Stage 2, oops, no, Stage 4

Tamlen
Tamlen Member Posts: 343 Member

I was diagnosed with Grade 1, Stage 2 endometrioid adenocarcinoma following a total hysterectomy and lymphadenectomy two months ago today. My tubes, ovaries, and lymph nodes were negative for cancer. LVSI was suspected but not confirmed.

After asking repeatedly for a CT scan, I finally had one a couple of weeks ago and it showed nodules in my lungs. The lung biopsy results arrived today and it is endometrioid adenocarcinoma, putting me not at Stage 2, but at Stage 4.

Nothing else showed up in the CT scan but for some slightly enlarged lymph nodes up by my lungs. I am asymptomatic with the cancer in my lungs.

I am puzzling over this. Has anyone ever heard of endo cancer being contained in the uterus and heading straight to the lungs with no other stops in between? I know LVSI means it can travel anywhere, but it seems odd to me that it wouldn't go to, say, the ovaries or pelvic lymph nodes first.

I'd also love to hear from any of you ladies who've had mets in the lungs and what your experience and longevity has been like so far. It doesn't sound very promising from what I'm reading.

Thank you.

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Comments

  • derMaus
    derMaus Member Posts: 558 Member
    What the heck!

    I'm glad you insisted on the CT scan so you know what you're working with. It seems you are prescient, but I can't imagine how disconcerted you must be with the results. Here's an article that shows typical and atypical sites for mets. Lung is pretty typical, unfortunately. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613792/. What's unusual is that your's is a Grade 1, which usually doen't travel that far, or fast. Did the biopsy confirm that it was the same grade as the original?  Please keep us posted, you'll be in my thoughts and prayers. B

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    Tamlen, I am so glad you

    Tamlen, I am so glad you asked for a CT.  What made you do that?  If you 'felt' ok, I have no doubt you needed to repeatedly ask for the CT, but it turns out it was the right thing. 

    I think the lungs are one of the potential sites of concern for cancer to have a recurrence.  So keep pushing now, because now you have to have them address both areas.  We are here for you.

  • Tamlen
    Tamlen Member Posts: 343 Member
    I asked for the CT because

    ....I'd seen so many references on this forum to women having CTs. I struck me as odd that I hadn't had one and it seemed a good idea to make sure there was no cancer anywhere else before I made a radiation decision.

    I don't know if the lung biopsy confirmed Grade 1. The rad onc was home today but his nurse read the results for him so he could call me. So I haven't seen the actual report myself yet.

  • derMaus
    derMaus Member Posts: 558 Member
    edited April 2018 #5
    Tamlen said:

    I asked for the CT because

    ....I'd seen so many references on this forum to women having CTs. I struck me as odd that I hadn't had one and it seemed a good idea to make sure there was no cancer anywhere else before I made a radiation decision.

    I don't know if the lung biopsy confirmed Grade 1. The rad onc was home today but his nurse read the results for him so he could call me. So I haven't seen the actual report myself yet.

    They didn't do a CT before

    They didn't do a CT before surgery ?

  • Tamlen
    Tamlen Member Posts: 343 Member
    derMaus said:

    They didn't do a CT before

    They didn't do a CT before surgery ?

    Nope

    It was only on this forum that I learned, much later, that it's common to do one beforehand.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,351 Member
    Thank god for the WORLD WIDE

    Thank god for the WORLD WIDE WEB!  I think my CT was just in the pelvic area, not my lungs, so again, I applaud you for pushing.  

    I wonder if outcomes like yours, Tamlen, ever make doctors THINK AGAIN with others in the future!  Geez.  

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    I'm sorry. I've heard that

    I'm sorry. I've heard that lungs and liver is the most common place for our cancer to spread. I didn't have a CT scan before surgery. My biopsy just showed 1a and my ca--125 was low, so the doctors weren't worried.I received my CT scan a couple 2-3 weeks after surgery, and then again 3 months after. I'm glad you pushed for it.

  • linmk
    linmk Member Posts: 58
    Glad That That You Pushed For CT

    But I'm sorry to hear about the mets to the lungs. Yes, that's a common place for uterine cancer to spread. Very strange that the gyn-oncologist didn't do one before surgery.

  • oldbeauty
    oldbeauty Member Posts: 366 Member
    Been there, still here!

    Hello Tamlen, I was diagnosed with Stage IC, Grade 2 endometrioid adenocarcinoma in 2005.  I had total hysterectomy and some nodes resected.  (I did not have a textbook sentinel node sampling; don't get me started--that's another story).  Then followed 25-28 external radiation treatments and no brachytherapy (2 older men decided that it was unnecessary bc of the grade/type and bc I was relatively young and they mumbled something about the effect on my sex life).  And I was declared "cured."  In 2012 I had a recurrence with a right para-aortic node tumor and a suspicious node in my left clavicle and scattered lesions over both lungs.  Only the para-aortic node was biopsied.  I was afforded "palliative" care, meaning I had radiation on the known cancerous node (it was causing pain) and given high-dose progesterone to prolong life.  Within a year, I was found to be "no evidence of disease."  Then, in late 2016 I had a day where I peed blood.  After a Chest, Pelvis, Abdomen CT and a cystoscopy of my bladder, I was found to have several small nodules in my lungs.  They were too small to biopsy but, given my past history, were presumed a recurrence and this time I had chemo.  I had some difficulty early on with the carboplatin/taxol regime and ended up with 12 rounds of chemo of one or both drugs.  Since September 2017 I have again achieved remission with no evidence of disease in the March 2018 CT.

    So, don't count yourself out just yet.  I would say to be be very proactive about your body's ability to withstand the chemo, if that's where you're headed, especially relative to diet & exercise level (i.e., weight) and also your important levels like Vitamin B-12, which, if low, can buy you a case of neuropathy (like me).  While a recurrence means you are no longer considered curable, it does not mean that the disease can't be managed for a long time.  I'm going on 13 years (with an average of 5 years between bouts).  As time goes on, there are certain to be more therapies.  So, hang tough.  Best wishes, Oldbeauty

  • MrsBerry
    MrsBerry Member Posts: 102 Member
    Tamlen, I am so glad You were

    Tamlen, I am so glad You were able to convince the doc to do the scan, but so sorry you have this news. ((Hugs))

    I was not given a CT scan, either. Makes me wonder why it is standard in some cases, but not others.

  • pattiann45
    pattiann45 Member Posts: 22 Member
    TJ

    Again, I am sorry that this proved to be endometrial cancer in the lungs.  I love what Old beauty had to say, and look at that such good news with a long term survivor. 

    It is so hard to understand this cancer.  Sometimes it think that I am beginning to understand patterns, and then---no something totally unexpected happens.  There are way too many variables. It is impossible to say how the cancer spread to the lungs.  I hope that you are getting a PET SCAN, this will give you more information regarding any spread to lymph nodes in the pelvic area.  However, the most important thing is focusing on treatment.  I can follow-up with article, but remember reading that asymptomatic recurrences fare better.  I am thinking positive thoughts and prayers for you.  I am here if you ever need anyone to talk it out with.   Please stay tough.  

    Kindest Regards,  Patrice

     

  • derMaus
    derMaus Member Posts: 558 Member

    TJ

    Again, I am sorry that this proved to be endometrial cancer in the lungs.  I love what Old beauty had to say, and look at that such good news with a long term survivor. 

    It is so hard to understand this cancer.  Sometimes it think that I am beginning to understand patterns, and then---no something totally unexpected happens.  There are way too many variables. It is impossible to say how the cancer spread to the lungs.  I hope that you are getting a PET SCAN, this will give you more information regarding any spread to lymph nodes in the pelvic area.  However, the most important thing is focusing on treatment.  I can follow-up with article, but remember reading that asymptomatic recurrences fare better.  I am thinking positive thoughts and prayers for you.  I am here if you ever need anyone to talk it out with.   Please stay tough.  

    Kindest Regards,  Patrice

     

    Excellent Point

    Excellent point, a PET SCAN is definitely in order at this point. 

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    So sorry for your news.  It

    So sorry for your news.  It seems your instincts were good and you advocated for yourself.

     

    I did have a CT of the chest, abdomen, and pelvis before surgery, but only because I had lost 20-30 pounds due to gallbladder attacks. She wasn't going to do one until she realized how much I had lost. Of course,  it was read as uterus normal.

     

    It seems so strange to me not to check these things out in all cancer patients. 

  • MoeKay
    MoeKay Member Posts: 476 Member
    Risk Factors for Hematogenous Spread

    First, let me say that I'm very sorry to hear about the results of your lung biopsy.  I'm glad that you pressed for a chest CT, but very sorry that the news wasn't what you had hoped it would be. 

    Second, you asked above whether anyone ever heard of endometrial cancer being contained in the uterus and heading straight to the lungs with no other stops in between.  I recall that you mentioned in an earlier post that your tumor had invaded 99% of the thickness of your myometrium.  Here is one study discussing the fact that outer third myometrial invasion is one risk factor for hematogenous spread.  The article discusses the fact that many of the distant recurrences reported in the study were to the lung:  http://ar.iiarjournals.org/content/29/5/1715.full.  This study also reports that LVSI is another risk factor for distant recurrences, and you indicated that your LVSI status has not been definitively confirmed at this point.  

    I don't know if you've considered obtaining a second pathology opinion, but I'm wondering outloud about the possible inconsistency between a grade 1 tumor and 99% myometrial invasion.  If I were you, I would want to confirm that the grade 1 is accurate, as it may affect your treatment decisions.  From what I know about grade 1 tumors, they are supposed to be slow-growing.  My tumor was a grade 2 and I had approximately 80% myometrial invasion.  Also, a second pathology review would likely serve to confirm or rule out the LVSI finding.  I think it's very difficult to make a fully-informed decision on optimal treatment without reassurance that all the factors on which you're relying are correct.  Just my humble opinion. 

    Oldbeauty's advice above on her experience with likely lung metastases is quite encouraging, and I hope you have a comparable excellent treatment outcome. 

    MoeKay

     

  • pattiann45
    pattiann45 Member Posts: 22 Member
    hematogenous spread

    Moekay and TJ,

    Moekay,  I am very familar with the article that you cite, however, it is dated and I am not sure that outer third invasion adds much more to those with over 50 percent invasion. (I wish it were the case that it did, as I was 60 percent invasion).  LVSI is clearly a risk for hematogenous spread, but as I stated before the risk increases with extensive LVSI (not to say that even a single foci of LVSI is not a concern).  It is true that most grade 1 tumors are slow growing, yet the investigation into the molecular profiles of endometrial cancer is changing this assumption.  I will cite some articles at the end of this post, but what is becoming clear to those studying EC is the impact of the molecular class on prognosis.  More specifically, some classes (POLE) have a very favorable prognosis in spite of being high grade or myoinvasive, while others (low copy number) have a poor prognosis.  The landscape of EC has evolved over the past several years, and while grades are still important the molecular class also plays a huge part in prognosis, and as such play a part in treatment. 

    TJ,  I hope that you are holding steady there.  I would push for a Pet scan.  I am suspecting that they would be ok with this.  I would think that it would give you a lot of reassurance going forward.  And, if it were me, I would push for NGS (next generation sequencing) if this is a possiblity in your area.  I believe that there are some clinical trials regarding certain molecular profiles.

     

    https://www.cancer.gov/news-events/press-releases/2013/TCGAendometrial

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5154099/

     

  • Tamlen
    Tamlen Member Posts: 343 Member

    I'm sorry. I've heard that

    I'm sorry. I've heard that lungs and liver is the most common place for our cancer to spread. I didn't have a CT scan before surgery. My biopsy just showed 1a and my ca--125 was low, so the doctors weren't worried.I received my CT scan a couple 2-3 weeks after surgery, and then again 3 months after. I'm glad you pushed for it.

    No CA-125 test

    When I asked about the CA-125 test before my hysterectomy, my gyn-onc told me that it's not a helpful marker for low-grade endometrioid adenocarcinoma. What type do you have that you do get that test?

  • Tamlen
    Tamlen Member Posts: 343 Member
    oldbeauty said:

    Been there, still here!

    Hello Tamlen, I was diagnosed with Stage IC, Grade 2 endometrioid adenocarcinoma in 2005.  I had total hysterectomy and some nodes resected.  (I did not have a textbook sentinel node sampling; don't get me started--that's another story).  Then followed 25-28 external radiation treatments and no brachytherapy (2 older men decided that it was unnecessary bc of the grade/type and bc I was relatively young and they mumbled something about the effect on my sex life).  And I was declared "cured."  In 2012 I had a recurrence with a right para-aortic node tumor and a suspicious node in my left clavicle and scattered lesions over both lungs.  Only the para-aortic node was biopsied.  I was afforded "palliative" care, meaning I had radiation on the known cancerous node (it was causing pain) and given high-dose progesterone to prolong life.  Within a year, I was found to be "no evidence of disease."  Then, in late 2016 I had a day where I peed blood.  After a Chest, Pelvis, Abdomen CT and a cystoscopy of my bladder, I was found to have several small nodules in my lungs.  They were too small to biopsy but, given my past history, were presumed a recurrence and this time I had chemo.  I had some difficulty early on with the carboplatin/taxol regime and ended up with 12 rounds of chemo of one or both drugs.  Since September 2017 I have again achieved remission with no evidence of disease in the March 2018 CT.

    So, don't count yourself out just yet.  I would say to be be very proactive about your body's ability to withstand the chemo, if that's where you're headed, especially relative to diet & exercise level (i.e., weight) and also your important levels like Vitamin B-12, which, if low, can buy you a case of neuropathy (like me).  While a recurrence means you are no longer considered curable, it does not mean that the disease can't be managed for a long time.  I'm going on 13 years (with an average of 5 years between bouts).  As time goes on, there are certain to be more therapies.  So, hang tough.  Best wishes, Oldbeauty

    Oldbeauty

    Thanks for that note. It gave me a dose of hope right around the time I'm feeling pretty down with the news that they staged me way wrong. You've been through a lot but look where it's gotten you!

    I saw an oncological naturopath last week to come up with a plan for supporting my health/body during the fight and during what at that time was "possible chemo," now definite chemo.

  • Tamlen
    Tamlen Member Posts: 343 Member
    MrsBerry said:

    Tamlen, I am so glad You were

    Tamlen, I am so glad You were able to convince the doc to do the scan, but so sorry you have this news. ((Hugs))

    I was not given a CT scan, either. Makes me wonder why it is standard in some cases, but not others.

    I know!

    I wish I understood the protocols. I'm feeling my gyn onc has possibly missed a few things now and it's making me doubt her at a time when I really need her. I'm not doubting her treatment course, but all the "peripheral" stuff that she doesn't seem to act on unless another doctor or I push her (post-op pelvic check-up, CT, etc). I'm  now seeking a second opinion for this very reason.

  • Tamlen
    Tamlen Member Posts: 343 Member

    TJ

    Again, I am sorry that this proved to be endometrial cancer in the lungs.  I love what Old beauty had to say, and look at that such good news with a long term survivor. 

    It is so hard to understand this cancer.  Sometimes it think that I am beginning to understand patterns, and then---no something totally unexpected happens.  There are way too many variables. It is impossible to say how the cancer spread to the lungs.  I hope that you are getting a PET SCAN, this will give you more information regarding any spread to lymph nodes in the pelvic area.  However, the most important thing is focusing on treatment.  I can follow-up with article, but remember reading that asymptomatic recurrences fare better.  I am thinking positive thoughts and prayers for you.  I am here if you ever need anyone to talk it out with.   Please stay tough.  

    Kindest Regards,  Patrice

     

    pattiann45

    I would love to see the article on asymptomatic recurrences, if you have it. Thank you!

  • pattiann45
    pattiann45 Member Posts: 22 Member
    Tamlen said:

    pattiann45

    I would love to see the article on asymptomatic recurrences, if you have it. Thank you!

    article

    There are many, but here is one from 2016.

    https://www.tandfonline.com/doi/pdf/10.1080/0284186X.2016.1267396?needAccess=true