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Just blowin' smoke?

Jacsma
Posts: 9
Joined: Dec 2016

I think I hinted (or maybe more than hinted) at my lack of trust in the medical community, with a long history of reasons.

Question:  Are my docs just blowing smoke?

I had my first appointment yesterday with the onc.  The way everything went and the things that were said, you'd think I was just having some gastro issues and they were recommending my gall bladder be removed.   Everyone except the nurse.  She was the first to come in, doing the intake, etc.  She came in the room, asked how I was, I said I was 'lovely', and she said 'really?'.  She got down at eye level and looked into my eyes, asking if I was really alright.  I said "yes, I'm fine - why are you asking?"  She said she was surprised by my response, and she doesn't think she's ever gotten that kind of response.  I asked what she meant - and she said the response is typically a bit more horrified or horrific.  I told her I don't know enough about what's going on yet to be horrified about it.  Each time she came back into the room, she hugged me and told me she was proud of me.  I asked 'why?'.  She was apparently just impressed with my happy-go-lucky attitude, acting as if nothing were wrong, with not a hint of sadness, fear, etc.

In contrast .... the onc and the nurse pract are the ones that kept telling me that the chances of just getting it all out with a hyster are 95%, I have the best 'good' kind of cancer cells, etc.  

Reckon the truth is somewhere between these two attitudes?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1577
Joined: Jun 2015

Jacsma,

It's hard to imagine saying any kind of cancer is "good". However, given a choice.... I would take the garden variety any day!  It is very slow growing and in many cases only requires a hysterectomy. My sister and two of my cousins had "that" kind and did not require further treatment. I, on the other hand had a grade 3 kind and needed chemo and brachy therapy. That being said, any kind of cancer is scary and needs to be taken seriously. Perhaps your doctor and PA are trying to keep you calm?  I can't remember if you had a scan with results provided. I'm hopeful that yours is contained and you get to put this behind you quickly.

Take care and take this one step at a time. It really sounds like you are.

Love and Hugs,

Cindi

MAbound
Posts: 906
Joined: Jun 2016

I think that every doctor I've ever seen is cautious with their words. It's probably a defense mechanism in our sue happy country so that nothing they say can come back to bite them in the butt later. The best thing to do is to wait until your pathology reports after surgery come back and try not to read anything into anybody's body language, demeanor, etc in the meantime. You are going to drive yourself batty doing that. A lot of people panic at just the word cancer when they hear for the first time in reference to themselves and the nurse was probably impressed that you weren't doing that in front of her. She probably has a lot of experience with pretty emotional patients. Hang in there!

Jacsma
Posts: 9
Joined: Dec 2016

I'm very new to this, and don't really know enough about it to hold an intelligent conversation.  Maybe I'm in denial, have my head in the sand, or am just too busy with Christmas to think a lot about it.  I just haven't seen the need in spending my time thinking and worrying about something that I don't really know much about (as far as how bad it is, etc.).  I THOUGHT that yesterday would answer a lot of questions for me, but - not really.  I guess I was expecting some scans or something to see if it has spread, etc. but I've waited 3 weeks to see an oncologist, so they can tell me it'll be 3 more weeks before surgery and then another week or so before we know about staging, etc. 

Does that sound about right?  

Here's the scary (for me) thing ....  I had a bizarre and scary dream about 7 or 8 years ago.  I was on the operating table, having some sort of gynecological surgery (not sure how I knew this, but I knew it at the time, and even told my family about the dream the next day), and an angel (?) swooped in from above and got right in my face and whispered very loudly to me "you're dead".  I was startled awake, and sat straight up, scared.  I don't usually remember dreams, but I've never forgotten that one.  Now ....     here we go.  Hard NOT to think about that.  

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

My surgery was about 3 weeks after diagnosis because my ob/gyn worked with my gyn/onc to schedule the surgery prior to me seeing the gyn/onc.  I did have a CT scan prior to surgery to see if the cancer had spread, but not everyone has that done.  And yes, usually it's about a week after surgery when the pathology comes back.  I decided to wait until my post-op appointment with gyn/onc 3 weeks after surgery to find out the results, because I would have just made myself crazy with lots of questions until my appointment with him anyway and figured I'd rather spend my energy healing.  The "garden variety" cancer (and who the heck decided to use that phrase in regard to cancer?  My ob/gyn used it when she told me I didn't have that kind) is slower growing, so that is probably the best news you can get at this point.

I can understand your dream kind of freaking you out now, but hey, I've had a number of pregnancy and having a baby dreams, and that's never happened in real life.  It's just a dream, who knows where that came from.

Try to enjoy the holidays and then you can concentrate on surgery, recovery, etc.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2644
Joined: Mar 2013

Jacsma, your time line sounds about right - your wait, your surgery, and your report.  You keeping busy is great and don't worry thinking anything is right or wrong - it is your way and that's ok.  

I think I had a few strange dreams and I wouldn't be surprised if my subconscious was just coming through with every crazy thing it could grab on. 

EZLiving66's picture
EZLiving66
Posts: 1369
Joined: Oct 2015

That's exactly what my oncologist told me when I went in for my first appointment - total hysterectomy should do the trick and there was no rush because he was going on an extended vacation.  Well, his tune changed when the pathology report came back and it was Stage II, Grade 3 UPSC.  Until then, I wasn't worried a bit because he wasn't.  Afterward, I really didn't know what he was talking about but I could tell he was a lot more "excited" about what I had so I knew it was NOT a good thing - LOL!

Good luck!!

Love,

Eldri

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

My surgery did not happen as soon. First it took a couple weeks before I got into the gynecologist oncologist and I had further tests etc. I had the surgery probably around a month later. Part of the delay was my daughter's Florida wedding. I pushed to see the dr. A week after the surgery, but in hindsight I probably should have just waited for the two weeks instead because it really didn't change my treatment plan. I had to wait to be healed before getting anymore treatments.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I agree that the timeline seems about right. Mine was diagnosed as Grade 3 on 9/8/15 after a d&c on 9/3 so I was in surgery on 9/23.

My pathology/radiology reports are available online within 4 days of a procedure. Yours may be, too, if your doctor or medical group has an online portal. That may help speed up the time you find out about the staging and grade.

Maybe you should consider saying something the next time you see the nurse who was overly empathetic and let her know how her actions affected you? She may not even realize how much stress she is adding to an already stressful situation and appreciate the feedback.

Good luck to you and try to use this 3 week down time to enjoy the holidays and spend time doing whatever it is that makes you happy! Kim

 

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Just my perspective, from a person who has fought this cancer beast for over 7 years.  It sounds like this nurse has either had cancer herself or someone she loves has had this news.  While you seem very upbeat, she knows(and is giving you permission) to have a meldown anytime you want.  My daughter-of-the-heart is this kind of R.N.  She doesn't want you to suddenly hit that "brick wall" head on.  There WILL be changes to your body and your life, even if you have the "garden variety" cancer.  It is ok to to melt down...whenever you are ready.  As to your time line I can't say.  I was diagnosed in July 09, but had to have the first of three open heard surgeries to corect a birth defect in the aortic valve and didn't get to have the cancer remover til Dec. 09...talk about nerve racking!  I was one hot mess!  Good luck!  Best, Debrajo

Jacsma
Posts: 9
Joined: Dec 2016

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 

 

Kaleena's picture
Kaleena
Posts: 1979
Joined: Nov 2009

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
Posts: 906
Joined: Jun 2016

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's picture
Kaleena
Posts: 1979
Joined: Nov 2009

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

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

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

MAbound
Posts: 906
Joined: Jun 2016

There are some ladies here on this board who also were diagnosed with MMMT cancer who will probably come along in a while to correct me or add in what they know, but here's what I can share.

MMMT makes up about 2-5% of all endometrial cancers and it is one of the more aggressive subtypes and thus I think that even though it was caught very, very early for you based on your path report, chemo might still be on the table for you, but I could be mistaken about that.

As to reading your report, here's some translation:

Lymph nodes: they removed at least one lymph node at each side of your pelvis to test for cancer spread outside of your uterus and both were benign (non-cancerous or non-malignant). That's really, really good!

Your tumor in the uterus did not spread to your fallopian tubes or ovary and only penetrated the uterine muscle about 25-30% ( 4mm of 26mm, less than 50% is a good thing). The tumor did not extend down into the cervix (also a very good thing). Your uterus was intact when tested and that's a good thing because sometimes tumor cells can accidentally contaminate healthy tissue during surgery. 

The histologic type: carcino and sarcoma refer to the two types of cancer found that resulted in your MMMT diagnsis and Homologous type means that the sarcoma part is made of cells from the uterus. If it had been heterologus it would have been from tissue not found in the uterus.

Gross examination is just a physical description of the specimens they recieved for testing. The important parts are that it didn't extend to the lower uterine segment (increases risk of recurrance and need for radiation to prevent) and that depth of myometrial invasion that is less than 50%.

Leiomyomata absent: you don't have fibroids. A paratubal cyst is just a benign sac of fluid.

Except for the type of uterine cancer, the report sounds real good and the main question will be is there need for chemo or just watching you for this as you move on. I hope this helps you relax a bit till you see your doctor.  

BTW, this type of uterine cancer has many of the same risk factors as the "garden" variety of cancer, so you may want to consider what you can do to limit those that you can control (diet, weight, excercise, hormone balance, etc.) and maybe ask about genetic counseling, especially if you have kids or grandkids. 

Best wishes!

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Hello Pam,

I don't have MMMT ("malignant mixed Müllerian tumor" in the report), but there are a number of ladies on the board who do, and I'm sure some of them will respond soon.

I know how hard it is to wait even a few days to talk to one's doctor. It sounds like your doctor is very responsive, so you're likely to get all the information you need when you talk to her. Not being a doctor, I hesitate to give medical interpretations, but I think you know the limitations of discussion on a board like this. (The level of discussion on this board is generally higher than in a lot of the other online groups I've seen, and most of those who post are well informed.)

My interpretation of your report is that your cancer was caught at a very early stage: it had not spread to the ovaries, cervix, or lymph nodes. That's fantastic news. Sometimes that would mean no further treatment after surgery, just regular checkups. As your doctor said, they've identified it as one of the rarer and more aggressive forms of endometrial cancer (carcinosarcoma/MMMT). My understanding, based on my conversations with my own doctor and what I've read (and from comments from ladies on this board) is that the more aggressive types of endometrial cancer (UPSC, clear cell, and MMMT) are considered high-grade cancers regardless of stage. This means that they are often treated with chemo and/or radiation in addition to surgery even when the stage is "low." But that may not be the case for a cancer that was caught at such an early stage.

So my advice for approaching your appointment with your doctor would be to be optimistic but also be prepared to hear that your doctor recommends some further treatment.

The Foundation for Women's Cancer has some good brochures about endometrial cancer that include questions to ask your doctors:

http://www.foundationforwomenscancer.org/educational-materials/uterine-cancer/ .

You might search or browse previous threads for mentions of MMMT or UPSC to see what others have posted about their treatment and experiences.

Best wishes. I hope you can find ways to distract yourself this weekend! Let us know what you find out.

Rebecca

 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

HA! MAbound and I were typing at the same time, with similar interpretations of the report!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

The ladies above are correct.  It has been caught at a very early stage.  The fact that lymph nodes were negative and that you have no lymphovascular invasion is good news. I, too, was diagnosed with carcinosarcoma though I had some positive lymph nodes and lymphovascular invasion.  Be aware that this can be diagnosed in error because it is so rare.  A second pathologist interpreted mine differently as UPSC.  It might not be a bad idea to get a second opinion on the pathology.  However, both are grade 3 cancers and for most, the frontline treatment regimen is similar if not the same.  It is likely that your gyn/onc will recommend at least chemo though she may offer close monitoring as well.  If you didn't have a scan prior to surgery, she may want to schedule you for one now just to verify that it hasn't spread outside of the uterus.

As far as questions to ask your doc:  

Have her clarify the stage and grade, though that's pretty clear from the pathology report

Ask what treatment(s) she is recommending and why?  What is the goal of the treatment?

How will the response to treatment be monitored?

What are the risks and/or side effects of the recommended treatment and how can you mitigate some of those?

What are the chances of recurrence with and without treatment?

Get copies of all of your scans and pathology reports and if possible, take someone with you to your appointment to be another set of ears.  Or record it on your phone.  I found that very helpful, because you are hit with a lot of information that takes a while to digest.

Take a deep breath.  This cancer stuff can give one whiplash!

Chris

 

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2644
Joined: Mar 2013

As the ladies have already said and on your report:  MMMT, Stage 1A.  It is an one of the aggressive forms of uterine cancer but it is caught very early.  I don't know what stage Trish's was but she is a MMMT survivor.  She had chemo, I don't know about radiation.

I am sure this is overwhelming.  Scary.  Terrifying.   Please take a breathe.  You are not alone and there are women on here who are survivors of this.  You can do this and you know we are here for you.

Nellasing
Posts: 529
Joined: Oct 2016

Isn't the knowledge of these ladies incredible?!  I just am so amazed and blessed by their willingness to share their stories and information.

I do not have their knowledge or your type of cancer but just wanted to chime in that so far that all looks so positive being what it is and I would agree with everything especially what Chris said about taking someone with you or recording the visit you have with your Dr. as it does get overwhelming when they start rapid firing terms and statistics at you. 

We are waiting with you and will be thinking of you as you meet with the Dr.  Try to rest in the knowledge that you are doing all you can do at this point and worrying over these next fews days will not change anything but would be quite normal.  Prayers and (((HUGS)))

Jacsma
Posts: 9
Joined: Dec 2016

Thanks to all who responded.  This is such a loving, supportive group - and very, very much appreciated.  

  MAbound, you said " ... Homologous type means that the sarcoma part is made of cells from the uterus."  Does that mean that the carcino part may be made of cells from elsewhere?    

I'm wondering the liklihood of having it show up elsewhere in a scan (lungs, etc.) when it doesn't appear to even be any place else in the pelvis.  

Everyone says found so early on, but I must have a distorted time frame, or not realize just how long a span of time equals 'early.  I started 'leaking' fluids probably 2 years ago, started bleeding in February 2016, and started very heavy daily bleeding in October with severe pain and huge clots.  With this being such a rare and aggressive form ... Does this time-line still make sense?

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

With no cancer found in lymph nodes, the pelvic wash, or in other organs in the pelvis, I think chances of metastasis elsewhere in the body would be low. 

"Early" in terms of the development and potential spread of the cancer (= the stage). I don't know about the actual  timeline and onset of symptoms. That might be something to ask your doctor about. 

My cancer was staged as IIIc2 at diagnosis, and one of my doctors said it had probably been developing for about a year. She seemed to be more or less guessing, but it is interesting that if accurate that would put the onset at around the time I had shingles. 

janaes
Posts: 785
Joined: May 2016

Jacsma, Sorry i didnt get to you sooner, but I wanted to let you know that I feel for you.  I feel I was were you are last April/may.  Although a little different, my situation sound simmiliar ton yours.  First of all of of my doctors thought I had the garden veriety uterine cancer.  I was thrilled to hear that until another doctor told mer I had carsinosarcoma.  I went from feeling I was going to have no treatment to having chemotherapy.  I hated that chance.  My cancer was confined to my uteris which helped me feel better about things.  No limp nods were involved.  The doctors felt they caught it early.  It was my pathology report that helped me decide to do chemo and that I did indead have carsinosarcma. I agree with chris that a second opinion might not be a bad idea.  As hard as it was I did decide to do chemo and am glad I did.  Treatment does end and my life is pretty much back to normal.  I am still dealling with some side effects but am still glad that i gave my cancer a fight with chemo. 

MAbound
Posts: 906
Joined: Jun 2016

Carcinomas are the most common type of all cancers...they usually originate in epithelial tissues such as the linings of body organs whereas sarcomas are comparitively rare and develop in mesodermal (middle layer) of tissue, so the answer to your question is no, the carcino cells do not come from elsewhere, they originated in the endometrium (uterine lining). BTW, "adeno" for the "garden" variety of endometrial cancer means glandular. It reflects the hormonal nature of this cancer.

There are still only theories as to how this subtype arises from similar origins as endometrial adenocarcinoma, but the strongest theory is that after the initial mutation of a cell into a cancerous form, there is further mutation that leads to this mixed cell tumor rather than two seperate cancers developing and growing together at the same time. (Conversion vs. Collision theories)

The bottom line is that it doesn't really matter how or when this tumor started, except as it relates to what you can do to put yourself in the best place to prevent any recurrance. That comes from being prepared for the possibility of chemo and/or radiation and dealing with the risk factors for this cancer that you have some control over. The critical thing is that path report that tells you where you stand now and what you need to do to beat this diagnosis. The really, really bright spot is how early this was caught for you in particular, so you have very good reason to be optomistic about how all of this is going to go for you.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

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. 

MoeKay
Posts: 230
Joined: Feb 2004

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. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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

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