Stage 2, oops, no, Stage 4

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.

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.

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 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?

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.