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Recurrence-Looking for information

mjbruce
Posts: 10
Joined: Nov 2009

Hello everyone, I am officially out of the zero club. 22 months after RP, my last 2 psa's were .4 and .3(a week later tested at the same lab). My local urologist and the surgeon who performed the robotic assisted RP are in agreement that I'm having a recurrance. The drs. both suggest salvage radiation therapy My radiation oncologist has suggested short term hormone therapy with Trelstar. Two shot lasting six months. 39 visits for the radiotherapy. My history (off the top of my head): 1st PSA(ever)at age 50 on my regular yearly physical exam on 6/2009 was 12.9, I was then sent to local urologist for another PSA 7/2009 which was 15.2 The biopsy soon followed. 10 of 12 cores were positive(can't remember %) Consulted with two different surgeons and a radiology oncologist. Was interested in Cyberknife, but they told me my Gleason was too high. Finally decided to have the RP done. CT Scan and bone scan didn't show anything at all, it appeared as if the cancer hadn't spread. My cancer was graded T2C. The initial the Gleason was 4+3=7. My pre-op bloodwork showed PSA of 19.8 Surgery went well, and surgeon removed seminal vesicles and several lymph nodes. Recovered all functions within a couple of months. Use viagra ocassionally, leaky once in great while(no worse than before surgery) Post-op pathology showed no perineural invasion, margins were clear, although the cancer was very close to the margins. No cancer in seminal vesicles or lymph nodes. There was some capsular extension and I believe the weight of my prostate was around 29 grams. Final Gleason score was 3+4=7. All subsequent PSA's had been undetectable until 9/1/11. I'm looking for any information about short term hormone therapy used with radiation. I'm finding some info on the web, and if anyone has had these therapies, your advice and experiences are greatly appreciated. Thank you, Michael

Old-timer's picture
Old-timer
Posts: 162
Joined: Apr 2011

I recommend that you not rush a decision. Check the PSA after another three months. It seems to me you could defer further treatment until the PSA reaches 1.0. That was how my urlogist dealt with my recurrence. As you probably know, there are questions about the reliability of PSA as a measure of prostate cancer.

I am not an expert on prostate cancer, but I have lived with it 20 years. I had surgery in 1991, radiation in 2005, and hormone therapy in 2008. The original surgery was successful for 13 years. The radiation was unsuccessful. Because of the hormone therapy, my cancer is now in remission. I am 85. I would be glad to comment in further detail if you wish. You may find other discussion board entries of mine by using the search engine.

Good luck to you.

mjbruce
Posts: 10
Joined: Nov 2009

Thanks for your post.
Did you have short term or long term hormone therapy?
What did they give you? How were the side effects?

tarhoosier
Posts: 193
Joined: Aug 2006

Michael:
I think that your radiologist is correct that radiotherapy with hormone deprivation will be of likely benefit to you. The first question is when to begin. You could try supplements, diet changes, weight loss and other mild non-prescription treatments for the next few months to see if some delay could be gained. This is unlikely to be a long term answer though you may wish to try it if you are willing to deal with psa anxiety and if you accept the concept of delay of treatment. You must have your psa checked regularly and certainly more often than every three months. You could try ultrasensitive tests (to 2, or 3 decimals) if you accept the added anxiety. Monthly would be best: Same lab, same protocol, same time of day for blood draw.
Any G 4 is of concern and the pathology showed close-to-the-margin and ECE (extra-capsular extension), factors for local spread. Proper radiation with the best of modern equipment in the control of a top radiologist is a kind of magic. I am convinced it would work on you. No one can predict long term results effectively, as the man who posts here just before me can attest.
There is significant information out there about adjuvant hormone treatment with radiation and the best I can say is that there is nothing that shows the results are less than radiation alone, and many trials and reports show that it is better, at least within the time period that the men were followed. Any effects from radiation are reversable, with the possible exception of delayed impotence. Ask your doctor (as they say).
It appears you had a good surgeon who did the best he could and if your radiologist is as good, or better, your long term chances of success are reasonably strong. I wish you the very best.
I am certain that the recent report that the USPSTF recommends eliminating PSA tests for men would cause you to be concerned.

ncobjim
Posts: 35
Joined: Nov 2010

Micheal
Your numbers are close to what i had. Had RP in 2006 after PSA of 4.8 with Gleason of 3 + 4 =7
Post RP went to 0.05. Stayed that way till spring of 2009. Went to 0.1 in spring of 09 then 0.2 in winter of 09. Went to 0.4 in spring of 2010. Was sent immediatly to Radiation Onc.
Had 38 IMRT treatments along with Trelstar 6 month HT. 2 shots 3 months each. Did not really have much trouble with the HT. Hot flashes were not real bad. It did cause me some bad sleeping problems but i finally got the right meds to help out till i was thru it.
In May of 2011 my PSA was 0.01. Go for another test in November. Makes it nervous time again.

Hope whatever decision you make turns out good for you.

mjbruce
Posts: 10
Joined: Nov 2009

Thanks for your encouragement and advice. Still trying to gather all of the information I can. Should know Monday if my insurance even covers the hormone therapy.
Two of the my 3 doctors are advocating the therapy, saying their experience with it has had positive results. The other, while not really against it, believes the proof of benefits aren't sufficient enough for him to go ahead and order hormone therapy.
I have to say at this point I'm leaning toward getting the shots(Insurance company may have the final say). But, like I said I'm still trying to learn more.
I'm not the watch and wait type of person. PSA anxiety was pretty brutal for me, and the pathology of my cancer leads me to believe that waiting may not be the best thing for me to do.
I,ve always been active and have been more diet conscious than ever the last 7-8 years

NCOBJIM- if you don't mind me asking, have you had any problems with delayed impotence after radiation? It's ok if you don't want to respond.
My e-mail is mnbruce@hotmail.com if you want more privacy

Tarhoosier: I take it you lived in Indiana at some time? Northeast IN, north of Ft. Wayne

CAN NOT IMAGINE! where I'd be right now if there were no PSA. I had virtually no symptoms, a little leak maybe once, twice a month, thought it was my own fault for holding it too long.
Over 2 years later now, can only guess where the cancer might be by now!

mjbruce
Posts: 10
Joined: Nov 2009

Recent PSA(12-4-15) has revealed an increase in PSA level. .3 on this test.

Had been .1 for almost 4 years since this recurrence after salvage radiation.

Consulted with medical oncologist, who ordered another PSA(.4 at different lab).

Dr. ordered monthly PSA's for the next 6 months. Next test due 1-11-16.

This is all after having salvage radiation with short term(6 months) hormone therapy. 

I was told that imaging won't show where cancer is until it reaches 2.

Seeking advice from knowledgeable members or someone who has been through similar circumstances.

My earlier few posts give some history into where I've been. Please note that initial Gleason was 3+4=7, pathology following surgery was 4+3=7

Thanks for any and all guidance and insight into future scenarios as to treatment for this.

 

 

 

VascodaGama's picture
VascodaGama
Posts: 1918
Joined: Nov 2010

Michael (mjbruce)

Your journey is similar to that of mine. The initial diagnosis, at the age of 50, also indicated a voluminous cancer mass and high PSA (22.4). My Gleason score was lower than yours (2+5; 6) but I also had positive ECE with negative lymph nodes and negative seminal vesicles. After failed RP I did SRT and experienced recurrence 4 years later. At a PSA level of 1.0 ng/ml I started HT (in 2010) which has successfully controlled any progression of the cancer. The HT protocol is to be administered intermittently (On/Off periods with drugs). Since 2012, I have been on “vacations” from the drug enjoying a long period without treatment’s side effects.

The most peculiar aspect in my case is that, in 2001 after failed RP, it was diagnosed as micrometastases, attributed by several PCa experts. Their conclusion on this status was based on the size of the gland (normal), on the negative DRE (pre op), on voluminous cancer and negative image studies (before and after RP, and after RT) even with high PSA numbers. Under the microscope this sort of tiny tumour seems to spread in a vast colony not accumulating to form a solid bigger tumour.
After reading the details of your case I wondered if you have such type of cancer too.

The problem in micrometastases cases is that the cancerous cells depend on androgens to survive, permitting us to control their progression with androgen deprivation (ADT), but due to their tiny size it does not allow us to locate their hidden places, permitting therefore, an “accurate” attack with radiation. We may be doomed to be systemic and die of the cancer or die with it.
In any case, I believe we manage to control the bandit and live many years with quality living, while newer techniques arise to treat all PCa types, including the systemic cases.

I am doing just that. I am looking for means of detecting the location of the cancer. You can follow my story through the links of this thread;

http://csn.cancer.org/node/290854

Systemic cases are traditionally treated with chemotherapy because the effect reaches all corners of our body, but these “chemicals” have no successful “stories” linked to cure. ADT is still the best means to handle these cases providing long periods of palliative control.
I hope that through newer investigations on radiopharmaceutical, researchers manage to find proper tracers and means of attacking (killing) micro tumours. You can read my comment on this subject in this link;

http://csn.cancer.org/node/299085#comment-1525943

I would recommend you to be vigilant with your lipids and get testosterone tests along with the PSA. Your cancer is surviving on testosterone so that it is important to know how much of the stuff is circulating in your body.
You can read details on hormonal therapies from this (old but still good) book informing all aspects in treatments for systemic cases:
Beating Prostate Cancer: Hormonal Therapy & Diet, by Dr. Charles “Snuffy” Myers

Physical fitness programs and proper nutrition are important when dealing with prostate cancer and treatment side effects. UCSF got a publication on Nutrition & Prostate Cancer, here;

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

 

Best wishes in your continuing journey.

VGama

mjbruce
Posts: 10
Joined: Nov 2009

Thank you VGama for your reply. Very much appreciated.

I kind of expected that you would reply, although it's been quite some time since I've posted on this forum.

I ran across one of your posts while searching the web, and saw the similarities in our histories. So I sent out the update.

The medical oncologist told me no ADT(at least for now). We'll monitor the PSA for 6 months. Once doubling time is established, we'll see how we proceed from there.

I'm not too fond of HT, as I had a hard time with the Trelstar. I was having blood pressure issues at the time, which may have exacerbated the side effects. Also I've been told the younger patients have more difficulties with HT and older patients seem to adjust better to the side effects. I'm considering a 2nd opinion, but I think this is the proper course of action for the present time.

Any thoughts/comments are greatly appreciated. Thank you!

Michael

Old Salt
Posts: 179
Joined: Aug 2014

The recommendation from your Medical Oncologist makes sense to me. Anyway, your next PSA test is less than a week away...

I don't think a second opinion is necessary for now; it will probably induce your stress level.

Just a layman's opinion, of course

 

mjbruce
Posts: 10
Joined: Nov 2009

Thanks Old Salt, I appreciate your comment. Just trying to get through this waiting game. I do expect to eventually be put on ADT eventually. Meeting new urologist next week also, as mine has retired. Good days, bad days, as I'm sure many of us has been through. 

VascodaGama's picture
VascodaGama
Posts: 1918
Joined: Nov 2010

Michael (mjbruce)

Any significant variation of the PSA in guys without the gland (RP group) or “clean” of any medication (hormonal unbalanced biorhythm) means that PCa is in activity.
A fraction of the serum can also be produced from prostatic benign cells living in the small portion of the urethra tissue (left behind) but these are usually radiated during SRT. In any case, they could be still alive if they have recuperated from the radiation “blow” or even if not been included in the RT field by the radiologist. We are talking about tiny levels of PSA that can reach 0.02 to 0.04 ng/ml.

Your PSA= 0.4 is well above of the initial 0.1 (which could have been 0.05 rounded up), so that one could think that you are confronting recurrence. However such status is attributed generally after three constant increases from a nadir, in tests done at least one month apart. The tests recommended by your doctor are therefore needed and will provide details on the doubling that is used as trigger threshold to decide on a sequential, and on the time when to start. Any procedure should only take action after checking the aggressivity of the recurring cancer. Typically the “boundary-line” is a PSADT= 9.5 months.
Worse cases are below 4 months and best cases are above 14 months.

In my case the PSADT after SRT was 9.1 months. Nadir was 0.05 on the 13th month from the end of SRT (3.8 before RT) and then it climbed to 0.95 in a period of 33 months. My uro-oncologist used a PSA=1.0 ng/ml as the trigger to start HT due to the characteristics of my case and type of cancer (hormone dependent). Doctors use different thresholds but most of them prefer the typical PSA=2.5 to 5.0 ng/ml, to start a treatment. In aggressive cases they recommend a combination therapy of HT plus chemo starting administration the soonest.

You can check your doubling using the monogram of MSKCC;

https://www.mskcc.org/nomograms/prostate/psa-doubling-time

My experience with ADT was leuprolide acetate (Eligard) 6-month shot, three times. The side effects were numerous but mild. Fatigue was the worse, and shrinking of the testicles worrisome. I do not know if this drug has affected permanently any function of my systems. I was worried with pituitary signalling dysfunction, in particular any effect on the thyroid which damage could be unnoticed (maybe a constant tendency to eat).
LHRH agonists (leuprolide, triptorelin, goserelin, etc) flood the pituitary causing havoc in its signaling system which leads this gland to stop functioning (while the flooding exists). Without the signal (FSH) for producing testosterone, the testis factory goes on stoppage. However, other parts of the body requiring the “services” of the pituitary will also be affected, and that is behind a considerable number of side effects we experience. The worse cases are blurred vision and impaired recognition.
Trelstar, (triptorelin), your experience, may cause similar symptoms. Triptorelin substance is also not well “accepted” by some guys causing them to nasty experiences. These people are moved to other similar agonists (of other substances) or to a class of HT drugs named antiandrogens (bicalutamide, enzalutamide, flutamide, etc).
Some guys choose orchiectomy avoiding those complexities of the drugs (limiting the side effects to the hypogonadism causes) but this is a permanent status which should be avoided in particular by young patients. Testosterone is important in our physic, cardiac system and health in general. TRT patches etc, do not substitute our good function of the testis. It should be a choice when other means of control aren’t at reach.

Another drug used for the same effect of LHRH agonists is degarelix (Firmagon). This works in the pituitary differently by attaching itself to the glands GnRh receptors, not intervening in its function. In other words, LHRH agonists (Eligard, Trelstar, etc) increase the release of the luteinizing hormone (LH) directly involved in the “downregulation process”. Firmagon is a GnRh antagonist that will block the pituitary receptors. This procedure may avoid several side effects therefore making the treatment more acceptable to some guys.

What I want to say from the above is that you may try protocols made of different drugs and interchanging them before giving up with ADT. It seems that Chemotherapy produce worse side effects and other treatments for systemic patients (immunotherapy, vaccines, etc) are not that successful.

PSA will be your marker showing control or progression. I recommend you to use laboratories providing sensitive results of two decimal places (0.XX ng/ml) and getting tested every three months. The present level is still very low allowing you time to study your situation and pondering on possibilities.
Hormonal therapies lead to bone loss and PCa “loves” weak bone. Get a dexa scan the soonest.

 

Best wishes

VGama

 

mjbruce
Posts: 10
Joined: Nov 2009

Thank you VGama,

For your informative reply on how the ADT therapies do their work in lowering testosterone. It helped me connect a few dots from previous research I have done.

I am curious about doubling time also.

I used the same web site a few years ago to calculate the doubling time with my PSA scores before RP. The doubling time was just over 4 months. Is there any correlation in aggressiveness between pre-op scores and doubling time after recurrence or progression? 

Again, many thanks for your help, 

Michael

 

VascodaGama's picture
VascodaGama
Posts: 1918
Joined: Nov 2010

Hi again,

I am not aware of the use of PSADT before initial treatment. Typically it is used as a reference threshold for prognostic purposes after treatment, at each stage of our sequential “journey”. Some Guys on AS (active surveillance) do use the doubling time to verify increased aggressivity along their watching period.

As far as I know, there are graphics plotted with the data collected from thousands of cases, from which doctors signal thresholds that become important in the decision process. Thought, not all doctors follow these thresholds and some prefer other markers to evaluate a particular situation.
Before op the PSA level (also a prognostic tool) is more referential than the doubling, however the amount of serum is produced differently by different types of prostatic cells (benign or cancerous). Also, high Gleason grades (aggressive patterns 4 and 5) tend to produce lesser amounts of PSA, rendering these markers (single, velocity and doubling) to a lesser practical use.
In the initial exams (pre treatment) doctors prefer vPSA (velocity) to access aggressivity. After the initial treatment (RP or RT) the doubling becomes a tool to predict biochemical free length of survival.

Accordingly, your PSADT of 4 months pre op has no correlation with the aggressive status it might have the present recurrence.
In fact, the type of cells (Gleason) making the recurrence is unknown unless you manage to get a “sample”, but doctors take into consideration the initial grades. If a certain recurrence is found to be aggressive then the higher grade is assumed. In your case it would be the grade 4 (or 3 if longer PSADT).

PSADT is also used to access distant metastases after therapy. Your doctor will compared your numbers with the thresholds at his pocket (each physician has its own practice values) to recommend a type of therapy and the time to start it.

Here are materials to read regarding the PSADT;

http://www.ncbi.nlm.nih.gov/pubmed/15927415

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3375697/

http://www.cancernetwork.com/articles/psa-doubling-time-predicts-distant-metastasis

Best wishes,

VG

mjbruce
Posts: 10
Joined: Nov 2009

Thank you VG on the links you provided. They helped, and led me to other links for answers to more questions as well

Update on latest PSA, it came back at .2

We have moved testing to 2 months now as originally planned since this latest decrease in PSA. My oncologist had moved it back to 1 month after the slight increase previously. 

Had meeting with new urologist as well, he helped me with his insight and perspective also. Starting to wrap my brain around this a little better now.

While I may be destined to start ADT eventually for palliative management of this disease, I can't help but wonder why Provenge isn't a viable option for treatment in my case. I had read an article a couple of years ago touting this immunotherapy(can't remember who wrote the article) that suggested that Provenge could be moved upstream for cases that were circumstances similar to mine now. Are there no trials investigating this? Just curious if there's anything out there regarding trials that might apply for me. I haven't seen anything so far that fits me. My oncologist is looking as well.

Still looking, researching, and trying to learn more. 

Any input is greatly appreciated. Thank you!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1785
Joined: May 2012

 

Mjbruce,

I am unfamiliar with Provenge.  But in general, once a drug is FDA approved for use toward a disease generally (such as PCa), an oncologist has substantial flexibility in how he employs it.  This is very true in the realm of chemo, which is usually given in combinations of three, four, or more drugs (for instance, my chemo was a standard anti-Hodgkin's group known as "R-ABVD", with each letter standing for one of the five chemos involved).  Any oncologist can add or delete drugs as he deems fit, if there is reason to believe it will better aid the patient.

Jevtana and Zytiga were initially FDA approved as post-Taxane prostate cancer meds. But soon thereafter, they were also approved for use by oncologists for pretty much whenever they saw fit to start any metastatic disease patient on them, even if they had never receive Taxotere or other chemo.

It could be the case with Provenge.  I stress could be, I do not know this.   You would probably have to do a lot of research to find a medical oncologist at a research center willing to go out of protocol.  But it is conceivable.

http://chemocare.com/chemotherapy/drug-info/Provenge.aspx

 

max

 

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