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Cancer but not treating it

Posted by shorthairptr66 @shorthairptr66, Aug 2 3:34pm

I was diagnosed with inoperable Liver Cancer in Oct 2024 but decided to leave it alone. I've always said that if I ever got cancer I am not having chemo. So now that I do I'm just going to live my life and hope for the best. I'm almost 60, single with no kids. I lived my life. My decision was made basically because I have severe arthritis (literally head to toe) so if I do beat cancer I'll still have severe pain. It's the arthritis that's keeping me from playing sports. Not the cancel.

I am great with my decision. Whatever happens happens but right now I'm feeling good and doing what I want.

So the reason why I'm posting this here is I'm wondering if anyone also decided not to get treated for their cancer and just like the board says "if you just want to talk"..

Be happy and be well

Interested in more discussions like this? Go to the Liver Cancer Support Group.

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shorthairptr66 | @shorthairptr66 | Aug 3 11:33pm
In reply to @gingerw "@shorthairptr66 I deal with multiple myeloma and end- stage kidney disease. I am on treatment for..." + (show)
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@shorthairptr66
I deal with multiple myeloma and end- stage kidney disease. I am on treatment for the MM, and daily dialysis for the kidney issue.

At the start of dialysis, 3 years ago, I made the decision to not move to any other modality of treatment. If this current treatment cannot continue for some reason, dialysis will be stopped. Like you, there is peace and empowerment in this decision.

Being single, have you made your wishes known, and end of life plans? Perhaps a visit with a palliative care nurse, or the social worker at your cancer clinic, to firm up any holes in your plans?

How is your circle of friends and family supporting you? Have you had to unfortunately shut some of them down if they will not cease to try and change your mind? That has been happening in my situation.

This is a powerful topic, and your are brave to take this on, here.
Ginger

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I updated my will and spoke with my brother in detail what to do.

Obviously nobody agrees with my decision but they understand it.

I talk to whoever wants to talk to me. I haven't shut anyone out of my life. I'm the beginning I distance myself from a lot of people because I felt like a broken record repeating the same thing over and over. People understood and backed off and told me when I'm ready they were there. That's exactly what I needed. That's why on Facebook I posted it once instead of repeating myself. Once it got out of my head I felt better.

Everyone will tell you the same thing (and this goes about everything) never ever go down the Google rabbit hole. It's dangerous and will only make you feel worse. That's what I did and I'm guessing everyone else.

You know what I mean 🤣

Thanks

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shorthairptr66 | @shorthairptr66 | Aug 3 11:38pm
In reply to @covidstinks2023 "shorthairptr66, Bless you. My Mama made the same decision after being so sick and weak from..." + (show)
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shorthairptr66, Bless you. My Mama made the same decision after being so sick and weak from 2 chemo
treatments....she said, "No more". The doctor was not happy with her....with that said, Chemo was all he
could offer her and I think he truly meant it for good. She told him she would take pain medicine, but, she wanted to live and do some things and not be bedridden from Chemo. I so admired Mama's tenacity to fight
and live as long as she could.

Mama had bone cancer....very painful. She lived almost 3 years with no treatments. When she went home to
be with the Lord, I called her oncologist and told him she had passed away. He told me that the average person
with Chemo would only have lived 11 months. God allowed my Mama to enjoy her birthdays, Thanksgivings & her last Christmas with us and see her last grandchild born before she went to her eternal home 3 months later. We even went shopping one day, which she loved!

Please no negative comments about this. I think it has to be everyone's on personal decision. She had heart
issues and was diabetic and had a hiatal hernia repair and could not throw up since that surgery, so Chemo was not a good fit for her. I personally, am glad she changed her mind. We got to enjoy some quality time together
and she got to do some things she enjoyed before the end.

Praying for you and respecting your opinion my friend. Blessings & Prayers....

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I love that she was able to spend birthdays, holidays and shopping on her terms before she passed.

It's definitely not normal to say no to treatment. That's what people can't get their head around.

Love your story.. Made me feel warm

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kayraymat | @kayraymat | Aug 4 4:27pm

Good for you.
We should be able to decide what to do with our own bodies.
I have a DNR & a Living Will & also will never have chemo.
I do believe there are 5+ states where you can die with dignity;
CA is one, but I believe you have to live there for a certain length of time.
You might read Dee Pack Chopra's book on death as just a transition to another phase of existance.

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razorsharp | @razorsharp | Aug 5 2:54am

I wish you all the best young lady, if that what you want, seeing you have been in pain most of your life having Chemo Treatment may fix the Cancer which I can tell you is no fun it has turned me into a real mess which I will never recover from > but as you said, you will still be in pain from your Arthritis which on it own is very very painful.
you are a very brave young Lady

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shorthairptr66 | @shorthairptr66 | Aug 10 2:08pm
In reply to @triciaot "@shorthairptr66 I certainly don’t think I understand your situation or know what I’d decide if I..." + (show)
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@shorthairptr66 I certainly don’t think I understand your situation or know what I’d decide if I had the same.

There is a new device just approved for rheumatoid arthritis that might help you for now.
https://www.newscientist.com/article/2490791-vagus-nerve-stimulation-receives-us-approval-to-treat-arthritis/

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I do not have rheumatoid arthritis. I was recently diagnosed with inoperable liver cancer. The reason why I am not doing anything about it is if I was only dealing with the cancer I probably would have more fight. Cancer is just another issue. I have osteoarthritis in both knees, lower back, right hand as well as a bone protruding (dr said I was probably born with it but its worse due to arthritis) , severe spinal stenosis. That's just the arthritis problems LOL.

That's why I made my decision of not doing anything. I am not going to say "Yeah I beat cancer" while being pushed around in a wheelchair.

thanks

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shorthairptr66 | @shorthairptr66 | Aug 10 2:19pm
In reply to @mir123 "I'm glad you are getting comments. I can empathize. I've had chronic pain and organ damage..." + (show)
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I'm glad you are getting comments. I can empathize. I've had chronic pain and organ damage from a severe illness when I was 21. I'm now 71! I was able to live a good life, work, and have a family. But the pain management takes a huge amount of energy. I have numerous co-morbities. In my sixties I began to realize that I wouldn't treat the "next" illness aggressively. I have a rare breast cancer that was treated in a moderate fashion--lumpectomy, short course of radiation, and aromatase inhibitors. Rather to my surprise, I feel good and am fine three years later. But I've made it clear to doctors and family I won't treat a recurrence with chemotherapy. However, your pain level is concerning. I have a palliative care doctor I consult with. And my pain management has improved since the breast cancer. Oncology, and in my case nephrology, can be more willing to treat pain effectively than a PCP. Do you feel more can be done for the arthritis? Palliative can be supportive, so I suggest it if you need it. Wishing you all the best.

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The problem is I can't fix everything. Meaning, I never had surgery and can't say I fixed anything what I did I was able to live a normal life. Fast forward to many years later it is still painful but not as bad. If I fix a knee there's always the back. If I fix the back and knee then there's the neck. Due to the location of the back and neck I don't trust any doctor. I've consulted with many doctors and the risks are too dangerous. If you replace a knee the risks are surgical related (example blood clot, etc). You can never predict BUT with the neck and back if they make a mistake cutting or something during the actual procedure the result is possible paralysis. Living alone I can't take that chance so I live in pain but I learned to take steps in dealing with it. Yes, at times it is much worse (weather or lifting garbage, etc) but I am dealing with it.

As I mentioned with the multiple issues now I have cancer on top of all that. At 59 it's enough. I don't want to cripple my life any further.

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shorthairptr66 | @shorthairptr66 | Aug 10 2:29pm
In reply to @gingerw "@shorthairptr66 Last night/early this morning I first responded to you. I was on my phone, and..." + (show)
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@shorthairptr66
Last night/early this morning I first responded to you. I was on my phone, and now on my notebook.

Here is a link to a palliative care discussion here on Connect: https://connect.mayoclinic.org/discussion/the-importance-of-comfort-care-palliative-care/ There may be some good information there for you
Also, a discussion about talking frankly about living with advanced cancer may hold some thoughts you can relate to: https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

If you do not have an advanced directive in place, I encourage that. More importantly, a Physician's Order for Life Sustaining Treatment is a document, actually a portable doctor's order and signed by a Dr, that spells out what you want done if there is an emergency. I keep a copy in my car and at home.

I sincerely hope you don't think I am being to "in your face" about your post. It is because this is a topic dear and near to me, one that has occupied my mind before. So, it would be my honor to support you however I may be able to. Yes, this could have been said in a private message. It is important for all of us who face our situations with courage and strength like you do, to know there are many who will stand with us!
Ginger
Al

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I just logged in on my computer. Previously, all the communication was done on a little cellphone LOL . It's much easier to read and reply on the computer..

I definitely with check out the link. Thanks..

I am an open book and I love that the replies are honest and truthful. I know I am not going to agree with all of you and visa versa but that's what makes the world go around. The only way we learn is by open discussions. I didn't post my decision to get likes I posted because it is unusual. It is definitely NOT the norm. Maybe someone else is thinking the same thing but afraid to say it out loud. I come here to discuss.

I remember an exgf of mine saying "If I didn't have chemo I would not be here talking to you". That is very true. My mom said the same thing. That's why my decision is very unusual to most.

A few months ago I found out a neighbor growing up had cancer. He did everything the doctors suggested and they told him he was cancer / tumor free. A few months later the tumors came back worse and he died from it. He told his sister "I wish I lived and spent more time with my family than going through the chemo and being so sick."

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shorthairptr66 | @shorthairptr66 | Aug 10 2:31pm
In reply to @pml "Hi, I admire you for doing what you know is right for you. My husband had..." + (show)
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Hi,
I admire you for doing what you know is right for you. My husband had lung cancer. He did have a few infusions of both Chemotherapy and Keytruda. The side effects were so bad that he almost died. After that, he refused to have anymore treatments. They weren't happy with his decision. These treatments cost $25,000 per infusion and when he decided to quit them he had just been approved by the insurance company for 10 more months of treatment. He received two infusions per month. However it was his decision. He ate healthy and continued to see the cancer doctor for medications and oxygen. We prayed together a lot also. My husband died last July after living with lung cancer for 14 years.

I wish you the best and will say a prayer for you.
PML

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Sorry to hear about your husband. His decision gave the 2 of you 14 more years. That's amazing news. I love that.

thanks.

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Mentor
Miriam, Volunteer Mentor | @mir123 | Aug 10 2:59pm
In reply to @shorthairptr66 "The problem is I can't fix everything. Meaning, I never had surgery and can't say I..." + (show)
Profile picture for shorthairptr66 @shorthairptr66

The problem is I can't fix everything. Meaning, I never had surgery and can't say I fixed anything what I did I was able to live a normal life. Fast forward to many years later it is still painful but not as bad. If I fix a knee there's always the back. If I fix the back and knee then there's the neck. Due to the location of the back and neck I don't trust any doctor. I've consulted with many doctors and the risks are too dangerous. If you replace a knee the risks are surgical related (example blood clot, etc). You can never predict BUT with the neck and back if they make a mistake cutting or something during the actual procedure the result is possible paralysis. Living alone I can't take that chance so I live in pain but I learned to take steps in dealing with it. Yes, at times it is much worse (weather or lifting garbage, etc) but I am dealing with it.

As I mentioned with the multiple issues now I have cancer on top of all that. At 59 it's enough. I don't want to cripple my life any further.

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Mayo has a good book on pain. I got it some years ago and still follow certain suggestions. As you say, it is more about how to live with pain than to eliminate it. No perfect solutions, but numerous things help me some.

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razorsharp | @razorsharp | Aug 10 8:54pm

Hi Shortyhairptr66
Sorry for my little mistake about what you have, But I fully understand where you are coming from, I am 80 Yrs old & I am trying to live with Liver & Pancreatic, but there have been many time I say to myself WHY am I going thought all that Chemo & all the other stuff I put themself though, I'm not
going to get anything out of it or ever be the same as I was years ago, So why ? it is really a waste of time . Now back to you, If you have had all those other problems for so many I fully understand Why you are thinking that way & Why you don't want the Cancer Treatment or the opp, . you will come across lots in here telling you to pray to God or they will pray for you and other stuff which I find is a joke because they really don't know what you have put up with for many many yrs. Anyway Buddy you do what ever YOU think is best for YOU .

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