total pelvic exenteration

[3shewolf8]

Hello. I only posted one other time on here, and it was asking the best way to support a friend who has colon cancer. Last week, my friend found out that she has once a day for 6 weeks treatment of chemo and radiation to find out if her cancer shrinks enough for surgery. If so, she will have a total pelvic exenteration. If not, the surgeons told her, "at least we bought you some time". I just read what the surgery consists of, and I am heart broken for her. She is going to have some seriously radical emotions no matter the outcome at the end of her treatments. Has anyone on here experienced, or know someone who has had this procedure?

[jhocno197]

They wanted to do that surgery on my husband, but his cancer was/is too advanced & attached.

It is such a huge surgery. Has she had a second opinion?

This is all the instances where this is discussed in this forum:

search.php?keywords=Pelvic+exenteration&fid%5B0%5D=1T

I am so sorry for your friend.

[Marejenny]

I am so sorry for your friend. The surgery sounds pretty intense. I'll keep you both in my prayers and hope for the best.

Mare.

[3shewolf8]

thank you for the prayers and good thoughts for her. Yes, this is her second opinion. The first opinion was do nothing. It was too far gone and the chemo did nothing to shrink the cancer and it continued to move and wrap itself around other organs. She was hoping the 2nd opinion would be a lot better. It's not optimal, but at least there is a slight chance, by going through a different chemo regimen along with added radiation, the cancer may shrink enough for the only surgery that would keep her alive. I'm so scared for her, she is not returning calls and barely answering texts. I don't even pretend to know how she must feel, so I am going to back off and give her the space she needs, but I will keep sending happy cheerful messages to her, and wait until she is ready to talk to me. She has family to worry about, and I would NEVER intrude on that. they all need to have time to come to grips with this.

[weisssoccermom]

Years ago, there was a woman whose husband had this surgery and he had a REALLY difficult time recovering from it....both physically and emotionally. Honestly, for rectal cancer (which I'm assuming your friend had), the statistics after this surgery aren't great.
We had another person on the board, Gaelen, who refused this surgery...simply because of what it would do to her. Pat (Gaelen) put up with a lot during her journey (she had a lot of surgeries, a colostomy and, in the end, a urostomy) but she was really adamant about NOT having this surgery.
I wish your friend well. If she does decide to have the surgery, she is going to have a long and tough road ahead of her.

[3shewolf8]

thank you. She was diagnosed with colon cancer July '16 during her first colonoscopy at age 50, and it was on her birthday. As of right now, she has said that she will get the surgery if the chemo and radiation shrinks it enough. I've done a bit of research and have read things from patients about the surgery itself and the healing process. The choices she has to make are going to effect her life exponentially. She's so weak and depressed now, that I'm not sure she has the energy or the will to deal with such a radical surgery, but the alternative is to do nothing. I guess in 6 weeks, we will know what her decision is for sure, or even if she gets to make one at all. If the cancer doesn't shrink, it is completely out of her hands.

[3shewolf8]

Update. My friend is in terrible pain, can barely sleep and is so weak she can barely make it to the bathroom on her own. She had a positive attitude up to the time she was told about the surgery. The positivity is gone, it seems like her will to live is gone as well. She won't do any type of counseling and her family is going through major financial problems now because she was the primary bread winner and, of course, insurance only pays 60% of average weekly bring home pay. Her oldest son is upset, not because she is so ill, but because she stopped paying his phone bill and they are not getting Christmas cash this year. (he's almost 30 years old). Her friends have rallied around her and we are all doing what we can to raise money for them, but $300 here and $600 there is just a drop in the bucket. But at least we are putting drops in there. We are going to all chip in and get them a catered Thanksgiving dinner. I can't believe this all happened so fast. It has only been 18 short weeks since she was first diagnosed, and she is facing such a bleak future. I am still being positive that after the surgery, and after she is healed, we are going to have a girls night on the town and really whoop it up. When I mention it, she no longer smiles and agrees, she doesn't acknowledge the plans any more. My heart is broken. thank you all so much for letting me vent. do any of you know if there is a forum for friends/families that I could go to for support. You are all so awesome and I pray for all of you to have complete recoveries.

[Yolanda]

She sounds like she's getting what I got. YES, there is recovery possible! I would strongly recommend her following a strict healthy diet with zero "treats" and "cheats" as fueling your body properly is a major part of a: supporting the chemo and b: healing from the surgery.
They carved a freaking train tunnel through me. I kid you not, I got him to take pictures, and you could have driven a model train from my belly button to my thighs, through the middle. Everything south of my vaginal wall was sliced away, my uterus and pelvic floor, tons of the flesh around my rectum and anus. Then they took 2/3 of one side of my stomach abs, the side that didn't have the colostomy bag on it and used that to fill the hole and rebuild my pelvic floor. I need to relearn how to pee, more or less, and hold my pee too. I'd had emergency colostomy surgery a few months earlier so i could eat.
Yeah, the pain she's going through sucks everything away. No meds can really touch it. it'll bring you to the bottom. Your friend will need extensive help with quality of life, like actually someone to play housekeeper and butler and mommy for now, and after the surgery too.
I did most earnestly try to kill myself several times in the process, but well, I guess I'm not allowed to escape? The freedom when I woke up from surgery. Well it just didn't hurt as much anymore, even though the meds were still rather pointless. What DID hurt, I recall, was my shoulder. They had me on that table 6 hrs in an awkward pose and it threw out my shoulder! It wasn't till day two I got someone to massage it. It was the spiritual advisor hired by the catholic hospital and I said "hey, you can't save my soul but if you'd massage this shoulder you could save my sanity." She did! Then the next morning I was crying about it again, saying if only someone could massage it, when one of the nurses said she would, it was part of her job. Boy did I need that.
Seeing the results on your tummy, it's a shock. I woke up in that hospital in a fog from meds, two weird things grabbing my shins over and over (pneumatic squeezers to prevent clot formation) and a massive horrible ugly red zipper full of frankenstein staples, twice the size of the previous one. I couldn't see my butt myself, but the doctor had kindly agreed to take some pics including one of it finished and he shared them out to my phone so I could keep them. Everyone else kept "checking the flap" and I got used to rolling over or lifting my legs or something.
Even so, the freedom from the grinding pain of the tumour meant I felt like I had new-found energy. I was even dancing, ever so lightly, out of pure joy at feeling better.
The flap was really hard to heal. The two end points of the oval of skin just didn't want to close up or stop leaking that orange blood fluid, called lymph. I went home laying on towels and wearing massive period pads to try and keep it dry and catch the blood, etc. I found a salve then, one day, in a local store, made by a local woman. It wasn't sterile and I started to show sign of infection so I added tea tree oil to it (fixes anything, I swear it) and that salve had shepherd's purse in it. Now you see, I studied healing herbs. Not that "miracle cure" kind, but the first aid kind. the sort of thing you need on-the-spot for minor ailments and injuries. Shepherd's purse can close a wound so fast it seals in infection. That stuff works instantly. It did so on me too. Even so, it still took 2 wks using that salve before the wound stopped weeping.
8 wks after surgery the astonished plastic surgeon declared me healed enough to sit on it, ride a bike on a big seat, jump around, etc., as I wished. She said a couple of her other patients weren't healing so well and she was worried for them. It's pretty crucial to get that flap to heal right, it's the difference between life and death with this kind of surgery. Literally. From what I read, failure to heal properly results more often in death than being weaker or crippled.
I did have complications. One kidney swelled up due to a minor nick in the ureter line. that's the line between kidney and bladder, and it inflamed and stopped up the process, leaving the kidney swamped and swelling. Oh my damn, that's pain. But here's the thing about pain, it's just electricity. The stress of it certainly does some harm, but it's not harm in itself, pain, it's just the alarm bells. Like being in a building when you can't shut off the fire alarm. it sucks, but, well, it can be endured. When they started putting the cystoscopy up my ureter I really thought maybe this pain could kill me, or would my head just explode from it? But nope, it didn't. I just was even more tired and my eyes were swollen from tears and my nose plugged from same and well, same old crap, eh? they did fix up my kidney and when they returned 3 wks later to retrieve the stent, it wasn't painful at all really.
So yeah, someone on here has had this surgery, me. There are amazing plastic surgery techniques these days to rebuild you, and it's survivable. Also, I have been eating a 95% paleo diet for four years, even to the extent of bringing in all my own food in the hospital. I blame this entirely for my speedy healing and strength. So your mileage may vary.
Nope, it ain't easy. but it isn't impossible either. Plus which, you get an angel's butt. No, like barbie, you get the anus-free butt of an angel! Just don't bend over, the lighter ab skin in the middle makes it look like a target more than ever! You also get the newest fashion in tummy tucks, vertical tuck! google about the VRAM flap perineal rebuild. That's the one they gave me.

[weisssoccermom]

Yolanda,
I have a question....did you also have your bladder removed? It doesn't sound as though you did. A true pelvic exenteration will remove the bladder as well as the urethra and all the muscles surrounding those organs as well. The patient is not only left with a permanent colostomy but also a permanent urostomy. In some instances, one kidney may also be removed (depending on the location of cancer spread). The removal of the muscles that hold the bladder in place is not easy....even women who have pelvic sling surgery to just tighten that muscle have problems.

You sound like you have been through a lot and you should be commended for undertaking that extensive surgery. Hopefully your recovery (when did you have it) will continue to progress and things will get better for you everyday.

[Yolanda]

Yolanda,
I have a question....did you also have your bladder removed? It doesn't sound as though you did. A true pelvic exenteration will remove the bladder as well as the urethra and all the muscles surrounding those organs as well. The patient is not only left with a permanent colostomy but also a permanent urostomy. In some instances, one kidney may also be removed (depending on the location of cancer spread). The removal of the muscles that hold the bladder in place is not easy....even women who have pelvic sling surgery to just tighten that muscle have problems.
You sound like you have been through a lot and you should be commended for undertaking that extensive surgery. Hopefully your recovery (when did you have it) will continue to progress and things will get better for you everyday.

No, thank God, I got to keep my bladder. Believe me, that first time I got up to pee was a great relief to have that choice. I was thinking last night, to mention that my tumour shrank 80% during capecitabine and radiation, which means I'd had a 5lb mass before that! So maybe I'd have lost all that too, they were being pretty poker-faced with me about the maybes, probably to prevent the level of despair your friend is suffering. I suggest you use similar tactics of pressing the positives, like how I'm surviving almost the same situation, to give your friend hope, rather than looking for assurances to give her. It's not fun being crippled, losing important functions. Maybe your friend isn't better off, but who can make that decision? Not you, nor really her, only someone who's lived it and either found it intolerable, or discovered there's life after cancer and that, in spite of messing with urostomy and colostomy pouches, there's still beauty in a sunrise, still a way to get your toes in the sand, still beautiful geese flying overhead. Why do we live? Why are we here? Questions we cannot answer, but keep trying to. What's your friend got to live for? Can you help her find reasons to fight? I'm fighting because I found a plan to change my life from this dead pointless suburban cage to something interesting and exciting. I plan to build a school bus into a mobile home, use the funds from my house to get out of debt, and go exploring till it kills me. But I worry daily that I'll lose so much function in this fight to merely save my life, that I'll have no ability to live that life. Then? well I don't know. it makes me cry to think of it. As her friend, it's not enough to go drinking after she heals, that's not hope enough. You need to start saving up enough to take her on a vacation or something similar. What's she always wanted to do? Can you help her make it possible? Give your friend hope, tell her you've heard of people recovering from what she is going through, fluff the truth a little so she has hope. Give her a plan, something to daydream about "when I'm better I'm going to..."
If she doesn't take the best care of herself possible, with support from the other humans in her world, she simply won't beat this. She won't do that if she doesn't see the point. It's harder to live than to die, after all. Even as hard as dying may be. If I could only rewrite the past this hated belly bag would be gone, but since I can't, there's this: https://www.youtube.com/watch?v=jV1_6Trm840 I find it helps me accept the new reality.

[MissMolly]

Shewolf8:
As someone myself who is on the final length of life after years of fragile health and also occupying a body riddled with pain, I offer that you take a less energetic approach with your friend.

For any person facing a life-threatening illness, there can come a point where there seem to exist two realities: The reality and day-to-day life of those who are healthy and the reality and day-to-day life of the one who is gravely unwell.

I describe this inflection point using the analogy of driving down a interstate freeway. The healthy bodied continue down the interstate at 60 mph, a straight plane trajectory. In my illness, I have had to take a detour exit off of the interstate, a curved bypass at a reduced speed of 15 mph to a destination unknown.

Your friend may be feeling this change in her reality in facing her diagnosis, therapies, and horizon of an uncertain pelvic exteneration. Your friend may be feeling as through she has taken an exit ramp while you continue with life down the interstate freeway.

Another way of looking at the life of a person with serious illness is through the lens of a football game. Spectators and players engaged and enthralled in the excitement of the game. On the sideline, sits the person with serious/life-changing illness. Life continues on seemingly without interruption. It is a surreal feeling, as the person with a life-threatening illness is now a passive observer and less an active participant. The emotional impact is one of deep isolation, a deep divide.

Unrelenting pain is an experience that can only fully be acknowledge by those who experience it. This is pain that has no end point and no reprieve. Although my pain cannot be seen on the outside, it fills every fiber of my being and every neuron in my brain - it is all consuming. Narcotic medication lowers the volume of my pain experience but does not remove it. Narcotic medication allows me a space of time where pain moves from all consuming to a sustain nuisance. I am on a hefty narcotic cocktail of Fentanyl and dilaudid, enough to knock out a herd of zebra. And, yet, pain racks my body.

That said, I urge you to approach your friend with a softer presence. Although you mean well with your encouraging rally's of a "girl's night out" when she is recovered, you are not tapping into your friend's true needs.

Your friend's true needs are more a focus on support in this immediate moment and less on support in the distant horizon - which may be a horizon that she can barely discern. Your friend's lack of a smile when you mention "girl's night out" is a polite non-verbal expression to you that she doubts of her future to be able to attend to such an event. My advice: Meet your friend's immediate emotional and physical needs.

What do I want most from friends and family who visit and interact with me?

A calm, quiet, and comforting presence. Because of the pain that I experience, even conversation with another person is added noise. Be respectful and offer a calm and quiet presence when conversing with your friend. Be comforting in your words and actions. A touch of a hand, a gentle and sustained hug, even a foot massage - each add an element of human connection.

I do not appreciate boisterous visits where friends regale to me of their week's adventures and upcoming plans and activities. Can they not see that I have difficulty even standing and walking to the bathroom, while they are telling me about their upcoming trip skiing on Mt. Hood.

Offer to read a poem or book with your friend. I have one friend who comes to visit me and each visit she reads a chapter of book. I have limited attention to read as I did before, and I appreciate her being a personal audio-book. She is attentive to keeping her voice quiet and to observing me if I am uncomfortable or if we need to stop.

I appreciate small gifts wrapped in tissue paper. A pair of fuzzy socks. An adult coloring book with brightly colored pencils. A tube of lightly scented body lotion. A basket of assorted herbal teas and a ceramic mug. A pair of cozy pajamas. A few assorted, popular magazines.

I appreciate a car ride. Riding aimlessly around the city, just to get out. Riding to a city park. Riding to the Reed College campus. It is important to get fresh air and a change of scenery for one's mental health.

Personally, I do not want gifts of food. The colliding smells of foods can be un-welcomed.

I do appreciate it if people pick up for themselves as they leave a visit with me. If I have a few dishes in the sink, I appreciate it if friends and family will take the time to wash and dry the few dirty dishes. I appreciate people helping me with managing my paperwork and organizing my bills, as my attention span is less than it used to be.

Most of all . . . . a calm, quiet, and comforting presence.

Most of all . . . a listening presence. I appreciate friends and family who will listen to what I need to express, even if the topic is uncomfortable for them to listen to and process. There can be a profound sharing between friends when faced with serious illness. Do not be afraid of real conversation. Do not divert a conversation by saying, "Oh, let's not talk about this. You will be just fine."

Serious/life-threatening illness is a personally isolating experience. Sitting with visiting friends, I can feel particularly lonely. How is this, you ask? The isolation comes from the innate experience that my life's reality is no longer that of my friends and family that surround me. Be sensitive to this dissonance that your friend may be experiencing.

Being a true and trusted friend to your friend's immediate personal emotional and physical needs is the greatest gift that you can offer. Your friend is inviting you into her life at a difficult crossroads. The shared experience between the both of you is as real as it gets if approached with sensitivity and care.
- Karen -

[3shewolf8]

Thank you both so much. the information that you have passed on to me will make a world of difference to the way I behave around my friend. You are so strong and such fighters. the suggestions as how I should be around her, how I should treat her, how I need to calm down and only think of supporting her in the now, not in the future, and not to talk about the active part of my life. I am so very, very grateful to you. I almost started to tear up because now I know that she REALLY can survive this ordeal. An audio book is a fantastic idea. She was an avid reader, and I bet she would love it. I can't tell you how much respect I have for you. I used to think that I was tough, until people I know had to fight this fight. YOU are the true warriors and some of the toughest people around. Keep fighting.

[weisssoccermom]

I sent you a PM last week....not sure if you saw it.
Just an FYI that it is waiting for you to open.

[Ratepo]

I rarely post here anymore though I used to be a frequent visitor. However a reply here from someone whose father had more or less had this operation. I do realize this operation can be more extensive for women. However my father has no prostate, bladder, rectum anymore and also lives with a colostomy and urostomy. Sounds fun doesn't it? Moreover the operation failed as at the end of the numerous hours taking operation the surgeons found there were tiny spots at his lower pelvis that they couldn’t get rid of. They have been hammering (literally hammering) at his sacred bone to remove as much as possible.

Several hours later we arrived devastated at the hospital to find out the nurses told my dad that the operation had been successful. So as my father was gaining consciousness we were ‘lucky’ enough to disappoint him that they couldn’t remove everything. You can imagine these moment were hell on earth for us. Moreover some days later we had a talk with one of the surgeons and he said that if they had knew this they probably wouldn’t have operated him.

Now, here comes the good part. This operation was October 2015. Since then my father had no treatment with chemo or whatsoever and he is still alive, playing golf, going on holidays and enjoying life. I just want to tell you that you always have to keep faith or hope or whatever you may call it. We do truly know that my father won’t get old and there is a chance he won’t make it another year but on the other side that’s what docs have told us at least 3 times since his diagnosis.

[Greenish]

MissMolly, that was perfect. I wish I could cut and paste what you said and send it to my friends.