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Hi all. A late introduction.(Update with post op Pathology)

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Posted 1/14/2017 3:36 AM (GMT 0)
Well hello all, I've been meaning to do this and finally I am. My story so far. Had a routine physical back in July 2016, my PCP decides to do a PSA test as part of it without telling me (glad he did). At the time I was 45 years old. PSA comes back at 5.58, he breaks the news to me, I'm not too concerned about, he says we'll check it again in 3 months and see where we're at, in the meantime he refers me to a urologist. I see the urologist and explain to him that I have had pain in the prostate area before which was diagnosed as prostatitis around 12 years ago. He prescribed flomax for me does the ole DRE, and I leave (said he didn't feel anything). I follow up with another blood test in early October, this time PSA is 4.22, I'm happy it came down but getting a little anxious that it's still high. Urologist does not seem too concerned, but I tell him I can't live not knowing if I have cancer or not. Biopsy scheduled for 10/7/16, had this enjoyable experience and now it's time to wait for the results.....unfortunately for me my healthcare provider has a website where you can access all your medical records, and wouldn't you know it, my biopsy results where there. So I found out I had cancer 3 days before my scheduled doctors visit. Good thing my wife was home, I was a wreck. 5 of 12 cores positive, bi-lateral, 3+3 Gleeson for all cores. Urologist recommends prostatectomy, and refers me to a Dr. Tewari in NYC. I consult with a few doctors and I opt for the RALP, and go with Dr. Tewari, since he seems to be the rockstar of the Da vinci RALP. So I waited and stressed, had a 3t MRI in between, which showed no extra prostatic extension, no perineural invasion, I guess that was good. Fast forward a bit, surgery performed on 1/9/17, and here I lie in bed writing this with my WONDERFUL wife sleeping next to me and this horrible, horrible, evil tube coming out of my private part. I have to say, I was not prepared for the mental and physical toll this is taking on me. All of a sudden I'm depressed, feel like crying every time I see my kids, 12 and 8. Oh and how can I forget the constant urge to pee, even though I have a catheter in! So now I wait again, catheter removal on 1/18/17 and probably pathology reports (very scared about that). Just wanted to introduce myself, and join the club NOBODY wants to be in. Take care all, and I'll keep updating. shakehead shakehead

Post Edited (Jumpy_Wolf) : 1/27/2017 2:42:35 PM (GMT-7)

Posted 1/14/2017 4:30 AM (GMT 0)
Welcome JW, glad you found us. It's a great place to learn no get support. I'm a Tewari graduate as well. He's very good, as you likely know, and a good human being as well.

It's a tough surgery, but You will see the day your catheter comes out, your recovery will speed up, and you'll feel like a whole different person. Good luck with the path report, and keep us posted.
Posted 1/14/2017 6:07 AM (GMT 0)
I think wolves are wonderful and woefully misunderstood, even jumpy ones. So warm welcome to HW Mr. Wolf, and best wishes for a speedy and full recovery on all fronts, especially the parts in the front smilewinkgrin
Beth
Posted 1/14/2017 12:08 PM (GMT 0)
Jumpy, welcome to our club. Well, if you had to do it, Tewari is one of the best. Once the cath is out in a few days, things will start improving. Keep walking as much as you can. Take your time, don't rush it. In a few weeks, you'll start feeling lots better....but remember you have had major surgery, and it takes time.

Let us know what your final pathology report says. Let's hope your stay with us is brief.
Posted 1/14/2017 12:10 PM (GMT 0)
WELCOME JW !!!! OK so your probably in your recliner.....thinking about life and .....and the future. So many things running around your brain.....we all know how your feeling and again welcome you to this unwanted but wonderful forum ! It certainly sounds like you are well on your way to a positive recovery and many years ahead to enjoy all the things that are so important to all of us. G6....your a lucky man and to have such a good support team at home,you have it ALL !!!! .....best wishes ~David
Posted 1/14/2017 12:32 PM (GMT 0)
JW, I'm a couple of weeks ahead of you, my surgery was on 12/30/2016.

The first issue is getting control of your mind, it's a powerful thing, and can do great things for us, or take us to very dark places. I've been through what you are dealing with, there are a lot of emotions with this process.

I have a favorite quote, "Worry is a darkroom where negatives are developed".

Everything anyone will say to you is easy to say, and harder to do, but you can do it. You have to break all of this down, it is like eating an elephant, if you worry about all of it, you won't make it, if you focus on one bite at a time, it gets much easier. You had major surgery, your focus right now is the post op recovery, caring for your incisions, and dealing with "Tommy the Tube". There is no question, Tommy sucks, big time. I got Tommy out a week ago. So your first challenge is to buck up and power through to the 18th, one day at a time, look for the bright spots in every day. All of this is a rehabilitation process, once I realized that, things got a little easier for me. Much like a torn rotator cuff I dealt with 3 years ago, our recovery will take a few months, it's OK, but you need to mentally prepare yourself for it, frustration is just a waste of time and energy, refocus that on your rehab.

Besides dealing with Tommy, how is the rest of your recovery? Are you off of pain meds yet? Regular? How is your diet? All things that are here right now, hopefully you are doing well with all of them.
Posted 1/14/2017 12:39 PM (GMT 0)
Wolf -

Sorry you need to be here!

You had a top surgeon and things will fall into place.

Gleason 6 without high volume disease - you will do well!

Bobby Mac
Posted 1/14/2017 12:44 PM (GMT 0)
Welcome to the other side! Walk frequently and stay hydrated.
Posted 1/14/2017 4:59 PM (GMT 0)
Welcome to the group, sorry you had to join but you came to the right place.
Posted 1/14/2017 5:18 PM (GMT 0)
Hi, Mr. Wolf. Glad to meet you, but sorry for the circumstances. I didn't have surgery for my PCa, but I've had other, even bigger surgery. It is no picnic, but you will make it through.

It stinks that you got "the call" at a young age, but as Bobby_Mac said, with your low Gleason score and small involvement, things point to a good outcome.

So, walk, rest, rinse and repeat. It will come together soon, and you will have your life back. Those kids will have to let dad heal for a bit, but then dad will be back at it with them, I'm sure.
Posted 1/14/2017 5:46 PM (GMT 0)
Thank you everyone for all the well wishes, it really is nice. As of now, pain is very manageable, walking the 2 or 3 miles a day really would not be an issue other then that stinking catheter. Ugh, so darn uncomfortable whenever I move around. I think it's partially psychological as the very idea of a catheter has always kind of turned my stomach.

The thing that I'm afraid of right now, when one of the Dr's assistants came in to talk with me the following morning he mentioned something about having to shave more tissue then they expected. Now I'm my worrying mind that means, it extended past the prostate, they couldn't spare the nerves, etc. As you see I'm a bit of a glass half empty guy, and very much a worrier. I was just so stinking tired and uncomfortable in the hospital that I didn't press for what he meant, I really couldn't afford any bad news feeling as bad as I did.

Well I'll know soon, pretty sure they will have the path reports on the 18th when I return. Be well everyone, and send positive thoughts. smile
Posted 1/14/2017 6:14 PM (GMT 0)
I don't know if anyone warned you about this yet...but have your wife go into the drug store and buy you a package of depends to take to the appt when they pull the catheter. You might not leak much or you might have a total flood. Be prepared. Let's hope you have a cute little female nurse. I had a middle-aged guy with a beard pull mine. The attractive female nurses make for better stories.
Posted 1/14/2017 6:31 PM (GMT 0)

Jumpy_Wolf said...
Thank you everyone for all the well wishes, it really is nice. As of now, pain is very manageable, walking the 2 or 3 miles a day really would not be an issue other then that stinking catheter. Ugh, so darn uncomfortable whenever I move around. I think it's partially psychological as the very idea of a catheter has always kind of turned my stomach.

The thing that I'm afraid of right now, when one of the Dr's assistants came in to talk with me the following morning he mentioned something about having to shave more tissue then they expected. Now I'm my worrying mind that means, it extended past the prostate, they couldn't spare the nerves, etc. As you see I'm a bit of a glass half empty guy, and very much a worrier. I was just so stinking tired and uncomfortable in the hospital that I didn't press for what he meant, I really couldn't afford any bad news feeling as bad as I did.

Well I'll know soon, pretty sure they will have the path reports on the 18th when I return. Be well everyone, and send positive thoughts. smile

Wolf, one of the things that Tewari does, that some other surgeons, but not all, do , is before they finish the surgery they send the margins to be looked at under a microscope. If the pathologist comes back and tells Tewari the margins were positive for microscopic cancer cells, he will cut a bit wider. Until he gets negative margins. That's a good thing.

This happened to me, he told me wife this. I had nothing that escaped the prostate.
It's nerve wracking waiting for the final pathology report which you'll get this week. But try to relax, cutting more doesn't mean an escape from the capsule
Posted 1/14/2017 7:55 PM (GMT 0)
Pratoman, thank you so much for that info. It has really put my mind at ease. I wasn't aware that he did this.

Halbert, yes I'm pretty aware of the leaking/possible flood after removal. I think I'll opt for the middle aged guy with a beard, can't be 100% sure, but it really looks to me like things might have gotten smaller down there. Either that or my mind really is playing tricks on me. shakehead
Posted 1/15/2017 1:09 AM (GMT 0)

Hello Jumpy Wolf,

Just wanted to extend my support to you, and welcome you to this website, from "one brother to another brother" ...

As in your case, I was in my 40s when I was diagnosed with prostate cancer. I had just attended my 30th high school class reunion ... my health had been perfect my entire life ... I'm a school teacher and a brand new school year had just begun when I was diagnosed ...

Hearing the news of a diagnosis ... it's tough to hear those words ... life-changing ... there are physical side effects to contend with ... and emotions to contend with, as well.

Best advice I have for you? Keep facing forward ... stay positive ... do whatever it takes to keep your "head in the game" ... stay connected to the world around you ...

I can't emphasize enough to "new fellows" here ... stay in close contact with family, friends, and your faith, in whatever form that takes for you, Jumpy Wolf.

I received tremendous encouragement and support from my relatives, my friends, work colleagues, old classmates, old college roommates, community members, and MY SCHOOL STUDENTS.

Throughout my treatments, I've stayed active ... I exercise daily ... I have kept up with my full-time teaching career ... I have stayed active with my hobbies, interests, social events, and volunteer work.

This is part of what I mean by saying, "Do whatever it takes to keep your head in the game." The name of the game is LIFE ... and you are the main quarterback in the game, Jumpy Wolf !

Luckily, your family, friends, neighbors, work colleagues, and community members will ALL show their support and join your TEAM alongside you.

Several of my friends now share in my same diagnosis ... we are all about the same age ... they are friends from every chapter of my life ... hometown friends ... one of my old college roommates ... a church minister friend of mine ... a couple of work colleagues ... and friends from the community. I have a tight bond of friendship and brotherhood with each one of them, and we look after each other as friends and brothers ... now that we share the same diagnosis.

Ironically, my father is also a prostate cancer patient, alongside me ... we share the same doctors ... Dad and I also share our story with other fellows, encouraging them to stay proactive with their health.

We have a saying that I want to share with you ... "Although this health diagnosis is now a CHAPTER in your life's story, don't ever let this health diagnosis become the TITLE of your BOOK OF LIFE."

Words to think about, words to reflect upon, words to live by ... from life lessons I have learned since first being diagnosed. Best life lesson to share with you ? Keep LIVING LIFE to the fullest, each day ...

Some time back, I suddenly realized that I have seen over 1,000 sunrises and 1,000 sunsets since being diagnosed. There have been valleys and peaks along the way ... setbacks and successes ... cloudy days and sunny days ... darkness and dawn ... but I have kept facing forward, the best way I know how ... and each fellow here has found a way to do that.

No matter what, Jumpy Wolf, the brothers here are here to support you, every step of the way ... whether it be when you are down in that battle trench, needing support ... or whether you are climbing to the top of the highest mountain peak ... the brothers are here ... and we're all in this together.

Do a little reading on this website, check in often, and you will see the bonds of friendship and fraternity that unite all of us here ... I see tremendous care and compassion each time I check in ... you'll see it, too ...

In that spirit, I encourage you to read a thread that many of us put together for our friends here who recently became diagnosed. Up in the top right-hand corner of your screen, you will see a search bar ... type in this thread title: LETTERS TO THE NEWLY DIAGNOSED.

When you read that thread, you will find testimonials from many of us here who have a message to share with our brothers who just received a diagnosis of prostate cancer. I think you will find it encouraging, helpful, and inspiring ...

Just wanted to reach out, from across the miles, with a message of encouragement and support, Jumpy Wolf.

Handshake of support,
"Cyclone Team Fan" ~ Iowa State University
Posted 1/15/2017 2:26 AM (GMT 0)
Well, Jumpy, little jumpy is probably making a fine imitation of a turtle pulling back into his shell right now. There is good news: you have a reasonable chance of recovery of that part of your functioning. Tewari is one of the best on that score. Make sure you ask, on catheter pull day, for some trial packs of cialis to take daily. And, with a willing partner, you just might be one of the fortunate ones.
Posted 1/15/2017 2:32 AM (GMT 0)
Hi Jumpy,

I am a Dr. Tewari graduate as well. I was 41 when I had my surgery. 45 is very young for Prostate Cancer. You are very fortunate that your PCP did that PSA test (which goes against current medical protocol, by the way.)

I had great results with Dr. Tewari. You can read more about me and my Tewari experience in the links below, if you are interested.

Try to stay calm. It will take time, but you will get back on track again and never look back.

-Gedman
Posted 1/15/2017 2:51 AM (GMT 0)
ISU-CycloneFan, that was beautiful, your words really touched me. I appreciate it more then you can imagine.

halbert, fortunately I saw a sexual function specialist before my surgery at Dr. Tewari's suggestion. He prescribed Cialis daily use for me. Lucky for me my insurance covered a 6 month supply. yeah

gedman, thanks for the links, I intend to read all of them. Thankfully my PCP does believe in the testing.

Good luck to all of you, you're wonderful people.
Posted 1/27/2017 9:39 PM (GMT 0)
Update with post op pathology.
Ok all here goes I'm now almost 3 weeks post op, and I'm ten days post catheter removal. No continence issues, dry since catheter removal. ED-yes, sadly. Pathology report to follow.

Diagnosis
A. Left Neurovascular Mid to Distal
-Fibrovascular Tissue and peripheral nerve bundles, negative for tumor
B. Prostate and Seminal Vesicles
-Adenocarcinoma of prostate
Gleason Score 3+3=6/10 (Grade 1of5) Confined to prostate but involving left posterior-lateral margin(see parts c and d for final margins)
(See synoptic summary)
C. Left Posterior or Lateral Apex to Mid
-Fibrovascular Tissue, negative for tumor
D. Left posterior or Lateral Base
-Fibrovascular tissue negative for tumor
E. Bilateral Pelvic Lymph Nodes
-Six lymph nodes, negative for tumor (0/6)
Synoptic report Format For Prostate Tumor
Prostate Weight:43g
Histologic Type-Adenocarcinoma (acinar, NOS)
Histologic Grade-3+3=6/10, Grade Group 1 of 5
%of Prostate Involved by Tumor 20%
Extra-prostatic Extension-Not Identified
Seminal Vesicle Invasion-Not Identified
Final Margins- Uninvolved by carcinoma (See parts C & D)
Lympho-vascular Invasion-Not Identified
Perineural Invasion-Present
Treatment Effect on Carcinoma-Not Identified
Pathological Staging-pT2cpN0
Additional Pathological Findings- High Grade prostatic intraepithelial neoplasia

Thoughts on all this? Can't say I'm happy about the positive margins, but of course it could be worse. The final surgical margins being negative is a slight consolation I guess. Now just waiting for the post op PSA, scheduled for 6 weeks post surgery. Fingers crossed.....with this pathology report I imagine this is the proper course (no additional treatment until PSA)? Again, thanks everyone, don't know where I would be without all of you.
Posted 1/27/2017 10:20 PM (GMT 0)
Hi Jumpy,

Here are the high points that I see:

G6, 20% involvement, PNI, lymph nodes are clear, no SVI, margins are clear.


All in all, a good report. There has been a lot of discussion in here about the significance (or not) of PNI, and the jury, I think, is mostly still out. In a couple of months, you'll have a blood draw for PSA, and that will tell the 'rest of the story'.

Keep healing. Junior will wake up someday.
Posted 1/27/2017 10:35 PM (GMT 0)
Jumpy,

A recent surgical patient here. Your pathology looks really good. It confirms a Gleason 6, and that's very positive.

You should be happy. So far, so good! Keep us posted.
Posted 1/27/2017 11:06 PM (GMT 0)
Jumpy - either you are misunderstanding something, or i am misunderstanding something. I really hope its you.

I had a similar report from Mt Sinai Pathology post op. I was upgraded though to 3+4, and i had PNI (not in biopsy, only in surgical pathology), and i was 5% of prostate involved by tumor.

Like you, though, i had a positive margin that was discovered on frozen section, and they cut more to get final margins negative. So i have always assumed that i had negative margins. I am thinking you should too.
At my 6 month follow up, Dr Tewari told me that i had a 5% or less chance of recurrence.

Now, with all that said, my PSA at my 2 year checkup, 3 weeks ago, was detectable at .02, they are still calling it undetectable and i am retesting next week. So maybe you are right, and there is some significance to having frozen section margins positive but then after cutting wider, getting FINAL margins negative.

But i always understood that if FINAL margins are negative, you are negative for margins.
Posted 1/27/2017 11:20 PM (GMT 0)
Pratoman-I was kind of confused myself about the margins and was actually hoping someone would clear it up for me. The way I understand it, mind you I wasn't told this it's just a conclusion I'm drawing, is that the margins of the prostate are positive, but the final surgical margins (the extra tissue they removed) was negative for carcinoma. I really don't know, just my assumption. Keep us posted on your next PSA, I'm praying for you.
Posted 1/27/2017 11:37 PM (GMT 0)
Thanks Jump. You understand it correctly, as i do. The question is, do initial positive margins on frozen section, that are mitigated by cutting more and getting negative FINAL margins, equate to the same risk of recurrence, as negative margins initially with no need to cut more. I always assumed they were the same, based on Tewari telling me that my chance of recurrence was less than 5%.

But now i am wondering. I am seeing him next Friday, and will get my retest results. Assuming i can keep my head on straight, i am going to ask him that key question, and will report back.

If anyone else has any insight on this, i, and I'm sure Jumpy, would be real interested.

Aside from that ONE ISSUE, Jumpy, your path reports looks about as good as it can get. And regarding the PNI, when i got the report, the NP told me that almost everyone has PNI in the surgical pathology, and that its less meaningful than if it is present in the biopsy pathology. That last point thouogh, remains controversial, i believe, to this day.
Posted 1/28/2017 12:32 AM (GMT 0)
Pratoman--I'm VERY interested in what Dr. Tewari has to say about the margins, please do post his answer. I don't see him until mid April, so I'd love to have an answer. On the PNI, the NP told me the exact same thing, that almost everyone who undergoes a RP has PNI evident in their surgical pathology.
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