Talking Frankly about Living with Advanced Cancer

Living with cancer is definitely different than before. In October we discovered a melanoma on my back and that my prostate cancer was back and had metastasized to 4 other areas of the bone. I am 70 and had thought that I was in control of my life, as much as you can be, including a successful business career. We still own one business that we have had for 35 years and I am the president. I only say this because I never realized what the mental trauma could be when you realize this can kill you? I was definitely no longer the one in control of my body! I was lucky that when they removed the melanoma and also lymph nodes from my arm pit and the margins came back clean so at least for now we don't have that hanging over us. I have always been an optimist, so keep that in mind but I do realize all of us have a death sentence. We don't get out of this alive. That was an important concept for me to come to grips with. What is really important, if you can, remember that you are still alive and how you live the rest of your life is up to you. Live for the people who love you. I have a great wife of 45 years, a son and his family, my daughter and so many more who I love dearly. I plan on doing everything I can to make the rest of my life what I want it to be. Medicine is always advancing and new treatments may be out there. I could beat cancer or I could die from it down the road or in an accident this morning riding my bike for exercise. We just never know. So fight with the tools you have, make sure, if you can, that you do your best to live the best life you can based on what is important to you. I of course know every day that I have this cancer and it sucks but I am fighting it every day as well. If your doctor doesn't have more ideas don't be afraid to reach out to another clinic or doctor. The Mayo Clinic seems to be a really good option. As a final thought I had a customer years ago who was in his 80's and he had beat eight different forms or recurrences of cancer. He was a true role model of how to live your life.

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

@sundance6 Oh that's a great idea. Please do. I have to admit, I'm new at this (new thread, etc.) so I'd be happy for you to take the lead. lol

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!

I will continue to pray for you that you can enjoy each minute of every day

@leannn @IndianaScott @kathleenkin @hannahkeels @naturegirl5
I want to thank all who posted in this thread since @leannn's original post. You have given me much to think about. I have dealt with a rollercoaster of issues including an ultra-rare kidney disorder with no treatment nor cure. In October this year I was diagnosed with smoldering multiple myeloma. Now I face the quarterly testing of waiting-for-the-other-shoe-to-drop to see if the MM will morph into active status. But you have shown me the positivity of living each day for now. Thank you.
Ginger

Dear naturegirl5, I wrote to you when you first joined the group. I'm glad to see that you are doing well. Like you, I don't post very often. However, I noticed your comment about your worries regarding a recurrence or secondary cancer. I would imagine all of us share those concerns, perhaps for a lifetime. Although I would say, as time goes on it does seem less burdensome emotionally on a daily basis. Most of us experience anxiety prior to an appointment. I had one in October and my blood pressure was sky high when normally it is quite low (they have me monitor it at home). I'm always completely elated when it is all over and my husband and I celebrate. Then I turn my attention to my life, my loved ones, and dear friends (I don't have a pet as I travel too much, but I had dogs for years). I'm certain your appointment will go well in February, but I truly understand your feelings. Be well.

@leannn @IndianaScott @kathleenkin @hannahkeels @naturegirl5
I want to thank all who posted in this thread since @leannn's original post. You have given me much to think about. I have dealt with a rollercoaster of issues including an ultra-rare kidney disorder with no treatment nor cure. In October this year I was diagnosed with smoldering multiple myeloma. Now I face the quarterly testing of waiting-for-the-other-shoe-to-drop to see if the MM will morph into active status. But you have shown me the positivity of living each day for now. Thank you.
Ginger