Question for women with rectal cancer

[Badass]

I am about to start radiation and worried about the impact on my sexuality. Anyone care to share how radiation for a rectal tumor impacted their functioning? Vaginal stenosis? Treatment for that?

Thank you!!

[Iwillprevail]

The jury is still out for me as it is early days, post all treatments. But this is what I can tell you. First...it threw me head-first into menopause several years before I would have expected to go thru....the sudden loss of hormones hasn't been favourable to libido for sure (then again fighting cancer probably doesn't put anyone in the mood!). Vaginal stenosis is a very real concern and all I can tell you is if you have access to a physiotherapist who specializes in rehabilitation of the pelvis, I'd make the call. They can assess stenosis (if there is any) and suggest rehabilitation strategies which could include the use of vaginal dilators to stretch things out. What everyone has told me is it is important to "get back in the saddle" so to speak as if one doesn't have sex, stenosis will get worse. I hope this helps!

[Phuong]

Yeah, it is kinda use it or lose it (for a while at least). I wish this had been discussed with me beforehand. I was told about the early menopause so that wasn't a surprise, but there was a loss of libido. I suggest talking to an OB/GYN who has experience with treating women with cancer. Since I didn't know about it, I wasn't prepared for it. Treatment ended up being topical steroids for a bit and later hormone replacement therapy. I know they have stretchers, but I didn't end up needing it. Preventive is definitely the better route to go if you can plan it. It was a painful "rehab". Lots of foreplay and water soluble lubricant was suggested, but I don't know if that made it better or worse for my DH.

[Jachut]

Well, sure, although I caused a lot of bad feeling here when I brought this up a little while ago - my point being that I think this needs to be proactively handled by doctors, surgeons and oncologists, as it was a very unexpected (and for a long time unrecognised) outcome of my treatment - and personally, far and away the most traumatic part of the whole journey. Some people felt that it was up to the individual to notify their doctors, that expecting doctors to be mind readers is unfair and unrealistic, but I reason that if I suffered so much in this regard, it cant be that unusual and therefore, it should be on their radar, they should be looking for signs and they should discuss it with their patients prior to it occurring. I think the younger and younger ages at which this cancer is occurring make this even more significant - not that older womens' sexuality isnt important but for example, if you're already menopausal that's one part of the equation already taken out.

This is what I found personally. Number one, menopause at the age of 43 was a highly traumatic experience for me. It was a brutal, surgically induced one for starters and medically speaking, I am still sorting out the issues - it took my female GP to recongise it, and prescribe HRT for me, but we're still thinking I also need testosterone supplementation as well. It has caused both physical issues - extreme fatigue, loss of muscle, osteopaenia (including a broken bone) and sore joints. Phsychologically, a lot of anxiety and depression (somewhat relieved by HRT) and great difficulty adjusting to my change in status - although it was rather bluntly pointed out to me that I'm old anyway and it was just around the corner - it was not just around the corner at all and my feelings on the matter are my feelings on the matter, valid and important. I am probably a rather vain person and my fear of becoming old, invisible and less "sexual" is very real to me. I need to ease into old age and appreciate its benefits as they become apparent, not have it thrust on me suddenly.

I've suffered a marked lack of libido and decreased enjoyment of sex - both physically and psychologically induced. I dont enjoy it that much, its nice, but just like having your back scratched nice, it doesnt feel like it once did. Its not in my thoughts, I dont desire it, I dont daydream or have fantasies anymore, its just not a part of my life at the moment in that way. I do it, but its mercy sex. I feel sorry for my husband. I also have the very real problem that my daily cluster of bowel movements happens nearly every night once I get into bed, from about 10 pm to about 2 am and I absolutely cannot feel sexy or confident in having sex when I know that is going on, its disgusting! Having a bag didnt worry me nearly as much.

My treatment itself - radiation, chemo and surgery has affected me in a really profound way too. Its not that I'm shy, because i had no trouble with pregnancies, having vaginal exams, delivering - I think because that was all part of my capacity as a woman - to be fertile and give birth. I found it (and find it) extremely confronting to have to deal with male doctors regarding rectal cancer, its such an intimate part of my body, yet its all so practical and matter of fact and I have extreme difficulty with being seen as a case - or as an asshole - as I put it without any validation of my femininity. Its not that I want to be seen in a sexual way by my doctors, far from it as I actually felt rather violated and traumatised by the whole experience - but its kind of, I dont know, dirty, unattractive, shameful - and before people go ballistic at that statement - that's my automatic, subconscious, inner most feeling, whatever you want to call it, not a factual statement about rectal cancer. I'm trying to be honest about how it all made me feel. How can you maintain a healthy sexual self image through something like that? Im kind of blown away by how hard its been because I didnt think I was an inhibited or uptight person at all, but it turns out I really am. Not in a sexual sense, but i now realise, I've grown up my entire life and never ever ever done a poo at school for example, I dont ever do it at other people's houses when we're visiting, I always have anxiety about being embarrassed over it when we share accommodation with other families on holidays - and now I'm in a state where I am definitely going to need to and am not going to be able to postpone it and its really knocked me for six.

All that stuff adds up to affecting very deeply how I feel about myself in both a social and a sexual sense and not surprisingly, I have got an awful lot of work ahead of me to repair and rebuild a healthy sexuality and sex life. But first and foremost we're hoping the testosterone may at least give me a libido, because at the moment, a book and a cup of coffee holds way way more appeal. Thank god for my very supportive, very patient husband.

[so-scared]

Jachut - I am not the patient here but I understand. It makes me so sad what all cancer does to/takes from people. Hang in there!

So-s

[weisssoccermom]

This is an area which I am very passionate about. Honestly, when I was dxd, it never occured to me that the treatments could or would affect my sexuality so when the rad onc brought up the subject - well I was floored. From my members of this board (and others) it appears that the whole subject is generally 'off limits' to the onc and the rad oncs. It may be that they feel in the 'grand scheme of things' that the problems associated with the treatments, specifically chemorad, just isn't that big of a deal - I'm not really sure. Thank goodness my initial rad onc, although a total a**hole and a buffoon did mention the vaginal & menopausal issues to me. It was through some very diligent research (mostly from women who had been dxd with anal cancer) that I became very passionate about this whole subject.

First of all, as most have mentioned, you're more likely than not to be thrown into menopause - and yep, 'thrown' is an appropriate word. Unlike more than 80% of women who undergo pelvic radiation (for a number of cancers - not just rectal), I did NOT enter menopause due to the treatments, but did still suffer from some of the same side effects - while I still had periods, I did notice that dryness and elasticity issues were very real.

Since most rad oncs don't talk about it (and frankly, neither does the onc or surgeon), most women aren't aware of the problems of vaginal stenosis - the scar tissue/adhesion build up in the vaginal canal that can and does close up the vagina - leading to real problems with sexual intercourse and/or pelvic exams. Anyway who has experienced scar tissue realizes that it isn't as easy as just 'stretching' it - scar tissue isn't elastic, it doesn't stretch easily nor is it as 'supple' as regular skin/tissue. The longer the scar tissue/adhesions are left to just 'be', the more difficult & painful it is to break the down.
The most common advice is to do nothing. Have the treatments (chemorad), rest, have surgery, rest, undergo chemotherapy and then go on with your life. The problem with this scenario is simple - you're looking at close to a year - do the math: chemorad treatments 6 weeks, another 6-10 weeks to rest, surgery with rest - 6 weeks, chemo 6 months - so far you're up to 44 weeks at the minimum. By then, well the scar tissue/adhesions in the vaginal canal is 'established' & this is when the doctors want to 'do something'. Sorry for the sarcasm - sometimes I wonder though what a doctor would think if they had to deal with this whole scenario???

My rad onc was really upfront about all of this - I had two options. First was to do nothing and then try to break the scar tissue/adhesions by using dilators. He was upfront with me not only about how painful this would be but how difficult it would be as well. Instead, he advocated trying to avoid the problem from the very beginning. Funny, but the women I met on the anal cancer site had all been told the same thing - why is it when you're treated for rectal cancer, the whole GYN aspect of this disease is just ignored?

I was told very specifically to use Premarin cream - 2 or 3 times a week both vaginall and on the external genitals. The effects of menopause will dry these tissues out (signifcantly) and Premarin helps to reverse this. In addition, due to the lack of estrogen, the vaginal tissues lose its elasticity - Premarin is also very good for this. If your rad onc or onc isn't amenable TALK TO YOUR GYN - don't be embarrassed about it. Finally, instead of waiting for the vagina to close up, I was instructed to (a) either have sex 2-3 times/wk OR use a large vaginal dilator (or a vibrator) to help stop scar tissue from forming in the first place. While I have to admit that there were just not times I wanted to have sex (although my husband quite willingly obliged LOL!), I kept reminding myself that these treatments didn't last indefinately and if I really was just too tired, the dilator was availble as well.

Whatever you do, PLEASE, don't just do nothing - you'll regret it much later. Just as radiation and it's side effects are cumulative, so are the vaginal side effects. You basically have two options - you can do nothing and try to undo some of the damage later on OR you can try to prevent the damage from occuring in the first place.

Jaynee

[triciah]

Oh, I wish I had known this stuff before! It's so good that your rad onc told you about this Jaynee.
I even brought sex up to my rad onc on my first visit because it had started to hurt having intercourse before I was diagnosed because of the position on my tumor. Still no one told me what to expect. I had already gone through menopause so maybe they thought it wouldn't be a big deal. When I was finally ready to try intercourse again after my operation, I just about screamed in pain. At least I now know it's not just me!

[starla566]

Not only do I experience severe pain I bleed and shouldn't because I had a total hysterectomy in January 2006. Has anyone else had the bleeding issue? What can I do???

Starla

[lauragb]

Yep, the not talked about effect of rectal cancer treatment. This topic did not come up at any of my doctor appointments, oncology that is. Because I had bleeding during radiation, I was sent to my gynecologist who told me about vaginal stenosis. I was, at that appointment, having my last period and that was the cause for the bleeding. My radiology oncologist sent me to the gynecologist after doing a very painful exam on me. Luckily the gyn exam was not so painful but hearing about what was happening in my vagina was. He suggested starting on dilators. I used them for a while with a little success before surgery but my surgery also consisted of a total hysterectomy due to uterine pressure on my rectum. So, to make a long story short, post surgery, my gynecologist has given me Estradiol suppositories to use for a while then recommends trying the dilators again as well as attempting intercourse. I have had no libido since this whole process started. I really hope to have some sex life again with my also very patient and loving husband.

So the recommendation is to bring up this topic asap at with your doctors and be proactive with treatment.
Goodluck.
Laura

[sadysue]

I am one of the people who did not get "back in the saddle" soon enough. I started going thru menopause before cancer and at a young age - 42. So did my mom and grandmother, so it was a family thing. But I still really enjoyed an active sex life, had great huge orgasms, and always looked forward to sex as often as possible - only difference was that I now used a lubricant. After the cancer DX last year and radiation, I lost ALL desire for sex I had no advance warning about this from doctors. After radiation was complete, I was given a "vaginal dialator" and told to use it everyday - 3 times per day for 15 minutes each time. Like who the heck has time for that? It would prevent scar tissue from building up and make it "easier for an ob/gyn" to get a look, when it was necessary. It was also suggested that I have intercourse 3 times per week - unfortunately my partner does not have a 3 times per week libido. I used the dialator once a day for a while but didn't bother with it after a month or two. Since chemo started in Oct, I was so tired and sick for the first few months, that intercorse was out of the question. I "take care" of my partner but don't feel any need to be touched in any way. Bad and so unlike me. I know the ostymy pouch has a lot to do with it too. I am not comfortable being intimate with it hanging off the front of my tummy. Sorry about my rant but this is the first time I've put my feeling into words about what's going on. And I also apoligize to the original poster of this thread because I know this does not help with her concerns. But I have a feeling that there may be other women in my position that are embarassed and feel awful about their lack of sexuality going through this disease.
Mary Ann

[eitter]

All I gotta say and maybe TMI, I just wish I had to worry about this and was having SEX!

I have had sex ONCE since dx 5.5 years ago, mainly because my JACK ASS (usually do not swear, but when the name fits use it!) ex-husband deemed my body disgusting and not worthy of having sex and my body was so ugly he divorced me because MY cancer ruined HIS life! This is the short version of the LONG story! Been divorced since March 2009 and have dated but not enough to go there. Thank Goodness for things that vibrate, again TMI! LOL

[weisssoccermom]

I realize that this is a pretty difficult topic and I don't want it to all turn to DOOM AND GLOOM

My point - BE PROACTIVE. I was (and for most people on this board who were - a lot of old timers) and have no issues. Am I still the same as I was when I was 20?? Heck no, but at 55 do I really expect to be? Let's face it - menopause would have happened anyway and many of the issues we face (decreased libido, decreased elasticity and dryness) would have happened without any pelvic radiation. My point of view - those CAN be treated (not sure about the libido one though) with either some estrogen cream (and no, IMO, over the counter plant like estrogens are NOT the same) or HRT.

The stenosis/scar tissue/adhesions - well, plain and simple - IT DOES NOT NEED TO HAPPEN or NOT TO THE EXTENT THAT ISSUES ARE PROBLEMATIC!!!!!!!!!! If you're just starting down this road - BE PROACTIVE. No, using a dilator/vibrator isn't something you always want to do - especially during treatment but....just remind yourself that the treatments only last a short time (and BTW - you will have to continue using these for a month or so longer). Truthfully, IMO, it's better to be proactive than to be suffering from the pain/frustration and in some cases, downright despair that I've heard from women dealing with the after effects of pelvic radiation. No, I didn't like feeling that I 'needed' to always follow the orders but the alternative was a whole lot worse. I can only say that I'm truthfully thankful that (a) I stumbled onto an anal cancer survivor website (didn't know the difference between anal/rectal cancer) and (b) that my a**hole of a rad onc (first one) at least told both my hubby and myself (even though he was 'snickering' and making snide comments - disgusting man!) that we would need to have sex in order to avoid problems down the road.

Jaynee

[Jachut]

Well, I agree, a lot of these things were always on the cards for us anyway, although I dont think so suddenly or to the same degree. Menopause is going to happen and if I'm honest, I think i would have struggled a lot with it when it happened to me naturally too. I'm really afraid of getting old, which seems a weird thing to say on a cancer board But I've never known anyone whose had as hard a one as I've had. It truly has been horrendous. Having never had a menstrual issue in my life, having had three easy normal pregnancies (one labour was 40 minutes!) I just never thought menopause would be such a difficult thing. I've also never had any mental health issues ever, so the depression and anxiety has been way out of leftfield for me too. Its like you said, you're THROWN into it and that can be a shock.

I only had the mildest of vaginal stenosis and I guess on the whole, I did and do have sex twice, three times a week. Intercourse had become painful for me but by and large HRT fixed that. The narrowing that did happen has actually, dare I say it, been a bit of an improvement, after three babies

I guess the biggie for me is the lack of libido. I get into bed and when DH doesnt appear in the mood or make a move that night (are we all familiar with - cue doom music - the HAND, lol). I feel relieved that I dont have to face it that night, and then I feel upset that that's wrong and will it ever be like it was? When i do do it, I pretend to enjoy it more than I do so that its over with quickly. I never initiate, never have those pleasant little daydreams and I really really miss the closeness and intimacy becuase if I get snuggly then of course, he thinks that means sex. I just cant reconcile myself as basically, horrible as the word is, frigid. I really really want to fix that.

[Badass]

Thank you all for sharing your experiences. I am about to start treatment and I have been amazed that in this day and age, none of the cancer docs I've met with brought up sexual function at all. I found my info online and approached my oncologist with the info about stenosis and dilators/hormone cream. He punted to the 30 something radiation oncologist who has yet to get back to me. I am wondering if he just figures since I am menopausal my sex life doesn't matter. It is really shocking to me that vaginal stenosis is ignored. Feels very victorian. I think having cancer, and especially cancer of the rectum, can feel so dehumanizing. I refuse to give up my humanity and claim to vitality. So, I hope this thread can help us all speak more openly to our doctors.

[sparky_grl]

I will add my 2 cents here...

I am now 5.5 years out NED (touch wood please) with anal cancer. I was in my late 30's when diagnosed with T3N0M0. I was diagnosed when my son was 10 weeks old. My hubby passed away while I was pregnant with my son who is now 6. My doctors maintained that the HCG from my pregnancy fueled my cancer and if I was not pregnant, I would not have been diagnosed for decades.

I did 2 rounds of mitomycin c and 5fU. I also did 24 rounds of daily radiation as well as gene therapy.

I completely agree with the prevention is KEY. Make sure your bladder is up out of the way by having it full when you are doing radiation. Thankfully, my oncologists talked to me about the effects of the radiation and I used the dilators from the gate although it was tough sometimes during my treatment.

Throw being single and having pelvic radiation in the same arena and it's a whole lot of fun, I'm telling you.

The radiation threw me into menopause although I don't find many effects from them as of yet. I work with horses and am in amazing shape being outside with 1400 pounds beasts training them and I can go all day and I do. I am probably in the best shape of my life right now. I live on a farm with animals and I'm an energizer bunny.

I think a lot of good comes from having a positive attitude and thinking that it will get better. It's funny how it usually works out this way. Yes, it sucks having cancer but I think it allows us a time to find a way that works for us.

I am pushing 6 years now after having had radiation and I find that I have a new normal although it took about 4 years to get there. My lubrication 'down there' did come back a bit after 4 years or so and I'm now down to needing 30 minutes in the bathroom each morning for the 'clusters' and the shower and I'm good till the next day. I do on occasion 'poop' in my pants and I'm mortified and I change and I laugh at it really being such a small price to pay for being alive.

Finally, get a peri bottle and replace your toilet paper with it. When you have a bm, use a bottle filled with warm water and you will save the 'newly' sensitive bum from being irritated. Take lots of baths if you find yourself sore down there. Aveeno oatmeal crystals worked amazing in the tub. Keep a jar of aquafor creme in your fridge and put it on your burned bum when it is sore and lay on your stomach and let it just sit there. People think I walk around with a bottle of water to drink it. How wrong they are.

Do not use any creams that are not approved by the radiation oncology team. A lot of creams are metal based and can interfere with the radiation.


Pelvic radiation is a tough gig. I've 'been there and done it'. It is however 'do-able' and I'm here still with very few effects from my radiation and cancer treatment.

Finally, your dildo is your friend for the first year or so.

Best of luck to you.

Sparky