I'm confused more than ever

lewvino said:

I believe the only way to

I believe the only way to tell for sure if the Cancer has reached the lymph nodes if by having surgery. They of course remove the prostate, seminal vesicules and some lymph nodes and send to the pathologist. That is really the only method I know of for geeting an accurate understanding.

Yes there is a chance that following surgery your husband may need radiation but that is a quess right now.

I personally would get a second opinion from a highly respected Urologist. Not all instances of surgery are going to leave your husband incontinent and impotent. I was Gleason 7 and had davinci robotic at Vanderbilt four years ago. I consider myself 99% dry with small dribbles from time to time. Nothing major and use no pads. I've just finished radiation last week due to a positive margin found post surgery and my psa started climbing slowly to .3. So far Levitra does the job for me.

The higher PSA is of course of concern. Did the doctor put your husband on a round of antibiotics before the testing to rule out an infection?

Lewvino age 59

 

 

 

 

In jan.2009 I found out my psa was 110 biopsy gleason 9 robotic surgeon would not even talk to me said out of prostrate.Uncologist said he would put seeds in and do radiaton. I had to have a homone shot and wait 90 days to begin this procedure which was scheduled for aug. 2009. Ihad a bone scan whish was neg. In the mean time I decided to go cancer treatment centr of america in okl. for asecond opinion.They did a mri and cat scan which showed hump uot of the prostrate and said surgery would be to dangerous.So Iwas left thinking radiation was All was left.A friend of mine whose daddy died with prostrate cancer in the 70s was telling his urolgist about me called me and said my prostrate needed to come out because if cancer did return I could then have radiaton and a chance for cure but If ihad radiation and cancer returned hormone therapy is all thats left and is not acure. He put me in touch with Dr. Seth Lerner at Baylor clinic in Houston and after looking at all my test results he said he would operate.After opening me up he first did biopsy on lymph nodes on right side then onleft side which came back negativeand he removed the prostrate,Ireally experienced no pain from operation and took no pain pills.This was in 2009.BY2011 my psa had creeped up to .06 and was told I needed salvage radiation which I took injune 2011 and had noill effects from it and really never felt like I was recieving radiation.As of Aug.2013 my psa was .01 and am feeling great.Two diferent uncolgist I went to did say after putting all my informatio in acomputer if cancer did return it would take 6 years.Ido have some minor incotinence when exerting myself and am basically impotent only trying pills whicc did not seem to work.Acording to doctors when all this stared it was agressive carcinoma and wasnot given awhole lot of encouragement.I believe prayers by churches and friends got me this far.Evrybodies case is differnt and every doctors opinion is diferent.I pray your huband does fine.I know how hard it is to make the right decsion and to this day I still worry. I did not mention I am now 67 years old. 

Double Whammy said:

Wow

Thank you for your thoughtful and thorough responses.  Most of this I understand as I am a cancer survivor (breast and endometrial), on hormone therapy for breast cancer, had chemo and radiation, and had robotic surgery for my hysterectomy,  I am all too familiar with the side effects of having no ovaries AND being on estrogen therapy even though I'm a postmenopausal woman and had experienced many of the SEs through natural menopause.  I can't imagine my husband going through similar experiences if not necessary.   I did exhausting research during my cancer experience (only one experience actually, but 2 primary cancers) and am a little annoyed that my husband seems willing to just go with what is recommended - which may be appropriate. I just feel that we have incomplete information and I don't like not knowing everything.  My cancers were surgically staged and it felt like we knew all the facts that could be known.  I was also treated at an academic medical center and this urologist practices in a small community setting.  Admittedly, I'm biased about my health care team and that cancer center has folks who specialize in prostate cancer.  I feel my husband's diagnosis is not as clear as mine was and that makes me uncomfortable.   

Lots to think about, that's for sure.  I appreciate the feedback.

Suzanne

Hello Suzanne,

From one wife to another, please accept a belated welcome to the PCa forum. Having been in your shoes, I understand all too well the feelings of confusion and frustration that you're going through. Your personal experience with cancer will no doubt be an important asset to your husband in navigating the medical system. In fact your perception of the urologist and dissatisfaction with his cavalier attitude seems well founded. “It doesn’t matter” is not a valid answer to your questions. It may not matter to the doctor because he’s not the one with PCa, but it matters to you. You deserve real answers from knowledgeable and experienced medical experts.  I hope your husband agrees and understands that it’s in his best interest to overcome his complacency and learn as much as possible about his PCa before he makes any decisions or begins any tx.

IMHO, you have been misinformed on several accounts and may have reason to be concerned. Your husband is not a T1, not if cancer was found in both lobes and a nodule/firmness was found on DRE and specifically, not if the urologist "bets" (huh?) the cancer is locally or distally advanced (outside the prostate). With PCa, all “bets” are off and nothing about PCa is ever “routine” (not Bx results, tests, txs, etc.)   Some Bx stats are missing from your post, including % of tumor in each positive core, prostate volume, and whether or not PNI (perineural invasion) was identified. You may need to request a copy of the Bx report from the uro if you don’t already have one. This report is important because right now it’s the only tangible PCa info you have, yet the Tumor staging is unclear (based on the fuzzy info the uro gave you).

After my husband’s Bx and PCa dx, we needed to clarify his tumor stage in order to better understand his clinical PCa risk (intermediate - high).  We obtained an expert 2nd opinion on the prostate Bx cores. It was easy for PJD to make arrangements for his Bx core slides to be sent to an expert pathologist/path lab that specializes in analyzing prostate Bx tissue.  Local labs review all types of Bx tissue, but there are only a handful of respected PCa pathologists/path labs that almost exclusively review prostate Bx specimens. Dr. Epstein @ Johns Hopkins is one of them. The expert 2nd opinion Bx path report will either confirm or re-grade (up or down) the G scores, percentages of each positive core, etc. PJD’s 2nd opinion path lab report revised his G6 to G7 and confirmed PNI. Not the news we had hoped for, but it prompted us to obtain add’l imaging tests, since conventional imaging (bone scan and pelvic CT) were negative.  A Color Doppler Ultrasound (CDU) and a 3Tesla EMRI were necessary and contributed to a more accurate clinical assessment. His Tumor stage went from T2 to T3. Again, not what we had hoped for, but the info helped us to better evaluate primary tx options/protocols that had the best chance of cure with the fewest short/long term side effects (risk vs benefit for successful outcome). Modern diagnostic imaging technology is not 100% accurate 100% of the time, and it cannot detect micrometastasis. However, advanced imaging may be a valuable tool in confirming local locally advanced disease when ExtraCapsular Extension (ECE) is likely.

Armed with more accurate staging info, we consulted with different tx specialists for 2nd opinions and, we replaced the urologist with an independent MO who specialized in PCa. He provided an unbiased assessment of PJD’s case, risk level and we discussed viable tx protocols. The PCa onc was current on the latest PCa clinical studies, imaging modalities, lab tests, ADT drugs/protocols, & PCa txs, including those that might not be available/offered at the local hospital or medical facility. State of the art PCa MDs, medical equipment & technology are often found at large teaching hospitals and medical centers of excellence. SeattleJ has already emphasized this important point.

Your husband may wish to take another PSA test to monitor/verify the previous PSA result. Along with PSA, he can request that the lab order includes a check of testosterone and DHT levels to establish baseline readings. Avoidance of certain activities (i.e. orgasm, bike riding, etc.) and DRE within 48-72 hours of a PSA test is advisable as they can stimulate the prostate to produce more PSA, resulting in a small but increased PSA reading.

Resecting and debulking the prostate tumor (RP) is often not advised if mets are outside the prostate. In those cases, RP alone is not curative and add’l txs are required which may compound and exacerbate primary RP tx side effects, sometimes becoming permanent. Instead, RT as a primary tx, with ADT, is usually recommended. There are various forms of RT and ADT drug protocols, so it’s important to research and evaluate txs based on personal QoL priorities.

If you'd like to chat, feel free to contact me via CSN. I’d be happy to try to answer any PCa questions you may have.

All the very best to you and your husband.

mrs pjd
wife of a T3 stage PCa survivor

DW, radiation has problems, too.  Sometimes incontinency, ED, loose stools are some. 

I would be looking at a 2nd opinion, which I did when I was where you and hubby are now.

I went with the 2nd doctor, and then went to a 3rd after surgery and radiation.