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Chemo & Radiation induced sexual dysfunction

Trubrit's picture
Trubrit
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It is not something that is talked about, is it.

A friend of mine, who has finihsed treatment, told me that the chemo has left him unable to get an erection (my words, not his). It is not a side effect that I had heard of. 

I myself was 'damaged beyond repair' by the radiation. I was warned this could happen, before I went into radiation and prayed it wouldn't happen to me. 

I know that certain things are hard to talk about, but I do feel that more warning of what can happen, helps, at least a little, in being prepared. 

Sue - Trubrit

Lovekitties's picture
Lovekitties
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Sexual complications or disfunction can certainly be caused by radiation to the pelvic area.  I have not heard of chemo causing the same, but that doesn't mean it can't happen.

When it comes to quality of life, it seems to me that all topics should be discussed, when determining treatments.  I suspect, but have no facts to back it up, that some doctors will not offer such information for fear the patient will then determine not to have said treatment. 

When dealing with any type of cancer, straight talk and all available information are key to our survival.  If a doctor can't do that, one needs another doctor.  If the patient can't handle that, then they need to take a hard look at their life priorities and be sure they would trade one for the other.

Marie who loves kitties

Helen321's picture
Helen321
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I'm just now catching up on this thread.  Truth be told, if I knew what I knew now I NEVER would have had the APR and ostomy.  The doctor did not give me the slightest clue how bad life would become.  Three years of depression. I'm finally now seeing the other side of things and starting to fully accept my new body.  I don't really remember what going to the bathroom feels like until I get phantom pains which are so rare now.  I'm not even sure the doctors know some of these things, they've never asked me about any of it, never said and what are you experiencing physically and emotionally.  There is a disconnect among the oncologists, physical therapists and psychiatrists.  They each deal with their own nitch and don't deal with the patient as a whole.  I had the choice of skipping the surgery.  The surgeon said the risk was extremely high not to do it so I went for it.  Being cancer free and knowing what I know now, it is easy to say I would never do this again and wish I hadn't.  Of course, easy for me to say with hindsight. When you're in the battle, the anxiety is so high, once you're out as time passes you get back to mild anxiety.  I'm hoping eventually to have no anxiety.

ron50's picture
ron50
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  Chemo and radiation, when you are cut from sternum to groin and have areas of colon removed the focus of the surgeon is to remove cancer and unfortunately not a lot of thought is given to preserving muscles and nerves that support sexual function. I lost sexual function after surgery, my surgeon apologised but said he had more important concerns at the time. Unfortunately I have survived seventeen years so in my case it made a difference and likely was a factor in my wife leaving me. Ron.

Trubrit's picture
Trubrit
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My friend believes that he is experincing neuropathy. I know it is called peripheral neuropathy, but I did not think (beign a woman, I have never given it much thought) that it might extend to the Penis. 

I have suggested he talk to his Oncologist. It may not be a permanent affliction. 

I also think that our mind can play a large part when it comes to sexual function. I know that when I was diagnosed, during treatment and for a short period afterwards, the thought of any sexual activity just did not sit well with me. Basically, I just wanted to be left alone. 

Having a very loving and understanding husband, my heart goes out to you, Ron, if indeed one of the reasons your ex-wife chose to leave you was because of the loss of sexual intimacy. 

Even with the list of side effects that I live with, I would still chose treatment. I am just happy to be alive, and know that Chemo and that horrendous Radiation experience is why I am sitting here today, albeit damaged goods. 

I am grateful for those who are willing to have an open discussion of this, more personal part of life. 

Sue - Trubrit

ron50's picture
ron50
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   As you know I have a raft of problems stemming from chemo. The trouble is that there are few around except Foxy (Virginia from New Zealand) who were on levamisole mostly because it was banned for human use around 200-2001. Virginia ,like me, suffers from auto-immune problems that they cannot put a name to. I have suffered severe peripheral neuropathy from a short time after chemo therapy. I have been diagnosed with auto immune nephrotic syndrome causing protein loss up to 7 grams a day. On cyclosporine I maintain my loss at around 1 gram a day. I have just seen an endo cronologist who believes my endocrine problems are also auto immune . My testosterone levels of a morning are 5.2 , the norm baseline being from 8-18. My nephrologist has tested me for auto-immune hepatitis and has found I vary from mild to moderate. I have medication induced type two diabetes (prednisone ,75 mg a day for nearly two years) and I have moderate premature ventricular and atrial ectopic heartbeats (10,299 a day at last count). It has cost me over a hundred thousand dollars in specialists since cancer and not one has been able to give me a cause or suggest a treatment for any of them except my nephrologist who freely admits that he does not know what caused my kidney disease but has been lucky to find a treatment that has kept me alive, He freely acknowledges that most of my auto immune problems are the result of the chemo I had and he also knows that the treatment he is using is highly likely to cause more cancer including skin and myeloma as well as other blood cancers.. My wife did not leave only for the lack of initimacy she just got tired of dealing with non stop illness. Ron .

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JanJan63
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Ron, I feel so badly for you. I've only been in this for two years but my husband has been amazing. I don't know what I'd have done without him. Do you have a good network of friends that help you out during bad times? 

ron50's picture
ron50
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   I guess that I don't have much to complain about considering the number of our friends here that have not made it. I live on my own now , have done for ten years. I don't see much of anyone anymore. It does not worry me much tho at times I do feel a little scared. A year and a half ago I started waking in panic because I could not breathe. Actually I could breathe I just was not absorbing oxygen. I had some sleep tests done . In normal sleep I had mild to moderate apnea. When I went into rem sleep my o2 levels dropped below 80% . They were going to take my drivers license off me unless I went on cpap. I have been on cpap for over a year now and it has helped. My worsening testosterone levels are causing me problems because of constant fatigue. I still work four days a week but on work days I have to have a sleep when I get home . I finnish up sleeping on my days off just to try to get ready for next weeks work plus I have to do my housework. My son and daughter live thousands of miles from me so I never see them. None of my friends from before cancer contact me any more so I figure I am probably better off alone , it causes me less stress. Ron.

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beaumontdave
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Ron, oddly the one benefit of this 8 year "journey" was dropping 40 lbs. after the initial colectomy. Before that, I was getting heartburn and snoring so much I thought I would have to go on the CPAP. I read that those smoking pot gained a health advantage from the deep inhaling and exercise of their lungs. I don't know if thats true, and sadly pot doesn't work for me, but I make a effort to walk when I'm not working. And when I walk, I breathe as deeply as I can, like I was taking a hit, just to work out the lungs. I don't know if that's useful, but so far it's working for me.

 

 

 

 

 

 

 

beaumontdave's picture
beaumontdave
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The other thing that all this crap has done is make me a much more solitary man. Small talk seems silly to me, so if I'm a having a beer at the local pub/bar, I have to check my tongue or every conversation leads to the meaning of life. It turns out most folks aren't at a bar to debate the meaning of life, who'd of guessed? I worry that I'm not telling the 20yo son and 15yo granddaughter what matters in life, wanting to share what I've learned in case I run out of time. So, I imagine I come off as over bearing and ponderous with them as well. We come into life and go out alone, and while we're here, we're always locked in the solitary universe of our mind, so I focus on my responsibilities and those things I enjoy, and worry little about tap-dancing to make others like my company, I'e got enough on my plate. Hang in there, buddy..........................Dave

Helen321's picture
Helen321
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I've come across the same issue.  Suddenly I find many conversations "stupid".  When I hear people complaining about standing on a supermarket line I want to say "oh shut up you have no idea".  Or when people my age (46) are talking about small things that I used to relate to while we're out at a bar I just think, wow who cares, there are bigger things in life.  It's hard to relate to people sometimes now.  I have to remind myself that they don't "know".  They're still in the "happy, I'm going to live forever" part of life that we don't get to be in anymore where small stuff still matters.

nateswife's picture
nateswife
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Really glad to hear that I'm not the only one who has become more withdrawn or less social since diagnosis and treatment. It's partly hard to concentrate when I'm listening to people because I always have something serious on my mind. There is also this feeling of being very different from people who don't have a life threatening illness. This quote expresses the feeling pretty well. A young woman named Rebecca Babcock said this in a film called "I am a Visitor in Your World." She had colon cancer and unfortunately has passed away.

"I've disassociated myself with you. You, as in the rest of our normal world. I don't belong there anymore. I'm not normal. I'm in another class now. And not the cool kids or the theater kids or the jocks class. I'm now a member of a society of people, I believe, who can't help but acknowledge that what we once were is no longer. And what we are now is in a completely bizarro, Twilight Zone reality that most can never even fathom."

Helen321's picture
Helen321
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I know you hate when I say this but you remain my hero.  You are an incredible person and have tolerated more than what most people can deal with and have done it with grace even if grace includes the ocassional throwing of objects=)  Even objects can be thrown gracefully.  That's my story and I'm sticking to it.

nateswife's picture
nateswife
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Ron, it is truly impressive that with the complications and effects of cancer & treatment, that you are still working. Wow! 

beaumontdave's picture
beaumontdave
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Sorry Ron, that's a lousy deal, and no fault of yours, the surgeon warned me that he would be close to the nerve controling erection and I might lose the ability. A week after being home I was scared of knowing, but woke up with a good reaction and the wife right there, so I got lucky. The change was what they call a retrograde ejaculation, it goes to the bladder, which since I was done making children turned out to be a benefit. But still, it's a hell of a thing to lose, while doctors are treating it like an afterthought. Just this damn disease taking one more part of who you felt you were.

ron50's picture
ron50
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    One of my health problems and probably the one i give the least thought to is neuropathy. I was sent to a neurolagist. I told him I had severe neuropathy in both feet and legs and wanted to know what caused it and how I could treat it. He did his tests and told me I had moderate to severe motor sensory peripheral neuropathy in both feet and legs (and left hand) . He did not know what caused so he could not treat it ,that will be $500.00 thanks.. I really cannot feel much from mid thigh down. At one stage after chemo , for three years, I was walking 50 miles a week every week. That is when the neuropathy started big time. It also shook some gallstones free of my gallbladder and I finished up with acute pancreatitis. I had my gallbladder removed and my doctor strongly advised me against walking so much . He was very worried I would damage my feet and not feel it. He worried about me getting gangrene and losing toes. I became unwell again and he did an endoscopy and his primary dx was stomach cancer. He took biopsies and they all turned out to be ulcers. For a while he thought I would lose my stomach just from the ulcers. I have been taking 80mg of somac a day ever since. Unfortunately when the nephrotic syndrome showed up my then neph thought it was minimal change disease and hit me with 75mg of prednisone a day for well over 18 months. Not only did it cause type two diabetes it weakened my spine and I lost 7cm in height and a lot of calcium. I find it hard to walk without pain or to excercise pain free. I cannot take 90% of pain killers because of my kidneys so in their wisdom my docs put me onto oxycodone and built the dose up tp 80 mg a day.I was still in severe pain and it was getting worse. My new gp said it was hypo-algesia-the oxy was now causing more pain than it stopped. I am in the middle of a 32 week taper to get off the rotten stuff. Everytime I try to do too much strenuous activity I am bed bound for a week so I have learned to do what I can when I can and not exceed my capabilities. It is a sad lesson to learn that your body will no longer let you do a fifth of what it used to. I am 65 and I believe I should still be near my prime but I realise I am a sad shaddow of it. Such is life. Ron.

Helen321's picture
Helen321
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Well I'm not really shy on the subject because well I've had over 100 people look into my body, rooms full of people sometimes and when you poop into a bag and have no anus, there's not really much left to be shy about.  There are people called "sex therapists" who can help with this and yes I had to go to one. I was very fortunate that the radiation did not destroy my vagina, why would it, then having my anus removed couldn't have destroyed it instead!  lol  Anyway, the sex therapist gave me all kinds of medications and gadgets and those have helped immensely.  She said almost everyone can be helped, it's the range of help that is the issue.  More scar tissue = less likelihood of progress.  Thankfully I didn't have a lot of scar tissue, I've never been one for much scar tissue, one saving grace.  Anyway, she also sent me to a physical therapist.  Yes a physical therapist for the vaginal and cervical muscles to improve, who knew. It is a bit awkward, you get over it, you have no choice. What I have learned is that women going through normal menopause go through the same things.  The vagina must be maintained by all (who have one anyway).  Radiation just makes things immensely worse.  So you have to work super hard with estrogen pills (vagifem) or creams and even physical therapy to have some semblence of "normal" (there really is no such thing after cancer but we'll call it that, having my anus removed made the vagina severely crooked).  All women who have gone through menopause should be on very low dose hormone pills or cream (topical and non cancer causing), it is what keeps the vagina from "drying out and having severe tissue breakdown" as my doctor put it. Without these pills and creams, even people without cancer will suffer tissue breakdown.  You also must use what my doctor calls "vaginal lotions" either prescription strength or specific lubricants (I can't think of what she gave me offhand but it was very specific) just as you would lotion and arm or a leg. One kind in the morning, another kind at night, both with specific purposes.  I won't get into dilaters but if you're having an issue, you need those so you get the gist. Doc says it's imperative to all women and yet it's not discussed.  Cancer patients who have had radiation need to amp up the program.  She said we really do need to talk about this more for everyone, not just cancer patients so good topic. 

Trubrit's picture
Trubrit
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for a good response and exlanation.

I know there are folks who would, first, like to be at least aware that Chemo and radation can damage our sexual preformace/desire/ability. Unless we can talk about it, they will find out the hard way (as I did) and it does come as a bit of a shock. And second, people will appreciate that for some of us (women at least), there are things we can do to aleviate the problem or at least make it better.

I personally have no intention of using any kind of medication above and beyond what I need to keep me alive (I'm on Thyroid meds), and no amount of missing sex intercourse is going to induce me to go there.  I talked it over with my husband, he knows there are things out there to help me, but understands my reluctance to use them. Its been over three years now, and I think we're at a place where we can live without it.

Sue - Trubrit

 

ron50's picture
ron50
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   Helen I am really sorry for the mess cancer has made of your body and your life. I have nothing but admiration for the way that you live your life and your attitude to problems that most people just would not have the courage to endure. I wish world leaders would get on board with your attitude of "there is a problem, let's see what we can do to overcome it". Life is what it is for cancer survivors and you are one of my heroes of survival. Hugs ron.

 

   Sue , you are in my boat , It is seventeen years since I gave up trying . That does not mean giving in , it is just that the fear and embarrassment of trying and failing made me really think about that part of my life. Was it relly worth punishing myself for something that really was not my fault. I explained how I felt to my wife. I am afraid her reply was "what about me". I could understand that so I made it very easy for her to get out of our marriage and on with her life. She now regrets that we are apart but I have moved on and I will never let that area of my life hurt me again. I am really glad that you have a loving and supportive  husband, Hugs to both of you , Ron.

Helen321's picture
Helen321
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Thanks Sue. The problem is that it's not just a sexual issue. My reality is that that part of my life has come to an end for the most part. According yo the doctor, the problem is that over time, if not taken care of, the tissue breaks down and causes other problems which is actually a natural part of menopause. Add radiation and you get a lovely mix of woes Including the possubility of fistulas. So its worth discussing with a GYN oncologist. The doctor who helps correct it just happens to be called a sex therapist. She also helps with the mental that goes with the loss of function. My doctor and I had a discussion that all patients should be sent to a GYN oncologist as well as the Colo before surgery and especially when radiation is involved, not only during but after and yet we're not. My reply, well make it happen captain. Time for change starts now. It's illogical not to great all parts of the body affected by cancer. Even if treatment just means basic discussion of possibilities, options and consequences. 

Kazenmax's picture
Kazenmax
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Today was my second radiation treatment and afterwards I had a quick visit with the Doctor. In passing he quickly talked about side effects and quickly mentioned that I may have some "toxicity" in the area of my genitalia. ...and he walked out before I had a chance to ask just what the heck that means....

So I've already gone through menopause... and I don't treat myself for it and I occasionally enjoy sex with my husband. So what do I have to look forward to? What can I do to avoid this toxicity? 

Man....I was just getting to the point where I can handle the treatment and now this?

Ugh

beaumontdave's picture
beaumontdave
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I can relate to a lot of Ron's issues, I avoided the permanent neropathy, but due to the CMT[it's listed with the muscular dystrophies] I have to balance how much I'm on my lousy feet versus not getting sufficient exercise. Days I'm not working, I walk, but if I overdo it, I pay a big price. I learned a hard lesson about using opoids to treat sore feet and bodyaches. I had Oxy or Hydro prescribed after the surgeries, but being Cindy's caregiver, I had access to all sorts of powerful painkillers. It was too easy to pop a pill before heading to work, no high to it, just a vague, warm, fuzziness and less aches. I didn't think about dependency since I didn't do it every day, but I finally realized I'd best stop it. Two days later, I felt like I had a mild flu, an inability to regulate my body temperature, and finally about three days of wanting to crawl out of my skin. I couldn't sit still, I was constantly irritated. After all that I told my GP I didn't want any opiate stuff again, so now I take Tramadol in the low dose, and use it sparingly. I don't envy you having to come off the oxy Ron, even with careful tapering it still must be a rough road. As far as sex goes, after my diagnosis, I kept making an effort because it didn't seem fair to quit on Cindy, even if I wasn't very motivated. Sixteen months later, when she was diagnosed, sex ended, and I understood, losing half your hair, big surgical scars, and radiation, then later chemo, all make it very hard to feel passionate, so cuddling up more than sufficed with us. Menopause probably slipped in there, somewhere too, but with all that stuff going on I couldn't say and Cindy never did.    Anyway, it's good to talk about these sorts of issues here. With "unaffected" folks I get a glassy-eyed stare and pitious looks that seem to wonder why I want to dwell on or even talk about such things........................Dave

ron50's picture
ron50
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       I tend to think of us more like combat veterans. We have survived but we have taken a lot of hits along the way. I have no doubt it has destroyed some survivors. I thought about it at times but someone always has to clean up the mess you leave behind so I figured it was best to just toughen up and deal with things as they happen.  You are right though it helps to have people around who understand not those who think they understand. As you can see I have been around this board since nov 2001. Not because I need it but it is sort of like home. Ron.

danker
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As I was reading the comments on this thread, I thought how people who never had cancer have no idea of what we go through!! I'ts just "OH how nice that you beat cancer." Such is lfe i guess!

Helen321's picture
Helen321
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Hi Danker! Funny I say the same thing. Interestingly most people don't even know what cancer actually is. I had to look it up when I was first diagnosed. I always related it to tumors and didn't get the cell aspect.

danker
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As I approach my 84th birthday,I find the comments almost humorous!  I cannot even remember  my last erection. LOL

Trubrit's picture
Trubrit
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As long as YOU stand erect, thats all that matters. 

HGUS!

Sue - Trubrit

Helen321's picture
Helen321
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lol Danker, you make my day all the time.  I would have liked to be saying something similar at 84, sadly I'm 46.  Thankfully, I have a fabulous personality if I do say so myself. As the saying goes . . .  If like throws you a lemon, cut that bad boy open and throw it at someone because life didn't also throw you sugar and water dummy.  Can't change what cards I've been dealt but I can accept them and move on with what I do have and I have a heck of a lot to offer . . .and I don't even have to stop for long bathroom breaks on road trips!  lol

beaumontdave's picture
beaumontdave
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Funny, Helen! I just wish I had time for a road trip, I keep hearing the clock tick, and there's all these things I want to see. Tick,tick,tick..................Dave

danker
Posts: 1262
Joined: Apr 2012

When you find the time--go on the road trip of your desires.  I drive a 5 liter Mustang because my oncologist said;"Be good to yourself."

Do it now! Be good to yourself!!!

sail69
Posts: 1
Joined: Nov 2016

Viagra, the little blue pills work for me. 5 years out and been thru part of lower colon removal after oral chemo and radiation a resection and 9 months of main line chemo every 2 weeks, 2 bouts with blood clots in my lungs so that now I am on daily blood thinners. After all that my erections were not very rigid until i tried Viagra and WOW. It is very pricey tho in the states, so I get mine at 1/10th the cost thru Canada. It is a generic but works just as good.

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