HealingWell
Search Close Search
☰

retrograde ejaculation with proton beam therapy

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/2/2009 6:47 AM (GMT 0)
Hi everyone, well, I wish I wasn't here but I was just diagnosed with prostate cancer. the good news is, it looks like I am in very good company, and am lucky to have this forum as a resource. I am exploring options. I understand most of the possible side effects, ie ED, incontinance etc etc  with surgery and conventional radiation treatments. But,  in addition  my doc told me that with surgery or radiation you will absolutely end up with dry orgasms or retrograde ejaculation. I have read about a few people that have the seed implants and say they still have some semen left but I can't find out if PBT is able to save enough healthy tissue to avoid retrograde ejaculation. I keep reading " no or few side effects" when I read about PBT but i have not seen the issue of retrograde ejaculation mentioned in anything I have read. There is a process involved in a consult at the PBT centers, so I can't just call up one of  their docs and find out. I cannot join the protonbob website because I am not currently scheduled or under treatment, so I really don't have a resource for this question

If anyone knows or has a good source for this, I would appreciate your thoughts........thanks very much....bob

PSA 3.5 and moving up very fast

gleason:  4+3 and 3+3 bilateral on two out of 6 samples ( I know, its probably an inadequate biopsy, will do another one if I do radiation)

DRE and ultrasound were "unremarkable" 

" and in the blink of an eye, his whole life changed"

Posted 4/2/2009 12:57 PM (GMT 0)
Hello and welcome here, Bob. I wish you weren't here for sure, but you are, so you need to be among our happy throng of men and women. The dry ograsm thing puzzled me for months before my surgery, and the entire time since. The hard part, is disassociating your brain from the act of pleasure in the orgasm from the act of ejaculating. That took me a good month, now I hardly ever think about it. At first the orgasms were weak and distant feeling, pleasurable, but not much as a feeling of relief. I was told they generally get better over time. In my case, boy, have they. My ograsms are much longer in duration, much deeper in feeling, and it is nice, never worrying about messy problems. My transistion to this has only taken about 2 months or some from my first post catheter orgasm. Been able to have sex as much as 3x a week, which was more than my average before surgery. I don't know if all men here post treatment experience this or not, but I am producing more and more pre-semen (they tell me its from the cowpen's gland, that obviously wasn't removed). During my last orgasm, it produced a mini-ejaculation of this sticky fluid right through the tip. It amazed me.

Can't answer your other questions, but many here can. I hope you stick around and keep us posted.

David in SC

P.S> If you have a fast accelerating PSA, the actual velocity I mean, and a biopsy dx. 4+3, you already have a potentially agressive cancer going on there, so becareful in your choices of treatment and how long you decide to wait to be treated.
Posted 4/2/2009 7:05 PM (GMT 0)
Bob...
I was diagnosed on 4/08 at 50 years old. PSA 4.6, gleason 3+3, T1c.

If you have not seen it yet, I advise a book by Robert Marckini, "You Can Beat Prostate Cancer", which does a very nice job at exposing all the relevant options out there. He's an advocate of Proton Beam, but with very unbiased, fact-based information about all the research he did before making his choice.

I selected Proton Beam, and had 39 treatments in July/August 2008 at Mass General. In all my research I have never see retrograde ejaculation as a side affect from Proton Beam. That said, for a while during treatment I was taking Flomax daily to assist with the enlarged prostate symptoms aggravated by getting zapped daily. Flomax did in fact cause the retrograde problem; it's a wierd feeling, but no issues. I since went off Flomax (and back to Uroxatral daily) to manage my continued enlarged prostate symptoms, and no retrograde problems whatsoever.

The theory is that the healthy tissue heals after PBT, and the cancer cells are disrupted and unable to divide/grow, hence it dies off.

Semen volume has decreased about 30 - 40% over time for me, starting back a year or so before diagnosis; but otherwise, other than some fatigue at the time, and what I mentioned above, I am healthy, active, and no significant side affects at 8 months after treatment - and "everything works". My PSA is down to 2.99 (and falling) with a hopeful outlook for <1 in another 18 months.
Posted 4/5/2009 4:38 PM (GMT 0)

Kpac, thanks very much for your reply and sharing your experience.  I have bob marckini's book on order and in the mean time have contacted several patients that have had proton beam therapy . It is a very viable option that not everyone is aware of.

the people I have contacted said the same thing you did. Semen production was down, but no retrograde ejaculation problems. Also no incontenance and every thing continued working. Fantastic. If I was older, maybe this wouldn't bother me but like you I am very active and life quality issues mean something.

did you have any problem with rectal bleeding after treatment? My research indicates that some people do after surgery and then it goes away after a time. What did you experience?

Thanks again Kpac for your response. I hope anyone who has been diagnosed considers this therapy. It is expensive, time consuming but does preserve function with similar survivability statistics........all the best bob

 

Ps I hope you post your after treatment experience from time to time!

Posted 4/5/2009 11:19 PM (GMT 0)

Bob:

I am a 7 1/2 yr survivor of PCa and had proton treatments at Loma Linda.  Have not had any side effects from the treatments - as far as ED, Viagra works for me if needed.  I had already been having a few issues with slight ED due to medications.  Have never had the retrograde problem and my orgasms are dry and have been that way from very shortly after completed proton.  Am in contact with quite afew guys who have had proton and have never heard retrograde mentioned.

As for rectal bleeding, I have heard that it can occur in about 25% of patients and the severity can vary.  Most cases are minor and don't last very long - not painful, just a bother.  Had one friend who had a more severe case and he had argon coagulation procedure that took care of the problem.  I have heard it explained as being like a sunburn where the skin peels off - this is the rectal wall healing and sloughing off the old tissue.

I too was older when my PCa was discovered and quality of life was very important.  I wish you the best in your research.

Dutch

Posted 4/5/2009 11:44 PM (GMT 0)
Hi Dutch, nice to hear from you.

I am a little confused about the following comment you made in your post  in reply to my questions.

"Have never had the retrograde problem and my orgasms are dry and have been that way from very shortly after completed proton.  Am in contact with quite afew guys who have had proton and have never heard retrograde mentioned."

As I understand it, retrograde ejaculation is "a  dry ejaculation"  So you did have the retrograde problem and have dry orgasms?

Do the  guys you are in contact with have dry orgasms ie retrograde ejaculation or do they  have wet orgasms? 

Just a little confused and I think the term retrograde ejaculation confuses everyone. It implies there is an ejaculation, when there isn't, it is a dry orgasm and there is no ejaculate as I understand it. Please let me know if I have this correct and again, thanks very much for your reply to my question

.....bob

.  

Posted 4/6/2009 1:15 AM (GMT 0)

Bob:

From my understanding, retrograde ejaculation would occur when the body is still producing semen.  With surgery, the prostate is removed so there is no more ejaculate and with radiation the volume of ejaculate is greatly reduced, sometimes to nothing.  Both would result in dry orgasms. 

In my case, I never had any retrograde ejaculation problems prior to proton and since proton I have dry orgasms.  The majority of men who have had proton that I am in contact with do have dry orgasms.  Hope this clears up the confusion.

Dutch 

Posted 4/6/2009 3:52 AM (GMT 0)
 

Hi Dutch, thanks for clarifying that. I guess it depends on how much healthy tissue is left for the prostate to continue to produce anything. I assume you are on protonbob, so you have input from a lot of people. I have only talked to 2 people so far from the list that bob marckini sent me, but both are still producing semen and it appears that Kpac above is in that category.

honestly I didn't even think about this until my friend told me I would be dry and have to get used to it. ( He hasn't gotten used to it yet) He had surgery and I was just wondering if PBT was that same way. This is one of those side effects you don't hear much about and for some people its probably not a big deal and others it might be.......thanks again..........bob 

Posted 4/6/2009 9:17 PM (GMT 0)
Bob,

Regarding the rectal bleeding question and proton beam therapy: I have been told by some men who had it done at Loma Linda that they had some minor bleeding about 6 months after treatment and that it subsided. Each proton center has a slight different protocol for treatment. While I was advised at MGH that this could be a side affect, my Doctor indicated he expected I would not have this issue. And, at ~8 months, that has been the case - -no bleeding that I am aware of.

As much as I am quite confident that I would chose proton beam therapy again for treatment, and as impressive as it appears to be in terms of minimal side affects and favorable results, I advise researching all the options and deciding what's best for you.

The book you ordered should help... here are some other references for you:

www.protonbob.com

http://www.proton-therapy.org/
Posted 4/6/2009 9:27 PM (GMT 0)
Bob,

It appears I may be the only one here with wet orgasms after treatment. My treatment is a new clinical study. If you want to know more about it. Look at the thread with this as a subject.

ONEMEDTV's Targeted Focal Point Treatment Video
Posted 4/10/2009 9:02 PM (GMT 0)

Realziggy, thanks for your comments on target focal point therapy. thats a new one on me, I have not heard of it at all. I am in denver and I realized that CU med center is really good for prostate cancer treatment, so I will check it out right a way. They must not damange good tissue very much is you are still producing semen. Stay in touch and let me know how you are doing....all the best ..bob

Posted 4/10/2009 9:08 PM (GMT 0)
Oh, sorry but Kpac what are your thoughts in MGH for proton therapy. A few years ago if we wanted PBT treatment there was only one place to go. Now there are 5 and I think they are all doing it a little different. Were you happy with MGH? do you think there is much difference from one center to the other based on cure rates etc. I don't care if a facility has a great health club or if its in a nice area, I just want the best science. right now I can't even get into LLUMC till august. I have sent infor to MD Anderson and hope to get a consult in a month or two. Anyway, your thoughts on treatment quality and technology at MGH is really appreciated..............thanks bob

Posted 4/10/2009 11:55 PM (GMT 0)
Hi rsilver,

I am another here who had Protons at Loma Linda, 44 treatments to be exact. I am now 18 months removed from completion of treatment and have never had any retrograde ejaculations, in fact I still have a considerable amount of ejaculate though I was told prior to treatment to expect it to dry up over time. Still waiting for that to happen. Other than some urinary irritation starting at about treatment 22, which was treated with ibuprofen and pyridium (phenazopyridine) I never had any other issue during treatment or after. No rectal bleeding, no ED, have never taken any Flomax either before, during or since.

As always I am open and willing to talk with any interested person about my experience and results. Just click on the email link below my name and we will set up a phone conversation at your convenience. Take care

I should note that my sig below is now incorrect and I am 56 years old as of the 20th of last month.

Posted 4/11/2009 12:30 AM (GMT 0)

Bob,

I did not consider targeted focal therapy, but I have a concern with any treatment that leaves "healthy" prostate tissue. I welcome differing opinions on this. My concern stems from the fact that prostate cancer tends to be "multi-focal", cropping up in several locations at once. Dr. Walsh states that the average number of PCa tumors within post-surgery pathology is SEVEN. It may be that something triggers DNA mutation across the entire prostate, leaving healthy tissue close to becoming cancerous (just my theory). Any treatment that leaves damaged but noncancerous tissue could be opening up the chance for cancer recurrence in the future. Again, this is my opinion, but I would want to understand this potential thoroughly before considering the targeted therapy.

BTW, although strange, I have gotten use to the dry orgasms and still enjoy sex very much.

CaPCa

Posted 4/11/2009 1:20 AM (GMT 0)

Hi Jayadub, thanks for your offer of communication and discussion of your results. I will probably pm you soon.  The more people I have talked to now about PBT, the more is seems that semen decreases for sure and I am interested that the Doc's at LLUMC told you that  eventually it will dry up. Something I have been trying to find out, but not able to cause its impossible to have a quick chat, consult or email with any of the Proton docs. well, I guess RGE is something I will have to get used to with just about any therapy. I think it also depends on the type of tumor, the extent and the amount of remaining tissue that stays "well" and thats a crap shoot, with better odds for lower grade less extensive tumors. thanks for the input on this, "no easy way to be free"..................bob 

Posted 4/11/2009 1:54 AM (GMT 0)

 Hi CaPCa, I agree with you, I read walsh's book ( tough long read, better than a sleeping pill) as well as other data I mentioned in a response to a thread on cryo focal treatment clinical trials. I agree, from what I have read and seen published it is pretty clear that the cancer is multi focal even in the lowest grade cases. However, an interesting thought is that if the agressive tumor burden is removed, maybe one can live with the less agressive stuff. Lots of guys die from other causes late in life before the cancer gets to them which is supported by autopsy. So, maybe the trade off between quality of life and risk is worth it for some, especially if the cancer is lower grade and not extensive, hence cryo focal therapy etc etc. I gotta talk to those doc's and see what their take is on the multi focal issue. maybe someone here knows.

 For me, quality of life is more important than longevity to a point, so for those who feel that way I guess you gotta roll the dice. the good news is, ours sons will probably not have to deal with all this  if they  should ever encounter this horror show.............bob

Posted 4/11/2009 3:46 AM (GMT 0)

Bob,

It's good to hear that you are carefully weighing all pros and cons to each treatment. PBT is an especially interesting alternative to radiation or surgery. Since I was only 44 when diagnosed and genetically can expect a long lifespan (fingers crossed) I wanted to go with a proven long-term cure. I also liked the idea of the wealth of information that the final pathology gives when the prostate is removed. The one thing thing the PBT lacks, as I understand it, is a really long track record. Based on my own personal experience, I would say that a wet orgasm should be very low on your list of concerns. During normal intercourse, I don't even notice at orgasm. Unfortunately, it is not discussed much by the docs. In addition to the multi-focal issue I brought up, I would also ask questions about targeted cryo if the area of treatment is anywhere near the nerve bundles. Traditional cryo that freezes the entire prostate is notorious for resulting in ED - something like 90% of the cases. It just shows you have the nerves don't like the cold.

CaPCa

Posted 4/11/2009 4:39 AM (GMT 0)

rsilver said...

Hi CaPCa, I agree with you, I read walsh's book ( tough long read, better than a sleeping pill) as well as other data I mentioned in a response to a thread on cryo focal treatment clinical trials. I agree, from what I have read and seen published it is pretty clear that the cancer is multi focal even in the lowest grade cases. However, an interesting thought is that if the agressive tumor burden is removed, maybe one can live with the less agressive stuff. Lots of guys die from other causes late in life before the cancer gets to them which is supported by autopsy. So, maybe the trade off between quality of life and risk is worth it for some, especially if the cancer is lower grade and not extensive, hence cryo focal therapy etc etc. I gotta talk to those doc's and see what their take is on the multi focal issue. maybe someone here knows.

For me, quality of life is more important than longevity to a point, so for those who feel that way I guess you gotta roll the dice. the good news is, ours sons will probably not have to deal with all this if they should ever encounter this horror show.............bob


Your not taking into account the 3D mapping biopsy. Instead of 12 cores it can be anywhere from 30 to 90 depending on gland size. I had 45. The old standard biopsy just checks for cancer hit or miss. The mapping does just that, creates a 3d map pinpointing the tumor. If there's too much you need more aggressive radical treatment. Those who are found to have too much after said biopsy cancer is then upgraded in numbers similar to the upgrading after surgery and full gland biopsy. Besides if there is any missed you're back where you started with all option opens.... additional TFT, radiation, sugery...

AS far as the nerve bundles. It depends how close is the cancer to them. In the one video it states a 90% regain their potency soon after treatment. I did after a couple of Viagara to "kick start" it literally up again. Full cryo, like radiation seeds are meant to destroy the entire prostate. This is targeted, with far less argon gas used and only in a small area. Areas close to treatment are also warmed during cryo to protect them

watch the video below

http://online.wsj.com/article/SB123845699393571631.html#articleTabs_video%26articleTabs%3Dvideo



Walsh's book while good is quickly becoming dated.
Posted 4/11/2009 4:48 PM (GMT 0)

All good points. I would summarize my concerns and comments as follows:

1) Preserving the ability to produce semen should be low in priority. Quality of life issues should take high importance in treatment selection, however in general the ability to ejaculate does not affect quality of life. Certainly, there is a bit of a sense of loss and being "different", but I have found this to be minor.

2) Being treated for PCa is serious stuff, regardless of the treatment. Even if there is a "Plan B" were a chosen treatment to fail, the risk of this should not be taken lightly. Even with the recent study and popular news about "overtreatment", how many men on this forum would think they have been "overtreated"?

3) In all honesty, I am somewhat of fanboy of robotic surgery. In my particular case, I had an amazing recovery, which I attribute to my relatively young age, one of the best PCa surgeons in the world, and luck. I guess I might feel different had the outcome not been as good.

CaPCa

Posted 4/11/2009 7:38 PM (GMT 0)

Realziggy, I understand better what they are doing with TFT after reading your post. If I understand you, they do a very large number of samples, map the prostate using much more data than a standard piopsy, and then depending on status you may or may not be a canadate. Correct me if I am wrong.

I understand you had this done at CU Med center. could you recommend a doc there  I could talk to re: this procedure. Its worth it to take a look especially since they are right here.

do you have a thread following the process start to finish? thanks for your help.

CaPCA, your summary kinda wraps this up. thanks for your thoughts too. I guess I am hung up on all the side effects, and am trying to find something that has a high probably of leaving one with something.  I am in no hugh hurry and will up date as I find out more after meeting docs. thanks again........bob

Posted 4/11/2009 8:43 PM (GMT 0)

rsilver said...
Realziggy, I understand better what they are doing with TFT after reading your post. If I understand you, they do a very large number of samples, map the prostate using much more data than a standard piopsy, and then depending on status you may or may not be a canadate. Correct me if I am wrong.

I understand you had this done at CU Med center. could you recommend a doc there I could talk to re: this procedure. Its worth it to take a look especially since they are right here.

do you have a thread following the process start to finish? thanks for your help.





CaPCA, your summary kinda wraps this up. thanks for your thoughts too. I guess I am hung up on all the side effects, and am trying to find something that has a high probably of leaving one with something. I am in no hugh hurry and will up date as I find out more after meeting docs. thanks again........bob

Ok I bumped up the original thread. It's the TFT redux one. My first post has the 4 part video special by channel 7's Mike Landess This is when I first heard of TFT. Since you're local by all means get an opinion from the CU doctors. Landess had Dr Crawford the head of the CU Urologic Oncology dept as his doctor but all his cryo and mapping biopsy was done by the head of research Dr Barqawi. Dr Barqawi was my doctor. He also appears on the onemedtv site as one of the later interviewed physicians.
Posted 5/29/2009 1:44 AM (GMT 0)
I was diagnosed just over a year ago: psa 4.8, Gleason 7 (3+4), 7 out of 12 samples positive (confirmed by 3 labs). I went through proton beam therapy at Jacksonville in June/Aug '08, 41 treatments of 2Gy apiece. In terms of side effects, I had to start taking Flomax part way through treatment because of difficulty urinating. Ultimately I took 2/day. Shortly after starting them, I began to have retrograde ejaculation. I had not experienced any ED, and we had sex 2-3x/wk during treatment. I must say, the retrograde ejaculation bugged me. After treatment, even though I stopped the Flomax, I have never really ejaculated since. I have an orgasm that feels like always, just nothing comes out at the time. Finally a clear liquid (which I think is pure sperm) oozes out a bit.

Also, at about 3 months after treatment, I began to have some ED, so my family doc had me try Cialis which works great. Hopefully my nerves will regenerate so I won't have to take it, but who knows. I have read of many guys who have had proton (including Bob Marckini) who have dry orgasms. I think that is ultimately more common than not. It still bugs me.

By the way, I am almost 65, so I assume the guys who still have some ejaculation are much younger. I could be wrong.
Posted 5/29/2009 6:30 PM (GMT 0)
This discussion of alternate treatments is great reading! It's an exciting time for new PC "diagnosee's".

My first choice was HIFU, but my prostate was too big. All the other numbers were great. Second was Proton Beam at Loma Linda, but getting on the list for evaluation involved time I didn't want to lose and I live a long way away (Boise). Everyone tells you that you have plenty of time to make your treatment decision, and that is probably true -to a point.


I wound up with what was the best option for my situation (which was driven by my 89 gram prostate to some extent). I found a crackerjack surgeon and wound up with a great outcome from a Da Vinci RP, dry the day after the catheter was pulled, and ALMOST no ED complaints. I think I could get by easily now with just ED meds like viagra or cialis, but my wife has become a "pump addict".

The beautiful thing about RP is the knowledge you gain almost immediately about your future prospects. They either got it, or they didn't, and if they didn't, you can take it to the next level. If they got it, you're done. My mother celebrated her 90th birthday last weekend. I really didn't want to have to re-visit this PC thing again when I was 80.

The big negative with RP is the outcomes are not as consistent as I feel they should be. I think surgeon choice is paramount, and warrants as much effort as choosing the treatment option. I believe the robotic option offers a lot of advantages to the surgeon, but it's up to the individual surgeon to make use of these tools. I think this is particularly true with the nerve sparing and bladder re-attachment parts of the procedure.
If he's not motivated to do the best job possible here (and it's time-consuming and tedious work), he won't, and you will be the loser. This is not a time to feel obligated to a "nice guy" urologist. It's your prostate, not his. Find the best!

There are big differences in surgeon skill levels and motivation. Any surgeon is going to get your prostate out. A great one will preserve your continence and potency as well.

The great quality of life stories you hear from the HIFU and proton beam people is a big enticement. I would have rolled the dice if I could have. I couldn't, didn't, but still got lucky. Choice of surgeon and surgery option was the key for me.

Of course, the one universal complaint is no ejaculation. However, I have gotten used to it, 6 months post-op, and it's one of the trade-offs. The guys who have a little left are the lucky few.

I'm more and more convinced that a lot of this baggage we carry is psychological, and we just have to get past it, as we got past the PCa. It's human nature to want something more, that's what got us where we are as a species.

Thanks to this forum, there is outstanding advice, anecdotal experiences, and other resources that help someone newly diagnosed help make the right treatment decision. I don't think most of use get this from our doctors. Just knowing that everyone else endures similar post-treatment problems is a big relief too.

There's a thread a few pages back about "prostate transplant". It's pretty funny, especially the post about the Jarvik artificial prostate with hot fudge ejaculate.
Posted 5/31/2009 9:17 AM (GMT 0)
Bob I will put my two cents worth in as well. I also have retrograde ejaculation but like other posters here I concur, that whilst I lost the messy bit, the intensity climax has substantially improved to the point where I have to say to myself that is enough. It was weird at the beginning, but now some 15 months post EBRT and a TURP, my wife and I are very satisfied.
Posted 5/31/2009 3:12 PM (GMT 0)
When you say it is more intense and long lasting, what do you mean? What I have found is that after the initial ejaculation, I feel "warmer" inside, which I assume is the retrograde ejaculation thing. And that lasts for a bit. Is that what you are talking about? But I then do have fluid that oozes out as well.
✚ New Topic ✚ Reply
12