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Old 01-19-2009, 03:31 PM   #16
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Re: My Husband has Prostate Cancer - now what?

Hi again Wildewoman and steadman,

Here are some more thoughts and facts. It's great you are getting fine responses.


Quote:
Originally Posted by Wildewoman View Post
We plan on making this a fabulous vacation ~ as all our vacations have been.

I think personally, I would rather have my husband cancer free & healthy - having great sex is secondary at this point & doesn't even come up when we are discussing our options.

We have been through a lot in our relationship....
Our relationship is solid - for us, PC is just another journey in life. We will take that journey together.

You have the kind of relationship that is a great asset in this journey. It's the kind we should all have or strive for. I could recommend some relationship books, but you don't need them!

As of right now ~ he is leaning towards the surgery - done laproscopically, of course. If they can do it at Stanford, great! That is about 16 miles from our house!!

While I live in DC, I've been out to the Silicon Valley area frequently for business and am somewhat familiar with your geography. I know you are aware of the great value of having renowned educational institutions nearby. Stanford no doubt has some fine prostate cancer surgeons, but what I first think of is their outstanding reputation for radiation, including radiation research. In fact, they are at the front of the pack in pioneering Stereotactic Body Radiation Therapy (SBRT) for prostate cancer, especially using the CyberKnife (CK) delivery system. Since you are so close, you might want to at least touch base with the radiation folks at Stanford. Our board colleague viperfred was treated there with SBRT using CK and says he is doing very well. For my money (and life), that approach is still a little too experimental, though it looks highly promising, and we may know a lot more about results as early as next month thanks to an upcoming conference.

For surgery, UCSF is well known, with Dr. Peter Carrol in particular having an outstanding reputation. (And he coached the Trojans to an outstanding record in college football this year! Think of his commuting schedule! ) UCSF is also known for expertise in imaging for prostate cancer, especially with endorectal MRI with spectroscopy.


We will ask the team when we see them who will do the surgery & where it can be done!!

Thanks & keep the info. coming!!
You guys are gluttons for punishment! , and, we will! In fact, here are some comments catching up on your earlier posts over the weekend.

In #6, you wrote: "... As of this morning - I am leaning towards the surgery - that way the cancer is gone." Daff and precious 49 both addressed this, and I want to joint their chorus as it's a key point. While the cancer is definitely gone from the prostate, obviously, sometimes it is not gone from the surgical margins, and sometimes it survives in a viable, growable, still-dangerous form elsewhere in the body.

Actually, (brace yourself, then get ready for a twist in a much better direction), most low-risk PC patients awaiting surgery already have prostate cancer cells in their bones or blood! That's from research, and I can give you the citations if you wish. But the great news is that that cancer is most often not viable, at least it seems that way based on long-term results we have for such surgery and radiation patients.

So the question, still unanswered, arises: which of us drew the short straws? As of now, my layman's (but savvy) impression is that men with indicators of more aggressive cancer are more likely to have trouble with these fugitive prostate cancer cells. As far as you know at this point, the case statistics look pretty good, with one exception: the PSA increase from probably 7 to 11 in less than one year. Increases of more than 2.0 in the year prior to diagnosis have been recognized in just the past five years to suggest more risk than is apparent from the traditional indicators. It's really important for you both to tie this down further, confirming the earlier score, getting the dates, and perhaps getting a follow-up PSA once you are past the biopsy healing period. Also, if the recent PSA could have been influenced by infection or inflammation (or recent sex), that should be considered, as those things can increase the PSA, and thereby cloud the issue somewhat. If the increase is confirmed, then you might want to consider a one-two punch approach, as in surgery plus radiation, or radiation plus hormonal blockade for a while. The lead doctor for the "greater than 2.0" clue is Anthony D'Amico, and I started a thread about his team's research on 12/13/2007 entitled "PSA velocity > 2.0 and assessing seriousness of prostate cancer."

You also wrote: "... My neighbors priest had the "hormone therapy" and is not doing well at all. But her husband had the surgery about 10 years ago & is fine - no side effects...." It's really important to talk to some actual patients - helps give us a better grasp of the span of real outcomes and journeys. But it's also important to understand odds, and published research and doctor's records can help with that in many cases. As daff indicated, hormonal blockade therapy would be an unusual approach, but it is a potential option I could explain if you are interested. Many of us, including me, have done very well with that approach. Fortunately, many surgery veterans did as well as your neighbor's husband, as precious 49 indicated. However, I see many men in my support group who did not do so well, probably a distinct minority who feel the need for more support.

Take care, keep up you spirits, and keep learning,

Jim

 
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Old 01-19-2009, 07:21 PM   #17
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Re: My Husband has Prostate Cancer - now what?

Quote:
Originally Posted by sneadman View Post
Hi, it's me (Wildewoman's husband) that has the cancer. Some other info I got was there were 8 samples and one showed cancer. It was 2 centimeters of the sample which I was told was very minimal. ...
I'm thinking that 2 centimeters is long for an entire single core. In the Primer, a biopsy core is illustrated, and it's 12 mm long; the length probably varies somewhat. I'll bet the length of the cancer is actually 2 mm, which would match your description, instead of 2 cm. Is that right? That's not something you need to know now, but it would be good to get it right for your records and for communication with doctors.

Jim

 
Old 01-19-2009, 11:32 PM   #18
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Re: My Husband has Prostate Cancer - now what?

Quote:
Originally Posted by Wildewoman View Post
We plan on making this a fabulous vacation ~ as all our vacations have been.

I think personally, I would rather have my husband cancer free & healthy - having great sex is secondary at this point & doesn't even come up when we are discussing our options.

We have been through a lot in our relationship - I was hospitalized for a TAH (total abdominal hysterectomy) & he was there from start till today!! In fact, we laughed at the number of times he saw me in a surgcial cap & gown!!

Our relationship is solid - for us, PC is just another journey in life. We will take that journey together.

As of right now ~ he is leaning towards the surgery - done laproscopically, of course. If they can do it at Stanford, great! That is about 16 miles from our house!!

We will ask the team when we see them who will do the surgery & where it can be done!!

Thanks & keep the info. coming!!
Wildewoman,
Awesome response. I agree--that's why we chose the robotic surgery--I do have my husband and he is cancer free. And yes, Love Making is different but we are really having fun making it work I'm so glad that you have each other and life is a journey--and it sounds like the two of you will make it just fine with whatever procedure that you choose. precious49 God Bless You and Yours Today and EveryDay

 
Old 01-19-2009, 11:55 PM   #19
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Re: My Husband has Prostate Cancer - now what?

IADT3since2000,
I just think that you're the best. You always are very informative and I've learned alot from you. I just wanted to take the time to thank you and I'm very thankful that you're on this post.
Your opinion on this question? My husband has had 2 PSA's post surgery--both 0--are there any other tests that he should be having? I will check out your thread on PSA velocity. Again, a big thanks. precious49 God Bless You and Yours Today and EveryDay

 
Old 01-20-2009, 03:40 AM   #20
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Re: My Husband has Prostate Cancer - now what?

Quote:
Originally Posted by precious49 View Post
Wildewoman,
Awesome response. I agree--that's why we chose the robotic surgery--I do have my husband and he is cancer free...
While it's excellent that your husband and many others come through surgery cancer free, having surgery doesn't guarantee this. I think it's a misconception that surgery equals cure and radiation is a distant second in terms of cure. One of the benefits of advanced forms of external beam radiation is the ability to treat the margins that may have cancerous cells, as well as the prostate itself. Those that have surgery and find out that not all the cells have been removed may need to also get radiation to the prostate bed after they've recovered from the surgery, meaning they will have had to go through two courses of treatment.

Last edited by daff; 01-20-2009 at 05:13 AM. Reason: minor editing for clarity...

 
Old 01-20-2009, 08:24 AM   #21
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Re: My Husband has Prostate Cancer - now what?

Please correct me if I'm mistaken ~

I thought that with the surgery they remove the entire prostate & can then do a pathological examination on the entire organ - this will tell them if they got it all or not. ie) if the cancer was contained in the prostate of if it had spread. They would also be able to "see" inside of you to determine if there were tumors elsewhere.

I spoke to one of the pathologist where I work (I work at a large medical facility in the Health Information Department) and was told that if they have the entire organ - they can tell you exactly the level of the cancer, etc. and can in fact - tell you "We got it all!"

As opposed to hormone therapy or radiation - where you "hope" the cancer is gone - no sure thing.

I still have a lot to read before our meeting with the cancer team in 3 weeks.

Thanks!

 
Old 01-20-2009, 03:09 PM   #22
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Re: My Husband has Prostate Cancer - now what?

Based on all the research I've done and the information given me by the top Sloan-Kettering cancer surgeon and his associates who removed my prostate 8 years ago, your information is correct.
In spite of the endless debates over the merits of surgery vs. radiation in the treatment of prostate cancer, its true that only surgery offers the advantage of pathological studies of the prostate, seminal vesicles and regional lymph nodes to determine if all surgical margins and lymph nodes studied were clear and whether the cancer had penetrated the prostate capsule.
Although in science, absence of evidence cannot be deemed evidence of absence it certainly does provide more immediate and reliable evidence than all forms of radiation. Also, surgery allows for a fallback radiation option if it fails which is preferable for long term control than the salvage surgery option if radiation should fail.
Hope this helps clarify the issue somewhat.
Best of Luck, Bob

Last edited by shs50; 01-20-2009 at 03:11 PM.

 
Old 01-20-2009, 03:33 PM   #23
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Re: My Husband has Prostate Cancer - now what?

Quote:
Originally Posted by shs50 View Post
Based on all the research I've done and the information given me by the top Sloan-Kettering cancer surgeon and his associates who removed my prostate 8 years ago, your information is correct.
In spite of the endless debates over the merits of surgery vs. radiation in the treatment of prostate cancer, its true that only surgery offers the advantage of pathological studies of the prostate, seminal vesicles and regional lymph nodes to determine if all surgical margins and lymph nodes studied were clear and whether the cancer had penetrated the prostate capsule.
Although in science, absence of evidence cannot be deemed evidence of absence it certainly does provide more immediate and reliable evidence than all forms of radiation. Also, surgery allows for a fallback radiation option if it fails which is preferable for long term control than the salvage surgery option if radiation should fail.
Hope this helps clarify the issue somewhat.
Best of Luck, Bob

Thanks!! I appreciate your answer. We have been reading everything we can get our hands on, hubby has even found the complete procedure on a streaming on-line video program that I can't name here (ya gotta love technology) & I trust my pathologist/friend.

We still have a lot more information to gather - Gleason scores, PSA levels, etc. before we meet with the cancer team.

My girlfriend & I were talking about this & she nailed it right on the head - one day you're driving to work with a Peets coffee & the next your husband has cancer. Our whole world has changed - not necessarily for the worst - just taking us on a different path. One that we would rather have not taken - but we'll get through it.

Now our focus is to find out all we can, gather all of his records & be as knowledgeable as we can be about Prostate Cancer.

Thank you again!!

Last edited by Wildewoman; 01-20-2009 at 03:41 PM.

 
Old 01-21-2009, 04:50 AM   #24
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Re: My Husband has Prostate Cancer - now what?

Quote:
Originally Posted by Wildewoman View Post
Thanks!! I appreciate your answer. We have been reading everything we can get our hands on, hubby has even found the complete procedure on a streaming on-line video program that I can't name here (ya gotta love technology) & I trust my pathologist/friend.

We still have a lot more information to gather - Gleason scores, PSA levels, etc. before we meet with the cancer team.

My girlfriend & I were talking about this & she nailed it right on the head - one day you're driving to work with a Peets coffee & the next your husband has cancer. Our whole world has changed - not necessarily for the worst - just taking us on a different path. One that we would rather have not taken - but we'll get through it.

Now our focus is to find out all we can, gather all of his records & be as knowledgeable as we can be about Prostate Cancer.

Thank you again!!
Wildewoman,
Yes, your world has changed but you're right--it just a different path. And the 2 of you are getting so much info from these great people. I can tell that you'll both be fine and will deal with everything as One. Have a great day and enjoy that cruise!!! precious49 God Bless You and Yours Today and EveryDay
ps--after the surgery?--if you have any questions for me, feel free, as I have experienced taking care of my husband and I'm so thankful that I have him even without a prostate--I love him just as much and more without it

 
Old 01-21-2009, 06:22 AM   #25
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Re: My Husband has Prostate Cancer - now what?

Quote:
Originally Posted by shs50 View Post
....In spite of the endless debates over the merits of surgery vs. radiation in the treatment of prostate cancer, its true that only surgery offers the advantage of pathological studies of the prostate, seminal vesicles and regional lymph nodes to determine if all surgical margins and lymph nodes studied were clear and whether the cancer had penetrated the prostate capsule.
....
I would say that if there were no risks involved with major surgery and very little chance for serious incontinence and ED side effects, more would in fact choose this route. Clear margins are certainly great to achieve. Surgical patients still need to get follow-up PSAs as well as radiation patients, so neither group is fully out of the woods at the conclusion of treatment.

If cancerous cells have escaped beyond the margin of the area treated either by radiation or surgery, it's most likely going to be hormone treatment, if any is called for, to control the disease. I believe that the margin treated beyond the edge of the prostate goes further with external beam radiation (often about 1/2 inch) than is normally removed with surgery, and therefore microscopic cells may have a better chance of being eradicated with radiation.

I've never flat-out said radiation was better for all-- it's a personal decision.
Obviously it's not simple, and for various medical reasons one treatment might be definitely better than another. Sometimes tests, like the endorectal MRI with spectroscopy, can help determine if the cancer has penetrated the capsule. Knowing this might lead to a decision to use surgery, but not try nerve-sparing on one side, or to use radiation, with
wider margins being treated, for example.

For the several newly-diagnosed I've spoken with since my treatment, I primarily advise to read a lot, and speak with past patients of the various procedures--- and not
to blindly follow what the doctor recommends, whatever that may be. It comes down to a personal decision based on a lot of review and understanding of the range of potential side effects and their severity. If one chooses not to read about a particular alternative he's decided can't be good-- then he's made a decision with only partial info. Armed with more info can then make the next visit to the doctor more meaningful-- so I'm not saying one should disregard what the doctors say, just learn a lot so you're not choosing a treatment for his convenience and for which he gets paid.

If one starts with a bias towards having surgery (I did) but never looks further, then he'd never know if something else seemed as good or better
when comparisons are made. If you do look further and then ratify your initial belief then so much the better-- you'll know you did your personal due diligence.

When I recommend books, I mention Dr. Walsh's book, which leans strongly towards surgery, although it touches on many of the alternatives, and Robert Marckini's book, which makes a case for proton therapy. Jim, one of the most learned members of this board, has some other book suggestions which I'd take too. Again, there's no one answer for everyone but to fear reading about something different and is what I don't understand...

 
Old 01-21-2009, 09:38 AM   #26
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Re: My Husband has Prostate Cancer - now what?

Daff is of course correct ,as usual. Surgery certainly has its risks and the best one can do to minimize them is to select a top surgeon with the most experience and best reputation in a world class institution. Risk, however exists with any procedure chosen and can never be completely eliminated. The risks vary by the patients clinical condition and the treatment modality.
In the final analysis regardless of the amount of research one does, the decision as to treatment will still be subjective based on one's perspective, life experiences and risk perceptions. Each person facing these choices makes a conscious or unconscious risk/benefit determination weighing the pros and cons as best they understand them if they don't blindly follow a Dr's biased recommedations.
Daff made his choice and I made mine and I believe we're both satisfied with the course we've chosen and would make the same decisions if we had to make them again.
There is simply no one size fits all guide to treating this disease.

Last edited by shs50; 01-21-2009 at 09:40 AM.

 
Old 01-21-2009, 05:21 PM   #27
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Re: My Husband has Prostate Cancer - now what?

Quote:
Originally Posted by precious49 View Post
IADT3since2000,
... I just wanted to take the time to thank you and I'm very thankful that you're on this post.
Your opinion on this question? My husband has had 2 PSA's post surgery--both 0--are there any other tests that he should be having? I will check out your thread on PSA velocity....
Hi precious 49,

I'm just getting back to the board after focusing on the Inauguration yesterday, as well as a neighborhood tragedy that made it a day of great highs and a horrible low - a 24 year old neighbor was killed in a car crash as he was commuting to serve as a paramedic for the Inaugural crowds.

Thanks for your very kind words. I'm sure that all of us who respond regularly on this board are encouraged by feedback such as yours. It helps make it all worthwhile.

I also want to say that I hope you yourself will continue to post regularly. You are bringing a vital viewpoint and growing, fresh set of experiences to the board! It is very important for those seeking information to learn of good outcomes, which I hope you and your husband will continue to enjoy. (I particularly like that waving smiley face - may use that myself! )

There are a couple of testing bases your husband could be touching; he may be doing so already. One is still a bit controversial, though I'm a firm believer and a growing number of radical prostatectomy veterans are using it: one of the reliable ultrasensitive PSA tests. These tests can reliably assess PSA levels to as low as less than 0.01 (<0.01) in a practical clinical setting, and they give higher results to the hundredth place. The one I usually use for monitoring my intermittent hormonal blockade when I'm approaching the low point is the Immulite Third Generation ultrasensitive PSA test made by Diagnostics Products Corporation. It was the first approved by the FDA for ultrasensitive results, and it reliably gives results as described above. It is based on a normal vial of blood that is specially marked, packed and usually shipped out, for me from Virginia to a lab in North Carolina.

A more convenient Tosoh test can give results from the building next door to my doctor's building, but it "only" is accurate to <0.04. I believe there are other reliable versions that I have not committed to memory. It's useful to have a test with a lower limit of <0.01 because research has been done on the likelihood of a recurrence (meaning reaching 0.2) based on very early ultrasensitive results. I've posted about that before, and you could probably find it quickly with a search on this board, using, say "0.02" for the search. I would also be happy to answer questions about ultrasensitive testing.

Some doctors feel it doesn't help to have the year or more early warning that you don't get with a conventional PSA test with a lower limit of <0.1 or so. The doctors I follow and I are convinced that earlier followup treatment is probably more effective, and also that the early warning is highly motivating. Sometimes, switching diet, nutrition, supplement, exercise and stress reduction practices are all that are needed to stabilize or reverse a rising PSA. Often, we think, just one change - 8 ounces of quality pomegranate juice or an equivalent extract in a pill daily - will do this, but there are many other promising tactics. The mild drugs finasteride or Avodart may also be effective. But for many of us the motivation is critical, and an ultrasensitive test can give that. Of course, the best result is to get an ultrasensitive outcome of <0.01; in that case, the odds of a recurrence are extremely low. That means you get very early peace of mind!

Since many of us prostate cancer patients are more likely to have vitamin D deficiency and consequent decrease in bone density, testing for "25 hydroxy vitamin D" and getting a Bone Mineral Density scan are also tests that frequently show the need for action. It appears that a Quantitative CT scan is better for bone density determination for prostate cancer patients than a DEXA scan, but that is somewhat controversial. The Primer advocates the qCT scan as the superior choice. I have done well with just DEXA scans, but I have no evidence of arthritis.

Take care,

Jim

 
Old 01-22-2009, 12:20 AM   #28
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Re: My Husband has Prostate Cancer - now what?

Sorry your husband has PCa.
I Know the feeling. mine was detected at 63. There are many options. Know them all and select what makse you feel most secure.
I went the the CyberKnife a high tech external beam radiation treatment that last 4/5 days, high cure rate and low risk of side effects reported so far. It was first used fro brain tumors in 1992 and the clinical trail started for prostate cancer in 2003, Zero failures to date. I am now p months post CyberKnife and 100% all functions good and normal.

 
Old 01-22-2009, 09:43 AM   #29
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Re: My Husband has Prostate Cancer - now what?

wildewoman, I know what you and your husband are going through. I was diagnosed in Sept., age 62, traveling, etc.

You have received lots of good information from men who have been through this. I have just made my decision for treatment after 3 months of hard research. I had second opinions, third opinions, read numerous books, spent 1000's of hours on the internet researching literally everything I could. But I found the most helpful and honest information from men who have this disease and have been treated. I talked with dozens of men and they were very upfront, candid, and open.

I would urge you to have your husband talk with men, e mail them via lots of message boards out on the web, go to groups in your area and talk with them, read and research.
n my case, I ruled out surgery pretty soon after these discussions and reasearch. Finally, I chose Proton therapy and will hopefully start treatment in about 8 weeks.

Good luck on your choice. You have lots of choices and that is both good and bad because it is confusing.
I













Quote:
Originally Posted by Wildewoman View Post
My husband got the call on Thursday night from his urologist - following a biopsy the previous week - the biopsy was done because the urologist said his PSA was elevated.

The urologist told my husband that we need to meet with the Cancer Team - a urologist, a radiologist & some one else he can't recall in February & discuss my husbands options. He was told he has 3 options:

1. Surgery to remove the prostate
2. Radiation
3. Do nothing

My husband will be 62 in 2 weeks. We are both overwhelmed at this time.

We leave for an 8 day cruise in 5 days. When we got the high PSA test we decided - lets just do the biopsy before our vacation so it's done & we won't have to worry about it.

Now, I feel like I'm worried about everything.

I'm trying to find out as much as I can before the appointment ~ my husband said - "lets just do what they recommend." Heavy sigh . . . .

I'm not sure I like any of the 3 choices . . . .I wish there was a 4th option!!

Thanks!!

Last edited by panthersfan7; 01-22-2009 at 09:53 AM.

 
Old 01-23-2009, 02:52 AM   #30
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Re: My Husband has Prostate Cancer - now what?

Hi Wildewoman,

Very sorry for you and your husband, this involves both of you.

After my research I took my wife with me to discuss "our" choice CyberKnife with the radiation oncologist. We cleared up unanswered questions.

It is now 9 months post CyberKnife and I am very happy with the choice. ZERO side effects and improve urniation. And "our" Doctors clinical trail started in Dec 2003 has Zero Failures.

It is very important to understand each option, risk do vary with each treatment type and by doctor. What was important to me to know was the cure rate, ED risk and adult diaper risk. The fact that treatment was easy, five sessions, was a bonus.

The very best of luck to you.

 
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