It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board

Fear and Frustration


Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 09-25-2017, 09:38 AM   #1
Playthe88s
Newbie
(male)
 
Join Date: Sep 2017
Posts: 6
Playthe88s HB User
Fear and Frustration

Hi all - I'll make this brief.

I am currently in the "elevated PSA" club. I'm 53, and went to the DR. because my younger brother had a heart attack at 48 and I wanted to get checked out. He didn't ask about the PSA, just gave it.

In March it was 4.9 and of course I freaked. Small backtrack: about 7 years ago I had a terrible episode of Prostatitis that was not helped out by antibiotics. Terrible groin pain, general feeling of being unwell and "inflamed." Sometimes it would merely feel like a pinch or "sand in the tank" sometimes like someone had kneed me in the groin for an hour.

After a month it went away completely. It was during a time of great stress.

The same thing (pain etc) began happening again around this time. Second PSA three weeks later (April) was 5.3. Went to urologist. In June it was 5.1. He wanted to do a biopsy, I wanted another opinion. At this point I was in screaming pain which typically followed my increasingly infrequent ejaculations. Went to a second urologist. PSA in August was 4.9. Pain is really not much changed, even after two weeks of Doxycycline. Was sent to a PT who diagnosed severely compromised pelvic floor tightness and weakness. Next PSA (September) was 6, one month later.

Free PSA was 14% in June, it is 12% now.

So PSA has gone: 4.9, 5.3, 5.1, 4.9, 6, over the course of six months.

Very confused, still have pain, but no real urinary symptoms.

Urologist might move next to MRI, but I don't really see much here about correlating the PSA levels to such a painful condition. Any help would be greatly appreciated.

Thanks you.

 
Reply With Quote
Sponsors Lightbulb
   
Old 09-26-2017, 05:19 AM   #2
IADT3since2000
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,914
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: Fear and Frustration

Hi Playthe88s,

You are not in the “club” yet, but the medical community is obviously reviewing your credentials. Somehow I get the feeling you did not want to join our club. That’s okay. None of us did.

Doing a biopsy now would have been fairly routine years ago, although a strong case could be made then and now that your elevated but fairly stable PSA might very well be the result of a subtle prostatitis, perhaps chronic. While some patients get a quick identification of the bacterium causing the prostatitis, identifying the cause is a lot harder for others, with some never finding the answer. The usual approach, in my layman’s understanding, is to try different antibiotics to see if one works – trial and error (and hopefully success). It’s not like one antibiotic will cure all. Have you and the urologist discussed this possibility? It’s quite possible the doctor is concerned about something that is not covered in your message, but I’m wondering, with your history, why the first approach would not be a sustained attempt to cure the prostatitis.

Here’s where it get tricky: your free PSA percentage, 12%, is in the range that suggests a possibility of cancer, but the problem is that prostatitis also lowers the free PSA percentage. (BPH does not.) In other words, your low free PSA could be totally due to prostatitis.

As for correlating PSA with pain, you are not seeing much here because there isn’t much of an association. Pain can be because of very advanced prostate cancer, and a high PSA often goes with that, but the overwhelming majority of men do not experience pain as their PSA rises to elevated levels. Perhaps more to the point of your pain, you have a history that likely explains the pain due to a cause that is not cancer.

A biopsy is not a huge deal, but there are some fairly minor risks of complications and side effects, most of which can be prevented or dealt with without much of a burden on you. Still, a typical biopsy only samples about 0.04% of the prostate, and if the cancer is not somewhat sizeable or in a number of places in the prostate, there’s a fair chance the cancer, if any, will be missed. For this reason, and due to improvement in imaging technology, what is called a multiparametric MRI (mpMRI) is increasingly being used these days in cases where there is substantial doubt whether a patient has prostate cancer.

A multiparametric MRI not only gives an image of the anatomy, which can itself reveal suspicious areas for cancer, but also looks at how water is moving in the prostate (which is different for normal and cancerous tissue) and the flow of blood (with suspicious blood flow suggesting support for an emerging tumor). Sometimes spectroscopy is also added. All these clues are put together to help decide whether cancer is or is not present, where it likely is, what shape and how large; all of this is a bit rough, but the images, these days, are often amazingly revealing. If candidate tumors are identified, a targeted biopsy is often done, and these have proven more effective than non-targeted biopsies. That’s the gist of it, but there is a lot of information about this if you want to really dig in. As just one instance, at last year’s 2016 Conference on Prostate Cancer, sponsored by the Prostate Cancer Research Institute, there was an excellent talk covering these points by Dr. Mark E, as well as comments by others. I believe the talk is still available, and local Us Too or other prostate cancer support group may have a copy. (Other speakers also touched on such imaging.) PCRI also offers other information resources that are free and relevant to your concerns.

Good luck sorting this out.

 
Reply With Quote
Old 09-26-2017, 05:26 AM   #3
Playthe88s
Newbie
(male)
 
Join Date: Sep 2017
Posts: 6
Playthe88s HB User
Re: Fear and Frustration

Thank you so much for the post. I did not mention that both urologists did a DRE and found nothing unusual. Yesterday, the doctor called and he wants to schedule an MRI. So I guess at least I will some more information. Thank you also for the suggestion to try other antibiotics. The stress, pain and corresponding lack of sleep are taking a toll on me, to be honest. All the best to you, and much appreciation.

 
Reply With Quote
Old 09-26-2017, 11:16 AM   #4
IADT3since2000
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,914
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: Fear and Frustration

I remember a lot of stress after my diagnosis. It's a tough time, even when you are in that maybe no/maybe yes time as you are now.

You might want to call and make sure the doctor intends to use a mpMRI instead of a regular MRI. I think it's very likely he intends the mpMRI version. You could also ask him what equipment will be used (make and model), and specifically whether an endorectal coil will be needed. Many of the older US MRIs require an endorectal coil, while new models do not. I've heard praise especially for late model Siemens mpMRI equipment. Depending on where you are located and can travel, you have some say about where you get that MRI.

About your prostatitis, you can actually see much of the same information available to doctors if you go to www.pubmed.gov, a unit of the US National Institutes of Health, and search for: chronic prostatitis. I just did that and got 3,453 hits. The site provides free links to brief abstracts that report the highlights of each paper (click on the blue hypertext), if the paper has an abstract, and sometimes you can get free access to complete papers from the site. By clicking the filter for abstracts you reduce the hits to 2,270. By adding " AND antibiotic " to the search string, you get 552 hits. By adding " AND diagnosis " you reduce the list to 291 hits. By also adding " AND Cipro ", you get 39 hits. (Cipro is a common antibiotic used for prostatitis.) Conversely, by adding " NOT Cipro " instead, you get 252 hits. This illustrates how you can play with www.pubmed.gov to home in on what you need. The site has a tutorial, and I would also be happy to help, including interpreting some of the medical and research lingo. Usually the purposes and conclusions of a study are pretty clear.

Last edited by IADT3since2000; 09-26-2017 at 11:20 AM. Reason: Premature release of post. Added after Cipro.

 
Reply With Quote
Old 09-28-2017, 02:26 PM   #5
Playthe88s
Newbie
(male)
 
Join Date: Sep 2017
Posts: 6
Playthe88s HB User
Re: Fear and Frustration

Thanks again for your kind help. I have an MRI scheduled with the equipment you mentioned. Hopefully it will be prostatitis. All I know is the pain for the last six months is taking its toll on me. All best to you.

 
Reply With Quote
Old 10-12-2017, 06:37 PM   #6
Playthe88s
Newbie
(male)
 
Join Date: Sep 2017
Posts: 6
Playthe88s HB User
Re: Fear and Frustration

So, not great news. Any help in translation?

Study Result
Impression
IMPRESSION:

12 x 8 mm left anterior midgland-to-apex peripheral zone lesion. PI-RADS 4, high (clinically significant cancer likely). This lesion abuts capsule without gross extraprostatic extension.

5 x 3 mm left anterior distal apex peripheral zone lesion. PI-RADS 3, intermediate (clinically significant cancer equivocal). This lesion abuts the anterior fibromuscular stroma without gross extraprostatic extension.

No seminal vesicle invasion or pelvic lymphadenopathy.
Narrative
MRI Prostate with and without intravenous contrast

INDICATION: No prior biopsy. PSA: 6.0, increasing

TECHNIQUE: Multi-parametric 3.0 Tesla pelvic phased-array coil MRI was performed, including multiplanar T2-weighted images, diffusion-weighted images (including ultra high b-1500 images and ADC map), and dynamic contrast-enhanced images of the prostate. In-and-opposed-phase T1-weighted images and pre- and post-contrast T1-weighted images of the entire pelvis were also obtained. Dynacad software was used for image processing and analysis.

CONTRAST: 8.9 cc Gadavist.

COMPARISON: None.

FINDINGS:

Prostate size: 4.2 [CC] x 3.3 [AP] x 4.7 [transverse] cm for an overall volume of 34 cc.
Intra-vesical protrusion: None

Peripheral zone hemorrhage: None

Lesion localization:

LESION: 1
PI-RADS Assessment Category: 4, High (clinically significant cancer likely)
T2-weighted images: 4 (Circumscribed homogeneous moderate hypointense mass confined to prostate; <1.5 cm)
Diffusion-weighted images: 4 (focal marked decreased ADC & marked increased ultra high b-value signal; <1.5 cm)
Dynamic post-contrast images: (+) Focal early enhancement with edges matching lesion on other sequences
Size: 12 x 8 mm as measured on image 15 of series 9 (ADC map)
Side: Left
Location within transverse plane: Anterior
Level of prostate: Midgland-to-apex
Zone: Peripheral
Extra-prostatic extension: Abuts capsule without visualized EPE

LESION: 2
PI-RADS Assessment Category: 3, Intermediate (presence of clinically significant cancer equivocal
T2-weighted images: 3 (Heterogeneous or non-circumscribed round moderate hypointensity)
Diffusion-weighted images: 3 (focal mild/moderate decreased ADC & normal or mild increased ultra high b-value signal)
Dynamic post-contrast images: (+) Focal early enhancement with edges matching lesion on other sequences
Size: 5 x 3 mm as measured on image 10 of series 9 (ADC map)
Side: Left
Location within transverse plane: Anterior
Level of prostate: Distal apex
Zone: Peripheral
Extra-prostatic extension: Abuts capsule without visualized EPE


Additional peripheral zone findings: None
Additional transition zone findings: Enlarged and heterogeneous in appearance, consistent with BPH.

Extraprostatic extension: See above.

Seminal vesicle invasion: No evidence of seminal vesicle invasion.

Lymph nodes: No pathologic pelvic lymph nodes.

Osseous structures: No aggressive osseous lesion.

Additional findings: None.

 
Reply With Quote
Old 10-13-2017, 12:31 PM   #7
IADT3since2000
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,914
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: Fear and Frustration

Hi again,

This is basically good news, though you might not consider it so at this time. The bottom line is that it looks like, pending confirmation by a well-targeted biopsy, that you have a cancer that needs treatment, but that a cure is quite likely. It is still possible that this will not turn out to be cancer, and on the other hand it is still possible that it could turn out to be aggressive cancer, but the odds are fairly strongly in your favor based on the multiparametric MRI biopsy. Here are some of the details:

Regarding: "IMPRESSION:

12 x 8 mm left anterior midgland-to-apex peripheral zone lesion. PI-RADS 4, high (clinically significant cancer likely). This lesion abuts capsule without gross extraprostatic extension."

- The word “apex”, in the context of a cancer that needs treatment instead of a mild cancer, alerts the doctors to a cancer that has a fairly easy route to escape the prostate capsule if left untreated. Your mpMRI indicates that this tumor does not extend beyond the capsule, which puts it in the range of surgery as well as radiation (which is effective also beyond the capsule).

The PI-RADS grade of 4, out of 5, may seem at first glance as bad news, which in a meaningful way it is, but it is also good news, really, in that it is not a 5. PI-RADS grades essentially break into 3 meaningful groups: 3 or lower is good, probably pointing toward no cancer or active surveillance; 5 heralds a real battle, with multiple therapies probably needed; 4, while indicating cancer that likely needs treatment, is very likely a winnable battle, often with just one kind of therapy, or a one-time combination of therapies, and usually not involving the more burdensome therapies such as chemotherapy. Also, a finding of a 4 (or 5) indicates strongly that a biopsy is warranted; the mpMRI image targets an area that the doctor doing the biopsy should sample with a biopsy probe or two.

The size seems about that of a small marble – not huge, but significant.

- - - - -

Regarding - "5 x 3 mm left anterior distal apex peripheral zone lesion. PI-RADS 3, intermediate (clinically significant cancer equivocal). This lesion abuts the anterior fibromuscular stroma without gross extraprostatic extension."

- This 5 X 3 tumor is between a BB and a pea, rather small, and the grade of 3 suggests this, if it is cancer, by itself would not need to be treated. Sometimes the fibromuscular stroma is confused with a lesion in interpretation of a tricky image.

- - - - -

Regarding - "No seminal vesicle invasion or pelvic lymphadenopathy.
Narrative
MRI Prostate with and without intravenous contrast"

- Sometimes mpMRI is focused exclusively on the prostate, and, as a layman, I’m not sure how much beyond that the image shows. However, the mpMRI can be focused to show a great deal more. It appears that yours picked up the seminal vesicles and at least the pelvic lymph nodes that were nearby and saw no indication of cancer.

- - - - -

Regarding - "TECHNIQUE: Multi-parametric 3.0 Tesla pelvic phased-array coil MRI was performed, including multiplanar T2-weighted images, diffusion-weighted images (including ultra high b-1500 images and ADC map), and dynamic contrast-enhanced images of the prostate. In-and-opposed-phase T1-weighted images and pre- and post-contrast T1-weighted images of the entire pelvis were also obtained. Dynacad software was used for image processing and analysis."

- That 3.0 Tesla magnetic field is powerful, providing excellent image resolution. The T2-weighted images give a good picture of the anatomy, and I think the T1 images support that, but I’m not sure. The diffusion images indicate whether water is moving normally or appears obstructed, such as by cancer. The contrast images indicate whether there is abnormal blood vessel growth, as is needed to support a growing tumor. All these clues are considered together to home in on likely cancer or cancer free areas.

- - - - -

Regarding - "CONTRAST: 8.9 cc Gadavist.
COMPARISON: None."

- The element gadolinium is used as a standard contrast agent.

I’m not sure what “Comparison: None” means. If you find out, perhaps you could share that.

- - - - -

Regarding: - "FINDINGS:

Prostate size: 4.2 [CC] x 3.3 [AP] x 4.7 [transverse] cm for an overall volume of 34 cc.
Intra-vesical protrusion: None

Peripheral zone hemorrhage: None"

- The size is pretty normal – little benign enlargement. The “none” findings are favorable. If it turns out that you have a Gleason 3+4 = 7 tumor there per the biopsy, that size could be significant in deciding whether active surveillance is possible; the PI-RADS 4 grade is on the negative side, and the location is not favorable to surveillance due to the escape potential, but, as a layman, my hunch is that active surveillance is not entirely out of the question at this point pending the biopsy.

- - - - -

Regarding - "LESION: 1
PI-RADS Assessment Category: 4, High (clinically significant cancer likely)
T2-weighted images: 4 (Circumscribed homogeneous moderate hypointense mass confined to prostate; <1.5 cm)
Diffusion-weighted images: 4 (focal marked decreased ADC & marked increased ultra high b-value signal; <1.5 cm)
Dynamic post-contrast images: (+) Focal early enhancement with edges matching lesion on other sequences
Size: 12 x 8 mm as measured on image 15 of series 9 (ADC map)
Side: Left
Location within transverse plane: Anterior
Level of prostate: Midgland-to-apex
Zone: Peripheral
Extra-prostatic extension: Abuts capsule without visualized EPE"

- This is the detail of what we went over above. The radiologist explains that a hypointense (low intensity) area that suggests cancer is rather small and matched by other clues (water movement and blood flow) that suggest a cancer that likely needs treatment, pending confirmation by a biopsy, which will give a Gleason score and other clues.

- - - - -

Regarding - "LESION: 2
PI-RADS Assessment Category: 3, Intermediate (presence of clinically significant cancer equivocal
T2-weighted images: 3 (Heterogeneous or non-circumscribed round moderate hypointensity)
Diffusion-weighted images: 3 (focal mild/moderate decreased ADC & normal or mild increased ultra high b-value signal)
Dynamic post-contrast images: (+) Focal early enhancement with edges matching lesion on other sequences
Size: 5 x 3 mm as measured on image 10 of series 9 (ADC map)
Side: Left
Location within transverse plane: Anterior
Level of prostate: Distal apex
Zone: Peripheral
Extra-prostatic extension: Abuts capsule without visualized EPE"

- The fact that this is an “anterior” lesion indicates it is in an area of the prostate where it would have likely been missed on the old style normal, untargeted type of biopsy.

Abutting means the lesion (tumor) lays against the prostate capsule but has not penetrated beyond it.

- - - - -

Regarding: "Additional peripheral zone findings: None
Additional transition zone findings: Enlarged and heterogeneous in appearance, consistent with BPH."

- This is addressing other details in the peripheral zone as well as details in another zone of the prostate, the transition zone, where only likely BPH is noted, in other words, benign, non-cancerous, enlargement. (But that can be a separate problem in itself that impacts continence, urgency and frequency of urination.)

- - - - -

Regarding - Lesion 2 generally -

- Lesion 2 is milder, as discussed above. I can go into detail if you like, but the format is similar to that in the discussion above.

- - - - -
- - - - -

So there is a bit of BPH, which will contribute a bit to elevated PSA, along with the cancer, and any infection.

These findings indicate the cancer is likely well contained, which makes it likely that an attempt at a cure with surgery or radiation is likely to be successful, assuming use of modern technology and competence.

To me this covers the key bases, but I've been at this a long time, and when I was where you are, I knew little. Please ask if you have further questions.

Again, good luck sorting this all out.

 
Reply With Quote
Old 10-13-2017, 03:43 PM   #8
Playthe88s
Newbie
(male)
 
Join Date: Sep 2017
Posts: 6
Playthe88s HB User
Re: Fear and Frustration

Sir, your kindness and generosity are so appreciated. I know a biopsy is in the near future. If I could beg your thoughts for one other question: given the stats you have seen, can treatment for this possibly wait 2 months? In January I will have a much better mind, will and time for full attention to treatment and cure.

Again, heartfelt thanks. It is such a scary and uncertain time, as you well know.

All best to you.

 
Reply With Quote
Old 10-14-2017, 04:37 AM   #9
IADT3since2000
Senior Veteran
(male)
 
Join Date: Nov 2007
Location: Annandale, VA, USA
Posts: 1,914
Blog Entries: 3
IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
Re: Fear and Frustration

There is a possibility that treatment could wait until January, but the doctors will know a lot more about that after the biopsy. Indeed, there is still an outside possibility that this is not cancer - a long shot.

There are some lifestyle changes you could make now: diet and exercise, plus some mild medication (especially a statin drug if well tolerated - I'm fine as are the vast majority of us, but my wife cannot tolerate any statin). Diet is along the lines of Mediterranean (which I follow), or vegan (harder to follow), or Asian. Exercise is both aerobic and strength (but don't overdo it if you are not already exercising - might be wise to check with your primary care doctor). Stress reduction is also wise, but if you can pull that off at this point you should write a book about how you did it. These lifestyle tactics are not small change.

 
Reply With Quote
Old 10-18-2017, 03:59 AM   #10
Playthe88s
Newbie
(male)
 
Join Date: Sep 2017
Posts: 6
Playthe88s HB User
Re: Fear and Frustration

Howdy - unsurprisingly, you were right on with all your comments, so i was very prepared for the meeting with the NP who coordinates all the care until this is resolved. She was VERY clear that this was not a life threatening case, and went so far as to say she would like the biopsy within 6 weeks but up to 3 months would be acceptable. It is scheduled for 11/27, so will let you know. She said the same as you - 85% chance the one lesion is cancer that will need to be treated, but this is best case scenario because it is all contained, so all treatment options would be open. Outside chance it is the artifact of a chronic inflammation, she was very sympathetic to the pain I've been in for all these months and agreed with the PT that it was likely a chronic pelvic floor muscular malfunction. She mentioned surgery, radiation and focal ablation just as possibilities and we would explore all of those, but that is a different step than we are at at this moment.

Trying to just wrap my head around all of it. It is a shock and very upsetting, but she was great and my doctor is apparently pretty prominent in the field: Dr. Samir Tanjea. She also prescribed a valium for me for the procedure. So hopefully, the anxiety will be controllable. One thing for sure, every person I have met at NYU/Langone has been unbelievably knowledgable, compassionate, and kind. That goes a very long way. I'm dumping my GP and getting one in the system as well.

That's the news!

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
new user - obsessed with my boyfriend's past bentu92 Relationship Health 1 10-15-2015 12:04 PM
Sexual Frustration, Late teen ThisIsBob Sexual Health - Men 2 05-12-2015 04:04 PM
Constant fear of fainting Anxiety Girl Anxiety 3 09-11-2013 03:01 PM
C Diff-Support and Success Story cdiffhelp Irritable Bowel Syndrome (IBS) 0 02-19-2012 05:59 PM
So over everything. TinyBlueHands Depression 5 08-28-2009 03:20 AM




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 01:46 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2017 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!