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Less than a week after diagnosis - which treatment is best???

dafuston
Posts: 26
Joined: Aug 2011

My husband, age 50, was diagnosed with PC on Friday the 5th. It was caught very early, is contained in the prostate, with cancer cells found in only one (1 of 12)area biopsied, with questionable cells in the area just above that. The Gleason Score is a 3 +3 = 6. We are in the Atlanta, GA area and are currently seeing a urologist out of Emory. We were given 3 treatment options being cryosurgery, radiation seeds, or radical prostatectomy. I have been reading about the robotic surgery, and I am not sure if that is the same as option 3 or something entirely different. I would love to hear from anyone who has gone with any of these options...how you chose your treatment, side effects, etc.

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Dafuston

I am not surprised to read your comment on the choices on treatment given to your husband by his urologist. The three proposed treatments are all surgery related, even if seeds are radioactive. However, other choices exist and I would recommend you to research deeply before any commitment. Nothing is indicative of a need to rush.

A missing but important piece of data on your husband’s diagnosis is a chronology of his PSA. The volume of cancer found in the one core positive can also help in getting a better opinion.
Gleason grade of 3 and score of 6 is of a low aggressivity type and that of low risk case. One core positive out of twelve is also indicative of cancer in its initial status. The term “contained” from the pathologist report is again for a low probability of recurrence.

At first glance, any treatment would do well in your husband’s case (surgery or radiotherapy). In fact he might be recommended for active surveillance (AS) which it would mean no treatment at all but a controlled type of management, leading to a treatment in the future in case his status would worsen. No treatment is equal to no risky side effects.
NCCN recommends AS for similar cases of your husband. You can read details on this site;
http://www.medscape.com/viewarticle/715129

Here is the NCCN Clinical Practice Guidelines in Oncology;
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Your husband will do well and guys in this forum can help you understanding the steps to follow. The important is to get educated and be focus on the problem.
You can research in the net by typing “treatments for prostate cancer”, and you can read past threads in this forum by typing the name of each treatment. You can also get some books to read details about the diagnosis, treatments and their side effects.

Here is an excellent book written by a famous urologist specialist on PCa;
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition is better; June 2007); which may help you understanding options between surgery and radiation.
Here is a video on Dr. Walsh interview (the author of the above book);
http://www.charlierose.com/view/interview/9016

I was 50 years old when I was diagnosed with prostate cancer back in 2000. I had a low Gleason score of 2+3=5 (now regarded as 6 since recommendations by NCCN in 2005) and decided on open radical prostatectomy (surgery). My PSA was very high at 22.4.
This is eleven years living as a “survivor”. One should consider that we may be similar but not equal; and that one same treatment does not fit all.

Wishing peace of mind to both of you.

Welcome to the board.
VGama

dafuston
Posts: 26
Joined: Aug 2011

I so appreciate the books, websites and videos you recommended. I don't know the exact history of his PSA, but the most recent was 3.0.

hopeful and opt...
Posts: 1357
Joined: Apr 2009

As was mentioned by Kongo, Vgama and others, you and your husband, and I hope that he posts, need to be educated, and need to know what is happening with the cancer so you can make a best decison. Based on what you posted so far you are in no rush at all.

You need to be specific and complete with the information that you post.

As was mentioned by other posters you need to have a copy of all medical information that is available.

Specifically you need to know the current and past psa's so that you can see what the trend is.

you need to know the amount involvement of the core that is 3+3+6; that is, what is the percent of the core that is cancerous. If it is less than 50% he is a candidate for Active Surveillance for delayed treatment if necessary. It very possible (70%)that your husbands cancer is indolent, not likely to spread, and he may be able to pursue this treatment for the rest of his life, as I am. Please click my name to find out my logic for doing, and what I've been doing during the last two and a half years while pursuing an active surveillance protocol.

How is your husbands current medical health.

You need to have an independent second opinion of the biopsy slides by an expert so that you are not under or over treated........THIS IS VERY IMPORTANT.

As you probably realize you are getting excellent information from us posters, who lives have been changed by diagnosis, who study and are informed, and are trying to give something back by sharing with you.

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

Sorry to hear that your husband has been diagnosed with PCa. You've come to the right place for information. As any urologist will tell you, the real experts on PCa are the guys who've gone through it.

Your question has no easy answer. As you've already found out, there is a wealth of treatment options available. The reason for that is that most of them work - especially in early stage cancer. The hard part is finding what is the best choice for this particular case. You and your husband will be the ones to determine that. You've taken the best possible first step. You'll hear feedback from many great people here with info about many treatment choices. Listen to them all and do all the research you can. Gleason 6 gives you some time to make a decision, but it's not license to keep putting off action indefinitely.

In my case, I was stage 2 with a gleason of 4+3=7. I opted for the robotic surgery. There are 2 ways to do the surgery - open the abdomen (done by hand) and robotic (done with about 5 or 6 keyhole incisions). My urologist had performed 1800 robotic surgeries when he did mine and I have no regrets. The robotic gets you out of the hospital sooner, you heal faster and lose less blood than open surgery. Key to success with robotic surgery is to find someone who has done at least 1000 of 'em.

Others will weigh in on the pluses of the treatment options they chose. The best choice is always what works best for you.

dafuston
Posts: 26
Joined: Aug 2011

Thank you for your comments and support...this is really daunting! Congratulations on your success, and i wish you continued health!

Kentr
Posts: 111
Joined: May 2009

You have asked for input on "any" treatment options so here's mine:

Date PSA
06/13/05 2.5
10/20/06 3.8
08/10/07 4.8
11/09/07 3.5
01/04/08 3.4 Brachytherapy January 10, 2008 (age 66)
04/10/08 1.1
07/09/08 0.4
10/07/08 0.2
01/08/09 0.4
07/02/09 0.5
08/31/09 0.7
12/07/09 0.8
07/14/10 1.0
11/17/10 1.3
03/17/11 0.3
07/28/11 0.2

Keep reading up on all the options - do NOT accept my results as the last word or read into them any recommendation on my part. There are some outstanding individuals posting here. Speaking for the "team," we wish the two of you the very best.

Trew
Posts: 892
Joined: Jan 2010

Wow- just a gleason of 6. That is very encouraging. Please, take a serious look at proton therapy before deciding for surgery. This can mean so muchi n saving your husband's quality of life.

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

Sorry to hear of your husband's diagnosis. The good news in this story is that, as you point out, it seems to have been detected early and he appears (from the brief details you shared) that he has a low risk diagnosis. And to answer the question posed in your post -- there is no single best treatment. Every single diagnosis is different. Every man is different. We all have individual priorities about quality of life, the importance of different things, and how risk adverse we are. One thing you will learn as you go forward is that there are never any easy answers in dealing with this disease.

A couple of your thoughts took me back a bit...what did you mean that "they" gave you three choices that included cryosurgery, brachytherapy (seeds), or RP. Was this the diagnosing urologist or was it your insurance company that limited you to only these three choices? If it was your urologist, I strongly suggest that you seek second opinions immediately. In the United States diagnosing urologists are required to inform patients of the full range of government approved treatment protocols and there are a lot more than three of them. Also, I have never heard of cryosurgery being recommended for a man as young as your husband with such a low risk diagnosis.

I realize you are very early on in the post diagnosis process and still going through a wide range of emotions that include fear, denial, anger, confusion, and on and on. The best way, in my opinion, to get past this stage is to educate yourself and become an empowered patient. You have many, many choices of treatment at this stage but until you learn this information on your own you are at risk of being led toward a treatment that may not be best for you and your husband, despite how nice the doctor may be.

A great place to start your education is right here in this forum. Please take the time to read back through several pages of postings to see what men faced with the same decisions as your husband have done to combat this disease. You should also seek second opinions (and third or fourth or more opinions) so that you get a full appreciation of all the options open to your husband and the advantages and disadvantages of each. You may be surprised to learn that there is very broad and strong disagreement among the professional community about how to treat the different stages of prostate cancer. They all can't be right and they all can't be wrong but somewhere in the mix is what is right for you.

Besides the three treatments your doctor gave you, you also have the option to do Active Surveillance which at this stage of your husband's cancer may be a prudent move. Besides brachytherapy, there are a variety of modern external radiation techniques that include IMRT, SBRT, IGRT, proton treatment, and HDR Brachy. You have the choice of "open" radical prostatectomy or robotic (DaVinci). There are various types of hormone treatments, orchiectomy, and all of these are just what is approved within the USA. If you're willing to pay out of pocket and go offshore there are other options and some men swear by them. At least one poster in this forum favors the strawberry milkshake diet and asparagus. i'm sure I have overlooked some options but I think you get the idea. You have a lot of choices.

As you start your journey, I suggest that you get complete records of your husband's last several physicals so you can track the PSA trend, a copy of the biopsy report, referring notes between your primary care physician and the urologist, and anything else that might come into play...like a detailed list of all medications and so forth that you will need when you consult with other doctors. You should start a notebook where you keep all this information as well as notes from doctor visits and lists of questions you will want to ask different specialists. You should also get a second opinion on your husband's biopsy slides and your doctor's office can explain to you how to do this. When your husband visits different specialists it is good if you go along as well since he will forget some things that you may remember. Ask the doctor if you can record the conversation so you can refer to it later.

You also need to consult with your insurance company to learn what they will and will not cover. Large HMOs like Kaiser tend to offer fewer options than some others.

If your husband is veteran there may be a host of additional coverage options.

You should do a little internet research and learn how to calculate your husband's PSA doubling time, his PSA velocity, and the PSA density. You have all the information you need to do this in his medical records.

Shortly after my diagnosis I went to Amazon and downloaded just about every book they had on prostate cancer and did a crash course. 18 months ago I couldn't spell PSA and barely knew where my prostate was. I am a lot more educated now.

It would be helpful if you could post whether or not there is a history of PCa or breast cancer in you husband's family, what his PSA history is, and the results of the DRE.

It is great that you are involved. This is truly a couple's disease and it will profoundly affect both of you and he will need your emotional support. Prostate cancer affects the center of his sexuality and he may have many fears he is unwilling to articulate at this early stage. Prostate cancer and its treatments can have profound and permanent effects on continence, virility, erectile function, and emotion.

You should encourage your husband to also join this forum. You can always relay information to him but he needs to take ownership of this disease.

Best of luck to both of you.

K

p.s. I was diagnosed in March of last year with a similar pathology: PSA = 4.3, Gleason 3+3, 1 of 12 cells showed PCa, contained in the prostate, no family history, and a normal DRE. After much research I chose to have a SBRT radiation treatment (fully covered by my insurance) known as Cyberknife. Upshot is that 14 months after treatment my PSA is below 1, there is no evidence of cancer, and I have had no side effects whatsoever.

dafuston
Posts: 26
Joined: Aug 2011

Thank you so much for your post. A 2nd opinion is definitely in our near future. When I said "they" I meant the urologist. I have gone back through some of my husband's records, and he has never had an abnormal DRE. His PSA was at 1.8 in 10-07, 3.0 in 12-09, 2.5 in 7-10, and 3.0 in 4-11. It was through back surgery and another issue entirely that he went to see the urologist. When he showed the urologist his PSA history, the doctor wanted to redo the PSA test and then a biopsy shortly after getting the PSA results. My husband is in very good health (especially since the back surgery was such a success). His job requires extensive US travel, but he has been doing research separately and is not avoiding or denying the diagnosis. We "put our heads together" in the evenings to see what each of us has learned. Our daughter is also very involved in the process as she majored in biology in college. I appreciate your suggestions on the various other treatment options and will educate myself on them today, right after I make an appointment for a 2nd opinion! :)

dafuston
Posts: 26
Joined: Aug 2011

You said that you had never heard of cryosurgery offered to someone as young and in such an early stage as my husband. Why is it for older patients?

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Kongo
Posts: 1167
Joined: Mar 2010

I am not an expert on cryosurgery but essentially it is a process where super cooled probes are inserted into the prostate and they freeze and thaw the cells which kills the prostate cancer. It also kills the other cells as well. Cryosurgery is not a common procedure and runs a much higher risk of incontinence and complete erectile dysfunction than other treatments. There are some new advances that have occurred and you should check it out with someone who specializes in this treatment. Just make sure you fully understand the potential side effects.

My thoughts was that given your husband's relatively low risk diagnosis, I could not grasp why your doctor would recommend a procedure that carries such a risk of adverse side effects on a man as young as your husband.

Your doctor's recommendations seemed to come right out of a 1990 play book. Is he an older physician by chance? When and where did he get his degree?

You may be interested to know that prostate cancer is BIG business. For men over 50, nearly 25% who have biopsies will show some evidence of prostate cancer. The PSA history you described doesn't seem unusually high and I wonder why a biopsy was done. Doctors make a lot of money on biopsies and then of course, they can count on 25% of them needing follow on treatment which is another business development opportunity. More and more younger men are being diagnosed with prostate cancer but I suspect that is because we're testing more of them not that there is an epidemic of prostate cancer sweeping America. Although the studies I have read indicate a strong correlation between the typical American diet and prostate cancer. Men who have high dairy intake and eat a lot of red meat are more prone to prostate cancer. (Breast cancer too, incidentally). In Western nations about 1 in 6 men will be diagnosed with prostate cancer. In Asian nations with a much lower intake of meat and virtually no dairy, the incidence of prostate cancer is about 1 in 100,000. Asians who immigrate and adopt Western diets have the same rates of PCa as the rest of us. You can see the obvious link here and if you're interested, I would recommend you get a copy of The China Study for more detailed information.

Good luck in your research.

dafuston
Posts: 26
Joined: Aug 2011

Kongo, no, the urologist is actually young...got his degree from Univ. of FL and then on to Baylor University. You have definitely given us a lot of food for thought!

hopeful and opt...
Posts: 1357
Joined: Apr 2009

to emphasize, many doctors are self serving directing you to treatment that will benefit them, not the patient which emphasizes the need for education. Also to add, there is a world known doc in Florida who specializes in Cryo....it may be thatg your doc has been influence by him.

Kongo is right about cryo. there is a 100 percent chance of impotence...this treatment is primarily a salvage one.

Suggest that you see qualified doctor in various specialties, including active surveillance which is considered a valid treatment option that is given at major medical centers(just emphasizing AS since many patients when diagnosed want to have the cancer out of their body, overtreat with potentially great side effects.

I suggest that you read the book Invasion of the Prostate Snachers by dr. Scholz (i'm not sure if I spelled the docs name right. Since Kongo first recommennded this book, I'm sure that he will be able to post the proper spelling of the author.

You may find a local support group very beneficial.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I'll go ahead and welcome you also and sorry to hear about your husband. As you are finding there are many, many options! You have all ready been given some excellent thoughts and as others have said I would stay away from cyro at your husbands age and being a Gleason 6.

I was also a Gleason 7 (4+3) and had the robotic Davince 2 years ago and doing great. My father had Proton (Trew mentioned this treatment) back in 1997 and is cancer free. Just remember they all have the same goal to get rid of the cancer! So weigh the choices and side effects.

I see that you live in Atlanta so thought I would mention one more treatment option available to you. Its offered by a Dr. Critz in Atlanta area. His approach is a combination seed implant and radiation. The only reason I mention is since you are in Atlanta.

With your husband having the 3+3 6 and only one sample having cancer...I would personally research the Cyperknife option. Check and see if it is offered in Atlanta. They just got a unit in Chattanooga Tn for cyperknife. But everyone has an opinion including the Doctors!

Best wishes on this journey!

lewvino (age 56)

dafuston
Posts: 26
Joined: Aug 2011

lewvino,Funny you should mention Chattanooga...one of my 2nd opinions came from a friend who is a urologist there. He also mentioned that Chattanooga just got a cyberknife! It is not in the facility that works in, but he was up on the technology etc.

dafuston
Posts: 26
Joined: Aug 2011

Also, lewvino, if you don't mind sharing, I'd be very interested in the details of your robotic Davinci. Where and who performed the surgery?

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I work in Chattanooga, Tn (live in Cleveland Tn) Not in the medical field though my wife is an RN in Labor and Delivery.

After MUCH search and talking to numerous Doctors I selected Dr. Smith at Vanderbilt in Nashville, Tn. He is head of the Urology department. He will do Open or Davince procedure. It was performed Aug. 2009, PSA 5.3 Gleason 7 (4+3). I used a total of 1 pad the day the Catheter came out and that was that. Very lucky with total urinary control. On the ED front again very lucky. Dr. Smith starts patients on Levitra a few weeks after surgery as a low doze and builds the doseage. At about 3 months post surgery things worked! At two years now working great using Levitra about 1 time per week.

Not sure how much detail you are wanting but the patient and the skill of surgeon will deterime outcome of surgery. There are two nerve bundles that go around the outside of the prostate. These nerve bundles control erections. The Surgeon has to remove this and save the bundles. In my case 100% were spared on one side and in Dr. Smiths opinion 60-70% of the nerve bundle spared on the other side. This was due to cancer being present in that area. So again I have been very happy with Dr. Smith's skill. If you happen to choose surgery you DO NOT WANT A DOCTOR that has done in the low hundreds,,,,Dr. Smith had done over 1,500 robotic two years ago.

dafuston
Posts: 26
Joined: Aug 2011

Thank you for sharing your experience. You have been more helpful than you know! I'm still researching everything, and plan to check into both cyberknife and proton radiation over the next couple of days. My list of questions for the urologist is growing exponentially. Very happy for you and your excellent recovery. I hope to be reporting the same thing for my husband's case soon.

sixsixblue
Posts: 3
Joined: Jul 2011

I too, was recently diagnosed. And like one of the others responding to your post, chose Dr. Smith at the Vanderbilt Medical Center. Your husband's diagnosis mirrors almost exactly what mine was. I am also 50, had 1 out of 10 samples being positive, and Gleason of 3+3. Although that's a minimal amount of detection if there is such a thing, I elected for removal via the robotic method. I chose not to treat my cancer instead hoping for the cure. I cannot say enough positive about Dr. Smith and his staff. I'm six weeks out of surgery and doing fine. I returned to work only six days after surgery even though I still had the catheter. Regarding bladder control, I wore pads the day my catheter was removed and have been dry ever since. As you know, until you've been diagnosed, you can't grasp the amount of questions you'll have. Educate yourself as much as possible and make the best choice you can. If there's anything specific I can help you with please don't hesitate to ask.

Swingshiftworker
Posts: 655
Joined: Mar 2010

Your husband's cancer is early and you have time to make choices.

Don't let the 3 options that your urologist gave you limit the choice you make. As others have already noted, there are many other options available including various forms of radiation (other than low dose rate brachytherapy -- ie, seeds or LDR BT), including cyberknife (CK), proton beam therapy and IMRT, HDR (high does rate) BT, surgery (open or robotic) or cryosurgery and HIFU (high intensity focused ultrasound). You can also choose to do nothing -- which is called "active surveillance" and is considered a "treatment" option too.

Take the time to read up on these options -- it's complicated and you need time to process all of them -- how they're different and most importantly the different side effects. Then choose the option that is best suited to your husband's needs/wishes and see if it's covered by your medical insurer or not. If not you may have to choose another option or pay for it out of pocket.

But, please don't go in thinking that you only have 3 options to choose from. That's simply not the case.

I was a member of the Kaiser Permanente group in Northern California when I was diagnosed and I was offered a choice only between surgery (open or robotic) and LDR BT. I didn't like those choices, did my research and chose CyberKnife (CK) radiosurgery -- a form of radiation treatment which would be suitable for your husband. CK was covered by Blue Shield of California. I was able to switch from Kaiser to Blue Shield to get CK treatment and did not have to accept the limited options offered to me by Kaiser.

You have other options too!

dafuston
Posts: 26
Joined: Aug 2011

I was just researching the cyberknife! It sounds like a very good option for us. Where and when did you have yours done? We are in the Atlanta, GA area, and there are not too many cyberknife locations to choose from in Georgia. We are willing to travel, however. If you don't mind sharing, did you have any side effects? I am having trouble finding statistics on incontinence or ED with the cyberknife. Thank you for your post.

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

I had my treatment in Southern California. The facility is Cyberknife of Southern California at Vista, which is a town about 45 miles north of downtown San Diego.

The attached link is a very recent study of CyberKnife that goes into great detail about how it works and what the statistics are.

http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

Personally, I had no side effects at all in the way of urinary or fecal irritation or continence or ED. Some men have reported a sense of urgency in needing to urinate for a few weeks afterward. Treated with Flomax or Advil. Long term side effects are described in the study.

Not all insurance covers Cyberknife.

You may wish to look at the patient forum sponsored by the manufacturer of the CK machine at www.cyberknife.com. The forum is moderated by a couple of different doctors from across the country who practice CK for prostate cancer and are quite quick to answer any questions you might have.

Send me an email through this site if you want to ask any questions on the phone.

Best to you.

Swingshiftworker
Posts: 655
Joined: Mar 2010

I was treated at UCSF Medical Center in Sept 2010. I had 4 treatments every other day over 8 days (Wed/Fri/Mon/Wed).

I was a Gleason 6 w/a PSA of 4.5 at the time of my biopsy and 5.9 three months before treatment. I have had no notable side effects following treatment -- no urinary incontinence or sexual dysfunction. My PSA level has been erratic but was 3.72 in June 2011 which was lower than it was before my biopsy in Jan 2010 and lower than before treatment in Sep 2010, but not as low as others have achieved in the same time period. My next PSA test is due at the end of Sept.

CK was covered for me by California Blue Shield HMO, but it is NOT covered by all insurers. The out of pocket cost quoted to me at UCSF was about $56k. There are CK centers located in medical schools, hospitals and private clinics all over the United States and there are 3 CK centers located in GA listed on the manufacturer's site: http://www.accuray.com/treatment-centers/USA/GA. If you don't like these locations, you can find others by using this same link.

You probably can't find much info about incontinence or ED w/CK because it rarely happens. The degree of precision with which the radiation is applied to the prostate is simply unparalleled. The computer program adjusts the robotic arm and the table so that it can hit the prostate at 100's of different angles w/varying degrees of radiation, which also avoids unnecssarily radiating and damaging adjoining tissue -- particularly the rectum, bladder, urethra and seminal vesicles. The program also adjusts for movement of the body and organs which is also amazing.

The link to the study Kongo gave you will provide you with useful information about the efficacy of CK. You can also get info on the technology on the manufactuer's website at: www.accuray.com and information from providers and patients on the CK Patient Forum at: http://www.cyberknife.com/Forum.aspx?g=topics&f=2586.

IMHO, I think that CyberKnife is absolutely the best choice for men w/early stage PCa. Of course, people will say that my opinion is biased because I chose it for myself, but my prognosis is not yet clear -- ie., we do not know whether it has been successful or not yet, particularly because of my erratic PSA scores -- and I may need some follow up treatment if it fails. Even so, I know of no other PCa treatment which offers the same probability of success, with the greatest convenience and with the least risk of side effects.

Here is my assessment of the major PCa treatment methodologies in comparison w/CK, which formed the basis for my choice and which assumes someone like me w/early stage and low level PCa limited to within the prostate at the time of treatment. You should be able to confirm what I say below based on your own research of the topics.

Surgery (open or robotic) has heretofor been considered the "gold standard" for PCa but this statement does not take into account recent advances in PCa treatment and IHMO it is NOT currently the "gold standard" for PCa but is a draconian "cure" that can be worse than the disease itself. Surgery is, in fact, the treatment with the greatest risk of danger to the patient (given the standard risks of surgery) and the greatest risk of side effects (ED and incontinence for as long as a year (and possibly permanently). There are also the risks of malpractice resulting in damage to the rectum, the bladder, seminal vesicles and other anatomical structures which closely adjoin the prostate. For those men who experience continued incontinence, it may be necessary to implant an artificial urinary sphincter in order to control urinary flow, which may or may not be successful. Men who also experience continued ED may need to have a penile implant, as well, in order to simulate normal intercourse. These are worst case examples but they do happen and you can simply do a search on this forum to read the frightful stories of men who have had to deal w/these problems. One thing people who recommend surgery also often fail to mention is that the penis will become visually shorter following surgery. The penis itself is not shortened but, when the prostate is removed, the penis will be drawn into the body in order to make up the void. Men have tried to use vacuum pumps in order to keep the penis extended with limited success.

Low Dose Rate Brachytherapy (LDR BT) is probably the most common form of radiation treatment recommended for men w/PCa. As you probably already know, BT involves the manual placement of radioactive seeds or varying degrees of radiation in various locations in the prostate in order to kill the cancer. Success rates have been very good w/BT but it never appealed to me for the following reasons: 1) the seeds have a radioactive 1/2 life of about 1 year and you are continually radioactive during that this period, 2) the placement of the seeds and the amount of radiation applied to each seed is subject to "human" error -- the placement can be wrong, the radiation required can be wrong -- which can lead to inadvertent damage to adjoining organs and tissue which can lead to urinary and sexual dysfunction and other complications, 3) the seeds can move and can be expelled through the urethra which is disconcerting in itself but obviously reduces the efficacy of the original seed placement. While incontinence and ED are less prevalent w/LDR BT than w/surgery, it occurs w/greater frequency than w/CK or PBT (see below) and radiation damage to the urethra requiring a TURP (transurethral resection) in order to clear the urethra of scar tissue caused by radiation damage is not uncommon during or following LDR BT treatment.

High Dose Rate BT is different in that the seeds are not placed in the prostate permanently but only temporarily for a specified amount of time and then removed. There is still some risk of collateral tissue damage but it is not as great as w/LDR BT. If I had to choose between the 2 methods, HDR BT would be my choice.

Proton Beam Therapy (PBT) has been in use for over 10 years and also has a very good success rate with very low reported side effects. The main reason I chose CK over PBT was because CK was covered by my insurer and PBT was not. However, there are other reasons why CK is preferable to PBT: 1)PBT requires around 40 daily treatments over 8 weeks under the old protocol and around 28 daily treatments under the newer/higher dose rate protocol; in either case this requires you to live near (or move to) the PBT treatment center which is inconvenience and adds significant cost to the treatment, 2) in order to be treated w/PBT you have to be fitted w/a body cast so that you do not move during treatment and you have to have a water filled balloon inserted in your rectum before each treatment in order to prevent rectal damage; the reason for this is that the PBT beam is fixed and cannot be moved. CK is better because it only requires 4-5 treatments and the CK program/equipment adjust for the prostate's position so that no body cast or balloon is required.

This should give you a starting point for comparing the other major PCa treatment methods to CK. Feel free to ask any more questions that you may have about it.

Good luck!

dafuston
Posts: 26
Joined: Aug 2011

Thank you both for sharing your experiences with Cyberknife. That treatment option has definitely shot to the top of our list. It seems to match our goals most closely...now to find a doctor and location that we are confident in to get treatment. We'll keep you all posted.

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Kongo
Posts: 1167
Joined: Mar 2010

One thing I would urge you to do is to slow down a bit. I thought I was moving very fast and it took me three months to decide on a treatment. In the meantime I consulted with both open and Davinci surgeons, IMRT radiologists, two oncologists, and Loma Linda for proton treatment. In that time I read over a dozen books and reviewed hundreds of published studies.

Your husband's diagnosis suggests that you have the luxury of taking your time and thoroughly examining ALL the potential options. Although I am not a surgery proponent (I simply think the risk of side effects are too high) most of the studies I have read indicate that young men such as your husband do very well with surgery and within several months following prostate removal most are not bothered by incontinence and have regained most of their erectile function. Other forms of radiation (such as proton an IMRT) have advantages too. There is a downside to all treatments. My objective was to minimize the downsides based on my individual priorities about quality of life following treatment. I would urge you to go through a similar process.

Best of luck to you.

K

dafuston
Posts: 26
Joined: Aug 2011

I hear you. We are compiling a list of questions about each of the options including RRP, Brachytherapy, Cryotherapy, Proton, and Cyberknife. Two family members had Brachytherapy, one family friend urologist recommended RRP, we have spoken to several patient advocates who had the cryotherapy with little or no side effects (although I'm sure they wouldn't give you the names and contact information for folks who were unhappy...).

We plan to do watchful waiting for a period of time while we get a 2nd opinion, meet with a cyberknife physician and proton physician, and weigh all the information. I just meant that so far, the cyberknife option seems to be leading the pack as far as meeting our priorities with the least amount of side effects as possible. Since our current urologist does not use either cyberknife or proton therapy (although Emory is in the process of building a proton facility), I hope that he can refer us to someone who does to be better informed.

This is definitely not a decision we will make in 2 weeks! Thank you all for helping us translate and navigate!!!

robert1
Posts: 82
Joined: Apr 2011

Hello dafuston:

When I was first diagnosed with PCa, someone told me that researching my options would be like drinking water through a fire hose. It was.

I tend to think out a few years, so proven longer-term results were a must. You should demand documented and published evidence that any specific treatmnet option is effective for both the short-term and long-term (5-10-15 years).

There is only one chance to beat this disease the first time, and fighting recurrnace is not something anyone wants to deal with.

The more homework you do, the more obvious the treatment decision will become.

God Bless You both!

robert1

Swingshiftworker
Posts: 655
Joined: Mar 2010

Kongo: Like you, I'm no "fan" of surgery but, unlike you, I'm not reluctant to express my opinions against it. FWIW, It never made sense to me why surgery was recommended for the treatment of PCa for men of any age when less draconian alternatives existed.

Surgery is apparently often recommended for "young" men because it is believed that they will be better able to cope w/the trauma and substantial side effects of the treatment and turns out to be largely true. However, if it is unnecessary to subject men to such risks and consequences, why bother doing so at all?

We know that ALL men who have surgery have to wear a catheter for 2-3 weeks (and sometimes longer following surgery. We know that ALL men will have to wear diapers for at least a couple of months (and most longer) following that and will have to deal w/the embarrassment of the smell of the diapers and the shame of having to wear diapers and "wetting" oneself during that time period; those men who never regain control will also have to decide whether or not have an artificial urinary sphincter implanted and, even if they do, may still not regain control.

We know that ALL men will have ED following surgery. Some only for a few months, some for a year or longer and some forever. Those who never recover will have do deal w/the damage to their psyche and self-image associated with their impotency and will have to decide whether to get a penile implant or not. We also know that a man's penis will be visually shorter following surgery -- no exceptions -- because the interior end of the penis that was attached to the bottom of the prostate will now be attached to the bottom of the bladder following surgery. This consequence of surgery may also have psychological consequences.

The risk of incontinence and ED are virtually non-existent for CK and PBT and are relatively minor problems for IMRT and BT, which are the most common methods of radiation treatment for PCa currently in use. A visually shorter penis is not an issue for radiation treatment, because this problem only occurs because of the physical removal of the prostate. The use of a vacuum tube is prescribed in order to try to lengthen the penis and improve sexual performance following surgery but the effectiveness of this technique is unproven.

So, again I ask, if surgery is NOT necessary, why even recommend it? Just because it has been traditionally used to treat PCa or because most men who receive surgery are ultimately able to overcome the trauma? That makes no sense to me.

Granted there may be some men for whom surgery is the ONLY option but there are far many more men who subject themselves to surgery than need to do so. IMHO, the sooner fewer men choose surgery, the sooner there will be fewer men w/PCa who also have to unnecessarily suffer from incontinence, ED and the other humiliating and emasculating effects of surgery.

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lewvino
Posts: 1007
Joined: May 2009

Swingshiftworker:
I appreciate how we can openly discuss different treatment options on this forum. I can understand that many have a fear of surgery. I thought I would mention a few comments you made in regard to surgery and my experience. Of course there is a difference between DaVinci and Traditional surgery for Prostate cancer which may be some of the differences noted between my experience and your comments.

1. I don't beleive that the catheter is standard for 2-3 weeks of use after surgery (at least davinci). I had my cath for about 10 days. I dreaded it and the thought at first but it wasn't as bad as I feared it would be. Some Doctors are removing the cath following davinci around 5 days. I even asked my Doctor about this and his response was that in his opinion that the ideal time was around the 8-10 days for optimium healing. Since my 8th day fell on a Saturday I had to wait till a Monday for the office to be open.

2. I don't believe that All men have to wear diapers. This was a 'fear' of mine also. Myself and several other men that I know never wore a diaper following Davinci. Many will use a 'pad' for a time but not an adult diaper. I had excellent success and used 1 pad the day the cath came out. When I discussed 'my fear of adult diapers' with my wife (A RN Nurse) She mentioned that many who use 'support forums' such as cancer survivor network post 'worse case stories' since they need additional support. Many times the ones with excellent results are on the forum for a short time and then drop off for various reasons such as excellent results or not feeling they need support anymore.

I know several men that had various forms of radiation for their primary treatment and are having severe side effects from treatment. Radiation scaring etc. One man that goes to church where I do had Proton for his treatment and then less then one year following treatment developed Bladder cancer. He is fighting a different battle with a different plan than I am or the neighbor across the street from where I live that had Davinci.

I would agree with you that if surgery is NOT necessary, why recommend it? I beleive that unfortunately falls back to the doctor pushing what their speciality area is. My own local urologist is an open surgeon. He carefully discussed ALL options with me laying out the risks and side effects of each. He even went so far to tell me that no matter which option I chose he would still provide me my primary care for PSA testing. He even gave me names in the different areas of doctors that he thought would do the best for me. I ended up as I have mentioned choosing a Davinci Doctor to treat Gleason 7 and have not regretted my decision at all. Yes I still see my local urologist for my follow up PSA testing.

My daughter has just started Med school at Loma Linda University which is known for their Proton Therapy. This week is her second week of med school training. She told me yesterday on the phone that several doctors came in from various fields and discussed their various specialities with the new students. She thought it was extremelly interesting that a Doctor showed them a video on the Davinci Prostate cancer treatment rather then a video on Proton treatment. Perhaps the Proton video will be shown this week but I believe that different treatments are needed for the various stages of this cancer.

In my 'early days' on the forum I believe that I might have not been as open to other treatments. I think we tend to be overly enthusiatic about what 'worked for me'. I continue to try and educate myself on this cancer and various treatments and then try to point out and answer question on the various offerings to others facing this cancer.

Thanks for your thoughts and support that you do offer others. I don't recall what your primary treatment was and your Gleason level and would be interested if you care to share again.

Wishing you much success in your journey with prostate cancer.

Lewvino

Swingshiftworker
Posts: 655
Joined: Mar 2010

Lewvino:

You will find a detailed message above dated August 12th from me to dafuston regarding my PCa history and an explanation of why I chose CK over surgery, BT and PBT.

I'm happy and relieved that surgery was successful for you (as it has been for others) but my concern is for all of those men (like Trew here) who have had horrible experiences following surgery which, if you read this and other PCa forums, are all too common.

If I had my way, surgery would be eliminated entirely as an option for PCa treatment, unless no other treatment option is available or appropriate. Obviously, this won't happen because there are too many urologist/surgeons who have a vested interest in continuing to cut open men in order to remove the prostate, even though other equally effective and less damaging and risky methods are available to treat PCa.

Of course, even radiation treatments as precise as CK and PBT can cause problems in specific instances but, based on what I've read and heard to date, the worst of such problems are minimal and pale in comparison with scope and severity of the problems caused by surgery.

Although I may have overstated my position in a few instances, I remain unapologetic in proselytizing on this topic because the conventional "wisdom" in the medical literature, profession and community still promotes surgery over other equally effective, cheaper and less damaging and risky alternatives.

In fact, I recall this forum having a definite surgical bias when I first joined over a year & 1/2 ago. This has changed a bit since I, Kongo and others began voicing our opinions and reported our experiences with CK and other alternative methods of treatment but, even so, the view of surgery as a preferred method of treatment still persists here.

Also, as far as I know, I am the only one on this forum to consistently make the case against surgery. Even Kongo, who is "no fan of surgery," will not come out as strongly against it as I do. As a result, I feel a duty to make the case against surgery here for the benefit of those who have been newly diagnosed and are unfamiliar with the various options available for treatment, but who have been commonly offered only a choice between surgery and BT for treatment before finding out about other options here.

So, whenever someone new to this forum (like dafuston) asks "which treatment is best?", I will continue to express my unequivocal opinion that surgery is not the "gold standard" but is, in fact, the WORST choice that a man w/early stage PCa could make for treatment and that there are several clearly better choices available.

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lewvino
Posts: 1007
Joined: May 2009

Swingshitworker...Thank you for clarifying your position. I would agree with you that in the past I also believe the forum tended to be 'pro' surgery. Most likely since that was the treatment choice of majority of the posters on the forum at that time.

Two years ago I was surprised to learn about Cyperknife shortly before my surgery date. I did specifically call the closest center to me which at that time was Knoxville Tn. I spoke to a patient coordinator about my case and advised against cyperknife for my case.

I would also agree with you that surgery should NOT Be the gold standard for all cases. Especially with some of the newer technologies for low grade prostate cancer.

Also I believe it is a shame that more doctors do not truly give the patient an education as to the various treatment options. Instead they push their particular speciality.

lewvino (larry)

dafuston
Posts: 26
Joined: Aug 2011

I am so thankful for finding this forum. Thanks to all of you who generously share your experiences, newly diagnosed can see the wider variety of options that are available to us for treatment. My husband read all of your posts and we were both overwhelmed by the willingness to share your knowledge, research, and personal stories. We really can't thank you all enough. We have our 2nd appointment with the urologist on Friday and an appointment on Monday with a Cyberknife radiology oncologist to discuss that treatment option. Depending on the information we get at those appointments, we may set up an appointment with a Proton physician. Since Emory is in the process of opening a Proton facility, the urologist may be able to answer those questions as he is with Emory.

Again, thank you all for your candor, advice, and help with this overwhelming decision. God bless each of you.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

dafuston:

You may have this on your list but you might want to run a pre-approval against your insurance company for the treatment options you decide on.

Actually two years ago my first choice was going to be Proton since my father had such good success with Proton for his prostate cancer treatment. However on the insurance pre-approval process proton was denied. I did talk with the patient coordinator at the Hospital (Loma Linda, CA) and she advised against the appeal. Her reason was they had filed 3 appeals for other individuals from Tn with the same insurance carrier and they were all denied. I looked at paying out of pocket and then decided on the Davinci. I was even told by the proton center that my individual case was borderline for an excellent proton experience.

dafuston
Posts: 26
Joined: Aug 2011

The Cyberknife is covered by our insurance. I'm not sure about Proton yet. Thanks for the reminder.

Swingshiftworker
Posts: 655
Joined: Mar 2010

You're welcome, dafuston

I wish you and your husband the best. Please keep us posted on which treatment method you choose and the results of that treatment.

Regards,
SSW

dgospel
Posts: 3
Joined: Aug 2011

If it is positive treat aggressively! Ever here early detection early cure? Now the latest buzz in prostate cancer is 'oh, it is slow growing, you can adopt the wait and watch with tests every 6 months". Most men die with cancer not of it" DON’T LISTEN
My biopsy showed 2 small 'slow growth' "spots" my PSA was 4.5- I made and appointment at MD Anderson and they did another biopsy only to see if it was near the edge- it was not according to the biopsy.
I was given the choice of watching and waiting- Radiation- or radical removal. I am a Pharmacist and had already studied the choices. Radiation, if effective burns the surrounding tissue- thus if you have radiation fist they USUALLY can not do a surgery to follow it up. Watching and waiting is dangerous. I had the Robotic surgery 2 months later and when they did the biopsy post surgery there were 4 cancers, not 2, and one had just escaped the capsule. The doctor was able to get it all we think- another month waiting and you would not be getting the info. Later the doctor told me that the only accurate biopsy was the post surgery one. The gold standard in the treatment of cancer is surgery. Please don’t put it off.
The side effects have been mild stress incontinence. Not bad just different. And Impotence. The use of Cialis and a Vacuum devise takes care of that and there are corrective surgeries for both when I make up my mind to do it.
May God bless you both in the years ahead

dafuston
Posts: 26
Joined: Aug 2011

I agree with early detection, early cure. We met with the urologist from Emory on Friday and a CK radiation oncologist today. We were less than impressed with Friday's appointment...although we did get more information on Proton therapy and a referral to a facility at U of FL in Jacksonville. The CK appointment was much more helpful and informative. We may be biased, but CK is still the front runner for us. I guess we are of the same mindset as SwingShift, and radical removal just seems extreme and unnecessary at this point. Thanks to everyone else's research and help with websites, etc. I believe we can make an informed decision much more quickly than some of you pioneers who paved the way for us!

Swingshiftworker
Posts: 655
Joined: Mar 2010

I disagree strongly that surgery should still be considered the "gold standard" for PCa treatment based on my extensive comments previously posted in this thread. I also disagree that surgery is NOT possible following radiation treatment. Just read Sophiamia's recent thread (captioned "Salvage Prostatectomy") on his salvage surgery 8 years following brachytherapy treatment.

However, I do agree that one should not unnecessarily delay PCa treatment. Biopsy results and PSA tests are just "guesstimates" of your condition and doing nothing could have fatal or irreversible consequences.

The only question is which treatment to pursue. That choice has to be made by each man based on his individual needs/wishes and circumstances but no decision should be made without considering ALL of the options available. Surgery is just one of those options and IMHO is the worst one for those w/early stage and low grade PCa.

Ciao!

hopeful and opt...
Posts: 1357
Joined: Apr 2009

Active Surveilance 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 initally treated patients with LRPC, so the treatment decisions will be very similar." I've been doing Active Surveilance for the past two and a half 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

dafuston
Posts: 26
Joined: Aug 2011

We met with both the urologist at Emory and the radiation oncologist at Kennestone where the CK facility is. We chose CK, hands down. The marker seeds were implanted this week...the ct scan and MRI are next week, and the 1st of 5 treatments start 2 days later. We have chosen to spread the treatments out over 2 weeks after reading that even 1 day between treatments reduces the chances of rectal bleeding from 38% to 0%. So we are feeling very positive about our choice and prognosis. Again, thank you all for your encouragement and experience.

dafuston
Posts: 26
Joined: Aug 2011

We met with both the urologist at Emory and the radiation oncologist at Kennestone where the CK facility is. We chose CK, hands down. The marker seeds were implanted this week...the ct scan and MRI are next week, and the 1st of 5 treatments start 2 days later. We have chosen to spread the treatments out over 2 weeks after reading that even 1 day between treatments reduces the chances of rectal bleeding from 38% to 0%. So we are feeling very positive about our choice and prognosis. Again, thank you all for your encouragement and experience.

Swingshiftworker
Posts: 655
Joined: Mar 2010

FYI, I had 4 treatments @ UCSF every other day w/2 days rest over the weekend between treatments #2 & #3; 9.5 Grays each for a total of 38 Grays. Some rectal bleeding from the marker placement. No bleeding, incontinence, ED or anything else from the treatments. My post treatment PSA scores have been irregular but the trend has been down. My next PSA test (the 4th followup at year 1) is due the end of this month. Hoping it will be lower than the last, but my RO says it could take up to 4 years to reach a nadir.

The CK "club" is growing. Think there are 4-5 (maybe 6?) of us here now. Let us know how it goes for you!

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Dafuston

I am gal to know that you got to a decision. You both have done your “home-work” well and chosen the best to handle your husband's case. Confidence is a big step to success so that you are already at the winning pathway.
He will do well and soon become free from that bandit.
Please let us know about your experiences along the process.

Wishing a successful treatment and an eventless quick recovery.

VGama

dafuston
Posts: 26
Joined: Aug 2011

My husband is getting his first of five CK treatments today. The technicians took both of us back and gave us a "tour" of the Cyberknife. Fascinating, really! He's been back for a little over an hour now. We will have a break until Monday till the next treatment. Then Wednesday, Friday and finally Monday the 19th. So far so good.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Glad to hear that your husband has started his treatments. I'm sure he will do fine. Just think when he graduates on Sept. 19 he moves into a new club. The Cancer Survivor club!

larry (lewvino)

dafuston
Posts: 26
Joined: Aug 2011

My husband's last CK treatment is tomorrow...other than some discomfort sitting up straight in a chair and some frequency/urgency with urination, all is goig very well...he has been able to work, attend our son's football practices and games, etc. He does feel fatigued, but so far, so good.

jtl's picture
jtl
Posts: 422
Joined: Sep 2011

I had my surgery 9 years ago when I was 55 years of age. I was offered all of the options and chose a prostatectomy. Robotics were in their infancy so I found a wonderful Dr on the east coast of FL. I was in the hospital overnight, have no visable scars, had no external stitches and never took so much as an aspirin for pain. It is worth checking out.

http://laprp.com/

johnnymacswife
Posts: 1
Joined: Sep 2011

Hi all,
New member and first time posting but felt the need to share our story. In Oct 2010 hubby (59) got the dreaded call that his PSA came back at 18.6. A biopsy was done and the cancer showed in all areas. After numerous other tests, it looked to be contained in / on the prostate. We did a lot of research and decided to go with aggressive treatment. Decided on robotic prostatectomy and after more research narrowed it down to three surgeons ( talked to all three) then made our choice. The surgery was done in December with the biopsy showing that the cancer had reached the outside of the prostate. Had to wait a couple of months for the next PSA and it came back at .018. Since the cancer wasn't contained in the prostate we made the decision to go with radiation(39 treatments) which ended in July. John's had side effects from both the surgery and the RT but still stands by the choices that were made. He just got his latest PSA last week which was " less than .01 ". So its still a waiting game but we're not as stressed as we could have been waiting for a "time bomb" to go off ( his words, not mine). To all who have been just diagnosed, the key word is research, check out all the major sites, talk to other people, get different opinions and pray to make the right choice. Everyone is different and our way may not be the way you need to go, but have faith, we have the worlds best mediacal treatment available to us.

dafuston
Posts: 26
Joined: Aug 2011

My husband had his last CK treatment yesterday! We go back in 3 weeks for a PSA test, then every 3 months until the 1 year mark. We are very optimistic and certain that we made the right choice for us. Thank you all for all your feedback and encouragement.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Congrats on finishing the treatments. Let us know that first PSA.

Lewvino

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