One month after prostate surgery good news and bad news

Not too much encouraging feedback for a possible Swift recovery of sexual functions. I will go to my doctor on Tuesday for my 6 week post surgery check-up and a PSA test. At that time I will ask about how to proceed. I hear the goal is to get blood into that area daily inflating daily and there are various means to do this from vacuum pumps to injections to medication. And from what I understand this is just to make sure that the organ is ready when the nerves decide to wake up which will be months maybe many months

Have you heard any encouraging news about if I should take the blue or cialis pills just yet?? I'm thinking maybe that might get some activity going....

I was reading on a site the other day that the injections, including self injection is better than the pump. The injections cause venus blood, which has more healing properties than that if you use a pump and it draws up blood from elsewhere. They said either of the tablets were ok. They also said to get treatment going asap.

Hey geoff,

I was watching a lecture (by video) where they talked about how the Italians seem to be more advanced/aggressive in treating and restoring sexual functions after a prostatectomy. They get patients on injections, pills, AND the pump very quickly. Their school of thought is the sooner the stimulation the better the recovery. Just because the injections might be more effective than a pump is not be a reason not to do both. I would do all three, pills, pump, and injections (unless the doctor had a good reason to advise against it).

Agree ES. I think super important to just get some sort of responce by what ever works for you. If it takes all three, then go for it.

Robert-CA,

my surgery is approaching soon. Scheduled for RRP with nerve sparing but I am very concerned about incontinece and ED after prostatectomy. 

I read other patients experience with incontinece and ED and that's very concerning. I am also young, 51. I want to have quality of life if not same than at least close to what it was before surgery. Wearing pull ups and pads is dehumanizing; being impotent means to me not being a man and sadly, every urination will be remainder that penis post prostatectomy has only urination function. 

Another observation, guys are very much discriminated by  insurance companies. Insurance companies are refusing to pay for anything that relates to sex like Cialis, viagra, penis pumps, injections, implants etc. 

Having this in mind, my future after prostatectomy it will be a disastrous.

MK

 

What is your Gleason score?

what did the MRI indicate? Assuming you had a mri

 

Focus on the positives.  You will be alive, and hopefully you will be cancer free.

Recovery will take time, and it's not easy.  The biggest problem for most men is depression.  So find a coach or support group.  You can get through this!  

Gleason 7 (4+3). No MRI. My insurance did decline MRI. I had only bone scan.

Amen Robert-CA

I assume you did not have an ultrasound guided fusion biopsy because you didn't have a MRI.

An mri can make the biopsy more definitive and can obtain a better understanding of the true nature of the PCa.

Incontinece will improve with time, don't be so downhearted. As for sexual function, with medication to improve blood flow, this too will improve.

Dont loose sight of the reason for surgery: to remove the cancer, ideally once and for all.

Since you did not have a MRI pre-biopsy I wonder if you had the transrectal biopsy? What would it cost if you were a self pay patient given your insurance doesn't cover it?

If you're worried about ED nd incontinence, have you considered brachy therapy or proton therapy?

 

MK51151, with all of the other options available there is no amount of money on the planet you could offer me to have a prostatectomy.  Research it yourself, I think you'll agree.  Someone said your biggest problem will only be depression.  Are you really living if you have major depression?  Unfortunately far too many feel the procedure saved their life.  Look up the number of prostatectomies needed to done to possibly save ONE life.  All the others had their lives destroyed and didn't even lengthen their life.  For the people that had the procedure I mean no ill will.  I sincerely wish you the best.  But I personally hate urologists for the way this disease and procedure has not been accurately presented.  There's a reason screening isn't even recommended.  Lives destroyed >>> Lives saved.  RESEARCH NOW MK.  Afterwards it's too late.

Carlos10001 That was a crazy message that should not be allowed on here. yes there are a lot of opsion but prostatectomy is one of them. Sure if you love to have chemicals pumped in to you body and having the walk around the rest of you life hoping it work great that is an option. Plus do your research with any cancer the recurrence rate after radiation or other chemicals is high. This is a tough thing we have to deal with and prostatectomy is the right option for a lot of us, The only thing I will say that you hit on is the depression and I di prepare for it as best I can but I am sticking with a strong therapy program that I now have my consistency back my penis size if back and with injections I can have great sex,  But with the thing out of me I am not peeing all over the place and have better flow and don’t have to get up 3 time a night o go to the bath room.

The latest research I have read indicates that prostate surgery cuts the detah rate by more than 1/3.  Of course that is "backward looking" data...  presumably surgeries done today are more effective and have fewer complications than surgeries done 15 years ago, so the results should be even better.

Moreoever, when considering the side effects of prostate surgery, you need to compare them to the side effects of other treatments, which can be just as bad.  

I think that every cancer, and every patient, is different, and men need to make the right choice for their specific situation.

My RO said neither Brachytherapy nor Proton radiation are my options.

He also said either surgery to remove  the prostate or IMRT with lupron and  Casodex are options that I have to chose from.

i decided to go with robotic prostatectomy which is scheduled for November 2nd.

MK

Carlos,

i appreciate your comment. When you take in consideration that my primary goal is to get reed of cancer than surgery at my age of 51 is very reasonable option. After surgery I will have the most comprehensive pathology report and will know what could be expected in post recovery time in regards of Ca size, location, if contained or escaped out of gland, surgical margins etc.

I am young and motivated to get back to normal ASAP and whatever it takes from my side and will work to minimize SE of surgery to overcome incontinece and get back to my pre surgical level of activity.

Words of support and encouragement are welcome.

MK

Hi Carlos,

Well, fortunately Tybeeman doesn't get to decide what is allowed on this forum, Lol.

So a Couple of points, first, there are certain cases where a prostatectomy is the only option. I will agree with Tybeeman that radiation should probably be the last choice if the cancer has not spread. However, if it has, then radiation treatment becomes the best option because a prostatectomy will not rid you of all the cancer and you will most likely have to do some form of radiation therapy anyway. The best radiation therapy I have found is proton radiation therapy because it does the least amount of damage to healthy cells. The downside is it is very expensive ($50,000) and is not currently covered by most insurance plans. The good news is some insurance companies are covering it. Note: while investigating my options, I personally talked to people (some face to face) who are up to 12 yrs. post procedure and are still cancer free and experiencing little to no side effects.

Tybeeman needs to stop lumping all other options as having chemicals in your body. HIFU and FLA do not use chemicals. As a matter of fact, these two options are even more chemical free than a prostatectomy when you consider the therapy after a prostatectomy includes hormone therapy, penis injections, and pills such as viagra.

I feel very fortunate to have discovered the HIFU procedure. No side effects of any kind. No chemicals. I'm 8 weeks post procedure and I can truly say, it's almost like it didn't even happen. I say "almost" because it did happen and I went through the physiological stress (including some depression and anger) as I researched and confronted this disease. And that experience will always be with me. But physically, everything works as well if not even better than before the procedure. I certainly can't ask for more than that. HIFU is not cheap, ($25,000) and only a handful of insurance companies are starting to cover it. But with my young age and being married, the cost was well worth the outcome. I'm not rich, I even got a 2nd job to help pay for the procedure. But for me personally, the cost was small for the preservation of my health and the opportunity to keep all my man parts (and functions) with no side effects.

This is a horrible disease for any man to go through and there needs to be more national support and awareness like what is given to breast cancer. Early detection is the key.

Last word: If you have to have a prostatectomy or radiation treatment, my prayers are with you. Do everything you can (therapy wise) to get back to where you were before your procedure. The road is tough but don't give up because you can and will get through this. ALL procedures are getting better and are constantly being improved upon and recoveries are continuing to be much better and faster.

God bless.

Just to clarify, the depression and anger I mentioned was after confirming I had prostate cancer and while researching all possible options. Every option was like a cup of poison. They would cure the cancer but not without their own bitter side effects. After I discovered the HIFU procedure and coming up with an action plan with Dr. Scionti, it was like a weight being lifted off of me.

If you're under say early 70s and the PCa is believed to be confined to the prostate then I agree, surgery is a good choice. That's what I had in mid August.

The upside of surgery is that even if it isn't 100% successful you can have RT (or any other therapy) afterwards. Having RT as the first line of defence removes surgery as a possible the 2nd line of defence.

I have a 3 part question for you.

1. Is proton therapy the same as HIFU? If not, then what's the difference.

2. Is proton therapy or HIFU used in post surgery salvage therapy to remove a cancer that is believed to have been left behind?

3. Where would you go for such treatment assuming you hasd surgery for what was believed to be localised PCa.

Thank you

Hi Barney,

1. No, HIFU is not anything like proton radiation therapy. There are basically 4 types of radiation therapy but the most common is Photon which is for the most part, X-rays. X-rays start out at their highest strength as they enter the body, go through the tumor and out the other side of the body. To minimize damage to healthy cells, several angles (entry points) are used. In contrast, Proton radiation delivers the majority of its power to the tumor and then stops so there is no damage to healthy cells on the opposite side of the tumor. That's what makes Proton therapy better than Photon therapy. There is less damage and less side effects. All radiation treatments do the same thing. They damage the cancer cells so they cannot grow or multiply. Then the cancer cells die off. It is called programmed cell death. Checkout the book called "You Can Beat Prostate Cancer" by Robert Marckini. Excellent book!

HIFU has NOTHING to do with radiation. It is the use of ultrasound. The very same thing used to check a fetus inside a mothers womb. However, when focused to a precise point, Ultrasound kills the targeted cancer cells. Think of the suns rays passing through a magnifying glass and focused to a spot where it burns a piece of paper. That's basically how the ultrasound kills the cancer cells.

2. I cannot answer if Proton therapy can be used for salvage therapy after a prostatectomy. It's still radiation treatment so I don't see any reason why it couldn't. I do know that HIFU can be used for salvage therapy after radiation treatment. I don't know if HIFU can be used for salvage therapy after a prostatectomy. One great thing about the HIFU procedure is it does not limit your options if the cancer comes back. You can still have a prostatectomy, radiation, or even the HIFU procedure itself can be repeated.

3. So I think you are asking where would one go if there was still cancer after a prostatectomy. I have not researched that as I have not crossed that bridge.

Personally, I am not a big fan of any type of radiation therapy except in the case of salvage therapy after a prostatectomy or if surgery is not an option. Or if the person is more than 75 years old because I believe eventually (15 or 20 years down the road) the radiation will catch up with you.

My first choice is HIFU if the cancer is still contained in the prostate. (I just received a post from a man who was treated with the HIFU procedure that had a Gleason score of 8). HIFU has only been performed in the US for about a year and a half but over 15 years in other countries and just off the shores of the US. It was and is the right choice for me.

Every man is different and must choose the best procedure based on his specific physical condition of cancer and his psychological make up of what he is most comfortable with. This is a personal matter and I think we need to support each other in whatever decision we each make. My hope and prayer is that each man will only make their decision after extensive research and they are well informed so they minimize the chance of any regrets after their procedure.

I hope I have answered your questions.

ES, did you see the Medscape information,"Largest Series to Date Finds HIFU Effective for Localized Prostate Cancer", by Anne Harding. I would put a link here, but they often seem to cause the whole reply to be zapped. If you can't find it, I can pm it to you.

Geoff

That's very encouraging Geoff. I did a quick search but didn't find it. I will look again later or you can go a head and pm me. Thanks so much. We will beat this disease over time. There is strength in numbers and we will prevail

ES, the HIFU got a good report. They admit it is still a newish procedure, but seems to not only get rid of capsulated(is that a word?) PCa, but seems to not have long term side effects...time will tell. Maybe if and when it gets accepted as main stream treatment, the price would become more affordable and while not holding my breath, insurances would cover it. 

Geoff

Emis Moderator comment: I have removed the link as it went to a login page. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Thank you for your reply.

I now understand HIFU.

I endorse your attitude in supporting each other regardless of the choices we make.

good advice barney. THat's my experience too.