My Journey. Advice? Words of wisdom?

KSKID Member Posts: 2 Member
edited May 2023 in Prostate Cancer #1

I would like to begin by thanking everyone for providing such a wonderful resource of knowledge and encouragement. I have been reading the forum for hours. You are all a tribute to what a positive attitude and a will to overcome can and will accomplish.

A bit about my history. I just lost my father after an 8 year battle of stage 4 prostate cancer in January of this year. (2023) He was diagnosed after an accident at work that led to a compression fracture in his spine at the age of 58. He soon after his injury lost his ability to walk due to tumors that had wrapped around his spinal column. He had a PSA of 1200 at the time of diagnosis. Over the course of the next 8 years he received multiple rounds of radiation, chemotherapy, hormone therapry, chemo pills, ect ect. He was able to regain his ability to walk after multiple radiation treatments but was always like a baby deer on ice with very little energy.

We lost Dad in January of this year. It has been a very challenging and tough 8 years for not only Dad, but the entire family.

Throughout his journey he explimplified grace and strength. He always had a positive attitude regardless of his pain or situation and put others in front of himself on a daily basis. My father showed me what it was to be a man, and will forever be my hero.

On to my story, which I am still very upset, confused, and scared about. I am a 40 year old man in good health. I have been getting annual physicals for the past 8 years and having my PSA checked (at the objections of my GP as I was too young) due to a promise I made to my father after his initial diagnosis. 2 years ago I had a PSA of 3.81. My GP gave me a DRE and said there was nothing of note at the time. He was not a fan of a PSA of that level so we rechecked it 6 months later and had a psa of 3.37. He then recommended to check it annually along with the DRE exam at my annual physical.

In the year gap from this to current, life sort of got in the way. Helping dad, work, my own family, I neglected to make it to my annual physical. (Poor excuses.....I know. But I am only human after all)

I did make it to this year's annual physical. I am a bit over weight (stress eating ect). I have a weight loss plan in place with my GP. Other wise in very good health. I was also low on Vitamin D (which I have been very tired over the last several months) and am currently on 8 weeks of 50,000 (unsure of dosage) pills of vitamin D supplements once a week. This has helped greatly with my energy. I also had a PSA result of 7.71. With my family history this resulted in a direct referral to the urologist.

The urologist gave me a DRE exam and stated he felt nothing of note. He then scheduled a biopsy. The biopsy occurred on Friday and the results posted online today (Tuesday). Out of the 8 samples taken during the biopsy 6 were negative. 1 showed High grade prostatic intraepithelial neoplasia. (Which after a google search I believe is pre cancerous tissue.....please correct me if I am wrong) The last sample showed prostatic adenocarcinoma with a Gleason score of 3+3=6 and an ISUP score of 1/5 involving 5% of the total tissue volume.

I don't see the urologist again until Friday. My wife is shaken, I am holding strong for her but am worried myself. My plan is to still follow up with the urologist Friday, but I also plan on contacting my GP in the morning to try and get a referral to an oncologist as well asap. After the journey we had with Dad, I do not wish to have my family have to take the same journey with me. I am ready to kick whatever is coming square in the **** and get ahead of this.

If you have made it this far, thank you! I am just grasping, scared, unsure of what is next. I have not seen any experiences so far of men my age that have went through this. (I am sure there are, and I would love to hear your experience.) Along with anyone else willing to share!

Putting this all into writing is oddly therapeutic for me. Please, any encouragement, advice, experiences are greatly welcomed! Again, thank you all!!!


  • Rob.Ski
    Rob.Ski Member Posts: 155 Member

    As far as cancer diagnosis you have lowest grade in a small volume. Based on that info, you have plenty of time to research and find the best doctor you can. Talk to more than one. At this point, I'd be surprised if any doc recommended treatment other than AS. Can imagine this might be difficult after your dad's situation. You can get a second opinion on pathology. I've seen some recommend requesting your sample be sent to Dr. Epstein at John's Hopkins. I was 49 when diagnosed, did AS for 1.5 years then got RP. My side effects are minimal, just crossed one year mark undetectable. Welcome to the forum.

  • Josephg
    Josephg Member Posts: 408 Member

    Given your family history and current situation, I strongly recommend that find find and consult with a Medical Oncologist who specializes in prostate cancer (PCa). A Medical Oncologist has no predispositions to specific treatments options (or not), and will be the leader of your PCa team throughout your PCa journey going forward.

  • centralPA
    centralPA Member Posts: 301 Member
    edited May 2023 #4

    @KSKID , so sorry to hear about your father. He put up a real fight to the end.

    On your situation, agree with @Rob.Ski that you caught it early. You have lots and lots of time to educate yourself, get more data, contemplate a plan, and execute it. The 3+3=6 is the lowest possible grade, and you have really low volume. Do not rush into anything.

    One thing that actually makes me angry is that you had a biopsy without first having an MRI. It is definitely best practice to have a Multi-Parametric MRI (MP MRI) first to try and identify any obvious lesions that would warrant specific targeting. Otherwise it is a random shot in the dark. The biopsy damage interferes with an MRI afterward for a period of weeks to months too. In my case, my MRI identified a lesion, which was targeted during the biopsy. The targeted samples were the only positive ones. If I hadn't had the MRI first, I would think I was clean.

    Be patient, be steady. You have time, you found it early.

    I would switch Urologists. He should have ordered an MRI first. And only 8 samples?

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member


    Good advice from the survivors above. If it was me I would want to know where the cancer was detected, deep inside the Prostate or close to the edge. If its close to the edge I would be more serious in a treatment path sooner than later. If its buried deep inside you have time to monitor via AS. You could go several years at a “3” which would be the best. A Pet scan should give you a good picture of the cancer location for future reference. Good time now to get your course of action(if needed) planned with tests and scans. Weigh all the info and decide a short & long term game plan. Once you know what your dealing with, size,location, Gleason score I hope this will be less scary for you and your family.

    Dave 3+4

    KSKID Member Posts: 2 Member

    Thank you for the replies everyone! I was able to get back in to the the urologist today instead of Friday. He went over my results with me which were pretty much what everyone had stated so far. He does not believe I have any metastasis but has ordered a CT scan and a bone scan both to be done on May 9th for peace of mind. He is then going to refer me to 2 seperate Urologists for second opinions (both in much larger cities) as well as an oncologist. He stated that in his 30+ years of practice I might be the 3rd patient my age that he has ever had with prostate cancer. He also said that most folks aren't looking for it either at my age unless they have major issues.

    I will continue to update, and do my homework with multiple opinions from multiple specialists. Thank you all!