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Gleason 9 PSA 26 day 1

fightn9er
Posts: 13
Joined: Aug 2012

Gleason 9 PSA 26 day 1

Submitted by fightn9er on Fri, 08/17/2012 - 6:28pm

Hi Im Mike (53yrs) and this is day 1 of my fight for survival. My biopsy was 3 days ago and the results came in yesterday. Yep Im a 9er (4+5). The DR. wants to wait 6-8 week to let my prostate calm down before "the plan". Had 12 cores taken. All were positive with the lowest score 3-4. The biopsy also showed an area of pc that was just outside the capsule. I will be getting a bone scan and CT scan as soon as possible. If they are negitive the Dr.s "plan" is as follows: Radical Prostatectomy with some debulking as necessary via the da Vinci method of which he has performed over 900 times. Followed with radation theropy. When the psa strats rising then we will start Hormone theropy. So thats "the plan" from the Dr. awaiting my approval. Day 1 is getting pretty F*#@%# tuff. I need more information. From what I have read and been told there is potiential to still be around 10 years + . My faith is very strong and I am not fearing death as much as leaving loved ones. I have 3 grandchildren under the age of 2. I will FIGHT this.

derom_99
Posts: 6
Joined: Jun 2012

Be sure to check out all treatments available. I had robotic radical prostatectomy and very good results with just minimal discomfort and back to work very quickly. Check out MD Anderson and John Hopkins web sites for info on all treatments available to you. Always get a second opinion good luck and prayers to you during this difficult time.

derom_99
Posts: 6
Joined: Jun 2012
derom_99
Posts: 6
Joined: Jun 2012
derom_99
Posts: 6
Joined: Jun 2012
Samsungtech1
Posts: 350
Joined: Jan 2011

I had the exact same scenario. They took out the prostate, had 37 radiation treatments for bladder, and it had metastiicized to lungs.
If you know that it has spread then I think they need to go ahead. Nothing in there can be saved. Sorry. They have to take everything . Sex is gone. Unfortunately you have to make the big decision. Make sure that they have tested everything.

Hopefully they can slow the spread. They made the nodules in lungs disappear. As young as you are your body should bounce back quickly. Not sure about your dietary habits, and fitness but they are your primary factors to extend your life..

I wish you well. Good luck,

Mike

hopeful and opt...
Posts: 1293
Joined: Apr 2009

It is very good that you are a fighter, a warrior. It is very important to fight smart.

There are a lot smarter and more knowledgeable people than me that post here that can give you great advise

The key thing that I would like to emphasize to you is to find the "best" that you can, make a good researched decision and do not jump at any treatment. You want to do this right.

With your number I suggest that want to have a medical oncologist who specializes in prostate cancer, ther are only about 50 of these people in the united states) to lead your medical team, since in my opinion it is all based on hormone therapy.

If the cancer is outside the prostate, I wonder why you would have surgery and suffer the possible side of ed and incontinence. When you do more than one modality for treatment you suffer side effects of each treatment type.

Here are two recent threads from others with the same numbers as you that you may wish to read.
http://csn.cancer.org/node/243848

http://csn.cancer.org/node/243879

Take a deep breathe, keep busy, but don't panic....and you will win this fight.

hunter49
Posts: 200
Joined: Oct 2011

Hi Mike
Sorry to hear about your PC diagnosis. I got it last year at 49 and had an RP. I was all contained and at diagnisis it appeared to be that way so I chose an RP via robotic. However, yours is outside the gland and I would not have done surgery if I was that way. You should really reconsider and get a second opinion at Hopkins or Sloan. It really does not have a better cure rate once it spread to do surgery. Good luck and keep the fight up always.

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

Mike,

I'm very sorry to read of your diagnosis. The Gleason 9 report is very serious, as you realize, and the tumor pushing through the prostate capsule is another ominous indicator. I think you're smart to start researching your options and gathering the weapons necessary to fight this disease.

I'm a little confused about the "debulking" comment in your post in the context of radical prostatectomy but no matter. It sounds as if your urologist is opting for an aggressive approach.

I've read studies that indicate RP followed by radiation in cases of locally advanced prostate cancer show about a 50% rate of non recurrence at the five year point. I may be off on my statistics so I suggest you Google advanced PCa and RP to get an idea of the literature out there. The key to all of this is the adjective "local" which means metastasis has not occurred. Many times with very high Gleason scores and extra prostatic extension (that bulge you refer to) are indicators that the cancer may have metastasized beyond the prostate. A CT and bone scan may not show metastasis unless it is a relatively large tumor so I would ask your doctor to refer you to some more advanced imaging techniques. The thing that I think is in your favor here is that at your young age it is pretty rare to see significant metastasis at this point. The cancer simply hasn't enough time to spread but with this disease there are many uncertainties.

I strongly suggest you seek some second opinions on the treatment approach. Your doctor should have explained to you the likely side effects of the procedure he is recommending. Most likely he will not be doing "nerve sparing" surgery given the extent of your diagnosis and he will also be removing lymph nodes and seminal vesicles. This means that you will not be able to achieve a normal erection following surgery. There are other ways to get an erection (such as penile injections or an implanted device) but you need to understand the pros and cons of the entire package and how much of your quality of life is likely to change. There is also a good chance that you're going to be incontinent following surgery. This may improve over time but at least initially, depending on how wide a margin the surgeon has to do, you're going to have some issues here. It may be permanent.

An alternative to the surgical approach is radiation and a radiation oncologist can let you know if this is a viable option for you but you won't know that unless you go through the consultations. An oncologist may also recommend not waiting for the start of hormone treatment but want to get you going on it as soon as possible. Typically, radiation poses much less risk of ED and incontinence although every treatment option carries risk in these areas.

I hope you meet with these different specialists so that you can gain a full appreciation of the treatment options available to you and the possible side effects. You won't get a second chance to make a decision so make sure your eyes are wide open.

As Hopeful and Optimistic pointed out, if there is evidence of metastasis, removing the prostate will not do anything to curb the spread of cancer outside the prostate gland. It is not cancer in the prostate that kills us. It is the prostate cancer that spreads to the bones and other organs that is fatal. Why risk suffering the side effects associated with surgery if it is not going to slow cancer growth elsewhere?

You've just begun your battle. Continue to gather information and be your own advocate. A successful treatment plan implies a partnership between the patient and his medical team and your responsibility in this is to be an informed patient.

Best of luck to you as you go forward.

K

shadowman
Posts: 16
Joined: Nov 2011

I am also a Gleason 9 diagnosed last December My surgeon does not like to operate when it is outside the capsule so I went to an oncologist and based on my numbers I wasput on Hormone treatments then had 45 radiation treatments He is recommending I stay on Hormones for 2 years My last PSA was 0.14 I had no side effects with radiation and other than the Hot flashes and no sex drive from the hormones I feel pretty good I am getting a trelstar shot every 6 months

fightn9er
Posts: 13
Joined: Aug 2012

To all

Thank you for your posts, they have been very helpful. It is hard to believe the amount of information I have been learning My family is having a hard time with my growing vocabulary. Until I can find a better reason than a 33% chance that the RP will irradicate all the PCa I am leaning toward the RT and Hormone theropy. The 33% number was learned thru Dr. Patrick Walsh's Guide to Surviving PCa. There are lot of charts that were used by inputing my numbers, age, etc.. My Dr. mentioned the word "volisity" during my biopsy and I forgot to ask him about it and am having trouble finding a definition as it relates to us. I am also looking into a second opinion. Knowledge is our weapon in this battle. Day 2 has been another tuff one. But Im fightn harder than yesterday.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

..however please pace yourself and enjoy positive moments as you can.

there is a test using an MRI with a powerful magnet 1.5 or for better definition a 3.0 tesla that will show suspicious lesions within the prostate as well as outside the prostate to show extracapsular extension....if the cancer is outside the capsule. There is another test that is given at the same time that helps define the clarity of the images, this is a spectroscopy. Now the spectroscopy is not covered by medical insurance since it is considered investigational, however in my laymans opinion it is an important test to have.
I believe that you should have these tests by personel that know what they are doing, ie a major medical center of excellence.

I don't know where you live, but say, if you go to M.D. Anderson, a very renoun center of excellence for this, you would want to have them do it, and see one of their medical oncologists. Of course I am a lay person, and defer to these doctors with the fancy degrees...these are the ones who graduated at the top of the medical schools, not the ones who are out there who graduated at the bottom of the classes.

ps If the cancer is outside the prostate, the cancer will not be irradicated, the 33 percent is a general statement applying to men. As I recall the results of your biopsy indicate that it excaped( so thinking some more, you may not need the mri with spectroscopy).

fightn9er
Posts: 13
Joined: Aug 2012

My biopsy path report has identified "Extra prostatic extension" as well as "Perineural invasion" So it appears that the monster has excaped. Should this make the MRI with Spectroscopy test any less important?

Mike

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I think that you might want to see how far the cancer has gone....there is a test uspio which if I am not mistaken looks at the lymph nodes. This may help you make a decision. The test is done by a physican in Fl., I think Dr. Datelli. He only accepts referral from Dr. "Snuffy" Myers of Virgina....who is a prominent medical oncologist who treats advanced cases of this disease....some think is the best.

There are major medical centers who have a similar test to test this(I don't know the name but they will.

ps http://csn.cancer.org/node/227353 –

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laserlight
Posts: 165
Joined: May 2012

At this point in time do your research on treatment methods. This is cancer, but there are a number of treatment methods available. Ask a lot of questions of the doctors, have them explain all the treatment methods. The important thing is to make sure that you are not under treated or over treated. Try and stay focused on this, it would be help full to take another family member to the doctors visits. My wife was very good at this. Also it might be good to start to research diet modifications. This cancer needs to be treated. Welcome to the club no one wants to join. Everybody on this site has good input, so take yur time and go thru it. I was at stage T2C when surgery was performed, 18 biopsy samples taken all came back with cancer, 9 of them had 60 percent cancer cells. Good luck and hang in there

Kurt

mrspjd
Posts: 688
Joined: Apr 2010

Hi Mike,

Welcome here. Sorry to read of your G9 dx but glad you’ve got that fightin’ 9r spirit and positive attitude. That's what counts.

I think you may be referring to “velocity.” Here’s an informative article by Dr. Stephen B. Strum on PSA velocity (PSAV) and PSA doubling time (PSADT), among other things, that might answer some of your questions:
http://www.prostate-cancer.org/pcricms/node/119
Dr. Strum is a well known and respected PCa oncologist. He is also the author of an excellent book on PCa.

I’m not sure I understand your statement: “My biopsy path report has identified ‘Extra prostatic extension’ as well as ‘Perineural invasion.’” My husband’s bx (biopsy) reports, both the initial report and the expert 2nd opinion pathology specimen report from Johhs-Hopkins, indicated and confirmed Perineural Invasion (PNI). When PNI is identified on bx, it indicates that ECE (Extra Capsular/Prostatic Extension) may be more likely, not necessarily that ECE is present. In his case, ECE was confirmed with add’l diagnostic tests including an EMRI (Tesla 3) and a color doppler ultrasound (CDU). What I don’t understand is how your prostate core biopsy could determine Extra Capsular/Prostatic Extension. I wonder if it’s possible that you also had a lymph node biopsy. Perhaps you might clarify that bit of info.

Re EMRI with spec. using Tesla 3 technology: if you’ve had a lymph node bx, and it was positive for PCa, then an EMRI is not indicated, IMHO, since ECE has already been established. However, if bone scan and pelvic CT are negative, further diagnostic testing such as an F18 PET/CT or a C11 Choline (see below) would be indicated. They may determine if there are distal mets, such as to soft tissue or bone. The info you obtain from these tests may be important to consider when evaluating which tx options have the best outcome with the least amount of short and long term side effects based on your PCa Tumor staging.

As for the Feraheme (USPIO) contrast agent with MRI being used in Florida: it’s considered experimental, being used off label, and is not covered by insurance. IMHO, its limitations are that it identifies metastasis in lymph nodes only and only when there is significant mets. An F-18 PET/CT may be a better diagnostic tool for detecting advanced PCa mets and is covered by Medicare and most insurance if under age 65, as you are. A newer imaging test, considered experimental and only offered in a few locations nationwide is the C11 Choline. It’s not covered by insurance but there may be one open trial. If interested, you may wish to search the PCRI website for more info. You may also be interested in watching Dr. Kwon’s presentation (from last years PCRI conference) discussing his use of C11 Choline imaging and systemic vs focal PCa mets, including soft tissue and bone mets. Here’s that url: http://askdrbarken.wordpress.com/2011/12/25/c-11-choline-petct-scan-dr-eugene-kwon-mayo-clinic/

Good luck and best wishes as your journey begins.

mrs pjd
wife of a PCa survivor, T3 stage

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VascodaGama
Posts: 1528
Joined: Nov 2010

fightin’ 9r spirit

I am sorry for your diagnosis. Your case is at high risk for aggressive metastases. This means that you may be confronting a systemic status. Such can be verified with due testing and image studies (upper and lower abdomen).
Being systemic classifies you in the stage IV to which radicals are irrelevant. In fact, based on your posted information, surgery would not cure you or treat the wound. It would be done with the sole intent of debulking, which performance would address only the volume of cancer in the gland. In such view, RT of the pelvic is always required but RT alone could cover the cancer at the gland and pelvis in one setting.

Because of your young age doctors recommend radical treatments (RP or RT) with intent at cure, however, cure are most of the times an ambiguous theory because there is no practical way that assures us of getting rid of the cancer completely, and one is subject of losing the quality of life considerably.
Young patients in particular got lot to lose so that one must consider the risks and side effects as an important parameter when choosing/deciding on a treatment. Some side effects are prevalent and become permanent. You need to know about them in advance. There may be things that one would not want to lose or trade.
Get details googling this sentence “side effects of treatments for prostate cancer”.

I am a survivor of twelve years with failed radicals (RP and RT). My initial diagnoses were better than yours but the preferences of testing and treatment at my times were nasty in terms of outcomes. Today you got better options in choices both in testing and treatments. Those prediction tools (nomograms) you are comparing with are done with basis on past experiences (my times included) when treatments were executed differently. You can expect better outcomes now.

I recommend you to look for the best in regards to facilities, physicians and care givers.
You have enough time to research and become educated with PCa before deciding. Cancer does not spread overnight.
Remember that a proper diagnosis (and second opinions in all fields) can lead you to better outcomes from the treatments.

Wishing you the best in your journey.

VGama

mrspjd
Posts: 688
Joined: Apr 2010

High risk PCa can be identified as either focal or systemic. IMO, it's important for the patient to understand the difference, and for the treating MD to differentiate. Not all G 8, 9, & 10s are systemic just as not all G6 & 7s are necessarily low risk. My husband’s PCa case is a good example. He’s a high risk G7 due to many of the features of his cancer at dx, and which add'l testing confirmed. His T3 staging is not categorized as systemic, but rather focal and locally advanced, as there is no evidence of disease in the LN's or distally. IMHO, Mike, working with his treating doctors, would best be served by understanding the location and extent of his disease, & by utilizing add'l diagnostic testing as I previously suggested. With the limited info Mike has provided about his bx stats, PSA history, etc, and with imaging tests/results yet to come, there are still many unknowns. It's best not to put the cart before the horse, so to speak, until more info is known. Of course, the risk for systemic disease is higher but unfortunately, no current testing will identify micromets--in high risk or lower risk cases. We personally know several men through face to face PCa networking groups that are G9s without evidence of systemic disease.

fightn9er
Posts: 13
Joined: Aug 2012

To all

Bone scan and CT scan scheduled for Friday 8-24. Second opinion scheduled for 9-4. Also scheduled on 9-4 is a PCa dietary specialist. Good thing I like tomatoes. It’s been a long 5 days. I can’t seem to read fast enough. Just a little overwhelmed. I will make a point to talk to the dietary specialist regarding supplements in case there is something new. Does anyone have any questions they would like me to ask this PCa Dietary Specialist?? I have just received Dr. Peter Scardino’s “Prostate Book". "Oh my" it is as thick as Dr. Walsh's bible. During the last 5 days I have saturated myself in a world of knowledge about this and have left my loving family in the dust. I have found this board so informative for myself. Is there a website or a board for our loving and supportive family members to share their issues, similar to this board? (Preferably not a whining site)

KTF I will fight
Mike

hopeful and opt...
Posts: 1293
Joined: Apr 2009

There are various local support groups , basically the patient and loved one, usually a wife show up. Each group is different. Most that I go to are knowledge based, but some are emotional based. Sometimes at some support groups the woman have a separate led discussion.
There are various national organizations that sponsor these group, one major one is USTOO.org You can go to their websit and find a group near you. You can also check the internet for other groups near you. Did you say where you live? If you post your location others may be able to direct you to a group.

Suggest that you view a recent thread great news for information about diet. Basically heart healthy is prostate healthy. by the way tomato sauce is supposed to be more concentrated than tomatoes.

caseyh
Posts: 63
Joined: May 2002

It should be noted that Feraheme is being used in place of Ferumoxtran-10 which was used as
early as 1999. The MRI results using Feraheme are as good or better than its predecessor.
Feraheme enhanced scans can pick up metastases in lymph nodes well below the size limitations of standard scans, allowing early detection and targeted intervention. The Feraheme scan is used in conjunction with an F18 Pet Bone Scan, & CT Scans with & without contrast.

Rangertug
Posts: 2
Joined: Aug 2012

Mike, I am sorry you have joined our club, ideally we would have no members but this is not to be. I have Gleason 9 PSA 254 at diagnosis in July 2010, I am 68 now. I would get a second opinion and even a third if you are not sure/ confident of the opinions. I was advised that surgery was a waste of time and the side effects are a challenge. My treatment has been HT and so far that is all. My PSA slowly went down, not low enough but did go down and then seesawed up and down to 5.1, I joined a clinical trial "prevail" of MDV3100 in December 2011. This has been a miracle in my case, my CT and bone scans of a couple months ago has shown a retraction of the metastized pc in my bones.
Please do not give up hope, educate yourself before your next doctors visit , take someone with you to take notes, take a list of questions because if you are like me you forget what they tell you, you forget what to ask and it good to have someone to listen as well. Ask about the options and ask about the possible side effects. Don't be afraid to ask if you don't understand what the doc is telling you. I was overawed at the beginning and was in total shock and a daze, I knew absolutely nothing about PC. And the treatments etc.
There are a number of new drugs just coming onto the market or in stage 3 trials which are all showing good prospects for us.
Also ask for a copy of every test you have had performed, blood tests, ct scan results, etc etc, start a "diary" keeping a record of your tests and results in chronological order because if you need to go to another specialist you have an easy to read medical record.
Good luck

roncouch
Posts: 6
Joined: Aug 2012

Hi Mike,

I got you beat with a Gleason 5+5 (10) a couple of weeks ago.

I know it's a frightening situation, and I pray for good results for all of us. I'm 74, and thought I was in great health until a routine blood test showed the alkaline phosphatase high. That led to a bone scan, ct scan, prostate biopsy and the meeting with my medical oncologist. The PSA had jumped from 0.2 to 2.4 which sounds great, but the doctor said not so as it was a rapid increase. Anyway, my prostate cancer has spread to the bone - wide spread, and will be getting another ct scan to see if I need to have the neck of the hip bone pinned.

The plan is to radiate the area (hip) most damaged and start on hormone therapy. I recently started taking 50 mg of Bicalutamide (hormone therapy) and as soon as Medicare approves it, will start on an injectable hormone therapy. One to build up the bones - the other to slow down the cancerous cell growth. I have some pain, but easily controlled with an occasional pain pill.

There is no plan to remove my prostate.

The tools are technology, faith, prayers, knowledge and a positive attitide. The medical folks have come a long way in just that past couple of years.

Please keep in touch and I will do the same.

Ron

dwhite1031
Posts: 26
Joined: Jul 2012

Hello Mike, pleasure to meet you. I too am a Gleason 9, was diagnosed 7-13-12, and after receiving treatment options locally, we decided to go to MD Anderson Cancer Center in Houston, TX.
They are one of the leading cancer treatment and research hospitals in the world, and we are very glad we made the choice to go there.

You can read more about my particular PCa situation here: http://csn.cancer.org/node/243848

You will find a lot of information here and the folks that share their experiences with you are just absolutely awesome!

Most have been or are currently on the same journey you are now on, or are a caregiver for a PCa club member.

Prayers and blessings your way as you fight along with us and we with you!

Doug

Samsungtech1
Posts: 350
Joined: Jan 2011

We all have opinions and one of us might be right. You have to make that decision. Unfortunately it is a fear based, worse case based option. Breathe and see exactly what is going on. We all have made, or are making life decisions. Take a deep breath and clear your head. With a 9 you are up there with all of us. I chose to cut it out and go with radiation treament to bladder. Others have used seed implants. VA says I should only live 2.88 years. Stats say 5 max. Yet there are plenty of men on this site who have lived longer. Flip of a coin to see what side you end up on, but Dr. Myers prostate cancer book. With diet and exercise will help you tremendously. Life style changes help prolong all the good things. Do not jump to any treatment because of a friend, etc. Use knowledge and research to guide you.

Good luck,

Mile

jmikew
Posts: 9
Joined: Jul 2012

I really wish there were no new members to this site or to the "club"...sorry to hear about your pc and wish you the best...I would agree with going to md anderson as that is where I got my treatment and they are amazing!...I had surgery but wouldn't do it if I knew it was outside the gland as the surgery is a whip and my doc said it wouldn't do any good if they knew it had advanced...wish you all the best.

Bluey
Posts: 2
Joined: Sep 2012

Hi Mike, All previous posts are on the ball. I'm Australian & Aussie based. Treatments may be slightly different over here. I am 75 years old & have been having PSA checks for last 30 years or so, due to family history of cancer. Within 3 months my PSA jumped from 2.5 to 5.6. I elected to have the 3d MRI which showed an enlarged prostate with a rear lesion and suspected invasion into both seminal vests. My scores were on 3rd June a Gleason 5 + 4 = 9, and PSA was 5.6 prior to female hormone Zoladex implant, then on 08/08/12 the PSA reading was 0.17. That day the urologist planted 4 gold seeds in prostrate. Started Radiotherapy on 27th August. Now into my 4th week, prognosis is another 4 weeks or so RT with Zoladex implants every 3 months for the next 30 – 40 months. Dr advise is get ultra fit, drink lots of water, take Selenium, Calcium & Vitamin D, lots of rest, a positive attitude including meditation helps nervous system, memory & the subconscious, I find the latter is my problem, it just will not let me get into deep sleep. Wife is very understanding and realizes fully what I am going through. My side effects are: Bad sleep patterns, lack of energy, no libido, Low Haemoglobin count down to 123, memory plays tricks, bad nerves (all fingernails chewed), increased belly (3 inches), not my normal self. Dr states I must realize that the effects are similar to female puberty, and I must understand I am sick ( I don’t feel sick). So, with my wife’s help I work out at the gym 5 days a week. The gym owner who is my P.T. gives me free training to help me over my problem (he is great). I have a close friend who is 12 months ahead of me plus a cousin who is a month behind me both with prostrate so we talk things over & help with prayer & consideration. Mentoring like this web page is a great help. We have to be fighters. I don't have the "BIG C" I have a prostrate problem. I am alive, fit,with great people caring for me. My problem is defeatable No pity me's please.

All the very best. Keep us posted, Cheers, Bluey

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