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surgery or radiation?

Mounty
Posts: 36
Joined: May 2013

I'm a new member of the PC club and I'm  finding this forum very helpful and interesting. I'm hoping to obtain some feedback on treatment options relevant to my specific circumstances, which are as follows:

I'm 61 (I almost wrote "I'm a 61-year old male", then came to my senses) and otherwise healthy. There's a family history of PC (two first-degree relatives). A weak urine stream led to bloodwork in early March and a PSA reading of 34, which was confirmed by another blood draw and reading two days later; a digital rectal exam by a urologist the next day was positive. All fourteen cores of an April 8 biopsy were positive (!), most cores were   60 - 90% malignant; three cores were Gleason grade 3 + 3, five cores were 4 + 5 and the rest were 4 + 4 for an overall Gleason score of 4 + 5.  Two CT scans in March were negative, as was a post-biopsy bone scan (surprisingly, according to a surgeon consulted a few days ago), although a  full bladder from which I could  void just a few cc's at a time partially obscured the pelvic region from the view of the gamma camera.  After learning the diagnosis a week ago I received two injections of digarelix for rapid relief of the urine retention problem, which had rapidly progressed from mild to severe during the past two months.

So I'm in the research and discovery phase before I settle on a therapeutic course of action.  My burning question is, should I go with surgery or radiation therapy + androgen deprivation therapy? My urologist and the radiation oncologist he immediately hooked me up with  - both are non-academic physicians - are recommending radiation and two years of anti-hormone therapy (digarelix). I've reviewed the findings of a Phase III study of digarelix efficacy - it seems like a good approach for knocking down testosterone, and it sure seems to be working for me with regard to urine retention ( I'm no longer considering moving my office desk into the men's room at work).  An academic urology surgeon has indicated that the radiation and hormone regimen  laid out by my current docs is a good one; his argument is: 1. although it may not have mestastisized, given its aggressive nature the tumor likely  extends beyond the prostate (actually, he put the odds at 100%) and it would be difficult to eliminate completely with surgery, and 2. because of the large size of the tumor, surgery would likely leave me incontinent. These seem like convincing arguments, and I'm  impressed by the fact that as a surgeon this doc is turning away business with this recommendation. A second academic surgeon, however, recommends a radical prostatectomy based  on the argument that it would be more effective at eliminating tumor cells and would also eliminate nearby lymph nodes. However, the first surgeon thinks the lymph nodes can be adequately dealt with using radiation. All of these guys are extremely bright and competent with stellar records of success - hence my dilemma. I'm also getting mixed signals from these docs about how urgently (timewise) I should pursue my options and decide how to proceed.

My wife and I are reading up on the subject voraciously and I've scheduled consults with two more surgeons and a radiation oncologist during the next few weeks.  I'll certainly ask them lots of questions. The radiation oncologist (who is at a major cancer center) has also arranged for a second look at the biopsy slides, although I'm reasonably confident  the cores were called correctly the first time. I think it's possible however, that none of these  docs can provide the unique perspective of a well-informed patient (or patient's significant other) who has made their way through the process of being treated. This clearly describes many of you posting to this forum on a regular basis. I realize my dilemma is one that most of us have faced and I'm aware of previous posts that addressed similar questions - but it appears the tumor I've been diagnosed with is especially large and aggressive.  Any thoughts on the best route to take - as well as references to hard data - would be greatly appreciated.

Thanks, and best wishes to you all . . .

 

BLUEpac6
Posts: 31
Joined: Jun 2012

I was prety well in your same predicament but my psa was 110.I had bone scann which were negative and mri and cat scan that showed a hump protruding from prostrate.to make a long story short the local surgeon here said he would not operate as it would be to dangerousand local oncologist said he woud put seeds in and do radiaton also.Iwent to cancer center of america in oklahoma for a second opinion and they said the same thing I would have to have radiation.I took a hormone shot and was going to have to wait 90 days before radiation wouid begin.In the mean time a friend of mine was talking to his urologist about me and the doctor called me and said if you have radiatoin and cancer returns there is not no cure left as you cannot have surgery after radiation. He put me in touch Dr.Seth Lerner at baylor clinic in houstn. He said he would operate but if he operated and found cancer in my lymph nodes he would have to colse me back but they were fine and he removed prostrate with no side effects and reall no pain.everything was fine for about one and half years and my psa rose to .06 and doctor said I would need salvage radition which I did in june 2011.As of feb.2013 my psa was .0003.Thats what I went throug trying to figure out what course to take Ithink Imade the right decision.Hormone therapy is not a cure it just keeps the cancer at bay till at some point the cancer gets imune to the hormone therapy.Thets my story.I know the decision is a hard one to make.I pray you will do fine.

Mounty
Posts: 36
Joined: May 2013

Thanks Bluepac6 - this is a big help.  I'm encouraged by your success story.  I'm still exploring the different options and I've learned  this is all pretty complicated, but knowing that this plan worked for you will help me to decide.

Best wishes . . .

 

tp23
Posts: 11
Joined: Apr 2013

Mounty -

     I was recently diagnosed with prostate cancer.  11 of 12 positive cores with Gleason 8's and 9.  CT scan negative but seminal vesicles most likely invaded.  My urologist immediately placed me on bicalutamide and a few days later I received my first injection of Lupron.  The short term goal as he described it is to shrink the tumor to make it more resectable.  His theory, and mine as well, is remove what you can, and mop up with radiation.  He's stated that the ADT will be long term.  I should add that I just turned 50.  My PSA is only at 4.2 so there are concerns that it isn't a good indicator in my case.  I was suffering from frequent urination, couldn't fully void (Flomax didn't help), at times it was almost painful, like the hold your legs together to hold it in, weak stream, double digit starts/stops, total loss of sexual function (even with Viagra), and pain when sitting.  My urologist told me to expect an imprvement in my symptoms within 2 weeks and that would be a good sign indicating that the tumor is most likely hormone dependent (a good thing).  Well, it's been about 2 weeks now, and I've got to say, my symptoms are all improving.  Stream is full and no pain when sitting.  I've been doing my research too and most everyone I've spoken with and consulted with agree that if you can get it out, do so.  The target will be smaller for raditation and the radical prstatectomy will allow for lymph node investigation and biopsy of the tumor, as well as sampling of the margins.  From what I've read, surgey after radiation is not impossible, but not likely, and some doctors apparently won't perform it.  My urologist also stated that the lymph nodes would be removed and tested first, and if found positive, he would not continue.  He told me that podst op radiation would be like an insurance policy, and given the aggressiveness of the 8-9, should be part of my treatment.  No negative effects from any of the medications thus far.  One very informative source for me was NCCN.org.  You may want to give it a once over.

Good Luck - My best wishes for you & your family

Mounty
Posts: 36
Joined: May 2013

Thanks TP,

Your post is also really helpful, especially because you're in about the same boat I am with regard to high Gleason score and a large number of positive cores.

The radiation oncologist I met with yesterday (after my first post the day before) made a similar recommendation for surgery. So now I have a recommendation for radiation from a surgeon and for surgery from a radiologist! At least I know their advice is not tainted by financial considerations. Once again, both these guys are really smart - I think their different suggestions highlight the complexity of the problem.

In fact the radiation oncologist's recommendation yesterday was very similar to the recommendation you received - androgen deprivation therapy followed by surgery followed by radiation and more ADT. I'm beginning to think - and your post  reinforces this notion - that this might be the best approach for those of us with high grade localized disease, although I also realize that everybody's case is different and nobody has the same disease.

Unlike the community practice radiation oncologist I consulted with earlier, this one works at a large academic cancer center (actually, one of the members of the NCCN) and in the past he's participated in the development each year of the annual guidelines for prostate cancer treatment by the National Cancer Institute. You might be interested to hear that he told me the next set of guidelines will be published soon and he thinks it may recommend intermittent hormone therapy (or perhaps shorter term ADT) as a way to reduce the potential for the development of ADT-refractory disease in the longer term. I plan to follow this closely and will post information once the new guidelines are issued.

Boy do I sympathize with your description of pre-ADT problems peeing.  It was a a big relief (no pun intended) how quickly the first ADT injections fixed that problem for me.

Good luck -  I'll be looking forward to hearing how it all works out for you.

 

 

Rickey001
Posts: 4
Joined: May 2013

I also had the same choice to make that you are having to do. After talking to both the Surgeon and the Radiation Oncologist(who both said I would get better results fron radiation)I began a series of 45 concentrated radiation treaments, that began in 12/2011. The radiation was directed toward only the tumor on my prostate. After the radiation treatments, I then began Elegard injections every 4 months. Currently my PSA's are as close to 0 as is statistically possible. I get my 5th Elegard shot later this month.

The radiation treatments were brief and there was no overt discomfort from the radiation per se. The thing that got me was they made me drink at least 24-30 ounces of water about 30 minutes prior to the treatment. I was having trouble holding my water anyway,due to the cancer, so you can imagine what it felt like if there was any delay what so ever in getting the treatment. After the treatment, I literally ran to the bath room.Wink

The follow-up homone therapy does have some very aggravating side effects: easy fatigue,loss of sexual desire with erectile dysfunction, hot flashes, mood swings and depression. My wife says it's like going through Menopause.

I dont know if this helps any. I am attaching an article for you read, concerning radiation followed by homone treatments, which might be helpul.

Best Wishes..

Radiation Plus Hormone Therapy Extends Life in High-Risk Prostate Cancer

But, surgery might even improve survival more, expert says

By Steven Reinberg
HealthDay Reporter

WEDNESDAY, Nov. 2 (HealthDay News) -- A combination of radiation and hormone therapy prolongs survival among men whose cancer has spread beyond the prostate, Canadian and U.K. researchers report.

These men have what is called high-risk, or locally advanced, prostate cancer. Among men with prostrate cancer, up to 25 percent fall into this category. In the past, these men have often been treated with hormone therapy alone, the researchers noted.

"In patients with locally advanced prostate cancer, combining radiation therapy plus hormonal therapy gives much better results than hormone therapy alone," said lead researcher Dr. Padraig Warde, deputy head of the Princess Margaret Hospital Cancer Program and a professor of radiation oncology at the University of Toronto.

"Specifically, it reduces the risk of dying from prostate cancer 43 percent and the risk of dying overall by 23 percent," he said, adding that this is the first study that shows that the combination of radiation and hormone therapy improves survival.

"These patients were often felt, in the past, to be incurable, because the disease has spread locally outside of the prostate, but not elsewhere in the body," he said. "But they shouldn't be discarded, we are showing that going for a cure is worthwhile."

Treatment options for patients with locally advanced prostate cancer are limited, Warde said. Most of these patients are not candidates for surgery because of the size of their tumors, he said.

The report was published in the Nov. 3 issue of The Lancet.

For the study, Warde's team randomly assigned more than 1,200 men with high-risk prostate cancer to hormone therapy alone or in combination with radiation.

After seven years, 66 percent of men who had hormone therapy alone were still alive, compared with 74 percent who received both hormone and radiation therapy. In the group of men who had hormone therapy alone 26 percent died from prostate cancer, compared with 10 percent who had combination therapy, the researchers found.

Warde noted that while men had the predicted side effects of hormone therapy, such as erectile dysfunction, hot flashes and mood swings, the addition of radiation did not affect overall quality of life three years after treatment.

When the study began in 1995, the protocol was to use hormone therapy for life, and radiation was given in lower doses, but not as precisely directed as it is today, Warde said. Currently, hormone therapy is used for a shorter time, usually two to three years, and radiation is given in higher doses but more specifically targeted to the tumor.

"There is reason to think that with modern radiation approaches that the results would be much better," he said.

Prostate cancer expert Dr. Anthony D'Amico, chief of radiation oncology at Brigham and Women's Hospital in Boston, said that "this doesn't change practice, because we already do this, but it's a validation that you cannot leave out one or the other treatment when treating someone with locally advanced disease."

Dr. Matthew R. Cooperberg, an assistant professor of urology at the University of California, San Francisco, and author of an accompanying journal editorial, said that "high-risk disease needs to be treated aggressively."

However, this study doesn't determine what is the best treatment for high-risk prostate cancer, Cooperberg said. "There are studies showing that the best treatment for high-risk disease starts with surgery and then radiation and hormones as necessary," he noted.

"Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer."

These patients are not candidates for what is called active surveillance, where doctors wait for the disease to advance before treating it, Cooperberg said.

Cooperberg also noted that the urinary side effects from radiation are not as mild as the study suggests, and can, for some patients, be severe

Mounty
Posts: 36
Joined: May 2013

Thanks Rickey, in fact this does help. I'm not a candidate for hormone therapy by itself over the long term (at least not yet) but it's good to know the combination of radiation and hormone therapy can be pretty effective.

I'm jealous of your statistically close to 0 PSA, and I hope it stays that way. 

So far I've been lucky to have avoided most of the side effects of ADT.  I almost peed in my pants though when I read  you have to drink up to 30 ounces of water.   Sympathetic reaction I guess . . .

Best wishes

tp23
Posts: 11
Joined: Apr 2013

Mounty -

     While I wish our circumstances on no one, it is reassuring and helpful knowing the recommendations that others facing similar challenges are receiving from completely unrelated, independent, health care professionals, even from different specialties.  I find the differing recommendations from your urologist and radiological oncologist refreshing in the sense that both truly seem to be putting your interests first and foremost.  Not even from just the financial standpoint, but from the philosophical aspect.  I'm sure other doctors might believe their specialty superior.  I have a consultation scheduled with a urological oncologist at a University cancer center in about a week.  While I have already decided on my current course of treatment and urologist, I would like to affirm my decision with another opinion and gather even more information on the treatment options available to me after the surgery, especially those that might only be available at a facility specializing in cancer treatment.  I hope to hear of your success story in the near future.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I am sorry for your diagnosis.

Not much to ad, but I suggest that you find a medical oncologist , the best that you can find to lead your medical team. Actually there are about 50 in the United States that specialize only in prostate cancer.

Remember that there are local support groups that you and your wife can attend....USToo and MAN TO MAN are two international support groups that you can google to determine a meeting time.

A good idea is to post your geographic location here..........hopefully others in your area can give direction of the best docs in your area.

Obviously you are doing research, continue......read books, internet, continue interviewing doctors.........and read some more.

 

 

Mounty
Posts: 36
Joined: May 2013

Thanks for your advice Hopeful.  I met with a medical oncologist last week to discuss possible participation in a clinical trial that involves chemotherapy but he did not propose treating me if I decided against participating. In fact I'm doctorless at the moment and I will explore the feasibility of your suggestion to hire a medical oncologist thoroughly (and I'll also check out support groups).

At the moment I'm reading "Dr. Walsh's Guide to Surviving Prostate Cancer", which my wife bought for me. As you probably know better than most (considering how long you've been an active member of the forum), this book has been mentioned in other posts as well.  Although I suspect there are other books out there that are equally as good, reading this one has been a valuable exercise and I recommend it to anyone reading these posts, especially if they're also newly diagnosed. It's clearly written, has detailed information about many aspects of diagnosis and treatment and it's answering a lot of my questions - sort of like a consult with a physician that lasts two days instead of an hour or two (and is cheaper!). This is beginning to sound like a commissioned book jacket blurb so let me just say that I had never heard of Patrick Walsh or his book until it arrived at my doorstep a few days ago.

Thanks again, and best wishes . . .

Mounty
Posts: 36
Joined: May 2013

Thanks again TP,

Your insights into the differing opinions I've received is right on the mark.  I think the disagreement between these docs about treatment plans  is mostly related to the relatively few patients they treat with more advanced disease, which makes it more difficult for them to know for sure how to proceed.

Under the circumstances, the more information the better of course. If you're up to it, I would like to hear what the urological oncologist you will visit later this week has to say.  I'm scheduled for a consult with a urological oncologist at a university cancer center (not the same one I visited last week) on Thursday and I'll post what I learn on Friday after I return home.

I learned something else at my consult last Friday that might be useful to know. Although the community practice urologist I've been seeing did a great job with the biopsy, he made some serious mistakes in other respects , none of which will have negative effects in the long term, but they could have if they had not been caught by the academic cancer center oncologist I met with on Friday. I won't be going back.  I'm sure there are community practice physicians who are up to the job, but for guys with our parameters, I think it's a good idea to look for treatment by doctors at a major academic cancer center if this is possible.  I suspect you knew this before I did, but in case not . . .

I've read other posts you've made for other members and they've also  been helpful.

Take care

 

hopeful and opt...
Posts: 1293
Joined: Apr 2009

http://csn.cancer.org/node/257782

 

Except for some exceptions, in my opinion most  academic center iare the best place for treatment...overall best docs and facilities....you are making some good choices...you will do fine.......

US news and report ranks hospitals by specialty.....you can google this

Mounty
Posts: 36
Joined: May 2013

Thanks Hopeful; this was a valuable thread considering how similar Kc's husband's cancer profile is to mine and a few other members of this forum. Kc's wife hasn't posted again since her original post. I hope things are going well for them.

I'm familiar with the U.S. News and World Report rankings. There's been some discussion of the validity of these rankings and I'm somewhat skeptical.  Other rankings from the National Institute of Health may be more accurate.  I'll try to dig this information out and post it in the next few days.

Best wishes

tp23
Posts: 11
Joined: Apr 2013

Mounty -

     If you wouldn't mind sharing, what types of mistakes did your original urologist make?  I'm relieved to know that it will not affect you in the long run, but I'd just like to know what I might want to watch out for.

     I'd be happy to fill you in with any new information I learn after next week's mtg with the urologic oncologist and would welcome the same from any consults you arrange.

 

Hope all is well for now.  How's your wife and family holding up?

Mounty
Posts: 36
Joined: May 2013

Hi Tp:

Apparently my urologist without much evidence initially concluded that benign prostatic hyperplasia (BPH) was the cause of the hematuria and high PSA detected in my initial bloodwork. The studies he performed were focused on testing this possibility, despite my extensive family history of PC and what he described as a "somewhat firm" prostate (which was subsequently described by another urologist as "extremely impressive and extremely hard") (I always wanted to be impressive at something). Consequently the first urologist neglected to perform studies that would more adequately address the possibility of cancer  until he eventually performed a biopsy. This left holes in my medical history that other physicians now must fill. No long term problems, but in the short term I was left with an extreme urination blockage problem that was treated with drugs for BPH that were totally ineffective, including during a period of two weeks after the biopsy. Although the biopsy results arrived in this physician's office 2 days post biopsy, the diagnosis was made and treatment initiated two weeks later. None of these specific problems should effect you since you already have your diagnosis. They suggest however a certain amount of carelessness that I think is less likely to occur at a major cancer center where you're more likely to be treated by a team of physicians.

 I had to cancel my consult scheduled for Thursday but I'm on track for an MRI in the morning ordered by one of the physicians I consulted last week.  I'll post the outcome since it might be informative for you.

My family (wife and two daughters in their early - mid twenties) are handling all the commotion well. That's not to say that it isn't tough for them, but my spouse is incredibly supportive and we're both working hard to make it easier for our kids by accentuating the positive. You're quite a bit younger if I remember correctly and I think I recall reading in a post you made in another thread that you have children too.  How are they doing?  There aren't many posts that I've found that deal with the impact of PC on our kids - this might be worth talking about at some point.

I hope you and your family are well and I'm looking forward to hearing about your results.

Take care

hopeful and opt...
Posts: 1293
Joined: Apr 2009

have a Tesla 3.0 magnet?

Mounty
Posts: 36
Joined: May 2013

Tp,

When I showed up for the MRI this morning I discovered it was scheduled for yesterday, not today, so I must wait until Monday for the next chance. I would like to blame this on  cognitive decline associated with the ADT drug I've been warned about but in fact I have no excuse. I'll let you know next week; good luck with your appointments and please post the outcome.

Hopeful, I think it's a Tesla 3 imager (I hope it is) but I'm not sure.

Take care

hopeful and opt...
Posts: 1293
Joined: Apr 2009

 MRI  with a 3.o Tesla Magnet provides superior resolution that could substantially improve prostate cancer detection. Will a multi parametric MRI be performed?......Mounty, suggest that you call your doctor.

 

Mounty
Posts: 36
Joined: May 2013

Hopeful,

Your posts convinced me I needed to look more carefully at this issue and so I did;  as a consequence I canceled the MRI rescheduled for next Monday, which would have been on a 1.5-tesla machine, until I've had my next consult.  It's absolutely clear that 3.0-tesla MRI provides superior resolution and can impact outcome for patients with low or intermediate risk disease, although my reading of the literature is that the jury is still out on whether multi-parametric MRI is even better.  What's not clear to me yet is how important high-resolution MRI is for a high-risk patient like me who almost certainly has extraprostatic disease with a likelihood of micrometastases as well. How do you think the information it would provide would impact a treatment decision under these circumstances?

 

hopeful and opt...
Posts: 1293
Joined: Apr 2009

Your  right about the Multi-parametric MRI....it can be used to find suspicious lesions and then have a targeted  biopsy, but in your case this is not necessary, since the aggressive cancer has already been found. Also since this is relatively new not all personnel are skilled in administering and interpreting the results...( best to use a a high volume center)

It's good that you are looking carefully into this, as you need to do for everything.

Your mentioned in a previous post that high grade disease was found in your prostate....you did not mention the amount of involvement, the percent of each  of the cores that were positive. The greater the involvement the more likely that the cancer is outside the prostate.

The MRI with a Tesla 1.5 is pretty good, but does not give as fine a resolution as the Tesla 3.0. Is it possible that the 1.5 may not detect extracapsular extension that the 3.0 will do.....( ( Yes it is highly likely that your cancer is outside the capsule. The MRI with a 3.0 will more likely give confirmation, and my layman's opinion will show where and how much cancer there is to help in targeting treatment( in some cases).

There are super duper PET SCANS that are avalaible now with NEW materials to determine where and how much  cancer is in the lymph nodes, if any.  There is one in Arizona,

"

A Superior Technique to Image Recurrence 
                of Prostate Cancer 
 

 

Dr. Fabio Almeida will present the results of research with PET/CT scans using a new agent. Such scans typically used tumor affinity for glucose. Instead, Dr. Almeida uses C-11-Acetate that preferentially seeks a substance called FAS which is over-expressed in many tumors, including prostate. This new technique shows great promise for earlier detection of recurring prostate cancer. 

Management and treatment of recurring tumors depend strongly on whether the recurring tumor cells are in the prostatic bed or outside the prostate area. Rising PSA is an indicator only of general tumor recurrence. However, the PET/CT scan using C-11-A can accurately discriminate between distant metastases and local recurrence, thus permitting an optimum treatment choice. 

Dr. Almeida is the Medical Director, Arizona Molecular Imaging Center in Phoenix

, AZ. "  

 

  There is also one at the Mayo Clinic that uses 11C]choline with similar dectective ability.

http://prostatecancerinfolink.net/2012/11/04/more-on-11ccholine-petct-scanning-in-men-with-recurrent-prostate-cancer/

If you decide to get one of these PET Scans, go to the center that is closest to where you live since the ability to detect is the same.

PS  These PET SCAN may not be medically covered. You will have to check.

 

 

 

 

Mounty
Posts: 36
Joined: May 2013

Hello Hopeful,

Turns out the magnet of the machine I was signed up for is a 3.0-tesla, not 1.5. Of course I learned this after I had the appointment on Monday canceled. Not a problem though - I'll have another consult on Monday, which will undoubtedly provide more clarification, and eventually I'll have the MRI.  At an earlier consult a urologist suggested a PET scan but the next doc I met with was not enthusiastic for reasons that I don't remember.  I'll be seeing this doc again on Monday and I'll keep track of his answer this time.

I was diagnosed two weeks ago with an initial PSA of 34 and a biopsy with 14 of 14 positive cores, all between 50 and 100% malignant. Earlier I posted that a few of the cores were 3 +3 but this must have been wishful thinking - they're all 4 + 4 or 4 + 5 with a grand total score of Gleason 9 (4 + 5). The cores were examined a second time by pathologists at an NCI Comprehensive Cancer Center and they concurred with the earlier read.

Many of the posts to this forum have been enormously helpful since I received his diagnosis but yours and a few others have been exceptionally helpful, in this thread and others. I especially like the positive attitude you convey, which I share.

 

 

 

hopeful and opt...
Posts: 1293
Joined: Apr 2009

Basically, I have found that it is important to avoid stress, live in the present, not the past or future...basically enjoy the moment. I look for positive things to do, and do them.I work at having an upbeat attitude, at being positive...I look for the bagel, not the hole.

When we are diagnosed we all go through shock and all the negative emotions that go with it for the first 2 to 3 months. this will significant lessen. I for one find that learning about PCa and helping others with PCa help me a lot. In many ways my diagnosis has been a positive experience.

Tape recorder....I suggest that you bring a tape recorder to your doc meetings and ask if you can record the conversation...also bring your wife or a trusted friend or advocate.

Even though your cancer is aggressive, it is manageable, and you can have many years of life ahead of you.....there are many examples of men who are doing just this.

I had mentioned to you to have a Medical Oncologist lead your medical team. I also had mentioned that there are not many of these Medical Oncologists who specialize in Prostate Cancer. I now remember where I saw a list of MO's that specialize only in Prostate Cancer....there is a book, "Invasion of the Prostate Snatchers: An Essential Guide to Managing Prostate Cancer for Patients and their Families [Ralph Blum, Mark M.D. Scholz]"

Although this book is not oriented toward more aggressive prostate cancer and is oriented toward active surveillance for low aggressive disease, I beleive that there is a list of Medical Oncologists who specialize in Prostate Cancer at the back of the book.( I don't have this book in front of me since I borrowed it to read, however another member of our club who posts here may be able to validate this source.

P.S. don't forget to take some time off from this, and spend some quality time with your family. You will do fine.

 

 

Mounty
Posts: 36
Joined: May 2013

Hopeful,

More sage advice - thanks again. "Invasion of the Prostate Snatchers" is another book my wife bought for me and I  read it cover to cover this weekend. Very informative, and even entertaining at times. I completely grokked (as my kids would say) the comment in the book by a PCa patient that hormone therapy transformed beautiful  women into something about as interesting to look at as couch upholstery.

I could not find in the book a list of the  fifty medical oncologists that specialize in prostate cancer. In any case I now have a stellar academic urologist from a NCI Comprehensive Cancer Center on board, someone I'm quite comfortable with running the show.

Best wishes . . .

hopeful and opt...
Posts: 1293
Joined: Apr 2009

is a Medcial Onocolist who specializes in Prostate Cancer. I heard him speak a few times at a support group that I attend. There are also other Medical Oncologists in practice with him in Marina Del Rey in CA.

If I were you I would do research for a Medical Oncologist...What are the credentials of the Medical Oncologist the hospital where you are a patient?.at the least you will get a somewhat unbiased medical opinion of a treatment(s)..but of course this is your decision.

I read the book Invasion of the Prostate Snachers that Kongo recommended at about the time that it was published. I felt that the first seven or eight chapters was my auto-biography. I personally came across all kinds of situations where some of the docs to put it mildly did not have my best interest at heart. Additionally since I am in So. CA. I knew about all the docs that were mentioned.

Samsungtech1
Posts: 350
Joined: Jan 2011

Had Sam conditions as you.  Urologist said surgery, radiation,and whatever.  Had surgery, broad spectrum radiation for bladder, biopsy for nodules in lungs, radiation for nodules in lungs, radiosurgery, and then HT treatment with Digarleix.  Currently PSA at 0.000.  Been on HT for a year now.  Not sure wheit cancer will figure outs a way around it, hopefully awhile. 

Everyone is different.  It worked for me, but that is just me, and we knew it had spread. If it has not spread to lymph nodes you have a good chance.  

Mike

Mounty
Posts: 36
Joined: May 2013

Thanks for your input Mike.  It sounds like you've had a tough row to hoe but the outcome is pretty good at the moment.  I hope it stays that way.  In any case, knowing that you're doing OK at this point is encouraging.

Best wishes

tp23
Posts: 11
Joined: Apr 2013

Mounty -

     Your memory's not so bad after all - I just turned 50.  3 children - daughter & 2 sons, 25-21-16.  The news hit both my wife and I pretty hard - a lot of sleepness nights at first.  We sat the kids down and briefed them - less the nastiest of details.  With boys it's tough to tell what's going on - we generally don't open up about much unless provoked.  According to my wife, the youngest went online to research what we were talking about but hasn't posed any questions to me.  He's at that age when teens don't want to speak with their parents because it just isn't cool - so the silence for me, except for the joking and ridicule, is normalcy.  With my older son, I'd rather sit down and watch a show we both enjoy and share a laugh or two - it helps take the mind off reality for a few minutes.  My daughter's reaction perplexes me.  She is a physical therapist so she is familiar with the medical field - 3 years of medical school will do that.  I know her and my wife have discussed the details and cryed their way through, but she refuses to spend time reading up the way we have.  She's told my wife she doesn't want to know the data and statistics.  She trusts that we've done enough research for all of us, that we're making the best decisions we can, and just wants to know what she can do to help.  Interestingly enough, when we were speaking one night, I was asking about exercises for prostate cancer patients - I read that there are some recomended exercises to help improve continence and general receovery (Kegels, mild core strengthening, etc.).  She mentioned that one of her clincal rotations included a stint at a hospital doing in-patient work where she found that there is a whole discipline of physical therapy associated with urology patients to aid in recovery and quality of life.  My wife has come around.  She wants to focus on the short term - no more crying.  We're digesting all available info, making decisions, and moving forward one day at a time.  We really don't have a full picture just yet anyway - probably won't until the prostatectomy's done & the path report comes back.  Long & short of it, everybody has to deal with this harsh reality in their own way.  I don't think I personally bottomed out emotionally yet.  I refuse to slow down and give in, mentally or physically.  I've got to work hard to provide for my family, probably even more so now.  Once surgery comes along and other treatments are required, I might not be able to work at full potential.  Slight setback for my wife though.  Her brother was just diagnosed with tonsil cancer last week and had surgery today.  Petscan showed cancer contained within tonsils & lymph nodes, so they think they got it all.  When it rains it pours I guess.  Sorry to bore you with all these details, but to be honest, checking this thread has become a bit of a respite for me.  Let's call it cheap therapy!

Mounty
Posts: 36
Joined: May 2013

Tp,

Your post was not boring.

I'm relieved to learn your children are not much younger, which I think would increase the difficulty of the situation for everyone involved. I wish the best for your wife's brother.  You and your wife must desperately need a vacation about now.

My wife and I are taking an approach similar to yours with our twenty-something kids - briefings minus the nastier details as you put it. I concluded a long time ago when I was the same age and in a similar position as my kids (and your older children) are now in that it's best for parents to be honest with their children regarding unpleasant but unavoidable medical truths. So we told our kids I have an advanced, very aggressive cancer that makes treatment more complex. My wife and I emphasize, however, that it is curable and this is the basis for a great deal of hope for the future. We do not discuss statistics or prognosis with them since the less hopeful outcomes these statistics suggest remain potentially avoidable.  Like your kids, ours are poking around on the internet for more information (they may have already found this thread!) and so I  also remind them that statistics apply to groups, not individuals. In general we try to share with them the same positive but realistic attitude we have, and injecting a little humor into the situation helps (as you've probably discovered as well, despite everything there are times where things turn ridiculous to the point of being funny).  If at some point we learn that metastasis has occurred, we will tell them and let them know that realistically this means I will not be cured.  We won't discuss the  implications this has for survival curves and I will emphasize instead that even with metastatic disease I could very well be around for a long time. The issue for me isn't whether they have the emotional maturity  to handle bad news - after all, they're young adults. Rather, I don't want them to be unnecessarily worrying about hypothetical negative outcomes that are still avoidable. I  think this approach would probably need to be modified for much younger kids who have  less  understanding of cancer, but I suspect this approach (since you're taking it too) is probably working for your teenage son. Similar to your younger son, my kids are sometimes relatively incommunicative but I'm not worried -  it can take time to process all this stuff. My hope is that with this strategy they will eventually reach the same point that your  daughter has reached - that is, trusting the details to us so they can focus on what they need to do to succeed in their own lives.

I haven't completely bottomed out emotionally either. Occasionally I enter a downward spiral that takes me into what seems like a bottomless pit. It helps when climbing back out to know this downward spiral may have been accelerated by the ADT. Although you and I share similar medical histories, I'm 10 years closer to retirement than you are, which probably makes the future  easier for me to contemplate. I love what I do for a living (I'm a scientist) but it's also very stressful and getting rid of stress  trumps the enjoyment of doing science at this point - so I will retire as soon as I can.

I'm also very lucky to have a couple of  close friends with whom when I need to I can discuss both the good and the bad without worrying that the bad will drag them down into the pit with me, which could happen more easily  with my spouse. I hope this is the case for you too, but in any case, I would be honored to take  the job. The fact is we clearly have more in common than just prostate cancer and your posts have been very therapeutic for me as well.

Take care, and have a good weekend

tp23
Posts: 11
Joined: Apr 2013

Mounty -

     Thanks for the offer - good cheap therapy is hard to find these days!  And I hope you realize the same offers stand here.  We were all relieved to learn that my wife's brother is doing well.  Even with all that stuff removed (tonsils, lymph nodes, etc.), he was released within 48 hours.  He is speaking well and resting comfortably at home.  He will have to undergo radiation but the prognosis is good.  With that worry somewhat behind us, as I flopped into bed last night, out of the blue, my wife asks if I'm nervous about the upcoming consult on Tuesday.  Well, if I wasn't nervous enough up to that point........  I thought before I responded and then siad - yes and no.  Well, what do you mean by yes and no she asked.  I told you us guys don't open up very well.  She continued that for now, she looks at me and I appeaar perfectly normal and now that bubble might be burst by the next bit of bad news.  While I am nervous about what he might say, the flip side is what worse news can he offer at this point based on the info at hand.  Fact is, I am ready to move forward.  If he concurs with my urologist, and my urologist sees no real benefit from waiting for the hormones to act any longer, I'd prefer to get this thing out, do the recon, and keep moving forward.  The sitting and waiting, contemplating, second guessing - that's more troublesome to me.  We went shopping with my daughter and her husband (they were just married in October 2012) for some supplies for their new house at Home Depot last night.  I'm a civil engineer working as a construction project manager (talk about a stressful job) so anything involving home improvement is like therapy for me.  Heck, just walking through Home Depot is like being a kid in a candy store for me.  I figured it would keep my mind occupied and help them cross some things off their list at the same time.  She didn't want to ask me for any help since I was diagnosed, but I told her to get me while she can.  I figure I might be limited in climbing on roofs or in attics for some time after the prostataecomy.  Have a good weekend yourself - Happy Mother's Day to all!

Mounty
Posts: 36
Joined: May 2013

Tp,

Your counteroffer is accepted.

I'm also planning to spend time on home repairs, but on our own house.  We plan to downsize within the next year.  I'm not very good at home repairs but I  enjoy making them and Home Depot helps make it easier.

My walk to work each day these days takes me past a giant hole in the ground that will soon become the basement of a new hospital.  Now I'll be wondering if you're one of the guys directing construction.

I'll be very interested to learn about your consult on Tuesday. It's been quite difficult for me to reach a decision on surgery vs. radiation, especially  because I'm being told by surgeons to go with radiation and by radiation oncologists to go with surgery.  My next consult is on Monday with a surgeon and a radiation oncologist.  I'll post what I learn shortly after.

I hope you and your wife and family have a wonderful Mother's Day.

 

 

 

caseyh
Posts: 63
Joined: May 2002

Ricky 001's post above qutoes Dr. Cooperberg, "Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer."  The study referenced is the only study that I know of that looks at survival time and not just the rise in PSA.   The study finds surgery to be the most effective treatment followed closely by a combination of IMRT & Brachytherapy.  The quote makes reference to the fact that for men with high-risk disease, surgery must be combined with another therapy to yeild the desired results.  Presently, there sre few choices for the second modality, and most men choose radiation.

This science indicates that the best treatments for long term survival with high-risk disease presently boils down to surgery plus a second modality (most likely radiation), or combined IMRT and Brachytherapy.  Men with high risk disease need to dismiss the idea of a single therapy.  Should you choose surgery, the good news is that the second modality might not be needed immediately and possibly not at all.  Pick a cancer center that will use imaging capable of tracking your disease.  The risk of recurrence will be very high.  It will take 10 years before you can relax, and even then, recurrence is still possible. Should you choose radiation, the combined therapies will take about 10 to 11 weeks.  Check the center's statistics.  You should be looking at around 80% treatment success at both the 10 & 15 year mark.  According to the Cooperberg study, either choice should serve you well.  Feel free to contact me via CSN email if you have additional questions.

I wish you success on your journey.

 

Mounty
Posts: 36
Joined: May 2013

Thanks Casey,

In fact I will  pursue a multimodal therapy approach.  At this point the options proposed  are 1. RT + androgen deprivation therapy (I'm already undergoing ADT) and 2. Surgery + RT + ADT (or perhaps surgery + ADT). 

The Warde et al. study cited in the article Rickey posted (and this study is also the subject of Cooperberg's Lancet editorial) clearly points to a better survival outcome for RT + ADT compared to ADT alone.  However, in my case, ADT alone is not on the table. What I have not yet been able to find is  evidence that surgery + RT + ADT is likely to provide a superior outcome compared to RT + ADT. Although Cooperberg implies in his interview that the evidence exists, his editorial simply points out that this question remains unanswered, mostly because it's tough to address it in a randomized trial similar to the trial Warde et al. reported for RT + ADT vs. ADT alone. I'm confused by your statement that "This science indicates that the best treatments for long term survival with high-risk disease presently boils down to surgery plus a second modality (most likely radiation), or combined IMRT and Brachytherapy". You appear to be referring to the Warde et al. study, but neither surgery nor brachytherapy were addressed in this study.  I would be grateful if you could steer me toward the study you were referring to in your post, as well as any other studies that suggest a multimodal approach that begins with surgery provides a better outcome.

It's certainly encouraging to hear from guys like you who have been in this business a long time. I hope things are going well.

Thanks again, and best wishes.  I was thinking of emailing you with these questions but perhaps this exchange will be interesting to other members of the forum, especially those who also have high risk disease.

 

 

caseyh
Posts: 63
Joined: May 2002

Mounty,

Perhaps I did not state my points clearly.  Here are a few direct quotes from Dr. Cooperberg:

 “For intermediate- and high-risk cancers, both survival and cost generally favored surgery over other forms of treatment -- although combination external-beam radiation and brachytherapy together were comparable in terms of quality of life-adjusted survival for high-risk prostate cancer.”

“There were no statistically significant differences among surgical methods, which tended to be more effective than RT methods, with the exception of combined external beam + brachytherapy for high-risk disease.”

Rickey001's post:
“However, this study doesn't determine what is the best treatment for high-risk prostate cancer, Cooperberg said. "There are studies showing that the best treatment for high-risk disease starts with surgery and then radiation and hormones as necessary," he noted.
Men with high-risk disease need multi-modal therapy," Cooperberg said. "Whether the approach should be surgery possibly followed by radiation, is still the big open question that we need to answer."
I believe that Cooperberg is stating that although other studies have concluded “that that the best treatment for high-risk disease starts with surgery and then radiation and hormones as necessary," he does not have the evidence to make that determination in this study.

Dr. Peter Carroll, chair of the UCSF Department of Urology and leader of the Prostate Program at the UCSF Helen Diller Family Comprehensive Cancer Center. Carroll is senior author on the paper. states, "This is a clear signal to the physician community that prostatectomy should be considered for men with higher-risk prostate cancer. In many cases, surgery would be part of a multimodal treatment approach, including adjuvant radiation or systemic treatments based on the pathology and early PSA response."

Both Dr. Cooperberg and Dr. Carroll agree that multimodal treatment is generally appropriate for men with high risk PCa.  Dr. Caroll indicates that adjuvant radiation or systemic treatment might be appropriate in certain cases.  I did not mention systemic treatment, including hormones, because although it might be appropriate in some cases,for the most part, these treatments are not curative. Hormones do enhance patient's response to radiation.  Presently, I don't know of any mainstream therapies other than radiation (including HT), that are potentially curative and being used for multimodal treatment.  There are not a lot of choices.

I hope that this clears the any confusion that may have resulted from the above post.

I am impressed with your ability to systematically examine your options at a time of great stress in your life.  I wish you good luck and  a successful outcome.

Casey

 

Samsungtech1
Posts: 350
Joined: Jan 2011

We all hate it when they tell us what it really is.  This is usually after surgery.  Anyhow my main recommendation is tell your children to not surf the web.  Basically it will tell them your survival stats.  VA said I would make it 2.88 years.  Now at three years, but can not say how much longer I will be here.  At least I beat their estimates.  Most estimates give stage four about five years at most.  At first it seems so short, but you begin to realize how great time is.  If you sit around worrying time will go slow. Myou live it, and it will go fast. Live your life.  Enjoy it.  Be selfish, if needed, because it is your life.  

Good luck,

Mike

Mounty
Posts: 36
Joined: May 2013

Seriously Mike? Tell my twenty-something kids not to surf the Web?

I'm kidding of course and I understand your reasoning, even if it's impossible to apply it. The fact is, telling my daughters not to surf the web for information relevant to my disease would be like telling  them to join a convent.  It ain't gonna to happen.

What I do tell them is that they have to remember that statistics applies to populations, not individuals. You're a good case in point, because you're beating the odds. I suspect your attitude toward life in general is partly responsible.

Best wishes

 

 

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

That's kind of where you are.  When I was diagnosed the robot just csme out.  My doc only did cut n stitch. No discussion of seeds chemo etc.  I found 2 DaVinci surgeons.  One in Austin Tx about 3hrs away and one in Houston(55 miles but still about 3 hours)  In my research at the time one of the leaders was at the Ford Clinic in Cleveland OH.  He knew both surgeons and sent me to Austin.

We went thru the surgery, is was confined and no other treatmentn needed.  I got my PSA checked every quarter for  a few yead noe twice a year, always less than .01 Labs dont like to say 0, guess its a CYA.

I've had not many problems with incontinenct mostly when I drink beer or am excercising.Im also not able to have an erection of any size but do hae the sensation. I  Have not had to do anything else.

I'm really lucky, I've had 10 years of not problem.  I see many guys protest that it'll be the end of the world if they can't have sex, yes it's nice but breathing is better and I wake up on the green side of the grass every day.

Do your home work, be pushy in your quetions just don't accept everything you're told you'll never be 100% sure of your choice but rsearch the best you can and go forward.  Good luck jj

Mounty
Posts: 36
Joined: May 2013

Great imagery Jim,

One of my docs described my prostate as "extremely hard". Another one suggested I must have a rock for a brain because I skipped a few years of PSA tests. So there you go - most of me is truly between a rock and a hard place.

I appreciate your comments. I understand your remarks about sex. In fact I'm relieved that the strong sex drive I've enjoyed has been at least temporarily tempered by hormone treatment. It  makes it easier to focus on issues that at this time  are more important. I would point out however, that this is easier for me at 61 than it would be if I were younger. I feel very badly for guys who are going through this in their 40's and 50's and even earlier in their lives.

I want to emphasize how valuable it is to those of us recently diagnosed for you and others to tell your stories about long term success with this disease. You may or may not recall that the initial diagnosis appears to be a sentence to a rapid and painful death. Of course this isn't true, but guys like you make it easier to understand this quickly.

Best wishes

tp23
Posts: 11
Joined: Apr 2013

Mounty -

     I had a consult with a urological oncologist today - major cancer center, credentials out the wazoo.........  He concurred with all my cuurent urologist's recommendations and course of treatment.  And then he performed a DRE and immediately concluded that my prostate was too hard - like a rock - and that he would not operate on it.  When I pushed as to why, he gave up only a bit more but basically stated it was too fixed and there would be way too many complications in trying to remove it. He understood my urologists's thoughts regarding the use of ADT to improve the chances of a successful surgery, but in his mind it just isn't going to happen.  Now in all fairness, my urologist did say he would not attempt to remove it when I first started treatment - he said the same thing - too much collateral damage.  My urologist's hope, and mine, (apprarently false hope) was that the bicalutamide and Lupron would shrink the tumor and make surgey a viable option.  Well my symptoms have improved, but I guess not to the point where surgery is even an option.  Well, when I go back to my urologist on Monday for my next Lupron injection, I'm curious if he will now come to the same realization as today's specialist did.  My biggest concern now is that my urinary symptoms have greatly improved thus far, and I thought the RP would help alleviate them long term.  If the urinary symptoms recur after radiaition without surgery, there's not a lot of options left.  Felt like I was dealt another punch to the gut today.  Even if another urologist was to tell me they thought they could remove it successfully, I don't think I could be comfortable moving forward hearing what I heard today.  At my age and at my level of activity, incontinence is just not a realistic lifestyle option.  Seems like we're back at square one again.  What's worse is that we were just getting over the intitial shock - and now my wife's fear about going to this consult has been realized.  Frankly, I think I'm more distraught now then I was when I was first diagnosed.

     Didn't you have a consult scheduled for yesterday?  Any good news to report?

Mounty
Posts: 36
Joined: May 2013

Tp,

I feel badly for you.

In fact I did have another consult yesterday and the outcome was remarkably similar to yours, although in my case I wasn't surprised - based on  earlier consults things were clearly headed in this direction. I think I can allay some of your concerns however and I'm anxious to explain why.  Unfortunately I'm on kitchen duty this evening and so I won't be able to respond for another few hours.  Once I'm finished, I'll be in touch again, this time by email.

Best wishes

Mounty
Posts: 36
Joined: May 2013

 

It's been two weeks since I asked for help from this forum deciding whether surgery or radiation + hormone therapy is the best course of treatment for the prostate cancer I was diagnosed with in late April. After numerous medical consults and valuable advice from many of you and other friends, I've arrived at a decision about treatment. I’m going to describe this decision and the reasoning behind it with the hope this information may help others with similar cases of high grade localized prostate cancer.

 

A brief summary of my recent medical history: I'm 61 and in very good health other than PCa. There's a family history of PCa (father and one brother).  Gradually escalating symptoms of urinary blockage for several months eventually led to bloodwork that produced a PSA reading of 34. A biopsy several weeks later detected 30 - 90% malignant cells in 14 out of 14 cores, all  Gleason grades of 4 + 4 or 4 + 5, leading to a Gleason score of 9 (4 + 5). A second read of the slides by a pathologist at a NCI Cancer Center was similar except that the fraction of malignant cells was increased to 50 – 100%. A bone scan and multiple CT scans have failed to detect metastatic disease in bones or in pelvic lymph nodes.

 

I consulted with five doctors after receiving the diagnosis from the community practice urologist who performed the biopsy - three were surgeons and two were radiation oncologists. All three surgeons were Chairs of Urology at major academic medical centers, including an NCI-designated Comprehensive Cancer Center. One radiation oncologist was the Chair of Radiation Medicine at the NCI Comprehensive Cancer Center. The other radiation oncologist practices medicine in a community practice setting. I'm lucky to have insurance that pays for multiple consults (although I did have to turn down one recommended consult because it was out of my insurance network).

 

I've also obtained an enormous amount of information from books, this forum and other internet sources that I trust (National Institutes of Health and other government websites and organizations such as the American Cancer Society) and from the primary medical literature - that is, peer-reviewed studies published in medical journals. In evaluating all this information I employed two criteria to define what for me would be an ideal treatment outcome, in order of importance: 1. long term disease-free survival; 2. a quality of life that includes the following ranked in importance to me - no urinary or bowel incontinence > no permanent loss of sexual ability > no long term side effects of hormone therapy such as diabetes, heart disease and breast enlargement (the last was a big one). In deciding on treatment I also considered logistical factors that mostly applied to radiation therapy, which would take place over a period of several weeks. These included the ability to be treated without a requirement to travel great distances each day or the need to arrange for temporary housing in a distant city for a period of many weeks.

 

Initially one surgeon recommended surgery and two recommended radiation + hormone therapy. The radiation oncologists rendered a split decision, one for surgery and one for radiation + HT. Recently the arguments for radiation + hormone therapy became so compelling that all these doctors now agree this is the best course of action for me. Their reasoning is that the combination of high Gleason score, high PSA, large tumor volume and digital rectal exams performed since the biopsy that strongly suggest extraprostatic invasion of the tumor into surrounding tissues all argue that surgery would be unlikely to remove all of the tumor and would carry a high risk of urinary incontinence. The argument for radiation therapy + hormone therapy for treatment of localized advanced disease is in my opinion supported by the medical literature.  Although some studies suggest (based on statistical analyses) that surgery might be the better option, many of these studies have been criticized by other experts as flawed. Other studies more clearly point to a small but statistically significant advantage to radiation + hormone therapy.   It's important for anyone reading this post to keep in mind that all of these considerations specifically apply to localized (i.e., not metastatic) advanced disease (Gleason 8 - 10 with evidence for extra-prostatic extension), and not less advanced prostate cancer.

 

Consequently, I have decided to pursue image-guided radiation therapy + hormone therapy at the NCI Comprehensive Cancer Center I visited for consults. I considered a number of other treatment modalities as well. These included brachytherapy (radioactive implants), high-intensity focused ultrasound (HIFU), Cyberknife and proton beam therapy. Although each of these modalities has proven successful in some cases, I ruled them out in my case for a variety of reasons, mostly related to a lack of a well-established track record for success for treating prostate cancer or because they were inappropriate for treatment of more advanced prostate cancer.

Please keep in mind that I'm describing what I think is the best decision for me; the best decision for others would need to take into account factors that are unique to other individuals, in addition to those that might be common to my case. I'm very grateful to everyone who posted valuable information to this thread and to many others who posted valuable information to other threads as well, all of which helped me to reach this decision.   If I didn't know any better, based on what I've learned from this forum I would argue that prostate cancer mostly afflicts people (men and women) who represent the best of humanity. I will continue to post  to other threads but I do not plan to post to this thread again except to respond to  questions, which I would be happy to answer.

 

Best wishes,

 

Bill (Mounty is my beloved dog)

 

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I am glad that you did research so you could make a decision that you are comfortable with.....I hope that this will bring peace of mind to you....wishing you the very best.

 

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

 

Bill (Mounty) and TP23

 

Your exchanging experiences made me recall the time when I was diagnosed, back in 2000. I also confronted the dilemma in choosing a treatment. Interestingly, I was given the same choices as that of yours (2013) and the same “views” in all aspects including the “sequentials” (salvage radiation after surgery failure, etc, etc.). However I was confronting a low risk diagnosis.
Not much has changed regarding the way doctors advice on radicals. These two forms of treatment are still the ones linked by most studies to cure, and in young guys like you (with long life spans ahead) these therapies are commonly recommended; however, the successes belong to cases of localized and contained cancer. This is also more common to low risk cases with low Gleason scores.

 

In fact the first though it comes to us is to get rid of the whole tumour “scrapping” it out or “zapping” it whole with rays. We will accept anything proposed by a well spoken doctor without realizing that most of the procedures are based on “guessing”, and the choice leans through wards the higher percentage of successes of past experiences. We forget about the failures and the consequences we will have to endure and live with. In high risk cases one should recall that “debulking” makes part of the decision process by the doctors and such idea has nothing to do with intent at cure but with intent in extending life and continuing sequential therapies. Failure may follow failure and the effects will superimpose the ones already existent.
Considerations to the Quality of Life in the initial decision process are important, and we need to think about the possibility of a life with the unwanted guest.

 

I am very please for your exchanging opinions and believe you have followed the best way to get into a conclusion on a treatment. This will help many reading your threads, even if the situations differ.
Your high risk status in particular, has been commented in this forum before but not to the extent you have done. I feel sorry for the lack of feedback from those G9 participants in regards to the accomplishments in their treatments. They would have been very useful to you and all us.

 

I wish you both the best of lucks in your treatments. You have done your “work” excellently and your choices will be the best you could get. They will lead your cases to success.  SmileSmile

 

Best wishes.

 

VGama  Wink

 

Mounty
Posts: 36
Joined: May 2013

Thanks VGama,

I was hoping you would weigh in to this thread with your good advice at some point.

The few posts to this thread from other patients initially diagnosed with advanced PCa was also a little surprising to me. There are fewer patients in this category though. Of course some of them may also need to focus on treatment. 

In any case, your comment reinforced the notion that it might be useful for other advanced PCa patients to know how someone with a similar case is faring beyond the initial treatment decision. As you probably know there are several patients in this category who recently joined the forum after recent diagnoses.  In the future I'll post my information as it develops to a new thread (at the moment there's a lull in activity while I wait for radiation to begin).

Given our remarkably similar cases, trading information with Tp has been especially useful to both of us. Tp and I are also trading emails about our various exploits unrelated to cancer but I think the plan is to continue to trade notes on our cases publicly with the idea this information might be useful to others.

I'm guessing you are not the famous Vasco da Gama I learned about in grade school but I'm wondering if you are also from Portugal, one of my favorite places on earth.

Best wishes,

Bill

 

Mounty
Posts: 36
Joined: May 2013

Thanks Hopeful,

I'm still at the very beginning of what promises to be a long and complicated process; I'll be looking forward to learning more things from you in the future.

Best wishes,

Bill

mrspjd
Posts: 688
Joined: Apr 2010

Hi Bill,

 

Welcome to the PCa forum.  I enjoyed reading your thoughtful and articulate posts.  Kudos for your insightful and enlightened perspective on PCa.  It’s obvious that you’ve taken some time to research and educate yourself about this insidious disease. 

 

In April 2010, I posted a question like yours: “Open RP vs RT + Hormones for high volume PCa."  When all the diagnostic test findings, 2nd opinion clinical consults and expert pathology lab results were in, my husband’s PCa dx was determined to be T3 stage, high volume (>75%) and locally advanced (i.e. extra capsular extension or ECE).  These and other disease features of his PCa dx made his GS 3+4=7 a high risk case.  Together, before a tx decision was made, we did a ton of research 24/7 (at least that’s what it felt like!) for three months, including attending face to face PCa networking group meetings (where we received some excellent PCa info).  Ultimately, PJD’s tx decision process and rational were somewhat similar to yours.  I’m happy to share that my husband’s PSA is consistently low with no evidence of disease.  He is healthy and doing very well with no long term tx side effects.  We continue to enjoy life to the fullest and are hopeful for the future.  I wish the same for you and your wife.

 

Congratulations on making a tx decision that is right for you, considering QoL priorities and PCa risk level. All the very best to you, your wife and family for a successful long term tx outcome.

 

mrs pjd

wife of a T3 stage PCa survivor

Mounty
Posts: 36
Joined: May 2013

Mrs. PJD.

It's one thing for someone on the cusp of a T4 diagnosis (T3c) to learn from doctors and medical journals about abstract theoretical possibilities for a healthy future. It's far more meaningful  to hear concrete evidence from people like you about individuals with similar cases who actually achieve this outcome, such as your husband. You made me a very happy guy this morning and I'm grateful. I wish you and your husband continued success.

Bill

mrspjd
Posts: 688
Joined: Apr 2010

 

Bill,

Re your post "...someone on the cusp of a T4 diagnosis (T3c)..."  If that’s you, I wonder how your T3 clinical staging was determined and the extent of ECE.  Although you mentioned an MRI was scheduled, it’s unclear if you had an MRI and received results.  Since your “decision” post only mentions results of a bone scan and CT, not an MRI, perhaps this was an oversight.  There’s a difference between an MRI and an EMRI (endorectal).  In some high risk cases (like my husband's), conventional bone scan & pelvic CT and even a standard MRI may be negative for distal & local mets. A 3Tesla EMRI may identify locally advanced disease in cases where high volume PCa tumor burden is present.  According to the NCI "...MRI with an endorectal coil appears to be more accurate for identification of organ-confined and extra capsular disease."

If you're clinically staged as T3c with locally advanced PCa, the extent of spread, i.e. seminal vesicle(s), and if local lymph node involvement is found/suspected, this info is important, especially with regard to the RT dose (Gy) and target planning by your RO and medical physicist/dosimetrist.

IMHO, with any GS =/> 7, along with features such as a high volume tumor burden, nodule or firmness found @ DRE, and PNI (peri-neural invasion) on biopsy, there may be a greater likelihood for local or distal mets or undetectable micromets.  While those PCa cases are considered high risk, not all are initially locally/distally advanced.  If caught early, some cases may still be organ confined.  When diagnostic test findings confirm T3 locally advanced disease in high risk cases, IMHO a well planned aggressive RT tx protocol is critical for best outcome—ideally, at a Center of Excellence using the latest modern technology/medical equipment by an experienced and skilled medical team. 

Effective RT dosing (Gy) & extent of targeted areas are important factors to consider in primary RT txs. For high risk T3 cases like my husband’s, we found that there was a range of opinions among PCa medical experts on these issues.  You may wish to research sites like PubMed for peer reviewed medical/scientific studies (such as those by M. Zelefsky) on safe/effective RT dosing for high risk PCa.  Also suggest that you peruse info re extent of whole pelvic RT (such as by Mack Roach). Then, you can form your own opinions and, along with your medical team, determine the best RT protocol for your tx.  I'm sorry that your father and brother both have had a previous PCa dx.  I wonder what their PCa experiences were and what insight you might have gained from them about your own dx and upcoming tx.  

Mounty
Posts: 36
Joined: May 2013

Mrs. PJD,

The MRI has not yet been performed but is scheduled for later today (Monday, May 20) at a NCI CCC. It was scheduled earlier but I postponed it until I was able to confirm that 3-tesla EMRI technology is available at this institution (otherwise I would have gone elsewhere). The ECE determination and T3c staging were based in part on DREs by two urologists, one at this institution and one at another high patient-volume academic center 100 miles down the road. These two urologists compared notes and both agreed that the combination of Gleason 9, high tumor volume, PNI (I did not mention this finding earlier but this was  the read of the second group of pathologists who looked at the cores) and what they found in their DREs puts the odds of ECE at 100%, even in the absence of the MRI data. I don't know whether an ECE determination can be made in the absence of imaging but I guess I'll find out tonight if they were right.

Frankly, I'm suffering from prostate cancer information fatigue and I was planning to let the radiation oncologists and physicists prepare a detailed plan without further research and input from me. Your post convinced me that I can't stop here.  I'll track down the studies by Zelefsky and Roach and get back on PUBMED to track down others as well - if you have any additional suggestions of relevant authors I would be grateful if you could pass them on.

I have three questions I'm hoping you can answer if you can spare a little more time. First, do you think it would be worthwhile to pursue a more thorough assessment of whether metastasis has occurred, by PET for example? I understand how it might help to develop the RT plan if pelvic lymph nodes and/or seminal vesicles are found to have disease that escaped detection by the CT and MRI scans but my understanding is that radiation is planned for these areas regardless. An underlying question is this: what difference would it make at this point if distant metastases are found? I'm already on hormone therapy and so it's not clear how this would impact the treatment plan. Third, would you mind if I emailed you a few questions regarding the specific cancer center where I plan to be treated? Perhaps you don't have access to this sort of information and if so, not a problem, but if you do it would be helpful.

Thanks very much again. The information in this post was enormously helpful and could very well make a big difference in outcome for me.

mrspjd
Posts: 688
Joined: Apr 2010

 

Bill,

 

Unfortunately, I have no hard and fast “answers” to your questions—only opinions based on what I’ve learned with my husband over the last three years.  With everything PCa, there is a wide variance of opinion among medical professionals and non-professionals alike.  As you know, even study data may be interpreted differently by different people. 

 

I understand all too well the PCa info overload fatigue syndrome after initial dx.  Seems like all we did was eat-breathe-sleep (if possible) PCa.  My husband and I continue to learn about PCa.  The education process is never ending but it does get less intense.  I actually like reading PCa medical literature now.  With PJD’s T3 high risk PCa dx, and with three grown sons, we’re not naïve, but we remain hopeful and actively engaged in the face to face PCa community.  I have posted frequently to this forum in the past and some questions may be addressed in previous posts.  Here are some thoughts about the questions you asked above: 

 

In the absence of diagnostic imaging that confirms ECE, PCa medical professionals may determine that ECE is suspected based on high risk PCa features, including those confirmed by an expert 2nd opinion path lab analysis on biopsy cores.  EMRI results, sometimes along with a CDU, may validate that ECE suspicion.  It did in PJD’s situation.  If local LN involvement is suspected due to inconclusive imaging studies, a lymph node biopsy may be preformed.  The findings may or may not change the RT tx protocol.

 

If you’re having an EMRI later today and obtaining results the same day as you indicated, I’m impressed by your medical team.  It took a few days or longer for us to have the imaging results read, interpreted and a report generated.  Keep in mind that it’s possible that the ADT you started may have already begun to shrink tumor cells thus making the EMRI findings inconclusive or negative (that could be a good thing).  I’m a little confused about how/why the RO and dosimetrist are preparing a detailed tx plan without first considering the EMRI results. Perhaps I misunderstood or they didn’t feel the results would impact their tx plan.  PJD’s EMRI results influenced his RT tx decision and protocol.  

 

You’ll be able to access the work of other relevant authors of related PCa studies when you search PubMed separately for Zelefsky and Roach. 

 

The decision to pursue a “more thorough” diagnostic imaging assessment (not really sure what you mean by “more thorough”) will be based on the results of your EMRI and, possibly a CDU.  The F-18 sodium CT/PET (bone) and the C-11 Choline PET (soft organs/tissue) are usually indicated in cases of recurrence in the context of rising PSA when primary, adjuvant and/or salvage txs have failed.  IMO, this may change in the future and the tests may be offered to newly dx’d high risk patients sooner than later.  However, you can ask your PCa oncologist about this and even request the F-18 PET/CT.  Currently, the C-11 Choline PET (non-acetate) is only offered at the Mayo Clinic in MN and it’s somewhat experimental.  (It’s best to be off ADT for that test.) 

 

Re your “…understanding that radiation is planned for these areas regardless.”  Perhaps, but we learned that with PCa you don’t “assume” or take anything for granted.  Ask questions; confirm answers (opinions) by continuing with your own research.  You are your own best medical advocate.  Obtain written copies of everything—doctors meeting notes, imaging tests and results, path reports, etc.

 

Take a deep breath, exhale slowly, and repeat as necessary.  Include your wife.  Things have a way of working out. As trite as that may sound, trust me, they will.

 

Be well.

Mounty
Posts: 36
Joined: May 2013

Thanks Mrs. PJD,

Your discussion of the ECE read was helpful.  The question whether this could be accomplished without an MRI was in response to your earlier post and others that seemed to suggest this was not possible, and I'm happy to hear it is. I mostly wanted to know if these docs were taking non-standard approaches to diagnosis. The fact is, they wanted the MRI performed earlier but things kept getting in the way.

By "more thorough diagnostic imaging assessment" I meant using technology other than CT scans and MRI scans. Your discussion of imaging confirms my understanding that PET and other approaches are often  employed for recurrent disease, although I do understand that some doctors employ them for initial staging as well.

My medical team is good but not so good that they could arrange for a MRI read at 10 P.M. in the evening.  In fact I meant "tonight" figuratively since this is when the scan took place. I'll receive a copy of the report in a few hours and will meet with the urologist soon after.

You're serving a very useful function by encouraging me and other patients and their spouses to not become lazy and complacent in dealing with our  prostate cancer. This was a good lesson for me. It's even more important now. My tumor (I still find it difficult to say this phrase!) appears to have transitioned into a rare androgen-independent tumor, something that rarely happens (as I think you know) this early into ADT. I fully understand the implications if this is confirmed. So now I have a whole new set of questions to research.  I'll continue posting what I learn.

Very best wishes, and thanks again,

Bill

yankeefan
Posts: 69
Joined: Mar 2013

hope it all works out....looks like you've done about all you could do to come to your conclusion....all the best....

p.s. say hi to mounty too....dogs are a great friend for sure.....

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