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.

leftybarb | @leftybarb | Aug 16 9:09pm

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

I recently had my CT scan July -16 and my cancer doctor said it’s great that everything looked good but soon after having the scan my CA125 was high it was 38 now it keeps going up every time it’s checked. I was told to focus on my scan that was good and keep getting CT Sans every few months is routinely done. So I haven’t got a straight answer yet for anyone as to why it’s going up every time and it’s so concerning for me I wish they’d just tell me why or if it’s normal you know? And I only get Ct scans idk why i don’t get any other kind of test or scans ?idk know what a sigtura test is or pet ? I really hope you’ve figured it out with your doctor ik it’s frustrating

Lisa, Volunteer Mentor | @lls8000 | Aug 16 2:23pm

In reply to @robynwithay "Yes, it's been confirmed that it's spreading. Luckily, its still only in the bones and not..." + (show)

@robynwithay, I hope your new treatment goes well, with minimal side effects and maximum effectiveness. I'm still doing well, and while it's taken some time, I've come to accept that there are just some things that we can't control or predict. There are new treatments or combinations of treatments coming along all the time. Any statistics that you see are lagging behind today's science. I know it's not going to be easy. Know that someone is the exception in all of the studies and outperforms expectations. You could be that exception. Is your family/support system aware of your diagnosis? Or is there someone that can help as needed? Sending big hugs.

robynwithay | @robynwithay | Aug 12 8:39pm

In reply to @lls8000 "@robynwithay, I don't have metastatic breast cancer, but I have had metastatic lung cancer for the..." + (show)

Yes, it's been confirmed that it's spreading. Luckily, its still only in the bones and not a 3rd site so I am starting a new treatment tomorrow. I understand it's a bit harsher than the Ibrance I've been taking. I was really hoping to stay on Ibrance longer but I guess it's just not in the cards. I'll my research makes me just hope that I can still maintain what I do in my life for maybe another year. Could be wishful thinking, but I guess we have to do that, right? Good to hear that you've been metastatic for 5 years and still doing well. Or maybe you didn't say that. Are you still doing well?

4fs | @4fs | Aug 10 11:21am

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

My husband has stage 4 colon cancer, colon is clear now but a couple of spots in his liver ,he had Y90 placed directly into his liver . That shrunk them down but of course they wanted to grow again he is now on Fruquintinid for 21 days and off for 7 , it’s working which is great as we found out he’s actually allergic to chemo
I believe there are several “ targeted therapies “ available for you.
Good luck

bryan18603 | @bryan18603 | Aug 6 6:41am

In reply to @rschreib "Thanks for your comment. My oncologist doesn't think that the 5FU is doing much at this..." + (show)

Thank You

rschreib | @rschreib | Aug 4 11:09pm

In reply to @bryan18603 "I was also diagnosed in February 2024 with GEJ stage 4 with a lymph node in..." + (show)

Thanks for your comment. My oncologist doesn't think that the 5FU is doing much at this point.

rschreib | @rschreib | Aug 4 11:07pm

In reply to @triciaot "@rschreib You might want to check out the pancreatic cancer group. Many have taken FOLFOX, some..." + (show)

Thanks!

bryan18603 | @bryan18603 | Aug 4 7:10am

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

I was also diagnosed in February 2024 with GEJ stage 4 with a lymph node in my neck positive.
Have been on 5 FU and immunotherapy for 28 cycles. Have had clear scans for quite awhile but my doctor has not said anything about getting off the 5 FU. I would be interested in the reason why your doctor is recommending stopping 5FU.

nparadisum | @nparadisum | Aug 2 11:06am

At 83, I've been dealing
with prostate cancer for ten years, and currently am on doublet therapy (Lupron and Erleada). Rather than dwell on what's to come, I spend a good part of my time planning trips abroad with my wife, working in our yard, and trying to get all of our estate and finances in order so my wife and/or other family members won't have to. The last is a challenge as the Mrs has a hard time sorting through and organizing all of the stuff we've accumulated in 53 years of marriage! At least all of this, good and frustrating, keeps me from dwelling on the cancer, so I'm grateful for that,

proftom2 | @proftom2 | Aug 2 8:57am

Love the Title of this article. Why? It's' so true. I've been on this advance cancer journey for 4.8 years and I continually have to remind myself "I am not who I use to be." My bodily systems are different, they are very busy fighting cancer. My mind often needs to be reminded I am not the old "Tom" anymore, I am the new old Tom trying to be a better old Tom.

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