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Gleason 9 PSA 14 Advice

vendetta
Posts: 18
Joined: Jun 2019

In October 2018, my father's PSA score was 9. After coming back to Ohio from spending the winter in Florida, he went to the same Urologist, and his PSA score was 14 in May 2019. His Urologist called for a 12-core biopsy, of which we received the results last week, with cancer being identified in all 12 cores. His Gleason Score is 9. My father is 79 years old, lives in Bowling Green, Ohio, and sees a Urologist from https://www.romiusinstitute.com/. He has the utmost respect for his Urologist.

The additional history I can provide is that he had a PCA3 test 4-5 years ago, and the results came back negative. He is on medication for hypertension, high cholesterol, and tachycardia. He is extremely active both mentally and physically.

At the appointment in which he received his diagnosis, his Urologist put him on Bicalutamide, and created orders for an abdominal CT scan, with and without contrast, and a bone scan, which will take place on June 6, 2019. If the bone and CT scans come back negative, the Urologist is recommending 8 weeks of EBRT and 24 months of ADT, along with an injection, but I’m unsure of what that injection will be. If the results come back positive, the paper my father showed me has the Urologist recommending ADT only.

I have so many questions. Please answer any you may be able to provide input on.

  1. Should I be getting my father a remote second opinion?
    1. If so, what should I be getting a second opinion on? Just the biopsy, or should I wait and have the second opinion done on the scans as well?
  2. As things stand right now, my father’s treatments will be taking place at Wood County Hospital in Bowling Green, Ohio. Would the radiation therapy be of a higher quality if provided by a more specialized facility? My father is willing to travel within the region to receive the best treatment possible. This would include Toledo, Columbus, Cincinnati, and Cleveland in Ohio, and Ann Arbor in Michigan, among others.
    1. Does anyone have any specific recommendations in any of these cities?
  3. Is there anything my father can do immediately, if things have not progressed too far, such as diet and lifestyle changes, or adding supplements? He is already active, exercising 3 times per week with his Silver Sneakers group.
  4. I assume his cancer will be staged at 3 or 4 when we find out the results of his imaging on June 13, 2019. I suspect that his cancer has spread at least regionally, and praying that it has not metastasized. With that being said, what do you think are the best multi-modality treatments if it is spread regionally vs. if it has metastasized?
    1. Should he consider getting a radical prostatectomy?
    2. Quality of life is important to my father. He would prefer to do nothing and let the cancer take him if the quality of life is low with treatment. If metastasized, what would the quality of life be, given the treatment plan? What about the quality of life with the treatment involved with a regionally spread cancer?
  5. At this point, why are they only ordering an abdominal CT scan, and not a full-body scan to include the brain, lungs, etc.
    1. Will the abdominal scan include the lungs?
  6. I don’t know the specifics on the type of cancer cells found in the biopsy, should I ask for that information? Will that make a difference in the treatment plan?
  7. My father has Medicare and an excellent supplement plan (F plan). Will these treatments be covered by the insurance?
    1. Are there any treatments that you are aware of that are not covered by Medicare and the supplement?
  8. Lastly, and most importantly, my sister and I will be present at the June 13th appointment where he will receive the results of the scans. What questions should I be asking the Urologist at the appointment?  

In closing, I’d like to thank all of you that have posted your information here to help educate people like me. Also, thank you in advance for any information you can provide that may allow me to help my father. I’ll be posting updates regarding test results and treatment plans, so others may benefit from hearing the details of my father’s journey.

Georges Calvez
Posts: 304
Joined: Sep 2018

Hi there,

This is difficult as the cancer could vary between being quite local to extensive.
Gleason grade 9 and 10 do metastase quite fast in most cases but it is hard to generalise.
I think you have to wait for the results of the scans to come back, bone metastases are the most likely.

Best wishes,

Georges

vendetta
Posts: 18
Joined: Jun 2019

Thank you for the input, Georges. I'll definitely be following up here once I know more. 

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Vendetta,

I am sorry for the positive diagnosis. The case seem to be advanced for the many positive cores, all with an aggressive Gleason score 9. His doctor's recommendation is typical in such findings. The image exams will verify the extent of the spread. Radiation plus ADT is usually recommend if the spread is localized. When the affected areas include bone at several places, then the case is considered systemic and doctors recommend treatments with hormonal blockades (Casodex plus Lupron shots) or chemotherapy, or a combination of both.

Some young patients in similar situation follow this treatment protocol adding to the mix surgery to debulk the whole infested gland, even if such action wouldn’t guaranty cure.  For guys over 75 such a protocol may not be proper.

Above all, your dad’s quality of life will deteriorate independently of what is chosen. In fact advanced cases are usually treated with palliative intent because cure is illusive. Doctors reserve radiation for later attack to treat pain in bone when that becomes nasty.

Regarding your questions;

1)Second opinions are always a must do thing. I would get firstly those image studies and reports together with the opinion from his present doctor, and then consult a specialist from a separate circle.

2)Having confidence on the staff treating us is a good step forward for success but it must be chosen by your dad. He needs to trust his doctor initially otherwise he will suffer later if things got an unfavorable outcome.

3)Exercising is good. In any case I would recommend him to get additional tests that may influence the cancer treatment. For instance, get a full lipids panel to check for hidden health conditions like kidney function (CKD wouldn’t allow contrasts in scans), hormonal manipulations with specific drugs may not be advisable in unhealthy liver, advanced osteoporosis would require added medication to those that will be subjected to hypogonadism (ADT patients), etc.

4)His doctor will provide a clinical stage after gathering more information.

5)The best image exam to detect prostate cancer is a PET using radioisotopes like 18F choline or 68Ga PSMA. This is a whole body scan. You can read details googling the above terms.

6)The pathologist report should indicate what was examined and what was found. Get a copy for second opinions.

7)Typical treatments are usually accepted by all insurances. The PET scan have some restrictions but his doctor can guide you on the matter. Just tell him that you want a PET for peace of mind.

8)In this forum you can find a link on questions to the doctor to help you in preparing your own list. Use the search engine.

Best wishes and luck.

VGama

 

 

vendetta
Posts: 18
Joined: Jun 2019

VGama,

 

Thank you so much for the detailed response. I've got a lot of work to do, and your response will help me get things prepared. 

 

After we get the full extent of the situation on June 13th, and let's say they want to start EBRT the next week, should we wait forthe second opinion first? I don't want him to waste time, but I do want to make sure we are doing what is best. 

 

Thanks again for your contributions. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Vendetta,

As Vasco noted, what the doctor is planning is mainstream, Best Proactices for his age and test results thus far.  Ask his current doctor if waiting for EBRT (very likely IMRT) an additional two weeks would matter untill after the second doctor's review.  Very likely, he will say the wait will not matter.  Few cancer types change appreciably in two weeks, and PCa, almost never.

I can't imagine any doctor recommending R.P for him.  Very generally, surgeons are wary about this surgery in men over 70, except in special circumstances.  Because of the high likelihood that the cancer has escaped the gland, R.P. would worsen his quality of life beyond reasonal medical benefits from it.  You might want to read up a little on how PCa is STAGED, since it is DIFFERNT from the protocols with many other cancer.  Actually, almost all cancers have significant variations in staging.  It is possible to have an advanced PCa Stage 3 with tumors just outside the gland and for such a situation to be regarded as non-metastatic.  This is sliightly complicated, and reading about it now might be timely.

I am unfamiliar with his hospital.  It might be superb.  The Cleveland Clinic is one of the best cancer treatment centers in the world, while you are looking for second opinions.  In cases of metastasis, the patient's lead doctor ordinarily becomes a medical oncologist.  Some urologists are Board Certified as medical oncologists, but not all.  And choose a medical oncologist with a strong PCa sub-specialization or specialization.

Like all members here, we give layman's insights into issues which only doctors can exprertly decide.  

The link below is what the Cleveland Clinic's internal search feature returned for 'Prostate Cancer.'  I have no affiliation of any kind with Cleveland Clinic.

https://my.clevelandclinic.org/staff?q=Prostate%20cancer&dFR[employedDescription][0]=Cleveland%20Clinic%20employed%20staff&

max

vendetta
Posts: 18
Joined: Jun 2019

This is really good information Max, and I thank you for it. I'm comforted a bit if I can even say that right now, that his urologist is following mainstream treatments with what we know so far.

I'll be doing more research into docs at the link you provided me. Thank you so much. 

vendetta
Posts: 18
Joined: Jun 2019

Also, should I get a second opinion from another urologist in person? I'm 46, live in Dayton, and respect mine. Or should I travel to an "all-star"? For all I know his urologist and mine are all-stars but I have no litmus on which to make that decision. 

Or should I do a remote second opinion from an institution like Dana Farber or John Hopkins?

 

Or do both?

Clevelandguy
Posts: 469
Joined: Jun 2015

Hi Vendetta,

I would highly, I mean highly recommend either the Cleveland clinic or University Hospital Sedman cancer center.  I had my surgery at University Hospitals  Sedman cancer center and I thought the facilities and doctors were top notch.  My Urologist was doctor Ponsky, a great guy and a top notch surgeon.  Was out the next day, very little pain, no infections.   The Cleveland Clinic also has excellent facilities and doctors.  I feel it’s well worth the drive for the two best hospitals in Northeast Ohio.

 

Dave 3+4

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Vendetta,

Regarding the timing of the second opinion vz the starting of the treatment, I would recommend you to get the opinion before starting anything, in any case, radiation treatment (IMRT )usually starts two month after the initiation of the ADT. Your dad will be given at least two weeks of bicalutamide (Casodex) followed with a Lupron shot (of1, 3 or 4-month dose) and at the two month period they start radiotherapy. In this sort of combination treatment ADT facilitates the benefits from radiation so that its action (hypogonadism makes the cancer indolent) is at full swing when the radiation is delivered.

In such regards, your dad could have started already with ADT while getting the opinion from other doctor without losing any thing in the timings.

In fact, the second opinion would be to confirm the diagnosis and on the proposed treatment protocol. That should be done after gathering more health evidences from those tests described in my above post.

I strongly believe that due to your dad's age,at least ADT will be part of the therapy. The only interference of hormonal drugs in those tests would be the PSA (it would lower its level dramatically making this marker insignificant in any judgement) and the PET exam that should be done with no influence of ADT.

The choice of the caring team should be done by your father. You can advise him on facilities and recommended doctors but should insist for him to decide.

Best wishes

VG

vendetta
Posts: 18
Joined: Jun 2019

Once again, thank you. This has been very helpful and insightful. Regarding, "and the PET exam that should be done with no influence of ADT".

Unfortunately he has already started the Bicalutamide. How will this affect the PET that I will request that he get? 

 

Georges Calvez
Posts: 304
Joined: Sep 2018

Hi there,

Really I would just go for it, a few weeks of bicalutamide is not going to make that much difference to the results of the PET scan if he has substantial metastases.
He sounds like he is in good health so maybe if the tumour is mainly contained within the prostate it might be worth going for a prostatectomy to debulk the tumour.
There is something of a guessing game to this, one has to try and pick the strategy that gives him the longest length of good life with the least amount of really painful and hazardous medical treatment.
A prostatectomy could be the go to option if he was younger and the cancer was contained but it is no picnic even for a younger man.

Best wishes,

Georges

vendetta
Posts: 18
Joined: Jun 2019

Thank you, Georges, I'm going to press for the PET scan.

vendetta
Posts: 18
Joined: Jun 2019

Here is an update since I last posted.

The CT and Bone scans both came back as negative regarding the PCa having metastasized. With that being said, the urologist said he would not be surprised if it has microscopically spread based on Gleason 9 and 12/12 of the cores coming back as positive for Adenocarcinoma PCa.

His recommended course of treatment is 8 weeks of IMRT (after 8 weeks of ADT) and 2 years of ADT and 3 month intervals for monitoring PSA levels. ADT would be Bicalutamide and Eligard.

I asked for a PET scan and he said there was no clinical reason to do so.

On Monday we will be travelling to Rogel Cancer Center for a second opinion. We meet separately with a Radiologist Oncologist and a Surgical Oncologist, but both are part of a “multi-disciplinary team” for PCa.

Attached is his anonymized pathology report.

PSA HISTORY

14.100 ng/mL = Date: Apr, 2019

9.120 ng/mL = Date: Oct, 2018

5.470 ng/mL = Date: Aug, 2016

4.790 ng/mL = Date: Apr, 2016

3.520 ng/mL = Date: Sep, 2015

1.800 ng/mL = Date: Oct, 2014

1.520 ng/mL = Date: Jan, 2013

1.4 ng/mL = Date: Jan, 2012

vendetta
Posts: 18
Joined: Jun 2019

First Page

vendetta
Posts: 18
Joined: Jun 2019

Second Page

Clevelandguy
Posts: 469
Joined: Jun 2015

Hi Vendetta,

Sounds like your on the right path, a second opinion does not hurt.  Good luck.........

Dave 3+4

 

vendetta
Posts: 18
Joined: Jun 2019

Thank you, Clevelandguy!

vendetta
Posts: 18
Joined: Jun 2019

Dad received a 3 month Lupron shot on Monday of this week at University of Michigan Rogel Cancer Center, he has been on Casodex since 5/30. On 8/12 I take him back to UofM for his CT "simulation". His radiotherapy will start 7 - 10 days after his "simulation" and he will get 4 weeks of high dose IMRT RT.

 

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Vendetta,

I am glad for knowing that treatment has started. The protocol is typical in fighting PCa in similar status. The present quality of life of your dad will deteriorate somehow and he/you should be prepared to understand what is coming. He will experience fatigue, hot flashes, mood changes, etc and should try avoiding anemia. Patients at his age need vigilance with full lipids blood tests for the hypogonadism condition. The radiation effects start being noticed at the three week timing. I recommend him to drink "loads" of water to fill the bladder for the radiation section (start drinking two hours before).

I wonder if you were given details of the radiation process. How many grays will be applied in tottal and what is going to be covered? Are the local lymph nodes included?

I am sorry that his doctor disregarded the PET exam. This could detect PCa at far places which condition would turn the radiation of the gland as inappropriate for his status. The truth is that some doctors do not use yet the results of PET exams in their judgemnts of PCa cases. PET is a recent modality incorporated in the Guidelines of medical associations and is not recommended as a "item obligatory" of the initial diagnosis process. They still use the traditional CT and Bone scan which is known to be absolute in the detection of prostate cancer. You know it by experience in your dad's case where those tests were negative even in a patient with the whole gland affected.

In any case, without a PET exam your dad will do well with the traditional protocol chosen. There are thousands of cases with similar conditions that have followed such option and they did well. Let's hope that things turn good and in your Dad's favor.

You are wonderful for caring this difficult moment in your dad's life.

Best wishes and luck in the treatment.

VGama

vendetta
Posts: 18
Joined: Jun 2019

Thanks VGama for the information, I will pass all of this along to my father. He is quite worried about the side effects that you mentioned but will endure them he said to fight PCa. We were not told of anemia being a possible side effect, what do "most" people do to combat this? Supplementation? Diet?

We were not given specifics regarding the Gys, but Dr. Spratt did mention that it is a higher dose than conventional, and therefore can be completed in half the time as conventional. I can ask about the Gys at our next consult/prep meeting. I do not know if the lymph nodes will be included, I will inquire about that as well.

I am also going to inquire about SpaceOAR hydrogel to see if they think it would be appropriate for my father's treatment plan. I do know that UofM is one of the clinics that offer this pre-treatment to minimize rectal side effects.

I will say that UofM Rogel Cancer Center has been a breath of fresh air. They seem to be very transparent, love questions, have empathy, and come across as extremely knowledgeable. If anyone in this forum is considering them, I would say at least to give them a shot for a second opinion as my father did.

I will do anything for my parents, they raised and tolerated me and made sure I could survive in this world. It is the least I could do for them. These past several weeks have really made me think about life and what I have accomplished. If I had to do it all over again, I would be an anti-cancer researcher. I'm too old for that now, but meeting these all-star doctors that are my age (I'm in my mid 40s) or about  5-10 years younger make me really proud of them.

Thanks again to you and everyone here for this wonderful source of information.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

V,

Like Vasco, I would say that your father's plan is very, very good.  You obviously chose a winner in Rogel CC.

From the description of the IMRT you provide, they are using the SMART radiation delivery protocol on him (simultaneous modulated accelerated RT).  This allows higher dosing from a fractionated RT machine; it is sort of a half-way system, between conventional fractionated RT and SBRT -- usually dubbed Cyberknife or Varian True Beam by the manufacturers.  But SBRT (Cyberknife) is not ordinarily employed into a field of unknown parameters, although I have read that this is being researched.

Radiation dose, in Gray (Gr) from SMART is usually between 70-76 Gr.  The doctor can tell you exactly. Mainstream IMRT is usually 76 Gr, or close to it.  Mainstream IMRT is usually delivered over around 40 weekdays, with weekends and major holidays off, whereas SBRT can be done in as little as a week. So, you see how SMART in-effect 'splits the difference' in average delivery time.

There is ANOTHER acronym for IMRT SMART, which is syncronized moving aperture RT, which basically sounds like an early term for IGRT, but I am not certain.  Modern RT is routinely gated for breathing and even bowel gasses today.  Advances in RT delivery are improving at a rapid pace.

Anemia in cancers is usually caused by problems in the bone marrow, which I learned during lymphoma, but there are several types of anemia.  It is usually managable via infusion iron IV or other drugs.  They will monitor him closely for anemia and liver enzyme swings.   Liver results can swing wildly during almost all forms of cancer treatment, especially chemo.  Doctors know to watch this, but usually they are willing to let values drift very high to allow strong drug effectiveness agains the cancer.  During chemo my AST AGT levels went to 2.5 times normal, but the doctors said to ignore it, and that they would drift back down later, and they were correct. 

Vasco is an absolute wizard at hormonal therapy, which I know nothing regarding.  Several other guys are very knowledgable in it as well.  The doctors are juggling numerous balls in your father's case, which is why their yachts are large enough for private helicopters, I suppose,

 

max

vendetta
Posts: 18
Joined: Jun 2019

Excellent info, Max, thank you. Does this mean they will be checking his blood during RT? Is that done weekly? Daily? I assume we don't need to ask for this, that it should just be done?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

V,

I know that when on chemo, CBC and metabolic profile is drawn a few days before each infusion, to determnine if the patient is capable of getting the next infusion. In most chemos, a cycle requires an infusion between (on average) once every ten days to once every three weeks.  I am unsure of the protocol for radiation, but I would guess that he will have blood draws at least weekly, since he will be going five times a week.   Very likely, his blood draws will happen automatically, since the oncologists must excersie due caution for side effects or toxicity.  Almost all oncologists are also Board Certified internal medicine doctors.  But I would ask the doctors directly anyway.

max

vendetta
Posts: 18
Joined: Jun 2019

Got it and as always, thank you!

eonore
Posts: 52
Joined: Jun 2017

Hi,

I recently finished eight weeks of radiation of salvage radiation on May 21, along with six months of hormone therapy starting last Dec. 27.  My MO ordered full panels a month into hormone therapy, and again with about a week left of radiation.   My only unusual result was slightly lower than normal white blood cells, red blood cells, hematocrit, platelets and hemoglobin.  None of these was low enough to be of concern, and the MO felt that this was caused by the radiation and would return to normal.  My side effects were very manageable to both therapies, and this was true of most of the other guys I spoke with in the waiting room.

One other test that should be scheduled sooner than later is a bone density scan.  Depending on the results, the MO may want to treat your Dad to prevent further bone loss.

Good luck,

Eric

vendetta
Posts: 18
Joined: Jun 2019

Thank you for the info, Eric, and the best of luck to you as well.

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Yes, I agree with Eric suggestion. Your dad should check bone health because of the effects of the hormonal treatment that he may follow during 24 months. Many of us PCa patients have osteopenia/osteoporosis without knowing, and DEXA scans are never requested by doctors unless one suddenly breaks a bone for no reason.
Aged people in particular are subjective to bone loss. Oncologists typically add to the ADT protocol bisphosphanates like Fosamax or Prolia when the patient shows advanced case of osteoporosis.

Regarding the anemia issue, for the moment you can look into diets that may help preventing a future occurrence. Surely some diets may have preferences than others in those getting radiotherapy. The colon lining is going to be affected leading to moments of diarrhea. You may get ideas on diets from his doctor. He may have to substitute his glass of beer by a glass of water.

Best,

VG

vendetta
Posts: 18
Joined: Jun 2019

Thank you, sir!

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