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Hello just diagnosed and very frightened

Steve1961
Posts: 249
Joined: Dec 2017

I was just diagnosed Thursday by my urologist . PSA 7.8 ..had 5.5 for many years with 3 biopsy’s and were all good. This last one not sooo good.2 out of 12 showed some cancer .thsts all I know until I see the specialist next Thursday.thoughmy urologist did give me encouragement saying we caught it very early whatever that means...don’t know what to ask the specialist on Thursday I guess my biggest fear is if it has spread or not ..any input would be muchhhhhhh apppreciated ..thanks in advance ..how I am 56 years old 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Dear Steve,

I am sorry for your diagnosis. We are here for you. 

For the first few months after diagnosis, all of us go through shock and all those negative feeling.

Please feel free to ask questions as you will. 

All prostate cancers are not alike. There is a difference. Some are benign while others aggressive, so you need to determine what is going on by obtaining information and obtaining the proper diagnostic tests, beyond the biopsy.

At or before the meeting with the urologist, obtain a copy of the pathology of your biopsy so you can review, have available for other specialists, and discuss here with suggestings for the next step in do things coordinately for the best outcome. We can help.

To date, what is the history of your PSA's. Any other tests such as a FREE PSA, What prompted you to first start having biopsies? What did the digital rectal exam(finger wave in anus) reveal?  Have you had any image tests, for example a T3 MRI that might show if there is extracapsular extension, that is if the cancer has escaped the prostate....this is an important test to evaluate an active treatment(s), if any or to simply monitor your disease with treatment in the future if required.

The biopsy presents a Gleason score, which lets you know the aggressiveness of the cancer, If you are not knowledgeable do a quick google of Gleason score so you will know what the urologist is talking about.

Ask the urologist to let you know the size of your prostate.

 

Steve1961
Posts: 249
Joined: Dec 2017

Thanks so much for the info...the finger in the butt he said it was slightly enlarged but nothing out of the ordinary he said. What prompted me to go I have been getting checked every year  for the past  5 or 6 years PSA levels that is  because my dad had prostrate cancer but did not die from it. So like I said before  I have had 2 biopsies over the last 5 or 6 years that came back negative .so my urologist just assumed I may have just naturally elevated PSA it was alway between 5:5 and 6 ..this time it went to 8 and this biopsy showed 2 cancer specimens our of the 12 he took. What upsets me is that is all he said besides that we caught it early and he suggested radiation and believes i can recover from this. He the referred me to an oncologist whom I see Thursday, but in the mean time I worried  sick. I think he caould have at least told me if it was benign or malignant .....at the time I was kinds in shock and failed to ask him that...thanks for all the support 

Steve1961
Posts: 249
Joined: Dec 2017

Oh I think my urologist should have told me the Gleason score now I’m thinking he didn’t because it was bad and he would let the specialist deal with it ...I am very upset...about all this...myGP seems to think he is great but I dint know now 

hotstox
Posts: 4
Joined: Mar 2018

If you had a biopsy, your gleason should be assessed right there on the report.  The last page of mine contains the final answer while the body of the report shows the results of each core taken.

 

Richard

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Simply contact your urologist office to obtain a copy of the pathology.....by looking at the Gleason score, the amount of involvement, that is the amount of cancer in each core that is posiive and any other pertinent information in the pathology report, you will have a better idea of where you currently stand, and what needs to be done as far as other diagnostic tests that will shed more light.

Please do not assume that the urologist kept a secret from you because he did not want to deal with it....these guys do this ten times a day.....simply contact the urologist office asap so you can eliminate worry time about not knowing what the pathology showed.

Prostate cancer is very slow growing, so you have time to research and make the best decision as far as trreatment , one that you are comfortable with and can live with. 

Remember you are CEO of your medical ondition and treatment. you need to be informed........these doctors are hired hands who work for you.

 

Steve1961
Posts: 249
Joined: Dec 2017

Thank you sooo much I will do that Monday at least I will know now wzy or another ...this forum isa Gods sent .i will let you know thanks again 

Tech70
Posts: 53
Joined: Nov 2017

A lot depends on the Gleason score of your positive biopsys and the percentage of the the sample that contained cancer.  If the Gleason is 6 and only two of the cores contain cancer, you could be a candidate for active surveillance.  At this point, research on your part is critical.  The NCCN has an excellent online, downloadable guide for prostate cancer patients.  Google it and download it.

I'm currently following an active surveillance protocol because in addiiton to avoiding the potential side effects of agressive treatment, the available technologies for addressing the disease are advancing rapidly.

 

Steve1961
Posts: 249
Joined: Dec 2017

wow You are the best ...trying hard not to panic lol it’s tough ...thanks again I will keep u informed because I am going to one of the success stories on this sight I am not giving in to this no way no how......

Steve1961
Posts: 249
Joined: Dec 2017

By the way apparently the specialist I am seeing only does prostrate cancer 16 years experience 

ASAdvocate
Posts: 116
Joined: Apr 2017

The best thing that you can do is not to yield to the mentality of "I have cancer, cut it out tomorrow". 

Prostate cancer is slow growing, and almost never requires immediate decisions. I was diagnosed in 2009, and my specialists at Johns Hopkins believe that monitoring, rather that any treatment, is my best course. They should know, as they pioneered active surveillance in the USA.

Get your biopsy pathology report, and share the data here (and elsewhere where knowledgable people can advise). Also, if you have a case that may require treatment, please speak with BOTH a urologist and a radiation oncologist. Both can eradicate cancer, but with different side effects. Do not allow one to speak for the other.

Good luck.

 

Steve1961
Posts: 249
Joined: Dec 2017

Thanks I have been to the urologist ..he is the one who now is referring me to the radiation oncologist who I see on Thursday.i am going to get a copy of the report on Monday to see for myself ....hope the findings r lowwwww....just sooo scared it has spread already...haberdashery had pressure and weird little stabbing pains arpinf my sinus and tail bond but I havre to admit it think that’s only been since the biopsy ...will keep the faith .thanks again for the help 

1005tanner
Posts: 29
Joined: Dec 2017

Get a second opinion with your pathology slides and look at your options. If you do surgery first you still can have radiation next if needed.

Or active survelleance is a option if gleason score is below 6. And your anxiety can handle it. Good luck my brother. Your age has alot to do with it also as some are slow growing and not as aggressive.

Old Salt
Posts: 720
Joined: Aug 2014

1. Gleason scores below 6 are not considered cancerous and are not reported.

2. Active surveillance (AS) protocols vary by institution. The number of tumors within the prostate and their location play an important role in determining whether a person migt be a good candidate for AS. This forum has several contributors who are more knowledgeable than me about this approach.

Steve1961
Posts: 249
Joined: Dec 2017

Wow thanks alot brothers.calling today to have the report sent to my GP and I will go see him to go over it..I trust him sooo much been with him 20 years...I am soo frightened that it had spread..I am still having some discomfort in my rectum from the biopsy which is only supposed to last a week or so and now has been 9 days...of course I am thinking the discomfort is the cancer spreading..trying soo hard to not think like that but it’s tough...will all oncologists do a bone scan to see if it’s spread or not ....sorry  for the ranting thanks again 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

The American Urological Association recommends a bone scan  for those with a Gleason 8 and above; not for those with Gleason under 8 unless there is a very large quantity.

 Recommend that you have a T3 MRI 

This is an MRI scan for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, may show evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet. 

In my layman’s opinion it is advisable to have such a test before any treatment. If the cancer is outside the prostate you may wish to reconsider a treatment decision.

Basically the MRI provides finer resolution than the bone and cat scans, and is more effective in determining if the cancer is outside the prostate.

Steve1961
Posts: 249
Joined: Dec 2017

Thank u very much

Steve1961
Posts: 249
Joined: Dec 2017

core 3 gleason 3+4 tumor size 7mm 80%length of biopsy

core6 gleason 3+4 tumor size9.5 mm 90 % lenght of biopsy

core 8 gleason 3+3 tumor size 2 mm 20 % length of biopsy

urologist recommends radition but my GP whom i have been with for 25 years suggestd removal..get it out and over with  he thinks is the most sure way..granted he is just a GP but he is very knowledgable...i think i will meet with both a radiologist and rbotic surgeon just not sure what questions to ask.......many thanks for all your help and guidence ...i will follow up all the y way with my journey...my doc did say take my time and find the right Dr..he says i should find one that has done the surgury at least 500 times...i am fortunate to have excellent facilities around me...i am in the san francisco bay area....UCSF  as well as Stanford......i am sure i will find  agreat surgeon ...or radiation oncologist

 

hotstox
Posts: 4
Joined: Mar 2018

I have a Gleason 4+4.  Surgery is on for Thursday, May 10...4 days from this writing.  I reached the surgery conclusion after considering a number of factors.  Since I am 71, there is some logic in having radiation but, since the cancer is encapsulated (not found outside the prostate), I could just do nothing and have perhaps 10 years of life.  Bone scan is clear.  But here's what tipped the scale for me.  Radiation is easier and less invasive but has an effect on surrounding organs.  If you have radiation, you may not be able to have surgery later since other organs may be fused together.  Obviously check with your Dr. on this.  Also, if you have radiation, you will be coming back every six months or so for a progress report.  I personally dont like that either.  I dont need more drama. By removing the prostate it seems you get a much more certain result earlier, granted possibly more recover time, but your PSA goes to zero.  If it ever becomes other than zero, the docs know they need to do other testing. But you have a very easy indicator that there could still be a problem since it will be part of a routing physical.

My PSA started out at 3.5 rose (over about 2 years) to 4.5.  My Internist said "lets check with a urologist".  Hats off to him on that because many of my friends (who happen to be docs) say they would not have concerned themselves at this point.  Now, since the cancer is encapsulated and bone scan negative, I believe it is the right decision to get this over with.  Stay tuned.  I'll let you know in 3 or 4 months. :)  Get other opinions and select a Dr. with a lot of experience in robotics.  If your town doesnt have a great facility, consider where else you might be able to go for the treatment.  Hi tech is super important.  ie. Laproscopic/robotic.

Keep cool and do your research.  Once you find out about the options you'll be more relaxed and optomistic. A good attitude is a real help.  Best of luck to all of you.

 

Richard

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

You are probably in excellent health (other than the PCa) to be undergoing RP at age 71. I hope everythign goes well for you. You make many good points throughout your post. My Urologist mentioned "salvage radiation" during our initial consultation, and required me to meet with a RO before proceding with surgery. RO's generally do not bring up the possibility of treatment failure. But I did learn after reading many online forums that PSA following RT bounces all over the place but never goes to zero. It just levels off somwhere and presumably the post treatment process is anything but reassuring. Granted, the primary radiation route has its benefits for those who choose it, but I for one required more certainty.

Good luck on Thursday!

scout10's picture
scout10
Posts: 2
Joined: May 2018

I was recently diganosed March 5, 2018. I have done a ton of reserach, talked to many patient friends, my urologist, a radiation oncologist, and robotic surgeon. June 14 I am getting robotic surgery. If you get radiation it burns the tissue and leaves scar tissue, and if the cancer returns you can not have robotic surgery. I have chosen surgery to get the prostate gland, seminal vesicles, and lymph nodes all removed. I have chosen a robotic surgeon who has done 700 surgeries, and also a top hospital here in Atlanta, Ga. You have to wait 8 weeks after a biopsy before you can have the surgery to allow the prostate gland to heal. I hope this helps, I wish you well, I know the anxiety stinks. Try to be strong, positive and a lot of prayers. Good Luck.

MK1965
Posts: 178
Joined: Jun 2016

Yes. You can have Salvage RP after Radiation. That info always comes from surgeons who are performing surgery and trying to scare patients away from Radiation which is in this time comparable shoulder to shoulder with surgery in regards to succes rate and recurrence. Procedure is riskier but many centers are offering it.

Here in Houston, It can be done at MDA. Recovery might take longer and SE might be more pronounced but they are anyway problem after RP even as a primary treatment.

MK

Steve1961
Posts: 249
Joined: Dec 2017

r u right u can hsve surgury after radiation it’s just more risk of ed and incontinance ..they do it here st UCSF 

Tech70
Posts: 53
Joined: Nov 2017

I would strongly suggest an MRI to determine if the tumor is contained in the prostate and possibly Oncotype DX genomic testing of the biopsy sample to determine how aggressive the cancer is.  Medicare covers Ocotype testing, but you're too young for that, so check with your insurance company first.   I think because of your age, most doctors will suggest some sort of active treatment. 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Well to be honest, your GP is not an expert about prostate cancer....in fact after you do your research, I expect that you will know a lot more about this beast than s/he does.

As mentioned above a T3 MRI is critical to determine if there is extracapsular extension and how extensive, that is if the cancer has escaped the capsule and will determine treatment.

I doubt if having a genomic test will affect your treatment decision.

Surgery is a localized treatment, removing the prostate only with great chance of side effects, while radiation treatment can adjusted the perimeter of radiation to be outside the prostate. In your case of intermediate disease, there is a good possiblity of the cancer being outside the prostate, so the perimeter of the radiaiton will need to be expanded with best chance of eliminating all of the cancer, (within the prostate and immediately outside the prostate).

Swingshift is one of our forum posters who lives in the San Francisco area who was treated at UCSF with a form of SBRT called Cyperknife and is best qualified to provide information about facilities in the area for you.

SBRT is given in five sessions or by some doctors four sessions with minimal side effects. Several at this forum have successful undergone this treatment and can give input.

Here is a nine year study about the success of SBRT and the results of treatments. You will note that there is a 89 percent chance of success for intermediate cancer.

https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

 

Steve1961
Posts: 249
Joined: Dec 2017

wow I thought I caught this thing early no wonder my dog gone urologist didnt say much....curious how do u determine early intermediate and advanced...I guess intermediate is still better than advanced ..also how do u tell if it’s slow or aggressive .i always heard if u have cancer this is the one to get because it’s so slow moving ...sorry just curious and scared...also seeing an oncologist Thursday that specializes in   radiation therapy and only men with prostrate cancer he treats for 17 years now.....hope he is good man will I have questions for him....I will  try not to panic I know we just have to make sure of everythinggggggg....I hope there is a chance it has not spread .....man I kick myself for accidentally skipping getting checked one year ...dog gone it 

Steve1961
Posts: 249
Joined: Dec 2017

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

 

 

Old Salt
Posts: 720
Joined: Aug 2014

Swingshiftworker

and he posts fairly often

1005tanner
Posts: 29
Joined: Dec 2017

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

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

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
Posts: 249
Joined: Dec 2017

old timers are the greatest

Steve1961
Posts: 249
Joined: Dec 2017

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

 

Old Salt
Posts: 720
Joined: Aug 2014

Your doctor is correct; you should be seeing a RADIATION oncologist.

fishinguy
Posts: 18
Joined: Dec 2017

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!

ASAdvocate
Posts: 116
Joined: Apr 2017

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
Posts: 249
Joined: Dec 2017

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 ....

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

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

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

ustoo.com is an organzation that sponsors local support groups worldwide. These groups can provide a wealth of information, especially about local treatments available, and emotional support. google them.

Steve....you are thinking too much about seeing doctors in various specialties. this is standard operation procedure. ...By the way UCSF is a hospital recognized world wide that has experts, "artists" if you may who treat prostate cancer. For radiation it is high volume, with expertise with facilities.

Steve1961
Posts: 249
Joined: Dec 2017

wby didn’t my urologist order an mri right away i am going to need one i would have had results already so upset over all this pissing me off sorry 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

 

Steve, Listen....you need to calm down.......things need to be done in a coordinated fashion.......the T3 MRI will be done at the right time, by the right institution....i.e.if you go to ucsf they will probably want to do their own.

 

Last week you didn't know what an MRI was, now your pissed without one......relax...have a glass or two of the California red....there's plenty of time, so you can do things right.

LOL

 

 

Steve1961
Posts: 249
Joined: Dec 2017

thanks for the confidence and all the knowledge ..I still have a lot to live for as we all do also have people that depend on me and I feel obligated to them .....I am going to nail this and I won’t leave this sight I will be an inspiration ...I owe that to all u wonderful knowledgabke people that have brought me some peace of mind  thanks again

Steve1961
Posts: 249
Joined: Dec 2017

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 

eonore
Posts: 50
Joined: Jun 2017

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.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Not a doctor, but I think the radiologist is full of it when he tells you that you do not need an MRI before any treatment. 

If you have, say surgery as the doctor suggested and the cancer is outside additional treatment(s) ..radiation/hormone will be necessary.... the side effects from each treatment is cummulative....since surgery is a localized treatment, it is very possible if the cancer is outside the prostate that you will still need radiation and/or hormone treatment.

I wonder , your medical coverage, are you with a HMO, and they are trying to save money on you? 

Does your medical insurance cover medical treatment at UCSF?, If so, go there, they do everything related to prostate cancer well. They are one of the best institutions in the country.

Steve1961
Posts: 249
Joined: Dec 2017

I have 2 insurances both ppo and yes I will be going to UCSF just waiting for them to look over my case and which dr is right for me..actually this radiologist did say an MRI would be very helpful but they would still do surgery unless it has spread a lot so maybe since he isn’t the surgeon he couldn’t prescribe one...I don’t know ...I wonder if my urologist could prescribe one an MRI that is  so I don’t waste any more time maybe I should ask him...thanks again everyone 

Steve1961
Posts: 249
Joined: Dec 2017

also I asked him if he thought that since my PSA was5.5 for around 5  6 years If it’s possibke I have been walking around with cancer.answer was probably yes but since nothing showed up on biopsy nothing can be done ....wow I guess if we all knew this had this knowledge and are filthy rich and could pay for ut yourself but that’s not me...but even if they told us  there is a good chance that down the line this may turn to cancer ..sure may cause anxiety but one could start eating better and taking better care of oneself ...just a thought 

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Steve, I get the feelings of panic and fear.  And we have time to make an informed decision.  Read, study, ask questions, seek second and third opinions.  I was convinced I was going to do surgery and have changed that to HDR Brachytherapy.  Learn about the different treatment options, the risks, the side effects, and the post-op recovery period.  Once you have all that info solid in your mind the choice will become evident.  Only you can and should make the decision. I am almost six months from diagnosis and just made my decision a couple of weeks ago.  My treatment starts in January.  

You have time to learn about our disease and learning will help you understand your path.  Denis

Steve1961
Posts: 249
Joined: Dec 2017

thanks and sorry jusr kicking myself for skipping a year I would have been stage 1 rather than 2  that’s all thanks I will just pray that it was still contained .... that’s all I can do for now 

fishinguy
Posts: 18
Joined: Dec 2017

You and I are tracking pretty much the same as what I've read from you.  I even skipped a year in my PSA screening.   I was born in 1961 as well.   PSA originaly high when I was 51, five years ago.   I most likely had my 3+4 for a couple years prior to that,   So 7 years I'm thinking at least.   I did have surgery, and my PCa was contained.  I tell you this because there is a good chance it is contained for you as well.  Also a 3T MRI eluded to that prior.    My MRI was prior to my biopsy, used to help locate it.   I'm not sure if the insurance companies care if the MRI is prior or post PCa detection.   Maybe others know, you should ask.

Heed the advice of those here.   Take some time now to research your options and pick the one that's right for you after you have learned of them. Don't get too focused on surgery immediately.  Really look at options equally now.  It may seem like it's taking forever to make a decision, but when you look back in a year, a couple months to research will seem like a blink of an eye in retrospect.   Everything you are doing now is in a heightened state, you can slow it down.  Tell yourself over and over, "I will be fine".   Because you will be.

Take care - Dan

Steve1961
Posts: 249
Joined: Dec 2017

Thanks for the advice let’s have a virtual beer one night 

fishinguy
Posts: 18
Joined: Dec 2017

Sure thing....

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