Just blowin' smoke?

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  • derMaus
    derMaus Member Posts: 558 Member
    Let Me Chime In Here...

    There are some wonderful answers here, and wonderful people on this board who've helped me immeasurably. Kudos to all of them and the knowledge they share. To second what Chris said: it's not uncommon for a post-op path report to reveal something different than what was expected going in. In my case, my post op report came back with a very rare reading of mixed neuroendocrine and 'regular' Grade 3 undifferentiated endometrial cancers. My oncologist was blithely mixing up the chemo in the back room (sic) to treat the neuroendocrine when I demanded a second path report. The second one said it was not neuroendocrine, but had "neuroendocrine features". I then had the slides sent to Stanford's neuroendocrine tumor center, who finally gave the all clear that it was basic endometrial cancer. My treatment shifted accordingly, but it was a hair-raising three weeks while all the different reports were pending. Moral of the story is to get a second opinion on both treatment and the pathology report that's being used to guide that treatment. 

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited January 2017 #23
    Jacsma said:

    No longer Garden Variety ... I don't understand

    Can any of you more experienced, more knowledgeable folks help me understand?  As I've said before, and as is still the case - I'm don't know enough about all this to even hold an intelligent conversation.  All I know is what I've been told, what the reports have said, etc.... and honestly don't even know whether or not any of it makes sense.  I'll give you all that I know, or have been told, and maybe you all can tell me whether or not it makes sense.  

    The pathology from the original biopsy came back on December 2nd, as Grade 1 Endometrial Adenocarcinoma.  I was told it was the 'good kind' of cancer cells - non-aggressive, very slow-growing, etc. and 95% chance that hysterectomy would be the only course of action needed. Had the complete hysterectomy on January 5th.   Was told that my bladder had basically been fused into the uterus due to past cesareans, scar tissue, etc. but they were able to separate it and everything looked good.  Good News!

    I got an update on January 9th that stated “Good News!  Your washings are negative.  Your final pathology is still pending.”  In looking at the report, it states “Specimen source A – Pelvic Washing”  “Negative – no evidence of malignancy” “Benign Mesothelial Cells”

    I got a voicemail from gyn/onc this morning that my pathology was back and she was posting it (on the patient portal).  She said (in voicemail) that the good news is that the lymph nodes were negative, but that I actually have a more aggressive form of cancer.  My post op is schedule for Tuesday (17th), so she said we would discuss further treatment, scans needed, etc. then. 

    In viewing the report, I find the following:

    Her note ”Your pathology revealed a tumor called carcinosarcoma, which is a more aggressive tumor.  The good news is that the lymph nodes were negative. 

    I hope you don’t mind, but I’m not familiar enough with these reports or the lingo to even know what part of the report is relevant – so …  here’s pretty much the whole thing.  I apologize for my ignorance. 

    A. Right external iliac sentinel lymph node, excision:   One benign lymph node (0/1). 

    B. Left proximal obturator sentinel lymph node, excision:   One benign lymph node (0/1). 

    C. Uterus, bilateral ovaries and fallopian tubes, hysterectomy and bilateral salpingo-oophorectomy:

    Malignant mixed mullerian tumor (MMMT, carcinosarcoma), 7.5 cm, with a predominant exophytic component.

    The tumor invades 4 mm into a 26 mm thick myometrium

    Lymohovascular invasion is not identified.

    Remaining uterus:

    Myometrium: No pathologic diagnosis. 

    Cervix: No pathologic diagnosis. 

    Serosa: No pathologic diagnosis.

    Right and left ovary: No pathologic diagnosis. 

    Right and left fallopian tubes: No pathologic diagnosis. 

    See synoptic report for additional details. 

      Synoptic Report

        ENDOMETRIUM: Hysterectomy, With or Without Other Organs or Tissues  (Endometrium - All Specimens) 

    SPECIMEN 

       Specimen Integrity:    Intact hysterectomy specimen 

    TUMOR 

       Histologic Type:    Carcinosarcoma (malignant mixed Müllerian tumor) 

       Carcinosarcoma Types:    Homologous type 

       Tumor Size:    Greatest dimension (cm): 7.5 cm 

         Myometrial Invasion:    Present 

           Depth of Myometrial Invasion:    Specify depth of invasion (mm): 4 mm 

           Myometrial Thickness:    Specify (mm): 26 mm 

         Tumor Involvement of Cervix:    Not involved 

        Involvement Status of Right Ovary:    Not involved 

        Involvement Status of Left Ovary:    Not involved 

        Involvement Status of Right Fallopian Tube:    Not involved 

        Involvement Status of Left Fallopian Tube:    Not involved 

         Lymph-Vascular Invasion:    Not identified 

    MARGINS 

       Margins:    Uninvolved by invasive carcinoma 

    LYMPH NODES 

       Regional Lymph Nodes:    Pelvic 

         Number of Pelvic Lymph Nodes Examined:    Specify number: 2 

       Lymph Node Involvement:    None identified 

    STAGE (pTNM) 

       Primary Tumor (pT):    pT1a: Tumor limited to endometrium or invades less than one-half of the myometrium 

         Modifier:    (sn) 

         Category (pN):    pN0: No regional lymph node metastasis 

       Distant Metastasis (pM):    Not applicable - pM cannot be determined from the submitted specimen(s) 

    FIGO STAGE 

       FIGO Stage:    IA: No or less than half myometrial invasion 

     Clinical Information

     Endometrial cancer.

    Per Maestro care: The patient is a 55 year old female with endometrial adenocarcinoma FIGO 1 on EMB on 11/30/16.

      Gross Examination

     A. "Right external iliac sentinel node". Received fresh and placed in formalin on 1/6/17 at 8:35 am is a 3.5 x 2.2 x 0.4 cm portion of adipose tissue with a 2.3 x 1.5 x 0.5 cm tan-pink, and firm, bisected and submitted entirely in blocks A1-A2 following sentinel lymph node sectioning protocol.

    B. "Left proximal obturator sentinel lymph node". Received fresh and placed in formalin on 1/6/17 at 08:35 am is a 3.0 x 2.0 x 0.5 cm portion of adipose tissue with a 2.5 x 1.0 x 0.5 cm tan-pink and firm lymph node is bisected and submitted entirely in block B1 following sentinel lymph node sectioning protocol.

    C. "Uterus, tubes, ovaries, and cervix", received fresh for frozen section and placed in formalin on 2150 at 1/5/17.

    Procedure: Simple hysterectomy with bilateral salpingo-oophorectomy

    Specimen integrity: Intact

    Weight: 177 grams

    Height of uterus: 11.5 cm

    Breadth of uterus at fundus: 7..4 cm

    Anterior-posterior width: 4.2 cm

    Serosa: Pale tan-white, smooth and glistening, grossly unremarkable

    Length of endometrial cavity: 6.9 cm

    Cornu to cornu width of endometrial cavity: 5.4 cm

    Tumor size: 7.5x4.0x1.1 cm with an overlying exophytic tan and firm polypoid mass that is 5.0 x 4.5 x 2.5 cm that is attached to the posterior fundus. 

    Tumor description: Raised, tan, firm, with tan-white cut surface. The attached polypoid mass has a tan, firm and hemorrhagic cut surface. 

    Tumor site: Diffusely involving the anterior and posterior including the fundus and cornu but does not grossly extend to the lower uterine segment

    Myometrial invasion: 0.5 cm

     Myometrial thickness: 2.6 cm

    Remaining myometrium: Tan-pink, firm with mild trabeculation.

    Leiomyomata absent. 

    Adjacent non-neoplastic endometrium thickness: 0.2 cm

    Adjacent non-neoplastic endometrium description: Tan, smooth, glistening. 

    Diameter of cervix: 2.8x2.0 cm

    Diameter of external os: 1.0 cm

    Shape of os: Slit-like

    Endocervix and Cervix: The ectocervix has mild blue-green dye but is otherwise pale tan, smooth and glistening. The endocervical canal is tan, glistening with grossly unremarkable with herring bone pattern. 

     Bilateral tubo-ovarian complex were received unoriented and detached from the main specimen. One set of the tuboovarian complex is received with the ovary separated from the fallopian tube now designated as tubo-ovarian complex. Tubo-ovarian complex A is 7 gram (post fixation) and tubo ovarian complex B (attached ovary and fallopian tube) is 6 grams, post fixation.

    Ovary A is 3.4 x 1.7 x 1.0 cm with an detached 6.0 cm long x 0.5 cm in diameter fimbriated fallopian tube. 

    Ovary B is 3.3 x 1.5 x 0.9 cm with an attached 3.5 cm long x 0.6 cm in diameter non-fimbriated fallopian tube. 

    The external surfaces of both ovaries tan-yellow with superficial cysts up to 0.3 cm in greatest dimension. The cut surface of both ovaries is tan, firm and grossly unremarkable. The serosa of both tubes is tan-gray, smooth and glistening with a small paratubal cyst up to 0.2 cm in greatest dimension. The lumen on average is patent, pin-point and grossly unremarkable.

    Special studies prospectively ordered: No

    Photograph: No

    Block diagram: No

    Representative tissue collected for the Biospecimen Repository and Processing Core under Duke Pro00035974?: No

    Tumor submitted entirely: No

    Endometrium submitted entirely: No

    Sections submitted in blocks C1-C19

     

    Can you give me a crash course in what the heck I’m looking at?  What should my questions be for her on Tuesday?  Does all of this make sense?

    Thank you for any help that you can offer.

     

    Pam 



     

    Pam:

    Those reports can be confusing at times (most of the time!).   However, the one thing that stands out for me is that you have clear margins. (Thats great).  It appears that the tumor was contained within a certain area (also good).   N = nodes and yours were 0 which means no lymph nodes were involved.   M = metastasis which yours indicates not applicable at this time which means that they did not on THIS particular specimens find any metastasis.  CM = centimeters  For example your ovary was 6 cm so that would be about 2 inches.   mm = millimeters - which are very tiny (as per your invasion of 4 mm) that would be 0.15748 of an inch (so very small).

    Most of the report shows sizes of the ovaries, and specimen sizes.  Homologous type tumor means everything is simliar in natur.

    Questions for Tuesday:

    Will they have to go back in to do a proper staging?  (They did with me)

    How are they going to treat you?  (They weren't sure if my endometrial adenocarcinoma was that or MMMT and they were never able to determine where it originated so I was treated as Ovarian Cancer).   The reason for this is that your insurance carrier covers more tests and scans for this type of cancer than endometrial.

    Ask what exactly your Grade and Stage is.   (Mine was Stage 3a, Grade 2).

    I'm glad you were able to read your report.   I didn't officially read mine until about a year or so later.   It was too scary at the time.   Although when I read it a year later, it didn't seem as scary then.

    Just so you know Pam, I was 45 when I was diagnosed.   I turned 56 in June.   

    For your information, I had 3 C-Sections so when they did my original hysterectomy, it was very difficult.  They didn't even think I had cancer at the time.  It was only after the pathology came back and they were surprised.  I had it in my uterus, cervix and left ovary.  And then I had to go back a month later and have staging done and they also removed my appendix and omentum at that time.

    I'm telling you this because you can get through this.  This site is a good place to vent.  Take a deep breath and don't be afraid to ask questions questions questions.   Every question you have is important.

    My best to you on your upcoming appointment.

    Kathy

  • MAbound
    MAbound Member Posts: 1,168 Member
    Kaleena said:

    Pam:

    Those reports can be confusing at times (most of the time!).   However, the one thing that stands out for me is that you have clear margins. (Thats great).  It appears that the tumor was contained within a certain area (also good).   N = nodes and yours were 0 which means no lymph nodes were involved.   M = metastasis which yours indicates not applicable at this time which means that they did not on THIS particular specimens find any metastasis.  CM = centimeters  For example your ovary was 6 cm so that would be about 2 inches.   mm = millimeters - which are very tiny (as per your invasion of 4 mm) that would be 0.15748 of an inch (so very small).

    Most of the report shows sizes of the ovaries, and specimen sizes.  Homologous type tumor means everything is simliar in natur.

    Questions for Tuesday:

    Will they have to go back in to do a proper staging?  (They did with me)

    How are they going to treat you?  (They weren't sure if my endometrial adenocarcinoma was that or MMMT and they were never able to determine where it originated so I was treated as Ovarian Cancer).   The reason for this is that your insurance carrier covers more tests and scans for this type of cancer than endometrial.

    Ask what exactly your Grade and Stage is.   (Mine was Stage 3a, Grade 2).

    I'm glad you were able to read your report.   I didn't officially read mine until about a year or so later.   It was too scary at the time.   Although when I read it a year later, it didn't seem as scary then.

    Just so you know Pam, I was 45 when I was diagnosed.   I turned 56 in June.   

    For your information, I had 3 C-Sections so when they did my original hysterectomy, it was very difficult.  They didn't even think I had cancer at the time.  It was only after the pathology came back and they were surprised.  I had it in my uterus, cervix and left ovary.  And then I had to go back a month later and have staging done and they also removed my appendix and omentum at that time.

    I'm telling you this because you can get through this.  This site is a good place to vent.  Take a deep breath and don't be afraid to ask questions questions questions.   Every question you have is important.

    My best to you on your upcoming appointment.

    Kathy

    Homologous

    The word homologous itself means similar, but in regards to MMMT tumors, they are divided into two different types: Homologous type is the type in which the sarcomatous component is made of tissues found in the uterus and Heterologus type is the type in which the sarcomatous component is made up of tissues not found in the uterus. It's nit-picky, I know, and not all that important to the bottom line, but I thought I'd just clear that up in case any one was interested in understanding that distinction where type gets mentioned on a report like this. 

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited January 2017 #25
    MAbound said:

    Homologous

    The word homologous itself means similar, but in regards to MMMT tumors, they are divided into two different types: Homologous type is the type in which the sarcomatous component is made of tissues found in the uterus and Heterologus type is the type in which the sarcomatous component is made up of tissues not found in the uterus. It's nit-picky, I know, and not all that important to the bottom line, but I thought I'd just clear that up in case any one was interested in understanding that distinction where type gets mentioned on a report like this. 

    Thanks for expanding the

    Thanks for expanding the definition when it regards MMMT tumors.  Its not at all nit-picky as I didn't elaborate and it is important for any one dealing with MMMT to get as much information as they can. Smile

  • MoeKay
    MoeKay Member Posts: 477 Member
    I second the recommendation of derMaus re Second Opinions

    I agree with the recommendation derMaus made that you get second opinions on pathology and treatment.  I think this is warranted in all cases, but even moreso in your case where your biopsy diagnosis was grade 1 adenocarcinoma and your surgery pathology is MMMT, which is a rare, more aggressive cell type.  MMMT was a differential diagnosis in my case, but the original pathologist ruled it out and concluded that I had adenocarcinoma.  I obtained a second pathology opinion which confirmed the diagnosis.  I also got a second opinion on my treatment plan. 

    I recall reading years ago that gyn pathology had a higher error rate than many othe types of cancer.  You want to make sure that you are not overtreated or undertreated, and that the treatment you ultimately receive is appropriate for the type of cancer you have. 

  • derMaus
    derMaus Member Posts: 558 Member
    edited January 2017 #27
    MAbound said:

    Homologous

    The word homologous itself means similar, but in regards to MMMT tumors, they are divided into two different types: Homologous type is the type in which the sarcomatous component is made of tissues found in the uterus and Heterologus type is the type in which the sarcomatous component is made up of tissues not found in the uterus. It's nit-picky, I know, and not all that important to the bottom line, but I thought I'd just clear that up in case any one was interested in understanding that distinction where type gets mentioned on a report like this. 

    I'm Always Happy...

    ...that you're willing to do the heavy lifting to research and articulate this in terms I can understand. Thanks!

  • Kvdyson
    Kvdyson Member Posts: 789
    Second opinion

    Hi Pam, I think we've already met on the MMMT FB page? Anyways, I just posted a long dissertation about my experience with second (and third opinions) in a reply to another post so I won't go into detail about it again here, but I agree that you should consider getting another opinion since there is some "controversy" about your diagnosis. It will help put your mind at ease that you are getting the right treatment(s) and that, to me, was worth the trouble. Wishing you peace, Kim