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CT ok (I think), granuloma

LisaPizza's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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."

janaes
Posts: 787
Joined: May 2016

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's picture
Armywife
Posts: 350
Joined: Feb 2018

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.) 

LisaPizza's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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."

Forherself's picture
Forherself
Posts: 295
Joined: Jan 2019

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's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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.

LisaPizza's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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 ;)

Tamlen's picture
Tamlen
Posts: 229
Joined: Jan 2018

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.

LisaPizza's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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.

Tamlen's picture
Tamlen
Posts: 229
Joined: Jan 2018

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.

barnyardgal
Posts: 241
Joined: Oct 2017

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.

LisaPizza's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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

Forherself's picture
Forherself
Posts: 295
Joined: Jan 2019

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. 

LisaPizza's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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. 

Fridays Child
Posts: 112
Joined: Jul 2019

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's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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. 

MoeKay
Posts: 240
Joined: Feb 2004

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's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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
Posts: 112
Joined: Jul 2019

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.

barnyardgal
Posts: 241
Joined: Oct 2017

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.

Donna Faye's picture
Donna Faye
Posts: 319
Joined: Jan 2017

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.

CheeseQueen57's picture
CheeseQueen57
Posts: 844
Joined: Feb 2016

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. 

Armywife's picture
Armywife
Posts: 350
Joined: Feb 2018

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's picture
Forherself
Posts: 295
Joined: Jan 2019

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's picture
Armywife
Posts: 350
Joined: Feb 2018

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?  

Forherself's picture
Forherself
Posts: 295
Joined: Jan 2019

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.  

MAbound
Posts: 939
Joined: Jun 2016

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
Posts: 570
Joined: Oct 2009

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! 

MoeKay
Posts: 240
Joined: Feb 2004

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's picture
Forherself
Posts: 295
Joined: Jan 2019

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's picture
cmb
Posts: 433
Joined: Jan 2018

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's picture
LisaPizza
Posts: 257
Joined: Feb 2018

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's picture
NoTimeForCancer
Posts: 2661
Joined: Mar 2013

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.

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