HealingWell
Search Close Search
☰

The rest of the story part 2...

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/27/2018 11:28 PM (GMT 0)
We have returned from the path review visit. Did not get news we hoped for. Gleason upgraded to 4+5 = 9
35% involvement, EPE+ left posterior and posterior-lateral, bladder neck + margin, bilateral SV invasion, lymph node + 1 of 9, pT3b, N1. We are pretty down, husband is convinced he won’t make it 10 years. I’m trying to be positive, but to be honest I am pretty shell-shocked and terrified right now. Doc stated to my husband that it is more likely he will die of something else, not pCa and assured me I was stuck with him for a long time - pray so. Had a baseline psa drawn today to get a sense of where we are at this point. Planning referral to a med onc. We want to be aggressive - from what I’ve researched we should be looking at ADT and chemo, plus radiation after surgical healing. Any advice appreciated at this point.
Posted 9/27/2018 11:41 PM (GMT 0)
That's not a good upgrade. The most likely combo is SRT+ADT. How long to do the ADT will be the question (12-18 months is likely). I doubt they's recommend chemo until after the SRT.

Get a good MO - one who specializes in PC.

The bad news is he's got more treatments to suffer through.

The good news is that he has a lot of options left and every reason to believe the doc about dying from something else. We are seeing a lot more men going 10+ years after a diagnosis like this.

You'll have to wait a number of months before starting the radiation, so take sometime together and enjoy life to the full.

Let us know what the PSA comes back at.
Andrew
Posted 9/27/2018 11:54 PM (GMT 0)
Thank you for the info. We are now trying to figure out the MO. Surgery was performed in Columbus by Dr. Abaza a highly recommended surgeon. Am trying to start some MO research, but feeling pretty overwhelmed at the moment.
Posted 9/28/2018 12:00 AM (GMT 0)
Yes, it's a big task. You've got time to do it right. He'll need a few months of healing before RT in any case so don't feel rushed to do it today, but don't wait too long.

and you'll likely need to be looking for a good RO too.

and maybe a nice B&B somewhere for a restful weekend...

Andrew
Posted 9/28/2018 12:03 AM (GMT 0)
I think I need a bottle of wine right now. I do think we need to get the mo as soon as we can. I would think we would want to begin ADT as soon as possible - at least from my research that would seem to be the case. I am hoping to see a nice psa drop - that would give me a little cheer. I know we’re only 4 weeks out, but it should be moving down.
Posted 9/28/2018 12:10 AM (GMT 0)
It's too soon to see the full PSA drop. Are you on a monthly test schedule?

SRT/ADT has to be done in sequence ADT first, then a few weeks later SRT. You can wait a few more weeks on ADT - see the MO first, but next week or the week after or the week after that is soon enough.

First the wine ... Then get to work.

Andrew
Posted 9/28/2018 12:15 AM (GMT 0)
some tough choices ahead, for sure, but no need to rush. get multiple opinions the best you can

tough report, but not a death sentence
Posted 9/28/2018 12:15 AM (GMT 0)
Thanks for the advice Andrew. My understanding from today was baseline psa today and the next in December (or sooner). Should we be on a monthly? Bottle is open!
Posted 9/28/2018 12:18 AM (GMT 0)
Thank you for the advice Purgatory. I am so thankful for all of you and this forum.
Posted 9/28/2018 12:28 AM (GMT 0)
Captain & Nytngale, sorry you have to go through this. I have a younger friend who experienced the same thing with surgery. Although, I don't believe it was actually recommended for him. I believe your medical oncologist will start you on hormones and monitor your progress. If there is a possibility of RT or another surgery you will find out soon. You are doing the right thing working out and staying sexually active. Hang in there and enjoy that glass of wine.

------------
68 yrs., marathon runner, PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.
Posted 9/28/2018 1:44 AM (GMT 0)
Do I understand correctly? Husband had RALP and path report shows positive node and margins? If so, you may be jumping the gun on seeing an MO. In the Shop is most likely correct that RT and ADT is the next step. You have to wait for the first post op PSA to come in before exploring that possibility. Your husband still has cure potential. Take a deep breath, take it a step at a time. There is room here for a good outcome.
Posted 9/28/2018 2:42 AM (GMT 0)
That is correct mattamx. Surgeon stated mo review first then ro consult. From my research RT and ADT would be the expected follow up therapy.
Posted 9/28/2018 3:27 AM (GMT 0)

Nytngale said...
Thanks for the advice Andrew. My understanding from today was baseline psa today and the next in December (or sooner). Should we be on a monthly? Bottle is open!

December is good for another PSA. Just do one before he starts ADT

Andrew
Posted 9/28/2018 4:24 AM (GMT 0)

InTheShop said...


SRT/ADT has to be done in sequence ADT first, then a few weeks later SRT. You can wait a few more weeks on ADT - see the MO first, but next week or the week after or the week after that is soon enough.
Ssss

Nytngale,
I agree with what InTheShop said. Just for info, my MO handles the ADT part and the RO handled the radiation. They work as a team at MSKCC. If you can find an MO and an RO who you trust at the same facility, it may make life easier on you both.
Posted 9/28/2018 10:12 AM (GMT 0)
nytngale,

This is surely a blow, and not good news. However, you doctor is right: he'll be around for a long time to come. This is a situation where there really is a consensus standard of care, so the key point is to find a treatment team that the two of you think you can work with for the next several years.

For now, do some things that are all about enjoying life in today. How was the wine?

PS: I had a conversation with my daughter (33) last evening, she just had a hysterectomy and her second ovary removed due to ovarian cancer--her pathology is clear! Anyway, she is also an RN, and her comment about her surgeon--backed up by her co-workers--was that 'he's a jerk and has a terrible bedside manner, but he's a great surgeon'. As opposed to his colleague who is a much nicer person, but only a so-so doctor. Many of us have found similar things to be true about our doctors, and decide to go with the a-hole who is the great doctor. It's nice if we can find a doc that we both like and is really good--but it's not required.
Posted 9/28/2018 10:29 AM (GMT 0)
Nytngale... Good Morning to you guys, you have had a couple of tough months that’s for sure! I would like to suggest that you read the ADT n SRT journey thread it’s up to 4 parts now n thousands of postings from guys n gals that were and are in the same diagnosis as you guys. I was in the same situation as you guys a year ago so understand how you feel. I always advise people when they are starting down this PCA path that they be their own advocate and find a good team and a very good hospital, cancer treatment center or whatever facility your completely satisfied with. The same is really true now as you look for a good RO. What the guys have been suggesting they will probably start some kind of hormone treatment first and then when your husband is all healed up from the surgery and has good control of his continence they will start radiation that will give hormone deprivation drug to do it’s job. A pretty common time is around two months for the ADT. Radiation should be at least 72gy if not more administered in 32 to 40 treatments mine was 36. There are side effects with both adt and srt some guys get really hit others not so bad walking and exercise are huge in helping with the side effects. I will refresh the ADT and SRT thread so you can read what others are going thru and realize your not in this alone. The big thing to remember is you guys now have a new normal not necessarily worse than before but more involved with the medical system for lack of a better definition. You learn to appreciate the little things more, One of the things that being involved with the system is even tho things are kinds tough right now is that we have it pretty darn good compared to a lot of people especially the kids that you see so sickly. Sure the side effects suck some days but we are still able to enjoy our family and friends and do things and for that I am very thankful. Yes your doctor was right your husband most likely will die from something other than pca lots of new treatments coming down the pike way. Hang in there keep walking and enjoying life!!

Larry
Posted 9/28/2018 6:20 PM (GMT 0)
Sorry to hear your report. This is your life so you should gather as much info as possible. If surgery was @ The James it seems that would be a good place for consult. Certainly Cleveland Clinic too. You can't do any radiation until everything heals so you have 3 months post op to go. I don't recall if you originally had a scan. My scan was ordered by my RO. It showed bone mets so radiation was ruled out. Email me if want an MO who has PC and obviously is an expert imho. Got you covered on the wine too.
Posted 9/28/2018 10:39 PM (GMT 0)
Thanks to all for the great advice. We received the baseline psa result drawn yesterday - 0.06! I’m thinking this is a pretty good number for 3 weeks out? I feel like that’s the first somewhat good news we’ve had since this all started. The surgeon said he was pleased. Surgery was at Dublin Methodist with Ronney Abaza who came highly recommended and is considered one of the best. He has affiliations at OSU and there is an mo with prostate/bladder ca specialization - doing some research on him. We haven’t discussed any recommendations for mo with the doc yet. Dublin Methodist also has an affiliation with MD Anderson. GoBucks I will email you for doc info. My husband and I want to keep this ball rolling.
Posted 9/28/2018 10:53 PM (GMT 0)
I think you’re looking pretty dang good.
Posted 9/28/2018 10:58 PM (GMT 0)
GoBucks - I failed to answer your question re scans. Pre-op bone and CT scans were clear.
Posted 9/28/2018 11:34 PM (GMT 0)
I'm just catching up with your path report--sorry it wasn't better. But you sure had a heckuva early PSA score, which is really nice to have at this point. And I don't blame you for being frazzled and your husband being depressed, but he can still do really well. We see this all the time here.

As Andrew said, it's ADT and radiation as the next step and your search for that is with an RO. (The ADT is probably sooner than later, but radiation would wait until after he's healed from surgery.) An MO could certainly be helpful if you could find one that specializes in PCa, but that's not common. (FYI, I'm blessed with one that does specialize in PCa here in Southern California. I know some guys that are remote have done phone consults with him.)

Chemo would be an aggressive adjunct treatment and you might not find an MO that would do with your husband's great PSA score. There's another poster here from Cleveland that had similar stats to your husband and all the MOs he spoke with (including Cleveland Clinic) wanted to wait to see that surgery and radiation did not control the cancer before starting chemo. Hopefully he'll see this and weigh in as he can speak to the specifics much better than I can on a second hand basis.
Posted 9/28/2018 11:51 PM (GMT 0)
Thanks Michael. The surgeon mentioned yesterday starting with the mo and the proceeding with the ro in December. I currently am vasillating between trying to be positive and abject terror.
Posted 9/29/2018 12:15 AM (GMT 0)
That is a two bottle of wine number.

Great number for 3 weeks. Hopefully the next one will be lower.

Andrew
Posted 9/29/2018 12:51 AM (GMT 0)
Thanks Andrew - hanging on to this first positive development for the weekend. Wish I could stop the clock for awhile. Definitely uncorking Number 1!
Posted 9/29/2018 1:36 AM (GMT 0)
I'm about to make cocktails for my wife and I, so we'll toast in your direction. (Ohio, I'm guessing from your reference to Columbus.) As for bouncing between terror and being positive, that's completely understandable. And I'm guessing that over time you'll be able to tip that balance toward being mainly positive.

As a fellow G9, my personal motto is "I'm cured until proven otherwise."
✚ New Topic ✚ Reply
12