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When to Start Hormonal Therapy?

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Dr. Patrick Walsh, on page 492 in his book "Guide to Surviving Prostate Cancer (3rd Edition) admits that hormonal therapy prolongs life and eases the symptoms of advanced prostate cancer. But he qualifies this by saying, "there's no evidence that giving a man early hormonal therapy—intermittent or continual—or giving more hormonal therapy than is necessary works any better than giving adequate hormonal therapy if and when the patient needs it.

 I assume this means do nothing until symptoms present.

 On the other hand, Dr. Charles "Snuffy" Meyers is a strong advocate of both intermittent or continual hormonal therapy for aggressive cancers with PSA numbers doubling within three months. And I assume there are many oncologists somewhere in the middle.

So. Who to believe? 

Following an RP and SRT my PSA jumped from 0.2 to 0.5 within about seven months. My own doctor favors starting HT as soon as possible, but we agreed to wait to see the results of one more PSA test scheduled for the end of June. I think he was a bit crestfallen because I did not want to start munching Casodex like popcorn from this week on his recommendation alone, but I thought it wise to research HT a little more before making such a decision together and he agreed. 

Anyone care to weigh in? I would really appreciate some input.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> 

No symptoms prior to dx.

2013/08 Blood test revealed high PSA of 13 (12.7). DRE negative.

2013/11 Transurethral bx revealed cancer in 7 of 21 cores. Staged T1c (DRE negative), Gleason 7.

2013/12 Second opinion upgraded Gleason 7 to Gleason 8. Scheduled surgery same day.

2014/02 RP with DaVinci robot at Tokyo Medical University Hospital. Catheter removed 8 days later.

2014/03 Post-op path report confirmed Gleason 8 and revealed up to 7 tumors ranging Gleason 6, 7, 8. Seminal vesicles and both pelvic lymph nodes removed and dissected, both vesicles and nodes were negative for any sign of cancer. One margin suspect (pathologist could not decide if it was positive, so it was judged “to close to call.”). Right nerve bundle was taken, left nerve bundle spared. Final staging T1cM0N0.

2014/03 Good recovery from stress urinary incontinence after 6 weeks, pad free after two months post surgery. ED remains a problem.

2014/08 Hospitalized again to repair large hernia at ventral Da Vinci incision above the navel.

2014 9/23 to 10/24 SRT with EBRT 30 sessions.

PSA scores:

2014 3/3 (0.1), 4/7 (0.1), 5/12 (0.1), 7/17 (0.2) 8/20 (0.2), 9/1 (0.3), 9/29 (0.2), After SRT 10/27 (0.2), 12/22 (0.3); 2015 2/16 (0.3), 5/11 (0.5)

Looks like PSA is on the rise

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...after my RP. As soon as the catheter was removed I went on Firmagon (no testosterone flare with that). After 3 months of Firmagon the doc switched me to Lupron. After 6 months of that he switched me to Eligard. 2 years and 4 months later I am still on Eligard waiting for the 3 - 5 months until it begins to clear my system. The last 6 month dose was last October, that was the last one of the series.

 

I had a localy advanced acinar adenocarcinoma with extensions, 1 vesicle involved, some nerves taken, M=0 N=0 G=7 PSA 11. The head doc's plans were to remove the 35 gram tumor, hit me with the ADT chemo as soon as the catheter was removed, then EBRT 3 months later for 40 sessions of 2 Gy each. I will have been on the chemo for between 2 years 7 months and 2 years 9 months before it begins to go away. The docs agreed that the recommended time frame for ADT chemo is about 3 years now. Why?

 

Because the typical prostate cancer stem cell lives about 3 years. There are 2 kinds of PCa stem cells, 1 is fat and stuck in 1 place. It gets bigger and bigger until it splits into 2 daughter cells. It can change form, however, become long and slender, able to put out extentions, wedge itself between other cells walls, let go its moorings and enter your blood stream to metasticize. When it finds a nice corner of your body it again changes form, puts out mooring cables, stops moving around, gets fat and divides until it has given you a bouncing baby tumor in the new place.

 

My understanding of the protocol used on me is this: They cut out the bulk of the tumor's mass to remove as much of it as possible and as many of those stem cells as they can get with that. Some few microscopic trace cells remain however. If there are any cancer stem cells in there still AND they are not refactory (independent of the presence of testosterone) then the docs hit you with the androgen deprivation therapy and an androgen agonist that blocks the action of any testosterone present in your blood stream. This because PCa stem cells need testosterone to grow, move and/or change form. If the stationary stem cell cannot grow it cannot divide and make another new cell. If the moving stem cell has no testosterone it cannot grab a hold of something and stop moving and it cannot reproduce in that form so it cannot start a metastes.

 

Now, the cancer cells are pretty messed up in shape and many of their organeles are either missing or only partially functional, they are usually low on mitochondria. Those organelles protect the health of the cell by dealing with oxidants, which can kill the cell. Radiation increases the oxidant levels in affected cells. The goal is to not kill too many normal cells while still stressing the cancer cells enough to kill them or shorten their lifespan to less than 3 years.

 

It is hoped that the combination of therapies will act synergesticly to kill (or allow to die of old age) all of the cancer cells from this instance.

 

 

VascodaGama's picture
VascodaGama
Posts: 2921
Joined: Nov 2010

Yank,

I am surprised that you still use PSA assays of a single decimal digit (0.X ng/ml), even without a gland in place. In any case, yours now is 0.5 which is much above typical remissions levels in SRT of RP similar cases. The increase from 0.2 may now indicate recurrence and probably meaning that you are confronting a systemic case, but palliative treatment does not lead to “better” outcome if administered earlier. I wonder the basis of your doctor’s assertion. The benefits in HT approaches occurs if our type of cancerous cells respond to hormonal manipulations, and such will happen independently of the level of PSA. My doctor prefers a threshold of PSA=1.0 to trigger HT administration in RP+SRT patients. Some others use higher marks at 2.0 to 5.0 ng/ml. Guys naïve of radical therapies use still higher thresholds at the 10.0 to 20.0 mark.
Gleason 8 are sort of aggressive patterns which may “generate” more concern but still it doesn’t impose earlier intervention in the basis of better outcomes.

An important step in your continuous treatment is to verify your real status. Are you confronting systemic metastases or oligometastatic cancer? The latter may still be treated with spot radiation that could provide you with cure. This is the theme you should research before starting HT if you have the courage to allow time for a higher PSA and advance with more detailed exams with C11 or F18 choline PET/CT, to locate the bandit.

Just goggle this; ”Oligometastatic prostate cancer”.

http://advancedprostatecancer.net/category/understanding-advanced-prostate-cancer/oligometastic/

Another important aspect of the HT administration is the protocol. What and when and how it should be administered. The best is to get advice from proper oncologists specialists in PCa. I am not sure if you find one in Japan.

A note on your initial comment above;
The war between Walsh and Myers is long, it started in the 19th. Walsh accused oncologists for using HT without scientifically proven basis. Walsh aimed at Myers because of his proven successes in treating PCa with simple “daily pills” and cocktails without the need of heavy treatments like surgery. In fact at the time Walsh was preparing his new book "Surviving Prostate Cancer” but had no “help” from oncologists to add “reliable” information in the book’s hormonal chapter. In one letter from Myers to Walsh he contested urologists that would use hormonal drugs but wouldn’t even verify the testosterone levels in a patient to certify the drug’s effectiveness. Urologists did not have a clue on why and how to administer hormonal drugs. They simply followed their association guide-lines. To Walsh it became the bitter-sweet comment that started the War of the Thrones. Was really a simple pill better than the five hours surgery to eliminate the cancer better?

This is the time when surgery was considered the “Golden Treatment” for prostate cancer in USA. Scholars around the world would educate newer surgeons in the top two PCa facilities, JH or MSKCC, and would follow their practice guidelines. However, this affirmation was based only on a compilation of data among radical treatments (RP and RT) which reveled high points for surgery in terms of 5 and 10 years biochemical free survival/failure rates, and the side effects outcomes. The Hormonal Treatment had fewer documented information at the time, in regards to protocols and outcomes that could be standardised to be presented with a “fixed” certainty and reliability. The book “The Primer” was the only published information regarding tests and HT successes and these were from a small cohort treated intermittently to proportionate these patients a period out of the drug’s effects so that they could have the libido back (enjoy sex) and experience a feeling of a normalcy period.

“Big PCa oncologists” had loads of information in their offices but had not shared or published them to the general medical world. These guys had years of experience with a wide variety of cases and knew well what would work or fail and what would recover a nasty case of a bad administration. In short words these are the “real” oncologists well experienced in the war against prostate cancer, and they are just a few among the 100 in the whole world that could help Walsh in understanding better about HT in the PCa contest, but above all, there are no standardized cases that could be grouped as Walsh does with his Yes or Not “nerve-spared technique”.
After all, Walsh is also an onco-urologist very good with the chisel in his hands.

Best wishes and luck in your continuing journey.

VGama

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

My hospital does not used super sensitive (double-digit) testing. My doctor said that if we allow the PSA to go up to 5, he would like to do a bone scan.

I am aware that Walsh and Meyers are not fond of one another. However, the doctors in my hospital here in Japan are disciples of Dr. Walsh's methods at Johns Hopkins. I worry about their attitude and methods regarding HT if they  blindly follow Dr. Walsh and his attitude toward HT. As you suggested, it may be time to seek an oncologist with more experience who is more open.

I need to find out if the advanced scanning methods you mentioned are being done here in Japan.

Most helpful. Thank you for the link.

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Stoniphi, thank you for your detailed comments. 

I am slightly puzzled about why the EBRT in my case had little or no  effect.

Possibly a distant met?

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

 My story may or may not be useful to you, but I am glad to share it. I had radical prostatectomy in 1991 at the age of 65. Gleeson score of 7 (3+4) and PSA at 4.0. PSA dropped to 0 after surgery and remained at that level 11 years. In 2002 it was .2. It took two years for the PSA to reach 1.16. I then underwent 36 sessions of radiation, in 2004. My PSA continued to rise; the radiation did not succeed in stopping the cancer. My urologist said I should go on hormone therapy when the PSA reached 5.0. In 2005 I moved to another city and changed urologists. The new person said we could wait until the PSA reached 10.0. It reached that level in 2007. For reasons too lengthy to explain, we ended up waiting until 2008. By then the PSA was at 20.4. In June, 2008, I went on hormone therapy. The PSA dropped to less than .1 and is still at that level after 7 years. The side effects of the hormone therapy have been tolerable. I expect that this would be more of an issue if I was a younger man. I am nearing the age of 89 and faring well, both physically and mentally. I attribute this primarily to luck; I am thankful, happy, and optimistic.

Good luck to you.

Jerry (Old-timer)

 

 

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Hi, Jerry

Your comments are always welcome and useful. I find it interesting that your doctors allowed you to wait so long before going on HT.

No one could agree? First PSA 5, then PSA 10. Quite a difference. And then you did not actually go on HT until you went over PSA 20?! My doctor wanted to put me on Casodex with only a jump from 0.3 to 0.5. Like you, SRT had no effect on my PSA. Maybe they forgot to turn the machines on?

I sailed through radiation with no problems. I hope I have similar luck with HT (like you did) because that is where I am headed next month.

Thanks again for your input.

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...as the EBRT would only be effective in the target area. It has only been a year and 10 months since I got my 80 Gy of x-rays. While the side effects are still present, I won't really know if any/all of the treatments I have recieved were effective for many years now. As Vasco has pointed out elswhere, the possibility of micro - metastises is always there despite the docs not finding anything with bone scans and such.

 

At age 64, the ADT side effects are annoying but tolerable as are the EBRT side effects. Much of the treatments seem to be 'kicking the can down the road' though. I have a good freind who recieved radiation treaments for PCa at age 89. He is still putting at 94 though he is slowing down now....he bled a lot.

lathanb
Posts: 4
Joined: Apr 2015

Old-Timer,

Could you please describe the type of Hormonal Therapy that you were treated with? For example, did you take a luteinising hormone blocker and an anti androgen together?

 

                                               Best Regards,

 

                                                            lathanb

VascodaGama's picture
VascodaGama
Posts: 2921
Joined: Nov 2010

Yank

In Japan the oncology profession is very much linked to an extra-curriculum of an urologist. Among them you may find some that are more experienced with hormonal treatments. Typically these are not prime surgeons but have been involved in surgeries with a different function.

I have posted in this forum before about the theme of hormonal administration with a link to a Japanese study that you may find it interesting. You could also try getting the contacts with the authors because these may be the right persons in Japan to assist you in your decisions.

You can find the link to the article in my thread here;
http://csn.cancer.org/node/213002

Several guys of this forum have experiences with the so called oligometastatic treatment to whom you can email via CSN, if you want to get more information. One is Traveler who has been looked after by a medical oncologist at Singapore. His story can be followed in these threads;
http://csn.cancer.org/node/220246
http://csn.cancer.org/node/261390

PET/CT exams are performed in Japan too. The traditional F18 FDG (Fludeoxyglucos) exists since 2003. However, this contrast agent is prune to false negatives because of the characteristics of the prostate cancer cells in regards to the glucose. The recent C11 choline has proved to be better and may be already in practice in Japan. The F18 FCH (Fluoromethylcholine) is newer and proved to be as well as effective in locating prostate cancer metastases apart from been easier to handle than the C11. The god with these contrast agents is that they have been effective (providing true results) at lower PSA levels above 1.5 ng/ml. Please goggle this sentence (F18-FCH Pet/CT) and get details from NCBI sites, where they compared several exams with different contrast agents.

After gathering the elements you can inquire with your doctor about possibilities in aiming the exam firstly instead of starting ADT. I am also now waiting for an increase in PSA to have one of those exams before restarting HT. In my last consult, the doctor placed the threshold at PSA=2.0 for restarting my ON-phase IADT. This will provide me the opportunity to involve in one of those tests without prejudice of my main treatment. Interestingly, I even may be involved in an image study trial to be done in Coimbra University Hospital (Portugal) with a still newer contrast agent named Ga68 PSMA PET/CT that has been successfully tested and proved in a German phase-I trial. This contrast allows still lower levels of PSA to guaranty a true positive result.

I would take the chance if in your shoes. Nothing to lose.

Best,

VG

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Vasco, thank you for the information and the links.

My search continues for a hosptital that can do the C11 Choline PET scan. The results of my search so far: The technology is  "licensed" Japan and is being used in clinical trials. Dialing up and talking to someone at a hospital is just not  making it happen because staff do not know the technical details about what is going on in their own hospitals. I will need to visit some hospitals and camp on their doorstep until I can be some anwers to a very simple question: Do you have the choline test or not? Of course, my doctor may surprise me and have the  information I  need  or offer a more creative approach. I need more research before I talk to him again.

I have found some papers on research on C11 Choline PET scans here in Japan, so I may need to  contact the authors to see if they know where the test is  being done. I located one hospital where the F18 FDG PET scan is in use so this may be an alternative.

I need to find the choline test here so my insurance can cover it. Else I could go to the Mayo Clinic in the US and pay out of pocket. I have heard that the test could cost $2,500-3,000. Apparently, facilities that can do the test are very few in the US as well (mainly Mayo Clinic), but this may be changing rapidly.

My next appointment with my doctor is 19 June. I need to decide if I want to wait until my PSA rises to 2 (the threshold for best results for Choline PET scan) or start HT immediately. My doctor's recommendation to start HT at our last meeting was rather casual (without details about a treatment plan) really caught me off balance. I need to present ideas about  alternate treatment if the cancer is in fact oligometastic or systemic at this page. Forging ahead with HT without examining the possibility of focal treatment seems reckless, especially in light of Dr. Kwon's successful approach at Mayo Clinic in treating recurrent oligometastatic cancers. I need to have the facts in hand before I can consult with my doctor carefully without giving offense in not taking his advice to start HT immediately. Some MD's here are easily offended...

Or, I can also take Vasco's advice and find a cancer center with more experience in HT. 

The search continues and I thank all of you for your comments.

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

It was my decision to wait. I had an upcoming trip that I wanted to take before going on hormone therapy. My age, over 80, made me more willing to take the risk than had I been younger. Another factor: my PSA actually dropped some after two 3-month checkups. My urologist was a bit nervous about going past 10.0. But he and I had a kind working relationship and he wanted to please me (I think). He said there was only about a five percent chance the cancer would rise up and smite me. I was OK with those odds.

I will be watching your posts to check up on your progress. Good luck.

Jerry (Old-timer)

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

My case is not the same, as I still have my prostate along with massive bone matasteses. I opted for castration. I tried HT and for one year and had an anus horribilus where my quality of life was not worth living.  I am now 83.  I have stopped all treatment for the last year, including bicalutamide.  In that time, I have rebuilt my body to a high competition level and have a great quality of life.  I do not bother with PSA tests anymore.  I did go to the Urologist two weeks ago.  He did a DRE.  He was inside so long that I asked him,"Doc, you have been in there for a long time. but, then, whatever turns you on!!!"  LOL!!!  He replied that in the DRE before, my prostate was hard and very lumpy.  Now, the prostate was smooth and soft.  He was looking to find the cancer lumps, but could not.

 I have no ldea what this means.  I am not testing anything anymore.  I am just doing my naturopath stuff, working out very hard in the gym six days a week.  I am doing the Advanced Matrix weight workout doing 94 repetitions, 20 seconds rest and then 94 more.  It is a very, very intense workout, but super effective.  I totally believe that my diet and time in the gym are keeping my bones strong, my mental state free, and my life is superb.  I am not recommending anything to anyone.  But, I want to say that there are no rules for this PCA that apply to all, and that , in some cases, the treatment may be worse than the disease.  Hard workouts will stimulate testosterone production, as will some veggies like brocolli, and I eat a lot of that along with Guayabano every day.  I work with my mind-body connection every day.  When phamaceuticals are tested in double blind studies, often the pacebo control group experienced equal benefit as the group given drug.  There is no question that the mind can be a great healer or can also create great illness.

  I contribute this only to remind that some of these PCA drugs have horrendous side effects and that there is more than one way to look at things.  Do not simply take meds and treatments without being aware that you may react differently.  Doubt all doctors until proven otherwise.  In the end, success my come only from YOUR decisions about your health rather than some outside source.  

Love, rakendra

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

I remember seeing some of your posts, just after I joined the group. I appreciate you sharing your experiences with the beast (the bandit), whatever you want to call it. You have been at this a long time and I respect your views.

I have completely changed my diet and I will increase the amount of exercise that I am doing. It is encouraging to know that diet and exercise has been working for you.

One of the most valuable things about this site is that people share experiences. It is a great sounding board for checking what doctors tell you and confirming or denying information you can get from books or the Internet.

I  will have to make a decision soon regarding HT. I keep thinking: "Why should I poison my body with toxins now while I am feeling good?" I have yet to find an answer.

Hang in there, and thanks.

VascodaGama's picture
VascodaGama
Posts: 2921
Joined: Nov 2010

Yank

You may find the C11 exam at the National Cancer Center in Tsukiji, Tokyo. However, you will only be attended here if you become an inpatient. They do not accept outpatients but they would accept you if your doctor sends them a referral.
Back in 2000, I was treated at Toranomom hospital but had a second opinion in the NCC at Tsukiji. Such turn to be helpful for many years as an outpatient status. My last consultation at NCC was in 2010.

In any case, you can try the exam at a closer country (to Japan) that is acceptable by your type of insurance. I do not know what you have but my experience in using the Japanese National Health System (government health insurance) is that it covers overseas medical expenses, with some reservations to the cost of the occurrence. The system has agreed fixed maximum amounts in each item (consults, medications, interventions, etc), therefore the expenses could be totally covered or partial with one paying the difference.
They usually do not accept USA treatments because these most of the times represent totals in “huge” amounts (no detailed bills), but expenses at Taiwan, Singapore, The Philippines, etc., are typically acceptable. All one would need was to submit copies of the paid receipts (detailed by item of expense) at one’s local Kuyakusho’s health department/office. You may try to investigate at your place for detailed information and get the forms required by them in hand for local assisting doctor’s signature, before departing Japan.

I know that the Singapore General Hospital does F18 FCH (flurocholine) PET/CT exams. I am not sure if they accept outpatients for such exam but you could get informed emailing them directly or from Singapore Johns Hopkins that uses this hospital testing facilities. Note that F18 choline (FCH) is different from the F18 fluoroglucose (FDG). The latter is not as much reliable as the former in case of PCa metastases in soft tissue. It also requires lower PSA levels in real positive results.

http://www.sgh.com.sg/Pages/default.aspx

http://www.medscape.com/viewarticle/557887

If you are a US citizen under a US medical system you may try getting involved free of charge in the Ga68 PSMA trial in the USA. In this you would get the chance of being included in both cohorts: the Ga68 and the F18 FCH. Here are details to the NCI trial;
http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=759950&version=HealthProfessional&protocolsearchid=13531747

 

Hope my post is of help to you.

VGama

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...With this statement: "I keep thinking: "Why should I poison my body with toxins now while I am feeling good?" I have yet to find an answer."

 

By attaching the label "toxins" and its actions as "poisoning my body" to ADT chemo you judge and condemn the treatment up front while still appearing to be considering it.

 

My acinar adenocarcinoma was caused by a change/mutation in several of 17 chromosomes. Those changes came about from my exposure to lead and/or arsenic. Those are actual toxins. In large doses they will flat out kill you dead right now, in smaller doses they can/will give you prostate cancer. They can give you chemicals that prevent your cancer cells from growing, moving and reproducing which can potentially save your life and kill your cancer.

 

My prostate cancer is not my pet. It is not a natural part of my body. My cancer is the poison that can kill me dead. The drugs I have taken to prevent this are medications. Yeah, they have (trivial) side effects such as an inability to maintain and grow muscle tissue. I recall our friend rakendras upset over that particular side effect and his decision to stop the ADT after a month due to those. I am glad he appears to be OK thus far, though I would not bet on diet and exercise to "cure" prostate cancer.

 

We will recall that I also am an over-the-top athelete and have a super-healthy diet as well. I still went with RARP, EBRT and ADT for the whole 9 yards as I wish to live a long time yet.

 

I deeply appreciate the "watchful waiting" or "active surveillance" can give you the feeling that you have taken action against your cancer, but you are not actually doing that. You are doing what it says - watching it grow. If you have scientifically established that your cancer is a slow growing form, then this is appropriate. Otherwise...it has been nice knowing you.

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Stoniphi, I apologize for my insensitive remarks.

I have a tendency to be sarcastic when bouncing off walls, and this Forum is no place for that.

I am glad to hear that you have been doing well on your RARP > EBRT > ADT  journey. I have a feeling I will be following in your footsteps soon, and it is encouraging for me to hear that you are doing so well. How can I judge and condemn something I don't know much about? You are correct. I should not. I guess I am just plain afraid of ADT.

I have found this week some good presentations that patients run "risk" of serious side affects, and that "all" side effects is NOT a foregone conclusion.

Of course I cannot scientifically know if my cancer is slow growing or not. There is no test for this yet that I am aware of. Point taken.

I will keep all of you guys posted about what is going on.

Sorry again, Stoniphi. I really appreciate your help.

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Vasco, I will take your advice and run down the lead about Tsukiji. I have not considered Singapore as an option. Also, interesting.

Of course, I am covered with Japanese National Health insurance. In regard to them covering procedures overseas, I intend to research that more this week. Your remarks are very encouraging. Excellent idea: Getting the forms before leaving Japan. 

My first priority is trying to work something out with my doctor. However, I am seeking a second opinion this week. But, it is my hope that I work  something out with my doc and things  will go smoothly.

Thanks for the links. Your posts are always of great help to everyone.

VascodaGama's picture
VascodaGama
Posts: 2921
Joined: Nov 2010

Just to add a comment on the acceptance by the Japanese Health security in foreign countries assistance, I want to inform you that this coverage is not a sort of travelling insurance. It is used by the Japanese nationals or foreigner residents when dispatched to a country by their offices, or in imprevisible occasions. Therefore you could not apply in advance for an overseas exam but you could have the forms and say latter that while on a business trip you needed the exam.

Your Japanese doctor could send you to have the exam in another country covered by the National Health if such exam is not performed in Japan.

Surely our exchanged posts relates to a simple diagnosis. Latter you will continue with the sequential treatment this time based on the additional data. Your doctor may want to keep the same protocol. The second opinion will provide you peace of mind.

Best,

VG

 

 

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...the fear that surrounds and pervades this topic is very understandable. Our lives are on the line here. We are all afraid, but we cannot let our fear make our choice for us.

We gather the facts, then make the best decision(s) we can given what we know at the time.  We each then get to live with the results of our decision. Here, we share our thoughts, knowledge and experiences as best we each can.

 

I also tend to sarcasm and humor so these do not offend me. I attempt to be on my good behavior here as well, and believe that honesty and direct speech are important tools for all of us. Smile

 

 

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Vasco,

You are indeed correct. The National Cancer Center in Tokyo (Tsukiji) provides and manages the C11  Choline PET scan.

http://www.ncc.go.jp/en/index.html

I was able to find another hospital that can also provides the Choline  PET Scan.

http://www.ncc.go.jp/en/index.html

This solves at least one of my problems. I do not need to leave the country to seek advanced testing, and my National Health Insurance should cover it.

I thought  you  would like to know.

Thank you for your assistance.

VascodaGama's picture
VascodaGama
Posts: 2921
Joined: Nov 2010

Yank

Thanks for the link. This “Medical Excellence Japan” stuff is new to me. I am glad you found it because now you have in hand another “piece of the puzzle” to pursuit your next phase of the treatment. Surely you will have to wait for an increase of the PSA above 1.5 to assure a reliable test. You also got a subject other than HT to discuss with your doctor and with the physician you are meeting for the second opinion.

I may suggest you to try having that consultation (second opinion) at NCC probably directly with a medical oncologist or radiologist from Tsukiji that will be aware of the C11 exam and that can provide you with the information on HT protocols. Portuguese say it “kill two rabbits with one stroke” (kill two birds with one stone); Discussing about the exam and about the details of the hormonal treatment, including the difference between starting HT at PSA=0.5 or PSA=1.5.

We will be talking about that later if you wish, mean while you should research about HT protocols and the side effects.

(http://www.medical-excellence-japan.org/en/index.html)

I am glad to know that the doctor who did my RP in 2000 belongs to those assinting foreigners. He was at the time the chief surgeon at Toranomon while being a professor of urology. Later he also make part of the team treating the Emperor for his PCa case.
http://www.kameda.com/ja/general/medi_services/staffs/details_07_670.html

Best,

 

VG

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Rising PSA Chart

I have been off the board here for over a year now, thrashing around with a rising PSA, second opinions, and trying to locate a hospital with one of the more sensitive PSA tests.

My PSA history is illustrated in the drawing above.

My PSA continued to rise in small increments after RP and then six weeks of SRT after recurrence. (Actually, not a recurrence because my PSA never went to zero.) My surgeon wanted to put me on monotherapy with Casodex immediately after my PSA went to 0.3 after SRT. I located another good doctor who recommended more aggressive intermittent HT with Lupron and Casodex. Another doctor recommended that I do nothing, unless I developed symptoms (Another disciple of Dr. Patrick Walsh?).

And last, a urologist who looked like she still belonged in high school read me a laundry list of available treatments. This was not very creative and a waste of $300. I have gotten more good advice on this site for free. (Thankfully! Absolutely no sarcasm intended.)

Finally, after almost a year of PSA testing every two months or so, I finally went with my surgeon and the monotherapy with Casodex after my PSA hit 2.0. The effect was immediate and dramatic. I just hope that it keeps working for a while.

I am not sorry that I waited. Rather than go on HT a year ago, I wanted to wait and see just how agressive the bandit was. In the end, I just went with gut instinct and pulled the trigger at 2.0 with my original doctor.

Since the end of March 2016 my PSA has steadily dropped: 2.0, 0.3, 0.1 to < 0.1 (not detectable). I am going to one of the best, most progressive hospitals in the Tokyo area, but for some reason they won't go over to the more sensitive double-digit PSA test.

I should also mention that I am a great fan of Dr. Snuffy Meyers. I have been on his diet for almost two years now, and though I continue to work, my schedule is flexible enough to schedule regular exercise. I am also taking his recommended supplements: Vitamins D, E, Fish Oil, and Calcium.

I gave up my search for a hospital that would give me the more sensitive Choline Pet Scan. My PSA was so low there was only a very small chance they would find anything. And even if they found something, they were going to put me on HT anyway. So, what was the point?

Side effects from the Casodex (one 80 mg tablet daily) started almost immediately. Within 10 days I started to experience mild breast pain and slight enlargement. Luckily, neither effect has been too severe. Another stroke of luck: Not one hot flash. There is some fatigue, though, more like the third day of jet lag after a 13-hour flight across the Pacific that never goes away. Everyone reacts differently, and for now, I consider myself lucky. After 5 months, I do not really expect side effects to get any worse.

Thanks to everyone who contributed to this thread with comments and advice. I just wanted to let you all know how things are working out, and hopefully, this experience will be of some use to someone in a similar situation.

Not finished here yet, not by a long shot.

VascodaGama's picture
VascodaGama
Posts: 2921
Joined: Nov 2010

Yank

Thanks for being back to report advancements in your case. I like your "story" and relate it in many ways to traits in my case. Though, I wonder why after waiting for the increase of the PSA, you did not pursue the choice in having a PET image exam. And I ask; so, what was the point?

I do understand that you can at any time in the future try getting such an exam, probably even with better techniques now at the drawing boards, but you had the chance to locate the metastases while at a clean PSA level. I hope that the many reading your story do not take your case as the proper way. I think that one should continue one's treatment but coordinately.
Please note that I am not suggesting that you did wrong. I am stating that I believe that one should look for the ultimate way to deal against the bandit, and that includes all possibilities in eradicating it for good. To such extent one needs to locate it to kill it. In any case, all survivours should follow what they think it best to them.

You did not share details of your HT protocol. Can you tell what does your doctor recommend in regards to the length of the period on drugs? How long is he expecting you to be on 80 mg Casodex? Is he planning to have you treated intermittently (On/Off periods)?
Is there any plan to increase HT blockades with agonists and/or 5-Alfa Reductase Inhibitors?

Treatments involving a solo blockade with antiandrogens (like Casodex) are much linked with earlier refractory cases. The fact is that antiandrogens do not eliminate the testosterone (T) in circulations (cancer feeds on the stuff for survival) and instead it blocks the T feeding by gluing itself stuck to cells androgen receptors (AR) the mouth of the cancer. Without food being absorbed the cancer enters into indolence and stops growing. This is the good scenario. The bad is that cancer is prepared to survive (Darwin's principle of survival) and it mutates its AR to survive on tiny quantities of the stuff or even starts feeding on the antiandrogens (readily available with 80 mg daily intakes) because these drugs are made of the same biostructure as testosterone, proper for absorption by the cancer. In such scenario, when the PSA rises the patients may have began his refractory status and the antiandrogen should be stopped immediately (AAWR). I hope your urologist does know something about this behavior. Medical oncologists like Myers are the ones to follow.

You can read details in these links;
http://pcri.org/-aawr-the-anti-androgen-withdrawal-response/?rq=androgen%20refractory

http://www.hrpca.org/

Hormonal therapies are palliative and do not lead to cure. However, so far you have experienced fantastic results with the Casodex and that indicates that the type of PCa cells in you is hormone dependent. Such provides you with a series of reliable weapons to fight the bandit during many years ahead. You need to be vigilant and strike with a newer drug when needed.

Hormonal treatments affect bone health. Myers' recommended diets try to address that fact. I would recommend you to include a DEXA scan done annually (not typical in Japan). Also have the lipids checked timely together with heart health exams.  Urologists never discuss about these extras. You really will need help to pursue those preventions under the Japanese system (GP physician) or will have to do procure out of the system.

Best wishes for continuing good results.

Vgama

 

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

Vasco, thank you for your comments.

I gave up pursuit of the more sensitive PET scans in Tokyo because I was not confident that the tests would find anything with such low PSA numbers. 

I had a plan to go to the US this summer, and was planning to schedule a consult with Dr. Meyers in Virgina for a second opinion. However, I have to go back in the hospital soon for another operation to get a hernia repaired. This is my second repair job after Da Vinci surgery two years ago. In the meantime, I have changed my diet, following the recommendations in Dr. Meyers books, and gotten on a regular exercise program.

I am well aware that Casodex will probably stop working. My doctor (a urologist) wanted to at least get me on Casodex right away. The hospital does not have a strict protcol for intermittent therapy. They seem to favor Step Therapy where they step up to the next drug once one wears off. I had a consult with another doctor who runs a more aggressive HT program with combinations of drugs on an intermittent schedule. Actually, this other doctor and my present doctor know one another and are on good terms.  Once I get the operation done, and hopefully after I get a consult with Dr. Meyers, we can work out a sensible program.

My doctor is Japanese, of course, but he did his residence at Baylor University, Texas, and practiced another 5 years in the US. Believe me, I am being vigilant. I realize this sudden drop in my PSA due to the effect of Casodex is not a permanent fix. I am fairly confident that my doc is on top of things.

Thanks for your comments regarding testosterone level testing, DEXA scans, etc. Good information to have for questions during my next consultation in November.

Good luck to you, sir. And Best of health

Thank you again for your help.

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