Hello Sashacat, 

Thank you so much for sharing your story Sashacat. It will be very helpful to others who have similarly been affected by anal cancer and suffered similar consequences after treatment. I am so sorry that this has had such a devastating effect on your sex life and your honesty in talking about these matters will be of great help and comfort to others who will realise that they are not alone in this situation. I can totally understand why you feel that it isn't fair that there isn't any reconstruction surgery available for you. As you say, it isn't often talked about which can be really difficult when you are having to go through this and suffer long term effects from treatment. 

I am so pleased for you though that despite all this, you are cancer free 10 years on. I wonder if you have seen [@Janelucia]‍ 's very active thread on our forum which is about anal cancer? You can find it here and feel free to chat to others there like [@texasgirl]‍ who I am sure would love to hear from you and your experience. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi Sashacat,

I had to go look at my butt cheeks to see what you are referring to.  I haven’t heard anyone else mention this dilemma; however, I’m encouraged that you are thinking about your upcoming holiday.  I rarely leave the house for fear of not making it to a bathroom in time.  My butt cheeks are not yet what you describe.  I guess that will be in my future.  I wonder if they make something like Spanx with padding.  There must be something like that since big butts are “in” now.  I bet no one can tell unless you are wearing a string bikini.  I understand how it is discouraging.  I’m flat chested, weigh 91 pounds and worry that I look like a drug addict or a transgender person.  I am stuck at 91 pounds but determined to get over the hump.  

I was misdiagnosed by two doctors and was pretty sick by the time I got the correct diagnosis and didn’t handle the treatment well at all.  I’m 21 months post treatment and still struggling.  I live in Texas but this was the only support group I could find at the time.  The HPV Anal Cancer Foundation referred me to a private Facebook group about 6 months ago.  It has over 300 women from around the world.  I think the majority of us are discouraged at the lack of knowledge there is about anal cancer and how to treat the long term effects.  Some feel like breast cancer gets all of the research funding.  This group has been my favorite because it was a small group of us going through treatment around the same time.  With the larger group it seems less intimate and there’s usually a heart wrenching story every day, but having these ladies in my corner has kept me reasonably sane.  I miss this small group of ladies on this site a whole bunch.

I thought the treatment was universal but it seems like they typically do surgery first in the U.K. and treatment afterwards.  I believe the US does surgery as a last resort. 

I was not referred for pelvic floor physical therapy or offered dialators and that area has atrophied.  I tried PT a few months back but the damage is so bad and it had been so long after treatment that it was to much of a challenge and to painful for me to continue.  My Personal Care Physician really wants me to stick with the PT, but honestly I don’t want anyone near my bum.  I’m fortunate to have an understanding partner.  I just turned 69 and have had enough sex for a lifetime.  I have pelvic radiation disease and am in and out of the bathroom all day which makes sex even less appealing.  I have found that I can only tolerate bland foods which are unexciting.  

I think there are men out there that would just love some companionship.  Unfortunately, I don’t have any suggestions on how to meet them.  It’s wonderful that you are 10 years cancer free!  I will ask around and see if anyone has any suggestions on your bum situation.  

Take Care, Texas girl aka Sheri xx

Hi Sheri! Seems like you're having a bad time and all in all it's probably difficult to feel optimistic. Every case is different and when I was diagnosed I wanted to know everything about Anal cancer. I could only find most information on American sites! It almost felt as if we were pushed to the back of the queue and ignored. I'm a strong, independent woman but was so afraid when they explained the treatment and possible after effects, that I decided against treatment. However, soon I came to realise that I was being stupid and I had a chance at life more than many cancer patients!  I'd had IBS for years and when mucus was mixed in, doctor sent me for sigmoidoscopy ( small camera up anus). They saw a polyp and I went to have it removed. Simple small op, but when I woke up I knew something was wrong. They could tell it wasn't normal and had removed all area around it as well. Biopsy then showed squamous cancer but it hadn't spread and treatment began. 2 weeks of intravenous chemo and 30 sessions of radiotherapy. It was the radio that floored me because my skin completely opened up at top of my legs and I couldn't walk. Had to stay in hospital for 6 extra weeks for healing. I had no partner as such, and my daughter had 3 young children and lived at other side of the country. It was hard managing when I got home. It seems dreamlike now. Seem to remember being in bed with my cat always next to me, good friends being as helpful as they could and Oromorph ( liquid morphine). Now, 10 years later , I'm alive and well and apart from moaning about some physical issues, which is vanity on my part, I must sound extremely ungrateful! It took 2 years to feel ok and energy levels I really struggled with. Noone can understand the fatigue. I still get annoyed that everything is directed at breast cancer, but because we're a special minority group, research is limited. Most people haven't heard of it, only bowel or colon, and neither had I apart from Farrah Fawcett Major!! Anyway Sheri, try to stay positive. Food will become more appealing I promise. Please don't stop trying. I'm 68 by the way but won't give up on love for a long time yet. God, I'm sorry, I've written a book. Sending you sincere and heartfelt wishes for a full recovery. Liz.

Thank you Sashacat!  You don’t sound ungrateful.  I didn’t mean to whine..  I know that a lot of women didn’t fare as well and the treatment didn’t work for them or the cancer metastasized a couple of years after treatment.  I am just frustrated because I can’t get the weight back on and I know it’s unhealthy to be at such a low weight.  I’ve read that PRD is similar to IBS.  Have you figured out a diet that works for you or is it still hit or miss?  I’m trying to stay on low Fodmat foods to see if I can get my stomach to cooperate.  

Like you, I was afraid of the radiation, but really had no clue as to the additional damage that it causes.  The radiation oncologist gave me a stack of papers to sign with the possible side effects listed, but I was too freaked out to absorb or remember what I was reading.  I think they are starting to make headway on other treatment options; however, they seem to only be available for Stage lV.  I guess they are more of a clinical trial.  I asked why the treatment hadn’t changed in 40 years and was told because it works.  Very brutal though.  I can’t imagine going through it without family close by.  Makes treatment more challenging.  We just need to keep educating and wipe this HPV related cancer out.  My lifelong partner told our friends I had colon cancer because he thought it was personal and didn’t want people to think he had been putting his where it’s not meant to go.  I tell anyone that asks.  The nurses in the hospital and rehab center were very curious because they had never met anyone with anal cancer.  One nurse asked if she could look at it.  Since it was on the inside there wasn’t much to see.  

I think I will feel less anxious when I hit the 2 1/2 year mark.

Take Care, Sheri. xx.  And don’t give up on love.

Hi Sheri. Like you I've never had anal sex, although I've been married twice and had many sexual partners in my time! The stigma attached to this cancer is really a bummer, ( and many other puns that I could add). I was told it was mainly gay men that present with it. My fear was I'd end up with a colostomy bag, which would have rendered me a social recluse!!! Everything you're going through is normal. Weight loss, sore mouth, no interest in food, feeling nauseous, no energy and obviously loose bowels! You think it will never end, but it will. I look great ( sorry, that sounded very big headed!) and though I never have formed stools, I manage fine and eat whatever I want. I'm only 5 feet 1 inch and weigh 8 st 10lbs which is normal for me. When I was ill I lost 2st 7 lbs. Remember, because it was 10 yrs ago I've forgotten the pain but never the nightmare!! You will get stronger everyday, but honestly it will take time. You're only 22 months after treatment so give it another year. I think you should persevere with small dilators or your vagina will heal up completely, and that wouldn't be healthy. I was determined, and did it! Anyway that's your choice. You're lucky to have a loving partner, whose also suffering from all this upset. Be kind to each other. The bum cheek thing only became evident couple of years ago and although they drop as we age, it's evident to me that it's muscle zapped out by radio. Oh well, another crap reminder of the brutal regime we survivors endured, but noone understands because it wasn't breast cancer. You will be beautiful again!!!! X

Hi Sashacat,  I was supposed to comfort you!  Here you are comforting me!  Thank you so much for taking the time to make me feel better.  If you had said “saggy butt” I would have definitely related to that.  I think big butts are overrated. Ha!  So you are tiny, too.  I used to be 5’7 1/2” but I’m down to 5’6” due to osteoporosis.  

There are hundreds of women of all ages with this dreadful disease.  I am thankful that I wasn’t diagnosed until after child bearing age and retirement.  It must be so hard on younger women that are thrown into menapause and wanting to start a family and many needing income as well so have to continue working throughout treatment.  I’m blessed that I have all the time I need to stay close to a potty.  

I’m looking forward to hearing about the next love of your life.  It will surprise you.

Big hug, Sheri xx

Hi Sheri. I agree, younger women who cannot conceive after treatment must be devastated. Suppose we're lucky in that respect! I was told that osteoporosis and hip problems could be a side effect. Did you have it previously? I was 58 when I started treatment, suppose the older you are, there's more chance of these things! Everyone internet dates but I don't trust it. I tried it once but wasn't impressed! ( I'm so fussy). Most men want a physical relationship and having to explain the situation is daunting! I'm quite content really. I have my own home and can please myself! I go abroad on my own and always get attention but never act on it. Not interested in sex, just kisses and cuddles will do!! He'd have to be very understanding. There must be men who can't get erections after surgery. Maybe I should start a dating agency. Ha!!   Really hope that you continue to improve everyday. You'll have down days, but the worst is over now. Things can only get better.

Hi sashacat, hope you don't mind me talking to you (being male) but quite a few men who have had prostate cancer have problems down below the feelings are still there but no action, ("I'm one of them) luckily my wife understands, we still have a kiss and a cuddle, I've been like it for over three years we've go used to it there will be plenty of gents out there wanting a lady friend just for company, but are probably scared of trying to find someone because of what's wrong with them, be nice if there was a club for both sides to meet up and talk,, hope you find someone soon God bless.

Billy

P.s we've been married for over 46 years luckily we enjoyed ours when we were young,. 

Exactly my sentiments Billy! There should be a dating site for people with sexual problems! I know that there's lots of ways to pleasure each other without full intercourse, but when you first meet someone, these issues need to be addressed initially. Bit of a ' turn off' for lots of men. Glad you have a loving partner to help you through though. Take care and thankyou for a male prrsactive!!!

Hi texasgirl. Hope you don't mind me being male probley shouldn't read ladies string call me nosy only I'm on hormone therapy for prostate C it's noncurable so I'm on treatment rest of life, but side effects are weight increase,, I've finished up about 42 B, and having hot flushes there must be something out there that works for ladies as well, bottom only thing I can think of is eat plenty to fill them out a bit, best wishes.

Billy