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pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 8/3/2010 12:33 AM (GMT -6)   
My husband was diagnosed on 7/22/10. The pathology report:

Ten samples - results as follows:

Right base - Gleason 3+3=6 - no perineural invasion identified
Right mid & right apex - benign
Right anterior horn (2 core) - Gleason 3+4=7 - no perineural invasion identified
Left base - Gleason 3+4=7 - no perineural invasion identified
Left mid & left apex - benign
Left Anterior horn (2 core) - Gleason 4+3=7 - perineural invasion is identified

I posted a much longer introduction at the other prostate forum and I don't want to repost it here. But for anyone who is interested, here is the link:

http://www.cancerforums.net/threads/13910-Husband-newly-diagnosed-amp-a-couple-of-pathology-report-questions

My question on that post about the percentages listed on many pathology reports didn't get answered - so I thought I'd ask it here. My husband's report didn't mention anything about percentages. Is that a common assessment and how important is it? There was nothing about "free PSA" either - but I've seen that mentioned here quite often also.

We've just started telling people about the diagnosis and already we have been told - "Oh, that's the best kind of cancer." It is hard facing this again - even if it is the "best kind of cancer". Feelings from the last time he had cancer (which coincided with our then 17 year old son's ameloblastoma) are flooding back. They both had grueling treatment(s) (our son's had 15 surgeries in 5 years) and after 7 1/2 years both were cancer free....or so we thought.

I've been reading this forum for a few days and learning a lot. As with his colon cancer, my husband wants me to be the one to research and bring him the synopsis! I'm more than willing to do this but the potential after effects of this cancer are daunting. It's pretty disturbing. I think incontinence is what my husband fears more than ED - I can live with both, I just want him to survive and grow old with me.

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 8/3/2010 4:21 AM (GMT -6)   
Hi Pipedream,

Welcome to this forum, although I am sure you never really wanted to be here, given that your husband has PC it is a good place to be. I have just been through your thread on the other forum - your family sure has been through a lot.

If you are doing the research for your husband, a good tip I heard here was to get your hands on all the test reports including psa tests, biopsy tests, and other tests you may do in the future. This takes the guesswork out and allows you to be confident in the numbers and the details of your husband's diagnoses.

The percentages on most biopsy reports relate to the percentage of the individual cores that have cancer. So, for example, the core from your husbands left base has 3+4=7. But is the cancer right through the core, or is the cancer only on a tiny portion of the core? This is the question that the percentages answers and it is useful because it gives you some information on the extent of the cancer. I think it would be unusual not to have these percentages on the pathology report. As a matter of course it is suggested by many here that the biopsy slides should get re-examined by a lab that is very experienced with Protate Cancer. Do you live in the US, if so Bostwick is a good lab from what I hear.

Low free PSAs suggest cancer and high free PSAs suggest a benign condition called BPH. This test is particularly useful pre-biopsy, it would have been good to do this test last year when trying to decide between watchful waiting and the biopsy. I think it has limited use post-biopsy once the cancer has been found.

If you are going for surgery, open or davinci, the most important thing is to find a surgeon who has done 500+ surgeries and is recommended by his past patients. The surgery is very complex and the skill and experience of the surgeon has a large bearing on the outcome. Take your time in finding the best surgeon you can.

The only other suggestion I have is to ask a lot of questions. People here know a lot. They have been through what you and your husband have gone through.

Best wishes,
An
Husband's age: 52. We live in Sydney Australia.

In 2007 my husbands PSA level was 2.5.
In Feb 2008 it was 1.7
In Oct 2009 it was 3.67 with a free PSA ratio of 27
In Feb 2010 it was 4.03 with a free PSA ratio of 31.
In June 2010 it was 2.69

DRE normal.
Biopsy 28/4/2010: results, negative for a diagnosis of PC however 3 focal ASAPs on left side of prostate at base, apex and at transition resulting in the conclusion "...small acinar proliferation is suspicious but not diagnostic for prostatic adenocarcinoma."
Review of biopsy by experienced pathologist, results,
1 out of 12 core diagnosed with 10% of Gleason score 3+3 cancer (left transitional)
1 out of 12 cores with ASAP (left apex), suspicious but not diagnostic of cancer

Next steps: Nerve sparing RP on 20th August 2010.

My husband's maternal grandfather died of prostate cancer at 72. His maternal uncle died of prostate cancer at 60. Because he is the third generation to be diagnosed he has hereditary PC.

Post Edited (An38) : 8/3/2010 7:34:18 AM (GMT-6)


daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 8/3/2010 7:33 AM (GMT -6)   
Sorry you have to be here but you are very welcome. This is a great group with many experienced individuals who are happy to share their experience.

Welcome
Dave in Durango CO
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04 06-07-10 PSA <0.04
05-03-10 1 week without pads

rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 8/3/2010 7:59 AM (GMT -6)   
Hi Pipedream,

I read your thread on the other forum and was glad to see that you are reading Dr. Walsh's book-it really helped me. An did a good job of answering some of your questions and I agree with her 100% about finding an experienced doctor. My husband's surgery is next Monday, so I'm certainly no expert on the other side of surgery, but I do believe that the chance of side effects can be minimized with the right surgeon-at least, I hope so-if not, we'll deal with it. Welcome to the forum-it's always nice to have another wife here.

Renee
Husband diagnosed 3/10
Age 56, PSA 4.7, free 7.6%
Biopsy 5 of 10 cores positve-all right side-25% to 57%
Gleason 6
DaVinci surgery with Dr. Vip Patel scheduled 8/9/10
 

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/3/2010 8:06 AM (GMT -6)   
Since this is a one time choice for a new patient to consider. Look at everything, weigh everything, question everything even from 'experts', get second opinion(s) from non-related less biased sources for your education, comparison and knowing what goes on in the real world of medical practices (could be a revelation you couldn't gather from reading a book). Read and study everything and get prepared for the decision of a lifetime...because it could boil down to just that. Get your fast track education and diploma here: (impress your husband with your understanding on this)
www.yananow.net
www.prostate-help.org
www.hypertext.org
www.ustoo.org
www.prostatepointers.org or www.prostate-pointers.org

You can find answers to specific questions herein from others whom have done this or that for comparison and contrasts. All sources should be weighed to make your own decision(s).
Youth is wasted on the Young-(W.C. Fields)

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 8/3/2010 8:28 AM (GMT -6)   
Hello Pipedream,
Wow you have been thru a lot with cancer so hopefuly you have a good support system around you. An gave you some great advise and educate yourself and help your husband educate himself as well. The incontinence is often a side effect, but more often than not a short term side effect. And you just might tell people that there is "no best kind of cancer." Take care and keep us posted.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7087
   Posted 8/3/2010 8:57 AM (GMT -6)   
Pipedream,

Welcome, and as is always the case here, we're sorry you have reason to join us.

Something no one mentioned in the discussion of "Free PSA" - that is a separate test that you have to ask for apart from the standard PSA. My GP ran one immediately after the standard PSA came back high, as he knew that was a cost I would accept.

I get really upset with the "good cancer" comment. Being on the bad side of the ED and incontinence "side effects" after DaVinci and IGRT, they are not short term, and they really do reduce one's quality of life.

6 out of 10 cores positive, and some Gleason 4+3 is not a very good biopsy, which I'm sure you've been told. I'm a bit surprised there is no mention of them (percentages) in the biopsy report (each core on my Bostwick report included a phrase "involving nn% of the specimen). There was also a diagram showing the sites of the cores, that included the %. As others have mentioned, an opinion from Bostwick would be a good option.

Post Edited (142) : 8/3/2010 8:15:31 AM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 8/3/2010 8:59 AM (GMT -6)   
I think maybe you should just take a big deep breath, and relax a little. Until you meet with your doctor, and get a firm diagnosis, prognosis, and a recommended treatment plan, it is possible to work yourselves into a lather that may not be required. You may be able to go 6 months or a year depending on the diagnosis without doing anything, called AS or active survelliance.

On these sites, you generally see some of the worst case scenarios that can cause great anxiety. Of course reading a book is good, but this is not like a heart blockage or some other diagnosis that requires emergency surgery. You have time.

So, take a deep breath, take off for a weekend , and enjoy each other. Don't get too primed up until you know what the deal is.

Good luck and welcome to HW.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7087
   Posted 8/3/2010 9:13 AM (GMT -6)   
Pipedream,
I went over to the other site you mentioned - not one I've visited. I noticed the comments on 2 vs. 6 week recovery time. I (not being a medical professional) would take that with a grain of salt.
My uro / surgeon quoted an expected down-time (away from work) of 5-7 weeks regardless of procedure. The two procedures are very different in the way of getting to the prostate, but the internal impact is pretty much the same. The difference pointed out to me was potential blood loss, and incision healing time. He does DaVinci, and others in his practice do open, so it was my choice.
At two weeks after DaVinci I could not have done any physical work.
More important to me is the skill of the doctor in minimizing incontinence issues, as that will count long after the 2 or 6 or 20 weeks of recovery is past and forgotten.

Post Edited (142) : 8/3/2010 8:17:07 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/3/2010 10:03 AM (GMT -6)   
Hello and welcome Pipe Dream,

Only ignorance says "its a good kind of cancer". So ignore remarks like that. There is no good cancer, and I am speaking first handt

It's important to know about the % of cancer in those cores. And with it being a confirmed Gleason 7 diagnosis, your husband will need treatment for sure, but even having said that, you have time to weigh out all the options.

I had open surgery, as some others here. Lots of guys did the robotic surgery route, we have a few that went the "Seeding" route of radiation quite well. So there is a lot of experience with what primary treatment to consider.

I agree with the others, its more about the experience of the doctor/surgeon then any other factor.

Never been to the other site you mentioned, so I have no opinion of that.

Good luck, and keep us posted, a few more details on his biopsy would help to understand things better.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19

pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 8/3/2010 10:26 AM (GMT -6)   
Thank you all so much for the welcome. And information. Wow - this really is a more active group than the other forum.

Just to respond to some of the comments -

It was "implied" that the biopsy isn't real good but nothing overt was said. "The surgeon 'may' not be able to spare the nerves, the location of the cancer is near the outside of the prostate gland which 'sometimes' means it has penetrated the walls, etc...." Having been through cancer a couple of times before, my ears are particularly sensitive to these types of statements. First time through, you naively assume the best (as when we were told for our son, "it is probably just a cyst....but it is possible it is something more serious....do not go home and look it up on the internet".....of course, you know what I did immediately.)

We regret we didn't opt for the biopsy a year ago when we were told it would be OK to have one done - or OK to wait 6 months for a retest. When the retest had his PSA down to 1.5 again, we were sure we had made the right decision. Even when 6 months later the PSA was 4.2, we were told it was not unusual for PSA to bounce around and have nothing wrong. So we can't do anything other than go from here but maybe a year ago it would have been found at a lower Gleason score. The urologist does not think "watch and wait" is advisable at this point and he said nothing other than a radical prostatectomy is appropriate.

However, he is sending us to Pittsburgh (we live in rural central PA) to consult with a surgeon (Ralph J. Miller, Jr with Triangle Urological Group) who was or is listed in the top doctors in the country for this surgery and with a radiation oncologist. We are taking the CD's with the MRI, CT scan, and the slides with us - they will all be gone over again to see if they agree with the pathologist and doctors here. That is scheduled for August 11th - so I have to cram in a lot of research, reading, etc between now and then. After being given two names, we asked our urologist who he would go to if it was him or his father/brother and Dr. Miller was who he said he would go to. We've since heard very good things from two other sources about Dr. Miller. So I have reasonable confidence this second opinion assessment and appointment is a good place to start. Believe me, we will be prepared with a list of questions.

When I asked about HIFU, the urologist said he had just come from a urology conference and it was not getting good reviews there....in fact, as a joke, making the rounds among the docs there was the statement that HIFU stands for "High Income For Urologists".

As for the recovery time - that is one of our most urgent concerns as my husband is a self-employed attorney in solo practice and with his current caseload and court schedule even two weeks off will be difficult. The irony is that he has felt better in the last two or three years than he had in a decade and so had ratcheted up his practice to much more than full time - attempting to speed up our financial recovery from the medical bills and debt we had incurred during his and our son's illnesses. After his colon cancer surgery he was back in the office before two full weeks were up....but only a few hours a day at first then gradually increasing as he felt better. He never missed a full day of work during chemo or radiation - though of course he had to take time off for the treatments. By the end of chemo he looked and felt like death warmed over . So back to work for him means going into the office (5 blocks from home) and sitting at his desk meeting with clients, doing paperwork, etc....doesn't require heavy physical work - but he does fear the possible bathroom complications if incontinence is severe and/or lasts very long.

He did read the thread entitled "Prostate Cancer: The Really Useful List made by HW people for HW people." after I found it. That thread definitely shocked and sobered us and started us thinking that robotic surgery is not going to be a "walk in the park"....and then back to normal in two weeks. We were also told he might not be a candidate for robotic because his colon surgery being the beginning of the ascending colon was very close to the prostate - there may too much scar tissue to allow for anything except open abdomen.

Thanks again for the welcome....I don't feel so alone now. I guess my last question of those veterans who are here, based on the information we have been given, in your opinion and experience does our best (maybe only) option for a cure boil down to radical prostatectomy?

I am glad to see other wives participate here too - though I wish none of us needed to be here.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 8/3/2010 10:47 AM (GMT -6)   
I think you will need to consider Brachytherapy as a treatment option, althio it could be affected by previous radiation treatments. It has few initial side effects, and a low percentage chance of ED after a couple of years.

We have men here who went golfing shortly after the procedure.

The advantage to surgery is the ability to definitively examine the removed prostate and determine if further treatment is required. But there are initial side effects which are not fun.

Becasue of my agressive cancer, I had surgery. Because I had a catheter for 2 weeks, I didn't do a lot at work, altho I did put in an appearance from time to time. After the catheter was removed, I went back to work with no problems. I have an active job which requires climbing ladders, etc.

The incontinence was inconvenient, but with pads, etc., it is not a show stopper. Mine lasted for 8 months, but didn't hold me back. I went hiking and hunting, and did most everything Iwanted to do.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 8/3/2010 11:00 AM (GMT -6)   
Be happy to help you with any questions regarding open surgery if that is the chosen path. For most men, there isn't any 2 week recovery with open surgery. I was in the hospital for 4 full days, and the first 3 weeks at home were tough. Of coure this would vary much man by man. My surgeon said in reality, it would take up to a full year to feel totally recovered. Unfortunately, I have had endless complications that most men aren't dealing with, which has hindered a full recovery for me. The robotic surgery is less invasive on paper, but it is still the same complex surgery as open, some guys here bounce back fast from robotic, others don't, just too many variables. WIth what you husband has been to prior, it might very well impact some of his treatment choices and recovery times. Any Gleason 7 case is too worrisome to even remotely consider "watching", as the true mix of type 4 cancer cells can be problematic as to their aggressiveness. If he was deemed a good candidate for "seeding", it would be the least invasive primary choice for him. we have several men here that have done that and done well by it
Age: 58, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one: Aug 3
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, Cath #18 - 13 days, Cath #19 - 17 days, Total Blockage, Cath # 20 - 7/19

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/3/2010 11:00 AM (GMT -6)   
Objectively that answer is no.
You can expect a huge debate on such.
Youth is wasted on the Young-(W.C. Fields)

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 8/3/2010 11:09 AM (GMT -6)   
Hi Pipedream,
 
Welcome to our little corner of the world. Sorry that you have to be here, but...........................
I too had the open RP to remove the "good" cancer and had little trouble with the recovery, so don't worry if hubby has to take that route. Recovery takes marginally longer than the robotic, but outcomes are very similar. In any case, you are not alone. There are many members here that are very knowledgeable and all are willing to help in any way they can. Please stay in touch and ask any questions you may have. 
Best of luck on your journey in whatever decision you make.
 
Mag

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 days - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09 <0.04; JAN 10 <0.04; Jul 10 <.04

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 8/3/2010 1:54 PM (GMT -6)   
Hello Pipe. If you want another option on treatment options, you might consider a trip to Johns Hopkins. Baltimore is not too far from central PA -- depending on where in central PA you are located -- and Johns Hopkins has a very good reputation in urologic oncology. Among other things, they have a reputation for turning down surgery cases where they believe surgery is not the best approach -- so you are likely to get an honest opinion from a competent expert.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7087
   Posted 8/3/2010 2:13 PM (GMT -6)   
Pipedream,
As to "back to work" - I could work remotely with a connection to my office, so being "back to work" happened for a very few hours a day by the time I got home from the hospital.

Going back to the office is a whole different story. He will have a catheter for at least 7 days, I suspect, but some report even several weeks - each is different. That would have been a showstopper for me had I been able to drive.

I was instructed by the Dr. to not drive for over a month - concern about lingering effect of pain killers I had to continue to take and any eventual emergency situation that would require a sudden or strong movement in the torso. That block is based more on state laws that put the pain killers I was on in the category of DUI. Probably all "self-defense", but I could deal with it.

My incontinence has been more extreme than expected (and as was already mentioned, you find some of us here because we are the exception to the good forecasts the doctors push), so that as well kept me from "in person" meetings - I found sitting in wet pads to be distracting, and the periodic leaks to create more of a public scene than I would like.

The last concern for my work was the heavy pain meds - being on them can loosen the lips and negate the normal good sense one should use before a phone call or email. In the evening, I closed the computer, turned off the phone, put the car keys in the safe, then took the pill.

Not being doctors, I don't think you should find any absolutes on treatment here. Most of us have strong opinions driven by our own experience, but as to a primary treatment, you only get one shot, so we can't compare. Even HIFU finds supporters here (I'm not one, but it was ruled out of consideration because of the cost and advanced Gleasons).

And last, yes, PCa sneaks up on you. I had no reason to even imagine I was sick - it was just an annual set of blood work, and a "let's throw in a PSA, I don't see once in your most recent tests" from the nurse. Exactly a year ago - and here I am now knowing more than I'd ever feared about PCa.

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/3/2010 3:23 PM (GMT -6)   
Hi pipedream.

A radical prostatectomy is not your only option. You have lots of options, and good ones. Each has it's merits, and less attractive aspects. When a second read of my biopsy said I had some 4 cells in the mix I opted to accept the worst case scenario as being the real situation and deided to have surgery, rather than HIFU. The reason wasn't that surgery was a better treatment. The reason was that surgery allowed pathology and I knew my mental makeup was such that I needed to know the pathology. Of course, once treatment is completed pathology isn't so important. What's important is the PSA number. But, I thought I needed to know.

As for the comment that HIFU stood for high income for urologists, I'd suggest the real story is that some uros might be mocking HIFU because it represents a huge threat to their high income specialties. A robotic uro surgeon who is also an oncologist (MD Anderson trained) and now with a leading clinic in the U.S. told me that the profession would not be happy with HIFU. "These guys have invested a huge amount of money and years of training learning surgery or radiation. HIFU has the potential to put them out of business fast. Don't expect them to embrace it." HIFU is an outpatient proceedure. You walk in, walk out, go back to work the next day. Another supposed negative about HIFU you'll hear is that it's not an approved treatment in the U.S. which is true. It is worth asking why it would be approved in Canada, for example, and not the U.S. Then, draw your own conclusions. The HIFU doctor I was talking to (not the one mentioned above) was Bill Orovan, also MD Anderson trained, by the way.  His clinic is Maple Leaf HIFU and is part of the Cleveland Clinic Canada in Toronto. You could start by talking to him.

Some here take great exception to being told prostate cancer is the good cancer. I can understand that. It can be awful and reading posts here is ample evidence of that! I'm not much bothered by the comment. Perhaps because, so far, my PSA is zero. If and when it begins to move up I may feel differently. Right now I accept that comment as the natural way some people have of trying to make the best of a bad situation. Also, I have two friends, one diagnosed with ovarian cancer, and one with uterine cancer, at about the same time I learned I had PCa. I'll take the PCa, thank you.

I wish you well and join with the others in welcoming you to HW.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Post Edited (Sleepless09) : 8/3/2010 2:28:58 PM (GMT-6)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 8/3/2010 4:27 PM (GMT -6)   

Pipedream,

You don't have nearly enough information on which to base a decision. Right now you know your husband has a large amount of intermediate risk cancer that needs to be treated and the possibility of nerve involvement.

In order to make a more informed decision you need to know if the cancer is contained, if the nerve is involved and if the tumor is close or at the margin. You also need a 2nd opinion on the biopsy pathology from a pathologist that specializes in PC and also a ploidy analysis from the pathology. Dr Epstien at Hopkins or Dr Boswitch at Bostwich labs can provide this. The proper staging of your PC will dictate the best treatment for it, and without it your doctors are just guessing that surgery will work. Going in blind is the main reason that surgery has a 30% reoccurranc rate.

An MRIS with endorectal coil can give a good indication of nerve involvement and also information on extra capsular extension. If you have either then surgery may not be the best option. Radiation would be a much better choice in these cases. A color doppler ultrasound can also be used instead of an MRIS. In your husband's case I would not choose a treatment until I knew exactly where the tumor was and how agressive it is by confirmation of an expert patholigist.

JohnT

 


64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 8/3/2010 5:41 PM (GMT -6)   
JohnT -- just two comments on your suggestions. First, I do not believe that Dr. Epstein will do a ploidy analysis. There is some debate about whether ploidy analysis is useful or not -- but in any event if Pipe wants a ploidy analysis, I think he will need to get it from someone other than Dr. Epstein. (Possibilities would include Jon Oppenheimer in TN, Helmut Bonkhoff in Germany, or Bostwick Labs in Virginia -- and among these I would not worry too much about geography, since it is all done by mail). Second, I would be less definitive in saying that if one has nerve involvement, radiation is necessarily a "much better choice." I think that is just one factor to consider. However, I do agree with you that Pipe should get more information before making a treatment decision, and should be open to alternatives other than surgery. Saying surgery is the only viable option -- as Pipe's initial urologist apparently did -- is nonsense.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 8/3/2010 8:01 PM (GMT -6)   
Medved,
I didn't know that Epstien didn't do ploidy. I know that Bostwick does. I'm of the opinion that the totality of information taken together will give you a pretty good idea of what you are dealing with and just one piece of info like ploidy may not be that useful. My Gleason 4+3 and psa of 40 would indicate agressive PC, but when taken with the scans, psa kenitics over time, PAP and PCA3 plus reaction to diet, the totality of information indicated a non agressive contained PC.
With nerve involvement you must take the nerve out with surgery leading to ED. A nerve can be radiatied without damage and maintain errection capability. I had nerve involvement and have no ED.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1406
   Posted 8/4/2010 2:38 AM (GMT -6)   
Hello Pipedream ~
 
Welcome to the forum!  You will find there are many gents and ladies here who are very helpful and caring.  I hope you will gain new knowledge to help your husband with the decisons he needs to make.  My husband is like yours in that he wanted me to do the research and pass along the information.  This has not been an easy journey, but we found out today that the DaVinci surgery will be performed on August 18 as scheduled.
 
I am so sorry you have been through the battle with cancer with both your husband and your son.   As you have stated,  we just want our husbands to survive, so we may have many more years with them! Wishing you the very best as you seek the right answers.
 
We are now reading a book,  Conquer Prostate Cancer: How Medicine, Faith, Love and Sex Can Renew Your Life, by Rabbi Ed Weinsberg and it is very helpful in answering some personal questions we've had.
 
 
Best wishes,
 
Aimzee
 
 
Husband Ron, age 63
Had Progesterone shots for 6 months.  January PSA was .05. 
4/1/10 PSA 5.5  Prostate size = 50 cc.
On Cipro (antibiotic) for 16 days
Bone Scan/CT Negative
Biopsy 4/20/10  12 samples... Adenocarcinoma:  3 positive on right side,
one core left base (5% ` 0.5 mm) -  two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
The surgery has been postponed twice.
August 18, 2010 - da Vinci Prostatectomy
 
(I do the posting for both of us.)

Post Edited (Aimzee) : 8/4/2010 1:43:00 AM (GMT-6)


pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 8/4/2010 1:55 PM (GMT -6)   
You have all given us much to think about....what seemed fairly straight forward when we left the urologist's office, now appears to be much more murky.

My husband is reading this thread but I don't think he will contribute - at least not right away. So I'm glad to hear from Aimzee that she is writing for both she and her husband because that is pretty much what I am doing.

Aimzee - You & your husband evidently have chosen to have the DiVinci procedure and the stats you list seem like his biopsy is a better one than my husbands. Are you willing to share what the main factors are that brought you to that decision? Or maybe you already have on this on the forum somewhere & you have a link to it?

I do realize we don't know enough yet to make a final decision. I called the urologist's office yesterday to ask if there was any additional information in the pathology report concerning the percentage of cancer in each sample. The doctor and his PA are on vacation. The receptionist said that we had been given the complete report and if it wasn't on that, there was nothing else available - that they had withheld nothing from us.

John T has introduced us to terms we've never heard before - MRIS with endorectal coil; ploidy analysis. goodlife mentions Brachytherapy and I'm not sure what that is either.

This morning I heard from the urology group that we are seeing next week for the second opinion. They needed insurance information in order to send my husband's slides to the hospital for analysis. There was mention here of having a pathologist who specialized in PCa provide an opinion. In this instance, I feel that we have no knowledge and thus no control over who does the second report. I didn't know it is possible to direct where and to whom the slides go. I also didn't know that pathologists specialize in any one form of cancer.

Medved - Johns Hopkins might be a possibility for us - the trip would be about 4 1/2 hours. Pittsburgh is nearly 3 hours. Depending on how next week goes and our level of confidence in what we are told, we might want to get a 3rd opinion.....if that is possible.

Sleepless09 - Your comments about the reason why the urologists were mocking HIFO had occurred to me though not exactly in the same way. I didn't buy the urologist's remarks completely. My question about the appropriateness for my husband was treated rather perfunctorily. I do wonder why the HIFO procedure isn't approved here. Could one possibility be that the long term effectiveness hasn't been determined yet because the procedure hasn't been around that long? If long term HIFO results turn out to meet or exceed radical prostatectomy, then I suspect this will change. But unfortunately not in time to be FDA approved for men currently needing treatment.

Purgatory - the recovery estimate was the same after chemo....they said 6 weeks to "normal" but my husband continued to feel better and better for more than two years after chemo ended.

142 - I like your turn of phrase "good forecasts that doctors push". Also, sitting in meetings worrying about incontinence issues and pain meds effects - there is more to going back than just being physically capable.

Tim has a bone scan and CT scan scheduled for Monday, the 9th. Right after those he meets with his colon cancer surgeon for a consultation that was scheduled before we knew about the PCa re: his next colonoscopy which is supposed to be done before the end of August. I assume it should be done before any prostrate surgery.

Historically we haven't always followed conventional medical wisdom - for instance, two of our three children were born at home with medical attendants. When Tim was on chemotherapy - our oncologist told us not to use any vitamins or nutritional supplements because it could weaken the effects of the chemo. But our PCP advised the opposite and gave us a whole list of supplements he advised taking to boost his immune system. We opted to follow his advice.

So our path is still uncharted and we are trying to process all the incoming data....as with our prior cancer experiences, treatment decisions for a particular cancer only seem simple from afar.

I really am grateful for the warm welcome and the information you so readily share. Thank you all so much.....I'm sure I'll be hanging around here for awhile!

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 8/4/2010 3:04 PM (GMT -6)   
Hi Pipe. Yes, there's a lot to learn and a fair amount of "foreign" terminology to master. Here's a plain language start, regarding some of the terms you mentioned: Brachytherapy is putting radioactive seeds in the prostate. It is a form of radiation. But instead of shooting radiation beams at the prostate, the seeds are implanted into the prostate and they provide the radiation. It is an outpatient procedure and many who have had it report that it was not a huge big deal. The other kind of radiation -- the radiation that gets "beamed" at the prostate is sometimes referred to as "external beam radiation" (or by its initials, EBRT), or sometimes also IMRT (Intensity-Modulated Radiation Therapy) or IGRT (Image Guided Radiation Therapy). If you use this external radiation, you typically go every weekday for 35 days (or something like that) and get the radiation beamed at you. It only takes 30 minutes a day, or thereabout. (But it is still more time that the seeds, which are a one time procedure). Some people use both the seeds and the external radiation (and among those, there is a debate about which to do first). You will also hear about proton beam radiation. That is another kind of external beam radiation, which is newer and less commonly available (though more and more places are offering it). Some doctors will give hormone treatments along with the radiation. Others do not do that, or do it only with somewhat higher risk cases. "MRIS with endorectal coil" is an imaging technique aimed at getting good pictures of the relevant area. You may have heard of magnetic resonance imaging (MRI) before. This is an MRI combined with a coil that is placed into the rectum in order to get better quality images. "Ploidy" analysis is an analysis of the DNA content of the tumor cells. If you have this done, the better result is "diploid" and the less good result is aneuploid (abnormal ploidy). Some say this is a useful predictor of how agressive the cancer is, in combination with other factors. I am pretty certain that most pathologists don't do this test -- at least unless you specifically ask for it. Yes, you absolutely can ask that your biopsy slides be sent to a pathologist with particular expertise in prostate cancer for a second opinion. You are right that most pathologists are generalists. But prostate cancer slides are notoriously difficult to read accurately, and as a result a little sub-speciality has developed of experts in pca pathology. If you want this (and I recommend it), you should ask your urologist to arrange it. But don't just say you want "an expert" -- tell him where to send it. I think there are some suggestions in this thread, and I would use one of them. Your treatment decisions will be influenced in large measure by your pathology report, so you want to get it right. And a second (or third) opinion from an expert increases the odds of getting it right. In terms of whether you can get a "third opinion" on treatment options (for example, by going to Hopkins, as i suggested), the answer is you absolutely can do that. Some people get ten opinions before they decide. I am not suggesting you do that, but three opinions is perfectly reasonable. And there is some value to getting at least one of those opinions from a leading academic medical center with substantial expertise in urology and oncology. It is also often recommended that a patient who is trying to decide among treatments talk with a radiation oncologist as well as a urologist. Urologists do surgery. Radiation oncologists do radiation. Mostly, everyone favors his/her own speciality. So it is good to talk with docs in different specialities, so you learn about the different options. I hope this is helpful to you. Best wishes.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

Post Edited (medved) : 8/4/2010 2:07:23 PM (GMT-6)


Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1406
   Posted 8/5/2010 4:28 AM (GMT -6)   
Aimzee - You & your husband evidently have chosen to have the DiVinci procedure and the stats you list seem like his biopsy is a better one than my husbands. Are you willing to share what the main factors are that brought you to that decision? Or maybe you already have on this on the forum somewhere & you have a link to it?
 
Pipedream, I have posted several things, mostly on the "Date with Robotics" thread.  Your situation is unique as is Ron's.  Tim has been down this road with battling cancer.  My husband is dealing with unexplainable pain BEFORE having his surgery.  I do know one thing, a colonoscopy should not be done until 6 months after surgery.  I am sure Tim's doctor will address this issue.
 
This all seems like a maze, and I am learning new things each day.  My husband went through a half-day conference with six doctors explaining the various procedures and treatments.  He found out that if radiation does not get rid of all the cancer, it is difficult to do surgery to remove the prostate, which is called salvage.   All factors must be investiagated.  The various doctors then confer, and surgery was recommended.  We then found out there are at least three types of surgeries.  First, he was told it would be perineal (from the bottom rather than the stomach).  Then the doctors changed their minds.  open Radical Prostatectomy was discussed, but after three more consultations, the decision was made to do the DaVinci Prostatectomy.  There is so much information out there about this method.  The gents here have also discussed it at length.
 
So, we have been through much in the past 4 months, but Ron is feeling more comfortable about his decision.  The doctors cannot guarantee the pain he now feels will be gone or if it will get worse.  He just wants to get rid of the cancer.  For you, getting another opinion is a good direction to take.  Perhaps Tim will also go through that conference whereby they introduce you to the various treatments?  As others have said, research will help in the decision making - as will the sessions with the various doctors.
 
As suggested here, write down all your questions, and don't leave the office until they have been answered.  Ron made his list, and I made another one.  After he was done, I still had 12 questions to ask the doctor!  You should have seen the look on his face.  LOL!  The one that surprised the surgeon was when I asked how many of the DaVinci surgeries he has performed.  He had to think for a few seconds, and then answered.
 
Once a decision has been made, there will be a sense of relief.  Do listen to what the colon cancer doctor has to say.  I think he will provide infromation you cannot find elsewhere.  Pipedream, there are several wives (and daughters) seeking information for their loved one.  May you find all the answers you and Tim need to find the right treatment!
 
Best wishes,
Aimzee

 




Husband Ron, age 63
Had Progesterone shots for 6 months.  January PSA was .05. 
4/1/10 PSA 5.5  Prostate size = 50 cc.
On Cipro (antibiotic) for 16 days
Bone Scan/CT Negative
Biopsy 4/20/10  12 samples... Adenocarcinoma:  3 positive on right side,
one core left base (5% ` 0.5 mm) -  two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
The surgery has been postponed twice.
August 18, 2010 - da Vinci Prostatectomy
 
(I do the posting for both of us.)
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