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Old 04-30-2012, 05:16 PM   #1
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Smile Scans show NO Mets - 12 1/2 years IADT3 for challenging case

My wife and I just returned from a celebration dinner!

I talked to Dr. Myers today about the special Feraheme MRI/CT scan I had on March 28-29 in Orlando, Florida at Sand Lake Imaging. I've described the process and my layman's interpretation on a recent thread. While the Sand Lake Imaging results looked very good to me, I was concerned that something might have limited the visibility of some nodes, as the scan found fewer than the usual number, but definitely no cancer in any node that appeared.

Today Dr. Myers said that the result was valid -

NO METS!

The radiologist, Dr. Bravo, is careful to note when there are problems in imaging the nodes, and he did not record such problems in my reports. (The technician had told me at the time that the quality of the images was extraordinarily good.) For some unknown reason, some of the usual expected nodes just are not there in my images; they are not concealed, just gone. (I'll be looking into that, but it does not seem to be a problem.) (An earlier highly sensitive and reliable scan for bone mets indicated there were none (Na F18 PET/CT bone scan).

While the Feraheme contrast agent is not taken up by soft tissue except for the nodes, the CT and very powerful 3 Tesla MRI provided important clues about all the organs where mets sometimes go. All looked normal. That too was reassuring.

After 12 1/2 years with a challenging case treated only with intermittent triple androgen deprivation therapy and supportive drugs, plus lifestyle tactics, it's a little hard to get my mind around the likelihood that the cancer is now localized. Dr. Myers suggested several methods to further check out what appears to be localized prostate cancer: color Doppler ultrasound by an expert, multiparametric MRI, and endo-rectal MRI with spectroscopy. I'm going to take time to set my next course, but I'm leaning toward color Doppler ultrasound by an expert in California. I've been folowing that technology (and the expert) for years. Apparently multiparametric MRI is coming on very strong, but I'm not familiar with it. Endo-rectal MRI with spec is another respected method, of course.

This is going to take some getting used to. Whew! It's a long way from the prognosis of three good years followed by two declining years that I got from two respected doctors at major institutions around the turn of the year 2000.

Jim

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Old 04-30-2012, 05:46 PM   #2
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Woohoo! Great news!

The multiparametric MRIs (MRI-spectroscopy is one of several parameters they can combine) are done with endorectal coils that focus the magnetic field. I've followed the progress closely but I've never seen reported resolution better than about 8 mm on mpMRIs. Dr Bahn finds lesions with color doppler ultrasound on the order of a few millimeters, and there is another technique that Dr Myers may not be aware of called elastography (used by Dr Ukimura at USC) and that is getting even better sensitivity. It would be hard to believe that lesions that small are pumping out the kinds of PSA numbers you've had, however.

I'm looking forward to the next installment of your story from the frontlines. It's so nice to hear stories with happy endings.

- Allen

 
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Old 04-30-2012, 08:43 PM   #3
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Jim
Congratulations on your results. Amazing.

I was just contacted today by Sand Lake and will start the process of trying to get my insurance to pay for at least a portion of it. Hopefully I will get over to the mainland mid June.

Once again, all the best

John

 
Old 04-30-2012, 09:08 PM   #4
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Wow!!!! I second that WOOHOOOOOOOOOOOOOOO!!!! I'm so happy for you, Jim! If anybody deserves success, it's you! That is such wonderful, wonderful news!!!

Rhonda

 
Old 05-01-2012, 01:28 AM   #5
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Great news Jim,

And you so deserve this.... yahooooooo..

Ann

 
Old 05-01-2012, 04:12 AM   #6
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

This is a great conclusion on your endeavour. I believe you are very happy and I want to congratulate the occasion raising a glass of a very best Portuguese red wine.
One just must wonder if the cancer doing all that PSA is in fact contained in the gland and that surgery alone or localized radiation may provide you with a cure.
Your stats could not be better when considering the many cases you have helped in this forum with your knowledgeable opinions.



We all share your happiness and wish you a continuous fight for the best.

Baptista

 
Old 05-05-2012, 02:50 PM   #7
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Thanks to all for your warm responses and information. One of the great values of this board is the encouragement it gives to all of us, and I'm glad to be on the receiving end.

I'm now in new and unexpected territory - welcome territory indeed, but I am trying to get my bearings in this new environment. I'm surprised there were no metastases (we expected at least one or a few), and, as Baptista suggested, my oncologists and I are now thinking about what appears to be cancer that is contained in the prostate. (Who would have ever imagined that after the way I started out back in December of 1999! )

It would be nice to think I'm already on the path to a cure if I just continue what I'm doing; however, the PSA level now, as well as the doubling time of three to four months after my PSA during this vacation hit about 5 fourteen months ago, clear away any illusions of imminent cure or unaided dormancy. Obviously, my cancer still has some dangerous potential.

Allen, particular thanks for your comments on staging options. I would like to get a color Dopper ultrasound (CDU), but I'm thinking that would probably not work well while I am taking thalidomide (Thalomid). CDU picks up new blood vessel growth, and such growth is key in outlining the cancer, suggesting size, shape and location. Thalidomide, I believe, would sharply reduce or eliminate such new blood vessel formation, which, would seem to take away the chief advantage of the CDU. I'm going to call a CDU expert's office about that. Any thoughts?

I'm thinking a biopsy, even with extra cores, would be unlikely to add key insight. The Gleason score would not be valid as I have been on hormonal therapy on-and-off for so many years. A "3-D mapping" type of saturation biopsy would provide the details needed, but at this point I'm not eager to go that route.

Is there a difference between mpMRI, that you mention, and endo-rectal MRI with spectroscopy? I suspect there is, and apparently mpMRI technology is catching on rapidly based on superior performance. That 8 mm performance threshold that you mention would not be good enough for reliably finding lymph node mets (even if it could go well beyond the prostate, which is not its role), but I'm thinking it would be fine for detecting typical tumors in the prostate itself. My CT/Feraheme MRI report stated "no prostatic fossa mass lesion is identified." (I'm assuming, which seems very likely to me, that "prostatic fossa" here refers to the area of my intact prostate. I had thought the term "fossa" referred to the area that remained after prostate removal.) To me, that implies there is no large tumor or tumors, such as I clearly had over a decade ago, but it leaves open the possibility of smaller tumors.

I will look into elastography. (It's ironic that Dr. Ukimura is at USC, and that my first in-depth consultation after diagnosis was at the City of Hope in Duarte, CA, during our Christmas vacation, with a well-known surgeon on the USC faculty. Also, one of the oncologists I've been following closely for almost all these years has served on the USC faculty. What's up? Am I going full circle?)

Dr. Myers mentioned the new C11 choline scan as a possibility, but he thought it would only duplicate the results of the Feraheme MRI scan. That makes sense to me, so I'm ruling that out, at least for now.

For a while I will continue with my current course, which is maintaining my vacation from the heavier duty drugs of intermittent triple androgen blockade, the strategy that has been so successful for me for these past 12 1/2 years. The main points in extending the vacation period are low-dose thalidomide (50 mg daily, plus 300 mg of vitamin B6 and a baby aspirin), Celebrex (2 X 200 mg daily), Avodart (.5 mg daily), and lifestyle tactics (nutrition/supplements, strength and aerobic exercise, and stress reduction). I'm mentioning these doses as they are the doses I'm on now, and because there is a basis for them, but I'll emphasize that they were prescribed based on my individual case; these doses could be unsuitable for some of us. I'll post more about that in a new thread. I'm quite surprised, but pleasantly so, at my current success in extending this third off-therapy vacation, now at the 25 month point and counting, with a basically steady PSA of about 9.5 +/- .2, with one exception.

I am trying to resolve two concerns. The first is that the MRI scan found an absence of many lymph nodes that would normally be present. They were not cancerous; they just were not there. Radiation treatment would have accounted for some of that absence, but I have not had radiation. The other concern may be related. Since winter my white blood count has been somewhat below the reference range, though steady. My local oncologist is well aware of that and has said there is no issue at present. As a layman who is not knowledgeable of other cancers, but trying to find out more about lymph nodes, I looked up lymphoma and non-Hodgkins lymphoma, but, fortunately, neither fits my circumstances.

I feel that all this will work out just fine, but I'm not yet comfortable with my new prospects.

Take care,

Jim

Last edited by IADT3since2000; 05-05-2012 at 04:13 PM. Reason: Typo, minor wording ("many" to "typical", "extending the vacation period")

 
Old 05-05-2012, 04:10 PM   #8
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Jim,

There is so much hope for you and all kinds of diagnostic and treatment options have opened up for you. I would be stunned and bewildered in your position, so it is to your credit that you are so intrepidly pursuing your path.

Quote:
I would like to get a color Dopper ultrasound (CDU), but I'm thinking that would probably not work well while I am taking thalidomide (Thalomid). CDU picks up new blood vessel growth, and such growth is key in outlining the cancer, suggesting size, shape and location. Thalidomide, I believe, would sharply reduce or eliminate such new blood vessel formation, which, would seem to take away the chief advantage of the CDU. I'm going to call a CDU expert's office about that. Any thoughts?
My understanding is that tumors tend to have a leaky, not well-formed blood supply and that abnormality is what gets noticed by the CDU. Thalidomide prevents angiogenisis (new blood supply) to the tumor, but does it clear up what is already there? I don't really know. But Dr.Ukimura (who does both CDU and elastography) would be a good person to ask.

Quote:
I'm thinking a biopsy, even with extra cores, would be unlikely to add key insight. The Gleason score would not be valid as I have been on hormonal therapy on-and-off for so many years. A "3-D mapping" type of saturation biopsy would provide the details needed, but at this point I'm not eager to go that route.
Does hormone therapy change the Gleason score? I did not know that. At any rate, you already know you have high grade PC in your prostate, so I agree that there is not much there to be learnt.

Quote:
Is there a difference between mpMRI, that you mention, and endo-rectal MRI with spectroscopy? I suspect there is, and apparently mpMRI technology is catching on rapidly based on superior performance.
I think that most of the parametric MRIs (e.g., Spectroscopy, DWI, DCE) are done with endorectal coils in place (the exceptions may be T1 and T2). When two or more such images are done, it is known as multi-parametric (mp).

Quote:
That 8 mm performance threshold that you mention would not be good enough for reliably finding lymph node mets (even if it could go well beyond the prostate, which is not its role), but I'm thinking it would be fine for detecting many tumors in the prostate itself.
I'm sure you're right, especially with the kind of PSA they've been pumping out. This brings up a question in my mind: What is the value of any fancy imaging at this point? You know it's in the prostate and that radical treatment is indicated. How will any of these imaging options change your decision?

Quote:
My CT/Feraheme MRI report stated "no prostatic fossa mass lesion is identified." (I'm assuming, which seems very likely to me, that "prostatic fossa" here refers to the area of my intact prostate. I had thought the term "fossa" referred to the area that remained after prostate removal.) To me, that implies there is no large tumor or tumors, such as I clearly had over a decade ago, but it leaves open the possibility of smaller tumors.
You are absolutely right. Fossa refers to the prostate bed - the tissue that the prostate sits in -- and not the prostate organ itself. I don't know how good the feraheme is in identifying tumors in the fossa or the gland. There may be microscopic metastases that nothing can image.

I'm not sure what you hope to learn from imaging at this point. Because there is a high probability that small amounts of cancerous cells may have left the prostate and lurk in the fossa, it seems that surgery would be useless. That leaves radiation. I know that Dr. Alan Katz and others are now very successfully treating high risk cancers with CyberKnife, so it's possible that your 12 1/2 year nightmare may be over with a week of treatments.

Let me know if you are coming to LA.

- Allen

 
Old 05-05-2012, 05:12 PM   #9
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Hi Allen and other friends,

Thanks for your thoughtful response.

In particular you asked:

Quote:
... This brings up a question in my mind: What is the value of any fancy imaging at this point? You know it's in the prostate and that radical treatment is indicated. How will any of these imaging options change your decision? ...
Here's what's going through my mind regarding more imaging. Dr. Myers favors well-done radiation for many advanced cases, but, in my particular and extraordinary circumstances, considering the "no mass lesion" comment (probably based on the powerful 3 Tesla MRI and not the feraheme contrast aspect), he mentioned that focal cryotherapy by an expert was a possibility. I'm not yet overly impressed with focal cryo. I've seen a recent paper by Duke Bahn and team; while encouraging for this leading expert, they aren't yet knocking the ball out of the park, as I see it. However, if there were in fact cancer in a limited area of my prostate, focal cryo might work, and imaging might resolve that question.

Beyond that point, I too am thinking that more imaging would not help except to satisfy curiosity, which I'll admit is strong.

Take care,

Jim

 
Old 05-05-2012, 07:31 PM   #10
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Hi Jim,

I can understand why all of this is so confusing for you. With no metastasis found, as you'd expected with the Sandlake imaging, you are now faced with a great mystery. If there's anybody who can dig enough to find the answer, it'll be you. I hope your situation leads to success and a greater sense of knowledge of this disease. Your situation sounds like one which could very well be written up in the medical journals of the future.

I, too, hope to see you in L.A. in September. It would be nice to know who, from this board, will be going. It would be incredible for all of us to have the chance to meet in person.

Remember, too, Jim, we'll be passing by on our way to Virginia very soon.... I hope we can meet up.

Rhonda

 
Old 05-06-2012, 12:15 PM   #11
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Jim,
I share your concerns about focal cryo, especially in your case. As you know, 80% of men with PC have multi-focal disease, which is not amenable to focal treatment. I look at Dr Bahn's approach more as way of extending the time on Active Surveillance for men with very low risk PC, but I've never thought of it as a cure for high risk PC, and I don't think he has either. It potentially eliminates the index lesion -- the source of all metastases, but doesn't eliminate any of the microscopic cancer cells that have already spread. Looking at his reported data as you have, I've also noticed that lesions may crop up eventually in the untreated lobe.

In your case, with your originally hyper-elevated PSA, there is every reason to believe that there are cancer cells in the local area beyond an index lesion, even if they can't be visualized by MRI or CDU. Your diligent IADT may have shrunk them beyond the range of those imaging techniques, but there is still a residual pumping out that PSA. It would be truly miraculous if, as Dr Myers seems to believe, all your cancer has been reduced to a single index lesion that could be eliminated by focal cryo. I hope he's right, but I have misgivings.

- Allen

 
Old 05-07-2012, 09:22 AM   #12
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Hi Allen and Rhonda (and other friends),

Thanks for your recent responses. Yes, I have a mystery to solve.

Allen - Dr. Myers raised the option of focal cryo as a possibility that might fit my circumstances, but he was hardly recommending it as the best approach based on what we know at this time. I'm sure he has the same concerns that you expressed and that I share. On the other hand, based on a number of clues, including his physical exam, there is a basis for the possibility that the environment within my prostate has changed greatly, and that there may be one or more tumors that are localized enough for focal cryo. While I'm keeping that possibility on the table, I'm approaching it with skepticism.

Fortunately I have time to sort through all this, as my current vacation-extending approach is far exceeding my expectations. I'm about to post about that. One option would be another round of intermittent androgen deprivation therapy. I tolerate that well, and it obviously has been highly effective for my case. I am interested in SBRT (Stereotactic Body Radiotherapy) with CyberKnife or some other delivery system, but it would be good to have another few years of published follow-up data. I'm also interested in advanced IMRT.

Take care,

Jim

 
Old 05-07-2012, 01:30 PM   #13
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Hi Jim--
You wrote:
Quote:
I am interested in SBRT (Stereotactic Body Radiotherapy) with CyberKnife or some other delivery system, but it would be good to have another few years of published follow-up data. I'm also interested in advanced IMRT.
I happen to have those data. As you know, the only useful data would be after they discovered that higher doses were necessary for curative radiation therapy, which wasn't that long ago.

The longest running tracking of dose-escalated IMRT was at Memorial Sloan Kettering and gives 10-year results:
170 patients IMRT 81 Gy
http://www.ncbi.nlm.nih.gov/pubmed/21425143
10-year biochemical relapse-free survival:
low risk 81%
intermediate risk 78%
high risk 62%

5-year results at Princess Margaret Hospital are as follows:
259 patients IGRT/IMRT 80 Gy
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2777178
5-year biochemical relapse-free survival
low risk 86%
intermediate risk 73%
high risk 70%

5-year results for CyberKnife at 8 institutions are as follows:
1,101 patients hypofractionated SBRT 35-40 Gy (bio-equiv to 85-115 Gy IMRT)
5-year biochemical relapse-free survival
low risk 95%
intermediate risk 90%
high risk 80%

As one might expect from the improved cancer cell kill rates attributable to hypofractionation (fewer more intense doses), the cure rates are better for CyberKnife in every risk category. In addition, the side-effect profile is better because of the increased accuracy of the SBRT technique.

I know you are most interested in the high risk group, but the sample size gets small, so those results are unfortunately the least projectable.

I hope this is useful to you.

- Allen

 
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Old 05-17-2012, 07:18 PM   #14
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Hi Jim,

I came across a research study that might be of interest to you, because I know you are looking at getting these done for you.
MR spectroscopic imaging (MRSI) and diffusion-weighted imaging (DWI) of prostate cancer with Gleason scores. J Magn Reson Imaging. 2012 May 11
http://www.ncbi.nlm.nih.gov/pubmed/22581787


MRSI provides information about relative concentrations of cellular metabolites in the prostate. In cancerous cells, choline is increased, citrate is decreased, so they used MRSI to look at the ratio of choline to citrate. DWI characterizes the tissue structure at the microscopic level. Combining these two MRIs (actually they found that the MRSI alone was enough), the researchers were not only able to correctly identify cancerous lesions, but also the Gleason score of those lesions.

They were able to correctly distinguish a Gleason 3+3 from a Gleason 3+4 with 94% accuracy, a Gleason 3+3 from a Gleason 4+3 with 100% accuracy, and a Gleason 3+4 from a Gleason 4+3 with 100% accuracy. To my knowledge, this is the first time Gleason scoring has been done without a biopsy.

Moreover, they only used a 1.5T MRI. One of the authors told me they are in the process of repeating this with a 3T MRI and a prospective research design.

Cool, eh?

- Allen

 
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Old 05-18-2012, 01:41 AM   #15
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Re: Scans show NO Mets - 12 1/2 years IADT3 for challenging case

Quote:
Originally Posted by IADT3since2000 View Post
Hi Allen and Rhonda (and other friends),

Thanks for your recent responses. Yes, I have a mystery to solve.

Allen - Dr. Myers raised the option of focal cryo as a possibility that might fit my circumstances, but he was hardly recommending it as the best approach based on what we know at this time. I'm sure he has the same concerns that you expressed and that I share. On the other hand, based on a number of clues, including his physical exam, there is a basis for the possibility that the environment within my prostate has changed greatly, and that there may be one or more tumors that are localized enough for focal cryo. While I'm keeping that possibility on the table, I'm approaching it with skepticism.

Fortunately I have time to sort through all this, as my current vacation-extending approach is far exceeding my expectations. I'm about to post about that. One option would be another round of intermittent androgen deprivation therapy. I tolerate that well, and it obviously has been highly effective for my case. I am interested in SBRT (Stereotactic Body Radiotherapy) with CyberKnife or some other delivery system, but it would be good to have another few years of published follow-up data. I'm also interested in advanced IMRT.

Take care,

Jim
Jim

I am amazed for your thinking with regards to your “next step”. In fact you got at hands a complete “compendium” of information on your case but still are reluctant to make up your mind.

This inability in decision is not just yours but of everyone confronting the disease. In my cancer journey I have experienced the situation three times. It was difficult but looking back even with failed attempts I am confident that I have judged properly and got the best at each time. Rates for survival were always there but in PCa those scales do not include the upmost prize of a “cure”.
I know that we all look for it but be prepared in case the “goal” is not reached. In other words, should be cure the focal of one’s decision?

After my first failure, I realized that the side effects weighed more than cure and that become automatically the aim where to through the darts. Quality of Life become the norm I requested when discussing with my doctors.

I am not enthusiastic in “debulking” treatments. I do not recommend them. But in your case that may be a field to explore. CyberKnife is supposedly recommended to cases where the prospective target falls in one place. IMRT has a broader application. The rates presented by Allen at his post #13 are real but in prostate cancer no two cases can be considered equal which renders those tables worse less if one does not see the other half of the “not-full glass”. What has happened to the 27% of the intermediate risk at IMRT 80Gy or to the 10% of the intermediate risk 30-40 Gy ?

ADT has been friendly to your situation but things might change in future. Your body ages with you and there can be expected refusals by the system in certain “intakes”. Radicals can bring about permanent defects if applied fully. You may need a doctor that can tailor a treatment with quality of life in mind. In 12 years time (doubling period as a survivor) your priorities will be different than those of 12 years ago.
This is a matter you have never discussed with us maybe because it is too private, but that I would recommend you to think about.

Sending you “the force” in these tough times.

Baptista

Last edited by Baptista; 05-18-2012 at 01:44 AM.

 
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