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Newly diagnosed, scheduled for radical but might have some metastasis, should i cancel surgery

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Posted 2/19/2018 6:15 PM (GMT 0)
Hello

In December 2017, I had a biopsy of the prostate. Results were:

6 sites positive and 6 benign

92% GS 9
8% GS 8
50% GS 9
68% GS 9
55% GS 8
28% GS 9

PSA 12.8

Had a CT Scan showing no metastasis in January
Scheduled for Robotic Radical prostatectomy on Feb 23
Had a Bone Scan showing no metastasis Feb 15

Yesterday, four days before surgery Dr calls to say on 15 Feb, an MRI found issues in one lymph node to the left of the prostate and possible metastasis in the tailbone. He wants to know if I want to cancel surgery. He says 85% of doctors would recommend no surgery in these conditions.

I need input fast!

69 year old male in general good health.

Thanks
Mike
Posted 2/19/2018 6:47 PM (GMT 0)
In my opinion a very good suggestion.

Surgery is appropriate when it will be curative. The amount of G9 and high PSA is very indicative a high risk situation better treated by a combination of external beam radiation (IMRT/IGRT) brachytherapy and ADT medication. This is the best combination to pursue as it is much better than surgery for cancer control and with far less significant negative side effects. The last thing you want is a combination of surgery and radiation as that presents the worst side effects in most men.

Time to get the first shot of Lupron or Eligard and start searching for some great radiation oncologists.
Posted 2/19/2018 6:47 PM (GMT 0)
Yes, definitely cancel surgery for now - you can revisit later whether you want it to debulk the cancer. The first thing you should do is (1) talk to a medical oncologist rather than a urologist. and (2) start on Lupron and Zytiga with Prednisone or enter a clinical trial. Zytiga has recently been approved for this purpose, and Medicare will cover it. There are also clinical trials with new drugs like darolutamide and other combinations.

Below is a link that describes your options, including surgery. The last paragraph shows the current clinical trials. You should discuss each of them with a medical oncologist before deciding on your next step.

/pcnrv.blogspot.com/2017/06/newly-diagnosed-metastatic-m1-but-still.html

Also, consider getting the following genetic test:

/pcnrv.blogspot.com/2018/02/inexpensive-screening-for-germline.html

And where are you located? We may have some medical oncologist recommendations.
Posted 2/19/2018 6:48 PM (GMT 0)
Mike—
Sorry you find yourself needing help from this forum, but welcome, you’ve come to a good place for advice and support.
I’m going to refrain from giving an opinion myself — will leave that to the G9 crowd and a few other very knowledgeable forum members. You’ve given us a lot of important information already. Could you tell us where you’re located? Also, the Dr who called you with the MRI result — is that your surgeon or a different doctor? Aside from discouraging surgery, what treatment did he recommend?
Hang tight, you’ll get some good advice from others here soon. And take deep breaths, you’ll come through this fine.
Posted 2/19/2018 7:06 PM (GMT 0)
I am located near Monterey Ca. The doctor I spoke about was my urology oncologist at Stanford Medical Center Dr Chung.

Mike
Posted 2/19/2018 7:34 PM (GMT 0)
Stanford has some excellent doctors. I suggest you speak to Sandy Srinivas - she is a very highly regarded medical oncologist and has been an investigator in several important clinical trials mentioned in that article. Here's a link with her contact info:

/med.stanford.edu/profiles/sandhya-srinivas
Posted 2/19/2018 8:59 PM (GMT 0)
Mike,
As I remember Dr Myers had something similar for himself and chooses radiation and ADT. That was around 19 years ago and he still alive and active. So like Tall Allen said, cancel surgery. If I knew what I know now , I would have not done the surgery although my situation is different than yours.
Posted 2/19/2018 9:03 PM (GMT 0)
Just to be clear, I think radiation is inappropriate now as well. The discovery of both lymph node and bone metastases takes both surgery and radiation out of the current picture for you.
Posted 2/19/2018 9:25 PM (GMT 0)
Hi runningscared. That screen name summarizes where a lot of us have been! If you've been surfing the web, you're probably properly spun up by now. Keep in mind that a lot of the information is out-of-date; many people with G9 cases do well with modern treatments. Having said that, you do have a serious situation on your hands. Does the biopsy report say anything about G9 4+5, or 5+4? It doesn't matter a lot, but it's interesting.

As one new to this forum, one can't know one member here from another. Our forum member Tall Allen is very knowledgeable, and typically says things rather forthrightly. His links are typically helpful, and for what it's worth I support what he's saying. None of us are doctors, but some do have more info than others.

Personally, my case was not apparently metastatic yet and I chose radiation with 3 years of Lupron + Casodex (hormone therapy). Surgery is the realm of urologists, radiation is the radiation oncologist's, and systemic treatments are by medical oncologists. Surgery wasn't likely to be curative for me, so I went with radiation. It sounds like yours may already be in the medical oncologist's area.

I've added you to a thread we have running here for G9 & G10 cases. It's meant as a gathering place for those facing this diagnosis, and a way to look for others possibly in similar situations. Here's a link to the thread:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

Welcome, and I hope you learn enough here to help calm your nerves. It is scary, to be sure. Once you settle on a treatment plan in which you're confident, the stress goes down a lot. All the best....
Posted 2/19/2018 10:12 PM (GMT 0)
My GS 9's were all 4+5
Posted 2/19/2018 10:28 PM (GMT 0)
Running, I'm not in the high risk club, but I want to welcome you to our corner of the internet. There are plenty of guys here who came in at G9 who have been getting along well for a long time, and there is no reason it won't work that way for you.

There are some guys who have had surgery with the G9 diagnosis---but I'd suggest with the change to a metastatic finding, that your idea to move from surgery to radiation might be the right move. I'd add my encouragement to find a top radiation center and a full team that includes a radiation oncologist as well as a medical oncologist, and they will probably start you on hormones right away to knock things in the head while you evaluate your options. And, you do have options. And with that top team, you'll figure out the right combination for you.

Keep hanging around, and keep bouncing ideas and worries off of us, and we'll keep you off the ledge.
Posted 2/20/2018 10:16 AM (GMT 0)
Hi runningscared,

I don't think you should rule out surgery or radiation completely, but you should definitely delay the surgery for more investigation. MRI of lymph nodes has high specificity, but low sensitivity unless a more specialized type of MRI is done - with ultra small superparamagnectic particles of iron oxide. This means that your lymph node is quite likely cancerous, but with low sensitivity there could be more nodes that are cancerous.

"Possible metastasis to the tail bone" seems to me that your doctors aren't sure from the MRI. This is important because bone metastasis would likely rule out curative treatment like radiation or surgery. However, if further investigation determines that there is no bone metastasis, you can still be treated with radiation or surgery that targets both the prostate and lymph nodes.

What your doctors may suggest is a PET/CT or PET/MRI scan of your whole body and there are several advanced versions which are quite good at finding prostate cancer in bones. These types of PET scans typically find more areas of bone metastasis than MRI. If the PET scan is negative (including the tailbone), that is the best result because you can seek curative treatment. However, if the PET scan confirms the tailbone met or finds more mets, you will know definitively that you can rule out surgery and radiation. There is also the possibility that the PET scan will find more lymph nodes that are positive and the cancer burden could be so high that there is no point seeking curative treatment.

It would help if you could share details of the MRI. Your ability to seek curative surgery or radiation hinges on definitive diagnosis of the spinal met.
Posted 2/20/2018 2:29 PM (GMT 0)
Mike if possible you should combine your two threads. There are good comments on both threads would be nice to get them together
Posted 2/20/2018 2:54 PM (GMT 0)
and then on top of everything else, the bills start to roll in.. so as your speaking to all of these medical people make inquiry's about foundations that help with co-pay cost,, there are several and they don't all cover prostate cancer.. but, one thing for sure, it is much easier to get treatment if everything can be paid for up front.. it seems to me the only thing these foundations require is that you fill out their applications and keep them updated .. good luck and let's hope for a beautiful spring !!!
Posted 2/20/2018 6:52 PM (GMT 0)
I am not a doctor and I only know what I have experienced or have read here on these forums but I have seen where they are questioning the practice of not doing surgery for people that are metastatic or possibly metastatic. I had RP and still had a PSA of 9.61 after. I do still feel glad that they removed the mothership of the cancer though. Even the surgeon said he would not have done it if he knew I was going to have persistent PSA. There are some researchers out there that think it is still good to remove it because it could be where most of the stem cell cancer is. Things are changing every day and I can only say if you choose not to have the surgery decide with as much research you can do. Also it is good to know that if you have a persistent or recurrent PSA post surgery you still have radiation and chemical therapy to use after. Best of luck with your decision and trust that at this stage you have a lot of future ahead of you.
Posted 2/21/2018 12:27 AM (GMT 0)
Mike tough news we heard similar and G 9 etc. You will get great help support encouraging words suggestions on this forum. Seriously a wealth of knowledge when you feel scared lost and confused. these guys are here to help and care. You are in my thoughts
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