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"watchful waiting"

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Hello Brothers,

I am 66, in execelent health, eating right with regular exercise. A urologist found a growth in the cavitiy, not on the prostate, so I had a biopsy March 2, 2009. Two of twelve core contained low amount of cancer .05/100, on the right side. My gleason is 3+3=6. My PSA is 2.2 and has been at this level for a couple of years. The urologist who did the biopsy told me that there was a very low chance that it spread beyond the prostate, and that I am a good candidate for any treatment option (that they would all like me as a patient).

I went to a person who calls himself a oncology doctor at Long Beach Memorial, Long Beach, CA. He examined my prostate a few weeks after the biopsy, told me that my prostate was medium to large and that he felt bumbs on the prostate, and that he thought that my range was between I think a 2c and a 3b, and that there is a 40 percent cnance that the cancer spread outside the prostate, and he wanted me to go for a bone scan and an MRI.

Well I read in a urological guide line that a bone scan is not recommended , unless special circumstances for a gleason that is less than 8. I also did not get an MRI there because I made an appt. to see a robotic surgeon at another institution.

Basically, this guy made me very nervous.

About two weeks after, I saw a "world class" surgeon, told him my story. Immediately, he told me that I am a candidate for Watchful waiting, that I have indolent cancer (not likely to spread), felt that that was the way to go, and he thought negatively about the radiation man; apparently you can't tell the stage by feeling the prostate, and wspecially after a biopsy. (so watch out for sharks in your quest for mediical attention).

Well now, I would like to find out exactly what the recommended protocol is for "watchful waiting" so I can be informed. Any suggestions on how to find this?

Any opinions about the choice of this treatment option "watchful aiting".

Not being a medical professional what other things do you think that I should take into consideration?

Thanks,

hopeful and opt...
Posts: 1363
Joined: Apr 2009

radiation onchologist who want to sell me treatment consisting of external, temp braky, and heat.

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

This is a personal choice. Myself, I went to a robotic surgeon and got it out then I didn't have to have to do any "Worrying Waiting" the side effects are less than waiting and being wrong.
Good luck on your decision. jj

edward22
Posts: 2
Joined: Apr 2009

I was 78 and biopsy positive gleason 6(3+3) 1 needle of 2 at right apex core only1%
my oncoligest suggested seeds.My prostate was enlarged so that poses a problem because
in order to place the seeds it is a line of sight condition and you would not be able
to seed the entire prostate.external beam was the next option,but there is not only
damage entering but exiting also causes damage.
After a great deal of searching I found the proton beam center at university of Florida.
I went there signed up,went back for 3 day medical check up and one more biopsy at which
time 3 gold seeds were implanted at location of cancer.This is used to direct the beam.
My biopsy came back negative and at this time I was offered the option of watchful waiting.
I thaught it was a good option.I rebiopsied three times at 6 month periods and each was
negative.I will be going back in July this year.I am not sure if a biopsy will be done.
My psa is stable.I am asymptomatic.I spoke to a few of the patients that were in there last
month and they say it is a piece of cake,no side effects.My doctor there said that if I
was younger it would be a desirable option to go forward with treatment.
I suggest you visit the www.floridaproton.org. Robert Marckini did his proton treatment in
Loma Linda University Medical Center,California.He also published a book.You can beat prostate
canser without surgery. isbn 978 0 6151 4022 3
I run , bike also have some marathons in the past and at 80 it will be a tough decision
what to do if the next biopsy comes back positive.It is said that prostate cancer in 10 years
will be metastasis.
I hope I have been of some help
ed

Ralphie62
Posts: 51
Joined: Feb 2010

Edward, we are really thinking proton beam in Fla, and have recently contacted them, are waiting on Insurance authorization....were you pleased with your appointment and their general care?? Have you decided if you would go with the routine regime or the new shorter protocol?? My husband and I would really like to exchange thoughts with someone recently involved with proton.....ralphie's wife

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Actually, I made a mistake, the doctor recommended "active surveillance", not watchful waiting. The protocol that the doctor talked about is quarterly PSA's annual biopsy, and annual MRI and MRS(Spectroscopy) which improves the accuracy of the MRI. By the way the MRS is considered investigational and as I understand not covered by medicare, so this will cost me 900.00 There are probably other things involved in the protocol, but I don't really know what they are. I wonder, how quickly this will alert the doctor to any changes in my condition.

At a support group , I spoke with a man who has been receiving hormone therapy for a few years, that he claims with success. I wonder if that is worth considering to slow the growth of my cancer for a while so I will not have to do the operation or radiation. I wonder how severe the side effects will be?

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I will gladly talk to you about the side effects of hormone therapy and you can call me at home. My # 765-759-5841. I have personal experience with several treatments and will try to help you with this problem. Thanks. Mark

hopeful and opt...
Posts: 1363
Joined: Apr 2009

I will call...........Ira

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Today, Mark and I enjoyed a very good conversation. It was a pleasure to share with Mark. Thanks Mark for your willingness to list your telephone number...............Ira

Paraplu
Posts: 37
Joined: Feb 2009

Waiting for what?

Ok, more ... waiting until is has spread? Waiting until you are too old to go through surgery? Waiting and not knowing what the hec is going on inside? Waiting until it is much larger?

Yeah, waiting for what?

PS.
My 2 cents for what it is worth

hopeful and opt...
Posts: 1363
Joined: Apr 2009

I mentioned Active Surveilance to various people, mostly all think that I should do the surgery now , and be done with it.

I am going for an MRI and MRS on Thursday so my decision may be made for me to have the surgery.

n the other hand there are various studies. There is one among American men that lasted from 1985 to 2000, the researchers found that between 23 percent and 42 percent of prostate cancers identified by PSA testing are so slow-growing that they probably would never have posed a health threat.

In other words, most of these men would have lived a full life and died form another cause entirely, never knowing they had these slow-growing cancers. Instead the authors maintain, the men were subjected to unnecessary treatment as well as the psychological trauma that goes along with cancer diagnosis.

Now, at UCLA where I am going they carefully monitor in active surveilance, doing annual mri/mrs and biopsy and quarterly psa's. I am formulating some questions for the doc. one being what do my numbers have to be or change in my numbers in order to have surgery. I think that this will appropriate after the mri/mrs.

Of course, I would prefer to simply monitor, and take proactive actions where I can, and enjoy a high quality of life under active surveilance. I guess the key question is how well will UCLA monitor my cancer.

Now Theo, I am not married to this treatment option, active surveilance and am open to robotic surgery. I don't think I have to rush to come up with a decision.

Anyway, thank for the comments. I am still doing research and will really consider them.

Thanks again, Theo

Ira

Ira

Paraplu
Posts: 37
Joined: Feb 2009

Hi Ira,

I understand that at some point, depending on age, one could decide that one probably does not live long enough to have the cancer create a problem. I always think that I'm going to be much older than I'll probably be.

Looking at the statistics, there are roughly 168,000 men diagnosed with PC each year in this country. The mortality rate shows that 15% dies each year. PC is the second leading cause of cancer deaths after Lung Cancer. This is an actual cancer and as such should be treated that way. The earlier the better. Tell your friends to get tested, do a biopsy when in doubt and catch it while you're young(er).

Yes, if I were in my 80's and I had a 3+3 with less than 5% cancer in the prostate, I would reconsider my decision. Anything short of that 'when in doubt, take it out'.

But Ira, we're all different. We all need to be able to live with our decisions. Mine was to take it out and bottom line is that I feel pretty good that it is gone. I'm imagining peeing again like a youngster as there is nothing to squeeze the pipe so to speak. I already have morning erections, even with the catheter in. So there may be some incontinence, which we'll find out after Friday am when the tube comes out, but a small price to pay to feel that there is nothing left than can grow out of control, no matter how slow it grows.

Good luck with your decision. In the end it does not matter what anyone here says or does or has done. In the end there is only one person who can make this decision: You

It ain't easy. Good luck Ira
Theo

JoeMac's picture
JoeMac
Posts: 77
Joined: Jun 2008

Aloha Ira,
I think that you are headed in the right direction with the facts as you see them. There is a lot of good info on the net:
http://www.yananow.net
http://www.cancercare.org
You can call CancerCare & talk to a trained counceler about your situation.
Most PCa men do not understand what they may (good chance) loose after treatment. I did not have a treatment choice, & I was one of the unlucky ones.
If you want to talk ... go to yananow.net & look for
Faith, Hope, & Love,
Joe 67 Hamakua Coast

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Thanks for the input,I will definitely follow up. Although I live in So. CA. Hawaii is in my heart. I've been playing the "jumping flea" Kamaka Tenor for over four years now. I play with different groups, in most there are Hawaiians, several get up and dance while we play. We perform for various senior groups, nursing homes, hosptitals, schools, festivals, etc.Sometimes we get lucky and get food for playing. Playing the ukulele is a big thing here, with over 2000 paid admissions at the ukulele festivals held in Oct.

Ira

JoeMac's picture
JoeMac
Posts: 77
Joined: Jun 2008

Aloha Ira,
OK, I need a little enlightnment on what playing the "jumping flea" Kamaka Tenor means. Sounds like you have a good meal ticket there.
I'm not sure that talking to me would help with the PCa, but Hawaii YES..YES! I have a package deal, so me calling you is a no cost deal. There is a web site that has my number to get started.
http://www.angelfire.com/art/paddles/
Then I can get your number.
Faith, Hope, & Love,
Joe 67 Hamakua Coast

hopeful and opt...
Posts: 1363
Joined: Apr 2009

About 1879, a ship with portugues workers came to Hawaii. There was and still is a portuguese instrument called a Braguina (sp). One of the people on the ship jumped off , started to play this instrument. When the hawaiians saw and heard the man playing they were impressed with how fast his fingers moved and called it a ukulele (jumping flea in hawaiian). The was some minor changes to the intrument, and so the ukulele got started.

There are various manufacturers, and sizes for ukuleles. Kamamaka is a Hawaiian based manufaturer, they are known for excellence. There are different size ukulele's-- soprano, concert, tenor and baratone.

My telephone number here in so ca is (562)431-4630

ira

hopeful and opt...
Posts: 1363
Joined: Apr 2009

About 1879, a ship with portugues workers came to Hawaii. There was and still is a portuguese instrument called a Braguina (sp). One of the people on the ship jumped off , started to play this instrument. When the hawaiians saw and heard the man playing they were impressed with how fast his fingers moved and called it a ukulele (jumping flea in hawaiian). The was some minor changes to the intrument, and so the ukulele got started.

There are various manufacturers, and sizes for ukuleles. Kamamaka is a Hawaiian based manufaturer, they are known for excellence. There are different size ukulele's-- soprano, concert, tenor and baratone.

My telephone number here in so ca is (562)431-4630

ira

hopeful and opt...
Posts: 1363
Joined: Apr 2009

About 1879, a ship with portugues workers came to Hawaii. There was and still is a portuguese instrument called a Braguina (sp). One of the people on the ship jumped off , started to play this instrument. When the hawaiians saw and heard the man playing they were impressed with how fast his fingers moved and called it a ukulele (jumping flea in hawaiian). The was some minor changes to the intrument, and so the ukulele got started.

There are various manufacturers, and sizes for ukuleles. Kamamaka is a Hawaiian based manufaturer, they are known for excellence. There are different size ukulele's-- soprano, concert, tenor and baratone.

My telephone number here in so ca is (562)431-4630

ira

Sach100
Posts: 4
Joined: Oct 2009

I was glad to see your post as my statistics are similar to yours. Gleason 3 plus 3 = 6; PSA 3.67 (doubled in the past year); age 65; digital rectal exam normal; twelve core biopsy showed one core with less than 5% cancer . My urologist/surgeon strongly pushed robotic surgery asap (Nov. 30). However, I was already scheduled for urethral stricture surgery at a Urologic Reconstructive Institute at Detroit Receiving Hospital and decided to go ahead with that first as that urologist/ surgeon said I really didn't have room for a foley catheter with any degree of comfort unless the stricture was taken care of. I had that surgery Sept. 8 and recovery is coming along well. The stricture surgeon strongly advised me to look at watchful waiting based on my stats.

So, I sent to Henry Ford Vattikuti Institute for Prostate Cancer for a second opinion. My experience there was so different in a positive way. A physicians assistant spent about an hour with my wife and I just discussing various options, my stats, and answering questions. Then the surgeon came in and spent at least another 30 minutes with us, during which time he stepped out and called the surgeon who had done my stricture surgery. They both agreed Nov. 30 was too soon for robotic surgery and that I should wait until January before making any decisions - give the stricture repair plenty of time to heal. So I canceled my Nov. 30 surgery and am trying to read up some on Watchful Waiting (Active Surveillance) and keep abreast of people's experiences on this web site. Should I decide to have the surgery I am definitely going to go with Henry Ford - I liked their approach, the surgeon's experience (over 700 robotic surgeries) and the use of the supra-pubic catheter. I had the foley in for 10 days after the stricture surgery and disliked it intensely. I have done some research on the suprapubic and all indications are that it is far more comfortable than the foley, has no more complications than the foley and, based on Sonny's rendition, more amenable to regaining urinary control quicker.

Vattikuti surgeon said if Active Surveillance is my ultimate choice that he would do PSA twice per year and biopsy and prostate massage once per year. He did not push surgery and said that that is always an option if the patient changes his mind or stats show it is beginning to spread. I will have a 6 month PSA done toward the end of December and an appointment at Henry Ford in early January.

Should anyone have good website/resources on Active Surveillance or advice I would appreciate it.

Sach100

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Here I am, and still on active surveillance. Basically, I plan to do this as long as possible if not for the rest of my life, keeping a high quality of life, then I will probably go for robotic surgery, or maybe even a new procedure that may be invented in the future.

Since I was diagnosed last march, there has been a change in my PSA that was taken in Jan. 2.2 to 2.5 in July which of course is a concern. I had an MRI/MRS which showed no nodule involvement.........I am staged at a TI.

I also had a molecular test which showed that there is a 97 percent chance that my cancer will not spread in the next 8 years..........now, in all honestly this test is a little mickey mouse since there is a fairly low specificity in find the bad tumors....but it did confirm the treatment that I choose "active surveillance.

One thing that my doc at ucla told me when I saw him, and really makes sense to me, is to go on with my life, not fixate on this disease (in all honesty before I was diagnosed I didn't know what a prostate was, but afterward, I became a prostate cancer groupie going to several support groups, internet, etc, etc.----now I limit the times that I go to support groups is when a professional talks about an interest that I may have.-----my doc told me that he is a world class surgeon which I really believe, and he can do the surgery with a very high level of success if I can't live with active surveillance.....Anyway I am going on with my life with active surveillence..........it took me a few months to get over the shock and determine what steps I will take if the the disease progresses/

As far as protocol for active surveillance there are differences depending on the institution resources and the doctor.

I guess the doubling time is something that you need to look into. I'm not a doc, but you might want to have a MRI/MRS endorectal with a spectroscopy to see where you currently stand.

Feel free to respond with any questions or comments. By the way where do you live?

Good Luck,

Ira

Ira

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