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Advice for newly diagnosed

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

My husband, age 62, was just diagnosed with prostate cancer: multifocal 3/12+,stage- cT1C, grade- Gleason 3+3=6. The doc gave him the options of watchful waiting, a couple of different choices of radiation treatments, or DaVince method of prostate removal. After having read lots of info, he is leaning toward removal. Any advice on choices? If you have had the surgery, how long were you in the hospital and how long for recovery? Having just finished treatments for breast cancer I know that these discussion boards are the way to find out the real story on treatments. We appreciate all info you have.
Scout

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Sorry that your husband has been diagnosed with this disease, however there appears to be early detection, so there are choices.

Before commenting , please provide more detailed information.

Is the gleason 3+3=6 in each positive core?

What is the involvement of each, that is what is the percent positive in each core?

How has his PSA's been running during the last few years?

Has he had any other tests?

How is his general health?

Did you get a second opinion of the pathology from a different institution where they are expert, if not you need to?

Ira

Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI(tesla 1.5) with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Entered in a research study for active surveillance at UCLA.
PSA at UCLA, 5/24/10....different institution than had previously used (will go back to the other group that I had been going to better compare PSA's over time
June 2010 ...MRI(tesla 3.0)
June 2010.....Three dimensional targeted biopsy ( based on MRI and ultrasound ability from this biopsy)......15 cores of which 3 are targeted....no cancer found.
Johns Hopkins.......second opinion confirm no cancer

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

Gleason 3+3=6, 3 of 12 cores positive- 5% involvement in two and 7% involvement in one.
PSA- I think it was .4 four years ago, .8 two years ago, 1.6 a few weeks ago.
No other tests performed, just got biopsy results a couple of days ago.
General health is excellent, mountain bikes every other day. Urologist said he seems 10 years younger than age due to fitness level.
Will seek second opinion.
Thanks

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Dd your husband ride his bike before the PSA....bike riding, sex , digital rectal exam before a PSA elevates the PSA.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

One factor that influenced my decision (I had open surgery) was when my surgeon said I could have surgery and if necessary, follow up with radiation (it wasn't necessary). However, if I had radiation first followed by surgery, the radiation could turn the tissues into "mush" and it's like operating on jello. In other words, radiation makes follow-up surgery problematic. I chose the surgery as my primary weapon and held radiation in reserve. So far, four years of undetectable PSA's.

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

I had read a little about the mush factor but it wasn't mentioned much in the literature we've read. It seems like an important part to consider when deciding on which route to go. Thank you.

ob66
Posts: 214
Joined: Apr 2010

Santa Cruz County is one of the most beautiful places in the world to live. I lived there for 7 years after 32 years in Los Gatos, CA. One thing I will say is that it is not a mecca for medicine----considered "rural" in it's payment schedules to MDs. Does not mean you cannot find a good MD there, but in my 7 years there I had 4 internists (not because I was such a bad patient, but because they could not earn a good enough living in the SC Medical Group). I would extend my second opinions to the silicon valley, but especially where you have gone to UCSF, one of the best medical institutions in the world. Stanford held higher esteem in the past but has fallen a bit. But then do understand, the quality of your care is no better, or no worse than your personal doctor (and that may even be in SC County, despite what I have said). As I got older I moved to Orange Co. for a warmer climate and better medical care (from SC County). Not meant to offend, but to inform.

steckley
Posts: 100
Joined: Aug 2009

Scout,

My numbers were similar to those of your husbands, and I chose DaVinci surgery.

Because of your husbands numbers he may be a good candidate for several ptions. I recommend you study one or more of the many excellent books covering PCa; one is Dr. Patrick Walsh's, "Guide to Surviving Prostate Cancer" before you make a decision. Dr. Walsh does seem to prefer open surgery; howver, also discusses other options.

Some guys are very concerned about quality of life issues (i.e. Erectile Dysfunction). You may want to watch Dr. Mulhall's lectures (I believe there are three at about 1.5 hours), especially if your husband is considering surgery. The lectures are at:

www.mskcc.org/mskcc/html/94910.cfm

Good luck on what ever course you choose.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Sorry to hear that your husband has this disease but you are both fortunate that this was discovered early and that your numbers (at least what you have provided) seem to indicate that you have several potential options for treating the disease.

I would be wary of comments from others about characteristics of some of the various types of treatment or those who strongly favor their method of combating the cancer over any others. For example, radiation does NOT turn your organs or surrounding tissue to "mush." Certain types of radiation may cause scarring in some areas that makes follow-on surgery more difficult but the overall success rates of modern radiation treatments means that very few men need any sort of follow on surgery anyway, so the whole issue is really moot. If the cancer spreads beyond the prostate after radiation then the removal of the prostate will not cure the disease and other courses of action are more appropriate.

About 70% of men in the United States choose surgical removal of the prostate as their main treatment course. Of these, about 30% will see a rise in PSA following their surgery and will require follow-up radiation often with a combination of hormone therapy. While most men who have surgery regain full urinary continence and a varying ability to achieve erections, returning to a "normal" quality of life may be problematical. This forum is filled with threads by men who suffer debilitating quality of life issues following surgery that includes incontinence, erectile dysfunction, penile shrinkage, and other side effects. Make sure the doctors explain in great detail what the potential side effects of their treatment specialty.

There are several types of radiation that successfully treat early stage prostate cancer with extremely high efficacy and much fewer side effects than surgery. Some of these include proton therapy, brachytherapy, HDR brachytherapy, IGRT, XBRT, CyberKnife, IMRT. All have advantages and disadvantages which must be carefully weighed against the specific pathology of your husband's cancer.

There are other treatments as well that include localized cyrosurgery, HIFU, and Active Surveillance. AS, as Ira mentioned in his blog is a very viable option for men with early stage prostate cancer because there is a good probabililty that your husband's disease will never progress beyond the slow-growing indolent stage that was described in your postings.

You have really do your homework on this disease and trust nobody to make these important decisions for you. Urologists are mostly surgeons and over 90% of them will recommend surgery. Radiologists overwhelmingly recommend radiation treatment. In my own case, I read ten books, dozens of medical studies, perused hundreds of blog postings, and consulted with six specialists before making my decision. When I finally made my choices, I was confident I knew what I was getting in to, but even then I kept having second thoughts.

I would urge you to get a complete copy of all of your medical records, calculate your PSA velocity, PSA doubling time, PSA density, and so forth so that you have these statistics readily available when you begin learning about the choices you have to treat PCa.

After you have done your studies, I suggest you make a choice that has the best option of curing your husband's disease the first time, and not worry about whatever fall back plans might be out there. This is a very treatable disease.

The other thing to keep in mind, and I am sure the supecialists you consult with will confirm this, is that in your husband's case this is a very treatable disease and most any option you choose will likely be successful and this is a disease you will die with, not from. Your decision then is to choose a treatment option that promises the least side effects and impact on your quality of life.
Best of luck to you as you start this journey.

===========================================
Age at Dx: 59. DX PSA 4.3, Tx PSA 2.8 (after elimination of dairy)
DRE normal. No history of PCa in the family.
Biopsy: 1 of 12 cores positive with ardenocarcinoma, 15% involvement.
Gleason: 3+3=6, Stage T1c
PCa diagnosed in March 2010. Treatment with Cyberknife radiation in June 2010.
Side effects: None

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

Thanks for your thorough answer. We will begin our search for his best option in treatment.

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

Thanks for the recommendations for books and lectures. We will read and watch them. With the DaVinci surgery, how long were you in the hospital and how long did it take for you to feel strong and well?

steckley
Posts: 100
Joined: Aug 2009

Scout,

Sorry for delay in getting back to you.

I was in the hospital one day. I had surgery in the morning; up and walking in the afternoon; and reurned home the next day. It was only a 15 mile ride home ... don't think I would have wanted to go further.

I needed a lot of help the first week (thank God for my wife's help); slept in the recliner.

The cath came out after a week and the amount of help I needed after that went to zero. But I was moving slow and carefully. I was lucky and had no leakage problems after the cath was removed. By the third week my walks had increased to over a mile and I was feeling pretty good. I think around week six I felt normal, but had the occasional pain.

I work part time (consult) so I did not have to go to work each day ... if I did I don't think I could have done it on a daily basis untill after week 4.

Hope this helps ... if you have any questions, please feel free to ask.

Good luck with your research and best wishes to you and your husband.

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

Steckley- Thanks for the detailed information about your post-op experience. This helps tremendously.

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

Steckley- Thanks for the detailed information about your post-op experience. This helps tremendously.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Kongo gave you very good advice........there are many options available....they all want you because of your low numbers..be cautioned that there are docs that are finacially motivated, and will try to direct you toward their treatment specialty , so they can make money on you, or there are docs that are not very competent....by the way where do you live, and what medical care is available in your area.... if you choose an active treatment option you may have to travel for medical care.

Also remember that you have no rush at all, but continually do your research...your number are very low.

I was diagnosed at my 66 birthday(what a present), with numbers similiar to you.........I did a lot of research....and initially I decided to speak to doctors with various specialties.....first I saw a radiation oncologist who wanted to give me a bone scan, MRI,,,,told me that I had a 50 percent chance that the cancer has spread outside the prostate , also told me that I had 8 weeks to take action and wanted to do braky and external radiation on me....well, the urologist that I initially saw told me that there is a 1 percent chance that it was outside the capsule.........so, one of these docs was full of it.

At this point I went to ucla to see a expert, saw a "world class" surgeon who told me thzt I was a perfect candidate for active surveillance..he didn't want to discuss any surgery with me, and frankly dismissed me after a few minutes....it was the best time I spent with any doctor .....this was a year and a half ago...he was an honest man, he did not try to sell me his service. check my numbers in the above post........

I am happily doing the active surveillance , hopefully for life.....I am being closely monitored, and can and will do a different treatment option if my number change........I have no physical side effects at all.....so for the last year and half things have been good for me.

Also if you click my name you will see the results of an active surveillance study that was done, and other pertinent information.

good luck

Ira

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

We live in Santa Cruz, CA. Hope to have second opinion at UCSF. Thanks for your input.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

and I've heard a lot of good things about them.....at least one of the posters here is using them.....if I lived in the San Francisco area I would probably use them....I know some here in southern ca who travel to use them.

I don't know if they are or are not recognized as experts in pathology. Two that come to mind are Boswick and Johns Hopkins.

Ira

john721
Posts: 2
Joined: Jun 2010

will take valium and cipro in morning!!! Do you lay on table when they do this? The dr just had me bend over one for the initial exam!!!! How did you feel immediately afterward? were you able to sit comfortably? did you have to be catheterized? Were you able to eat normally that day? dr said results in two days, also doing bone scan!! any info will be helpful!!! Thanks John

hopeful and opt...
Posts: 1278
Joined: Apr 2009

and please tell, why are you doing a bone scan.

Ira

johnnyt617
Posts: 6
Joined: Aug 2010

Hey John (I'm John too)... the biopsy is not the most comfortable or enjoyable experience that you'll every have :-) but... certainly it's important for you to find out whether or not you have the cancer - so - I found myself realizing that and it helped me get through it... it will seem forever while you're lying on the table and the doc will do his best to get you through it...but... you will be glad you did it in the end (no pun intended)...
I seem to remember eating regularly after the biopsy.. had to do the enema first thing in the a.m. and no food or drink for 12 hours before...
My doc had me do a cat scan and bone scan too after the biopsy results were positive for the prostate cancer... that was to see if it had spread. (It hadn't).... it's worth knowing that to help make your choices... Good luck & God Bless (p.s. I'm cancer free after having the prostatectomy on July 9th).... Johnny T

Trew
Posts: 891
Joined: Jan 2010

You should read Ralphie62's comments in the thread about the Latest Newsletter from LLU on Proton threapy. You can find it by scrolling down a bit. and then contack Ralphie62 about their experience with proton therapy at the UFL proton facility. It would be worth your time.

NM
Posts: 214
Joined: Jul 2009

The surgery(davinci) was actually easier on me than the biopsy as my biopsy got infected. I was in the hospital overnight. Had a cath in for 6 days, then when removed absolutely no incontinence and I havent watched what I eat or drink and I do heavy lifting. Also so far no return of my cancer next test next week. 1 year anniversary too. Now for the bad part. No return of sexual function and I still take the pills and hope maybe someday.

Not much information about numbers and such as I expect you researched them. Just a more personal view. I am not sure if sex matters as to some it doesnt but both must be prepared as to what might happen.

Would I do it again meaning surgery, I have mulled this over and still I cant give you an answer. Cancer killed my dad in a slow painful way. so i believe i would go the same route. I guess life was more important than sexual activity and still I am alive to hope that might return.

Sorry about the length of post and I wanted to add more but a long post wasnt my intention just a more person view.

Good luck on the decision you have to make and prayers with you both.

Nick age 53.

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

Thanks for all of your thoughts and recommendations. I am going to have my husband read all of your comments tonight. I have been filling him in on some of the comments as they have popped up and what he said is that it's great to have so many different opinions. It has convinced us to follow through on at least a second opinion, possibly more. His doc's office told us today that we could get into UC San Francisco for sure for another opinion. Thanks and we wish all of you health and happiness.
Scout & Doug

JR1949
Posts: 230
Joined: Jun 2009

Scout and Doug,
You have some good advice and as everybody says, you don't have to rush into this. Your numbers are low and you have fortunately caught this early. I was 60 when I was diagnosed with prostate cancer, PSA 22, Gleason 7 all 12 February 2009, radical prostatectomy March 2009. My options were more limited due to high PSA and my my decision became quantity of life instead of quality of life. My urologist discussed all of the options and told me that you need to consider that if you have radiation your options are limited if the cancer should return because of the scar tissue resulting from radiation.

I am now five months postop and my PSA is still 0.008, incontinence is getting better now, sexual function not there yet but my wife of 36 years still loves me. So it is an individual decision you have to make after considering all options and the side effects. I suggest that you and your wife go together on your urologist office visits. Your physical condition is good and that is a plus for you. My advice is keep a positive attitude as you start on your journey with prostate cancer. Feel free to ask any questions you have and someone on this network will be glad to give you advice and answer your questions.

I wish you the best of health and happiness.
JR

bdhilton
Posts: 752
Joined: Jan 2010

Lots of good advice given to you and your husband but in the end it needs to be your husband’s decision on the treatment with your support (from my perspective) and as you see there is not one best treatment to keep this beast at bay. I would recommend that you and your husband check out the Prostate Cancer Foundation (the largest single donor to research on this beast) web site for all sort of great advise and relevant news..

The best to you and your husband in this journey…

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

I agree that the decision for treatment must be my husband's, with me there to support that decision. My goal is to make this process easier for him by gathering information and letting him process it. Having just been through breast cancer I know that you need to become a specialist in your disease to really make wise decisions. Thanks for your help. Scout

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I don't want to start an argument about what radiation does prior to surgical intervention. However, my comments were based on what my surgeon told me at Johns Hopkins Hospital when I was deciding on a treatment. I know you'll do the research on this and I'm glad I at least created a question in your mind. I did find this on a cancer-related web site:

Richard Whittington, MD, Associate Professor of Radiation Oncology at the University of Pennsylvania School of Medicine:

There are few surgeons who will do prostatectomy after radiation therapy. The major problem is the fibrosis (scarring) caused by either surgery or radiation. It really does not matter what the first treatment is, the second treatment is typically always more difficult. After any surgery, it is much more difficult to do a second surgery in the same area because of the fibrosis from the first surgery. It is also more difficult to do surgery after radiation because of fibrosis.

After radiation, a surgeon needs to put his hand through the fibrosis. It is difficult for him/her to distinguish the bladder from the prostate from the rectum. When a surgeon goes in to take the prostate out, he/she sees a large ball of scar tissue that the bladder, rectum, and prostate are in there somewhere. The tissue planes that allow you to separate one organ from another are obliterated. If you are aggressive in removing the prostate, you risk damaging the bladder or the rectum.

johnnyt617
Posts: 6
Joined: Aug 2010

Hi ... I totally agree that this is where to get the "real scoop"... I just joined this website today and am already glad I did. I got diagnosed on April 1st and my numbers looked about the same as your husband's ... My wife was also very supportive like you and she attended my meetings witht he docs as we found out about the options... mine may have been a little more aggressive, but nevertheless...I chose (notice I said "I" and not "We" ... because my wife definitely had her thoughts and opinions - but knew that in the end, the decision had to be mine.)... I chose to have the radical prostatectomy... which I did on July 9th and have been told I'm cancer-free. I'm happy about that. The catheter was my biggest concern pre-surgery and it turned out to be a no-brainer post surgery... at first I didn't feel like I knew how to care for it - but my wife strapped on the rubber gloves and cleaned it the first time ... I then "manned up" and started taking care of it myself. I'm currently wearing pads in tighty-whitey's for the incontinence, which for me hasn't been bad. I do the "Kegel" exercises as much as I can and think of to keep the incontinence to a minimum too. I'm just getting ready to address the sexual dysfunction...but...that's a whole different story for me and my wife (we've been somewhat separated for the past 4 years...no regular sex anyway)... but... I want to get back to some sexual activity and I know she deserves that... don't mean to ramble...but..this is my first time on here so I'm finding that my fingers want to type a lot for now.. I wish you and your husband the very best of luck and God Bless you... Johnny T

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

Thanks everyone for all of the information, insight, and personal experiences. We are set for a second opinion at UCSF. We wish all of you health and happiness. Scout

mrspjd
Posts: 688
Joined: Apr 2010

UCSF, University of California @ San Francisco, is a great place to go for a 2nd (or 1st) opinion--some very well respected, published, experienced, and skilled docs there. It's one of the institutions we (pjd) used for a consult and further testing. Their Rad Oncology Dept has the Tesla 3 MRI (only a few institutions nationwide have this newer '3' model). It gives a higher definition read of the images. If an endo-rectal MRI/MSRI is appropriate for your husbands PCa staging, you might want to ask if their clinical study using the Tesla 3 MRI with Spec is still recruiting & enrolling participants. Best to both of you.
mrs pjd

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