Biopsies: I am nine years out since... - Active Surveillan...

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Biopsies

AS2010 profile image
9 Replies

I am nine years out since diagnosis of a very low-risk Gleason 6 tumor. It was found in a single core in 2010. The cancer hasn't been seen again in four other biopsies and two MRIs.

My goal in going on AS was to avoid surgery and radiation which the majority of low-risk men underwent nine years ago. That has changed. Maybe 50% of Gleason 6 patients go on AS now compared with 6% then. A huge jump in a short time. But compare that to Sweden, where 96% of our peers go on AS. We have a long way to go.

My goal now is to avoid or minimize biopsies, which after all are medical procedures with risks, even for sepsis. Likewise, I want to minimize exposure to gadolinium, the MRI contrast agent. Some doctors (and malpractice lawyers) are raising concerns about the heavy metal being deposited in our bones, bones, kidneys, etc.

It's been 2 1/2 years since my last biopsy. I fully expected my urologist to recommend another biopsy and MRI. I girded myself to use an alternative to a biopsy, such as an MRI without a contrast agent or a promising new approach, a high-rez ultrasound originally used in research on rodents.

I was prepared to use the US at Cleveland Clinic. But I was astonished when when my urologist he said he didn't think a biopsy or MRI were needed now. Good for now, but maybe a future option.

My urologist said I barely have cancer.

I

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AS2010
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Darryl profile image
DarrylPartner

Sounds like you are in a good "place." What is your age, and your PSA history?

AS2010 profile image
AS2010 in reply toDarryl

I am 71. I got on the biopsy treadmill with a PSA of 3.95. Over time, it went as high as almost nine and then as low as at 4.8. I switched to the Prostate Health Index three years ago. Using that system, I recently had a 28, which prompted my doctor to say I barely had cancer. My first AS urologist told me I am the poster child for AS--and recently said that almost 10 years later that I still am. I realize that could turn on a dime. I think that metformin has helped along with an on-again, off-again keto diet--I was diagnosed with type 2 diabetes two years ago.

kevinf profile image
kevinf

Thank you for this. My story is almost identical except I'm only into my second year of AS. It's great to see that there really can be light at the end of the tunnel and that the sword of Damocles doesn't have to fall eventually.

EdinBmore profile image
EdinBmore

Great news for you! Good luck to you!!

I, too, was in a AS program - Hopkins - for 7 years. I had the biopsies, MRIs, PSAs, genetic testing (the results of which were quite favorable at the time). I was followed by the director of urology, a full professor, and leader in his field. I hoped that I could continue in AS until I was too old to have any treatment at all; as in, the rest of my life. Alas, I was not as lucky as you.

PSA climbed to 22, Gleason increased from 3+3 to 3+4 in one core. Prostate Health Index sky rocketed. In July 2018, it was time for "the talk" about treatment options. I chose a local hospital and opted for a fairly recently developed approach that included ADT, IMRT, and brachytherapy. The ADT has been the worst part of the trifecta; the depression, grief and despair have been overwhelming at times (not to mention the other side effects; hormone treatment is powerful stuff. Consider cautiously if it's recommended for you.) The side effects of the IMRT and brachy have been minimal thus far. I'm lucky.

My point? Continue to monitor closely cuz shit happens.

EdinBaltimore

AS2010 profile image
AS2010 in reply toEdinBmore

Thanks. Things can change, This has been a roller-coaster ride, not a merry-go-round.

jackcop profile image
jackcop

I'm one year out of initial diagnosis (February 27, 2018). Doc said if I had to have cancer this had the best prognosis. But it is still cancer and like EdinBmore, I'm anxious re: the outcome. Apparently, his was treatment for an increase from 3+3 to 3+4 in one core. That's still good news but I remain anxious when I think hard about it.

My dentist at age 47 had 3+3 but he chose surgery and now 10 years later, he has occasional small leakage and needs Viagra or such for ED. He recommends surgery. Makes sense for him at age 47, I'm age 68: 69 next month (March 2019) so, I'm waiting. And waiting is the hardest thing I've done.

123-Anoka profile image
123-Anoka

To all the authors above this post .... your stories elevate me with hope, while at the same time, inspiring some logical caution. I truly appreciate your perspectives and your participation in this group. Thank You!

aceace12 profile image
aceace12

That great and amazing . Astonishing that they diagnosed it then it disappeared. Curious if you changed your eating habits to make cancer not found or maybe a bad diagnosis..

AS2010 profile image
AS2010

I didn't change my eating habits until years later. I had discussed my case with the chief medical officer of the American Cancer Society. He suggested the same thing as you--that I got someone else's diagnosis. No way to prove it. However, I was in a study of pharmacogenomics in which they discovered my blood test was indeed switched. The fact is our bodies produce cancer cells all the time and destroy them. I feel I had bad luck and underwent a biopsy on the wrong day. If I took it another time I might not have been diagnosed and pushed to have a radical,

As it is, only a tiny cancer was seen in a single core, But once you are diagnosed with cancer, even a tiny one like mine that went away, you are labeled as a cancer patient. One consequence was I lost prime rates for life insurance.

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