Just been diagnosed with prostrate cancer

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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,,

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  • Posted

    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

    • Posted

      Charles your reasons were exactly the same as my other half. He also chose brachy. But unfortunately as I said above he has suffered very bad side effects. 18 months on every wee still burns and when he wees it burns from the tip right up to inside his bottom. He's been on antibiotics about a year in total. Finally been referred back to a urologist next month. He was one of the unlucky ones. Psa was 0.7 last time. That was a year after treatment. Next psa due next week. With such severe side effects he really wishes he'd never had treatment. He can't sit for ling either as he gets a pain in his prostate and down the back of his leg. We know 3 people that have had brachy with very few side effects. It's nice to hear another good story

    • Posted

      Hi Charles

      Thank you for the advice, your story gives me a lot to think about.

      It's only been 3 days since I found out so my heads still coming to terms, albeit that mines none aggressive at this stage I realise I am more fortunate that some.

      I am trying not to rush a treatment decision as its early days. up until yesterday I thought I could watch and wait but not sure I can handle it, i guess I am like you were I want this out of my body and if told its curable then I need to get it done. I am seriously thinking about the low dosage brachytherapy treatment so need to study all the implications like

      my prostrate is enlarged which I am told is not a condition of the cancer, would I still be able to receive the brachytherapy ?

      If I had the brachytherapy and it was unsuccessful would it later prevent me having other treatments such as removal ?

      I wonder about what Alfred's wife mentioned in her reply that a 12 sample biopsy doesn't cover all the prostrate area does brachytherapy only target the area found to have cancerous cells ? What if they have missed an area on the biopsy ,

      As you can tell lots to find out anyone's input would be welcome.

      Thank you

    • Posted

      AFpj,

      You mention your prostate possibly being enlarged. Mine was slightly enlarged, but not causing any me problem. As I considered treatment options, my urologist told me that the 2 options that I narrowed it down to and I was considering - Brachytherapy and Cyberknife, that the prostate had to be within a specific size range. He put me on Dutasteride, which is the generic form of Avodart. He said this works well to shriek the prostate - and it did. When I made the decision for the low dose Brachytherapy, I had to go for a volume study. That procedure took about 10 minutes with the oncologist. And it was not too bad... basically a little worse than a digital rectal exam. This was to map out the size and shape of the prostate. Within 5 minutes, the oncologist told me that my prostate was now an ideal size for the procedure. I was scheduled for the Brachytherapy about 2 weeks later. Also, my urologist put me on Tamsulosin, which is the generic of Flomax. Even though I had no problem with urination, he told me it was just a precaution. After the Brachy procedure, I would have some swelling and inflammation for a little while. The Tamsulosin would help that situation - and it did. Also, ibuprofen was good for the inflammation. For a while, I took two Tamsulosin capsules per day. I now take only one, and will reduce that to one every other day to finally get off them entirely. I have already stopped taking the Dutasteride with no problem. At My 6 month follow up, the urologist told me I could stop taking the Dutasteride. If I can answer any more questtions about the Brachytherapy, just ask. Also, if you look at the website pctrf (dot) org, which is the prostate cancer treatment research foundation, you can see various treatment options discussed with their success rates. Brachytherapy has a good success rate. It is a good website to start with. Give it a look. - Charles

  • Posted

    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.

    • Posted

      Thanks for taking the time to reply , I am going to have to study a lot of the info but your advice has given me a lot to consider and also a lot to ask the docs such as where is my cancer positioned, the only info I have is its on the right . Apparently I have a MRI scheduled soon but wasn't taking much in at the time the doc broke the news.

      Intresting you mentioned proton therapy as my wife who is a nurse asked the doc if it was an option but was told it's not available here in the uk for prostrate treatments, I am going to do my homework on HIFU I am guessing it's none radiation therapy. Pleased you chose the right option if you don't mind I may contact you bk . Lots to consider..

      Much appreciated Thank you ..

  • Posted

    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.

  • Posted

    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
  • Posted

    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.

    • Posted

      Thank for the advice I definitely will not be rushing into any treatment. The doc tells me I have a MRI scan scheduled soon also will keep an watch on my PSA level rising.

      Thanks..

  • Posted

    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.

    • Posted

      HIFU treatment seems like a great treatment but unsure it it's available in the UK, does anyone know ?

      Thanks ..

    • Posted

      Yes it is but I don't know if it is covered under the gov. Health program. Do a search on HIFU experience and find posts from Carolyn. Her husband had the procedure about 14 weeks ago and they live in UK.

  • Posted

    My Gleason level was right around what yours was. And I had a very low level of cancer found within my prostrate. Diagnosed last October I was initially shocked like you and also tasked with the many alternatives of treatments available. You have a lot of time to look into every available treatment and I took a long time to decide myself. You need to decide what is most important to you. There is all kinds of information and opinions all over the place. But it comes down to you to decide what is the most important. I felt that there was a good chance that my cancer would not spread for maybe 10 years. But there was a smaller chance I don't know how small very good spread even between biopsies if you had one every year. I did not like these side effects of every treatment so I held off. In the end I decided to have a robotic prostatectomy 2 weeks ago because I felt that it was more important to me 2 rid myself completely of the cancer. It took me a long time to decide this and you have a long time for you to decide. I didn't like the possibilities of what would happen if radiation didn't get it all. I wanted to get it all. I am 56 years old and am happy that I decided that I was not going to eventually die of this particular ailment. Good luck to you and your decision making and remember there is no easy decisions

    • Posted

      Mark,

      You are correct when you say there is no easy decision. I equate it to; every man must decide from which cup of poison to drink. But the good news is there are better and better choices with less harsh side effects becoming available.

      I think your statement that you chose a prostatectomy because you wanted to rid yourself "completely of the cancer" is everymans goal. I think your choice of a prostatectomy was right for you and the percentages that the chance of getting rid of prostate cancer are in your favor.

      However, I would like to point out that a prostatectomy does not assure you of that goal. There is a certain percentage of men who will still have a reoccurrence of prostate cancer (even with a prostatectomy) and will need additional radiation therapy.

      I'm not saying a prostatectomy is a good or bad decision for any man, just that it is not an end all solution and no one should decide on a prostatectomy because they think it will completely rid them of cancer. There is no such guarantee with a prostatectomy or any other procedure.

      Wish you the best of luck.

    • Posted

      I agree with you I did not mean to misrepresent any facts. With several months of research you're right I decided that this was the best decision for me in my heart. With any treatment there is a chance of not taking care of all of the cancer. When you are done with your radiation treatment and there is a reoccurrence your options are more limited and more harsh as your prostate has been rendered virtually inoperable.

    • Posted

      I was in the middle of my reply and accidentally sent the last statement without proofreading. Anyway after the prostate removal and there is a reoccurrence radiation is still on the table along with other options I believe which are less devastating than the radiation first scenario. The side effects are basically the same for both treatments they just happen at different timetables. There are other treatments that one might use if sexual function was at the very top of their priority list which for a while I thought it was at the top of mine. These treatments at different degrees would significantly reduce most of the cancer. The word cure was not in the description of the results of any of these options except for the prostatectomy which if only in the prostrate a cure is very possible. My results so far is 0 cancer in that area and 0 in the lymph nodes. In a month there will be a follow-up PSA test which I hope will be more of the same results. There is no easy way out and yes there are much easier and less devastating options and you can play the odds and there is a good chance that you will win. I just didn't like the results of the small chance that I would lose.

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