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I'm confused more than ever

Double Whammy's picture
Double Whammy
Posts: 2303
Joined: Jun 2010

My husband and I met with the urologist yesterday for results of bone scan and we left feeling pretty good, but I still had some unresolved questions.  Here's his status:

Gleason score is 6.  Both sides were positive.  10 cores taken, 5 from each side.  All 5 cores taken from left were positive and 2 of the 5 on right were.  

Bone scan clear. 

Urologist says he's T1c.   On the other hand, he said given my husband's high PSA level (40), that he would bet it's already out of the prostate, probably into lymph nodes.  He also palpated hard areas (not lumps) on DRE .  That and PSA prompted biopsy.

He did not recommend surgery because he said they'd probably find cancer in the nodes and so he'd have to have radiation anyway.  Also did not recommend surgery because of his high PSA - and  said side effects from radiation are less likely than after surgery.  He never mentioned robotic surgery (he doesn't do it) or nerve sparing surgery.  Just that surgery would likely leave him incontinent and impotent and it would be not a good treatment choice for him. 

 I asked about CT or MRI, particularly since he was seemed pretty convinced that cells were already outside the prostate.   He emphatically said scans are not reliable for prostate cancer and there is no "good" test for soft tissue involvement.  Really?  This is primarily where my confusion rests. 

Watchful waiting is not an option because of his high PSA level.  I suggested we repeat it because labs DO make mistakes.  He said he would if we really wanted to, but it wouldn't make any difference because of the biopsy results.  Really?  My husband's PSA went from 3 to 40 in 3 years and the Gleason is only 6 and negative bone scans.  So what's up with that?  He says it doesn't matter.

His recommendation is a consult with radiation oncologist who he said would likely also recommend hormone therapy.  He said the rad onc would explain everything to us.   He was very cavelier IMHO in his statements about side effects from all of the above.  He never said if you do X, you might have Y, and if that happens we can sometimes do Z.   It just felt like "you have prostate cancer.  We need to treat it.  I'm pretty sure it's outside the prostate already, but prostate cancer is slow growing so don't worry, you're almost 70 and won't be around long anyway.  This is the treatment I recommend, now go do it".   He did not say those things, but it felt like he did. 

So, I'm feeling disappointed.  The tx recommendations may well be appropriate, but I just don't feel like we have a complete picture of what's going on with him.

Suzanne

 

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

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

 

 

 

 

BLUEpac6
Posts: 34
Joined: Jun 2012

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. 

VascodaGama's picture
VascodaGama
Posts: 1552
Joined: Nov 2010

Suzanne

I am sorry for the positive result. You are a cancer survivor and know by now how difficult it is to confront the facts and more particularly, to choose a good treatment.
Doctors also do not know exactly the best to assure cure. They follow the standards provided by their associations (AUA, ASTRO, ASCO, AAPM, etc) which were chosen based on the highest rates of success of past experiences. This means that there is a lot of guessing in a decision and what may have worked for some will not assure the same results in others.
The age and the status of a patient also weigh in their recommendations. The NCCN guide lines for PCa treatments, apart of the traditional markers like PSA and clinical status, uses the Life Expectancy scales to recommend treatments.

You may be interested in reading these links to NCCN guidelines and to a scale for LE;

http://www.nccn.org/patients/guidelines/prostate/index.html

http://www.bankrate.com/calculators/retirement/life-age-expectancy-calculator.aspx

http://www.death-clock.org/

By the info you share here, I think your doctor is giving your husband proper advice. In my opinion surgery is not a valid curative treatment when cancer is not totally contained in the prostate gland. Dissecting the gland would not solve the problem. It would only treat the wound.
In confirmed spread cases surgery is used with bulking intent. It dissects the bulk of the cancer but that does not assure any extension in life or possibility at cure. Radiation will be needed as a salvage treatment and the side effects and risks of the therapies will be greater.
Why chose surgery instead of radiation from the very beginning?

You may not know but at present times Radiation therapy applied as prime treatment for prostate cancer that has spread, got higher rates of success in cure than surgery.

The problem in your husband’s case is to confirm the existing spread. This is what the many suggested in your previous thread :http://csn.cancer.org/node/263159
In typical cases of low Gleason score in voluminous cancer diagnosis are linked to micrometastases. This is a condition when cancer is widely spread forming tinny colonies that are difficult of being detected by traditional CT or MRI image studies.
The doctor probably is judging the above so that he is not recommending the tests. However, you could request to have an image study done with the newer methodology using C11 contrast agents in the combo of a PET/MRI scanning which has shown improved results in detecting cancer in soft tissue. Surely you will have to give time for clearing off the blood spread in the biopsy. There are many reports about the functionality of PET/CT or MRI in the net. I think that in a micrometastases case a 3-Tesla MRI will have better chances to detect anything. You would need to “shop” for a place with such facilities (C11 PET/MRI-3T). Read this;

http://gucasym.org/utility-c-11-choline-petct-prostate-cancer-improving-detection-locoregional-and-metastatic-disease

Proper diagnosis will lead to proper decisions on a treatment and to better outcomes.  Innocent

A note on your doctor’s findings;

7 positive cores out of 10 with positive DRE (palpated hard areas) is indicative of voluminous cancer. The PSA of 40 is very high and confirms spread in most of past experiences; however, high PSA could also be a cause of existing BPH so that the case could be judged as contained. I wonder what the pathologist has written about his findings in the biopsy.
What is the size of the prostate gland?
The T1c clinical stage is ambiguous if your doctor believes in spread. T1c is the stage attribute to cases of “
Cancer is found by needle biopsy done because of an elevated PSA“. This is at the moment the only available data, together with a negative traditional bone scan. But if spread is confirmed with an image study, then the clinical stage would become T3.
http://www.psa-rising.com/prostatecancer/staging.htm

Open or robot surgeries are valid treatments in contained cases. When available data is limited, good surgeons will start the operation by dissecting firstly a few numbers of lymph nodes that they send for analyses at the hospital laboratory, while waiting at the operating theatre/room. If they find positive nodes then they abort the operation and leave the gland in place. They do this because the purposes of the treatment could not be assured. The patient is then recommended to follow with radiation therapy.
In cases where proper initial diagnosis were obtained (or thought to be existent) surgeons will operate fully. They do not take time in judging the “work” done by his colleague who did the diagnosis.

In robot assisted operations lymph nodes are not typically dissected due to restrictions of access by the robot arm. This is a type of operation chosen because it does not involve much cutting to avoid blood spread and assure short periods of recovery. Patients go home in a matter of 24 hours while in open types they stay at the hospital on average 5 days.

I would say that robot surgeries can assure better outcomes if preceded by well established diagnosis. However, there are reports of more cases of incontinence in robot than in open surgeries.

I would advise you to take time before committing to anything. Get second opinions from several specialists in all trades (RP, RT, HT, etc). You can request a second opinion on the biopsy slides at Johns Hopkins, where you can also get opinions on treatments. In any case, a proper image study is still missing.

Research the net about the side effects and the risks. Your husband is at risk of not fathering a child again.  Frown

Best wishes and luck in your journeys.

VGama  Wink

Double Whammy's picture
Double Whammy
Posts: 2303
Joined: Jun 2010

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

SeattleJ
Posts: 32
Joined: Mar 2011

Hi Suzanne,

My wife and I are both cancer survivors (breast & prostate) and were both treated at a major cancer center. The one statement you made that concerned me was the fact that your husband is being treated in a small community setting. While good care can be found in those places and they are comfortable, it can be statisticaly shown that those treated in highly rated cancer centers generally have better results. I would really encourage your husband to get a 2nd opinion at a specialized cancer facility.

Good luck to you both

John

mrspjd
Posts: 693
Joined: Apr 2010

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

Double Whammy's picture
Double Whammy
Posts: 2303
Joined: Jun 2010

I'm going through my being annoyed phase.  Part of this is with my husband who seems to want to play a passive role and just do what he was told to do (which may well be the right thing). 

Monday we will go sign a release to get a copy of the pathology report.  My husband just didn't feel like dealing with it last week and now it's a week later and we haven't gone to do it because he's "been busy".  That annoys me.   I asked for a copy at the appointment and was told we had to go to some other office and sign a release form.  For my cancer, all I have to do is ask and they print me out a copy or hand me the one they've got in their hand.  I get all of my follow up reports online before I even talk to the MD.  I'm used to this type of communication. 

I will call our health insurance company Monday and ask about what we have to do to get a second opinion.  I hope he will agree to do that.  He feels that the radiation oncology visit will be a second opinion, and we do intend to ask a lot of questions, but I see it as being sent for treatment as ordered by the urologist (again, this is probably appropriate).  We do not have an appointment for that referral yet. 

I just have some nagging unanswered questions, all of which you each have addressed.  I am not advocating for surgery vs. radiation or anything for that matter.  I am questioning some things that I feel are ambiguous (T1c, vs "outside the prostate").  Admittedly, I don't understand a lot about prostate cancer, but I understand enough to want to be sure he has the appropriate treatment for him.   Stay tuned.  I hope to get over being annoyed in the not so distant future.

Suzanne 

Trew
Posts: 892
Joined: Jan 2010

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.

 

 

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