Newly Diagnosed 4+3 with questions

Welcome to our club, Gardenweld. Doing a bone scan at this point is well within standard of care...it probably won't show anything--but it's part of the basic diagnostic process.

Here are some things to do promptly:

Ask your doctor to have your slides sent to Johns Hopkins for a second opinion. Epstein's pathology lab there does nothing but prostate slides--and they are the last word. With their opinion, you'll know what you're dealing with.

After that, know this: If there is a high certainty that the cancer is organ confined, the cure is within reasonable grasp. Yes, cure. PC is slow growing. That is both blessing and curse: Yes, you are "high intermediate risk" with your 4+3....but since it's only been a relatively short time that it reared up, it being slow growing means it may not have done much. That's the blessing. The curse is, that it's not difficult to get blase about it because it's slow growing.

I was 56 at diagnosis...and I'm just over 6 years from treatment, and I consider myself cured. My PSA is undetectable, and I have no obvious side effects.

It's not a bad idea to get a consult at MSK--and if you do that, make sure you visit with specialists in the different treatment modes. Besides surgery, there are multiple radiation choices..and each kind has it's own specialists.

Just know this: You do have time to slow down, take a deep breath, and do your due diligence on the different choices for treatment. Each one has it's own risk profile, it's own immediate vs long term potential side effects, and it's own demand for treatment and recuperation time. The good news is...if you're proven to be organ confined, they can all cure you. The bad news is....they can all cure you, which can be maddening.

Keep coming in, keep asking questions, go get your scans done and start making consultation appointments. Make a list of questions to ask at your appointments, and get copies of everything. And then, breathe. It's not a death sentence.

Welcome to the Forum GW! With regard to your concern that a G 9 (4+3) biopsy is just below the high-risk Gleason Grade Group, treatment decisions do give great weight to the most serious (highest) Gleason score, as you probably know. However, if we take a patient with your profile who chooses the surgery route, the post-op, definitive Gleason score would be based on large samples taken throughout the entire prostate, so it is possible his G score could be downgraded to G7 (3+4). But yes, those choosing RT have to be guided by the highest-scored lesion in their biopsy. Roughly 1/3 of patients are downgraded and 1/3 upgraded among those choosing surgery. (I'm not saying surgery is a better treatment choice, only that one's biopsy Gleason score is that of the tissue taken and may or may not represent one's actual G score.)

Bone scans are usually routinely done at G7 (4+3) and above; however, your PSA bodes well for it coming back negative. The MRI and bone scan will give your docs some indication as to whether your PCa is prostate-confined, which I think is likely. This may influence your treatment decision.

As Halbert pointed out, getting a 2nd opinion on one's biopsy results from an expert in prostate pathology (like Dr. J. Epstein at Johns Hopkins) is frequently done and is a very good idea. If you do, Dr. Epstein advises one to have all biopsy slides sent to him and not just the one's in which lesions were seen, since lesions are sometimes missed. (Note that a confirmation of G7 (4+3) speaks only to the lesions found, and not to one's prostate-wide G score, as I mentioned above.)

Whether or not PCa recurs after primary treatment is, based on my reading of the literature, much more strongly correlated with whether it is prostate-confined or not, rather than the Gleason score. Another related metric can be had with a genomics test (such as OncotypeDx or Decipher Biopsy). These tests look at your tumor's RNA and give you an estimate of the risk (low, average, or high) of your cancer metastasizing within 5 years. This risk has also been shown to cut across all Gleason groups For example, I was a G9 (4+5), but low risk for mets according to my Decipher test result. You can discuss with your docs the value of a genomics test for met risk in choosing a treatment of your PCa.

All the best,

Djin

halbert said...
The good news is...if you're proven to be organ confined, they can all cure you. The bad news is....they can all cure you, which can be maddening.

How will they know if it's organ-confined? I've read about people having surgery and the PSA remaining high or undergoing radiation and then needing hormones.

GW--Don't get ahead of yourself. If you go with surgery (which is not always the best choice), then they will examine the entire gland in the pathology lab, along with surrounding tissue that they remove (lymph nodes etc), and that examination will include an opinion about whether the tumors are organ confined.

The MRI and bone scans also give some level of opinion on that.

Yes, if the cancer is not organ confined, then adjuvant radiation and/or hormone therapy is possibly in the future. The need for it is determined by what happens to the PSA after surgery. If it goes non-detectable, and stays there (it's checked regularly for the rest of your life), then nothing else is needed.

But...again...don't get ahead of yourself. As you get the scans done, the knowledge of whether it is, or is not, likely organ confined will become clear. THEN you make a treatment decision. Not before. Don't listen to a urologist (who is a surgeon), tell you to schedule surgery right away. Don't listen when he tells you "surgery after radiation is not possible" (a classic sales tactic to convince you to not have radiation).

Slow down. Take a deep breath.

Garden, welcome to the forum. Excellent advice above, i don't have much to add. One comment...

The suggestion by many above to send your slides to Dr Epstein at Johns Hopkins is an excellent one., i'd say almost an imperative. And i agree 1000%. One thing you should be aware of.... If you are going to seek an appointment at MSK, they will want their own pathologists to examine the slides, and if i recall correctly, they want it done before your appointment. So Sending the slides to Epstein might delay that. Maybe get your appointment set up at MSK, send the slides to them as they request it, and then send the slides to Epstein afterwards as a triple check.
Good luck

Hi GW,

Keep in mind that if you choose surgery, your choice of a surgeon is the most important factor in ensuring the best chances of good outcomes. Don't be afraid to ask surgeons you interview their personal stats for three categories of outcomes: oncological, continence, and potency (erections) for men with your PCa status (Gleason score, number and location of lesions, imaging results, etc.) Ask specifically about the likelihood of the surgeon being able to spare one or both neurovascular bundles given your lesion locations. These bundles run along the top of the prostate and control blood flow to the penis chambers that control erections. For robotic surgery, I and many other would recommend you get the best surgeon you can, ideally one with at least 1000 procedures.

The major adverse findings that may be brought to light after surgery are:

Metastasis
Lymph node invasion: one or more of the removed lymph nodes results positive for PCa

Local Spread
Seminal vesicle invasion: the PCa has spread into one or both seminal vesicles, which are generally removed with the prostate.
Positive surgical margin(s): the can occur when the surgeon would have had to cut too wide into adjacent structures to remove all the cancer, resulting in some tissue (often microscopically small amounts) being left behind. Positive margins can also result from surgeon error. (Percent of procedures resulting in positive margins is one metric used when a uro is learning to do prostatectomies. A low percentage presumes that these were unavoidable cases.)
Lymphovascular invasion: PCa has invaded into the small lymph and blood vessels within the prostate. These may have been paths of escape for cells with metastatic potential or local spread. Only time will tell if micromets were established outside the prostate before one's PCa was diagnosed.
Extraprostatic (or extracapsular) extension: PCa extended into or, more commonly, through the thin capsule around the prostate.
Bladder neck invasion -- an example where the surgeon may even be able to see or feel that the cancer is there, but cannot cut wide enough to remove it. Or the extent of the invasion may be microscopic.

Cancer type
Less common, but more serious, cancer-cell architectures Like the higher Gleason scores, the presence of these types of cancer cells within the prostate makes prognosis less rosy.

For most of the above, the details and extent of any finding will be noted in a path report. Note that with the exception of positive margins caused by surgeon error, each of these adverse findings are either present or absent before treatment begins. A post-RP report simply identifies them.

Radiologists often specialize in one ore more types of RT. If a treatment plan with external beam RT entails many sessions (called "fractions"), you can ask about hypofractionation. This means reducing the number of fractions and increasing the dose per fraction, so that the total dose remains the same. It's a question of convenience, but keep in mind that the ideal balance between number of sessions and dose per session is still being worked out for some RT modalities -- one wants to avoid short- and long-term toxicities, of course. Another question, especially for external RT is the field of radiation, narrow or wider. Unless there is evidence of local spread to nodes, primary RT is usually narrow, but this can be another topic in your consults. Many Forum brothers with first-hand experience can answer your questions about specific types of RT.

Keep us posted, please!

Djin

GW, Dr Michael Zelefsky is an excellent choice for Radiation oncology at MSK. Thats if you can get an appointment, as i have heard that during the pandemic he is only seeing patients one day a month. He did my Salvage Radiation, and i saw him the first year after i was done, but since the pandemic began, i havent had an appointment with him, only with his Nurse Practitioner.

Not sure where you are located in NY, but Dr Richard Gewanter is another MSK Radiation Oncologist and i think he is very good, i met with him when i was first diagnosed and was very impressed. He is based at their Long Island Facitiy, although i think he may also see patients in Manhattan.

GardenWeld said...
Pratoman--
Thank you! I've written those names down. I'm near Westchester but I don't mind traveling for care.

I'm so impressed by the support of this board. I hope to pay it back one day.

Gardenwild, you pay back in a very easy way: You keep hanging around, and be here for the next new guy who shows up with his hair on fire and help talk him down off the ledge. If someone shows up who is nearby to you...maybe you make an invitation to meet for coffee and chat.

The answers will come for you...

Remember that Gleason can be subjective. After my surgery my Gleason was upgraded from G6 to G4+3. Bummer. I sought a second opinion on the Gleason and it came back as G3+4. And then Mayo, prior to RT, evaluated and came back at G4+3. Oh well, didn't impact the treatment I was doing next so consider it 4+3.

Coming back to update this since I've now spoken to a surgeon and a RO at MSK.

Going into the conversations, I thought I would want radiation therapy. I read all I could and had good, productive meetings with the doctors. After all this, I changed my mind. I feel surgery is the best option for me. It surprised me that the RO agreed. In fact, he was the one who suggested it. Felt I was a better candidate for surgery than radiation.

The deciding factor really came down to hormone therapy and a history of some health issues in my family.

My bone scan is Friday and after that surgery will be scheduled.

One note: I haven't sent the samples to Johns Hopkins'. Someone up-thread mentioned that MSK would need to read them before my appointments and they were correct. The findings didn't change. (Gleason 4+3 in one core and 3+4 in another.)

Thank you Djin. I think so too. Right now, I just want to get the bone scan behind me.

I felt prepared to have the conventions with each doctor, which I credit to you and others on this forum.

Further to Mumbo's excellent recommendations, you want to exercise the urinary sphincter only (and not together with the anal sphincter). The easiest position in which to feel and isolate it and to begin you kegels is to lie on one side, one leg on the other, both legs knees drawn up a bit towards a sitting position.

Djin