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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.

vsinn2000 | @vsinn2000 | Apr 13, 2018
In reply to @nogginquest "Tomorrow I go in for radiosurgery on my pancreas. When I was first diagnosed with stage..." + (show)
@nogginquest

Tomorrow I go in for radiosurgery on my pancreas.
When I was first diagnosed with stage IV pancreatic cancer, I was told that I was not a candidate for surgery or radiation. However, the cancer responded to Folfirinox/Folfiri treatments. The nearly two dozen tumors in my liver are resolved, and the 2inch tumor in my pancreas is a fuzzy haze on the scans. I'm slowly buying back time.

We are going in to zap the original source of the cancer and hopefully kill of a few more cancer cells.

My oncology teams said we are in uncharted territory, and there is a 2% chance the procedure could be fatal. There is also a chance that we could damage my small intestine. However, the benefits far outweigh the risks. We are trying to stay on top of the cancer.

I am 45, and I am fighting for my life. I'm both nervous and excited about this procedure. I'm also nervous about skipping chemo for a month. What if the cancer starts to grow somewhere else while we zap the pancreas?

Here's going into the big unknown.

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Your whole battle is like flying off into new, uncharted territory! Keep fighting, every single day. Mayo works miracles and if there is even a small chance to beat this I guarantee you they will have your back and do everything humanly, technologically and spiritually possible to help you! Stay positive and my thoughts are with you!

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margaretrivers | @margaretrivers | Apr 15, 2018

I was diagnosed with pancreatic cancer 9/12/2016 Stage 3. I was told I'm not a candidate for surgury. Dr been giving me chemo and until now the tumor was stable. Now the last abd cat scan shows there's a 'mild progression of the tumor at the head of the pancreasl Drs want me to have radiation ; and and I'm scheduled for a PET SCAN in the morning. How effective is radiation..and I was told I MUST keep my blood sugar UNDER 150 IN ORDER TO HAVE THE pet scan. My blood sugars have always been erratiC; wILL they NOT DO THE TEST IF MY BS ISN'T BELOW 150 which means I can't do the radiation?

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1 reply
Maureen, Alumna Mentor | @alpaca | Apr 15, 2018

I don't know the answer, just know that PET scans show uptake of glucose where tumours are active. You wouldn't want anything to give you a false result. Were you told how to manage your diet to achieve this? Good luck with the scan and the radiation. Once again, I don't know about radiation for pancreatic cancer but see radiation as an important tool for managing cancer. Best wishes.

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ginpene | @ginpene05 | Apr 15, 2018
In reply to @margaretrivers "I was diagnosed with pancreatic cancer 9/12/2016 Stage 3. I was told I'm not a candidate..." + (show)
@margaretrivers

I was diagnosed with pancreatic cancer 9/12/2016 Stage 3. I was told I'm not a candidate for surgury. Dr been giving me chemo and until now the tumor was stable. Now the last abd cat scan shows there's a 'mild progression of the tumor at the head of the pancreasl Drs want me to have radiation ; and and I'm scheduled for a PET SCAN in the morning. How effective is radiation..and I was told I MUST keep my blood sugar UNDER 150 IN ORDER TO HAVE THE pet scan. My blood sugars have always been erratiC; wILL they NOT DO THE TEST IF MY BS ISN'T BELOW 150 which means I can't do the radiation?

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Hi, sorry about your recent changes in your tumor. I have had 2 PET scans, and they said nothing by mouth from midnight the night before, and my blood sugars were below 100 by the morning of the scan. If your levels are erratic, they should schedule you first thing in the morning. Ask your doc, but I would think your levels would be alright. And the PET is so important for diagnosis. Good luck and keep fighting. gp

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margaretrivers | @margaretrivers | Apr 15, 2018

No, I wasn't told how to manage diet to achieve lower bs except what I've been doing already; diabetic diet. but most foods taste bad to me.I've lost so much weight, dr, said eat whatrever I can

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2 replies
ginpene | @ginpene05 | Apr 15, 2018

Oh, Honey, I'm sad you don't eat. When I was on the chemo everything tasted like metal. But good luck with the PET scan. I'll be thinking of you. gp

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Maureen, Alumna Mentor | @alpaca | Apr 15, 2018
In reply to @margaretrivers "No, I wasn't told how to manage diet to achieve lower bs except what I've been..." + (show)
@margaretrivers

No, I wasn't told how to manage diet to achieve lower bs except what I've been doing already; diabetic diet. but most foods taste bad to me.I've lost so much weight, dr, said eat whatrever I can

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That makes it harder. There was some good advice up thread a bit. I really hope you get your PET scan and radiation. Sounds as if you need more info about the PET scan.

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saltis | @saltis | Apr 16, 2018

Hello @margaretrivers, Wish you luck with everything. Hope you can do your PET-Scan today and everything goes just fine. Radiation was very effective, in two of my cancers. My body is a cancer-loving one so it is always looking for more challenges to keep on this adventure going on. Just keep calm & positive about this stage of your life. Remember the good in your life, the last laughters ”real ones” and enjoy them again. Love yourself and try to find positive aspects in every ”happening”. Even in the worse hour, if you look around there are so many beautiful things to enjoy. I do this when I feel deep down in the shit hole, sorry for the language, but I have been fighting cancer for the last 23 years and for the past 3 years I have been diagnosen with spread cancer stage 4. When I am in the deepest I look around me and a bird singing, a child’s laughter or a smile makes me feel alive. Have a nice day and good luck.

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Linda | @llwortman | Apr 16, 2018
In reply to @allisonsnow "I got up to pea and saw all the lights left on! and since I am..." + (show)
@allisonsnow

I got up to pea and saw all the lights left on! and since I am wide awake thought I would sign in. Just read the opening comment for the first time I believe. now I have tears slowly trailing down my face, friends really do not get it. and I don't think they want to. Who would? Why would you go on this emotional rollercoaster if you didn't have to? That can make for a lonely place and that is what is getting me down tonight/today. I get selfish and just because I need someone to talk to that "gets it" I expect them to be there. I am sure I have made this comment before ...but if one more person says "well everyone is going to die" "I could get hit by a bus tomorrow" ( and why always a bus?)????? It belittles our feelings as though dying of cancer is nothing special...they have to face dying also...so NOT THE SAME as we all know...it is special and takes a special person, someone brave, caring, loving and strong. Some days just wish I wasn't "so special" well back to bed and not sleeping. Have a good night and better morning to all.

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Dear Allison:
I am watching and thinking of you as a 10 year lung cancer survivor.
I encourage you to check out Mayo Clinic Dr Amit Sood, on line and read his Mindfulness and Resiliency articles or books and if you can listen to his powerful words of meditation.
I have learned the power of learning how to relax my mind, body, spirit and nervous system through his program and It has been remarkable as I have strived to beat the 17% chance of living after lung cancer diagnosis and surgery.

I live with this paced breathing program that is now on on my phone and it helps calm me accept life as I must live it
one moment and one day st a time.
You are in thoughts and prayers.
I am sending you kind cyber hugs.
lung cancer mentor
linda

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