CSN Login
Members Online: 1

You are here

Stage 2, oops, no, Stage 4

Tamlen's picture
Tamlen
Posts: 150
Joined: Jan 2018

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.

derMaus's picture
derMaus
Posts: 476
Joined: Nov 2016

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's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

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's picture
Tamlen
Posts: 150
Joined: Jan 2018

....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's picture
derMaus
Posts: 476
Joined: Nov 2016

They didn't do a CT before surgery ?

Tamlen's picture
Tamlen
Posts: 150
Joined: Jan 2018

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

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
Posts: 130
Joined: Oct 2017

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.

Tamlen's picture
Tamlen
Posts: 150
Joined: Jan 2018

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?

barnyardgal
Posts: 130
Joined: Oct 2017

Sorry I didn't respond before. I have regular endometrial adenocarcinoma. Stage 3a, grade 2. My regular gynecologist did it before referring me to the gynecologist oncologist. I have seen some others get it, but it definitely wasn't reliable for me.

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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
Posts: 171
Joined: May 2012

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

Tamlen's picture
Tamlen
Posts: 150
Joined: Jan 2018

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.

MrsBerry
Posts: 102
Joined: Dec 2017

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.

Tamlen's picture
Tamlen
Posts: 150
Joined: Jan 2018

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.

pattiann45
Posts: 22
Joined: Sep 2010

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's picture
derMaus
Posts: 476
Joined: Nov 2016

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

Tamlen's picture
Tamlen
Posts: 150
Joined: Jan 2018

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

pattiann45
Posts: 22
Joined: Sep 2010

There are many, but here is one from 2016.

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

LisaPizza's picture
LisaPizza
Posts: 159
Joined: Feb 2018

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
Posts: 164
Joined: Feb 2004

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

 

Tamlen's picture
Tamlen
Posts: 150
Joined: Jan 2018

MoeKay, you read my mind. I left a message at the rad onc's office to ask whether the positive lung nodules are Grade 1. I also requested an appointment for a second opinion on the pathology from one of NCCN's Comprehensive Cancer Centers in my region.

I said almost your exact words to my husband on Friday, only mine had a bit more anger ;) "How the hell can I make an informed decision about treatment if the landscape of my diagnosis keeps shifting each time I press for information that paints a fuller picture of what I'm facing?" Now, I know that cancer isn't static, but I do believe, if I have what my gyn onc called a "glacially slow-growing" Grade 1, that 4-6 weeks after surgery I should have had the information I'm now getting only because I pushed.

I will say that the original biopsy during my January D&C also said Grade 1. It was done at a different hospital and by a different pathologist than where my hysterectomy was done. So I've got two path reports saying Grade 1.

SF73
Posts: 207
Joined: Oct 2017

After my hysterectomy, I was staged 2 (less than 50% invasion of the myometrium and minimum invasion of the cervix) and grade 1-2. Clean fallopian tubes but scant number of atypical cells in the pelvic wash. Even though my ovaries were left in (I am 44 years old) and no lymph nodes were sampled, my oncologist was not concerned about the positive pelvic wash. After reading a few papers that suggest how pelvic wash is not informative for endometrial cancer, I decided to agree with him without seeking a second opinion. In three short months, I managed to grow 6.9 cm tumor on my right ovary and have microscopic spread to my omentum. Apparently, they don't stage recurrences but if it was staged, I would be Stage IV B. I had another surgery to remove the ovaries, the mass, and my omentum. 

The speed at which the tumor grew was concerning. Clean as a whistle at the time of the surgery and a 6.9 cm tumor in 3 months! I wanted to make sure I knew what I was dealing with. I got a second opinion on the pathology report to see if it was indeed endometrioid histology and grade 1-2. The second report (from another institution, UCSF) came back with the same histology, endometrioid, and downgraded to 1 not 1-2. I would join others in recommending you to get a second opinion on the tumor grading. But don't be surprised if the grade is still low. It seems low grade tumors can be as mobile as others.

pattiann45
Posts: 22
Joined: Sep 2010

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's picture
Tamlen
Posts: 150
Joined: Jan 2018

I've been trying to get a PET scan scheduled for two weeks, ever since the CT showed lung nodules. I'm extremely claustrophobic and warned my gyn onc about this when she scheduled the PET scan, and her reply was that the PET scan machine is "just a big wide table, like a bone scan machine," and I shouldn't have any problem with it. When I arrived for the scan, I asked to see the machine first, since I couldn't find any online images that looked like what my gyn onc described. Sure enough, as you all know from experience, it's essentially like an MRI, not a bone scan. I asked for a dry run before they irradiated me and I couldn't stay in it for 5 seconds. So it was cancelled and I've been requesting that I be scheduled for one at the only facility in my state where they can do sedated PET scans. I'll be calling again this morning, because I want the PET before chemo so we have a good baseline. Can't shake the feeling that my gyn onc isn't really paying attention or is overwhelmed by something else in her life/work.

I've been following the work of the Cancer Genome Atlas and the Pan-Cancer Atlas, along with their announcement a few weeks ago. But I hadn't seen the two articles you shared and found them very helpful, thank you.

Do you have any idea about the cost of NGS? Is NGS part of what Foundation One does? I'm well insured but doubt it would be covered.

SF73
Posts: 207
Joined: Oct 2017

You don't need whole genome sequencing to get this classification. Targeted testing can achieve the same thing. I had UCSF 500 testing (similar to Foundation One testing but cheaper since my insurance denied paying for genomic profiling) I think Foundation One costs about 5000-7000. UCSF costs about 1200. If there are good research universities in your area, you should check their pricing.

Here is another paper in the same vein as the ones MoeKay posted. This really helped me understand how the researchers are thinking about categories of endometrial cancer beyond Type 1 and Type 2.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3704730/

pattiann45
Posts: 22
Joined: Sep 2010

SF73,

 

How many genes did you have profiled?  I had 125.  Out of the 125 had 20 mutations.  I am MSI-H, with a high mutational load due to a loss of MSH2.  Do you know anything about your molecular class?

SF73
Posts: 207
Joined: Oct 2017

Hello Pattiann45

The results of the genomic profiling of my tumor only came when I was done with chemo. They found out that I have the POLE exonuclease domain mutations. Up to 10% of Endometrial Cancer patients have this mutation. Of the 479 genes they checked, I had no germline alteration (nothing hereditary) and 110 somatic mutations! POLE mutations lead to ultra high mutation rates. As you mention in your post, they are generally associated with good prognosis (though that does not agree with the dramatic recurrence I had in 3 months). Like MSI-H, immunotherapies may be an option for people with POLE mutations. But my oncologist said she made this argument for another patient with POLE mutation and the insurance company did NOT cover the treatment. I cannot believe that we have to fight the insurance companies to get potentially life saving treatments. My report states " Microsatellite instability analysis performed with MSISensor revealed no evidence of MSI and 0 of 993 tested microsatellites were found to be unstable" However  MSH2 and MSH3 are listed in the list of "additional non-synonymous somatic mutations". Not really sure how to interpret that. 

Some other example somatic mutations I have: PTEN, AKT1, AKT3, PIK3CA (all related to the PI3K/AKT1/MTOR Signaling. So good thing I am on Metformin)

Others: RASA1, APC, VEGFA, ARID1A, BRCA1, BRCA2 etc etc..

The list is so long. I don't know if the mutation in POLE is causing all the other mutations randomly or each and every mutated gene has a meaning and should be researched. What do you do, pattiann45? It seems you have thought about this longer than I have. 

pattiann45
Posts: 22
Joined: Sep 2010

NGS testing.  I am not sure about the cost, but I think that out of pocket would be a couple of thousand?  You can always email foundation one and inquire about cost.  Given the fact that this has advanced to the lungs, I would think that they would cover it. I also think that if you are at a good cancer center that they would speak with you about this.  I am not sure where you are receiving care, but I believe that getting care from a progressive clinic (MD Anderson/Sloan) would be a good idea.  You could always get the opinion, and they could find someone locally to manage your care.  Another thing that you can do is inquire about your pathology.  Usually they would have already told you but when they do the IHC they look for what is referred to as mismatch repair deficiency, and if you have this they encourage you to have genetic testing because it may be caused by Lynch syndrome.  If you did have this on your IHC there is a good chance that you that you would be MSI-H, and this molecular class responds well to immunotherapy. I am glad that you are having the PET and totally understand the whole claustrophobic thing, as I also have this myself. Further, I am glad the information was helpful, they are really making some breakthroughs right now.  I am on the TCGA site a whole lot, all of the cases are public information and I have taught myself how to query the system.  I have observed what they are talking about with the different molecular classes.  It may seem crazy that I do all of this, but I have come to find out that it is important for me to understand this all in order to advocate for appropriate care.  I won't get started on how I think that EC has been neglected, and that there is so much MORE that the experts could be doing to prognosticate for patients.  That for another time.  But, again, keep in mind those clinical trials, and the great statistics on immunotherapy.  I sincerely wish you the very best.

 

Subscribe to Comments for "Stage 2, oops, no, Stage 4"