New here....

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.

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

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).

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)

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)

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.

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

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

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.

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

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

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!

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