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New diagnosis

JimmieJoe
Posts: 15
Joined: Feb 2011

I have been having PSA test done each year since 2003 when my father passed away from the disease. I think he had it for many years before and lived until almost 80. My PSA has fluctuated between 2.1 and 5.4 with a recent score of 4.9. I was biopsied in 2003 and it was negative. My urologist did a recent biopsy and found low-grade cancer, T1C, 1 mm focus 1/10th of 1 core out of 12 cores. He said surgery was an overkill at this time, and wants to do another biopsy in 6 weeks and if he doesn't find anymore disease, wants to do a PSA every three months. I'm concerned if the cancer starts to grow, my choices of healing will be limited. I am 64 years old and in good health. I'm concerned I may not be able to do surgery if I wait too many years. Any suggestions or comments on my diagnosis. Is this really indicative of a low grade cancer that may grow slow?

hopeful and opt...
Posts: 1278
Joined: Apr 2009

As a person who was diagnosed with prostate cancer in March 2009 at age 66 with numbers similar to yours, i am involved in an Active Surveillance protocol.....I was told that my cancer is indolent, not likely to spread so I am pursuing this treatment......my reading indicates that if progression is noted..........I can pursue a more invasive treatment without negative long term effect.

I suggest that you get a second opinion on the slides of your biopsy to confirm that there is in fact a low grade cancer........it is very difficult to read this information, so it is advisable to send to another institution for confirmation.

I do not know why your doctor is advising you to have another biopsy in only 3 months.

If you click my name, you will come to "about me" which lists my journey, and a study that validates Active Surveillance as an appropriate treatment choice.....I personally plan to pursue active surveillance for the rest of my life if possible.

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

Jimmie, welcome to the forum. My statistics were very similar to yours when I was diagnosed last March at age 59. My PSA was 4.3 and the biopsy showed 1 of 12 cores positive for adenocarcinoma at 15% involvement. Stage T1c with a negative DRE result. A second opinion on the biopsy reading confirmed my initial biopsy pathology.

Like hopeful & optimistic, I too am confused as to why your urologist would want to do another biopsy in 3 months. You've been diagnosed with PCa and the issue now is determining whether or not it is safe to avoid aggressive treatment or pursue active surveillance.

From what you have described, your cancer seems to have similar traits to cancers classified as "low risk" or indolent. Of course, all later stage cancers at some point were at a low risk stage (Gleason <= 6, PSA < 10) but continued to grow. Unfortunately, science can't yet determine which type of cancer we have...the kind that really doesn't do anything and will never pose a threat, or the more aggressive kind of cancer that continues to grow, eventually escapes the prostate, and metastasizes in other organs which eventually cause death. The only thing you can really do is to continue to monitor your PSA levels, have regular DRE readings, and investigate potential treatment methods should your cancer show signs of advance.

While AS is a very valid approach for low risk, indolent cancer, I chose to treat my cancer while young and still in good health before it might move to a more harmful stage. I chose CyberKnife radiation treatment and am thankful that I have had zero side effects from this procedure and indications through six months of follow-up show that my PSA has dropped to 0.8 ng/ml and is still falling -- a strong indication that the treatment got the cancer contained in my prostate.

Good luck as you begin this journey that nobody wants to take.

K

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

As a hospice patient I recently had the oncologist in charge of the program at my home for an evaluation. I asked him how the end would come and why. I assumed the cancer went to another organ and did its thing. This almost never happens. Prostate cancer metastasizes almost exclusively to the bone, which is very much true in my case. He said the cancer itself does not kill men, but eventually the will to put up with the pain, or the flu, or some other secondary issue brings about one's demise.
I was quite happy to learn this as I feel like I have a little more control over the end of life. It's not much, but when every day is so precious you take what you can get. All hospice patients have access to a kit to assist the caregiver when the time comes to make the transistion easier.

bdhilton
Posts: 752
Joined: Jan 2010

Jimmie…Sorry to hear we have another reluctant member to our club but welcome all the same…Your biopsy results are an indicator only. What I mean is that your results might be accurate and you are a T1C, etc… However, when your urologist takes the second biopsy the results could be the same or he could pull a sample higher than originally thought… The only 100% accurate reading comes from a post surgery pathology report…

That is why you need to make the decision of surgery; some form of radiation, the “other” treatments or elect to do nothing….Most of us here did our research and made a choice… You need to do the same and never regret your choice and always believe in your choice…I was 54 when diagnosed and selected surgery so I would know exactly what I was dealing with (i.e. the results from the pathology report) and getting the cancer out of me…but again all of this is a personal choice….

I am big on diet and exercise and would suggest you look into some dietary changes as well (e.g. giving up dairy, giving up beef, giving up refined sugars and grains, eat complex grains, etc…)

The best to you in your journey

mrspjd
Posts: 688
Joined: Apr 2010

Surgery (RRP or RP) should never be elected for the sole purpose of obtaining a post op pathology report, whether or not the lab path report is 100% accurate. (Sub-microscopic PCa cells may not be identifiable in the lab.) Surgery should only be elected if all available pre-tx diagnostic staging tests indicate that surgery has the best chance, with the fewest risks, of successful outcome in abating the PCa. The post op path report will then be secondary.

There is another way to get an accurate(?) reading from a pathology report. Autopsy at death also would give a PCa pathology report (albeit, post-mortem), but I wouldn't recommend electing that option to obtain a path report either.

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

Electing surgery for the sole purpose of having a definitive pathology makes no sense to me either as the potential side effects, in my opinion, outweigh whatever comfort such information might provide. Although it is indeed a personal decision, I would hope that men take into consideration quality of life factors when they make treatment decisions.

bdhilton
Posts: 752
Joined: Jan 2010

Kongo… Did I say get surgery just so someone could understand the extent of their cancer? NO…. Potential side effects from surgery? Please enlighten us on the potential side effects of your treatment option…On second thought, you do not need to do that because I believe most of us understand the potential side effects of the 2 main treatments for PCA….

I do not come her that often anymore for reasons but you make me smile with your non stop chatter on the “evils” of surgery and how you play down the side effect of radiation… Face it, PCa sucks no matter what the treatment choice is but the important thing is for all of us to be as healthy as possible…I believe that all should be totally in tune with their diet and exercise…

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

Actually, I was agreeing with mrspjd's conclusion not yours, but I thought that is exactly what you were inferring when you said:

"…I was 54 when diagnosed and selected surgery so I would know exactly what I was dealing with (i.e. the results from the pathology report) and getting the cancer out of me…"

Obviously I misunderstood your meaning...a situation I often find myself after reading your posts.

bdhilton
Posts: 752
Joined: Jan 2010

Sorry my posting are misunderstood by you....

bdhilton
Posts: 752
Joined: Jan 2010

I am not going to argue the fact that the post surgery pathology is the most accurate form of identifying exactly what PCa level you have as that is a fact but I do agree that your form of treatment is a personal matter that you need to evaluate as you are the one that will live with the outcome of that decision…

No I would not solely get surgery just for an accurate assessment of your cancer…my point is that your biopsy is not a guaranteed analysis of the extent of your cancer and that is a fact as well…

I do not understand your post-mortem comment?

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I just reread your post, and I have some questions:

Is your PSA rising lately?, or is your PSA holding steady? What are your PSA numbers since 2003?

Specifically, what is your gleason score?

Since we are more likely to die from heart disease than from prostate cancer, I agree with Hilton that diet and exercise is very important..........heart healthy is prostate healthy...

JimmieJoe
Posts: 15
Joined: Feb 2011

Since 2003, my PSA has been between 3.6, 3.2 (when they biopsied - negative) 5.4 in November,2010 and two months later, 4.9 (when I had the second biopsy and cancer was found.)

My gleason score is 3+3 = 6. I'm told this is low grade and my urologist suggested active surveillance. I will have another biopsy on 4/1/11 to see if there is any other cancer identified. If not, then PSA every 3 months. He promises me that he will not let this get out of hand because I am 63 now and have good insurance, but when I retire in a few years that could all change, as well as my ability to have surgery. Because of my wife's affilitation with The Texas Medical Center, I am seeing a renowned, highly recommended urologist who has been practicing for 16 years. Also, my wife works for an Oncology Clinic at this time and her oncologist feel we have time to just watch this thing.

marc1957
Posts: 79
Joined: Oct 2009

you really need to do your own home work, and make your own decisions, hopefully the data obtained on this forum can assist you to that end.

I had PSA of 4.1 (up from 3.0 the previous year, down from 3.5 the year before that).

Had biopsies, found one core on one side that was positive for cancer, 10%, low grade.
Decided at age 52 for da vinci, post operative found cancer in both sides of the prostate, the samples (10 or 12, i forget) missed it on the other side. Gleasons pre and post op was 3+3 => 6

I am happy with my choice, but there certainly isnt a "one action fits all" for what to do.

Good luck with your dealing with this disease.

-marc

hopeful and opt...
Posts: 1278
Joined: Apr 2009

3+3=6 gleason is a low number. ...How many cores were taken in the November 2010 Biopsy...how many were positive.........what was the gleason of each positive core...what was the involvement of each positive core(what percent had cancer)?

Six months between biopsies is very frequent....generally a year wait is done......

NOt being a medical porfessional, I would :

Get a second opinion of your 10/10 biopsy slides

Consider getting an MRI with a spectroscopy....this will show any extra capular extension, if the cancer is in one or two lobes, stage the cancer.

Also get a PCA3 urine test.

Not get another biopsy in six months

BOBfromNJ
Posts: 32
Joined: Feb 2011

One thing you might want to do is to get a second opinion. Also have another lab look at your slides. The second pathology report I got showed a slight error, enough to change things. Good luck.
Bob

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Hi Jimmie

In this thread you got opinions for the three most common ways to treat a case similar to yours. AS, RP and RT. They all may have the same outcome in regards to controlling the advance of the cancer but the one with fewer side effects is AS. Radical treatments may cause severe side effects which puts patients in constant medical problems non-existent before.

The problematic financial situation (no insurance after retirement) should not make part in the decision. You are handling your way of being and such should be done to have the best regarding quality of life. Your doctor and your wife’s oncologist are advocates of such. You could as well extend the insurance coverage to a later date.

Your comment about age and treatment are not as problematic as you think if you maintain a healthy way of living. The majority of PCA patients are in the bracket age of 64 to 73 and they all have been engaged in prostate cancer treatments. Your doctor is also thinking on that point too.

Your chronology of PSA results is typical of an indolent cancer which gives you time to confirm your real status. The Gleason 3+3 (aggressiveness of cancerous cells) is the lowest in modern standards. If you had checked the biopsy samples to each individual Gleason pattern, you may have had numbers of class 2, which are indicative of very low aggressiveness. Gleason pattern 2 is now considered 3 and that includes you in a higher group.

I would like to suggest you of having the biopsy rechecked in a renowned laboratory with the intent of verifying those patterns.
In the net you can find many articles about “treatments for prostate cancer and their side effects”. You could also take this occasion to have a health check up to rule out any other health problem.

Wishing you make a good decision.
VGama

Klemon
Posts: 26
Joined: Jun 2010

My husband (64) had a similar experience, his father died at 91 but also had it for years... my husbands PSA gradually increased from 3.7 in 2007... to 4.5 in 2008 (biopsy negative), to 6.1 in 2009 (biopsy negative) to 8.2 in 2010 biopsy 1 core of 15 positive at 3+3=6- we were also told that we had all kinds of time, lots of options and no hurry. They suggested watchful waiting for a year if we liked..
We decided on the robotic surgery anyway, as my husband is a surgeon and he knows that if you can remove it while its contained, you are done. His primary Dr also had the surgery ..so we went that route. Long story short, we went to Mayo in Rochester who recc a saturation biopsy which revelaed more positive cores and at a higher grade than was thought. We moved surgery up and added in an exended pelvic lymph node dissection - agressive surgery and added aggressive lymph surgery, but it was worth it. Turns out there was a large volume of cancer throughout the prostate that the punch biopsies kept missing. 3cm x 1 cm x 1cm both right and left side. Final path report was 3+4 =7 and considered confined to the prostate. all nodes were negative. stage 2 since it was on both sides
I can tell you that we had three doctors, 7 pathologists, 4 biopsies, a pelvic MRI, bone and CT scans, normal DREs and ultimately until they removed the prostate and looked at what was what, theey cannot give you a true picture of what you are dealing with.
sugery recovery was a walk in the park, especially after the catheter was removed, full bladder control immediately, sexual function returning at 5 weeks, and going strong,, only leaked an occassional drop or two for about 3 months, ... he is VERY active and rides horses and does alot of heavy work every day, he did not miss a beat. The surgery and our experience at Mayo in Rochester was amazing, they treat more prostate cancer there than anywhere else. I can tell you we don't regret for a mminute the route we took. PSA at 3 and 6 months was undetectable. So far so good. Check again in July.
Good luck to you..

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