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Making a Treatment Decision

FranklinFamily
Posts: 2
Joined: Jul 2009

My father is 62 years old. We just found out two weeks ago that he has prostate cancer. I will give you a brief history of his problems. He had a PSA test about 2 years ago, His PSA level at the time was around 5. He never followed up with a specialist. In November of last year, he could not urinate & his body was swollen. We took him to the ER & they did a CT scan. He had lesions on both kidneys so they referred him to a urologist. The urologist decided that the lesions were most likely Stage 1 lesions & no tests were run. He checked my father's prostate on that visit & his prostate was enlarged. The urologist prescribed him medicine & scheduled him for a PSA test in January. His PSA was a 7.1. The urologist prescribed him an antibiotic & re-scheduled another PSA test in March. The results from that PSA test was a 6.9. My father had a biopsy done on June 1st. They took 10 samples. Out of the 10, 8 were malignant. Perineural invasion was also present. His Gleason score is a 3+3=6.

The urologist told him that he has 3 options - surgery, beam radiation or seed radiation. We have been researching the different options & are trying to make a decision. He has not seen the specialist yet so we are not sure if the cancer is contained in his prostate or if it has spread elsewhere.

We would greatly appreciate any advice or suggestions that any one may have. Are there any certain tests that you think the doctor should run before treatments? Do you think we should be worried about his kidneys now that we know he has cancer in his prostate? We are pretty much clueless as to what we should be doing or asking the doctor. Any advice would help.

Thanks!

wolf
Posts: 7
Joined: Apr 2002

Hi Franklins,
From my experience as a PC survivor I would say that the first thing is to get educated about all the treatment options and what the side effects are. You have time so there is no hurry – PC is relatively slow growing and growth can be stopped and the tumors shrunk with hormone suppression therapy – reducing testosterone to near zero with drugs (PC cells need testosterone to grow). Hormone suppression is not curative but is effective for a number of years.

There are several options for ‘curative’ therapy (curative is in quotes since I have never heard a urologist or oncologist use the word cure – in remission is preferred). The first treatment everyone thinks of is surgery since for a long time it was the only curative modality available for PC and became the gold standard as it was successful with about 90% of patients treated. Read the posts here by patients who have had surgery and you will see that the likely side effects are impotence and incontinence. Most people who have surgery want to ‘get rid of the cancer’ and view surgery as the only way to do that. With ‘nerve sparing’ surgery a bundle of nerves in the prostate are ‘spared’ or not removed. Most patients with this kind of surgery do not become impotent but it is done only when the cancer in the very initial stages – otherwise it is likely to ‘spare’ cancer cells as well.

Many seem to believe that surgery is more successful than, for instance, radiation by several percentage points. Any good radiation oncologist will point out that they treat a lot of patients when surgery is not indicated because of the possibility that the cancer has spread beyond the gland and surgery is unlikely to ‘get it all.’ These marginal patients probably account for the difference in success rate. Then there is the fact that surgery is difficult and not likely to be successful if the cancer returns after radiation treatment; but if surgery is not successful it is still possible to get radiation treatments. I never understood this argument since radiation does kill the cancer and if radiation of a larger area than surgery can remove is unsuccessful I don’t see what later surgery could do to alleviate the disease.

Other than surgery there is radiation (x-ray and proton beam, radioactive seed implants), cryosurgery (freezing the cancer with probes that are inserted), ultrasound heating of the tumors (relatively new) and likely some other modalities that I am not aware of. All of these treatment options are successful to some degree and all have their side effects.
X-ray external beam radiation (even with the sophisticated beam shaping techniques now available) sometimes burn the colon and/or the urethra severely enough to cause problems that may require surgery to correct. Cryosurgery similarly sometimes destroys tissue other than the cancer. Don’t know much about radioactive seed implants and ultrasound is relatively new. The one modality that most patients say has no appreciable side effects is external proton beam radiation. Its success rate, like surgery and x-ray radiation is around 90%. The reason is that protons do not destroy the tissue it passes through – the energy is released when the proton stops. Techniques are available to precisely shape the proton beam and control the energy of the protons so that all the energy is released on the intended target.

I was diagnosed with PC in 1994 at the age of 63. My PSA was 102.6 and Gleason 6. I was treated at Loma Linda U. Med. Ctr. in California with external proton beam radiation. I had no side effects and my PSA promptly went to 0.5 and has been at 0.3 for over 10 years. Obviously I recommend this modality. If you want more information about proton beam radiation I suggest these sites:

http://www.protonbob.com/proton-treatment-homepage.asp (Check testimonials.)
http://www.protons.com/

In the USA proton beam therapy is also available in Sacramento, California at the University of California, Davis, the UC Davis Proton Facility. Since 2004, the Midwest Proton Radiotherapy Institute at Indiana University, and, in 2006, the University of Texas M. D. Anderson Cancer Center in Houston TX, and the University of Florida Proton Therapy Institute in Jacksonville, FL. Also I have heard that Massachusetts General Hospital in Boston has the capability.

Wolf

Swingshiftworker
Posts: 1013
Joined: Mar 2010

FYI, I just checked on UC Davis' website and called them about their use of PBT and found that they are currently ONLY using PBT for eye cancer -- not prostate cancer. UC Davis is also in a research partnership w/Lawrence Livermore Lab to developed a compact and less expensive cyclotron for PBT to make it more widely available for cancer treatment, but that research is still in progress.

lshick's picture
lshick
Posts: 62
Joined: Apr 2009

I will second Wolf's comments. There are no doctors here, so we don't give out medical advice. You'll find that nearly all of us who have "been through the mill" will recommend whatever treatment modality each of us chose. Since you don't know my tradeoffs, my choice--even though it worked for me--might be utterly wrong for him.

Assuming (and this is the first thing you need to double check) that there's no metastasis, the various mainstream treatments (surgery, radiation, etc.) offer *roughly* the same survival rates. That means that he gets to choose from among them based upon quality-of-life issues, convenience, what his insurer will cover, and so on.

Major point: what the medical world calls "co-morbidities." Obesity, diabetes--to be blunt, is he dying of anything else? That will weigh in on choice of treatment. What is his life expectancy, prostate cancer aside? If he's not otherwise healthy, it may be that something else is likely to kill him first, in which case, the complications and downsides of any PCa treatment may not be warranted.

Major point: if you have access to a really skilled and experienced practitioner for technology X (say, surgery) but only mediocre practitioners for technology Y (say, radiation), go with skill and experience, which will trump technology (among the mainstream treatments) almost every time.

I went with robotic surgery (my story is at http://www.sv-moira.com and scroll down to "prostate cancer"). I'm happy with my choice (so far--call me after my next PSA test) but my choice could well be totally wrong for him.

Visit (my favorites):

http://www.yananow.net/
http://www.healingwell.com/community/default.aspx?f=35
http://www.guideline.gov/summary/summary.aspx?doc_id=12380&nbr=6409&ss=6&xl=999
http://prostatecancerinfolink.net/

and (in my opinion) the most powerful:
https://www.cancer.nexcura.com/Secure/InterfaceSecure.asp?CB=265

...which requires lots of data (some of which you won't have--don't let that bother you, come back and fill it in as you get it). But it gives you relatively easy access to the fine print and the assumptions and the uncertainties in each recommendation.

Take a deep breath, and reflect that you probably have plenty of time to make this decision deliberately. A Gleason 6 is far from the most aggressive. PCa is *usually* a slow-growing threat. Learn all you can before you pull the trigger.

Welcome to the club that nobody wants to be in. Lots of good people here to help.

shipjim's picture
shipjim
Posts: 137
Joined: Apr 2006

Get in to the specialist, read up first and ask lots of questions be a regular pain in the behind on that count. Find out his/her experience with what ever they recommend then go see someone else.
Once you have solid facts and all the tests like ct scan, bone scan etc you can begin to decide.
Keep us posted on this site so we can talk you thru this. It is one of the site's great strengths, we all have been there. jj

lshick's picture
lshick
Posts: 62
Joined: Apr 2009

PS: on the kidneys. Yes, be worried about them. But whatever is going on there--if anything--is (based upon what I've read) unlikely to be related to whatever is going on with his prostate. When PCa metastasizes, it seems to like to head for the bones (hips, spine), not to soft tissue.

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

Sorry to hear about your father. You have some good advice on here all ready and all I can add is as stated get as educated as you can on the disease and be there for your dad.
My dad had and was treated for prostate cancer in 1996-1997 with Proton treatment at Loma Linda California and is doing great 12 years post treatment. I just found out this year (age 54) That I have Prostate Cancer. I researched Loma Linda and My insurance will not pay for it so I'm scheduled for Robotic surgery on August 12th. My Gleason is 5 samples positive with Gleason 7's Majority 4+3 with signs of perineural invasion also present.

What part of the country are you in? Seek different opinions and study all you can. If you decide that Robotic surgery is the option make sure and seek out a Dr. with lots of experience under their belt with the robot since it has a high learning curve and from what I've read the surgeon's skill can make a difference in the patients recovery.

Larry

FranklinFamily
Posts: 2
Joined: Jul 2009

Thanks for all the advice. We are still in shock.But I have Faith that God will work everything out for the best.

But_Wiser
Posts: 4
Joined: Mar 2010

Dear Frank,

You are lucky in many ways than I was. My Father's cancer was diagnosed when it was far gone. The gleason score was like your father. 3+3=6. Its moderate. Please follow what Wolf has recommended. He seems to be very well posted with the problems being a survivor. Hope your father gets well soon.

Ali

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