Prostate cancer: Hi my name's Sarah and... - Advanced Prostate...

Advanced Prostate Cancer

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Prostate cancer

sarahmj profile image
35 Replies

Hi my name's Sarah and my partner was diagnosed with prostate cancer 6mnths ago. He has seen 3 consultants and they have all said he needs to have treatment but my partner is worried that he won't be able to get an erection again and is reluctant to have anything done.

I would like to hear from anyone who has gone through or is going through this side effect of treatment. Thank you

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sarahmj profile image
sarahmj
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35 Replies
wolf2gang120 profile image
wolf2gang120

I had radiation treatments and hormone trestments.......yea it does ruin your sex life but I'm still alive 4yrs later

sarahmj profile image
sarahmj in reply to wolf2gang120

I hope u dont mind me asking but do u still feel pleasure even though u can't have sexual intercourse. My partners worried he will feel nothing. Sorry to b so personal but the only people that can help with his fears r those that have been through or going through the same side effect of treatment

wolf2gang120 profile image
wolf2gang120 in reply to sarahmj

of course....pleasure is what you make it.......but you may have to be very tolerant of his feelings

sarahmj profile image
sarahmj in reply to wolf2gang120

Hi. I have tried to support him I've even spoken to the Macmillan team to get their advice, they said that they didn't think I could do anymore than what I've done but I have failed....he saw consultant yesterday, he still hadn't made up his mind what to do so asked 4 active surveillance a bit longer they refused him this saying he needed to have treatment then signed him off

What can I do now ? I'm so scared 4 him

wolf2gang120 profile image
wolf2gang120 in reply to sarahmj

In the end its utimately his decision on what to do........I actually left my girlfriend so she would'nt have to deal with all this crap.....but that was my decision ...not hers...........its depressing at times......but it is what is...I'm about ready to go for round two...just got to keep fighting

adlerman profile image
adlerman in reply to sarahmj

Sarah-

He should at least get a shot of Lupron while he's making up his mind. The treatment team might consider giving him the extra time since he'll at least be getting his testosterone level down.

Baileyeap2 profile image
Baileyeap2 in reply to sarahmj

Pleasure never left. Have him to consider implant surgery.

Julesaxon profile image
Julesaxon in reply to sarahmj

Sarahmj please allow me to be equally personal in my answer to your post and how my wife and I overcame the impotency brought on me by prostate surgery and radiation. Yes we could no longer have intercourse but that did not mean the end of our sex lives. through sensual use of our hands and mouths we were able to achieve sexual satisfaction equally as good or, in my case, even better than during intercourse.

However, testosterone is food for cancer so even 10 years after I had my prostate gland removed my PSA kept going up to the point where I was put on Hormone Therapy, which my Urologist described as chemical castration. It did take away my testosterone, libido etc and was the end of my sexual life. But I am still living and now my wife and I enjoy each other in so many other ways.

Jeff54 profile image
Jeff54 in reply to wolf2gang120

Your so correct about it ruining your sex life but there are other ways to please a woman! I had Radical Prostatectomy 0n February 28 2005 36 days of radiation treatment 2 and a half months of chemotherapy and 3 years of Hormonal Therapy! And I have been through hell and back. My cancer is in remission now! The most important thing is to be positive no matter what happens! Jeff54

Baileyeap2 profile image
Baileyeap2 in reply to wolf2gang120

Life is great and there are alternatives such as implant surgery.

Chubby42 profile image
Chubby42

Hi Sarah Im 54 and have have just been diagnosed the same score, ive been told my cancer is 6 to 12months from breaking through the prostate wall which would not be a good thing as it could then spread, I have also opted for removal as I figure I would rather live longer than having an extra year of normal sex.

sarahmj profile image
sarahmj in reply to Chubby42

I hope u don't mind me asking but do u still feel pleasure even though u can't have sexual intercourse? My partners worried he will feel nothing. Sorry to b so personal but the only people that can help with his fears are those that have gone through or r going through the side effect of treatment.

maack1 profile image
maack1

In order to provide logical advice, need to know more about your partner's diagnostics. He should have or get his own copy of the pathology report of the extent of his prostate cancer. Need to know how many tissue samples were extracted; of that number how many samples were found to show evidence of prostate cancer; of each of those samples showing evidence of prostate cancer need to know the location from which they were extracted, the Gleason Score assigned to each, and the percentage of cancer found on each. Also need to know if the report identified high grade prostatic neoplasia (HGPIN) presence. And finally, need to know his current PSA level and if he knows or can ask his treating physician the volume/size of his prostate gland. With this information I will have a better idea of his status in order to comment. As to erectile dysfunction, much depends on the extent of his cancer, his age, his current ability to natural erections, if he regularly uses one of the PDE5 inhibitors (Viagra, Levitra, or Cialis), if he is covered by health insurance. The treatment he eventually chooses as well as the experience and expertise of the physician who will administer the treatment can make a difference as to post-treatment erectile function, though for surgical removal or radiation there will likely be a period of erectile dysfunction capability that depends to some extent on his own participation in the rehabilitation procedures that helps that return of function. If interested in my prostate cancer, advocacy, and mentoring background, (my “credentials” if you may) please visit the following theprostateadvocate.com where you can also click on the menu word "Observations" and access over 200 papers I have either authored, compiled, or posted from medical friends regarding prostate cancer, recurring prostate cancer, treatment options, treatment of the side effects that often accompany most all treatment options, and more.

sarahmj profile image
sarahmj

I WILL get the information you need when I speak to him I do know that on left side of prostate 5% is cancerous but his right side is 70% cancerous because of this the consultants all reccomend he has treatment. He has a small prostate 43cc volume. Unfortunately he suffered caudia equina 10yrs ago and struggled for 18mnths to get some sexual function back. The consultants have said because of the nerve damage already caused by caudia equina he won't be able to regain any sexual function. He cannot face the thought of having no sexual function so wont, at this time, go ahead and have treatment.

RandyT profile image
RandyT

Ok. I've been through this for the last seven years. Many things can be done after treatment whatever he chooses. The main concern is to treat the cancer! After that it's a roll of the dice but don't worry. Many guys will get their etection back in a year or two. Some will not. There are pills, shots and a vaccum device that works on almost everyone. Yes his orgasams will feel the same. For many guys they last longer and are more intense than before. Mist guys can use pills after treatment. I'm in a support group of about 20 guys and everyone can have sex. Most use pulls. If that doesn't work the vaccum pump will. I got tired of using that after three years so I had a penile implant put in. You pump it up and you can have an etection all day if you want. There is a operation to install it. That's a last resort. Just remember that getting the cancer is first. You can cope with everything else after. My doctor held out both hands and said " there's sex, and life. I know which one I'd choose! " good luck.

sarahmj profile image
sarahmj in reply to RandyT

Thank u for your honest reply I will get him to read all the replies I get in the hope he will get the cancer sorted

RandyT profile image
RandyT in reply to sarahmj

You're sure welcome. This crap is very scary to a guy especially if he thinks it will effect his penis. It might and it might not. It just depends on all his numbers and what treatment he has. There is always a way to deal with it later.

sarahmj profile image
sarahmj in reply to RandyT

Hi. I don't know what to do, my partner decided he would like to continue with active surveillance n requested another biopsy perhaps a template biopsy as this is more accurate as he still couldnt decide on treatment, he needed a bit more time but the consultant refused to do this and as my partner couldn't decide on treatment he's signed him off. I'm so worried as now his cancer is not going to b monitored, what can I do? Should he insist that they continue with active surveillance as surely the hospital can't dismiss him like that especially as they know he's got cancer?

Scmaggi profile image
Scmaggi in reply to sarahmj

As he already had a biopsy that found cancer there is absoloutly NO reason to get another biopsy as it will only tell you what you already know: He has prostate cancer. Your consultant was right to deny a second biopsy. Biopsys have there own risks.

wolf2gang120 profile image
wolf2gang120 in reply to RandyT

you have to have really good insurance to really get all those treatments.........the average person like me ; still cant afford it all....wish I could

jshp2013 profile image
jshp2013

With the development of technologies, he can improve his ambition. One thing is sure that living a healthy life is more important to a pleasure. First try to correct the health hazard then you will decide about the next stage of pleasure.

chascri profile image
chascri

The percentage of men who experience impotency and/or incontinence is very high ( 60 to 80 percent as I recall) regardless of the treatment selected. Anybody dispute this?

adlerman profile image
adlerman

He has to make a choice- get rid of the cancer or keep having sex until the cancer kills him. They do have penile implants if the treatment leaves him impotent. He should at least get a shot of Lupron to keep it from getting worse while he makes up his mind.

Cancer-Warrior profile image
Cancer-Warrior

Every one has a right to make their own choices. But befor you do you should visit a couple of guys at EOL from Prostate cancer or any cancer. It is ugly, hard, and unbelievable painful.

erjlg3 profile image
erjlg3

I wouldn't change a thing as long as my husband was able to live. More important.....he wouldn't either with the choice being death. We have a very loving relationship. Even though it is difficult he says his orgasms are much more intense. Once you slow down sex wise.....the love for each other continues to grow. Its just not important when the love in your life...life's on the line. Would he really rather die? He can try some things suggested and there are other ways. Life is so much more important. Most sincere.

Jackie

Pennysue1 profile image
Pennysue1 in reply to erjlg3

As a woman I totally agree - love his company still after 26 years

Jeff54 profile image
Jeff54 in reply to erjlg3

Your statement is so true! When I was diagnosed with Prostate Cancer in February 28 2005 I did not really care to much about the sexual aspect of my surgery! I just wanted to live! and I am! Thank God Im alive!

I got my diagnosis a month and a half ago. I'm not fooling around -- I am being steered toward hormone treatment followed by radiation. I am going for a 2nd opinion tomorrow as to whether surgery is possible after prior TURP (roto rooter) prostate surgery. I am leaning toward radiation. I've read that ED doesn't happen immediately after radiation but could develop five years down the road. I'm not a doctor. Sorry to be rude, but tell your partner to get out of denial and take care of himself. There are books available and of course message boards like this one.

de-luke profile image
de-luke

I had a radical proctectomy in 2011, radiation the next year. Injection directly into the penis shaft of Tri-mix makes it very hard. I know injecting directly into the penis sounds PAINFUL. But after all the other pain PC patients go through it is worth having a good shag. :) But do not over do it!

Sloan Kettering mskcc.org/cancer-care/patie... has doctors for this treatment. I also take about 250 mg viagra about two times a week. I get the syringes, no charge from a harm reduction center (don't mind the junkies) on Allen St and Broome St in NY City.

Pennysue1 profile image
Pennysue1

Have treatments - a lot more important than an erection - don't cut your life short

Attitude67 profile image
Attitude67

Back in the day, 1998, I had the Nerve Sparing procedure, then a radiation wash out after biochemical failure, then a combination of intermittent Lupron, prednisone, and naturopathic supplements to reduce inflammation. Im still kicking long after they told me I might not make it with an original G-11.

Right now the least invasive treatment with Intent to cure that spares the nerves that operate your sex package is HIFU. It is a two hour procedure after which the patient wears a catheter for several days so as not to interrupt flow. It is an outpatient procedure.

For more information go to Keck School of Medicine at USC on the West Coast and ask for Dr. Gill. They will refer you to a specialist in your area if you are out of their service area.

Don't be afraid of urologists they are often horses asses. My first one managed to get himsel shot by a patient thanks to his arrogance and eagerness to castrate him.

Take a balanced approach. Change you diet. Reduce inflammation and control any other diseases. Seek out a member of the American College of Alternative Medicine to assist you with these measures and introduce yourself to Homeopathic and Naturopathic remedies.

Go to a major Tertiary Care Center with modern, knowledgeable, physicians and seek the least invasive treatment in your case. Every Urologist that is competent can perform a prostatectomy. Age is not an asset to surgeons. Find one with about 10 years of experience who isn't seen sneaking out for a cigarette. Find one whose back doesnt ache. One whose hands don't shake. Never trust one who isn't performing prostatectomies many times each month.

Always ask operating room nurses who is the best or whether or not yours has any respect for tissue or is a hammer handed, loud mouthed fool. Do not be afraid to get a second, third, or fourth opinion! Make sure you get a copy of your pathology report for future reference. Make sure you find an Oncologist afterwards who treats PCa patients. They are more attuned to prolonginging the lives of PCa patients, more willing to change tactics, and often won't compromise your health for short term gains.

wood1919 profile image
wood1919

I was diagnosed only three weeks ago with aggressive, localized prostate cancer. My urologist recommended that I go to Johns Hopkins and also told me that his belief, based on my type of cancer, Gleeson score of 9 and other factors, was that I should probably have radiation and hormone reduction treatment. A Google search led me to a treatment that is used by PENN Medicine, the Univ. of Florida and several other centers, called Proton therapy, a form of radiation that is said to carry a much lower risk of the complications your partner is concerned about. I am scheduled to start the hormone reduction next week with the plan, if necessary, of following up with proton radiation treatments. Meanwhile, I have just read articles, that I was prompted to find by comments on this site, on the findings of a Dr. Denmeade, with Johns Hopkins, that high testosterone injections given to men who have had testosterone reduction treatments, and timed right by a medical expert, has reduced and even cured prostate cancer in some of them.

Dr_WHO profile image
Dr_WHO

While there are some possible side effects with treatment that hurt being physically intimate the worce side effect comes from doing nothing. That is the loss of time. Time to be close with the one you love. Prostate cancer never gets better on its own. The sooner it is treated the less the side effects will be. The longer he waits the worce it will get. If he waits to long being intimate will be the least of his worries.

Baileyeap2 profile image
Baileyeap2

Yes, had the prostatectomy and impotence as a result but then had implant. Was a little awkward at first due to mind control of erections were great in the past. Now it's pump it up as pleases.

Jackpine profile image
Jackpine

After my radical prostactamy I still had libido although reduced and even after 36 fractions of radiation was still able to have and erection but started to use viagra which improved erectile function. I needed to go on Lupron after 2 years and that does kill the libido, however my wife and I still enjoy being intimate and are relationship has grown through this battle.

We deceided early on that being together for as long as we can was more important than sex. We still miss it but, we show our love for each other in other ways ( taking walks holding hands, snuggling in bed, etc.).

The treatment can be difficult but it’s worth it to be with the ones you love.

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