Hello just diagnosed and very frightened

Hello Steve,

I'm 91 years old and a 25-year prostate cancer survivor. You are getting a lot of information from others. That's good. Treatments for PC have changed (improved?) since I began this journey with a prostatectomy, in 1991.

Even though I have had many experiences with and related to PC, I am not qualified to advise you. Learn as much as you can, involve your loved ones in your decision, then grab the ball and run!

By the way, my Gleason score was also 3+4.

One other thought, I feel that my life has been richer as a consequence of experiencing prostate cancer. Think about it.

Best of success to you.

Old-timer (Jarry)

Steve1961 said:

Ohh btw swing shift hasn’t

Ohh btw swing shift hasn’t posted since 2010 but thanks

 

 

You are very young and a good canditate for surgery if you decide to go that way. Depending on no medical issues. 

Seek 2nd and 3 opinions on treatments and go from there. Take your time slow down and educate yourself on this forum

and from reserch and doctors. Im trying to do the same being told oct i had 2 cores positive gleason 6 t2a tumor 25%

left apex. contained in prostate. It is a shock like being hit in stomach after leaving doctors office. Good Luck

Steve1961 said:

soo confused

dont mean to be a pain..the specialist i am seeing is a radiation oncologist...i asked my dr if this guy is a oncologist..the dr said a regular oncologist does chemo  and i dont need that so i am seeing a radition oncologist....so will thi s gyt be able to answer all my questions and is he an oncologist  ....damnnnnnn his name is david kornguth thanks i wont post again until io see this guy thursday

 

We've all been there.   Right now, try to relax (as much as you can) and take time with all the information you're hearing.  From my short time of six months researching and treatment, I'd take confidence in your PSA being under 8 and being a 3+4.  You can only go with the information you have, and the information you have so far is not bad for being on a site like this.

I too, skipped a year of PSA screening.   I'm 56, my PSA peaked at 7.9 January of 2017, after skipping just over a year.   I had the same thoughts about what if I hadn't skipped, but it may not have sped up the diagnosis either.  Then, I had a 3T MRI in April, Fusion biopsy in May to discover 3 cores; 3+3, 3+4 and 4+3 diagnosis.  Researching all options is a very good idea to pick the one right for you.  I've heard many good things of current radiation treatments, although a different direction than I took.  

My pathology report downgraded me to a 3+4 and I expect a full cure, but that of course is years off officially.  Mine had not left the prostate.  I'm just looking 90 days out at this time, because well, that's the plan for now.  The one thing you'll find is when you do start treatment, all the thought cycles about this will diminish and you'll get abck into your regular routines.    So again, take the time to read and ask questions.   Best wishes to you!

Steve1961 said:

soo confused

dont mean to be a pain..the specialist i am seeing is a radiation oncologist...i asked my dr if this guy is a oncologist..the dr said a regular oncologist does chemo  and i dont need that so i am seeing a radition oncologist....so will thi s gyt be able to answer all my questions and is he an oncologist  ....damnnnnnn his name is david kornguth thanks i wont post again until io see this guy thursday

 

There are three types of doctors that are involved inn treating prostate cancer:

Urologist - the first specialist you see. They do the DRE and biopsies, and perform surgery

Radiation oncologist - they perform the various radiation treatments to eradicate PCa.

Medical oncologist - when the cancer is systemic, they prescribe chemotherapy and medicines.

In aggresssive cases, men often have to see all three of them, one after the other.

In your case, either of the first two will likely cure you.

Steve1961 said:

Tomorrow can’t come fast

Tomorrow can’t come fast enough.the not knowing is the worst...I still have pain in my tailbone from the biopsy which of corse is unusual...it feels like a bruise because I have dine it before but of course I am thinking  that this crap has now spread to my bones  that’s why my. Dr suggested radiation ...man I hope I am wrong sorry for the venting ....

Welcome to you Steve. 

Prostate cancer (abbreviated 'PCa') very seldom 'hurts.'   Your biopsy numbers do not suggest that what you are feeling in your 'tailbone' in any way relates to PCa. Usually, only highly advanced cases that have significant bone metastasis will hurt, and none of your numbers suggest that at all.   You most likely have incipient (mild) or moderately intermediate (slightly aggressive) disease based on what data has been shared thus far.  I sense that you are panicing a little (fairly common and reasonable).  This PCa research will become old-hat to you soon.  There is no rush; in fact, rushing is often very harmful.  Being systematic is much better. 

Because before I got PCa I had gone through massive chemo and treatment for Lymphoma, and had been around several friends with advanced PCa, when my urologist told me that I had PCa I yawned in her face (it was an early morning appointment), told her thanks, and said we would be in touch.  I had already laid out which doctors I was going to consult, and did not need recommendations from her.  In other words, there was no shock for me.  The guys here who have been fighting PCa for 12-15 years will tell you that the melodrama wears off pretty fast for most men.  PCa is beatable or highly controllable in most cases.  It has never "frightened" me at all, although it is extremely inconvenient. I do RESPECT it however, and know that is some cases it can be a killer.

You are seeing the right people: A radiation oncologist (RO), and later a surgeon.  Likely, either can cure you, meaning eradicate all of the PCa.  Both will want to share their skills on you.  Very generally, surgery is only advisible if all results fairly strongly suggest no escape of the disease from the gland.  It is also a good choice for men with serious urinary problems or chronic, lifelong prostatitis, such as I had. 

Radiation therapy (RT) generally is easier to undergo than surgery.  And there are 3 primary forms of radiation, based upon how the radiation is delivered: 

(1) Fractionated. This is the most common form of RT and its origins derive from the oldest of radiation techniques, although it is today as accurate in delivery (aim) as the other forms.  Fractionated is also best if escape is likely or definite, and areas adjacent to the gland must be radiated also out of caution.  Fractionated takes about 40 applications, usually just on weekdays; a session is painless and you will be in and out within an hour at most cancer centers.  Codenames your RO will use for fractionated delivery are IMRT or IGRT.  IGRT is an advancement over IMRT in precision of delivery -- a better mousetrap.

(2) SBRT.  SBRT does what fractionated does, but faster. A patient will only go for about 5 treatment sessions, since each session has much more radiation delivered at once than fractionated does.  It is reportedly painless also.  There are a variety of SBRT manufacturers, but the most popular machines are known by their tradenames of Cyberknife or Varian Truebeam.  If the RT discusses either of those, he is discussing SBRT. Initially uncommon, SBRT today is almost as commonly available as fractionated and is a popular choice, although a few rural areas around the country still do not have SBRT in-house.  Most better centers today have both fractionated and SBRT to choose from in the same office.  I read this week that SBRT is now being used at some centers for area radiation outside the gland if the location of metastasis is well established, similiar to how ROs use IGRT.  This is still somewhat experimental however as a use for SBRT, and not something most ROs currently do with SBRT.

(3) Brachytherapy ("Seeding").   Seeding involves a surgeon placing tiny radioactive seeds, or pellets, inside the gland itself, as close to the known tumors as possible.  Seeding is usually not advised for more advanced or serious cases.

Although a few writers here are highly critical of surgery, it can be a good or even the best choice is some cases. One such case is when there is serious urinary blockage; surgery is then the best option, if metastasis is not suspected. A psychological advantage to surgery for some is that when the gland is cut out and studied by a pathologist in the lab, a man knows EXACTLY what he was dealing with: level of aggression, and escape from the gland is almost definitely confirmed or ruled out in most cases. My own case was diagnosed at Stage I using available data, but as soon as the pathologist dissected it, he knew with certitude that it was a significant Stage II.  This would most likely not have been discovered with RT.  While T3 MRIs and bone scans are much better than older PCa scans, imaging to establish where metastatic PCa is located (or to determine if there is any metastasis) are very imperfect; false negatives (missing tumors because they are too small for detection) are not uncommon at all.  Imaging in general for PCa is among the worst of all cancers due to how tiny metastatic PCa tumors can be.  Ordinarily, a CT for instance cannot spot a mass smaller than 3mm or a bit larger, but PCa can be significantly smaller than that. I am describing a generality in PCa detection, and am not interested in arguing with anyone over minutiae regarding what this or that machinc can do. 

Following surgery, the PCS will almost instantly (within 2 months or thereabout) go to zero and stay there forever, if the surgery was successful.  This can be an asset for men prone to stress.  

Conversely, following radiation treatments, PSA will oscillate for some time, ocassionally even a year or so, until a lowest PSA value, called a nadir, is established. Thereafter, the nadir is compared to subsequent PSA results over the years, and a formula is used to determine if relapse has ever occured. Differing cancer centers or labs use differing thresholds, or tripping points, to conclude relapse. But PSA following just RT will never go to zero. This is not a problem, just potentially unsettling for some men.

Surgery will leave almost all patients impotent for six months or more (a year is not uncommon).   But in the majority of prostectomies, most men regain potency at some point, unless age or significant preconditions preclude this.  Today, a technique called erectile nerve sparing is almost always used by surgeons, unless what they discover when the patient is open precludes this. Decades ago, nerve sparing was highly uncommon, leaving nearly all men impotent for life.  Luckily, no longer the case.  Rare horror stories occur in surgery and post radiation, as they do following any medical proceedure.  But RT side-effects are delayed, not instantaneous, and in general are usually milder for most men.  As one would expect, a person with problems is more given to report their situation than a person with no problems, so issues post-surgery appear frequent to some evaluators. 

I hope this helps a little. It is very general in nature; what you experience will not be exactly like what any other man experiences.  The ancedotal accounts men share with you will not be identical to your own, unique reality and results.

Good luck !

max

Steve1961 said:

First thanks for all info...

First thanks for all info....met with radiologist he right away recommended surgury.must have totally misunderstood  urologist....anyway will meet with surgeon soon and see if he wants to do mri. Radiologist said it would help but either way even if it’s nout contained we will do surgury. He said post pathology report will tell if tumor has spread or not as well  so mri is helpful but not necessary.  Still have discomfort in pelvis probably from the cancer and swollen prostrate...prostrate is pretty big 55 cc average is 15 to 30 I am being told...said is slow growing probably had cancer for 5 or 6 years. Just didn’t know it...reason my PSA was at 5.5 for about 6 years...they say if your prostrate is over 30 cc good  chance u have cancer ..to bad they could not just cut it out years go..but I guess no diagnosis no cutting oh well... I move into next step and hope for best....they alll seem pretty confident ..I am 6ft 3 200lbs in great shape and have good genes still have all my hair and hardly and wrinkles look like I am 44 not 56   Not bragging but DR says that’s all in my. Favor as well....will keep updating thanks again I will pray a lot not just for. Myself but everyone one this forum ...fight on 

It is doubtful that your pelvic pain is associated with your prostate or prostate cancer.   Prostate cancer is typically asymtomatic unless extremely advanced.   As far as the size of your prostate, 55cc is not very big at all.   Mine was 225cc at time of surgery, which admittedly is huge, but it caused me no discomfort (it did cause lots of urinary problems).   One thing I will tell you, between the time I got my diagnosis after the biopsy, and the time the doctor told me that the bone scans and MRI did not show any spread, I was having aches and pains all over, sure that I was riddled with cancer.

The best thing is to find the best and most experienced doctors you can, research and ask questions so you can make the best decisions about treatment, and then have confidence that that your innate good health and the excellent care you are receiving will carry you through.