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Zeropoli
Posts: 5
Joined: Oct 2014

i heard this week I have prostate cancer.

PSA 13.9

biopsy came back positive in all 12 cores

gleason 3+4 in all but one 3/3. Cores were all 80 to 100%.

i am with kaiser, but can switch as open enrollment is here.  In walnut creek,ca

I am 49. dad had prostate cancer, went through surgery and lost urinary control. So I am concerned.

thanks, zero...which now takes on new meaning! Go 0 PSA!

hopeful and opt...
Posts: 2330
Joined: Apr 2009

I am sorry for your diagnosis.

There is a fellow poster, Swingshiftworker  from the San Francisco area who had switched away from Kaiser so he could choose from other treatment options that Kaiser does not offer.

In your case, where the medium aggressive cancer is extensive, it is possible that the cancer has gone outside the prostate,so doing surgery may or may not cure .The side of effects of doing more than one treatment is cummulative, so if you have surgery and the cancer is not cured you will need another treatment, such as radiation and/or hormone treatment.

There is something called a multi parametric MRI with a Tesla 3.0 magnet that can show if there is extra capsular extension (outside the prostate) . Kaiser does not offer this diagnostic test that I beleive is critical in your case. You want to know where you stand. UCSF is world known as a top institution for prostae cancer. They offer this test. There are also other top institution in the area. 

Also it is a good idea for you to send the pathology slides to an outside world class pathologist that specializes in PCa so that you are not under or over treated.

You need to do research, read books, internet, etc, etc, attend local support group(s) for knowledge and emotional support. There is an international organization that probably has a support group near you. USTOO.com...  Google this site to find a local support group near you. Also look for other support groups in your area.

Keep us in the loop, we can help

Best

Hopeful

Zeropoli
Posts: 5
Joined: Oct 2014

i think I have worn out the Internet this week. my wife and I have read everything we could and still feel the options are not all presented. I have heard offs is the best Place for prostate cancer. i think I will switch and find the best as I cannot get this wrong. Kaiser seems to have every treatment option in the area except I cannot see why they offer one option in one place and another at another, seems to me you want to focus your efforts one one or two ...

 

appreciate the insight.

Z...hoping for zero!

hopeful and opt...
Posts: 2330
Joined: Apr 2009

As you probably realize, you are faced with a myraid of various treatments, and you and your wife have to make the "best" decision. For the most part each of those who speicialize in a treatment choice will tell you that they have the best. Not only do you need to do research on the internet, etc but you need to interview the "artists" in each specialty. There is a difference between doctors....be careful, some of these docs are sharks.

Basically I presented to you a couple of diagnostic tests that will give information so you can make a better choice. There are others such as PET scans,etc....you may wish to read through the last several thread to pick up some information

You mention, "offs is the best Place for prostate cancer" . Not living in the San Francisco area I do not know what offs is.

Here is a ranking of hospitals in the USA by specialty. It is put outb y US News and World Report.

http://health.usnews.com/best-hospitals/rankings

By the way , if you are interested in having children, you may wish take appropriate steps to store before you go for  treatment.

By the way we all go through shock and all those negative feeling when we are diagnosed.   This usually last a few months. Be upbeat, if you attend religious services make sure that the clergyman is upbeat; otherwise switch. Do service, you get a lot back.

Be sure to eat heart healthy, as strange as it sound, we who have been diagnosed with prostate cancer are more likely to die of heart disease.

There are others at this site who are very knowledgeable so keep asking questions, or use us as a sounding board

Just focus on making  the right decisions...keep on researching....

Best,

hopeful

 

 

 

Zeropoli
Posts: 5
Joined: Oct 2014

i meant ucsf not offs. Luckily I have children, so that's good. 

Thanks!

zeropoli....hoping for 0!

VascodaGama's picture
VascodaGama
Posts: 3369
Joined: Nov 2010

Zeropoli

Your post made me to recall the time when I was diagnosed. I think we all go through the same feelings and disbelieve in particular when we are young at the 50th. My wife and I did not have much information or books in English about the problem (we were living in Japan) and it was the access to the information on the internet that saved us. In one week I did know well about diagnosis and in two months I managed to understand the intrigues of the treatments.

Interestingly my biopsy revealed also the presence of a voluminous cancer (all needles positive) in a setting of very high PSA (22.4 ng/ml), without hyperplasia or inflammation. Later, after an unsuccessful surgery I was diagnosed with a case of micrometastases.
This is when the cancer spreads and forms many tinny colonies which locations are difficult of being detected.

Now, 14 years on the run and after two unsuccessful radical treatments, I can appreciate on how much we cancer patients lose along our journey for not getting the best diagnosis possible. In the last decade there has been tremendous improvements in the way one should “look” upon prostate cancer. The initial diagnosis done with the latest techniques may be expensive but it is worth any penny spent on it because what we will decide in our “firs steps” will rule our destiny. There is much quality of life in the “game” that we can lose and our family will also be droved in the “wagon”.

Hopeful above gave you excellent suggestions. The decision starts by looking for experienced physicians and modern facilities. Second opinions are always a must do thing. And to understand all that, we much take the “driver’s seat” in the command of our case with educated guesses.

I wonder what made you to get the biopsy. Was it because of your father?

Sons of PCa patients are at high risk (about two folds) for having the disease. This means that your sons should be checking at an earlier age that what is recommended. I did so to my son and he did the exams when he turned 40. Genetics are also a tool important in the diagnosis process and in future treatments. Here is a link you may be interested in reading;

http://www.cancerresearchuk.org/cancer-info/cancerstats/types/prostate/riskfactors/prostate-cancer-risk-factors#family

 

Can you share more details about your case and you?

Do you have a chronology of PSA tests before the biopsy?

What about symptoms or any difficulty in urinating or having erections?

Have you done a DRE and any image study?

Is there any sort of bad readings in other lipids tests?

There are several books on treatments for prostate cancer. One still considered good as a source of information was written by a famous surgeon Dr. Patrick Walsh (of Johns Hopkins) named: A Guide to Surviving Prostate Cancer (third edition). This helps to understand the options of surgery and radiation. However, Dr. Wash is biased so that in his writings he gives preferences through surgery.

If your insurance permits you could also get a genes test to had data to your file;

http://www.sciencedaily.com/releases/2014/02/140220193508.htm

http://www.cancer.gov/cancertopics/pdq/genetics/prostate/HealthProfessional/page6

 

Best wishes in your journey.

VGama  Foot in Mouth

 

Zeropoli
Posts: 5
Joined: Oct 2014

i started having urination issues so I went in. My regular doctor found my prostate " hard as a rock" so he sent me to a urologist who within a second of feeling it scheduled the biopsy. the exam hurt so I knew it was not good. i dont have any other info as I have not consulted with the urologist yet. He sent me their weak pathology report, not much info about anything but the score, core percentage and basically it's cancer.  I emailed my doctor about scans and he said that I don't need them. Thought that okay, it's slow growing, he is not worried.....so glad my wife researched and got me to look too. I am not happy with hI'm downplaying Gleason 7...yikes. 

I don't have any other PSA tests as this was my first. Only one other DRE and two years ago I was fine. Same doc.

i noticed my sex drive fell to the floor a little over a year ago, thought it was the cycle of life....wrong!

i can share more Friday after I meet with the urologist. Hope he has way more info. If not I will be pissed.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Zeropoli,

 

I have not had time to order the books Vasco recommends yet, but did find one that seems high-quality on the shelf at Barnes and Noble, so presumably it is in their supply network (possibly at a store near you).

Dr Peter Scardino's Prostate Book (Avery Press, 2010).  Dr Scardino is Head of the Surgery Department at Sloan Kettering.  All of the terminology is explained in full detail, and I especially like that it has separate chapters on all of the current treatment options, describing the pros and cons.

As Vasco alluded to, most doctors are going to recommend (within reason) the treatment that they themselves provide. Dr. Scardino mentions this himself, but then ironically seems to have a preference toward surgery.  It is interesting to me that he often suggests that OPEN surgery has advantages over laproscopic and robotic; he explains the technical resons why this is so, but it goes against the grain, in which people feel that anything new or more automated is better than something done by hand. 

The same is true of radiation therapies: He explains why the latest gadget's claims are very often inflated or unfounded, and a better established treatment is better.  Or, at least just as good. 

I get my biopsy results in a week, and have been trying to ramp up on what to do if it comes back positive. There is a lot to know and decide in prostate treatment, that much I am already aware of.  When I was diagnosed with widespread, Stage III lymphoma everywhere from my neck to pelvic region, it was much simpler: "Begin a five-drug chemo  cocktail or die."  Choices are a good thing.

Good luck with your choices,

max 

 

Zeropoli
Posts: 5
Joined: Oct 2014

max, thanks. I will check out the book. I hope your results come back negative. I don't wish this on anyone. I have all sorts of thoughts and feelings rush in. I am going to get more info and figure out the steps. I changed to blue shield for open enrollment. Can't go,until January 1 Though. I think I will make the second opinion appt and pay out of pocket...

waiting for for two months is not bad, right? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

Zeropolis,

 

Thank you for wishing me well.

I do not feel qualified to comment on whether a two month wait in your case is reasonable or not.  You provided a fair amount of information from your pathology report, as well as from your clinial presentation, and I hope some of the more experienced guys will answer your question.  I am just not comfortable venturing into that at this point.

The hardness and pain in the gland intuitively make me think sooner might be better, but I defer to those with a lot more experience.  Also, of course, ask your doctor about any proposed wait.

Max

 

 

hopeful and opt...
Posts: 2330
Joined: Apr 2009

Suggest that you obtain a written copy of all tests and office visits so you can have as you see various specialists.

Suggest that you coordinate with Kaiser to have a second opinion of the pathology from the biopsy from a world class,  outside institution such as Jonathon Epstein at Johns Hopkins, . Kaiser may pay for this, otherwise it's about 250 dollars out of pocket.

You said that the doc at Kaiser is not worried about extensive volume of Gleason 7 . I think that he would worry more if it was his body. You need to be the CEO of your treatments...these docs are hired hands and work for you.

Keep on researching

VascodaGama's picture
VascodaGama
Posts: 3369
Joined: Nov 2010

Zeropoli

I sense anxiety in your sentences. It is natural to occur when dealing with the unknown. You need to research more and get acquainted with the situation so that you become “comfortable”. Anxiety is a friend of our enemy.

You inquired about how much time you got to make a decision; however there is not such an answer. You shouldn’t get loose and shouldn’t rush to a decision without knowing well your status. When you feel you got it and it is right, do it, but do things coordinately.
In fact were you diagnosed 2 months ago or two month from now, nothing would change the way to proceed and the choice of a treatment. Prostate cancer does not spread overnight. It is alive and progressing and needs attention and intervention. We should be ready and get the best “weapon” to fight it. Spending two or three months in researches while advancing with the exams is proper.

Each case of PCa is unique and different. In my case it took me 2.5 months to be ready. I did my researches, become an in-patient in a very good hospital so that I could speedup and avail of the best equipment in exams for the diagnosis, consulted 4 specialists in each field of treatment, spoke to survivors and discussed with my family. I was 50 years old with a responsible job at hands and managed to coordinate things the best.

The info you provided sets you at high risk for future metastases, according to the statistics. 12 needles positive, Gs7, positive DRE, urethra constrictions and probable seminal vesicles involvement. You need more tests and exams to get a due clinical stage. This will then provide data to judge a treatment. Your doctors may already suggest something but that would be based on their past experiences with other patients. How far good are they? How many cases have such doctor cared for?

Typically the treatment of choice is judged on the clinical stage (detail information from the biopsy, DRE and image studies), and guessing on cancer location. The choice involves four main approaches: Contained, Localized, At far places or Systemic. Only radical treatments provide cure and such is mostly assured if the cancer is contained whole in the gland. Surgery aims at that by dissecting the whole prostate gland (therefore dissecting the whole cancer). All forms of Radiation, Laser thermal therapy or cryotherapy also got high rates of success as those of surgery when the cancer is contained. For localized but not contained cases Radiation is the choice. It manages to treat a wider field. Cancer at far places is usually treated with spot radiation. In cases where these types of therapy are not proper, the Hormonal therapy is the treatment of choice. There are other kind of therapies (such as Radiofrequency ablation, etc) but they are new and there are no reliable statistics about their successes. Chemotherapy is recommended in systemic cases or used in combination with a radical treatment.

None of the above is free from risks and side effects. These are facts to be considered in the final decision because they may be permanent. They will interfere with our quality of life and one should list all hazards’ probabilities to decide in counter measures or on what is acceptable. Surgery got a high percentage of incontinence and erection dysfunction. Radiation is highly linked to proctitis, colitis and inflammation of the bladder. You may not father another child.

It is scaring but one should be positive and act and try the best. Living with the uninvited guest is only for those with very low risk of disease progression or for the ones that got the guts and courage.

May I suggest you to get a testosterone test done now in your next blood draw for the lipids. Also a colonoscopy would verify if you got ulcerative colitis which, if positive, would proibit radiation therapy. Better to know where you "stand".

"Please note that 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."

 

Best wishes,

VGama

 

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