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Posted 10/11/2013 11:51 AM (GMT 0)
GC thanks for the update. IMHO I think you still need to keep the parking brake on, until after the saturation biopsy. In the meantime be a sponge and soak up all of the information you can on PCa and the various treatment approaches.

IF the biopsy comes out not so good, then you've got lots of approaches to treatment, and again I would encourage you to keep on doing your research. Also for what it's worth I would simply be cautious about comments like "not to consider ratiation because......", not true in today's world. I would also suggest you think about "side effects are what they are, but are only temporary" - in many cases, yes, but not in all. NOT trying to scare you here, just again you're very early on in this whole arena and I believe you really need to research the crap out of all of this before you jump the gun on anything.

Let's start out by hoping the saturation Bx comes back good!
Posted 10/11/2013 11:52 AM (GMT 0)
GC, welcome but sorry you have to be here. Our stories are very similar indeed. I know this is all surreal to you and you want to "fix it", but I would encourage you to take a deep breath, slow down, and educate. Read everything you can about this subject. Whatever grade you have, the stage is still early, you have time to decide. The bx in October seems early to me, you also want time to calculate your psadt. I would encourage you not to make a treatment decision for several more months.

be well...
Posted 10/11/2013 12:43 PM (GMT 0)
GC....what Yooper said.

Jim
Posted 10/11/2013 1:17 PM (GMT 0)

GC Gleason 6 said...
UPDATE--2nd Opinion

Had my second opinion in Boston yesterday. Met with four different doctors (Medical oncologist, radiation oncologist, urologist, and urologic surgeon). Great information from all of them.
I was told not to consider radiation because I am 41 years old and long term effects could be an issue.
They did state active surveillance was an option, however, again because of my age, they feel that I will have to treat this cancer someday (5,10,15 years from now).
I got a strong feeling from all the docs involved that they are leaning toward surgical removal of prostate as my best option. two statements from the doctors stood out to me: 1. My PSA level (4.6) seemed high for the small amount of cancer that was found in the biopsy, possibly indicating that something more is there.
2. Occasionally, an active surveillance patient looks good on paper and all the testing, but then the cancer progresses under their radar, and you left to wonder what if I treated it sooner.

All that said I am now seriously leaning toward removal. Long term results for my age group is good. Side effects are what they are, but are only temporary. Mentally I don't know if I could go on knowing the cancer is there and could some day slip through the cracks and become worse.

I was 40 and the experts I spoke too at the time basically echoed what your experts said. I thought surgery from a very experienced and skilled surgeon was best option for me.

My only comment about AS is that I think that if one is really really diligent about it, something that put me off, then it's slim chances of something going under the radar (although not impossible).

Long story short, I knew i'd need treatment sooner or later and wanted to deal with it head on when i was young and strong and fit as recovery from potential SEs is easier under such conditions. My choice turned out to be the right choice for me.

You have a lot of choices to explore. Look at that as a blessing as you have many options to comfortably beat this. Once you've made your decision, don't look back.
Posted 10/11/2013 5:38 PM (GMT 0)
Hi. This is my first post, as I have not found anyone similar to my story until yours. I do not mean in any way to minimize any of this, but being such similar age to you I feel the need to say there is lots of time.

I would not rush into the decision for surgery. PSA can vary at different times, and is a measure of the free Prostate Specific Antigen in your blood. It gets there thru the prostate because of different things. Maybe you should consider pausing for a few months and having the PSA retested at a later date.

Im 43, diagnosed at 42 cancer in all 12 of my biopsies, PSA 8.6, gleason (3+4) and had no symptoms. I had the Robotic removal and the side effects being "only temporary" is not necessarily true. Looking back, If I could have waited on the surgery I would have. My cancer was very aggressive and had been there a long time. It had grown completely to the skin of the prostate.

My pain was horrible, my recovery was very slow and a year later I have no idea how I am because I lost insurance and am a "pre-existing condition". I had 2 follow ups post surgery with .0 PSAs and am just living on that fact and the hope that it remains at that.

My suggestion will probably differ from most of the men in here, but watch on you tube http://www.youtube.com/watch?v=QOqjt3-3sqA how significant this procedure really is. The bladder is cut off and re-attached, the seminol vesicles are detached. There really is nothing minimal or temporary about this.

Please PAUSE, before you let Surgeons (who ALWAYS lean toward surgery) talk you into a surgery to help them afford their month long European Vacations, to quickly.

1, 2, 5, 10 or 15 years of time before you have the surgery is DEFINITELY WORTH IT.....in my opinion.
Posted 10/14/2013 4:46 PM (GMT 0)
Thanks Davidg...can you share more info with me about your experience. A link to your thread, or right here in mine would be great. How long has it been since your surgery? any long term side effects besides the incontinence and ED?
Posted 10/15/2013 4:04 PM (GMT 0)
Hi GC

I don't have a thread per se.

I was diagnosed 3 years ago this week. Surgery 3 year anniversary in January.

I was never incontinent and had a healthy normal sex life once month out of surgery with pills and 6-8 months out of surgery without. I never kept a diary so I don't remember exact dates.

Biggest adjustment for me was PTSD, mild depression and PSA anxiety.

If you want to have an in depth exchange the mods can give you my email. the one here is an old one that doesn't work.

You'll be fine whatever you do. Just make all your selections wisely.
Posted 10/15/2013 9:52 PM (GMT 0)
GC,
Slow down and enjoy your family! I agree with Casey And others that now you have a "very low risk" and AS is your best bet. It seems that the doctors had the "jury packed". Hope that your next biopsy is great so that you can relax. If the results are not want you want, please seek a 2nd opinion outside of your medical institution. Also, please realize that DavidG had surgery from the best surgeon in the USA and his results were exceptional. The statement that radiation will cause 2nd cancer years down the road is not proven. Yoop, Tud and many others had bracky (seeds) with NO side effects; in fact, these treatments are at least if not more effective than surgery with minimal side effects. I hope that you have great results with your biopsy and no treatment will be necessary..AS sounds great to me..All the best to you!
Bill idea
Posted 10/15/2013 11:35 PM (GMT 0)
GC, sorry to hear that you have been diagnosed with this disease so young like myself. Really is amazing how similar our stories are. I am 39 and was diagnosed back in June with very similar stats. 2 percent of 1 core of 12 with Gleason 6. My cancer was staged as T1a. I talked to several oncologists and urologists and all told me basically what you were told at your second opinion- at our age, surgery is the best if not the only option. We have way too many years ahead of us to play around with this. I have had two psa's 6.7 and 6.5. I really dislike the shot in the dark nature of the biopsies and I fear I have higher grade disease than what was found, primarily due to my psa. I am scheduled for surgery 10/28 and I really can't wait to get this behind me. darn tired of thinking about it. Best of luck to you and feel free to ask me anything.
Posted 10/16/2013 11:20 AM (GMT 0)
Davidg,

Thanks for your info, please pass along your email, I would like to ask more about your case. Where did you have your surgery. My 2nd opinion was with Dr. Dahl out of Mass General in Boston. He would be doing the surgery, if that is the route I choose.
Posted 10/16/2013 11:28 AM (GMT 0)
cdm39,

Sorry to hear about your situation. Did you ever have a second biopsy? My urologist scheduled me for one, but on my second opinion in Boston, I was told to do an MRI first, and then target any suspicious areas with a second biopsy.
I think you are right with your concern about PSA level. The radiation oncologist I met with, stated that there was a disconnect between my PSA level of 4.6 and the small amount of cancer that was found, leading him to think there could be something else there. I have only had one PSA test done, waiting to get a second, but is too short of time period after the biopsy, which was on 8/28. I will qualify my PSA level by stating that I was on Androgel 1.6% at the time of the PSA test. One of Androgel's side effects is increase in PSA.

Are you having robotic surgery? Best of luck to you

Post Edited (GC Gleason 6) : 10/16/2013 5:31:46 AM (GMT-6)

Posted 10/16/2013 11:49 AM (GMT 0)

GC,

There are several common contributors to your mildly elevated PSA. You already mentioned one which is a known contributor. What is your prostate size? Your doctor calculated it during the biopsy, and it would have been included in the report, in cc's. Larger prostates throw off more PSA. Did your doctor test for prostatitis which elevates PSA?

Many rush-to-treatment docs will "choose to overlook" these and keep the patients focused on "the Big-C" rather than the fact that you have the smallest possible diagnosable "prostate cancer," or at least what we call "cancer" today. Did he mention the controversy in the urology community about whether to even call "low-risk PC" by the word "cancer" or change the terminology to something less frightening because too many young guys were regrettably over-reacting out of fear to "the Big-C" word and leaping into irreversible aggressive treatments with onerous side effects which are difficult to face up to? This controversy is the "black eye" of their profession, and a fact that few newbies like you are aware of. Your second, confirmatory biopsy (within 12-18 months) should give you good guidance.

Studies show that about half of re-biopsies for low-risk men result in no change in Gleason score, which will be great confirmation to stay in the monitor-mode.  about a quarter of re-biopsies result come back with a higher Gleason score, which means a deferred treatment may be appropriate.  The last quarter of re-biopsies of low-risk men result in a reduction in Gleason score.  A REDUCTION.  Wouldn't that suck if...

 

Recall this rule-of-thumb:  Prostate cancer, and all medicine, frankly, is all about risk management.  If you are diagnosed with a low-risk case (I previously gave you a link to the NCCN risk categorization info) and went into aggressive treatment based on a single biopsy result, you are at high risk of having been over-treated.



Best wishes...

 

 

 

Post Edited (Casey59) : 10/16/2013 11:23:09 AM (GMT-6)

Posted 10/16/2013 12:38 PM (GMT 0)
GC, IMHO you seem to be locked in on the surgery/get it out syndrome (I hope I'm wrong  wink ). . . .  As you have seen from many here, with your current PCa statistics you honestly, simply don't need to over-react here and make a decision that you can't "re-do."  You have time to focus your energies and worries on understanding and educating yourself to what is going on before making any decision.

Casey mentioned a number of issues that should be checked/verified, particularly with what you've told us.  Again, none of us are medical professionals here, but on the other hand there is an absolute plethora of experience and knowledge that we are trying to share with you.

I sincerely hope I am not coming across as being "pushy" as all of this is far too personal for each of us, but I've seen far too many men be aggressively treated and suffer SE's unnecessarily. . . .

My best to you.

Posted 10/16/2013 7:17 PM (GMT 0)
GC

 No, I did not have a second biopsy. We did discuss a saturation biobsy and I really struggled with going down the active surveillance path vice surgery. I figured the second biopsy was only going to either (A), tell me what I already knew or (B) tell me my condition was worse. So in the end I made my decision based on the best case stats possible(2% 1 core Gleason 6). I am a worry wart so I knew that this disease no matter how small, would be on my mind constantly during active surveillance, as it has been since my diagnosis. Like many on here have said, there is a chance this disease may not effect me for 5, 10, 15 years down the road and possibly not ever. After talking to doctors/oncologists, they have told me that if the cancer is there and goes untreated, there is a chance of it spreading although that risk is very very small if you are in a good active surveillance plan. I just feel that I am better equipped to deal with side effects now than I may be in the future. So for me, I chose what would give me the most peace of mind and give me the best chance of cure now instead of later. I am taking it one step at a time. Treat this disease first then work on the side effects as they come because I know ED and incontinence can't take me away from here. Like I said, I have been accused of worrying too much but if this is not a problem for you then maybe active surveillance (for now) might be a better option for you. The time from diagnosis to decision really sucks. Hang in there and make that decision based on what's best for you and not anyone else. And don't second guess it once you have made it.

Posted 10/16/2013 7:29 PM (GMT 0)
Cdm, I'm glad you are at peace with your decision. I can't say for sure what I would have done at your young age. I understand you not wanting to have another biopsy but I hope you at least took the time to have your slides read by an expert prostate cancer pathologist, e.g. Bostwick or Epstein. With your small diagnosed amount of cancer, I would recommend you get that verified before someone starts cutting.

Naturally it's your life so please don't think I am second guessing your decision because I am not.

However, the only thing that I might argue about in your post is the comment, "Treat this disease first then work on the side effects as they come because I know ED and incontinence can't take me away from here". My mindset was and is to look at the disease holistically with an understanding of the trade-offs. Each man needs to look inside himself and evaluate the importance of the QOL factors. I understand that you have and I hope others do as well.

Jim
Posted 10/17/2013 12:15 AM (GMT 0)
Tudpock 18,
Yes the biopsy is something I am glad I will never have to do again. My slides were reviewed by a second pathologist that gave the same report. I will be shocked if my post op pathology is not higher than biopsy. Psa at 6.5 and 6.7 along with small amount of cancer found by lucky shot in the dark biopsy had me too concerned a worse condition exists. IMO Advancements are really needed in prostate biopsies that all are able to benefit from. I took a walnut and put 12 dots on it. There is a whole lot of area those needles are not hitting.
Posted 10/17/2013 2:55 AM (GMT 0)
Casey

The size of my prostate was not on the pathology report. So i dont know what it is. However after three dre's by three different docs in two states, they all said it feels good/ normal
Have you heard of dr. Douglas Dahl in boston
Posted 10/17/2013 10:47 AM (GMT 0)

GC Gleason 6 said...
Davidg,

Thanks for your info, please pass along your email, I would like to ask more about your case. Where did you have your surgery. My 2nd opinion was with Dr. Dahl out of Mass General in Boston. He would be doing the surgery, if that is the route I choose.

If you email the mods they can give you my current email. Yours isn't listed in your profile.
Posted 10/17/2013 11:05 AM (GMT 0)
Sorry, didn't mean to imply prostate size would be in the pathologist's report...they just receive samples and analyze them. However, the urologist who administered the biopsy used the ultrasound equipment to take dimensions of your prostate prior to taking samples, and plugged the dims into a volume formula to calculate size. It is certainly recorded in his (the urologist's) file.

No, I am unfamiliar with Dr Dahl, but his credentials at MassGen/Harvard look legit. You should tell him you have concerns about your years of Quality of Life. Ask him about Dr Ian Thompson's comment (he will certainly know Thompson) regarding men (like you) with low-risk PC, “The point is, if you have a choice of a dollar today or a dollar 10 years from now, take the dollar today. But if you have a choice of a curative treatment for prostate cancer today or a curative treatment for prostate cancer 10 years from now, choose it 10 years from now.”

See this link (copy/paste into browser): https://www.healingwell.com/community/default.aspx?f=35&m=2788866

Best wishes...
Posted 10/17/2013 11:09 AM (GMT 0)
Casey, young men like us respond better vis-a-vis potential side effects the younger and fitter we are. If GC looks at the statistics top surgeons have with regards to potential side effects he will see that the chances of a young fit man of overcoming these relatively quickly (immediately in our cases) are really good.
Posted 10/17/2013 11:15 AM (GMT 0)
I sincerely hope I am not coming across as being "pushy" as all of this is far too personal for each of us, but I've seen far too many men be aggressively treated and suffer SE's unnecessarily. . . .

I would strongly reiterate Mr. Yooper's comment!
Posted 10/17/2013 11:17 AM (GMT 0)
GC -

This is a good friend of the family up by you. He's a very respected oncologist/radiologist up by you. Given my age and my preferences he advised surgery for me. He is not a surgeon and won't be giving you uneducated and biased counsel.

If you want, I can try to arrange a meeting with him for you.

www.massgeneral.org/radiationoncology/doctors/doctor.aspx?id=16736

Always good to talk to an oncologist when coming up with a plan. Also good to talk to someone who focuses on other disciplines so that you can really balance things out and make as focused a decision as possible.
Posted 10/17/2013 11:20 AM (GMT 0)
actually GOP, I think this thread has become borderline recruitment and planting seeds of doubt. Not what I thought this forum should be about. There is a fine line between being supportive and outlining the multitude of options many of us are lucky enough to be afforded and trying to scare the crap out of someone with half truths presented in a manipulative way. Shame.
Posted 10/17/2013 11:24 AM (GMT 0)
GC - The one undeniable truth is that there is no reason to think you won't do extremely well with either a proper AS program, BT, Radiation, or Surgery. Pros and cons to all them, but the fact is that you will do well once you make your choices wisely and select your practitioner wisely.
Posted 10/17/2013 12:33 PM (GMT 0)

davidg said...
actually GOP, I think this thread has become borderline recruitment and planting seeds of doubt. Not what I thought this forum should be about. There is a fine line between being supportive and outlining the multitude of options many of us are lucky enough to be afforded and trying to scare the crap out of someone with half truths presented in a manipulative way. Shame.

 

David my brother since you responded to GOP's post where all he did was quote something I wrote - I absolutely don't appreciate the insinuation that I was "trying to scare the crap out of someone with half truths presented in a manipulative way."  That is absolutely not the case nor what I am about or what I contribute here. . . . .

GC please accept my apologies if you feel that is the way I came across, as well as for some of the "arguments" you will see out here from time to time.  At the end of the day there is no doubt in my mind that each of us here have your best interests in our inputs. . . . .

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