt she's notified to look. I do have a GI because I have another thing called microscopic colitis. She's already seen my prior CTs which were read as rectosigmoid thickening consistent with radiation. 

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    Armywife said:

    Hugs, Lisa

    I know it's hard to breathe sometimes when we read results or wait for appointments.  I'm impressed that you have been having frequent scans.  I finished treatment in October of 2017 and was told that their guidelines are physical exams every 12 weeks and that symptoms would catch recurrence as quickly as scans, so they wouldn't be scanning.  I lobbied to have a scan at the one year mark and again at the 2 year mark two weeks ago.  With Stage IVB, that has been disconcerting.  I am thankful for NED so far.  Hey, interesting about diverticulosis - my PET scan noted that this time for the first time too!  (I had a CT scan last year and after treatment in 2017 and nothing was noted regarding  intestines.) 

    I was surprised that she did

    I was surprised that she did scans every 6 months too.  She did say that we couldn't rely on CA125 in my case. Still, my early impressions of her were conservative. I do know that the guidelines do say the scans are optional with advanced disease, rather than not indicated at all. I have mixed feelings about it for sure ... hard to live without, hard to live with!

    "Follow-up/Surveillance

    • Non-Fertility-Sparing Treatment

    Imaging should be based on symptomatology and clinical concern for metastatic disease.

    For patients with treated FIGO stage III-IV disease optional chest/abdominal/pelvic CT every 6 months for the first 3 years and then every 6–12 months for the next 2 years."

  • LisaPizza
    LisaPizza Member Posts: 358 Member

    Scans

    There is a company that does cmplete body scans.   A person can have them without a doctors order, but then the company doesn't follow up.  so the patient brings the scans to the  Family doctors office and the doctor has to go through all the abnormalities found on the scans.  I don't know how old you are, but the older we are the most "stuff" they find on the scans.  Then the problem becomes do we investigate all the things shown.  I had an early stage serous carcinoma.  18 months out I have not had a scan for this reason.  It certainly is part of the diesease, the dealing with the possibility of recurrence.  I am glad to read that it was endometrioid.  And Its good to come and talk about worrying about it here.  We all get it.   Just me, as a nurse reading those results sound pretty normal. 

    They definitely show "stuff."

    They definitely show "stuff." I haven't even mentioned the bladder thickening that was read once, the vague area on the pancreas that was read once, my little collection of kidney cysts, small pelvic fluid that is usually there, and random stuff like an external pelvis (normal variant in kidney anatomy) that was read once but not the other times, and "multilevel degenerative changes in the spine." i.e. I'm getting old :) This disease makes me happy to turn 51 in a few months instead of begrudging it (well, just a little ;)

  • MoeKay
    MoeKay Member Posts: 476 Member

    Thanks for the update

    Lisa, sorry to hear that your scan raised a concern, but I hope everything is okay.  You had mentioned the microscopic colitis (did I  remember that right?) - could that be related to the diverticulosis?

    My first CT, for hip pain  two years after surgery, indicated mild diverticulosis, as did my colonoscopy and every CT since, although I've never had symptoms.  They said most people have it to some degree as we get older.

    My oncologist has ordered a number of PET scans which are denied by insurance so I have CTs every three months to monitor the remaining lesions.

    Good luck, and I hope everything is okay!

     

     

    Testing: The Good, The Bad, the Ugly

    Hi Lisa, 

    What does your gynecologic oncologist have to say about the CT results?  If he/she is comfortable with the results, and if you have no symptoms, I would file the report away.  As for the diverticulosis, I agree with Forherself that sending a copy of the report to your gastro is a good idea.  Maybe you have diverticulosis and maybe you don't.  I think it's important to note that research suggests that about 35% of people age 50 and younger have diverticulosis, while about 58% of those over 60 have it.  See:  https://www.niddk.nih.gov/health-information/digestive-diseases/diverticulosis-diverticulitis/definition-facts.  It would be interesting to hear what your gastro's take is on the results of the CT as it relates to the diverticulosis finding. 

    I know imaging can have a valuable place in the first few years after treatment.  However, as you know, the downside is all sorts of incidental findings that in many cases are nothing of concern, but can provoke some degree of anxiety.  For example, in 2014 I had to have an MRI of my kidneys because of blood in my urine.  The incidental finding from that test was a suspected "cavernous hemangioma" of my liver.  Sounded pretty ominous to me at first, but it really is nothing but a benign tumor of the liver made up of blood vessels.  A 2018 MRI showed that it was still there, but that radiologist reported it as a little smaller than four years earlier.  I've come to believe over the past 20 years since my endometrial cancer diagnosis that as long as you do tests, in the majority of cases you will have incidental findings. 

    Best of luck to you, Lisa!  I hope your doctor agrees that the results of your report are perfectly fine!!

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    MoeKay said:

    Testing: The Good, The Bad, the Ugly

    Hi Lisa, 

    What does your gynecologic oncologist have to say about the CT results?  If he/she is comfortable with the results, and if you have no symptoms, I would file the report away.  As for the diverticulosis, I agree with Forherself that sending a copy of the report to your gastro is a good idea.  Maybe you have diverticulosis and maybe you don't.  I think it's important to note that research suggests that about 35% of people age 50 and younger have diverticulosis, while about 58% of those over 60 have it.  See:  https://www.niddk.nih.gov/health-information/digestive-diseases/diverticulosis-diverticulitis/definition-facts.  It would be interesting to hear what your gastro's take is on the results of the CT as it relates to the diverticulosis finding. 

    I know imaging can have a valuable place in the first few years after treatment.  However, as you know, the downside is all sorts of incidental findings that in many cases are nothing of concern, but can provoke some degree of anxiety.  For example, in 2014 I had to have an MRI of my kidneys because of blood in my urine.  The incidental finding from that test was a suspected "cavernous hemangioma" of my liver.  Sounded pretty ominous to me at first, but it really is nothing but a benign tumor of the liver made up of blood vessels.  A 2018 MRI showed that it was still there, but that radiologist reported it as a little smaller than four years earlier.  I've come to believe over the past 20 years since my endometrial cancer diagnosis that as long as you do tests, in the majority of cases you will have incidental findings. 

    Best of luck to you, Lisa!  I hope your doctor agrees that the results of your report are perfectly fine!!

    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.

  • Fridays Child
    Fridays Child Member Posts: 277 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.

    Me, too!

    Much rather  read it first so I know what to ask.  I've been blindsided once and don't  really want to do that again.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    It is all so confusing

    I have CT scans every 6 mos. The last one identified the cancer in vagina in what appeared to be a liquid sac. I also have a nodule in lung which has been there forever and has not changed and also said had diverticula. The doc removed the sac/tumor in OR as bleeding from Eliquis had to be checked. Never has a PET been mentioned as I never have any symptoms. Just lucky the CT found it. A CT also found my blood clots 2 years ago.

  • Tamlen
    Tamlen Member Posts: 343 Member
    LisaPizza said:

    Thanks, that's interesting.

    Thanks, that's interesting. Even the CT is cosidered optional, I've not seen PETs done for surveillance in this cancer. I know they're even more expensive than CT, and a lot insurance companies won't pay for them without particular justification. I suppose she may do one to further evaluate, but honestly I suspect they will just repeat in 6 months, possibly less, and not do anything else unless it changes. I wonder if 2 mm is even big enough to reliably depend on PET. But I'm sure your doc chose CT based on your particulars.

     

    I was also thinking that it's really just radiation changes and not diverticulosis. It amazes me how subjective radiology reports are. I wouldn't think I'd develop diverticulosis in just 9 months.

    Allergic to the CT contrast

    I'm allergic to the iodine in CT contrast, so when I have a CT it's really only useful for above the waist. Maybe that's why I seem to be getting PETs instead of CTs like the rest of you and why my insurance hasn't denied me.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 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.