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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.

cookercooker | @cookercooker | May 31 1:32pm
In reply to @ankona "about a year ago I had a baseball size meningioma removed from my brain. Unfortunately, it..." + (show)
@ankona

about a year ago I had a baseball size meningioma removed from my brain. Unfortunately, it turned out to be Grade 3 malignant, which is very rare. Now I'm on every 4 months MRI to watch for recurrence. I just had MRI and am waiting to see results next week. I'm considering what I will do if there is regrowth. The original tumor was found when my husband forced me to go to the ER, where they discovered it on an MRI. The NS said it needed to come out right away, and it did, 4 days later. Then 6 weeks of daily radiation treatment. So my husband is very proud of having "saved my life". The problem is, I haven't done or experienced anything in the last year that I would have missed if I had died. I have no children or other family except my husband, who is toxic to be around all day. I don't like my life the way it is, and if this MRI isn't good, I may decide to refuse more surgery and let it take its course. My tumor is so rare that there is no information on survival rates, how long that takes, and what that time would look like. I guess I need to find a counselor I could talk to

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It breaks my heart to hear you're so unhappy that you'd rather not consider your options other than refusing surgery and further treatment. There are no guarantees in life--I didn't think I'd end up with stage 3 extremely aggressive, serous endometrial cancer. But there you have it. And I at one point thought "What's the point of going through all this pain and nausea and numb fingers and and toes, if it's going to get me in the end anyway?" My life isn't great: I don't have a particularly good relationship with my spouse either, and most times I don't feel like going home after being out with friends. Neither do I have children or anyone else significant in my life. But, I still hope that the treatment will work, even if it's a just a little bit to make my days a little easier. In fact, the treatment I'm on now (I had previous chemo treatments that didn't work) has shrunk my tumors, yet minimally to my lymph nodes. I have decided to take more control over the direction my own life once I receive the results of my next CT scan. This will mean addressing my home-life situation, work, travel, and whatever else I need to do to live the life I want, for how ever long that may be. I regret not having this conversation with myself while I was healthy.
You too can get out of your situation, if you take control and look to the future rather than at your present circumstance.

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birdman518 | @birdman518 | May 30 10:06am

Of all the hard things I've had to do since learning of Mitchell's inconceivable but unavoidable death, telling all of you was one of the hardest. I'm still crying. I wish you peace in your journey as you make your decisions.
I will tell you that I "feel" Mitchell with me, encouraging me. Whether anyone believes it or not, the night after he died, he came to me as clear as anything and said, "I built this for you; don't you give up". He meant our life that we built together, and to not give up living because it is a gift that must not be wasted.
Peace be with you,
Lauren

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1 reply
lauramae3 | @lauramae3 | May 30 9:37am

With tears in my eyes from reading your experience I sincerely hope your future holds beautiful things for you. You certainly deserve it.

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ankona | @ankona | May 30 8:34am
In reply to @birdman518 "My heart goes out to each and every one of you, and to your loved ones...." + (show)
@birdman518

My heart goes out to each and every one of you, and to your loved ones.

My beautiful loved one, known here as "Birdman518", passed away from a very rare form of metastasized melanoma to his very gifted brain, on Oct. 9, 2024, I do not have words to describe the depth of my sorrow. He was 68 years young.

My Birdie's first symptom that anything might be "wrong" was on Aug. 18, 2024 when he noticed a slight drool from one side of his mouth, as if he had had Novocain. We went immediately to our local ER, thinking maybe he had Bells Palsy. A CT scan revealed 6 tumors in his brain. The droop was, in fact, a stroke, from which, incredibly, he recovered and had no others (anti-seizure med and steroids).

I took him to Moffitt Cancer Center in Tampa where he was immediately admitted to ICU for more scans. After 4 days of this, Birdie asked for the truth, if ANYTHING they were proposing (MRI of the brain, mapping of the tumors, radiation of the tumors, brain surgery) was going to make his life better than it was "right now". One very honest doctor admitted that it would not, and that his type of melanoma was so rare they had no immunotherapy to try against it, although they were willing to "guess" and try "something".

He asked if anything they were proposing to do for his brain was going to address the tumor that was found in his liver. The answer was, "Not now".

He asked, "How long?" and was told by the very honest doctor, "You are unlikely to be with us in a month".

My Birdie told them that he was going home, where I cared for him with the help of hospice until he passed away 5 weeks later.

Things for which I am grateful, even in this terrible loss:

I am grateful that Mitchell was in my life for 42 years.
I am grateful that he did not have any pain throughout all of this.
I am grateful that it was not sudden death, so that I could process all of it with him.
I am grateful that he spent his last weeks with just the two of us and not in the hospital where the outcome would have been the same but much worse for both of us.
I am grateful to Mitchell that he trusted me to care for him and that he made that choice, although I would have stood beside him with whatever choice he made.
I am grateful for the support this group offers to each other in such a kind way.

I honor Mitchell by keeping on each day even with a broken heart.

My best to each of you,
Lauren

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Thank you so much for this detailed reply. So sorry for your loss, but glad that you seem to be at peace with your decisions. I need more info like this to make decisions of my own. God bless.

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birdman518 | @birdman518 | May 30 7:26am
In reply to @ankona "about a year ago I had a baseball size meningioma removed from my brain. Unfortunately, it..." + (show)
@ankona

about a year ago I had a baseball size meningioma removed from my brain. Unfortunately, it turned out to be Grade 3 malignant, which is very rare. Now I'm on every 4 months MRI to watch for recurrence. I just had MRI and am waiting to see results next week. I'm considering what I will do if there is regrowth. The original tumor was found when my husband forced me to go to the ER, where they discovered it on an MRI. The NS said it needed to come out right away, and it did, 4 days later. Then 6 weeks of daily radiation treatment. So my husband is very proud of having "saved my life". The problem is, I haven't done or experienced anything in the last year that I would have missed if I had died. I have no children or other family except my husband, who is toxic to be around all day. I don't like my life the way it is, and if this MRI isn't good, I may decide to refuse more surgery and let it take its course. My tumor is so rare that there is no information on survival rates, how long that takes, and what that time would look like. I guess I need to find a counselor I could talk to

Jump to this post

My heart goes out to each and every one of you, and to your loved ones.

My beautiful loved one, known here as "Birdman518", passed away from a very rare form of metastasized melanoma to his very gifted brain, on Oct. 9, 2024, I do not have words to describe the depth of my sorrow. He was 68 years young.

My Birdie's first symptom that anything might be "wrong" was on Aug. 18, 2024 when he noticed a slight drool from one side of his mouth, as if he had had Novocain. We went immediately to our local ER, thinking maybe he had Bells Palsy. A CT scan revealed 6 tumors in his brain. The droop was, in fact, a stroke, from which, incredibly, he recovered and had no others (anti-seizure med and steroids).

I took him to Moffitt Cancer Center in Tampa where he was immediately admitted to ICU for more scans. After 4 days of this, Birdie asked for the truth, if ANYTHING they were proposing (MRI of the brain, mapping of the tumors, radiation of the tumors, brain surgery) was going to make his life better than it was "right now". One very honest doctor admitted that it would not, and that his type of melanoma was so rare they had no immunotherapy to try against it, although they were willing to "guess" and try "something".

He asked if anything they were proposing to do for his brain was going to address the tumor that was found in his liver. The answer was, "Not now".

He asked, "How long?" and was told by the very honest doctor, "You are unlikely to be with us in a month".

My Birdie told them that he was going home, where I cared for him with the help of hospice until he passed away 5 weeks later.

Things for which I am grateful, even in this terrible loss:

I am grateful that Mitchell was in my life for 42 years.
I am grateful that he did not have any pain throughout all of this.
I am grateful that it was not sudden death, so that I could process all of it with him.
I am grateful that he spent his last weeks with just the two of us and not in the hospital where the outcome would have been the same but much worse for both of us.
I am grateful to Mitchell that he trusted me to care for him and that he made that choice, although I would have stood beside him with whatever choice he made.
I am grateful for the support this group offers to each other in such a kind way.

I honor Mitchell by keeping on each day even with a broken heart.

My best to each of you,
Lauren

REPLY
1 reply
ankona | @ankona | May 29 8:06am
In reply to @colleenyoung "Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's..." + (show)
@colleenyoung

Hi @allisonsnow @lorinusbaum @shortshot80 @wandering @lizah @oldkarl @laurieann789 @hopeful33250 @tresjur @mollie59 @kenlucier @cjohn and @somefan. It's not easy to find a place where you can have a frank discussion with other people living with advanced cancer. I invite you to do that here.

Jump to this post

about a year ago I had a baseball size meningioma removed from my brain. Unfortunately, it turned out to be Grade 3 malignant, which is very rare. Now I'm on every 4 months MRI to watch for recurrence. I just had MRI and am waiting to see results next week. I'm considering what I will do if there is regrowth. The original tumor was found when my husband forced me to go to the ER, where they discovered it on an MRI. The NS said it needed to come out right away, and it did, 4 days later. Then 6 weeks of daily radiation treatment. So my husband is very proud of having "saved my life". The problem is, I haven't done or experienced anything in the last year that I would have missed if I had died. I have no children or other family except my husband, who is toxic to be around all day. I don't like my life the way it is, and if this MRI isn't good, I may decide to refuse more surgery and let it take its course. My tumor is so rare that there is no information on survival rates, how long that takes, and what that time would look like. I guess I need to find a counselor I could talk to

REPLY
2 replies
birdman518 | @birdman518 | Jun 18, 2023
In reply to @fmh1 "Colleen, thanks for serving as moderator! I have an idea to share with you and seek..." + (show)
@fmh1

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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@fmh1 I just saw your post. I have posted elsewhere here about my melanoma story, the upshot of which is that I was just diagnosed with it being metastatic (originally on scalp, now in neck lymph node(s)).
I just watched a video of Dr Seyfried on Youtube (only a few weeks old) where he explains his theory. I am going to try and find out if there is a way to find a doctor near me (greater Tampa Bay) that would implement his protocols.
Were you able to find anyone? I know that the FDA and Big Pharma have pretty much closed down all alternate theories and treatments, so I am guessing it will be pretty hard to find a doctor.
I wish you well!

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cruiser2019 | @cruiser2019 | Oct 6, 2022
In reply to @nogginquest "@hopeful33250 I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds..." + (show)
@nogginquest

@hopeful33250
I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds is really random at times. It almost seems like the doc is trying to trick the cancer into submission.

Some weeks I will receive the two immunotherapy drugs, chemo, listeria, and the GVAX. Other weeks it's just one immunotherapy, chemo, listeria, and GVAX. Then another week they may leave out the listeria but include both immunotherapy drugs without the chemo.

I don't care what they do as long as it does something.

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Hello
I wanted check on you see that how are you doing.

Can you give update on your condition?
Thanks

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lale2872 | @lale2872 | Oct 2, 2022
In reply to @gingerw "@lale2872 Welcome to Mayo Clinic Connect. I am including a link here to go to a..." + (show)
@gingerw

@lale2872 Welcome to Mayo Clinic Connect.

I am including a link here to go to a Prostrate Cancer discussion on getting help. When were you diagnosed with your prostrate cancer?
https://connect.mayoclinic.org/discussion/prostate-cancer-getting-help-questions-answered/
Ginger

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Hola buenas noches, en agosto de este año, me mandaron hacer una gramagrafia osea, la cual indica que no tengo metastasis.

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lale2872 | @lale2872 | Oct 2, 2022
In reply to @gingerw "@lale2872 Welcome to Mayo Clinic Connect. I am including a link here to go to a..." + (show)
@gingerw

@lale2872 Welcome to Mayo Clinic Connect.

I am including a link here to go to a Prostrate Cancer discussion on getting help. When were you diagnosed with your prostrate cancer?
https://connect.mayoclinic.org/discussion/prostate-cancer-getting-help-questions-answered/
Ginger

Jump to this post

Buenas noches , el diagnóstico fue en agosto de este año, me mandaron hacer una gramagrafia osea , la cual indica que no tengo metastasis en los huesos.

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