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.

Rubyslippers | @triciaot | Aug 1 7:53pm

In reply to @rschreib "I was diagnosed with gastroesophageal junction cancer adenocarcinoma stage IV with two liver mets in early..." + (show)

@rschreib You might want to check out the pancreatic cancer group. Many have taken FOLFOX, some have adenocarcinoma, and they may have experience with drugs that will also address gastroesophageal.
Best wishes to you!

rschreib | @rschreib | Aug 1 11:36am

I was diagnosed with gastroesophageal junction cancer adenocarcinoma stage IV with two liver mets in early February 2024. I had no previous symptoms, so this was quite a shock! (I was 57 years old at the time and very healthy.) Based on my initial tumor testing for PD-L1 I was put on Nivo in addition to FOLFOX for eight rounds. Since that time I have been on 5 F-U and Nivo for 36 rounds total. I'm considering going off 5-FU, which has been recommended by my oncologist, but I am nervous about it as one of my liver mets grew back a year ago. (I had SBRT in Sept. 2024, and my scans have been clear since Dec. 2024.) I would love to hear from anyone who is on immunotherapy (not chemotherapy) about your experience. Thank you!

Lisa, Volunteer Mentor | @lls8000 | Jul 31 6:02pm

In reply to @robynwithay "Hello, I'm also new to the group. Been Stage 4 for 2 1/2 years. I Tumor..." + (show)

@robynwithay, I don't have metastatic breast cancer, but I have had metastatic lung cancer for the past 5 years, and breast cancer stage 1B within this past year. I did really struggle with the metastatic diagnosis for the first few years. I was in a fog and just kept living my life as I had prior to cancer. It's a difficult diagnosis to process, and asking for help from your oncology office (social worker or therapist who is good at working with cancer patients) may help to restore some joy and purpose to your own life. Having an adult son that needs you for his care adds an additional weight to your shoulders. You have a lot to process and work through. I hope you are able to find some help. You shouldn't have to do this on your own.
Have you learned anything more from the recent PET scan?

robynwithay | @robynwithay | Jul 21 8:33pm

In reply to @clayesq "hello, all... New to the group. I have been living with melanoma since 2014, and last..." + (show)

Hello, I'm also new to the group. Been Stage 4 for 2 1/2 years. I Tumor Marker went way up so getting scans tomorrow. Hoping it's some kind of fluke like I read all the time but always waiting for the boot to drop, if you know what I mean. Trying to stay positive, so hello to you and have a great remainder of your week.

robynwithay | @robynwithay | Jul 21 8:27pm

In reply to @testlady "Six years and counting! I walk around with a smile and a positive attitude only to..." + (show)

8 years with Breast cancer and 2 1/2 with MBC. My Tumor marker suddenly went way up and going for a PT Scan tomorrow to see why. But I feel the same way as you. I stay positive for everyone (my 27 yr old son is very disabled and worried about losing me) but always feel like I'm no longer living, just existing for others. I never look at things as if I have a future. I don't think a therapist or psychologist can help me cause I still do what is expected of me every day so what's to fix. Good Luck finding your way and thanks for posting.

jeshaw6801 | @jeshaw6801 | Jun 25 11:47am

In reply to @gingerw "@bradthompson88 Thank you for sharing. Many of us reading your words, whether or not we are..." + (show)

I am now in my 3 rd cycle of chemo for leiomyosarcoma. I went from stage two in Nov 24 to aggressive stage four in March 2025. Wow! That was quick but the CT scans were so vague in December it was not found sooner.

How is it to be stage four? Difficult at times when my chemo fatigue rules, other times I am quite normal except for being a house hermit. I miss my friends even tho I get cards and food gifts. I miss my activities like golf ( which I am too fatigued or it too hot outside) and my bunko girls, and choir and church. And they miss me. My social life consist of dr appts, massage, pt, . My spouse is depressed cause he can't plan our next big adventure. My kids are cautious. I can only see the grands when their noses aren't running ( which is most of the time)

So what do you do until the next scan: research next steps such as perpetual chemo therapy for stable lesions; or liver ablation or liver resection for greatly reduced lesions. When do you do this, why do this, what's the answer??
As you can see living with advanced cancer is full of questions, most which can't be answered until the next scan.
Sometimes when gardening I have the most peace because my mission at that point is to not understand my cancer but rather to obliterate that next weed, and to trim the roses for the next bloom, and plant the next flat of flowers that I overbought at the market. It's about the only time I don't think of my short future or how to prolong it. It is my solace.

Everyone says I'm doing great. But am I?. I never really know. But like gardening I focus on the next task like it is a weed. I try to plant love with my family. I try to care for my caregivers with love. Thanks for letting me share.

marienewland | @mnewland99 | Jun 25 10:31am

In reply to @sistermarcy "Has any one had conflicting diagnostics? I had PET/CT and Singtura, both cancer free. Yet my..." + (show)

Yes, scans can be behind the cancer antigen; 125 in your case. Nodules and lesions have to be large enough to see. In my type of cancer (pancreatic) smaller nodules or lesions can be seen with endoscopy.

sistermarcy | @sistermarcy | Jun 25 8:57am

Has any one had conflicting diagnostics? I had PET/CT and Singtura, both cancer free. Yet my CA125 is rising. My oncologist prescribes a CT with contrast to see any tiny cells. She says it’s unusual to have this type of test discrepancy…anybody have similar experiences? In the mean time I’m focusing on the two “no cancer” tests.😊

sistermarcy | @sistermarcy | Jun 25 8:52am

In reply to @gingerw "@bradthompson88 Thank you for sharing. Many of us reading your words, whether or not we are..." + (show)

I love your reflections, Ginger. You speak for me and I’m sure many others. THANK YOU❤️

Ginger, Volunteer Mentor | @gingerw | Jun 24 12:20pm

In reply to @bradthompson88 "I am recently diagnosed with stage 4 pancreatic adenocarcinoma that has metastasized to my liver and..." + (show)

@bradthompson88

I am recently diagnosed with stage 4 pancreatic adenocarcinoma that has metastasized to my liver and other places.

I’m reading lots about this disease and haven’t even started chemo yet.

But, since I’m in palliative care, my thoughts alternate between many years of remission to short term fatal illness. I feel compelled to get my affairs in order but I don’t dwell on an early death often.

I share everything with my wife of 33 years but I do worry that as she becomes my caregiver, I may overburden her with my feelings.

Maybe I will be able to teach this fall? Maybe not. How much will I be able to do with chemo? Will I end up going to ER with complications? How do we continue with one income? I am a band and Career and TEch Ed. Teacher and I LOVE teaching. It is more than my job, it is part of who I am. I believe in relationships so I work hard on building them with my peers and my students. Our school is k-12 of 180 kids so summer small…hence wearing 2 hats.

Not being able to teach means there will be no band or CTE classes as the teacher shortage is much worse than the media portrays. I already feel the guilt of things I may not be able to do; Someday, hold a grandchild, give advice to my grown sons like my dad did for me. Take my boys fishing…

Dealing with the guilt of letting all my students down(though completely irrational I know) is something I think about.

Losing weight and becoming weaker…how my kids will see me. How my wife will eventually have to bury me. How we won’t be able to grow old together.

Everything is still so new and raw. I like to think I am at peace for me, but how it will affect everyone else is what hurts.

I am 55 and in very good health and am going to try to do some clinical trials along with my chemo. We live 380 miles from Mayo in Rochester so that is where I will go except for regular chemo.

I don’t know if I should look to a therapist (I used one several years ago when bad bosses pushed me over the edge) to talk to because no one around me in my small town of 700 has this disease or anything like it.

My family and my wife’s family have been wonderful, but I dont want to be that person that has to always talk about the cancer. I want normal stuff when we visit.

Anyway, I go back tomorrow for a 2nd attempt at liver biopsy. Ct guided this time as tumors are so small. Then the port gets put in. Once that is in I feel like if I have denial, it will go away.

The crazy part is I feel completely fine. They found the cancer because I got pancreatitis. There weren’t even looking for it. I thought it was a complete gift to catch it early…only to find it had moved to my liver and lymph nodes and possibly in my thyroid as well. So much hopes going up then pushed way down. It’s a roller coaster and I hate roller coasters.

My wife and I are planners and this has shattered our ability to make plans.

Did I mention that we gutted our kitchen a week before the cancer diagnosis? I was going to do some of the work to save $$. Thankfully, small town contractor whose kid I teach will add that to what he was already going to do.

They are working really hard to get things put together before I start chemo so I have a place to crash(we are living in our basement now.)

As I reread this I can see how jumpy my thoughts are. I do type them out in a google doc for my benefit and so my wife can read them someday. Thanks for letting me get this off my chest. It makes me feel a bit better talking with people that will get it.

Jump to this post

@bradthompson88 Thank you for sharing. Many of us reading your words, whether or not we are experiencing advanced cancer, can relate. As for "jumping all over the place", your mind led you to write as you wrote, so it is in the order you needed. When I write, I rarely if ever edit anything; it just is as my mind placed it.

For myself, I often wonder about the legacy my life may leave behind. Having an incurable blood cancer that cannot be addressed by the more common method of stem cell transplant due to my kidney disease that is separate from that blood cancer, I am stuck for Life in the limbo of daily dialysis. Not a kidney transplant candidate due to the blood cancer. A never-ending circle. And at this time I have a "hard no" when it comes to switching to hemodialysis over my peritoneal dialysis if there was to be complications.

So, each day I am grateful for my feet hitting the floor. Even if I cannot feel the floor with my left foot due to neuropathy! And each day I attempt to be a role model of what one can do with limited energy or limiting health concerns. No, I won't do the dunk tank at our little town's 4th of July celebration, but I can sell tickets for it! I can't march in the parade but I can drive my friend's 1947 Mercury for him.

Am I scared? Sometimes. But I want to think that over the decades, I have helped make a difference.
Ginger

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