Stage 2, oops, no, Stage 4

Tamlen

MoeKay said:

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

 

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.

Tamlen

pattiann45 said:

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/

 

PET scan

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

Tamlen said:

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.

Grade 1 can also spread

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.

SF73

Tamlen said:

PET scan

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.

You don't need whole genome

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

NGS

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.

 

pattiann45

SF73 said:

You don't need whole genome

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/

target testing

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

pattiann45 said:

target testing

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?

My mutations

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. 

barnyardgal

Tamlen said:

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?

Sorry I didn't respond before

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.