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Post-surgery, SBRT, genomic analysis consult

oldbeauty
Posts: 320
Joined: May 2012

Happy to report I am in a good place 6-months after my left lung wedge resection and right apical lung "CyberKnife" radiation for slow-growing bi-lateral nodules.  My follow-up CT was this morning, and the results already posted on my patient portal!!!  I reaffirm the inspiration provided by our late, great friend Donna Faye; no scanxiety this time around. As DF counselled, I eagerly anticipated the scan bc I need the info and worrying doesn't change the facts.  I was firm in my belief it would confirm my feeling of well-being and the success of the treatment.  I opened the test result message immediately and skipped down to the "final impression."  All good; the surgical site is clear, no new nodules and the nuked nodule shrank from 6 mm to 4 mm and the adjacent smaller one was not visible at all today.  Abdomen and pelvis also normal. I go for my 6-month review with my gyn-oncologist in a few weeks, when I am most interested in the doctor's analysis of my genomic/genetic tissue analysis.  I am here today to solicit areas of inquiry I might profitably explore with the doctor.

First, I want to thank whoever it was who posted the link to a very informative article about interpreting genomic indicators at:

https://www.nature.com/articles/s41598-019-54624-x

I don't think there is any "ah hah" nugget in my report but many of you are much more able to interpret these scientific articles so I welcome any feedback.

My surgical tumor sample was sent to CARIS Life Sciences.

I am Mismatch Repair Status - Proficient

I am MSI- Stable

I am Estrogen Receptor (ER) Positive 100%; and Progesterone Receptor (PR) Positive 10%

My Immunochemistry Results are:

MLH1 - positive; MSH2 - positive; MSH6 - positive (No Lynch Syndrome)

PD-L1 (SP142) - Negative

PMS2 - Positive

PTEN - Positive

My Tumor Mutational Burden (TMB) is Low (6)

My Genomic Loss of Heterozygosity (LOH) is - Low (1% of tested genomic segments exhibited LOH) (assay threshhold is > 15%)  

My Cancer-Type Relevant Biomarkers are (in addition to those below) are:

NTRK1/2/3 - mutation not detected; BRCA1 - mutation not detected; POLE - mutation not detected

My Pathogenic (PV) or Likely Pathogenic Alterations (LPV) are:

ARID1A - PV (2 defects: p.Q288 & p.W1686); CTNNB1 - PV; PIK3CA - LPV; PIK3R1 - LPV; PTEN - PV (2 defects: p.H93Y & p.H118fs)

Variants of uncertain signficance were:

BRCA2 and KIT

I gather there was insufficient volume to obtain reliable results for several other genes, including FLT3, which is the copy number alteration (CNA).  Copy number hi/lo can be a prognostic indicator but my results are indeterminate.

From what I can discern from my "studies," some of my results indicate "better" prognosis and some "worse."  Although I am eligible for Keytruda now, I read where the PD-L1 "negative" indicates less efficacy of immunotherapy.

Anyhow, I won't argue with real life experience in that I have lived with endometrioid adenocarcinoma for 16 years, through 6 treatments (surgery x 2, radiation x 3, hormone therapy) and I am NED and feeling fine.

I am glad I did the surgery to get tissue to analyze.  It reinforces, I think, my oncologist's advice that I have an "indolent" variety of cancer that grows slowly.  My doctor is happy with the high ER status saying that gives us more arrows in the quiver down the road. My degraded PR status is due to the progesterone therapy I was on for 4 years.  

I don't know whether the tissue analysis reveals any "explanation" for why this cancer developed in the first place.  All I can do is continue to live a healthy and active life and keep up the Metformin and the supplements my functional medicince specialist prescribes.

Any insight to these results (comments, articles to read, etc.) would be much appreciated.

Best wishes, Oldbeauty

cmb's picture
cmb
Posts: 749
Joined: Jan 2018

I can't comment on the tissue analysis since I was only tested for Lynch Syndrome (which I have). But I'm very glad to read that your CT-scan results look good.

Knowing that you've been dealing with this cancer on and off for 16 years is a testament to your resilience and gives the rest of us hope that we can survive longer than we might have thought possible when first diagnosed. Thanks for continuing to share your journey with us.

Dak82's picture
Dak82
Posts: 92
Joined: Dec 2020

Your test results make sense to me. My major difference from your result:

mis match repair-Deficient

ER and PR both <3

MLH1 and PSM2 both negative but positive for methylation. End result is the same--turned off

Tumor mutational burden-low. 6 I think

MSI in initial tissue pathology, but inconclusive in 2d

It's the dMMR and MSI inconclusive that led my team to seek dostarlimab for my immunotherapy. See previous post for discussion on my cancer not responding to chemo and nodules in both lungs, upper and lower lobes. My oncologist has flat ruled out surgery or radiation. I have read about centers that will attempt to remove nodules but I think I have too many. Most were only 1mm in size but a few were in the 7.5 to 9mm range. They all seem to have emerged while I was undergoing chemo.

So glad you are feeling content!

Deb

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Old Beauty

I think I'm similar to you.   My ER was positive. My PR was positive but week.  I'm MSS stable.  It will be 16 years for me also in September.   I do not have lynch syndrome    They were never able to determine a primary  

Hugs!

Kathy

 

oldbeauty
Posts: 320
Joined: May 2012

Yes, we are "sisters" in more ways than one.  I always identify with you bc we are long time survivors who have recurred more than once.  Long may we reign!  Best wishes, Oldbeauty

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2939
Joined: Mar 2013

oldbeauty - I don't know how I didn't miss this good news!  

I got a call about a year ago that since they were not testing all samples for Lynch in 2012 they wanted to check.  I said YES (it is negative) but I found the list I want to ask about now anyways.  Again, I am sorry I did not see this sooner.  So happy to hear your news.

oldbeauty
Posts: 320
Joined: May 2012

No worries!  I saw my gynonc last week.  The plan is to rescan in 3 months to establish a new baseline.  In the meantime we are on the road soaking up the glorious countryside and art in Western Massachusetts.  Wonderful to be alive in Nature!  Best wishes, Oldbeauty

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

Congrats OldBeauty on your great news! I missed your post as well. I can blame mine on having surgery on this day!!!! lol

So happy for you and for us. We all get to celebrate with you.

Love and Hugs,

Cindi

oldbeauty
Posts: 320
Joined: May 2012

Thanks so much for the well wishes.  Best, Oldbeauty

alicia2020
Posts: 164
Joined: Sep 2020

You are a fine example of what I call "a real trooper!" You have perservered and arrived at a place where you're feeling good! You are to be admired!

Stay well!

😘, Alicia

oldbeauty
Posts: 320
Joined: May 2012

I like to stick around the board to reinforce that any one of us can grab hold of the gold ring for longer than expected.  I fervently hope I am not a unique story, altho' recurrences are not to be desired, of course.  Never count yourself out!  Best wishes, Oldbeauty

alicia2020
Posts: 164
Joined: Sep 2020

It's so important for us to hear success stories and to know of the ability to have it be treated successfully more like a chronic disease. Gives us all great hope!

Enjoy the beauty of Western Massachusetts! One of my favorite places to visit.

❤️❤️❤️, Alicia 

jan9wils's picture
jan9wils
Posts: 173
Joined: Mar 2017

Old Beauty, I'm glad to hear your surgery and cyber-knife treatment went well.

Jan

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