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ukpete profile image

Hi All, well after a routine visit to the doctors finding my PSA level was high, he sent me for a colonoscopy & MRI scan, the scan showed up some abnormalities and was sent for a biopsy, the results of that showed 10/18 had cancer, I was given a grade 3, and Gleason score of 7(4+3), last week I went for a bone scan and Im awaiting the results of that suppose then we can work out a plan of action, Its been a whirlwind experience so far hardly had time to let it sink in, Im still working and to be honest I feel absolutely fine, no signs at all, how can this be? if I hadnt seen my doctor when I did non of this would of been found, scary stuff indeed, well its great to read some of the comments on here and the show of solidarity and support that really reassures me, looks like Ive got a fight on my hands, one day at a time,

all the best, Pete

25 Replies

Welcome to the club.

It hardly ever has symptoms in early stages. My diagnosis (11 years ago) drove me straight into psychotherapy to deal with the anxiety. It helped a lot - and I learned how to practice Mindfulness, which I still practice. It keeps me centered in the present moment (the safest place to be).

You may find this useful:

nccn.org/patients/guideline...

If you are not metastatic, you have lots of curative treatment options that we can discuss when your bone scan results come in.

One day at a time is the best way to live. I found it really helped while I was absorbing the shock of a cancer diagnosis and working out my response to it. Thankfully I took my time to consider the options open to me, the pro’s and cons of each of the options as explained by the urologist and radiation oncologist.

I had to think of the possible side effects of treatment and which I could live with / without. I found it wasn’t the end of my life, just the end of the life that I assumed that I would have; and I did need to grieve that.

I also had to embrace the new present and possible future that treatment would bring. I wasn’t going to die anytime soon from prostate cancer and as there’s so few busses in rural Ireland, I wasn’t going to be run over either!

I still have a future, you do too and you can live it one day at a time. Once all of your scan results are in, you’ll receive the information from your doctors to help you decide your immediate future. If you don’t, ask them; ask them all the questions that you have (I wrote them down so that I wouldn’t forget). Also there are very knowledgeable people here who can and will help you increase your knowledge and understanding.

The decisions are yours though, to make with your doctors.

Hugh

westof profile image
westof in reply to Aodh

Brilliantly stated!

Take it a day at a time.

Study, explore and trust in the collective brainpower of our forum.

Find the best doc's and most of all, maintain a positive attitude!

"Your attitude will serve you" (courtesy of Lulu 700, 3 years ago😉)

Best

The good news is that it was discovered and thus, can likely be treated. The gammut of emotions is perfectly normal.

I just had surgery last Thursday and recovery is going well. Just got pathology results. I was 4+3, but margins are all negative which is great news.

You can see my journey blog here which I will further update soon.

sway.office.com/l5UFhSqy6Jb...

I have stood in your shoes myself. It gets better and the more you learn about your own disease the more you will know what your up against. It does get better IMO and I am almost 2 years into it. Others here have been ar it much longer.

ukpete profile image
ukpete in reply to treedown

I was only diagnosed a week ago, I'm trying to come to terms with it , having never known anything about prostate cancer.I seem to be bombarded with PSA levels, Gleason scores, cancer grades ect also some advice is to take time over what ever treatment or surgery to have seems a bit daunting, Im an engineer how will I know what to choose? well I suppose the next step for me is when I get the bone scan results back and a talk with my consultant. Im still at work although my boss has told me not to worry about time off and to just get sorted, my family are obviously upset and I can see it in their faces but I have gone into overdrive trying to act as normal as possible, It doesnt seem right that I have this and yet Im just living a normal life, I will keep in touch , all these coments have not only helped me but have given me some insight of what to expect, Pete x

1Ubspaine profile image
1Ubspaine in reply to ukpete

My diagnosis was almost identical to yours. I vividly remember the news and the ensuing confusion and shock.As an engineer, your analytical skills will serve you well through this journey.

It seems you are one test result away from beginning to decide upon treatment.

I am 64 and was told I was a candidate for both radiation or surgery, that it was a personal decision.

I launched my knowledge quest and this site was a big value add in that process.

You will need to have discussions with both a urologist and a Radiation Oncologist to get a full objective education.

Urologist get paid to cut, RO get paid to radiate.

I just finished my 5 radiation treatments and will complete my hormone treatments over a 9 month stretch.

My outlook is very positive and I am blessed that my cancer had not spread like many on this site.

Yes, some side effects, but as you, I continue to work and missed very little days at the office through my journey.

ukpete profile image
ukpete in reply to 1Ubspaine

certainly sounds very similar to me, although Im a lot younger than you, 62. suppose I will be posting on here in the future so keep in touch x

Jordache profile image
Jordache in reply to ukpete

I was 53 with Gleason 4+3 and very small amount of 4+4. Do your homework and make a decision that best suits you. For me I chose brachytherapy and 5 ext radiation treatments. I also am doing 18 months of adt which is not the end all. Dr says it’s early and shooting for a cure. Get hold of the mental part of acceptance and then have a plan of action.

treedown profile image
treedown in reply to ukpete

You have a lot going on and I understand where your at. Everything you mention above I went through as well. Its easy for me to give advice because its all hindsight for me. You can't even think about what to do for treatment until all your tests are in so no point in worrying about that decision now. Others want to help you and you may get platitudes but they will never know. That too will evolve. Take any prayers offered IMO. I didn't find this forum until I was half way through radiation treatments. I wish I had but it still would have taken time for it to settle in and wrap.my head around what the future holds. Then once things start it will come down to how you respond to whatever treatment your offered, which again won't happen until all of your tests are in. I can tell you my life changed very little from before dx to now. I still work, I exercise harder than before dx. I don't feel guilty about taking time for me mentally and physically which has become very important in dealing with the treatments and their side effects. I explored everything, radical remission, yoga, meditation, guided imagery, acupuncture, breathing, the right food to eat.. Mostly I ride my bike and it gave and gives me time to think. Time is what you need and in time you will have a better handle on what "you" are up against. This is your disease and despite it being called PC it effects us all differently as does the treatment. This forum is my cancer support group, my family and friends are my life support group, each serves an important role in my life the other can't.

I was in the same situation in January, same Gleason score as well. It is both scary and confusing with so many names, acronyms etc.

One thing I would recommend is that you have a PSMA PET scan as this is the best method to see properly if your PC has spread. Mine has, into various bones, but not organs, and this will define how it is treated. I am on Aberaterone and my PSA score has gone down from 10 to >0.5, so seems to at least be stopping any further growth.

Good luck

Stephen

Make sure to check out the Prostate Cancer Foundation's website (PCF.org) and get a copy of their Prostate Cancer patient guide; an excellent resource guide.

When facing my diagnosis, I found a support group. It has been a bulwark for me and a source of ideas and of knowledge about PCa.

Sorry to be welcoming you to the club but take heart, you have lots of company. Google famous men with Prostate cancer and you will see lots of names you will recognize.. all of them still contributing to society.

great advice on here..... just remember to get 2nd and 3rd opinions on every diagonsis... good luck.....although i am confused on why a colonoscopy ????

ukpete profile image
ukpete in reply to aceace12

I originsally went to my doctors with bleeding hemeroids , and thats how it all started

aceace12 profile image
aceace12 in reply to ukpete

usually thats how it all started with us.... good thing they caught ....

Greetings ukpete, Your dx is almost identical to mine. I was dx in May of last year with 11/12; gl 4+3; N0M0. Like you, I had no symptoms and found it difficult to grasp the severity of my dx and challenging to sort through possible treatments and their side effects. Your emotional feelings are normal. As you learn more about the disease, possible treatments, and how to deal with the side effects many of those fears will dissipate.I echo the advise of 1Ubspaine; be sure to meet with more than one specialist before making a treatment decision. Specialists are just that, specialist. Your URO will want to cut. Your RO will want to burn because that is what they do best.

I chose radiation over surgery because it is less invasive and the permanent SE are less devastating. Take note of how many men on this forum who have had RT have had a recurrence. I suppose that those who have not had recurrence are not hanging around this forum anymore.

I began ADT on 09/15/20. I had EBRT in 01/21; 20 fractions of 300gy to the prostate. My PSA dropped from a high of 33 prior to treatment to its current level of .1. I have not yet reached nadir. I will be on Lupron until 09/22. The side effects of ADT are manageable. I sleep with a fan blowing across me every night. Radiation has rendered my prostate dysfunctional, (dry orgasm) but I have the hope of a cure.

This forum is absolutely the best place for accurate information for dealing with your disease. These men live with this beast every day. They provide professional advice as well as emotional support. God bless you in your journey!

Correction: "Take note of how many men on this forum who have had RT (I meant to say "RP") have had a recurrence".

My husband did not have any symptoms either. His new doctor sent him to get a blood workup done and it showed a 4.7 PSA. From that he was sent to a Urologist who did a digital exam. That did not show anything remarkable except for a slightly large prostate which is common in a 64 yr old. But the Urologist ordered another PSA and that was 5.2. So that led to the biopsy. Biopsy showed 3 out of 12 cores with cancer and one of them labeled a Gleason 9. He had his prostate removed on July 28 and he is doing really well. The pathology report of the prostate downgraded his cancer to a Gleason 7 and it was only in 10% of the gland, clear margins and not in any of the 14 lymph nodes. We consider ourselves incredibly lucky to have caught it so early. Please send your biopsy slides to John Hopkins for a second opinion. I am sure my husband would have still opted to have it removed but it would have been a lot less stressful without the Gleason 9 hanging over his head. Do your research and interview surgeons or radiation specialists to find the best one for you. I found Dr. Corcoran of NYU Langone by word of mouth and then I looked him up. He has done over 1000 Da Vinci surgeries with good outcomes. Dr. Corcoran does a bladder lift at the same time as the removal that helps with continence. I wanted a hospital that had a high volume cancer center. So far, 5 days out from the catheter removal, my husband is dry at night and only leaks a little during the day. That is also getting better every day.

You will be Fine! Best of luck to you!

Hi Pete

Assume from your name that you are living in UK (i.e. England and Wales)? Very different scenario and choices to those in USA. I will write assuming that you are in UK:-

You are quite correct in realising that you have to research and decide upon the best course of action for yourself. The quality of knowledge, care and treatment varies considerably - but just because you are in UK and therefore probably under the care of NHS (unless you have private healthcare), don't forget that under NHS You have the right of choice regarding where you are seen, investigated, treated etc. Don't just settle for the nearest and 'handy' hospital.

Our family story: my father in law died of (not with) advanced prostate cancer because the Consultant failed to properly investigate or recognise the severity of his cancer until it was too late to treat. My husband later developed prostate cancer, but we monitored, investigated and arranged treatment for ourselves. Again, the Consultant 'Specialists' refused to recognise or acknowledge both his PSA velocity and familial history (his father, uncle and grandfather had all died of prostate cancer). My husband was refused investigations under the NHS and told to "wait and see", check PSA in 1 year. We didn't, and arranged MRI scan, then biopsy then surgery - but 300-400 miles away in the south of England. Fully successful, and now 8 years later, we are so grateful that we did.

Have you contacted Prostate Cancer UK charity? They have an excellent telephone helpline with fully qualified specialists. They are able to offer individual advice; in addition to lots of information on their website.

Here, on this Health Unlocked forum, TA (Tall Allen) is the font of all knowledge, research and information. He can direct you to relevant studies, research, etc. Do look out for him.

Apologies for lengthy reply, but basically arm yourself with reading and knowledge before seeing your specialist and ask them plenty of questions - and don't be afraid to make valid demands.

Wish you good luck and all best wishes.

Hi Pete, I'm 58 from Las Vegas and was originally diagnosed with Stage IV prostate cancer in March 2021. I was a 6/12, Grade 5, Gleason 10. My PSA was 12.6. I was sent to a Medical Oncologist. Bone scans and PET scans revealed no noticeable spread although I was told there was a 93% chance of a micro-spread as these imaging techniques cannot pick up a tumor smaller than 2 mm. My biopsy did reveal that perineural invasion was identified meaning it got into the nerves near my penis. My diagnosis was lowered to Stage IIIC. My oncologist told me I had a tiger by the tail and wanted me to immediately start treatment if I wanted to live. He suggested 24 months of hormone therapy (temporary chemical castration - no sex for 2 years) followed by radical prostatectomy including the affected nerves, followed by unknown doses of radiation. I was to expect that my life would never be the same, assuming I survived. Since I was 99 lbs. overweight and had pretty high BP I did not think I could survive the extra weight caused by the hormone therapy as the Doc told me many people gain 50+ lbs. I was told I could grow breasts and be irritable to live with. After the surgery I could expect incontinence and impotence. To gain an erection, I most likely would need to inject myself in the base of the penis each time. My jaw dropped and my wife, sitting next to me, was equally shocked. We decided to seek a second opinion.

A week late I was at CTCA in Goodyear, AZ, one of the top cancer centers in America. The urologist there was top notch. Since there was no firm evidence of metastasis I met with a Radiological Oncologist instead of a medical one. Together they felt they could skip the hormone therapy and do brachytherapy first, then remove the prostate, then hit me with doses of broad beam radiation to clean up any micro spread. The whole process would last 2 or more years. Sadly, the other side effects would be the same. Being a former nuclear engineer, I was trained to avoid radiation exposure, so I wasn't keen on this treatment plan either. But, it sounded better, and quicker, than the option I was given in Vegas.

Since I had three weeks before they could begin, I spent a ton of time on-line looking for alternative treatments. I read that they are doing amazing things in Germany and Mexico. Fortunately I purchased cancer insurance six years ago which paid me $60K USD. The best cancer center I could find offering alternative treatments with a proven track record was located in Cancun, MX. My wife and I had a phone interview with their intake doctor and he was very re-assuring that they could help. He boasted a 96% 5-year survival rate for stage IV PC for those who have not already done conventional therapies. I went to Cancun Apr 6-28 for a 3-week outpatient "boot camp." We stayed at an amazing all inclusive resort on the beach right across the street from the clinic. The treatments were powerful, non-toxic, painless and easily tolerated. I was back on the beach by 2 PM most days. They spent a great deal of time educating us about why we got cancer and how to prevent it from coming back. I was sent home to continue my therapy. After 3.5 months of home treatments, I'm back and about to walk over to get the results of my tests.

I feel amazing. My sensitivity down there is back to normal. Other chronic conditions I had like insulin resistance and fatty liver have been resolved by my new low carb, healthy fat diet. I have tremendous energy and I'm never hungry and I eat just two meals a day. I lost 49 lbs. since March 19, with 50 to go. I still have my prostate. My immune system has been trained to see and fight the cancer and I expect a great result within the hour. Total cost including the resort for my wife and I was $42.6K USD. It was well worth it for me.

ukpete profile image
ukpete in reply to

Hi, seems you have certainley had a rough time, At the moment I am still waiting for my bone scan and then will be with my consultant, The hospital I am attending is a very good hospital for treating cancer patients, all the treatment will be funded by our NHS, up to now they have been first class, I actually feel 100% no pains, no blood loss, not getting up in the night for a wee, and Im still at work, I actually think they have got my records mixed up,(I wish) I just wish I could get my results back, please keep intouch, no doubt I will be posting on here as my journey unfolds, take care , Pete xxx

in reply to ukpete

Hey Pete. I'm not having a hard time since I said NO to the USA doctors. My experience in Mexico has been outstanding. My tumor has already shrunk and I should be cancer free in a few more months. 6 months of non-toxic, painless treatments and I get to keep my prostate vs. the horror show they had planned for me at home? No brainer. Best wishes for your prognosis and whichever treatments you opt to do.

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