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MY DIAGNOSIS DELIVERED

mimbyus's picture
mimbyus
Posts: 18
Joined: Mar 2013

Hello gentlemen:

Well I've just got back from my appointment with the urologist today, and I have my diagnosis.

It's exactly what I believed it would be (for what that's worth!). A Gleason 7 contained cancer, operable. I am attaching a scan of my pathology report for you to see[below].

I've changed my thinking - tentatively - about "REFUSING ALL TREATMENT," based on information the doc has provided me regarding possibliby of aggravation of my pre-existing IBS. He believes he can do a prostatectomy without touching my bowels, therefore leaving my GI tract alone, and assuaging my fears.

As I've already said, I reserve considerable doubts about the things doctors promise, in light of what they often deliver ( the stars vs. the moon metaphor). And I will continue to demand complete control over MY body.

In the weeks before my next exam with the doc ( for a cystocopy ), I'll be studying up, looking for further advice on my prognosis. Your posts will carry much weight in my deliberations, so please DO jump in, your observations will mean a lot to me!

MY PATHOLOGY REPORT GLEASON: 7

I was glad to see  that this site allows for uploaded images. I just hope the document is legible for you. If it's not clear, please let me know, I'll do some more Photoshop magic on it!

Thanks, all.

WT.

 

mimbyus's picture
mimbyus
Posts: 18
Joined: Mar 2013

Since posting "MY DIAGNOSIS DELIVERED" I have come across some "risk" information in direct contradiction to the words of my urologist ( the "moon"...not the promised "stars"! ) when he proposes I undergo a "retropubic" or "suprapubic" prostectomy. The doc emphatically stated that such procedure would NOT aggravate my IBS!

I quote from the website of the Yale School of MedecineRadical Prostatectomy :"One risk associated with the retropubic approach is the potential for rectal injury, causing fecal incontinence or urgency."

 Retropubic approach to prostatectomySomeone is telling me a tale here! My fears of a life devastated by out-of-control IBS after PCa treatment return in FULL FORCE  again!

Oh, gawd....WHO do I believe? Where do I go?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

There is absolutely no treatment this is 100% risk free.  I'm sure you realize this.  You have to consider the odds and the skill of the doctors but nothing is going to be without risk.  

mimbyus's picture
mimbyus
Posts: 18
Joined: Mar 2013

Hi K., again,

 

Yes, your point is well-taken. 

There is an additional over-powering factor, however, that  I have to deal with in making my choices re: treatment/no treatment; what treatment? etc. etc. This other factor comes into play ON TOP of my already-addressed IBS condition, which already makes all choices look bad.

That additional factor is that for 21 years I've been living as a survivor of a brain injury ( BI ). Specifically, i survived a ruptured brain aneurysm. I underwent open-skull surgery to "clip" the bloody little ***** that wrecked my life! I blog on that here: NothingYouCanSee. Since that event, I've been living in a psychic realm that only other BI survivors can possibly understand. I've felt like the Living Dead.

So now comes PCa. Bad quality of life just got Worse! 

Truth-be-told, the few odd comments i've received in Replies to my posts here advising me of our human mortality, "some live", "some die", "pick your best option" etc. just roll off my back as fatuous. If you really want to know about living and dying, come see me, or any other BI survivor. Most of us don't survive. Of the approx. 25% of BI victioms who DO survive to make it to the surgeon's table, 25% will die on the table. Of the  75% of surgery survivors, 30% will take their own lives within three years post-op. It's that bad. nobody better tell me about life or death. I am both, walking on two feet. Have been for 21 years.

Open-skull surgery is an awful jam: for every "fix" the surgeons do inside the brain, any number of neurons get snipped and lost forever. Brain tissue is the only tissue in the human body that can not heal. You cut your finger...slap on a band-aid, wait a few days, your body does it's bit, all healed just like new! Not so in the brain. A snipped neuron is dead and gone forever.

So....of the intracacies of PCa treatment, I factor in the much-reduced quality of life I begin this journey with. Is it worth it AT ALL? 

One logical choice might well be self-extinction.

W.T.Yell

jwoodie
Posts: 21
Joined: Feb 2013

Hey WT,

I am in a similar situation to yours (without the IBS).  Just started homone (Lupron) and am scheduled to start 3D & IMRT therapy in 2 months.  Surgery has been ruled out because of my previous TURP biopsy.  Like you, my biggest concern is bowel/rectum side effects.  Unfortunately (for me), they seem to be more common with radiation than surgery, which tends to have more urinary/incontinence issues. 

 

I am planning on having another PSA test (last was 60) before radiation starts.  If it is still high, I may skip the radiation.

 

Good luck,

 

JB

mimbyus's picture
mimbyus
Posts: 18
Joined: Mar 2013

Hi JB,

 

Ya, i see the similar worry we share. Frickin' AWFUL, isn't it?

I've read that radiation treatment is more likely to cause Lower GI incontinence too. 

Here's the thing that eats me about my doc's attitude toward worries about incontinence. At first meeting with my urologist, I raised my IBS history with him, with what I thought was dramatic emphasis. It apparently just rolled off his back, because he had no comment on that particular concern. At the end of our consult I again raised the topic, hoping to grab his attention this time, using more poweful language. THIS time the doc dismissed the topic with a flip comment: " So, we'll likely keep you away from radiation then." I still didn't feel well-understood!

I am terrified that ANY of the existing treatments will cause a nasty hit at my bowels. It's already taken me a lifetime to learn how to manage and tame my condition, and it's been by much trial and error. 

So, the doc promises to do a prostatectomy from the belly, rather than lower down. What guarantee is there that one tiny slip  of the knife won't nick my GI Tract, and then I'll be Off to the Races again?

JB, I'm here to tell you, in the strongest possible way, that you DO NOT WANT any chance of bowel incontinency as an after-effect of whatever treatment you determine to undergo. Trust me. You really don't.

It can be so bad....I'm considering NO TREATMENT, rather than fighting another war with my Lower GI TRact. Not at my age. I'm 58, I'm worn down by an earlier injury, and I've had an exceptional life already - had more, seen more, won more...than most people. If PCa wants to take me out at 60-something, FINE....better than living long in Depends. 

You know what I mean?

Samsungtech1
Posts: 350
Joined: Jan 2011

Sometimes things happen in your life that throws it completely out of kilter.  No fighting this.  You said you had studied everything.  Well you need to make a choice.  The only way to do it is research.  I did nostudy your results as they were not clear on IPad.  You need to ask relevant questions to get good answers.  I could not read how many positive cores yOu had which would reallydetermine treatment.  They say about 264000 men will be diagnosed every year.  Everyone is afraid.  Some of us will die, some will live, maybe not as long, but due to these treatments it extends our life.

Death is coming to all of us.  Just a matter of time and choices.

 

Mike

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

I have read thru your posts about treatment and seen the above Path report. A cancer diag stops us all and will change your life. It stopped and changed mine in a big way. The one item I had to face was the fact that I now am fighting a life threating illiness. The doctors for the most part donot overload you with a lot of information and this is due to the fact that they donot want to scare you off from treatment. 

Every treatment method will have side effects and these vary from person to person. I had the robotic surgery and I also have the side effects from this surgery.

The choice that you are trying to make is the hardest one of your life time. It was for me beyond a doubt. There is a lot of confusion, fear, anger and everything else.

Treatment is important here, without this cancer will make your life not so good.

You really need to study all of the treatment methods and research.

The prostate sits in the lower part of your body and some times it attaches to the lower bowl. The doctor has to very carefully remove this, but can at times end up cutting thru the bowl. When this happens your bowl activity becomes upset. Now with IBS, before surgery the doctor will require a bowl prep and it cleans you out this might cause you additional problems.

Hang in there you have joined a club that no man wants to be in

Kurt

hopeful and opt...
Posts: 1310
Joined: Apr 2009

I am sorry for your diagnosis.

It is important to know where you stand. You do not want to be under or over treated.

First determining the Gleason scores are subjective....there is is a difference between Pathologists. You want to have a second opinion on your slides from a World Class Pathologist that specializes in Prostate Cancer. There are about eight that I know of : Source: A Primer on Prostate Cancer by Stephen B. Strum, MD

Two of them are David Grignon(Michigan) 313-745-2520 and joHN McNeal (CA) 650-725-5534

Second

There is an MRI scan for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, any evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet.

In my layman’s opinion it is advisable to have such a test before any surgery or another active treatment. If the cancer is outside the prostate surgery may not be the best decision for treatment.

Basically this MRI with the 3.0 Magnet shows very fine resolution, so there is a very good chance that extracapsular extension if it exists will be shown.

.............................................................

Remember Prostate Cancer is fairly slow growing so you want to do your due diligence to explore various active treatments that are available.

........................................................

There is a difference between doctors, and institutions....you want the best for success. This is especially true if your choice will be robotic surgery...there is a very steppe learning curve  Unless a surgeon is fellowship trainned and has done at least several hundred or more he is practicing on you.

I haven't heard very much about bowel problems from the surgery, but a side effect that happens that I hear of is incontinence. (as well as impotence). The incontinence can be major.

There are also other active treatments available. Others at this site will let you know about them, since they have had first hand experience.

 

mimbyus's picture
mimbyus
Posts: 18
Joined: Mar 2013

Hi hopeful and opt...

 

 

Thanks very much, yours was a very insightful post, and to the point. I needed that little bit of a push to reach out for excellence (If such a thing exists. I hold in reserve a healthy distrust of the medical profession. "Promise the stars...deliver the moon!")

Warm regards,

 

W.T.Wink

hopeful and opt...
Posts: 1310
Joined: Apr 2009

A "healthy distrust" is a good thing. Yes, there are sharks out there. You must use the skills that you gained as an investigative reporter to achieve success.

Do lot's of research read books, internet, meet with experts in various specialties,  local suppot groups that exist in your area of Canada. Be proactive, but also enjoy the moments of life.

There are two usa national support groups, that may also exist in Canada. USTOO and Man to Man. Google them to see if a local support group(s) exists.These people can educate you about the better doctors and hospitals, as well as provide prostate knowledge and emotional support. (I attend local support groups on a regular basis.)

 

mimbyus's picture
mimbyus
Posts: 18
Joined: Mar 2013

hey hopeful and opt...

 

I flagged your last reply! Who ever heard of "flagging" an item for the attention of a third party - in this case the page administrator?

ARE YOU listening, ADMIN PERSON? Please ignore my "FLAG." Please go easy on "hopeful and opt...". He dun no wrong!

In any computer application I've ever used, I "flag" items for my own later reference.

Well, live and learn!

W.T. 

hopeful and opt...
Posts: 1310
Joined: Apr 2009

You said,

"At the risk of sounding like an amatuer: my pathology report produced a Gleason score of "7". I believe there's supposed to be more to the score, as in a mathematical equation, but that's all the doc said when I asked for my score. I know he said the cancer was contained, and he wants to do a surgical removal of my prostate"

The gleason score is low intermediate. Yours is 3+4=7 . The first number is most predominent, there are more less aggressive cancer in the core(the 3) than the more aggressive cancer (the 4).

As a lay person I see that your cancer may be wide spread, and it is possible that the cancer may have escaped the prostate. That is why I recommended the MRI with the Tesla 3.0 magnet.

It is possible, and I hope that it is true that the cancer has not escaped the prostate as your doctor says, buy the MRI will be the diagnostic test to ascertain this.

If the cancer has escaped the prostate, even if the prostate is removed, you will require other treatment(s) such as radiation and hormone therapy.

Side of effects of multiple treatments are cummulative. So if cancer has escaped the prostate in my opinion surgery is not a very good option.

 

mimbyus's picture
mimbyus
Posts: 18
Joined: Mar 2013

Hello again, hopeful and opt...

 

The urologist spoke in certain terms, saying that the cancer was contained. Is it your suggestion however, that at that point, he may not have had full information? 

I would appreciate your clarification.

 

Tx

 

 

W.T.

hopeful and opt...
Posts: 1310
Joined: Apr 2009

universally available, many institutions do not have this equipment, or expert personnel  to administer and evaluate, so  doctors at these institutions do not prescribe this diagnostic test, and make their best judgement based on the information that is available to them.

Yes that is my point. This diagnostic test will provide information about possible extracapsular extension., which in your case is currently not available.

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