Feeling angry about parent's medical decisions.

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Hi everyone,

I'm feeling a lot of mixed emotions lately. My mom who lives with me and my partner has rectal cancer. The tumor is small enough to be operated on and has a 95% chance of remission, however my mom's decision was that she was not to be operated on. Her two reasonings are questionable.

#1. She feels that once they open you up, the cancer spreads like wildfire. Is that true?

#2. She would have to wear a colostomy bag for 2 months, however it is not guaranteed that it would be just 2 months, or if --- forever due to the delicacy of the intestine/colon issue and reattaching. She is still traumatized because my grandfather committed suicide due to wearing the colostomy bag. But this was back in the 70's and they have made so much improvements with this.

So this means that she needs to get more radiation done. We're trying the direct radiation at Sloan's Ketterings in NYC -- the type where they put you out for 6 hrs and go inside with a direct hit from the radiation. This is only 3 times. BUT --- this is not guaranteed it will work. So plan C would mean to keep taking her to radiation or chemo treatments, which puts out a lot of her daughters (us) which drive her to each appointment.

If she gets the surgery, it'll be a one time shot and the 95% has us reassured that she'll be ok. It is stage 1 and has not spread or has gone through the walls. It is the simplest and most logical route per our doctors. But she says no. Again, this would be easier on ALL of us, but because of her fear, we have to go these routes which are very challenging.

I sort of feel bad for feeling angry. I love her very much. We had just lost our father to cancer 3 years ago and now we're going through the same rigmarole again with mom -- taking her to radiation every single day and midnight calls up to the ER because of sepsis infections, etc., etc..... We would do ANYTHING for her and we are -- but is there anyone out there who can give me an answer to whether the operation would spread the cancer more?

It feels like my life has been put on hold. We had to hold off our annual vacation (which is sooooooooo needed) and we also had to make a lot of adjustments because of her decision not to undergo this important surgery.

I just need some advice, maybe a kick in the rear if need be. I feel a bit miffed. A bit sad. A bit scared.

I'm sure you all have gone through similar situations. I hope I don't sound like a selfish person. But but but... :(

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I had a client with colorectal cancer who was given 6 months to live, he lived for more than 2 years. He had surgery & treatment. Surgery, cancer and death can be difficult and scary for people. She must be a good surgical candidate if the docs recommended surgery. It's all about quality of life. There have been so many medical advances in the past 20 years, often a colostomy is only a temporary measure, but I can understand her feelings. There are only certain types of cancer that 'spread' once the body is opened. I would advise making a list of questions including asking about medical advances and speaking with the doctor, he/she would be able to answer them. She's facing her mortality and is looking at quality of life. That's what it's about: quality. With modern medicine they can do so much more today than even 10 years ago, but at least she will have a chance to survive and have quality to her life. colostomy's have also changed in the past few years, look for a support group for cancer and/or colostomy support, listening to others may help her work through her fears.
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I actually took Mom to my own psychologist so she could talk to him. She laughed and said, "I coulda' just done that with my girls!" (Her daughters.) She feels like therapy is a waste of money. She also detests any sort of support groups and even shuns senior centers - to which many of them are younger than she is! She's not "part of that group" -- in her mind.

I do not know anyone who has had this type of surgery who survived. (Which is bad.) Our close friend had bladder cancer like my dad. They both had surgery, and both died soon after. So that thought in her head alone has made her ultimate decision. I'm going to look into cancer support groups for myself (hardly any in my local area) but try to see if I can get some concrete info regarding this type of procedure. I mean, she has all the info from the doctors who have all told her it was the safest and most effective route, but she still thinks otherwise due to the passing of her husband and friend - and all within a year's timeframe.

*sigh*

I get it. I just wish she didn't base her decision on her experience, but that's very hard to convince someone when they've seen people go after surgeries. And it had really nothing to do with the surgeries itself. My father was stage 4 with other major health complications.

Thank you for the tips. I'm going to hunt around for some info and support groups. She needs something.

Appreciate it!
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Tryingmybest, that a great idea. TheBoogs could check to see if there is a cancer support group and call the person who runs the group to see if there was a woman who had that successful cancer surgery and has the warm helpful personality to help in this case.
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OK maybe this is a crazy idea but what if you could find someone who has gone through this surgery with a successful outcome and had them come and talk to her. All your Mom has to go one is her own horrible experiences and lots of misinformation. If she could hear first hand from a "real" person what the surgery entails and how it feels plus ask questions it might help change her thinking. I have no clue how you might find such a person but it might be worth a try. I hope your Mom can get over her fear and choose the surgery.
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Did your mom ever have any counselling after your dad passed away? It seems she is still grieving and feeling hopeless about the future, and that is affecting her ability to make decisions. Perhaps talking it through would help her see the positives in life and a that there is still a chance for happiness.
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P.S. And I know she has the right to choose and reject treatment, but sometimes I wish I could force her to just get the surgery done and be DONE with it completely! 95% is awesome considering.. I just don't understand that kind of mindset. Ah well.
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Yep, she says all the time, "I feel like I'm walking right behind your father with this stuff." (Appointments, radiation, chemo, etc.) The doctors have all given her "tough love" and stated that although this tumor has not spread nor has gone through the walls, that it was an aggressive tumor. He said that if she didn't get the surgery, she has less chance of fighting this. So the next best thing is direct radiation -- gives her a good prognosis -- she almost said no to THAT -- and then the doctor said, "Then you have no chance of surviving this!" And when she saw me crying, she said, "Ok, ok, ok, I'll do it."

I'm so incredibly tired, not only from the process, but from overthinking and obsessing over this. "What ifs" and negative thoughts which I have to stop. She's my best friend and the thought of losing her was always my worst fear in the world. And I know that people (especially older) are to be expected to age, fall ill and such and such. I feel like I'm sinking into a deep depression again and I have to snap out of it so I can help her.

I'm so tired.

Thanks for letting me vent. You're absolutely right -- she feels like she's walking my father's pathway....
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Your mom is only 76 and spunky? She's way too young to give up! Perhaps after caring for your dad she feels that the outcome is inevitable, so why fight. Get some stats from her doctors about what will happen if she doesn't have the surgery and the radiation doesn't control the cancer, kind of a "scared straight" approach. It's good that you and your sibs are all on the same page with this.... Good luck!
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Thanks for all your input. Mom's 76, spunky and minor health problems other than just declining from age (walks slower, etc.) --- but this cancer has taken a toll on not only her body, but her overall mental health too. SHE was the major caretaker of my dad who died of cancer. Fed him, cleaned him, brought him to radiation, --- did EVERYTHING, even watched him take his last breath. :(

And you are right! She watches all of these lawsuit commercials (plus a ton of game shows) and keeps calling this number to see if she can get a settlement on if a certain medication caused my dad bladder cancer. But they said no because he was a major smoker --- 4 packs of non-filtered Camels a day! So they were like, "No way."

A friend of the family died. She was in her 70's too. She had bladder cancer (non-smoker) and on the 4th operation, something went wrong, but nobody got the EXACT reason why. So Mom chucked it up to, "Ah see? Anytime they open you up it spreads!"

Oddly enough, all my my siblings and I are really pulling together and actually getting along, so that helps a lot. But I was thinking of having some sort of corny 'intervention-like' thing where everyone kinda persuaded Mom to get this operation.... she has a few years left ahead of her --- maybe even a decade...??

The doctors are all like, "Well, we have to respect her choices......" (Yada yada yada.) I get that. I mean, yes this is HER body, but I'm sitting here like, "AHHHHHHHH we have to stop everything and just live in oncologists' offices from now till whenever!!!" I'm so frustrated and I WILL do anything I can for her because I love her with all my heart. But but but ----- I wish she would just think for a moment and be brave and go through a minimal surgery instead of doing these HUGE tasks of a less promising circumstance.

Thanks so much for reading my problem. It helps a lot.
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TheBoogs, thanks for the update on your Mom, I've been following your story. Gosh, 95% chance of remission is fantastic odds if surgery is performed, I would definitely run with that.

But I can also understand your Mom's fear... wonder if your Mom had seen those lawyer advertisements on TV about cancer spreading if a certain surgery was performed, it would put fear in anyone thinking about any type of cancer surgery no matter how it is done.

Your best bet would be to talk to your Mother's surgeon to see what he/she feels are the prospects.
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