Just diagnosed G9

Hi, My husband age 65 has just been diagnosed with PCA, G9, psa 4.1.
I am so glad I found this forum, reading others experiences has been helpful and reassuring. Altho my DH is calm but I am a basket case!

History: Father succumbed in 1985.

PSA:
2010 2.41
2011 2.71
2012 3.22
2013 4.16

PCP referred us to see urologist, Dr. Lee Richstone in NYC. Dr. Richstone ordered a pre biopsy MRI. Results were 1 suspicious lesion, capsule intact, neurovascular bundle, seminal vesticles and bladder unremarkable, no pelvic adenopathy.

A few days later DH had a 14 core biopsy. So glad MRI was done prior. The lesion MRI spotted came back with adenocarcinoma, gleason 9, 4+5, 50% involvement.

Other results were:
1 G7, 4+3 involvement 25%
2 G7, 3+4 25%
5 G6 3+3

So 9 out of 14 cores had adenocarcinoma :(
DH is scheduled tomorrow for a bone scan and a CAT scan.
Dr. is recommending the Da Vinci robotic surgery of which he has done over 300. He says surgery is his best option as if you start with radiation you cannot do the surgery afterwards? DH is comfortable with Dr. and feels that a 2nd opinion could come back with a lower Gleason score, but couldn't change enough for him to discount surgery. His feeling is to get it out asap.

I'm doing as much research as I can while we are waiting....we are hopeful that the scans will come back negative but anxious. Thanks for the support of this forum. Reading others experiences and the G9 thread has been so helpful.

Hopefull -- if you get a chance please read this article -- www.phoenix5.org/articles/Fortune96Grove.html

Welcome to HW, it's a great place to ask questions.

Sorry to hear about the G9. That's a bit of shock isn't it? Still it's very treatable and you have every hope for good results.

Like Ed said, I wouldn't rush into surgery. At the least you should get a second opinion from a radiation oncologist. Surgeons generally don't do surgery on the prostate after you've had radiation - it's difficult at best. The real question in my mind is, why do surgery if you know you need to have radiation? Radiation is effective at killing the PC all by itself and can be used as a primary treatment followed by hormone therapy. A number of us have had radiation as the primary treatment and never need surgery again.

Even though it's G9, you do have some time to get other medical opinions before choosing. I understand the desire to, "just cut it out now!" but that might not be the best option.

Of course, I am am not a doctor so my real advice is to get at least one other medical opinion - either from a RO or a medical oncologist who specializes in PC - before selecting a treatment course.

Hang in there, it won't be fun doing what is needed and normal will change but there's hope that in a couple of years this will all just be a bad memory.

Andrew

Sorry to hear about the diagnosis. Gleason 9 is serious business, and if you've been surfing the net you're probably pretty freaked out; lots of scary stuff there about it. The other cores you mention pretty much get trumped by the G9. They consider only the highest score.

What kind of MRI did he have? My 3T MRI with contrast was done after the biopsy, so some aspects of it were compromised. However, it pretty clearly indicated the cancer had extended beyond the capsule somewhat, that the cancer region is pretty large, and that the neurovascular bundles were involved. Biopsy showed perineural invasion of the G9 (5+4), also indicative of possible extension beyond the gland.

Reading about MRI results, I found that it's not always sensitive to see certain details, but if it does indicate something then it's quite likely to be there. Seeing extracapsular extension can be something of a judgment call with MRI, apparently. If it shows, then it's likely there. If not, then maybe not. Perhaps sometimes it's really clear, I don't know.

My urologist (high profile, thousands of surgeries) said he would do the surgery if I wanted to, and there was some small chance it would be curative, but not a very high probability. He would have to do a "wide excision", without doing "luxury things" like nerve-sparing and so on. He wasn't even making eye contact while describing it. I was interpreting this as assured incontinence and immediate 100% ED.

You might ask your urologist if he's considering a wide excision. That removes pretty much everything in the general neighborhood of the prostate, and is more likely to leave one with significant incontinence. I can't point to a study saying that, but it's my recollection from somewhere in the multitudes of studies I've looked through.

I didn't like the surgery odds, and ended up selecting IGRT by IMRT, along with hormone therapy, as my best shot at a curative option. We even radiated all the pelvic lymph nodes, since I had about a 40% chance it had spread to them without being visible on the MRI.

Whether or not it's fully contained is a huge factor if considering surgery.

Tough decision, and all you can do is look at the available evidence, get opinions you trust, make the decision and go for it.

[Edit: Peter's comments are outstanding and he has made some great suggestions, as usual. These guys were a huge help to me a year ago when I was going through these decisions!]

Redwing, the MRI report says "611NB MRI pelvis WOW CONT'
3T MRI of prostate is performed using endorectal and phase array cardiac coil.

He had this pre biopsy MRI at North Shore LIJ. It is part of a study to see if using MRI/Fusion guided prostate biopsy is an improved way to detect and quantify prostate cancer.

DH just called Sloane K. and they will call him back.....thanks again, will keep you posted.

Hope, please clarify that the involvement percentages of Pca found is that of the prostate cores and not of the prostate itself. My mri knowledge is weak am not sure of their ability to define % of cancer in gland. I know the gleason score was derived from the biopsy.

Hopeful,

Dr Samadi is a very high-profile surgeon and occasionally we will have heated discussions here that feature his name. There are a number of controversies about prostate cancer and how to avoid over-treatment of low-risk cancers, and being a very visible commentator on some of those controversies Dr Samadi is something of a lightning rod.

But his patients all speak highly of him. We have a number of members here who have had him operate on them and I can't remember any complaints.

I only mention this because if you use the forum's search feature to look for him you may find you have wandered into a food fight.

Nine cores positive means both sides. G9 cancer. That is absolutely high risk. Ask you doctor what the Partin tables or nomograms say regarding containment. Good luck.

Ed

Note: Tall Allen and I are currently exchanging emails about his numbers above. I will let you know when he has crushed me.

I can relate to Gleason 9 being a tough diagnosis to hear.

Rather than just cut it out and think he is rid of it forever, DH should consder going onto hormonal therapy to hopefully arrest the growth of his tumors and prostate while he and you educate yourselves on various options.

I always recommend getting a second opinion urologist/suregon and a radiaiton oncologist, as additional medical team members plus a medical oncologist who specializes in prostate cancer to quarterback the team with the two of you reserving the right to call the plays.

The team should not all be from the same practice to avoid the problem of self-referrals such as potential bonuses wanting to pay for brand new radiaiton equipment.

If DH does go onto Lupron, that is tough on bones so he should also have a DEXA bone density scan done to establish a baseline and to measure for osteoporosis. Then have a monthly Xgeva or Zometa shot to prevent so-called skeletal related events like bone fractures and spinal compression.

He will have to carefully monitor his lipids as what may be best to counter attack the prostate cancer may not be optimal for cardio. also regular blood work to make sure liver metrics like AST and ALT are not adversely affected by all the medications.

You are doing the right thing having a bone scan and CT scan.

One of my pet peeves is the bone scan report can often be CYA keep me out of court overly vague. In general the urologists are only marginally better at reading them than we are. So have a radiaiton oncologist walk you through the resutl sin person, physically pointing out any areas of concern on the scan itself.

Keep paper copies of eveything and CD copies of all scans. I record every session using a USB device that doubles as a recorder. you can get one on PulseTV.com for about $20.

This saves me and my spouse from having to decipher scribbled notes of terms we can't spell in the first place.

LupronJim

gunfighter said...
Hopeful,
We are a "rowdy" group but we mean well. Your husband had 9 cores positive out of 14 and I had 9 positive out of 10: Serious stuff! My uro wanted to rush me to surgery where my nerves would be removed and the wide excision would leave me permanently incontinent. I had no desire to live like that so I opted for radiation...
Hopefully you will show my short story to your husband. I do wish you well.
Bill

gunfighter, great summary with an economy of words.

We're so similar. My decision process closely followed yours, though my even my uro was not pushing surgery for me. I'm watching your progress with great interest!

HopefulG9,
Your HW name is so important, Hopeful is a great start down the prostate cancer road. I am truly sorry about this diagnosis, but I too am a G9 and was dx in January, 2010 and currently undetectable, so there is hope for you and your husband.

I was told by my oncologist once the biopsies came back with the bad news, is that I would need surgery and adjuvant therapies including hormone deprivation and intensive radiation. Once pathology came back from surgery it was worse with the cancer jumping ship outside of the capsule, one lymph node involved, perineural invasion, seminal vessical involvement, etc. Could have been worse, but not much.

Fortunately, there are so many good treatments and options and you and your husband have to educate yourself by shopping oncologists, surgeons and radiologists. If you decide to go surgery, you will have to wait six weeks post biopsies which means you have time to meet with different disciplines (surgeons and radiologists) to determine what is the best option for you guys. You will find that surgeons advocate surgery, radiologists advocate brachatherapy.

I will say from dealing with this for four years that it is true that it is much more difficult to operate if one has first gone through the eight weeks of daily radiation because of the scar tissue caused by the radiation. For that fact alone, helped me to decide to go first with surgery and get that darn prostate gland out to the land fill. i was told to expect to start radiation immediately after surgery since I was a G9.

What I found out at my six week PSA test post surgery is that I was non-detectable. I met with a medical oncologist in Las Vegas that is a very respected MO and he told me to fly back home and start radiation ASAP and start hormone deprivation. After meeting with many radiologists before surgery, I had selected the RO that I trusted my life with and met with him to start the process. FYI, the protocol is usually to start hormone deprivation weeks before they start the radiation so I went into the appt thinking I would get the shot of Lupron. I have to give him credit because he told me to slow down because I was non-detectable and my body had so much healing to do after surgery. He recommended to get a monthly PSA check and if my needle moved out of the non-detectable to begin with the hormone deprivation and then radiation.

Fortunately, I was able to go three years being non-detectable and to heal from surgery. I decided to begin the hormone deprivation and radiation even if I was non-detectable to make sure if there are any cells anywhere, they most likely would be close to the prostate bed. I have no regrets in doing both in hopes that it will give me years to come without having to worry about the monster poking its ugly head up.

The great news is that the brilliant researchers are coming out with great new drugs and treatments that follow up after surgery and radiation and are very successful in keeping the cancer in check.

There are a number of us here on HW that are G9s and you can search a post that shows all of us that are in the exclusive club.

So like your HW name, please remain HOPEFUL because there are so many treatments that can be done to help us. Please take the time to find the very best oncologists for surgery and radiation, it makes a tremendous difference in outcome and recovery.

God bless you both in dealing with this nasty cancer.

My Uro said, I have good news and bad news. The good news is you have cancer in one core only and its only a little bit; the bad news is its a G9(5+4).

That day was not a Good day! And he mentioned that I might suffer some incontinence and ED -- almost like its just a "side salad" to the main course.

After the op things did go slow; the incontinence took almost 4 months -- I can now cough and sneeze without spilling a drop.

And then there is ED.

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