Test results. What does "not identified" mean?

Primavera
Primavera Member Posts: 231 Member

I had a radical hysterectomy on April 15. I got some test results, although I'm supposed to wait for final results to discuss with my gyno oncol.

I'm just trying to make sense of some of the reults and a lot of the lines have "not identified."

Tumor site: endometrium, less than 1cm in diameter, on posterior wall, close to fundus.

FIGO stage: IA

Histologic type endomeitrioid carcinoma, NOS

Histologic grade FIGO grade 3 (I knew this already from D&C)

Myometrial invasion: present, 1mm, 6% (myometrial thickness 15mm)

Pelvic nodes examined were negative

Then there's a whole list of things that say "not identified", one item per line: Adenomyosis, Uterine serosa involvement, Lower uterine segment involvement, Cervical stromal involvement, Other tissue/organ involvement.

 

Comments

  • I think it means good news

    When listed on a pathology report, not identified means not found, or negative.  Cheers. 

  • Forherself
    Forherself Member Posts: 697 Member
    So hard to wait

    Congratulations on getting your surgery sooner rather than later.   I think the "not identified" means it is not present.  Which is good.  1A is good.  Grade 3 will probably get you some treatment.  The fundus is the upper part of the uterus which is also good.  There will be other women answering too.  I just know how it feels to wait and wanted to say hi we are here for you.  

  • zsazsa1
    zsazsa1 Member Posts: 547 Member
    Primavera, this sounds pretty

    Primavera, this sounds pretty good.  Small tumor (although high grade), but endometrioid, which is better than serous or clear cell.  No significant myometrial invasion.  I have a feeling that they will do chemo and vaginal brachytherapy, but your prognosis is excellent!

  • Primavera
    Primavera Member Posts: 231 Member

    So hard to wait

    Congratulations on getting your surgery sooner rather than later.   I think the "not identified" means it is not present.  Which is good.  1A is good.  Grade 3 will probably get you some treatment.  The fundus is the upper part of the uterus which is also good.  There will be other women answering too.  I just know how it feels to wait and wanted to say hi we are here for you.  

    Thank you, Forherself

    I guess I'm having to brush up on anatomy. I didn't even think of the "fundus" word. Thanks for always being so prompt to answer.

  • Primavera
    Primavera Member Posts: 231 Member
    unknown said:

    I think it means good news

    When listed on a pathology report, not identified means not found, or negative.  Cheers. 

    Thanks, Donswife48

    I find that term so ambiguous, as if it was something you "couldn't find" but could be there. They do say "negative" when it comes to the lymph nodes. They should use the same words.

  • Primavera
    Primavera Member Posts: 231 Member
    zsazsa1 said:

    Primavera, this sounds pretty

    Primavera, this sounds pretty good.  Small tumor (although high grade), but endometrioid, which is better than serous or clear cell.  No significant myometrial invasion.  I have a feeling that they will do chemo and vaginal brachytherapy, but your prognosis is excellent!

    Doctor said brachytherapy

    ...as a precaution. I asked how many sessions. She said she thinks 3 or 4, but that I had to go see a radiologist oncologist for this and he would tell me. So that's what I'll do. Going to check out this forum for brachytherapy info (that's the only way I knew what it was) and also for Lynch syndrome. She said they tested me and maybe there was something positive because she sent me to a genetics counselor now. Another doctor. I never had my colonoscopy done and so now I'm a bit afraid. I'm 57 already.

    And of course, there's still the lung nodules and the liver cyst...ugh.

    One step at a time, I guess.

  • Forherself
    Forherself Member Posts: 697 Member
    Colonoscopy

    I can comment on that.  One of my jobs used to be talking to patients about going for colonoscopies.   One thing a lot of people don't understand about colonoscopies is that it is not just a screening tool.  It actually helps prevent cancer.  Doctors remove polyps.  Some don't turn  into cancer called hyperplastic, and some adenomatous polyps can turn into cancer.  If you have polyps they will be removed during the procedure.  They will be biopsied. But they are OUT.   If left in they can develop into cancer.   You might not have any.  But the prep is pretty straight forward.  You get very detailed instructions from the gastroenterology center.  Then you are usually given a medication that puts you out.  Not to sleep, you just don't know what is happening.  I had mine at 5pm so they gave me a light dose.  The RN told me I might become aware of what was happening but not experience any pain.  If I wanted to be more deeply sedated they would do it.  I did become aware, but just watched the screen without a care in the world.  That way we were all able to go home a lot earlier.  They worked me in because of my endometrial cancer diagnosis and I was very grateful.  The staff are just the best.   I think the cyst in your liver is a fluid filled pocket.  That is what a cyst is.  Lung nodules are common.   One step at a time.  

  • zsazsa1
    zsazsa1 Member Posts: 547 Member
    Primavera, what I was told

    Primavera, what I was told was that they can do the brachy in 3 higher dose sessions, or they can do it in 5 lower dose sessions.  They believe efficacy is the same, but that the 5 lower dose sessions may have fewer side effects.

    If you never had a colonoscopy, you should ask about having it done NOW, before the radiation.  Even though they're trying to hit only the vagina with the radiation, it can damage surrounding tissue, to, so it's possible that the colonoscopy would be easier to do before the radiation, rather than afterwards.

  • Primavera
    Primavera Member Posts: 231 Member
    zsazsa1 said:

    Primavera, what I was told

    Primavera, what I was told was that they can do the brachy in 3 higher dose sessions, or they can do it in 5 lower dose sessions.  They believe efficacy is the same, but that the 5 lower dose sessions may have fewer side effects.

    If you never had a colonoscopy, you should ask about having it done NOW, before the radiation.  Even though they're trying to hit only the vagina with the radiation, it can damage surrounding tissue, to, so it's possible that the colonoscopy would be easier to do before the radiation, rather than afterwards.

    Brachytherapy

    I had my hysterectomy April 15. It's been two weeks. I don't know when they would do the brachytherapy, though. Do they need six weeks still for healing before they do it? Tomorrow I'll start making appointments. I haven't found anybody yet who didn't have chemo before the brachytherapy.

    Doctor told me I should speak with the genetics counselor/make an appointment before I go for the colonoscopy, but you raise a good point. I couldn't understand well if they needed to repeat tests for Lynch Syndrome or if there was anything inconclusive.

  • Primavera
    Primavera Member Posts: 231 Member

    Colonoscopy

    I can comment on that.  One of my jobs used to be talking to patients about going for colonoscopies.   One thing a lot of people don't understand about colonoscopies is that it is not just a screening tool.  It actually helps prevent cancer.  Doctors remove polyps.  Some don't turn  into cancer called hyperplastic, and some adenomatous polyps can turn into cancer.  If you have polyps they will be removed during the procedure.  They will be biopsied. But they are OUT.   If left in they can develop into cancer.   You might not have any.  But the prep is pretty straight forward.  You get very detailed instructions from the gastroenterology center.  Then you are usually given a medication that puts you out.  Not to sleep, you just don't know what is happening.  I had mine at 5pm so they gave me a light dose.  The RN told me I might become aware of what was happening but not experience any pain.  If I wanted to be more deeply sedated they would do it.  I did become aware, but just watched the screen without a care in the world.  That way we were all able to go home a lot earlier.  They worked me in because of my endometrial cancer diagnosis and I was very grateful.  The staff are just the best.   I think the cyst in your liver is a fluid filled pocket.  That is what a cyst is.  Lung nodules are common.   One step at a time.  

    Thank you.

    I always thought they completely sedated you, as if for surgery? I had never had anything done, so when the D&C happened, I thought I wouldn't wake up from anesthesia. Then for the hysterectomy I kept on asking the anesthesiologist if it was the same kind of thing (because now I knew I could wake up from it...funny). I would be Ok with light sedation.

    The CT scans that I got pre-hysterectomy just said two nodules on one lung, 2mm and 4mm (I think) and then something in my liver "consistent with a cyst; needs follow up later." They haven't told me it is a cyst yet. I figure I can't have CT scans done that often to find out

    I have to see gyno-oncologist again in August. That's 3 or 4 months from now. I'm wondering how it's all going to come together (colonoscopy, brachytherapy, etc.) and if I'll get CT scans done before I see her. Today she just looked at my wounds and discussed results.

  • Forherself
    Forherself Member Posts: 697 Member
    zsazsa1 said:

    Primavera, what I was told

    Primavera, what I was told was that they can do the brachy in 3 higher dose sessions, or they can do it in 5 lower dose sessions.  They believe efficacy is the same, but that the 5 lower dose sessions may have fewer side effects.

    If you never had a colonoscopy, you should ask about having it done NOW, before the radiation.  Even though they're trying to hit only the vagina with the radiation, it can damage surrounding tissue, to, so it's possible that the colonoscopy would be easier to do before the radiation, rather than afterwards.

    I remember someone

    saying their Family doctor told them to have s colonoscopy done, and the Oncologist said no after treatment.   Its a great question for the Oncologist.  

     

  • BluebirdOne
    BluebirdOne Member Posts: 552 Member
    edited May 2019 #13
    I was due for a colonoscopy right when I was dxed.

    Obviously, I did not have it done, or the mammogram I was also due for. At my 6 month post surgical checkup, 4 months post chemo and brachy, I asked about when to schedule them and they emphatically said no, too soon, perforation of the colon was a real danger. I had a CT scan immediately following my last chemo, anything would show up then. I have a history of polyps so I was on the 3 year intervals. I am due for another CT scan and oncologist visit mid May so I am going to ask again. 

    Denise 

  • MAbound
    MAbound Member Posts: 1,164 Member
    edited May 2019 #14
    Just checking

    Did your report specifically say no lymphovascular invasion or have it under "not identified". You want to be sure about that.

  • Primavera
    Primavera Member Posts: 231 Member

    I was due for a colonoscopy right when I was dxed.

    Obviously, I did not have it done, or the mammogram I was also due for. At my 6 month post surgical checkup, 4 months post chemo and brachy, I asked about when to schedule them and they emphatically said no, too soon, perforation of the colon was a real danger. I had a CT scan immediately following my last chemo, anything would show up then. I have a history of polyps so I was on the 3 year intervals. I am due for another CT scan and oncologist visit mid May so I am going to ask again. 

    Denise 

    Me too.

    I had a referral for the colonoscopy too, but didn't get to do it.

    I had gotten the mammogram done. Then I was told to come back for a second mammogram and an ultrasound. Have to go back in August. Calcifications, probably benign, they said, come back in six months.

    Then I went to the gyno for the biopsy, which turned out not conclusive because there wasn't enough tissue. After that, a D&C at the end of March and all the prep for that during February and March and then the diagnosis...kept me busy. Then the hysterectomy in April.

    I decided to take a day off from making the next appointments today because I wanted to come here and check out everything before doctors confuse me with dates and times and ideas.

    My gyno-oncologist told me before the hysterectomy that I can the colonoscopy after the hysterectomy. That I needed to focus on the endometrial cancer first. So that's what I did.

  • Primavera
    Primavera Member Posts: 231 Member
    MAbound said:

    Just checking

    Did your report specifically say no lymphovascular invasion or have it under "not identified". You want to be sure about that.

    It said "not identified"

    As the oncologist was going throught the test, she told me the histologic grade FIGO 3 was the reason for the preventive radiation. And she also circled myometrial invasion (6%) and told me that was minimal. Also told me she looks for lymphovascular invasion and circled "not identified" while telling me I didn't have any. I know the term still bothers me. 

    She went through those results really fast, since she had already talked to me a little the day after the operation. I asked her why it said adenocarcinoma grade 3, but yet there was another spot where it said "clinical information: endometrial stromal sarcoma HCC C54.1" but she said they have to put a code in there and it's a broad code and so it went into that. That had me research for days before seeing her, because endometrial stromal sarcoma is different and very rare.

    She crossed over the word "radical" next to hysterectomy and said I didn't have "radical" so I guess now I can't trust anyone with these reports that you get online! Good thing I got to talk to her.

  • Forherself
    Forherself Member Posts: 697 Member
    The term not identified

    I suspect it is a legal expression.   Saying there is none is impossible because they didn't remove ALL the tissue for biopsy.  Even if there is a 1 in a 1000 chance they need to say not identified.   It seems to me that the surgeons can see cancer lesions.  I know the odd cell can always be lurking, and as soon as the doctor says not present, then one case will have one cell.   I think that is part of the frustration with the disease.  There are no absolutes with this diagnosis.   Your doctor cannot guarantee much because she can't see every cell.

  • Primavera
    Primavera Member Posts: 231 Member

    The term not identified

    I suspect it is a legal expression.   Saying there is none is impossible because they didn't remove ALL the tissue for biopsy.  Even if there is a 1 in a 1000 chance they need to say not identified.   It seems to me that the surgeons can see cancer lesions.  I know the odd cell can always be lurking, and as soon as the doctor says not present, then one case will have one cell.   I think that is part of the frustration with the disease.  There are no absolutes with this diagnosis.   Your doctor cannot guarantee much because she can't see every cell.

    I agree.

    I asked the radiologist about that term. He says it means "not present" and "not identified" is just part of the codes they use. It makes me uneasy that they don't use "not present" instead.

    The only place where I could find these codes is in this link, at the bottom.

    http://ncdbpuf.facs.org/node/359