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Figure I need something new to worry about....

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1192
Joined: May 2012

I'm a visitor here from Lymphoma, where I have been a regular for some time (full remission, 4.5 years now).  I posted here for a while last year until my friend Gary died of prostate, after a 13-year fight (his psa was 980 at the end)

I would like your opinions on whether I should see a urologist. I had prostate infections about 25 years ago following a month on a cath due to massive trauma. They were very painful and even involved passing blood, but this has not reoccured since 1987.  I have recurring UTIs (maybe one a year) which meds clear fairly easily.   I have had difficulty "starting urine flow" for a few years, and do not empty properly most of the time.

My CTs from lymphoma over the years always showed "Enlarged Prostate," but never any other sort of prostate issues.  My digital exams have always been normal. I have never "passed blood."  I am 57, and recently got a PSA back of 3.7, which was slightly higher than about two years before. My family doctor said "it is normal range, and I am not worried about it."  I had an appointment with my oncologist the following week (my normal six month bloodwork analysis and visit), and he had recievied the PSA report electronically. I asked him about it, and he also said he did not consider it worrisom, and did not feel that I needed to see anyone about it.  I have another friend who has a PSA of around 3.6 who has been in "watch and wait" for a few years, but his biopsys are negative. He says he is on some drug to aid him with ease of flow, which works well for him.

Your thoughts ?

max

 

VascodaGama's picture
VascodaGama
Posts: 1589
Joined: Nov 2010

Max

Welcome back.

I recall your dedication to your friend when he was struggling in the fight with PCa. We all appreciate what you did.

Regarding your case, I would recommend you to get a second opinion from a specialist in particular in regards to what has been found in previous CT. Enlarged prostates produce more PSA serum which could justify your 3.7 ng/ml level. Negative DRE is good news but it must be done by someone very experienced in the touch. What may provide a better clue to what is occurring is to try to find the conclusive cause for the prostate enlargement. Typically this BPH and that could also justify the constant inflammations (UTI) you are experiencing. Blood in the urine is not related to cancer. It is more due to inflammation or due to an obstruction that could be from a large tumour, which most probably would represent a higher level of PSA.

You got already two opinions from doctors. Both gave you a clean bill but PSA=3.7 is not the "normal level" we may be thinking of. My lay opinion is that at 57 a PSA upto 2.6 is more recommendable. If you still are at uneasy (I would be) you may investigate and follow with an image study which can provide you with a better conclusion avoiding a biopsy. The image would help in confirming you status, providing a better idea of what as been found in the CT and it would serve you with a basis for future comparison with other tests. This image must be done with a 3 tesla machine, a Multiparametric MRI prostate cancer exam. Please read this;

http://www.onclive.com/peer-exchange/prostate-guidelines/Multiparametric-MRI-for-Prostate-Cancer-Diagnosis

http://www.radiology.ucsf.edu/patient-care/services/prostate-exam-study

I sincerely hope you do not become a member in our boat.

Best wishes.

VGama  Wink

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1192
Joined: May 2012

Thanks dearly, V .  I am going to look up a good uriologist with oncology expertise this week .

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

I have a slightly different take on the normalcy of your PSA reading.  While Vasco is very correct about normal levels for a man your age, an enlarged prostate adds a twist to th mix since enlarged glands cause a higher than normal serum PSA level in your blood stream.  This is caused because of the male anatomy and where the prostate is located.  As the prostate grows it has no place to expand in the bony pelvic area and what happens is that the prostate squeezes gets compressed and more PSA is squeezed out.  Also, since the urethra passes through the center of the prostate gland, the prostate presses against the uretha which is what is causing the "start/stop" problems when you urinate.

While going to a urologist won't hurt anything but your pocket book, be wary if he suggests a biopsy without a very good explanation.  

Good luck to you and I share the hope that you are not a future member of our club.

 

K

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1192
Joined: May 2012

I appreciate your nuanced view as well, Kongo. 

I just finished the cipro antibiotic for my UTI (seemed to work well), and my doc wants me to go by and leave a urine specimin as follow up, which I will do today or tomorrow.  I have a close friend who is currently 71 and diagnosed with BEP.  He too had biopsys done, all negative, and is on a drug to "relieve the squeeze."   He said the drug started working within two days. His PSA (although he is 14 years older than me) stays around 3.6, but the urologist whom he went to said he did not need to see hm again unless he had "significant changes" in his PSA results or other symptoms.

I am going to make an appointment for my regular (internal med) doc after the urine results are back, and lay out all of this, and demand his best take on it.  I will err on the side of caution, and do whatever he recommends, but I will ask to know why I do NOT need to see a specialist, if that is his opinion.  

At the Lymphoma Board, we get folks who have had some hit on their exams or blood tests, and who seem to become obsessed with the belief that they have the disease.  Most usually confirm (after a lot of further thests) that they are cancer free.  It is challanging to walk a middle path and know what is most reasonable, but as I said, I am going to stay very focused on this.  I have lost too many friends who spent years in "watch and wait."   My thought on that is "What are we waiting for ? For me to get too far gone to treat ?"

Thank you again,

max

hopeful and opt...
Posts: 1353
Joined: Apr 2009

There is a difference between "watch and wait" and "Active Surveillance with Delayed Trea tment If Necessary" which has been my treatment decision for the last five years.AS is a proactive treatment. This is considered a valid treatment method. I am being treated at a major center of excellence. So far I have not experienced any side effects from any active treatment.

Active Surveilance for delayed treatment  is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar.  I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment as I initially may have choosen. During the last five years I have been able to do complete research to make a best decision for active treatment, which I hope will not be necessary, and that I will die with this disease not because of it.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1192
Joined: May 2012

Again, Hopeful and Optimistic, I offer thanks for yet another view of prostate disease and how to deal with it.  I am glad AS has been working well for you.  It is just not what my many friends with prostate cancer have experienced. Almost certainly, their version of the disease was not clinically "Low Risk." A brother-in-law was stricken at 48, and was dead at 53. He alternated treatments at M.D. Anderson and Sloan (death occured as an in-patient at Sloan). Two other close friends had an almost identical path to each other: each was stricken at 59, and both were dead at 71 or 72.  One of these (a retired IBM engineer) became so expert in prostate disease that he became a lay counselor.  I recall well the night his daughter e-mailed me and noted that he had passed... Dan Folgelberg (the great songwriter and singer) was stricken at 54, and was dead at 56 .

ALL of the people whom I have know with prostate required immediate, complete surgical removal, and all died. Some, like my dear friend Gary, survived for 13 years after immediate removal. I became good friends with his NP, and discussed prostate with her in some detail, and read  failry extensively about each of the drugs he was placed on, which consisted of hormonal (with chemical castration), extensive radiation sessions, and three chemo drugs (Jevtana was his last).  His PSA was 980 at the end.  In total, I count eight men whom I knew personally who travelled this nearly identical path.  I have never (until now) knowingly met anyone on 'AS'.

I know these eight are not "statistically significant," and that no real generalization can be made from my provincial, limited experience with my sphere of personal encounter.  But, it has left me with the strong belief that the most aggressive responses available may be best.

Again, thank you for your imput. I am glad to learn of LRPC, which I was  not previously familiar with.  May you live to see 100 ! That is my Hope for you.

max

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hopeful and opt...
Posts: 1353
Joined: Apr 2009

 Fortunately you have not been diagnosed with Prostate Cancer. Hopefully you will never be. It's true that one treatment type does not fit all who have been diagnosed; that's why it's very important to be educated and seek the bestto manage the disease.

I expect that you will not have to deal  with a diagnosis of this disease.

You are invited to my 100th birthday!!!!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1192
Joined: May 2012

Kongo and all others,

I saw my internal med doc today. I had a urine test yesterday as a follow-up for the cipro I had finished. The tape tested about 7 urine-related values, and all were normal except WBC, which was very slightly elevated, in the "Trace" range.

The doc reminded me that UTIs are hard to clear, and that if I redeveloped symtoms we might go on a long-term antibiotic (he said most last around 8 weeks), but that at present he thinks that all is ok.  I discussed the flow issues I had been having and the enlarged prostate results that I had gotten back on CTs from a few years ago.  He did another digital exam, which he said felt perfectly normal, and agreed that I should try one of these "flow" meds which slightly shrink the gland (Tamsulosin/"Flowmax").  He also mentioned what you had said, K, which was that an enlarged prostate can itself cause higher PSA readings.

My doc is American, but went to med school in Zurich, Switzerland.  He reads many European Journals, and said that most conventions in Europe had more-or-less abandonded using PSA tests in most circumstances, and that the issue was discussed in the US, but was voted down, mostly by uriologists.

max

 

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