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Major open surgery soon... Desperately need help

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

Im visiting my surgeon oncologist for the last time Monday before my surgery on May 9th. Im a bit worse for wear atm mentally and physically. I dont think I have been this psychologically depressed ever, and im having numerous panic attacks daily. I scheduled this appointment Monday due to them wanting to talk to me again after the barrage of emails I sent to his nurse over follow up questions and suggestions I had and expressing that I wanted a 2nd opinion before undertaking a extremely invasive open surgery to remove half of my pancreas, my spleen, parts of my small intestines, possibly my gall bladder, possibly parts of my stomach, and a large portion of my stomach, along with around 7 or 8 pelvic lymph nodes. 

 
The discussion we had last Monday was not constructive to say the least. I was fed a lot of last minute details and I do not feel like they are taking into account or even bothered to look at records of my existing physical health conditions nor mental health records. When I told them I had a mild form of gastroparesis it was like the first time they were hearing about it. He didnt even know I was diabetic. I expressed concerns over such a procedure being done that will basically shut down my digestive organs and cause my diabetes to get worse and more uncontrollable. They admittedly told me that my existing conditions and abdominal pain, which will not be remedied by the surgery, may actually cause it to get worse. These are extremely important concerns because a worsen of my gastroparesis my result in me having to be inserted with a feeding tube, which is something I cant fathom. So it is possible I will be getting fed by a tube going into a colostomy bag. I admitted that would pretty much do it for me, I would lose all my will to fight this. Ive lost so much already, financially, to my job, and mental and physical health taking a noise dive. Having to move back in with my mother who has been tormenting and almost taunting me over all of this. As if its my fault all of this is happening. Does not have a compassionate bone in her body. Shes in denial and I cant talk to her to lean on her for support without her making everything into a argument and making it about her and her woes. 
 
So far this is where we are at. I have two pancreatic tumors. Theyre not benign but not adenocarcinoma. I told them regardless I didnt want to know what stage I was in for mental health purposes but he proceeded to blurt out that no matter what stage 1-4 the prognosis is poor. About 30% even at stage 1. Thats um, good to know. I wont make it to see 45. Thanks. The mass sitting on my colon was biopsied and returned as inconclusive but he said he personally was not convinced it was benign because of the swollen lymph nodes and congestion just above it. If it is benign then I may have a separate primary of lymphoma. He described the tumor mass as "extraordinarily rare." He does feel the pancreas lesions and colon activity is unrelated. My main questions and concerns is why they cant perform the surgery laparoscopic, If this will make my existing conditions worse. If the mass is benign can it be shrink by radiation and removed at a later time to avoid a invasive open procedure and having a colostomy bag and Is this curative surgery or just palliative life extension surgery. 
 
The information im being given seems to change every appointment. I was originally told the mass was likely benign, now im being told its likely not. I was told i would be in the hospital for 2 weeks. I was originally told 3-5 days, then up to 7 days, now its 2 weeks. I was originally told the spleen would be preserved not im told it likely to be removed. I was told they will start me on tylenol for pain. I thought that was laughable and insulting. Ive been on tramadol since 2013(other fact they were unaware of). If the goal is to get me moving, breathing, exercising and eating, tylenol wont cut it. I dont even take tylenol for my existing abdominal pain symptoms and I dont have a dependence on tramdol, gastroparesis is a permanent irreversible condition, im going to always need to manage the pains caused by it. I cant take my clonazepam the day before or the days after surgery. Ill have a iv in my arm, my neck, a tube down my nose into my stomach, a catheter, a epidural in my spine, and who else knows what other stuff will be stuck inside. 
 
Whatever anyone here can share with me about their experience with major open surgery it would be much appreciated. I guess I want to know how to better mentally and physically prepare for it. What you feel like immediately after the surgery. How it affected your digestive system. If you had any complications or long term changes in any way. Did it affect you psychologically. How long was your hospital stay. From 1 to 10 what was your experience with pain. How soon were you able to walk, sit up, eat solid food. Are the stomach pains, stabbing, crampy, severe? Your experience and pain level going home, being at home and what you were able to do. And also how long it took you to not fully recover so to speak but just be at a point where you were reasonably able to move around and do normal stuff. 
 
Im going to try to get a 2nd opinion but more than likely im going to go through with the May 9th procedure for better or for worse. And whatever happens to me whether fatal, or i experience irreversible damage to my digestive system and a worsening of my diabetes I will just have to live with the regret and guilt for the rest of my short life. But the one thing that is absolute is the fact that the tumors have to be removed regardless, but im wanting more options than this seemingly one size fits all method they seem to require. I was told if I backed out of this appointment I would no longer be rescheduled for another. They wont even give me time to talk to another surgeon or schedule a endoscopy biopsy of the pancreas lesions. I have no insurance so beggars cant be choosers I guess. It feels like im getting budget open surgery instead of a more skilled laparoscopic one.  I see my oncologist again monday so if there are any questions you can think of I should ask Please post them. 
 
Thank you for any help, advice, experiences, and suggestions you can give me. Im running out of time and I dont want to allow my fear and anxiety cause me to make a bad decision.
manapart's picture
manapart
Posts: 67
Joined: Feb 2019

thank you

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh Rod, you have so much on your plate right now. I'll try to answer some of your questions with how it went for me. And I looked up gastroparesis because I'd never heard of it. It's not surprising that you have it, from the sound of it. First, thew surgery itself. For something like this I wouldn't want laprascopic surgery. They need to really see what they're doing. And, while it's a smaller incision, it has it's own recover issues because they have to pump you full of air to do it. The air gets inot your system and can be quite oainful coming out over the next week or so. I'd say you're too complicated for it, you want it done right and for them to take a really good look.

The incision wasn't painful after, either time. I was quite shocked. I was stapled up and had a plastic tape over the top and it didn't bother me. When I'd go to move I'd get pains from the surrounding muscles because they've been cut and are not happy about it. But if you move slowly and carefully it's okay. The catheter will make it so youdon't have to rush to the bathroom and you'll only have it a few days. You're in there for a while because they have to make sure everything is moving through you properly.

I was home in 4 or 5 days. But I didn't recover fast because of side things that cropped up so I was back in the hospital twice after the initial surgery so you can't count on what I say.

They start you off slowly with eating. Fluids, soup, jello, then a sandwich after a couple of days. They won't let you go until you're eating well.

As for painkillers, both times they given me morphine in a pump that I could control myself. So if I wanted some I just pressed the button. If it was too soon it wouldn't give me any. But it kept things under control. Then to Tylenol after a few days.

Are you for sure getting a stomach tube? I haven't had that. I once had an NG tube when I had a blockage but I made them take it out after a few minutes. Remember that. You're in the driver's seat. You need treatments but make sure you're doing what you're okay with. It won't be a picnic. They'll show up and do blood draws at 5 am and fun stuff like that. But the lab people are usually very nice. Here, I might see my doctor once or twice after the surgery, it's not like on TV. If you have a snoring roommate or one who likes the TV on loud all night the nurse can give you earplugs. If it gets really bad you can request to change rooms.

I know you don't know this now but it really is scarier than the reality. When it's done I'm sure you'll feel like it wasn't so bad. It's not fun but it'snot terrible. They do what they can to keep you comfortable. They'll help you get up the first time and guide you to the bathroom and walk with you. You won't feel abandoned and uncared for.  Nurses are some of the best people around. I've had them give me a hug when I needed one and sit and talk for a minute when I needed that. They're very busy but they try very hard to be compassionate.

Hang in there Rod! This, too, shall pass and then we'll get to hear about your recovery! Yay!

Jan 

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

always responding and being one of the few replies I get. 90% of my issues are probably irrational and uncontrollable thoughts and emotions im having caused by me simply being mentally ill. I can understand how off putting that can be to many. There is a stigma attached and its hard to help and have patience for people like me. But to offset the negative trauma I need all the positive trauma I can get. So I just thank you for being a positive and encouraging influence in my life right now. 

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

Of course everyone is different, but here is what I remember about the whole process.  

I had a rectal tumor, initial surgery was open from belly button to pelvic bone.  Anus was surgically closed, rectum was removed and a total hysterectomy and a perm colostomy.  I was on delaudid while in the hospital so no pain.  On day 2 or 3 they determinded that my intestines were kinked and had second surgery to straighten them out...using same site as original surgery.  I requested no visitors and just slept alot.  I had a problem with food...not eating but with the smell.  I was in hospital about 3 weeks because of all this.  Going home was easy, didn't need much in the way of meds but did have a bout of depression because I didn't feel I was getting better.  I had a urinary tract infection and ended up in the hospital for a couple of days. 

You are encouraged to walk as soon as possible to get digestive system moving again.  I was encouraged to eat protiens to help with healing.  I did a small juice glass of Boost with protien several times a day.  After about 6 weeks, I was back to driving and doing all for my self.  Probably could have managed sooner, but had family who wanted to help.

Wishing you best outcome.

Marie who loves kitties

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

Yes it does sound like you are going to have some major surgery on the 9th.  With that much surgery, opening you up is the only way to do it.  They can get all this done with one opening then and do the necessary surgery in succession since you will be having different issues addressed at the same time. 

If you want to get a second opinion that is perfectly fine, but it might take you longer to get into another surgeon so you would probably have to postpone this upcoming surgery.  Make sure that you do what you will feel good with.

Remember to walk, walk, and walk after surgery.  It's going to hurt but that will actually heal faster.  When you get home you should be having a nurse visit you to check on you as well.

Remember we are here to help you get through this.

Let us know if you have any further questions.

Kim

Msboop15's picture
Msboop15
Posts: 81
Joined: Apr 2019

my heart goes out to you..,you are in my prayers. 

Canadian Sandy's picture
Canadian Sandy
Posts: 520
Joined: Jul 2016

Most of us here have you in our thoughts we just don’t know what to say in case it makes things worse for you. God bless you Rod and know that I am praying for you daily. Keep on asking for help and we will do our best. We will try and give all the positive thoughts we can. keep the faith! 

shu273's picture
shu273
Posts: 38
Joined: Apr 2019

I am sending you a link to a website. Why? beacause this guy has been there and done that and documented it in incredible detail. But, what is important is that he has made it through and beyond what you are facing. So, I think it could speed you through so much of the unknown that you are facing and help to get you past the fear and anxiety and depression. You can do this! You will do this and then you will help someone else down the line! 

http://www.cancerdad.co.uk

 

Andrea

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

I had both colon and liver resections in the same surgery last summer. It was hard, make no mistake. Bowel prep was a nightmare, as unbeknownst to us, my colon was completely blocked in two places. As a result, I ended up with an unplanned colostomy. I thought it was the end of the world and it took us awhile to find the right supplies for me. Once we did though, life became so much easier. I spent two days in ICU and another five days in the hospital. Thankfully, I have very little memory of my hospital stay, as I was pretty drugged up. I know I had an epidural for pain for five days. I also know from talking to my parents that the transition for iv pain meds to oral pain meds was nothing short of a nightmare. I also had a complication in which the femoral nerve in my right leg was stretched during surgery, so I ended up being unable to walk for quite some time. I ended up in a rehab facility for twelve days before landing back in the hospital with fluid around my lungs. All told, I spent 27 days away from home. Thankfully my leg has gotten better and I only need a cane. 

Im now facing a second major surgery. With my cancer diagnosis, I was sent to a genetic counselor to figure out why I had colon cancer at 32. They found a genetic disorder (Lynch Syndrome) that leaves me at high risk of developing more cancers by age 70. Consequently, I am having surgery on May 22 to have a hysterectomy done, complete with ovaries and tubes; remove my remaining colon, my gallbladder, and attempt to fix my leaking liver. It is expected that I will spend another day or two in ICU with a total hospital stay of a week. It was not an easy decision to make, but having been diagnosed with cancer once, I couldn’t justify leaving those organs in and playing Russian roulette. Instead of reversing the colostomy as had once been the plan, I am now going to have a permanent ileostomy. Ask yourself what you can live with, not just physically, but mentally too. Cancer leaves us all trying to make the best decision out of a multitude of bad decisions. 

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

Frown, you had to go through all of that just to get better. 

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

I’m so sorry for your struggles as well. I am so grateful for my friends and family to help me get through this. I also have bipolar disorder, thankfully well controlled. It took some time several years ago to get it under control.  I’m so grateful for my faith. Through all of this, I remember the difference between what I can change and what I can’t change. I can’t change that I have stage iv colon cancer of that I have Lynch Syndrome. I can’t change the fact that I will still have them tomorrow. What I can change is how I deal with them. I can choose to focus on The things I want to do still, from trips I want to take to seeing my nephew grow up. I have my fair share of bad days and I know I’ll have more, but I do my best every day to worry about the things I can change, because everything else is just wasted energy. 

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

You need to have utmost confidence in your drs, tho it is normal to worry about everything. Did you get a second opinion?  My surgeon understands my concerns and limitations.  He didn't explore as much as he might have during my recent surgery because I asked him to keep it minimal; that I wanted to retain normal function.  He understood, and worked with me to find a happy medium.  We've agreed that I'm going for Quality of Life, not Quantity.  (I go to Philip Paty at Memorial Sloan Kettering in NYC)

The best surgical advice I can give you is to start walking as soon as you can post-op.  That will help wake up your gut and get things moving again.

Alice

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

blocked my cell phone number and email. I guess my questions about surgery became excessive. Sorry for wanting to know as much as I can before such a major invasive procedure. Its not like I can get all of my questions in during 15 minute appointments every couple of weeks. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

That's pretty horrible. What an uncaring wench! It's true about the short onc appointments. That's why I think a forun like this is so important. Oncs only hear what they can in their short and quick appointments but don't really hear the every day stuff. Knowledge is power! It helps make the fears stay at bay.

Jan

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Also they should have you in with a psychologist immediately.  Cancer can be terrifying and clearly you are struggling with anxiety and they need to help you deal with it.  

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Contact a patient advocate ASAP.  I made the mistake of not doing that before my surgery and I ended up with a permanent ostomy while I was under anesthesia that I would have said no to.  YOU HAVE THE RIGHT TO KNOW how all of these things will change your body.  You have to gather all of your questions and ask in one sitting.  Don't call every time you think of a new question.  Gather 5 or 6 questions at once.  They need to have a "surgical meeting" with you to answer all of these questions before they do the surgery.  Mine was over an hour long.  

Also there is a medication that keeps cancer from spreading during surgery, I was not offered that medication.  

Butt's picture
Butt
Posts: 324
Joined: May 2018

I am not saying blocking was acceptable. Medical professionals can be very busy. They don t want to deal with patients who are annoying. They prefer get something done and not hear a lot from someone. They can persive it as harassment based on the way a patient is coming across. I agree a list of questions that is well composed would be appropriate before the surgery. They have to answer them. They usually have a hard time with a patient who faces some psyciAtric issues at the same time because it is not there area. In my local cancer center some  older patients have dementia or a clear cognitive decline. They usually come with family members or care givers. Docs and nurses usually communicate with the third party. Butt.

Canadian Sandy's picture
Canadian Sandy
Posts: 520
Joined: Jul 2016

Thinking of you and praying all goes well. 

myAZmountain
Posts: 279
Joined: Apr 2018

Hoping your surgery is a success and you recover quickly! Keep fighting!

Joan M's picture
Joan M
Posts: 383
Joined: Oct 2016

Hope your surgery and recovery go well.  

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