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Need some advice

ramaka
Posts: 55
Joined: Mar 2017

Hi:

I am Avi from New England area and my parents are back in India. My dad is a healthy 71 year old (walks and exercises everyday-takes medication for BP and nothing else), and he had some pain over the weekend and went to see the Dr. After some tests, he came back home knowing that he has prostate cancer with Gleason Score 9 (4+5). This is a shocker since he is the healthiest among us all! I have read up on what the scores are. His CT Scan results came in today and unfortunately, his Dr/Urologist is on vacation until end of the week. The wait is killing me (being so far away from them during these times!), so was wondering if you could go over the results below and kindly let me know from your experience what it means and should I be alarmed? (I don't have his PSA results)

Ga68-PSMA accumulation is seen in the following regions (SUV per BW).

1. Lesion in the median lobe and rest of the prostate parenchyma SUV: 116.0

2. Bilateral external iliac and obturator lymph nodes SUV: 120.4

PETCT:

1. Prostatomegaly with prominent median lobe causing bladder base indentation.

2. PSMA avid enhancing lesion involving the median lobe and rest of the prostate parenchyma, predominantly involving bilateral peripheral zones with pericapsular extanrion and infiltration of the seminal vesicales (I>R)-suggestive of carcinoma prostate.

3. Bulky PSMA avid bilateral external iliac and obtrurator lymph nodes-metastatic.

4. No obvious metabolically active PSMA avid skeletal metastases.

Thank you,

Avi.

Old Salt
Posts: 720
Joined: Aug 2014

I am by no means a radiologist, but it appears that your Dad had a PSMA scan. This type of scan is 'state of the art' and not readily available in the USA.

As you may have surmised from the gleason=9 score, your Dad has agressive prostate cancer. This kind often escapes the prostate and metastasizes to other parts of the body. In fact, it looks to me that the scan provides evidence for cancer in at least some of the lymph nodes. Moreover, the scan shows uptake of the tracer in the seminal vesicles and the capsule which surrounds the prostate.

Unfortunately, it looks to me (inexperienced in reading radiology reports) like bad news, but the good news is that there was no radiological evidence for metastasis to the bones.

Other knowledgeable participants on this Forum may tell you that I am all wrong. In fact, I hope for you and your Dad that I am wrong...

ramaka
Posts: 55
Joined: Mar 2017

Thank you, Old Salt. I will update once they meet their Dr.

Steelchuggin26
Posts: 36
Joined: Mar 2013

Unfortunately that is an aggressive cancer being gleason 9, and it appears that much of the gland is involved, extraprostatic extension is present, and seminal vesicles are involved as well. Also appears to have lymph nodes metastasis. So this definitely rules out active surveillance and a treatment plan will need to be developed. 

 

With such extensive local disease, and nodal Mets, surgery isn't an option. Follow with a medical oncologist and radiation oncologist, those are the ones best to serve a serious case like this. 

But do know that even with advanced disease, treatment can still establish control of the cancer with great success, and can still allow for several more years to live. It will require aggressive treatment though. Likely hormone therapy and radiation therapy. Again, this is where the MO and RO come into play. The urologist is essentially done with his part, ad there is nothing he can do, unless he is also certified in oncology. 

 

Hormone therapy helps control the cancer, and sensitizes it to radiation, therefore making radiation therapy much more effective, and a better likelihood of control and progression free survival. Make sure they are prompt about it, as advanced disease with a high gleason score is nothing to play around with.

 

In regards to the bladder indentation, sounds like the prostate is quite enlarged too,  and may be causing urinary symptoms. That needs to be discussed and factored into treatment as well.

Steelchuggin26
Posts: 36
Joined: Mar 2013

Fortunately however, there was no evidence of bone or distal metastasis, that bodes well in the chances of successful treatment. So he has an opportunity now to beat back the beast.

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

Hi Avi,

Welcome to the board. I am sorry for the PCa diagnosis. Above survivors gave you the details and from the data you provide I would guess your dad's clinical stage at T3b N1 M0.
The tumour T could well be T4 if the urethral sphincter (tiny muscle that controls urination) is also found to be positive to cancer.

The info you provide above is from a 68Ga PSMA PET/CT exam, which at present is the most reliable image study available. Errors are minimal. Your dad's case is advanced (localized) and should be attended the soonest. In any case, there is plenty of time to make a decision on a therapy (things wouldn't change within one, two months). While waiting for the doctor's arrival, I would recommend you to investigate on treatments options, their risks and side effects and prepare a list of questions so that you and your dad can discuss on what to do next.

In my opinion, radiation is be the best option to treat a T3 N1 case, because it can handle both, the gland and surrounding spread in one goal, but some doctors prefer to dissect the whole gland, including the seminal vesicles and closed lymph nodes (known to be infested) with surgery, and follow with adjuvant radiotherapy (IMRT) to cover surrounding areas (prostate bed and external iliac lymph nodes). T4 urethral sphincter cases that involve the delicate muscles controlling urination, is an area difficult to treat as it could cause permanent incontinence. Radiation of the sphincter may not be recommendable. You should get the opinion of a radiologist firstly, in case your dad decides to go that route.  
Radiation can be applied by a variety of choices and combinations, and can include hormonal treatment which is highly recommended in localized cases.

The PET/CT findings indicate a voluminous cancer with seminal involvement, extracapsular extensions (not contained) and, internal and external iliac lymph nodes involvement. Far metastases are not seen but the bone at the iliac area could be affected. You can get a bone scan for precise details but such bones would be covered by the radiation treating the iliac lymph nodes bundle. The median lobe of the prostate gland where the cancer is most accessed (high SUV 116) seem to be protruding into the bladder (upwards). This is the area that could affect the muscles of the sphincter.

I would appreciate if you provide us with more details about the tests, exams and symptoms of your dad. Can you please describe the biopsy details. How many cores were positive to cancer? What was his PSA histology? Did he have a digital rectum examination (DRE)?

What about symptoms, was the pain due to urination? Did he experienced retention or frequency? What made him to get a biopsy?

When you refer that your dad is  "....healthiest among us all", you mean that he just looks healthy or he got all healthy markers (blood tests) within the normal levels?

Here are some materials for you to read that may help you understanding about treatment options and help you in preparing your list of questions;

http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

https://www.training.seer.cancer.gov/prostate/anatomy/lobes.html

 

I also would recommend your dad to get this opportunity to check his other healthy aspects. Treatments for prostate cancer may interact with medications or prohibit certain conditions. Bone density (osteoperosis), heart health (BP problem), testosterone (levels), vitamin D and lipids can be ascertain while deciding on a therapy.

Best wishes and luck in his journey.

VGama

ramaka
Posts: 55
Joined: Mar 2017

Thanks Steelchuggin26 for your input.

Thanks to you too VascodaGama! My dad had issues while urinating (little pain) and 2 weekends back he said the pain intensified and he had symptoms of frequent urination and during nights incontinence. He went in the very next day to get it checked and they did an ultrasound and found that it was enlarged protate that was obstructing his urinary tract and letting the urine to pass completely. Dr. saw this report and he asked for a Biopsy and the tissues were taken via his rectum. The biopsy results came in as below:

"Biopsy:

Source: Trucut biopsy of protate for HPE

Gross: Multiple linear grey white soft tissue core ranging from 0.5cm to 1.2 cm. All in one block.

Microscopy: Sections show 5 cores of fibromuscular tissue with an infiltrating tumor composed predominantly of poorly formed gland forming nests, with smaller foci of cords. The tumor cells show moderate pale eosinophilic to clear cytoplasm, pleomorphic mitotically active nuclei with coarse chromatin and prominent nucleoli. Many foci of perineural invasion are seen. There is evidence of lymphovacular emoboli in the sections studied. Gleason's Score: 4+5=9, Grade group V. The tumor occupies 60% of the cores.

Microscopic Diagnosis:

Adenocarcinoma, Protate.

Gleason's Score: 4+5=9, Grade group V

The tumour occupies 60% of the cores.

Perineirial invasion noted."

For some reason they do not know what the PSA levels are inspite of having a blood test done and me inisitingthem to get it. I will contact the Dr directy and ask him, once he is back from vacation.

He is healthy in that his BMI is normal and he exercises (and walks) every single day (rain or shine). He takes one medicine for BP and that is about it. I truly appreciate your detailed reply and thank you!! Based on what the treatment course will be, I am planning to go to India and stay with them for some time-for their and my peace of mind! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

ramaka,

Like everyone, I am sorry to learn of your father's diagnosis.  You mentioned "the Northeast US," which usually indicates a university student.  While I live in SC, I have numerous ties to relatives in Boston (Boston College) and NYC, as well as Poukeepsie, NY (IBM).

Even without you currently having his PSA results in hand, the biopsy and scans show that he has aggressive PCa that has exited the gland, at least in to the immediatley adjacent structures.  As Vasco summarized, this yeilds at least a T3 staging, and Stage 4 is possible.  Get his PSA results when you can, but they will not fundamentally alter what is already known from the biopsy.  (Without any doubt, he has had several PSA draws done, they are just not often posted on Biopsy Reports.)

At least in theory, radiation therapy ("RT") could potentially be curative for him -- it could kill all of the disease.  Nothing else can or will.  Surgery is curative in cases in which there is no extracapsular escape, but he is almost definitely not a candidate for surgery.

He will likely be put on Hormonal therapy ("HT") also, and even some chemotherapy is conceivable, but chemotherapy is usually not begun at this point with most of the guys who report about their treatments histories in the early stages following diagnosis.  Chemo used as a neoadjuvant at the beginning of PCa treatment is administered to "debulk" cancerous mass, not toward a cure.

Prostate cancer ("PCa") in its early stages usually has few symptoms, and what symptoms it does present are usually equivalent to the symptoms of enlarged prostate (conditions referred to as either "BEP" or "BPH"), and written off as such by many doctors for some time.  Hence, lack of a lot of UT problems is no argument against advanced disease.

So too with his fitness and energy:  PCa hits the fit and the fat equally; the vegan and the bacon addict. As WIll wrote, he was extremely fit and athletic. But others write that they were so obese at diagnosis that they could not be operated on.   But his fitness will help him endure and hopefully beat this disease, and the more healthy a patient the better, obviously.

There are things yet to be learned, but it is good that he is obviously in a high-quality facility and is being treated by excellent doctors.  DO NOT PANIC or assume the worst for him.  In the US, even men with widespread, metastatic PCA live an average of 5 years. That statistic is derived from ALL patients, even those getting relatively inferior treatments. With your father's kind of care, that would presumably be a lot longer, IF he has metastasis.  Regardless, HT keeps men healthy and with good quality of life often for 10, 12, 15, or more years.  But as I noted, his case remains potentialy "curable," as oncologist's use the term in treating prostate cancers.

We are all hoping that his disease can still be fully eradicated,

max

Will Doran
Posts: 207
Joined: Sep 2015

Avi,

Sorry to hear of your father's diagnosis.

I am not a doctor but will share with you what I went through after being Diagnosed in August of 2013.   I had had no symptoms of a problem.  I was 67 when diagnosed.  I was a hard riding road cyclist and weight lifter.  I was on my bike, on the road or sometimes on my Mountain Bike in the woods,  at least three hours per day.  I was found to have a PSA of 69, and a Gleason of 3+4=7.   I was ready to have my Prostate removed, ASAP.  However, my doctors insisted that I talk to Radiation Oncology before I made my final decision.  After that, I still decided to have a Robotic Assisted Surgery.  That surgery was done in December of 2013.  The surgery took 5 1/2 hours because of complications from Abdominal Hernia repairs using mesh, and other complications from a birth defect.   My Post Surgery Pathology came back that I was a Stage pT3bN1. I had 40% ivolvement with the tumor.   Because of that pathology report, I was put on Lupron (Hormone Therapy for two years), and then after a couple months I was treated with 8 weeks of Radiation to the Prostate Cavity Area as clean up.  I had one lymph node involved in my right groin area.  That lymp node spot was so small that it hadn't shown up in my MRI's and other scans.  That had been removed during the surgery. That lymph node spot was found during the post surgery pathology.   I was told that I would probably develop a Hernia in my right groin area becasue of the surgery.  Because of the muscle development in my legs, they had trouble finding the lymp nodes in my right groin area. They did a mirror image and went right to the lymph nodes in my left groin.  That side was fine.  I also developed a cyst in my right groin area where the lymph nodes were removed.  We were going to fix the Hernia and remove the cyst two year ago, But the surgeons said I had been through too much surgery and since the Hernia wasn't in danger of "getting stuck" we would wait.  The longer this went along, I started having more and more trouble with bladder control.  On Jan. 28, 2017 I started having terrible pain.  Went to the ER at 3AM on the 28th of January.  I had just been in for my check up with my Urologist on the 27th an all was well.  The ER did CT Scans and blood work.  They called a surgeon who came in at 4:30 AM and we were ready to do the surgery.  The surgeon checked me over and we were able to get the Hernia back in place.  So, he decided he'd rather wait a couple days and be able to schedule the surgey so he could have his own staff assist. I saw the surgeon on Feb 1st, and we scheduled surgery for Feb 3rd.  All went well.  The surgeon said he would look for the Cyst, and if was right in the area, he would remove it as well. He siad he would not "go looking  for the cyst".   The cyst showed up on the CT Scans.  Turned out the Benign Cyst was in the way of doing the surgery to repair the Hernia.  So, the Cyst (called a Lipoma) was removed.  It was the size of a tangerine. The cyst was caused by injury during the Robotic Surgery from December 0f 2013. My Hernia was very large.  I have a 6 inch incision going from the middle of my lower belly to the right in my groin at the hip joint.  I'm now 5 weeks post hernia surgery and all is well.  My Bladder control problems are all gone.  The Hernia and that Cyst were putting pressure on nerves, which was causing my leakage problems.  Before we did the Hernia repair, I contacted my Urologist and he gave his "blessings" to have this surgey done.  As of last week, I am now back to normal activity doing up to 100 minutes per day on my indoor trainer bike and my weights, Ab Crunches and other weight lifting.  All is going well.

Also I have developed a Bone density problem in my Femurs from the radiation.  I have gained bone density every where else in my body because of prescribed calcium supplements.  So, I now get an infusion of Prolia evey 6 months for Bone Density.  I get that infusion next week at Chemo Oncology.  I have muscle pain that is caused by the Prolia, but I guess it's better than broken hips. 

So, as your Father starts looking at treatment  options, please study very hard and learn all the side effects of all these treatments.  Make sure and ask tons of questions.  My doctors were very good at informing me about what could and probably would happen with the follow up treatmets and the surgery.  Both my Urologist / Surgeon and my Surgeon who did the Hernia repair are very straight foward people.  They don't paint a rosey picture, but tell it like it is.  I like that in doctors.  I am now a 3+ year survivor.  My doctors are still talking 10 years down the road.

So, there is hope and many treatments that will help. There are new and better treatment options coming out all the time.   Study hard and be completely informed of what this all entails.  Ask as many question as you want on this site.  We are not doctors but can share what we've been through to give you ideas of what to expect. 

Know that your Father and your family are in my thoughts and prayers.

Love, Peace and God Bless

Will

ramaka
Posts: 55
Joined: Mar 2017

Wow, Will! You have gone through a lot and still seem to be in good spirits...You are a real life hero and inspiration to others. Wishing you only the best and thank you for your kind words.

ramaka
Posts: 55
Joined: Mar 2017

Sorry, Max, did not reply back to you since your message got embeded betwen Will's and my reply for some odd reason. Thank you for your reply and postive outlook. The Radiologist/Oncologist is still not back from vacation, but I have asked my parents to ask him about the PSA levels, staging details and in depth explanation on the treatment course. I will update back soon.

ramaka
Posts: 55
Joined: Mar 2017

Hi All:

I finally received an email from my dad's Dr. He clarified that the Gleason Score is 4+4, PSA of 44.1 (I think!) and T3N1M0 staging. Today he administered a shot of Degarelix/Firmagon shot to my dad and asked him to wait for a month. Post one month he will do an urine culture and give another shot of Degarelix. Below is his email and it has way too many technical jargon and hence hoping you could help me with your experience and thoughts on the treatment procedure the Dr has charted for my dad. 

"In view of a large gland causing complete urinary obstruction, he would probably benefit from LHRH Antagonist therapy with Degarelix which acts quickly and therefore controls the disease early.

This will also facilitate early removal of his urinary catheter.

I plan to continue 3 such monthly doses of Degarelix and reassess his disease response.

If there is a good response to the treatment, I would probably contemplate Radical Prostatectomy keeping in mind his large prostate gland and Urinary Obstruction.

There is a very high chance that he will require either Adjuvant or Early Salvage Radiation therapy following Radical surgery. This is called Multimodal treatment which is a new and evolving concept in management of high risk localized and locally advanced prostate cancers.

If at the end of 3 months, his disease response is only moderate and surgery will seem challenging, I would consider getting  IGRT on him (Radical Radiation).

If he goes through the path of radiotherapy, he will require to continue the hormone therapy as well for up to 2 years duration.

I would be happy if he gets a chance for cure with both Surgery and Radiation as this approach would maximize his chances of cure whilst not compromising his Quality of Life significantly."

Thanks again for your time and help!

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

Avi,

The info you provide above is not in line with the pathologist report of your fist post. In any case, your dad is confronting an aggressive cancer (Gleason score 9 not 8) and you need to decide which treatment to choose. Doctor's recommendation is similar to what we discussed above; (1) A combination of surgery plus radiation or; (2) only radiation. The survivor Will Doran above gave you details of his experience with the combined therapy. Theoretically both approaches are applicable but the doctor gives preferences to surgery (his expertize) in the intent of debulking the big tumor, reserving radiation for adjuvant administration (3 months after surgery) or to be done by the time of biochemical failure (recurrence). Combined treatments involve more risks and more side effects. This is what your dad should know in detail for him to decide. There are always risks that one whould like to avoid. This doctor's comment in ".... not compromising his Quality of Life significantly ..." is false.

The hormonal treatment (HT) already initiated and planned for both approaches is a good start. Apart from holding the cancer from spreading further, it will diminish some of the enlargement of the gland which would even facilitate the dissection of the whole prostate via robot laparoscopy. Open surgery wouldn't be dependent on the size and it would be better for dissecting the whole bunch of lymph nodes not reached by a robot arm.
His choice for three month in HT is applauded as it wll also improve the outcome of the radiotherapy (done in combination or solo), which treatment is required to cover the extraprostatic extensions surrounding the gland and at close lymph nodes. In patient language is like saying that HT sensitizes the cancerous cells for these to absorb better the radiation and die.

Three months before intervention is enough time to get a second opinion from a radiologist (highly recommended). Your dad can take this opportunity also to get those exams still missing. Blood tests are important to verify if the patient is fit (not only apparently as you commented above). HT drugs will change his condition and cause hypogonadism. It also will affect bone health, cardiovascular issues and diabetes. Radiation may also be prohibitive if your dad has asymptomatic ulcerative colitis in the area to be radiated (colonoscopy should be done in advance). You need to request extra examinations before starting the treatment. His doctor will not bother on that. Please read this;

https://csn.cancer.org/comment/1574292#comment-1574292

Best wishes and luck in his journey ahead.

VGama

ramaka
Posts: 55
Joined: Mar 2017

Hi VGama:

Thank you so very much again for your time and help. Yes, I have asked my brother-in-law to consult a couple more Drs and get their opinion as well. For some reason, the general consensus among Drs in India is if the patient is healthy then just go ahead and remove the prostate! I have a couple of friends here in US who are Drs (not oncologists though) and have sent them the reports to ask their friends for their opinion as well. Yes, what you and others have said makes a lot of sense and thanks to each and every one for their time and help. Wishing only the best to everyone here. I will keep you updated.

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