HealingWell
Search Close Search
☰

More questions

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/21/2016 1:38 PM (GMT 0)
I had an appt last Thurs with my local Uro, who had me in to go over the bone scan (it was clear). He spent another 15-20 mins with me and my wife answering my questions. He was constantly telling me,"that is a good question". I came ready because of the info I gained from this forum! This was my second consult with him, the first being about 30 mins reviewing my positive biopsy result a couple weeks ago.

Anyway, I do have my surgery consult with UPENN on 3/31 and waiting for non-surgical consult appt at Fox Chase (once I finally get the CT Scan of my abdomen/pelvis (looks like later this week)) so I can forward everything to them prior to the consult. They (FC) will not meet with me until they have biopsy results, slides, bone scan and CT scan.

My main question centers on what my local Uro has stated he believes is my best option (surgery). This was basically in response to my question, "if it was your son sitting across from you, what would you recommend to him?" I asked him his reasoning and he simply stated "my age", actually, my lack of age. (it feels good to have someone still think you are somewhat "young"). When I asked about non-surgical treatment, he stated something to the effect that there is 12-14% higher failure rate with non-surgical over surgical 15 years out. If I was 10 years older, he may recommend non-surgical. I can only beleive that from a doctors point of view, that in any medical specialty, if you can successfully treat a patient until he/she reached the average life expectancy, you did well. So, USA males are about age 78, so is his thinking that surgery is a better option to get to 78 over non-surgical? I don't know.

But for the life of me, I cannot find these 12-15% failure rates of surgery vs. non-surgery. Is there any data that suggests one over the other? I know, there really isn't, that what makes this so tough. When I go to Fox Chase, I would be very interested to know the non-surgical options and if any 'fit' me. I see that member JNF has a similar (not exact) pathology to me and seems to be doing well in his non surgical treatment. I am actually going to bring up his exact course of treatment during the consult. I am really interested in non-surgical treatment and don't want to be 'scared' into surgery.

So, is "age" a big factor in selecting treatment? Or, is it more that a 54 year old just may have less "other" medical conditions than someone 10-15 years older and may be, overall, in better shape to recover from a surgical procedure?

Thanks again.

J
Posted 3/21/2016 2:22 PM (GMT 0)
Jay, your Uro stated similar thoughts that mine did regarding surgery and your relatively young age (you're right. It feels good to be thought of as 'young' again, lol!). While I didn't ask specifically about failure rates regarding surgery vs. other options, my doc, when I asked about radiation options, stated basically that I was "awfully young" for that (51), and went on to explain that I should recover well from surgery and radiation _could_ cause other issues down the road, i/e., bladder cancers, urethral cancer, etc. He did NOT say I WOULD develop those, but he wanted me to know of those possibilities. If I was older, I guess the line of thinking is that I would outlive those potential side effects.

I'm not trying to tell you what treatment you should pursue, and there are many arguments to be had on this site, including the 'surgeons are cutters, so of course they recommend surgery' argument, which I'm certainly not going to argue against, just as if I would have gone to see a rad doc, I have little doubt that's what they'd recommend, though I've also seen many people that had the radiation doc recommend surgery for younger patients, too.

I had to go with my gut, and I decided I didn't want it in me anymore, especially after the 3T MRI showed all appeared to be contained and my lymphnodes/seminal vesicles appeared to be clear. I decided to trust my doc, Professor of Urology, Oncology, and Director of Adult Urology at a world renowned hospital/urological facility. I also knew that until final pathology, I wouldn't really know what I had (and I was upstaged to a 3+4/7 from the initial 3+3/6 at biopsy).

I'll say this though. I'm past 7 months post-surgery now, and now at age 52, doing well, so don't let the thought of surgery freak you out. You'll likely do well, too. However, whatever treatment you decide on, I recommend that you don't look back and go into it full steam ahead.

Best of luck.

MD
Posted 3/21/2016 2:31 PM (GMT 0)
MDNative,

That is a very good point. I was just reading on this forum this past weekend of someone battling colon cancer he believed was caused by radiation for Pca years prior. I haven't seen it discussed here, so I really wasn't aware of that possibility.

I would like a non-surgical option, but, actually, I have been leaning towards surgery from day one. I still have a couple weeks to make up my mind.

Thanks again.

J
Posted 3/21/2016 2:52 PM (GMT 0)
A friend of mine, a bit older, had surgery and did very well with it both in terms of recovery and cancer control.

I was diagnosed at age 54 and was thinking I'm younger, healthy otherwise and should also do well with surgery so after several consults I went down the robotic surgery path with one of the best surgeons available having done thousands of procedures.

Keep in mind this is my own personal expectations and experience. Your mileage will no doubt vary. Not trying to push anyone in any direction. That's your choice, obviously, albeit a tough choice to make.

My surgeon said 3 to 4 weeks I would be "back to normal". It took me more like 3 to 4 months to get anywhere close to normal. Then a full year before I was back to normal at the gym in terms of running speed and weight lifting.

I developed a stricture about a month post surgery that required a very painful cytoscope, balloon dilation then followed by 30 days of daily self-cathing to be able to pee again. The dilation and cathing didn't last long term so I then underwent a laser roto-rooter to open me up again. Thankfully, knock-on-wood, the laser procedure seems to have worked and I'm able to urinate OK. Still not out of the woods on it but so far so good.

Surgeon never mentioned the possible loss in length as noted in recent posts. I'm guessing it's about an inch and a half lost. Truly a scavenger hunt while standing at the urinal.

I also developed peyronies, likely a result of surgery and/or the other procedures. While it's still less than 30% and I'm able to have intercourse it's troubling and likely to get worse before it settles down.

I'm more fortunate than some here on the forums in that I respond well to Cialis/Viagra and I'm able to have intercourse it's definitely not the same. The climax is OK at best and sometimes meeh, really that was it?

For some reason I really wanted to avoid radiation. about an equal chance at a cure radiation vs surgery it seemed like just cut it out and recover. I should be fine right? Well now my PSA is detectable, not rising thankfully, but if it does I may end up with both surgical side effects and have to endure the radiation route anyway.

Not complaining here, lots of things to be grateful for but had my friend described what I have been through I may have chosen a different path. I'm not knocking or regretting surgery - again, many guys do just fine with it or the other non surgical options, this was just my experience and my expectation of having it go perfect because I was young and otherwise healthy. Odds are you would do just fine and not have any of he issues I had but it may not be the case for everyone. Just be sure to talk with several doctors before you decide and don't assume anything.

Jon
Posted 3/21/2016 4:02 PM (GMT 0)
Jay,
you are going to have to look real hard for anything that supports those statistics. At best the cure rates are equal or slightly better for the radiation options because radiation treats the margins that are sometimes left behind after surgery. If the cancer is contained then the surgery and radiation options are equal.Positive margin rates for intermediate cancers are around 25% to 30%.
There is no doubt after looking at the quality of life studies that radiation has a lower instance of ED and especially incontinence, which is rare with radiation and common with surgery.
Surgery is usually recommended for younger patients, mainly because they heal better and are less likely to suffer the side effects common to surgery.
All studies on secondary cancers indicate very consistent results. There are zero secondary cancers with Brachytherapy and less than 1% for IMRT. The older ERBT machines in use in the 90s had about a 5% rate and this number is still thrown out a lot, even those those machines are not used anymore.
Good luck on your journey.
Posted 3/21/2016 4:54 PM (GMT 0)
I also don't know where he got the lower percentage for radiation than surgery. With modern radiation techniques it should be equal to better than surgery--keep in mind that radiation can treat an area a bit beyond the actual prostate.

Re the long-term effects of radiation, one of our moderators just published a link to a paper on that on a different thread the other day and I've copied and pasted it here: onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2012.11385.x/full. It states there's a negligible difference in colorectal and bladder cancer between treatment types, including surgery.

Good luck...I was a bit of a basket case while trying to figure out my treatment options so I know what it's like...
Posted 3/21/2016 4:56 PM (GMT 0)
Statistics from differing sources are going to rarely (if ever) be in ironclad lock step agreement with one another.

Even with my low volume 3+3's, a most respected and oft quoted radiologist at JH only gave me an 80% chance for cure. Go figure.

With your stats...I'd want the ear or a good radiation oncologist who specializes in prostate cancer treatment. A biopsy with a core of predominantly grade 4 cells (and a smattering or 4's in other cores as well with relatively higher volume)...along with a "nodule" (get another, or several, opinions on that as well), to this inconsistent and "do as I say and not as I do" mind...lends itself to a combo therapy.

I'm seeing guys on here that's had your stats do better with that than I believe they would have done with surgery or radiation alone.

Obviously, not something anyone would sign up for voluntarily. No one wants that. And I don't doubt that I might not have forgone it with your stats...eapecially if I'd had doctors telling me it wasn't necessary.

Wherever your chosen path leads you...something tells me we'll both be around in 15 years comparing notes all the same.

Good luck JayMot.

Then again...surgery or radiation either one could may very well yield you the exact same results. There's no guarantees and no refunds in medicine. And no one has all the answers.

Good luck my friend.
Posted 3/21/2016 5:07 PM (GMT 0)

John T said...
Jay,
you are going to have to look real hard for anything that supports those statistics. At best the cure rates are equal or slightly better for the radiation options because radiation treats the margins that are sometimes left behind after surgery. If the cancer is contained then the surgery and radiation options are equal.Positive margin rates for intermediate cancers are around 25% to 30%.
There is no doubt after looking at the quality of life studies that radiation has a lower instance of ED and especially incontinence, which is rare with radiation and common with surgery.
Surgery is usually recommended for younger patients, mainly because they heal better and are less likely to suffer the side effects common to surgery.
All studies on secondary cancers indicate very consistent results. There are zero secondary cancers with Brachytherapy and less than 1% for IMRT. The older ERBT machines in use in the 90s had about a 5% rate and this number is still thrown out a lot, even those those machines are not used anymore.
Good luck on your journey.

JatMot,
Some guys are amazingly lucky with surgery and recover quickly with almost insignificant SEs after just a couple of weeks or at worst a few months, and then are darned close to normal in all regards. I don't know what % these guys make up of the total who have surgery, but there are more than a few here. But there are plenty of other surgery guys who have long lasting to permanent severe, life changing SEs from surgery. There is a long list of these SEs easily found here among HWPC members.

I also think the reports of severe SEs from the RT group is much lower, but definitely not non-existent. There are a very few(seems to me) members here suffering from very severe RT SEs, which unlike the immediate effects of surgery might take years to show up. (those with SEs call it "the gift that keeps on giving") But the SE frequency does appear to me to be significantly lower. Also, some of these RT SEs might be from botched jobs, and might be becoming even less likely with newer, more advanced techniques. Still, it is not risk free.

Bottom line for me, due to the possible life altering results, just make darned sure you understand what the risk level is for your Gleason and staging and that it is worth the risk of the SEs that you might have to live with. Doctors are not always upfront with patients about the risk/reward ratio of these treatments vs danger of the disease. Understand that you have plenty of time to research and become an expert on the risk level of your diagnosis and that SOME PC has almost zero long term risk while some of them can kill you or make life miserable pretty quickly. You need to find out which category you are in before you volunteer for quite possibly life altering procedures. Don't expect the docs to spell out the details for you. Some do, many don't. They won't suffer the consequences of severe SEs for something that was not likely to hurt you bad in the 1st place. My advice: You become an expert on your disease.
Posted 3/21/2016 7:57 PM (GMT 0)
Jay,

To become an empowered patient, you will have to avoid two traps that you fell into (and it's very common).

1. Never ask a doctor what he would do, or what he'd tell his son, or his father, etc. The reason is that he is not you. He has no idea what the really important outcomes are to you, and he can only answer that based on his own values (which you do not necessarily share) and his limited treatment perspective. A doctor well trained in "shared decision making" (as most are these days) will deflect the question back at you - What treatment sounds best to you and why?

2. Don't expect a doctor in one specialty to know very much about other specialties. It's the rare doctor who does. Doctors chose their specialty and became expert at it because they think it's a good one.They don't have the time or the inclination to keep up with other specialties. They often have a full patient load and are lucky if they can keep up with some of the more important journal articles in their own field, let alone someone else's.

Age is a factor that enters into decision-making in several ways:
• Age at diagnosis is correlated with risk.
• Younger men recover better from all treatments - surgery and radiation. Impotence and urinary issues increase with age even without treatment, and treatment makes them worse.
• The younger one is when treated, the longer one has to live with whatever side effects there are.
• A combination of age and comorbidities affect life expectancy. Because PC is usually slow growing, an older man with significant comorbidities may want to opt for watchful waiting (not active surveillance).
• Older men don't do as well with anesthesia and surgery.

If you look at the doctor questions for the newly diagnosed (at the end of the sticky), you'll find a set of questions for HDR brachytherapists - it's pretty much the same questions for combo treatment with the addition of questions about adjuvant ADT and whether pelvic lymph nodes are treated, and the SEs of those. Remember that, unlike JNF and Michael-T, you do not have a high risk diagnosis. HDR can be used to treat an area outside of the prostate, so with your GS 4+3, you might be able to get away with a monotherapy (which has fewer expected SEs).
Posted 3/21/2016 9:57 PM (GMT 0)
Jay, after hearing from our brothers and speaking to two RP surgeons, a therapist, my fiance, God and doing tons of reaserch, I cancelled my RP for March 30. The testimony of our brothers struggling with ED, Incontinence and shortening is overwhelming. This forum is not the only source of those stories.

In addition, the inability to have an MRI to determine if nerve sparing RP is possible, leans me to RT, specifically HDR Brachy. Wheeler, Sloan Kettering and Fox chase said HDR brachy with bionic hips is no problem. I'm also checking with JHU about brachy although I understand they are not leaders in this area.

I have been through two hip resurfacings in the past five years. I am so tired of recovery. it took me 6 months to recover from both surgeries. don't want to do it again if possible. Plus, as a consiltant, i lost tons of work and fell on real hard financial times. I left consulting to get a regular job which I love and don't want to have to take off more than a week.

I just never thought I would have two titanium hips and chromium pellets up my ass. wasn't planning on being that type of superhero.
Posted 3/21/2016 11:31 PM (GMT 0)
One of the challenges about the long term SE's of radiation in particular is that you're looking at data related to treatment 10-15-20 years ago when equipment and techniques were, well, what they were that many years in the past. The long term SE's of treatment today won't become none for, well, a long time.

I'm one of the surgery guys who came out with minimal issues. How did I get fortunate compared to others? I don't know.

When I was making my decision my thought process went something like this:

I liked the idea of knowing my true pathology, which is only possible with surgery. I liked the idea of having my "cancer free" status happen almost immediately. The idea of having those radioactive pellets in my body for life gave me the creeps. I knew that if I went for EBRT that I'd have however many trips to get it, and the nearest spot is a 2 hour drive from home. Basically a full day off work for every treatment. Could I drive myself both ways? My attitude about sex went something like this: I still enjoyed it as much as ever, but it didn't bother me when it didn't happen. My wife has already been through the change, and her libido is pretty low as well.

So, I opted for surgery using the best surgeon at the best facility I could get to. I look at it this way when it comes to SE's: Surgery has the potential of immediate side effects that can..and frequently do...get better. Radiation has the potential of immediate short term side effects that don't last long, and the possibility of unpleasant or dangerous side effects years into the future.

Also, you're having an invasive treatment in a very complex part of your body. No matter how good the treating physician is, whether it's a surgeon or a radiation oncologist, the odds of it not going perfectly are measurable and real. It's a roll of the dice, and no one can say how a particular individual will do. This is the point where stats are giving advice, but they only go so far. There is no certainty possible.
Posted 3/22/2016 5:47 PM (GMT 0)
Hello J:

1. Of course your bone scan was clear. That test is pretty much a waste with your stats.

2. That 12%-14% increased failure rate is garbage.

3. A "non-surgical" consult sounds a bit generic. RO's are usually not expert in all aspects of radiation and due diligence would suggest you speak with experts in LDR Brachy, HDR Brachy and SBRT. THEN you can make good comparisons to your surgical consult and make an educated decision.

Jim
Posted 3/22/2016 6:37 PM (GMT 0)
Tudpock18 (Jim),

I beleive that Dr. Horwitz at Fox Chase (Philly) is a pretty good HDR Brachytherapy guy. I think Tall Allen even mentioned him to me earlier. I am really interested in this as a possible treatment. In researching it, I cannot find anything really good 10-15 years out. I guess it's because it's fairly new? I would imagine with my stats, that HDR mono is not an option, but HDR Brachy combined with IMRT (and possibly HT) may be. I will find out soon enough because I have a consult set up for early April.

So, would you think that the "regular" RO's at Fox Chase aren't that good? Tall Allen also suggested Dr. Brady at Thomas Jefferson for cyberknife. Any other non-surgical guys that anyone could recommend outside of those two guys in the Philly area?

We around here (philly metro) think that Fox Chase is a world class cancer center.....can that not be correct?

Thanks again.

J
Posted 3/22/2016 7:01 PM (GMT 0)
J, I'm not at all suggesting that Fox Chase is not a good place; it has an excellent reputation. I'm simply suggesting that "RO" is generic. A particular RO, for example, may be great at working with breast cancer patients but not so experienced with prostate cancer patients.

But, more specifically what I'm saying is that an expert in HDR Brachy may or may not have expertise in LDR Brachy and/or SBRT, etc. Your case might respond well to any or all of those radiation treatments and you should speak with experts in each...

Also, sorry but I can't recall...did you ever get a second reading on your biopsy slides? That could make a difference in choice of treatment.

Jim
Posted 3/22/2016 7:52 PM (GMT 0)
Tudpock18 (Jim),

Actually, Fox Chase will be my second opinion.....they want the slides. I am not saying that I will not get a third opinion from JHU, but one thing at time right now. It is kind of overwhelming scheduling everything and going to consults, and as we all know, life doesn't stop for Pca.

Tomorrow, 3/23/16, I have a CT Scan of Abdomen/Pelvis with Contrast. I am still a little worried what this may find. I've had some abdominal pain and some perineal pain since this diagnosis last month, but I am not sure the stress of all this, plus the biopsy itself, hasn't given rise to some digestive, stomach and perineal issues I normally would not have. We'll see.

Again, this forum is great for people that have already met and discussed treatment options with some of the top doctors in this field. I feel I don't have to start from scratch.

Thanks to all.

J
Posted 3/22/2016 10:17 PM (GMT 0)

JayMot said...
In researching it, I cannot find anything really good 10-15 years out.

The longest running published studies are in the following article, which may be of interest to you:
How long is long enough? Length of follow-up on clinical trials for primary treatments

The one change is that there is now a 9-yr followup study on SBRT, which you can get to with the link in my signature.

There are also some considerations about how to evaluate length of followup - why it sometimes matters and sometimes doesn't.
Posted 3/22/2016 11:02 PM (GMT 0)
Jack, as we have explained, there is nothing new about HDR brachytherapy. HDR brachytherapy has been actively performed by Dr Demanes since 1981. Martinez in Detroit has used it more than 20 years. I think that is long enough to understand that it works well. Robo surgery has been around less than half that period an no one questions it as an accepted practice. Demanes has published 15 year results and has 20 year history he can publish. I again suggest that you use his website to understand all this. It is very data rich and you have expressed that you are desirous of making your decisions based on the data. The website is very clear as to whom can be considered for mono therapy. Use it and you should quickly know. www.cetmc.com. A study of this information will be very useful preparation for your consult at Fox Chase. It certainly helped me when I consulted with radiation oncologists regarding both HDR and LDR brachytherapy.

Good luck,

Jack
Posted 3/23/2016 1:48 AM (GMT 0)

JayMot said...
Tudpock18 (Jim),

I beleive that Dr. Horwitz at Fox Chase (Philly) is a pretty good HDR Brachytherapy guy. I think Tall Allen even mentioned him to me earlier. I am really interested in this as a possible treatment. In researching it, I cannot find anything really good 10-15 years out. I guess it's because it's fairly new? I would imagine with my stats, that HDR mono is not an option, but HDR Brachy combined with IMRT (and possibly HT) may be. I will find out soon enough because I have a consult set up for early April.

So, would you think that the "regular" RO's at Fox Chase aren't that good? Tall Allen also suggested Dr. Brady at Thomas Jefferson for cyberknife. Any other non-surgical guys that anyone could recommend outside of those two guys in the Philly area?

We around here (philly metro) think that Fox Chase is a world class cancer center.....can that not be correct?

Thanks again.

J

J,

I had my HDB-m at FCCC with Dr Horwitz. He's one of the chairs of the RO practice there now but his specialty is HDR. FCCC pretty much switched over to HDR from LDR around year 2000 if memory serves. They still can do LDR BT if warranted but HDR is and has been their default for years now at least from what I was told. FCCC also tracks its own results and I believe they have 15 year results now - make sure to ask for them when you go for your consult.

TA already linked you to the long term studies so happy reading! 😉
Posted 3/23/2016 2:55 AM (GMT 0)
J, I hear you about all the stress related physical extras after the diagnosis. My doc gave me Xanax which miraculously makes it all go away (Back pain, headaches, dizziness, strange abdominal discomfort, crazy gas...). All started after diagnosis. I suffer from General Anxiety disorder so I know the more I read, the more I freak out. My normal dose of Effexor couldn't even keep the anxiety at bay. I keep going from "I'm gonna die" to "stop it fool and just look at your numbers." Anxiety is real and I hope no one else is suffering from it during this uncertain time.

I am balancing the desire to just get this over with (which it seems like it never is) and the need to keep on researching. Envy the guys who can take it all in and not blink.

You seem one step ahead of me. After my meet with JHU RO tomorrow, I'll be looking at Fox Chase. Have you spoken to anyone at Sloan Kettering? They do Brachy too.
Posted 3/23/2016 5:50 AM (GMT 0)
Do the BT, it will do everything surgery can do with less grief. Me I had surgery. Go figure!
Posted 3/23/2016 2:03 PM (GMT 0)

brava said...
J, I hear you about all the stress related physical extras after the diagnosis. My doc gave me Xanax which miraculously makes it all go away (Back pain, headaches, dizziness, strange abdominal discomfort, crazy gas...). All started after diagnosis. I suffer from General Anxiety disorder so I know the more I read, the more I freak out. My normal dose of Effexor couldn't even keep the anxiety at bay. I keep going from "I'm gonna die" to "stop it fool and just look at your numbers." Anxiety is real and I hope no one else is suffering from it during this uncertain time.

I am balancing the desire to just get this over with (which it seems like it never is) and the need to keep on researching. Envy the guys who can take it all in and not blink.

You seem one step ahead of me. After my meet with JHU RO tomorrow, I'll be looking at Fox Chase. Have you spoken to anyone at Sloan Kettering? They do Brachy too.

Xanax is great stuff! I was prescribed it once after having an anxiety attack of sorts back in my 20's. It is a nervous system depressant which is why it makes it all go away, as you said. wink

I think all of us experience some level of anxiety when diagnosed with PCa. Cancer impacts our mindset, at least it does for me. For many of us, it's the first time we've really come face to face with mortality - regardless of the fact that we know PCa is a slow growing cancer in most cases, and we will most likely die of something else - I still think we all "plan for the worst, hope for the best." We play out some worst case scenarios in our minds. I think this a natural thing to do. At the same time, it's a blessing. I've renewed ties with old friends that I was procrastinating about, and am making plans to travel more and even questioning my current career choices and looking at what I want to do when I grow up. cool I think many of us become more intentional about our lives post cancer Dx, and we also start to give back more - whether by sharing what we have learned on forums like this, or giving monies to cancer causes or individuals who are struggling with cancer currently, or participating in cancer events to raise funds, etc. We become more aware of the need to give back, because we all learn the valuable lesson that our time on this earth is precious.

I know we often say this on the forum, but until recently I was where you are, but once you choose your treatment, and get on the other side of it, much of the anxiety abates, as you focus on recovery, managing any side effects, and moving on with life. Hang in there Brava and J!
Posted 3/23/2016 2:17 PM (GMT 0)
Have you considered a consult at UPENN to explore the Proton Beam therapy? If you want to talk to them, consult with Neha Vapiwala, MD. She specializes in PCa therapy using the Proton Beam. Unfortunately for me, when I had my radiation therapy PENN was still building the Proton Center. Good luck.
Posted 3/23/2016 2:37 PM (GMT 0)

HitchHiker said...

brava said...
J, I hear you about all the stress related physical extras after the diagnosis. My doc gave me Xanax which miraculously makes it all go away (Back pain, headaches, dizziness, strange abdominal discomfort, crazy gas...). All started after diagnosis. I suffer from General Anxiety disorder so I know the more I read, the more I freak out. My normal dose of Effexor couldn't even keep the anxiety at bay. I keep going from "I'm gonna die" to "stop it fool and just look at your numbers." Anxiety is real and I hope no one else is suffering from it during this uncertain time.

I am balancing the desire to just get this over with (which it seems like it never is) and the need to keep on researching. Envy the guys who can take it all in and not blink.

You seem one step ahead of me. After my meet with JHU RO tomorrow, I'll be looking at Fox Chase. Have you spoken to anyone at Sloan Kettering? They do Brachy too.

Xanax is great stuff! I was prescribed it once after having an anxiety attack of sorts back in my 20's. It is a nervous system depressant which is why it makes it all go away, as you said. wink

I think all of us experience some level of anxiety when diagnosed with PCa. Cancer impacts our mindset, at least it does for me. For many of us, it's the first time we've really come face to face with mortality - regardless of the fact that we know PCa is a slow growing cancer in most cases, and we will most likely die of something else - I still think we all "plan for the worst, hope for the best." We play out some worst case scenarios in our minds. I think this a natural thing to do. At the same time, it's a blessing. I've renewed ties with old friends that I was procrastinating about, and am making plans to travel more and even questioning my current career choices and looking at what I want to do when I grow up. cool I think many of us become more intentional about our lives post cancer Dx, and we also start to give back more - whether by sharing what we have learned on forums like this, or giving monies to cancer causes or individuals who are struggling with cancer currently, or participating in cancer events to raise funds, etc. We become more aware of the need to give back, because we all learn the valuable lesson that our time on this earth is precious.

I know we often say this on the forum, but until recently I was where you are, but once you choose your treatment, and get on the other side of it, much of the anxiety abates, as you focus on recovery, managing any side effects, and moving on with life. Hang in there Brava and J!

Hitch, thanks man. Good to hear about the other side (no, not that side... Sh#t, there goes my anxiety again. You know what I'm talking about). To all others struggling through this I think Hitch's words hit it on the head for me. We probably won't die from this disease, maybe some of us will "live" because of it. Making me think about what I want next for myself. As it stands now, I want to shake this FU$&ing disease and hit another Ironman in November. Who's rolling with me?
Posted 3/23/2016 3:42 PM (GMT 0)
Jerseyguy,

Yes, I did check out Proton Beam at UPenn. However, my insurance will not cover it, says that Proton Beam is "investigational".

They do have a blind trial that my insurance would cover, but that would be a 50/50 shot at either IMRT or Proton.

Thanks for the heads-up anyway.

J
Posted 3/23/2016 4:15 PM (GMT 0)
Not sure what the absolute cutoff is on surgery but I had it at 70. One thing was my surgeon said I probably had the lowest BMI of any patient he'd ever operated on.

Well, I am kind of skinny......
✚ New Topic ✚ Reply