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My dear Dads diagnosis.

JDD1111
Posts: 3
Joined: Aug 2017

I find myself here with great remorse as my Dad (78 years) has been newly diagnosed Adenocarcinoma of prostate - Gleason 9 (4+5) prostate cancer. His Nuclear Medicine Report shows there is extensive large volume intensely PSMA avid disease(SUV max 9.3) localised to almost the entire gland from apex to base with some sparing of the left anterior mid gland and apex.

His recent PSA was 12 ug/L up from 3.7 in Sept 2013. 

There is also extension/invasion of the seminal vehicles and the bladder trigone.Bilateral abnormally PSMA avid pelvic lymph nodes(bilateral obturators and left external/internal/common iliacs) are consistent with nodal metastases from prostate cancer. Abnormally avid right medial inguinal lymph nodes are also suspicious for retrograde involvement.

No PSMA avid lymph nodes are detected in the para-aortic region, rectrocrural space, hila/mediastinum and supraclavicular fossae.

No PSMA avid distant metastatic disease is detected, particularly in the para-aortic region and in bone.

No abnormality is detected in the left nephrectomy bed. Normal liver and adrenal glands.

I'm hoping someone(s) is able to confirm how bad all this is and whether or not he is being suggested the best treatment

i've noticed that there are on this board at the very least a couple of very intelligent/informed/considerate/experienced participants who I'm hoping may shed some light on my Dad's diagnosis.

I understand that with a Gleason score of 9 it is an aggressive cancer. I'm hoping I'm correct that the details above suggest the cancer is to date localised within the pelvic region.

A team of Doctors have  decided to pursue Hormonal therapy - currently on two weeks of Casodex before Lucrin injection at some point after which they will re-test PSA.

At his age is this a recommended/beneficial treatment? I would have thought they'd concurrently treated him with radiotherapy treatment? Is there anything else he could be doing to fight this?

Any informed opinions/suggestions/support would be greatly appreciated.

 

 

GeorgeG
Posts: 127
Joined: May 2017

First, I am sorry that your you and your father are facing a cancer diagnosis but I am sure that your support will help you both.

I think that there are a few things for you to consider. First is your fathers age and general state of health. Does he have any competing mortality risks or is PC his only challenge?

Your father has a fairly advanced case of prostate cancer with an aggressive form and that also factors into the treatment options and outlook. Your doctors can explain to you the likely difference in outlook with and without radiation for your dads situation. In other words, would radiation make a significant difference in the course of the disease. keep in mind that any treatment comes with side effects that have to be considered.

Casodex is given at the start of hormone depravation therapy to avoid testosterone flare from the Lupron which can be significant in advanced cases. After the first month Lupron is used alone to suppress testosterone. Most doctors would probably start ADT for two months before radiation starts so the present course covers all options and gives you time for a second opinion. it will also slow down the progression of the disease which is important. Hormone therapy will be a part of your dads treatment in almost every recommendation so again, your on the right track. if you and your doctors decide that ADT alone is the best therapy at this time they will monitor his PSA because not all PC cells react the same to ADT, some are more impacted then others. also this changes over time. There will also be more scans to monitor for distant metastatic disease. Depending on those results and the course of the disease there may be other drugs added to help slow things down. 

The mewest treatment approaches can add many years so it is quite possible for your dad to live a normal life expectancy and maybe even beyond. There will be many informed posts here on managing advanced disease, particularly in the area of the latest chemical warfare on PC. Stay strong and positive.

all the best.

George

 

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

JDD,

I am sorry for your dad's diagnosis. As you expect his case is locally advanced, the cancer is of an aggressive type, and cure may be elusive. The clinical stage is T4N1M1 (due to the invasion of the bladder); however his case is treatable and he will enjoy many years of live. You dad's age though may restrict the type of intervention or even the medication if any other illness exist or may be accounted for future usage. To such extent probably it may be a good idea of involving a medical oncologist in his team of doctors.

I believe that the data you share above is from a PSMA PET exam using the advanced radiopharmaceutical 68Ga. I wonder if you can provide us the details of the biopsy, done by the pathologist when your dad was initially diagnosed. I also would like to know if your dad has of had any other health problem, or is taking any medication. How fit is he at 78 years old?

The good news from the PET scan is that they did not identify cancer in bone which makes me think that the fast doubling of the PSA is due to the metastases in the lymph nodes. This may be the reason for his doctor starting the hormonal treatment (ADT) the earliest. He is trying to contain the spread so that the bandit will not trot to far places via the lymphatic system.

Regarding treatments, the NCCN guidelines (which also includes Australia doctors) recommends palliative treatments for patients older than 75. Radical therapies with intent at cure (surgery and radiation) are also recommended for localized cases but not as advanced as your dad's situation. T4 guys usually are moved to chemotherapy and/or hormonal treatment (systemic therapy), reserving radiation as a palliative intervention to alleviate pain at latter stages (radiation of tissues should be administered only once).

His doctor may have follow those guidelines by starting ADT, but my lay opinion in your dad's case, is that a combine therapy involving three approaches (radiation + Chemo + ADT) may be a possibility. In any case, the risks and side effects from the three treatments are cumulative which would prejudice the quality of life of the patient. Depending on the extent of the metastases at the bladder, radiating the area (trigone) may or may not be a possibility (you need to consult a radiologist). Chemo would be recommended, and the lymph nodes plus the whole gland could be attacked with radiation. The hormonal treatment will not kill the cancer but make it indolent. Your dad's PSA after two weeks of Casodex is already lower and it will go further down after the Lucrin injection.

ADT alone is also to be considered if your dad's cancer is hormonal dependent and if his status does not permit chemo administration. There is a wide variety of drugs in ADT weaponry providing a series of blockades so that one could expect many years of treatment before becoming refractory to the treatment.

Apart from the above, systemic cases can avail now of treatments based on radiopharmaceuticals. Sort of stealth missiles delivered directly to the cancerous cell. There are clinics in Germany already providing treatment using LU 177 that attached to PSMA isotopes (similar approach to the PET scan) manage to kill cancer where it hides. You may try goggle the subject.

I wonder who those intelligent participants in this forum are, you refer above. In any case, please note that we are not doctors but survivors trying to help the many with lay opinions based on our own experiences or researches done while on treatment. 

I think you are writing from Australia, where Lupron is Lucrin and the units used in your PSA lab becomes in ug/L (microgram/liter = nanogram/milliliter) instead of ng/ml. Am I right mate?

 

Best wishes and luck in your dad’ journey.

 

VGama

 

FinishingGrace
Posts: 83
Joined: Apr 2017

I am sorry about your dads diagnosis. It will be a blessing for you to help him navigate a difficult diagnosis.

My neighbor was diagnosed with PCa in the spring. Advanced case like your dads but in addition to the bladder and seminal vesicals, it had spread to three sites in the bone. His PSA was 606 at diagnosis. 

His oncologist started him on Lupron immediately along with 5 months of the chemo drug Taxotere. There has been no radiation at this point but it is an option for the future. His PSA has dropped to the 40's and the cancer has not spread further, so this course of treatment has worked for him. There is no cure, simply palliative care that can extend his life. There have been significant side effects and it's important for your dad to understand those and make decisions accordingly.

Wish you the very best in this fight!

JDD1111
Posts: 3
Joined: Aug 2017

George C and VascodaGamma thank you so much for your informed and considerate replies.

Regarding my Dad's general health at 78 I would say it is very good. All his life he has run(prev marathons) and now walks and/or visits the gym every day with my mother who keeps him on a healty diet - perhaps not enough alcohol free days. The only issue he has is in recent years is in the plumbing area. His treating urologist has been periodically scrapping his bladder in relation to bladder cancer which led to the removal of a kidney a couple of years ago. After a recent scrapping (sorry not sure of the term) urologist decided to perform a Terp, a biobsy of which confirmed Prost cancer. 4 samples were taken:

Clinical Info: Prev TCC. L nephroureterectomy.

Spcimen 1 adjacent to veru lined largely by unremarkable urothelium a few small solid nests of invasive Adenocarcinoma probable G4  of 4+4=8.There is no urothelial carcinoma in situ or invasive uroathelial carcinoma

Specimen 2 left trigone bladder base two of the biopsies present consist of ode,ours stroma Lined by benign urotheliuom and containing dilated/ecstatic and Congested thi wall vessels and a mixed inflammatory infiltrate within the lami proprietary which includes both lymphocytes and eosinophils in addition to moderate numbers of haemosideran laden macrophages.An additional fragment of fibromusular     stroma is diffusely infiltrated by invasive adenocarcinoma consistent with  prostatic Adenocarcinoma probable Gleas score 4+3=7 although severe heat artifact is present and determination of Gls score is impaired.

Specimen 3 Left bladder base lined bybenign urothelium. The superficial lamina propria is odemious and contains a sparse chronic inflammatory infiltrate. Invasive malignancy is not seen.

Specimen 4 Middle lobe Prostate. Close to 95% of the prostate tissue chips approximately 19 of twenty tissue chips are involved by invasive Adenocarcinoma of the Prostate Glwas score 4+5=9 with tertiary pattern 3.Foci suspicious for lymphovascular invasion are present and perineural invasion is noted. There is no uroathelial Carcinoma 

Diagnostic Summary

1. Adjacent to vertu:Adenocarcinoma of prostate.

2. Left trigone bladder base: Adenocarcinoma of prostate.

3. Left bladder base Benign urotheliuom. No evidence of malignancy.

4. Middle lobe prostate : Adenocarcinoma of prostate, Glason score 4+5=9, tertiary pattern 3 (grade group 5).

Thank you for confirming the ADT is at the least a start in hopefully slowing spread.What would my Dad's PSA ideally come down to. Should doctors be monitoring his Test levels. Should he get a base line bone density test.?

Is there a broad guide line by which the use of radiation would be deemed beneficial after his PSA is hopefully reduced. Or is the existing spread too significant to enable radiation. I only ask because a life long friend of his is being treated for PC by the same urologist with radiation - obviously he may have a different grade of cancer but he is the same age.Are there any good articles/books on the pros and cons of radiation. I want to be sure every possible avenue is being considered and am a little concerned that this urologist who has being treating my Dad's bladder for a few years didn't pick PC up earlier. He doesn't seem to have had his PSA tested since 2013!

Should he be seeing an Oncologist or is the Urologist consulting with an Oncologist on my Dad's behalf. Never mind I see VGama has suggested yes, what harm could it do.

Apologies for all the questions.

VGama yes l'll look into that German treatment. I appreciate you are not a Doctor but yes you were one of the clearly informed/intelligenT board participants I was referring to and was thrilled when I saw your reply. Yes mate you're right my Dad and I are Australian, sorry meant to mention in op. Hope it is ok and doesn't prejudice my participation in this great forum.

Thanks again for your replies.

Best wishes to you all

 JDD

JDD1111
Posts: 3
Joined: Aug 2017

Sorry just seen your post Finishing Grace thanks for the heartening experience great to hear. That certainly seems an extremely high PSA.

Anyone know if the fact my Dad's PSA at twelve is a reasonably good sign, is there any recommended reading on PSA levels and PC to Explain the correlation between the two?

Is the PSA an indication/measure of the spread of PC?

Going forward is PSA level the holy grail?

Please be patient I'lL get there.

Regards

JDD1111

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

JDD,

From the info you share, it seems that your dad has been cared and treated by laparoscopy specialists. The urologist may have a degree in oncology but I would recommend you to get opinions from radiologists and oncologists that may be more appropriate to care for his continuing cancer journey. No more bandaid surgeries.

I am not aware of the full story behind your dad’s health issues but something seems not correct. You may be right in regards to the lack of attention given by the urologist towards the prostate cancer issue, in not testing the PSA since 2013 (when this was 3.7 ng/ml), particularly if bladder cancer was at play. What is difficult to believe is that any PSA was reviewed at the initial times when your dad started the urinary problems that led to the bladder cancer findings. I would think that this urologist focus more on his specialty as a laparoscopy operator then as a medical oncologist preventing and treating cancer.
The analysis of the specimens that found PCa this time also suggests that your dad has not been cared properly. Wasn’t for the findings on the adenocarcinoma in the bladder no one ever suspected that the prostate was in jeopardy.

I wonder if I would trust your comment in regards to the grade of fitness of your father. They are always old to us and always in good shape looking fine but that doesn’t reflect health wise. What do the health markers tell? Is there any heart health issue? What about the liver and bone health? Did the bladder cancer treatment include chemo therapy apart from the nephroureterectomy? Is he under any additional medication other than the ADT issue?

I think you should get a full lipids panel, the testosterone (better before the Lupron shot), a DEXA scan, ECG, etc. These markers will serve to investigate his proper status and will be compared in future testing, providing details on the efficacy of a therapy. He should get consultations with a radiologist to certify the pros and cons regarding an RT attack. A medical oncologist would be regulating the use of the several drugs that may interact with each other or prohibit a certain treatment. The ADT will provide time for your dad to get all the tests in time while consulting on treatments. 

In regards to the LU 177, you can investigate if your dad could participate in the clinical trial using the radiopharmaceutical, now running in Australia (no need to come to Europe). This would be a great opportunity for having the treatment free of charge and done and cared by proper specialists. Your choice of a medical oncologist could be procured among the team doing the trial. I am not sure if the bladder issue would oppose your dad from being qualified but guys that have been on chemotherapy and ADT have been included and are in trial. Your dad should be assured of taking the real stuff. Not being included in the placebo group. Please try to contact participants to access the doctors/clinics in the trial using this link;

http://forums.jimjimjimjim.com/index.php?/topic/1548-lupsma-177-clinical-trial/

You do not need to apologize for the questions. You are as we a sufferer of the disease. I wonder if you are a male because if such your risk for PCa is 4 fold higher than the usual folk. If female you also are at risk to contract breast cancer as this bandit got origins from the same genes. Try getting the due tests yourself.

You can find a good collection of reading material in here;

https://csn.cancer.org/node/311252

 

Though been from Australia, this forum welcomes you. The site is American, most of the participants are Americans but many other nationalities use it and discuss/share their issues because we all speak the same language, the Cancer. I am Portuguese and live at the lower tip of Europe, the country of the navigator Vasco da Gama. A good friend and survivor in this forum live close to you in Sidney and uses a famous PCa medical oncologist based in Singapore. We all share our experiences and learn from each other. Some guys are like me and spend hours researching about the matter to the extremes (I have exchanged the bible with a PCa book at my bedside table). I do not think that I am more intelligent than others here but simple got more years on the trade (17 years).

Best wishes,

VGama 

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi,

PSA can be affected by different factors such as last time he had sex, bicycle riding before blood draw, enlarged prostate, infection in the prostate, ect.  Usually the higher the PSA reading it mean more could be going on with the Pca as far as severity and involvement.  Once you have treated the disease then PSA is used as a indicator to determine if the cancer is coming back, but more imaging tests are needed to cofirm the return of Pca if the PSA again starts rising after treament.

 

Dave 3+4

GeorgeG
Posts: 127
Joined: May 2017

If clinical trials is important to you do your research and pick your doctors wisely because many facilities/doctors tequire the patient to be treatment naive to be included. In other words your choices can lock you in or exclude you from other options.

George

 

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