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Talking Frankly about Living with Advanced Cancer

Posted by Colleen Young, Connect Director @colleenyoung, Sep 1, 2017

Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)?
This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It's not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.

Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.

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

anto1nette | @anto1nette | Apr 16, 2022
In reply to @leighs2011 "i think it helps to read how other people are trying to deal with the same..." + (show)
@leighs2011

i think it helps to read how other people are trying to deal with the same problems. i think it makes me realize other's have the same thought and feelings and know we are not the only ones. i have had pancreatic cancer since 2015 which is a miracle i am still here to me. i was NED for almost 3 years and now have a recurrence and mets in my lungs. At first another Dr ws able to ablate 5 mets but now there are 20 small ones and about 5 are growing slowly so that makes me feel guilty. There are always people who have a harder life to live or easier one than we do so comparing is not helpful. What i think helps is that you learn from each other how to look at things differently and hear ideals that help you put it all in perspective. i am 72 and old age is when we typically get cancer. But when i hear of younger people getting it it is tragic. My oncologists said even if he had a crystal ball he couldn't say what kind of road lies ahead. It is like the blind leading the blind sort of. Take it one day at a time i guess.

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My best friend lost her husband to bone cancer within the last year. NOW my husband has pancreatic cancer. The best advice she gave me was ONE DAY AT TIME. It’s a long journey.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 17, 2022
In reply to @anto1nette "My best friend lost her husband to bone cancer within the last year. NOW my husband..." + (show)
@anto1nette

My best friend lost her husband to bone cancer within the last year. NOW my husband has pancreatic cancer. The best advice she gave me was ONE DAY AT TIME. It’s a long journey.

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@anto1nette Welcome to Mayo Clinic Connect. It must be distressing to be placed into this new role, even if you have taken some training for it.

There is a group here on Mayo Connect that is for caregivers. Perhaps you will find a few conversations that will "speak to you" and offer ideas and support?
https://connect.mayoclinic.org/group/caregivers/
Ginger

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Apr 17, 2022
In reply to @leighs2011 "i think it helps to read how other people are trying to deal with the same..." + (show)
@leighs2011

i think it helps to read how other people are trying to deal with the same problems. i think it makes me realize other's have the same thought and feelings and know we are not the only ones. i have had pancreatic cancer since 2015 which is a miracle i am still here to me. i was NED for almost 3 years and now have a recurrence and mets in my lungs. At first another Dr ws able to ablate 5 mets but now there are 20 small ones and about 5 are growing slowly so that makes me feel guilty. There are always people who have a harder life to live or easier one than we do so comparing is not helpful. What i think helps is that you learn from each other how to look at things differently and hear ideals that help you put it all in perspective. i am 72 and old age is when we typically get cancer. But when i hear of younger people getting it it is tragic. My oncologists said even if he had a crystal ball he couldn't say what kind of road lies ahead. It is like the blind leading the blind sort of. Take it one day at a time i guess.

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@leighs2011 I am 70 years old and was diagnosed with endometrial cancer at age 67. It's hard not to compare my diagnosis and story with others and feel that maybe my cancer and journey are not all that bad. A psychiatrist once told me that this is my journey and my life and so feeling the way I did at the time about my circumstances is valid. I did not understand that at the time but I do now. I feel blessed to have insurance and the means to get the cancer care that I do. One day at a time, sometimes one hour at a time.

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jo16 | @jo16 | Apr 17, 2022

I find it helps to narrow my scope and stick with short distances and small time frames. When people start making elaborate plans and grand gestures I know they mean well but they don't realize we pay for these things with more exhaustion. I am a baseball fan and made it to some games last year but now I watch on my TV with my son or a friend over. And my husband who is always at my side...I think I can find happiness by keeping it small and the world will have to take care of the big things from now on. Thank God I lived a full life. No regrets and I did what was really important to me and I've let the rest go. I wish you all peace and comfort...

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makatak47 | @makatak47 | May 21, 2022

Hello, I was recently diagnosed with a large tumor near my anus, and it has stage 4 cancer. It has spread to some bones and a slight amount to my left lung. Is this a death sentence, or can chemo stop it and, one day lengthen my life. I am a 74 y/o male, so I know this works against me. I met a gentleman at the hospital that said chemo wasn't near as bad as it was a few years ago, and he had been healthy for several years after several rounds of chemo. Do I have a chance for some more years? James Mackey

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Lori, Volunteer Mentor | @loribmt | May 21, 2022
In reply to @makatak47 "Hello, I was recently diagnosed with a large tumor near my anus, and it has stage..." + (show)
@makatak47

Hello, I was recently diagnosed with a large tumor near my anus, and it has stage 4 cancer. It has spread to some bones and a slight amount to my left lung. Is this a death sentence, or can chemo stop it and, one day lengthen my life. I am a 74 y/o male, so I know this works against me. I met a gentleman at the hospital that said chemo wasn't near as bad as it was a few years ago, and he had been healthy for several years after several rounds of chemo. Do I have a chance for some more years? James Mackey

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James, “It isn’t over until it’s over!” I’ve been on that statistical, Cancer Wheel of Fortune, with bad odds. But here I am 3 years later in full remission. I don’t have your particular cancer but had I not taken the chance with chemo I wouldn’t be here.
At 74 you can have many great years ahead of you. But not if you don’t take the proactive step to get underway with the chemo and treatment for your disease. You will have some miserable days, I can guarantee it. It’s mostly nausea but your team will keep you covered with different nausea meds.

Fatigue will be your companion for a few months as well.
You might have some gut issues but if you can keep a reasonable diet and eat some yogurt daily with at least a teaspoon of ground flax, that seemed to help keep my intestines and stomach happier.
You also might lose your hair and have some mouth sores. The side effects are largely temporary. I was 65 when this all happened, now 68, strong and energetic.

I’m a mentor at my local hospital for other cancer patients and potential bone marrow transplant patients. My latest mentee is 75 years young, just finished his induction and consolidation chemo for AML with flying colors. He’s now heading off for his transplant.
So, with you being at 74 and having the possibility of a healthy future ahead of you with chemo or a limited future without it, personally, I’d keep an eye on the prize and go for the chemo.

Will you also require some surgery or any radiation?

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 21, 2022
In reply to @makatak47 "Hello, I was recently diagnosed with a large tumor near my anus, and it has stage..." + (show)
@makatak47

Hello, I was recently diagnosed with a large tumor near my anus, and it has stage 4 cancer. It has spread to some bones and a slight amount to my left lung. Is this a death sentence, or can chemo stop it and, one day lengthen my life. I am a 74 y/o male, so I know this works against me. I met a gentleman at the hospital that said chemo wasn't near as bad as it was a few years ago, and he had been healthy for several years after several rounds of chemo. Do I have a chance for some more years? James Mackey

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@makatak47 You pose a very personal question. That is, each person has their own story, their own unique journey in a cancer situation. Remember, what works for one may need to be modified to work for someone else. With the right-for-you combination you absolutely have a chance at "some more years". I saw on your profile that your doctor there in the Philippines says the cancer in non-operable. If I was in your shoes, I would hold off accepting that until your case has been reviewed by the Mayo Clinic doctors you are set to see, and listen to their treatment plan ideas.

Now is a good time to write down questions you have, concerns that have come to mind, and carry those along with you to your appointments. Don't be afraid to ask for information to be repeated if you didn't hear/understand it the first time. One of the things that seems to help me, is to ask my care team, "If I was your sister, how would you advise me?" That seems to personalize things; I did that years ago with melanoma, and have done it several times since. You will have the final sayso, always, in any treatment.

How are you feeling today? How can I support you?
Ginger

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rose53 | @rose53 | May 21, 2022
In reply to @makatak47 "Hello, I was recently diagnosed with a large tumor near my anus, and it has stage..." + (show)
@makatak47

Hello, I was recently diagnosed with a large tumor near my anus, and it has stage 4 cancer. It has spread to some bones and a slight amount to my left lung. Is this a death sentence, or can chemo stop it and, one day lengthen my life. I am a 74 y/o male, so I know this works against me. I met a gentleman at the hospital that said chemo wasn't near as bad as it was a few years ago, and he had been healthy for several years after several rounds of chemo. Do I have a chance for some more years? James Mackey

Jump to this post

Dear @makatak47
It's quite understandable that you would be afraid of all the unknown. We all go through the same feelings when diagnosed with the word " cancer". It threatens our very precious life. However, you can fight this. Seek the health team for this particular issue and set up an appointment right away for evaluation. I would call Mayo at selected states you would like to go. I hope you will get the needed care as soon as possible.
Kind regards
#ROSE53

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1 reply
makatak47 | @makatak47 | May 21, 2022
In reply to @rose53 "Dear @makatak47 It's quite understandable that you would be afraid of all the unknown. We all..." + (show)
@rose53

Dear @makatak47
It's quite understandable that you would be afraid of all the unknown. We all go through the same feelings when diagnosed with the word " cancer". It threatens our very precious life. However, you can fight this. Seek the health team for this particular issue and set up an appointment right away for evaluation. I would call Mayo at selected states you would like to go. I hope you will get the needed care as soon as possible.
Kind regards
#ROSE53

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Phoenix would be my 1st choice, my kids live nearby, and coming from the Philippine Islands, San Francisco would be my landing spot. But, from what I read, there is up to a 2 year waiting list. Any suggestions? I could be dead in 2 years. I am a 74y/o male with stage 4 cancer. Thank You for your response.
James Mackey

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3 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | May 21, 2022
In reply to @makatak47 "Phoenix would be my 1st choice, my kids live nearby, and coming from the Philippine Islands,..." + (show)
@makatak47

Phoenix would be my 1st choice, my kids live nearby, and coming from the Philippine Islands, San Francisco would be my landing spot. But, from what I read, there is up to a 2 year waiting list. Any suggestions? I could be dead in 2 years. I am a 74y/o male with stage 4 cancer. Thank You for your response.
James Mackey

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Mayo triages patients and if they think they can help and you need help sooner you might find you get in sooner, this could also be because certain departments have a longer wait time.Also if you are willing to go to a different location of Mayo, they might be able to get you in sooner.
Have you requested an appointment?

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