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3 Weeks After Testing Positive

robert1
Posts: 82
Joined: Apr 2011

I received the results about 3 weeks ago. In the process of trying to buy some life insurance, I found that I have PC. PSA is 3.96, Gleason of 3+3(6) and believed to be in the T1c stage. We are waiting for a second look at the pathology from Hopkins but assume it will be correct or very close. The findings indicate 7 of 14 positive biopsy cores with 3 perineural invasions. Four cores were marked 20%, 20%, 50% and 90% and the other three were not marked with a percentage. The cancer is all on the left side with the right side 100% benign.

In the last 23 days I have done a lot of research and spoken to several doctors and multiple patients. Clearly the truth lies with patients. I have been involved with ACS for almost 30 years and assume this conversation and information site is the absolute best.

It has been amazing to me that virtually every Urologist I have spoken to has quickly recommended surgery; mostly due to my age (54). I am set to speak to 3 solid raiotherapy doctors in the coming weeks and expect they will recommend their specialty.

I am absolutely certain that my QOL is second to survival, but probably not as far a second as with many men. If the percentage difference in success rates is close, I feel there are some things worth taking a small risk for. In short, with the individual cure rate stats being somewhat close for primary treatments, it would seem logical to strongly consider the one least likely to cause long-term urinary or sexual side effects...especially with 3 perineural invasions of my left side nerve bundle.

Am I just as likley to experience long-term side effects from radiation? My research so far would indicate a much lower percentage of serious long-term side effects with radiation over surgery (especially incontinence)...while surgery seems to hold an edge for 10 years cure rates. Is this correct?

While waiting for a second opionion on my pathology, I would really appreciate any guidance you guys can give me.

BRONX52
Posts: 156
Joined: Apr 2010

Sorry you have to be asking these questions, but I would recommend that you do your own research and decide which treatment is best for you. Radiation has improved vastly in the past few years and it would be wise to research all of the various treatment options available prior to making a decision. Surgery is also an option. There are inherent risks involved in every option you contemplate but it is up to you to decide whats best. I had both--surgery and radiation. You often read of negatve side effects of surgery on this site but in my own case there was none. No incontinence, frequency etc: Maybe I was lucky or only those who have issues post on this website. Either way, no treatment fits all. Based on results of your biopsy you will probably have many treatment options and each physician will plead their case as to why their recommendation is best. Unfortunately, prostate cancer is a big business and each doctor wants his share. Best advice is be informed and once you make your decision look forward and not backwards. Good luck!!!!

robert1
Posts: 82
Joined: Apr 2011

Hearing of yours and other's experiences is exactly what I need right now. Thank you!

Swingshiftworker
Posts: 616
Joined: Mar 2010

I and other men here have been treated w/CyberKnife.

CyberKnife (CK) SBRT (stereotactic body radiation therapy) for prostate cancer (PCa) offers the fewest potential negative side effects (sexual and urinary ) w/the same potential success rate of any other treatment (open or robotic surgery, low or high dose rate brachytherapy, proton beam therapy, high intensity focuses ultrasound, external beam radiation therapy and image and intensity modulated radiation therapy) currently available.

I and other men here who have been treated w/CK has experienced no significant side effects. One member treated several years ago reports a PSA level below 1 (which indicates success). The jury is still out for the rest of us but quarterly PSA levels are dropping as hoped. There are numerous threads that discuss CK and reports of treatment here. Just do a simple search for them.

CK is generally limited to men w/Gleason 6, Stage T1c or T2a/b and PSA less than 10. Not sure what significance the 3 perineural invasions have for your eligibility for CK. CK can still be used to apply radiation to the seminal vesicles and nerves adjoining the prostate but if the cancer has traveled beyond the prostate capsule, CK may not suitable. Best to discuss this with a CK specialist in your area.

Good luck!

robert1
Posts: 82
Joined: Apr 2011

I have been hearing more about CK and will now investigate further. Are there 2 or 3 places in the US offering CK that appear to be above the rest?

Swingshiftworker
Posts: 616
Joined: Mar 2010

Sorry can't really tell you which are the "best" places to receive CK treatment but I think you can assume that the hospitals associated with major medical schools are likely to be among the best.

However, the system is designed so that the amount of judgment that radiologist has to exercise is limited primarily to deciding the amount of radiation to deliver to the identified cancer areas. The computer program does the rest. So, the amount of technical skill should be well within the competency of any trained radiation oncologist.

You can find CK locations at Accuray's (the mfger's) website: http://www.accuray.com/CyberKnifeCenters/index.aspx. You can also discuss CK w/doctors, patients and others interested in CK on Accuray's Patient Forum at: http://www.cyberknife.com/ForumLanding.aspx.

Good luck!!!

hopeful and opt...
Posts: 1278
Joined: Apr 2009

When you say "3 perineural invasions", how was this determined and what does it mean? Are you saying that the cancer is outside the prostate?.....have you had an MRI with a Spectroscopy?

Cyberknife.......I am definitely not an expert about this treatment option....there are others such as SwingShiftWorker and Kongo who have been treated and know a lot more about this treatment than I do, ...anyway, as I understand Cyberknife is very precise, and excellent for a small tumor; not a larger one....

VascodaGama's picture
VascodaGama
Posts: 1504
Joined: Nov 2010

Robert

It seems to me that you are on the right direction. I see from your writings that you are well informed about your case and close to a decision. The opinions from us as laymen are purely informative and you may need to dig deeper to get that “Best” you are looking for.

The percentage of cancer on the left side indicates a voluminous tumour which may justify the high PSA, the “3 perineural invasions” (PNI) is the point in need of conclusive information. The presence of PNI makes Gleason score an important piece of data to establish your real status. Hopefully you will get that from Hopkins.

As you know, surgery or radiation is successful if the cancer is classified “contained” (within the prostate). Otherwise you would risk recurrence and the need for a Salvage Treatment.

Perineural invasion is not negatively related to such classification as many of us think. In a study with a follow up of 12 years, it was found that in T1 and T2 men with a Gleason score of less than 6, the problematic perineural invasion is a “…less significant prognostic factor for men with TRULY localized disease….”
The study was done in patients subjected to radical prostatectomy therefore based on data from prognosis and then verified as extraprostatic extension (not contained tumor).

Here is the article with rates and the possibilities related to PNI vz Extra-capsular extension;
http://prostatecancerinfolink.net/2010/06/23/the-prognostic-implications-of-perineural-invasion-at-the-time-of-surgery/

As Bronx above, I had surgery with no complications at all (erections at 3 o’clock mark). My case was in worse shape than yours with a diagnosis of PSA = 24.2, Gs 2+3=5, 6x6 positive cores, negative PNI and negative extra capsular extension (T2c); but it came as positive margins, pT3apN0. I had Salvage RT in 2006 and have no problems too (slight loosed sensation when passing stool but continent).

The side effects as you may have read are common in radical treatments. Long-term side effects could be due to permanent damage caused at the time of treatment or from late “arrivals”. Radiation is known to cause problems in the long range but there is no follow-up to quantify those side effects. Usually rates are related to short-term side effects (10 years), and biochemical survival free percentages.
Surgery is shown to be “friendly” in both respects but the comparison is biased because of the nasty effects from old types of delivering radiation (2000). CyberKnife (CK) treatment had its latest results (http://csn.cancer.org/node/209781) pooled recently at 5 year mark with improved rates but as Swing says above, this modality is proper for low risk (contained) cases. Another much resent research shows proton (the golden way of delivering radiation) treatment success rate at the ten year mark of 92.9% for low risk T1 & T2 patients treated with a combined photon/proton dose very close to 80 Gy.
(http://www.ncbi.nlm.nih.gov/pubmed/20124169).
IMRT alone or a combination of HDR bracky with IMRT will give a chance in cases of extraprostatic extension.

The common test to verify possible extraprostatic extensions seems to be an endorectal-MRI (http://www.medpagetoday.com/Radiology/DiagnosticRadiology/8845). However there is a newer test more precise named USPIO MRI which has been successful in diagnosing metastasis to lymph nodes at the iliac and the sides and base of the prostate (pudendal plexus and vesical plexus).
http://www.european-hospital.com/en/article/3600-Radiation_treatment_decisions_in_patients_with_prostate_cancer_and_suspected_lymph_node_metastasis_based_on_USPIO-MRI.html.

You can read at this site related to SPIO test under the title “Part 1: MRI of Prostate Cancer”; http://books.google.com/books?id=ILQ9h1OaCzwC&pg=PA157&lpg=PA157&dq=USPIO+MRI+prostate+cancer&source=bl&ots=iMxKdD-wfw&sig=dXtHwRfVfZNKNpVcJazn2N5TSMY&hl=en&ei=X9a7Tcj5M8uFhQfM9qTNBQ&sa=X&oi=book_result&ct=result&resnum=3&ved=0CCkQ6AEwAg#v=onepage&q=USPIO%20MRI%20prostate%20cancer&f=false

I think that you should read books about Prostate Cancer from both, Surgeons and Radiologists. A good book from a famous oncologist Dr. Charles Myers (Beating Prostate Cancer) looks into the treatment with less radical approaches based on hormonal treatment and diet. He is a “fan” of radiotherapy with adjuvant HT.

Hope these insights are of help to you.

Wishing you the best.
VGama

robert1
Posts: 82
Joined: Apr 2011

So far two sets of Urologists have suggested my PC is most likely contained, but one doctor (Winston Barzell) suggested I may want to have a bone scan. I'll call to schedule this test tomorrow.

The links, coments and experience you shared with me are amazing. I have some homework to do.

Thank you!

hopeful and opt...
Posts: 1278
Joined: Apr 2009

recommends a bone scan for gleason 8 and above..not under 8 since the likelihood of the cancer spreading to the bone is highly unlikely with less aggressive cancers.....my lay opinion is that there are other more specific tests such as a MRI, or an MRI with a Spectroscopy that concentrate on the prostate and surrounding area to determine lesions that are more appropriate for you.....at major cancer institutions there are Tesla 1.5 and 3.0 MRI machines that give better definition than other MRI machines...if necessary, you can always have a bone scan after this other test

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

Robert,

Welcome to the forum. It looks as if you are already deep into the research which is a very good thing. The more you understand about this disease and your diagnosis, the better equipped you will be to deal with it both medically and emotionally.

The PNI found in your biopsy may not mean much alone but within the context of your overall diagnosis it could be an indicator of extracapusular extension which tends to signal a higher probability of recurrence. PNI is found along the nerves and nerve bundles and is a place where cancer seems to like to grow. Depending on the location, cancer in this location may complicate the success of nerve sparing surgery should you eventually decide to go the RP route. If the urologists you spoke with did not mention this to you, I would circle back and ask them specifically if PNI makes it more difficult to spare the nerves necessary to get and maintain an erection, something I am sure you are interested in preserving based on the high priority you place on QOL.

You may wish to look at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476100/ for a discussion of PNI.

Regarding long term recurrence rates, you are correct in that there is a slight advantage to surgery over radiation. That, however, does not tell the complete story. As I recall, overall 10-year data for BCR in surgical patients is about 35%. In men treated with radiation the percentage of BCR is about 38%. But these numbers do not take into account more modern forms of radiation such as SBRT (CyberKnife) and HDR brachytherapy which show long term absence of biochemical recurrence at above 90%. Five year CyberKnife success was recently shown to be 93%. The older forms of EBRT radiation gave much lower overall dosage and were much less accurate in administering radiation. CyberKnife, for example, delivers a very high relative dose in comparison to the alpha/beta ratio of prostate cancer and its technology enables it to compensate for real time movement of the prostate so that it can deliver sub-millimeter accuracy. If you compare absence of BCR between surgery and SBRT or IMRT without the older EBRT data, radiation has a much higher success rate than surgery in long term absence of BCR.

When you meet with the readiologists in the upcoming weeks, I would ask them to explain this to you in detail so you have an accurate and up-to-date perspective on the long term prospects.

Best of luck to you.

K

robert1
Posts: 82
Joined: Apr 2011

This is exactly the type of information I am craving right now. Thank you!

bdhilton
Posts: 752
Joined: Jan 2010

Robert--

It appears you are on track with the thought process...I too was 54 when I was diagnosed with PCa…I elected to have the open procedure done by one of the best surgeons around (William Catalona out of Northwestern University in Chicago)…I had some “complexities” like you…

It has been 14 months since surgery and I am doing well on all fronts…. The most important thing to remember from my perspective is to select the process you truly believe in and get the best professional to do the procedure… I flew up to Chicago from Atlanta…

All treatments have serious side effects and there is NO MAGIC BULLET that some might want you to believe…but once you make your decision never look back as you will never know what the outcome of any other treatment would had been..

Best to you in your journey

robert1
Posts: 82
Joined: Apr 2011

I really appreciate your comments.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Robert,

I was diagnosed at age 52 with psa of 24 and Gleason 9. Knowing the cancer had spread I knew that surgery was not an option and would have been a waste of time. I had one shot of Lupron to shrink the tumor and then 40 radiation treatments.
Four years later I had a second biopsy and it showed there was no cancer in the prostate. The side effects were virtually non-existent and this is still true today, over 7 years later.
I am now in hospice care and have tumors throughout my body with a lot of pain but I am still able to work two jobs, garden and play golf. For me quality of life was always #1 and by joining hospice itstead of taking chemo and more hormone therapy I have been able to continue my nearly normal life.
Cure rates are not a factor if the cancer has spread because there would be no cure possible. With the advantage of less side effects it seems like radiation would be a better choice for your treatment.
You have to make your own decision about all this and I wish you all the best.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Robert,

I was diagnosed at age 52 with psa of 24 and Gleason 9. Knowing the cancer had spread I knew that surgery was not an option and would have been a waste of time. I had one shot of Lupron to shrink the tumor and then 40 radiation treatments.
Four years later I had a second biopsy and it showed there was no cancer in the prostate. The side effects were virtually non-existent and this is still true today, over 7 years later.
I am now in hospice care and have tumors throughout my body with a lot of pain but I am still able to work two jobs, garden and play golf. For me quality of life was always #1 and by joining hospice itstead of taking chemo and more hormone therapy I have been able to continue my nearly normal life.
Cure rates are not a factor if the cancer has spread because there would be no cure possible. With the advantage of less side effects it seems like radiation would be a better choice for your treatment.
You have to make your own decision about all this and I wish you all the best.

robert1
Posts: 82
Joined: Apr 2011

Just getting the great feedback I did on this site is making me feel more empowered already.

Best wishes to you.

mrspjd
Posts: 688
Joined: Apr 2010

Robert,

Welcome to the PCa forum. Although age is different, my husband's PCa dx stats were similar to yours, with many cores positive at high percentages and PNI identified on biopsy. He finished all txs in January and is doing exceptionally well--working, golfing, skiing, enjoying life. As you probably know by now, the men and women posting on this site will be happy to share their experiences and knowledge.

Best,

mrs pjd

robert1
Posts: 82
Joined: Apr 2011

Thank you mrs pjd:

I really appreciated the feedback. I'm 16 IGRT treatments into a total of 29. This will be followed by seeds. So far, so good.

Yours is a good story. Will you please share some more about your husband's treatment choice and experience.

Kindest regards,

robert1

mrspjd
Posts: 688
Joined: Apr 2010

Robert,

Of course. Thx for asking. I hope you, too, will choose to share add’l info about your PCa journey in regard to some questions I’ve posed to you in another recent thread: http://csn.cancer.org/node/225435

The following is updated from previous posts: Once the shock and reality of PJD’s T3, intermediate/high risk, locally advanced, high volume PCa dx sank in, we each took a deep breath and exhaled slowly (it helped mitigate the stress and anxiety). Then, we began educating ourselves about PCa BEFORE considering or making any tx decisions—a daunting but mandatory task. We needed to know (as accurately as is clinically possible) the extent of cancer in order to evaluate which txs had the lowest rates of BCR (biochemical recurrence), with the fewest side effects, and the best long term successful outcomes for PJD’s stage of PCa.

For us, this process included: finding reputable PCa educational websites, and reading peer reviewed PCa medical papers/journals and books (one good starting place is http://www.prostate-cancer.org/pcricms/node/34); researching clinical study data related to txs for T3 PCa (one source is: http://www.ncbi.nlm.nih.gov/pubmed/); and, attending several different face to face PCa networking groups and personally talking with survivors. We obtained add’l diagnostic testing results to further & more accurately stage PJD’s cancer, including a 2nd opinion biopsy report from a respected pathology lab specializing in analyzing PCa specimens, a CT & bone scan, an E-MRI and a Color Doppler Ultrasound. We scheduled multiple 2nd opinion consults with skilled & experienced specialists in many different PCa tx modalities such as surgery (open & robotic), radiation (all forms), hormones (different drugs and tx time length protocols), and looked at combinations of primary txs. We also consulted with a PCa oncologist who we felt could offer an unbiased assessment of PJD’s case without having a stake in recommending one type of tx over another.

PJD’s stats when FIRST dx’d in Feb 2010 at age 67 were PSA 2.8 (no rapid doubling), G6, and PNI with 9 of 12 cores positive, many containing high percentages of cancer (aka high volume). We were initially told this was T2 stage. A 2nd opinion pathology report from Johns Hopkins lab downgraded (worse) the Gleason to 3+4=7 and confirmed PNI. While CT w/contrast and bone scan were both negative for distant mets, we arranged for add’l imaging tests, including an E-MRI (Tesla 3) and a Color Doppler Ultrasound. Both identified ECE (extra capsular extension) locally to one seminal vesicle. Clinical tumor staging was revised to T3, a higher risk level.

Although PJD was a candidate for surgery with no pre-existing health issues, he elected not to have surgery. We were advised there was a very high likelihood that negative margins would not be attainable from surgery. This same opinion was shared by several different skilled and experienced (open) surgeons at various medical institutions. With the high volume of cancer and greater risk for positive margins post op, as well as for a post-op rising PSA, adjuvant RT (and/or ADT) likely would have been necessary. This was a key factor in PJD’s decision not to have surgery. In other words, he reasoned: why risk all the potential side effects of RP if it, alone, wouldn’t have the best chance of being “curative” (i.e., successful outcome) and, then, why risk compounding potential RP side effects (such as incontinence and/or ED) as a result of Adjuvant RT, since ART or SRT may exacerbate RP side effects.

A close friend of ours opted for permanent seed Brachytherapy, aka, LDR-B (Low Dose Rate Brachy) about 8 years ago. His PCa clinical stage at time of dx was T2. The seeds implanted were Iodine 125 and his doctor was a well known, experienced and skilled RO (radiation oncologist). Several years later he began having problems voiding urine. After multiple related infections, bleeding complications that required hospitalizations, several cystoscopies and a failed TURP (transurethral resection of the prostate) using the Green Light Laser procedure which was supposed to open the urethra by clearing away obstructions & tissue, the urinary retention (different from incontinence) remains a problem and he has a catheter 24/7. Around the same time, our friend was also dx’d with a recurrence, including bone mets. He is now being tx’d with ADT and Xgeva. Our friend’s experience has had a big impact on us. In addition, the restrictions for a time period following LDR Brachy seed implantation (to avoid being in the presence of certain younger age groups who are more vulnerable to radiation exposure) due to the radioactive nature of the seeds, were unacceptable to PJD.

After eliminating surgery and LDR-Brachy/permanent seeds as tx options, we researched and narrowed down the choices, closely examining a combination of primary txs appropriate for T3 PCa. Those txs consisted of triple ADT/HT (Androgen Deprivation Therapy aka Hormone Therapy) to reduce and shrink tumor cell volume; HDR-B (High Dose Rate Brachytherapy--a temporary form of hypofractioned RT--to apply/deliver a high rate radiation dosing “boost” directly into the prostate gland & seminal vesicle; and, IG/IMRT (Image Guided/Intensity Modulated Radiation Therapy) to radiate the prostate bed and local lymph nodes. PJD elected this combination of primary treatments. He selected, and put his trust in, a team of specialists, each recognized as experts for their skill and experience in the tx modalities that he chose.

I need to emphasize that his tx choice was a highly personal decision which was compatible with his goals of being cancer free with the least amount of side effects (long & short term) while maintaining a high QoL (quality of life) and active lifestyle. Research indicated that when ADT and IMRT are used in a neo-adjuvant primary tx approach for T3 PCa, success rates of containment and PCa-free survival were comparable to that of RP alone. (Cancer/tumor volume is a critical factor to be considered here.) Also, recently published clinical studies have concluded that a short-course ADT protocol with IMRT (vs IMRT alone) improved survival rates in locally advanced cases.

Over ten years of study findings for HDR-B tx replicated and validated successful tx outcomes with solid evidence in the tx of intermediate-high risk PCa. Toxicity findings were generally unremarkable. For his stage of cancer, PJD felt HDR-B was the best option to deliver high rate RT dosing directly into the prostate gland and the seminal vesicle. He also believed it would be the most effective and precise way to tx the cancer, since the HDR-B delivery method applied the dosing directly, assuring the full dosing boost and eliminating the potential for missing the target due to any slight prostate movement (or seed migration as may occasionally be the case with LDR-B).

PJD’s HDR-B tx plan required only one overnight stay in the out-patient procedure wing of the medical center where he was tx’d. While a large hospital is attached to this medical institution, his tx did NOT involve a hospital stay or any “long hospital stays or multiple visits.”

The HDR-B and IG/IMRT txs were completed between Sept & Oct 2010. There were few temporary side effects, resolving after a several weeks. No residual toxicity to date. ADT3 was discontinued Jan 2011 after 9 months and was well tolerated. Lab work over the tx course showed a consistent and sharp drop in PSA, Testosterone and DHT. Post tx testing is ongoing and the most recent labs are in line with doctors’ expectations. PSA remains undetectable. It is anticipated that PSA readings will rise and fall within a limited range, ultimately reaching nadir over a period of time.

We are not naïve about the future. Have read and heard many success stories where “everything was done right” but PCa recurred. Unfortunately, this is sometimes the nature of such an insidious disease. IMO, until a "cure" is found, the good news is that new drugs and txs are emerging that will enable PCa recurrence to be treated as chronic disease, much like diabetes is treated today. We are cautiously optimistic and know things could have been worse...we will be forever grateful to the Urologist who found a nodule on DRE, performed the biopsy & dx’d PJD when other physicians missed it.

Long term successful tx outcome and PCa-free survival are the goals of every treatment and everyone on this forum, men and women alike. PJD is doing well, healthy and feeling fine. He has a positive attitude and a ‘glass half full’ philosophy about the future and life in general.

Robert, hope I’ve provided some add’l insight into our PCa journey. Regards to you as well.

mrs pjd

VascodaGama's picture
VascodaGama
Posts: 1504
Joined: Nov 2010

Thanks Mrs for sharing your experiences in PJD’s case. It is complete and well described. Many will benefit from your writings.
To PJD I would like to suggest him to fill that “glass” and celebrate the success. You have chosen well and will do fine and enjoy a long life with your children and their children.

VGama

mrspjd
Posts: 688
Joined: Apr 2010

Thank you, Vasco, for your supportive comments, as well as for the info you share about your own PCa journey. As for the literal interpretation of the “glass ½ full,” PJD & I often enjoy filling our (wine) glasses with our favorite “red” (a Cab from South Africa).

Many wishes for continued success and good health.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Robert, I was 52, psa 24, Gleason 9. Now 60 years, tumors everywhere and taking radiation on tumors for pain control. It has been quite helpful. Currently doing several tumors on ribs. Spine radiation in May.
Since in the beginning the cancer had already spread I had one shot of Lupron to help shrink the tumor, side effects for sure with the hormones. Then had the maximum amount of radiation on prostate. Five years later we re-biopsed the prostate and found zero cancer cells. So as far as killing the cancer cells in prostate it was a total success. My only major side effect was fatigue from the radiation. Surgery was not really a good option for me and since it had spread I am happy that I did not have to have surgery and its side effects. For you things are quite different and I just wanted you to hear about what radiation did for me. I wish you all the best.

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