CSN Login
Members Online: 16

Dad doesn't know what procedure is best

daughter27
Posts: 38
Joined: Jul 2010

After posting on another thread I thought it might be best to start a new thread...as each case is really individual.

Just looked through my father's paper work again...

Earlier this year PSA dropped to 5.9 from 6.6. It was 5.2 at the time of
his biopsy.

Now he has a PSA of 8 and a Gleason of 8...Although it states in the paperwork that the doctor discussed his options with him I think my Dad still doesn't know what is best.

He is 71, has a history of cardiac problems and unfortunately is overweight...having said that makes him sound sickly...but he isn't he is very positive and always on the go...

They have him scheduled for another biopsy...not really sure why as I heard it is important that he start some kind of treatment...

After reading a page about the possible side effects I only feel more lost and confused...

Any help would be appreciated...

daughter27
Posts: 38
Joined: Jul 2010

ps at his biopsy last summer only one of one core contains cancer

daughter27
Posts: 38
Joined: Jul 2010

As I am new to creating and working with the threads here I have responded individually to each of your questions...hopefully it all makes sense...

What I would like to add here is just again a big thank you for all of your quick responses and sensible questions...I didn't really know what info to include and what not to...

I will continue to keep you updated and again any and all info is greatly appreciated...thank you for answering my call ;)

daughter27
Posts: 38
Joined: Jul 2010

Dad opted to have the second biopsy as planned.

This time he said they did it in a different manner...the first time he was placed in stirups ...with this measurement he got 3+3=6, this time he lay on his left side and got 2+2= 4. Naturally we realise this doesn't mean that it is going away, but that was taken at a different area.

I will be home next week and will go to the cancer hospital with Dad for a second opinion when I am home. We will then take it from there...

I will continue to keep you all up to date and wish you all continued good health...your information and support is making all this much easier to deal with...I sincerely that each and everyone of you...

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

That is very good news. Looks like there are many options.

daughter27
Posts: 38
Joined: Jul 2010

Hope so Kongo...trying to keep positive and be open. :)

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Your father needs to take some action with the Gleason 8 as soon as possible. In the previous thread you mentioned that he is overweight. How much overweight are you meaning?

Your dad needs to know that yes some prostate cancers can be slow growing but in my opinion an 8 is serious business. Yes all treatments are going to have side effects and the unknown can be scary.

Does he have a family member close by to assist him?

Larry

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

Daughter,

As Larry indicated, a Gleason score of 8 is extremely serious and your father should be consulting with physicians who can give him a realistic perspective of what this means and potential treatment options. From reading your posts I am a bit confused...did your father have two separate biopsies and the Gleason was upgraded from a 6 in 2009 to an 8 in 2010? I've never heard of that happening so fast but I am sure it is possible. I could understand a PSA rising from 6 to 8 ....

With a PSA of 6 and a biopsy that showed a single core cancerous that was staged at Gleason 6 an active surveillance may have been a prudent course of action but a Gleason 8 pretty much takes active surveillance off the table as an option of effectively treating the disease.

With your father being overweight and a history of bypass surgery, he is most likely not a good candidate for surgery at age 71. Radical prostectomy is a serious operation whether or not it is done with a robot or with traditional open surgery. Being overweight escalates the physical difficulty the surgeon would encounter and the stress on the heart is another variable that poses significant areas of concern.

I have a great deal of empathy for the situation you find yourself...being a long distance away and a father who is reluctant to see other specialists and may not appreciate all the factors that are in play here. Frankly, unless there is another family member who can help shoulder the burdens of taking him to specialists, asking the questions he may not want or know how to ask, weighing the impact of various treatments on his quality of life, and helping him make a decision, your father faces a very uncertain future. (I think you already sense an inkling of this)

One thing I think you can do rather quickly is to get all the facts straight. You should ask your father to sign the requisite HIPA forms that his doctor will require so that you can get copies of ALL of his medical records. The doctors can fax or mail those to you pretty quickly. You need a history of his PSA readings, the size of his prostate (measured during the biopsy), the pathology report, records of physician notes, an understanding of what Medicare and any supplemental insurance will cover, blood tests, copies of any bone scans and x-rays that were done to check for metastasis, blood panel results (where they would look for prostate cancer in the liver) and so forth. You really want everything. You should also coordinate with your father’s urologist to get a second opinion on the biopsy from another reputable institution such as Johns Hopkins.

One of the most emotionally upsetting aspects of this disease in the begining is making sense of the relevant information and potential options to treat this disease. As you begin to gather information and organize the information, you will be better able to get a handle on all of this.

Once you are armed with this knowledge, you can prepare a concise overview of your father’s diagnosis that would include age, BMI, PSA history, PSA velocity, PSA doubling time, PSA density, size of the prostate, Gleason score, Digital Rectal Exam results (DRE), and so forth which will enable you to screen and prioritize potential treatments, potential side effects, and likelihood of success. Without this knowledge I fear you are going to be bouncing from one urban legend, marketing hype, or “a friend said” tidbit to another and spend much wasted time going in circles.

Your father’s obesity and heart history will likely rule out surgery as an option. Other treatments include radiation, hormone therapy, cryotherapy (where they freeze the prostate), chemical or physical castration (to eliminate a major source of the testosterone that is feeding the cancer), HIFU (this treatment is not approved in the US and you must go to Canada or Mexico), among others.

Your father’s weight will increase the potential of urinary side effects that can involve varying degrees of incontinence but it really all depends on the treatment and you can’t figure that one out until you have and understand the meaning and impact of your father’s medical statistics.

You have a very tough time ahead both emotionally and practically as you sort this out. I hope you have someone to help you through the process.

If you’d like to talk about this, please send me contact information using the CSN email service and I would be happy to chat with you. There may also be local support groups you could contact or your church leader probably has dealt with parishioners who have gone through this that you could talk to. You need to connect with someone who has gone through the PCa drill to help put things in perspective.

My very best to you.

======================================
Age: 59, PSA @ Dx: 4.3, PSA @ Tx: 2.8; 1 of 12 biopsy cores showed ardenocarcinoma with 15% involvement: Gleason scored at 3+3=6; Stage T1c. DRE normal. No physical symptoms or family history of PCa. Treatment in June 2010 with CyberKnife radiation procedure. No side effects.

mrspjd
Posts: 693
Joined: Apr 2010

Your dad is lucky to have your caring support and concern during this difficult time. Kongo has posted some excellent non-biased educational info and advice. Not much to add, except one point on treatment options. A combination tx (treatment) approach of ADT (hormones) along with IM/IGRT (radiation therapy), might be another option to consider discussing with your father's doctors and of course, with your dad. Depending on your dad's PCa stats/numbers and PCa staging (T1-T4), medical studies have shown when this combination tx approach is used for "locally advanced" non-metastases PCa (such as T3), it has long term survival success rates and recurrance rates comparable to that of RP--radical prostatectomy (surgery). The sooner you obtain a second opinion report on dad's biopsy, the better, and further testing for dad may be indicated, such as a bone scan and pelvic CT scan, to rule out metastases. Soon, when you have more accurate info about your dad's PCa staging, his treatment options & choices will become clearer to you both.
Best,
mrs pjd

daughter27
Posts: 38
Joined: Jul 2010

Mrs. pjd

I see in his paperwork a T1C, but I am not certain what that means although I am hopeful that 1 is better than 4?

The more I am looking through his paperwork I see only the Gleason number with the biopsy and I see the PSA going up and down.

Thank you any and all info is appreciated. I am new to this and feel that the information on the internet although good feels so overwhelming...

much appreciated..

daughter27
Posts: 38
Joined: Jul 2010

Kongo,

Thank you so much for all this information.

I actually have a cd with his records up to April this year. So I don't have the new results of the new Gleason score. This one was apparently obtained through blood work, since he is scheduled for another biopsy next week.

I was also quite shocked that it would jump so high so quickly. As last summer when I was in I went to the doctors with him and it was before the biopsy, they basically didn't seem so worried and said that normally it is such a slow moving cancer etc...

The fact that my Dad said Gleason makes me think that he didn't get it wrong, but perhaps he did. Perhaps I can get the new info sent via email.

And yes the uncertain future is what makes this really difficult..It says in the paperwork that the doctor did give him all his options and talked with him, but as you said it isn't an easy decision to make alone. In fact my father said that if they just told him..ok you have to do x he would be fine...surgery was one of the options as was radiotherapy and freezing (this was with the Gleason of 6 and they opted for watchful waiting), but I don't remember hearing mention of the cyberknife until this forum - so read up a bit seems like an interesting alternative to surgery, but with gleason of 8 would not be possible..

He has two methods of insurance that have thus far proven effective. As I am living overseas I have told him that that would also be an option if something seemed like the best solution but not covered- he doesn't sound like it would be necessary, but as the treatment facilities are top rate it could be an option...

As I learn more I may indeed use your contact info to chat...thank you so much for all your info and understanding...not so easy.

daughter27
Posts: 38
Joined: Jul 2010

Thank you so much for replying so quickly

Unfortunately he would need to lose 70 pounds or more to be at his ideal weight. The bulk of his weight is in the ab section...despite this he is a big man and doesn't have the feeling of being grossly obese if that matters.

and no, he is recently divorced and no family members that are close to assist him. He is a very social person that has many friends, but like many he is quick to offer help and doesn't like to ask for help.

I will be home in a months time, for a month. I wish that I could get everything arranged for him before that, so that I can assist him in any way possible after a treatment as well...

I will keep you updated...

hopeful and opt...
Posts: 1310
Joined: Apr 2009

From the information that you posted, I am understanding that only one core has been positive and that it a total of 8...you do not mention the other numbers...4=4 or 5=3 or 3+5; also please state how many core were taken. What was the involvement of the core that was positive(what percent) Exactly when was this biopsy taken?--what month and year. Also did he have a second opinion on the pathology of the biopsy....this process is very complicated and there can be a mistake...there is an outside possibility that the number is not an 8.

From what I am guessing since the information that you gave is not specific and complete is that a low volume of cancer has been found, but it is aggressive...........the more aggressive the cancer the more quickly it will progress. Since your father is young the disease will progress more quickly than his expected time left in this world, unless he has medical problems that will shorten his life.

My opinion on the information that you gave is that he needs to have a second opinion on his biopsy results and if it is confirmed he needs to pursue an active treatment option.....some of these treatment options have weight restrictions. You need to do research on treatment options.

For your information I am listing the various tests that I have had . I am currently doing active surveillance .

Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI(tesla 1.5) with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Entered in a research study for active surveillance at UCLA.
PSA at UCLA, 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
June 2010 ...MRI(tesla 3.0)
June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found

daughter27
Posts: 38
Joined: Jul 2010

Thanks as well for replying so quickly and sharing so much info...greatly appreciated.

The Gleason numbers I have are 3 + 3 = 6 and that is from October 2009. Biopsy was taken in October....12 core samples were taken..."ADENOCARCINOMA (GLEASON SCORE 3 + 3 = 6) INVOLVING 40% OF THE SPECIMEN (1 OF 1 CORES CONTAIN CANCER)."

PSA last year September it was 5.3 October 5.2 in December 6.6 then in February 5.9 and now 8...which feels like quite a jump. He tells me that the Gleason is also 8...but as I said to Kongo not sure if Gleason number is only derived from biopsy or also from blood, as I only can find the one Gleason score with the biopsy.

T1C

I don't believe he had any MRI, I am only finding ultra sound information...

still not certain about why he is scheduled for the second biopsy since it doesn't sound like repeating biopsies are so normal...but perhaps to check and see if the 8 is accurate?

thank you once again...continued best of health for you in your active surveillance...

hopeful and opt...
Posts: 1310
Joined: Apr 2009

The gleason score does not come from a blood sample.......the PSA comes from the blood sample...it sounds like your fathers PSA went to 8.....since his PSA is rising which tends to give an indication of the aggressiveness of the cancer........your father's doc is doing another biopsy to see what is happening, which is perfectly valid and appropriate.

There is a brand new type biopsy machine which is three dimensional...only a very few facilities have this...ucla where I am treated has one.....basically the patient has an MRI which determine lesions.........the new mri machine can target these lesions using this biopsy machine which has ultrsound capacity......since it is three dimensional one can go back to a site at a future time.

Weight limit.....if your father is not able to continue with active surveillance one option of many is proton beam.......there is a weight limit.....What is your fathers total weight?

I think , but I really don't know, that there is a difference in requirements for proportionate weight for open versus robotic...but I really don't know.

Anyway good luck on your father next biopsy.....make sure to get a second opinion on the pathology, no matter what the results.

Ira

PS Sometimes PSA is affected by sex or riding a bike before or some kind of infection in the blood which is more common than you think //// this can be treated, and a retest PSA in say a month.

daughter27
Posts: 38
Joined: Jul 2010

Ira thanks so much....got tears in my eyes this time cause I am hoping this is what happened that Dad just told me the wrong scores and its "only" the PSA that went up...

Use of the MRI sounds like a really good process...especially when you are watching for any changes...what they say in my Dad's paperwork is that they used an ultrasound to determine the points for the biopsy samples...but perhaps if indeed it is PSA rising and not Gleason maybe its something I should look into for him...

I believe his weight is close to 300....as I said he is a big guy and a good weight for him was always 220...after open heart surgery...20 years ago he went down to 190 and was really exercising and watching all that he put in his body...subsequent diet changes over the years brought his weight up...in the past 240 was a place he stopped and lost weight at...but over the past 10 years he hasn't been eating as healthy and recently eating out for a majority of his meals...obviously he knows he needs to loose weight and now that he is single again I think he is worrying about it a little more..perhaps if it isn't at the stage where an operation is necessary right now knowing about the risks and options available at different weights may help motivate him to live a much healthier lifestyle... at 44 I style would like my Dad around for a while...

since he will get the results shortly before I arrive home I will be able to go with him for the second opinion and also would like to visit the doctor to see about the options available...

its such a scary thing and so difficult to advise when its all new to me too...I soo appreciate the support given by you and the others...on the up side if things are caught early it seems like success rate is really quite good and for people like yourself as well...keeping an eye on things as it is general quite slow moving seems to be the answer for many.

I will let you know when I know more...but yes I am afraid to get excited about this but hoping its not a gleason of 8 in the biopsy and Dad was simply confused when giving me the info over the phone...

Hoping that your active surveillance numbers continues to be low and that you continue to be healthy...thank you for easing my mind about the biopsy and everything else...

daughter27
Posts: 38
Joined: Jul 2010

Ira thanks so much....got tears in my eyes this time cause I am hoping this is what happened that Dad just told me the wrong scores and its "only" the PSA that went up...

Use of the MRI sounds like a really good process...especially when you are watching for any changes...what they say in my Dad's paperwork is that they used an ultrasound to determine the points for the biopsy samples...but perhaps if indeed it is PSA rising and not Gleason maybe its something I should look into for him...

I believe his weight is close to 300....as I said he is a big guy and a good weight for him was always 220...after open heart surgery...20 years ago he went down to 190 and was really exercising and watching all that he put in his body...subsequent diet changes over the years brought his weight up...in the past 240 was a place he stopped and lost weight at...but over the past 10 years he hasn't been eating as healthy and recently eating out for a majority of his meals...obviously he knows he needs to loose weight and now that he is single again I think he is worrying about it a little more..perhaps if it isn't at the stage where an operation is necessary right now knowing about the risks and options available at different weights may help motivate him to live a much healthier lifestyle... at 44 I style would like my Dad around for a while...

since he will get the results shortly before I arrive home I will be able to go with him for the second opinion and also would like to visit the doctor to see about the options available...

its such a scary thing and so difficult to advise when its all new to me too...I soo appreciate the support given by you and the others...on the up side if things are caught early it seems like success rate is really quite good and for people like yourself as well...keeping an eye on things as it is general quite slow moving seems to be the answer for many.

I will let you know when I know more...but yes I am afraid to get excited about this but hoping its not a gleason of 8 in the biopsy and Dad was simply confused when giving me the info over the phone...

Hoping that your active surveillance numbers continues to be low and that you continue to be healthy...thank you for easing my mind about the biopsy and everything else...

hopeful and opt...
Posts: 1310
Joined: Apr 2009

The second opinion that I mention is to simply call, and have the parrifin blocks, the biopsy sent to john hopkins for a second opinion to make sure that your results are accurate.

However what I would do on Monday morning is to call the doc and ask for medication to clear up any infection that might be in the blood that elevates the psa. ...if in fact the psa was elevated because of an infection, he will be able to wait before another biopsy. Also speak to him, and have a generational talk and find out if he had sex or biked before the psa that would elevate the psa.....of course all this is his docs decision.

I'm pretty sure that proton beam is eliminated........I had contacted the center at loma linda, and the weight limit then was 250

your father like all of us is more likely to die from heart related disease than from prostate cancer so he needs to take an active roll in changing his life style. Resulting from his obesity he may already have some related disease such as diabeties.......

ira

daughter27
Posts: 38
Joined: Jul 2010

I spoke with him tonight and told him that its basically nothing he doesn't know already, but that he really needs to think seriously about losing weight, that a lot of potential treatments would be eliminated because of his weight and that overall his health would improve...he agreed..

I said that there was a lot the could cause the PSA to rise and mentioned this...he said he heard of friends of friends that have had higher PSAs and that it wasn't as important as the Gleason. I don't think he had sex and I know he didn't ride a bike...an old ankle injury is giving him trouble, making him more sedentary..thus weight a bigger problem..

What I don't understand is that I also emailed a friends sister *urologist and I think perhaps she doesn't understand the potential or real ? confusion with the Gleason number and she said watchful waiting is only good when psa remains stable and gleason is under 7...which I think it is..now...but as the first email said 8 she may (I hope) be responding to this... based on all his other history she recommended percutaneus radiation.

I think its ok that he has the additional biopsy and this sounds like a great idea to send info to hopkins. I didn't know that they would do this. I was also thinking of making an appointment for when I am home to sit down and talk to specialists perhaps at Rothmann institute...

Proten beam actually seems like a great procedure I read up about it a bit some places listed 350 as the max and a waist of 38. think he may be into 40s now...and yes some listed 250...

I will also ask him if the doctor gave him any meds for an infection...

thanks again...for everything...I will continue to keep you updated...

daughter27
Posts: 38
Joined: Jul 2010

I spoke with him tonight and told him that its basically nothing he doesn't know already, but that he really needs to think seriously about losing weight, that a lot of potential treatments would be eliminated because of his weight and that overall his health would improve...he agreed..

I said that there was a lot the could cause the PSA to rise and mentioned this...he said he heard of friends of friends that have had higher PSAs and that it wasn't as important as the Gleason. I don't think he had sex and I know he didn't ride a bike...an old ankle injury is giving him trouble, making him more sedentary..thus weight a bigger problem..

What I don't understand is that I also emailed a friends sister *urologist and I think perhaps she doesn't understand the potential or real ? confusion with the Gleason number and she said watchful waiting is only good when psa remains stable and gleason is under 7...which I think it is..now...but as the first email said 8 she may (I hope) be responding to this... based on all his other history she recommended percutaneus radiation.

I think its ok that he has the additional biopsy and this sounds like a great idea to send info to hopkins. I didn't know that they would do this. I was also thinking of making an appointment for when I am home to sit down and talk to specialists perhaps at Rothmann institute...

Proten beam actually seems like a great procedure I read up about it a bit some places listed 350 as the max and a waist of 38. think he may be into 40s now...and yes some listed 250...

I will also ask him if the doctor gave him any meds for an infection...

thanks again...for everything...I will continue to keep you updated...

142
Posts: 169
Joined: Dec 2009

Others have mentioned this as well, but you need to know some more details:

How many cores were taken in the biopsy? My insurance company only pays for 6, the Dr. did 12. There are also "saturation" biopsies of many more.
How many cores were positive? That gives the Dr. some perspective of extent - 1 of 6 might be luck hitting the right spot, but 1 of 24 might mean a very small area involved.
What was the Gleason component, not the total? Gleason is measured as two numbers, with the highest % represented being first. So a 3+5=8 is better than a 5+3=8.

PSA is only an indicator. Dr. Walsh makes the point in his book that you can have a low PSA and have cancer, and a high PSA but no cancer. It is the value, age, and change rate together that are important.

Perhaps the first biopsy was a low number of cores, and now they want to get a better picture.

You don't say what options they offered (I am younger and much worse Gleason, so mine were limited, DaVinci, open surgery, or IGRT - seeds, cryo, and AS were out, HIFU and cyberknife not approved by the insurance). I could guess as a non-medical person, that they suggested IGRT/IMRT and/or seeds. My Uro. said he won't generally do surgery after 70, but that is a very case-by-case decision.

Don't panic, there is still some detail you need to glean from the reports.

daughter27
Posts: 38
Joined: Jul 2010

142 ...as indicated in the previous post he had twelve core samples only one of which was found to be cancerous and of that 40%....3 + 3 = 6 at the time of the biopsy in oct 09

Listed in the paperwork is options they gave him, but it reads more like they gave him pros and cons than really any suggestion or advice : "his options of watchful waiting versus surgery versus radiation versus radioactive seeds versus cryotherapy versus hormone therapy
versus high intensity focus ultrasound (which is not FDA-approved or available in the
United States) versus combination therapy.He has opted to watch this."

I will try not to panic....thank you...cyberknife is not listed and I am not sure is it not an option for him or as you said in your case, not covered by insurance....

wishing you continued good health ...thank you for all your info...the numbers are all dancing in my head a bit, but the nicest thing is the feeling you aren't alone...

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Daughter27: I'm glad to hear that you have the correct numbers now from you dad.

I gleason 6 is WAY Better news then a Gleason 8! As allready mentioned the PSA is from Blood work and the Gleason is from actual Biopsy samples. A 12 core sample is very common to take and the good news is they only found cancer in one of the 12 cores.

There are numerous other treatments that your dad can have if they completly rule out surgery. He might want to look around for other surgeons to also see if they would completly rule him out. It sounds like with the heart problem and weight is the main concern.

Other treatments include brachtherapy, Radiation, cryotherapy, cyperknife and proton.

Good luck and keep us posted!

Larry

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

Daughter,

After reading your latest series of posts, it seems to me (as it does to others who have responded) that your father most likely confused Gleason Score and his PSA. You can only get a Gleason Score from a biopsy. A Gleason score is a rating system the pathologist uses to grade the aggressiveness of cancer cells found in a biopsy sample. Scores can go from 2 to 10 and are expressed as the sum of two numbers. The most common Gleason score is 3+3=6. The first number indicates the aggressiveness of the most commonly found cells and the second number is the rating of the second most common cells. So a 3+4 =7 is less worrisome than a 4+3=7. You need to know both numbers. The extent of involvement is listed as a percentage of a core sample. For example, in the case you cited with one core (a core is a small amount of prostate material taken in one of the needle pricks during the biopsy) having 40% involvement means that of that single core, 40% of the material showed cancer. If you look at Gleason Score in Wikipedia, it gives a picture of how a pathologist grades cancer cells. Since this is a very subjective exercise, many of us have recommended that you seek another opinion as the skill and experience of the pathologist can vary greatly.

Biopsies usually take 6, 10, or 12 samples. The doctor uses an ultrasound probe to position the needles to gather samples across the entire prostate. It's really a matter of luck whether or not the sample core has cancer in it or not. In other words, not finding cancer does not mean you don't have it. And finding a Gleason cancer of 6 in one spot doesn't preclude a more aggressive cancer in another. Sometimes the doctor will do what they call a saturation biopsy where they take 18 or more samples to get a more complete sampling across the entire prostate.

The stage your father has is a very low risk stage. T1c indicates cancer was found only through a PSA reading and that there were no other symptoms and that the digital rectal exam (the “finger wave”) failed to find a hard spot or palpable nodule on your father's prostate. Stage T1c is generally regarded as the lowest grade of prostate cancer (slowest growing and least potential harm). Stage 1 cancer is microscopic, confined to the prostate, and shows no evidence of spreading to other organs.

PSA readings measure the amount of a chemical called Prostate Specific Antigen (PSA) which is marker for prostate cancer. It used to be thought that only a prostate could generate PSA but PSA can also be found in women with breast cancer. It seems to be a chemical associated with certain types of cancer cells but can also be caused by other conditions as well. (PSA can be found in amniotic fluid during pregnancy, for example) It is most frequently associated with men and prostate cancer and a rising PSA for men over 50 might indicate the presence of prostate cancer. But PSA generally rises with age anyway, so a man in his 70s without cancer would probably have a higher PSA that a man in his 50s without cancer. Additionally, such things as sex before drawing blood for a PSA test, having the DRE before drawing blood, an irritation of the prostate causing inflammation (but not cancer) can elevate PSA, an infection, or an enlarged prostate (caused by benign factors) can also cause PSA readings to rise. For men with a prostate, it is only one of several potential indicators that cancer is present. It also may not mean anything.

PSA has also been shown to be related to diet and certain dietary supplements can lower PSA as well as reducing dairy, animal fat, and red meat in your diet.

Daughter, statistics have shown than in the US, more than 70% of men in their 70s who die of other means also had prostate cancer that wasn’t detected. While some forms of prostate cancer are very aggressive, most are very slow growing and the average histology of PCa is 52 years. In other words, the cancer in your father has probably been there for a long time and it’s most likely something he will die with not from.

As others have pointed out, the most serious threat to your father’s health is probably his weight and heart issues, not cancer. In fact, bringing his weight down, changing to a heart-healthy diet, and taking other steps could very well slow the spread of cancer while addressing the most pressing issues. His weight is going to have a major impact on the quality of his life with respect to almost any side effect associated with cancer treatment except perhaps active surveillance. If you father has any urinary issues now (he may be reluctant to speak about these) he will likely have them after treatment. Erectile issues now (also affected by his weight) will also exist after treatment.

I hope this all is starting to make a little sense. There are many, many variables. Please start preparing for interviews with various specialists. If you're not there, you may need to write out questions for your father in advance.

Hope the recent responses to your situation has eased your anxiety somewhat.

Best

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

Daughter,

Just a couple of other things...the doctors won't usually go over ALL of the options available. Most urologists are surgeons and over 90% of them will recommend surgery. Radiologists overwhelmingly recommend some form of radiation. The only way you can understand all of the treatment options available is to do extensive research on your own. This forum is an excellent source of information to help guide your search. Doctors usually tell the patient that they can have radiation, surgery, or active surveillance. There are many, many more options than these.

As others have mentioned, your father’s weight makes surgery problematical. Radiation includes brachytherapy where small, radioactive seeds are implanted in the prostate. Each seed is about the size of a grain of rice and are radioactive isotopes (either Iodine or palladium) which have a fairly short half life. The seeds permanently remain in the prostate. There is a version of brachytherapy where radioactive wires are inserted into the prostate and then removed called HDR brachtherapy. There are also a variety of external radiation therapies that deliver radiation to the prostate in such a way as damage to surrounding tissue and organs is minimized. CyberKnife is one of those therapies. My diagnosis was very similar to your father’s and I chose CyberKnife. CyberKnife uses five treatments (each lasting about 45 minutes) and uses a highly accurate delivery system to radiate the prostate. I had zero side effects (I’m a month out from treatment) and the overall process was fairly quick and easy. (I posted a series of blog entries on this cite that describe the process …click on my Kongo name in the blue box to the left of this post and then follow the tabs to blog) CyberKnife is a relatively new treatment method to treat many types of cancer, including prostate cancer. PCa has been used to effectively treat prostate cancer since 2003 and has very promising results although it does not have long term survival statistics other forms of radiation (like brachy) because it hasn’t been in use that long. CyberKnife is designed for patients with Gleason scores of 7 or less and a PSA of less than 10…in other words, cancer that is confined to the prostate. Similar dosage levels that CyberKnife delivers in 5 sessions is also done by methods that deliver it in 40-50 sessions. You would need to consult with a radiologist familiar with all the different types to determine which might be best for your father. Medicare in most states will cover CyberKnife but won’t in others. Similar confusing insurance rules apply to different types of radiation treatment.

If your father is a veteran and served on the ground in Vietnam or aboard certain specified ships that pulled into port in Vietnam, your father is likely eligible for increased disability benefits and free treatment through the VA (VA approves CyberKnife) because there is a presumptive link between Agent Orange use in Vietnam and prostate cancer. In other words, if your father served there…the VA presumes that the PCa is related to Agent Orange.

Concerning biopsies: Common practice is to use a needle gun to take the samples trans-rectally. In other words the needle passes through the wall of the rectum into the prostate and then back again for as many times as there are samples. Obviously there is a risk of infection and antibiotics are taken before and after the procedure. Some men (including myself) found the procedure painful even though an anesthetic is used to numb the prostate (another needle going through the wall of the rectum). Biopsies routinely cause some temporary blood in the urine, bloody stools, (which clears within a week) and blood in the ejaculate (which can last for a month or so). There is some debate in the medical community (and within this forum recently) as to whether or not cancer can spread outside the prostate via the needle tracks. Something to think about when the doctors recommend another biopsy. On the other hand, you can’t determine the stage and Gleason score without a biopsy sample.

daughter27
Posts: 38
Joined: Jul 2010

Thank you Kongo....then Yes this is a false 8 at least so far....

I was reading up on cyberknife and thought it also was quite a good option...this and the proton therapy looked like potentials with the least amount of side effects and good results. Although at present his weight would be a factor in proton it doesn't seem to be with cyberknife and there is a treatment facility not so far away.

My Dad is although pretty truthful and open with me regarding all this info, may also play down things a bit as he said it wasn't so bad (the biopsy sample) He kind of has the thinking if it needs to be done..do it..and think he might not to admit to me or maybe himself about the pain. He is a mind over matter type guy with most things so this could be the case here as well.

Ira gave me a good idea to send paperwork to Hopkins to get a second opinion I could have dad send me the updated info and do that. Also thinking about making an appointment at a bigger hospital in the city to go and talk together with Dad...

Insurance he is on Medicare and also has an insurance from his previous work that kicks in after medicare although he was in the service during vietnam he wasn't stationed there, but interesting to hear about that.

As I live in Europe I told him worse comes to worse treatment here is much less expensive and could be an option (he is not thrilled with that idea, but at least it makes me feel like we have options) the more I keep reading the more I keep thinking he should do something now rather than later...and am hopeful he could turn his life around with regards to weight etc since he did do it before...

I actually was reading a bit about the diary regarding your cyber treatment and told my father about that too...trying to create a list with all the pros and cons so that when it comes time to discuss with a doctor I can better understand and ask the right questions..

thanks soo much...I truly appreciate all this info...

I will continue to keep you updated and wish you continued good health...

Not sure how anyone does this without a forum like this....

hopeful and opt...
Posts: 1310
Joined: Apr 2009

Recommend that your father get a copy of all tests and office visit notes...you need this so that there will be no confusion, and if he sees another doc at another institution he needs this.

Excuse my ignorance.....I never heard of Rothmann Institute, where is it...what type of institution is it.....by the way we here at this forum are very open about where we live, since there may be other poster who live nearby, or we might know about support groups , etc......for the most part we are very open about our docs, especially surgeons.....some of them we call "rock stars"....an it is very important to know who the rock stars are.

When you send the pathology from your institution, you simply call, if your father had his biops at a hospital, the pathology dept.........sign any releases that they may ask for......and instruct them to send the blocks to john hopkins or boswick or another reputable organization who analyzes the parafin blocks.

My philosophy is to do the least that you can to treat any disease.....less is better....so in your fathers case, if the doc will prescibe a pill to eliminate any possible infection , and if your father before the next blood test for the psa will not do the activities that kongo mention, you will see a psa number that you can have a lot of confidence in. Your father may not need another biopsy for a while.

I mention the above since it has been a short time since his first biopsy.

by the way it is my opinion that one should be treated at the best doctor at the best institution.. I believe that a major medical institution will provide this.

Ira

daughter27
Posts: 38
Joined: Jul 2010

Ira,

Seems the apple doesn't fall far from the tree...My Mom went to Rothman...hip surgery a few years back...think I have a place in my brain for parents health and it all gets garbled up together-taking care of parents...I meant Fox chase...it is in Philadelphia..They allow you to do a second opinion appointment online- well nearly...they say they will get back to you.

So that is what I did, I will give them a chance to wake up and respond and if not I will phone. Also considering phoning the doctor about the biopsy scheduled...I know that they might not talk to me over the phone, but its a shot...

I guess I was hesitant on two counts at first...one wasn't sure that if you listed all medical information if it then just sounded like you were going on and on and it was somehow too much and I guess also since its not my info, but my Dads guess there is that part how much to protect and how much to reveal if that makes sense...but I am feeling quite safe here on both counts. :)

I have a cd with all the info...lab work and letters written to his primary care physician etc...up till april. but yes I would be interested in knowing who the rock stars were in Jersey/Philadelphia.. ;)

thanks

daughter27
Posts: 38
Joined: Jul 2010

Ira,

Seems the apple doesn't fall far from the tree...My Mom went to Rothman...hip surgery a few years back...think I have a place in my brain for parents health and it all gets garbled up together-taking care of parents...I meant Fox chase...it is in Philadelphia..They allow you to do a second opinion appointment online- well nearly...they say they will get back to you.

So that is what I did, I will give them a chance to wake up and respond and if not I will phone. Also considering phoning the doctor about the biopsy scheduled...I know that they might not talk to me over the phone, but its a shot...

I guess I was hesitant on two counts at first...one wasn't sure that if you listed all medical information if it then just sounded like you were going on and on and it was somehow too much and I guess also since its not my info, but my Dads guess there is that part how much to protect and how much to reveal if that makes sense...but I am feeling quite safe here on both counts. :)

I have a cd with all the info...lab work and letters written to his primary care physician etc...up till april. but yes I would be interested in knowing who the rock stars were in Jersey/Philadelphia.. ;)

thanks

daughter27
Posts: 38
Joined: Jul 2010

Larry,

I am really hoping this is the case...when I called him today he said it could be...he said that between the info he gets from the urologist and the info from primary care physician it sometimes all gets mixed up...I may try and ring the doctor, but not sure that they will tell me anything over the phone..the way I understand it is that Gleason is only found through the biopsy if this is the case then we will know more soon..

Guess I will tell him to go through with biopsy just to be on the safe side..

Although he isn't thrilled with all the potential negative effects of surgery...he says that if it keeps like it is going up and down etc...he would rather have them just take it out. Since it was a choice the docs gave him, I guess that they would be willing to do surgery...naturally if watchful waiting or another therapy would be good for now he would also do that...

thanks for all you help and just being a friendly face that has been there...continued success to you as you go through this...I will keep you posted...

macguy's picture
macguy
Posts: 18
Joined: Nov 2009

It is difficult to choose a treatment for prostate cancer but with an 8 a decision is needed. I had two sevens and one eight. My results are found if you search for cryosurgery. Your dad is lucky to have you help him thru this.

daughter27
Posts: 38
Joined: Jul 2010

Mac guy,

I can hear in his voice that he truly does appreciate it...but naturally I still feel somehow helpless knowing the right course of action. and as I said it all feels so scary right now...a urologist here says

percutaneus radiation ...no new biopsy needed and that she wouldn't recommend the seed implants...

guess the only way is to read read read and hear about others experiences...are you happy with the cryo?

trfouts
Posts: 14
Joined: Sep 2009

I had 3 biopsies in 1 year 2 were 12 and the 3rd was saturation biopsy (40) unless they do a saturation they do not get the total picture of the prostate,At this point your dad may want a saturation to really see what is going on. Good luck

finbar
Posts: 26
Joined: Aug 2009

I received the same inforamtion that there is a cutoff at age 74
for radical prostate surgery. Hormone, radiation and seeding were
recommended. I said no and sought another diagnosis. Recommendation:
okay to proceed if cardiologist givdes clearance.
I was 83 at the time, got the clearance, had a robotic prostectomy
and now 1-1/2 years later, I'm doing great. Bear in mind I had no
heart problem and was most anxious to get "it" out. PSA now 0.1

finbar
Posts: 26
Joined: Aug 2009

I received the same inforamtion that there is a cutoff at age 74
for radical prostate surgery. Hormone, radiation and seeding were
recommended. I said no and sought another diagnosis. Recommendation:
okay to proceed if cardiologist givdes clearance.
I was 83 at the time, got the clearance, had a robotic prostectomy
and now 1-1/2 years later, I'm doing great. Bear in mind I had no
heart problem and was most anxious to get "it" out. PSA now 0.1

finbar
Posts: 26
Joined: Aug 2009

I received the same inforamtion that there is a cutoff at age 74
for radical prostate surgery. Hormone, radiation and seeding were
recommended. I said no and sought another diagnosis. Recommendation:
okay to proceed if cardiologist givdes clearance.
I was 83 at the time, got the clearance, had a robotic prostectomy
and now 1-1/2 years later, I'm doing great. Bear in mind I had no
heart problem and was most anxious to get "it" out. PSA now 0.1

Trew
Posts: 892
Joined: Jan 2010

There is a man in our church still playing racketball at 86. He is a lawyer and works full time every day. I share this because age limits belong to a medical system that doesn't value human life as it should. that is my opinion. Finbar- you are an encouragement to all of us moving past the age of 60. thanks for pushing the bar up a bit for all of us.

daughter27
Posts: 38
Joined: Jul 2010

Trew...very right you are...age is not the same for every person and shouldn't dictate who is covered for what...

daughter27
Posts: 38
Joined: Jul 2010

Finbar,

Glad to hear that you are doing so well and that they gave you the clearance with 83 I think when you are in good health and its come to that point, then why not. Age sometimes is "just a number" ...In fact I just lost an online friend who would have turned 105 in September. I know people younger that are much older than her...Continued good health to you..

My Dad is basically of the mind set that if its going to be a problem then...just get it out. But lets see what the specialist say. He just got the results from the latest biopsy and this time it was 2 + 2 = 4 ...naturally the Dr. says this is all about the location etc... the last one was a 3+3=6....

so I will continue to update and see where this takes us..

Thank you

Trew
Posts: 892
Joined: Jan 2010

Dear daughter, a gleason of 8, 9, 10 is serious stuff.

I can't tell you how many times at both 8 and 9 I have heard the words "aggressive" from doctors discussing my cancer with me. I am afraid "they" will want to give him the old hormone shot. I do pray your father may find a way around that treatment. And family support is of great value right now.

Ralphie62
Posts: 47
Joined: Feb 2010

My husband just completed proton therapy at the university of Fl with excellent results...you should look into it and see if your father qualifies. There are little or no side effects, although the treatment takes 6-8 weeks. Most insurance covers it, and it is safe for people who are not surgery candidates. My husband was a gleason 6, upgraded to 7 when they re read his pathology at UFL.....i thing weight can be an issue, but one of my husband's buddies was a really big guy....i would say over 300....he had to recieve the beam bilat instead of alt sides as they usually do....you should look into it....no one will really steer you toward it. "Trew" encouraged us and we will be eternally grateful. I can't tell you how many men were there for second line treatment after prostatectomy failed. Most had good gleasons and were not advanced stage.....you can email me at lisaspride@aol.com if i can help you with this......ralphie,s wife

ps....i just called fla proton and a gleason of 8-9 is still treatable. Also, their weight limit is 350#, so he could be treated without the risks of major surgery.....just google fla proton and they'll send you a packet/ information

daughter27
Posts: 38
Joined: Jul 2010

Ralphie62/Lisapride...

Thank you very much for the encouragement...as you may now know the Gleason of 8 was a false number...so although the recent biopsy was 4 ...6 was the last one...

I will contact the proton office...all that I have read so far it seems to be a really great option...so it would be good to know more, and probably won't learn so much about it from the hospital...In fact you have motivated me to get info packets sent to Dad's to go over once I am home...its a great idea...

thank you so much..and I am glad to hear that the treatment was a success for your husband....

I will continue to update on here..

daughter27
Posts: 38
Joined: Jul 2010

Thanks so much Trew...the Gleason of 8 was fortunately misinformation. In relaying info my Dad confused the Gleason with the PSA...terrified me...

Old Gleason was 6...new one is 4...I am due in next week to the states and we will go to get a second opinion...hoping all will be good...

I heard that the hormone shots were truly terrible...so I hope it doesn't come to that either...

thank you Trew... I will continue to keep updating...I appreciate everyones support and knowledge...

Trew
Posts: 892
Joined: Jan 2010

If the Gleason is only a 4 or a 6, I doubt there would be any need for hormone shots. Hormone shots are the treatment of choice for old men, but I don't see why your dad would not benefit from proton and avoid all those naty after efects that some of us end up getting from surgery and regular radiation.

I met a lot of very happy proton patients at Loma Linda. I really wanted to be one of them.

I wish your dad well.

hopeful and opt...
Posts: 1310
Joined: Apr 2009

As you can see pretty much the same people are here to help.

Well.....I can be wrong but there is not a 2+2=4 gleason....I believe that 6 or maybe 5 is the lowest that is currently reported...but if it is only one core of a 2+2=4 or even a 3+3+6 your father can happily go on with his life, doing active surveillance....and he probably has what is indolent cancer, not likely to spread.

Please answer these questions for me.

How many cores were taken?

How many were positive?

Wjat is the gleason of each?

What is the involvement of each, that is what is the percent positive in each core?

Did you get a second opinion of the pathology from a different institution, if not you need to?

Ira

BRONX52
Posts: 156
Joined: Apr 2010

I AGREE WITH IRA. I NEVER HEARD OF A GLEASON 4. I GUESS IT'S POSSIBLE BUT I NEVER HEARD OF IT NOR DID ANY OF MY DOCTORS EVER MENTION IT. BUT IF IT IS A 4 OR 6 I THINK YOUR DAD IS IN A GOOD POSITION AS FAR AS TREATMENT IS CONCERNED. GOOD LUCK IN WHATEVER COURSE YOU CHOOSE--

DAN

Trew
Posts: 892
Joined: Jan 2010

Technically, a 4 is possible from the chart I saw on the wall of my U of MI doc that had all the Gleason grades clearly illustrated and rated. Time to just wait about more clarification.

daughter27
Posts: 38
Joined: Jul 2010

Yes I am hoping it will all be clearer when I get in. ;)

daughter27
Posts: 38
Joined: Jul 2010

The dr. says he will continue to go with the earlier reading...I think its only an indication that where he checked this time the number was low.

I think he was making sure that the gleason hadnt risen since the psa had...

thank you Dan.. ;)

142
Posts: 169
Joined: Dec 2009

The Gleason scale goes from 1 to 5, but I was told by my uro that Bostwick reports only 3 or higher. However, in this case, being a second reading, their lab may have reported a 2 to be clear (i.e. not benign, but not off the charts either).

hopeful and opt...
Posts: 1310
Joined: Apr 2009

This is my take as well....there are lower gleason scores, but 3+3=6 is the lowest reported, ...it's probably a good idea that a 2+2=4 is reported instead of a 3+3=6, however this is not typical... my understanding is that this is a new biopsy, and a first reading.

Ira

Subscribe with RSS
About Cancer Society

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

Copyright 2000-2014 © Cancer Survivors Network