Recently diag. with PC

The Nev said:

If I had a do over
My stats are very close to yours PSA 4.5 Gleason 3&4-7 final T2c and I had DaVinci surgery. The good my margins were clear, my post surgery PSA is undetectable. The bad still have issues with incontinence not real bad but looks like I'll wear a pad the rest of my life and I'm only 56. The bad no erections at all, I can take a shot of trimix and it works, so we can have sex but its no where near normal for me.

So if I had a mulligan would I do surgery again? I just really don't know, I would do a lot more research on protron and other forms of radiation. Then who knows maybe I would do surgery anyway. Not much help was I

good luck with your decisssion its a tough one.

Kongo said:

Decisions
Silverfox,

I was diagnosed in March 2010 with a PSA of 4.3 that had increased from 3.8 in 18 months. DRE was normal. GP referred me to a urologist who recommended a biopsy. (Sound familiar?) Knowing next to nothing about prostate cancer or biopsies or even what PSA was representing, I went ahead with the biopsy. Results were 1 of 12 cores positive with 15% involvement. Gleason score was 3+3=6. A bone scan taken at this time was negative as well as a full panel blood workup. Staged at T1c.

My initial urologist recommended open surgery, his specialty. My GP agreed with the urologist he referred me to (no surprises there). I also met with an Oncologist who recommended surgery without preference to either open or robotic. By this time I had read several books about prostate cancer and was unwilling to risk the side effects associated with surgery so I began looking at other options. I consulted with Loma Linda for proton therapy and an IMRT/IGRT specialist. I also did a telephone consultation with the author of one of the books I'd read that suggested AS as a viable option for my pathology. During my research I also stumbled across CyberKnife and SBRT radiation and scheduled a consult with them while continuing to do a lot of research. Before making a final decision I had read more than a dozen books and dozens of studies trying to figure out what was best for me. In the end I built a matrix that listed the various procedures across the top and various aspects such as insurance coverage, convenience, potential side effects, recurrence rates, and so forth on the y-axis. I then color-coded the boxes based on my research and importance to me. In the end, I came up with CyberKnife as the best choice for me and my priorities.

I felt all of the doctors I consulted with were excellent and informative and all were board certified with training at prestigious institutions across the country. I felt fortunate that my insurance coverage and financial resources were such that I was not restricted in choosing any treatment based on cost or coverage. I also felt that given my relatively low risk cancer diagnosis that just about treatment had a fairly high probability of successfully treating the cancer.

For me then, it became a question of choosing a treatment that posed the lowest risk of potential side effects. I had decided that quality of life was more important that longevity but obviously I wanted to live as long as possible. In your post you indicated that your goal was to live as long as possible...a different twist than my priorities but I understand where you are coming from. These are personal decisions that I don't think have a right or wrong answer.

None of the doctors I met with raised radiation side effects as a major issue although I did raise it as a matter of concern. In general I was told that radiation has been used to successfully treat cancer for more than 100 years and that modern radiation delivery methods are designed to precisely deliver dosages to cancerous areas and minimize damage to surrounding tissue or organs. In CK for example, my doctors reviewed with me a 3-D image of my unique prostate and showed me the radiation plan that would radiate the prostate but minimize (with a rapid drop off in dosage) to surrounding tissue and organs. I was worried about potential radiation to the bladder, colon, scrotum, and penis. It turned out that in my radiation plan that really wasn't an issue as these areas were avoided. I understand many men are fearful of radiation and the potential for side effects years later. After I reviewed the information available and queried the doctors, I was able to satisfy myself that this was a risk I was willing to take and was less of an issue for me than the side effects of other treatments.

Any treatment is going to have risks and possible side effects. From what I learned about CK, the potential side effects were ones that I felt I could live with given my individual situation. Others may have different priorities and a varying degree of comfort with potential side effects. CK is optimized for relatively small tumors in men with prostate cancer that is considered low risk. From what I understand, I do not believe it is appropriate for intermediate or aggressive prostate cancer although I know there have been some studies in that area and some doctors utilize a CK "boost" in conjunction with IMRT or brachytherapy, for example.

If you are interested in this procedure, I would raise your concerns about radiation with a radiologist who specializes in CK. If he can't alleviate your worries with facts and data, then you ought to consider something else. Radiation and its effect is a very complicated subject and many lay men do not understand the nuances of fractional radiation, alpha/beta ratios, biological equivilant dosages, impact to cellular DNA, and so forth. In my opinion, it can't be dismissed with, "radiation is bad, don't do radiation" or accepted as easily as saying, "they have a plan they follow so it's not a problem." I personally believe each patient should understand these details to the fullest extent that they are able. (I even made them show me the routine maintenence and calibration procedures for CK and explain the emergency procedures such as a power outages or earthquakes). If you're concerned about radiation, you have to do your homework and meet with a specialist in the area of treatment you are considering, particularly since different radiation techniques have varying degrees of risk to surrounding tissue and organs.

Sorry for the long reply but choosing a treatment best for your individual cancer and priorities is a complicated subject.

Best of luck to you as you sort through all the data.

silverfox1 said:

Kongo, any research on the long term side affects CK available?
Kongo,

You have provided such great information on CK. I was wondering if you came across any information on the time frame of any potential side affects (if any) from the CK treatment. I was told by my first Urologist that the side affects would come at a later time and would be life long. Since then I have scheduled appt. with radio Onco. and a second urologist to get more information. I really felt that the initial consult the Uro was actually trying to scare me into doing surgery vs CK. Want to thank you again for your support and the great information on CK. Hope all is well and that you are enjoying the Holidays!

Kongo said:

Side Effects
Silverfox,

Swingshiftworker provided a link to what, in my opinion, is the most comprehensive technical paper on the results of several CyberKnife studies that I have read since I began my PCa journey. There are several others if you wish to do searches in the databases available online at PubMed or Urotoday.

Another resource can be found at www.cyberknife.com which is the website of Accuray, Inc., the manufacturer of CyberKnife. There is an online patient forum there moderated by several practicing CyberKinfe doctors that I have found to be excellent in addressing patient concerns and questions from men exploring CK as a potential treatment.

If you have an engineering background or technical interest, another link that you may find useful is a technical description of the CK system today and how it develops its beam patterns and develops the degree of accuracy necessary. In my opinion, one reason the CK treatment is generally so free of side effects is due to its ability to deliver the planned radiation dose so accurately. This link is :
http://www.tcrt.org//mc_images/category/4309/02-kilby_tcrt_9_5.pdf

In this and previous posts you have expressed interest in the long term side effects. Frankly, after studies approach five years or more there very few men who have had any long term ill effects and almost all of the patients that do have issues had pre-existing conditions. I believe the last count Accuray published about the number of men who have had CK for PCa is well over 5,000 and rapidly increasing rapidly. I have read of two or three instances of biochemical recurrence after CK treatment for men who were treated and later it was determined that the cancer had already moved beyond the prostate at the time of treatment. Men with urinary issues before treatment (hesitancy, weak stream, etc.) sometimes have these symptoms after treatment. I read of once case where a man with urinary retention issues had to be treated post CK with a TURP which resolved the issue. Some men experience a sense of urgency immediately following treatment caused by the inflammation of the tissue surrounding the urethra but these cases are almost mild and can be treated by ibuprofen (which alleviates the swelling) or Flomax. (Be aware that Flomax has its own set of side effects) These urgency issues are typically resolved within a few weeks of treatment. Incontinence is not a CK side effect. There are rare cases of rectal irritation that show up as blood in the stools. If this condition persists it may be necessary to conduct some minor cauterization inside the colon (similar to what they do if a polyp is removed during a colonoscopy). 85% of men who are potent sexually before treatment remain that way after treatment although some report a decrease in the volume of ejaculate over time. My doctors explained to me that men who are without urinary or rectal irritations are generally free of them after treatment. Men who are sexually potent before treatment are sexually potent after treatment. After reading a study out of Stanford, I insisted that my treatment dosage be delivered every other day rather than on consecutive days to allow surrounding tissue some time to recover between dosages. I believe that this spared me the minor urgency issues Swingshiftworker and other who have posted here experienced.

Regarding the long term radiation effects, there isn’t any data. Some men who had older forms of EBRT that were common in the 70s and 80s are more likely to see secondary cancers as a result of radiation treatment but these numbers remain relatively low and it is impossible to compare those earlier forms of radiation where relatively high dosages were applied to the entire pelvic region to the precisely delivered forms of radiation that CK, IMRT, tomography, and others deliver today. The key to understanding the potential radiation effects has to do with the alpha/beta ratio and how CK handles that and its impact on surrounding tissue. The Katz paper Swingshiftworker referenced goes into great detail about the importance of this ratio and why CK is a particularly effective treatment for early stage PCa,

I think you are smart to carefully consider side effects and to compare likelihood of occurrence amongst the various forms of treatment. When considering radiation, I think it is critical that you discuss your treatment option with a radiologist who is trained in the procedure you are considering. SBRT is different than IMRT which is different from proton therapy and so forth. If you are considering CK, consult with a CK doctor, not a IMRT specialist who may have heard of CK. Similarly, if you’re considering IMRT, don’t talk to a CK specialist. If you’re considering open surgery, talk to a surgeon who practices open surgery or if you’re thinking of robotic, talk to a DaVinci specialist. Most of these specialists will give you differing opinions about other treatments. It’s sort of like if you are considering buying a BMW, don’t go to the Mercedes dealer to get your questions answered. Go to the source.

Good luck to you as you wade through all of the data in the course of making your decision. I am six months out from my treatment and have not had any side effects but this treatment is not a panacea and is clearly not for everyone. Understanding your own pathology and what treatments are optimized for your individual condition is important in selecting what is best for you as well as clearly establishing your priorities about quality of life and comfort level with potential side effects.

Robert1941 said:

Thanks for the input
I was diagnosed in Sep with 3+3 and PSA of 4.5 and was signed up for davince in Nov but got cold feet and felt doctor was rushing me and made a bunch of claimes about how great it was ans so forth. some men in my church had it and still wearing diapers after two years who said to slow down. I also have diabetes and have read that havcing your prostate removed increases risk of bad side effects if you have type 2.

Now I am investigating everything much closer and looking at other alternatives. Not saying I won't do surgery but got very bad vibes from the rush and sell job my uro was giving me.

when I read some of the posts here and other places it seems that most all of them are about dealing with ED or peeing problems after surgery. It may not happen to everyone but if it happens to you it is forever it seems. I am too young (61) for all that I think. Hard decisons but am doing waiting for now while I look.