Newly diagnosed questions

You mentioned prostate size plays into RT? Can you elaborate on that? Prostate size was not enlarged at all .

If your prostate size is not enlarged I don't think you need to worry. RT turns prostates into a differing thing, so some rad onc procedures are not done when prostate is huge as it makes things worse. At least one less thing to worry if you don't have BPH.

That article is from 2009...the data must be from a long time before that. Unsure as to how useful that may be.

I did the SBRT 5 proton radiation treatment with a 120-gram prostate at Mayo Phoenix. So, I have a very large one and have had no side effects worth mentioning and I am 74.

Definitely would address your prostate cancer versus waiting. The alternative is potential metastasis , a life changing ordeal that will impact you for the rest of your life. I had two uncles with prostate cancer. One (early 60's) did not catch it early enough and eventually died of prostate cancer that had gotten into his bones. It was quite painful for him for the last several years. The second uncle (mid 80's) caught the prostate cancer early enough, but had quite a few other life limiting issues. He and his doctor decided to not address the prostate cancer because it was something that would not end his life, prior to his other issues. He died several years later from kidney failure.

I believe you are 62 and healthy outside of prostate cancer - A bit of inconvenience by addressing your cancer now will go a long way to improve your quality of life for the rest of your life.

Good luck,

Jim

@lorken258. What said you could not have an MRI if you have a pacemaker? Most likely you had an electrophysiologist put your pacemaker and wires in. If you did not I would recommend seeing one to get his/her opinions on MRIs.

I have an ICD/Pacemaker and had MRI with contrast and probe. This was done a Mayo Jacksonville. My electrophysioloigst at Mayo Clinic had already advised me I could have an MRI they just have to take some precautions and yes they do use a special MRI.

What they did with me was shut off my pacing prior to MRI and then turned it back on afterward. This was just a safeguard if interference happened. They did say if you are pace dependent they even monitor more closely. But you need to ask if you can have the MRI. You might have different issues that I did but where are you having your tests done. When I had my proton radiation at UFPTI they required weekly pacemaker test to ensure radiation was not causing any issues with my pacemaker. It did not. There physic (UFPTI) recommended pencil beam radiation treatment to keep radiation away from pacemaker or I would have had scatter beam.

My pacemaker wires are the problem as they were put in 2006. My (I have had 3) present pacemaker was put in in 2018 along with a new wire for 3rd lead. You can have a PET Scan and Bone Scan. These do not affect your ICD/Pacemaker as they are xray type test with contrast to show if cancer present.

Were you offered the Decipher test? If no asked about it. It is another precise test on genetic level and can give you a low, intermediate, or advanced cancer rating. The Decipher test took me out of recommending hormone treatments to not recommending them as was a low risk results. I could not have the hormone treatments anyway as I have heart failure caused by a virus that scarred my heart and caused electrical problems.

My MRI showed areas of concern which next step was biopsies using a method called MRI/Fusion. No it is not another MRI but they use the results and infused into a very detailed computer generated biopsy procedure. Those biopsies (20) confirmed prostrate cancer in 2-3 areas and different levels with highest 3+4. But radiation therapy which I had treats the entire prostrate as there could be areas that have cancer that biopsies and or MRI did not catch.

I am his wife… he had a birth defect which was only found out in his 50’s which resulted in replaceing his aorta valve. He now has a porcine valve, then total heart block and afib. Then got sepsis and had to do the entire surgery over with another pacemaker. His life depends on that pacemaker. He has been through so much but is very strong. Works out all the time. It got him through. Now this!. Just wanting to make the right decision with this. We are heartbroken and overwhelmed with this news. The dr is recommending radical prostectomy.

So sorry to hear this. What a lot to go through. Getting the news is overwhelming. Do you have any prostrate cancer support groups in your area? Do you live close to any of the Mayo locations?

I am not a doctor but you say he has a serious heart condition but his Dr. is recommending radical prostectomy? The oncologist/radiologist at Mayo Jacksonville and the oncologist/radiologist at UFPTI would not consider recommending surgery to me because of my heart condition.

I depend on my ICD/pacemaker also. I have a left bundle branch block and 3 areas in LV sending out PVCs. Although my heart will self pace it will go down sharply if I did not have the pacemaker especially when I take my medications. So pacemaker keeps it up and helps with pacing as I have tons of PVCs. The ICD part has saved my life about a dozen times. Over the years I have had one (since 2006) it has gone off about 12 times. Without it I would not be here.
Mayo's Pace Clinic and my electrophysiolgist are outstanding and we fine tune and add medications to address issues. I was doing Sprint Triathlons prior to my radiation treatments and have been training to do them again. I have my first one this year in November. I have been an exerciser all my life. It is why my cardiologist say I do so well even with heart failure.

I would recommend getting second and third opinions. I did and many others using Mayo Clinic Connect have commented they also have done this.

His heart was perfectly fine had it not been for the birth defect if his aorta valve. He has a porcine valve now. He too was doing savage races and was big into crossfit. He did very Well with the surgeries because of that. His urologist did say he would have to get cardiac clearance but being robotic didn’t feel it would be an issue. We are about 4 hours from Mayo Clinic in Florida. He is very much “wanting to get it out” as just the thought of it being there scares him a lot. It’s all still so new. I did request appointment with a radiologist oncologist to have him hear other choices.

lorkem258 Just let him know he is not alone in the way he feels. Mayo Clinic Connect (MCC) is an excellent source of information and to hear from others. Another individual on MCC gave me web sites for John Hopkins information. It was excellent. I had just about gone on every major source of medical information researching this subject. However had not seen the John Hopkins information about PSA testing and levels.

Are you 4 hours from Mayo Clinic in Jacksonville from north or south? If you are north then have you considered UFPTI? Even if you don't want to consider UFPTI you can asked for a information packet from them. They will fed ex to you. It has two excellent books (that everyone should read if you have had or have prostrate cancer), complete information on proton radiation, research done on prostrate cancer and treatments (all types). It is lot of information. The books alone were great sources of information and the individual stories of men who have had prostrate cancer and the treatments they got.

You can send them his medical records (they will handle this just have to sign forms) and they will review your case to see if you are a candidate for UFPTI and then if yes set you up for a consultation if you want to proceed with them.

You could also then do same for Mayo Clinic Jacksonville. They do not have proton radiation but an excellent radiology/oncology department and photon radiation treatment program along with surgery.

I think I read his Gleason score was 7 (3+4). That is not high but intermediate. I would asked for a Decipher test. The Decipher test is a genetic test of the cancer and rating. Most radiologist/oncologist will also want to do PET scans and bone scans.

How old is your husband now? It sounds like your urologist was recommending robotic surgery is that correct? Again I want to be careful here and not imply I have medical expertise of what to do but I would definitely get second opinions.

Did the urologist tell him that almost all prostrate cancers are very slow growing. Your husband should know this. It is very different type cancer than tumor types like breast cancer. My urologist told me I would die from something else before my prostrate cancer killed me even if I did not get treatments. He was not recommending not getting it treated but the facts about prostrate cancer and survival rates especially when cancer is initially found confined to prostrate.

I was not give option for surgery because of my heart condition and age. I would have not chosen it versus radiation anyway. I wanted to be able to keep exercising and get back to my Sprint Triathlons as soon as I could. My exercise routine (swim, bike, jog/walk) was and is important to me not only physically but mentally.

I was able to do my exercise routine throughout my treatments with exception of bike riding (don't want you to bike). Yes did get a little fatigued, and had to go to bathroom more often, but worked through it. I was told, and I agree, your physical fitness before, during and after treatments goes a long way to success.