Got these test results from Mayo today. Wondering if anyone knows what it means exactly, is it good or bad??
We received the results of your genetic testing. You elected to participate in the INTERCEPT research protocol. Genetic testing was ordered to look at 83 genes related to hereditary cancer syndromes and was performed through Invitae. Your test results did not identify any pathogenic mutations, meaning we did not identify a single-gene cause for your personal and/or family history of cancer.
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Survivor1965
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Why is not having a genetic component a good thing?
Depending on the future/ science, couldn't it be a plus to have a genetic component if it elucidates a clear treatment plan?
My (61 years young) dad has stage 4 Gleason 9 with ATM gene defect and trying to see the gene defect as a positive for future possibilities with carT, parp, immunotherapies or whatever had scientists ccome up with.
Also agree. My husband had genetic testing like you did and didn't have any mutations. I don't see anything positive about the results. Only about 10% of men who are tested show a genetic mutation, so 90% of advanced prostate cancer patients have terminal illness and no plan--no clinical studies to enroll in which target the mutations--just the basic throw #$%^* at the wall and see what sticks treatment plan so common in the last phases of APC. Good luck to you Survivor1965!
I tend to agree that the DNA analysis is not all that effective. Is it promoted because it is a profitable procedure or because it really leads doctors select a better form of treatment?
From what I have read, many rare cancers are getting treated successfully because DNA analysis indicates the choice of chemo, so that instead of a 1% chance of working, there might be a 50% chance.
So there is a steady stream of good reports in the press about such things. But most ppl with rare cancers just die.
I think a man would be extremely lucky to get a big benefit by tailoring treatment to DNA results. DNA is so complex, there are many "known unknowns" so any benefit is dependent on vague probabilities.
If I'd had DNA analysis that told me I was extremely unlikely to get any cancer, I would still have believed it possible to get cancer. So no point getting out the bottle of champagne for me. My medical examination for Pca began when Psa went above 5.0, 2009, but this was way too late for me.
However, had the DNA analysis been possible BEFORE 2009 when I was diagnosed at 62 with Gleason9, 9 pos samples, aggressive, young man's Pca, then I might have purchased it.
I should had full examination for Pca including biopsy at age 58, 4 years before my diagnosis when Psa was only about 3.0, and I bet they would have found some Pca, but with a lower Gleason score and so EARLY diagnosis was always going to be a better hope than placing hope in any DNA test.
I also think men should be able to have their PG removed when there is no cancer present especially if their brothers and father had a history of it or if family females had Bca or Oa etc. An RP is probably easier to do without Pca present, and some docs brag they can avoid cutting through many nerves, so after such an RP a man fully recovers, is continent, and he can make his wife smile again.
When I told a doc about my idea of pre-emptive strike against Pcsa, he said he could not sell the idea to men. Are men that dumb? Or do doctors see more $$$$$ chasing the Pca horse after it has bolted?
After lots of treatments that suppressed my Pca since 2010 after a failed RP, I am on Lu177 and results are mixed bag, Psa went from 25 to 17 after 2 shots, with doubt now about Lu177 effectiveness, and doc mentioning that I ought to be checked for Brca2 gene, because of family history and I might need PARP inhibitors, so the treatments are far from finished. So DNA is a possibility for me.
The latest and 5th PsMa Ga68 scan said a large drop in PsMa expression has occurred in bone mets and this could be due to less Pca at most mets, or that Pca has just stopped making PsMa, but still alive and well, ie, my Pca in bones is becoming resistant to Lu177. The uncomfortable concept is that pca tends to mutate to defeat whatever the doctors use against it. My oncologist mentioned this to me and he knows of men where nothing ever worked very well for very long, and the Pca killed the man. I know of men where this has happened.
Whether the high-falootin science approach works any better is unknown, but I'll take all that's offered. Because my right hip aches I get cortisone inject next Monday, then EBRT to mets in pelvis and femur next week, and I begin enzalutamide because doc said it increases PsMa expression so it should make next Lu177 more effective. I did have abiraterone which gave me 8 months before chemo and before Lu177, and theory and some trials suggest the chemo and Lu177 has re- sensitised my cancer to either abira or enzal, so they may have a lasting action for some time. I cannot know for how long, or if enzal will have any effect at all; docs say I just ought to try it. OK, I will. In sickness and in health, unto death do us part
I can work around the house still but I had to cease cycling 220km a week some weeks ago, and maybe my hip chose this time to just give up and be a PIA because years ago that's what my knees did, so amoung 3 docs I have, there are two opinions, one says Pca is causing hip pains, one says its arthritis at 72, and other says both are working to make pain. But the fact I have 3 docs interested in my health now is just such a wonder because billions of other ppl have a terrible short and brutal life with treatment only available from a witchdoctor.
But today is a beautiful early autumn day, I got a lot of cement work done on fence and prepared for spreading gravel in parking area in front of house, and despite all my concerns and pains, life is actually good.
Wow what an awesome post! So much info here I had to read it twice and now again. You poor guy you have been thru so much. I would love to talk to you sometime to get a better understanding of it all. And I read a lot here about psma but I don’t really understand it. I get bits and pieces of info but can’t tie it all together. I’m afraid all the meds have affected my mental acuity in general.
The reason why the PsMa Ga 68 scan is now commonly used to assess the Pca status of a patient is that it works for most men who have Psa > 2.0 and rising. Psa is a chemical that is made by both healthy prostate glands and prostate cancer cells, and in 1990s the Psa test gave doctors a better idea of presence of Pca. There's another chemical called PsMa which is made by the cancer. Both these chemicals can be found in the blood stream along with maybe thousands of other chemicals.
Most, but not all men who have Pca will generate these chemicals and the level tells doctors about the level of cancer in a man. The amount of these chemicals varies for a given weight of tumor material, and some men make a high Psa for a small amount of Pca, while some make a low amount of Pca for the same amount of Pca, diagnosis is usually early enough in the high Psa group and diagnosis can be too late in group in group making low Psa, which is where I am.
"Tool late" means the Pca that began at prostate gland has spread at time of diagnosis. "Early enough" means the prostate can be removed, and all cancer is removed with it, and we never see men posting here who have a "successful RP", ie, Radical Prostatectomy that is a somewhat delicate operation but when "successful" it means the all the Pca is removed, and Psa measurement drops to undetectable levels and stays low for the rest of a man's life. I don't know how many men have a good outcome from RP, maybe 40%. But if a small amount of prostate tissue is left behind by the surgeon, in time it can generate Pca because it has the same DNA as the tissue removed which did have Pca.
So the majority at least of men at this group had their Pca spread after the RP, or has spread before RP, so the RP is not an initial indicator that all Pca is gone. I had so much Pca that had spread to form cancer tissue outside the normal volume of prostate gland and docs could not perform RP. So I had radiotherapy EBRT and ADT which is chemical castration, and the fight against the spread of the Pca has gone on since 2010.
When a PsMa scan is performed, a solution that looks like water is injected to a vein and it contains a very weak radioactive chemical containing Gallium and this is harmless. There's another harmless chemical called a "ligand" which is in the solution, and the action of ligand is to hook onto the Gallium, and hook onto where a Pca tumor is generating PsMa, and for some time, the Ga lingers around and within the tumour, during blood circulation.
The Ga generates enough radioactivity to generate a PET image that
can be best image for where the cancer is located, and a CT scan is also made to augment the information, and so the PsMa Ga68 PET / CT scan is a good tool for docs to see Pca, and then choose treatment.
So to know as much as possible about your Pca during treatment you need regular Psa tests and a PsMa scan if the Psa level is high enough for PsMa scan to make an image of a small spot of Pca. Scans just DO NOT tell you that you have no spread of Pca. Where no spread is found on a scan, it just means that if there is spread, the spots of spread are big enough to make an image. There could be hundreds of those.
The biggest show up earliest. The PsMa scan method came to Australia in about 2015, and I had my first ( of total now of 5 atup usd $500 each ) in 2016, where two lymph nodes in upper chest showed up with a clear image of my prostate gland that was totally riddled with Pca despite previous EBRT and 5 years of ADT.
A year later, a second PsMa scan showed 15 spreads spots, called "mets" aka metastasies, with a few in my bones, and another year on my 3rd PsMa scan showed countless mets, and Psa was only 12 at start of Docetaxel which did not work.
I have ongoing treatment with Lu177 that works just like the Ga68 Psma scan method, but instead of tame ga68, the radioactive chemical is Lutetium 177, which is another rare metal on Earth and its treated in a reactor to make into a "radioactive isotope" of the lutetium metal.
It is combined with chlorine to make lutetium chloride that is dissolved in water just like sodium chloride dissolves to make salt water.
Some men get a very good result with Lu177, and some don't, and I do not know which group I am in, because so far Psa has only moved from 25 before Lu177 to 17 after 2 cycles of 8 weeks each.
I have pain in a hip but its not bad enough for a wheelchair, and am getting a cortisone inject on Monday and starting 5 days of RT to my hip area where there are two "mets" each about 1cm dia in pelvis and femur.
I never suffered mental problems from ADT and l am still continent.
I farewelled my Dear Rodger, and I have total sexual extermination, so cannot perform the delightful procedure of temporary pussy destruction that quite a number of women expect from any man they date. Most I meet are over 50, and have become allergic to "vibrant intimacy" with any man at all. So I ain't missing much by not having a female partner; I survive alone quite well, despite being 125% heterosexual. My dentist is a lady of 50, so much better than all the male dentists I went to previously, so I love women. The nurses seem like goddesses, or at least angels...…
Tomorrow I have 2 tonnes of gravel to spread out with a shovel and then flatten with a straight edge, then vibrate it down flat and hard with a "plate vibrator" gadget which another man will bring. This will make a car space for a live in carer if I get one. I have to work to prepare for my decline, and although I think often of existential issues, I like to stay so busy I don't have time to be fatigued, except when I put a head on pillow at night.
I must now away to café for lunch and good humor with a few I know....
I hope you can figure out a way forward, and I hope for the best for you, Patrick Turner.
There are 2 tests that need to be run. It looks like your Germline test were run, DNA you’re born with didn’t cause cancer. But there is also the somatic version which is cDNA (cancer DNA) which is called somatic version. Anotherwords, Epigenetics. Genes changed over time due to many factors. How you fight this doesn’t matter if you were born with it or it showed up later from all kinds of reasons (toxins, stress, diet,etc). What matters is what kind it is...like BRCA2 is very aggressive for guys! So now ask for that version from Gardant360.
Although I just saw this post today from a year ago, I wanted to comment. My husband has prostate cancer and was eligible for genetic testing since prostate cancer ran in his family. You ask if it's a good thing if all tests were negative. Yes, that is - no other problems reared their ugly heads!
My husband's genetic testing showed that he had a mutation of his thyroid called an RET mutation which is very dangerous. IF you get thyroid cancer you get medullary thyroid cancer MTS which is very aggressive and not very treatable. Not a good thing. It was recommended he have his thyroid removed... not now! The sadder part is that our children need to be tested and our 44 year old daughter has been and has the RET mutation. It is recommended she have her thyroid removed. Our son has not been tested as yet.
So, if it seems to me it's a very good ting is you had 83 genes tested and none come back as mutated.
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