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Failed DaVinci RP What Next?

winthisthing
Posts: 6
Joined: Dec 2012

I am currently recovering from my DaVinci RP attempt. Had surgery on 12-20-12. 


 I have updated some info here that was asked about and some that was left out. 2012-12-28 

Stats.

Age 57

PSA  2.6      2-11    annual physical

PSA  6.23   2-1-12  annual physical

90 day followup to determine if biopsy warranted

PSA  5.4     5-1-12

Biopsy 1 of 12 cores + < 5%  Gleason 3+3=6 

Diagnosed PCa 6-15-12  

PSA  7.62    8-31-12 free psa .46

Started on Lupron 9-14-12  monthly until surgery

PSA  5.96   10-11-12  

My urologist referred me to an oncologist for a consult who went over all the treatment options and suggested I see a surgical specialist at the university cancer center as the first option. The surgeon left the choice to me and said I would do well with either treament radiation or surgery, that is if the surgery could be completed. He said he could not tell until in there. The surgeon had to abort sugery due to the fact that I had a prior accident (2005) that  caused  crushing fracture of the pelvis R side area. So, due to the internal adhesions and scarring he was unable to get to the prostate. It became adverse risk/reward scenario with possible poor quality of life outcome, doing more harm than good. He was a highly qualified surgeon with a vast experience level.I respect him and thank him for giving me his best shot. 

My question now is what treatment to follow up with. We have a very good local Tomography Unit that does IG/IMRT with 4D CRT specs given below.


TomoTherapy Unit - This treatment system integrates optimized planning, daily CT imaging and helical IMRT treatment to provide precise, continuous radiation therapy from 360 degrees

Conformal Radiotherapy - Using a 24-slice CT simulator, we design a precise treatment plan by creating a three-dimensional model of the patient, tumor and surrounding normal structures. Multiple radiation beams are then positioned and customized exactly to the treatment area. Our CT scanner is currently the only one in Kansas capable of four-dimensional CT scanning. This added dimension in scanning provides important information on tumor movement during the normal respiratory cycle. This information enables our radiation oncologists to tailor margins around the tumor to account for movement


 

or about an hour away is a CK unit. I have been told that CK is no better than the IG/IMRT and may in fact cause more collateral damage due to the higher per treatment rad doses. 

My main concern is of course killing all the cancer but also colon burning/damage. I read someone had a clinical trial for a gel spacer inseerted between prostate and colon. Sounds like the perfect solution in either treatment.

Opinions on the CK versus IG/IMRT ?

PS. I hope I got all the terminology and acronymns - Letters correct 

 

 

hopeful and opt...
Posts: 1290
Joined: Apr 2009

Treatment.......

Eventhough your biopsy indicates that you have a very low volume, low aggressive cancer, the very low free psa of 0.46(low free psa is an indicator of prostate cancer) is of concern. Generally to consider an Active Surveillance protocol with delayed treatment if necessary, one needs to have a psa less than 10, less than two cores with less than 50 percent involvement with a Gleason of 3+3=6. Seventy percent of men with these statistics are likely to have indolent cancer, that is not likely to spread.

What were the results your Digital Rectal Exam.

 I wonder have you had any other diagnostic tests?, ie an MRI with a Tesla 3.0 magnet

Since determining Gleason scores are very subjective it is important to have a  second opinion by a world class  expert pathologist so that you are not under or over treated. 

..................

 

 

winthisthing
Posts: 6
Joined: Dec 2012

I am not sure I follow you on the AS, that is not my plan. None of the professionals have said I was a candidate for that due to my 57 years of age. 

My DRE was normal 

I have had bone scan and ct scans showing no mets. 

Prostate is not enlarged.  

What would the MRI show?

as far as the .46 free psa on the report it said it was within normal range where as the associated psa was abnormal in red letters.

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Win

I am sorry to read about your diagnosis and the aborted surgery. I wonder how far the “cutting” went before giving up. Hopefully you have no side effects.

The way you explain your history makes me wonder if you have gotten second opinions on treatments from due specialists or if you had just embarked on one robotic-surgeon opinion. In my view, your doctor may have given you his “best shot” but not in your benefit.

Were you informed about the possibility of changing from robotic to open type surgery ?

In some cases of Davinci doctors hold the robot in the middle and continue the surgery performed with their “proper hands” not mechanical.

Were you charged for the failed attempt?

Patients at the age of 57 have been recommended for radical treatments, instead of a more “soft” approach of attack such as the Active Surveillance, however, nowadays there is a consensus among the physicians that indolent type of cancer may never bother or become life threatening, so that doctors recommend a sort of a disciplinary wait-and-see approach for cases that fall within pre-established parameters pointed above by Hopeful. AS may be the best way for cases similar to yours providing time with quality of life without jeopardising a proper treatment and cure, when the time requests for it. This is however for guys with the guts to “sleep” with the bandit, without head ages.

In the net you can read details of the latest results from studies done on the AS modality regarding the benefits and the risks, and about the recommendations done by famous doctors treating PCa (urologists, radiologists, oncologists, etc).

Here are some links of interest to you;

http://www.medscape.com/viewarticle/709033

http://www.prostatecancerwatchfulwaiting.co.za/ActiveSurveillance.pdf

http://www.webmd.com/prostate-cancer/watchful-waiting-for-prostate-cancer

http://www.mayoclinic.com/health/active-surveillance-for-prostate-cancer/MY01630

http://www.umm.edu/patiented/articles/what_tests_indicate_extent_of_existing_prostate_cancer_000033_8.htm

Your concern regarding the side effects (colon burning/damage) done by radiotherapies is real and got high possibilities of occurring. All treatments for PCa got risks and cause side effects. Some become permanent and one must learn to live with it the best we can.

Some guys prefer “quick fixes” and choose the lesser time under the beam. CK is the one delivering high doses of radiation per section, therefore in just 5 times. Others care for details in near lymph nodes and prefer a wider approach of radiation choosing IMRT. In this case they need to have more sections (about 40) under the beam but with lower doses of Gys per section.

The delivering equipment is the “tool” to consider. Modern and the latest in operation are the best in terms of precision but the team behind the treatment in charge of the isodose planning is the one that can save you of worse collateral damages.

You can investigate in the net about possible risks googling “side effects from radiation therapies for prostate cancer”.

In any case, even with the best choices, the best results start from a proper diagnosis in terms type and location of the cancer. Contained cases are more assured of a cure then those already metastasized.

To pinpoint the place where cancer hides is crucial and for such one should look for the best image studies in use at present days.

The traditional scintigraphy scans such as bone and typical CT do not perform that well to locate small tumours or colonies that produce low PSA levels of less than 10. These equipments got limitations (low resolutions) in detecting small sizes less than 1 to 2 mm.

In fact, NCCN guide lines do not recommend such testing to cases of low PSA levels.

Newer modalities with better contrast agents like C11 acetate and F18, in cross information data base done with PET and CT or MRI can perform better with more accuracy. Tesla 3.0 suggested by Hopeful may be the less standards one should consider in a negative diagnosis.

I would suggest you to consider discussing with your doctor about the above tests and to get second opinions from specialists in all the RT modalities.

Lupron is "masking" your “real” PSA result. The tests under the hormonal influence cannot serve to compare your progress with regards to a radical treatment.

But HT may be continued as a means of control to keep the cancer at “bay”. Some patients with similar status as that of yours choose just that prefering a regimen similar to AS together with manipulations in the control of the cancer with 5-ARI drugs. They have succesfully maintained control during long periods (years) of time, commiting latter to a treatment. One such drug is Finasteride and another is Avodart. Here is a document from ASCO (American Society of Clinical Oncology);

http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2006/Genitourinary06.PDF

Another link;

http://www.naturalmedicinejournal.com/article_content.asp?article=176

 

 

Wishing you peace of mind for 2013.

VGama  Wink

hopeful and opt...
Posts: 1290
Joined: Apr 2009

I believe that the NCCN guidelines are to discuss the various treatment options with patients. AS is a valid treatment option. In my opinion the "professionals" that you saw were remiss in not providing you this option.

“Active Surveillance with Delayed Treatment if necessary” is not an age dependent treatment decision. At the major medical center where I am monitored in their Active Surveillance program for the past four years, there a patient in the same program who is 35 years old.

Active Surveillance for delayed treatment is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients, who are closely monitored, is similar to initially treated patients with LRPC, so the treatment decisions will be very similar. I've been doing Active Surveillance for the past four years. I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment.

PLease feel free to click my name to see what I have been doing.

 

 

winthisthing
Posts: 6
Joined: Dec 2012

So what is the protocol or criteria to be a candidate for AS?

I think it is my psa doubling from 2011 to 2012 that has my doctors concerned saying I would not make a good candidate that and the fact a gleason 6 it is at the top side or moderate aggressive.

hopeful and opt...
Posts: 1290
Joined: Apr 2009

There is some variance in the protocol at various institutions and doctors treating.  . . This varies, but generally there are biopsies every so often, regular psa’s, DRE’s, PCA3, etc. Here is link by one of the leading experts in AS, if not the best that was recently posted by another interested person at this site.

Dec 2012 Interview with Dr. Klotz http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?id=799211&sk=&date=&pageID=7

You are misinformed about a Gleason 6. By definition it is not considered to be aggressive score, however you need to have a second opinion on your slides to make sure that the reading is accurate.

 

Now the biopsy is the critical information that treatment is based on.

 

 The PSA’s that we get are indicators only, and can vary for various reasons, i.e. having manipulation of the prostate, sex or strenuous exercise before the PSA, even a hard stool.

In many cases there can be an infection that causes the PSA to rise. Generally this is treated with Cipro to see if the PSA decreases.

I recommend that you consult with an expert on Active Surveillance to obtain a professional opinion

......By the way, was your failed surgery, open or robotic?

winthisthing
Posts: 6
Joined: Dec 2012

The surgery was robotic with the option to go open if needed. The assisting surgeon told me it looked like someone dumped a bag of cement in my lower abdomen cavity. 

 

hopeful and opt...
Posts: 1290
Joined: Apr 2009

All treatments can have negative consequences; one can have major negative effects from surgery, not saying that it would have been you, but who knows.

Two directions that are discussed here are AS and SBRT(two machies that deliver SBRT are Cyberknife and Novalis). In my lay opinion either of these are preferable to surgery. I am personally doing AS, since I believe that I might be able to continue for my life time, and if I do need treatment, I will still be able to do my choice of treatment without negative effects as a result of waiting, at the time that treatment is required.  It very well may be SBRT. The technology of SBRT and other modalities improve over time so I hypotetically will have a better active treatment at that time. 

You now be "lucking' to  have a better oportunity.

 

 

 

 

 

 

 

 

Swingshiftworker
Posts: 623
Joined: Mar 2010

CK is more precise than IG/IMRT and is LESS likely to cause collateral tissue damage.

CK is accurate to the sub-mm level and can adjust (on the fly) for body and organ movement during treatment.  IG/IMRT can NOT do this. 

CK is the better choice, if it is available to you.

hopeful and opt...
Posts: 1290
Joined: Apr 2009

Is your Free PSA .46 or is it 46percent?.........Thanks

winthisthing
Posts: 6
Joined: Dec 2012

It was stated as ".46 psa free"

 

I also updated some information in the first post, the fact that I had a psa doubling over the prior 12 months to my first abnormal psa in 6/12.

 

 

 

 

winthisthing
Posts: 6
Joined: Dec 2012

Swingshift

 

Can you steer me to any documents that support CK better more accurate for prostate IG/IMRT

 

Swingshiftworker
Posts: 623
Joined: Mar 2010

I don't think there are any studies that directly compare the effectiveness of CK and IMRT or IGRT.  Just studies that report follow-up results independently for each method.

The information I've seen gives the nod to CK because it has the same "success" rate as sugery and/or IMRT/IGRT with far fewer complications and side effects -- particularly ED, incontinence and collateral tissue damage--  as reported in various studies which reported followup results and through anectodal accounts of patients that you can read here and elsewhere on the Net.

CK is relatively new but it has already proven to be a reliable and effetive form of treatment.  However, if you need HARD data to "prove" that CK is "better" in order make a decision before choosing it, I'm afraid that you won't find it.  You (as I and others who chose CK did) will have to make the choice a bit on "faith."  The determining factor for most of us is the priority we placed on "quality of life" following treatment.  Convenience of treatment is also a considertion since CK only requires 3-4 treatments w/in a week, while IMRT/IGRT can take as many as 28-30 treatments to complete.  From what I've read, CK stands out as the better method in both respects than IMRT or IGRT.

If you review the available data, I think you'll also find at CK presents the better choice in this regard but, if you consider other factors more important, you may end up choosing IMRT/IGRT instead.

Good luck!

 

 

 

 

hopeful and opt...
Posts: 1290
Joined: Apr 2009

mistake

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