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Recently diagnosed

Jacquet
Posts: 26
Joined: Jan 2013

I was recently diagnosed with PC. Gleason score of 6 (one core positive), PSA 18. Had a bone scan and MRIboth came back excellent. My prostate is enlaged and accordig to the doctor hard in one area and my doctor believes that my prostate sufferes from a cronic infection (the hardness) and that may be contributing somewhat to the higher PSA. I have not discused any options with my doctor, that will come on the 20th of Feb. My doctor says not to panic, I'm not going anywhere in the near future. The doctor expressed to me that she is hopeful and optimistic that it was caught early enough and survival looks great.

 

So yes i will take imediate and forcegul action, but I'm looking for some others to chime in. I realize that we are not all doctors, but actual survivors with similar conditions.

 

What say yee?

 

J

Jacquet
Posts: 26
Joined: Jan 2013

The gleason was one in 12 cores

hopeful and opt...
Posts: 1505
Joined: Apr 2009

To avoid an active treatment option where there can be side effects that can be major, "active surveillance with delayed treatment" is an option.

Various institutions have criterias; I believe for example Johns Hopkins criteria for low, low risk prostate cancer, that is indolent cancer, not likely to spread is less than 2 cores, less that 50percent involement in each, (that is less thatn 50 percent of the core that is cancerous, a psa of less than 10 and a ratio of less than 0.15 psa/prostte size.

There are various tests to confirm this ; MRI with a 3.0 magnet to show if there is extracapsular extension.

There are drugs such as cipro that can be given to see if any potential infection will clear and the PSA number will fall.

I suggest that you speak with an expert of active surveillance.

Oh by the way get a second opiniion on your biopsy slides by a world class pathologist since determining Gleason is subjective. This way you will not be over or under treated. In some cases those who have initially been diagnosed with prostate cancer actually do not have the disease

 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 with LRPC, is similar to initally treated patients , so the treatment decisions will be very similar. I've been doing Active Surveilance for the past four years . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment if necessary, and still make the same  active treatment decision that   I initially would have choosen.

Jacquet
Posts: 26
Joined: Jan 2013

I'm retired military so all of this is coming from a military doctor, but I think she is a good one. I wil seek a second opinion as I have some contacts up at JH where my wifes is a patient at the Wilmer eye clinic. In the meantime I have an appointment with the doctor on the 21st of Feb to go over some treatment options. She did mentione taht Active Surveiilance is an option.

 

Thanks for the information. I really think this is one of the best places for information that I have come across.

hopeful and opt...
Posts: 1505
Joined: Apr 2009

a Dr. Carter is in charge of the Active Surveillance program at Johns Hopkins. I think that I read that they also have a panel that evaluates new patients and treatment options. The pathology department there is one of the top, if not the top in the world.

Also suggest that you continue your research, read , research, research....books, go to local support groups......there are two national organizations that you can goggle for a local group near you......"us too" and "man to man"

Please keep us in the loop.

Jacquet
Posts: 26
Joined: Jan 2013

First, I want to thank everyone on this site for their support and information, it has really hepled me understand and loose my fear. The latest from my doctor:

The one core out og 12 that came back positive is 10% of the total core volume. Up until then, the other biopsies (4 in the past 5 years) all came back negative.

PSA is 23.88

I do have a lot of benign tissue with atrophy

Also have a fair amount of inflamation

last DRE revealed that there is some calcification as well, but there do not appear to be any "lumps" that would indicate tumor.

Bone scan came back perfect as well as the abdominal MRI.

I have had 5 DRE's since first being diagnosed and all the doctors agree that it is highly likely a good part of the high PSA is the result of inflamation due to infection. My doctor took the time to sit down with me and my wife and explain that the gleason score of 6 (3+3)  is like golf, the lower the score the better. She explained thet there are other lower scores, but that in her 20+ years she has never seen one. So she has me on antibiotics twice a day for 4 weeks and then a PSA  and DRE within 5 days of finishing the mediation. She explained that if my PSA drops at all then that is a good sign and it it gets below 10 that is really good news, and they will determine if more antibiotics are needed. A doctor from each of the disciplines discussed Surgery, beam radiation, and seeds as courses of action. So all said and done, my doctor advised to wait and see if the antibiotics have an impact, and then decide on a treatment option. She also advised taht is my PSA dropped really low dow below 4, that I could be in a monitoring mode with DRE every 60 days, biopsy at least 2 time a year.

 

So I think that my doctor is giving me good advice and I trust her. Glad to have access to such great care. I do value any thoughts and information from those who have been down the road, bad and good.

 

Thanks All

 

Jacquet

PS: sorry for the double posting, not quite got the hang of it yet

 

Jacquet
Posts: 26
Joined: Jan 2013

First, I want to thank everyone on this site for their support and information, it has really hepled me understand and loose my fear. The latest from my doctor:

The one core out og 12 that came back positive is 10% of the total core volume. Up until then, the other biopsies (4 in the past 5 years) all came back negative.

PSA is 23.88

I do have a lot of benign tissue with atrophy

Also have a fair amount of inflamation

last DRE revealed that there is some calcification as well, but there do not appear to be any "lumps" that would indicate tumor.

Bone scan came back perfect as well as the abdominal MRI.

I have had 5 DRE's since first being diagnosed and all the doctors agree that it is highly likely a good part of the high PSA is the result of inflamation due to infection. My doctor took the time to sit down with me and my wife and explain that the gleason score of 6 (3+3)  is like golf, the lower the score the better. She explained thet there are other lower scores, but that in her 20+ years she has never seen one. So she has me on antibiotics twice a day for 4 weeks and then a PSA  and DRE within 5 days of finishing the mediation. She explained that if my PSA drops at all then that is a good sign and it it gets below 10 that is really good news, and they will determine if more antibiotics are needed. A doctor from each of the disciplines discussed Surgery, beam radiation, and seeds as courses of action. So all said and done, my doctor advised to wait and see if the antibiotics have an impact, and then decide on a treatment option. She also advised taht is my PSA dropped really low dow below 4, that I could be in a monitoring mode with DRE every 60 days, biopsy at least 2 time a year.

 

So I think that my doctor is giving me good advice and I trust her. Glad to have access to such great care. I do value any thoughts and information from those who have been down the road, bad and good.

 

Thanks All

 

Jacquet

 

 

hopeful and opt...
Posts: 1505
Joined: Apr 2009

I think that the anitbiotics are a good idea; hopefully the psa will decline...wait and see what happens.

If you are in a monitoring mode, "active surveillance with delayed treatment" as I am, which is fairly likely, especially if the PSA declines under 10, a biopsy twice a year is too often...I think that you meant to say a PSA test twice a year.

In the protocol that I have, I had a biopsy with a doctor. The doctor that I see after the initial diagnosis, did a biopsy one year after, and then another one after a year...the one that I have scheduled in June 2013 is 2 years after. Please feel free to click my name to see what I have been doing , the results of my tests, and additional information about an"active surveillance" protocol that you can read..

 

I am not sure what you mean by an adominal MRI...please detail

Anyway, so far so good.

 

hopeful and opt...
Posts: 1505
Joined: Apr 2009

.

hopeful and opt...
Posts: 1505
Joined: Apr 2009

.

VascodaGama's picture
VascodaGama
Posts: 1754
Joined: Nov 2010

Jacquet

Your diagnosis so far refers to a low risk type of cancer. Gleason pattern of 3 (Gs 6) and only one out of twelve needles positive, and negative image studies. AS would be recommended by most of the doctors weren’t there a high PSA.

Your doctor is recommending well for you to wait and check for the results from the anti-inflammatory protocol. In any case the high PSA could be due to other factors not just due to inflammation or cancer. Sex on the night before drawing blood or riding a bike or even hard stool could cause the PSA to spike from 18 to 23.

The revelation of existing calcification at the prostate should be confirmed in the biopsy samples. In fact the biopsy should have been done including and aiming at those spots felt in the DRE.

Should your treatment to control inflammation not drive the PSA down, you could wait for the results of still another periodical biopsy aiming at other inner areas of the prostate, and get more specific types of image studies with better contrast agents and higher image resolutions.

Any radical approach (prostatectomy or radiation) can arm you and deprive you of quality of living. Low aggressive cancers may never bother or be prejudice to normal living. One may well die from other causes.

Can you share more details of the pathologist report?

 

Take your time and do things coordinately. Cancer does not spread overnight.

Wishing you luck in your journey.

VGama  Wink

Jacquet
Posts: 26
Joined: Jan 2013

VGama,

 

Without typing a bunch of information in:

2 came back with Acute Inflamation no malignancy,

2 came back with atrophy no malignancy,

1 came back positive with a core %10,

7 were normal

 

Jacquet

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VascodaGama
Posts: 1754
Joined: Nov 2010

Jacket

Thanks for sharing the details.

Is there any other info regarding the type of cancerous cells? Have they identified only adenocarcinoma?

The typical prostate cancer is formed at the outer layers of the prostate which makes it critical to check for hard “bumps”.
Not to worry you but, I have read cases where atrophy was connected to cancer that produces low levels of PSA notwithstanding of being aggressive.
Atrophy could indicate a breakdown of tissues, involving cellular apoptosis. This is considered in some cases as a cause of low supply of androgens to cells metabolism. In other words, your prostatic cells could have the characteristics and behave as “self-sufficient”, producing its own androgens to survive.

This apotheosis in your diagnosis with high PSA could well lead to think that the main cause is the acute inflammation; however, since you have been diagnosed with the bandit, now you will have to be vigilant and follow your status with constant periodical test, but any future biopsy would be done only to check for cancer volume (positive cancer found in other areas of the prostate) or to look for higher aggressivity (worse Gleason patterns). I think that such biopsy would be required if you are “set” to follow AS (no radical treatment). Otherwise, I would recommend you to request for other means of testing the progress.

Due to “atrophy”, I would recommend you to get a testosterone test. I would also recommend you to check your bone health (dexa scan). Free PSA to get the real antigen level, and other markers to follow progress more closely; such as PAP (Alkaline Phosphatase). Also track liver enzymes ALT, AST and as well as BUN and the creatinine.

In modern monitoring of cancer doctors are recommending to get a DNA profile to more precisely identify the medicines that will work or not in your system. I would recommend you to do it if affordable to you. It will be the way to control cancer with the newer drugs, existent now or in development, that will revolutionize the way we/they treat our prostate cancer cases.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1069086/

http://www.urotoday.com/Treatment-of-mCRPC/successful-treatment-of-advanced-metastatic-prostate-cancer-following-chemotherapy-based-on-molecular-profiling-beyond-the-abstract-by-charles-e-myers-md.html?mkt_tok=3RkMMJWWfF9wsRonv6zPZKXonjHpfsX86eklULHr08Yy0EZ5VunJEUWy2YIJSdQhcOuuEwcWGog80B5XCfSUaIVG9edIBg%3D%3D

 

I wish you good results from your anti-inflammatory treatment.

Best wishes.

VGama  Cool

Jacquet
Posts: 26
Joined: Jan 2013

VGama,

Thanks for all the insight. I will definately talk about these other ideas with mu doctor when I go back for my PSA test in about 2 weeks. I'm retired military and work for the government so procedures and cost are not usually any problem. So far, the antibiotics seem to at least be maing urination a little better, could be due to reduced swelling. I also seem to have more energy lately. You mentioned the things that can make PSA go up, and I seem to remember that just a day or do before the last test I was out in the yard chopping wood to relieve some stress.

Might be why it spiked from 18 to 22/23

 

Jacquet

Jacquet
Posts: 26
Joined: Jan 2013

So I did the month long treatment withhigh dose cipro and went in for a PSA check It dropped from about 22 down to 20, but my Dr. thinks taht is not enough so she is recomending DaVinci. She specializes in theprocess and has performed arount 80 of the procedures and she is pretty conficant. I'm ok with that. I asked her about cyberknife and she said it was good but that the military does not do that.

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VascodaGama
Posts: 1754
Joined: Nov 2010

Jacket

I am sorry for the outcome. The PSA should be much lower after the antibiotic treatment.

Not to stress something here but some guys have reported about their experience in treating inflammation with different medicines because some bacteria does not “clear” as expected. You could still try to get a urine culture test if you think it would give you peace of mind.

Mean while you can do your homework researching about treatments. You could get more specific image studies with higher resolution equipment (3-tesla MRI, choline contrast) to verify for any spread. Low Gleason cancer with High PSAs are usually related to micrometastases cases, to which radicals are limited. These are done with defined targets otherwise they cannot assure cure.

Yours and mine cases are different but to inform you; I also was a low Gs (2+3=5) with high PSA=22.4 and negative traditional image studies, choose prostatectomy but soon after recurrence indicated that I had micrometastases. Later I had Salvage Radiation but that did not cure me too. Specialists indicated again that I was confronting micrometastases. I now believe that what was missing in my initial diagnosis was a proper image study, but at the time (2000) they were not available. The image techniques  are now more precise in detecting small colonies of cancer. I would suggest that you explore this "field" and try to get the best diagnosis possible, and affordable to you.

You may think that I am proposing you to do nothing but such is not the case. I think you should move forwards but coordenately. Do not jump into anything without fully checking for the pros and cons on a therapy. All treatments for PCa got side effects and some may not be acceptable to you.
Typically doctors suggest their “trade” as the best approach (your present doctor  Yell ) but typically the outcome suggest the contrary. Remmenber that she will request you, before the operation, to sign an agreement relieving her/him of any wrong doings or outcomes. You will acknowledge that you know what you are doing. Unfortunately this happens everywhere, even in the military.

Accordingly you need to read a lot and discuss about the disease, its treatments and consequences. Many guys treat indolent cancer that may not cause a problem during their life time, and many get so scary that just want to get rid of it, no matter the consequences.
Many of those become more involved with the problem of confronting the side effects than the causes of the cancer.

I think that you got enough time to educate in all type of treatments that best would fit you and your family. I also recommend you to look for modern facilities/hospitals and experienced specialists with many years on the "trade". You also should get several second opinions from specialists in each field (out of the military compound).

You will need a list of questions when confronting the doctors. Here are some ideas to prepare your own list;

http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

A compendium on Prostate cancer and care;

http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

 

I wish you luck in your journey.

VGama  Wink

Jacquet
Posts: 26
Joined: Jan 2013

Thanks VGama,

 

My post got cut short. I'm not concerned that my Dr. is pushing one or the other. She is telling me taht the only option taht they offer at the military hospital is then DaVinchi. In the mean time she has scheduled me to get the MRI procedure you mentioned. It will be done at Walter Reed. She wants to make sure that if there are micro tumors.

I'll check out the links you provided.

 

Jacquet

hopeful and opt...
Posts: 1505
Joined: Apr 2009
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Kongo
Posts: 1167
Joined: Mar 2010

Your doctor has given you incorrect information regarding CyberKnife, which in my lay opinion, is an excellent choice for treating your low risk cancer.  I am also retired military and Tricare covered the complete cost of my CyberKnife procedure in 2010.  They also paid for the six consulting sessions I had with various experts in the field and I hope you avail yourself of this great benefit by seeking the advice of other specialists.

By the way, 80 DaVinci procedures does not make an expert.  Not by a long shot.  Most experts agree that a urologist should have performed several hundred DaVinci procedures.

I appreciate that you like your urologist but you need to seek other expert opinions.  If you do proceed with surgery, make sure you understand the considerable risks to your quality of life.  (This goes for any procedure)

K

Jacquet
Posts: 26
Joined: Jan 2013

Kongo,

Yes I can use my TriCare if i want another procedure. My Dr. has sugegsted that I explore it and that may be the right choice. At the military hospital taht I'm being seen at, they only have DaVinci. So my options are still open. She is dsending me to Walter Reed for an MRI that includes the induction coil in the colon to get a better view and check for Micro's as Dgama has suggested could be.

 

I have a friend who also had the Cyber Knife about 5 years ago and so far he has had no further issues, so I will be checking into it and I'll weigh the options. I really appreciate the informatio. If you would, could I askyou to share more information? Not personal but jdut things like any effects, recovery time, etc.  

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Kongo
Posts: 1167
Joined: Mar 2010

It seems like you are in the DC area.  I suggest that you investigate CK at Georgetown Medical Center that has an advanced CyberKnife center.

In my own case, I've posted frequently about my experiences with Cyberknife and I would urge you to check them out on this forum.  I have had no issues at all with Cyberknife.  Easy procedure.  No ill effects afterward but I would encourage you to visit a CyberKnife doctor directly and not take advice from strangers on the internet.

Good luck to you.

 

K

yankeefan
Posts: 69
Joined: Mar 2013

If you are in the DC area you might consider robotic treatment at the washington hospital center (whc). I've heard good things about the robotic surgeon there. personally, I wouldn't go with a surgeon who has only done 80 prostatectomies, robotic or other wise. I believe the robotic surgeon at whc is Johnathan Wong. You should also consider going to Johns Hopkins in Baltimore...which is where I chose to have my surgery just last month. They have surgeons who can do either approach...robotic or open and who have done hundreds/thousands of them. The key factor in how well you do with prostate surgery is the skill of the surgeon. If you go to Hopkins suggest you talk to either Bal Carter or Alan Partin. Both of them are experts and have done many many of these operations. If you have an enlarged prostate chances are you suffer from urinary issues just associated with that.....you may actually see improvement, I have, in urinary functioning once that large prostate is removed. best of luck...

Jacquet
Posts: 26
Joined: Jan 2013

I have an MRI with high power magnent (i think that's right) on the 23. My doctor says taht this will show if there are any tumors too small to see with a regular MRI. All my other test have come back good (bone and regular MRI). If this MRI comes back clean I think I'll go ahead with the surgery and be done with it. If I was older I would use active survellance but since I'm 59 not 79 I need to take action.

 

My doctor, while recommending robotic surgery, also said to check into cyber knife. The military hopsital at Ft. Belvior does not do this proedure, so I'm checking around. Thanks for the good tips on JH. My wife gets regular treatment there for her eye lids and they are a great hospital. If it works out  have no problem driving 1 hour to get there.

 

 

hopeful and opt...
Posts: 1505
Joined: Apr 2009

If you plan to go for Johns Hopkins for treatment, I suggest that you get the MRI with a high power magnet at that facility. Many facilities like to do their own diagnostic testing, and do not trust tests from other facilities.

Also if you go to JH I would discuss treatment options to include Active Surveillance...they are the experts...

Jacquet
Posts: 26
Joined: Jan 2013

Ok, so I went to Walter Reed and had the 3 Tesla, chlorine MRI, which found the cancer to be contained in the capsule of the prostrate, nothing outside. What they also determined was that the tumor is close to the urinary tract and to do any surgery would almost certainly result in loss of control, meaning I would have to wear pads/or use a bag, and I would definately loose any of the sexual function I still have. Not much but it still functions.

 

So the doctor recommended that I get beam radiation. Bieng that surgery is too risky, the beam can dover the whole tumor without sugical damage to the urinary tract and might even improve my functions. The big draw back with beam radiation is that it's 8 weeks of daily doses, but then again that's a small price to pay. The doctor also said that the beam radiation would give me at least a 90+% sucess rate and that I would likely expire from heart issues or some other malady. If the cancer did come back it could be long term management. By that time I'll be 70+

So my choices are the 8 week radiation or possibly cyber knife. I'll be able to make a better informed decision after I talk to my radiologist.

VascodaGama's picture
VascodaGama
Posts: 1754
Joined: Nov 2010

Jacquet

You are doing it right. Get informed and consult several specialists before committing. Remember that outcomes are better if the team diagnosing and treating you are high qualified physicians in PCa

Prepare your own list of question and do not care if they seam odd to you.

Here are some ideas to your list;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

Best wishes.

VG

 

Kay23
Posts: 8
Joined: May 2013

Hi everyone, 

Never thought I would be saying this but sadly my daddy has been Dx with APC (advanced prostate cancer)  We have only just found out and one can imagine,  we are all sscrambling for information and hope that we are approaching this the right way - if there is a right way   We are absolutely besides ourselves.  I myself have only just had the courage to read all about my daddy's cndition so at present have little information.  What I do know is that my daddy's Gleason count was 8,2 in Feb,  it is now down to 0.04  he is currently on HT treatment - sadly the monster has travelled to his bones.  I am really not very familiar with all the terms and am taking it upon myself to find as much info as I can and I am looking for hope.

I live in Europe my daddy in Africa - so its really really hard on us all.

My daddy is 73years old,  usually very fit and healthy

Gleason count was 8,2 down to 0.04 30 May 2013

Bone scan Monday

 

hopeful and opt...
Posts: 1505
Joined: Apr 2009

So we can best help you and continue the thread for Jaquet, please repost your post , starting a new thread. The way to  this is to click, Prostate Cancer on the top of this page, then click , start a new topic under prostate cancer on the upper left side of the next page. .....Thanks

Kay23
Posts: 8
Joined: May 2013

I will do - thank you

Jacquet
Posts: 26
Joined: Jan 2013

VG,

 

I have some updates and want an opinion. I had the 3 Tesla test and the initial results looked like it was contained in the capsule. I went to a radialogy appointment today and the radiologist gave me more information. She and a board of oncologist reviewed the 3Tesla MRI and saw an area on the surface of the capsile that indicated that it was very close to getting out becasue they could see deformities on the surface of the capsule where the tumor is located. She didnt say that it had broken out, but that it was pretty close if anthing, so they are going to start me immediately on hormones to halt the growth, wait about 3-4 weeks, then do the aiming implants and start the bean radiation shortly after that. So now it's early June and they are looking at late July to start the radiation.

I was originally catagorized as a low to moderate risk, but with the new MRI and my PSA still above 20, they reclassified me as high risk. The Dr said that my earlier gleason score of 6 was low but after reviewing the MRI and the 22 PSA she said that the biopsy likely got a little sample but missed the most, so thats why a biopsy was a general indicater, not a highly reliable diagnostic tool and that my actuall gleason score may be a 7 or 8. Makes sense to me.

She gave me a copy of my chart from the NCCN (National Comprehensive Cancer Network) and it reads:    T3a, PSA>20. So the treatment regimen is hormone therapy, beam radiation for 8 weeks to encompass the entire area, then hormone maintainance for about 2 years.

I asked a lot of questions about the beam radiation and since it is close to or almost out of the capsule it was best to use the wider bean instead of the more focused cyber knife type treatment to ensure it was covered. She alsosaid that there was no indications that it had spread to any lymph areas. She did encourage me to get information on the cyber knife and make a descision and that she personally thought cyber knife type treatment is good and works. The issue is that I go to a military hospital (i'm retired) and they dont do the cyber knife yet, just the beam therapy. She said I could possibly get a consult to go to a civilian facility and get the cyber knife. So she didnt knock it, said she thought it was good and good for some, but if I had a flexible schedule and didnt need to get it all done in a short period of time, the beam was the way to go and they can track it throught the process instead ok youre done come see us if anything happens.

Of course I asked the obvious question, what is my prognosis, what does my life span look like. She reassured me that starting the hormone treatment (this week or Monday), the beam radiation, and then the maintenance hormone after, I should do just fine and realisitcally could expect another 20+ years, which works for me!

 

V/R

 

jacquet

 

 

 

VascodaGama's picture
VascodaGama
Posts: 1754
Joined: Nov 2010

Jacquet

I am glad to read about your detailed explanation regarding the steps you are taking to diagnose your status. Your action will lead you to a better decision on a treatment, in case it would be required.
The MRI findings confirm the previously found positive DRE. I am curious to know if the biopsy did include one core aiming to the bump area. Can you describe here the contents of the pathologist report, which areas and lobes were sampled?

As you comment, a biopsy covers only a fraction of the prostate so that the procedure is not complete to analyse and attribute a proper clinical stage of a patient but it is the only way (at the present) to diagnose cancer. It could also “catch” a breaking spot in the outer shell of the prostate indicating extra capsular extensions.
This is what your doctor is commenting and by her experience she is declaring you as a T3a patient. The Gleason score, though, has not increased from 6 to 8. Such could be only declared by a pathologist if an addition core is taken and confirmed. Probably she meant that you are at higher risk for metastases similarly to a higher Gleason score patient. The high PSA may also be due to a voluminous tumour from a lone colony or from micro many colonies.
Again, the biopsy did not confirm that (only one core positive) and so one should guess and base his reasoning on past experiences.

NCCN Guidelines is exactly based on successes and gives preferences to the high rates. It takes into account the age and health condition of the patient, but it does not cover conditions regarding the side effects or quality of life.

The treatment proposed by your doctor refers to the combi HT+RT which were found to have higher successful rates in long periods of biochemical free (such include cases of cure).
The procedure is recommended to cases of extra capsular extension requiring a wider field of radiation (localized lymph nodes, iliac and bladder neck) done in several fractions (typical IMRT). The neoadjuvant hormonal portion will sensitise the androgen receptors of the cancerous cells so that the latter radiation action will “work” better. The period of the adjuvant HT portion in the treatment is controversial. Many doctors have found no benefit in longer periods of hormonal administration. I myself are biased and would not follow a long period of adjuvant HT. The fact is that the radiation is the “portion” that can cure and that would be only ascertained at a “hormonal free environment”. Moreover, hypogonadism is not a “healthy” status. Our body systems need testosterone for proper function.

However, in localized contained cases the radiation field is limited to the prostate gland and the same NCCN Guidelines “offer” other ways of radiation treatment. CyberKnife is a procedure to deliver hyperfractionate radiation which has proved to be more successful when comparing to lower fractionated doses. The treatment is “short” in the number of fraction and in the total Grays administered. IMRT may also deliver higher doses of Grays but the CK system is set (not a novelty) and known to work well for its purposes. Why change it?

Spot radiation can be done by almost all machines and methods. This is not important to treat your case. You need to think about the side effects and risks each treatment entails. HT leads to its own symptoms and RT is dependent on the accuracy of the delivery. The hypogonadism status returns to normalcy once one gives up with the drugs.

Regarding the statistics, both types of radiation present similar rates of success in low to intermediate risk cases. IMRT is preferred for wider field of radiation that requires lower doses of Grays per section. This is usually recommended to high risk advanced patients.

You have been diagnosed by your doctor as intermediate to high risk case. This is a sole opinion and I think it right that you get consultation with other specialists before committing. You would not lose anything if the hormonal treatment starts now and decides on the RT after or even if you start the hormonal later after second opinions and feeling more confident in your judgement.

Do not let the “army financial problem” take the “primer seat” if you can afford it. There are other CK survivors in this forum that have gotten CK under military auspices. Surely there are thousands of patients that did IMRT with success. The team and facilities in charge of the isodose planning and administration makes a big difference in the outcome. I would include your famility in the final decision.

Please note that I am not a doctor. I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

Wishing you the best.

VGama Wink

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Raltrt41
Posts: 16
Joined: Mar 2013

Cyberknife has a patient forum on their website that provides a wealth of info from current patients and comments from several MD prroviders of CK therapy. In addition to biochemical success, it is extremely important to compare various therapies rates of side effect: ED, Urinary, Rectal.....but also look for late onset problems in the same areas caused by different forms of radiation therapy. 

Best of luck,

Bill

Jacquet
Posts: 26
Joined: Jan 2013

VG, All,

 

Recently started the radiation treatment (5 days a week for 8 weeks). So far so good. No side effects that I can tell other than occasional soft stools. also on the hormone therapy with hot flashes but I can live with those. Since I live close to the treatment center I go in early n themorning and then on to work. I have a consultation with my Dr next wednesday where we will discuss any issues.

 

Jacquet

VascodaGama's picture
VascodaGama
Posts: 1754
Joined: Nov 2010

J

I am very pleased to know that you are doing well and managing the situation. Soft stools are common in RT PCa treatments. You may change diets during this period so that you can control better the condition. Just inquire with your doctor about what to eat and search the net. Here is a link;
http://www.cancer.gov/cancertopics/coping/radiation-therapy-and-you/page8

HT typically causes fatigue and a change in mood and that may reflect behaviours less pleasant when among people. You just have to think that those are temporary and accept some changes in your daily life style at home and at work.   Frown

When in consultation with your radiologist, explain in detail all the effects you are experiencing. I had weekly meetings with the physicians and felt a great relieve in knowing about what they have already accomplished and about the scheduled next fields of radiation and their purposes. It is good to have the feeling that we make "part of the team" doing the treatment. It gave me the confidence and trust one need when treating cancer. Cool

Best wishes for a successful outcome.

VG  Wink

Jacquet
Posts: 26
Joined: Jan 2013

VG,

 

Just as you said, I'm experiencing some of the symptoms of the radiation. My doctor gave me some imodium to help control the bowel movements and I'm actually doing OK. A little discomfort from gas once in a while, and a littl bit of like a sunburn in the nether regions, but all in al doing OK. I'm ow half way through the 8 weeks and think I'll mkae it. My Dr says I am doing great, everything is going as planned, and that after the treatment is dons it may take a few weeks to get back to almost normal.

 

Jacquet

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VascodaGama
Posts: 1754
Joined: Nov 2010

Congratulations Jacquet.

I hope that those symptoms disappear and that all goes through smoothly. I used a sort of cream to protect the skin where rays enter. I also felt some irritation when peeing. Medications did the job. Tell everything to the radiologist or the nurse. Do not forget in drinking a lot of water one hour before each section.

Best wishes for continuing success.

VG

 

Jacquet
Posts: 26
Joined: Jan 2013

VG and all,

I finished my radiation treatment 2 weeks ago and all is retunging to normal. No more diarrhea to speak of. On flow max to help for the nightly trips and aI'm down to one or two nightly from 5+ during the treatment. I go back on 8 Nov for my first post PSA check. They did give me one more HT implant and my Dr. indicated that it will likely be the last.

 

So, waiting for the 8th of Nov. Feeling pretty good.

I want to thank each and every one of you for your support, and special thanks to VG. I'll keep all posted on the results!

 

Jacquet

Jacquet
Posts: 26
Joined: Jan 2013

VG and all,

Great news! I finished 9 weeks of radiation and am now on hormone therapy. My first PSA test after allowing for my system to reset after the radiation came back undetectable! I will be on the hormone therapy for about 2 years, but my body has adapted and I feel really great. I want to pass on to all that if radiation therapy is an option, do not be afraid of what you may hear. In my case there was very little reaction to the radiation. A little diarrhea which was easily controlled with Imodium, and a little issue with getting up 3-4 times a night which was addressed with Flomax. There was a little hardening of skin due to slight sunburn from the radiation that has all but gone away. I no longer need the Imodium and the Flomax allows me to make it through the night most nights of the week.I just wanted to pass on my thanks for all of you that provided me with support and knowledge during my treatment. I will check in from time to time with any updates and to provide any encouragement I can.

Thanks to all of you!

 

 

 

I no longer need the Imodium and the Flomax allows me to make it through the night most nights of the week.

 

 

VascodaGama's picture
VascodaGama
Posts: 1754
Joined: Nov 2010

J

Your treatment is not over yet but the improvements are great news. Now you need to wait till the end of the effect from the hormonal portion to get your final result.

Best wishes for continuing improvements and a fantastic outcome.

VG

Jacquet
Posts: 26
Joined: Jan 2013

The only side-effects I'm feeling are from the hormone therapy. I have gained some weight and having pimples on areas of my body. also developing man boobs, moobs, my doctor says that this is all normal for the hormone I'm injected with and at the dosage level. I'll have to look those up. Not to difficult to live with.

 

Laughing

Jacquet
Posts: 26
Joined: Jan 2013

Greetings VAsco,

 

It has beena while since I logged into the site. I need some insight. My initial PSA was negligable after the radiation therapy. Then up to 1.56 for 6 months. I had a PSA run in Oct this year and it was 40.70, and one done just last week taht came out as 9.78. I tend to think that the high ones might be false positives or I may have picked up an infection during the process. I have a check on the 4th Dec and will talk to my doctor then. I continue on the zolodex every 90 days, inserted under my skin and slow release.

 

Any observations or comments are appreciated.

 

Jacquet

VascodaGama's picture
VascodaGama
Posts: 1754
Joined: Nov 2010

It may be too early for making any judgement on the treatment outcome. You may be experiencing the phenomenon "bounce-PSA", typical in RT approaches in guys with the gland in place. PSA may rise and then fall until it stabilizes in a plateau. Later it will reach to a nadir value that will certify the success.

See this;

http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&ved=0CEAQFjAE&url=http%3A%2F%2Flink.springer.com%2Fchapter%2F10.1007%252F978-1-4471-2864-9_68&ei=Zkl-VPmSFaWwmwWyqYK4CA&usg=AFQjCNH6L-4YFRzL44JyJ0BlCsVQMjA86w&bvm=bv.80642063,d.dGY&cad=rjt

http://www.harvardprostateknowledge.org/what-is-a-psa-bounce

In some patients this takes years to be achived. In any case, the "real" nadir considered in judging progress will be a PSA result in a test done after loosing the HT (hormonal) effects. In your case it is to occur in 1.5 to 2 years from now, because you still got one more year in HT. Surely some other causes (such as infection) could be responsible for the increase but you will only know the facts by constantly "supervising" with periodical tests.

Best wishes

 

Jacquet
Posts: 26
Joined: Jan 2013

VG,

 

Got my blood work back and it appears that the person who read results to me over the phone about a week ago did not know how to read the results. After consultation with my physician, my PSA was <0.014, which is good I believe. Then my physician told me I had type 2 diabetes. So, I'm good on the prostate front but have another battle to fight now. I guess I need to open up on a blog for that.

I'm still on the HT (had my 90 injection today).

 

Thanks VG, I'll be cheking in from time to time.

 

Jacquet

Jacquet
Posts: 26
Joined: Jan 2013

Still doing well. no increase in PSA and feeling pretty good!

VascodaGama's picture
VascodaGama
Posts: 1754
Joined: Nov 2010

Glad to read the good news. What about the diabetes, how are you fighting that "front" ?

Please tell us about your doctor's recomendations.

Regards,

VG

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