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Old 02-27-2009, 06:28 PM   #1
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Husband 53, just diagnosed, T2b?

We just received the pathology report, and went over it with urologist last night. Gleason score 7 (3+4), 5 of 12 positive biopsy samples, significant volume (70%, 75%, 95%), perineural involvement. All on right side though. I personally have done lots of research, and am scared to death. Our youngest son is only 12 years old.
Urologist is convinced surgery is our best option. Husband agrees. He "wants it out." He luckily is a more optimistic person than I am, and I am trying to keep my fears to myself.
Comments? Encouragement?
P.s. his father had PC when in his late 70s, had seeds implanted, is 84 now and "cancer free."

 
Old 02-27-2009, 07:06 PM   #2
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Re: Husband 53, just diagnosed, T2b?

Certainly more challenging than many of us, in dealing with what to do, but still good reason to be hopeful that this can be dealt with successfully. It may be that surgery is the best option, but that may require follow-up radiation too. You didn't mention your husband's PSA, but that has a bearing on all this too.

You should be able to get a lot of information from this board. One common theme is that the urologists almost always say that surgery is best, but many of us do a lot of research and come up with an alternative we feel is at least as good. I'm not saying that this may be the case at all here-- just that it's good to investigate further. In my case, I was 64, with a Gleason 7, PSA 4, and immediately scheduled robotic surgery. But upon lots of reading and talking with others, I later opted for proton beam radiation. Again, I'm not suggesting that for your husband, just saying it might be worth looking into.
It's a highly targeted beam and it leaves the body without an exit dose of radiation, so that there is lower likelihood for damage near the prostate and thus fewer side effects. The treatment area can be adjusted so that one side can receive radiation over a greater margin just beyond the prostate.

It's interesting that someone I met recently, 50 yrs old, Gleason 6, and also a T2b was told he should have surgery. It was scheduled but then he was able to get a consultation at Univ of Florida Proton Therapy Institute in Jacksonville- and based on that consultation and exam, along with information from me and what he read in Robert Marckini's book, You Can Beat Prostate Cancer, decided on that form of treatment- and will begin very shortly. (One of the five proton centers in the U.S. is in Houston at M.D. Anderson, although the two places that seem to devote much more of their time to dealing with prostate cancer are at Loma Linda, Calif, and Jacksonville, Florida.)

Again, I didn't say that was my recommendation-- I just thought it is well worth considering- and additional medical opinions are important. If there's a chance that the cancer has penetrated beyond the prostate and the surgery doesn't get all of the tumor, then it's possible that the doctors would want him to have radiation at that point, and/or go on hormone therapy. Guess I'd want to check out the alternatives and speak with
one or two more doctors, including a radiation oncologist. Part of the problem comes in where the doctor(s) one speaks with have a vested interest in doing what they do, making the whole process more confusing for patients that do not do extensive due diligence on their own.

Also, there are MRI tests done endorectally with spectroscopy- while not 100 accurate, they are much more accurate than the standard MRI. Did your doctor schedule that (not done everywhere- one of the difficulties, but there's probably a location near you-- mine was done at the Mayo Clinic in Jacksonville).

I'm sure you'll get other viewpoints as well on this board. If you have the time to sort through other postings made in the recent past, you'll pick up some additional info too.

 
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Old 02-27-2009, 07:38 PM   #3
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Re: Husband 53, just diagnosed, T2b?

Thanks for the reply. Yes, we are scheduling appts. with other urologists.
His PSA was 4.2. So I think that is good; hopeful for no metastases. No MRI or bone scan is needed, according to current urologist.

We have several M.D.s as neighbors/friends, who have mentioned the Proton therapy. How do people do that extended treatment and still work??

Another issue we have is my husband commutes weekly from Dallas to Birmingham to work. I want him to have treatment here, so he can recover in his own home. And taking care of our boys is an issue with going out of town.

I have been reading the board posts. All are very helpful, but confusing at the same time!

 
Old 02-27-2009, 08:09 PM   #4
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Re: Husband 53, just diagnosed, T2b?

Quote:
Originally Posted by jhb123 View Post
.. Yes, we are scheduling appts. with other urologists.

... No MRI or bone scan is needed, according to current urologist.

We have several M.D.s as neighbors/friends, who have mentioned the Proton therapy. How do people do that extended treatment and still work??
...
I'd say you need to expand beyond urologists unless you find a truly impartial team, well-schooled in the various treatments and not biased to recommend their own (tough job I'd say).

"No MRI needed" seems like the wrong answer for me and difficult to understand, especially when the cancer is at the edge of the prostate. Wouldn't it be useful in examining the various treatment alternatives to have a reasonably high likelihood of knowing if there is or is not extracapsular extension? Again, it should be the spectroscopic endorectal MRI. My urologist said that they only use the MRI for high risk cases-- my comeback to that is how do you know if it is or is not high risk without using the tools available to find out? It was actually comforting for me to know that Florida Proton did require several tests- and wanted to review the biopsy slides as well- so I liked knowing that they didn't take anything for granted.

Last point was how one works if you're away for two months of treatment.
If one needs to be physically in an office or elsewhere, there's probably no good answer. When I was in Jacksonville, there were those who were able to continue their work via phone and computer. The time used for the actual treatments is short- can be less than a half hour at the center, allowing some time for waiting and prep. The beam is "on" for only a minute or two each day for the treatment. The good news is that one doesn't get tired from this, and can pretty much carry on with other activities. Depending on how difficult it was to get home, some were gone each weekend (scheduling the Friday treatment early in the morning and the Monday treatment in the afternoon to allow as full a time as possible away). Others found it easier to stay in their sublet space in Jacksonville (lots of places to choose from now) and had periodic visits from friends and family.

Last edited by daff; 02-27-2009 at 08:12 PM. Reason: Added one final sentence.

 
Old 02-28-2009, 12:13 PM   #5
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Re: Husband 53, just diagnosed, T2b?

Quote:
Originally Posted by jhb123 View Post
We just received the pathology report, and went over it with urologist last night. Gleason score 7 (3+4), 5 of 12 positive biopsy samples, significant volume (70%, 75%, 95%), perineural involvement. All on right side though. I personally have done lots of research, and am scared to death. Our youngest son is only 12 years old.
Urologist is convinced surgery is our best option. Husband agrees. He "wants it out." He luckily is a more optimistic person than I am, and I am trying to keep my fears to myself.
Comments? Encouragement?
P.s. his father had PC when in his late 70s, had seeds implanted, is 84 now and "cancer free."

Hi,jhb123,
Daff covered many of the thoughts that comes to mind. I had proton therapy and have a prejudice for that procedure, but realize even if it was the best procedure for me (I think it was) does not mean anything for anybody else.
I wonder if the Gleason scores are as precise as the credit that seems to be given to them. However, even if they are estimates, your estimate is slightly better than mine (I had a 7, but a less favorable 3+4). I was told biopsies done on prostates after surgery tend to be higher than the guess from the tests of core samples. From what I read having a "3" or less with the primary pattern is encouraging.
Reading your postings reminded me of one of my favorite wives of presidential candidates: Teresa Heinz Kerry. She was the one who was bothered by the rise in his PSA. Senator Kerry says she is a "hawk" on health issues. I bet she concurred with his decision to go with surgery. I wouldn't be surprised if she had something to do with his getting help from one of the top surgeons (who pioneered the nerve-sparing surgery), Dr. Patrick Walsh. Senator Kerry was in the midst of his campaign and did not want to lose my time on the job in the Senate and on the campaign trail. So some high profile men,like Senator Kerry (also, Bob Dole, Norman Schwarzkopf, Colin Powell, Joe Torre, Roger Moore and the emperor of Japan), selects surgery and some of them must have time to do several weeks of radiation. Kerry's father had died of prostate cancer and he was wanting, like your husband, to be rid of it.
General Schwarzkopf expressed relief a month after his surgery to have the surgeon report that the General's prostate was still in a jar on the doctor's desk. I decided this sense of security was not as solid as I wanted. It was tough to get much certainty about whether the cancer was outside the prostate or much precision about where it was if it had spread. Is the surgeon going to find and remove any and all nearby cancer cells? I decided I would go with uncertainty of the proton therapy which zaps 12 mm outside the prostate hoping any cancer outside was within what I understood to be the median of 3 mm. If the experts can't give the patient 100% assurance, I guess one has to research and use his informed intuition...or maybe get advice from someone like you or Teresa Kerry.
The Japanese emperor had a team of the top seven surgeons. If I had gone with the urologist who kindly gave me the diagnosis, I probably would have been okay (he uses the DaVinci; that would have made for more interesting conversations with people willing to hear my stories, but I see some advantages to open surgery). If I had postponed the decision until I had a second opinion and had done research and had still gone with surgery, I think I would have checked out the feasibility of getting a top surgeon (such as Dr. Patrick Walsh or Dr. William Catalona, experts in nerve-sparing surgery [less chance of impotence and incontinence]).
Daff's ideas regarding proton therapy might make that a good place for a second opinion. Dallas and Houston probably have surgeons in which your husband would have confidence. M D Anderson has an outstanding reputation. It has a proton therapy center. Reactions of some people who applied there, give me a bias (based on limited data) to prefer Jacksonville, Bloomington (IN) and Loma Linda for my friends with a prostate cancer diagnosis.
Sorry for the long posting. I had planned to post a brief paragraph. Good luck.
Dale

 
Old 03-01-2009, 08:10 PM   #6
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Re: Husband 53, just diagnosed, T2b?

Hi jhb123,

You've already had some excellent comments from daff and dale, so I'll join their chorus and add a few points in green.

I especially endorse the idea of getting second (and third, etc.) opinions beyond just urologists, though touching base with more than one urologist is not a bad idea either, just so long as you also hear at least from at least a radiation specialist. Some urologists also do seeds, but there's a fairly good chance that external beam radiation should be in the picture to get wayward cancer cells that are beyond the prostate, and urologists don't do external beam.

I too, like the urologist, doubt that the bone scan would do much good, but I'm sure with daff on thinking an endo rectal MRI with spectroscopy would be wise. I'm also thinking a Bone Mineral Density scan and a 25-hydroxy vitamin D test would be wise because decreased bone density is epidemic among prostate cancer patients, and your husband has some of the higher risk characteristics that make me think bone density might need addressing. (That's typically done with bisphosphonate drugs, often those like Fosamax or Boniva, plus calcium and vitamin D3 supplements.)


Quote:
Originally Posted by jhb123 View Post
We just received the pathology report, and went over it with urologist last night. Gleason score 7 (3+4), 5 of 12 positive biopsy samples, significant volume (70%, 75%, 95%), perineural involvement. All on right side though.

That moderately high percentage of cores that are positive, combined with the high percentage of cancer in each core, the perineural invasion (indicating the cancer is in one of the highways out of the prostate) and the GS 7 suggest it would not be surprising if cancer is already trying to establish itself beyond the prostate on the bad side. I know that because those characteristics sound much like mine, though significantly better in the % of cores involved and certainly in the PSA (mine was 113.6), and I've paid attention to what that combination of indicators means.

I took a look at how enhanced formulas used by Memorial Sloan Kettering (MSK) in New York City would predict using the information you have provided in your posts on this thread, plus a few reasonable assumptions regarding lenth of cancerous versus non-cancerous tissue based on the percents per core. MSK is one of the leading institutions in the world in researching and treating prostate cancer.

Basically, their formulas indicate the odds are strong for success (meaning no recurrence at the five year point with either surgery or radiation, but with surgery getting the nod, with 91% success versus 86% (seeds or 81 Gray external beam, boosted to 88% if also a course of hormonal blockade. That's just about even. Estimates of success at 10 years are a few percentage points lower - still quite good.

But the formulas don't allow you to say there is perineural invasion, which would probably be a factor somewhat favoring radiation. Their formulas suggest the chance the cancer would be confined within the capsule would be about 59% versus 38% spread beyond the capsule (yeah, I know they don't quite total 100%, but it's close). Their formulas have not yet been extended to patients who have surgery plus radiation. These are my layman's calculations, but I think the results are close to what a doctor would get.

There are some additional tests that could be helpful, and with your husband's higher than average risk, at least a PAP test (prostatic acid phosphatase, a simple blood test that uses blood collected as for a PSA test) could be useful. Several researchers have demonstrated that the PAP helps root out otherwise unseen bumps in the road for surgery or radiation.



I personally have done lots of research, and am scared to death.

I think all of us can identify with that! It's hard not to feel that way near the beginning, but as time goes on, with the learning you are doing, you and your husband should gain a lot of confidence.

Our youngest son is only 12 years old.

The odds are very strong that your husband will survive prostate cancer and be there for your youngest son for many, many years.


Urologist is convinced surgery is our best option. Husband agrees. He "wants it out." He luckily is a more optimistic person than I am, and I am trying to keep my fears to myself.
Comments? Encouragement?
P.s. his father had PC when in his late 70s, had seeds implanted, is 84 now and "cancer free."
Good for him, and it's great to hear another success story!

Take care, keep your spirits up, and good luck to you both in sorting all this out. Please keep asking to answer any confusing questions.

Jim

 
Old 03-01-2009, 11:21 PM   #7
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Re: Husband 53, just diagnosed, T2b?

Hi, jhb,
I am happy to see you got a posting from Jim His information will help your husband prepare questions when you get follow up with your doctor and if you get the recommended second (or third) opinion. I bet you guys get some answers that you may want post here and get some feedback of men who have had comparable answers given. I think Jim has read every book/article written regarding what questions arise from your next doctor consultation.
I had a typo in my posting. Our Gleason scores were almost the same, but not quite. I incorrectly used your numbers for my score. My total score is the same as yours: 7. However, if the pathologists got it right, your subscores are better: yours is 3+4, but mine is 4+3. Maybe I was hoping I had yours because that is what I typed. That difference on the primary pattern is significantly better for you. A "3" enjoys a nice gap, I am told, below a "4." Having five positive samples with more than 50% in three of them is a good occasion to ask regarding the chances of cancer being organ-contained. Is it feasible to get test(s) mentioned by Jim and Daff to know the answer to that important question (has cancer spread outside the prostate?)? Does any probability of penetration have implications regarding treatment choice? If surgery is being recommended, which procedure is best for treatment of the prostate cancer and determining/treating any spread?
I would print out those ideas from Jim and Daff and have some portions underlined when I chatted with the doctor giving me a second opinion. With having PCa in the family history, you will have background information that will make more sense to you than those fortunate enough to not have that history.
Good luck. I just wanted to correct those numbers: I have 4+3 and YOU have 3 + 4. Got it right this time.
Dale

 
Old 03-02-2009, 11:17 PM   #8
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Re: Husband 53, just diagnosed, T2b?

Thanks to all (Dale and Jim?) for the replies. My husband and I talked at length (well for him at least). I am getting frustrated too quickly and easily I think. I am such a research freak; husband is NOT. I have been trying my darndest to get info on other local doctors, appts. etc. He just seems to be content to go with the one in Alabama. He doesn't even want to tell our boys yet! They are 12 and 17. The 12 yo has already heard me talk to my mother about this on the phone. I told him a little; didn't use the word cancer. Husband wants to wait til this weekend. I am going to insist at that point.

He does not want to even think about it spreading. I want to insist on further tests; he's not inclined to do this. SO frustrating. I hate to "argue" with him on any of this. Ultimately it's his decision. I don't want to seem selfish about having treatment done here in Dallas. But there will be so much more stress for me and our boys I have to go back to AL with him for indef. amt. of time.

Sorry so negative tonight but thanks for letting me vent. How did YOUR wives handle this?!?! I am "only" 46 so I want him around for much much longer!
Susan

 
Old 03-03-2009, 11:03 AM   #9
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Re: Husband 53, just diagnosed, T2b?

Quote:
Originally Posted by jhb123 View Post
Thanks to all (Dale and Jim?) for the replies. My husband and I talked at length (well for him at least). I am getting frustrated too quickly and easily I think. I am such a research freak; husband is NOT. I have been trying my darndest to get info on other local doctors, appts. etc. He just seems to be content to go with the one in Alabama. He doesn't even want to tell our boys yet! They are 12 and 17. The 12 yo has already heard me talk to my mother about this on the phone. I told him a little; didn't use the word cancer. Husband wants to wait til this weekend. I am going to insist at that point.

He does not want to even think about it spreading. I want to insist on further tests; he's not inclined to do this. SO frustrating. I hate to "argue" with him on any of this. Ultimately it's his decision. I don't want to seem selfish about having treatment done here in Dallas. But there will be so much more stress for me and our boys I have to go back to AL with him for indef. amt. of time.

Sorry so negative tonight but thanks for letting me vent. How did YOUR wives handle this?!?! I am "only" 46 so I want him around for much much longer!
Susan

 
Old 03-03-2009, 12:13 PM   #10
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Re: Husband 53, just diagnosed, T2b?

Quote:
Originally Posted by jhb123 View Post
Thanks to all (Dale and Jim?) for the replies. My husband and I talked at length (well for him at least). I am getting frustrated too quickly and easily I think. I am such a research freak; husband is NOT. I have been trying my darndest to get info on other local doctors, appts. etc. He just seems to be content to go with the one in Alabama. He doesn't even want to tell our boys yet! They are 12 and 17. The 12 yo has already heard me talk to my mother about this on the phone. I told him a little; didn't use the word cancer. Husband wants to wait til this weekend. I am going to insist at that point.

He does not want to even think about it spreading. I want to insist on further tests; he's not inclined to do this. SO frustrating. I hate to "argue" with him on any of this. Ultimately it's his decision. I don't want to seem selfish about having treatment done here in Dallas. But there will be so much more stress for me and our boys I have to go back to AL with him for indef. amt. of time.

Sorry so negative tonight but thanks for letting me vent. How did YOUR wives handle this?!?! I am "only" 46 so I want him around for much much longer!
Susan
Hi, Susan,
Good for him!!! His talking at length may not have been an easy thing. Some men deal with pressure that way. I recall the frustration I had in wanting to get some information about the prostate cancer of the father of my son-in-law. He was diagnosed about the same time I was. I did not learn about that fact until I was underway with the treatment I had selected. If he had not decided on a course of action, I was wanting to share anything from my research that seemed relevant. I was also interested in the information he was gaining. I was especially interested if he had contact with highly regarded M D Anderson and his impression. He lives in Texas. I never learned where he went. He gave me a couple sentences of information and a large attachment of Bushisms (which he thought I would enjoy and would distract me from the unpleasant topic of prostate cancer). I have followed his polite preference to avoid the subject. So your husband is not alone.
However, it is good that he resisted any tendency to battle this problem without the help of family. He seems highly motivated to spare you and your sons from the pain of the problem. However, because of this desire and his young age, it is probably important to select a course of action that will have the best outcome. Getting that good outcome would seem to trump other considerations, such as Dallas vs Alabama vs other treatment location. If Alabama is going to give him the best outcome that would justify any inconvenience with that.
With his not wanting to wade through extensive research probably limits the chance that he will want to follow up on many suggestions made by you or anyone other than the doctor(s) in whom he has trust. That is true when the research does not lead to certainty even though it enables one to be confused at a more informed level. Jim has done so much research on testing that address the important questions about the possibility of spreading that his laymen's opinions have great value. However, getting some of those done might take the patient being more informed and determined to get them done than the doctor is in recommending them (I found I was put off when making such requests. I got a bone scan, which I have decided has no value for someone with my diagnosis...and a CT scan which was of very little value. Maybe it relates to what a doctor habitually does...or what gets covered with little resistance from health insurance companies. I think having a couple tests with little or no value covers the doctor on what he is guessing about any spreading.). I have a thought about how to deal with the reluctance of the system (and your husband?) to follow the ideas provided by Jim. Maybe your long chats with your husband will enable him to come up with flexibility to find a way to pursue more understanding of the size and nature of his problem.
Excuse me for belaboring this with more words than you should have to read on a single posting. However, I think some of the things in your husband's diagnosis reminds me of my situation. His position (young family) makes him rightfully feel it is even more important that he get it right (I am old and my son/daughter are grown). He apparently feels that is to move in the plan that he has without being distracted. I think we both had at least a 50/50 chance of capsule penetration. Both of us probably would have been well served if we had 20 or 24 samples rather 10 (mine) or 12 (his). He had five with, you said, substantial percentages. I had only two, but with even higher percentage. I did not get any tests that gave me precision on this topic. Is the cancer OUT...and, if so, HOW FAR?? I got one estimate based on the prostates of other guys. Information (gleaned from surgery, I guess) suggests that the cancer usually grows slowly after leaving. That fact, though general and not necessarily related to me, was reassuring. The average of cancer cells was only 3 mm. If that is all the spreading my cancer has experienced and it is not in some remote spot, I probably would have had success with surgery (open might have better than the recommended robotic surgery) or the combination of hormone/seed therapy/external radiation (second opinion from a wonderful cancer center). I finished my proton therapy in January and am very very optimistic.
Here is what I would do if I lived in Texas with connections in Alabama with the prostate cancer I had...knowing what I know now: I would not go for more testing if my GP or urologists had not suggested them. However, I would seek a treatment course where the treatment center would give them as part of its decision to accept me. Open surgery, proton therapy and brachytherapy seem to be more effective when cancer is contained in one spot. Those centers would want to have some level of certainty they could help or they would not treat. So I would contact a highly regarded surgeon like the two I mentioned in my earlier posting...regardless of how far I would have to travel or how many times I would go for consultation. My second treatment choice opinion would be to check out a proton therapy centers. I would skip M D Anderson in Houston and Boston Mass. I would choose Jacksonville or Bloomington, IN (I don't think I.U. sees many patients so I suspect Jacksonville would start treatment sooner.). If the wait was going to be long at Jacksonville or Bloomington, I would consult with Loma Linda (where I went and was very satisfied). If one of these sites was willing to treat your husband, his apparent desire to tell his boys he has fixed the problem and he has no ongoing problem, proton therapy would answer this better than surgery (even though he is probably able to hide the side effects from the boys). Except for needing to take 8-9 weeks vacation (he come come home on the weekend), proton therapy is conducive to DENIAL. Right now I am thinking...why am I taking my time and yours...going on with this long story. He will be able to do whatever he does now with your boys. I did a favor for the man from North Carolina whose treatment followed mine. I gave him my turn so he could take his son to the airport. He had been playing 9 or 18 holes of golf each day his son visited him during his proton treatment. I bet he didn't use the proton treatment as an excuse for any low scores. So I hope that your husband can see the benefit of getting another opinion to give him the best chance of limiting the impact of this problem. He would not have to stick with the second opinion (from Dr.Walsh/Catalona or Jacksonville proton therapy, for example), but if it helps him make the best decision, what are the negatives for that action?
Sorry I could not be concise. I see it is even too long to be proof read or read.
Dale

 
Old 03-03-2009, 01:38 PM   #11
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Re: Husband 53, just diagnosed, T2b?

jhb123 I am so glad I decided to read your post because you and I have a lot in common. I sent you a PM. Not sure if you know of that feature yet I would love to chat with you and support you in anyway I can. I found this board to be very helpful to me. Especially, in the beginning of the process. The men here are very knowledgeable and supportive. I ,like you, did a lot of research on PC. My husband just met with one urologist and was willing to have this urologist perform the surgery. I encouraged my husband to see another urologist for a second opinion. We ended up going with the second guy. He had more experience, was more concerned about my husband's concerns and spent about an hour explaining everything to us. Luckily we made the right choice. At least so far.

 
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