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Gleason 9

Carrera
Posts: 6
Joined: Nov 2016

Hello members,

I'm new to this board and just started reading the wealth of information and would like to thank everyone who contributes. A little info about myself: 70 years old and diagnosed with a gleason score of 4+5=9.

In 2011 my PSA score was 2.6, in August of this year, 4.9; my doctor recommended to see an urologist who thought I should have a biopsy. The procedure was done late October with the results as above, 4+5=9. 12 samples were taken, the right lobe showed no prostatic tissue but the left 6 of 6 tumors with largest focus spanning 0.6 cm.

Since then I had a CT scan of my abdomen and pelvis area and also a bone scan, both showed no metastatic disease. My urogolist is urging for surgery, I have asked to get a second opinion on my biopsy, don't feel comfortable to rush to surgery but am also worried if I have time to look further......all this came a little unexpected and I have researched a lot on this type of cancer. the more I read, the more confused I get.

What are some of the suggestions/recommendations of the members?

Thank you for any help,

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Welcome, Carrera

Definitely, definitely have the biopsy reviewed, and make an appointment with a radiation oncologist.  The options are confusing, so many options. But you are correct, do not run blindly in to this. It is a major surgery: a lot of digging.

While a 70 year old with a healthy heart can withstand surgery, you are near the upper age limit for when surgery is considered a wise choice for prostate cancer..

Gleason 9 disease can't be ignored, but a few weeks of consulting with other oncologists won't make any difference.

max

 

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Carrera
Posts: 6
Joined: Nov 2016

Thank you for answering; I will definately get a review of my biopsy, have it already requested. Yes, I have read that it is recommended to see both a Radiation and also a Medical Oncologist, this is also on my to do list.

I probably also should have mentioned that I'm in pretty good shape, during the summer season I swim every day and now I'm walking on a treadmill. Have stage 2 diabetis and high BP, both are well under control with medication (pills only).

hopeful and opt...
Posts: 2224
Joined: Apr 2009

http://csn.cancer.org/node/306682

Carrera
Posts: 6
Joined: Nov 2016

Yes, thank you; I've been following this thread, lots of good information

hopeful and opt...
Posts: 2224
Joined: Apr 2009

It is most probable that a man with six positive cores  of  Gleason 4+5=9 for the cancer to metastatic. Since the resolutions used in CT Scan is not adequate to determine small cancers outside the prostate, it is still very probable that the cancer has escaped the prostate. There is a 3T MRI machine that provides much finer resolution and is more likely to determine potential cancer outside the prostate, as well as determine where suspicious lesions are within the prostate. Additionally there are various PET SCANS that indicate where the cancer is outside the prostate area, and can be used to direct the radiation that needs to be given to the areas where the cancer exists, and thus the radiation can be directed...Vasco wrote about these PET SCANS in the thread that I recommended that your read in my above post,

There are side effects from each treatment type, and they are cummulative. The potential side effects from surgery are the greatest, and may cause incontinence and ED, as well as effects from the surgery itself. The side effects of surgery are age related, so if a surgeon does a perfect operation a man of 50 may show no side effects while a man of 70, like you, can have significant side effects. In your case where the cancer most probably has left the prostate and has metastatized, having an operation would be superficious, and other treatment will still be required that may be radiation and hormone treatment, or hormone treatment itself, depending on the extent of the metastasis.

Radiation is a preferred treatment to surgery in advanced cases since the radiation can be directed beyond the perimeter of the prostate, thus radiating the prostate as well as some surrounding areas, which surgery does not do.

It is important for you to interview a Medical Oncologist , the very best that you can find to administer hormone treatment, and lead your medical team, and to interview a radiation oncologist to discuss various radiation treatment modalities.

PS It is a hard money oriented world, and many times the urologist recommends surgery, because that is what they can do, and do not recommend diagnostic tests such as the imaging tests that I mentioned to determine what is going on......Based on the information that you submitted surgery is not what needs to be done in your case , and in my laymans opinion would be a determent for you.

Come back with any question or concerns that you might have, one of us may have an answer.

 

Carrera
Posts: 6
Joined: Nov 2016

There is no doubt that the medical field is moving very slow, at least that's what I'm experiencing. As soon as my Urologist has given me the biopsy results, I've asked for a re-test/second opinion (latter part of October). Despite several efforts to have that done, I'm only getting lip service, but a hard sell toward surgery.

I have asked to see both a Medical and Radiation Oncologist and am waiting to get an appointment; I have no idea how much time, if any, I can 'waste', but am not prepared to rush into surgery, yet.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Carrara,

Hopeful and Optimistic gave as good an assessment of what a 70 year old man with metastatic PCa  should do as can be written.

RT can be, and often is, curative. And combined with Hormonal Therapy (if necessary) it routinely gives guys ten years or more. The preferred route.

max

VascodaGama's picture
VascodaGama
Posts: 3015
Joined: Nov 2010

Carrera

I believe that you are by now well informed on the disease but confused for the diverse ways in diagnosis and treatments. That is what cancer is about. Not as simple as getting a cold. And on the top is that nobody will assume responsibilities on the choices and outcomes. You will be requested to agree and sign a relief contract freeing the physicians and the hospital of wrong outcomes. You will have to confirm that was informed and "understood" the risks and side effects of the therapy. You have the ball in your hands to start rolling it. You need to create confidence and reach to a final decision.

My first impression is that your cancer may have the characteristics of growing in single mass tumours (not spread colonies) but aggressive. Gleason rate 5 type cancerous cells (PCa) do not produce much PSA (poorly differentiated) so that your doubling of 60 months is very slow. The percentage of "contamination" in each core (less than 0.6 cm out of 2.0 cm) is not as voluminous as many Gs9 guys report. These aggressive cancers have high risks to metastasize (extrude out of the gland) but due to its characteristics it may form small tumours (not micrometastases) that are easier to be detected in scans (image studies), which provides a certain certainty on the advancement of the case.

Have you done a DRE? What about symptoms?

As commented by above survivours, the first step after a positive diagnosis is to try locating the cancer hideaways, the best one can do. CT may not be enough if those tumours are small in size (less than 1 cm). Contained cases have cure assured with surgery but metastatic disease (localized) would have more assurances in eradication via a protocol of radiation. Some guys prefer to aggressively counter the bandit with a combination therapy (both radicals in one goal) but such will increase the risks and at 70 years old one should give high credit to the quality of life "balancing with cure". Chemo and hormonal treatment are palliative ways to control the advancement of the disease. This is possible but may not be proper for those at high risk of heart complications (diabetes and high BP).

I also recommend you to try consulting a medical oncologist (specialist in PCa) for advice and second opinions on the choices based on the overall aspects; your present health status, your age and any future possible occurrence due to/caused by the present PCa treatment.
Surely you need to act the soonest but you can program a treatment to be done in two/three months without losing any in the outcomes if such were done today. Urologists typically recommend their trade "surgery" (one option). You need to get the opinion of a radiologist (another option). However, these recommendations need to be done from reliable data collected from reliable sources (DRE, biopsy, image studies, symptoms, health status), moving forwards coordinately and timely.

All therapies involve risks and side effects. You should know what to expect. Your family will also be affected so that they should help in formulating decisions. Here are some links that may be of help to you;

https://www.pcf.org/c/side-effects/

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Many of us, in particular those "believing" that are fit, are surprise when found with particulars that should not be there. Bone loss is typical so that one should verify his osteopenia/osteoporosis status (DEXA scan) because PCa likes to spread to weaker bone. Many PCa patients start taking bisphosphanates while on therapy. Heart health is another aspect in PCa guys. Keeping annual vigilance on the lipids is a must. Ulcerative colitis in affected areas may prohibit an attack with radiation so that one needs to be informed in advance (colonoscopy).

Diet and a change in live tactics become important to counter the treatment effects. Physical fitness programs and proper nutrition are important when dealing with prostate cancer issues.

Welcome to the board.

Best wishes and luck in your journey.

VGama

Carrera
Posts: 6
Joined: Nov 2016

Your recommendations and insights have set me a little more at ease as to the timeframe to act on a treatment. As I've answered in prior posts, I feel that I have almost no second opinions about my status but have asked for appointments with Oncologists. I'm also anxious for a second opinion of my biopsy. In the meantime, I've been reading as much as I can on the information provided in this forum.....thanks everyone

I should mention that I had a DRE wich didn't show anything abnormal

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

You have not mentioned where you live or what sort of medical facility you are using (which is fine of course; each person varies in what they choose to share), but in general larger facilities (intuitively) have more options in-house: More equipment, and more expertise.

If you are already established in a cancer center, often a patient can make their own appointments with other doctors, sometimes without referrals. Call a reputable Radiation Oncology provider yourself, if things drag too long.  You are sort of waiting at the moment for the Lexus dealer to get the Lincoln dealer on the line for you.... But I will say that I was diagnosed with highly advanced lymphoma in 2009, and am part of a huge hospital system that has 40 or so Oncologists on staff.  From the time my CT results came in until I received my first treatment was nearly two months. Sometiomes things are slow.

max

 

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VascodaGama's picture
VascodaGama
Posts: 3015
Joined: Nov 2010

Carrera (Porsche?)

Max comment above stricken me to reread your post. I wonder if those second opinions have been requested at the same facility. Is this doctor the "boss"?
You do understand that surgeons have high influence in hospital decisions. In fact, at some facilities radiologists are second in line followed by oncologists at the end of the ladder. None of them would "prejudice" the boss's opinion.

Biopsy analysis can be sent by courier (DHL, etc) to specialized laboratories such as the Johns Hopkins (http://pathology.jhu.edu/) which will also provide suggestions on a therapy. Dianon Laboratories (http://www.dianon.com/) and Bostwick Laboratories (https://www.bostwicklaboratories.com/Home.aspx) also provide this service. Some insurances do not cover second opinions but you can call and inquire on details. Image studies and the biopsy specimens are the property of the patient and not the medic nor the hospital/clinics. You can request that data to be sent to you or directly to the labs (or send it by yourself). Prostate cancer can become a lasting sequence of events so that it is recommendable to keep copies and a file on all gathered information.

At this moment you should value this doctor's suggestion in choosing surgery, based on the present findings (negative DRE and scans) and if you trust the data. However, radiation is another option able in providing the same level of outcomes on the same principle and findings. The difference would be in the risky side effects and one's preferences. Additional exams may provide different diagnosis which should be trustful too, if you want to use them in your final decision.
Apart from treatment risks, the Surgery is commonly linked to incontinence, erection dysfunction and buried penis. Radiation is commonly linked to urinary urgency and bowel dysfunction. Both will prejudice the ability to father children.

Only radical treatments can provide cure but hormonal therapy (HT/ADT) is useful in delaying a decision on a radical when one is not totally convinced. HT also manages to hold the bandit's advance for many years if one's cancer shows to be hormonal dependent. The negative in an approach of administration upfront is that it could interfere with scheduled image exams (the tumors will become smaller in size). Some surgeons in open surgeries also do not like operate in  such "sticky" status. One should do the exams before starting HT.
Aggressive types of PCa are also more linked to earlier refractory which means that HT alone would not be feasible for many years. HT are linked to menopause like symptoms being fatigue, mood changes, lost of libido and hot-flashes the worse. In some guys these are mild or unnoticed. The good of HT is that one improves returning to normalcy once its effects subside.

Best,

VG

Carrera
Posts: 6
Joined: Nov 2016

I'll answer both Max and you, a thank you to both I greatly appreciate all comments/suggestions.

I live in east Texas and the nearest cancer center are located in Dallas and Houston; I have not contacted any and still dealing with the local medical facilities. I must admit, for a town this size, we have very good facilities here (Tyler, TX). My Urologist is one of the top specialist and is also the head of the Urologist department.

I understand that my Urologist is 'selling' surgery, he is the surgeon, but we discussed from the date my biopsy results were available, to seek a second opinion which I'm still waiting on. There are presently no ongoing treatments, nothing has been suggested except surgery. I have also taken this up with my PC to see if he can advance my case, trying hard with the little knowledge I have.

Following and reading this forum has given me knowledge I didn't have a few weeks ago, it has been of great help and also a degree of comfort reading the many positive results; I will write about my status once new developments are available; in the meantime, thank you all for the kind replies.

.......yes VG, as in Porsche

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Carrera,

Welcome to the board.

I, too, the wife of a husband recently diagnosed with Gleson 9 and 10 (my husband is onl 60 years old) feel very grateful for VGama and Max's contributions. What I have learned in just over one week....keep asking questions and expect to have second and third opinions, only after ensuring you have gotten the right and comprehensive diagnostic testing.

Keep up your learning...you are approaching this disease with knowledge and zest...the best combinations!

leamon
Posts: 39
Joined: Jan 2012

FWIW, I had 2 biopsies 5 years apart and requested a 2nd opinion from Johns Hopkins. I got the results within about 10 days of the request. The urologist I was seeing had no options except IGRT and/or HT. I called a BT provider and a RT provider at a local hospital and got an appointment within about a week. SBRT (cyberknife) is not available at most places for a Gleason above 7. You probably should check with your cardiologist before taking HT. Mine did not want me taking HT unless necessary. I had by-pass surgury 5 yrs ago. No other heart problems. If I lived where you do, I would start by contacting M.D. Anderson in Houston or someone affiliated with them. IGRT will require 40 to 45 daily treatments unless combined with BT so the closer the better (all else being equal). I am half way thru 39 treatments with only 1 incident (had to have a cath after the 2nd treatment, and had a problem holding the 24 ozs of required water for a couple of days after).  I'm sorry you are a member of the "club".

leamon  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

IGRT is fully as effective as SBRT (Cyberknife, Varian/Novalis).  The difference is the convenience: 40 trips verses 5, an irrelevance, in my view.

In any occurence of Gleason 9 PCa, my first choice would be RT generally.

 

max

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