Dad doesn't know what procedure is best

Kongo said:

Serious Condition
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.

hopeful and optimistic said:

daughter
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 said:

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

hopeful and optimistic said:

Not a gleason 8...very good news...celebrate
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.

hopeful and optimistic said:

second opinion
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