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BRONZE

David Linn and Susan live in Virginia, USA. He was 69 when he was diagnosed on October 18, 2011. His initial PSA was 5.6 ng/ml, his Gleason Score was 4+4=8 and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

During an appointment with my family doctor, I was told that my PSA was creeping up a little faster than he liked and felt I may need to see a urologist. My PSA was 3.3 at that point. He stated that before I do that though, he would like me to go on Cipro for 10 days to see if that is the cause of the rising PSA. Well after the 10 days and another PSA, the PSA dropped to 2.9. I thought: hooray, I am doing good. His thoughts were that the drop was NOT enough, and I should probably see an urologist.

In May of 2009, I had my 1st appointment with the urologist, who of course wanted to do a biopsy; I said, lets just watch it because the numbers seem to be OK. He told me that the PSA velocity and the upwards trend were cause for concern. Consequently, we continued to monitor my PSA until July of 2011 when the PSA hit 5.5. This number did catch my attention, and the uro stated that a biopsy should be done. I countered with, lets try 30 days of Cipro to see what happens. I was hoping that my PSA would take a nosedive, but instead it rose to 5.6 in ONE month.

I told the uro that I think the time for a biopsy was now. So, we scheduled it, and I read all the horror stories about the pain and bleeding and all the rest. But, instead my experience was nothing like it. My biopsy was better than most dental appointments. The doc did a great job.

A week later, my wife and I went to the urologist office for the pathology report. I knew I had a 50/50 shot at having PCa at my age Almost 70), so I thought at worst, it would be a Gleason 6, and I would elect watchful waiting and that would be that. BUT NO! Out of the 12 cores, 2 of them had 4+4=8 GS, with 20% and 30% volume. I was shocked and couldn't believe it until I saw it.

The uro mention surgery, and I out-of-hand, said no. He then mentioned seeds and radiation and ADT. My head was spinning, as I was operating in denial and having a sick, crappy feeling deep within. I am healthy; I feel great; I have cancer, not the kind I can ignore; rather the kind, I must treat, whether I like it or not if I care at all about those who love me.

So here I am. I have an appointment with a radiation oncologist next Friday, Nov. 11, 2011. To be continued..

Later: Well the saga continues: Had my 1st consult with the radiation oncologist that my urologist suggested, and was really impressed. Ironically he is local and has treated more than 3,000 guys much like me.

His plan of attack, even with 2 cores with Gleason 8s, 20%--30% respectively, was that he is NOT a fan of hormonal therapy. He told me if my Gleason was 15 and/or the size of the tumor was more extensive, he may reconsider. However, he wants to do seeds and some external radiation without the hormonal therapy. My urologist wanted me on TWO years of ADT plus the seeds plus the external radiation. My oncologist disagrees.

So, on Monday, it is up to me to tell the urologist what I want to do. I was ecstatic to hear of the no ADT approach, and I know there are pros and cons to it, but the side effects of hormonal therapy isn't worth the risk for the statistical potential benefit. Yes ADT statistically ticks up the longevity to some in my Gleason 8 group, but the side effects. When I weigh it all, I am happy to take a calculated risk for the benefit of an increase in quality of life.

It is understandable why David is concerned by the thought of ADT. Some men do have adverse reactions. Others, like me, find the side effects tolerable. Perhaps these words of Platinum Member, Chuck Maack may provide some comfort:

ADT is NOT the horrendous treatment that some claim it to be, and many of those who claim so never even had the treatment themselves – they rather echo someone else’s comments who may have experienced some of the side effects that can occur, but that person likely had no idea how he could have relieved whatever side effects he is complaining about. “I” have been on/off/on/off and only recently back on androgen deprivation therapy FOR THE PAST 15 YEARS!

Read more on Chuck's site The Prostate Advocate.

Later: Following a very positive consultation with my radiation oncologist on Friday, Nov 11, 2011, I met with my urologist today, Nov. 14, 2011, to talk a little about my desire to opt out of ADT and use brachytherapy and IMRT together WITHOUT 2 years of ADT.

My radiation oncologist frankly stated not being a fan of ADT, especially with my 5.6 PSA, 2 biopsy cores located side-by-side, together with GS 4+4=8s but only 20% and 30% respectively. He said if my PSA was 15 or above and/or the core volumes were more, he may think differently.

My urologist stated not having any problem with those thoughts either but stated that some studies suggest better outcomes by adding ADT. I agreed but told him I was willing to take that calculated risk in favor of quality of life (QO)L. Consequently, I should have the brachytherapy implants in early Dec. and start the IMRT 2 months later.

In the mean time, I am scheduled to have a bone scan and a CT scan in 2 days. Both my urologist and oncologist stated that they'd be shocked if either test showed anything, but of course, I will be happier to hear that after the fact. I will update as the saga develops. :>)

Later: My CT and bone scan came back negative, clean. Although that does not mean that I absolutely have prostate contained cancer, it is still good news for me. After receiving news of having cancer, even PCa, any tests that come back positive are VERY welcomed. [errr....not so, what you want is negative test results, which is indeed positive news!! See Basic Language hints on this page.]

I am scheduled for the Brachytherapy procedure on Dec. 14, 2011. I had my pre-opt physical a few days ago, and was told I am in excellent health. Ironically, my "good health" would not allow me to qualify for a large life insurance policy, not with PCa.

 

UPDATED

December 2011

 

December 14, 2011: Today, I had 53 Iodine-125 encapsulated seeds implanted into my prostate. Had general anesthesia, was out like a light, don't remember a thing. I feel absolutely great, however having burning and decreased urinary flow when urinating. I am hoping that the burning goes away and the flow intensity will improve over time. IT was, so far, a wonderful experience.

Developing...

December 17, 2011: Oh, yes there was some burning initially and some slowed urinary flow, but after a day or so, it is gone. What I think has helped me is that I have been following the post-opt instructions of an ice pack placed in the perineum area for 20 minutes per hour during my awake time and 8oz of water every hour.

Bottom line is every thing is back to normal with a little residual discomfort in the bum area: sitting can be uncomfortable. I am aware that when the seeds begin to do emit radiation, things may change, but for now, all is well.

Had a bowel movement 2 days post-opt, which was welcomed--oh the little things. The next thing is a CT scan to check on seed locations and to discuss IMRT to happen in 2 months to "clean up" any residule cancer cells looking to show up later. That is the plan.

Hope to continue posting for others who come after me, because those who have gone before me have helped me so very much! Thanks to so many here for your help. Thanks especially to Terry! :>).

 

UPDATED

January 2012

 

Well, it will be 4 weeks tomorrow Janaury 11, 2012 that I had my brachytherapy. All is well! I do have a little urinary frequency and a reduced urinary stream. Some nights I get up more often than others, BUT I am doing well, very pleased.

Today, because of my Gleason 8, I had a consultation with the radiation oncologist's people. I will be starting external beam radiation in mid Feb, so I had 3 very small tatoos placed in the pelvis area. I think this gives them a reference point to assist in aiming the beam just right and the same for every single treatment. They also took leg impressions to place my legs in the same position every time as well. They did a complete CT scan of the prostate area, which they will use to develope an effective treatment plan for me specifically.

So, I am all set for step two of my radiation treatment. I am doing extremely well and happy with the course of treatment that we've chosen. I will check back in after the IMRT gets underway. :>)

David's e-mail address is: dlinn94@verizon.net.