HealingWell
Search Close Search
☰

Recently diagnosed, scheduled for surgery, MRI shows metastasis in lymph node and possibly tailbone

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/19/2018 10:34 PM (GMT 0)
I am on the normal prostate thread and was advised to join this one as well so here goes.

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

All the GS 9's were 4 + 5

PSA 12.8

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

Yesterday, four days before the surgery, the surgeon (Dr Chang at Stanford) 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 is asking the radiologist to confirm the tailbone at the other tests showed nothing. He wants to know if I want to cancel surgery. He says 85% of doctors would recommend no surgery in these conditions. He's not ruling out surgery. Says it's my call.

I need input fast!

69 year old male in general good health. I live in Monterey CA.

Thanks
Mike
Posted 2/19/2018 11:43 PM (GMT 0)
Rscared....welcome !!....sounds like you have had better days,,,sorry about the Dx....tough one for sure .....I`m going to wait till some of the other guys come in to help you ....will be watching ....good luck with your decisions....stick around ...David
Posted 2/19/2018 11:59 PM (GMT 0)
Welcome and sorry you need to be here. My guess is you are a better candidate for radiation and hormone therapy instead of surgery.
Posted 2/20/2018 12:03 AM (GMT 0)
Hi Mike,

I'm sorry about your diagnosis, which is a tough one. Quite often guys will not have surgery when there's a confirmed spread and jump to radiation, which can treat a broader area. But there is at least one other G9 here that had a positive lymph node and he was recommended to have surgery...I do hope he comments here.

One question I do have is whether or not you know for a fact that the lymph node is positive or it's just suspicous. Have they biopsied it? Ditto regarding your tail bone--bone scans do pick up lot of suspicious areas since they also show every injury you've had over your lifetime.

Sorry that I have more questions than answers for you...
Posted 2/20/2018 12:21 AM (GMT 0)
If there are confirmed mets, surgery would not be curative. RT would likely be better if all the PT can be targeted, but HT is likely your best bet.

I'd consider canceling, getting more info, regrouping and attacking a different way.

Andrew
Posted 2/20/2018 12:35 AM (GMT 0)
Hi Mike I can only tell you about my experience I was gleason 9 with seminal invasion and nerve invasion. The lymph nodes looked suspicious so the urologist removed 35 of them but they were clear. Right after surgery I was detectable so had ADT and then SRT now waiting till April 25th to get my psa reading. My team at Mayo wants me on ADT for at least 2 yrs so that probably is what I will do. Be your own advocate and find a good team. Wishing you the best

Larry
Posted 2/20/2018 1:57 AM (GMT 0)
Mike,

I am similar to Sky except pre-RALP, my MRI and CT scans showed nothing suspicious, even in the LN's with a GS8. Post-surgery, 3 of 7 LN's were positive (2 only micro), plus, GS upgraded to 9. Ended up with positive margins at the bladder neck, also. Followup Axumin PET Scan showed no other mets., however.

Surgeon thinks he got everything but put me on HT and referred me to an RO for adjuvant RT, which I start tomorrow. If I knew all of this before would I have chosen the same course? Probably so, because I wanted to get that portion of the cancer out of me, plus, I found out that the cancer was worse than suspected.

Of course, your tailbone met., if confirmed, complicates matters. I did not have that.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC/CT Scans 8/29 (-)
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Rsk 23.5%, Met Rsk 29.6%.
URO Consult9/11
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 (-)
Markers 1/3
Simulation 2/6
Start RT2/20

Post Edited (john4803) : 2/19/2018 7:02:05 PM (GMT-7)

Posted 2/20/2018 2:07 AM (GMT 0)
Mike: If I knew the answers I would be a billionaire. Be well and become knowledgeable. Most important don't let ANYONE.......ANYONE tell you what to do. Learn.Learn.Learn and make your decisions for yourself.

May you be well and always free from animosity.

Roger
Posted 2/20/2018 2:42 AM (GMT 0)
Hi Mike,

I'm a G9 as well who had a positive pelvic lymph node at diagnosis. It showed up on my initial CT Scan but my doctor had the node needle biopsied to confirm that there was actually cancer in it. Unfortunately, the possibility of a positive node, and more so, a possible bone lesion do throw a wrench into your plans for treatment. One thing my doctor did was to immediately put me on Lupron to stop the cancer from going further while giving me/us time to figure out what to do. You might want to ask about getting Lupron now to give yourself the benefit of the time you'll need to find a good plan. The surgeon will be there to do the surgery later if that is what's decided but it seems that you definitely need to know if the node and/or tailbone are actually involved before you can make any informed decisions. I ended up taking nearly six months meeting with PCa specialists before I had a plan I was comfortable with.

Hopefully, it will turn out that you do not have lymph node or spinal/tailbone involvement. If so, you simply make your choice based upon possible SEs from the various treatments. If you do end up with the locations outside of the prostate, there are still plenty of good options but it is more complicated and critical. You are no longer looking for what will cure you with the least side effects, but rather, what is most likely to save your life.

In my case with G9 and a positive pelvic node (no bone or distant metastasis) I choose from the start to do surgery (prostate, seminal vesicles, surrounding lymph nodes removed) followed as soon as healed from surgery by whole pelvis radiation.

Let us know what you find out. When you know whether or not there are actually sites outside of the prostate involved, we can all give you more detailed thoughts. I'm happy to talk to you here or via Email.

Bill
Posted 2/20/2018 4:21 AM (GMT 0)

schoolpsych said...
Hi Mike,

I'm a G9 as well who had a positive pelvic lymph node at diagnosis. It showed up on my initial CT Scan but my doctor had the node needle biopsied to confirm that there was actually cancer in it. Unfortunately, the possibility of a positive node, and more so, a possible bone lesion do throw a wrench into your plans for treatment. One thing my doctor did was to immediately put me on Lupron to stop the cancer from going further while giving me/us time to figure out what to do. You might want to ask about getting Lupron now to give yourself the benefit of the time you'll need to find a good plan. The surgeon will be there to do the surgery later if that is what's decided but it seems that you definitely need to know if the node and/or tailbone are actually involved before you can make any informed decisions. I ended up taking nearly six months meeting with PCa specialists before I had a plan I was comfortable with.

Hopefully, it will turn out that you do not have lymph node or spinal/tailbone involvement. If so, you simply make your choice based upon possible SEs from the various treatments. If you do end up with the locations outside of the prostate, there are still plenty of good options but it is more complicated and critical. You are no longer looking for what will cure you with the least side effects, but rather, what is most likely to save your life.

In my case with G9 and a positive pelvic node (no bone or distant metastasis) I choose from the start to do surgery (prostate, seminal vesicles, surrounding lymph nodes removed) followed as soon as healed from surgery by whole pelvis radiation.

Let us know what you find out. When you know whether or not there are actually sites outside of the prostate involved, we can all give you more detailed thoughts. I'm happy to talk to you here or via Email.

Bill

Bill,

I am assuming your insurance paid for the Chemo? Thought that you had to have distant mets. to qualify as Standard of Care, but that may have changed with the latest studies?

What kind of SO's did you have with the Chemo? My RO is wanting me to also consider Chemo, following RT and has referred me to a MO. So, I have to ponder this.

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC/CT Scans 8/29 (-)
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Rsk 23.5%, Met Rsk 29.6%.
URO Consult9/11
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 (-)
Markers 1/3
Simulation 2/6
Start RT 2/20
Posted 2/20/2018 4:38 AM (GMT 0)
john4803,

I don't actually start chemo until March 7th so no info on SEs yet. I will be posting a diary like others have done here. I had a positive pelvic lymph node but no distant mets. Yes, new studies seem to support adjuvant chemo in some cases. Whether my case fits that profile though seems controversial depending on which doctor I talk to but the positive node history seems to have been enough because my insurance company has preapproved the four chemo infusions. Additionally, I'm going to add Zytiga for the remainder (6 months left) of my 2-year ADT.

As far as your decision, if your RO/MO offer it, it will likely be similar to my case. It is on the table if you want it but nobody can say for sure if you need it. My RO says that he really believes that I am now possibly "cured" but told me that if there is a future chance I would regret not having chemo when I could have, I should go for it. I'm on the same page. Nobody wants chemo especially if you may not need it but I've come this far so I'm going to throw everything at it up front so I'll never have to say "If I would have done it then would it have made a difference?". That's me though, others may have a different philosophy of course. You need to do what your gut tells you is right.
Posted 2/20/2018 6:40 AM (GMT 0)
I don't understand why you are opening a duplicate thread. You should ask a mod to lock this one - it gets confusing with two sets of posts to read.
Posted 2/20/2018 12:57 PM (GMT 0)

Tall Allen said...
I don't understand why you are opening a duplicate thread. You should ask a mod to lock this one - it gets confusing with two sets of posts to read.

Agreed, it's confusing to all here... but there are valuable responses in both threads, and I would hate to see either one locked. Chalk it up to newbie-ism.

runningscared said...
I am on the normal prostate thread and was advised to join this one as well so here goes.

Mike - Where is the "normal prostate thread"? None of us here have a normal prostate afaik.

schoolpsych said...
My RO ... told me that if there is a future chance I would regret not having chemo when I could have, I should go for it. I'm on the same page.

Nobody wants chemo especially if you may not need it but I've come this far so I'm going to throw everything at it up front so I'll never have to say "If I would have done it then would it have made a difference?".

That's me though, others may have a different philosophy of course. You need to do what your gut tells you is right.


Bill - Exactly my thinking. Substitute my Lupron/HT for your chemo/Docetaxel and that's exactly the same decision I made about extending ADT beyond my RO's original recommendation. He was on board with my decision, though some may think I'm nuts to do so.

None of these decisions are ever easy. Good luck with your upcoming infusions!
Posted 2/20/2018 2:27 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 6:13 PM (GMT 0)

schoolpsych said...
john4803,

I don't actually start chemo until March 7th so no info on SEs yet.

Bill, my Lupron brain missed the obvious! turn

My thoughts go to why even do RT, in my case, since my RO wanted me scanned, by Axumin, for the very reason that, if I had distant mets., he was going to send me directly to the MO, instead.

These are questions for my RO and the MO I have been referred to for possible Chemo.
Posted 2/21/2018 10:54 AM (GMT 0)
Mike,
I'm kind of similar, gs 5+4=9, I had surgery scheduled for 1/22/18 but I got a psma/pet scan (new technology, it lights up the cancer) and it showed a lot of pelvic lymph nodes invaded, including a couple that surgery could not reach. So I canceled surgery and started lupron and zytiga instead (zytiga was just approved for advanced hormone sensitive pc) and that should stop it while I figure out what to do (and shrink my prostate which is really big].
The options seem to be surgery, followed by radiation, or else radiation without the surgery. It's not clear if surgery would add that much, though it would get hopefully all but 2 of the bad lymph nodes out.
Have they suggested a psma/pet? It could confirm the node and tailbone status.
Also, can they possibly radiate the tailbone to get rid of the met there? There is a new trend of trying to cure what they call oligometastatic cases (oligo means small number).
Best of luck, let me know what you decide. You might want to check out the support groups at El Camino hospital, you qualify for the advanced group.
Posted 2/22/2018 2:12 AM (GMT 0)
MRI confirmed spread outside Prostate; met in tailbone; probable met in one lymph node

Cancelled RP for now
Have scheduled appt with Radiological Oncologist

Thanks for all the support and advice. Please don't stop.

Mike
Posted 2/22/2018 3:01 AM (GMT 0)
Not what you wanted to hear, but what you were expecting. Glad you canceled RP.
How soon is your appointment with RO?
You should probably see an MO at this point too and get started on ADT.
Posted 3/19/2018 10:54 PM (GMT 0)
My husband was diagnosed 10/17, G9, lymph nodes involved but no bone mets. No surgery for him. Just completed 6 rounds of Taxotere, on Lupron and getting ready to start radiation in about 6 weeks. Hitting it with the kitchen sink, if you will.

This treatment plan seems to be working for him - PSA is down to 0.1, lymph nodes are no longer swollen, and still no bone mets.

Hang in there and keep fighting!!
Posted 3/21/2018 10:22 PM (GMT 0)

carattop said...
My husband was diagnosed 10/17, G9, lymph nodes involved but no bone mets. No surgery for him. Just completed 6 rounds of Taxotere, on Lupron and getting ready to start radiation in about 6 weeks. Hitting it with the kitchen sink, if you will.

This treatment plan seems to be working for him - PSA is down to 0.1, lymph nodes are no longer swollen, and still no bone mets.

Hang in there and keep fighting!!

carattop,

Fantastic results!

How were your hubby's Side Effects on Chemo?

My MO says, for me, the Chaarted study does not show any value for Chemo because I don't have any distant mets. (that show up any) and insurance would probably not pay for it, also.

I am half way through with my IMRT/IGRT treatments and hopefully that will be enough?

69yr,1948 Troy MO-W of St. Louis
PSA 3.2 7/08
PSA 51.2(7/11/17)
DRE hd lft, 31g 7/24
Biopsy8/11 No PNI GS 4-8s, 4-7s/12
NUC/CT Scans 8/29 (-)
Prolaris 9/11 T2b, 3.8/10, 10yr Mort Rsk 23.5%, Met Rsk 29.6%.
URO Consult9/11
MRI 3T Ca in gland?
RALP11/15
PATH11/16
T3b,GS 9
70G Pc 40%
PLN+Rt-1/1,Lt-2/6
+Marg-apex,ureth,blad nk,SV
Lupr/Cas11/21
Axumin 1/2/18 (-)
Markers 1/3
Simulation 2/6
IMRT/IGRT 2/20 - 4/16/18
Posted 3/21/2018 11:48 PM (GMT 0)
John
I’ve been down that same road! My last Psa reading in January was .175. I’m waiting for next reading in April to decide next steps. Still on ADT3 and xgeva. Good luck!
Bob
✚ New Topic ✚ Reply