Talking Frankly about Living with Advanced Cancer

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.

@rfmb

Thanks for the invite. How many here have survivors guilt? I am a five year survivor and have struggled with survivors guilty for almost my entire survivorship. My mother-in-law was diagnosed with breast cancer approximately a month after I was. She knew she had it and hid it from us. She died 3 months after diagnosis. My eldest brother died suddenly of exanguination due to undiagnosed Lymphoma that burst an artery in his lungs approximately 17 months after my diagnosis. My mother whom I was living with and caring for at the time because she had end stage COPD gave up living after my brothers death. She had already buried two husbands and now her eldest son and I had stage 4 ovarian cancer. I feel she was determined to go before me or my other brother who has a possible life threatening illness. My sister-in-law who came with my surviving brother for Mom's Memorial Service while visiting became ill. She went home and never got better. Six weeks later she was diagnosed with Glioblastoma and died nine months later. I have such tremendous guilt everytime I hear of another person dying of cancer because I for some reason have been allowed to live and be with my amazing daughter and four beautiful grandchildren. I know in my heart that all who have gone before me are in a better place but I cannot help wonder why I am still here. At times I miss them all so much that I want to be with them.

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I feel sad if you let this be a source of angst and stress. I practice Buddhism, so I may think of God differently than some reading this, but there is a great saying, "God's not finished with me yet." You have a mission and a purpose, unique to you. It seems likely that you have not completed it yet. Maybe it's one thing you will tell one of your grandchildren one of these days. You needn't think of it as something grand or great, but maybe it will have a ripple effect of causing great good in the world or in one precious persons life. I'm sure you are deeply grieving the loss of all these family members, and here in the midst of your own precarious situation, that can't be easy. I hope this helps in some way.

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I have peace and do not approach this with fear. I don't have too many regrets and I have a wonderful husband. I am just starting this journey again for the second time, but I refuse to get on a merry-go-round of emotions because I feel that this is out of my hands and "yea, though I walk through the valley of death, I shall fear no evil" - Thank you God for every beautiful day, for my geese, and foxes and tadpoles and ducks! For a wonderful husband and son. I am truly blessed! Gina

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@earscan

I have peace and do not approach this with fear. I don't have too many regrets and I have a wonderful husband. I am just starting this journey again for the second time, but I refuse to get on a merry-go-round of emotions because I feel that this is out of my hands and "yea, though I walk through the valley of death, I shall fear no evil" - Thank you God for every beautiful day, for my geese, and foxes and tadpoles and ducks! For a wonderful husband and son. I am truly blessed! Gina

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Hi @earscan and @rfmb, and welcome to Mayo Clinic Connect.

@rfmb, I think survivor's guilt isn't uncommon, especially in a situation like yours where you know so many who had cancer. @apl2014 started a discussion dedicated to this very topic.

- Cancer Survivor Guilt https://connect.mayoclinic.org/discussion/survivor-guilt/

Gina (@earscan), your geese, foxes, ducks and tadpoles sound idyllic. You must live in the country or have a pond with wonderful views. You said the you're starting this journey for the second time. Has the original cancer returned/metastacized or have you been diagnosed with a second cancer type?

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Thank you Colleen. You are my first "reply" and it makes me feel not alone. No, the original cancer in the anus was cured but the squamous cell carcinoma has come back in my uterus with a malignant neoplasm of the endometrium. I am at peace, but some days are good and some are bad. Today not so good. But the greatest relief is that I don't have to worry about my healthcare! Knowing that you are with the best means one can relax and let the professionals do their job. For this, I thank God every day that I was referred to and accepted by the Mayo Clinic. It is uplifting just to walk in there and speak with employees who are so proud they are working at the Mayo Clinic. You are my new family!

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@hopeful33250

I'm glad that you posted this discussion, Colleen. As I've had three surgeries for neuroendocrine tumors, a rare form of cancer, I've found myself wanting to look positively at the future, but with a cautious-eye on the reality of three occurrences. While I keep active, and I volunteer, work and maintain friendships, the reality of cancer is always there. I find myself still searching for answers and still trying to live a normal life. It really is a different reality from my life prior to cancer.

I would love to hear from others who are living with this dilemma. How are you balancing the different feelings of optimism and the reality of a cancer diagnosis?

Teresa

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Hi Teresa - I try to balance things by having peace. I know I am with the best team; I am seeking out support groups, and I spend a lot of time sitting out back, watching the foxes, tadpoles, geese and enjoy my deaf dog, blind cat and mini Yorkie who thinks she's in charge of the world. I keep it simple and have goal oriented projects and my husband and I have our daily wine break at 3 pm. I have met with my minister, who has helped to give me peace also. I only hope my peace will withstand storms that are coming, but I feel good about it. Love to you sweetie! Gina

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@rfmb

Thanks for the invite. How many here have survivors guilt? I am a five year survivor and have struggled with survivors guilty for almost my entire survivorship. My mother-in-law was diagnosed with breast cancer approximately a month after I was. She knew she had it and hid it from us. She died 3 months after diagnosis. My eldest brother died suddenly of exanguination due to undiagnosed Lymphoma that burst an artery in his lungs approximately 17 months after my diagnosis. My mother whom I was living with and caring for at the time because she had end stage COPD gave up living after my brothers death. She had already buried two husbands and now her eldest son and I had stage 4 ovarian cancer. I feel she was determined to go before me or my other brother who has a possible life threatening illness. My sister-in-law who came with my surviving brother for Mom's Memorial Service while visiting became ill. She went home and never got better. Six weeks later she was diagnosed with Glioblastoma and died nine months later. I have such tremendous guilt everytime I hear of another person dying of cancer because I for some reason have been allowed to live and be with my amazing daughter and four beautiful grandchildren. I know in my heart that all who have gone before me are in a better place but I cannot help wonder why I am still here. At times I miss them all so much that I want to be with them.

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@rfmb- I'd also like to welcome you to Mayo Clinic Connect. I am a 23-year lung cancer survivor with stage 4 lung cancer. Instead of metastasis all of my lesions are considered very slow-growing primaries. I did feel guilt before I had chemo in 2008. Since then I haven't. My survival and my cancers are special to me. Another person could have the same cancer history but have a completely different outcome. I had a sister-in-law who also did nothing about her uterine cancer and died as a result of that.

In the past couple of years, I have lost 2 cousins, both male, who I grew up with. This was extremely difficult because as a combined trio we had our family's history from 2 sides of the family, plus our own. When they died I felt horrible and felt as if parts of me died with them. But not guilt. And the reason I think that I didn't feel guilty was that there was nothing I could do to keep them alive.

Survivor's guilt is a reaction to surviving a traumatic event that others have died in. Survivors feel guilty that they have survived a huge trauma and others – such as their family, friends, and colleagues – did not. But perhaps guilt can be used as a reminder that we are still here and to honor our family and friends by living life by going ahead and being the best that we can with it.

Who is to know why some people die and others live? I feel so lucky that I have survived for so long. I don't know why but I am surely thankful. By surviving I also found Connect and was able to get out of myself and help others with my support and experience.

Right now it doesn't matter why you are still here. There are just worldly things that can't be answered. Can you look at your survival as a gift and make the most of it?

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I just got ct scan of maas on pancreas. Now starts the testing, imaging, who knows what else. Am somewhat in shock at this. Family will give me support. Am preparing for the trials ahead.

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@aaternes

I just got ct scan of maas on pancreas. Now starts the testing, imaging, who knows what else. Am somewhat in shock at this. Family will give me support. Am preparing for the trials ahead.

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Hi Aaternes, sorry that I didn't see your message earlier. I noticed that you posted in the discussion about advanced cancer. But it sounds like you are still in the discovery phase and learning about the type and stage of your particular cancer.

There will be a lot to learn, schedules and tests. I think you might wish to follow pancreatic cancer group and connect with members in that group where you can share your concerns, ask questions and hear from others who have walked this journey before you. Here's the link to the group:
- Pancreatic Cancer group https://connect.mayoclinic.org/group/pancreatic-cancer/

What will be the next test and when?

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@colleenyoung

Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's not easy to find a place where you can have a frank discussion with other people living with advanced cancer. I invite you to do that here.

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I need and appreciate having this support site.

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@miller03

I need and appreciate having this support site.

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Hi Miller03, and welcome. I see from your profile that you are living with a very rare gynecological cancer, mesonephric adenocarcinoma (MNA) that has metastasized to your liver and lungs. Were you diagnosed with lymphoma and MNA at the same time or the MNA a recent diagnosis?

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