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Figuring Out All the Information from a Prostate Cancer Diagnosis

bellinghamtom
Posts: 4
Joined: Jun 2012

I’ve just been diagnosed with prostate cancer. The information I’m receiving makes me a little puzzled, since on some measures, I am low risk, and other measures I am quite high risk. Books seems to suggest that prostate cancer is different for each person, but that makes deciding which is which factor is important when I have conversations with my doctors. My doctor says that the high PSA and the jump in the last year is all that matters in the determination. Does anyone have any insights from their experiences?

New information: Prior to a second opinion, I had an additional PSA test done, and it dropped from 31 to 17. In three months, it went from a ten year average around 14 to 24, to 31 after an additional month, and then back to 17 in an additional month.

Age is 66. Good health. Walk several miles each day. Parents lived past 90. Cancer survivor wife provides VERY healthy diet.

First high PSA in in 2001.

PSA has ranged from 10 to 14 for the last ten years.

Biopsies in 2001, 2002 and 2003 showed no cancer.

Disease was not palpable, even in 2012.

Decision was made not to do further biopsies until the PSA rose.

PSA in 2012 was 31. Biopsy showed cancer.

Pathology report showed the following:

Right Lobe
Acinar Type Adenocarcinoma
Histologic Grade: Gleason Major Pattern 3; Minor pattern 4 Pattern Score 7
3 of 9 cores positive
Greatest length of carcinoma in a single core: 2.5 mm
6 of 135 mm positive (4% involved)
Negative for perineural invasion

Left Lobe
Acinar type adenocarcinoma
Hostologic Grade: Gleason major pattern 3; minor pattern 3; pattern score 6
2 of 7 cores positive
Greatest length of carcinoma in a single core: 2 mm
2.5 of 120 mm positive (2% involved)
Negative for perineural invasion

Some things like non palpable and small involvement indicate low, while other like Gleason and PSA change indicate high.

Bone Scan: No indication of cancer outside prostate
MRI: No indication of cancer outside prostate
CT Scan: No indication of cancer outside prostate
X-ray: No indication of cancer outside prostate

Size of prostate has increased by 50% to 59.
BHP symptoms have been present for several years.

This seems pretty complicated for me to judge. Thanks for any experience to help me understand what besides the doubled high PSA matters from others’ experience.

Bellingham Tom

Samsungtech1
Posts: 350
Joined: Jan 2011

Not sure who the doctor was, but I feel you should have gotten a second opinion. I had all the tests, like you, my psa was 6.4 and was told not to worry. Went for an rp. They found it had spread to the vessels, nerves, bladder, but missed the nodule in my lung because urologist said it never spread to the lung.
I would get at least a second opinion and probably a third because I would have lost faith in your doctor. Harsh, but it is your life. When you get a doctor who knows everything your outcome just went down the tubes.
Ask the members on this site for a reference to a doctor where ever you live. They know the best ones

Good luck,

Mike

bellinghamtom
Posts: 4
Joined: Jun 2012

Second Opinion already scheduled.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I am sorry that your diagnosis has brought you to this site,however where we are able to support you ,and share information from our lay research and experiences with you about the beast.

The PSA which is an inicator is affected not only by prostate cancer, but other factors such as prostate size. Since your prostate is large there had been more PSA secreted, and your PSA numbers were high. There is a ratio that measures psa density= psa divided size of prostate. The lower the number the better.

That said the biopsy is the key information. The gleason score measures the aggresiveness of the cancer. The range is 2-5. One has to look at the highest grade to determine treatment. In your case that is 3+4=7, which means that in that core the most prevelent is a 3, and the secondary score is a 4. A 3+4=7 is better than a 4+3=7, however a 3+4=7 is still a mid level aggressive cancer.

Involvement indicates how much cancer there is in each core, so as understand there is a 4 percent involvement in the core, that is 4% of the 3+4=7 core is cancerous, ( a small involvement), the other cores that are 3+4 have an even smaller involvement.

A cancer that is mid aggressiveness like your needs to be treated, unless you are aged, and your life expectency is limited. The vast majority of us will die from something else, such as heart disease than from prostate cancer.

Acording to the information provided there is no extracapsular extension found in this test( a good thing, probably because there is low involvement).

Non palable indicates that the the Digital Rectal Exam did not show any abnormalties.

Now all that said, I strongly recommend that

1- you get a second opinion on the pathology of your biopsy by a world class pathologist that specilizes in prostate cancer since determining gleason grade is very subjective. You do not want to be under or over treated.

2-what is your age? Life expectence is important in determining treatment.

3-If you do receive active treatment, prostate surgery will solve your BPH problem as well address your prostate cancer, however there is risk of side effects from the surgery.

ralph.townsend1's picture
ralph.townsend1
Posts: 352
Joined: Feb 2012

First is sorry for your condition, and secondly get a new Doctor or a second opinion!!!!

Maybe even a CT scan to see the area of the prostate before you remove it and change your life. Go to a real specialist on prostate cancer and take your biopsy report to allow them to review your condition. Don't just remove your prostate, when you might not need to!

But don't waste time, because you could lose time!!!

hopeful and opt...
Posts: 1293
Joined: Apr 2009

an mri with a spectroscopy....this diagnosis test will identify possible extracapsular extension

bellinghamtom
Posts: 4
Joined: Jun 2012

Second biopsy assessment requested.
I am 66, in good health, walk every day, and my cancer survivor wife gives me very healthy food. Parents lived to over 90.
I will be treated of course. Good point on surgery and BPH. We are getting to understand the side effects of all the treatments. Thanks.

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

Tom,
Unlike some of the suggestions from others, I tend to think your doctor handled your situation correctly and prudently.

Your rather high PSA score coupled with the enlarged prostate and symptoms of BPH are common. The prostate sits in a very confined space within the pelvic structure. As the prostate expands with BPH it has nowhere to go and presses up against the surround skeleton structure. This begins to squeeze the gland which pushes more PSA into your bloodstream--thus the higher PSA. The expanding prostate also tends to squeeze against the urethra (which passes from the bladder to the penis by going through the middle of the prostate) which causes frequent urination, faltering or weak stream, start/stopping, and so forth.

Your doctor correctly tested for prostate cancer through biopsies that would have targeted the most likely places to find it. He didn't find anything but kept at it over time until eventually he found some.

I suppose he could have done a saturation biopsy which may have increased the likelihood of finding something but that's not a sure thing either. A biopsy only samples about 1% of the volume inside the prostate so it's easy to miss something, particularly when your other symptoms and PSA could be explained by the BPH.

Many urologists suspect that BPH is a precursor for prostate cancer. But on the other hand the indolent cancer cells found near the center of the prostate and often associated with BPH are nothing to really worry about.

What your pathology shows is a overall 3+4=7 Gleason score which is a 3+3 on the left side and a 3+4 on the right. From what you've written it seems that there is a low level of involvement in each of the cores, which is a good thing. There is also no perineural involvement. That means that they didn't find any cancer near the nerve bundles that surround the prostate which is often considered a precursor for the cancer to leave the prostate gland.

Overall you are somewhere between low and medium risk with many excellent treatment options that should enable you to control this disease now and have no impact on your long term mortality. Treatment choices can affect your quality of life so do your research on potential side effects associated with each treatment choice.

It's always a good idea to get second opinions, particularly on the biopsy samples, but I think your urologist correctly handled your case.

Good luck to you.

K

Samsungtech1
Posts: 350
Joined: Jan 2011

Kongo,
Maybe we should do a poll and see how many people on this site were told the same thing. They told me that. Funny how when they go in and you wake up they tell you about the spread. It might just be me but I have heard this too many times before.

I see your point about the biopsies, etc, but don't you think the doctor should have told him what was coming, and the options before they reached this point.

It is alot easier to be pro-active. Unfortunately most of us end up exacrly where this man is. Now he is fighting a reactive defense. Everything that happens now will be based, depending on the outcome, fear. He has to trust someone, and his doctor got him here. Who else will he listen to?

Seems to me that the doctor could have done alot more.

Mike

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

Mike,

You make some good points and I understand your perspective. My opinion, however, is that given the limited information Tom has made available to us that the doctor acted within accepted norms for the profession. Hindsight is always 20/20 but frankly I respect this doctor for not rushing to an over treatment that could have had an adverse impact on Toms quality of life. M I think urologists have to walk a fine line between being complacent, overly aggressive, and they have to do all of this within the professional and insurance parameters they have to work in.

Coulda, woulda, shoulda doesn't make sense to me in this case from the information that has been presented. Of course he could have done more and maybe he suggested options that we don't know about but this is an imperfect and imprecise process and I think the doctor acted appropriately. At the end of the day Tom still ens up with a relatively low grade prostate cancer and I don't see any way his treatment options have bee compromised.

I hear you about being proactive but I believe proactive too often leads to overly aggressive and inappropriate treatment. That was one of the fundamental reasons the USPTF task force came up with their controversial decision about doing away with the PSA test for men without symptoms.

In any event we are all entitled to our individual opinions and mine is that I think we should use caution when criticizing decisions without having the full picture or the medical background to second guess a professional. I have certainly criticized doctor recommendations in the past but I hope they have only been in situations the seem to obviously deviate from the normal standard of practice. I didn't feel Tom's description met that level.

Best

Samsungtech1
Posts: 350
Joined: Jan 2011

Kongo,
I agree with what you are saying.

thank you for your advice.

Mike

bellinghamtom
Posts: 4
Joined: Jun 2012

New PSA is 17.

tonybuxton
Posts: 78
Joined: May 2012

Your results are very similar to mine as I also had BHP. My Oncologist did IMRT and my PSA went from 42 to 0.1. I also had 3 months Hormone therapy.
I appear to be doing fine. I am 81.
Tony

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