Health Scare Starting Right After Retirement

[bmcgonig]

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Originally Posted by watchman3135 I was thinking of going with Dr. David B. Samadi as he is well known in Robotic Prostatectomy's but being in Illinois that would involve travel with the dogs and finding a hotel that would allow them. I sometimes forget Chicago also has top notch surgeons so thanks for mentioning that. I also just realized Dr. Schaeffer was the one who treated Ben Stiller. https://www.youtube.com/watch?v=CPH8JuGu8cc&t=27s

Good luck with it. Talking to both of those would probably be very educational at least.

Please keep us up to date.

[jabbahop]

I am in year 4 of watchful waiting. The biopsy’s suck but better than surgery if it can be avoided. Had somewhat elevated PSA readings and BPH for 15 or 20 years before the positive biopsy. It was the low score in one core. The last one they couldn’t find any in any of the cores - not “cured” just luck of the draw when poking holes in my prostate. I am lucky that my variety is not an aggressive version.

I’ve had melanoma and hodgkins lymphoma in my 50’s and survived both. I am not ignoring it and hoping it goes away but as one poster said, most of us males will die WITH prostate cancer not FROM prostate cancer.

[watchman3135]

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Originally Posted by jabbahop I am in year 4 of watchful waiting. The biopsy’s suck but better than surgery if it can be avoided. Had somewhat elevated PSA readings and BPH for 15 or 20 years before the positive biopsy. It was the low score in one core. The last one they couldn’t find any in any of the cores - not “cured” just luck of the draw when poking holes in my prostate. I am lucky that my variety is not an aggressive version. I’ve had melanoma and hodgkins lymphoma in my 50’s and survived both. I am not ignoring it and hoping it goes away but as one poster said, most of us males will die WITH prostate cancer not FROM prostate cancer.

Thanks for sharing your story. Yes this is one of the hardest decisions to make and my fear is getting the best of me and I know it. I have had that typical felling of it the "C" word and just cut it out and I will live with the side effects of surgery. I think the one poster sent me over the edge with his story that like mine, a MRI didn't show anything yet upon removal, the tumor was on the outer wall nearly breaking the encapsulation. I know everyone's story will be different and shouldn't compare.

This is week two post diagnosis and I think today was the first that I finally got at least 6.5 hours of sleep and my mood was a bit more up beat. I never took any mind alter drugs ever but I almost think I would need to be on anxiety drugs just to get through active surveillance. The huge fear is missing the opportunity for treatment and any back pain, leg pain I get is going to make me think the you know what. I then watched this video about Predator actor Bill Duke and Dr. Mark Scholz who has been on AS for over 20 years and he discussed the role that fear plays with the diagnoses and AS and it made me fell a little better.

https://www.youtube.com/watch?v=zft_Z5EBnCI

Maybe for guys like me it gets easier with time but I am defiantly a "what if" worrier and that will never change. It was the similar to planning ER but this puts things in another perspective.

[jabbahop]

You are right to not to under estimate the mental aspect and even more important the impact on family. I think my lympoma experience sucked (chemo for 6 months) but it was much harder on my family watching and worrying. For me I just had to put my head down and get through the treatment.

The worry is real and I believe attitude can play a part in recovery. I am probably a bit too cavelier about it. I would listen to your doctors (mine were pretty confident that monitoring with biopsys would be ok), your family and yourself and do what feels most comforting. My father, brother in law, and two good friends all had prostate surgery and all became cancer free and recovered well after a year. I am sending my best wishes on your decision and with you kicking cancer’s ASS. michael

[watchman3135]

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Originally Posted by jabbahop You are right to not to under estimate the mental aspect and even more important the impact on family. I think my lympoma experience sucked (chemo for 6 months) but it was much harder on my family watching and worrying. For me I just had to put my head down and get through the treatment. The worry is real and I believe attitude can play a part in recovery. I am probably a bit too cavelier about it. I would listen to your doctors (mine were pretty confident that monitoring with biopsys would be ok), your family and yourself and do what feels most comforting. My father, brother in law, and two good friends all had prostate surgery and all became cancer free and recovered well after a year. I am sending my best wishes on your decision and with you kicking cancer’s ASS. michael

Thanks Michael for your kind words. I am glad to hear you are doing better.

[watchman3135]

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Originally Posted by NewEnglander Sorry for your diagnosis Watchman3135, my case is very similar to yours, I was 55 years old at my cancer diagnosis with similar numbers to you. My father and two uncles passed away from Prostate cancer so I started watching my PSA many years ago. Each year as part of my annual physical I’d have the digital exam as well as a PSA test. For years it was in the 1.6-2.0 range then in 2017 when it increased to 3.0. Three months later it was 3.4 so we decided upon a biopsy. I tried to get an MRI and/or MRI guided Biopsy but my insurance would not cover it. I did the normal Biopsy which came back 2 of 12 cores positive 3+3= Gleason 6. After positive cancer diagnosis the insurance then approved an MRI. The MRI was done on the newest technology MRI machine which was installed just months before my appointment. The MRI saw nothing, PIRADS 1. I spoke to multiple Urologists and Radiation oncologists from Yale and Sloan Kettering in NY. I looked into all of the options but decided on Robotic Prostatectomy with a doctor who had done over 3500 robotic prostatectomies using the DaVinci machine. This decision is not to be taken lightly as the odds for permanent side effects are more common that not. Erectile deficiency and incontinence issues in many if not most cases. I didn’t like Active Surveillance. The two friends of mine who were on Active Surveillance both had to eventually get treatment so what was gained by waiting, at least in their cases? During/after my surgery it was found that the cancer tumor was about 8-9mm and it was already outside the prostate wall. But luckily there were “no margins” in my case as the doctor cuts outside the prostate wall and everything was contained within the area he cut out. I was surprised at the finding; how could the MRI completely miss the tumor? but it did in my case. I followed all the post op suggested recovery walking a minimum of 5 miles per day starting less than a week after surgery, doing kegel exercises daily. I took a medical leave from work for 12 weeks. I’m happy with how things turned out for me. I’ve got no side effects at all and my PSA numbers remain at zero. During the healing process I did have some minor urinary leakage, what they call stress incontinence, but this went away after a couple of months. I swear that I’m without the common side effects because of the skill of my surgeon but he says it’s because I’m in relatively good shape and followed all his instructions. Who knows maybe I was just lucky, at least so far. My brother had not been checking his PSA numbers so at my urging and his girlfriends too he finally got his checked. Unfortunately, he found cancer too. He selected Proton Radiation therapy and so far, he’s had no side effects and no further PSA increases. I’d suggest that you get 2nd, 3rd and maybe even 4th opinions with Drs from differing treatment options, read as much as you can then decide for yourself. I wish you well with whatever option you chose. Although I was already planning on retiring my cancer diagnosis definitely helped push me to retire on 12/31/20. And my DW joined me retiring the same week! We are very happily retired and loving life.

Just wanted to give a quick update. While I was trying to wrestle with the idea of having cancer in my body and active surveillance, your comment had the greatest impact. My decision was to move forward with surgery. I ended up having surgery at the end of October and I am now 11 weeks post op and have 95% continence. My surgeon called me on a Friday three weeks after surgery with the final pathology and the news was good. He said it was very low and contained and is "confident of full recovery".

I had my first PSA five and a half weeks post op and it came back "undetectable" so I hope it stays that way. I read the pathology report further wondering if mine was going to be similar to moving to the outer wall but it read "low" with 1% contained G6 Adenocarcinoma.

Your comment aside, I knew no matter what I was never going to get comfortable with any amount of wait and see no mater how AS proved to avoid or delay treatment for me so in the end the decision was mine.

Am I missing my prostate? Yes. And with 1% G6 do I at times wonder if I jumped the gun? Sometimes but in the end being free of the disease before it advanced was the goal and in the end I feel I made the right choice. Thanks.

[NewEnglander]

I'm glad everything worked out well for you. This is a very difficult personal decision, I think everyone second guesses our selection no mater what option is selected and what outcome you get. Keep doing your kegel exercises that will help considerably with incontinence issues. If you have any questions or want my opinion on anything related please don't hesitate to private message me.
I'm now 4 years out from my surgery, just had my annual ultra sensitive PSA test and all is well.

[bmcgonig]

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Originally Posted by watchman3135 Just wanted to give a quick update. While I was trying to wrestle with the idea of having cancer in my body and active surveillance, your comment had the greatest impact. My decision was to move forward with surgery. I ended up having surgery at the end of October and I am now 11 weeks post op and have 95% continence. My surgeon called me on a Friday three weeks after surgery with the final pathology and the news was good. He said it was very low and contained and is "confident of full recovery". I had my first PSA five and a half weeks post op and it came back "undetectable" so I hope it stays that way. I read the pathology report further wondering if mine was going to be similar to moving to the outer wall but it read "low" with 1% contained G6 Adenocarcinoma. Your comment aside, I knew no matter what I was never going to get comfortable with any amount of wait and see no mater how AS proved to avoid or delay treatment for me so in the end the decision was mine. Am I missing my prostate? Yes. And with 1% G6 do I at times wonder if I jumped the gun? Sometimes but in the end being free of the disease before it advanced was the goal and in the end I feel I made the right choice. Thanks.

Great news. Who did the surgery?

[pacergal]

Good news, watchman3135

[watchman3135]

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Originally Posted by bmcgonig Great news. Who did the surgery?

Shilajit D. Kundu, MD at Northwestern. Not sure it matters but he works with Dr. Edward M. Schaeffer who performed the surgery on Ben Stiller. I had a good experience. Full nerve sparing and all went well.

He was my second opinion and after meeting with him he said I had done my research on my options and possible outcomes well and never tried to sway my decision on surgery vs active surveillance which I appreciated though at the the end he did say given my younger age of 55, he felt I made the right decision.

https://www.youtube.com/watch?v=DLMT5XFXqMI

[watchman3135]

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Originally Posted by pacergal Good news, watchman3135

Thanks.

[Tetto]

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Originally Posted by watchman3135 Shilajit D. Kundu, MD at Northwestern. Not sure it matters but he works with Dr. Edward M. Schaeffer who performed the surgery on Ben Stiller. I had a good experience. Full nerve sparing and all went well. He was my second opinion and after meeting with him he said I had done my research on my options and possible outcomes well and never tried to sway my decision on surgery vs active surveillance which I appreciated though at the the end he did say given my younger age of 55, he felt I made the right decision. https://www.youtube.com/watch?v=DLMT5XFXqMI

Was it performed robotically? I’m glad everything turned out well for you!

[watchman3135]

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Originally Posted by Tetto Was it performed robotically? I’m glad everything turned out well for you!

Yes, robotic. Being my first surgery and with general anesthesia I was freaking out knowing I would be under for about 3 hours and at times with the table tilted with the robot on top of me. Lots of anxiety buildup. They could see me starting to get nervous so my wife said they first gave me a relaxer which I actually appreciated. All my worries were unnecessary because as others coached me who already went through it, they were right in that the last thing you remember is them asking you to count and then you wake up in recovery. It felt that quick. It really made me appreciate how amazing the staff and doctors were.

[Koolau]

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Originally Posted by watchman3135 Yes, robotic. Being my first surgery and with general anesthesia I was freaking out knowing I would be under for about 3 hours and at times with the table tilted with the robot on top of me. Lots of anxiety buildup. They could see me starting to get nervous so my wife said they first gave me a relaxer which I actually appreciated. All my worries were unnecessary because as others coached me who already went through it, they were right in that the last thing you remember is them asking you to count and then you wake up in recovery. It felt that quick. It really made me appreciate how amazing the staff and doctors were.

Thanks so much for the detailed update. I'm sure many of us are concerned about this issue for ourselves. Success stories are very much appreciated. Aloha

[Tetto]

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Originally Posted by watchman3135 Yes, robotic. Being my first surgery and with general anesthesia I was freaking out knowing I would be under for about 3 hours and at times with the table tilted with the robot on top of me. Lots of anxiety buildup. They could see me starting to get nervous so my wife said they first gave me a relaxer which I actually appreciated. All my worries were unnecessary because as others coached me who already went through it, they were right in that the last thing you remember is them asking you to count and then you wake up in recovery. It felt that quick. It really made me appreciate how amazing the staff and doctors were.

You had a great doctor and that makes a huge difference. I work in the surgical robotic space from a engineering standpoint and it’s very heartening to hear stories like yours. There will be much more robotic surgery in the future and along with analytics and AI, there will be a robot for every disease state. Exciting stuff!

[Koolau]

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Originally Posted by Tetto You had a great doctor and that makes a huge difference. I work in the surgical robotic space from a engineering standpoint and it’s very heartening to hear stories like yours. There will be much more robotic surgery in the future and along with analytics and AI, there will be a robot for every disease state. Exciting stuff!

Here is hoping that by the time I need (whatever) surgery, the robotic procedure will be available, tested and proven successful. What a time to be alive. YMMV

[watchman3135]

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Originally Posted by Koolau Thanks so much for the detailed update. I'm sure many of us are concerned about this issue for ourselves. Success stories are very much appreciated. Aloha

Thanks. I hope it helps anyone else out if ever having to face it.

Statistically It is the most common cancer us men get and age corelates to the probability of having some form in other words a 66 year old man has about a 66% chance of have some form of cancer in their prostate though not all need treatment.

In my research there were a long autopsy studies performed on men's prostates that died form other causes and this is were the data comes from. The issue then becomes not all men need to be treated due to the ones that are slow growing hence the recent active surveillance option if you are found to have a low volume low grade G6 and some 3 + 4 G7. I say recent because AS became a treatment option about 20 years ago.

My doctor told me that prior to active surveillance becoming a option for low grade low volume disease regardless of Gleason score, almost all were in surgery within weeks.

It is important for those offered AS to understand it does not mean doing nothing. On average there are repeat 3 - 6 monthly biopsy follow ups, PSA testing and\or MRI imaging for a closer initial period of time and then if no or low progression criteria is met, the repeat testing intervals tend to spread out a little longer in between though it is never completely eliminated until a certain senior age is reached.

The purpose of AS is to allow the patient to postpone or even avoid surgery altogether if no or low progression though understandably some just cannot get comfortable with it and may decide to address it now regardless of possible side effects.

As always it's best to work with your Doctor on a game plan.

[REWahoo]

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Originally Posted by Tetto There will be much more robotic surgery in the future and along with analytics and AI, there will be a robot for every disease state. Exciting stuff!

Yes, indeed! To think it wasn't that long ago that only in the world of sci-fi horror could we envision a future where machines cut people open to remove stuff!

[Bamaman]

I'm sorry that so many of you have had prostate issues. It's another of those "when rather than if" situations if you live to be old enough.

I've been fortunate in that department. But I had a small spot on the side of my nose 18 months ago, and it ended up being the first stage of melanoma. I couldn't believe it took such a long incision to get out.

I recently had a dark spot on a forearm that the dermatologist suspected was another melanoma. He took a plug and sent it to pathology. It too was the start of a melanoma, and the 3 inch incision looks like I was in a knife fight.

Skin issues are another area that everyone needs to watch closely--especially for those that have spent a lot of time outdoors. If a melanoma grows deep, it gets into your bloodstream and can quickly kill.

[watchman3135]

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Originally Posted by Bamaman I'm sorry that so many of you have had prostate issues. It's another of those "when rather than if" situations if you live to be old enough. I've been fortunate in that department. But I had a small spot on the side of my nose 18 months ago, and it ended up being the first stage of melanoma. I couldn't believe it took such a long incision to get out. I recently had a dark spot on a forearm that the dermatologist suspected was another melanoma. He took a plug and sent it to pathology. It too was the start of a melanoma, and the 3 inch incision looks like I was in a knife fight. Skin issues are another area that everyone needs to watch closely--especially for those that have spent a lot of time outdoors. If a melanoma grows deep, it gets into your bloodstream and can quickly kill.

Glad to hear it was caught and treated early. With melanoma, they have to go beyond the area to ensure they got everything. As with all cancers it's about being aware and treating it early.