Have to have Pelvic Exenteration

• By julie445
• Posted September 13, 2009 at 11:28 am
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Sara, thank you for posting. You just made my day! It gives me hope to see a long term survivor who has gone through this surgery. I'm sorry you have had to go through all that you have, but I also want to thank you for posting.

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• By sara48
• Posted September 13, 2009 at 1:51 am
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Hi Jodi, I havent been on this site in a long time,work and so much family stuff,but I was catching up and feeling bad that there is people that need our help and I feel bad I havent been there for them. I was reading your post about you having frequent kidney infections. That was my main problem the first 5-7 years after my exenteration. During surgery they accidentally damaged my right ureter, and the right kidney just would not drain right. I had several minor surgeries, stent in the uterer couple of those. I ended up pretty sick in the hospital several different times, and this was hard. I had to work,so going back in the hospital for iv antibiotics and fluids was hard. They did a more drastic operation and took more colon and made a larger conduit for my urostomy, That helped. Now my colostomy is on my right and uro on my left. That bought me a few more years with that kidney. But in 2004 they removed the kidney. Best thing they did. I havent had one infection at all. I just feel so fortunate to still be living when in 1978 they did not give me much hope, but like you I thing our children are our fighting points. I just said do whatever you have to do so I can take care of my babies. I hope you are doing well and your family too.
Sara

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• By Hopefull3620
• Posted July 30, 2009 at 12:56 pm
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I myself will be going through the exenteration procedure on Aug. 3rd. I have been scared sick for the past 2 weeks. I do not tolerate pain well at all. I do not have a very big support group now, during or after surgery. Will I be able to cope and manage on my own when I come home?

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• By Jodi_ayn
• Posted July 19, 2009 at 9:07 pm
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Robynanne, I'm so sorry to hear about your cousin. It is such a hard thing to deal with mentally and physically and it's so difficult to make these decisions. The one thing I can say that is good about the pelvic exenteration is that it's a second chance at life. She has two daughters and I can say that my kids are the reason I live through all this. I'm so thankful to have gotten another chance at life and it really makes you look at things differently.

Also, you talked about her having surgery at MD Anderson even though she lives in CA. I think MD Anderson is wonderful and I almost had my surgery there. The only reason I didn't have it there is because of the after care. That is almost as big a deal as the surgery, to me. My doctor here in NM came from a big cancer center in Dallas and is the person I'm seeing every 3 months for a long time to come. Obviously I did trust her to do the surgery, but it's almost as important to me to have someone close by that I can count on and communicate with on a regular basis. There is a big chance of complications with the surgery and they don't always happen right away.

As far as I understand it, there is no curative chemo. So I had the exent so that I could have a chance at a longer life. My doctor was able to get all the cancer out, I've changed my lifestyle and eating habits to hopefully not have cancer again, and if all goes well, I could live to be 80! That's my plan, anyway!

I sent you a friend request and we can talk about this as much as you (or your cousin) would like.

Best wishes and I'll pray for you both!
Jodi

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• By flowershoplady
• Posted July 16, 2009 at 6:32 pm
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how great to hear that your surgery was a success, and i hope you're doing well recovering at home. be good to yourself....and ask for plenty of help. and, i know you were very concerned about the pain management....and i sure hope that's as much under control as possible. sending very gentle hugs....

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• By Robynanne
• Posted July 16, 2009 at 5:50 pm
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Jodi-
I have been reading your conversation with Julie. My cousin is 31 and is considering pelvic exenteration. We live in California and considered going to MD Anderson for the surgery. She is 31, had a hysterectoym in Jan and has had nothing but complications since then. She has had the hysterctomy. Shortly after than, she was due to have a laparotomy (sp) and when they checked her, she had another tumor so that had to be removed prior to surgery. They did her surgery and 3 days later, she was in the ER again and it was determined that she had a recto-vaginal fistula. So, another emergency surgery and a week stay in the hospital. Here we are in July. She has been going through chemo since Mar and recently it has been decided that the chemo is not working. They gave her the option of either the pelvic exenteration or continued chemo..just a different chemo recipe. So, now we are down to the wire. She is young, she is healthy but she is scared of complications because of her past complications from surgery. She has a rare type of cancer...squamous cell carcinoma arrising from a dermoid cyst in the ovary...categorized as ovarian because of its origin but has traits like cervial...so it is very tricky. So, she is asking for input from all of us and I am checking on research for her. If you could say anything good about this long, extensive, scarry surgery, please do. She has 2 daughters and is a single mom but she has an awesome family and we all support her no matter what she wants to do. She said her main concern is making the pain go away. Thanks so much and any advice, comments, prayer would be greatly appreciated!

Robyn

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• By Jodi_ayn
• Posted July 14, 2009 at 4:21 pm
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Julie - I am SO GLAD to hear from you! And you got discharged today? That's awesome! That was a quick hospital stay! Did you ask people for help? I hope you did and you're not going to be alone at home. Thank you for taking the time to update us. I'm so happy you are through that and can start this next chapter of LIFE!

Jodi

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• By julie445
• Posted July 13, 2009 at 11:10 am
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My surgery was a success, took 13 hrs and was a total exeneration. Everything was just as you described Jodi. I actually get discharged tomorrow. And this morning had all my tubings and IVs taken off!!!!! Freedom!!!!!!!!!!!!!!! My hips are an achy mess from not being able to move around much or on my own. OUCH. That is what bothers me most at this time.I will post more later. I can only sit upright for a limited time, then start slouching and hurting.

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• By flowershoplady
• Posted July 9, 2009 at 10:54 am
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i've been thinking about as well, julie. i hope the surgery was sucessfully and that your recovery is smooth and uneventful, with the pain 'managed' as best as can be. sending very very gentle hugs....

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• By Jodi_ayn
• Posted July 9, 2009 at 10:05 am
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Julie - I've been thinking about you a lot! I know you are probably still very out of it, but we are anxiously awaiting an update from you to see how you are doing.

My thoughts and prayers are with you!
Jodi

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• By Jodi_ayn
• Posted July 5, 2009 at 3:25 pm
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I got the pillow at Target. It's the kind that women use for nursing babies, so you find it in the baby department.

In the hospital I tried a couple different things for pain. I think I was originally on morphine and the epidural. I was having an allergic reaction to something (itchy rash on my back) so they switched me to diladen (sp?) and took out the epidural. I wish the epidural had stayed in longer and it was originally supposed to be there 3 days. I was so out of it that I wasn't able to be in on that decision.

The diladen was on a pain button. It was so frustrating because you could only push the button once every 10 minutes. Nobody was allowed to push your button for you. So you would be comfortable enough to fall asleep and then in 15 - 20 minutes, you were in pain again. I think I had some friends or family members who pushed the button for me...but I do remember it being hard to sleep, move by myself in the bed, or even stay awake.

The dilator didn't bother me until I was trying to sit up and was therefore sitting on it. My sister in law told my husband to go get that pillow because she saw how difficult it was for me to sit. But the majority of the pain I experienced was abdominal and internal.

I don't really remember if I was taking oral meds at the same time as I had the button. But at least by the time I was able to eat, I started taking vicoden and using the pain pump at the same time. Eventually I stopped with the pump and just used oral. I alternated between 600 mg ibuprofen and vicoden.

I rested a lot. Moving is what hurt, so I would camp out on the couch or in bed for hours at a time. I had a catheter for weeks after surgery, so I didn't have to go to the bathroom much either. But it's important not to lay around all the time either, so I would try to eat dinner at the table with the family (on my boppie pillow!) and take a bath every day. As time passes, you just do a little more each day....but you start with nothing.

Once I got home, I was never laying around in brutal pain unable to function...but I was always sort of hurting. I hope that makes sense. I don't want you to be afraid of being in a ton of pain, but I'm not going to lie...it is painful. I am terrible with pain...and I think I'm a horrible patient! So if I had it all to do over again, I would have just kept the epidural longer. We never did figure out what was causing the rash, but it could possibly have been that I was hot and laying still on my back for too long...sweat rash maybe?

Because I had a hysterectomy in 2002 with the original cancer diagnosis, I was forced into menopause at age 32. I have been using an estrogen patch and still have terrible hot flashes without it. My doctor had me stop using the patch about a week before surgery because of the risk of clotting. Once the surgery was done and I was having horrible hot flashes, she let me back on the patch and I got a daily abdominal heparin shot for weeks. But in the hospital, I had tons of hot flashes and was just sweating all the time. So that may have caused the rash. I've had 2 epidurals from having babies and morphine in the past.

I'm rambling again! I hope you know this is good therapy for me still as I continue to come to grips with my new body. It is so helpful for me to talk to others about my experience because there are so few people out there with the same experience.

Jodi

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• By julie445
• Posted July 4, 2009 at 8:16 pm
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Also, do you feel they gave you good pain control in the hospital? And the meds gave good control once at home? Did that dilator make you uncomfortable at all? I'm surprised they didn't mention that to me.

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• By julie445
• Posted July 4, 2009 at 7:21 pm
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Thank you so much. I plan on taking my lap top with me. Although I don't know how realistica it will be that I will be able to use it. But should I feel good enough, I will definately post an update.

Jodi--where do you buy one of those pillows? I will surely get one. And thanks for the heads up on the vaginal dilator! Nobody mentioned that to me.

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• By flowershoplady
• Posted July 4, 2009 at 12:16 pm
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julie, i'm not sure of the date of your surgery, and wanted to send positive thoughts and wishes your way.

also, there is a woman on the hystersisters.com site, in the cancer forum, with a name/id of ialwaysworry that is about to have a pelvic exeneration too....for vaginal cancer. perhaps you can connect with her, someone going through the same thing, at the same time. and, of course, it's wonderful that this forum allowed you to hear from other women who have been through what you're about to experience.

and, as jodi posted, ask for help from others...specifically. people want to help, but unless you tell them what to do, they don't know what's needed. and if you need garbage dumped, linens changed, or whatever, they'll help you! it not easy to be sick and single, and particularly a single mother, so please reach out. i bet if anyone here lives nearby you, they'd help as well.

when you get a chance to be near the computer, please let us know how you're doing.

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• By Jodi_ayn
• Posted July 4, 2009 at 11:12 am
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That's a great link Bymyside. I hung on every word! I had (have) a lot of the same emotions as her. Thanks for sharing that!

Julie - I would say I had the most pain in the abdominal area. Although I do remember having one night where my whole body hurt so much that I had to get my husband to move my legs for me. You don't realize how much you use your abdominal muscles until it hurts when you do! When I woke up from surgery, there was a inflated dilator inserted vaginally that literally stayed there for a month or so...I don't really remember. But it holds everything in place while it's healing. It was sticking out a good couple inches so it hurt to sit. I got one of those Boppie pillows to sit on and it saved me! Definitely get one! And take your own pillows to the hospital so you can prop yourself up and get comfy.

I had someone staying with me (lots of different people came and went) for 4 months total. They helped take care of the household and getting the kids where they needed to be and especially taking care of the 2 year old. Actually he was only 15 months when I had surgery. I think I started driving after 2 or 3 months. My doctor was pretty nervous for me to drive, but I think it was because I was so fragile at the time! And not because of medications. My first trip outside the house was 2 weeks after being dismissed from the hospital. The only reason I left the house was because I had a post op appointment! I took my Boppie with me to even just sit in the waiting room and the car! I was slow and careful and definitely taking vicoden...but not so much that I was out of it. I had someone with me and they dropped me right at the door. But I wasn't going grocery shopping or to any kids' events for a while.

The pains that I have now come and go, depending on what I'm doing. But it's all manageable. I'm a stay at home mom, so during the school year, I'm able to nap when the baby naps! That has been very necessary for me to recharge. I don't like taking pain meds, so I generally don't. At this point, I may use ibuprofen or tylenol if I need it....for instance, sitting at my son's 2 hour baseball game on metal bleachers (even with a bleacher chair) requires ibuprofen! But I don't want to miss out, so sometimes I get up and walk around during the game.

I found that everyone around me really wanted to help. Everyone says, "Let me know if there is anything I can do." And then we don't know how to ask specifically for what we need. But my sis-in-law and mother-in-law weren't afraid to ask. They set up meal schedules and hospital sitting schedules and drive to appointment schedules for weeks...I think it was a good couple months. I found it to be so nice that someone else was asking for help....and everyone was so willing and eager to help. The people close to you want to help you out and they're not sure where to start. So please do delegate someone to ask for you or get on the phone and set it up, if you haven't already. I didn't realize you were a single mom. That is going to add an extra challenge for you! I wish I was closer and I would help, too!!!

Jodi

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• By Bymyside247
• Posted July 3, 2009 at 1:49 pm
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Julie445: I have been following your post, not giving advice because I have not walked in your shoes. I wanted to say though, that I don't think that anything is wrong with you for not freaking out :o) I was amazed at your post and how you are dealing with things. Matter of fact, I am amazed at all the ladies who have responded to you. In my belief, God has provided you fabulous coping needs!

I was reading lastnight and came across something that I really think may benefit ladies whom are going through or have been through what you are about to go through. When I read it I thought of you and how I must have stumbled upon this so that I could share it here. Anyhow, the link is below :o)

http://images.google.com/imgres?imgurl=http://www.canceractive.com/images/c arol_jones_lisa.jpg&imgrefurl=http://www.canceractive.com/page.php%3Fn%3D10 39&usg=__z6zNWAO9Xta9ovC7jA8RTWmzNTk=&h=200&w=200&sz=17&hl=en&start=3&um=1& tbnid=7c6-u5XbGYzeIM:&tbnh=104&tbnw=104&prev=/images%3Fq%3Dwhat%2Bwill%2BI% 2Blook%2Blike%2Bafter%2Ba%2Bvulvectomy%26hl%3Den%26rls%3Dcom.microsoft:en-u s:IE-SearchBox%26rlz%3D1I7ADBS_en%26sa%3DN%26um%3D1

OH MY LORD that is a HUGE link!!!! lol!!!!

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• By julie445
• Posted July 3, 2009 at 12:59 pm
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Where was the majority of your pain located? And did the pain meds help control it? I hope you are not in chronic pain.

It seems I have never ending questions. One I think I forgot was, how long was it before you were able to drive or make trips outside the house.

I an a single mother, but I will have somebody staying with me and helping when I get home from the hospital.

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• By Jodi_ayn
• Posted July 3, 2009 at 11:52 am
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Julie,

Yes, there is still pain when you leave the hospital. I think it was about 3 months or so before I was about 75% back to normal. I got up to about 85%....but it never got much better than that. I have had frequent infections, so maybe your doctors are on the right track. The only problem with that is that it's really hard to wrap my brain around another surgery at this point. I can't imagine going through that again...it's so huge. And now I have a bunch of scar tissue from surgery and radiation.

I started getting up in the hospital after a few days and I was walking the halls with a walker before I went home. My master bedroom is upstairs and I was determined to sleep in my own bed and use my own bathroom, so I was going up and down the stairs, but only once or twice a day. I walk fine now, but it was slow at first.

I hate to say it, but I am never completely pain free! I don't know if Deanna is...I would actually like to know that...but I'm always somewhat uncomfortable. I have a 2 year old (adopted) and it hurts for him to sit on my lap because he elbows me in the gut invariably hitting my abdominal scar or one of my stomas. Also, when the nerve endings are reconnecting, you get zingers that have a distinct way of getting your attention! I had a hysterectomy before, so I was aware of that, but not like these that I can sometimes feel in my feet.

Do not fear the pain! Yes it hurts...but you can get through that. Have you ever pushed through the pain in an extreme workout? Or having a baby? Or running? It's all very mental and you can get through it. My mantra was, "This too shall pass." And the majority of it really does. What I deal with now is manageable and it's amazing what you can live with when you set your mind to it. I actually have to remind my husband that I'm completely wiped out because I vacuumed the floor because I try to keep being the same person I was before.

I love the idea of the anti-nausea patch....wish I'd thought of that! I never puked (thankfully) until my first infection 3 weeks later, but that would not have been fun.

I was on vicoden for probably 2 months after surgery. I hate taking pills and I hated feeling out of it and tired, so I basically just quit taking them. I still had some for every now and then....like vacuuming days! But I never use them any more.

I am 5'6" and before surgery I weighed 145, now I'm 125. I look skinny and I really don't like it, even though I always wanted to be skinny! Now I feel like since it happened because of having cancer, that I'm just cancer skinny! You will lose weight. But it's a good thing you like ensure. I think it was a good 5 days before I ate anything and even then it was just a sip of boost or ensure for each meal....seriously, one sip! But you don't really feel like eating and you're getting IV nutrition, so I guess it's okay. You have to let your intestines heal before you start making them work again, I guess.

I really wanted to get out of the hospital. I was so tired of being there after 10 days. So the doctor told me that I had to be able to walk the hall, be off IV pain meds, and eat. So I just worked on those goals and within a couple days I was able to go home. 3 weeks later, I got a fever of 105 and was practically refusing to go back. My husband finally called an ambulance and I had another 6 days in the hospital because of a kidney infection. I know at that point I was still on vicoden and in pain because it hurt to puke. Also, I couldn't hold down the pills so they brought me liquid vicoden from pediatrics. Every time I have an infection (I think I've had about 5 - 7) I lose weight. So I try to gain weight when I'm feeling good. I think with the colostomy, that makes it harder to absorb the nutrients.

Okay, now I feel like I've been rambling on. I remember before my surgery I was addicted to reading everything I could online and I just waiting with baited breathe for any response from someone who could tell me what to expect. So I'm trying to tell you as much as I can....and I hope it's not too much! I do recommend you having someone in the hospital with you at all times, a friend or family member, because the nurses (I probably don't have to tell you this) can not be with you at all times. You have IVs on both sides and you feel tied to the bed. You can't even get a blanket if you get cold. I am so thankful for all the people who took a shift with me in the hospital.

You can do this! It is another chance at life!
Jodi

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• By julie445
• Posted July 2, 2009 at 12:46 pm
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Jodi, forgot to ask, how long was it before you could walk? And if you took pain meds did it help with the walking?

You also mention weight loss. I am a small person and currently weigh 113 lbs, I don't want to lose alot of weight, I already expressed this concern to my doctors, lucky for me I love Ensure I guess. But the plastic surgeon and gyno/onco said my size makes their job easier. Don't know if that is true or not.

They've already been warned how I get and are ready for the sedatives in pre-op! LOL.

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• By julie445
• Posted July 2, 2009 at 12:41 pm
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I met with the plastic surgeon today. They are going to reconstruct my vagina with abdominal muscle, he said I am small so he may have to use some of the inner thigh.

I did request an epidural, hoping I get it. I also told them what pain meds I do well with and also that I needed the anti-nausea patch they put under my left ear. They said they could give me my requests. Not sure about the epidural yet. They said they would keep my pain under control. I hope that is true. I just know that I had an awful experience with my internal rad treatment.

It sounds like both of you left with continent urinary diversions. I won't. My gyno/onco said he doesn't like to do those because of the risk for increased infections. He said it would be possible to turn it into a continent diversion if I do well with infections for 18 to 24 months.

I'm starting to worry that something is wrong with me because I haven't freaked out yet over this major surgery. I know the major changes it will body to my (I am prepared and have come to terms with that). Not sure why I am not losing it but remaining calm. I'm also a nurse and have worked with patients with stomas, so I am prepared for what they look like.

Jodi, how was your pain when you were discharged? Was your pain all over? Or mainly in the incision area/pelvic area?

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