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Just disgnosed 54 yrs old. thoughts on what to do

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Posted 10/30/2015 10:25 PM (GMT 0)
It appears you have about as mild as a case in be next to no Pca at all. There are millions of men walking around with undiagnosed Pca similar to yours, and most of these men will lead their lives unaffected by Pca, and may never even become aware of it. There's a lot of men on this site who wish their diagnosis was as relatively benign as yours.

Do your due diligence and consult with doctors and other knowledgeable people. If i were in your position I would likely be going with AS.



[quote="tmichael
I want to live. I have six grandchildren , with number seven due next month. I look forward to great grandchildren. I just don't want to over react and jump into something that is not necessary right now. Mentally,I can live with the fact I have cancer. When it needs to get addressed, I will man up and get it done.
Every indication is that AS is the way to go right now. We will see what the second opinion is and go from there.

Thank you for all the replies. All of your opinions are welcomed and respected.

Posted 10/31/2015 1:54 AM (GMT 0)
I vote for sticking your head in the sand.......If I knew now what I knew when I was dx. even at 42 I would have stuck my head in the sand and I had 6 core positive 2%-5% each....that was out of 56 cores...

After surgery I remained organ confined G6....wish I had left it in longer....
Posted 10/31/2015 11:45 AM (GMT 0)
Tmike,
The possible side effects of the radiation and removal are more scary then the cancer.

That is precisely how I felt which led me to do active surveillance for two years. Actually, it was called watchful waiting then, but that sounded like you weren't doing anything, so the name was changed to make it sound as though you were. At any rate, it is the only choice that guarantees zero side effects. My situation advanced to the point where AS was no longer ideal, so I chose what I thought gave me the best chance of a 'cure' without the bad SE's. That was 5 years ago, and my choice was LD Brachy. It was possibly the best choice of my life, and I'd make it again, but I would not also consider HD brachy as I have heard great things about that as well.
Best to you, Brother...and there is quality life after a PC diagnosis.
Posted 10/31/2015 11:47 AM (GMT 0)
Obviously I don't know how to correctly use bold face....sorry.
Posted 10/31/2015 1:50 PM (GMT 0)
Go have lots of sex. On the other side, things are different and will never be the same.
Posted 12/19/2016 6:47 PM (GMT 0)
Had my one year follow up biopsy and the cancer had grown. My PSA prior to the biopsy had spiked so I had an idea that something was up. Dr Ghazi and I went through all the options and I choose to have robotic surgery to remove the prostate. Scheduled for early January. Been reading up on recoveries now.
Posted 12/19/2016 6:54 PM (GMT 0)
Aw...that's too bad that you couldn't squeeze more out of your (what was it...about a year?) Active Surveillance.

PSA on an untreated man is generally a weak indicator of PC "growth" because there are several other very common causes of PSA going up (and/or down), but you said you have gotten new biopsy results which are now showing that it's time.

So, good for you; I wish you well on your continued journey.

What was your new biopsy result, and which prostate cancer specialist pathologist read your latest slides?
Posted 12/19/2016 10:22 PM (GMT 0)
Hey tmichael. Sorry you had to come here, but glad you found us.

We are about the same age at diagnosis with very similar stats. Please see my sig below. I opted for AS and more than 2 years later, I am still on AS. I get another blood test and check up next month and I'm really not even nervous about it any more.

Anyway... choosing AS was the best decision I ever made and if you take a close look at my stats you will understand why. So I am just jumping in to advocate for that course of action.

However, and this is very important, do get a second opinion on those slides.

And... relax, you are going to be fine, at least for a very, very long time. yeah
Posted 12/20/2016 12:21 AM (GMT 0)
tmichael

Please share what your new biopsy and psa results are! Chances are you still do not have to be in any rush to decide. If husband and I were in your position we would probably never have it treated. No one ever dies from a G6; it can't even escape the prostate. Did your doc let you know that you can suffer permanent ED from this? Please don't rush into this!
Posted 12/20/2016 1:06 AM (GMT 0)
Surgical Pathology Accession #: 16-SSP57594

FINAL DIAGNOSIS:
Summary of findings: Carcinoma is identified in specimens (C) and (E)

(A) Prostate, right apex, needle core biopsy:
- Benign prostatic tissue.

(B) Prostate, right mid, needle core biopsy:
- High-grade prostatic intraepithelial neoplasia.

(C) Prostate, right base, needle core biopsy:
- Prostatic adenocarcinoma, conventional/acinar type, involving
one (1) of three (3) cores (see comment).
- Gleason score: 3 + 3 = 6 (Grade Group 1).
- Tumor quantitation: 15% of the core.

(D) Prostate, left apex, needle core biopsy:
- Benign prostatic tissue.

(E) Prostate, left mid, needle core biopsy:
- Prostatic adenocarcinoma, conventional/acinar type, involving
one (1) of three (3) cores (see comment).
- Gleason score: 3 + 3 = 6 (Grade Group 1).
- Tumor quantitation: 20% of the core.

(F) Prostate, left base, needle core biopsy:
- Benign prostatic tissue.

HIM/CYR Slides
examined: 6

COMMENT:
This case has received departmental consultation on 11/21/2016.

Grade Groups range from 1 (most favorable) to 5 (least favorable).
Epstein JI, Zelefsky MJ, Sjoberg DD, et al. A contemporary prostate
cancer grading system: A validated alternative to Gleason score. Eur
Urol 69: 428-35, 2016.

INDICATIONS FOR PROCEDURE/CLINICAL HISTORY:
Elevated PSA

GROSS DEscriptION:
(A) Received in formalin labeled "Michael, Thomas" and "right apex"
further designated as "right apex x2" are three fragmented tan-white
tissue fragments ranging from 0.5 cm to 1.5 cm in length by 0.1 cm in
diameter. The specimen is entirely submitted in one tan cassette
labeled 16ssp57594A1.

Summary of sections: A1 - three pieces.

(B) Received in formalin labeled "" and "right mid"
further designated as "right mid x2" are two tan-white, cylindrical
tissue fragments measuring 1.3 cm and 1.8 cm in length by 0.1 cm in
diameter. The specimen is entirely submitte
d in one tan cassette
labeled 16ssp57594B1.

Summary of sections: B1 - two pieces.

(C) Received in formalin labeled and "right base"
further designated as "right base x3" are three fragmented, tan-white,
cylindrical tissue fragments ranging from 0.9 cm to 1.5 cm in length by
less than 0.1 cm in diameter. The specimen is entirely submitted in
one tan cassette labeled 16ssp57594C1.

Summary of sections: C1 - three pieces.

(D) Received in formalin labeled and "left apex"
further designated as "left apex x2" are two fragmented, tan-brown,
cylindrical tissue fragments measuring 1.0 cm and 1.5 cm in length by
less than 0.1 cm in diameter. The specimen is entirely submitted in one
tan cassette labeled 16ssp57594D1.

Summary of sections: D1 - two pieces.

(E) Received in formalin labeled and "left mid"
further designated as "left mid x2" per requisition, are three
tan-white, cylindrical tissue fragments ranging fro
m 0.5 cm to 1.0 cm
in length by 0.1 cm in diameter. The specimen is entirely submitted in
one tan cassette labeled 16ssp57594E1.

Summary of sections: E1 - three pieces.

(F) Received in formalin labeled and "left base"
further designated as "left base x3" are five tan-white, cylindrical
tissue fragments ranging from 0.4 cm to 1.5 cm in length by 0.1 cm in
diameter. The specimen is entirely submitted in one tan cassette
labeled 16ssp57594F1.

Summary of sections: F1 - five pieces.




Reported Date: Reviewing Pathologist's Electronic Signature:
11/21/2016 HIROSHI MIYAMOTO, M.D.,PHD
The above electronic signature indicates that all work on this case was
supervised and evaluated by the Pathologist. The diagnosis was
rendered by the reviewing Pathologist.
Posted 12/20/2016 1:43 AM (GMT 0)
Oh. So not much change.
Posted 12/20/2016 1:54 AM (GMT 0)
It would seem to me that AS is still a viable option

Mel
Posted 12/20/2016 2:08 AM (GMT 0)
tmichael...I don't want to upset the apple cart too much if you've already made up your mind, but reading that biopsy report I also don't see the compelling reason to jump off AS. I don't see it as much as the cancer is growing as it's just the luck of the draw. (When you stick a needle in your prostate 12 times, you'll get different results based on where you poke. It's sort of like drilling for oil. Or political polling.) But even then it shows a small amount of G6 cancer, which ain't all that bad.

That said, if after living with being on AS for a year you feel like this is only going to keep up and you're not comfortable going through this process every year, I completely understand your decision to treat. Everyone here will support you, but we also do want to give your opinion at the same time. (And, of course, no one here is a doctor.) Good luck to you no matter which way you go!
Posted 12/20/2016 2:48 AM (GMT 0)
tmichael, I agree with the three above members that those findings would not persuade me to leave AS.

However, I am almost 20 years older, and have a high risk tolerance, so I cannot put any judgement upon your choice. What's right for you is always right for you, and treatment is certainly a reasonable choice.

Just one suggestion...have you also consulted with a radiation oncologist? From what I read on these forums, surgeons are not always well informed on other treatment therapies. That may be one checklist item that you should complete. The recent findings of higher cure rates and fewer side effects for SBRT/Cyberknife may be worth your attention. Good luck.
Posted 12/20/2016 2:54 AM (GMT 0)
"Go have lots of sex. On the other side, things are different and will never be the same".....I like "Numbers" suggestion....makes sense to me ......the life changing thing is for real.....David
Posted 12/20/2016 1:49 PM (GMT 0)
I'm somewhat in disbelief that a surgeon in this day and age would recommend surgery on this report!

As stated above by some very knowledge folks (that have no financial stake in your treatment), keep going with the AS, keep having sex, and have a happy life knowing that you are just fine.
Posted 12/20/2016 2:19 PM (GMT 0)
I have got to admit that my opinion of having radical surgery for your diagnosis sounds like massive overkill. Why not at least get your slides re-read by Dr Epstein to make sure of what you have. If confirmed, at the very least you might want to consult with some RO's.re LDR Brachytherapy, HDR Brachytherapy or SBRT - any of which should cure you as well as surgery. But, also if confirmed I'm not sure why you would reject continuing on AS.

Jim
Posted 12/20/2016 2:33 PM (GMT 0)
I also think that surgery for this situation is ridiculous. Significant overtreatment. In this day of all the attention on the problems of over-treatment I would go so far as to call it malpractice. If you want to treat the cancer, then either mono-therapy High Dose Rate brachytherapy or SBRT/CyberKnife would be the way to go. Each is as good or better than surgery with far less side effects.

Before committing to surgery I urge you to seek out the specialists for each HDR and SBRT and get the information directly from them. Do not rely on your urologist-surgeon for information and advice regarding radiation treatments. He is not an expert on them. Go directly to the respective specialists.

Surgery is clearly too invasive for such a minor case like your. Like shooting a fly with a cannon. There will be a lot of collateral damage.
Posted 12/20/2016 3:09 PM (GMT 0)
tmichael,

I've seen that U of Rochester MC is involved in a research project which affects your case, and I was wondering if they've involved you in it, and what your thoughts are on it. The research is titled: Development and Evaluation of an Active Surveillance Decision Aid for Men with Low Grade Prostate Cancer.

As most folks who have been around here for a while are aware (but probably not many newcomers are aware), one of the key strategies for combatting Prostate Cancer overtreatment of low-risk men is "patient education." Prior research has validated the notion that the more low-risk men (like you) understand about the disease, the less apt they are to seek/request/demand an aggressive treatment like surgery.

An article in Urology Times a couple years ago put it this way, "The concept that a cancer may not need to be treated is certainly foreign to most patients. Dr. Kim and colleagues appropriately note that increased education at the time of diagnosis about active surveillance may help in the decision process...[and they developed] a ‘Decision counseling and shared decision making’ program that has helped men become better informed about treatment choices and reduced uncertainty in treatment decision making." The article then summarized that "The combined intervention resulted in more men choosing active surveillance."

So, URMC is leading one of (there are several; nice to have it in your backyard, though) the current research efforts on "Decision Aids," and in fact a full description can be found HERE HERE at the ClinicalTrial.gov website. Dr James Dolan, a researcher/internist from URMC is leading the study.

I realize that you've been seeing Dr Ghazi...and Dr Ghazi is definitely a gung-ho surgery guy (just read his Patient Care Bio). But the gung-ho surgery guys, especially on staff at a smallish hospital that has recently invested the $2M capital budget for a new DaVinci robot, might not be the best physician for a low-risk PC case (like you) to consult with.

Here's an idea: contact Dr Dolan's office and ask for a reference/referral to a local urologist who has lots of AS cases...I bet he knows who to send you to. Just an idea.


Anyhow, did they invite you to participate in the URMC "Decision Aid" study? What were your thoughts on it?
Posted 12/20/2016 3:18 PM (GMT 0)
BTW, the inclusion/exclusion criteria for the above mentioned "Decision Aid" clinical trial/study:

    Inclusion Criteria:

  • Age: 40 to 85 years
  • Sex: male
  • Race/ethnicity: no restrictions
  • Diagnosis: Patients will be eligible for the study if they have not yet decided on a management plan and present with either:
    >>>localized, low grade prostate cancer, defined as Gleason score ≤ 6, T1-T2a stage cancers, and PSA values < 10 ng/ml, OR
    >>>Intermediate risk prostate cancer, defined as Gleason score = 7, T2b-T2c stage cancers (these tumors involve more of the prostate but do not extend beyond the prostatic capsule), or PSA 10-20 ng/ml
  • Willing to participate and able to give informed consent
  • Able to adequately see the study intervention which is an interactive decision dashboard & complete study-related questionnaires
  • Able to understand English language adequately to use the decision dashboard and complete study-related questionnaires



    Exclusion Criteria:

  • Unable to complete study-related tasks due to cognitive deficits or English non-fluency
  • Unwilling to participate.
  • Deemed clinically unsuitable for active surveillance as a prostate cancer management option




I don't know all of your details, tmichael, but from what you have communicated so far it seems that you are easily within the pool of men they are looking to recruit...
Posted 12/20/2016 3:56 PM (GMT 0)
tmichael,

The paradox of prostate cancer is that the cancer that is easily cured does need to be cured as it will not harm you. That is the low grade G6 such that you have. It may continue to grow a bit, but so long as it is G6 it will not spread. AS provides you with the time to determine whether and when you need to treat it. If some higher grade cancer develops, then it can be easily dealt with as you will catch it at the earliest possible time through active surveillance.

It is often said that the low risk cancers are over-treated and the high risk cancers are under-treated. Certainly in your case, surgery is over-treatment. In low risk situations all forms of treatment will be equal in curing the cancer. Thus it is vital for your quality of life for a long time to choose the treatment that presents the least significant side effects. Surgery, by its very nature, presents the highest risk and most significant side effects.

This entire debate over the past several years about changing the way we screen and treat is aimed squarely at you. It is all about ending the over-treatment of low risk prostate cancer. The inappropriate use of surgery has meant that thousands of men are spending their life with very significant side effects from treating a cancer that either did not need to be treated at all, or could have been effectively treated with a much less invasive method.
Posted 12/20/2016 6:26 PM (GMT 0)
It should also be pointed out that many experts feel that G3+3 should not even be classified as PC. It will not spread. But I think AS makes perfect sense, since one never knows if there are some G4's lurking somewhere.

Mel
Posted 12/20/2016 7:36 PM (GMT 0)
tmichael, I had a similar biospy in 2007 to what you have. I had <5% cancer in 2 of 12 samples with G6 and a psa of 5.6. Prior to my biopsy , I had watched my psa slowly rise from 2.5 to 5.6 over 3 years , so I guess you could say I was sort of in an unofficial AS state .

After my biopsy and my diagnosis of PC, I pondered all the treatments like seeds, proton radiation, surgery, and continued AS. But there was one big thing that pushed me towards surgery more then anything else , and this is one thing that nobody here has seemed to mention as of yet, and that is ...... In an article that I read doinf my research, I found a study said that in about 40% of the cases diagnosed during biopsy, the percentage of cancer that was found in the prostate during the biopsy is usually under rated to what is "actually" found when the pathology is done after surgery. In other words, you could have more cancer and a higher grade lurking in your prostate that you don't know about.

This really started me to think if I really wanted to take a chance on waiting. After weeks of trying to talk myself out of surgery, I just could not live with the fact that I had a live cancer in me still growing, so I decided to have it out.

Well, guess what happened? When the pathology came in after my surgery, it siad I had 30% cancer found and not 5% like my biospy said. Lucjy for me it was stil a G6. Also one sample was found within 3 mm of escaping the prostate. The surgeon told me that if I had waited another year, I would probably would have had a positive margin and a whole different outlook for life.

A lot of people here are saying that after surgery, your sex life changes radically. I think that all depends on the surgeon you get. I think if you research and you get a surgeon who has done thousands of these surgeries, you will have a much better chance at having no problems. In my case, I was getting rock solid erections the day after the catheter was removed, and to this day after 9 years, I can still get rock solid erections without viagra.

If I had it to do over again, I would probably do the same.
Posted 12/20/2016 8:05 PM (GMT 0)
I just thought you might want to read this before deciding (the issues discussed really apply at any age):

/pcnrv.blogspot.com/2016/08/can-man-be-too-young-for-active.html
Posted 12/20/2016 8:20 PM (GMT 0)
NY:

There are many advantages of surgery, including finding out the exact pathology and getting a better handle of what you are dealing with. I totally understand the "get it out I don't want this cancer in me." I also understand the notion that so many biopsies underestimate the true situation.

These were a few of the reasons that I also elected surgery (there were actually many more reasons).

BUT, I was first dx. with a G 4+3 at U. of Mich. Ford Hospital then looked at the sample and downgraded it to G3+4. Epstein had given a second opinion of G4+3. Ultimately, after surgery, it was indeed a G4+3.

In my case, I did not have the option of AS. I also have no regrets over my tx. decision. But with the OP's stats., it still seems to me that any tx. would be over treatment at his stage.

But one has to know oneself and decide what you can/cannot live with. Fortunately, it appears T-Mike is going to take his time and investigate the situation...I hope.

Mel
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