Just been diagnosed with prostrate cancer

Thanks for the advice

Already booked appointment with our local cancer group here. First thing I am going to ask at my first appointment with the docs, is HIFU treatment available, as given the option, even at this early stage, I see no reason not to have HIFU treatment as it still leaves me options afterwards that other treatments don't such as Brachytherapy which would probably be my next choice.

I guess it's available in the US ? I think it's under clinical trial here but I think you have to be referred to receive the treatment .

I can ask my doctor if he can give a recommendation for a doctor in the UK if you would like. Where about are you located?

Located in Manchester many thanks

Everyone is different, therefore treatment is specific to the total prostate cancer found and any other issues the urologist has found, such as urinary problems and size of prostate. For example, seed implants are suggested for average or small prostate, ( following guidelines of the National Cancer Center). Your urologist will be in the best position to advise you on what he found and treatment options. Given your age, Gleason score, and urinary issues, get advice from professionals and speak with other men who have had treatment.

Don t lisen to these people. IT IS CANCER MAN, GET THE DAMN THING OUT YOU BODY

Tybeeman,

Your comments are counter productive. In some cases of a cancer diagnosis, it is prudent to act right away and to be aggressive with treatment. However in many cases, such as this one, the cancer is considered slow growing and nonaggressive and therefore time is on his side.

There are too many stories of men who took the very action you suggest and now live with regret that they did not take more time to research and decide what was truly the best course of action for their specific situation.

There is not a "one size fits all" when it comes to prostate cancer treatments and your statement is irresponsible!

Yes. As I said earlier, my other half wishes he'd not had treatment yet.

No you are wrong. He is 50 years old. If he starts putting chemicals in his prostrate now, he will have a hard time removing it later. Also it is known that if you start putting these chemicals in your body now that you are almost certain to have problems with them in 20 years. In his case he will be 70. That is still in today’s world a young man. Now if he was 70 by all means, there are options.

Why would anyone in their right mind leave a cancer in their body if it can easily be removed. Robotic surgery is considered an non evasive procedure now

There is an excellent publication by the National Cancer Center you can get online called the NCCN Guidelines for Patients- Prostate Cancer. It is the result of international collaboration among cancer centers. I found it helpful and thorough and was the basis of several frank discudssions with my urologist, the radiation oncologist and the surgeon. The online publication is new, 2016 latest version. Best of luck in whatever choice you decide.

I like you feel the same way about leaving cancer in my body that's why I had my prostate removed 2 weeks ago. Everybody needs to make their own decision on what is important to them but they owe it to them self to get all the facts. Know every ramification of every treatment inside and out and why every pro and con. And also what it would mean and look like if the cancer actually spread. There is a lot of sadder stories that have been on this very forum of prostate cancer treated in the later stages. On the other hand the nerve sparing prostatectomy that I just had sure feels invasive to me. And the side effects are not fun and it is life-altering. But at least the cancer is gone. Everyone needs to make their own informed decision and they need to know that no matter what doctors radiologist s or other members of this forum say, there is no easy way out

Hnag in there Mark I had mine out 6 months ago it will get better. Make sure you get on a therapy program for the erection  part

People in their right mind would leave a cancer in their body if the cancer is very slow growing with a good chance that it would not pose a hazard to their health in the medium term.

Not every cancer has to be removed when it's identified.

Just ask the many patients with Gleason 6 who were railroaded into radical surgery and have to live for the next few decades with the unhappy life altering consequences.

Tybeeman,

You blow my mind with your outlandish claims! First, robotic prostatectomy is considered less harsh than a open prostatectomy but there is still incisions made and medical devices are thrust inside the body. Just watch a few videos on the operation! It is INVASIVE and it is still a MAJOR surgical operation) There is blood, cutting and a harsh and very long recovery time with some of the side effects lasting up to 2 years. DO NOT sugarcoat any type of prostatectomy procedure! And in some cases the side effects may never go away! (Also, the penis is shortened and that effect never goes away and they won't even tell you unless you ask).

Your statement "why would anyone leave cancer in their body is also somewhat misleading. Only in active surveillance are you leaving cancer in the body. With the procedure I had, (and I'm not advocating it is for everyone) the cancer is killed and the dead cancer cells are flushed out of the body. So the cancer is gone. As long as I have a prostate, there is a chance I could get cancer again but that is true with ANY procedure including prostatectomy.

So, between your option and mine l, here are the general differences...

We both get rid of the cancer and:

I retain continents and you lose it

I retain all sexual function and you lose it up to 2 years and when and if you get it back, it is never the same or as good.

Your penis is shorter and possibly deformed in shape when you can finally get an erection.

My procedure is way easier on the body and truly noninvasive while prostatectomy requires a longer recovery time and is still so harsh that some, less healthy, people are disqualified because there is a chance they won't make it through the operation.

If your cancer returns, your options are limited. I still have EVERY OPTION AVAILABLE plus...HIFU is REPEATABLE!

So here is the difference between what you tell people and what I tell people who are diagnosed with prostate cancer.

You tell men to panic and just get the prostate taken out.

I tell men first, don't panic. In most cases of low grade non-aggressive cancers, time is on their side and to consider all their choices and decide what is right for them based on their goals and what is important to them.

So stop telling everyone to have a prostatectomy! This is not a one size fits all. And even if a prostatectomy was right for you...it's not the right decision for everyone.

So I had my prostatectomy on a Friday, out of the hospital on Saturday. Catheter out on Tuesday, Released on Wednesday and back at work on Thursday. What part of that was long recovery.

My consistence was back in 3 months and that was just having to use a small pad.

I am at a 6 months and wit the vacuum pump therapy my penis size is almost back too normal.

 After one month my orgasms are much stronger that before. There is a study on what this happens to a lot of men. I am just happy as hell with it.

Erections will come back but I am getting use to just injecting my slef and having the hard on of when I was 18.

No Chemicals in your body.

Read the web site for the Global Robotics Institute 9500 robotic prostatectomy so far

Long-term recovery, READ YOUR OWN POST.

Inconsistence

You...3 mos.

Me....0 mos.

Penis size

You...Even with vacuum pump still not back to normal size so 6 mos. and still counting. That's long-term. (And unfortunately, there is no guarantee it will ever get back to normal size but I hope for you and anyone else it does).

Me...just as long (or short...lol) as before HIFU.

Orgasms

You...Very glad you can have them but they are DRY. If you read what most (not all) men post, they don't like them. And this side effect is FOREVER! That's "long-term" in my book.

Me...all functions are retained.

Erections

6 mos. out (and still counting) and no natural erections. We can chalk that one up to "long-term". BTW, I'm very glad to hear you are doing injections, that is very helpful in your recovery (no sarcasm meant hear).

Me...had a natural erection the morning after HIFU. (It was rather uncomfortable as I had a catheter so even though I was happy everything was working, at that moment I actually wanted it to go away. FYI, it was not an anomaly, I continue to have erections. No pills no needles.

No Chemicals in your body.

You...Well, you are putting chemicals in your body when you give yourself injections for an assisted erection. But, I understand that you are talking strictly about other therapy treatments.

Me...no chemicals in my body.

HIFU is ultrasound. Same technology used to look at a fetus in a mothers womb.

Do I think HIFU is superior to prostatectomy (or any other procedure)? YES...that's why I chose it. It was right for me.

Do I think a prostatectomy was right for you? YES...because you did your research and it is what you felt was best for you.

But don't tell men to have a prostatectomy. Tell them your great experience. Be honest with them and let them know both your success and struggles so they know what to expect should they go down the path you choose.

But your last statement should be to...

Tell them that they are their own best advocate and to research all the available options and decide for themselves what is the best course of action for their body and their life. Because ultimately...they must live with the choice they make.

I agree barney, my Gleason 7. And I left it there. My decision after I found out it was slow growing. Also age is considered also, in treatment versus non treatment.

Great comparison side by side.

I just want to ask everyone: Aren't we all here with same problems and looking a for other people honest experience?

I would like to use HIFU for my treatment but it was not recommended neither by urologist nor RO. Both of them agreed that I need either surgery or radiation for my Gleason 7b. Other problem is that HIFU is not covered under my plan and to pay out of pocket I can not aford it.Every honest experience gives us here more knowledge so we all can make what is best for everyone, or more times what is affordable.

want to thank all for first hand experience.

in just few days I will be making final choice for my treatment.

 

OH one more thing. I am back on Testosterone replacement after 3 months. Can’t do that unless it is removed are your crazy

Not true at all. Testosterone is available as part of recovery regardless of cancer treatment.

According to the NCCN guidelines for PC therapies, men are to be assisted to sexual functionality regardless of type of treatment. Radiation, hormone therapy, or surgery. Testosterone replacement can be a part of the recovery plan but it's not always recommended: each person's therapy and recovery should be guided by health professionals who track these things. That's why it's important to get firsthand information from guys in your cancer center that have had a wide range of procedures done. They talk openly about issue such as sexual function.

Sorry to hear that MK.

FYI, My urologist had told me I was not a candidate for FLA or HIFU but that is because he does not perform those procedures. So don't take the word of a urologist who doesn't perform the procedure. You would need to send your medical records to a specialist who does the procedure to find out.

But it sounds like it would be a waste of you time if finances are an obstacle. I have heard some men have used money from their IRA to pay for the procedure. I myself borrowed a portion of the funds.

Right now most insurance companies are not covering the procedure but some are starting to cover a portion of the costs.

Best of luck to you.

How long after the catheter removal did you start a program?

30 days My doctor didn’t put me on injections for 3 months but a lot of doctors will put you on them early so you can have an erection. That vacuum pump is for real it really didn’t help me with erections but there is no doubt that I am getting my penis size back. I do it every night for 10 minutes. Mark, you need to look at this as the Trifecta. First get rid of the cancer. Second get you consistency back. I use a dipper for about 3 weeks then a heavy pad for another 3 weeks then a very little pad for 4 weeks. The little pad really didn’t bother me that much but the doctors didn’t want me to wear them because it didn’t make me think about the muscles.  After 3 months you will be left with the third thing which is the erection part. I love the dry orgasms.

Thank you that sounds promising. As you probably know it's kind of depressing for me at the moment

http://www.nbcnews.com/health/health-news/all-prostate-cancer-treatments-about-equally-effective-study-finds-n648471?cid=public-rss_20160915

This just came out today.

I will admit is a little depressing at first but get that pump therapy going and try to get on the ejections. One thing I and a lot of people have found out the orgasms can be instanced because they are dry they last longer because of it. You will need to masturbate also.

Very interesting article from NBC.

As many argued in here, with a low or medium grade carcinoma many options are available, including monitoring.

However if a biopsy indicates an aggressive cancer then the choices are more limited.

A potential problem for some men is that if a  biopsy reveals a Gleason 3+3 or 3+4 when in fact a post op pathology could reveal a more aggressive cancer. And treating an aggressive cancer with non aggressive means is unwise.

Barney You hit the nail on the head. I was being told that we could take a wait and see approach. After it was removed the doctors told me I was a lucky man that it was worst and if left in would have spread out of the prostrate. Just don’t understand these guys with the technology the robotic surgery offers why leave it in there. The younger you are the better percentages of getting all you function back too normal. The older you are there are a lot of aids that help.

David. Great read. Thx for sharing. Your Gleason score is not necessarily the indicator for treatment or active watching in some cases. Your pathology remains can be further tested, as I have indicated in other posts. A man's age is taken in consideration also.

I haven't been on this form for a while but I am looking back on when I was active on it and I found this discussion. I had a prostatectomy six months ago and that puts you at a year and I was wondering how your sexual function is. Cialis does not work for me the only thing that works is the injections. How are you doing after a year?