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Help please I'm scared!!

DeloresBlackcow's picture
DeloresBlackcow
Posts: 7
Joined: May 2012

Hi Everyone,
I am a 63 year old Anal Cancer survivor. I just had a pet scan a couple of days ago and am now waiting for the results. My doctors said if it is clear like all the others have been, they will schedule my colostomy bag reversal and mediport removal. I am excited but also scared to death! I have had this darn bag for 11 months and am real scared my body won't work right again. I am also concerned because I have learned that radiation has really shrunk me, like not being able to have sex, it is too painful and when the doctors examine me it really hurts. So my question is if that hurts, how can I have a bowel movement? Has anyone had radiation and then had the bag reversed? If so can you tell me some things about it so I will not feel so scared. Is there anything that can be done about the shrinking. Right before I got the cancer, my ex-husband of 28 years ago found me on facebook. I went to visit him and we still love each other very much, we were getting back together and then I got the cancer, had the treatments and am now cancer free, but we can't have sex anymore. I feel real guilty expecting him to live with that forever. Is there any hope of that changing?

Thanks for listening.
Delores

z's picture
z
Posts: 1307
Joined: May 2009

Yes there is hope. Do you use dilators? Start small and increase the size gradually, or ask your love to help you with this, and it is more natural. Unless of course you get the dilators that are like the real thing. As far as reversal there are many on the correctol board that have had reversals and it just takes time. My dad had a reversal and it took time for the body to adjust. I wish you the best and keep us posted. Lori

DeloresBlackcow's picture
DeloresBlackcow
Posts: 7
Joined: May 2012

Thank you, my doctor did mention dilators, I guess I will tell him I want to try them.Delores

Cheyenne's picture
Cheyenne
Posts: 77
Joined: Apr 2012

You can order a set on Amazon for $54.95.

DeloresBlackcow's picture
DeloresBlackcow
Posts: 7
Joined: May 2012

can order a set on Amazon? I am confused I guess I don't know what diolators are, maybe I should research them, I thought it was a prescription. Thank you, I will check it out.

eihtak
Posts: 949
Joined: Oct 2011

Hi, and welcome to our family. I can see why it is a happy/scarey time for you. I finished my treatment about 13 months ago and also have a colostomy bag. Many people being treated never need one, and some become permanent...I still have mine. My GYN/ONC and GE doc are all just a bit unsure if I have enough sphincter control to make a reversal logical. They say one never knows for sure, but that I have excess radiation damage. I belong to a ostomy site C3Life where many people with ostomies have had very successful reversals, but admit it often takes a couple months to get your body back into working order...so be patient. I was recently diagnosed with Breast Cancer now so have kind of tabled the whole thing for a while. As far as vaginal issues from radiation, they are very real for most of us. My GYN works with Cervical Cancer patients and said it is common to pack the vagina with moist gauze during treatment to prevent stenosis, he didn't know exactly why it is not common practice for Anal Cancer. At my recent check-up he could barely get a swab to test for Cervical Cancer!!! Dialators seem to be the sensible way back, but I have also heard of women insirting the smallest size tampons for an hour or two at a time then working up to larger ones and increased time...just never leave in for too long without changing. This may be an option for those not comfortable with a dialator. My doc also said that most of my pelvic organs have fused together from the pelvic radiation making future surgeries a bit more complicated, another thing I was thrilled to hear. Its funny, I am a big soccer fan...I feel like a goalie who keeps making these great saves (recovering), but no matter how great I play my team (body) can't score a goal to win the game!!! Best of luck to you, keep posting to let us know how things are going. As always, all in my prayers.

Phoebesnow
Posts: 464
Joined: Apr 2011

God bless you for all that u have been thru and will go thru. With everything going on with yourself your ability to support others is truly admirable. I know that it is hard to deal with these setbacks and endless tests and treatments. I think you are playing a good game and you will win. But I think you know that it is how you play the game that really matters. Thank you for your genorisity of spirit here.

eihtak
Posts: 949
Joined: Oct 2011

Thankyou for your support...we are all on this journey together, and the truth is more will join us!! I always feel like the more we can be there for each other the the less we focus just on our own issues. Through our communication of ideas with each other we also may stumble onto some truely helpful advice that would otherwise be missed. I often tend to compare things like I did the soccer game (I forget what thats called)....but you're right, its how you play the game, and I plan to play my best! Its one heck of a sport though isn't it????

eihtak
Posts: 949
Joined: Oct 2011

Thankyou for your support...we are all on this journey together, and the truth is more will join us!! I always feel like the more we can be there for each other the the less we focus just on our own issues. Through our communication of ideas with each other we also may stumble onto some truely helpful advice that would otherwise be missed. I often tend to compare things like I did the soccer game (I forget what thats called)....but you're right, its how you play the game, and I plan to play my best! Its one heck of a sport though isn't it????

torrance
Posts: 118
Joined: Jan 2012

Delores,

I highly recommend you seek out a pelvic physical therapist....yes, there is such a thing. Hopefully your gyno can recommend one that has helped radiation patients in the past. When I finished treatment, a Q-tip was a pretty lofty goal! However, with the ingenuity of my PT and working outside the norm, I am back to fairly normal. I will have to continue with dilators for the rest of my life, small sacrifice. I ordered my dilators from vaginismus.com. Be patient and it can happen. Please feel free to contact me if you need more intimate information on how it all works.

Joanne

DeloresBlackcow's picture
DeloresBlackcow
Posts: 7
Joined: May 2012

Thank you for your information. I don't have a gyn, only my Oncology Radioligist, Oncology Chemo, Oncology Surgeon, and my General doctor. My Surgeon was the doctor that told me about diolators. I guess I will talke to him more about them. Thanks again.

RoseC's picture
RoseC
Posts: 528
Joined: Jun 2011

Thanks for the info - I never heard of a pelvic physical therapist. I'm seeing PT but I don't think she (or the hospital in general) deal with radiation-affected pelvis's in general. I've often thought to ask but I'm a bit shy about it. She does great, my PT, but I would surely like to see someone who has experience in pelvis's that have been affected by radiation. No one seems to address the problem of radiation damage, only the facts as they see them today. You're sore? You hurt? We'll work you and massage the area we think might be affecting you - no real knowledge about radiation-induced damage. I have a very real feeling that there's something rather easy to fix that is being overlooked.

How does one go about that? Just ask? I know it seems like a simpleton question, but I really think it's important and am not sure how to phrase the request. Truth is I haven't tried a truly sexual relationship since treatment. My husband and I are happy are things are, which I am so very grateful for. We may be different from others, but we don't see sex (intercourse) as the end-all to everything (no, he's not weird, he's VERY much a man - the most masculine and wonderful man I have ever met in my life). I'm much happier with a hug and a loving husband, and my husband is the same way. Guess we are just lucky that we agree on the same thing.

I've had pap smears and the gyn didn't mention any trouble so I guess things are ok in that area.

Goodness, we're all so different - no one person can tell another what is normal and what is not. Ha! I guess that's what makes the world go round.

Eihtak - thank you - I agree that the more we focus on others the less our own problems seem. You've been through so much - you are truly an inspiration to me and I'm sure many others. Thanks for being here. I so much wish you all the best life has to offer.

torrance
Posts: 118
Joined: Jan 2012

Rose,

You should check with your gyno for a referral, or your PT for a Pelvic PT specialist. They are different. Once you find one, you'll need to find out if she has any experience with radiation patients as it is different than their typical patient. However, if you are able to have a regular pap smear, you are probably fine. I would recommend that when you do try that you use lubricant as your horomones are shot and you are probably pretty dry. I get the thing about sex not being the end all, but you need to maintain good vaginal depth and with for future exams so you may want to start using dilators on a regular basis if you choose not to have sex on a regular basis. I had some "fusing" because of radiation and it could still occur as it is normal as we age anyway. Maybe you might want to order a set of dilators and see how you do and perhaps you won't need to even seek out a pelvic PT.

Please feel free to call or contact me if I can help or clear or give further explanation. I know this is a very personal subject, believe me I get it!

Joanne

RoseC's picture
RoseC
Posts: 528
Joined: Jun 2011

Thanks so very much Joanne - I so much appreciate your response,

I don't want to use dilators, plain and simple fact - intercourse is not important to me (my hormones have been shot for about 10 years, since I went into menopause) - actually intercourse is not important to me at all - the whole subject gave me more problems than I want to deal with now. I'm glad to be done with it. And thankfully my husband feels the same. Not to say that we didn't have a great sex life before - just that it's not at all important anymore. I guess if vaginal dryness is normal anyway, why bother if we're both happy with things as they are... I know not many people will agree with me, but if there's one of you out there who's feeling like you're weird for not wanting intercourse, and my post can help you feel like you're not alone, then it's worth it for me to post.

Thanks for the info on the recommendations for a pelvic PT - thing is, I like my PT a lot and am a little embarrassed to ask her for a recommendation for someone else, more proficient in pelvic damage due to radiation - I know, I've got to get past that and just ask her.

Thank you for getting it - it IS a very personal subject (and I can't believe I'm posting such personal details) but it helps to know that there are folks out there that don't think I'm some kind of weird knucklehead.... :)

One more thing that I want to say - and it may have nothing to do with anything - my hormones stopped working when I had a very bad viral upper respiratory infection about 10 year ago. It may have had nothing to do with my anal cancer diagnosis, but since then nothing has been right. I know it's speculation, but I really think that infection, or whatever it was, had something to do with not only my lack of sexual response, but with the cancer itself - like something went wrong with my immune system way back then and may have allowed the cancer/virus to assert itself. Sorry if this sounds stupid, but I always have associated that virus with something really bad.

Edit: One more comment :) There are lots of folks/women who don't have a man to encourage intercourse - what do they do? Those who are 'with someone' are not the only people in the world. I don't say this to be obnoxious or difficult, just that not everyone is 'with' someone...ya know? Dilators, yes, that's an option I guess....but there are so MANY stories and individual circumstances in this world.

torrance
Posts: 118
Joined: Jan 2012

Rose,

It is sooo awesome you are being brave and asking the questions. NEVER in a million years did I think I would be discussing such things as this! Yeah for all of us. Frankly, who cares about your sex life anyways?! Meaning, whatever it is, is your normal and that is perfectly wonderful. (hope that didn't sound mean, wasn't meant to) Just don't want you feeling weird. If you choose to remain not partaking in intercourse, you still MUST keep yourself open for medical reasons. I have a man, but if we are inactive for a period of time I will have to continue the use of dilators as things can shrink and possible fuse. So please don't not consider using dilators to maintain a healthy vaginal situation. I am using premarin as part of the healing process, but that won't be for much longer. It just helps the tissue become more supple. The premarin is an estrogen therapy, however it shouldn't be a risk for anal cancer survivors as anal cancer is not a hormone related cancer. Hope all this helps and doesn't confuse anyone.

Joanne

Captain11
Posts: 88
Joined: Apr 2011

Hi, Rose

My hubby and I are the same way... we are in our 60's and since each of us have gone through cancer, we have rarely been intimate.

In February, I started seeing the oncology team at the VA hospital, where both my hubby and I go. The team is made up of the oncologist, the rad oncologist, and the general surgeon.

Yesterday, I met with one of the rad onc doctors. He was great and showed me what my CAT scan looked like. Because I have been having difficulty with my legs, hips, and balance, I'm not sure whether I have muscle or nerve damage, and/or whether the damage is permanent. My onc says he has seen it both ways: it either completely goes away, or it never gets better, and it takes time.

I got some good advice from my rad onc yesterday... He is very nimble and he showed me many exercises and movements to gain the strength in my legs and pelvic area (the site of the radiation). He suggested yoga. He showed me the moves and even helped put my legs into the proper position, which I couldn't do on my own. One thing is to lie on my back and draw my knees up to my chest and hold for as long as possible. It actually felt good, once I got into that position. He also said that, since I have the neuropathy problem, that I have to move as though I am a recovering stroke patient. He is very experienced in the radiation of the pelvis. He said to keep moving, keep training and stretching the leg and hip muscles, or they will totally stiffen up. If you are like me, I can't sit for more than 5 minutes without my hip muscles stiffening. I have to stop after about 10 minutes of driving and get out to really stretch my legs, or else I stiffen up like a 90-year old.

He said that the radiation causes the shrinking vaginal and anal openings, and also muscle damage in the pelvis moving down down to the legs and feet. The chemo causes the "nerve" damage in the hips, legs and feet.

He suggested my going to the YMCA or to the American Cancer Society, the Hope Club, for yoga classes, which are free. I think that may help you. I never heard of a pelvic PT either. So, I am very glad for the info.

As far as the dilators go, my gyn, who also is well versed in oncology, said to use the dilator which is approx 1 inch in diam... to lube it good, and only insert it to the point of where it starts to feel uncomfortable. She said to leave it there for 30 sec to a min and then take it out. Do this on a daily basis.. after enough times, you will be able to insert the dilator farther. She said not to go over 4 or 5 inches deep. She also said to goop up well and to have intercourse as much as desired. The intercourse keeps the vagina/cervix from closing... very important, necessary for gyno exams.

Hope this helps.

God bless.

RoseC's picture
RoseC
Posts: 528
Joined: Jun 2011

Thank you so much Captain - it's so nice to hear I'm not the only one concerning (you know what(!!!) - sex(!!!!).

It's so good to hear that this pain may go away. Course it might stay, but I'd rather believe it'll go away :)

I've heard so much about yoga and have yet to try it but I know it's somewhere there in my future. I'm not exactly like you because I can sit for hours without pain - it's walking more than about 250 feet that makes me cramp up like a lobster. The drawing the legs up - yes, that feels REALLY good. I'm surprised to hear that the chemo causes these problems - I've always been told that it's the radiation.

Who knows - sometime maybe I'll get back on the 'track', but I thank you SO MUCH for interjecing a little bit of "I'm not totally weird, I may be normal after all" into my brain. Thanks SO much.

eihtak
Posts: 949
Joined: Oct 2011

You made me smile! You are totally normal in the brain and everywhere else too. Between all my issues and my husband also recovering from a bone marrow transplant sex is not part of our lives right now. I don't expect it will be again either, and I'm so very ok with that. Even before either of us were sick, I felt it not necessary. Believe me, I've had some wonderful, exciting, fullfilling, sexual experiences in my life, both with my husband the past 30yrs and in the years before him with someone else (or two). But at some point I guess I just felt....done???? Truth be known, not having much sex, when healthy, I had more energy and felt less stressed, weird and the opposite of what you'd think, but worked for me. I think its just another way we are all different. It is although, important to prevent or treat vaginal stenosis (shrinkage and fusing) so for those of us who have had pelvic radiation and who are not sexually active should probably take some steps in keeping that area in good working order.(lol) Since you have not had a problem with a pap test, you are just fine! Also, try the yoga just for fun...I started a gentle/light yoga class after Christmas and it was great. I had to stop for a while, but hope to start again soon.
I love this group of people here!

sephie's picture
sephie
Posts: 560
Joined: Apr 2009

hey, we all have various problems. after tx, some of us can have sex, some can not. that is not the most important part of life. it is very hard to do and painful for some of us which makes it no fun .. you have a wonderful hubby. also, what is very good about this site is that we can say anything and are accepted. the docs need to know what happens to us after tx so that they can do better for the next person. at MDA , they ask about the sex part. You do need to keep the vagina open for health reasons. i think that it might get closed as the years go on if you do not use dilators. this closure could cause problems later on. so think about trying the dilators. sephie

shirlann54
Posts: 161
Joined: Aug 2011

You need to go to a gyn Thats what i did .he started me on PREMARIN VAGINAL CREAM .And it works wonders .It took about 2 mon and we could have sex it works I use it about 3 times a week The Dr said i will have to use this forever but thats ok with me .Good luck with ever thing.Shirley

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