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gleason score of 9

norwood
Posts: 1
Joined: May 2010

I have a gleason score of 9 with a psa of 69. Does anyone else have a gleason score this high and what treatment route have you taken?

MITCH 55's picture
MITCH 55
Posts: 7
Joined: May 2011

I am 74 years old and have a 9 Gleason score. I am on hormone therapy and had my first shot about 6 weeks ago. The only side effects that I have experienced so far are frequent hot flashes and night sweats. I don't like the hot flashes but feel it is a small price to pay if it works. It is supposed to have the same effect as having the testicles removed...stop the testesterone to stop the growth of the cancer.
Good luck with whatever treatment is chosen.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Mitch55

Welcome to the ADT environment. You will find it easier to survive those side effects if you get involved in a fitness program and change some habits.
Physical exercise (daily walks of 8 Km) is behind the success of experiencing mild symptomsin my case.
Diet is also an important aspect in ADT, and you may need to look for supplements that your body will miss once in low levels of testosterone.

Bone loss is probably the most danger effect directly connected to ADT. You should discuss with your doctor about the role of having a bisphosphonate.
I also recommend you to get a bone density scan done now to serve you as a base-line for your future tests, and to have your testosterone levels checked together with the PSA to ascertain the effectiveness of the drugs. A high PSA in a low testosterone level could indicate the need of changing drugs or the need in increasing its potency (mg).
A good “bible” for patients in ADT, which informs on everything, one should know about hormone treatment, side effects and how to handle the symptoms, is the book “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

Could you share info on the protocol of your ADT?

Wishing you the best.
VGama

MITCH 55's picture
MITCH 55
Posts: 7
Joined: May 2011

VGamma,

What do you mean by protocol? I am to receive a hormone shot every 112 days. Have had my first shot and will get the next one in September. Have had weight gain and hot flashes both of which are tolerable. Feel good and still active. Taking calcium tablets for the bones...I think is called CitraCal. Have not had a bone density test but will ask my physician about it.
I am thinking positive thoughts and doing some extra praying for all of us.

Oh yes, my regular physician prescribed Prozac to help with the hot flashes...haven't seen any difference yet.

Mitch

MITCH 55's picture
MITCH 55
Posts: 7
Joined: May 2011

Avidity,
So far the hormone therapy has been a piece of cake. Frequent hot flashes and some weight gain but otherwise feeling good and hoping that it is working. Have only had one shot so far...get one every 112 days. Someone mentioned that the dosage may be reduced after the first year or so. Maybe that depends on PSA...last PSA was 4 which is in the "normal" range. Go figure.

Good luck and Keep The Faith

Mitch

Rake
Posts: 2
Joined: Jul 2011

Wow! Just discovered this site. Glad to find a place to communicate with others about this disease. I was wondering if there are others out there with aggressive and advanced PCa (i.e. Gleason 9, T3b,N1,M0) who are athletes and undergoing ADT. I had to quit after 9 months as muscle loss, fat gain, osteopenia, hot flashes, emotional roller coaster etc., etc. were just hammering my quality of life. I've been off the "anti-juice" for 45 days and and slowly feeling better each day. Hopefully PSA is not rising. Got my fingers crossed for the next visit.

My PCa history is as follows:

1) I had a biopsy in March 2010 and results showed Gleason score 9 (5+4) with up to 95% in at least one of the samples

2) Had prostatectomy and lymph node dissection on May 15th 2010 with pathology showing 4 of 18 positive lymph nodes and extensive bilateral seminal vesicle invasion and clean margins.

3) Started ADT total blockade on 9/1/10 with Zoladex and Casodex after PSA never went to zero after RP and had a PSADT of 2 months.

4) Had 8 weeks RT to pelvic region Dec 2010 to Jan 2011

5) PSA and Testosterone in Dec, Feb, Mar, Jun measured undetectable

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Rake

You seem to have a type of very aggressive cancer. Gleason grade of 5 is the highest but the extent of the cancer spread is the matter to concern with. Have you done any image study?
There are Gleason score 9 guys doing ok for many years. Tackling the bandit the soonest gives a chance to stop its advance. I assume that you have been managing your case exactly with that intent for the series of treatments done since March of 2010, and you done it successfully.

ADT can give nasty symptoms to which many find it difficult to sustain. Nevertheless hormonal treatment gives to many a “Hope” in the control of PCa advancement, and for some it is the only way.
The great news for those on ADT is that ASCO has included in their guidelines the intermittent modality for hormonal application with cycles over the one year.
From a 15 year study it was revealed that Intermittent is good as that of Continuous in terms of survival. For those relying on ADT this means that they will enjoy a drug-free (vacations) period and a relief from the side effects.

Hopefully you have become cancer free, but at least you know that directly caused side effects from ADT would not affect your love for “athletes”, in case of needs. There are also newer drugs to combat cancer advance with lesser side effects.

Welcome to the board.

VGama

Rake
Posts: 2
Joined: Jul 2011

Thanks VGama!

I really appreciate hearing that G.S. 9 guys can do well for years. The Docs and studies I've seen for folks in my boat seem to be rather pessimistic.

Initially in March of 2010 I had CT and bone scan and repeated in Dec 2010 and all were negative Yeah!

As mentioned, I decided to discontinue total blockade on June 15th 2011. Been feeling significantly better ever since. Much less fatigue and mental clarity is returning. Now I'm trying to regain fitness and lose some nasty fat! I still having a lot of trouble regaining aerobic capacity. Can't seem to push like I used to. Feels like I have a governor on my engine and that my heart muscle has been adversely affected. Now that I'm pushing hard to regain at least some of my athlete status, is there any concern that I may be at increased risk of heart attack in the process? Could 9 months of total blockade have led to adverse heart muscle deterioration? Very curious about this and would love to hear from anyone else who could shine any light on this. I have found nothing in the literature about ADT and affect on athletes (particularly aerobic sports).

Had PSA and Testosterone checked last week, PSA <.1, Testosterone <3. Was amazed how well I was feeling considering low T. I'm beginning to think the effects I was experiencing were more due to the drugs than the decrease in Testosterone. Anybody else experience this?

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VascodaGama
Posts: 1588
Joined: Nov 2010

Rake

Zoladex half-life is taken usually as 14 days. This added to the depot’s effectiveness period (1,2,3,6 months ??) plus the time your body requires to start producing natural LHRH, is the time it takes to start seeing an increase in T levels.
However, the faster wellbeing you are experiencing may be due to the withdrawing of Casodex. This drug main function is to “prohibit” the testosterone from bidding to the cells receptors (benign and cancerous); and it has a half-life of 5 days. The results are a quicker back-to-normal feeling. Unfortunately that also means that any cancer that has not been killed in IMRT, would be feeding on T.
The PSA will tell you in the long term about IMRT’s success as well as if you need in future another cycle of ADT.

ADT is a risk for heart attacks but such is rare and it is usually seen on cases of long term (over 4 years) use of the drugs. This seems to be a cause for the low testosterone that is linked directly to an increase in cholesterol. Heart muscle deterioration was never commented as a side effect from ADT.

I would recommend you to include in your next annual health check-up a bone density scan to verify for osteopenia/osteoporosis (bone loss) and a cardiac test (ECG and echocardiogram). Both tests are follow-ups of your treatment. Your athlete’s daily physical exercises are excellent in the fight of treatment’s side effects and in the fight of the bandit.

I am on ADT since Nov2010 after the failure of radical treatments in my eleven years of fight. In my cancer care program, I include daily walks of 8 Km and other active fitness “doings” as tendering my garden and playing golf on week-ends. This activity is behind my experiencing mild side effects.
I do take a MRI (CT) and a Bone Scintigraphy every two years, and now I have included a bone density scan and echocardiogram. PSA and T are done every three months (because I am on ADT), and PAP and Lipids annually.
Diet seems to have an important role in my fight and so it is the added supplements I take on On/Off periods (E + Selenium + Aspirin). Vitamin D is important and it should be checked in particular by guys living in northern countries (lesser sunshine).

Wishing you a continuous good recovery and successful results.

VGama

hopeful and opt...
Posts: 1351
Joined: Apr 2009

In the large clinical study, SELECT indicated that E and Selenium supplements were not effective to prevent prostate cancer at a 200mg dose(selenium) and in fact may have increased the risk of type two diabetis.
Another recent study mahy have shown a benefit from smaller amounts of selenium in foods.
(Source:Promoting Welleness for Prostate Patients....mark moyad, md,mph

Not smokers need only 15-30mg of natual or synthetic vitamin e to nornalize their blood levels. smokers need slightly more (source: also dr moyad)

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Mitch55

Hormonal treatment causes side effects that in some became unbearable. You and I are of the lucky group with mild symptoms. I started ADT in Nov.2010. So far I have experienced a large “quantity” of side effects but relatively mild.
As I progress in the treatment I expect to get more of the “staff” and probably in the future I will get a nasty one.

My question on the ADT protocol was to know what has your doctor reserved to you. Reading your post it all indicates that you are in the right truck. Positiveness is a must.

Just for information to you and other guys reading this thread, depending on the status of each one, doctors usually recommend ADT which may address to a Total Blockade of “testosterone feeding” to the cancer. This refers to three possible ways that cancer has in which to “feed” and survive.
These blockades are done with three drugs. ADT(1) is considered a single blockade (your case) using a LHRH agonist shot to stop production of testosterone (T) at the testis (chemical castration). Approximately 95% of T is produced there.
Adrenal glands produce almost all of the rest of T circulating in our body. We could dissect the glands but, we need them for other functions so the second blockade (ADT2) is done at the cells receptors (mouths) using an antiagonist drug which attaches itself to those receptors (closing cancer’s mouths) prohibiting the feeding. Some doctors still use a third protocol named Total Androgen Deprivation Therapy (ADT3) with a 5-alfa reductase inhibitor that has the purposes of blocking the transformation/factory of normal testosterone into a 5-fold powerful form of “refined” T called Dihydrotestosterone (DHT).

These protocols can be applied from the very start on single, double and triple blockade, or can be altered along the progress of the treatment. The control on the effectiveness of the treatment is verified through tests. PSA test will demonstrate the activity of cancer; T test will verify effectiveness of the drugs (castration levels); and lipids test will provide info on the risks caused by the potency of the drugs.

ADT are administered continuously or intermittently. The benefits of an intermittent modality are various being the most obvious the relief of the side effects.
Recently, ASCO has introduced in its Guidelines of Treatment this modality which has been shown to give the same outcome as that on a continuous hormonal therapy. You can read about the matter here;
http://www.pcf.org/site/c.leJRIROrEpH/b.7633981/k.3C11/Intermittent_Androgen_Deprivation.htm

Citracal supplement includes vitamin D which is recommended by oncologists as essential in prostate cancer treatment.
Once you get the results from the bone density scan, your doctor may recommend you a bisphosphonate to help with any bone loss.
It seems that physical fitness is good against ADT side effects. I haven’t taken any medicine yet to counter hot flashes or other.

Good luck in your journey.

VGama

tspoon
Posts: 22
Joined: Aug 2011

I am so happy to have found this site, I have spents months looking for real cases, with real people undergoing the same thing as me. I am 59, 4+5 gleason score and in March my psa was 1913. Beginning of stage 4 cancer, I now have psa 1.9, alkaline phostase went from 476 to 185. When you hear these numbers, you just want to know, how long can I expect to feel this good? You want answers, you want a semblance of life, but mostly you want hope. Zoladex treatment #3 coming up, xgeva monthly, not to mention calcium supplements, vitamin d scripts, etc. At dr.s office Monday, they were raving over numbers I don't understand, but the conclusion was cancer is no longer present in my bone marrow. What does that mean? Where did it go? I am confused, on this matter. I didn't think remission was a word that was possible for me, is it? I feel better than I have in years, I want to make 70 yrs old, I have plans to live, I want to know if I would qualify for disability at least. I have carpal tunnel syndrome, severe, have lost the use of 3 fingers and thumb in left hand, right is mildly severe. Tuesday doc said let's operate, am i wasting my time? Answers please if anyone gas them please.

BERTB
Posts: 10
Joined: May 2011

Yes tspoon, this is a great site. I'm 61 and also G-9 with a PSA of 5.2 when dx'ed in April of this year. I'm just starting this journey and hoping for results like yours. Another great site I found is HealingWell.com. There are many men with high G's there also.
Good luck and I hope you continued success.

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VascodaGama
Posts: 1588
Joined: Nov 2010

Tspoon

You are wonderful. Your post shows me how helpful can we be as comrades in this boat, sharing information.
I sincerely hope that you are well and have gone through that operation. It is so nice to read about your successful remission in the prostate cancer.
Xgeva (denosumab) may be the “culprit” for the “cleaning” of cancer at bone marrow. It is one of the newer drugs designed to act on identified targets (markers) which are the results from DNA studies on the cancer.
You surely will do your 70s and 80s and …... All those plans will be accomplished.

I wish you a continuous success in your treatment.
VGama

tspoon
Posts: 22
Joined: Aug 2011

My psa @last check was .05, originally 1913, all my numbers are in the normal ranges. I am healthy, for a stage 4 pc patient. I had the carpal tunnel surgery on both hands at once and I feel great. Sure I hurt sometimes, after all I have 3 vertabrae ready to collapse from the cancer damage on my spine. I am happy with my choices, and always at the back of my head is the cancer is waiting for it's chance to start again. HT has it's own set of sideaffects, but I would recommend it, sometimes I find myself sooo emotional with all that has happened since this started. I feel blessed to have such a great support system in my wife, and family. Thank you all for your encouraging comments, ideas, suggestions. and information. 8 months ago it felt so hopeless and I felt helpless. Armed with information that is no longer the case. I continue to watch this blog, and wish everyone good health.

tspoon
Posts: 22
Joined: Aug 2011

thank you for the info on this website, there is no such thing as too much info I am finding. Next psa blood work next week, anticipating tje same .05 as last tests. Acid level at last ck was 76, i feel great and hope you are well as well.

George A
Posts: 9
Joined: Sep 2011

I am 54 Yrs old, Just yesterday my biopsy results came out with 4+5=9 PSA 55, I am new to this and I don't know what to do next...I am so much confused, what do all these results mean? , my GP said that I have to wait until 1st week of October to try take an appointment from a specialist, few people who saw my results went crazy about it and advised me to act quickly other wise I will die soon!! I can't wait to see a doctor
George A

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lewvino
Posts: 1007
Joined: May 2009

George,
So sorry to read about your test result. First you might want to start your experience as a new thread here on the forum.

A Gleason 9 is NOT Good news. The first thing I would do is to send your slides for a Second opinion. The second thing I would do is to educate yourself as much as possible. This is a great place for education which is why I suggest starting this as a new thread.

You are not going to die soon as some have indicated to you! But it is important that you do start down the road to recovery and fighting this beast. Usually the reason they have you wait a few weeks is to allow time for the prostate to heal some following the biopsy. The first of October will be here very quickly.

I was also 54 when I was diagnosed but my Gleason was a 7 not a 9 with a PSA of 5.3. I had surgery to remove my prostate.

You will most likely need to have several additional tests ran to determine if your cancer has spread. The tests are not painful so don't worry about that! Following those tests then you will most likely be started on your treatments. The goal of the treatment will be to knock that PSA Down in number. You may or may not have surgery to remove your prostate. I know of one man that had numbers similar to yours and he had surgery first to remove the prostate and then started followup hormone therapy. He is doing well two years now from his initial treatment.

Do let us know how things progress. I'm sure others will be giving you their thoughts also.

lewvino
age 57

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lewvino
Posts: 1007
Joined: May 2009

George,
So sorry to read about your test result. First you might want to start your experience as a new thread here on the forum.

A Gleason 9 is NOT Good news. The first thing I would do is to send your slides for a Second opinion. The second thing I would do is to educate yourself as much as possible. This is a great place for education which is why I suggest starting this as a new thread.

You are not going to die soon as some have indicated to you! But it is important that you do start down the road to recovery and fighting this beast. Usually the reason they have you wait a few weeks is to allow time for the prostate to heal some following the biopsy. The first of October will be here very quickly.

I was also 54 when I was diagnosed but my Gleason was a 7 not a 9 with a PSA of 5.3. I had surgery to remove my prostate.

You will most likely need to have several additional tests ran to determine if your cancer has spread. The tests are not painful so don't worry about that! Following those tests then you will most likely be started on your treatments. The goal of the treatment will be to knock that PSA Down in number. You may or may not have surgery to remove your prostate. I know of one man that had numbers similar to yours and he had surgery first to remove the prostate and then started followup hormone therapy. He is doing well two years now from his initial treatment.

Do let us know how things progress. I'm sure others will be giving you their thoughts also.

lewvino
age 57

George A
Posts: 9
Joined: Sep 2011

I feel much better now after I heard from you, this is a great site indeed and you sound like a great person, I congratulate you for defeating this disease!!
I really can't wait to see my doctor soon, I am determined to fight the disease till the end, I have hope and faith in god as well as new technologies that are able now to perform miracles.
The hard thing though will be the decision that I will have to make on my own chosing the treatment path, as I knew that the patient must decide that not the doctor!! is that likely to happen ? and what are the crireria that I will rely on in making such tough decision!

Thanks again
George

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

George

I would like to welcome you to the board too. The first thing I recommend you is that you do not allow anxiety to take over your rezoning.

Prostate cancer (PCa) is scary to all of us. You may not know but there are many guys in similar situation as yours; young and diagnosed with an aggressive type of cancer. My diagnoses occur at my 50 years old eleven years ago, and I cried.
Those who commented your sentence (“I will die soon”) are people that do not know about this type of cancer and are unaware of the several ways to treat it. It is a fact that your status with Gleason grade of 4 and 5 (the highest in aggressivity) and the PSA at high level of 55, are two elements indicative that you need to be cautions and should try to control the matter the soonest, but you should do it with a sense of coordination.

Educated on the matter is a must do thing and you could start preparing a list of Questions for your next meeting with the specialist. We at this forum can help you in understanding the meaning of the things, based on our experience. You will need a doctor specialized in PCa and that you trust. Not a generalist.

One week waiting to meet your specialist it is reasonable to me. The cancer status does not modify that critically in 7 days. Prostate cancer is of the type that gives patients time to study about their status, time to decide on a treatment and time to plan its incidence on life routines and future. The whole family will be affected by the bandit.
I wonder what made you to have a biopsy. Many (like in my case 24.2), it was due to a suspiciously high PSA test. And some are due to past history of symptoms or due to other traditional examinations such as positive DRE.

Your doctor most surely will start by recommending you to get image studies like an MRI and Bone scan, and probably a PAP test and more PSAs. The biopsy report has other information that you have not posted here, but that it is necessary for your next meeting with the doctor. He will attribute a Clinical Stage to your case from which a determined treatment can be then recommended.

In this site you can get an idea of questions which you can adapt to your own List. I always recommend that the list should be long and should include questions even if they seem weird to us. Waiting for a second consultation to make more questions later may not be wise when one needs to get to a quicker response.
http://csn.cancer.org/node/224280

Here are generalities regarding prostate cancer;
http://www.drrajmd.com/conditions/prostate/cancer/prostate_cancer.htm

All treatments have their risks and side effects to which you should be aware of. These should make part of your questions and it should be considered in the decision of the type of treatment, because some effects are nasty and may become permanent.

I hope you let us know developments on your case so that we better can opinion on your status.

Good luck in your journey.
VGama

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

George,
As part of your education I would strongly recommend purchasing the book by Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, This can be found at Amazon or other online book sellers.

Dr. Walsh is considered one of the top experts in the field of Prostate Cancer. His book is written for the patient to understand about this cancer that you are facing.

VascoDaGama has also given you some solid advice and I respect Vasco's opinions. He is well educated on different aspects of this cancer.

A positive mental attitude will go a long ways. Also your faith in God is great. I'm also a religious person and had many praying for me on my journey. Unfortunately my journey is not over yet since following my surgery a positive 'margin' was noted. What this means is that the cancer went to the very edge of the surgical speciman when it was examined. I have my PSA checked frequently and so far have been getting 0's on my tests. If my cancer comes back then I will need follow up treatments.

You have to be your own advocate on this cancer and don't blindly follow what a doctor might recommend. A good doctor will consider your thoughts and questions.
If you ever feel the need to talk offline there is an email portion to the forum where you can contact any of us. Look under CSN Email. Or of course we could chat by phone. Several men chatted with me on my initial beginings of my journey and I have talked to others to help them with the understanding.

Lewvino (larry)

wikanders
Posts: 1
Joined: Mar 2012

I just joined this network. I don't know where to begin in this blog....so I just selected this posting to interject with a question.

My husband was diagnosed with PC in 2008. (5+4 Gleason) Had DiVinci Surgery and follow on radiation. Since then he was put on Lupralite Depo - 2x year and Kasodex. In 2010 the doctor skipped one injection but the PSA started up again. They took him off Kasodex and returned to the 2X year of Lupralite. His last injection was in Nov 2011.

He had a PSA test about a month ago and it was over 5. We are on the Atkins diet as he was gaining a great deal of weight. One month later, his follow-up PSA was 17.

Question: Can red meat affect the PC negatively?

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

Wikanders,

Sorry that you and your husband are dealing with this serious diagnosis.

Many believe that red meat has a direct correlation to prostate cancer (breast cancer too). Dairy is another animal product that may affect his cancer.

In the United States our beef comes from cattle fattened on corn in giant feedlots. The natural diet for cattle is grass but about forty years ago ranchers discovered that they could increase the yield of beef per cow and speed its time to slaughter by feeding them corn instead of letting them loose on the range to mature naturally. Growth hormones were also discovered that accelerated the growth of cattle. These corn fed cattle with their growth hormones and massive amounts of antibiotics (because of the conditions in the feedlot) carry over directly into the meat we eat in America. These products increase the ICFs (Insulin Growth Hormones) in our food and have been shown in many studies to accelerate cancer growth.

Dairy products, in my opinion, are even more dangerous because they produce even higher amounts of ICFs and are completely unnecessary in the human diet. Cows milk is great for baby cows but humans do not need milk (or dairy products) after they have been weaned from breast milk.

There is a lot of material out there on this subject and I encourage you to do your own research and draw your own conclusions.

Many of us with prostate cancer have chosen to reduce or eliminate our intake of dairy and red meat.

Best of luck to you.

K

bdhilton
Posts: 759
Joined: Jan 2010

Good summary plus the corn they feed the cattle (pigs, chickens, etc...) are grown from genetically engineered (GMO) corn. There is a huge movement going on to force all food to state if is GMO or not …So, Tell the FDA: Label My Food

A legal petition (Docket # FDA-2011-P-0723-0001/CP) has been filed with the Food and Drug Administration (FDA) calling on the FDA to label genetically engineered (GE) foods.

Become a part of this growing movement and tell the FDA that you believe we have a Right to Know what’s in our food. Post your comment on this petition today and make sure your voice is heard!

justlabelit.org

rede2fite
Posts: 1
Joined: Oct 2011

I have a score of 9 and a PSA of 4.38 and my Dr. Says all hell is going to break loose. We're talking pre-radiation, surgery, and hormone shots. DOES THAT SEEM RIGHT?

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Rede2fite

The protocol recommended by your doctor does exist but it requires a delicate surgery post radiation. Risk of fistula and a series of side effects may follow, and it is difficult to find doctors to do the “repair” work later if things go wrong.
Get assurances for aftercare services before committing.

Gleason 9 patients have a series of treatments (solo or combinations). However, other info related to each case is required to decide on the best approach. Your clinical stage, biopsy results, age, other health problems, etc., will be important for a final decision.

Welcome to the board.
VGama

mrspjd
Posts: 693
Joined: Apr 2010

rede,

You seem to understand the seriousness of your diagnosis but, IMHO, any doctor who advises "AHIGBL" is unprofessional and doing you a dis-service. In a timely manner, please seek many (2nd, 3rd) opinions from OTHER PCa specialists BEFORE you agree to any PCa treatment. If at all possible, try to locate & consult with experienced and skilled radiation oncologists, urologic surgeons, and especially, an oncologist who specializes in treating PCa patients (and whose speciality is not surgery, urology, or radiation). Be prepared for your appts by bringing along any and all copies of your test reports such as your biopsy report, bone scan, CT scan, MRI or E-MRI, etc.

I like your attitude...ready to fight! Fight on! Good luck.

TitusvilleBills
Posts: 23
Joined: Nov 2011

I only found out on October 13th that I have prostate cancer. I am going through the "hurry up & wait" phase of various doctor appointments as we decide on a treatment plan. My urologist is recommeding surgery with the Da Vinci robot by Dr Vip Patel (Celebration Fl), but is not being pushy at all about this. He simply stated that most urologists would recommend removal since I was 47 years old.

I spoke briefly with Space Coast Radiology, and they would not give me a recommendation on treatment. Said possibly may need a combo of surgery & radiation. I am visiting Moffitt Cancer Center this Thursday (11/3) to discuss options, and meet with Dr Patel about robotic surgery. Of course, my preference is to start something. I am not familar with some of the "lingo", what is a PCa, and what is AHIGBL?

I am trying to learn as much as possible so that I am able to make an educated decision. I have read some white papers on Prostate Cancer from Hopkins, and I have a pretty good book "Winning the Battle Against Prostate Cancer" by Dr Gerald Chodak. I was hoping that anyone that has been done this path already might share with me some questions that I should be asking my doctors prior to making a decision. I have also met with numerous men that have gone through various treatments. Anyone have a recommendation on the "Triple Prong Approach" (seeds, external radiation and hormone therapy).

Appreciate any advice
Thank you
Jim

hunter49
Posts: 204
Joined: Oct 2011

Sorry to hear about your diagnosis. You have an aggressive disease by your numbers and I would guess there is a good chance it broke throught the wall of the prostate. That being said I would feel surgery is not the best options. Johns Hopkins has a diagnostic clinic they do every other week. You can go there they examine you and your pathology report. Then some of the top doctors discuss your stage and best course of treatment. They are excellent.This program will give you a great amount of good information. I would absolutely go there and probably get treated there as well. If your interested let me know I will send you contact information. Good luck you will do fine with the proper treatment. Stay calm and focus on today as tomorrow is waiting already.

TitusvilleBills
Posts: 23
Joined: Nov 2011

Thank you. I would greatly appreciate the information.

hunter49
Posts: 204
Joined: Oct 2011

The number to call is the scheduling center 410 502 8000. It was great for me. i was on the fence about what treatment to proceed with. I met with 3 of the top people in the world including Alan Partin who developed the Partin table for the disease spreading reoccurring etc. My slides were reviewed by one of the top pathaologists in the country and they all met to advise me on the course of treatment. Good luck let me know how it goes.
Doug R.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Doug
Your advice to Jim is excellent. I also think that JH is probably the best place to get a second opinion on his case. Surely they are biased through surgery to a certain extent but they would not recommend surgery if such case would not have a good chance into cure.
JH do not accept patients for surgery if there is an apparent possibility for failure. They “greatly value” their reputation in successes.
The problem falls with the side effects. How far can one accept to be cured but confront a possible permanent “defect”?
This is a tough decision and the answer can be found only in one self’s willingness and the family.
I hope you and Jim find that answer. I found it at my time.

Regards.
VG

hunter49
Posts: 204
Joined: Oct 2011

Hey VG.
Thank you for the support of my post. You actually made me feel good about my outcome at JH as all the doctors said surgery for me. However, there were 5 others in the MDC and 2 were recomended a watch and wait and 3 radiation. They were very analytical about wht they did.One of the men who they suggested radiation was 58 and had a 4+4. It was really a great experience especially if you were not well informed about the disease. Hope you are doing well. Keep fighting and kick its ass. Good luck.
Doug
ps no idea why this came out red

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Doug

What does your PS (no idea why this came out red) mean?

VG

hunter49
Posts: 204
Joined: Oct 2011

when I typed a thank u to u it was showing up red thought you would see it that way when posted no biggie. Scheduled surgery fro next Thursday. Every doctor recomended it including 3 radiologists. oh well here goes

mrspjd
Posts: 693
Joined: Apr 2010

Congrats on making a tx decision. Sending best wishes for a speedy and full recovery next week.

mrs pjd

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Doug

I am sorry but could not interpret well your “telepathic wireless” communication. I am from a non English speaking country so that my vocabulary is limited. With the help of Mrs PJD, I am taking it as your decision for surgery. You shouldn’t be apprehended with what others in this boat think on your choice for a treatment. We all work hard to get to that decisiveness and once satisfied; SURELY our decision is the best. Be confident.

I want to congratulate you and hope it will “terminate” this harsh passage in you and your family’s life.

You can count on our support in your journey ahead. Please let us know more about happenings.

Wishing you the best.
VGama

hunter49
Posts: 204
Joined: Oct 2011

Thank you. BTW, Your English us fine. Will keep you posted

tonahawk899
Posts: 9
Joined: Jul 2011

I'm 63, robotic prostatectomy on May 21,2010, similar symptoms and treatments, I'm 20 months out with still less than 0.08 Psa, although climbing a little over the last 3 months, will have another Psa test and testosterone around February 19, hoping for the best, I also had Adjuvant therapy, Casodex and Lupron for 4 months, followed by 34 sessions on IMRT. The ***** got one of my SV. I'm still pretty active, hunt, fish, walk, shovel a hell of a lot of snow(Park City, Utah), life is great with every day a blessing from God, take some supplements, eat a lot of wild game, red wine, green tea, etc, write me at tonahawk@msn.com for further information, God Bless all of you on this forum, sincerely, my prayers and thoughts are with everyone of you everyday, the only ones who understand how this really affects your life are you guys, Tony

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Tony, I am thinking of you too. The "climing" to 0.08 may mean nothing. Hope for negatives in February.

VG

Mikes2990
Posts: 6
Joined: Jan 2012

I'm 54 and in the last year I have been in very much your situation. Gleason 5+4, 13/13 samples positive in biopsy, bone scan clean. I started hormone therapy immediately. I had a davinci radical prostatectomy, the margins were dirty and one of my lymph nodes had metastasized. T3N1 I went to an oncologist, Dr Moskowitz in Naples Florida, who gave me 6 doses of chemo, on the very probable assumption that micrometastases had already occured and this was my best chance to cure rather than palliate. After the chemo, which is very tough stuff, every bit as nasty as people say, I has 40 doses of radiation. I have exhausted every known treatment. They cannot be done a second time.

Right now, cancer is undetectable, if it stays that way I might live to be 100, if it recurs, I've got about a year. The best I can suggest to you my friend, is that you hit back at this awful disease as hard as you can as soon as you can. You have everything to gain and lose, so be maximally aggressive.

I know how much the disease AND the treatment mess with your mind. Everybody breaks down once in a while but you have to stay strong for yourself and those who love you. Get right with God. Stay tough and fight back, learn to appreciate how much you have been given and remind yourself how much there is in your life that is worth fighting for. I know what a gut check this is. Good luck and God bless.

Mike

BTW, I have gotten some solace from this, maybe you will too:
http://www.youtube.com/watch?v=nLD09Qa3kMk&feature=results_main&playnext=1&list=PL361CE5C9167977FC

Berco
Posts: 7
Joined: Feb 2012

I was diagnosed with Cancer Jan 2012- Gleason Score of 9 (5+4) in 4 of the 6 sections of the Prostate.PSA in Nov was 7.26.Of these 3/3 of the Right Lobe have 50-80% cancerous tissues and right base has less than 5% cancerous tissues. No lymphovascular invasion seen. CT and Bone Scan-no metastasis but on DRE doctors feel cancer has gone outside the capsule.
Has anyone tried HIFU with similar scores. Doctors recommending 2 different plans.
First robotic surgery and then adjuvant treatment
Second- hormonal or chemo then MRI and finalize treatment. if prostate outside capsule then no surgery.
Any suggestions please.

VascodaGama's picture
VascodaGama
Posts: 1588
Joined: Nov 2010

Hi Pravin

Welcome to the board.
I wonder what your age is and what made you to get to a biopsy. Have you any symptom or was it an unexpected high PSA?

Gs 9 are aggressive types of cancer but your negative bone scan and CT may indicate that the cancer is still localized. The negative aspect of your diagnosis is the positive DRE. Most probably the cancer has already penetrated the capsule to which condition surgery would not provide a cure.

Your doctor is advising two typical forms of treatment correctly. However, the combi of surgery plus adjuvant is ambiguous. What does he have in mind as adjuvant treatment? Is it radiation?
If the answer is Yes then his approach is “debulking” which may be unnecessary, because the radiation will radiate the whole prostate while caring for surrounding areas too. This would relief you from the risks of surgery and the side effects. In fact treatments for cancer are not perfect and many decisions are made on guessing.

The second option with Hormonal or Chemo is viable but it is palliative not curable. This is recommended for patients with systemic cancer, which by the info you share it seems not be the case. The MRI to confirm the “outside” diagnosis is not that reliable in low PSA levels (lower than 10). Typical image studies (MRI, CT) cannot ascertain small tumours (less than 1.5 mm) so that using the test to judge for extra capsular extensions may not be practical. The newer MRI with higher resolution or PET scan with the newer contrast agents (C11) are better but still lots of guessing will be required to define on extra capsular extension.

HT plus RT is recommended for cases similar to yours where positive DRE exist. The “debulking” principle is also suggested by some doctors when the patient is young. However, the practice will involve doubled risks from double radical treatments (RP + RT) that may impair the quality of life.

I would recommend you to prepare a list of questions and to get second opinions from other specialists.

The best to you.

VGama

Berco
Posts: 7
Joined: Feb 2012

Hi VGama

Thanks.I am 57 and currently single and no children. I did not have any symptons and the only reason for the Biopsy was the unexpected high PSA.
I have consulted with 4 Urologist/Oncology surgeons, 1 Medical Oncologist, and 2 Urologist/Oncologist. Of these the 4 Surgeons+ the Medical Oncologist recommend surgery. The other 2 who are with my HMO recommend initial Hormonal or Chemo then MRI after 8 weeks and decide the plan of treatment.
One surgeon who is the highest rated feels that there is a 80% probability of his being able to remove all the cancer and has ordered the MRI to be done immediately-this week before the robotic surgery.Adj treatment would probably be RT
The Biopsy report gives a maxm.length of 0.6 mm for the tumour.

Thanks again
Prav

biketom
Posts: 2
Joined: Apr 2012

I was diagnosed with a perfect 10 Friday, 5/13/11. Had robotic prostatectomy 6/8/11. My doc (Ahlering) said mine was the most interesting (difficult) of the 1072 he'd done at the time. Prostate stuck to rectum, metastisized to lymph glands & bones. And worse, if possible. Started Lupron 6/15/11, still on it. Had 5 rounds of taxotere. PSA was as high as 27, but taxotere knocked it out. It's currently undetectable. Sadly, it will be back. Hopefully in 20 or so years, but I expect less. I'm fighting it with lots of exercise, healthy eating, and FU attitude toward the Bas***d cancer. I'll be 67 next month.

david001
Posts: 1
Joined: Jun 2012

I am 73, have a gleason of 9, psa 1.4, clear bone scan and an mri showing that there is cancer in the vesicles and out of the margins. Just got on harmone therapy and trying to decide to have surgery or radiation. The senior experience doctors pick radiation and the younger aggressive doctor recommends Da Vince robotic surgery. Advice very much appreciated.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

With a gleason 9, Iwould like to ask you how many point's out of 12 sample, but if you have 9's you must make some decision. Good on the harmone therapy, what type?

If out side of the margin and in the vesicles and probable in the nevre. The recommendation for robotic surgery is wise. The factor of age VS recovery time with doing open prostate surgery, but I beleive the open Prostate surgery is better for a gleason score 9 patient. The doctor can get hands on the area of the monster and fine clean margin better than RP. The recovery time with open prostate surgery is a lot longer!!

Good luck and don't waste time!

God bless

Rangertug
Posts: 2
Joined: Aug 2012

What treatment did you go with ? How are you traveling now?

I had Gleason 9 (4+5) for 50% of the 12 samples and 4+4 for 40% of samples with 1 negative. I was told surgery was a waste of time and have just had HT , my PSA was 254 in July 2010 in July 2012 was 5.1. My cancer had metastized to my bones and lymph nodes, PSA was see sawing up and down, so I joined the Prevail MDV 3100 clinical trial, so far with fantastic results.

Trew
Posts: 892
Joined: Jan 2010

Ranger, wishing you the very best.

-Trew

Bluey
Posts: 2
Joined: Sep 2012

Hi, My Prayers & Wishers. My Gleason was or is 9. PSA 5.6 on 3rd June 12. Treatment is:-

1. Female Hormone Zoladex planted in tummy;
2. 4 gold seeds planted in prostate. PSA now 0.17 08/08/2012
3. Started Radiotherapy on 27th August 2012 half hour sessions each monitored with pre X-rays.

So far everything going well according to chief Radiologist at this morning's (17th September) talk. My program is for another 4 weeks radio with 12 x 3 month Zoladex injections. My family has a history of cancer, grandmother on mother's side had stomach cancer, of her 9 children 8 had cancer, my mother died of breast cancer at 45. My directly related 3 years my junior sister has been fighting it in one form or another for 6 years (she is a human guinea pig for a cancer professor).

The only problems I have are:
(a) Lack of concentration;
(b) Lack of energy;
(c) Low Haemoglobin count 22/3/12 147; 8/8/12 123;
(d) Bladder slow pressure, especially at my 2 hour intervals at night.

I am fortunate I have a good friend who is 12 months in advance of me with prostate plus a cousin who is one month behind me. We talk things over and pray for each other. It is good to have prayful and caring friends that one can discuss procedures with.
All the Best,

Bluey

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