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.