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.

@hopeful33250

Hello @kathleenkin
Thank you for sharing the picture of Mac. What a sweet looking dog. He must be a comfort for you!

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He is a miniature Min Pin with Pomeranian on the front. He is super protective ❤️💕

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@gingerw

@leannn I am glad you feel comfortable to share with us here on Mayo Connect. The subjects of death and grief are so individualized for people, at least in my experience. Like my dad, I do not hesitate to talk about either one, but several of my siblings are the opposite. This was never so clear as when our parents were at their earthly road's end. I have encouraged my husband to speak of his former long-time partner, who passed before I came into his life. Mementos she gave him are on display in his office, and pictures including her are displayed. Would you be able to explain to your husband how his comment struck you? How do you think he might respond?
Ginger

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@gingerw Your post brought me to tears, Ginger. If my husband remarries, I would hope he'd marry someone that shares your perspective. It's so hard to write that!!! We both have so much emotion tied to the subject of life for him after I die that the few times we've brought it up, it never goes well. We typically can talk about most things, but this has proven to be tough and his response so short and "off the table ", that I'm afraid it's simply not going to be productive for either one of us. In all fairness, this is us. We love each other very much! I have no doubt he is there for me until my last breath! But I am a counselor by trade, who's no stranger to tough topics and feelings galore and he is an appraiser supervisor, who deals with facts, concrete values, math and everything logical. lol All kidding aside, I wish I could explain how the comment crushed me. I tried the next evening because it weighed so heavy on my heart but the results were the same. I don't know if it's a protective mechanism, just can't go there, or if he truly feels that once I'm gone, "that's that" and he grieves and copes by tucking it all inside and moving on. You're so right. Everyone grieves in their own way and time. I just want it to be healthy - find some way to remember, share, talk about me, laugh about the good memories, to not be forgotten, but to make an impact, to make a difference in remembering my love for him.

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@kathleenkin

It may sound strange to some, but my dog brings me comfort. I live alone. My family is nearby but with most families they are busy. Days when I don’t feel well, Mac will lay on my shoulder with his face on my cheek. I know he depends on me and that keeps me motivated

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@kathleenkin Aw, I know how wonderful that is. I'm so glad you have Mac. My dog, Marshall, brings me comfort and companionship too! They have a way that definitely keeps us going.

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@kathleenkin

I just had my fifth cancer surgery on the 6th of December. I gave a very rare cancer called chondrosarcoma. It is a bone cancer that creates cells in my bones and throws the cells in my lung. They removed my right lung two years ago.
I keep a positive attitude. I enjoy every day that I gave. I currently have seven tumors in my left lung. They are small and too deep for surgery right now. I know that in time they will have to be removed and my life will change dramatically. I am mot afraid of death. The hard part will be leaving my son. My son and family know my wishes and we discuss the future. I trust that God has a plan for my life. I pray that you will find peace and joy, and that fear will not be part of your life. Be honest and open with. Your husband about your feelings. He is scared too. I wish you the best. Most of all - don’t give up!!

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Thank you @kathleenkin - I won't give up. I'm wired to fight this battle as it sounds like you are too! I admire your faith and resiliency with the physical effects and the unknown future. It must bring a sense of closure knowing your son and his wife know your wishes so now you can just live the day at hand. I agree, the hardest part is leaving those we love behind. I will try to find another time to talk with my husband. Right now, we're blessed. Although I have several side effects, they dont hamper my everyday living with a few adjustments and I "look" 😉 pretty healthy. Maybe he's just not ready for these conversations. Sometimes, I feel like I'm not either. But I'll continue to be open and honest. Maybe I need to just write it out and save it to get it off my chest. I SO appreciate your prayers for peace and joy without fear. My next CT scans are in Jan. and I know I tend to get a little anxious thinking life could change again on a dime. BUT, we've got today! I never want to trade the possibility of a wonderful day for worries about another!! Thank you so much and best wishes to you as well. We'll keep fighting the good fight!!

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@sundance6

I also live alone! My dogs are my kindered spirts. We are so Lucky to be blessed with them.
Sundance (RB)

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@sundance6 @kathleenkin Since we got on the topic of our puppy dogs, I had to share Marshall! He's ready to see the kids at my elementary school where we work as an animal therapy team with children! I've seen Marshall calm the souls and bring out the smiles in some of the toughest, heartbroken kids. Yes, we are blessed to have them! Merry Christmas. 🙂

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@leannn

@sundance6 @kathleenkin Since we got on the topic of our puppy dogs, I had to share Marshall! He's ready to see the kids at my elementary school where we work as an animal therapy team with children! I've seen Marshall calm the souls and bring out the smiles in some of the toughest, heartbroken kids. Yes, we are blessed to have them! Merry Christmas. 🙂

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Hi @leannn,
It looks like you and Marshall have an important mission in life! Keep up the good work, the children at the school need you both!!

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@hopeful33250

Hi @leannn,
It looks like you and Marshall have an important mission in life! Keep up the good work, the children at the school need you both!!

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@hopeful33250 Thank you! When I retired after 25 years as an elementary counselor, I had to find some way to get back to helping kids. So Marshall, a rescue from a local prison program that keeps dogs/puppies until they're adopted, became ours in 2014 - a day after my last radiation treatment! So I started training him to pass his certifications and now we love giving back, seeing kids.

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Colleen, thanks for serving as moderator! I have an idea to share with you and seek your ideas as well.

At 62, I am living with stage 4 prostate cancer, currently on hormone therapy (Eligard every three months), and am an insulin-dependent diabetic (30 years) with advanced coronary disease (super high CAC), but you'd never know it to look at me and my 40+ hour work schedule! I was treated four years ago with combination therapy, external beam + brachytherapy, but it did not stop the cancer progression. I can handle the side effects of hormone therapy except for one, the increased blood sugar, which is dramatically higher. Because of this, I am actively seeking second opinions from Mayo and MD Anderson regarding alternatives to hormone therapy after chemo ( I had 6 treatments of taxotere, ending on 7/11/19).

In a nutshell, i view prostate cancer like this: metastatic prostate cancer is like a car driving around with living people/cancer cells, driving away from the prostate and dropping off the cancer cells in various locations (bones, liver, kidneys) as it travels around your body on the bloodstream highway. However, for men, the car needs gas, and that gas is testosterone; by cutting off the gas supply, or minimizing its fuel, it cannot travel as far or as fast throughout the body. While the car is the vehicle that carries the cancer cells all over the body, the cancer cells/passengers themselves, per the work of Dr. Thomas Seyfried, Cancer As A Metabolic Disease, cannot survive without glucose/sugar and glutamine in the blood. Dr. Seyfried's simplified theory is to cut off the food supply --- glucose and glutamine --- to the cancer cells, and over time they cannot survive or thrives, regardless of whether or not the car still has fuel/testosterone to carry them around the body. They will simply die off over time without glucose/glutamine. Admittedly, Dr. Seyfried's theory is still under clinical investigation, but it holds great promise for cancer patients.

Here is the dilemma for insulin-dependent diabetics on hormone therapy: while the drug drops testosterone/fuel for the spread of cancer to nearly zero, it dramatically increases blood sugar, the fuel for the cancer cells that are still alive, food for metabolism/replication. What is the potential implication of this? Existing cancer cells will get more than enough fuel to survive and thrive, though spreading more slowly without testosterone. My cancer doctor's advice was this: consult with your endocrinologist and adjust your insulin. I did that, and my insulin requirements increased to an insanely high amount to get my blood sugar even close to normal (80-110).

This is why I am seeking a second opinion from either Mayo or MD Anderson. Your thoughts appreciated as well!

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Since we're sharing pups...here is my Napa (on right) and our daughter's Stella on left from last evening. Both Lab rescues. Definitely bffs (best furry friends) for sure!

On the topic of life/marriage/getting on after the loss of our loved one, I can only relate my personal experience on this.

Before my wife was diagnosed we never discussed the topic of my marrying anyone else. We were married to each other, I coveted no other, and I had no desire to move on then. Similarly when she was ill I viewed our marriage the same way -- I treasured every day we had together and I had no interest or desire to end it prematurely by discussing what I should do about another marriage after my wife died. Nope. I was married and that was all I wanted to concentrate on -- the time we had left. I knew it would end too soon as it was and I viewed any conversation on another marriage as encroaching on the precious time we had left to focus on each other.

Just my view as a guy.

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@leann @kathleenkin Thank you for posting the photos of your lovely dogs. I check into this discussion but have not posted in awhile and I was pleasantly surprised by the photos. Our companion animals are such a blessing. As soon as I sit down, one of the cats is on my lap and if we let the cats into the bedroom at night they would both sleep on or next to us (my partner says no animals in the bedroom).

I worry about recurrence or second cancers. I was diagnosed with endometrial cancer (endometrial adenocarcinoma FIGO Grade 1) in July, 2019) and went to Mayo Clinic in Rochester after I got the diagnosis from my local gynecologist. At Mayo, I had a radical hysterectomy with salpingo-oopherectomy and pathology after surgery showed that the adenocarcinoma was 1a with minimal invasion in the myometrium and no spread. So, I'm a cancer survivor. I'm due for my first 6 month follow-up in February, 2020 and I'll return to Mayo in Rochester for that appointment and all of my follow-up care.

I'm trying to think why I'm writing this now. Maybe it's the worry in the back of my mind that never completely leaves although is often suppressed in my day-to-day life. What else can I or any of us do but live with our lives that we share with our humans and companion animals? And some of us, like Marshall, get to share our gifts as therapy animals! And notice our blessings everyday.

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