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Active Surveillance

Builder23
Posts: 22
Joined: Jun 2013

I am 74 yrs old with PC 3+3 gleason scale 6 and 7% canc in one core.  I am having the prolaris gene test done but do not have the results.  My urologist wants me to do active surveillance probably because of my age, but I am healthy and on no medications.  I want to live long enough to see my 4 young grand kids grow up.  should I get a second opinion and see an oncologist for help?  thanks.   BTW, just remembered I recently had melanoma skin cancer and lymph node removed and no cancer found.

update:Well finally got my results of the prolaris gene test.  -1.0 consistent with low risk cancer.  They staged it T1c but my Doctor said he thinks it is T2a and I agree.  It said I have a 95% chance to survive another 10yrs.  Other then that not very useful.

Do not know if it has spread already since I have had it for 3yrs without my knowledge.  Doctor says not necessary to get a bone scan or 3TMRI which would put my mind at ease.  Any thoughs on that?  At this point active surveillance only, next PSA in three months.

Samsungtech1
Posts: 350
Joined: Jan 2011

Builder23,

I would say that you are in a good place.  With. Only one core positive, it is not to agressive.  Being in your 70's, and only one positive core, it would seem you should go with Active Survelliance.  Should your PSA start rising then you might want to do what all of us do, get tests.

Just watch your PSA. Get it checked every three months.  One other thing; watch your diet, and exercise.

Mike

VascodaGama's picture
VascodaGama
Posts: 1544
Joined: Nov 2010

Builder

Welcome to the board. It seems that you have become a member because of your positive biopsy.

I cannot understand your real question. Why are you so concerned to engage in Active Surveillance?

AS is proper to all PCa patients, not dependent of their age but of their status. Indolent type of cancers cases are usually recommended to AS because the majority of their carriers dye of other causes. Indolent PCa do not bother or interfere with normal living and doing nothing to treat it equals to avoid the troubles one may incur from a major treatment. In prostate cancer, these involve the risks of permanent incontinence, erectile dysfunction, fistulas, ulcerative colitis, etc., etc.

Surely AS is not a walk in the park and it does not equal to let things loose. It is a commitment to a certain series of exams and screenings done timely and coordinately, which provides the possibility for a latter attack on the cancer if such becomes necessary.

You may be thinking that you would rather do a radical now while young and healthier than wait for a worse prognosis and latter therapy. That is also a valid way to look into your case. You can get second opinions from a medical oncologist but the doctor can not answer for you. You must be the one deciding on what to do. You could get now a second opinion on the biopsy slides to verify the cancer aggressivity.

Typically doctors do not advice radical treatments to older guys over the 75, but they also do not recommend AS because it would have no meaning if one does not commit to a therapy latter. Usually for the 75 plus they recommend palliative type of treatments with “soft” medications or wait-and-see (WW) approach in low risk cases or “heavy” stuff for advanced risky cases. In very advanced conditions they recommend to do nothing. In WW cases one is not committed to any invasive exam apart of the traditional PSA and MRI tests.

I think it better if you educate yourself in the matters of the cancer and treatments to build confidence. You can then consult various doctors and inquire in detail to get to a final decision.

Best wishes in your journey.

VGama  Wink

Builder23
Posts: 22
Joined: Jun 2013

Your reply to my call for help was greatly appreciated.  It sounds like you are very knowledgeable on the subject and has given me thoughts to ask my doctor about.

I know I maybe overly concerned, but this is new to me and I am trying to make an intelligent decision about my health.

I have read about diet and exercise do you have any thoughts on that....thanks.

 

 

Builder23
Posts: 22
Joined: Jun 2013

Thanks Mike, I appreciate your input.

hopeful and opt...
Posts: 1305
Joined: Apr 2009

Since your biopsy shows a low risk, low volume disease you are an excellent candidate for Active Surveillance. It is very likely that your cancer is indolent, that is not likely to spread. Additionally there has been new information put out by Johns Hopkins that relaxes the criteria for Active Surveillance among those who are over 70, which is much more aggressive and volume than you have.

Of course you will have to be viligent with anActive Surveillance protocol, so any possible progression of the disease can be noted. It is best to find a doctor who specializes in Active Surveillance.

I have been in an AS Surveillance protocol for the last 4 and 1/2 years and will continue with this for the rest of my life if I can.

Please feel free to click my name to see information for what I have been doing and a list of various diagnostic tests and studies to educate you.

Feel free to ask any questions that you might have.

Builder23
Posts: 22
Joined: Jun 2013

Just read the write up on your progress and very impressive.

You have done what I would like to do, I am waiting for the results of the polaris gene test and will proceed from there.

What are your thoughts on the Oncotype DX gene test is that better?  Did you have the blood  CTC done?  How about a bone scan.

I have osteoporosis which was discovered in 2011 by accident and Barretts esophagus since 2000.

My Internist only casually mentioned my high PSA I have had for the last three years and a free PSA of 12.  Needless to say he blow it, and so did I for not pushing him on the high results after all he is the doctor and I trusted him.

Thank you for being available for further questions.

hopeful and opt...
Posts: 1305
Joined: Apr 2009

What were the data points of your PSA, and at what time intervals?

Was your digital rectal exam normal?

Basically what led to the decision to biopsy?

As you have learned, you must be the CEO; and the doctors are advisors only. Unfortunately there are doctors who are not as competent as they need to be, and also doctors who do not have your best interest. This is all too common.

Gene tests....I am not able to say which one is better, as a non medical profession I believe that they are fairly comparable. Both of these gene tests are new, I beleive that there are others on the market as well. There will be improvement in gene tests in the next few years. 

Frankly I think that the information that is currently available to you, that is the gleason, psa is adequate for a decision. The gene test may add a little to explain your cancer, but not much. Remember the gene test only looks at the positive cores of the biopsy...the test is not diagnositic of whatever else is going on, if anything. What is required for this is an MRI Tesla 3.0. This will give an indication of what else is going on in the prostate and possible show extracapsular extension. I highly recommend that you receive this test from an experienced center.

The American Urological Association does not recommend a bone scan for patiient with a Gleason under 8. The test does not offer the definition that an MRI does, I have never had one. 

I cannot comment on your osterporosis, however I just had a bone density test (recommended by V Gama who is the expert's expert here as you have probably figured out) This is good for a base line.

I need to leave now for an appointment, I hope this helps you

P.S. Its a good idea for the urologist who is handling the "active surveillance with delayed treatment if necessary' to have a blood test to include a testosterone.

PPs Important to have a life style of diet that is "heart healthy", and an exercise routine to include cardio and resistance trainning.

PPPS You need to acquire knowledge by reading books, attend face to face support groups

PPPPs Vasco gave good advise...have a second opinion on the results of your biopsy so that you are not under or over treated,

Builder23
Posts: 22
Joined: Jun 2013

3.4-2009, 5.6-2010,  5.6-2011  5.4-2012,

DRE not normal found a tumor which led to the biopsy.

What really brought it to a head was my resent surgery for removal of Melanoma cancer on my lower leg.  I discovered that, not my doctor, by accident. I wasn't even sure how long I had it.  Cancer removed and not spread to my sentinole lynph node.  The cancer center Doctor said i was free of cancer but no guarantee.

I questioned my doctor on why he never sent me to a urologist for the high PSA, his comment was if it is steady not a problem!

Thanks again.

 

 

 

hopeful and opt...
Posts: 1305
Joined: Apr 2009

As a non medical professional,   I can understand why the doctor did not biopsy due to the PSA rise.  Sometimes the PSA jumps quickly( due to other factors), then levels. Since there are lots of factors that affect PSA such as bike riding, hard stools, and even sex before the test the PSA is best looked as a trend. In fact mine has jumped and then leveled.  At the time one might have considered a PCA3 test to help in the decision to biopsy or not. 

There is a site, Sloan Kettering that has a nomogram to measure the exact rate of PSA change. Basically in your case when one looks at the PSA's, the rate of change over the last four years was small.

There are different cancers; the prostate cancer is different from melanoma cancer.

By the way as Vasco recommended it is very important to have a second opinion of your biopsy results by a world class pathologist who specializes only in prostate cancer so that you will not be under or over treated.

 

 

Prowler
Posts: 1
Joined: Nov 2013

 

Though this may not directly apply to you, you may find it of useful interest and it may help enlighten someone else on this site.  During my 50’s and early 60’s I had a rather steady PSA of 1.0 or less.  Then about four years ago my PSA started to rise along with several bouts of prostatitis symptoms that were treated with Cipro.  After taking the Cipro my PSA would drop back by about 0.5, but the trend kept rising.  I sort the advice of a number of urologists and internists near my two residences, which all stated I was at low risk for prostate cancer.  I have no family history of prostate cancer, all of my DRE’s, perhaps a dozen different doctors in all, were all normal, along with a normal urine PCA3 test and fairly good “free” PSA levels. 

 

 

 

At age 67 as my PSA was over 3 and starting to approach 4, one urologist offered to do a biopsy.  I told him I was concerned about a false negative test, given the lack of an abnormal DRE.  He stated that if a biopsy missed the cancer that meant the cancer was so small and early that a false negative was not of concern.  I found out shortly after his statement that he was completely wrong.  I kept asking about an imaging test to help resolve the issue for me as well as serve to target the biopsy.  I finally found out about the 3 Tesla MRIs available in major cities that are used along with color Doppler ultrasound to biopsy the prostate.  My local urologist made arrangements for me in New York City to obtain the 3T MRI.

 

 

 

The MRI indicated one very small lesion with a 60% chance of being cancer.  The MRI is performed in several modes to help determine if a lesion is likely to be cancer.  The MRI is painless, has no radiation risks and only your lower body is enclosed in the tunnel.  A biopsy can then be performed using the MRI results to help target the lesion.  In my case, the biopsy targeted two needles on the lesion along with the standard 12-needles that sampled tissue from the rest of the gland.  Only one of the targeted needles found cancer and the other 13 needles were all negative.  Hence, I believed that had I gotten a standard “blind” biopsy I would most likely have received a false negative result that could have delayed my future treatment by a year or more. The biopsy results termed the cancer as moderately aggressive with a Gleason score of 4+3=7.   I was advised and I opted for robotic surgery as I wanted to have the gland and associated tissue and lymph nodes sent to Pathology so I would have a better knowledge of my cancer stage and where to go from here.

 

 

 

After surgery, the Pathology report indicated a more advanced cancer, PT2c.  Their was three lesions rather than only one indicated by the MRI; both lobes of the gland was involved, the major lesion was moderate sized rather than small and the Gleason score was 4+4=8 rather than 7.  One can understand that the chances of a needle biopsy hitting the most advance part of the cancer is most unlikely so one can expect an upstage in Gleason score.

 

 

 

Fortunately for me, the margins were negative and the lymph nodes; seminal vessels and other tissue samples were all negative.   No additional treatments are indicated at this time. 

 

 

 

The more aggressive Gleason 8 score means that even though everything appears negative, there is a 20% chance that the cancer could have already spread to another location.  That means I need to follow up every three months with ultra sensitive PSA tests and hope that my levels are zero, undetectable.  I feel lucky that I kept a close watch on my PSA levels, 12 tests in that four-year period.   I plotting the results on a graph and would bring it to my doctors trying get their help with what I thought indicated cancer.  The doctors never charted my PSA levels and would at most look back at what the result was the last time it was tested. 

 

 

 

I only wish I had learned about the 3T MRI imaging a year early so I could have dealt with this a bit sooner when my PSA level was under 3 and perhaps a less advanced prostate cancer.  Good Luck to all of you.

 

 

 

hopeful and opt...
Posts: 1305
Joined: Apr 2009

The american urological association does not recommend a bone scan for those with gleasons under 8

 It is possible that other cancer may exist in your prostate so it would be a good idea to have a tesla 3.0 mri to see if there is extracapsular extension. Ialso  beleive that with the numbers you presented extracapuslar extension is unlikely.

Builder, only a speck of cancer was found.......I strongly suggest that you go on with your life, simply enroll in a qualifed AS program, preferably at a major insitution if possible so you can make a decision for treatment in the future if necessary(which I doubt)

Best luck

Builder23
Posts: 22
Joined: Jun 2013

Good advice.  Life must go on especailly for my family and grandkids.

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