CSN Login
Members Online: 11

Prostate Cancer Suspected

redleg
Posts: 4
Joined: Oct 2012

Hello to All

Having come across this site by accident, I am impressed with the wealth of knowledge members have provided especially KONGO. If I may,I will provide some background concerning my situation. I am will be 72 in January and have been dealing with the problem of suspected prostate cancer since 1995 when I had a prostate infection, at that time my PSA was 3.8. My urologist recommended CIPRO and the frequent urination that I experienced went away. Since that time I have had yearly PSA tests with my PSA rising and falling based on the condition of my prostate or blatter. The diagnosis at this time was BPH, as I had a large prostate 40>ml. Cancer was not foremost in the mind of my urologist at this time so we decided on a watch and wait program with regular PSA tests.

I could live with this situation until 2007 when I read about a new test PET/MRI performed by a Professor here in Germany. As my prostate was increasing in size to a very large 150ml (measured by an MRI) I decided to take this test to gain some peace of mind. Of note is that I had also taken a total of 4 PCA3 tests over a two year period with values of 40,19,26 and 10, as I did not want to to undergo a biopsy. As you can tell from the results the PCA3 test is totally worthless as it provides such a large discrepancy between reading. At this point my PSA would rise to 9 and later drop down to 5 or 6, based on the condition on my prostate or blatter. My urologist in Germany (he was one of the best)showed no concern over the fluctuation in my PSA, stating that it was all caused by the size of my prostate.

Back to the peace of mind that I wished for. I went to this Professor and had the PET/MRI and to the surprise of myself and my urologist the result was a 1cm growth in my prostate that the good professor thought might be cancer. In my mind this was devastating, however my urologist assured my that this reading was the result of my large prostate and not a cause of cancer. It should be noted the my urologist is also a professor and well respected throughout Germany by his colleagues. He gave the PET/MRI no credence!!!! Here I was faced with a Professor (also well respected) who thought I had a suspected growth and a urologist who wanted to totally disregard this finding.

This was a situation wherein I as the patient had to decide the appropriate course of action. I opted for a biopsy, against the judgement of my urologist, which came back negative (10 samples). While this proved to be good news it was only short lived as the nuclear medicine Professor informed me that they did not biopsy the right spot given the size of my prostate. Once again I was left with this uncertainty as to what course of action to take. A decision was made to take yearly PET/MRI over the next two years to ascertain if any thing changes.

This brings us to the present, wherein my prostate has now grown to a record growth of 270ml and a recent MRI with spectography indicates a suspected growth 3cm by 1.4 cm in the right side of the prostate and a smaller on on the left side. None have penetrated the capsule of the prostate. I have had a new urologist over the past three years, however he also appeared to show no concern over these results once again contributing the results to my large prostate.

Once again I am left to take the next step, that being a 3D biopsy which will hopefully target the suspect area and provide concrete information as to what is going on in my prostate.

I guess the bottom line here is that I survived that past 15 years without having to wear diapers but it came with significant mental anguish. I have a younger wife (16 years) and a young daughter (20) and so no other option than to wait and see what may happen based on the advise of my doctors.

I hope that the 3D biopsy confirms their steadfast opinion. I wish all of you with the same affliction good health and gods speed.

Beau2
Posts: 246
Joined: Sep 2010

Hey Redleg,

A 270 ml prostae is very large, and must give you unique problems. I know mine was one quarter that size and I was getting up several times each night to urinate.

A large prostate is also hard to sample (biopsy), my cancer was found on the second biopsy.

It is also my understanding that a large prostate produces more Prostate Specific Antigen (PSA), proportional to it's size; so guys with large prostates can expect a higher PSA.

I think you are doing the right thing by going ahead with the 3D biopsy. They are not fun, but they are the only way I know of to definitively screen for prostate cancer.

In the past, has your doctor discussed a TURP?

Artillery?

Best of luck.

redleg
Posts: 4
Joined: Oct 2012

Hi Beau2,

You are correct on the Artillery part. 20 years!! I have been lucky with the water retention as I take some natural medications, i.e. saw palmetto and cranberry pills and they have kept my problem under control for the past 10 years. I may get up once at night depending on how much fluid I drink and if my prostate is aggravated more often. I have not considered a TURP as this would be a major operation for me due to the size of my prostate and I have difficulty dealing with the possible side effects. As of this date I can live with my condition as long as cancer is not confirmed and if is, I will have to evaluate how aggressive it is. Thank for your reply.

Stay healthy!!

Beau2
Posts: 246
Joined: Sep 2010

Hey Redleg,

I hear you on the side effects, something you are wise to consider.

On the flip side, after my prostate was removed, I found there was a positive side affect. I could quickly empty my bladder. No more standing at the urinal while a line formed behind me. I can now push the deodorant puck up the side of the urinal (I have to take my joy in small victories).

All the best.

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

Releg,

Welcome to the forum and thanks for sharing your intriguing story. Beau gave you good advice. I think you've been given good advice and medical care by the doctors you have visited as well but it is interesting to see the different perspectives.

As you know, a 270 ml prostate is enormous. It's beyond big. It's a monster. It's size is almost certainly affecting your quality of life through frequent urination and not being able to sleep through the night without making frequent trips to the toilet. I too would encourage your to consult with a urologist with a goal toward undergoing a TURP to remove a good amount of the prostate volume.

As we grow older our prostates grow in size by the proliferation of fibrous material that tends to grow inward. The benign fibrous tissue begins to press against the urethral tube which passes through the center of the prostate from the bladder to the penile bulb. Since the position of the prostate in the pelvic skeletal structure doesn't allow it to move very much, the expanding prostate can clamp down on the urethra and in extreme cases actually clamp off the passage completely. The restricted urethral diameter caused by this fibrous material pressing against it causes typical BPH symptoms of weak stream, frequent urination, and faltering flow issues.

The expanding fibrous tissue also squeezes the gland cells within the prostate and forces out more PSA than in a normal sized prostate. This is what causes elevated PSA in the range of 4-10 in men with BPH although with a prostate the size of yours this PSA may be elevated to even higher levels but still not be an indication of cancer. While BPH is not cancerous, it can cause inflammation and other issues in the prostate which could make prostate cancer easier to develop.

While I agree with your doctor that BPH is the most likely cause of the elevated PSA, in my lay opinion I think he should be more aggressive in treating your condition through a TURP. In my opinion, a medicinal approach to shrinking your PSA is going to have minimal effect on a prostate the size of your. The TURP will also allow them to look at a broad cross section of prostate cells to see if a cancerous condition exists.

Studies show that almost 70% of men in their 70s have some amount of prostate cancer. In most cases this is the indolent variety that is never going to pose a threat to your health and does not require treatment beyond surveillance. As you grow older, the odds that you will have some prostate cancer increases. For example, 80% of men in their 80s who die by some other means and undergo autopsies are shown to have indolent prostate cancer present.

Perhaps I am missing something in your chronology, but why exactly haven't you had a TURP? Is it that your doctors haven't suggested this to you or have you declined the procedure. (From what I have read and discussed with my own urologist, the description of a TURP is much, much worse than the actual procedure)

A good place to start learning about a TURP is here: http://en.wikipedia.org/wiki/TURP

Best of luck to you and I hope that you get some answers soon. Please keep us posted on your progress.

K

mrspjd
Posts: 693
Joined: Apr 2010

Red, welcome here.

While there has been some controversy surrounding the use of 5-alpha reductase inhibitors (5-ARIs), my lay opinion is that they are safe &, from the info you've presented so far, the benefits of 5-ARIs would seem to outweigh the risk. I wonder if you've considered trying them?

Here's some info that might be helpful from the FDA: 
http://www.fda.gov/Drugs/DrugSafety/ucm258358.htm
"Avodart, Jalyn, and Proscar are indicated for the treatment of BPH symptoms in men with an enlarged prostate. Avodart and Proscar are also approved to reduce the risk of urinary retention or surgery related to BPH. FDA believes that 5-ARIs remain safe and effective for their approved indications."

Use your search engine to further research keywords "5-alpha reductase inhibitors + enlarged prostate + BPH"

Best of luck. 

redleg
Posts: 4
Joined: Oct 2012

Hello 5-ARIs,

Thank you for your comments. Yes my doctors recommended 5 alpha reductase ihibitors some time ago but I felt that I could handle my situation without them. I was concerned bout the side effects and they can be significant. For 72 I am still in excellent physical shape and at this point will forgo this medication. Lets see what my biopsy brings.

Thanks again and continued good health.

mrspjd
Posts: 693
Joined: Apr 2010

Same,

Re your comment about 5 ARIs:
"I was concerned bout the side effects and they can be significant." I wonder exactly what your concerns are about the side effects & trying 5 ARIs. Every drug has potential side effects, but greater risk from TURP or urinary retention (worst case kidney failure) would seem to be of more serious concern. And if PCa IS dx'd, as it stands now, any experienced and knowledgeable PCa specialist would likely advise that the Prostate volume/size be reduced prior to most PCa txs.

The following study link may or may not be applicable here, but the study conclusions are important & relevant, nonetheless:
"The Effects of Body Mass Index on Changes in Prostate-Specific Antigen Levels and Prostate Volume over 15-years of Follow-up: Implications for Prostate Cancer Detection"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3051000/

mrs pjd
Wife of a T3 stage PCa survivor

redleg
Posts: 4
Joined: Oct 2012

Hello Kongo,

Thank you for your response, good advice is always welcome. In regard to the TURP, this would require a major operation in my case, due to the size of my prostate. It cannot be accomplished through the penis. Additionally, no doctor would perform a TURP, unless cancer is absolutely ruled out, i.e. through a biopsy. Given the size of my prostate, they would take 40-60 samples to rule out cancer and still not be 100% sure. This is a risk that I do not wish to take.

To date I do not have a major problem with urination,ED,etc natural medicine, saw palmetto and cranberry pills appear to be a significant help in this regard. Have been using these for that past 10 years. I guess I have been lucky in that regard, however as we get older it still becomes a problem on occasion, but it is manageable given what the alternatives are.

No matter what we undertake, TURP, prostate removal, radiation, etc, we are still left with a timebomb in our bodies that will most likely plague us until death. I cannot over emphasize the importance of finding a good urologist, who is not only qualified and current in his field, but also one who listens to his patient. If one can find such a physician then you are well ahead of the game to survive.

Thanks again for your comments and look forward to more exchanges of information.

Stay healthy!!!!!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network