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Prostate Cancer Gleason 9, need your urgent advice

George A
Posts: 9
Joined: Sep 2011

Dear All,
I need your help

My name is George, I am 54 yrs old, have been recently diagnosed with Prostate Cancer Gleason Grade 4+5=9
PSA 53
Bone Scan : Clear

CT Scan as foll:
The liver, spleen, pancreas, adrenal glands and kidneys are clear.
No ascites. There is pelvic lymphadenopathy with marker nodes measured in short axis as follows:
1. Left iliac chain node -2.0 cm (image 77)
2. Left common iliac node -1.0 cm (image 65)
3. Right Iliac chain node -1.0 cm (image 77)

There are mUltiple small subcentimeter retroperitoneal lymph nodes at and below the level of the renal arteries which do not meet strict CT size criteria.

The prostate appears prominent size measuring approximately 49 x 43 cm in the axial plane. The median lobe of the prostate indents the base of the bladder. There is mild asymmetry in the size and attenuation of the seminal vesical glands, the right larger and lower in attenuation than the left.

There is atelectasis/consolidation at the left lower lobe. Minor subsegmental atelectatic changes are seen at the lingula and right lower lobe.

IMPRESSION

1. Pelvic lymphadenopathy including bilateral iliac chain nodes compatible with metastatic nodal involvement, as described. Multiple sm.all subcentimeter retroperitoneal lymph nodes are indeterminate.

2. The right seminal vesicle gland is mildly larger in size and lower in
attenuation relative to the left. -Although non-specific, disease involvement of the seminal vesicles cannot be excluded.

I am so worried, my turn with Urologist is only after 10 days, this is the way here in Canada under Health care system, but I am so worried and can't wait untill then to know where I am heading and which way of treatment I should take!!!

I need your help friends to guide me to the best way of treatment and whether you have an idea about how many years I will live in light of the above results!!!!

Your support will be greatly appreciated

George

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

George,

Sorry to read of your diagnosis. As you seem to realize, you have been handed a serious diagnosis and your pathology report represents an advanced stage of prostate cancer with potential involvement of the seminal vesicle. Your Gleason score of 4+5 indicates that you have highly developed cancer cells that are poorly differentiated. Based on what you provided, I think there is a good possibility that prostate cancer has already spread beyond the prostate gland.

While every case is different and you must address this diagnosis sooner rather than later it is important to keep in mind that prostate cancer is different in every man. Most men live very long and productive lives after an advanced cancer diagnosis and the CT scan at least shows that organs where prostate cancer frequently travels to when it leaves the prostate are clear, at least at the level that the CT scan can discern. You should be aware that CT scans cannot detect microscopic prostate cancer but there are other tests that may be available to you in Canada that can provide more specifics to your medical team.

I suggest that you take the time between now and your appointment with the urologist to educate yourself on the various treatment options. If the cancer has indeed left the prostate, removing it through surgery will not stem the growth of cancer in other parts of your body and could cause additional side effects such as incontinence. While your pathology didn't indicate the volume of the prostate, it seemed enlarged and I wondered if you were experiencing other symptoms such as a weak urine stream, an urge to use the toilet more frequently, blood in the urine, or other symptoms. There are some surgical techniques that can reduce the size of the prostate and you should discuss these at your appointment. You should also be studying about hormone treatment and radiation as potential therapies; including HD brachytherapy or IMRT in conjunction with hormone therapy.

Canada has some prostate cancer treatment options that are not available in the USA such as HIFU. I don't know much about the Canadian health care options in cases like this but I am sure you can find additional information on the internet or some other Canadian patient in this forum might have gone down this path before.

At your next urologic appointment your doctor will explain the impact of your diagnosis and the available treatment options. While you probably need to move with all due deliberation, I would try to avoid being rushed into any decision you don't fully understand. Your medical team should explain the various options to you in detail along with potential side effects. In the end, it is you who will have to make the decision on how to proceed. You can't make an intelligent decision without more knowledge, so please take the time that you have now to do a crash course on prostate cancer.

When you go to the appointment, I suggest you take someone like your wife, other family member, or close friend, who can take notes while you try to concentrate on what the doctor is telling you. Ask the doctor if it is OK to record the conversation so you can review it later. I can almost guarantee that you will forget much of what he tells you at first as this is all new territory that you don't yet have the background to handle.

There are several postings in this forum from men who have had a diagnosis similar to yours and I encourage you to read back through several pages of posts to see how others have dealt with this situation. Most men who have had prostate cancer and who post here regularly welcome private emails (you can send them through this site) to ask them additional questions. There are a lot of people here who will be willing to help and encourage you in the journey you are just starting.

Best of luck to you as you deal with this difficult situation.

K

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

George

Welcome to the board.
It is clear to you about the advanced status of your case; however that is not a death sentence.
There are ways to deal with the problem and “blow out” the bandit.

Before advancing with your concerns, you should get other info regarding the number of positive cores in the biopsy and cancer volume, and tests results such as; DRE, PAP, etc., and a complete clinical stage, and still any symptom or other health concern, which will be required to properly access your real status.
While researching you should prepare a List of Questions with as many inquires as possible to present to the doctor in your next meeting. Here is a link that may help in that “job”;
http://csn.cancer.org/node/224280

In an advanced case with positive extra prostatic extensions (seminal involvement and positive lymph nodes) and negative bone metastases, surgery may be not top recommended. It would not provide you cure but debulking, together with a series of risks and side effects. In fact, both treatments of surgery or radiation are usually recommended in advanced cases with the intent of “Debulking”. Some controversy exists regarding this principle of administering a radical treatment with no curative intent.

The treatment of choice to the many survivors in similar cases, reported in forums for PCa, has been for a combination of radiation plus hormonal therapy, which, while advocating cure have long term survival rates over 20 years. Nevertheless, NCCN guidelines address the concern of the radiation modality to patients with high Gleason scores if benefits are not expected. Instead the guidelines recommend chemotherapy or hormonal therapy or a combination of both. Doctors also prefer to keep the radiation to a latter attack.
High Gleason grades lead often to systemic disease so that you should care for your case the soonest. I would recommend you to do researches in the net googleing this sentence;
“treatments for prostate cancer and side effects”

Here is a good “compendium” of advices from Chuck (a survivor and PCa advocate at Us TOO), that as many of us here has no medical enrolment. He provides a series of links and doctors comments which you can follow in your introduction to your problem.
The title is;
ADVANCED PROSTATE CANCER/HIGH GLEASON SCORE AT DIAGNOSIS?
http://www.ustoowichita.org/pdf/Advanced%20Prostate%20Cancer%20at%20Diagnosis.pdf

Do not be anxious. Educate yourself and take actions timely. Many here will help you along your journey.

The best to you.
VGama

George A
Posts: 9
Joined: Sep 2011

Dear VGama,
Thank you very much for your reply, It was great to hear from you as well as from all other members on this great platform.
I checked the links you gave me and read all details including the valued list of questions to be addressed to Doctor. I have prepared a list of questions from the site and I will for sure address them all today to my Doctor in the meeting scheduled this afternoon.

Thanks again

George

George A
Posts: 9
Joined: Sep 2011

Dear VGama,
Thank you very much for your reply, It was great to hear from you as well as from all other members on this great platform.
I checked the links you gave me and read all details including the valued list of questions to be addressed to Doctor. I have prepared a list of questions from the site and I will for sure address them all today to my Doctor in the meeting scheduled this afternoon.

Thanks again

George

George A
Posts: 9
Joined: Sep 2011

Dear K
Thank you so much for your valued detailed reply, I really feel much better now after I have gone through your reply and other members` replies in this great forum.
Your proffessional notes are great, I have just put them down on a separate sheet of paper to be addressed to my Doctor next Monday.

I called today the office of my doctor to ask about all available treatments available in Canada for Advanced prostate cancer, I mentioned to the secretary the HIFU, but she didn`t know what I am talking about!!.

I will keep in touch and keep u posted after my appointment
Thanks again K, wish you all the best
George

redsock
Posts: 1
Joined: Oct 2011

Hi George

I was diagnosed with non bony metastatic prostate cancer which had spread to the lymph nodes in the aortic and pelvic regions.

My Gleason score was 9 and my PSA at the time was 125

All this was in February 2006 of course I have the odd day when the side effects of my treatment decide to take effect but 95% of the time I carry on my life as normal BUT now with a real purpose.

My treatment consisted of Hormone Injections every 3 months for the first 3.5 years (no problem with the injection just learning to manage the side effects.
I also had a bisphosphonate infusion every 3 months to strengthen my bones (a 10 minute procedure with little or no discomfort.

After 3.5 years and with my PSA level undectable I gave my body a 18 month rest by stopping all the treatment.

I went back on the treatment in March this year when my PSA of course started to rise again (this time I tried a different hormone injection and the side effects were less).

My PSA has fallen again to 0.2 so if it is still stable then I will take a treatment holiday starting around Christmas time.

George if you want to contact me you can find me at the red sock campaign, I am there to help other men who like me have to find a way through the minefield that is prostate cancer.

No two men are the same and no two cancers are the same but a positive attitude and a better understanding certainly help.

Keith

George A
Posts: 9
Joined: Sep 2011

Dear Keith,

When I started reading your reply and for a while, I thought that who was writing is me!!!
your case is identical to mine as well as your friend Mr. Peter Tyson who had shared a great story at the Redsock form. Now I don't feel alone, this form and the Redsock are great places for people like me to be. I am still reletavely new to this disease, I feel that I have millions of questions, and I am almost certain that my doctor will have no time to answer even 10% of the questions I have. I am greatful to you Keith and to all members who shared with me their stories and are helping me and other members through this disease journey. I will certainly get in touch with you again and again as well as with other members in this form and the Redsock.
How Can I sign in at the Redscock to be a member ???

Have a great day Keith and thank you so much for your support

George

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