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Posted 12/29/2013 12:11 AM (GMT 0)
Hello everyone,

We're new to this site.  Hope everyone had a good Christmas.

After a high PSA test, my husband was diagnosed with PC almost 10 years ago, before we met.  He was scared and went along with the doctor's recommendation for a biopsy, Lupron & cadex.  He is sorry he did it that way.  If he had it to do over, he would have just waited & watched and cleaned up his lifestyle.  This would be my recommendation for anyone that is newly diagnosed, too.

Now, almost 10 year later, he/we actually have a good quality of life.  We're active, work on the house and yard, travel and still share great intimacies a couple times a week.  Sure, we need a little Viagra but most do at almost 60, even without PC.  You wouldn't know he has it and sometimes he wants to believe it is gone but I don't believe it is.

We have our regular visits with his GP, urologist, oncologist and soon, endocrinologist.  We like to keep up on the blood-tests, psa #'s, etc. and talk with the doctors to see if anything is new.

We do a lot of research on our own and most of the doctors are quite surprised at our knowledge and involvement with out own health.  Some like it and some don't because we don't just go along with their drug/surgery suggestions.

My reason for writing to you is, tell me my future.  Tell me what I/we are in-store for and how to prepare for it.

I look forward to hearing from everyone whether you agree or not.

Thank you all and best wishes for your good heath in 2014.

Posted 12/29/2013 12:17 AM (GMT 0)
I think more information is needed for anyone to respond to your post. What was the result of the biopsy? What has been his PSA numbers?

 

Posted 12/29/2013 12:55 AM (GMT 0)
the trouble with that is you only hear from the watch and wait crowd that was
successful. the unlucky ones aren't here to say they wish they didn't watch and wait
Posted 12/29/2013 2:25 AM (GMT 0)
Your posting is kind of moving actually. Having gone the surgical route and now being cured of cancer that never would have killed me anyway and using trimix the rest of my life I wish I'd never had the psa test. Of course if I were a Gleason 7, 8, or 9 maybe I'd feel better about it. Even then I'm not sure if doing HDT actually increases longevity. That seems to be contoversial too.

I'm not sure if anyone can really answer your question because the course of prostate cancer is so unpredictable. Your husband could go on for years the way he is. How many years but based upon his Gleason score and staging there must be normative tables that could predict his lifespan. Ultimately I suppose if your husband does pass with prostate cancer it would be due to metastasis to a vital organ like the liver or brain with shutting down of functioning of that organ.


I don't know what I would do, it's such a personal choice to try treatment or let nature take its course. I do know that with hospice care nobody has to pass in severe pain, there are plenty of medicines to control that. You just have to get the right oncologist to control cancer pain. Even in my town of 400,000 there are plenty of excellent MDS and nurses.
Posted 12/29/2013 3:04 AM (GMT 0)
Welcome, myeverything,

What was he diagnosed with: Gleason? Stage? PSA? Metastases? Urinary symptoms? Enlarged prostate?

How long did he take Lupron & Casodex, or is he still taking them? I assume he is off them now because he seems to desire sex.

And what is happening now? Is his PSA rising? Has he had another biopsy? Is he considering radical treatment - prostatectomy or radiation?

- Allen
Posted 12/29/2013 3:34 AM (GMT 0)
Thank you for your responses.  I'll try to answer as much as I can.

Again, we're doing our own research, he's already had a few month on the Lupron & Casodex and we know we do not want the current Treatments.  I'm trying to get an idea of how long we're going to be able to live at home and manage our lives from those that have had similar experiences. 

We do not want to end up in a facility.  Quality-of-life is important and Hospice is on our list. For those that have gone this route, at what point do we lose control of our lives? 

As I said, we're 'appearing' well.  He is 300+lbs., does have a CPAP for sleep apnea,  has a bad leg so we don't walk as much a we'ld like but we do walk.

I am concerned that he's pretty fatiqued by early afternoon.  Between the 2 of us, we have backgrounds in nutrition, chiropractic and naturopathic, etc., so we are aware of what we're eating and sometimes, what we shouldn't be eating.

I vaguely recall 7's & 9's with the Gleason and a 2nd opinion confirmed the PC.  His recent blood test showed his PSA above 100.  It has slowly climbed since he ended the Lupron & Cadex, about 3-4 years ago.

I believe the PSA has been mis-used as a diagnostic test and we are seeing more and more that the Medical community  is leaning that way.  However, I understand it's purpose as a bio-marker once PC has been diagnosed.  I have heard of huge PSA fluctuations but have not found any death due to PSA #'s.

'success' is a relative word.  PubMed.com is a great resource of clinical trials. (I hope I can put that up but feel free to remove it) Research is subjective but there's enough to show that PC commonly returns after 3 years and, yes, it depends on so many factors, but, there are large enough numbers to show that many of the current methods are not guaranteed.

We've given this so much thought and that's why we know what we've got now, what we're working with, and, as other's have said:  pain management, Hospice.

Yes, there's a possibility of matastasis and the failing, due to that. 

I am unfamiliar with the "down-hill", living in the home, with the changes (urinary, etc.).  I am hoping for information, guidance, experience that will help me be prepared.

Thank you.

 

Posted 12/29/2013 4:06 AM (GMT 0)
So, from what you've said, he is:

  • Gleason 9
  • He was on Lupron+Casodex 3-4 yrs ago, but did not stay on them
  • He got off it because he didn't like its effects, but he never became castration-resistant
  • His PSA has climbed to over 100
  • no diagnosis of metastasis (and no bone scans done?)


I also surmise that he doesn't want any more hormone therapy or any other treatment other than palliative care.

I would suggest he get a bone scan. Especially with his weight, spinal compression fractures can occur at sites of bone mets. This can impair his ability to walk, so it is a good idea to detect them and treat them with targeted radiation (SBRT or Xofigo) early. Xgeva can be a big help, if he does not have known dental problems.

If mets do start to cause pain, he may find that hormone therapy may provide relief. It won't be curative, but he might want to revisit his decision then.

Good luck!
Posted 12/29/2013 4:59 AM (GMT 0)
You questions are practically impossible to answer. Sounds like you and your husband have already chosen of path that is satisfactory to both of you.

As others have suggested, more detailed info is needed to fully understand his current status with his prostate cancer journey.

If you are asking "how much longer?", no way to remotely answer that, too many variables for starters.

As a general rule, assuming he's a Gleason 7 or higher, left untreated, mets will eventually develop. They typically would go to bones first, but possible, depending on the location, could invade vital organs.

And yes, ultimately, hospice is the last step with prostate cancer that either is not being controlled, or chosen not to be controlled. Pain is most men's greatest fear, but we live in an age where pain control is a science in itself. It would not be pleasant, regardless of the level of pain meds administered.

I wish you both the best, and we are here if you need us for any information or support, but you are asking things that are difficult to answer, both from the technical level, and especially from the personal level.

David in SC
Posted 12/29/2013 5:50 AM (GMT 0)
I would say the best thing he should do at this point is to take care of his weight problem, even the gastro thing that makes your stomach smaller. I actually think HT with that weight will keep him from dying from PCA, but fro wrong reason. His heart. This to me is top priority. If he just wants to live the way he always has, he isn't even doing that now. Things will change with age, as you both have already seen, whether he has PCA or not. With freewill you have the ability to do whatever you want. I would suggest you take actions to improve your health, from all things that hinder it and reap the benefits from that as you age rather than attempting to continue reaping benefits from a crop that, by nature, has and will continue change. Human beings are very adaptable creatures. We are made that way so we can enjoy life, regardless of circumstances. thats my nickel.
Posted 1/24/2014 2:03 AM (GMT 0)
A good New Year to all,

Thank you for all of your comments and suggestions.  I've been reading but haven't had a chance to ask any more questions.

Misc.added info:  He did get a bone scan (radioactive dye) last year and it didn't show any definite mets. 

We agree about the weight loss but it is a terrible struggle because of the sugar cravings.  We're working on it.

mspt98, I see you are taking TRT.  I would love to hear  whatever you would like to share about that.  I think every man around 50 should start the TRT but we are hesitant to try it now because of the popular medical concern "adding gas to the fire".  Do you notice any difference?

Sorry to be so short, I am on a timed computer.  Will follow up soon.

thanks to all and best wishes.

El                                                                              

Posted 2/9/2014 7:55 PM (GMT 0)
I have the same question of what will be my future because I did nothing for my prostate tumor (confirmed by a multiparametric RMI) but serious change in my lifestyle. Eventually I will get metastasis so I am preparing for the worst (I am 69)
Vaccines are a good hope although terribly expensive, not so for the future brazilian one but still a hope: http://www.fkbiotec.com.br/index.php?lang=en&pagina=inovacao&op=3
For now a lot of deep homework and it takes a lot of times to go through a lot of contradicting studies and get a knowledge that is possibly as widespread as a cancer.
Concerning TRT there are different studies suggesting tha it is not fuel but water:
http://www.lef.org/magazine/mag2008/dec2008_Destroying-the-Myth-about-Testosterone-Replacement-Prostate-Cancer_01.htm
Not infrequently (as to reassure myself) I look at a guy, that I feel is honest, who has had an uncommon treatment that, if not useful, is harmless:
http://phkillscancer.com/
Also a speech is available:
https://www.youtube.com/watch?v=Yl8Y8I_TsjI
There is no miracle medicine, no treatment has been proved to substantially extend survival rate, to the point that doing nothing is an option.
Abrazos
Posted 2/9/2014 9:47 PM (GMT 0)

Abrazos said...
Eventually I will get metastasis so I am preparing for the worst (I am 69)

Was your diagnosis also high risk?

- Allen
Posted 2/10/2014 4:15 AM (GMT 0)
Hello everyone,

We usually go to see "a" doctor  urology, oncology, GP, about every 3 months.  We get the weight, BP, blood tests and chat with the doctors to see if they have discovered anything new and/or to discuss with them the many new questions we might have from our own research.  Sometimes we have questions that they can't answer and know about drugs and new methods that they haven't heard of.

This last Friday, we went to an oncology appt. (we had just been about 3 weeks ago and didn't know why they wanted us back so soon) and I thought I would report.  We are going to a large UCLA hospital outside of Los Angeles and there were about 100+ people, all with different cancers, scheduled at the same time, a cattle-call.  It is honestly a horrible way to manage patients and,  I believe, just a small peek at what Obamacare (or any socialized medicine) provides.

We met with a new Doctor, not the one we had met before and were hoping to create a relationship with, who was filling in.  BP and weight (too much) were the same, PSA is about 167 and a blood-draw.  If you've read my reports before, we pretty much see the doctors to share information and for the diagnostics.  This doctor, like most of the others, was pretty surprised to see my DH alive and still in control having been diagnosed 10 years ago with a Gleason of 7 or 9 (can't remember).

My DH likes to periodically take a routine of Ketaconazole.  He wants to take it now to lower his PSA.  It is a very old anti-fungal with a long, safe history though you need to watch your liver enzymes.

There is a school-of-thought that fungus can mimic cancer.  There are clinical trials that shows cancer seems to diminish after a series of anti-fungals.  So, was it really a cancer or a fungus.  But, we believe if you take the anti-fungal and there are still cancer cells, it must be cancer and to treat it as such.

Ketaconazole also lowers testosterone, usually lowering PSA and has been recommended when the cancer is resistant to hormone therapy.

We rotate a lot of different vitamin supplements.  My DH takes 1 mg. of Beta-sitasterol (a plant estrogen that reducesevery night and this has made a major reduction in how many times he was getting up to go to the bathroom.  Before, it could have been 4+ times, now about once around 4 a.m.  Be aware, you must also take vite E and lycopene with it.

Cimarron, I am glad to read  your post.  I have good feelings that our chances are just as good, if not better, than going along with the doctors.  I hope to read more about your concerns and what solutions you find and plans you will make. 

Re: the article at LEF, dated 2008:  The context is TRT for men NOT YET diagnosed with PC.  And, I totally agree with this theory recommending TRT for all men by the time they're 50.  I do not believe, and there is no studies that show, TRT 'causes' cancer.........unless, like Suzanne Summers, you take HRT at levels for a teenager.  Then you are asking for trouble.

But, if you already have cancer, the hormonal game changes, you're not working with normal cells, and I'm just afraid enough to not try it.  Not until we feel safe.

mspt98, that is why I am hoping to hear from you again since you are taking TRT.  Do you notice a difference?  How are you doing with it?  We believe it's responsible for feeling better, stronger.  Would you recommend it?

Thank you all and good wishes.

El

Posted 2/10/2014 8:32 AM (GMT 0)
Myeverything,

I am glad to hear his Gleason score was 7 rather than 9. That can make a big difference in how long he can reasonably expect to be progression-free without treatment.

I don't know why the doctor was surprised -- it's typically a very slow killer when diagnosed as a Gleason 7, and often something else will cause death sooner. In the ERSPC study, 96% of men diagnosed as intermediate risk and electing to refrain from initial radical treatment, survived with their prostate cancer for ten years. In the PIVOT study, after 12 years of observation only, only 15% of Gleason≥7 men had died of prostate cancer.

You are correct that ketoconazole is an antifungal, but that is not why it works for PC. If his biopsy had a Gleason score, he has cancer, not a fungus. Keto inhibits the enzymes responsible for the adrenal conversion of androgens. For that reason, it was used as second line hormonal therapy after the "failure" of hormone therapies like Lupron that blocked the creation of androgens by the testes. (I put "failure" in quotes, because Lupron doesn't really fail, the cancer becomes resistant to the inhibition of androgens.) Keto has now been largely supplanted by Zytiga (abiraterone), which accomplishes the same thing only better and with fewer side effects.

Another second line therapy is estrogen, now given as patches that don't cause so much blood clots as pills or shots did. Vitamin E has been proven to cause prostate cancer; he might be better off with gamma-tocotrienol.


- Allen

Post Edited (Tall Allen) : 2/10/2014 3:29:40 AM (GMT-7)

Posted 2/11/2014 6:44 PM (GMT 0)
Allen
Onset of symptoms 1 year.
So far the only "diagnosis" are:
High PCA3 105, (cut off 30);
Multiparametric RMI: hardly malignant 10 mm nodule apparently still confined in the capsule;
Color Doppler ecografy: not abnormal vascularization;
Bioscanner Trimprob: not good;
Free PSA 0.4 slowly sinking. Total PSA 2 slowly rising.
Next check prostate elastografy;
No biopsy.
No drugs, no α5 blockers, no hormones apart melatonin and natural remedies.

Fabio
Posted 2/11/2014 6:54 PM (GMT 0)

Tall Allen said...
Myeverything,

I am glad to hear his Gleason score was 7 rather than 9.


Did I miss something? I can't find where she said 7. I see 7 and 9 in one post and 7 or 9 in another.
Posted 2/11/2014 7:18 PM (GMT 0)
My interpretation of this post was that doing nothing and doing something nets the same result, in the OP's mind, but the OP wants to know how long someone with PCa is going to live, in general, once diagnosed.

I think it's a very valid question to ask how long you'll live with a PCa diagnosis especially if you do nothing about it. As has been noted several times, that is an impossible question to answer.

This question has rolled around in my head plenty since my surgery especially with my downgrade to G6. Would no treatment really offer me any better life expectancy than surgery? Impossible for me to know but I wish I'd had the chance to know prior to my surgery I was a 6 than opposed to after when it was too late and the decision was wrested from my hands.

Post Edited (Inchoation) : 2/11/2014 12:22:05 PM (GMT-7)

Posted 2/11/2014 7:45 PM (GMT 0)
PDA, I'm scratching my head. At first she said "I vaguely recall 7's & 9's with the Gleason." So if there were both 7s and 9s, he is of course a GS9. But then she said, "Gleason of 7 or 9 (can't remember)" which could make him GS7 or GS9 but not both. Perhaps incorrectly, I took this as a modification of her original statement. I maintain scrupulous medical records, but I suppose these things are not as important to some people. Either way, 10 year survival after the initial diagnosis in the PSA screening era is very high.
Posted 2/11/2014 7:50 PM (GMT 0)
Fabio,

Why "no biopsy"? Don't you want to know what you're dealing with? Those biochemical tests and imaging studies are not definitive. Only a biopsy can confirm that.

- Allen
Posted 2/11/2014 9:31 PM (GMT 0)
Having gone the surgical route and now being cured of cancer that never would have killed me anyway and using trimix the rest of my life I wish I'd never had the psa test. Of course if I were a Gleason 7, 8, or 9 maybe I'd feel better about it.

so in others word you wanted to know before you didn't want to to know and if you knew then what you know now you wouldn't want to know? I think everyone wants to have it both ways at times.

ed
Posted 2/12/2014 12:13 AM (GMT 0)
Fungus mimics cancer?
Posted 2/12/2014 4:38 AM (GMT 0)
WOW!
Thanks Ed and to a lesser extent Inchoation. I could never understand why some members were against PSA screening, and I now believe I understand why. Each of us tends to base his PCa journey starting with a PSA test or lack of one; I am no exception!
I regret that you and many others were "over treated" starting with a PSA test, and Iam also sorry that many others were "undertreated" by being denied the test until symptoms appeared and the diagnosis was at a later stage. Thanks for being forthright; you know my beliefs.
Regarding the op, at 300# he is much more liable to die of a heart attack, stroke, or some other ailment than PCa.
Bill idea
Posted 2/12/2014 6:26 PM (GMT 0)
Allen
I agree with you but I prefer to monitor the thing. If it shows tendency to grow I probably would accept a perineal template biopsy, only one stab into the target.
I am also curious to see how changes in lifestyle can give some sort of benefits (+/- growth).

Fabio
Posted 2/12/2014 7:07 PM (GMT 0)
This is an amazing thread. If the question could be answered definitively it would be wonderful news for all PCa victims. To think that there is possibly no difference in PCa specific survival no matter what treatment (or or no treatment) was selected would be revolutionary.
However that's fiction. There have been any number of studies which show that there ARE usually different survival rates for different grades/stages of PCa based on treatments chosen. I say "usually" because some guys are outside the norm and die form PCa earlier or later than others or do, or do not die from PCa at all.
So treatment suggestions are based on survival rates of thousands of guys who went before us.

If one chooses to avoid all treatment, it's a bit like Russian roulette. At the same time, electing treatments with awful side effects can be just as bad. It's a matter of picking one's poison. The worst of all worlds are guys who chose radical primary treatment and are still not cancer free. Double jeopardy!!

I will say that anyone who chose to have radical treatment and is cancer free but is second guessing whether they did the right thing should just thank their lucky stars that PCa is not in their future. That's like cursing yourself for selling a stock too early after making a nice gain. Come on!! For every guy like that there's one who wishes he had acted sooner. I'm one of those.
Bob
__________________________________________________________________________
DOB January 1944
1981: prostatitis
2000-2013 BPH treated with finasteride & tamsulosin; low T treated with androgel
PSA History:
Pre 2009 0.4-.6
11/2011 2.2
8/2012 2.7
2/2103 5.5
4/2013 6.1
5/2013 6.6
11/2013 0.1
1/2014 0.2

6/2013 Bx:PCa Gleason 4+4=8 (Bostwick), 4+5= 9(Johns Hopkins), 2/6 cores, 10%, 40%, DRE neg. (Stage PT1c)
7/2013 bone scan and pelvic MRI negative
9/7/13 open RRP, Johns Hopkins, Ted Schaeffer MD PhD.
9/9/13 Pathology: 33G, both nerves spared, SVI, EPE and 4mm pos. margin at base (Gl7), Stage PT3bN0M0)
9/20/13 Foley and staples removed
Continence: one pad per day for 13 weeks, now none. ED pre and post op.
Watchful waiting until next PSA May 1, 2014
Posted 2/24/2014 4:45 AM (GMT 0)
"numb chin syndrome".  Everything has been going just fine when he starts to notice his chin feels numb, about a week.  numb as if it was coming out of anestesia.  so, I searched and, can't believe what I found.......almost all of the NCS articles, including PUBMED/clinical trials, all say it shouldn't be ignored and is usually a symptom related to cancer, all types of cancer: breast, lymphoma, etc.

I will tell him in the morning or it will ruin his sleep.  There's no need to do that, we'll talk in the morning and make a plan, then.

Boy, it's scary isn't it.  This is the stuff we're not prepared for.  I'm sure we will be presented with all of those medical options we don't like, radioactive dye tests.  More than anything, we want to plan our lifestyle to able to take care of him at home for as long as possible.

Tell me how you've adjusted to the changes in your life.  What can you handle on your own and where would you like more help from your mate. 

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