HealingWell
Search Close Search
☰

GS 9 and overwhelmed

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12 3 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/12/2017 2:20 PM (GMT 0)
Recently diagnosed and joining a club nobody ever wants to join. I'm looking for good advice and it seems there's plenty to be found here.
So to start, PSA 12. DRE prostate firm. Sent for a biopsy. When I got the results, it floored me. 10 of 12 cores came back cancer. GS9 (4+5)
Perineural invasion present. I have a bone scan and ct scan scheduled for today in fact. Urologist told me I will need surgery to have prostate removed. Since In my mind, I don't want any more surgeries, I had a triple bypass done 8 years ago, I'm looking for options. I have spoken to MSK in NY and I have already sent them my biopsy and medical records. The results of the CT SCAN and bone scan will also be sent to them. They said once they receive the scan results they will contact me and start discussions on plan.
Am I covering my bases? Is there anything else I should be doing? I'm completely overwhelmed at this point. Frustrated. Pissed. You name it. My daughters don't really understand the amount of fear I have right now.
Posted 1/12/2017 2:48 PM (GMT 0)
Dogdays,

Welcome to our corner of the world.

The common options for that gleason level are basically surgery or radiation treatment of the prostate & immediate surroundings. But your age and physical condition have to be considered in that plan as well. Have you read through the sticky thread at the top of the forum? It had a lot of information from those who have been down the road before you.

My start involved talking to several surgeons and multiple radiation facilities (including seeds, proton, and photon) before I made a decision. The most important advice today is to sit down and breath deeply, then address this as a project. You'll have a list of things to ask, things to do, and doctors to see. But do all of this without crisis mode. Your biopsy says you need to do something, but allow yourself some time to do that from an informed position.

Others will be along shortly with their thoughts. Remember we are here to help as we can, and listen to you vent if we can't.
Posted 1/12/2017 2:50 PM (GMT 0)
Dog days

Sorry to hear that you've been diagnosed with PCa. Everything you are feeling is absolutely normal.

MSK is a great place. I would recommend a meeting with a radiation oncologist. Also have your biopsy slides rechecked.

Like you, I didn't want surgery unless absolutely necessary.

You might want to consider the triple play

ADT - Lupron; beam radiation; then a radioactive boost like cyber knife, HDR or LDR

Try to relax. Despite the significance of a Gl9, there are treatment for you that will work

Good Luck

Al
Posted 1/12/2017 2:56 PM (GMT 0)
Thanks 142 and manfred. MSK told me they will need the biopsy slides and reports once they get the scan results. I'm 63 and dealing with heart issues and breathing problems also. Those, along with related after effects, are the reason I would look to avoid surgery. But, in the long run, things will be what they are. Surgery, radiation, hormone treatment or a combination.
Posted 1/12/2017 2:56 PM (GMT 0)
Good that you are doing the research and not rushing to surgery. You are high risk and surgery is not the best if there is also a prospect of needing radiation. In many high risk situations a combination of Brachytherapy, external beam, and Hormone Therapy is the best way to go for the best cancer control and lowest side effects. A great website to learn more about radiation options is www.cetmc.com by Dr. Jeffrey Demanes the pioneer of High Dose Rate brachytherapy. Excellent information with historic results.

There is no magic to surgery and I agree you are in a higher risk situation and would do well to avoid it. Of course, a surgeon is generally going to suggest surgery, that is what they know.

There is a great group of guys that are high risk G9 and they have a thread for your group. A lot of them are doing very well and can provide you with great information.
Posted 1/12/2017 3:07 PM (GMT 0)
If you don't want surgery the are multiple options to treat you as well. Fire your surgeon...purely on the reason that he did not mention the other options...I don't care if you have been seeing him for years...whether you play gulf with him on wednesdays...MSK is an excellent Medical center...they will look at your slides and confirm gleason score..and provide you with the options available... I did not see your age in post...Im thinking late 60's and you have probably had the cancer for over 10 years...fill us in statistcs like you see at the bottom of otheres post...read/study scardino's and walshes books on Pca...be your own advocate...you are not gonna die from this...be ware of advice from forums like this...mine included...we be smaat...but we ain't doctors...even when we go to great pains to tell you we ain't....I bet you're feeling better allready from taking the first step of reaching out... it will get better...you will have ups and downs...but it is really only a season of trial...you will come thru a better man...you will see that...stay with us... ps a bunch of posts have been written as I posted...I see your age..sorry if I aged you...gee you don't look a day over 57...tee hee.
Posted 1/12/2017 4:24 PM (GMT 0)
Hang in there Bro, you will get good advice from the guys here and also read the stickies. Just don't jump too quick into one course or another. Surgery may, or may not be the right course for you. There is at least as good a chance that it is not. But I will let others more expert help you with that. I would think at the very least you would need some other opinions from non-surgeons. And of course, a 2nd opinion on your slides per the stickies.
Bill
Posted 1/12/2017 4:31 PM (GMT 0)
Let me add my welcome to the club, Dogdays. My diagnosis wasn't anywhere near as heavy as yours (see signature below), but I'm sure the shock was the same. You've received some great advice, though. Yes, your G9 is high-risk disease, but as Bolo said, it has probably been growing for some time, so take a bit of time to learn and decide which treatment is best for you.

In many advanced cases, surgery is taken off the table if they believe that you would need radiation anyway after surgery. Why ask for the side effects of two treatments if one will work just as well?

Also, at the risk of being flamed, I'll suggest that when you read Dr. Walsh's book, remember that he is a surgeon. When I read his book, I found it to be very helpful about prostate cancer in general and surgery in particular, but I found his coverage of radiation treatments almost dismissive. Along with that, you have the typical publication dwell time, such that in his most recent edition he calls some radiation treatment modes "experimental" when they have been in common use for several years.

You sound like you still have some living you want to do. Do yourself the favor of doing your homework about any and all potential treatments (and I believe that MSKCC is a great place to find out which ones may be applicable), then choose the one that is right for you. There are probably folks here who have used any of the treatments you may be offered, and they are really great at sharing their experience and knowledge.
Posted 1/12/2017 4:44 PM (GMT 0)
Welcome to HW, sorry you need to be here.

You need to get a second opinion from a radiation oncologist. Radiation treatment might be just the thing. Avoids surgery, but is a effect. I went that route because I didn't want to do surgery.

In your case it's likely to be a combo of RT and HT.

I know the news is a kick in the head, but try not to panic and don't let them force you into a treatment plan.

Andrew
Posted 1/12/2017 5:17 PM (GMT 0)
Sorry to hear about your diagnosis. I'm another G9 (but with much fewer positive cores) and we have the most difficult path, but it is one that can be navigated successfully.

Getting the results of your scans will be important, although I'd guess that with a PSA of 12 they won't show anything. In general, surgery typically isn't recommended for high-risk cases like yours since there is a very good chance you'll need follow-up radiation. To that end, many of us high-risk guys like me start with radiation, which can treat a wider area than surgery. I think it would be important to talk to a great radiation oncologist--sounds like you're at MSK so you should have some good choices.

Good luck to you and let us know how we can help.
Posted 1/12/2017 5:38 PM (GMT 0)
Sorry you need to be here.

Definitely talk with MSK Radiation Oncologists.

You have a high grade disease GS9 with very high volume 10 of 12 cores positive.
Chances are your cancer is out of the prostate, but hopefully still in the regional area.

With a PSA of 12 the bone and CAT scans may not pick up anything?

You may want to try and have a newer type of scan to make sure you don't have any METS outside the regional prostate area.

MSK has a great reputation!

Bobby Mac
Posted 1/12/2017 8:21 PM (GMT 0)
Hey Dogdays - Assuming that you're going to be talking to RO's at MSK at some point, you should try to get hold of Dr. Zelefsky or Dr. Kollmeier (she did my LDR brachy there).

Try to stay calm - I know it's very difficult.

CK
Posted 1/12/2017 8:50 PM (GMT 0)
Hi Dogdays. I've added you to the illustrious roster on the G9 Crew thread, and I see you've already found that one.

Just learning one has cancer is shocking. To further get the G9 diagnosis, to the degree you have, takes it to the next level. The fear is an entity, palpable. I think I could hear the earth rotating the first night after I got the news. Your reaction is very normal, and not to be belittled. You may be finding it hard just to keep breathing right now. It will get better.

You'll probably find that it gets easier once you begin to investigate and understand the treatment options. Your initial scans are likely to be negative, but they always do them for G9 cases anyway. The internet is full of stuff that will also scare you about G9, but you'll also note a lot of it tends to be a bit old.

The guys have already given you some good suggestions. Are you planning an MRI to look for staging status? With that many positive cores of G9, it's pretty unlikely that it's still contained within the prostate. Mine was marginally Stage 3 on diagnosis, and the surgery would have been rough ("wide excision", no "luxury things" like nerve sparing), so I ended up choosing radiation and hormone therapy. I had PNI too, just adding to the likelihood of extracapsular extension, but PNI isn't a big independent risk factor. It tends to be associated with high Gleason scores, but doesn't mean much by itself.

Hormone therapy rather sucks, but I got through 3 years of it. You do what you need to do. The day of my first hormone shot took a colossal act of will just to get my butt off the sofa and drive in for the shot. I was paralyzed with fear and loathing, and finally talked myself into doing it. The first radiation therapy session, I had a brief fantasy of jumping off the table and running out of the room! This stuff plays with your mind.

We're here to help you through this. I'm not going to give you happy platitudes, or stiff upper lip cheerleading. You've just heard very hard news, and you'll possibly be in a dark place for a while. Your friends and family will not, can not, understand your emotional state. They really can't. Until you've looked into that yawning chasm of fear yourself, it's just not possible. It's ok. They're scared in their own ways, and don't really want to face it themselves.

Keep us posted as you learn things. We can help you with some questions you may want to ask doctors too.
Posted 1/12/2017 8:53 PM (GMT 0)
There are few institutions that offer one-stop shopping, but Memorial Sloan Kettering is as close as they come. Michael Zelefsky can certainly run down your options for you. The one exception is that they are not renowned for HDR brachytherapy (probably because Zelefsky is the best at LDR brachytherapy).

The best results we've seen are from a combination of brachytherapy, external beam and hormone therapy. Of course, the extra radiation adds to the toxicity, so there is some trade-off there. Some are using SBRT or HDR brachy as monotherapies in an effort to reduce those side effects, but that is so far experimental.

While it is rarely a good idea to have surgery alone for high risk PC (because surgical excision stops with the prostate capsule), some urologists advocate surgery immediately followed by external beam radiation. This combination compounds expected side effects enormously. There may be rare instances where it is justifiable. There has never been a randomized trial comparing the two approaches, but the database analyses so far favor initial radiation:

For very high-risk patients, EBRT + BT is superior to surgery or EBRT only

But I'm getting ahead of where we are. Let's see first what the bone scan says - that can change the therapeutic options considerably.
Posted 1/12/2017 8:53 PM (GMT 0)
Thanks to everyone for all the useful feedback and encouragement. I should have scan results on Monday. I'll make sure I update things when I get the results.
Posted 1/12/2017 9:44 PM (GMT 0)
MSKCC might not do HDR brachy, but they are doing high dose IGRT, if that might be an option.

I had it done there in December for a liposarcoma recurrence. They only have one machine that supports this method, but I was able to get scheduled on it for 5 consecutive days on short notice.

The radiation oncologist I saw was Josh Yomada, and the nurses and techs all loved him. They kept gushing about how I had the best radiologist in the place. However, I don't know how specialized he is. I know he does a lot of sarcoma work, but he might not do prostate work.

Best of luck. I'll be back there on 1/31 for another CT scan and likely to schedule another liposarcoma surgery. It really is one-stop shopping for cancer care. I make the trip from VT to NYC regularly due to the quality of care I get there.
Posted 1/12/2017 10:26 PM (GMT 0)
Dmlvt
I looked up Josh Yamada at MSK. He shows prostate cancer as one of the diseases he treats. I'll keep his name in mind when I find out what my options might be. Thanks.
Posted 1/12/2017 11:01 PM (GMT 0)
Hi Dogdays. I'm just checking in as a fellow G9 guy to say welcome and sorry you have to be here. As you can see from my signature, I was positive on 8 of 12 cores (6 of which are G9). Also ,I just ended imrt and am on HT for 2 years. I wanted surgery right away and was freaking out and just wanted the thing taken out. Probably the most normal response one has when he hears PC.
I was fortunate to find this forum which helped me as my treatment option became limited as to SE issues. Also came to the realization that as a G9 and the risks of the PC already outside the prostate I didn't want to risk having to go through multiple treatments and end up with more SE's.
The more questions you ask and the more you can learn about high risk PC the better. Just know that there are quite a few of us high risk guys around that can empethize about how you are feeling and we are here to support one another.

Can't add much more at this time as you're just starting. More will be revealed soon by the scans.

Keep checking in and if you want to rant ,rant. If you want ask questions ask questions. If you want to cry, cry. Believe me , I've done all the above!

The Artistic One - Mark
Posted 1/13/2017 12:42 AM (GMT 0)

Artist Mark said...
Keep checking in and if you want to rant ,rant. If you want ask questions ask questions. If you want to cry, cry. Believe me , I've done all the above!

The Artistic One - Mark

He's not the only one who has gone through all of the possible emotions in "public" here at HW-PC. Me, too.
Posted 1/13/2017 1:04 AM (GMT 0)
Sorry for your diagnosis, and good luck to you in your choice of treatment . We were in your spot last year. We have learned that what works for one doesn't work for everyone. Everyone's PC is different. Dan's is crazy aggressive and didn't respond to the Lupron or Taxotere, but seems to be responding to Jevtana and Zytiga at least for the moment. When his numbers are dropping we don't obsess over every ache and pain, but the minute they go up even the slightest, we're right back to worrying. It takes over your life for a few months, then just becomes your norm once you're into a routine as far as treatments go. There are so many treatments available now compared to a few years ago, we try to stay optimistic and not let it keep us from living our life. There's always someone we can look to whose situation is worse than ours. Hopefully your scans will show the PC is contained and will make your treatment options easier. Lots of good advice on this board.
Mary
Posted 1/13/2017 7:25 AM (GMT 0)
Redwing
You had mentioned something about "The guys have already given you some good suggestions. Are you planning an MRI to look for staging status?" Being new to all of this, I need to ask? Is there a specific type of MRI I should be asking about?
Posted 1/13/2017 10:24 AM (GMT 0)
Welcome Dogdays

I have really good news, you are in great shape for a 90 year old man. Heart disease- check, heart bypass surgery- check, prostate cancer- check. Yep, most 90 year olds have been there done that! You are just 30 years ahead of the game. I am 66. Five way bypass 24 years ago, prostate cancer surgery 9 and a half years ago, salvage radiation 18 months ago and most importantly, I am living life as though I am going to reach 90 years old. You are doing the things that will give you the best chance at living to be an old man as well. You have gotten a very, lvery warm welcome here. These men have walked the walk. They give great support and knowledgeable information. Count each day as a blessing,in time,l share from what you learn to help others, trust your decisions and love those around you. Try not to let the disease rob you of joys on the journey. You are only at the beginning of what could be a very long marathon. You are doing all the right things to be in the winner's circle.
Posted 1/13/2017 11:30 AM (GMT 0)
DDays...got here late , but wanted to welcome you just the same!.....all the guys here got your back....this forum is the real deal.....I`m a radiation guy and DO hope you consider this ...and like JNF said, the triple play is something to really look at .......great posts by the guys here....I even understood the Bodats!.....David
Posted 1/13/2017 2:58 PM (GMT 0)

Dogdays said...
Redwing
You had mentioned something about "The guys have already given you some good suggestions. Are you planning an MRI to look for staging status?" Being new to all of this, I need to ask? Is there a specific type of MRI I should be asking about?

A "multiparametric" 3T MRI can show a lot of detail within the prostate. Mine showed pretty clearly the "bulging capsule", neurovascular bundle involvement, and some other features that indicated Stage 3.

With that kind of MRI, they look at the tissues in different ways, some pretty techy stuff involving different weighting methods, and a contrast agent's behavior. It took about an hour in the machine, with an IV push about 3/4 of the way through for the contrast.

3T is the strength of the magnet in the MRI. There are other types with lower strength, but the best detail is with 3T.

Ask your doctor. Without staging information, the treatment decision is much less clear.
Posted 1/13/2017 3:03 PM (GMT 0)

Octorobo said...
Welcome Dogdays

I have really good news, you are in great shape for a 90 year old man....

That's pretty funny. At the outset of hormone therapy I had my testosterone checked for a baseline. Turns out it was about normal for an 85 year old guy. But I was only 55, so yep, about 30 years ahead of the game!
✚ New Topic ✚ Reply
1234