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Rising PSA after RP and Salvage Radiation

rmastromon
Posts: 1
Joined: Mar 2012

Late 2005 a biopsy of my prostate was positive for cancer. In February of 2006 I had an RP. Prior to surgery both my bone and cat scans were negative for metastatic disease. My final pathology report showed a Gleason score of 3+4=7. For a little over 2yrs following surgery, my PSA was <0.1. In May of 2008 it edged up to 0.14. A follow up test in June showed a PSA of 0.16. My urologist/surgeon sent me for salvage radiation in July 2008. Again, I had cat and bone scans prior to starting radiation. Both were negative for metastatic disease. Following radiation my PSA had stabilized to 0.1 up until February 2010 when it increased to 0.2. My last PSA test taken in February 2012 was 0.3. In summary I have had an RP and salvage radiation and yet my PSA is rising very slowly. Even though my PSA is rising slowly it appears I have what is defined as "chemical recurrence". My urologist has not addressed this issue or discussed any future treatments. I'm very concerned about waiting around for this disease to spread to other areas. Has anyone out there had a similar situation? If so what type of treatments did you have and what was the outcome?

RM

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

RM,

Welcome to the forum but I am truly sorry that you find yourself here. Many men here have had similar situations and will be able to share their experiences and suggestions.

It is not uncommon for recurrence to occur after initial treatment of prostate cancer. Although it is a very slow growing disease, prostate cancer is inherently metatastic. Typically, 35% of men who undergo RP see a recurrence within five years.

Many studies have shown that salvage radiation taken in conjunction with hormone therapy is the most effective treatment for recurrence. I would be interested to know why your urologist did not pursue this course of action. Was it ever discussed?

The fact that your rising PSA is still not being addressed by your urologist is, to me at least, a warning sign. What is he thinking, anyway?

I would not hesitate to seek some second opinions at this point and I believe that most urologists will want to start you on a hormone therapy regimen soon. There are different drugs for different stages and some have varying side effects. Make sure you understand all the potential side effects of the various drug treatments.

At this stage, your prostate cancer needs testosterone to grow. Hormone therapy will interrupt the production of testosterone in your testes which will curb the growth of most cancer cells. It will not stop all of the cancer cells. Eventually, your cancer will be resistant to conventional hormone therapy and begin to generate its own testosterone. At this point, you may have to move to the next stage which is the use of other drugs that inhibits the production of testosterone within the individual cancer cells.

There are other factors which may be fueling the growth of prostate cancer. You may wish to investigate the impact of dairy and red meat (particularly those dairy and meat products available in the United States where growth hormones are an integral part of the production process) on prostate cancer growth. Many of us have significantly changed our diet as a result of prostate cancer.

Best of luck to you.

K

tarhoosier
Posts: 187
Joined: Aug 2006

RM:
I believe that your recurrence is not dangerous. Your doubling time is impossible to determine since you have increased psa of 50% in two years. You have not doubled. Even if we take this rate and extrapolate to the future, that is a four year doubling and at that rate your disease will be of no risk to you for more than 20 years, with no further treatment. I believe any intervention now with hormones will be an unnecessary and expensive decision with real complications from side effects. And for what?
Those of us in this situation should learn from brothers and sisters with asthma, diabetes, COPD, and other long term chronic conditions that can be dangerous if not monitored. Those people learn to exist, without becoming their disease.

sbj
Posts: 24
Joined: Jan 2011

RM

I appear to be in exactly the same boat as you (see SBJ post of April 4 for details). I too anguish over whether or not to start HT - and when. Or not do anything other than wait - risk the cancer spreading. My oncologist appears to be deliberately vague in advising me what to do. On the one hand he points out that the cancer is still there and is growing and that one day will spread to bone and/or other body parts, but cannot of course say when this will happen. I could have a PSA of 20 and have no symptoms of bone or organ spread. Then again, he says, I could get symptoms with a PSA of 1. This leaves me in a state of dread, not knowing where the cancer currently is (other than its not in the prostate bed, that area having been uselessly blasted with RT), and not knowing when it will break out. I have not yet had any scans. My oncologist says that with the PSA being at a relatively low level, a scan would not be of much benefit - but he would authorize one if I ask for it. I seem to be waiting for a symptom to show that it HAS spread! And if it did, would HT not then be as effective as when done earlier?

caseyh
Posts: 63
Joined: May 2002

The fact that your PSA lowered and stabilized at 0.1 for 19 months suggests that some cancer was left behind in the prostate bed after your surgery. The radiation was successful treating that area, but the disease most likely had already advanced to your lymph nodes. Only a few nodes are accessible during surgery or salvage radiation. Your doctor was almost correct when he advised you that present imaging techniques will not reveal these nodes until they reach a certain size. To complicate matters even more, some nodes may not be treatable after they reach a certain size. Fortunately, a number of doctors in Florida & Virginia have collaborated to develop imaging and treatment techniques that address this problem with considerable success. The techniques are based on the old Combidex technology and are presently not available anyplace else in the country. It requires approximately an 8 week commitment on your part. I know several people who have had this treatment, and I have recently completed the treatment myself. If you would like detailed information about this treatment, email me on this forum, and I will answer any questions that you might have.
Your history is somewhat similar to mine. My history is posted on my profile. I followed salvage radiation with hormonal therapy. There are pros and cons to both hormonal therapy and additional radiation, but having been through both, I would opt for the radiation and hope for a cure early on. I wound up doing it anyway.

Good Luck in whatever you choose to do!

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Casey

I am very interested in knowing your experience with the USPIO-Feraheme test. Can you share details on the requirements and about any particular preparedness to get the test?
What made you to have it done and what were the results?

I think that you were probably looking for metastases in the lymph nodes. Were you involved in the project of Myers/Dattoli to treat oligometastatic cancer?

I checked your profile but you have not included late developments.

RM,...... I have nothing to add on the excellent comments you received from other survivors above. You may also read my comments to SBJ in a similar thread with similar characteristics.
I wish you luck in your judgements.

Appreciated,
VGama

caseyh
Posts: 63
Joined: May 2002

I am a former patient of Dr. Myers, but currently a patient at a major NYC university hospital. I have a friend who went to Holland for a Combidex scan and was subsequently treated at the Datolli Cancer Center for 14 positive nodes. That was 4 years ago. His PSA is undetectable today. I contacted the Dataolli directly in August because I was concerned about my steadily rising PSA. Dataolli sent me to Sand Lake Imaging in late August and I began treatments for two positive lymph nodes in late September at Datolli. No other disease was found. My treatments ended November 30th. I have not mentioned my PSA results because over the past six months, three different labs have been involved with varied results. LabCorp tested my PSA in January, 6 weeks after treatment completion at 2.11. I decided not to look seriously at PSA results until I was out at least 90 days from treatment completion. That test was done on March 8th and my PSA dropped to 1.8. It will take time and additional PSA results to fully evaluate the success of the treatment, but I am encouraged. The 1.8 is a significant variance from my PSA trend over the past two years.

I went to Datolli with a couple of things in mind:
1) I am 12 years out from diagnosis and surgery. I don't think that it would be realistic to expect a cure at this point, although a cure would certainly be welcome. I was hoping to knock the disease back far enough to buy an additional 3 or 4 years with hopes that I might get to the next significant breakthrough.
2) I felt that regardless of the results, I would come home with less cancer than I had when I started treatment, and at 71, I am not concerned about long term radiation effects. I had nothing to lose but a few bucks and nine weeks. Actually, we really enjoyed our stay in Sarasota.
3) I had not been fully evaluated for disease progression since my diagnosis in 2000, and I wanted to know where I was in the whole process. I had no idea at that point if I was even treatable.

So it all came down to either continuing to watch my PSA rise (a common NYC hospital practice) or taking charge of my own health and doing something about it. I chose the latter. So far, the results are encouraging, but it is still early.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Casey

Many Thanks for the info and for sharing your experiences.
It seems that even with this earlier result the matter is for celebration. Your three thoughts converged and you got a good response.
The cancer cells in those spots may be from strands still naïve to radiation (the NDA strands are not resistant to Gys) and you got a positive effect. I do not know what they gave you at Dattoli but I believe in cyber knife for focal treatment of oligometastases, even if one has done pelvic SRT.

This is a “super” blow and I hope you get more than the 4 years you so wish. May be cure, who knows.
Where you required of any preparedness for USPIO?
Who is the doctor that read/interpreted the results?
Was there any particular side effect from the agent Feraheme?
How is it controlled, by testing the lipids?
And, if you don’t mind, how many bucks were the bucks?

Thanks again. Hope for the best.
VGama

mrspjd
Posts: 693
Joined: Apr 2010

Casey,

First, thank you for a very informative post. From you CSN “about” profile, it would appear your PCa is HR/CR. Yet, I offer congrats: on completion of your most recent test and DART tx; on being a veteran CSN member of 10 yrs and; most of all--on being a 12+ yr PCa SURVIVOR! I’m sorry you’ve faced so many PCa challenges but, in my book, your perseverance, positive & fierce attitude are the RIGHT STUFF!

If you’re open to sharing more info about your recent RT tx, I have questions that your profile did not answer/include. Rewind to 2000: What factors first lead your MD to recommend biopsy that subsequently found G 3+4? At initial dx pre RP, what was PSA, T stage, PCa volume, # & % of positive cores? Any post RP path findings of PNI, PMs, or PNs? Did SRT in ’03 include bed AND nodes or prostate bed only? Fast forward to 2011/12: Where were the two positive nodes identified/located, distal, local, specifically? Were the nodes biopsied (laparoscopic) after being found on the Feraheme MRI (Tesla 3?) before RT? Can you describe more about Varian’s DART technology of IG/IMRT that was used to deliver rad to the 2 positive nodes? What was total Gy delivered to each node? Were other diagnostic tests ordered to rule out distal tumors to bone or other soft tissue?

Thank you for this and any add’l info about the Feraheme MRI & RT protocol, etc. that you might be willing to share so that I, and other patient advocates, as well as patients, might learn from your experience. With all the newly approved FDA PCa drugs and those in the medical pipeline, if you are otherwise healthy, there is every reason to believe you will make it far beyond any time limit prediction that you or others have set.

All the very best,

M (mrs pjd)

caseyh
Posts: 63
Joined: May 2002

What factors first lead your MD to recommend biopsy that subsequently found G 3+4? At initial dx pre RP, what was PSA, T stage

My (no longer) GP missed a nodule on my prostate during a annual physical approximately 6 months prior to it being discovered during a visit to my gastroenterologist. He advised that I get a biopsy ASAP. My PSA was 2.6 at the time. That was my last PSA reading prior to surgery. The postoperative pathology report revealed an actual 4+3=7 prostatic andenocarcinoma, predominantly involving the left posterior quadrant with small focus in the right anterior quadrant. There was no perineural invasion or extracapsular extension appreciated. The surgical margins were free from tumor. The pelvic lymph nodes (8 were biopsied) were negative for metastatic spread.
____________

Where were the two positive nodes identified/located, distal, local, specifically?

The radiologist's report describes the nodes as bilateral axillary, mediastinal, right hilar and right retrocrural lymph nodes
_____________

Can you describe more about Varian’s DART technology of IG/IMRT that was used to deliver rad to the 2 positive nodes?

From the Datolli website: DART using all methods of 4D IG-IMRT...strict immobilization is required using an individualized "alpha cradle". A SonArray 4D Ultrasound Guided System is utilized moments before each treatment to ensure that the organs are exactly positioned for the DART "beamlets."- Even the simple motion of breathing can shift the position of the prostate, which is tracked and corrected by a special respiratory gating device. These and other tools allow us to take the 4th dimension of motion into account, ensuring that the right dose is delivered at exactly the right time.
_____________

Were the nodes biopsied (laparoscopic) after being found on the Feraheme MRI (Tesla 3?) before RT?

No
_____________

Were other diagnostic tests ordered to rule out distal tumors to bone or other soft tissue?

The scans done in Orlando are as follows:
Whole body 18-FDG PET/CT scan
Whole body F-18 Sodium Fluoride PET/CT bone scan.
CT of the chest without & with contrast
CT of the abdomen and pelvis without & with contrast,
MRI of the pelvis without & with contrast
MRI of the abdomen without & with contrast
MRI of the neck without & with contrast.
3-D color flow Doppler of prostate bed (Done at Datolli)

mrspjd
Posts: 693
Joined: Apr 2010

Casey,

Thanks for your reply. I hope you consider posting/sharing updates, including more info about your PCa/PSA history re the journey leading up to present day PCa status. IMHO, those stats & experiences, including PSA history, are critical in helping others understand and learn about the process that lead to recent testing and tx decisions.

caseyh
Posts: 63
Joined: May 2002

Where you required of any preparedness for USPIO?
No special preparation. The Feraheme is administered intravenously for a period of about 15-20 minutes. It was developed for use with renal disease and I believe that it has been well tested. It was side effect free for me. There were a number of USPIO patients at Datolli. Nobody reported adverse Feraheme effects.

Who is the doctor that read/interpreted the results?
Dr. Stephen M Bravo interpreted the results. He was involved with the clinical trials for Combidex at Mass. General. Interpreting USPIO images is both an art and a science. Dr. Bravo's reports are detailed and extensive. It seems that he lists and measures every lymph node in your body. The positive nodes are identified on images ported directly to the Datolli Cancer Center. I called Datolli after receiving Dr. Bravo's reports and they interpreted the results over the telephone.

How is it controlled, by testing the lipids?
It is a one shot deal with no followup testing.

And, if you don’t mind, how many bucks were the bucks?
That's a good question. I never really calculated it until now. My out of pocket was minimal. About $1000 at Sand Lake and probably less than $200 at Datolli. Total cost of both procedures was about $110,000 based on the insurance filings. Of course the insurance companies slash these amounts to half or less. So it really depends on your coverage. You may be requested to agree to pay certain bills that might not be covered by your insurance. I have Medicare and a very good United Healhcare secondary policy that paid for almost everything. I did incur considerable travel expenses and a nice condos in Sarasota don't come cheap. IRS allows you to write off $50.00 a day for rentals required for medical reasons.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

The "bucks" may be too many for the ones without a good insurance. I am not so sure if the bill you commented includes the 14 spots RT.
I hope the test becomes common practice in all clinics to give a chance to the many in our boat.
Please let us know about developments.

Wishing you a continuous success.

Thanks.

VG

caseyh
Posts: 63
Joined: May 2002

I am sure that eventually this test and the treatments will become common practice. I do not think that the number of positive nodes necessarily translates into increased cost. I believe that bone mets. or other treatable mets. will influence cost. I mentioned earlier that a friend of mine went to Holland for a Combidex scan and subsequent treatment at Datolli. I checked with a family friend who is a radiologist at that time for his opinion on the procedure. His only caution was that the tests and treatment be done by a radiologists with considerable experience with Combidex and lymph node radiation. Much like Robotic surgery, there is a learning curve to be mastered by both the doctors and the technicians that administer the treatments.
For those considering this treatment, do not be put off by the “bucks.” The figures seem high but in reality the adjusted payments to the doctors are much less. Both Sand Lake Imaging and Datolli Cancer Center have insurance offices that will evaluate your insurance and tell you pretty much what your out-of-pocket cost will be. The costs will most likely be affordable under most insurance plans. The biggest challenge is to go to Sand Lake to find out how extensive your disease might be, and then pack up and go to Sarasota for nine weeks. It is a real commitment. I am thankful that Drs. Myers, Bravo, and Datolli pioneered this treatment and gave me the opportunity to deliver a serious blow to a disease that I have been fighting for 12 years.

mrspjd
Posts: 693
Joined: Apr 2010

Casey,

I may have misunderstood some of the info you posted and was wondering if you would help clarify a few things. I’m aware of the PSA “bounce” effect in post-PCa RT tx, understand that reaching nadir can take time (yrs), and that PSA results from different labs and assays may vary but, there’s a lot I don’t understand.

In a post above on April 9, you indicate: “LabCorp tested my PSA in January, 6 weeks after treatment completion at 2.11. I decided not to look seriously at PSA results until I was out at least 90 days from treatment completion. That test was done on March 8th and my PSA dropped to 1.8. It will take time and additional PSA results to fully evaluate the success of the treatment, but I am encouraged. The 1.8 is a significant variance from my PSA trend over the past two years.” On January 21, 2012, in another thread http://csn.cancer.org/node/234304#comment-1185285 you comment “I am 12 years out with a PSA <1.0.”

Curious re the 2.11 PSA reading in January and the <1.0 PSA reading, also in January: it would seem that the 1.8 reading in March might be interpreted as a rise/bounce up from the <1.0 January reading? Don’t mean to be discouraging but it’s a little confusing and thought you might be able to shed some light.

Considering the many different imaging tests you had in Orlando, how much waiting time was required between the different diagnostic tests due to the use of various different contrast agents, including the Feraheme agent? Was the whole body FDG and F-18 PET/CTs given as one combined test with a contrast cocktail or as two separate imaging tests with different contrast agents?

I’m not sure I understand the findings on your radiologist’s report re the # of positive lymph nodes identified. Were more than two positive nodes found but two were treated (as you indicated)? What was total Gy delivered to each node?

Thanks for any add’l info you can provide.

caseyh
Posts: 63
Joined: May 2002

"I have not mentioned my PSA results because over the past six months, three different labs have been involved with varied results."

Your observation is exactly why I made that point. The <1.0 reading was a typo. It should have read >1.0 (actually 1.11), and was the last PSA reading that I received from the FL lab. prior to making that post. That reading was considerably below the 1.6 result of a test performed 6 months earlier in NYC, but at that point, I believed it to be valid. It wasn't until I received LabCorp results later that month that I concluded that the variances were so extreme that it had to be due to lab error. Had my PSA continued to grow at the same rate as it has for the previous two years, it should now be 2.1(matching the LabCorp results.) Very often, PSA tests are not ordered until at least 90 days after treatment completion. The 1.8 reading 90 days out is reason to be optimistic, but when you have been doing this as long as I have, you learn to temper your expectations and take nothing for granted. Time will tell.

mrspjd
Posts: 693
Joined: Apr 2010

You emphasize: "I have not mentioned my PSA results because over the past six months, three different labs have been involved with varied results." With all due respect, Casey, you have indeed shared your PSA results, although they have been limited to the last few months.

I cannot guess if someone has made typos such as a < or a > or typed a 9 when they meant to type a 0. Therefore, I have to take what I read in black and white at face value. I did not understand the PSA info you posted and that is exactly why I made a point of asking for clarification, not only on your PSA history but other aspects of your PCa journey as well. Questions arose both from your posts and your profile (and still linger).

“…three different labs have been involved with varied results." Three different labs? There are bound to be variances between labs, assay used, lab errors and varied results if three different labs are being used. Even if a patient divides his time between living in three different states, using 3 different labs seems like overkill, at least to me. Nothing wrong with changing labs or even changing docs or seeing other docs for 2nd opinion consults but, do you use three different PCa oncologists, also? After 12 years of survivorship with recurrence, it would seem that one would have at least 1, maybe 2, reliable, reputable, professional labs that could be trusted to analyze ongoing PSA monitoring with some assurance of accurate results.

While I share some of the same concerns expressed by another user here on a different thread (about why your posts were taken down & removed from another internet forum site), I have no reason to doubt that you’re a PCa patient. You may have a wealth of PCa experience to be shared with others. Whether you do so or not is entirely up to you. Good luck.

M

bdhilton
Posts: 759
Joined: Jan 2010

I'm not a doctor but it is interesting that your doc when to salvage with out more of a history of increases....I am starting to believe that these test for metastatic disease are really worthless unless you are full blown PCa.... I would tend to be more conservative than aggressive on future treatments because e the next is a real life changer i.e HT....This is also the hammer I am waiting for but in the mean time I am enjoying life to the fullest ands perhaps I will never need to do anything...all the best-B

caseyh
Posts: 63
Joined: May 2002

Your thoughts are entirely reasonable. I decided not to do the Combidex scan 4 years ago for similar reasons. I did do salvage radiation 10 years ago, and HT about 8-9 years ago along with several other drug therapies. Nothing has stopped the steady progression of my disease. The "game changer" for me at this point is that I am beginning my 13th year of dealing with the disease. Not many people get out this far and even fewer reach 14,15,16 etc. This is the point where things can get nasty. So as explained in previous posts, I have rolled the dice. I've met a number of patients with very serious disease because they made a mistake in judgement somewhere along the way. I don't want to find myself some day saying, "If only I had..." We all have to deal with it our own way.

tarhoosier
Posts: 187
Joined: Aug 2006

This has been one of the best discussion strings ever here. I have really enjoyed it. Thanks to everyone involved. Keep going!

caseyh
Posts: 63
Joined: May 2002

I have shared a lot of personal information in hopes that it may be of some help to other members of the Group. Unfortunately, the thread had deteriorated from useful information about USPIO to speculation as to why I used three labs. If it is that important, and I don't believe it is, why not just ask me why that was necessary at the time? The answer is really quite simple. I think that when things reach this level of activity, it discourages the exchange of personal information and ideas by patients and is counterproductive to what the group is trying to accomplish. I also think that we don't check our right to privacy at the door when we join a group. We all have a right to keep some facts to ourselves until we are ready to share them.

In my opinion, this thread has run it's course. Therefore, I have decided to no longer respond to posts on the thread. Thanks again to you and all who have been supportive. I remain a passionate USPIO supporter and would be more than happy to share any information I have with Patients who contact me via CSN Email.

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

Although I have not been part of this thread, I read your comments with great interest. Thank you.
I agree that we have a right to share or not share as we wish. That we do not have to respond to questions that we believe are intrusive, not appropriate or germane.
I personally ignore noise that I come across at this site, and in life, and just keep focused doing my thing I believe that others see what is happening, and appreciate any good efforts. I appreciate your contribution.
I hope that you keep on contributing at other threads, or wherever.

mrspjd
Posts: 693
Joined: Apr 2010

Frankly, I think one of the reasons the latter half of this thread was interesting is because of the questions that were asked. Quite possibly, those questions were insightful, sophisticated, advanced and provocative, and were instrumental in eliciting info that made for a more informative, perhaps even educational, PCa discussion on this thread.

IMHO, the issue here is not about invasion of privacy, personal questions, “noise,” sharing personal info, questions asked or not asked, or being intrusive. It’s also not about any discussion or thread that has “deteriorated” or a “…thread that has run its course.” How could it be, especially when a knowledgeable, respected, veteran CSN poster (Tarhoosier) comments “This has been one of the best discussion strings ever here. I have really enjoyed it. Thanks to EVERYONE involved. Keep going!”

This is a discussion forum about PCa. Every question asked to casey (and others) was appropriate and germane to PCa and their experiences. The questions were no more of a personal, private or intrusive nature than the questions often asked of other posters by long time CSN members such as “Hopeful and Opt,” aka Ira, himself. If the “noise” (whatever that is) is too loud or too stressful, then perhaps turning off the computer might help reduce stress levels. PCa issues are real and PCa issues are stressful. It may be easier for some to ignore/avoid PCa issues in hopes that ignoring them will make them go away. They won’t. Instead of avoidance or ignoring stressful PCa issues, more effective practical strategies for coping with stress and anxiety might include Mindful Meditation, daily exercise and a healthy diet, etc.

Questions related to casey’s posts were asked with care, compassion & tact and were respectful of privacy. No answers were “forced” and all info was provided willingly...that is, until concerns were expressed about why casey’s posts were removed from another PCa forum. Here’s one more question for “casey” or “Olborne” or whatever other names he’s currently using on different PCa forums (no worries, it’s a rhetorical question): Why DID the admin of another PCa forum determine your posts to be inappropriate and remove them from that website?

If a 12 year PCa survivor limits posts to info solely about recent txs, then previous info related to past PCa/PSA/tx history and experiences are critical and extremely relevant in order for others to fully comprehend and understand present day choices and decisions, particularly when those choices are related to newer imaging and/or tx modalities. If answers are “really quite simple” as casey states, then it begs the question: Why not just skip all the drama and provide/share add’l PCa info/answers/experiences with all forum members rather than only with limited, selected, members via private email.

If anyone--patient or patient advocate--would like info about MRI w/ Feraheme (USPIO) etc., I suggest going directly to the provider’s website. I’ve heard that their patient service staff will put prospective patients in touch with men who have had the advanced imaging and RT tx. If positive lymph nodes and/or mets are identified, the RT may be done by your own (hometown) experienced & skilled RO once the imaging is complete & a report generated.

More than ever, I am an outspoken advocate for PCa awareness and education. Sharing PCa experiences & info have been a part of that process on CSN and, it continues to be part of the process elsewhere. I hold others to the same standard and expect no less from knowledgeable men AND women in the PCa trenches who share this passion. Together, I believe we will continue to make “noise” about PCa. If the noise is too loud or too stressful for some, they can ignore it or purchase ear plugs. Or, they can embrace it.

My husband and I have been on this PCa journey for the last 2+ years since his dx in Feb 2010 of T3, locally advanced, high volume intermediate-high risk PCa. His family has a history of PCa. The men in my family have a history of PCa. PJD and I have 3 adult sons who have a significantly higher risk for PCa than most young men their age due to our combined familial PCa risk factors. As a wife, mother, sister and daughter, PCa is with me 24/7. PCa is not my “hobby” nor is it used to occupy any idle time as a diversion from boredom. PCa is a passion. I hope that those who share that same passion will continue to ask germane, challenging & provocative questions related to PCa issues & topics. For many of us, the PCa education process is on-going and never ending.

Be well.

M

backinthesaddle
Posts: 6
Joined: Apr 2012

Mrspjd…You say you are an “outspoken advocate” but for the most part, your comments seem over the top and at times from my perspective you are inappropriate in your line of questions and statements to others here. I can just imagine how I would be received on the Breast Cancer site here as a man pontificating as you do….I have a cancer that you will never have and from my perspective you need to stay in “check”….

mrspjd
Posts: 693
Joined: Apr 2010

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backinthesaddle
Posts: 6
Joined: Apr 2012

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mrspjd
Posts: 693
Joined: Apr 2010

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Swingshiftworker
Posts: 649
Joined: Mar 2010

Backinthesaddle:

I have no idea if MrsPJD is a woman or not but I don't that think it really matters whether she is or not.

Like you, I sometimes find her remarks off-putting (although probably for different reasons than you do) but she is generally well informed about PCa -- its causes and treatments -- and I generally find the information that she provides useful, even though her remarks can sometimes be a bit disconcerting (even if NOT so intended).

That said, I don't want to get into a "flame" war about her (or your behavior) here and am happy to hear what you both have to say as long as it contributes to the discussion of PCa. However, IMHO, I do NOT think that either of your contributions to this current sub-thread is of any value to the discussion of PCa and I wish that BOTH of you would just knock it off.

I have not "flagged" either of your comments for review, even though I think they BOTH deserve such treatment, and just hope that you will simply end this budding feud by not commenting further.

Just my 2 cents on the topic and I, for 1, will NOT comment further. Ciao!

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

Saddle,

I am quite confident that mrspjd is a woman; not that gender should be a factor here. This forum should be broad enough to host many views and backgrounds as long as they are respectful of others and avoid violating the clearly stated terms and conditions of forum membership.

While prostate cancer is indeed a male disease it affects spouses and other family members as well. Many women come here to seek answers and advice for their loved ones and that is a good thing. Many of us know first hand that support from our spouses is a critical factor in combatting this disease and over the past two years mrspjd has frequently provided perspectives that I am sure many patients and their spouses have found illuminating and comforting.

Like Swing, I too have found some of her posts in the last several months off putting. My skin is thick enough that when she tilts swords in my direction (which seems to be often) I’m not about to strike my tent but it IS annoying and I can appreciate how newer members might be wondering WTF? In balance, despite her occasional tedious lectures delivered from a high horse, she is quite knowledgeable, usually empathetic, and adds a perspective to the forum that otherwise would be missing. I wish she would be more sensitive to the fact that many men do not want to be lectured or questioned about the deeply personal decisions they make about their treatment by the opposite sex and that does not make them misogynistic.

I hope we can all keep in mind that the overarching purpose here is to help our brothers (and sisters) who suffer from this disease one way or another and broaden our knowledge about this insidious and very complex cancer.

K

JamesBurgman
Posts: 1
Joined: Jul 2012

These recent weeks, I can hardly pee even if I really feel to pee. It takes some seconds before I can start peeing, I dont know if I am also experiencing prostate cancer. What are the things that I need to consider or to test to know if I have a prostate cancer or not?

PS,
James

Swingshiftworker
Posts: 649
Joined: Mar 2010

James:

Rather than add your 1st post on this forum to an old thread on an unrelated topic, I suggest that you start a new one of your own so that the members here will recognize it as such and respond accordingly.

As for whether you have PCa (prostate cancer) or not, you can only tell for sure after a biopsy (which involves taking 10-12 tissue samples directly from your prostate). However, your inability to pee may be due to BPH (enlarged prostate) and have nothing to do w/PCa.

So, I suggest that you make an appointment to see a urologist or, if you're in an HMO, see your PCP (primary care physician) and ask for a referral to one based on your symptoms.

Have you ever had your PSA level tested? If so, what was the score? If not, that's something else you need to do too.

Your PSA score(s) won't tell you whether you have PCa or not but it's the only measure we have for monitoring the status of the prostate and, if you in fact have cancer, it will be the only means of determining whether your treatment has been successful or not.

Good luck!

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