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Joining the Club with high initial PSA

amdenver
Posts: 18
Joined: Dec 2020

Hello All:

Best Wishes to Everyone for a better 2021 !!

My own new year is beginning with the life changing news that we all have had. All indications at this point are that 2021 will be more challenging for me. Perhaps much more!

All was going well until the first week of December, when I began having mild symptoms of, I thought, UTI, which I've had before. Mild discomfort after passing urine and feeling of fever but temp not elevated. For several days upped the intake of water and cranberry juice, etc. then decided to see the first available doctor. Urine results came back negative for UTI so the DO advised for appt with a Urologist, prescribed Tomsulosin for the interim, had a redo of the Urine analysis and added a blood culture test. UTI was still negative but the latter came back with a PSA of 25.

Had little idea of PSA test and the significance of numbers so began reading. The peaceful and worry-free part of life is now over !

Just turned 68 two months ago. Prior to that the only test I can remember was a finger test by my Primary sometime after I turned 60 and he had decided that all was fine. Subsequent annuals were a ritual of a bunch of questions, including any issues with peeing, etc.? There weren't any, so testing for PSA never occurred. About five years ago A1c had come out high but under the threshold so focus stayed on cholesterol and sugar and I began taking Atorvastatin. Even at the most recent annual, that was in September, -an audio only visit-the substitute physician did the routine, mentioned testing for PSA but then decided to skip on it. Just did a blood sample for A1c.

Had an appt for Colonoscopy in April-20 that was canceled coz of Covid. Appts reopened in July but decided to hold off until after a vaccine. In November had an onset of what appeared to be mild upset stomach which lingered, so changed my mind about Colonoscopy. Next available appt was Feb 12, 21.

This is the history and background. Reassuring my wife and two children but inwards, starting with such a high PSA, I'm fearing the worst.

Trying not to let anxiety ruin my days but is difficult. Tomsulosin seems to have helped with the Urine passing symptoms. Now only have an occasional tingle afterwards but have to go quick when the need. Other lingering symptoms are a low-grade discomfort at the lower left of the abdomen, more noticeable when I lie down. And warmth in hands and feet at night. Appointment with the Urologist is for Jan 12th.

Any thoughts from the wonderful folks who share their expertise/experience and knowledge here would help.

Thanks & Best Regards

 

Clevelandguy
Posts: 685
Joined: Jun 2015

Hi,

First of all you will need futher testing to determine if you have Prostate cancer.  A biopsy will determine if you have cancer and also how aggressive it is.  You will get two numbers x+y where x is the majority of the cells from each sample and y is the lesser amount.  So for me I had 3+4 the largest amount of cancer cells were graded a 3 on a scale of 3-5, the other type of cancer was a 4 which is more agressive than a 3.  I had a MRI first to give my Urologist a location where to take samples from.  Another test is a PET scan which can tell you if the cancer is still within the Prostate.  BPH can also cause elevated PSA reading and if you had sex right before your PSA test that can elevate the reading.  With all this being said your biopsy will tell you if you have cancer so more testing is needed.  If you do have cancer and it's low grade 3+3 many men here have not done anything but more future biopsies to monitor.  For more agressive grades 3+ surgery or radiation are options.  The American Cancer Society has a lot of very good info on Prostate cancer and it's treatments.  Also be aware that surgery and radiation have side effects, you will need to be aware of them so it's a good time to do your homework.  Let us know when you get more info so we can share our experiences.

Dave 3+4

Old Salt
Posts: 802
Joined: Aug 2014

You do need a biopsy ASAP. I am sure your urologist will propose one during your Jan 12 appointment.

If cancer is found, there are multiple options for treatment. Clevelandguy already summarized (most of) them. 

Please do tell us more after your visit with the urololgist.

lighterwood67's picture
lighterwood67
Posts: 292
Joined: Feb 2018

At this time, the definitive test for prostate cancer is a biopsy.  In most cases, this will drive yours, your urologist and/or radiation onocologist approach to treatment.  In the mean time, become as knowledgeable as you can on the subject.  Good luck on your journey.

amdenver
Posts: 18
Joined: Dec 2020

Friends:

Had the biopsy yesterday and just got the call from my Urologist. Results:

FINAL DIAGNOSIS: 1. Prostate, right, needle biopsies: -- Adenocarcinoma of prostate, Gleason grade 3+4=7 (Grade Group 2), 30% Gleason pattern 4, involving five of six needle core biopsies and approximately 80% of the material submitted; perineural invasion identified. 2. Prostate, left, needle biopsies: -- Adenocarcinoma of prostate, Gleason grade 3+3=6 (Grade Group 1), involving one of six needle core biopsies and approximately 1% of the material submitted.

With last PSA at 22 Dr wants me to schedule a CAT scan and bone scan rightway to assess the spread.

Meet with him on 1/19 when he said will give me the full scoop and options.

Thoughts on what we know so far, and what to ask him?

Thanks

Clevelandguy
Posts: 685
Joined: Jun 2015

Hi,

Sounds like your doctor is doing the proper homework, but if it was me I would want to get a PET Scan.  From what I know PET scans can show more detail of possible spread of the cancer.  The next step depending on your scan results would be to determine surgery or radiation.  I had robotic surgery back in 2014 abd don't regret it.  Cyberknife or Proton radiation are two good choices in my humble opinion if you want to go that route.  Be sure and study the two major treatment modes and their side effects because they will affect you after treatment.

Dave 3+4

Old Salt
Posts: 802
Joined: Aug 2014

I am sorry about the outcome of the biopsy, but it was not unexpected considering the high PSA (25). On the positive side though, with such a high PSA, the biopsy could have revealed sites with significantly higher Gleason scores. 

As Clevelandguy already pointed out, the follow-up tests are standard. Hopefully, they will show no spread to the bones. Once you have that info, you will have some time to decide on the path to follow. Typically, forum members do not agree on the best approach; you will have to do your own homework before making a decision.

 

Georges Calvez
Posts: 521
Joined: Sep 2018

Hi there,

The bad news is that it looks like you have a fairly extensive tumour.
The good news is that the cancer seems to be low grade and hence there is a good chance that it is localised.
You are looking at fairly extensive treatment, but there is a fairly good chance that it will be successful.
It worked for me and I started out with a PSA over five times the level of yours and a similar type of tumour.

Best wishes,

Georges

hewhositsoncushions
Posts: 385
Joined: Mar 2017

Hi

I would recommend lots of research and in depth chats with specialists in all potential fields. US and UK cancer medical and charity sights have lots of advice on the illness and treatment options. You have some time as this is generally not a speedy bandit.

When reading cases histories and opinions here, bear in mind everyone is different so take everything with a pinch of salt and don't be swayed by black and white thinking.

You may want to let your specialist work through the various nomograms (risk calculators) to inform your choice. I tried to try the MSKCC one but it asked for staging which is unknown at your stage - perhaps one of the old lags can help.

I recommend you look at health and physical health and lifestyle in preparation for your journey as basically the fitter you are in mind and body the better you will facr the challenges.

Good luck!

amdenver
Posts: 18
Joined: Dec 2020

Appreciate the feedback gentlemen.

@Georges: your eking out a piece of optimism out of my grim situation gave me a tad better sleep last night :)

I suppose all now depends upon what comes out of the bone and the CT scans that I'm scheduled for Jan 22nd. Also have a visit with the Uro on the 19th. Will update.

Saw this article about a recent development in PET scans. Limited testing for now in LA and SFO, but appear to be open to patients from other areas too.

Thoughts?

https://www.nytimes.com/2020/12/16/health/prostate-cancer-scan.html

https://www.uclahealth.org/psma

https://www.uclahealth.org/psma

https://www.youtube.com/watch?v=RMo6GxtGRns&feature=youtu.be

 

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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3646
Joined: May 2012

Some of us here recently were discussing new developments in PET technology for use in mapping PCa (prostate cancer).   Traditionally, neither a PET nor a CT have been of much use in identifying PCa, for a variety of technical reasons.   If your doc suggests that you get one, it cannot hurt, but may not yield any definitive information.   A bone marrow biopsy will be of great use, however.   Based only on results you already have, your case is certainly potentially curable, mostly via radiation.   The PSA of 25, plus perineural invasion learned in the biopsy, generally suggest against surgical removal for most experts.

Old Salt
Posts: 802
Joined: Aug 2014

AFAIK, PSMA testing is appropriate for low PSA cases, but with a PSA of 25 other scans should be able to localize cancerous sites. The test is quite expensive, and I doubt that insurance would cover it for your type of case.

From the info given, I agree with Max that radiation appears to be the best therapeutic approach. Perhaps your docs will recommend a 'triple play' (two kinds of radiation + ADT).

We will be eager to hear the results of your upcoming tests and consultations.

Georges Calvez
Posts: 521
Joined: Sep 2018

Hi there,

This may be of interest to you.
It deals with patients with high PSA levels, associated levels of disease and outcomes.
As you can see you have a fairly good chance of living for a respectable period of time.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6442132/

Best wishes,

Georges

amdenver
Posts: 18
Joined: Dec 2020

Thank You Georges !

PSA, Biopsy, CT Scan, Bone Scan and perhaps the MRI, are the major pieces of the unique puzzle that physicans try to stitch together for each new victim of PCa.

While it may be of some comfort to me, this information muddies the water than any else.

Thankfully, new steps are happening in advancement. IMO, the new PCa marker in the new PSMA/PET scan appears to promise more accurate initial, or at a recurrence, targeting of the cells that need to be eliminated, wherever they may have mestastised to. Hopefully, this will be a major stride towards preventing recurrence and towards increasing long term survival %.

Wonderful of so many folks to be on the lookout for new and helpful information.

Thanks to All & Best

 PS: 1/20/21

Just came across a reference to this book. Worth taking a look:

You Can Beat Prostate Cancer by Robert Marckini

Georges Calvez
Posts: 521
Joined: Sep 2018

Hi there,

You should remember that your prostate cancer is mainly grade 3 with some 4.
This type of cancer does not throw off metastases that turn up all over the body until quite late in its development, if at all.
What it does is slowly grow to invade most or all of the prostate, after that it will grow into the neck of the bladder, seminal vesicles, rectal wall, etc.
60% of men that have metastatic prostate cancer have secondary tumours in the bed of the prostate or in the lymphatic system of the pelvis.
This is why most men with advanced prostate cancer go on for years, occasionally decades.
It is a truism that most men with untreatable prostate cancer will die with the cancer and not from it.
My guess is that your cancer is still localised and you are treatable with either radiation or a prostatectomy plus salvage radiation and ADT.
Not the best options in the world but better than the treatment for some cancers, they are pretty effective and they are better than dying!

Best wishes,

Georges

amdenver
Posts: 18
Joined: Dec 2020

Team:

Both are Negative.

Bone Scan (Whole Body), Findings:

There is intense increased radiotracer uptake overlying the
posterior right lower lumbar facets correlating with degenerative
change on same-day CT. Additional small focus of increased uptake
overlying the left L4-L5 facet joints also correlates with
degenerative change. Increased radiotracer uptake at the T8 and T9
level is most consistent with degenerative change. This area is not
imaged on same-day CT.
There is mild extravasation of tracer in the left antecubital fossa.
Increased radiotracer uptake in the sternoclavicular joints, right
elbow joint, bilateral knee joints and bilateral first MTP joints
all consistent with degenerative change.
There is symmetric renal excretion radiotracer.

CT Scan Findings:

ABDOMEN AND PELVIS

LIVER: Tiny 4 mm area of low-density change within the dome of
liver is statistically most likely benign, but too small to
confidently characterize. Tiny dystrophic calcification within the
right lobe of the liver.
BILE DUCTS: Unremarkable.
GALLBLADDER: Unremarkable.
PANCREAS: Unremarkable.
SPLEEN: Unremarkable.
ADRENAL GLANDS: Unremarkable.
RIGHT KIDNEY: Mild pelviectasis. Otherwise unremarkable..
LEFT KIDNEY: Mild pelviectasis. Simple 1.2 cm renal cysts.

REMAINDER THE RETROPERITONEUM:No CT evidence of adenopathy. Normal
caliber abdominal aorta.

BOWEL, MESENTERY AND PERITONEUM: No CT evidence of adenopathy.
Portions of the bowel are decompressed and suboptimally evaluated.
Normal appendix right lower quadrant (image #92 series 4). No bowel
obstruction, inflammatory changes, pneumoperitoneum, pneumatosis,
significant ascites or other detected abnormality for technique.

URINARY BLADDER:Unremarkable for technique.
PROSTATE: Dystrophic calcifications without focal measurable
abnormality associated with the provided history.
REMAINDER OF THE PELVIC STRUCTURES:No CT evidence of adenopathy or
other potential areas of measurable disease

IMAGED BODY WALL: Unremarkable for technique.

IMAGED OSSEOUS STRUCTURES: Mild to moderate lower lumbar spine
predominantly degenerative changes.

--------------------------------------------------------------------------------------

Had a meeting with the Uro last week. His recommendation, if no spread, is for RP + 2 years of ADT. Says he's done close to 500 RPs and pretty confident that can keep any collateral damage to the minimum possible. But may be biased towards RP. Did recommend me to consult an RO as well. Have that appt for next week.

Meanwhile, have come upon information on non-surgical procedures, which is placing Brachytherapy, an internal radiation procedure with long track record, as a top contender with RP and SBRT. But with fewer after affects and quick procedure and recovery. Has two versions, HDR, in which a high dose is delivered to the prostate via a wire, and LDR, in which radioactive seeds are implanted into the prostate for low dose over some time. Also, found information which says that Brachy Boost (Brachytherapy + shortened EBRT) has the lowest recurrence of PCa among the three options.

https://www.prostatecancer.news/2018/03/brachy-boost-therapy-and-surgery-extend.html

https://pubmed.ncbi.nlm.nih.gov/30908894/

https://pubmed.ncbi.nlm.nih.gov/31704459/

At this point I'm leaning towards Brachy Boost without ADT, if possible. But will know next week if feasible for my situation.

Thoughts?

 

VascodaGama's picture
VascodaGama
Posts: 3353
Joined: Nov 2010

AMdenver,

I think that you are doing well in researching before deciding on a treatment. Apart from cure, you need to include in your decisions the factor regarding the side effects that you will endure after therapy. Two friends of mine have chosen Brachytherapy (seeds) as their initial and main treatment because they were diagnosed with supposedly contained cases. One is doing well but the other experienced recurrence and had gone through SRT, managing remission since 2010. Both recovered well from the side effects.

Brachytherapy is an option for contained cases that, like surgery, can be copped with additional EBRT if the cases are considered advanced. Recurrences from Brachy and Surgery are typically treated with SRT or a combination adding ADT (hormonal treatment). Brachy plus Boost and HDR are also recommended in contained cases. The Boost is done with the intent in widening the targeted field of attack but it is done with lower Gy doses in total. CK alone could be a substitute in contained cases. EBRT alone (IMRT or PB) can do the whole job radiating the whole gland in addition to the surrounding areas of the prostate that includes localized Lymph nodes. It is an option for those with identified metastasis or for those cases where containment is not assured.

In your case the high PSA may indicate that you have localized spread. In your shoes I would add the results of an MRI to the existing data to be more certain about the case. The size of the gland also matters If your preferences include Brachytherapy. The MRI can provide those details. You can discuss further on the matter in your next consultation.

Best wishes and luck in this journey.

VGama

amdenver
Posts: 18
Joined: Dec 2020

Hi VGama:

Your additional information on Brachytherapy experiences is helpful and appreciated.

Thank You for the valuable other input as well from your deep knowledge on the subject. Laughing

I've started reading Bob Marckini's book "How to beat Prostate Cancer". As you probably know, he's a big proponent of Proton Therapy, which unfortunately my HMO does not provide or cover. In his staging of his reasonings for his decision against RP, he draws a rather gut wrenching pitcure and says that he was asked to bank 4 pints of his blood for RP.

I've no prior experience with any surgery, or such prep. I'm reading that our body can replenish the plasma for a pint of blood removed in 24 hours, but can take 4 weeks, or more, to replenish all the red cells. I'm on the lightweight side, at 140 lbs. So, banking 4 pints would be a challenge for me Cry

Is Mr. Marckini dramatizing, or closer to the truth?

Old Salt
Posts: 802
Joined: Aug 2014

There are numerous papers showing that proton therapy is not more effective than other current radiation therapies. Just more expensive!

ASAdvocate
Posts: 157
Joined: Apr 2017

Regarding brachytherapy and prostate size, i have read that size limits apply only to low dose (seeds), and not to high dose (momentary inserts) BT.

VascodaGama's picture
VascodaGama
Posts: 3353
Joined: Nov 2010

Hi again, 

Back in 2000 I did prostatectomy via open surgery which procedure typically required the patient to bank 400ml of own blood. In my case they asked me to bank a total of 800ml so that I had to draw blood two times in advance taking me 20 days to be prepared. However,  at those times there were no DaVinci systems (robots) which are today the traditional way for having prostatectomies. As far as I know,  in DaVinci type the patient does not need to give blood in advance because there is no serious cutting of the abdomen. They inserted robot's arms and camera via three holes so that not much blood is lost.

I hope that the survivors here tell you more about their experience. 

Best,

VG

 

Clevelandguy
Posts: 685
Joined: Jun 2015

Hi,

I had RP by DaVinci about 6 yrs. ago and did not bank any blood ahead of time. As far as I know I did not recieve any blood either. I had a overnight stay and went home the next day with an internal catheter.  Post Op was very uneventful, very little pain, no infections.  Had a bloaded loss of appetite for a couple of days I think because they inflate your abdomen with gas to give the docs working room. Great doctors +great facilities = great results. It pays in my opinin to get a doctor that had performed hundreds or thousands of Davinci surgeries.  Pm me if you need more details.

Dave 3+4

Georges Calvez
Posts: 521
Joined: Sep 2018

Hi there,

You should not have to bank any blood with modern robotic or laparoscopic surgical methods as they are minimally invasive.
The downsides are erectile dysfunction, the percentage of men that experience this are quite high even with younger men that have very good erectile function before the operation.
There is also a finite risk of incontinence, most men recover more or less with maybe the occasional drip under strain, but around 5% leak badly.
Good surgeons have better results than the inexperienced, but they all have bad cases.
Radiation has its own problems.

Best wishes,

Georges

Georges Calvez
Posts: 521
Joined: Sep 2018

Hi there,

I had a look at the surgical notes from my laparoscopic RP and the estimated blood loss is 100 ml or less than half a cupful.
I reckon I lost more than that when I cut my foot on a piece of broken glass on the kitchen floor, I managed to soak a couple of pieces of kitchen towel before I got the bleeding under control and stuck on a dressing.
On a lighter note, last night was Burns Night, so we had a haggis that arrived in a tin and had to be fished out and simmered lightly before eating.
We are having some Breton sunshine at the moment, the sky is leaden grey, and it is pouring it down, but the snowdrops are out!

Best wishes,

Georges

amdenver
Posts: 18
Joined: Dec 2020

Folks: Hope everyone is doing well !

(For new readers summary of my situation: No PSA test in prior 15 years, until I had some issues w/passing urine last Dec., then PSA was found to be 25 (22 10 days later), biopsy showed Gs 3+3=6 on one side and 3+4=7 on the other. Graded at T2c)

Had met with the Uro/Surgeon last week. Just came back from my meeting with the RO. Between them my initial options:

Surgical:  RP (overnight stay) + 2 years of Lupron. Surgery recovery: 3-4 weeks. Said radiation too would probably be needed after 6-10 years. Post Op aftereffects mitigation period: 6-12 months. Up to 10% patients have permanent incontinence.  Uro did not mention long term PSA control %

Non-(Semi)Surgical:  Casodex for 2 weeks, then 1st Lupron shot at end of 1st week. Two months later HDR Brachy followed by EBRT Boost starting a week later (20 daily M-F sessions) Total two 6-Mo Lupron shots. Brachy will be single 16-needle session with lower half anesthesia. In at 7:30, discharged at 2 PM. Post Op aftereffects mitigation period: 3 months. Brachy+Boost long term PSA control chances: 83%

The RO is 15+ year at his craft and specializes in HDR Brachytherapy. Is among the top rated ROs in CO.

Uro says has done about 500 RPs and said he's adept at saving nerve bundle whenever he can.

Between the two specialists my comfort factor is greater with the RO. Same for Brachy Boost between the procedure options, so leaning towards it.

Thoughts from my comrades?

Anyone see any major issue(s) with the Brachy Boost plan?

Thanks

 

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Hi, Denver

Remember that surgery will probably not be an option after radiation. After radiation the "cooked" prostate will fuse with surrounding tissue, making it very difficult, if not impossible to remove later on. I hope your surgeon mentioned this to you.

Also, ask them about the size of your prostate. I was told that because mine was very large (120 g) I was NOT a good candidate for radiation. It seems there is a general rule: The larger the gland the less effective radiation may be.

Good luck with your decision. Take your time and consider second opinions.

amdenver
Posts: 18
Joined: Dec 2020

Hi Yank:

Appreciate your feedback.

Actually, before meeting my Uro and the RO, I had already learned that Urologists don't like to do salvage surgery after radiation. And the Uro mentioned that too.

IMO, whichever way we cut it, the choice between treatments comes down to a gamble to stay alive. As you know at all times there are different studies in progress, which are comparing treatment methods, and combination of treatment methods, to see which has the lowest rate of recurrence at 5 years, 10 years, etc. There is no one method which stands out on its own.

The Uro/RP surgeon could not give me any specific numbers for non-recurrence after RP but the RO said that they are following the latest ASCENDE-RT studies which have reported a lowest long term recurrence from a combination of Short HT+EBRT+HDR Brachy. So, in this bet, that I have no option but to make, I'm putting my chips on the long term retreatment numbers.

Another factor, that I have formulated on my own, is that even with this combo method's recurrence probability at 17% -for my numbers-, I assume that I won't be that lucky and will face re-treatment at 5+ years. Re-treatment is always radiation+ HT, so it may have a sliver of better 'protection' for adjoining organs to have some prostate mass than for a void. There doesn't look to be eventual escape from radiation, or from HT, so it comes down to with or without the prostate. Just my own thoughts.

With this reasoning I've decided to go with this trifecta combinaton and hope that I'll be in that 83-84%. Here is one of the links to the ASCENDE-RT study:

https://pubmed.ncbi.nlm.nih.gov/28262473/

Wish you the best with your management of PCa.

 

Clevelandguy
Posts: 685
Joined: Jun 2015

Hi,

You should feel assured that you are going down the proper path for your situation because you did your research and made a choice.  Hope the best outcome for you and glad that you have decided and rationalized it in your mind to be the proper course of treatment. Hope for many more years and a quick recovery.

Dave 3+4

VascodaGama's picture
VascodaGama
Posts: 3353
Joined: Nov 2010

I agree with Dave's opinion above. The decision you have reached seems proper to me too for the circumstances you describe above. After all you consulted the experts and are now satisfied with an option. Being comfortable with a decision and trusting the doctor caring for us is a big step forward for a successful outcome.

I wonder the radiation grays (absorbed Gy) planned is each modality. Also important will be the timing for EBRT as that may affect the sphincter area.

I  recommend you to discuss with your radiotherapist on the details of the isotope planning taking special attention with regards to the side effects. Low doses do not kill the bandit but high doses in unnecessary areas produce no successes. 

Best wishes for the best outcome. 

VG 

Old Salt
Posts: 802
Joined: Aug 2014

that your treatment plan is based on the best evidence currently available.

Maybe it will be of some comfort to you that I am still kicking seven years after 'triple play' therapy (SBRT + EBRT + 18 months of ADT) for localized (Gleason 9) prostate 'disturbances'.

 

Best wishes for a successful outcome.

amdenver
Posts: 18
Joined: Dec 2020

for your feedback and your kind thoughts.

I pray for you to have and keep the winning hand against this monster !

Best Regards

Arnoldpig
Posts: 13
Joined: Jan 2021

 I had my RP last Aug 12th 2020 and it went well. Iwas in and out in 5 hours and went home the same day.. Before surgery my PSA was 20 and gleason was 9... I Played golf Oct. 28th 2020 after sugery...I Have some small urinary leakage when I strain but getting better..  I have to do some follow up radiation and ADT because my PSA was detectable with 0.14 after surgery..but looking forward to many more years on the golf course and I am 78..

AP

amdenver
Posts: 18
Joined: Dec 2020

Thank You for your kind thoughts. Wish you well too Arnold. All the best for things to stay on track for you.

You and I can be treatment buddies, almost. To compare our treatments. I am about finishing two weeks of Casodex and had my 6-month Lupron injection last Friday.

Next stage will be the fiducials (gold markers) and 20-session EBRT in 2 months from the Lupron. Then a 3-4 hour HDR Brachy procedure, with needles.

I'm D+4 from my Lupron intake and waiting -with my seat belt fastened-  for the side affects to come Embarassed Hopefully, they'll be not too severe.

Best wishes to you for your treatment to be successful !

AM

Gs 7 (3+4), T2c, PSA=25 at Dx (down to 17.9 at start of HT), Bone & CT scans clear, MRI: PI-RAD=5

Old Salt
Posts: 802
Joined: Aug 2014

If at all possible, exercise one way or other to counter the side effects of ADT. You may well feel tired because of the hormone and radiation treatments, but try to be active anyway. 

Unfortunateley, the hot flashes, which are likely to come, will be worse once it warms up (unless you are living in an area that is already warm in the winter).

 

PS: The next time you get tested, ask for a testosterone test as well to make sure the ADT is 'working'. 

jeffsch
Posts: 2
Joined: Feb 2021

I was just diagnosed with prostate cancer today.My PSA was 6.5 and my Gleason score was 9.I'm scheduled to do an MRI and a bone scan.I don't know much more.Not  a good news day today.Not sure where to begin.Anybody have any thing postive about this?Or can you share your experiences?I nwant to learn more about this.thank you

amdenver
Posts: 18
Joined: Dec 2020

Hi Jeff:

My own experience with PCa is just about two months old. I was in your shoes on Jan 13th-2021. Have come a long way since.

With the bone scan and MRI your physicians would be looking to assess if the PCa is still within the Prostate capsule, or has gone beyond. Treatment plans will be different accordingly.

You've gotten the bad news but the good part is that like other manageable conditions, like Diabetes and BP, etc. PCa too is manageable, with variety of and different levels of treatments.

May I, respectfully, suggest that you post your query as a new topic?

Chances are that more folks will see it as a new topic.

Wish you the best on your PCa journey.

amdenver
Posts: 18
Joined: Dec 2020

Team:

Hope everyone is in good spirits and doing well.

As I wait through my countdown towards the beginning of my 20-session EBRT after getting the Lupron shot, my RO wanted to do the next PSA test not before August. But not knowing the PSA is a part of the anxiety I'm living with, so I decided to go around him and am planning to test it every 30 days. Atleast through my treatment, which'll be until June end. So, got this test done by an independent lab, outside my HMO.

I also was interested to know the PSA status because since my Dx I've been conducting a 1-person study on myself with medicinal mushrooms. Wanted to see if there's any truth that some mushrooms and their supplements help against PCa.

At the time when I was waiting for my biopsy, I could see at minumum 4-6 weeks before ANY actual treatment would begin, so I immediately began the mushroom diet and supplement regimen. There was some encouragement with the initial results so I have continued with them even after the Lupron shot, as an adjunct therapy.

With that said, here is my PSA tracking, timeline and results so far:

12/26/20: Initial PSA test: 25.02

12/30/20: Began my mushroom supplements

1/6/21: Follow up PSA test by Uro: 22

1/12/21: Biopsy (Gs 7 (3+4) T2c

2/15/21: PSA 17.9 (Began 2 weeks of Casodex)

2/19/21: 1st Lupron 6-month shot

3/19/21: (D+30): PSA= 1.7

Just got the result. What I do not know is how much of PSA reduction is expected at D+30 after the Lupron intake, but looks like there may be something with the medicinal mushrooms.

Thoughts ?

 

Old Salt
Posts: 802
Joined: Aug 2014

as it's supposed to. Good news!

Your musthroom 'experiment' can't be evaluated; too many variables because you are also doing androgen deprivation therapy (Lupron).

Personally, I would discontinue the 'medicinal' mushrooms and stick with the diet that the rad oncologist recommends. 

 

VascodaGama's picture
VascodaGama
Posts: 3353
Joined: Nov 2010

From your update calendar, at 2/15/21, the reduction of the PSA from 25.02 to 17.9 could be attributed to the effects of the supplements. After that any further reduction of the PSA would be considered a cause from the ADT (casodex and lupron). The last PSA+30 is therefore masked and only served to confirm the effectiveness of ADT in the combination treatment (HT+RT).

This value will continue its descent till a nadir, maintaining a plateau while the effects from the lupron shot is active, but it will gain significance only mush later once the effects of the ADT vanishes, approximately 4 months post the end of the effectiveness of lupron (6+4=10 month from the date of lupron's injection). In my opinion your doctor's recommendation in doing the test in August was correct but it also would be used solo as a threshold at a particular timing of the treatment, usually fixed to a certain date after RT.

In clinical trials some supplements have shown reduction of the PSA but none up to day have shown to be effective in combating the bandit. Some supplements incorporate substances used in the ADT drugs which by itself is known to influence the PSA. I also took supplements after my diagnosis thinking them to be good but they only treated the PSA not the malady. Cancer was always there, dormant-like for some periods but alive and kinking.

The RT is the one aiming cure. It destroys the DNA of the cancerous cells prohibiting duplication along its life cycle. This may take a period between four and six months which is the life period of a prostatic cell.

I agree with Old Salt comment above. You should inform your doctor on any "adjunct therapy" you do while under his treatment.

Best wishes for success.

VGama 

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