Conflicted/Confused, any Guidance/Advice out there?

@batsam10
Your Gleason scores were same as mine. I was originally given a intermediate risk score based on the 3+4=7. However my Decipher test came back low risk and then my Mayo oncologist/radiologist lowered my risk to low risk and no need for hormone treatements.

Could of things: Do not be oververly concerned with side affects. In realtity the are usually minor and of little inconvenience. For some there is more of degree of side affects but most have minor. I had minor that did not need medications and were temporary.

Regarding your risk level. High suggest you have a Decipher test. This test uses the same biopsies taken to do the test and does not require additional biopsies. It is a genetic test and can give you and your provider a more definite diagnosis of risk level.

I would also asked for a PSMA and bone scan. These too will address any spread of cancer outside of prostrate which will great affect the type of treatment you get.

Did you provider set up Photon or Proton radiation treatments. Both have specific advantanges of reducing side affects with Proton being the latest method to reduce side affects and damage to healthy organs and tissues as it the radiation beam does not pass through body like Photon does. Proton also can use pencil beam which is a highly control beam to reduce side affects. It is also use with eye cancer and other cancers when trying to reduce damage to organs and tissues that surrond the cancer.

Bottom line: Do some research, asked opinons for others like MCC, AND get a second opinion on diagnosis and treatment options. AND regardless of who you use or treatments get the Decpipher test, PSMA, and bone scan.

Good luck and don't be afraid millions of us have gone through this will little side affects. Others will have them but that is life and no one is going to have the same outcomes. Then do what is best for you and your mental and physical health.

Well, you have to do something, right? Was your radiation going to be a Cyberknife 5 session tx or a prolonged 35-40 sessions at lower dose? Cyberknife with a gel spacer GREATLY reduces side effects and is shown to be as effective - or more so - than surgery with 10 yr outcomes being the SAME.
At your age I would avoid surgery if possible - your sex life will be greatly impacted if not over( as mine was )at age 64. I was a Gleason 4+3 unfavorable. I chose surgery because Cyberknife was still not PROVEN over the long term....now, it is. Best of luck!

Thank you for the response and information. If you don’t mind my asking what treatment did you chose? You mentioned no need for hormone therapy, so I’m assuming you chose radiation. Unfortunately, I’m doing the research now and just trusted what the Dr’s have said. The literature provided to me by the Radiation Oncologist sounded pretty bad for someone with baseline bowel issues. I hope you are doing well.

Thanks for sharing your story. And I’m sorry to hear what you are going through. I will be bringing the information you shared to my next appointment this week. Most everything I have read says both treatments can cause ED but the surgery is immediate. The only thing I’m thinking with surgery is it seems like you have a better shot of getting all the cancer out if it’s contained.

@batsam10
Don't hesitate to asked questions. I did not know about MCC until I had started my treatments and sure would have helped if had know about it.

I chose Proton Pencil Beam radiation. It was 30 rounds over 6 weeks. I chose that based on my Mayo PCP recommending proton radiation to me. When he was a medical student he did research at UFPTI and was thorougly familiar with both Photon (which Mayo Jacksonville only offers) and proton which UFPTI has been doing since 2006 and has the lates models and treatments using proton.

The use of Space/Oar moves the rectum away from prostrate and lessons radiation damage. I think to know what is biggest difference is that Photon raditation enters and leaves throughout body. SBRT can direct the xray away from organs but the radiation travels out the body. With Proton there is less radiation going in AND it stops at prostrate and does not proceed out through other organs and/or body.

What is now done to lesson damage and radiation damage to other organs and tissues is the Space/Oar and drinking water (it helps move the bladder away). But a certain amount will still cause some damage as the oncologist/radiologist will try to treat the entire prostrate and margins to ensure all is treated and something is not missed by the biopsies.

Pencil beam proton radiation is even more precise. They used this on me to stay away from my ICD/Pacemaker and the wires as much as possible. My device was monitored and I received not radiation damage to it.

The reason I did not have hormone treatment which was my original treatment with radiation was the Decipher test revealed I had a low risk of metassing not intermediate which a 3+4=7 indicates.

Other than some slight fatique later in treatment, some reduction in urine flow, I had no side affects. If you are considering surgery for a 3+4=7 you should get a second opinion. Many have the surgery with complications but tolerable. Many do have complications. What is best to know that even with surgery if some of the prostrate cancer was not contained to prostrate you will still have cancer growing elsewhere and your PSA will rise.

You can always asked a second opinion on diagnosis and treatment opinions for you specifically by asking Mayo Clinic or Cleveland Clinic to do a second opinion. It can be done electronically between the providers. I do think regardless you should have the Decipher test, along with PSMA, and bone scan. Those three tests will give a good look to make sure if cancer is contained to prostrate only.

I think you stated you were in Boston area. And you are right some outstanding medical providers there. But even though my original tests and consultation were done at Mayo I did a second opinion/consultation with UFPTI and chose the proton radiation ONLY because Mayo Jacksonville did not offer proton only Photon

I am 70 years old ( as of October 23) my PSA had gone from 4.24 to 6.62 in 6 months so my urologist ordered a Parametric MRI and a 4K score blood test, MRI showed a 12mm lesion on the right side mid gland and came back Pirads 4, the 4K score was the maximum at 95% of clinically significant cancer. Sure enough the MRI Fusion perineal biopsy at Mayo Phoenix show 9 of 23 cores cancer, with 6 at 70% 4+3=7 and 3 cores 40% 3+4= 7 and 14 cores benign. I had the PSMA PET which confirmed the tumor on the right, but no other spread outside the prostate. I then had the Decipher test and it came back low risk at 0.38. I looked into surgery and met the Mayo surgeon, who said at my age and weight ( 250 lbs) I was not a good candidate for surgery and he reiterated that it was major surgery with serious life changing side effects and possible major complications. After learning all the details of the surgery, there is no way I would even consider it. My prostate was 50.4 cc about the size of a lemon, they cut the whole thing out and to make up the missing 2+ inches of the urethra they pull the bladder neck down and the urethra up shortening your penis 1-1.5 inches, the cancer returns in about 20 - 30% of surgeries and you need further treatment like radiation or God forbid ADT and hormones. Radiation also has serious side effects and Erectile Dysfunction in 20-40% of cases, plus possible bowel problems. I then looked into Focal Therapy, talked with my Mayo Urologist yesterday, was really depressed that even the focal therapies like Hifu have side effects, ED in 20% of cases, possible rectal fistula, urine leaking into the bowel and you need surgery and have to wear a bag, also you have to have a Foley catheter for 1-2 weeks. I am looking into the Tulsa Pro which they do in Rochester , not in Phoenix. Considering my relatively low PSA at 6.62, Low Risk Decipher score of 0.38, tumor grade T1c and small volume tumor less than 1cc or 2% of prostate volume, I am considering Active Surveillance, at 70 my PCa may never metastasize in the next 10 years and I would more than likely die from some other cause. The ProtecT study in the UK shows no difference in mortality with Intermedate Risk patients over 15 years . 1/3 had surgery, 1/3 had radiation and 1/3 Active surveillance. Quality of life is much more important to me than quantity, and in my own personal opinion, if I had the choice to either wear diapers the rest of my life, have ED and possible bowel problems, or be dead, I would rather be dead. I am now leaning toward no treatment of any kind ever, just metobolic therapy and Ketogenic diet to starve the cancer cells of Glucose, I does extensive research on this watched Dr. Thomas Seyfried you tube videos, also Dr Ken Bary and many others. While I understand that many with PCa are always talking about treatments on this support group, I have yet to see someone with4+3=7 talk about no medical treatment. If I had 3+3 or 3+4 I would definitely not have treatment of any kind

Has your urologist mentioned a plant-based diet? Studies are beginning to show a slowing of prostate cancer progression in patients who adopt a whole-foods, plant-based diet. Small studies but intriguing and encouraging.

No mention of diet from any doctor, which is understandable, as they are programed to treat, their first recommendation was surgery or radiation as "Standard of Care" for a 4+3=7 Grade 3 prostate cancer.

I think any diet that eliminates sugar and keeps carbs under 20, will cut off the food supply for the cancer cells, which can only survive on Glucose, whereas the rest of your cells do just fine in Ketosis using only Ketones for energy. I have always loved to eat, especially sweets, donuts, candy, baked goods etc. and hence my weight at 250lbs. for the last 20 years, which has been a contributing factor to my PCa I have given all that up as if my life depended on it ( which it might) strict Ketogenic, meat fish, seafood, poultry eggs, cheese, and avocado, some nuts & berries in limited quantities, I quit alcohol 2 years ago, and I have to look at sugar the same way.
Thanks for your reply

I’m curious why your weight made you a non candidate for surgery? How tall are you?

5 ft 9 " also I am on 325 mg aspirin as I had a very minor stroke 7 years ago, the surgeon basically said at age 70 there is just more risk and harder to recover, especially from any major complications, infection, sepsis, blood clots etc, it is definitely major surgery and I know why they call it radical. The surgeons get first pick of the patients, and to keep their success rates high and serious side effects low, they chose the younger patients that are in excellent physical condition