So frustrating! I would give the team that feedback. It doesn’t make sense to wait to send that!
I can’t remember how recent his MRI is, but he will need a recent one. MRI appointments can be a long wait in some areas, so if he needs a more recent one before starting radiation therapy, I would get that scheduled asap.
We had decipher done. Insurance wouldn’t cover and it’s many thousands. But somehow we just paid $36. I’m not sure how. But I think my phase 3 trial may have paid or the company who does the test itself might have covered.
Our case might have been different though - it didn’t impact treatment but moreso whether my son will be at risk. I didn’t want it.
We had to meet with the medical oncologist who ordered it. They’re different than the radiation oncologist (my cancer doctor).
Perhaps the hospital’s policies or insurance coverage drove the timing.
I also think it’s newer so may not be in the original standard of care level.
I feel that H got a kind of cookbook answer from rad onc, with an assumption that he couldn’t do the proton form, without decipher. Which we didn’t know about. Just an assumption of the 28 course rad and six months ADT. Meanwhile last week we met with the top surgeon from the best rated prostate cancer center in the state and had a much different experience. Really comprehensive, all aspects covered, just a different experience than with his urologist and the rad doc. So he’s going with surgery and feels good about it – all things considered.
That is such a positive outcome! We’re pulling for you both!
Same to you!
Using the biopsy tissue samples, the Decipher test measures how likely the patient’s cancer is to metastasize in 5 years, that’s it. Data show that Decipher results impact the type of treatment docs recommend in about 50% of cases. Decipher is in the NCCN guidelines, so it is standard of care. So, Medicare and many insurance companies cover it. Decipher isn’t helpful to assess genetic risk of sons. For that, one needs a genetic germline testing panel, which is also in the NCCN guidelines.
perhaps I’m not understanding your post correctly but they say this:
Decipher Prostate is a tissue-based genomic test that provides actionable information for treatment decision-making across the spectrum of prostate cancer.
https://decipherbio.com/
My husband’s oncologist and urologist did NOT recommend any further testing and just proceeded with beam and brachytherapy radiation plus Orgovyx (hormone therapy). It was pretty brutal, but that was what they agreed was best. UCSF also didn’t recommend any further testing. I guess when you have Gleason score of 4+4, they are pretty sure of what they believe is best. Fortunately, for H, it was all within the prostate.
You are right, bad choice of words. I will edit my post.
Treatments and recommendations are changing in prostate cancer, like in many cancers. Decipher is relatively new. Brachytherapy for prostate cancer is decreasing as older rad oncs who used it retire. Some of the best prostate cancer treatment centers don’t have anyone doing brachytherapy anymore. Example is Duke, where they refer anyone who wants brachytherapy to Mt Sinai in NYC.
H’s oncologist brought brachytherapy to HI. He’s our state’s expert in it. He’s written several journal articles about it and it’s effectivesss.
Maybe we had a different one. I thought it was decipher. My wife was definitely pushing decipher but I thought for purposes of my son. It was some sort of genetic test - and not sure how it got paid for but I know insurance said no.
Will come back tomorrow with the name - i just emailed her to ask.
I wasn’t suggesting brachytherapy isn’t effective. It is effective and is still in the NCCN guidelines. It is declining for several reasons. First, there have been significant improvements in both prostatectomy surgery (robotic assisted) and radiation therapy (shorter treatments).
There are also financial factors that are impacting brachytherapy use…surgery and radiation therapy are less time intensive for staff than brachytherapy. Also brachytherapy is reimbursed by Medicare and insurance companies at a lower rate than surgery and radiation, so when coupled with the fact that it’s more time intensive for the cancer center…well fewer rad oncs want to do it. Once procedures start declining, the young rad oncs don’t learn it well enough to feel comfortable adopting brachytherapy. Hence the decrease in use. One knows things aren’t looking good for a treatment and it’s usage pattern when a premier cancer center like Duke doesn’t have anyone who will do it (for prostate cancer) and the closest center they recommend is in NYC.
Yes, I had read that reimbursements for brachytherapy are low, which makes it unattractive to medical centers. In any case, the urologist H has done a lot of them and very good at it.
It’s great that he/docs have been able to determine the best path for his situation. Best wishes as you proceed with the next steps.
Thank you!
At the appointment yesterday, they took another psa test, we got the results today. In 3 months it has gone up another point.
Unrelated to that, we read through my notes and did a bit of clarifying research in the Mayo Clinic information pages. (Not his doctors, but I trust Mayo). They had a paragraph about recurrence that scared me – 1 in 3 prostate cancer patients have recurrence? But there was no study cited. DH found another source that said 3-5 of every ten patients have recurrence. So that kinda threw us from thinking surgery would be a once and done kinda proposition. We’ll ask his doctors, of course.
Yes. I had this realization a couple weeks ago. I had heard the 97% ten year survival rate as cancer-free, when in fact many have additional treatment. The good news for our guys is that treatment continues to be successful in the vast majority of cases. But it’s daunting to know that this may be a longer process than we’d originally understood. His surgeon is very confident that anything that should arise (if it does) will be surmountable. I am glad that he’s in good hands.
exactly – we hadn’t considered the survival rate as anything other than one course of treatment, which was silly of us since my mom, SIL, and IL have all survived their cancers but not without recurrence (which was then survived). I believe upthread, someone has already mentioned this and I just didn’t have enough context to really process it correctly. A good warning to pay more attention.