Prostate Cancer Survivors






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Re: Diagnosed/ Need Help With findings

Since you mentioned Florida, as I would strongly advise you to go up and talk to the folks in Jacksonville at UFPTI about proton therapy ( Also "the Invasion of the Prostate Snachers" is an excellent worthwhile read. Please do your diligence and investigate your treatment options.

Re: Diagnosed/ Need Help With findings


I’ll start trying to answer your specific questions:

1. I don't think it alters the diagnosis to where it would change the fact that I need to do something about it? Agree? No I do not agree entirely. The grading procedure for prostate cancer cells is entirely subjective and is done on very small samples. In my personal diagnosis I had four pathologists look at my slides. The results were GS6, GS5, GS5, GS7. In study after study, the histology of cells examined after a prostate is removed do not agree with biopsy results. About one third are graded higher and about one third are graded lower. So in my book it is important for an expert to look at ALL the biopsy samples to ensure that, as far is possible, they are what they are. There is more information that can be obtained from the samples, such as ploidy, that will provide more information and focus. It may be that all the information from an expert does not change the current position, in which case nothing is lost. On the other hand, a downgrading of the samples might mean that there are less cells designated as prostate cancer while upgrading the samples may mean that a therapy other than surgery is more appropriate in your case.

2. At the bottom of the report it states GS 7 (4+3)Is that worse than 3+4? In terms of current knowledge and grading the answer is yes. A 3+4 is often referred to as GS 7a and 4+3 is referred to as 7b. This is a comparatively new designation and follows the changes in the Gleason grading system in 2010. There is not much data available on the difference between 7a and 7b, but there is a view that 7a tumours are likely to have a more similar outcome to GS6 tumours (many of them would have been scored as 3+3=6 before the change in grading, while GS 7b tumours are regarded as being more like GS 8 (4+4) tumours.

3. How does that get determined and by whom? That depends on your outlook on life and how much you want to be involved in the decision making process. A good doctor should be able to set out all the options available to you and to say which is recommended and why. Regrettably this happens fairly rarely and so men are obiged to accept what the doctor they have decided to trust tells them without question or try to educate themselves so they can ask, and get, answers to their questions. But overall it has to be understood that there is no certainty – no clear answers.

4. What would you recommend as the next step? Peet, I have never met you; I don’t know what your view is on life: I don’t know if you are risk averse or how you calculate risk. I can therefore only say that I found out as much as I could about the disease when I was diagnosed. I did my best to sort the wheat from the chaff. I made my decisions in line with my understanding of the relative risks. In setting up this sight I tried to help men follow the steps that I took and to make the process easier for them. The Yana site is set up to provide the basics and to point to more complex sites. So I would recommend as the next step going to DON’T PANIC and work your way forward page by page.

Oh! And don’t stop asking questions until you have the information you feel you need.

Good luck in your journey along this tricky path – and please feel free to share your story with us.

Re: Diagnosed/ Need Help With findings

Thanks Terry,
I did just request a 2nd opinion from OURLab - 1450 Elm Hill Pike; Nashville TN 37210, recommended on your site.
Thanks for your support. It's invaluable at this time.

I have a consult with a Urological Oncologist on Dec 4th.

They include different treatment options at the same location, which reduces the bias one would find in going to a surgeon, or to only a radiologist. I will see what they come up with and take it from there.

I sometimes feel I don't want to go down the medical route where you last a little longer but with a much reduced quality of life along with pain, suffering and misery. I watched my Dad go through that, although not related to prostate cancer.

Re: Diagnosed/ Need Help With findings


Just one point about the multi-therapy units. There was a bit of a hoo-hah earlier in the year when the suggestion was made that when these were set up by surgeons (and that is predominently the case) the radiology sections ight not have the machionery or expertise that a radiology specialist might have. Now the complainants were radiologists losing business, but there is a valid point at the end of the day. It is important to know that an excellent surgeon will generally produce better outcomes than a poor radiologist and vice versa.

I can understand your feeling "Maybe I should avoid the treatment altogether.", because, as I said to Dexter in response to his post, that was my choice 16 years ago and it has stood me in good stead. But I didn't have the same diagnosis as you have so for you to make that decision would invovle more of a risk than my decision.

One of my Mentors over the years has been a doctor in the Netherlands who is opposed to early intervention. He blieves that quality of life should be the main focus and that symptoms should be managed, if they develop.

You have time to collect the information you need to make a decision that suits you - and there are always a lot of us men out here to lend a hand or an ear or a word.

Re: Diagnosed/ Need Help With findings

One thing I'm a little confused over. Is the pathology report how they determine what is the best treatment option. I would expect some type of mri or color doppler or other tests to determine exact location and if the cancer is contained or not, before moving forward. Like you mentioned and what I could find, the location and extent of both sides with apex involvement, favors radiation.

My plan is to use this facility to determine the best option plan, and then look for the best most experienced centers to implement it. There's a robo-surgery guy who has supposedly done over 5,000. and a radiologist with more than 20 years of brachy therapy experience. He has performed over 4000 prostate seed implant procedures. My neighbor is being treated by him. He not only has prostate cancer but they found a tumor in his kidney and lung.

To add to the uncertainty and misery, here in the good ole USA, healthcare is first and foremost a for profit business. I currently have health insurance through my employer, if I lose my job, I lose my insurance and will have no options until I'm 65, unless they raise the age for medicare higher, which is being discussed. Exclusions and exorbitant premiums are the norm here. This is not a country to get sick in unless you are very wealthy.

Re: Diagnosed/ Need Help With findings

Peet, that's a good basic plan you have.

With regard yo your question:

One thing I'm a little confused over. Is the pathology report how they determine what is the best treatment option. I would expect some type of mri or color doppler or other tests to determine exact location and if the cancer is contained or not, before moving forward. Like you mentioned and what I could find, the location and extent of both sides with apex involvement, favors radiation.

One of the first things we all have to learn in trying to get to grips with our diagnosis and decision making process is to gain a clear understanding that diagnosis is far from an exact science. All tests, scans etc are subject to both technical and human error and interpretation. Some tests produce marginally more accurate results than others, but all have false negative (failing to identify a tumour) and false positive (identifying as a tumour material that is benign) outcomes. Skilled and careful experts are more likely to interpret these findings more accurately than those who do not have the expertise or the time to examine them all.

This is why there can be a wide range of outcomes from the diagnostic process - again if I can refer briefly to my case. The 'worst case' diagnosis was Stage 4; Gleason Score 7a: PSA 7.2. The 'best case' was Stage T1c: Gleason Score 5: PSA 3.3.Now that's a pretty wide range!!

The pathology report is the main 'driver' of decision making because it is the best pointer to the likelihood of the identified tumour as being more or less aggressive. The higher the Gleason Score, the more positive needles, the more investigation should be undertaken to try to ascertain the likelihood of the disease having escaped the gland. That is where scans like MRI and Color-Doppler and ploidy analysis/PAP tests come in. None of them will give a definitive answer to the question "Where is the tumour? Has there been spread?" but when all available information is interpreted by a skilled expert, the probabilities can be calculated more accurately. And then an appropriate decision can be made.

Good luck
Terry in Australia

Re: Diagnosed/ Need Help With findings

Here's another source I found invaluable on my journey. I located a local chapter of UsToo the prostate cancer support group. Chapters usually
have monthly meetings and love to talk to newly diagnosed guys and share their experiences with them. These are guys who have "been there and done that". There is nothing better than learning about "quality of life" issues from guys who live with them every day.
I understand there is another group associated with the ACS called "Man to Man". They don't have a group near me so I don't have firsthand knowledge like I do UsToo. You can find UsToo on the web and they put out excellent monthy newsletters you can read online.

Re: Diagnosed/ Need Help With findings

perineural invasion listed on both pathology reports. What does that mean for me now, should I cash in all CD's?

Re: Diagnosed/ Need Help With findings

Well, I can't give you financial advice, but this excerpt from The Significance of Perineural Invasion Found on Needle Biopsy of the Prostate: Implications for Definitive Therapy may be of interest and some comfort with regard to perineural invasion:

The predictive value of PNI for extracapsular extension has decreased over time because of a downward stage migration driven largely by early detection efforts for prostate cancer. As patients have presented for definitive therapy with earlier, smaller tumors, the significance of PNI on prostate needle biopsy specimens has decreased. The presence of PNI on biopsy specimens does not preclude cure after definitive therapy or mandate wide excision of the ipsilateral neurovascular bundle at the time of surgery, and it should not deter the performance of radical prostatectomy in a patient who is otherwise a good surgical candidate.

Do a google search for prostate cancer perineural invasion and you can learn a deal more.

All the best

Re: Diagnosed/ Need Help With findings

2nd Pathology report. any comments appreciated as first consult with a radiology oncologist next week. I paid $150 for this 2nd report from a site recommended on this forum. Thanks for that Terry
For an additional $350 they offer a more detailed assessment but I passed on that

A) Left Base: Benign prostatic glands and stroma.
B) Left Mid: Prostatic adenocarcinoma, Gleason score
3+3=6, measuring 2mm (10% of the tissue).
C) Left Apex: Prostatic adenocarcinoma, Gleason score
3+3=6, measuring 7mm (40% of the tissue).
D) Left Base Lat: Benign prostatic glands and stroma.
E) Left Lat Mid: Prostatic adenocarcinoma, Gleason score
3+3=6, measuring 2.5mm (20% of the tissue).
F) Left Lat Apex: Prostatic adenocarcinoma, Gleason score
3+3=6, measuring 1mm (7% of the tissue).
G) Right Base: Prostatic adenocarcinoma, Gleason score
3+4=7, measuring 4mm (30% of the tissue).
H) Right Mid: Small focus of atypical glands.
I) Right Apex: Prostatic adenocarcinoma, Gleason score
3+4=7, measuring 5mm (40% of the tissue).
J) Right Lat Base: Prostatic adencarcinoma, Gleason score
3+3=6, measuring 3mm (30% of the tissue).
K) Right Lat Mid: Small focus of atypical glands.
L) Right Lat Apex: Prostatic adenocarcinoma, Gleason
score 3+3=6, measuring 1mm (5% of the tissue).
Comments: Perineural invasion is seen in these biopsies.
Eight of twelve tissue cores are involved with
Report Date: 11/16/2012
All malignant

Re: Diagnosed/ Need Help With findings

What other assessements were they offering? Ploidy analysis for example can be helpful in the deciosion making process.

Good to see that the 7b Gleason Scores have gone back a step.

Good luck

Terry in Australia

Re: Diagnosed/ Need Help With findings

For an additional $350 here is what they offer