CSN Login
Members Online: 8

Recently diag. with PC

silverfox1
Posts: 36
Joined: Dec 2010

Recently diag. with PC. My PSA was a 4.4 and Gleason scores of 3+3=6 and 3+4=7 with a T2c. Am having to decide between Da vinci operation or Cyberknife radiation treatment. Am seeking a second opinion and have an appt. on Jan. 5th. Not sure which way to go? I was told by my first Urologist that the side affects of radiation are more severe than surgery and do not kick in till later and are life long as where with surgery the side affects tend to diminish....do not know what to believe? Any suggestions?

prostateman
Posts: 18
Joined: Dec 2010

I had surgery and from my choice and experience there is no magic bullet and if anyone tells you different they are blown smoke. You need to decide what treatment is (radiation or surgery) best for you.

You do not mention your age but if I were over 65 I would go with radiation and if I were younger I would be going with surgery (not Da vinci)…Whatever you choose I wish you the best.

mrspjd
Posts: 688
Joined: Apr 2010

Welcome to the forum. Unfortunately there are no easy treatment decision answers. You must allow time to do your own very thorough research and homework in order to decide what YOU believe will be the best treatment decision for your individual and unique PCa statistics. You are your own best advocate when it comes to questions to your medical team and decisions about your treatment. One way to start the research is to read some of the many excellent discussions on this forum about tx options. I suggest reading a minimum of 4 back pages of threads and posts. Many guys who have had surgery (RP), either open or robotic, seem to think this is the best option; many men who have had any one of the many forms of radiation (RT), might tell you that is the best option. Then there are also treatment combinations to consider, such as RP & RT, RT & hormones, etc. No one tx is right for every man, and what may have worked for one, may not work or be right for another. All txs come with risks and potential side effects. Many of those risks and side effects are very thoroughly discussed if you read the back pages.

Age criteria alone is not sufficient to determine your tx option. Your overall health, your PCa staging (classified as low, intermediate or high risk), your personal PCa statistics, history, whether there is PNI (perineural invasion) or ECE (extracapsular/prostatic extension) identified on the biopsy, etc. all need to be considered and weigh into your decision process. Not an easy task by any means. If you haven't already had your biopsy lab slides sent out for a 2nd opinion, I strongly encourage you to do so. Nationally there are several well known, highly respected pathology labs, such as Johns-Hopkins, that specialize in providing 2nd opinion PCa biopsy reports. This 2nd opinion biopsy lab report will be a critical piece of info to consider in your staging process and will help move you in the right direction for a tx decision that you believe will make you a survivor.
Good luck and wishing you all the best,
mrs pjd

The Nev
Posts: 50
Joined: Sep 2009

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.

SRVR
Posts: 11
Joined: Dec 2010

There are so many options for early stage treatment and most of them are equally effective. The question we all have to answer is how much pain and risk are you willing to endure.

I received proton beam therapy this year and I will be a lifelong advocate.

It was painless. I have had no side effects that didn't exist already (urinary urgency from an already enlarged prostate gland). And I have no reason to expect problems that sometimes occur with conventional radiation treatment. Proton radiation is far less harmful at the skin surface and has no measurable exit dose. It essentially detonates at the prostate bed. It doesn't blast through you, damaging everything in it's path like conventional radiation.

Join the Brotherhood of the Balloon at protonbob.com and you'll have the names, addresses, phone numbers, and email addresses of over 5,000 former proton patients who are happy to share their experiences with proton therapy. They've made that information public on that forum because they want to talk about it. I don't know of any support group for another type of treatment that is this open and willing to talk about it. I'm on that list and I've met at least 60 of those guys face to face. Nobody seems to have anything to hide or an agenda for profit (like a surgeon or radiologist might). The personal testimony of some of those guys helped me make up my mind, and I have no regrets.

And no side effects.

In fact, the last time I felt any kind of pain from this whole cancer ordeal was on the biopsy table. But if you're on this forum, you're already past that stage.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Silverfox,

Please allow me to add a welcome to this forum. Although I have had Cyberknife and believe it was the best for me I strongly encourage you to seek second and third opinions from both surgeons and radiologists. At the end of the day, only you can make the best decision for your own individual situation.

As others have suggested here, there are several posts in the last two or three pages of this forum that disucss pros and cons of both robotic surgery and Cyberknife as well as other options such as HIFU and proton therapy. I suggest you arrange consults with specialists from all of these procedures.

Best of luck to you on your journey.

SV
Posts: 56
Joined: Sep 2010

This could be the most important decision of your life so choose your solution and doctor wisely. I had DaVinci surgery with Dr Kawachi at City of Hope with a Gleason of 9 reduced to seven at post op biopsy and all margins clear, organ confined. Fully continent immediately and sex with 3/4 erection shortly after surgery. No worries about long term radiation effects down the road. But I have read and spoke to men who did not choose the right surgeon and have miserable lives now--same for radiation.

I obviously swear by Da Vinci surgery but you MUST find out your surgeon's track record with at least a thousand surgeries under his belt. Also, get into the best physical shape you can before surgery and you will bounce back quicker no matter your age. Ten days past surgery I started riding my motorcycle to the gym and now screw whenever I want with a little help from vitamin V. Proper diet and nutrition is critical before and after. READ READ READ like your life depends on it because it does.
Suerte amigo.

silverfox1
Posts: 36
Joined: Dec 2010

Kongo,
Really want to thank you for taking the time to help! IF you do not mind, what led you to the treatment? Was your PSA low? Was your Gleason scores low? After reading so many expereinces, you can find both good and bad for both treatments. The one thing that my urologist tried to scare me about the radiation, is that the affects are delayed and once the kick in, the are for life! Although the same could be said about a bad surgery. My decision will weigh heavy on my goal of wanting to live as long as I can....which ever treatment gets me to that goal is the treatment I will probably go with!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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.

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Hi Silverfox and Kongo,
This is a great, very detailed and informative post not only in regards to the cyberknife but to all types of treatments. Kongo explains precisely the attitude that any individual should follow when confronting the dilemma of making a decision on a new/next treatment for his case, independently of what he chooses.
I hope that all members of our wagon read this post and pass it on.
Thanks Kongo.
Silver this is a great present in this Christmas season.

Merry Christmas to all
VGama

silverfox1
Posts: 36
Joined: Dec 2010

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!

Swingshiftworker
Posts: 616
Joined: Mar 2010

Check out this link to Dr. Alan Katz's article "CyberKnife Radiosurgery for Prostate Cancer" published in the October 2010 issue of Technology in Cancer Research and Treatment, which IMHO is the best discussion best summary of the research that has been done on CK as a treatment for PCa to date:

http://www.tcrt.org/c4309/CyberKnife-Radiosurgery-for-Prostate-Cancer-463-472-p17811.html

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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
Posts: 27
Joined: Oct 2010

I have an appointment in January. thanks for the info.

chitown
Posts: 90
Joined: Mar 2010

I share the same experience of SV on DaVinci, but we all are difference. Our differences cant be changed by the variable totally under our control is choosing the right physician/surgeon. Read, research and talk to people who have went the same path with same people that you are thinking of..goo luck

stepjnsj's picture
stepjnsj
Posts: 18
Joined: Oct 2010

I know what you are going through and I wish you the best, first of all I took all the time that I needed before making a decision upon using Da Vinci and I would do the same again if I were faced with the same circumstances. I had the surgery this year back in Sept and I am doing fine with still a little incontinent problem and the erections have not been good as of so far. I have experimented with the pump with moderate results and I don't want to use the Viagra or Cialis as of yet to get back to acceptable level. But just look into the John Hopkins Internal Medicine for Prostate Cancer and they have some great information relating to Prostate Cancer you can check out this link for more info.

http://urology.jhu.edu/ and click on prostate cancer

Robert1941
Posts: 27
Joined: Oct 2010

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.

Swingshiftworker
Posts: 616
Joined: Mar 2010

Sounds like you're doing the right thing.

Do your research and choose the method that "feels" right to you.

There's no single solution but I re-read your original post and when you said that your urologist said that: "the side affects of radiation are more severe than surgery and do not kick in till later and are life long as where with surgery the side affects tend to diminish" all I could think of saying was BULLSH*T!!!!!

From what I and you have read and heard, the side effects of surgery can be catastrophic, immediate and irreparable. Although the side effects of radiation -- via BT, IMRT or EBRT -- can be serious they seldom approach the worst that surgery has to offer and, if you go w/CK or PBT, you'll hardly notice any side effects at all. As for the long term effects, the main risk is collateral cancers but the incidence of this is very low and the prospect for treatment of such cancers is also very good AND if you have followup radiation to surgery, you have the same long term risk of collateral cancer if you just had radiation treatment to begin with.

In any event, I commend you for reacting defensively and proactively to your urologist's hard sell for surgery. Take your time and do as much research as you think is practical before making the choice of treatments that you consider is "right" for you, because once you make the choice it is essentially irrevocable.

Good luck!!!

silverfox1
Posts: 36
Joined: Dec 2010

Thanks for the response and support! I have an appointment with a Radiation Oncol that does the CK and then a new Urologist for a third opinion. Will make my decision after meeting with both of them. I just want to let everyone know how much I appreciate their support and for sharing their experiences.

Thanks to All!

rstopps's picture
rstopps
Posts: 10
Joined: Dec 2010

Welcome to the Reluctant Brotherhood. I know the decision you are faced with. I was recently diagnosed with PSA 12 and Gleason score of 3+3=6. My Urologist recomended that I read "The Guide to Surviving Prostate Cancer" by Dr. Pratrick Whalsh. This is an easy to read comprehensive book written by the an expert in Prostrate Cancer at John Hopkins. This book will provide you the pros and cons of the treatment options available to you. It will help you make an informed descision.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network