I am boiling angry, but I am pretty sure it is not about the most important thing.
My Mo talked with me in June 2019 about genetic testing. Jefferson contacted the urologist who performed the Biopsy in 2017, received specimens and submitted them in ear
ly July. Results were received by the hospital on July 25th.
No one told me, there is nothing in the portal almost 3 months later. I decided last week to discuss enhanced gene testing with them this week. My kids refer to synchronicity. I was filing medicare statements this weekend and noticed that there is a charge in July for Foundation One testing. WTF. I called to ask to see and hear about the test results. They are below. I don't know much about the interpretation, but there are 10 things listed to learn about.
Questions that come to mind in the first reading. 1. We now know that I have metastatic disease. Is the biopsy tissue adequate for learning as much as we can? 2. Should tissue be available from the removed prostate? Would that tell us any more than the biopsy cores? 3. Two years later, is it likely that these mutations are all there are? 4. Why the expletive didn't they let me know and give me a copy? 5. Am I being too harsh in thinking they read the top line of a 35-page report which says no reportable alterations with diagnostic (CDx) Clams and did not even look at the rest?
My question is should I forget about all of the above emotional ventings? Where can I go to get help figuring out what to do about answering the medical questions I have and making sure the information is as up to date as it can be, given the progression of the disease? Being angry they put this in a drawer will pass. The Advanced Pca will not.
Any comments or advice are appreciated?
FoundationOne®CDx
ORDERING PHYSICIAN Kelly, William Kevin MEDICAL FACILITY Thomas Jefferson University ADDITIONAL RECIPIENT None
The particular Foundation One test you got is used to test for genes that may apply to many cancer types. I'm not a doctor, but your low number of matches do not seem to me to be particularly common in the prostate cancer world. That could be a good thing.
Here's a link to the page for the Foundation One test you got.
If you click on the box called "Gene List", you will see an overview list of the most common validated matches, cancer types, and treatment agents that have been FDA approved. Personally, I don't see any that really jump out in terms of prostate cancer, for the specific genetic things reported on your results. If in doubt, of course, ask your doctor.
Meanwhile, Good Luck with the anxiety and frustration and anger.
I'm surprised they did a Foundation One report on your biopsy cores at all.
You are right that you want the most recent metastatic tumor analyzed (which is why prostate tissue is useless for this purpose). Metastatic tissue has a somewhat different genomic profile from prostate tissue. Sometimes, different tumors will have different errors because the mutations crop up heterogeneously.
A liquid biopsy, like Guardant 360, gets around the problem of heterogeneity by being sort of a weighted average of all the tumors. The problem is that tumors that are currently less active may not show up.
What are the therapies with clinical benefit ? I'm not aware of any approved therapies for those mutations for prostate cancer (unless they mean "off-label" use for therapies approved for other cancers).
To Tall_Allen, Philly13, and anyone looking at F1CDx testing:
I skimmed through the 40 page document cited by Charles (ctarleton) above. "Prostate" was mentioned a few times, but never in the context of treatment. If I understood it correctly, the context was simply to state which particular tests for gene alterations and transcription changes were validated with which particular types of cancer (page 6-7). Three of the tests used had been validated for prostate cancer, meaning (I think) that if biopsy tissue from a prostate tumor were analyzed by any of those three tests, the tests would detect the presence of particular genetic changes.
It looked to me like "Table 1. Companion diagnostic indications" on page 1 and 2 summarized all of the treatments that the study authors consider to be validated for the cancer types and biomarkers (gene alterations or amplifications). Prostate cancer does not appear in that table. In other words, as far as the Foundation One CDx (F1CDx) testing system is concerned, and assuming that the document cited by Charles is still the guiding document in producing F1CDx reports, it appears that nothing in the genetic testing reports that they can produce is known to have any targeted treatment recommendations for prostate cancer patients. The F1CDx test cannot produce any treatment suggestions for prostate cancer patients. I would think it's only value in testing of prostate tissue would be for researchers investigating prostate cancer genetics or working on new, still unapproved treatments in the laboratory.
Have I missed something? (It won't be the first time.)
Subject to further analysis that seems correct. Pca is mentioned in some of the boxes on the report. I don't see conlusions. My interpretation is there are questions.
There is take-home value in learning anything. What this taught me is to research current information about the tests that are available, and to push for the latest and greatest genetic information available. My gut about this test after skimming results was first, what good is a test from November 6, 2017, from cores, and second, that whatever information might have value "tomorrow." I think our goals should always be focused on tomorrow because the next day will bring an effective and targeted treatment closer. I am not visualizing a cure, but progress will accelerate on the ability to play whack-a-mole.
Thanks for looking at all that. As far as I know, there are three popular genomic tests of prostate biopsy tissue - Oncotype Dx, Prolaris and Decipher. The purpose of all three is to help those sitting on a fence about Active Surveillance. (Decipher also tests prostatectomy specimen for help deciding about salvage radiation). I can't think of any purpose useful to the advanced pc patient for such a test. i do see the purpose to the company (Foundation One) as basic research so that it can market its test competing with the other big three players. But why would Philly13 be charged for it? Also, as with any clinical trial, the patient has to be fully informed and sign off on it.
I'm guessing that the medical oncologist who suggested and ordered the tests for you really was trying to do the right thing. There's a good chance that he wouldn't have known what the results meant other than that the testing lab said, "no reportable alterations". As medical sophistication and scientific complexity have gotten deeper and deeper over the years, the specialists rely more and more on other specialists to draw conclusions about the meanings of specialized tests. The MO may have thought he was doing the right thing by ordering the test for you and then again by not disturbing you with the report because he didn't see any actionable outcome. There's a decent chance that a whole lot of the patients he sees would agree. An oncologist I know told me that half of his patients would tell him - Do whatever you have to do but don't tell me about it. I don't want to know.
Personally, I think you're right to want to get a copy of the report, and I think it was a genuine oversight of the MO to not tell you, at least, that the testing was done and didn't find anything actionable. I'd let him know that you're the kind of person who wants to learn as much as possible about your condition and he should please let you know in future if a new test has been done and to get a copy of the report for you.
Now for the results themselves.If you search Pubmed I think you'll find that all of the unusual genetic activity (e.g., "amplification", "rearrangement", etc. of particular genes) is sometimes associated with cancer and may suggest treatment targets for some types of cancers, but I speculate (I'm not expert on this) that implications for prostate cancer treatment are not clearly established. If you find out otherwise, or if someone on this or another forum knows something relevant, you can pursue it. You might be able to get the MO to pursue it with you or you might need a consultation with a genuine medical scientist at one of the research hospitals.
For myself, I think that molecular biology as fascinating. If you have the inclination to study it and truly understand what things like "gene amplification", "rearrangement of introns", etc. actually mean, you may be looking at a few hundred hours of very interesting study.
Thanks. I do not think that anyone acted maliciously. My note to the board was partially venting, mixed with questions which I hope were mostly intelligent to help put things in perspective. I was boiling mad but I am over that.
Thye know that I ask a lot of questions and like to get as close to understanidng the reasons why we are adopting strategies. The nurse I spoke to acknowledged that I like to stay on top. My first decision about treatment 5 months after the RP turned out to be a poorly calculated risk that might have cost me in the long run. Since that time, I believe my exchanges with Doctors has been pretty good. I would bet he ver saw the 35 page test and that one of his top assistants made the decision it had no value. She may be right about the ultimate value, but no discussing it with me, particularly since they should know me by now, was not a good decision. The background information could have value some day.
My take away at this moment in time is to make sure we go to the next level of genetic testing on the lesions that are currently on my skeleton. I don't think they will be against that.
The CRNP that deals with me on a regular basis is not well suited to my style of communicating. I am reluctant to tell a Dr who I like that his top lieutenant is not "good" enough for me. I will avoid seeing her and try to communicate with the Doc.
I had several hundred employees since I was 27 and my father died from Prostate Cancer. I got used to having a certain amount of control and being the final word. I am adjusting to Pca and not having the first word or the last word. I am doing pretty good. I never respond in real time to communications that bother me. I always take it home, digest it, let it rattle around, reach out to this group, and then go back with organized questions.
The report should have a page with possible therapies approved by the FDA and if there are clinical trials. Your report says there are 9 possible therapies and 26 possible clinical trials. You could try to to get the full report from the hospital and send it to your MO.
Your conclusion about the 9 therapies and 26 trials sounds logical. However, after skimming the document cited by Charles (ctarleton) above, I'm thinking that none of the 9 possible therapies and the 26 possible clinical trials mentioned in the report apply to prostate cancer patients. I suspect that those numbers mean that the sum of all possible therapies for patients with any kind of cancer is 9, and the number of clinical trials for those therapies is 26. But none of the possible therapies have been validated for prostate cancer patients, and no cancer type is mentioned in Philly's report.
This is not a criticism of Foundation One's CDx test, but it may be the case that the Medical Oncologist who ordered the test for Philly's didn't fully understand what he was going to get.
See my reply to Tall_Allen for an explanation of this.
I understand your desire to tap into “genetic testing” and wring as much information out of it as you can - it’s a pretty natural response when dealing with a very uncertain disease.
I opted for Decipher testing of PCa from my prostate post-RRP with much the same motivation, and on the whole have been happy with the results which are very PCa-specific. If you search the Decipher site for the example GRID report, you’ll get a good idea of the sort of prognostic information that Decipher produces.
But Tall Allan is right that once you have metastatic activity, the prostate is yesterday’s story... I felt it was worth replying to you though because the real thing I have learned about Decipher is that there is a shortage of large scale studies linking PCa genetic analysis to prognostic and treatment outcomes. Decipher is the best of the three big PCa genetic tests in terms of the number of correlations available, and even these are still pretty few and far between. Decipher is working to have specimens from some important trials (like RTOG9601) retrieved and analysed, and some new trials are incorporating Decipher in their entry analysis, but it’s going to be a few years before much reliability can be placed on this testing, beyond simple decisions like “observe or treat?”
And that doesn’t suite your timetable... or mine...
My husband has had several attempts to find actionable mutations over the past five years. Because of the doctors' reluctance to attempt to biopsy the tumorous nodes snuggled between aorta and spine, CTC blood tests were used. None of his mutations were deemed actionable at the time. Because of family cancer history, it was important to my children to learn that there were no inherited mutant genes. The tests told us what not to waste energy and money on. I just wish that they were done earlier.
I wish I knew what in the heck my Guardant360 liquid biopsy results were. My MO says they( that lab test) found no genetic bio markers in my cancer blood that indicated ctDNA mutation tumors. He will explain more details on Dec10th rtn visit. Oh boy I can’t wait. I understand that those results do mean that I do not have ctDNA mutant death cells, yet. Assuring? I have no idea.
"I am reluctant to tell a Dr who I like that his top lieutenant is not "good" enough for me. I will avoid seeing her and try to communicate with the Doc."
Hey man..... it is what it is........ So tell your Dr. that his top lieutenant is so stupid that she once tried to drown a fish......
It probably no use me telling you to calm down, might make things worse.
But how much did all those tests cost you? If the cost was huge, and no benefits were found, I would not be happy either.
But maybe there are benefits, because treatments may be better matched to your Pca.
If any doctor had offered me opportunity for DNA testing I would have been happy to pay, and my docs would find out more, maybe give some additional therapy to the empirical therapy I have had up to now, and thus got a better result fighting the Pca. And the DNA analysis may have to be done later if Pca increases and Psa rises and if it is not PsMa avid, and I could have some big expenses for the analysis and whatever is used to treat Pca. It may all fail, but still be worth a try.
I have to admit I only skimmed the responses above - at this point in my journey I don't need to understand, but I saved the post to refer to it later if genetic testing comes to me.
But my understanding of your question is "did they do wrong by not giving you all the information they had?"
My answer would be 'yes, they screwed up'.
It seems your other question is, "am I right to be this upset?"
I can only answer the question personally. If it were me, I would be 'romping, stomping MAD! Everything in my chart belongs to me. NO ONE has any right to withhold anything there from me. I would have demanded that heads roll!
Were you right in your response? I dunno... let me know if they send the sheriff for you. That might make me quiet down a little dealing with my doctors.
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