Just been diagnosed with prostrate cancer

Cancer
1

I am 50 yr old reasonably fit and healthy or at least I thought I was.

My blood test revealed PSA level @ 6.2 which later reduced to 5.8 on my second test , I was sent for a biopsy where the doc told me my prostrate felt enlarged but didn't feel abnormal , unfortunately my results later revealed I have localised prostrate cancer . When the doctor revealed the news yesterday I was in total shock but now realise I am one of the lucky ones as my cancer appears to be none aggressive type, only one of the twelve biopsy samples revealed a small volume of cancer with a Gleason score of 6 which apparently is low.

My worry now is to decide to what to do next regarding treatment.

Do I sit and watch and wait or would anyone out there with a similar story advise otherwise., I am thinking about Prostate Seed Brachytherapy treatment but don't know a lot about the risks after or what the success rate is. At present, besides going to the loo more often my life hasn't been too affected.

Can anyone advise what to do

I have a choice to watch and wait or have radiotherapy ,, my dilemma is what if it spreads . Advice would be greatly appreciated

Yours worried S,,

2

Back in 2007 I had a PSA around 5 and a Gleason of 6 with 3 of - 12 positive cores. The urologist who did the biopsy said I needed to have a prostatectomy right away. My wife at the time, who was a physician took me to UCSF for a second opinion. That well-known doctor told me that watchful waiting would be OK. I had a PSA quarterly and an ultrasound twice a year. Meanwhile went on a mostly vegan macrobiotic diet. So far no surgery, no radiation, no chemo for 9years. I am having some problems with BPH at this point and taking Rapaflo and saw palmetto.

Good luck and let me know if you need more information

3

Hello. My other half was advised on active surveillance. But for a number of reasons decided to have brachy. He has suffered such bad side effects. Which is apparently quite rare. But he really wishes he'd stayed on surveillance instead. Good luck with your choice.

4

After routine 'Well Man' medical, I was evetually biopsied and diagnosed with similar and have been happy to wait. It's now about 8 years that I have been monitored without need for treatment. If you can hold the anxiety, there's no need to rush into treatment until you know whether you really are at risk of the cancer spreading and causing you harm or even death! Why were you tested - routine check or showing symptoms? Chances are you will die with the cancer but not from it - at least that seems more likely for me. I'm 66

5

What was your PSA when you were diagnosed?

6

Good to read your experience knowing that active surveillance has worked for you makes me think it may be worth waiting , I guess I have to learn how to cope with the anxiety.

I went to the doc two years ago with increased night time urinating, he took a urine sample but never heard anything back so like most men I ignored it until recently I noticed that I went to the loo four times in the night. I went back to the docs and seen a different doc who investigated it further. and now find out I have cancer.

Guess I am one of the lucky ones as it low risk at present but thank you for your advice it really helps.

7

Prior to your psa of 6.2, what was the psa before that? I'm curious because my psa jumped dramatically in 1 year.

8

AFpj,

My PSA reading same as yours, however my gleason score much higher. 4+3=7

My urologist sent my biopsy remains to Prolaris for Genetic testing. (BTY you can google Prolaris if you are not familiar with them) The test came back saying my cancer was in non aggressive range. So, I chose active surivillance. My suggestion to you would not rush into treatmen and try active survillance, I think you are a good canidate, because of your gleason score. Rushing into treatment in my opinion would  not be a good option. A wait and watch would be beneficial.

The Prolaris test also gave me a mortality rate of of chances of dying in 10 years, of only 3%. G'Luck with what ver avenus you take.

9

Sorry about your diagnosis. I am in the same boat. Also Receantly diagnosed with prostate Ca Gleason 7 (4+3). Had my biopsy in August. Incidentally diagnosed with prostate Ca after I had TURP on June 1st. This one was Gleason 6 (3+3). Still did not decide which treatment would be best for me and with least SE. Worried about incontinence and impotence. Found couple of research online where it says that radical prostatectomy after TURP puts patients into 3x higher incontinence and impotence rate. Being only 51, it worries me a lot.

Meeting RO next Thursday and after that will make my decision about modality of treatment.

10

Sorry to hear you are part of the group. At 50 years old and non aggressive prostate cancer, your options are many. You do have to stay on top of it though. I was diagnosed last October with non aggressive prostate cancer. 2 out of 12 samples biopsied indicated low volume cancer cells. My PSA was 5.2 with no other problems with urinating or anything at all. The higher PSA appeared during my annual physical. I took antibiotics in the beginning because my urologist wanted to make sure there was no infection. After the antibiotics, my PSA went down a little, but not enough. He told me that I had many options including the active survailance. Active Survailance would require periodic monitoring of PSA and other biopsies. One biopsy was enough for me. I didn't like that at all. Since my gleason score was low at 6, the urologist and the oncologist said that it was curable... I considered the wait and see - for only a short time. I just couldn't wait it out. I know there are many guys who can wait with no problem, but knowing that I could be cured of the cancer sounded better than waiting it out and knowing that I had prostate cancer and may have to deal with it eventually. And then I would be older, and may have other heath issues to deal with too.. So I looked at many websites - starting with the Prostate Cancer Treatment Research website. I looked at the many  treatment options and chose the low dose radiation Brachytherapy. It has been 6 months since I had the treatment - I had it done last February. I went for my 6 month follow up a couple of weeks ago, and I am happy to say my PSA is now 0.15. Side effects for me were minimal. All treatments seem to have some side effects. It seemed that the Brachytherapy had few. Since the radiation is low dose, it posses less of a threat to the surrounding tissues like the bladder and colon. Do some research. You are young enough and low risk enough that you have time to consider your options - even the active survailance if you choose that. If you do choose to have treatment, just make sure your doctor has performed that treatment many times successfully. I wish you the best. Charles

11

Sorry to hear he had side effects it really makes me think I am probably best to watch and wait.

Many Thanks for the advice

12

My PSA was 6.2 I had another test a week later which was 5.8

13

Thank you so much for the advice

I am going to weigh up all the options but guess I am leaning towards active survelance as long as I can learn to live with anxiety .

It's all pretty raw at the moment but your advice has definitely helped.

14

It seems most people including the medics are saying watch and wait .I feel more confident after being on this forum knowing that waiting has worked for so many who have been diagnosed low risk.

I think if I did decide to have treatment in the future I would go for Prostate Seed Brachytherapy but I am like you it seems there is a gamble with every option, hope it goes well let me know how you get on Thursday .

15

First of all, I'm very sorry for your diagnosis. We are only 7 years apart and I had a similar experience. I am also a very healthy male other than prostate cancer. I will apologize for this lengthy reply but I think more information is better than less when it comes to issues of cancer. If you are like me, you will go through times of mourning the loss of your health. But there are a lot of options for you, based on the early stage you have described. And Because I have just gone through the journey you have begun, I can tell you, there is great hope for a recovery from this disease with little to possibly no side effects.

I don't want to ever minimize the gravity of being diagnosed with cancer but I truly believe that in my case, because of the treatment I chose, (and potentially in your case too) cancer can almost be a non-issue. Yep, I have that much optimism for early diagnosed cases.

So, based on my experience here are my suggestions. First, based on the information you provided, you have time to think this through. Don't make any quick decisions. Only decide on a course of action AFTER you have done your homework. Give yourself several months (maybe even longer) before you make a final decision. (It was 5 months before I decided on my course of action.)

Personally, I don't think you have all the information you need yet. I would suggest requesting (insisting on) a 3T MRI to determine if there are any other areas of concern. (Your biopsy was random. This means the urologist may or may not have found all the areas of cancer.). I don't mean to be a Debbie Downer, but we are talking about your prostate, your quality of life, and your life period! My first urologist misdiagnosed my symptoms and said I don't have cancer. His recommendation was to do the greenlight laser and in his words, I will be Peeing like a 16-year-old again. It was only through my own due diligence and seeking a second opinion that (sadly) it was discovered I actually did have cancer. QUESTION EVERYTHING!!!

Next, if I were you, I would ask where the cancer is located. Even though it's a low-grade and contained in the prostate, you need to know if it is located near the transitional zone, seminal vesicles, or other areas with a higher probability to spread. If it's not, then active surveillance is a very good temporary choice for you and I would give it strong consideration.

I'm personally not a big fan of active surveillance because the more the cancer grows, the less options you will have down the road. Also you will most likely have to have PSA tests every 3-6 months and biopsies probably every 18 months. My personal opinion is biopsies (ripping out cores of flesh) are not healthy for the prostate and potentially increases the chances of cancer spreading through releasing cancer cells and needle tracking. Although there are no (known) studies to document this. (They will never document this for obvious reasons.) Urologist actually like active surveillance because they continue to make money on their patients doing multiple PSA tests and biopsies and still eventually end up performing surgery. So for them, it's like milking a cow until the big payout. (There was a well-known urologist who was on TV and admitted this). (However, that doesn't mean AS is a bad choice.)

Two great advantages of active surveillance iare it will let you live a normal life sexually and from a urinary perspective and it will let you delay taking any "more aggressive/invasive" type action. This is a huge benefit as more and newer options to treat cancer are becoming available with much less to no severe side effects that are associated with radical prostatectomy, radiation, and some of the other options that are out there.

Just know that each of the physicians you talk with will most likely recommend the procedure they perform and will suggest it's "best" for your situation. That's because that's the procedure they perform and they believe in it (and there's nothing wrong with that) but YOU ultimately must decide (down the road) which procedure is best for you based on what is most important to you. Each man must make his own choice.

Prostatectomy has severe side effects immediately (it even makes your penis shorter but they won't tell you that unless you ask) and even though you can recover from most of the other side effects, sex and incontinence is never the same or as good again. Radiation therapy has similar severe side effects but they come on typically five or more years down the road (and they are not reversible, they just keep getting worse (after radiation therapy of any type). Don't let anyone tell you differently.

So,

1. Get a 3T MRI to make sure you don't have additional "Areas of concern." Knowledge is empowerment!

2. Make sure the cancer is not in areas more likely to metastasize.

If there are no other areas of concern and the cancer is not likely to spread then AS is probably a good option for you.

If the cancer has a higher probability of metastasizing, then please do your homework. Also two options that urologist and radiologist won't tell you about are FLA, (Focal laser ablation) and HIFU, (High intensity focused ultrasound).

My situation is very similar to yours with a Gleason score of six and only one core (actually ended up with 2 cores) with cancer of only 5%. But because of the location, the probably metastasizing was high so I chose to move forward with HIFU. I am in the recover stage now after the procedure. (They were also able to treat my prostate for BPH and potentially reduce some of the urinary problems associated with BPH. (On this forum, do a search on "HIFU EXPERIENCE" (if you want to know more) as I have offered great detail regarding my procedure, both on my progress and setbacks throughout my journey. I'm not advocating HIFU is right for you or anyone else. But I am very happy and, more importantly, at peace with my decision. I whole heartedly believe this procedure can be a "game changer" for many men diagnosed with early Prostate cancer.

I'm not a fan of radiation therapy but if someone were to go down that road, I would recommend checking out proton radiation therapy not photon radiation therapy. It is proving to be way easier on the body and seems to have much lower side effects than traditional radiation therapy. The drawback is...it's very, very ,very expensive. (And it's still radiation).

Good luck to you.

Let me know if I can answer any questions regarding my experience for you.

16

My other half wanted treatment mainly because he didn't want the worry. He only had a 12 core biopsy. I read on the other uk prostate cancer forum of many men that had had the 12 needle biopsy, diagnosed Gleason 6, they went on to have prostate removed and many of them really had a Gleason of 7 or 8 and it had spread to the seminal vesicles or bladder etc. This has happened to many men on the other forum, it wasn't picked up on the MRI and 12 needle biopsy misses so much. I mentioned this to our consultant and he said if we wanted active surveillance then he would suggest a 50 needle biopsy every few years, to make sure a higher grade cancer wasn't hiding in there. My other half also didn't want more biopsies. Another reason he took treatment.

It is almost 2 years since brachy, he is still suffering severe burning on peeing and prostatitis. So he is regretting treatment. But the consultant said as he was 57 on diagnosis that he would need treatment one day. So he had it while he's younger. It is a big decision though.

17

I too had the same dilemna and have decided that, on balance, it is better to bite the bullet and have radiotherapy. I asked the same question as you did and received many replies telling me to have the radiotherapy. I have been having hormone therapy for about 9 months now and my PSA has reduced from 6.5 to 0.2. However, as my Gleason score was 9.5 originally I thought I had better get it over with. It reduces the stress and worry if the cancer is no longer there. Hope this proves helpful and good luck.

18

You don’t have a choice. At you age you can live for another 40 years. There is no argument among doctors that with any type of radiation treatment you will most likely have some type of effect in 20 years. Do you want to deal with that in 20 years at the age of 70? Once you do any type of chemical treatment you cannot have it removed because the prostate turns into am much like oat meal. There are some doctors that will try it but it is call a salvage removal. At you age and the right doctor you should have no problem getting you sex functions back. I am 57 had mine out this pass February and I am back too normal except for getting an erection. My orgasms for some reason are more instanced then before the surgery. I am starting with injection and hoping with in the year be able to get a normal erection but then I have an option of an implant. Also remember that the chemicals slowly damage the nerves around the prostrate so you will have that to deal with. IT IS CANCER MAN, GET THE DAMN THING OUT YOU BODY

19

Sorry to hear of your diagnosis.

Several things come to mind:

1. You have a slow growing cancer. You don't need to rush to a decision.

2. I agree with what ES28567 wrote.

3. Get a 3T MRI performed as it will give you even more information.

4. List what your last few PSA results were. If they doubled in a year or so, then you should consider options others than active surveillance.

20

AFpj,

Tybeeman is correct, radiation therapy makes a prostatectomy a very very difficult salvage operation. The results usually end up poorly with horrible side effects.

But there is still hope! Just for informational purposes, I would like to let everyone out there know that HIFU can be used also as a salvage treatment, (if radiation treatment fails). Plus, if cancer returns after HIFU, the HIFU procedure is repeatable! (No treatment has a 100% success rate. (Not even a prostatectomy where they remove the whole thing).

PLUS...in many cases (like mine) there is no need for hormone treatment prior to the HIFU procedure. So...NO chemicals, NO radiation, NO invasive surgery, AND you get to keep your prostate! Just for the record, I had an erection the morning after my procedure! (It wasn't fun as I had a catheter and really wanted it to go away, but it was reassuring to know I was sexually functional.). Also, I have complete bladder control. (Sometimes you lose that with a prostatectomy (and later in life after radiation and end up in diapers)

(FYI...I'm not associated in any way monetarily with the HIFU procedure and have no vested interest. I just believe it is a great option for men with early stages of prostate cancer.)

Most importantly, don't panic. You have time to figure this out.