Hello just diagnosed and very frightened
Comments
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HmmmRobLee said:The flip side of the coin
FWIW my urosurgeon discovered that my prostate cancer was a bit worse than expected and I had to have radiation within the first year following surgery. During the course of radiation I developed severe digestive problems. After the radiation (39 Tx IMRT) I had to wait six months before I could get a colonoscopy... which I just had day before yesterday. The outcome is that I am now diagnosed with acute radiation colitis or pelvic radiation disease (PRD).
It figures with my luck that after surgery left me with urinary incontinence that the follow up radiation would leave with a bowel disorder. I'm still in the process of digesting (pardon the pun) the implication of this condition. But I just thought I would once again point out that all treatments have side effects. It's not just surgery. Hormone therapy has them also. And of course, so does radiation. There is very little information about it to be found online, and it isn't spoken of often, espcially by men. It is embarassing and unmanly. But it does happen.
Of course, we have all been confronted by people who tell you "my so and so had prostate cancer and he's doing fine". That's a topic for another discussion.
there are over 170 thousand men a year diagnosed with PC..there are 100s of thousands out there that had surgury..how many people are on this form a few thousand ...I am sure that there are 100s of thousands of men out there that are just fine after surgury...If the only thing I lose is a hard on the i dont care ...sex isn’t a big deal to me anymore ...
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RobLee,
I am sorry for the side effects that you are experiencing from more than one type of active treatment..........too bad that the side effects from more than one active treatments can be cummulative. As VG says, "things must be done coordinatiely"...lto include lots of research before selection of treatment.
Steve...my hat is off to you....you have done lots of research at first class institutions about treating this beast......good luck with your decision based on research...of course we are here for you
you.
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Still need help please
starting to get ugly in my household ...wife is getting upset with me ...this last dr Peter Carroll supposedly the best at UCSF gave me the least amount of time of them all 20 minutes only ..my wife is convinced we should listen to him...well not so fast ..I am confused more than ever ,...UCSF looked at my slides as well as Stanford they both agree with the original report ...2 cores 6 ml and 8 ml with not more than 10% gleason 4 .....okayyyy to me that’s not bad ...now this dicifer genomic report gives me a score of .82 high risk ..first of all it showing my latest PSA 8.1 which it’s nit dropped to 7.6 ...and it’s sayIng that after surgery I hsve a 31% chance of spreading after 5 years and 18 % after 10 ...WTF ..30 % chance I wonder if that’s even with a clean pathology report ... this dr caroll also didn’t like how the Gleason 4 was fused and cribifirm type ....I mean why hsve surgury if u r going to hsve to radition ad well ....I emailed both brachytherapy dr st stantord snd UCSF and ssked then to review the decifer findings and as well as what UCSF pathology found and I am waitingto hear what they have to say about the genomictest resilts ...I have to admit I am nit tooo thrilled about having surgury
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RobLee; Be the Force with you
Rob,
I am sorry for knowing about the RT side effects. As you comment in the post, six months is a short period to heal. I believe it can still improve naturally.
Look for diets that easily digest and allow fast healing of the colon. Can you describe the location of the colitis and other contents of the report?
Your comments have been helping many people in the forum. I hope you continue to tel us your story.
This is a difficult moment in your treatment. Just hung in there positively.
Best,
VG
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Wow new finding
so I was going over the UCSF pathology report and now it seems like there is pereniel invasion I the number 8 core where as the original report there was not. Wow the dr at UCSF didn’t mention this . This makes everything way more serious now much greater risk with radiat ion and surgery but what gets me is that the dr didn’t mention this all he talked about was tge high risk because of the genomic report . This gives me a40 % chance if reoccurrence after surgery hell the things I’m reading is saying I should consider no nerve sparing I think I need some answers fromthis dr. Any suggestions
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Perineural Invasion(PNI)
Hi Steve,
This is an excerpt from the American Cancer Society webpage" When this is found(PNI) on a biopsy, it means that there is a higher chance that the cancer has spread outside the prostate. Still, perineural invasion doesn’t mean that the cancer has spread, and other factors, such as the Gleason score and amount of cancer in the cores, are more important. In some cases, finding perineural invasion may affect treatment, so if your report mentions perineural invasion, you should discuss it with your doctor." so check with your urologist & radiologist and see what they have to say about your course of action. Just make sure you get the best doctors working on your case, second opinions even with a second hospital/doctors does not hurt. Perineural Invasion is not a death sentence but a call for more study and consultation with your doctors.
The info I quoted above comes from this article. https://www.cancer.org/ Do a search on the ACS website by clicking the magnifying glass at the top of the page and typing Understanding Your Pathology Report: Prostate Cancer.
Dave 3+4
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Hmmm
surgeon doesnt seem too concerned the the invasion findings...I am getting a copy of Stanford’s to see if they agree with the core 6 invasion ..UCSF dr says it correlates with gleason 4 and if it’s on the bottom near any nerve bundles it’s seem like an invasion is UCSF dr is more concerned that it is high risk and of cribiform...problem is I have to email questions now because getting a damn app with dr takes weeks ..UCSF surgeon says that with a high risk cancer he prefers to act fast take it out and hope fully go fir the cure ..he also suggested radiation bit both internal and external..he is also sayin* that 8 to 10 years out that either way the outcome of no reoccurance would be the same ...hmmmm..so many questions UCSF dr said he is treating 2 men with reoccurance 10-13 years out ..and its back in the prostrate both 3-3 and they are just watching ..so what if the cancer comes back after 7 years and u have no prostarte then What does it end up in your lymph nodes that can’t be good I’d rather have it back in the prostrate any thoughts
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Anyway
thanks too all for your input but it’s time to, decided...it’s been almost 5 months since dianosed ...I have seen them all ..supposedly the best of the best ...there was a reason I waited for this last dr...I could have said screw it and gone with one of the others bit I didn’t ..thank god because I was leaning brachytherapy and in the long run I would have been screwed. and probably had reoccurance because of the high risk cancer....probably why a lot people have reoccurance because they don’t know the extent of the cancer just going by PSA and Gleason which you can’t ....3 months ago it was no problem .I was ok I was going to be fine no hurry no problems And this dr at UCSF wanted genomic decifer testing and for a good reason and then bammmmm...at this point right now there is a 46% the cancer is worse ...could be 4-3 or 4-4 5 year mastasis if not treated 38 % and 10 mortality 17%. Dors not seem high but it is.. ALL DRs should have this done alllllll.if this was done months ago my decision and treatment would have been done...so what do I do internal and external radiation ....or yank it ...we will listen to the 4 drs consultations again because I recorded them ..will add input from my friends here and from my studying and we will make a logical family decison and we won’t look back ...will keep u all informed ..I believe the lord made me wait for a reason and I believe the lord will take care of me as well..
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DecisionSteve1961 said:Anyway
thanks too all for your input but it’s time to, decided...it’s been almost 5 months since dianosed ...I have seen them all ..supposedly the best of the best ...there was a reason I waited for this last dr...I could have said screw it and gone with one of the others bit I didn’t ..thank god because I was leaning brachytherapy and in the long run I would have been screwed. and probably had reoccurance because of the high risk cancer....probably why a lot people have reoccurance because they don’t know the extent of the cancer just going by PSA and Gleason which you can’t ....3 months ago it was no problem .I was ok I was going to be fine no hurry no problems And this dr at UCSF wanted genomic decifer testing and for a good reason and then bammmmm...at this point right now there is a 46% the cancer is worse ...could be 4-3 or 4-4 5 year mastasis if not treated 38 % and 10 mortality 17%. Dors not seem high but it is.. ALL DRs should have this done alllllll.if this was done months ago my decision and treatment would have been done...so what do I do internal and external radiation ....or yank it ...we will listen to the 4 drs consultations again because I recorded them ..will add input from my friends here and from my studying and we will make a logical family decison and we won’t look back ...will keep u all informed ..I believe the lord made me wait for a reason and I believe the lord will take care of me as well..
Steve, I ,like you, took about 6 months to make a decision. My Gleason was a 4+3=7. I am 67. In my opinion, no two of these cancers are alike. Tomorrow will be my 5th week post op. I go to see my doctor for my first follow-up. My prostate was removed; bladder neck reconstruction; 8 pelvic lymph nodes removed. Sometimes no decision, when it comes to cancer, is a decision in itself. If you opt for the surgery, it was not a cake walk, but in my case neither were the other options. I posted the entire procedure and post op pathology on this site. I wish you and your family well in this journey.
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Steve, in my case...
Steve, I can't tell you what to do or even advise you. You've had the luxury of time to make this decision. In my case I had to get things going quickly. We were selling our house and moving to Florida, a thousand miles away. Contracts had been signed and winter was coming. I knew nothing about prostate cancer and didn't have much time to do research. Starting with my biopsy in early July and through our final move in late October, a thousand little things had to be dealt with. I even drove a U-haul 15ft truck to Florida and flew back home just days before the surgery. The RP itself was the easiest part of the whole process. Everything went as planned, except that there was more cancer in there than the MRI had revealed, and I would still need radiation.
That's when things got a lot more complicated. I'll spare you the details. You've probably seen my sig on a couple other PCa forums; they tell the story briefly. Anyway, you need to be aware that all radiation is administered relying on scans, and scans don't always tell the whole story. Also, going with primary radiation leaves your prostate intact. If you have any existing prostate problems, such as difficulty urinating such as I did, those problems will still be with you. And as I've mentioned elsewhere, I now have radiation colitis or pelvic radiation disease. You don't hear of that very often. I am not trying to sway you one way or the other, but just letting you know that whichever way you go there will be a posibility of side effects.
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Genomic testing
I’m sooo messed up over this now ..the genomic report says my cancer is high risk...it’s saying that right now I have a 45/% chsnce that the cancer is worse than at time of biopsy .my dr doesn’t like how the Gleason 4 is cribform doesn’t like it a bit ..he suggests surgury bit also says I will get same results with Brachytherapy and 25 EBR ..but drs at both Stanford and UCSF radiology don’t recognize the defer genomic testing ..where as my surgeon does and he supposed to be the best..**** even he says that I would do good with radiation but everywhere I read brachytherapy and radiation is for low intermediate risk onlyyyyyy..and they go by Gleason Score only ..I don’t want to make a mistake. ..damn go fir the brachytherapy and hsve it come bpack in 5 years because the cancer actually is high risk ..hsve surgery to find out it leaked and have to have radiating n as well ..****
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Conventional WisdomSteve1961 said:Genomic testing
I’m sooo messed up over this now ..the genomic report says my cancer is high risk...it’s saying that right now I have a 45/% chsnce that the cancer is worse than at time of biopsy .my dr doesn’t like how the Gleason 4 is cribform doesn’t like it a bit ..he suggests surgury bit also says I will get same results with Brachytherapy and 25 EBR ..but drs at both Stanford and UCSF radiology don’t recognize the defer genomic testing ..where as my surgeon does and he supposed to be the best..**** even he says that I would do good with radiation but everywhere I read brachytherapy and radiation is for low intermediate risk onlyyyyyy..and they go by Gleason Score only ..I don’t want to make a mistake. ..damn go fir the brachytherapy and hsve it come bpack in 5 years because the cancer actually is high risk ..hsve surgery to find out it leaked and have to have radiating n as well ..****
Steve, I have not followed your case in detail but will make a general comment regarding your April 26 post.
It is true that brachytherapy is regarded as a tool mostly for low to moderate risk PCas. You do not specify then what you mean by "radiation," but IMRT/IGRT is the usual and probably best choice first-line for more aggressive disease. IMRT or IGRT need not ever necessarily be combined with brach, and usually isn't.
Surgery can be a best choice for PCa that is reasonably believed to be contained within the gland, but it a less ideal choice for disease that has exited the gland. But determing if there is likely escape requires a lot of test data and expertise, since imaging for PCa is not the best, regardless of the technology employed.
max
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More clearlyConventional Wisdom
Steve, I have not followed your case in detail but will make a general comment regarding your April 26 post.
It is true that brachytherapy is regarded as a tool mostly for low to moderate risk PCas. You do not specify then what you mean by "radiation," but IMRT/IGRT is the usual and probably best choice first-line for more aggressive disease. IMRT or IGRT need not ever necessarily be combined with brach, and usually isn't.
Surgery can be a best choice for PCa that is reasonably believed to be contained within the gland, but it a less ideal choice for disease that has exited the gland. But determing if there is likely escape requires a lot of test data and expertise, since imaging for PCa is not the best, regardless of the technology employed.
max
ok everyone does seem to,still think this is still contained ...mri bone scan sonogram PSA still low 8.0 just the decipher report is saying that it is a high risk tumor...at first they wanted to do 2 treatments of hi dose radiation Brachytherapy in one day and that was it ...now finding out that it is of high risk they want to. be more conventional and 25 treatments external combined with 1 hi dose brachytherapy...or surgeon suggests removal get it out and go for a cure ....but surgeon also said I could do the radiation and the long term outcome would be the same .....so what the heck do I do ...confusing ..this is all UCSF by the way ...i can’t just dismiss the decifer results because not everyone recognizes it ...Stanford doesn’t they dint even care about what decifer found ...also UCSF found PNI invasion in core 6 which Stanford and the original didn’t ... so I hope that everyone can see why I confuse as hell now....do I go radiation knowing the cancer is high risk when high risk usually isn’t an option for Brachy or do I take it out and hope there was no pni and it didn’t escape ....let’s not forget it’s been 5 months since biopsy so it could be worse now ..but last PSA was a month ago and it dropped a bit that’s good I guess
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This is dr Pete Carroll response to more questions
The Steven - I tired both numbers, no answer. I will try and address your questions.
1. Perineural invasion correlates with cancer grade and offers very little independent information. However, the "cribiform" histology which we talked about seems to correlate with risk (worse).
2. Although genomics and the histology suggest higher risk cancer, they are not perfect markers. Also your cancer appears confined (good)
3. Radiation is another option and if you feelmore comfortable with that approach and fully understands risks/benefits, I am fine with that decision. Based on the genomics and histology many would treat this with certain types/combinations of radiation. You should discuss this with an experienced radiation oncologist
4. Hopefully with surgery you would not need any additional treatment.
5. We generally do more surgery in younger patients with your type of cancer given some concerns about the long term durability of radiation and late side effects. However, as I mentioned, there is no preferred treatment. You can decide on either one.
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UCSF report resent
core 3 length of tumor 6mm total length 8mm. Invovment 75% % of glesson 4 approx 10% no pni found no extraprostratic tumor found
core 6 length of tumor 8 mm total length 9 mm % of involvement 89% % of gleason 4 approx 10% pni is seen no extra post tumor present
they don’t even mention the third core that has 3-3 I need to find the original report to see what core that was
this was 5 months ago ....hope fully it hasn’t changed much..but the surgeon at UCSF seems to think that it is worse according to decipher now how much who knows .wven thinks after surgury could end up 4-4 ... just want to make the right decision sooooooon .
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Good Advice
Hi Steve,
Good advice from Max and Dr. Carroll. As I have always said both radiation in various forms and surgery all have side effects. You need to study them all before you decide as they might effect you for the rest of your life. I know when I have big decisions to make I sometimes suffer from Paralysis by Analysis, you study and research and still can't make up your mind. So much data and info that it can cloud everything. My general thought process was that if it was contained I would do surgery but if it was not radiation was the alternative. I chose surgery and at my last 6mo. checkup after 3 yrs. my PSA was undetectable. I wanted to do this because if I did radaiton I would alway wonder if the cancer was gone, with surgery I hope it's all gone, only time will tell. But radiation in my mind can cause problems years later that I did not want to take on at this point. If I have to do radiation later I will cross that path, but for now I will never have any side effects from radiation. But I do have a very slight leakage from the surgery, but I am OK with that. So a little insight into how my brain worked when I had to decise on a treament plan. Good experienced doctors and great facilites can make a world of difference on your outcome.
Like Vasco said grab your significant other and take a short weekend away to see if you can come to a decision. From what I have read of your case it sounds like you have both options(radiation or surgery) available. Good luck on your choice.
Dave 3+4
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Thanks
looking at surgury whole family coming over this weekend to decide ..the cribifirm thing that bothers me....I have read about it it’s not good it says any grade 3 that’s cribifirm should be graded as 4 so I am looking st it as 4-4 and 4-4 and hoping I’m wrong and that means to meM that I am not a candidate for brachytherapy even though they say i am ...if it leaks it leaks whether I do rad or surgery.and If I need rad then at least I don’t have all that already in me ...man this is screwed
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Word to the wise
I dint know how relevant the decifer test is ..but we will find out ....I guess my insurance is paying for it since UCSF ordered it ....I wish I would have ordered it myself or demanded it get done ..who knows maybe these last 4 months could have meant the matter of living 5 or 10years more i hope it all turns out good....any new people on the forum should be told about this testing and what is going on with me one can’t just go by Gleason Score anymore it’s just not that accurate ...
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