Topic: I Have Prostate Cancer

[edbikerii]

No Bobby, I don't have you on ignore.  That's somebody else.

I'm not familiar with New Zealand and the wait times and technologies available under their health-payment system, so I'll let Hush's experience speak for itself.

Since you mentioned me, I have some advice for you.  http://nyp.org/services/oncology/prostate.html

Pay them a visit.

Radiation can really #$%* up other things down there, and leave you with side effects that are unrelated to the cancer, such as fecal incontinence, rectal bleeding, etc., even if you have the radioactive seeds implanted.  I'm sure they'd do a better job at NYP, but I've seen radiation horror stories from elsewhere.  I'd go for the surgery (if the docs at NYP agree, of course).

Don't worry too much, Bobby.  When discovered early, as I think yours was, pc survival rates are near 100%.  I personally know several people who are prostate cancer survivors, undergone surgeries, and live pretty normal lives, (including normal erectile function).  I have one family member whose PC spread to his lungs, and he's been fine for a few years with nothing more than female hormone pills of some sort.

Good luck,

Ed

Certainly thorough BobbyR, we don't get all those choices here in New Zealand and specialists are booked up months in advance.

I am fortunate, most people don't have the choices. I live in the NY metro and like most major cities we have a large number of specialists and major medical centers. I also pay through the nose for private insurance every month, and I am lucky many good people accept that Company, some do not. From my research, the exact same treatments and machines are available in NZ. I think Ed has me on ignore so we will not get into that.

The treatment at this stage come down to surgery and radiation. One surgery is the old tried and true open procedure. There are two bundles of nerves that run on either side of the gland. These nerves control the bladder and erections. If the surgeon is skilled and they can, they will dissect them out and move those out of the way. They will be traumatized so they need to heal and in some cases they do not.

There is a robotic machine which claims to be better, but the jury is out on that, they need several hundred procedures under their belt to get really good at it. The robot arms are very precise, but the surgeon cannot feel and they have been trained to work by feel.

Radiation has the same cure rate outcomes and the nerves can be spared, but if they are damaged the effect will show up a couple of years later, so it is a waiting game with that.

No matter which way you go, your life will be different, not really diminished if you are lucky, just different.

[BobbyR]

Thanks for the info Ed. I was planning to consult with them. I have a just come back from a visit with a very respected specialist here in Westchester. He is very detail oriented and I will have a special MRI so we can see what is really up in there. While he is a surgeon, he may recommend radiation since the newest machines are accurate and most of the data is from older machines that radiated everything. Today's latest machines are like a sniper rifle than a shotgun.

I was thinking today about the situation beyond health issues that may benefit the younger members here and help them prepare for some of the collateral issues they may face in the future.

At this point I would probably not be able to obtain Life Insurance, or pay a large sum for low coverage amount. I would suggest you lock in whatever coverage you can afford while you are young. This a good strategy since we all ride motorcycles.

A Will and Health Proxy is also a very good idea, for all of the above reasons.

I am very fortunate that I retired from IBM and it is one of their stipulations is that any Health Insurance provider they offer cannot deny you or surcharge you for a preexisting condition. I would check on this if you change jobs or if you are intending to stay with one company.

I am glad you are not ignoring me Ed, there may be some things on the Babe Thread you may enjoy.  




      

[Kframe]

Well I rarely check the Open Forum so I didn't see this thread until today.

Sorry to hear about your diagnosis Bobby, it sounds like your doctors know what they're doing and things should go well. 

My Dad had prostate cancer 3 years ago and had to have it removed, but now he's cancer free and living life like he always has. 

Good luck man!
-K

[Head]

Thoughts and Prayers  For you and your Loved ones,    Head

[bill440cars]

       Bobby, just wondered how things were going and felt like I needed to touch base.
   I know that you are taking things serious and taking care of business, but can't help
   be concerned anyway. Take care and KNOW that we are pulling for you on this.

                           Have a GOOD one Bobby. Bill

[Hush]

Plus one on that Bill, what's the latest Bobby?

[BobbyR]

I am still interviewing Doctors. I had a Radiation Oncologist and Urologist appointments in the past two weeks. Everyone pulls out the glove at some point; I guess I may as well just walk in backwards from now on.

There are only two options two types of Surgery and two types of Radiation. Each has it's good point. If some cells snuck out of the gland, they have to clean that out with Radiation later. So this Radiation fellow directs his beams lightly outside the margins surgery can go which seems to be the norm. He helped develop the machines at Sloan Kettering and his work is well published.

They use hormones to shrink the gland and it also interferes with the Cancer growing. Unfortunately you get some significant side effects like hot flashes and fatigue. One member and I have been messaging and he has not had big problems with that. Some people he knows do have real problems. Some have told me that they shirk it first so they have more room around it. He laughed, and told me when it shrinks, everything around it moves back with it. So there is no extra room

The Urologist is super aggressive and just opens you up and takes out the Prostate, nerves, and lymph nodes. Which is fine except once you take out the nerves, getting everything functioning again is very difficult or impossible.

Other Surgeons try to spare the nerves and use a robotic machine to work through small incisions. The outcomes are variable depending on your situation and the skill of the Surgeon in using this machine. Some are so used to working by feel they have a hard time making the transition.

So I have all of this data to sort out. I have spoken to every local Doc of note. Now I will be going to Columbia University to speak to Doctor who with his team deals only with Urinary Cancers and they do research. I have read some of his work and his team uses a large number of treatments and tailors treatments to balance Cancer outcomes with quality of life. I may have been working with people who are very good at one thing, so they do their thing.

Quality of life is the key. One fellow asked me if I wanted quality of life or longevity. I looked at him and said, “you gotta be sh1tting me”.

[azuredesign]

Bobby,

Is one of the radiation techniques implanting radioactive "seeds"? This seems to have worked well for a couple of people I know. Has it been shown that the prostatectomy has a better prognosis than radiation? Last I looked there was not a significant difference in prognosis( depending on staging) and it sure does mess with you.

Best wishes!
Ben

[edbikerii]

Yes, it sounds harsh, but that Dr. is being brutally honest with you.  I have learned to appreciate that in a doctor (and just about everywhere else, too).  The best odds at longevity are always the most aggressive removal techniques, in which, as you alluded to, they remove everything in the area and within some safety margin, including the lymph nodes and nerves, and that may result in erectile dysfunction, as well as other, even more unpleasant side-effects.

I guess it is sort of like the breast cancer question of would you like a radical mastectomy which has an 85% 5-year disease-free survival rate, or would you try a lumpectomy which only has a 30% 5-year disease-free survival rate?  [* no, I have not looked up these breast cancer statistics, they are just from memory a couple years ago]

If you are willing and able to monitor things carefully, you may get away with the higher risk, better quality of life procedures and the doctors will treat any recurrences if and when they arise.  However, there are no guarantees about how and where any recurrence or metastasis will occur, and whether it will be treatable at that time.

Quality of life is the key. One fellow asked me if I wanted quality of life or longevity. I looked at him and said, “you gotta be sh1tting me”.

[Retro Rocket]

that may result in erectile dysfunction, as well

That will definitely end up with erectile dysfunction, once those nerves go it is extremely rare to get that function back. Here in Australia we are at the forefront of Breast and prostate cancer surgeries and it is now normal NOT to have a full mastectomy, lumpectomy plus treatment is as successful as a full mastectomy now and our radiation therapies are the world standard in treatment now with machines that are laser guided and extremely accurate there is no need for such extreme surgeries. I have a friend that was treated with this technology 12 months ago and he has a clean bill of health. He had some stomach irritation from the radation therapy but now he is all good..

Mick

[Hush]

Damn you Bobby I nearly snorted my coffee....walking in backwards ha ha.
If they are gonna give you hormones in that area tell them you want the ones that make for big breasts.....you never know, the side effect may pay some dividends!
You certainly have researched your subject well, I tend to go see a Dr and if they say we suggest this or that treatment I just say "OK".
I guess we don't have the range of specialists in this wee country, I better emigrate to Aussie if I need anything really serious done.

[BobbyR]

I thank you all for your concern. Here is the conundrum. I have Cancer that is a fact that will not change unless I deal with it. The Radiation Oncologist treated my Father at age 82 for it. However the Dr. told me forget your Father's situation since each of you is different.

I am not a candidate for seeds are far as I now now, since it appears to be hottest in a spot that is tough to get seeds into. When I get to Columbia that situation may change since it is a well regarded for research and it has a Medical School, so they work on the leading edge.

I am going for a very uncomfortable MRI procedure which involves a magnetic coil inserted near the gland to give them a hi def picture of the gland and maybe they can see something. In any case they will use this image to load into the software that controls the radiation machine if I decide to go that way.

While the machines were developed here, they are in larger use in Europe and Asia including Australia. The Surgeons have been able to hold the high ground in the US. The large peer reviewed studies where Radiation is used is done in those Countries and the results are very good.

Now back to quality of life. There is a lot of literature in Urology Journals talking about being too aggressive for people in early stages. The most aggressive treatments may be overkill and best reserved for those with later stage disease since the damage caused is necessary to sustain life. In someone like me leave you can do more harm than good and reduce the long term quality of life beyond the erectile dysfunction.

So I will assume any conservative effective treatment lasts 15 years which is the benchmark, I would be 74 when I would have to deal with this again. Considering my non holistic background, 74 is a decent run. Based on what they can do today compared to 15 years ago, time may be on my side.

Well I have more thinking to do and I think some Woodford Reserve Bourbon is in order.  

[Retro Rocket]

With the break throughs in modern medicine coming almost weekly these days you will probably find that in 15 years it will be curable, and if not curable then the treatments will be a lot better.  In Australia they have just discovered that Kangaroos produce an enzyme that kills skin cancer as soon as it starts making changes to the cells structure, when they can synthesize that enzyme they will have the cure for skin cancer, these type of break throughs  are leading edge and will have a dramatic effect on how we treat cancers in the future.  Hope all goes well for you Bobby...

Mick

[bucky katt]

i'm getting the ol' poke and prod tuesday. along with the first full on checkup i've had since i was 18. wonder what they'll find? 

[Hush]

OK now for some bad taste comedy.

[BobbyR]

OK now for some bad taste comedy.

That is funny and Low Rawls is one of my favorites. That was a colonsocopy not a prostate exam. Prostate thank God is very simple. Don;t scare people like that.

I spent 45 minutes in an MRI tube with a special probe inserted for clearer pictures. After being in that tube all that time, I am changing my will to cremation. 

[BobbyR]

I have talked to enough Doctors and completed a specialized MRI which involved the use of a somewhat large magnetic coil inserted, and an IV line in my hand to inject a contrast solution. It was a rough 45 minutes and I know now what claustrophobia feels like.

It is my nature to collect as much data as possible, think about it a while and then move forward. Some think I procrastinate, but it is my way.

The MRI showed while the the Cancer volume is low at this point, it is positioned in a place where in time it would break loose and I would be in a world of sh1t.

I have chosen External Beam Radiation without Hormone therapy. The side effects of the Hormone Therapy is of great help to some people. In my case at best it would improve the outcome 2% but there is no data to support that. The side effects would range from serious bone loss, high blood pressure, Diabetes, no libido and heart attacks. So, I think I will decline that.

The reason I chose this type of radiation is that is effective in reaching places surgery cannot go and get any cells that may have gotten away. In fact when surgery fails which is does regularly, they use this form or precision radiation to salvage you. So we will be hitting the likey spots now, rather than later.

Of course, there will be some side effects but with the new targeted machines they are minimal. I have read a lot about the low quality of life from overly agressive treatments, so I have chosen the middle road.

It would appear that Bobby has once again dodged the bullet, or the Devil does not want me yet.

 I will start treatments in couple of weeks. They will be doing some special CT scans and combining it with the MRI images to build a 3D model of my pelvic area so the machine can be programmed to target the areas they want to hit and minimize damage to normal tissue.


       

[Retro Rocket]

Good luck Bobby...

Mick

[bill440cars]

      Bobby, I don't HAVE to tell you that YOU are in my Prayers Bro...............................
.....................But I will! You've got a Good head on your shoulders, taken this thing by the horns and I Pray that ALL WILL go well, cause You, My M, Are needed Both There AND HERE! Keep us posted Buddy and KNOW that the Prayers Are coming!

                                           As with the others, I'M here for ya, Bill

[my78k]

Bobby, I know you didn't start this thread to toot your own horn or anything but it is definitely inspiring. 

With cancer on both sides of my family I can only assume that in time I will be in your shoes. I can only hope that I handle it as well and level headed as you have (and continue to).

Dennis

[BobbyR]

First of all, Mick, Dennis, and Bill thanks for the encouragement.

I will admit there were times of doubt and some moments of despair. I wish of course this never happened, but it did. I have always been a lucky guy and I use that as a base to work from. My luck is not the hit the lottery luck, it is having a potentially crappy situation work out OK luck. My wife tells me my best quality is that I never give up until I find a good solution. It has worked up to this point, and I hope it works this time too.

Here is the problem that plagues us all in life. The World is full on noise and every time you take on a project you find a lot of conflicting information. If you want to buy a house, everyone you know has an opinion. Want to pick a career, buy a car everyone has an opinion. Here is the hard part, you have to figure out who knows what they are talking about, and who has a bias. What you have to do is try and filter out the noise and figure out what makes sense for you. The one thing that can get you into trouble is just going with the flow, since it is easy.

I have made my decision, and I hope I got it right. I will keep you posted. And I thank you from the bottom of my heart for the good wishes.    

  

[Hush]

Go get em Bobby, heck if we can resurrect 30 year old bikes from swamps and barns I'm sure keeping you running shouldn't be a problem.
I admire the way you have gone about this, planning a battle strategy and selecting the path with the most chance of delivering you a good result.
May all things go your way my friend.....Hush.

[Ecosse]

just catching up bobby. my prayers are with you but it sounds to me you're blessed with sound judgment that's stood up well against trying times.

moments of despair? i'd be concerned if you didn't have them. and i have to wholeheartedly agree with your observation about the "noise" of conflicting information or uncertainty. frankly, in some ways it's every bit as bad as the problem faced when the wrong choices can compound trouble. that's why i think your strategy of compiling info and deliberating before making choices is anything but procrastination.

your attitude is the key to getting through this and with it i think you already have this f#cker beat.

[von_Wanderlust]

your attitude is the key to getting through this and with it i think you already have this f#cker beat.

Hey mate, haven't had much to add, but have been following your progress. I think that Ecosse has hit the nail on the head, you're going to get this thing sorted out fine. 

[BobbyR]

It is reality time. On Friday I go through the Radiation "simulation". I will be put in the machine which is equipped with it's own CT scanner. It will make a 3D image of my insides, and the MRI will be loaded into the machine as well. The Oncologist and a Physicist will use the machines software to aim the beams and their intensity to hit the Prostate  and a bit around it hard while limiting exposure to as much healthy tissue as possible. I will receive one treatment daily for Mon-Fri for 45-48 days. Hope I guessed right. The Oncologist has high confidence for a cure. I will settle for 20 more years and riding seasons.