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Recent dx of Prostate Ca

Timlong
Posts: 37
Joined: Nov 2011

Hello everyone. I'm new to the site so here goes.
I am 51 and in good health. The lab report which was included with an "approved" life insurance policy binder indicated a PSA of 22. My family Dr. was suprised the policy was approved and did new blood work which confirmed PSA 22. So I got plugged into the system and here it is:

Findings:
PSA 22
12 of 12 POSITIVE
4 plus 5 GLEASON 9
Scan is negative for obvious metastisis (Does not rule out Micro)
Prostate is normal size with palpable mass

Plan of attack:
Consult with Dr. Eun at Phila. Penn
Refers to this as the "Tiger"
Started Lupron 2 weeks ago pre surgery
Non-nerve sparing RP scheduled in late December (hohoho) DiVinchi
Along with nerve bundles...Lymphnode Dissection in pelvis and bladder neck area.
Post surgey plan is radiation with Lupron therapy.

Dr. Eun has indicated a high chance of Metastatic desease and a high risk of PSA recurrance.
He states we must "through the book at it"
How does this plan sound to you guys? Tim

hopeful and opt...
Posts: 1364
Joined: Apr 2009

My opinion as a non medical professional.

If your cancer has metastatized, surgery is not appropriate, since you will also have to also have radiation. Each of these procedures have negative side effects which will be compounded. Consider radiation with lupron therapy, no surgery. The surgery is not necesssary.

Also consider having an Endorectal MRI with a Tesla 3.0 magnet, a diagnosis test to see if there is extratcapular extension.

Timlong
Posts: 37
Joined: Nov 2011

It seems to me that removing the source and then dealing with what could be microscopic metastisis or not if the margins are neg, would be less chance of PSA recurrence dont you think?

Tim

hunter49
Posts: 204
Joined: Oct 2011

Sorry to see your a new memeber. You have other options. I would not do such a radical surgery or any surgery at all with your current diagnosis. The cancer almost gauranteed escaped. Taking away your quality of life will not help you. It may be better to treat this with HT and radiation. Also diet will play a big part. Get a second opinion from another good cancer center (I would recomend Hopkins ). I can get you a number there for an a clinic diagnosis meeting they do monthly for newly diagnosed. They will review your pathology to confirm biopsy Then you meet with their top doctors in surgery, oncology and radiation. You may even qualify for a clinical trial. But surgery is the last thing I would choose. I just had nerve sparing surgery 2 weeks ago but was much lower risk of it escaping the gland. Final path upgraded the gleason score but was all confined and not muti-focal. Good luck my friend and please let nme know if I can help.

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Kongo
Posts: 1167
Joined: Mar 2010

It sounds "logical" that removing the "source" might be a good idea but I would encourage you to seek second and third opinions on this. Removing the prostate at this point is not going to do anything to stop the growth of cancer elsewhere in your body. It's only going to give you additional side effects to deal with. Prostate cancer tends to grow faster once it leaves the prostate gland and it travels through the blood and lymph system.

If you're worried about the "source" I would look into radiation techniques such as SBRT or IMRT that completely radiate the entire prostate.

Remember that it's not PSA recurrence your're worried about...it's cancer recurrence. PSA is just one of several indicators that might signal the presence of cancer. PSA recurrence or a risking PSA after RP is an indication that cancer is continuing to grow outside the prostate.

K

hopeful and opt...
Posts: 1364
Joined: Apr 2009

capular extention in the lymph nodes

http://csn.cancer.org/node/227353

rch
Posts: 79
Joined: Nov 2011

Sorry to hear about the diagnosis. If you ARE going to have the surgery, I would check with the Surgeon if open radical Prostatectomy would be better than Robotic in your case, since the Surgeon can actually touch and feel the capsule and the lymph nodes , and remove whatever feels suspicious. With Da Vinci, the Surgeon does not feel or touch any organs. Please discuss with your Surgeon. That is my opinion.

Timlong
Posts: 37
Joined: Nov 2011

My name is Jeff and I've posted on behalf of Timlong. He reads the responses but wants me to do the posting. Not sure why... but I'm his best friend (35 years) so I'm with him on this journey. His surgery is scheduled 12-28-11 at Penn. In reading various posts I've convinced him to have a second opinion which is scheduled this Thursday at Fox Chase. I dont quite understand why the Penn crew wants to "go wide" in an attempt to get good margins without first doing a biopsy on the surrounging structures. "Going wide" as you see in may first post means Prostate, nerve bundles, lymph node beds in pelvis and bladder area. With his numbers of PSA 22, Gleason 9 (4+5 and 5+4),neg scans and 12 of 12 positive are they assumming the "Tiger" has escaped or is there a chance of containment. This Gleason 9 tumor is palable but nothing in the scan shows up in the lymph or Seminal Vesicles yet we are "throwing the book at it and going wide with radiation and HDT afterwards" according to Penn. If we hear a different plan from Fox Chase then Tim may want to get a third opinion at John's Hopkins. I've read alot about people with these numbers electing no surgery and going with HDT and radiation only. The problem here is if the "Tiger" wakes up they will not do RP because they can't get good surgical planes post radiation. I'll let you guys know what Fox Chase says and in the meantime any feedback or opinions will be most welcome.

Thanx everyone..Jeff for "Timlong"

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Kongo
Posts: 1167
Joined: Mar 2010

Not sure I get this posting sequence but whoever has the cancer you describe here is faced with some difficult choices. I read recently that more than 80% of the men diagnosed with prostate cancer do not seek second opinions and go with the recommendations of their original diagnosing urologist. It is smart that he is having a second opinion here.

My opinion is that the cancer you describe (I am assuming that it is adenocarcinoma) is well advanced and undoubtedly metastatic, bone scans and x-rays notwithstanding. The aggressive approach Dr. Eun suggests with surgery is unlikely to find a cancer contained in the prostate. It is palpable indicating that he can feel it and it appears to be present throughout all areas of the prostate. The 4+5=9 assessment of the Gleason score indicates an advanced and poorly differentiated form of prostate cancer for a man only 51 years old. Even a wide surgical margin is likely to cut across the cancer and contribute to spilling more cancer cells into your friend's system. Although you don't describe all the details of the biopsy report that address PNI or extra capsular extension the presence of these indicators in the context of the rest of the biopsy are likely predictors of metastasis (although in and of themselves they are not). This is why the doctor is saying there is high risk of metastatic cancer and recurrence regardless of the initial treatment course.

The course of surgery and radiation will not stem the spread of this cancer outside the prostate. I would suggest your friend take additional tests involving bone marrow aspiration to look for evidence of prostate cancer. If it is present there (and i suspect that it is likely that it is there) I would urge your friend to cancel any plans for surgery or radiation.

The hormone therapy will arrest the growth of the prostate cancer by depriving the cancer cells of testosterone. The median doubling time of prostate cancer is 475 days. A regimen of hormone therapy for a year and a half is going to allow those cancer cells that need testosterone to avoid apoptosis to die without mitosis. Some of the prostate cancer cells, particularly those that are very poorly differentiated and primitive compared to when it first starts, will either generate their own testosterone or not require it to continue to divide and hormone therapy is not effective for these although chemotherapy might be.

While some may well argue that "throwing the book" at this cancer is prudent, my opinion is that your friend should seriously consider the potential impact on his quality of life if all of these potential treatments are piled on top of one another. My impression, from reading many papers on this is that there is only a small, incremental increase in total long term survival as a result of actions such as surgery or radiation for advanced prostate cancer. Tough decisions all around.

Best of luck to your friend as he sorts this out.

K

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VascodaGama
Posts: 1598
Joined: Nov 2010

Timlong

It seems that your doctor has recommended you the “Mother of all Therapies”, with no explanation on the consequences. Radical Prostatectomy with adjuvant Radiotherapy is a treatment from the 19th, when surgery was considered the “golden” standard to treat prostate cancer. In this “century” newer modalities of treatments have surged getting results on the same levels of standards and in successes.
In fact the two ways for treating PCa, surgery and radiation, do not complement each other but get to the same levels in outcomes, independently. Both are good in contained cases (the whole cancer is laying within the prostate gland) but surgery loses any advantage in localized cases because it cannot assure a total “removal” of the cancer. High risk patients have still other ways of treatment such as Brackytherapy (HDB or Seeds) with long standing successful outcomes.
I hope you inquire about this in your next visit to the doctor.

At 51 years old you tend to lose a lot if your decision is simple based on one solo opinion. I would scrap the scheduled surgery and do more researches before committing. Postponing the treatment by one month would not change the present status and it would provide you the time to get second opinions with specialists in each type of treatment (two or three). You could also do other tests to certify your real diagnosis, as commented above by Hopeful.
I would recommend you to get some sort of understanding about the risks and side effects from each treatment. Many become permanent affecting your quality of life. (Cured but handicapped)

Radical therapies are the norm in young patients (long life expectancy). Nevertheless, hormonal treatments are also recommended for cases were the choice may not assure “intent at cure”.
HT is palliative but it can hold the advancement of the cancer in long periods (years). You could discuss with your doctor about the possibility of starting now HT and doing a radical latter.

Wishing you peace of mind.

VGama

Timlong
Posts: 37
Joined: Nov 2011

Tim met yesterday with Fox Chase and was told that they would make a decision on surgery after an Endo Rectal MRI. They want this study to see if the Ca has spread to the rectum or other surrounding structures. If it has spread and depending to what extent they may not recommend surgery and the treatment would be radiation and HDT. Penn did not do this study nor even suggest it. When we called Penn on this Tim was told this is " an old technic" but if he wanted to they would order it. Seems like some surgeons prefer it and some dont. Seems to me it is very useful in determing to go with surgery or not. His procedure is set for the 23rd at Fox Chase.

Looking for feedback.......Jeff

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Kongo
Posts: 1167
Joined: Mar 2010

Jeff,

Not sure what Penn means when they say "old technic." For a discussion on using various tests on the bone marrow as a decision point for surgery or not I would recommend your friend read Chapter 10 of "The Big Scare: The Business of Prostate Cancer" by Dr. Anthony Horan. It may be available in your local library but I downloaded my copy from Amazon.

K

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VascodaGama
Posts: 1598
Joined: Nov 2010

You are doing the right thing. The E-MRI (with resolution ts3) may find spread of cancer which would alter your friend's clinical stage. This tests may be the best actual technic to find localized cancer.
I still believe that your friend should know about the risks and side effects before any commitment. In PCa, the best diagnosis leads to the best choice of treatment and to success. Do the investigations and make a decision timely.
Do not rush but act coordinatly.

Merry Christmas to both of you.

VGama

Swingshiftworker
Posts: 658
Joined: Mar 2010

In addition to the E-MRI also ask to have an MRSI (Magnetic Resonance Spectroscopic Imaging) done as well. The combination of both is a better assessment tool than E-MRI alone in determining the extent of PCa expansion.

For additional information, see: http://www.prostate-cancer.org/education/staging/UCSF_CombinedMRI_MRSI.html.

Good luck!!!

hopeful and opt...
Posts: 1364
Joined: Apr 2009

although it considered investigation and not covered by insurance, it improves the accuracy of the MRI.........good idea to use a Tesla 3.0 magnet, or at least a tesla 1.5 with the mri

additoally I mentioned a USPIO in a previous comment on this thread.

robot1
Posts: 1
Joined: Dec 2011

Timlong,

Like you I am also new to this forum. Also like another responder I would strongly recommend a second opinion. Since your Doctor is in Phil. I can recommend one of the best robotic surgeons in the country and he is in Phil. Please consider Dr. David Lee at Penn Presbyterian which is part of the Penn medical system. Dr. Lee has performed over 4000 robotic procedures of which about 2600 were Robotic Radical Prosectomies.

I was very near 63 when I got the PC diagnoses. A rapid PSA jump (0.4 - 5.1) within a thirteen month span had me having a biopsy rendering a Gleason score of 9. CT and bone scan were negative. My NJ Urologist set me up with a NJ Radio Oncologist. He also highly recommended Dr. Lee. I met with both Doctors and decided on having the surgery. Due to the very aggressive nature of my PC the Radio Oncologist would only take me on if I committed to a one year regiment of HT prior to radiation followed by another year of HT.

Dr lee indicated that if I had the surgery, follow-up radiation might be required but it would depend on a) what he sees during the operation and/or b)the first post operative PSA result. The surgery revealed that the cancer spread to small part of the right side nerve and part of the seminal vessels. However, he indicated the he was confident that he got it all and was able to spare most of the right nerve and all of the left side nerve.

The bottom line, if I can say that in under 10 years is the post operative pathology of the entire prostate had the Gleason score at 7. All of the 5 post surgery PSA test have been <0.1 or non-detectable. Post surgery my chances of a re-ocurrence was 30%. This figure lowers with each <0.1 PSA test. At this writing I belive I am at 10%.

It's been 17 months since my surgery and most systems are a go so to speak. A non medical eraction occures most of the time and is improving monthly. Continence is not yet at 100% but also improving monthly. I would say that I am in the 85-90 % range.

Finally, besides being a talented and very experienced surgeon, Dr. Lee is realy a very nice guy.

Good luck

Timlong
Posts: 37
Joined: Nov 2011

Thanx Rpbot1.
Today is Tim's E-MRI at Penn. The second opinion at Fox Chase created what he felt was a need for the MRI and if it shows spread to the rectum he may not pull the trigger on surgery. BTW.....his Penn surgeon is Dr. Eun who also has a great reputation along with Dr. Lee. We should know the results in a day or two.
I will keep you all posted when Tim hears from Penn.

Thanx......Jeff

tarhoosier
Posts: 189
Joined: Aug 2006

IF the G score is confirmed, and it likely would be considering the other specs listed and the locale of the biopsy doctor, then this man should never be recommended for surgery. Immediate hormone treatment and consultation with a respected radiation oncologist is the step to follow. A surgeon seeking business in a patient such as this is untrustworthy.

Timlong
Posts: 37
Joined: Nov 2011

Based on Tim's numbers alone are you saying that surgery should not be done? Based on my own research am I understanding correctly that the treatment and prognosis is about the same.
The difference being that he would not suffer the post-surgery effects.

Jeff

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Kongo
Posts: 1167
Joined: Mar 2010

I would also avoid surgery based on the numbers you have described. Despite the negative bone scan this cancer has almost certainly metastasized and the mass which can be felt in the prostate has likely spread to the tissue surrounding the prostate. Removing the prostate will not curb the growth of cancer elsewhere in his body and should the surgeon cut across a positive margin he will dump millions more cancer cells into the bloodstream.

Obviously the choice is up to your friend but it seems to me that he is being rushed into surgery with no good prospects of a successful outcome and he will require radiation and hormone treatment in addition to the surgery.

K

tarhoosier
Posts: 189
Joined: Aug 2006

I am saying exactly what the doctor is saying: high chance of metastasis and strong likelihood of recurrence (persistence) after surgery. BUT, I am saying that this contra-indicates surgery. If the doctor KNOWS he will be unsuccessful in curing the patient, yet believes the best choice is to undergo surgery, with all the problems, certain impotence, significant chance of incontinence (whether he admits it, this is so) he is a man looking for his own interests and not that of the patient. Radiation with hormones is the preferred choice in such cases as it avoids the surgical risks and side effects. If the doctor can explain how certain surgical failure can be best for the patient I would be interested the magical thinking with which he supports this decision.
I wish I could be more uplifting. I would create such a post if there were not so much research and data indicating that radiation with hormones is absolutely the better choice.
Do not depend on me, or anyone here for your decision. A medical oncologist who can make an opinion without bias would be the very best investment of time and money.

Timlong
Posts: 37
Joined: Nov 2011

Endo Rectal Mri results are in:

MRI Results:
Extensive peripheral zone tumor with slight bulging of left prostatic
capsule, but without gross extracapsular spread of tumor noted. No
pelvic lymphadenopathy or osseous metastases are seen.

Dr. Eun and staff has indicated this does not change the plan from Non-nerve sparing robotic surgery with pelvic and bladder lymphnode resection. Follow up with HDT and possible radiation depending on post-surg PSA.

Feedback wanted.

Jeff

tarhoosier
Posts: 189
Joined: Aug 2006

Jeff:
This is not a second opinion. You have just posted the same opinion from the same doctor as before, just with more information about the patient. There is nothing about this additional information that changes anything posted in this thread.
If Hopkins recommends surgery I will be floored.

Timlong
Posts: 37
Joined: Nov 2011

Fox Chase (second opinion) indicated that if the E-MRI does not show obvious spread to the rectum they would concur with Penn's plan. Fox and Penn indicated that if in the event they see more during surgery (not seen by the MRI)such as obvious spread to the muscles or the rectum they would "Close". I think this "lets go in and have a look approach" has merit(not to be compared to Pelosi's lets pass the bill to see whats in it) and at the same time frozen sections are done to establish good margins.
It seems to me that based on Tim's age of 51 that a Multimodal Approach may be the best course of action. From my reasearch... the LOW RISK Pca patients have about the same survival in surgery/no surgery with radiation. However, in HIGH RISK Pca as in Tim's case
the morality is three times higher in patients on HT vs. surgery and twice as high in patients on radiation vs. surgery.
Granted...if he were 81 and not 51 the plan would not be Multimodal.
The third opinion is fourthcoming from Hopkins.
I will keep you all advised and thank you for the input and feedback.

Jeff

Timlong
Posts: 37
Joined: Nov 2011

Tim had the RP last Wednesday. Non-nerve sparing with lymph nodes. He is recovering well and today Dr. Eun advised +SV and the margins and lymph nodes were negative. I have not read the report yet but I will soon. He now has a choice to either watch and wait or do radiation as a precaution to the pelvic area. So... is this a typical report for a gleason 9 with 12 of 12 positive or did he dodge a bullet?

Feedback please.......Jeff

Timlong
Posts: 37
Joined: Nov 2011

I am more confused now than ever. I realize that positive seminal vesicles means extraprostatic extension. But if the lymphnodes and margins are negative does this mean they got it all? ...can you have negative margins and yet still have microscopic mets?

Jeff

tarhoosier
Posts: 189
Joined: Aug 2006

Jeff (Tim)
The seminal vesicle invasion (SVI) is one of the most common places to find escaping prostate cancer tumor cells. The vesicles are attached to the prostate and it is the most natural path for tumor growth. When men show this finding at pathology it means that long time remission is still possible, though with G9 the likelihood of remission is reduced.
Tumor cells (of all types and origin) may spread in ultramicroscopic amounts to any place in the body. It is impossible, at this point, to tell if lymph, blood or other paths have allowed such cancer cells to move elsewhere.
This is the wonder of psa. Men do not have to wait and wonder in exquisite agony for the arrival of symptoms to know they are in trouble. Nor do they have to undergo serious chemo and radiation without knowing the target or even the reality of recurrence. PSA tells all. There is a lot more research about adjuvant and/or salvage treatment with radiation for men such as Tim. SWOG 8794 (Saint Google can answer) is an excellent example of a practice changing trial which found that radiation within some months of surgery had long-lasting and successful results (for most).
For now he must get to work on healing and resting. That is Job #1.

Timlong
Posts: 37
Joined: Nov 2011

Bilaeral prostatic adenocarcinoma. Gleason score 4+5=9 with extension into
bilateral seminal vesicles and associated extensive perineural invasion.
-Tumor present at left apical margin of resection.
-Bilateral vasa deferentia with no specific patholic change.

Prostate size 39 grams
Percent of prostate involved 70%
Extraprostatic extension into SV
SV invasion present
Margin, positive, invasive, left apical
Lymph-vascular invasion: not identified
Perineural invasion: present
Patholic staging: pTNM
Primary tumor: pT3B; sv invasion
Regional lymph nodes(pn) : pNO; involved: 0/examined: 12; no regional lymph node metastasis
Distant metasasis: not applicable

So guys....help me make some sense out of this so I can better understand it and convey what it means to Tim.

Thanx.....Jeff

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Kongo
Posts: 1167
Joined: Mar 2010

Jeff,

This report confirms the warnings myself and others provided about the likely outcome of surgery with the pre-treatment pathology of a Gleason 9. The SVI and positive margin indicate that the prostate cancer had spread beyond the prostate capsule. Although distant metastasis was not seen, you can be pretty sure that there is microscopic cancer in distant organs (the bones are one of the most common places) that will eventually evidence itself through rising PSA scores.

The positive margin indicates that cancer remains in the tissue immediately surrounding the prostate gland. The other downside of a positive margin is that the act of cutting through the cancer just spilled millions of pissed off cancer cells into Tim's bloodstream.

I suggest your friend speak to other doctors now (radiologists and oncologists) about the best way to address this. My guess is that they will recommend a protocol that includes hormone therapy and adjuvent radiation. (Adjuvent radiation means that it is taken before a determination of a biochemical recurrence). You may wish to review this article with your friend: http://www.medscape.com/viewarticle/574809

Prostate cancer in the lymph nodes occurs at a much lower percentage of high risk cases so that fact that it isn't there is a good thing but not necessarily a cause for celebration.

Prostate cancer outside the gland tends to grow faster than when it is inside the prostate. You can expect that early PSA scores will be higher than what you wanted and that they will continue to increase over time, indicating the growth of prostate cancer. Hormone therapy will significantly slow this growth for a number of years. Radiation to the prostate bed will also help curb the expansion of the cancer cells near to where the prostate used to be.

Hopefully your friend recovers quickly from many of the effects of surgery. Since he did not receive nerve sparing surgery he will be unable to achieve an erection without the help of an injection so his sex life is pretty much over at this point. He should be visiting an ED expert and learn about penile injections which is about the only way I know of that will enable him to regain the ability to have an erection sufficient for penetration. Orgasms are another issue altogether but the ED specialists may be able to help there as well. Hopefully he does not have to endure incontinence too. Limp and leaking is no way for a man to go through life.

In my mind, the surgery wasn't worth it. The sad part is that all the indication before surgery indicated he was still going to be between a rock and a hard spot after surgery but he went ahead and did it anyway. Sorry, but I just don't get it. The cancer in the prostate is not what kills men. It's the prostate cancer that makes it to other organs and to the bones and removing the prostate didn't do anything at all to address that. Hopefully he will consider HT and radiation which does have an ability to slow the growth of this cancer.

K

Swingshiftworker
Posts: 658
Joined: Mar 2010

I completely agree w/Kongo's assessment of this tragic situation.

Hopefully, others in similar circumstances will learn that surgery -- at any stage -- is NOT necessarily the solution to the problem of PCa.

Timlong
Posts: 37
Joined: Nov 2011

I understand that CSS, DPFS and BPFS percentages seem to be the same for a Gleason 9
surgery/no surgery but there are conclusions in many reports out there that say in high risk cases RP is indicated for a 51 year old man. I think this is part of an aggressive mutimodal treatment along with RT and ADT.
Tim was holding back urine right after cath removal and now (2 weeks) later has a drip now and then. As far as erections....yep, no more. He is on the pump so the pup wont atrophy. He has recovered well thanks to Dr. Eun at Penn who does great bladder necks.
Anyway guys he has a follow up next month for PSA (waiting for the Lupron to end) and I will keep you all posted.

Jeff

Timlong
Posts: 37
Joined: Nov 2011

Your refernce to cutting through a positive margin and spilling out prostate cancer cells
doesnt seem to be a concern when a core biobsy is conducted through the rectal wall directly into a tumor mass. Any idea why surgeons are not concerned with the spread of cancers cells in this instance?

Jeff

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Kongo
Posts: 1167
Joined: Mar 2010

Actually, Jeff, I would be very concerned about the potential to spread the cancer by means of a biopsy, particularly when the needle comes through the rectal wall. There have been many documented instances of prostate cancer growing along the needle tracks left by a biopsy from a prostate that has been later removed. In breast cancer, there is a 50% higher recurrence rate for women ho have repeated biopsies rather than lumpectomies.

Many, if not most, doctors deny that there is any danger from the biopsy (other than the 4-6% who end up with sepsis) but there have never have been any studies that I know about just some papers that document the phenonema of needle tracking and so forth. Who would fund this study anyway? There is no other way to determine cancer for sure today. But if you think about it, it makes sense (at least to me) that pushing a needle through a sterile, enclosed gland and pentrating a cancer tumor then withdrawing the needle certainly has the potential to spread loose cells through the blood stream or lymph system.

It's a difficult issue because in most situations you can't make a positive cancer diagnosis without that biopsy slide with the cancer cells on it so in my mind, you're damned if you do and damned if you don't.

With the case of a positive margin, you know for sure that you have just cut across a cancer tumor leaving some behind. The cells ripped off the tumor mass during surgery are going into the blood stream. Nowhere else for them to go. Our immunce system will likely get most of these cells but who wants cancer cells flowing around in the blood stream looking for a new home?

I should state again here that this is my personal opinon drawn from a lot of reading about this but I am not a doctor or have anything at all to do with the medical field except as a patient.

Good luck to you and your friend.

barry2468
Posts: 9
Joined: Jan 2012

I have always been against biopsies for prostate. I waited until my psa rose to the point where bone mets showed themselves (my Urologist would not act otherwise) to have ADT. Like you I would not have the prostate removed under any circumstances. That was 2 years ago and other than a few side-effects I am just sailing along as usual. I am 75. Barry

Timlong
Posts: 37
Joined: Nov 2011

Tim met with Dr. Eun today. He has about 98% continence and has recoverd well.
His PSA is now 0.03. He will meet with an oncle soon to discuss HDT and Proton beam at Penn.
I am ramping up again into research mode for Tim and welcome your comments and feedback. Would you say this 0.03 post RP of a G9 with SVI,EPE and PNI (pt3bnomo) is promising?

Jeff

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VascodaGama
Posts: 1598
Joined: Nov 2010

Jeff

Yes it is. After surgery a PSA lower than 0.06 is considered at remission levels. This is to congratulate your friend and you both should enjoy a “smashed” evening out.
I hope the PSA can hold at those levels for a very long time which could mean cure.

Congratulations.
VG

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Kongo
Posts: 1167
Joined: Mar 2010

I agree with Vasco that it seems very promising. I hope the numbers stay low.

K

Timlong
Posts: 37
Joined: Nov 2011

Tim had another Post Rp PSA which is still 0.03. I wanted to know what the T-level was so his dr. ordered that also. Much to the DR's surprise the T-level is 108 and Tim is asymtomatic. Could the 3 month dose of Lupron givin 5 months ago still be skewing the numbers? As I understand a normal T-level is 380-1100. My concern is if that if the T-level is this low and the PSA is 0.03 this may indicate a castrait resistant form of prostate cancer in the works. Perhaps Tim has been Low-T for years which would mean that G-9 tumor was a most aggressive Tiger. No one ever test his T-level over the past 6 months so I guess we wont know what the baseline is. He has not pulled the trigger yet on IMRT to the prostate bed. He feels like this is cured but I keep reminding him that a G-9, 12 0f 12 positive, ECE, PNE, SVI+ and Pos margin is likely to have reoccurance.

Jeff

bdhilton
Posts: 759
Joined: Jan 2010

There are many legit studies on the outcome of having a positive margin....So much is not known...A urologist I know (told me on this forum) that most of the outcome be it surgery, radiation or nothing at all is the "luck of the draw"...I wish you the best in your journey….

http://urology.jhu.edu/newsletter/prostate_cancer410.php

".....And, even if the surgical margins are positive, this does not necessarily mean that the cancer is left behind. How can this be? "There are several different explanations why, when the margins are positive, the tumor may still be cure," says Epstein. "One is that literally you cut across the last few tumor cells" -- that what appears to be remaining cancer is actually a cross-section of the perimeter of the tumor. "And even though it looks like it's a positive margin, there's really nothing left in the patient."

Another explanation is that the act of surgery itself finishes the job, killing any remaining cells. No cut or injury to tissue happens in a vacuum; the area around the cut is affected, too. (Think of lightning striking a tree; the tree dies, but so does a ring of grass around it). "When the surgeon cuts across tissue the blood supply is cut off, there's dead tissue, and that can kill off the last few tumor cells that might have been left behind," Epstein says...."

Another interesting article and there are many... http://www.renalandurologynews.com/positive-margins-do-not-predict-prostate-cancer-mortality/article/136072/

"....Of the patients who died from prostate cancer, 85 had PSM and 95 had negative margins. Although 15-year PCSM was significantly higher for patients with PSM than for those with negative margins (11% vs. 6%), PSM was not associated with PCSM after adjusting for standard clinical parameters, year of surgery, and postoperative radiotherapy...."

Here is great one too but for me I do not give these studies 100% on their Statistical analysis but...Statistical analysis http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430098/?tool=pmcentrez

"...Only 4 factors had a statistically significant association with incident prostate cancer: higher tomato sauce intake was associated with a decreased risk, and African–American race, a positive family history of prostate cancer, and higher α-linolenic acid intake were associated with an increased risk. In contrast, most items were significantly associated with risk of fatal prostate cancer. Specifically, recent smoking history, positive family history of prostate cancer, taller height, higher BMI, and high intake of total energy, calcium and α-linolenic acid were associated with a statistically significant increased risk, whereas higher vigorous physical activity level was associated with lower risk of fatal prostate cancer. For tomato sauce, the magnitude of the inverse association was similar for fatal as for total prostate cancer, and the smaller numbers may have prevented us from detecting a statistically significant association with fatal prostate cancer..."

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Well the Doc is right, Throw the book at it. 12/12 Postive 4+5 gleason 9. I 6/12 positive 4+5 gleason 9 in Oct. 2008. I would get as soon or sooner a CT and bone scan to see where this monster is!!!

I'm a stage 4 or T3bN1 or metastatic prostate cancer in the lymph nodes. I'm on lupron with a drug called Zytiga. :-) MD Anderson is doing a great job. They found mine in the Lymph nodes march 2010 and kept it contain in the pelvis and PSA between 1 to 3.

But time will proably run out. reality check.

Timlong
Posts: 37
Joined: Nov 2011

The Radiation Oncle at Penn's PBT center indicated that PBT to the prostate bed after RP is just starting to be considered at Penn though it is used elsewhere as experemental adjuvant therapy. She feels that due to the Penumbra effect they are unable to treat his prostate bed without missing areas. It seems that IMRT will more likley be able to create the "dose cloud" needed to treat the specific area. She is not happy with his post RP psa of 0.03 however has indicated the possibility that since his margins were positive the psa is being generated from the + margin left behind and perhaps IMRT could cure him. She has indicated a 66% chance of cure. This goes against everything I've researched on a G-9 with 12/12, SVI,PNE,ECE and psa 22. She is not ruling out Mets but has given him and his wife new hope for cure. Has anyone out there been given this chance for cure with these numbers?
Now, I do like the fact that Penn uses certain procedures for IMRT as follows:
1. Cat Scan/MRI Planning
2. Higher Dosages 70 Grey
3. Comb Beam CT scan prior to each session help line up each day
4. Endo rectal ballon each treatment to reduce toxcicity to the rectum and takes away
the daily variables.
So...the bottom line is PBT is out and HDT and IMRT is the plan.

tarhoosier
Posts: 189
Joined: Aug 2006

That psa result, within the pathology reported, is a spectacularly good result. Go for the win with IMRT, but wait until all urinary function is regained. He has been delivered an astounding bit of good, no GREAT luck.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Timlong, I toally agree with you on the number's. Cure no, but hope for some future. The numbers are to high. People like us are special, in that we can help and hope for is that these Doctor's to find a cure and can save the future generations!

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

The penumbra effect with proton therapy, closely related to managing the Bragg peak, is inherent to the nature of PBT. She could just as easily have said proton therapy is not appropriate for treating the prostate bed and even though they may be starting to experiment with it doesn't mean it's an effective treatment.

All photon radiation techniques like IMRT, CK, whatever, create a "dose cloud." It's simply the convergence of where the many directed beams are located. These so-called "dose clouds" are really just a geometric concentration of the beams. A 3-d layout resembles a cloud therefore the name but there is not actually a "cloud" created. The doctor could have just as easily have said, IMRT is more appropriate.

Throwing this type of terminology around by a radiologist is, in my opinion, silly. Patients will undoubtedly nod sagely and think, ahh...the penumbra effect...or, gimme some of those dose clouds without having a clue as to what the doctor is telling them. Doctors should be clear and concise and try to do more to explain in lay terms what is going on. The object is to educate the patient not dazzle them.

I too agree that the post RP PSA is a great reading. Not sure what she wants. The .035 is very close to the lowest possible detectable score for an ultra-sensitive PSA test and given the likely standard deviations inherent in the test is probably fine. A single test is meaningless at this point. You need a trend. So far the trend looks good.

Best,

K

starr15
Posts: 31
Joined: Oct 2011

" The other downside of a positive margin is that the act of cutting through the cancer just spilled millions of pissed off cancer cells into Tim's bloodstream."

There are no data to support this assertion that I know of. Please list any peer reviewed data that does.

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

http://www.europeanurology.com/article/S0302-2838(08)01173-1/pdf/Positive+Surgical+Margins+in+Radical+Prostatectomy%3A+Outlining+the+Problem+and+Its+Long-Term+Consequences

So where would you suggest that those cancer cells dislodged by cutting across a margin go?

Timlong
Posts: 37
Joined: Nov 2011

Tim had another Post Rp PSA which is still 0.03. I wanted to know what the T-level was so his dr. ordered that also. Much to the DR's surprise the T-level is 108 and Tim is asymtomatic. Could the 3 month dose of Lupron givin 5 months ago still be skewing the numbers? As I understand a normal T-level is 380-1100. My concern is if that if the T-level is this low and the PSA is 0.03 this may indicate a castrait resistant form of prostate cancer in the works. Perhaps Tim has been Low-T for years which would mean that G-9 tumor was a most aggressive Tiger. No one ever test his T-level over the past 6 months so I guess we wont know what the baseline is. He has not pulled the trigger yet on IMRT to the prostate bed. He feels like this is cured but I keep reminding him that a G-9, 12 0f 12 positive, ECE, PNE, SVI+ and Pos margin is likely to have reoccurance.

Jeff

Randall72
Posts: 34
Joined: Mar 2011

Been through RP..6/11 continence came back,started IMRT on 3/5/12 juust ended this past week. Had 2 PSAs since surgery,both were 0.05 No big deal side effects of IMRT mostly fatigue.I.m 57 sonn to be 58 still working my butt off LOL so be patient and strong. Also, I had all my RP and IMRT at Abington Mem Hosp Rosenfeld Cancer center. Good luck to Tim.

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