Prostate cancer diagnosis and decisions

Posted by jrubicon @jrubicon, Dec 21, 2019

I finished radiation treatment for my prostate cancer in January, 2019. I lived with the cancer for about seven years (active surveillance) before the treatment, but the numbers started to change slightly from the biopsies and felt it best to treat the cancer. During that entire time, my PSA never exceeded 3.0. In reading several of the posts, it concerns me that many who say they've been diagnosed with prostate cancer sound almost panicky. Relax. Even though no one can say for sure how cancer will act, it's not an automatic death sentence. There are many causes for elevated PSAs, and a lump on your prostate may not be cancerous. My urologist said that if you're a male and you're 70 years old, you probably have prostate cancer whether you know it our not, and you will likely die from something else before you even know you have prostate cancer. So, be cool. Yes, it's not the best news you've heard this year, but almost always you have time to consider the choices, from active surveillance to surgery. Your Gleason score along with the percentage of biopsy cores with cancer will help you and your caregivers determine the best course of action. If your urologist won't take the time to sit down with you, and your spouse, and discuss the options, get another urologist. But, don't ask your caregivers to guarantee the success of any option. There are a lot of unknowns. High power MRIs, new blood tests, bone scans – all will help with your decision. But, remember, the decision is yours, along with your significant other. I read in some the posts that folks had trouble with the biopsies. They are not comfortable, and have some risks, but I found them tolerable. I had four of them with only local anesthesia, and survived.
My advice is to accept the diagnosis, confirm the diagnosis, look at the Gleason score, and the core percentages, and any other tests you may want, and then decide. Don't let the diagnosis rule your life. If you decide to use active surveillance, then do just that. Get on with your life and periodically have a PSA and perhaps a biopsy to check the numbers. Whatever you do, don't rush the decision. With the exception of very aggressive scores, there are lots of options. I had a new DNA (I believe) test done which measures aggressiveness. The urologist called and said that it came out pretty aggressive – like the 90 percentile. I asked him what that meant. He said that I had a 10% chance of dying of prostate cancer in the next ten years. I started to laugh. He asked me what I was laughing at. I told him I was 78 years old and that I had a 50% chance of dying from anything in the next ten years. However, that test did convince me to start radiation treatment. Have my decisions to wait, and finally have treatment, been correct. So far, but one never knows. You make the best decisions you can with the information you have, and then move on. If anyone has read this far, thanks. Good luck. Remember to live life to its fullest. Don't let a little glitch of prostate cancer keep you from enjoying life.

@jrubicon Thank you for your comprehensive post. Your experience is encouraging to me, as I begin radiation in a few weeks. I appreciate your positive perspective. 😊

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With new genomic testing to establish probability of metastasis or progression to higher level disease, it may be even easier to examine, in consultation with treating doctors, the feasibility of continuing active surveillance and avoiding, as far as possible, repeat biopsies and depending instead on biomarker and imaging based confirmation of non-progression.

Liked by jrubicon

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@vernonkent

@jrubicon Thank you for your comprehensive post. Your experience is encouraging to me, as I begin radiation in a few weeks. I appreciate your positive perspective. 😊

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Thanks. I wish you the best of success.

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Thank you for the great
article you posted. I really like your ending statement
That reads: Don't let a little glitch of prostate cancer keep you from enjoying life.

Liked by jrubicon

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@peekaafighter

With new genomic testing to establish probability of metastasis or progression to higher level disease, it may be even easier to examine, in consultation with treating doctors, the feasibility of continuing active surveillance and avoiding, as far as possible, repeat biopsies and depending instead on biomarker and imaging based confirmation of non-progression.

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Good to know. Anything accurate that will make decisions easier is great.

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wow thanks for that post i,m 57 yrs old and i had my prostate removed last october. the surgery went well, i begin radiation therapy starting this friday and after reading this post i,m not as as scared as i was before thank you again

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I'm happy what I said reduced your concerns a little. You are doing what is important – availing yourself of the best treatments. So, my thoughts are that those treatments then become a small part of your life, and the vast majority of your life is other than your cancer and the treatments. Don't think about your radiation until you are there, and don't think about it after each treatment. Every moment you're thinking about your disease and the treatment is precious time taken away from the more pleasant things in life. My best to you, and those with you on this journey.

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Is anyone taking Eligard injections as part of ADT harmone therapy? At one hospital this is preferred and at another place they are giving Lupron. These are two different brand names of the same base compound Leuprolide Acetate. I am scheduled to start on Lupron shots tomorrow. Just wanted to see anyone has a opinion as to which one is preferred?

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@sannira

Is anyone taking Eligard injections as part of ADT harmone therapy? At one hospital this is preferred and at another place they are giving Lupron. These are two different brand names of the same base compound Leuprolide Acetate. I am scheduled to start on Lupron shots tomorrow. Just wanted to see anyone has a opinion as to which one is preferred?

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@sannira, I'm tagging @flor @fmh1, as both have mentioned taking Eligard (leuprolide).
How are you doing on the Lupron shots?

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@colleenyoung

@sannira, I'm tagging @flor @fmh1, as both have mentioned taking Eligard (leuprolide).
How are you doing on the Lupron shots?

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Hi Colleen,
It has been close to 4 weeks since I got my first Lupron shot. So far so good except for the sex drive. I have completely lost it. The only other side effect is an occasional hot flash at night.
I also started Chemo 2 weeks ago. I had some serious throbbing pain all over my body for couple of days. Then I had headaches. Then only medication I took for these are Tylenol and/or Motrin.
Now I have been suffering from mouth sores for the past 4 days and it is terrible. I also lost my appetite and sense of taste. Due to loss of appetite, mouth sores and becoming hard to eat, I have lost 5 pounds.
Because of fatigue, headache mouth pain, I haven’t exercised or walked in a week. Just 10 days ago I ran 4 miles on the treadmill!
I am crushing all my food and trying to drink it and also started some protein shakes. I am planning to walk on the treadmill for at least 15 minutes today.

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@sannira

Hi Colleen,
It has been close to 4 weeks since I got my first Lupron shot. So far so good except for the sex drive. I have completely lost it. The only other side effect is an occasional hot flash at night.
I also started Chemo 2 weeks ago. I had some serious throbbing pain all over my body for couple of days. Then I had headaches. Then only medication I took for these are Tylenol and/or Motrin.
Now I have been suffering from mouth sores for the past 4 days and it is terrible. I also lost my appetite and sense of taste. Due to loss of appetite, mouth sores and becoming hard to eat, I have lost 5 pounds.
Because of fatigue, headache mouth pain, I haven’t exercised or walked in a week. Just 10 days ago I ran 4 miles on the treadmill!
I am crushing all my food and trying to drink it and also started some protein shakes. I am planning to walk on the treadmill for at least 15 minutes today.

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Sannira, I was recently treated at Mayo PHX for my prostate cancer, with Photon Radiation (38 sessions), after getting a 6-mo shot of Lupron. No chemo, and I have my first post PSA test coming out the end of next month. Felt, and feeling, good through it all. Continuing to exercise (treadmill, some weight machines) has certainly allowed me to sustain better thru it all, as well as have my energy.
My wife cared for her father the last two years for his AML cancer. He passed away last summer. While he didn't have chemo for PC, he did have chemo. During that, one particular time, he once got mouth sores, and like you stated, wasn't able to eat well—blending food, but really not having much of an appetite. Nothing they gave him was helping. In fact, after getting too many antibiotics, he actually developed C-Diff, but miraculously, he was able to overcome that within about 8-10 days. Since nothing was helping his mouth sores, tho, my wife came across a particular remdy that he was more than willing to try. For several days, he would swish about a tbsp or so of Olive Oil around and around in his mouth for about 20 minutes, a couple of times a day, BUT, then spit it out without swallowing (it was said you could also use coconut oil…he preferred the olive oil), The theory is that it can grab germs, bacteria, etc., along with leaving behind some healing properties in the process. On the third day, he was feeling good enough to eat some softer foods, and by the 4th-5th day, his sores were gone and he never had any more problems with them after that. He continued to do the oil-swishing about 1 time a week, just for better mouth health. (For info—you are to swish, rest it there, swish in and around your teeth/gums, rest it some more, etc. One doesn't have to swish constantly.)
You can do a search for Oil-swishing and determine if that might be something you would like to try. In both their opinions, it couldn't hurt….and it helped quicker than anything else.
I hope you feel better soon, whatever you do.

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@remoteman7, Thanks for the oil swishing tip. I’ll definitely give it a try. As you said, it shouldn’t hurt. These little sore buggers have dug in there and just don’t want to leave my mouth.
We mostly use olive oil for cooking, so we have a gallon can sitting around in the kitchen. Also, I soak up lot of that raw oil when we go to Italian restaurants and they serve olive oil in a bowl and variety of bread to dunk in.

By the way, after 5 more sessions of chemo, I am scheduled to start radiation. So I have a long way to go!

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