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Recently diagnosed with prostate cancer.

S103462
Posts: 8
Joined: May 2012

I’m new to this discussion group. Just recently diagnosed with early stage prostate cancer (T1C) and have spent the past few weeks reading many of the posts on this blog.

I’m 56 years old, in good health, African-American, married.

My annual PSA tests were increasing from 3.0 just a few years ago to 5.7 earlier this year.

Nothing noticeable with the DRE exam. No physical symptoms. No urinary difficulties. Family doctor recommended a biopsy and referred me to a local urologist.

Transrectal ultrasound (TRUS) went as expected. (Experience was uncomfortable, but not the horror story that I’ve read about elsewhere.) TRUS diagnosis was Prostatic Adenocarcinoma of biopsies on both left and right side of prostate.

Urologist indicated that the prostate was slightly enlarged.

Of the 10 biopsies taken, 5 of the biopsies (3 on the left; 2 on the right) indicated prostatic adenocarcinoma (percent involvement was between 25% and 35% for each of those 5 tissues biopsied). Gleason scores on all of those were 6 (3 + 3). The other 5 biopsy results were benign, with one of those showing tissue inflammation.

No history of prostate cancer in my family, though there have been a number of lung cancer and throat cancer on the male side, and uterine cancer and ovarian cancer with the women. (Not sure if all that matters with this situation.)

Urologist is recommending an aggressive approach, given that I’m African-American. On June 1st we’re meeting to discuss options. Wife is actively involved and asks questions that I might be missing. So, I’m in a continuous data-collection mode between now and the date of my next appointment (and beyond).

I’ve read on this blog (and other sources) about pros and cons about the different types of procedures. Certainly doesn’t appear to be one best answer. Side effects appear to be significant no matter the option taken – ED, urinary incontinence, or bowel problems are of major concern (of course).

Given the side-effects, I’d probably choose the wait-and-see approach, but (1) the wife isn't supportive of that idea, and (2) the urologist indicates that isn’t a good option given the race-factor.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

S

Welcome to the board.

I’ve noticed in your post that you are well informed in regards to your situation. Nevertheless you may want more tests to get you to a proper diagnosis and therefore to a better decision.

You should inquire with your doctor about your clinical stage. T2c is probably the correct classification because the biopsy is positive to cancer in both lobes. PAP tests and a free PSA can give you more details of your status and so it is to repeat the DRE done by another urologist specialized in prostate cancer.
It is common to get negative results from Image studies (CT, MRI, Bone Scan, etc) when the PSA is lower than 10 (yours is 5.7) but those could give you additional information now and it could serve you as a “base test” for future reference. Apart of that, some type of cancerous cells produce lesser PSA, which may not be your case.

Other information you could get is the prostate volume because it can provide you with the density in regards to the percentage of found cancer in needles. The PSA doubling time is also an element important to access the aggressivity of the cancer. You will need to get a dated chronology of the tests.

As you commented, African-Americans are at higher risk to get prostate cancer (PCa) however such risk does not mean that the cancer in African Americans are more aggressive than of the cancer in other males (as far as I am informed). You have been diagnosed and now you should concentrate in what is better to you; AS, radical treatment or palliatives.

Radicals may provide cure. The NCCN guide lines suggest them to young patients. Nevertheless, many guys with low growth types of cancer choose to wait and take action at a latter timing in life. Surgery particularly is not recommended for young guys still expecting to “create” a larger family (fathering children). The risks and side effects of radicals both surgery and all types of radiation may cause “damage beyond repair”, and that should also be considered when deciding.

I would recommend you to get second opinions from various specialists to better access your case. Remmember that treatment outcomes are better if done by specialists at modern facilities, and that may not be the case of the doctor and hospital where one has been diagnosed firstly.

Good books to read are;
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007),
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers,
A compendium on Prostate cancer and care; http://www.lef.org/protocols/prtcl-138.shtml
Side effects from Radicals; http://www.pcf.org/site/c.leJRIROrEpH/b.5822789/k.9652/Side_Effects.htm
Story of PCa survivors; www.yananow.net (info, histories of like 1,000 patients many are contactable by net)

Something to consider is to prepare a list of questions to expose to the doctors when consulting. In my case, I got four second opinions before deciding on a treatment. It took me 2.5 months to get to a conclusion. My diagnosis was worse than yours with six out of six positive needle biopsy, voluminous cancer, Gleason score of 5 (2+3) and PSA 22.4 but asymptomatic and negative DRE and image studies.

Wishing you luck in your journey.

VGama

S103462
Posts: 8
Joined: May 2012

Thanks for the comments – every little piece of information helps.

I’ll have to check back with the urologist about the T1C that I wrote down. In the notes that I jotted down while speaking with him, I wrote that T1c meant that the tumor cells were present; not palpable during a DRE; and that the cancer was detected during needle biopsy. He said that the T1c is often found during a prostate biopsy due to a high PSA blood level. But, I will check with him as to whether the biopsy being positive to cancer in both lobes makes it a different stage.

I forgot to mention before that I had both a CT scan and a bone scan done on May 10th, and was told that both were negative.

I’ll check on obtaining the prostate volume results as well – as I understand the process, he should have been able to obtain that during the TRUS.

I’m not familiar with the “PSA doubling time.” I’ve checked my PSA results going back about 8 years, and they are:
7/2004: 1.6
8/2005: 1.8
8/2006: 1.9
12/2007: 2.1
1/2009: 2.6
4/2010: 2.7
3/2011: 3.4
1/2012: 4.0
2/2012: 4.2
4/2012: 5.7

Not interested in creating a larger family at this point so, that isn’t a concern. (My 5-month old grand-daughter takes up a lot of my time!)

Thanks for the reading references. The urologists recommended and I’ve already started reading:
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh, second edition
100 Questions and Answers About Prostate Cancer by Pamela Ellsworth, MD and John Heaney, MD
Promoting Wellness for Prostate Cancer Patients, by Mark A. Moyad, MD

And yes, I’ve already started my list of questions as well.

Again, thanks for the great comments!

hunter49
Posts: 204
Joined: Oct 2011

Welome to the club and sorry you had to join. You are getting some good feedback from some very smart and good people. Take time and digest it. I would say 3 important fact I see. First dump your doctor, he is wrong on your clinical satge. T1c is when cancer is in a single lobe. You are a T2c, same as me. Second, being African American does not require more aggressive treatment but more watching for the beast at a younger age. Lastly, your doctor should have suggested something was wrong with your PSA rising each year and then jumping as it did in 11 months by .7. I would also say do not be surprised if you do surgery that your Gleason is upgraded to a 7. You have options, weigh them and in the end make the decision with your wife. I had surgery and glad I did since I saw exactly what I had and if it comes back I will be able to tell by my PSA coming back. Good luck and stay strong

Swingshiftworker
Posts: 649
Joined: Mar 2010

Not sure how much research you have done already but all treatments for early stage prostate cancer (PCa) -- which is what you have -- DO NOT have significant side effects.

Of all of the available treatments, surgery is by far the worse in terms of possible side effects but both CyberKnife (CK) and Proton Beam Therapy(PBT) have both been found to be as effective as surgery in treating early stage PCa with very few side effects.

I and some other men here opted for CK and none of us reported any notable side effects following treatment; no ED or incontinence. One man here reported significant problems caused by an infection associated w/the transrectal placement of the markers in his prostate but the same risk applies to any transrectal procedure -- including biopsies.

So, if you haven't heard of CK or PBT yet, I suggest you research them too.

If you call Loma Linda University you can probably get a free copy of Robert Marckini's book "You Can Beat Prostate Cancer And You Don't Need Surgery To Do It" which recounts his experience w/PBT or you can visit his organizations website "Brotherhood of the Balloon: http://www.protonbob.com/proton-treatment-homepage.asp.

FYI: The name of the organization is a "tongue in cheek" reference to the water filled balloon that has to be inserted in the rectum before each treatment in order to protect it from the proton beam radiation.

If you want to find out more info on CK, I suggest you view this video which gives a good overview of the procedure by Dr. Don Fuller affiliated w/the CK Centers of San Diego: http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001.

Accuray is the manufacturer of CK and their site is also a good source of info on the procedure: http://www.accuray.com. Accuray's Patient Forum, which is frequented not only by patients but also physicians, including Dr. Fuller, who use the procedure in their practice, is also a very good source of information on the treament: http://cyberknife.com/forum.aspx?g=topics&f=2586.

FWIW, I chose CK over PBT because CK currently provides the MOST accurate method of delivering radiation to treat prostate cancer; CK can adjust correct not only for body but also organ movement during treatment and is calibrated for SUB-mm accuracy. CK also only requires 4-5 treatments vs 28-40 for PBT and also does not require being fitted for a body cast to restrict movement during treatment or the placement of a water filled balloon in your butt prior to each treatment as required w/PBT.

I also chose CK over AS (active surveillance) because I felt the risks of treatment were minimal and offered me the possibility of an immediate cure as opposed to the continual worry over whether the PCa was growing or not. That doesn't mean that AS would not be an appropriate choice for you, but I personally wasn't willing to deal w/the uncertainty given the choice of going w/CK instead.

Hope you find this information useful. Good luck!

S103462
Posts: 8
Joined: May 2012

Thanks for the comments.

Your assumption is correct. I’m still coming up to speed on this and until yesterday, I had not heard of CK. A friend I was talking with yesterday mentioned that is father used that method and had great success. Also, I had not read specifically about PBT – though I had started reading about external radiation, it appeared that external radiation was an option to be used if the cancer had spread beyond the prostate. Perhaps a bad assumption on my part….

The other treatments I had read about were various surgery methods, brachytherapy, and cryotherapy,

My friend told me where locally his father had CK done. I’ll stop by that facility in the next couple of days, ask more questions, and do more research.

Again, thanks for the comments!

Swingshiftworker
Posts: 649
Joined: Mar 2010

Yes, EBRT (external beam radiation therapy) is not limited to the treatment of PCa that has migrated beyond the prostate but, for those who have such a cancer, IMRT (intensity modulated radiation therapy) in combination with hormone treatment is commonly used.

EBRT has made significant advances in the past 5-10 years and the many problems involved in the use of unfocused EBRT in the past have been widely reported. For this reason, you'll need to pay close attention to the type of EBRT used in reported studies. You'll find the the report of significant problems involving the use of EBRT involves earlier studies and you'll have to distinguish between those and the more recent studies that involve the use of more advanced (and focused) forms of radiation that limit the damage to collateral tissue most commonly associated w/side effects such as ED & incontinence as well as damage to the urethra, bladder and rectum.

Among the newer radiation techniques used are IMRT, IGRT, 3D CRT, CK (more generally SBRT) and PBT. Just Google the initials to find out about these various methods. CK is the most recent and most advanced method of radiation treatment available but it shares one thing in common w/all of these methods -- the development of a means to more accurately deliver the radiation in order to kill the cancer w/o damaging non-cancerous tissue in a way that could never be accomplished by surgery.

BTW, I am NO fan of surgery and IMHO it is an archaic and outdated method to treat PCa. Most men suffer some form of ED and incontinence following treatment and, although many men recover from these side effects, many men DO NOT. Indeed, the unnecessary treatment of early PCa by surgery resulting in such problems is one of the reasons why the United States Preventive Services Task Force (USPSTF) recently suggested that early prostate screening is not longer advisable.

See: http://www.digitaljournal.com/article/325283

This is a controversial suggestion and I don't think anyone believes that men should no longer be screened for PCa but the point of the recommendation is still germane. Fact is, most men are unnecessarily treated for PCa and most of them are treated w/surgery with sometimes horrific results (research penile implants and artificial urinary sphincters).

If you're interested in learning why urologists are so eager to recommend surgery for PCa even though they are aware of its risks, I suggest you read the following paper written by a physician who explains the reason in excruciating detail:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

See also the following summary of the PIVOT study which concluded that men w/early stage PCa were not benefited by surgery and that active surveillance was a better method of "treatment" instead:

http://biotechstrategyblog.com/2011/05/aua-2011-results-from-pivot-study-show-no-benefit-from-radical-prostatectomy-in-low-risk-early-stage-prostate-patients.html/

Regarding brachytherapy (BT) and cyrotherapy, here's what I know. There have been advances in cyrosurgery BUT my radiation oncologist warned me against it because (as he said) it almost always results in irreversible ED. So, given that advice, I immediately ruled out cyrotherapy as treatment option.

As for BT, there are 2 types: LDR (low dose rate) BT and HDR (high dose rate) BT. You've probably already heard about LDR BT, which is the most common, and involves the placement of radioactive seeds in your prostate. The method has been used widely and is generally successful but it is NOT w/o the possibility of significant side effects. The quality of LDR BT depends on the quality of the planning that goes into the decision of the "pattern" of seeds (location and radiation dosage) to be placed in your prostate in order to treat the PCa and in the actual placement of those seeds.

Any error in planning or placement can results in collateral tissue damage that can result in the same types of problems reported for early forms of EBRT -- ED, incontinence and/or damage to the urethra, bladder and rectum. Treatment also can be affected by seed migration after the seeds are placed.

If you want to go w/BT, I suggest that you ONLY consider HDR BT, which involves the "temporary" placement of a string of seeds in your prostate (about 24 hours). There is the same risk of side effects due to poor planning and placement BUT you will not be radioactive for a year (the 1/2 life of the LDR BT seeds) and you won't have to live w/the seeds (radioactive or not) which will remain in your prostate for life.

BTW, CK is designed to emulate treatment w/HDR BT. See: http://www.cyberknife.com/uploadedFiles/For_Your_Doctor/500345%20B%20HDR%20Whitepaper.pdf

I hope you find this additional info helpful.

Good luck in further investigating CK and the other treatments available and please don't delay in getting a 2nd Opinion on your biospy!!

hopeful and opt...
Posts: 1353
Joined: Apr 2009

I am sorry that you have been diagnosed with the beast, and need to post here, however you have come to a good place for information.

Here are my comments.

First, as Vasco mentioned, although AfroAmer are more like to be diagnosed, to my knowledge there is no difference in treatment as compared with others. The gleason score shows the aggressiveness of the cancer.

Diet is very important as a first defense. There is a book "The China Study" by t colon cambell that basically avocates a heart healthy diet san dairy and meat. It is well worth reading. Science does not as yet confirm my own personal opinion that is a very good chance of AfroAmer having greater chance of Prostate Cancer because of poor diet(as well as all Amer males in general).

It is very, very , very important to have a second opinion of the pathology of your biopsy so that you are not under or over treated. There are only about 10 experts in the USA.

There is new molecular urine test called a pca3 which will give more information about the likelihood of the aggresiveness of your cancer.

Additionally it is important to have an MRI, hopefully with a tesla 3.0 magnet along with a spectroscopy to determine if there is extracapsular extension or not. have an idea of where the cancer is in the prostate, one lobe or two, how great the suspicious lesions are, it will also show the size of the prostate so you can determine prostate density equal psa deivided by prostate size; the smaller the better....for active surveillance you want a 0.15 or less( I think that the biopsy information also shows prostate size).

Bone scan is not recommended by the american urological association for gleasons under 8, since it is very unlikely that it will show anything.
As a person who is being treated for over three years with "active surveillance with delayed treatment, if necessary" I spend a lot of time studying this.

You appear to be on the cusp, since ideally one looks for approximately 2 cores positive, gleason 6 or less, less than 50% involvement and psa less than 10 and prostate density less than 0.15.

I strongly suggest that you see a specialist of Active Surveillance hopefully at a major teaching hospital for input.

You may feel to click my name to see what been going on with me.

You may feel to contact me on a one to one, or anyone else who posts via the csn net work. We are all pretty helpful.

best

S103462
Posts: 8
Joined: May 2012

So many options and possibilities. I'm an engineer -- I'm used to "if this, then A, otherwise B...." and looking for a clear solution to a problem. This situation has so many variables and moving parts that it seems almost impossible to be confident of making the "right" decision. (There ought to be a flowchart for this decision!!)

My urologist recommended a book for me to read -- the first chaper starts off "Heart Healthy Equals Prostate Healthy" It's interesting that all of us pretty much know by this time what a healthy heart diet looks like. Unfortunately, dairy is my favorite; meat -- in small portions as much as it constitutes a balanced diet. This is certainly gonna be interesting.

As for the poor diet connection with being African-American -- I always figured that was a socio-economic related dietary connection. Always being fairly well-off, and my diet being typically "American", I always assumed that I would escape the poor diet connection to prostate cancer. Besides, with my genes being made up of Black, Mexican, Irish, and Cree Indian, I figured that I would escape the possibility of this condition with everything mixed up like that. Wrong again. (A little humor mixed in with all this seriousness....)

Anyway, I'm curious as to whether insurance covers all these 2nd and 3rd opinions, as well as the plethora of additional tests many of you have mentioned. What did you do -- contact your insurance company and ask what they cover? Or did you just go ahead on your own for those additional items, and let the financial chips fall where they may?

I do appreciate all the advice.

hopeful and opt...
Posts: 1353
Joined: Apr 2009

In my case I am lucky enough to have medicare and a PPO as a secondary, so I can go to any doc that I choose and have all these tests.

Pretty much all of my bills were paid except there was a problem with my former employer and my PPO in 2011, where they did not cover my bills.

The only procedure that was not covered by Medicare was the spectroscopy which was considered investigational. Out of pocket, I paid $900.00. I knew of this cost upfront.

Health and medical care ranks as a top issue to me; so I am willing to selfpay if necessary to hire an "artist", or determine whatever diagnostic test necessary for a successful outcome.

I believe that the results of most of these tests that we recommend will provide basic information about your cancer, so you can more informaton to better make your "right" decision about selecting and monitoring your treatment.

You mentioned flow chart, one flow chart is, "nccn clinical practrice guidelines in oncology" prostate cancer wwww.nccn.org

"As for the poor diet connection with being African-American -- I always figured that was a socio-economic related dietary connection. Always being fairly well-off, and my diet being typically "American", I always assumed that I would escape the poor diet connection to prostate cancer. Besides, with my genes being made up of Black, Mexican, Irish, and Cree Indian, I figured that I would escape the possibility of this condition with everything mixed up like that. Wrong again. (A little humor mixed in with all this seriousness....)"

I guess that you picked the wrong diet "American" which is in my opinion the worst. You had beter choices available, African and Cree Indian...LOL

.

Swingshiftworker
Posts: 649
Joined: Mar 2010

You're getting a lot of info thrown at you and, like all of us had to do when we first learned that we contracted PCa, you need the time to review and digest everything you're learning. As you've already learned, PCa is a complex disease and it is not amenable to a "one size fits all" approach to treatment.

There are many options and they all really depend on your diagnosis -- mainly your Staging and Gleason Score.

I took your statement about your Stage T1c diagnosis at face value but the others are right -- you are probably a T2c, which involves cancer in both lobes that had not spread beyond the prostate and was not detected in a DRE.

For further info on PCa staging: http://en.wikipedia.org/wiki/Prostate_cancer_staging and
http://en.wikipedia.org/wiki/Prostate_cancer_staging

If your staging was incorrect, your Gleason score may be too. It is always advisable to get a 2nd opinion on the biopsy because the assessment is complicated (based on very subtle differences in cell structure) and requires special expertise to do accurately. I had my 2nd opinion done by Dr. Jonathan Epstein at Johns Hopkins, who is highly regarded as one of a few experts in the field of PCa pathology.

Here's some info on him: http://en.wikipedia.org/wiki/Prostate_cancer_staging

You can send your slides directly to Johns Hopkins (and can ask that Dr. Epstein perform the assessment) by following these instructions:

http://www.hopkinsmedicine.org/international/patients/second_opinions.html

The cost to me was $170 which I paid out of pocket but most insurers will reimburse the cost of a 2nd opinion if you request it; I didn't.

Once you have a better grasp of the nature of your cancer, you can make a better decision on how to proceed with treatment. With a Stage T2c and Gleason 7 diagnosis, some providers "might" be unwilling to treat you w/CK or PBT but there is NO strict policy against it. Previously, providers were careful to pre-select patients for CK & PBT in order to better insure successful treatment. These patients tended to be in the T1c, Gleason 6 and PSA less than 10 category.

One of the reason for this is to yield better results (studies) necessary to convince insurers to pay for such treatments and to remove the treatments from the "experimental" category. Although some insurers still consider CK & PBT "experimental" and refuse to pay for it, others have come to the opposite conclusion. In my case, Blue Shield of CA changed it policy against paying for CK just before I received my treatment. Each insurance group under the Blue Shield/Blue Cross umbrella makes its own policy on this. So, if you want to go w/CK or PBT, you'll have to find out if your particular insurer will pay for it.

It's good that you're considering changing your diet but, if you already have PCa, doing so really won't do anything eliminate the cancer already there but it will improve your health generally and "may" reduce the probability of further growth and/or spread of the cancer. It will also help you cope physically w/the negative effects of treatment, if any.

Here's a link to a paper published on Cancer and Nutrition by the cancer center at the University of SF Medical Center where I was treated:

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Good luck!

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

S,

Welcome to the forum and I am impressed with the research and grasp of the situation that you have achieved since your recent diagnosis.

Like others who have commented on your post I am gobsmacked that your doctor would suggest a more aggressive treatment because of your race. While it is true that African-American men suffer a higher incidence of prostate cancer compared to whites I have never read anything that suggests that treatment of an African-American should be more aggressive because of this. Since there are many areas in Africa where the indigenous population has an extremely low incidence of prostate cancer compared to men in Western nations I am inclined to suspect that dietary norms within many parts of the black community in America are more causative than any racial gene. Frankly, that suggestion makes me suspicious that your urologist is using the "race card" here to pressure you into a more aggressive treatment that might otherwise be warranted. From everything I know your cancer treatment should be based on your diagnosis pathology which is a function of your staging, Gleason score, PSA history, and physical symptoms and imaging results. From what you have described, it seems you have been diagnosed with a fairly low risk form of prostate cancer. Myself, and many other men who post on this forum share such a diagnosis.

I hope that you seek consultations from different doctors that specialize in prostate cancer such as a radiologist, oncologist, and different surgeons. In my own case when I was diagnosed with a 3+3=6, T1C, and a single positive core and 15% involvement the first three doctors (all with surgical backgrounds) suggested an aggressive approach so they could "get it out." I am now thankful that I continued consulting with radiologists and doctors from Loma Linda (proton therapy) before I made a final decision. One thing all of the specialists I saw said was that regardless of which treatment choice I elected, I stood an excellent chance of never having to worry about prostate cancer killing me in the long term and that almost any treatment method stood a high degree of success. Indeed, if you look at the statistics between surgery, radiation, land active surveillance there is virtually no difference in long term mortality. What is a big difference is potential adverse side effects and quality of life and I urge you to carefully consider these as you make your decision.

You wrote something in your initial post that really struck a chord with me and that was your wife's unease with surveillance. My wife had the same thoughts and her attitude was "you have CANCER...you MUST DO SOMETHING!" We have been conditioned in our society that cancer is a killer. While I don't know much about other cancers, I have done my homework on prostate cancer and while it indeed does sometimes kill men (about 1 in 32) most men with prostate cancer die of some form of heart disease. We die with the disease not of it. While your wife's opinions are obviously important, this is YOUR disease and you will likely know a lot more about it than she does. I think I allowed my wife's thoughts to influence my treatment decisions and although she mean well she knows very little about prostate cancer even today. If I had it to do all over again I would have discounted her (and other well meaning relatives and friends who do not have medical training or have done research) opinion.

In the end I chose CyberKnife radiation treatment as some others on this forum have done. I have had no side effects whatsoever and my treatment was uneventful. No ED, no urinary issues, no bowel toxicity. My treatment was done almost two years ago in June 2010.

Best wishes for a productive research process to make your decision. There are many on this forum who are keen to provide you whatever support we can.

All the best,

K

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Hello and welcome, I was diagnosed with PC in Jan of 2011, Had Gleason score of 2.25, 18 biop samples taken all were between 40 to 60 percent cancer, my doctor informed me that my cancer was very agressive and that I needed to start getting treated. He took time to explain each treatment methods and the side effects. These vary from person to person. It is good to have your wife with you in this. My wife has been a constant support,helps me to keep the information correct. Over the last year I modified my diet big time. I am 90 percent vegetarian now, I eat some chicken and fish. My wife has helped me a lot on this. You are going thru a lot of confusion right now, When you meet with the doctor have him explain all of the methods and the side effects, my doctor was very good at this. My PSA score was the bad 7. I opted for surgery due to the type of cancer that I had, surgery has it side effects. I had no symptoms when I went to see the urologist for my initial consultation. The only item was that the prostate was swollen. The psa score was low at 2.25 but it had shifted quickly it went from a .8 to a 2.25. My doctor flagged me on this and sent me to see urologist. Take your wife to the doctor visit and above all ask questions on everything, this is going to be the biggest decision of your life. At the present time my psa score has been .02 my doctor see's me about every 6 to 8 weeks and I also get lab tests. Again sorry to hear about this. The heart healthy diet is one that needs to be followed, I feel a lot better since I started this

CThughes
Posts: 21
Joined: Apr 2012

Man, the more I read on hear the more I wonder if I made a mistake going with RP. So far incontenance has not been a problem, and I don't know about ED really, my fiancé left me right after the surgery, and confidence is a major thing now. But my urologist felt like my young age, 53, and evidently rapidly rising PSA from 4 to 12.something in a little under 6 months warranted removal after the positive biopsy. I'm thinking I should asked a lot more questions and done a lot more research. I really trusted my doctor as he literally saved my life. I had a kidney stone while out of town working and the hospital ther did some kind of scan to determine it was a kidney stone. They said that's what it was, go home and if you don't pass it in a couple of days, go see your urologist.

Well I didn't pass it right away, so I went on in and he said no big deal, it could take a week. But he went ahead and called the other hospital, got my file, and found where they had noted a shadow in my kidney. But they didn't tell me anything about it, ask me for my doctors name so they could send him the file, or anything. Well it turned out to RCC and they caught it before it metastasized and I seem to be fine with one kidney. But if hadn't been on top of things I was screwed. So mistrusted him when he recommended ssurgery. Now the more I read the more I wonder if that was a mistake.

rch
Posts: 79
Joined: Nov 2011

TNM Staging for Prostate Cancer:

JOHNS HOPKINS HEALTH ALERT-Posted Jan 12 2012

UNDERSTANDING THE TNM PROSTATE CANCER STAGING SYSTEM

Determining the extent of prostate cancer is important for predicting the course of the disease and in choosing the best treatment. The TNM (tumor, nodes, metastasis) staging system is used to describe a cancer's clinical stage, or how far it has spread. This Health Alert provides an explanation of this important prostate cancer staging system.

The TNM system assigns a T number (T1 to T4) to describe the extent of the tumor as felt during a digital rectal exam (DRE). The N number (N0 to N1) indicates whether the cancer has spread to any lymph nodes, and the M number (M0 to M1) indicates the presence or absence of metastasis (spread to distant sites). The T and M designations are divided into subcategories (designated a, b, and c) that provide further detail on the extent of the cancer.

The TNM clinical stage is a sophisticated method of predicting the probability that a prostate tumor is confined to the prostate or has spread beyond the gland. Here's a description of this important staging system:

T1: Tumor CANNOT BE FELT during DRE or seen with diagnostic imaging

•T1a: Tumor found incidentally during surgery for benign prostatic hyperplasia (BPH) and is present in less than 5% of removed tissue
•T1b: Tumor found incidentally during BPH surgery but involves more than 5% of removed tissue
•T1c: Tumor found during needle biopsy for elevated PSA

T2: Tumor CAN BE FELT during DRE but is believed to be confined to the gland

•T2a: Tumor involves one half or less of one side of the prostate
•T2b: Tumor involves more than one half of one side but not both sides
•T2c: Tumor involves both sides of the prostate

.T3: Tumor extends through the prostate capsule and may involve the seminal vesicles
•T3a: Tumor extends through the capsule but does not involve the seminal vesicles
•T3b: Tumor has spread to the seminal vesicles

.T4: Tumor has invaded adjacent structures (other than the seminal vesicles), such as the bladder neck, rectum, or pelvic wall

NO: Cancer has not spread to any lymph nodes

N1: Cancer has spread to one or more regional lymph nodes (nodes in the pelvic region)

MO: No distant metastasis

M1: Distant metastasis
•M1a: Cancer has spread to distant lymph nodes
•M1b: Cancer has spread to the bones
•M1c: Cancer has spread to other organs, with or without bone involvement

Posted in Prostate Disorders on January 12, 2012

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

CT,

I wouldn't beat yourself up on this decision. There's nothing you can do about it anyway so press on. As your doctor told you, younger men tend to do well with surgery and most recover continence and achieve the ability to have sexual relations. None of us are going to perform in bed like we did when we were in our 20s but that's going to happen whether or not we have prostate cancer.

It sounds like you have a good doctor and I am sure there is a wonderful, understanding woman just around the corner waiting for you.

Best,

K

MTIVVC
Posts: 5
Joined: May 2012

What would your wife do, or what would your position be, IF...she had a SLOW GROWING CANCER some where inside of her??

...what I heard, when I was diagnosed was the term

...SLOW GROWING AD nauseam

...thing is, I happen to be just 62years young,dont take any RX

...when diagnosed, I reserched all my options(mind you, doing heavy analysis is what I do professionally)...wait and see, go for minimally invasive, go for radiation, go for regular surgery...just which way...

It became painfully obvious to me, the medical folks like the term SLOW GROWING waaaay too much...it appears to myself, the term SLOW is where they put the emphasis

...I,on the other hand put the emphasis on the GROWING part of the phrase...SOMETHING WAS GRWOING INSIDE OF ME...PERIOD!!!

Reality is, it IS, growing...but,what is often left out is, WHAT AND WHERE IT WOULD GO, if it metasizes/spreads...

Since I am a Certified Estate Planner by trade, I have done many of this kind of planning for clients/families...with one goal

...making certain a COMPLETE SENTENCE leads to a COMPLETE THOUGHT...and looking at MORE THAN ONE choice is relevant

...here is one of my standard scenarios I pose to families regarding treatment protocols..

You go to a casino, look around at the opulence and the pagentry

Would you want to be betting with the gamblers...or the owners of the casino

...pretty simple question

...the house/casino does not win ALL the time

...it just has the odds in its favor

...so, who would you want as your gambling partner, the one with the best odds...or the worst odds...

And, the longer you wait, the more the odds favor the casino...

S103462
Posts: 8
Joined: May 2012

Well, I’ve been diligently working through this process – reading as much material as possible on my various options, followed-up with my urologist to discuss details of prostatectomy, referred to a radiology oncologist (RO) to discuss details of radiation therapy, and in a few days I’ll be speaking with another doctor about CyberKnife (CK).

My urologist indicated that even touching the nerve bundles damages them some, and gave me a 50/50 odds of ED. The RO who I saw today said that with the biopsies showing that both sides of the prostate were cancerous that surgery would be difficult not to damage both nerve bundles. But, he also said that radiation would cause some ED effects as well.

The RO said that it’s good that I’m looking at all the options, but that at my age (56) and the early stage we’ve caught this at that there really isn’t a wrong choice – just which one I can live with, not looking back with regrets.

The RO also indicated that CK was not considered standard treatment and that it had not been around long enough for data to be available regarding long-term outcomes. He didn’t have anything against it, but said that there’s simply not enough information out there yet. Like I said earlier, I’m getting a referral and will see the CK doctor for a discussion in a few days.

To answer MTIVVC’s question below, my wife has always said that if she had a cancer growing inside her that she’d want it cut out. (But, cancer has always been on her mind, she's incredibly healthy, but even the thought of cancer freaks her out.) Yes, the “growing” part is a concern, but ED, incontinence and bowel issues for who-knows-how-long isn’t something that I look forward to. Again, I’m looking at both quality of life and survival somewhat equally.

And thanks to RCH with the great information on TNM Staging for Prostate, it does appear that since the tumor could not be felt during DRE or seen with diagnostic imaging that T1c is the correct stage

Decision, decisions……

Swingshiftworker
Posts: 649
Joined: Mar 2010

Your RO is correct that CK is not considered a standard treatment BUT s/he's wrong that there's not enough data available to make a "long term" decision about whether to use it or not. There's not a lot of "long term" data but that doesn't mean you can't make a decision based on the shorter (5 yr) data which is available.

Here's a link to a paper which summarizes the results of the available studies on the effectiveness of CK (as of Oct 2010):

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

This paper gives a very good assessment of the effectiveness of CK in treating early stage PCa, which is as good as any other form of treatment (surgery or radiation) w/o any significant side effects.

You should read it closely and bring it along w/you to discuss it w/the CK specialist that you are planning to meet.

Good luck!

S103462
Posts: 8
Joined: May 2012

Thanks for all the information.

That article mentions “…the need for accuracy when delivering very high daily doses using SBRT is essential.” The radiology oncologist (RO) I saw yesterday indicated that the 5 CK treatments are very high radiation dosages and that if anything goes wrong at those high levels, it goes very, very wrong; and that the 39 treatments of IMRT was not as high dose (but, many more treatments). He also said that both IMRT and CK track for prostate motion and adjust for it. (Again, I was prompting him about all possible scenarios. Maybe too much information is not necessarily better?)

Anyway, great reading material about CK. It’ll give me a few more questions to ask the CK doctor when I see him next.

The various blogs I’ve read related to prostate cancer as well as comments from my urologist and the RO mention that once treatment (whatever type) is done, that my outlook is good – perhaps 15+ years. That doesn’t sound very good – since I’m 56 right now – I was hoping for way more than 71 years old. (But, we’re only promised three-score and 10, right?) Is that simply them being conservative, is that all the data supports, or is that really all this buys me?

Again, thanks.

Swingshiftworker
Posts: 649
Joined: Mar 2010

You're welcome for the info on CK.

CK is based on a high series of dosages and designed to emulate the delivery of radiation via HDR BT (high does rate brachytherapy)

http://www.cyberknife.com/uploadedFiles/For_Your_Doctor/500345%20B%20HDR%20Whitepaper.pdf

and the precision needed to properly control the delivery is built into the technology.

CK is, in fact, currently offers the MOST precise method of delivering radiation to the treatment site. SUB millimeter accuracy is claimed -- which beats any other method of treatment out there -- and the technology is also able to adjust for both body and ORGAN movement during treatment (which minimizes the possibility of collateral tissue damage to the bladder, rectum and urethra which can result in ED, incontinence and other problems). This level of precision is simply unavailable with any other method of radiation treatment currently out there, including BT (LDR or HDR), IMRT, IGRT or 3DCRT.

When I received my CK treatments, they actually paused the radiation delivery one day because they could "see" a gas bubble moving through my colon which was causing the prostate to move. You really can't get any more precise than that!!!

I have had NO side effects whatsoever following treatment -- NO ED and NO incontinence, nor any other problems (such as rectal bleeding) commonly reported following other radiation treatments. Others here have reported the same good results and even been post-PSA results than I have.

Of course, I'm biased but I think you can rest assured in the precision of radiation delivery offered by CK.

As for the long term expectations for treatment, there haven't been many studies beyond 10-15 years for anything, except perhaps surgery. Things are changing rapidly in the treatment of cancer and you really can't wait until the "long term" data is in. All you can do is make the best assessment of the currently available technologies and decide which offers you to best chance of a cure NOW (not later) because you have PCa NOW.

I chose CK because the 5 year data (and anecdotal information) available convinced me that it offered me as good a chance of surviving the cancer as any other method of treatment currently available (including surgery) without the significant risk of ED and incontinence that commonly accompanies surgery and the possible risk of ED, incontinence and collateral tissue damage also associated w/LDR BT (low dose rate brachytherapy). Surgery and LDR BT were the only other choices available to me at the time.

I chose CK because it offered me that same probability of a "cure" while also offering me the greatest probability of maintaining my quality of life. So far, that choice has proven to be the right one for me.

I hope it works out as well for you!

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

S,

Swing is giving you some great information. I too had CK two years ago and have had no side effects at all and PSA continues to drop.

The radiation warnings are true for any type of radiation. If they screw it up, you're screwed. Just like if the surgeon sneezes in the middle of doing your nerve sparing you're not ever going to get laid again.

All of these treatments have inherent risk. But you have to keep in in perspective. You could note that if the airplane engines quit at 30,000 feet you have a big problem but most of us keep on flying anyway.

I follow CK papers, forums, and blogs pretty closely and visit with my radiation specialist every six months. I have never heard of a CK case going bad as you describe.

The radiation is delivered via a linear accelerator on a robotic arm which is controlled by a computer program. There is continual imaging of the prostate so that the arm can adjust to prostate movement in real time as Swing noted. If the prostate moves outside certain parameters the machine shuts down until movement has stabilized. I also had the radiology staff brief me on procedures and back up plans for a power outage, earthquake, and other things so that I understood the built in safeguards. I also had them show me the daily maintenance they perform each day to verify the machine is operating properly.

The radiation plan also has checks and balances in that the dosimetrist, radiologist, and physicist, on the team double check the others work. They also run a modeling and simulation routine based on the 3-D imaging you have to verify the pattern what is supposed to be.

CK does use a higher dose of radiation. There is a major advantage to that and it has to do with the alpha/beta ratio of prostate cancer and its vulnerability to higher dosage rates. The precise tracking system is an evolution of technology over several years that allows SBRT to be used on an organ like the prostate that moves around.

If you consult with a CK center, ask them to show you how the build a radiation plan, and how the system works.

Good luck to you.

K

S103462
Posts: 8
Joined: May 2012

Thanks for all the information.

That article mentions “…the need for accuracy when delivering very high daily doses using SBRT is essential.” The radiology oncologist (RO) I saw yesterday indicated that the 5 CK treatments are very high radiation dosages and that if anything goes wrong at those high levels, it goes very, very wrong; and that the 39 treatments of IMRT was not as high dose (but, many more treatments). He also said that both IMRT and CK track for prostate motion and adjust for it. (Again, I was prompting him about all possible scenarios. Maybe too much information is not necessarily better?)

Anyway, great reading material about CK. It’ll give me a few more questions to ask the CK doctor when I see him next.

The various blogs I’ve read related to prostate cancer as well as comments from my urologist and the RO mention that once treatment (whatever type) is done, that my outlook is good – perhaps 15+ years. That doesn’t sound very good – since I’m 56 right now – I was hoping for way more than 71 years old. (But, we’re only promised three-score and 10, right?) Is that simply them being conservative, is that all the data supports, or is that really all this buys me?

Again, thanks.

mrspjd
Posts: 693
Joined: Apr 2010

S1,

Welcome to the PCa forum. I admire the independent research you’re doing and the knowledge and level of questions you bring to this forum so soon after your PCa diagnosis. You seem to have a good understanding of the many complex issues surrounding PCa. Kudos to you for that.

There is published data to support the information that your radiation oncologist (RO) gave you on June 6th re CK (CyberKnife is the manufacturer’s name for one brand of SBRT delivery technology). Last year, the respected American Society for Radiation Oncology (ASTRO) released a summary paper titled “Quality and Safety Considerations in Stereotactic Radiosurgery (SRS) and Stereotactic Body Radiation (SBRT) Therapy.” The document was commissioned by ASTRO and approved by their Board of Directors to address patient safety. ASTRO’s executive summary paper states: “Given that very high-dose fractions of radiation are delivered, the margin of error for SRS and SBRT is significantly smaller than that of conventional radiotherapy and therefore special attention and diligence is required. A small error in target localization for any 1 fraction risks under treatment of portions of the tumor by 20% or more, and inadvertent over dosage of adjacent normal tissues could escalate the risk of serious injury to a much greater degree than an equivalent treatment error in a course of radiotherapy where a substantially lower dose per fraction is used [IG/IMRT].” Of course, as with any cancer treatment, the skill & expertise of the treating medical doctor/team are critical. I’ve previously posted about this. If you’d like more info, please LMK.

I don’t know if there is any study data to indicate that PCa in African-American populations is or should be TREATED more aggressively (or differently) than in Caucasian populations—tx decisions are personal and largely dependent on the patient and cancer risk level and clinical Tumor staging. However, according to data from the CDC and Johns Hopkins: “African American men are both more likely to be diagnosed with prostate cancer and to die from prostate cancer than are white men, although the reasons for this are not clear. African-American men have considerably higher incidence rates (234.6 cases per 100,000 African-American men in 2003-2007) than white men (150.4 cases per 100,000 white men in 2003-2007). In the period from 2003 to 2007, mortality rates were 22.8 cases per 100,000 white men, and 54.2 cases per 100,000 African-American men. Some studies found that even when income and education are controlled for, African-Americans have much higher rates than whites. Further studies are examining the impact of a wide variety of potential risk factors, including dietary and other lifestyle differences, occupational exposures, and hormonal and genetic differences.” IMHO, you are wise to be taking a very proactive approach to learning as much as possible about your dx.

Although you indicated there is no history of PCa in your family, you mentioned a history of uterine and ovarian cancer for female family members. Prostate, breast & ovarian cancers are all hormone sensitive cancers. I do not wish to alarm you, but it’s important for you to know that a recent study from the UK indicated that men who carry the mutated BRCA1 gene have a four times greater chance of developing prostate cancer than other males. The mutated BRCA1 is found in people with a family history of not only breast cancer, but ovarian cancer as well. MEN with the mutated BRCA1 gene are also more susceptible to the very aggressive form of prostate cancer. Only genetic testing followed by genetic counseling can determine if you or other family members are carriers of this gene. I am not a medical doctor, so please check with a knowledgeable PCa oncologist about this. Also, as others have stated, I strongly recommend that you obtain a 2nd opinion analysis of your biopsy core samples from a pathology lab that specializes in reviewing PCa specimens, such as Johns-Hopkins, prior to making any tx decisions. The info in the 2nd opinion path lab report will assist you in better evaluating your tx options and may even be helpful in determining if add’l diagnostic testing may be indicated. It did for my husband.

With your early dx, I believe your chances for a successful treatment outcome are excellent. I have no doubt that your continuing research, thoughtful questions and multiple medical specialty consults will lead you to a tx decision that will be right for you. Good luck and best wishes to you and your wife.

mrs pjd
wife of a T3 PCa Survivor

S103462
Posts: 8
Joined: May 2012

Spent time yesterday speaking with the doctor at the local CyberKnife (CK) facility. Talked at length about my diagnosis, treatment, the CK process, outcomes, side-effects, short- and long-term expectations, his experience, and results that they've seen. We talked about my concerns, how I heard about CK, why I was considering it -- a real thorough discussion from all angles.

He did recommend that I get a 2nd opinion of the biopsy pathology, and recommended Johns Hopkins, and recommended the same name (Epstein) that you and others have mentioned.

He did let me know that my insurance carrier (Anthem) would not cover the CK treatment -- that they would cover everything else -- scans, MRI, whatever -- all the way up to and after the CK treatment, but not the CK itself. He indicated that the cost of the CK would be somewhere between $8K - $10K. My wife says to not let that impact the decision -- if it will provide the outcome that I'm looking for, then go for it. We'll see.

Swingshiftworker
Posts: 649
Joined: Mar 2010

If they are actually offering CK treatment for only $10K, that's an incredible deal!!!

Are you sure that for all 4-5 treatments or just 1? Reason I ask is that I was quoted $70k for insurance billed and $60K for self-pay for 4 CK treatments) by UCSF where I received CK. Fortunately, Blue Shield covered it and I didn't have to pay anything.

If you're only talking $10K, I agree w/your wife that you should not let the cost affect your decision about whether to go w/CK or not. However, if it's closer to what I was quoted, you'll obviously have to take your finances into account.

Let us know what you finally decide. Good luck!

mrspjd
Posts: 693
Joined: Apr 2010

S1

Once you obtain the 2nd opinion path lab report on your biopsy samples and copies of all your recent medical tests, records and reports, I would encourage you to consider scheduling a consult with an oncologist who specializes in PCa.  S/he may be able to provide an independent assessment of your case after reviewing your medical records/history and risk factors (such as family history of hormone sensitive cancer, etc) & assist you in evaluating tx options with attention to personal lifestyle & QoL priorities. 

In the meantime, you may also wish to consider attending a well established face to face PCa networking group mtg in your area that welcomes wives & SO's.   My husband & I found these resources very helpful during the "due diligence" portion of our journey (and still do 2 1/2 yrs later).   Keep researching and asking questions!

hunter49
Posts: 204
Joined: Oct 2011

You are not a T1c if it is on both sides. That came from my friend who is at Hopkins. He advised me the same as he did not feel my tumor but after my RP it was in both lobes and no matter what I am clinically a T2c. Even though you cannot feel the tumor it is there. When doing a DRE you only feel one part of the prostate. Given the fact there were 5 out of 10 cores on both sides of the prostate there is a good chance if you removed the prostate your Gleason score would be a 7. I agree you have many choices but given your age which is not too much older than me I went the surgical route. ED will occur with surgery no matter what for a period of time. Sometimes it is worse than others. Like cancer no two patients respond the same. I am getting better every day and will probably be close to a 100% by end of summer. It makes no sense that your RO says surgery is more dificult if on both sides unless the surgeon feels he has to cut wide hence avoiding nerve sparing. That is the MO at Sloan. Everyone I met who had surgery there had issues regardles of the G score and age. They are cancer hospital and want a high success rate which is more likely to make wide cuts. Get opinions from experienced surgeons, one who did close to a thousand surgeries. CK has promise but with true low grade cancer. In your case it is really not a low grade. This is not my opinion but 2 doctors I asked about your case.

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