Rethinking treatment options

RichardRS
RichardRS Member Posts: 44
edited March 2014 in Prostate Cancer #1
Many thanks to you who responded to my questions on catheter management. It is very encouraging to know that there are wise and sympathetic friends from whom to seek counsel.

Being conservative and looking for a "second opinion" I consulted a oncology radiologist. I came away even more confused about the options and merits of alternative treatments. To make a long story short, I retraced all the information I had and spoke with several specialists, and concluded that for me, the best option is Robotic Prostatectomy. I wrote myself a decision memo, which for those interested I am adding below. This decision process can be very confusing.

The good news is that my PSA has dropped from 6.8 to 5.2. I was concerned it was headed up.

Again many thanks for the good wishes, Richard

Here is the information I have gathered to date.

I have had 3 "separate opinions" from top specialists plus have used
the various online "decision" systems from Sloan-Kettering, American Cancer Society,
and The Prostate Research Foundation and have come up with the same conclusion each time.

Given the test results, and the combinational analysis tools, something is going on in my prostate and it has begun to accelerate. My concern now is: the Adenocarcinoma is not "early stage" but is at a point of spreading to other tissue.

PSA jumped from 2.2 a year ago, to 3.2 in May to 6.8 in September. 5 of 8 biopsy samples were positive. Gleason Score: 3+4=7 in two regions, 3+3=6 in three regions, Stage: T1c, . Biopsy samples from right central and right apex lobe are 100% CA, Right bottom and central regions 70% CA, One sample from Left Lobe edge, 5% CA. Three samples from Left Central lobe show no CA. Perineural Invasion (PNI) found in one right sample. No palpable tumors on DRE. Bone Scan negative for metastatic disease. MRI results: No obvious extracapsular disease. Central gland is enlarged by stromal benign prostatic hyperplasia. There is evidence of chronic outlet obstruction given mild diffuse bladder wall thickening.

"Watchful Waiting" is not an option. Nor is cryo freezing of the gland. My choice is surgery, OR massive radiation 8200, OR radiation at 4600 plus implant of radioactive seeds with radiation 8500 for a total dosage of 13,100. I have an enlarged prostate making radiation more difficult. If I have radiation now, it is very difficult to have later surgery if the cancer recurs. The side effects of radiation seem to be more profound then surgery, particularly robotic surgery. I have some constriction now in the urethra and radiation tends to aggravate this.

With surgery, they are able to exactly determine if there is any spread to lymph nodes, seminal vesicles, or surrounding tissue. This surgeon performs biopsy examination of all margins during the surgery and keeps "shaving" tissue until he comes up with a cancer free margin.

Following surgery and pathology analysis, a determination is made as to whether radiation is appropriate at that time do to invasion of the cancer beyond the prostate. If the cancer appears contained, I then monitor my PSA monthly for the next 12 months. It should be less than 0.1. If not, that indicates that the cancer remains in some form.

Given my test scores there is a 15-20% probability of recurrence in 5-7 years.

As my very wise internist said: "Waiting is not an option. Of the treatments, each one has shown to have an 80% cure rate. Each patient who is cured is sure that he made the correct and only choice. Those that are not cured, usually have an aggressive form of cancer."

My conclusion is that I need to find out what I have and that the Robotic surgery is the best option for both cure and detailed diagnosis. It also has the best prognosis for regaining urinary control and erectile function. In my case, the surgeon will take part or all of the right nerve, given the PNI on the right side.

Comments

  • fcatroneo
    fcatroneo Member Posts: 89
    Right On..... have robotic surgery. As a Urologist said to me "when in doubt, take it out". I had my surgery in December, 2006. It wasn't even robotic and it was a breeze. I was out of the hospital in 2 days and took pain medications for 1 day. The robotic procedure is the "gold standard'. You seem to have done your homework and you have definitely made the right decision. I am on the Board of Directors for the Georgia Prostate Cancer Coalition and I can assure you that you are making the right decision.
    Frank
  • 2ndBase
    2ndBase Member Posts: 220
    I had a more severe case of PC than you and chose to go with radiation and hormone therapy. In your case i would think that you are probably right to chose surgery but I believe your urinary control issue is less of a problem if you choose radiation verses surgery. There is the option of cryolation if radiation does not get all the cancer in the prostate. If you believe the cancer has spread outside the prostate you would probably be advised to have the hormone therapy. I have survived 5 years and was given a 50% chance to survie two years at the time of dx. Obviously you have to choose and believe in what path you take. The actual data of success and failure is in my opinion pretty weak and anybody can make stats look good or bad. Avoiding stress will do more to extend your life than almost anything. So have faith in the option you choose and let the concerns of decision-making and what may happen down the road just not be worrysome. You will survive this and life will be all you make it.
  • rogermoore
    rogermoore Member Posts: 264 Member
    Richard,

    Congratulations on making your treatment decision. It appears you have researched the situation well and are confident you are making the correct choice.

    As you know, and have heard before, those of us that have survived and recovered from a particular type of treatment, assume our type was the best. Therefore, in my humble opinion, you have made the right decision.

    Know you have all of our prayers and hopes for a speedy and complete recovery.

    Roger
  • RichardRS
    RichardRS Member Posts: 44
    Thank you all for your insights and comments. They are most helpful.. I am going ahead on Wed Dec 12 with the Robotic surgery. Thanks for many tips and suggestions on what to stock pre-op and how to anticipate the steps and inconveniences to recovery. I am glad so many have gone forward with such great success. I read an amazing article in the December New Yorker on Cancer, Evolution and Retro Virus. "Darwin's Surprise"
    http://www.newyorker.com/reporting/2007/12/03/071203fa_fact_specter
  • jhenrymaine
    jhenrymaine Member Posts: 8
    Richard RS, I concur with your decision to have the robotic prostatectomy. I'm now six weeks out from my RP surgery on Oct. 31. I am back at work (glad that I took a full four weeks off) and my healing has been very good. You may recall from my posting that a second tumor was found in my right lobe with Gleason 4+5 = 9 (.7 cm). So I face the prospect of recurrence, but my doctor and the pathologist BOTH agreed that I was wise to remove it knowing that my Gleason score on the known tumor was only 3+3=6. I just got my first PSA test back yesterday and it was <.2 ng/ml, or less than detectable. I'm thrilled to get this baseline! Now, I'll be monitored every three months for the first year. I'm glad I got more aerobically fit before surgery, as it aided my recovery. I'm still losing weight and gaining my strength back. My incontinence is markedly better (dry all night and until about 3:00 pm, then leakage begins). I will now start a course of "penile rehabilitation" using Muse (urethral-inserted pellet), Viagra, and a penis vacuum device. I'm confident that I'll get sexual function back in good time. And...I pray that my new diet high in antioxidants will fight to reduce chances of recurrence. You've done some excellent research...now get that cancer out of your body!
    P.S. A tip -- if you take antibiotics after surgery as I did, you may get a fungal infection on your penis after catheter is removed. I got this on Thanksgiving Day -- it was hell! Use Lotrimin liberally to keep it protected. That made a huge difference and cleared up the itching in 24-48 hours.
  • RichardRS
    RichardRS Member Posts: 44

    Richard RS, I concur with your decision to have the robotic prostatectomy. I'm now six weeks out from my RP surgery on Oct. 31. I am back at work (glad that I took a full four weeks off) and my healing has been very good. You may recall from my posting that a second tumor was found in my right lobe with Gleason 4+5 = 9 (.7 cm). So I face the prospect of recurrence, but my doctor and the pathologist BOTH agreed that I was wise to remove it knowing that my Gleason score on the known tumor was only 3+3=6. I just got my first PSA test back yesterday and it was <.2 ng/ml, or less than detectable. I'm thrilled to get this baseline! Now, I'll be monitored every three months for the first year. I'm glad I got more aerobically fit before surgery, as it aided my recovery. I'm still losing weight and gaining my strength back. My incontinence is markedly better (dry all night and until about 3:00 pm, then leakage begins). I will now start a course of "penile rehabilitation" using Muse (urethral-inserted pellet), Viagra, and a penis vacuum device. I'm confident that I'll get sexual function back in good time. And...I pray that my new diet high in antioxidants will fight to reduce chances of recurrence. You've done some excellent research...now get that cancer out of your body!
    P.S. A tip -- if you take antibiotics after surgery as I did, you may get a fungal infection on your penis after catheter is removed. I got this on Thanksgiving Day -- it was hell! Use Lotrimin liberally to keep it protected. That made a huge difference and cleared up the itching in 24-48 hours.</p>

    JHenry. Thanks for your tip re antibiotics. Following a suggestion to get fit before surgery, I found a bargin for a time-share in Aruba for a week of swimming and snorkeling. It is an odd feeling to be fit and energetic knowing that Wed I will feel less so. I followed some of your earlier posts and concerns so am glad to hear of your low PSA.

    I have long enjoyed sailing the coast of Maine from Penobscot Bay down East.
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