Chemo & Radiation induced sexual dysfunction

  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 said:

Neuropathy

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

   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 .

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 said:

Thanks Jan and Dave

   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.

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 said:

Sorry Ron, that's a lousy

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.

    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.

beaumontdave said:

The other thing that all this

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

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.

Trubrit said:

I can always count on you, Helen

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

 

   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.

beaumontdave said:

I can relate to a lot of

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

       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 said:

side effects

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!

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.

Helen321 said:

Hi Danker! Funny I say the

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.

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