1. < Cancer: Managing Symptoms

Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Posted by Merry, Alumni Mentor @merpreb, Dec 6, 2018

It's extremely difficult to face the fact of recurring cancers. After treatments we try and get away from it all and live our life. Then along comes another CT scan or PET scan and POW, you have to face another cancer. My reaction was developing PTSD.

You can read what I wrote in my blog: https://my20yearscancer.com/blog/
How do we cope? How do we react? What do we do?
How have you all reacted to another cancer? Or the possibility of another one? Has your "already compromised" mental health been able to deal with it? How? Or not?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Merry, Alumni Mentor | @merpreb | Dec 9, 2018
In reply to @odikaflog "Merry, Three weeks ago, I learned of a recurrence of adenoid cystic carcinoma (ACC) in my..." + (show)
@odikaflog

Merry,

Three weeks ago, I learned of a recurrence of adenoid cystic carcinoma (ACC) in my lungs. It's been 6.5 years since my initial diagnosis of ACC in my parotid gland. When meeting with my ENT to schedule my annual head & neck MRI, suggested I get a CT chest scan so I have a baseline for comparing future scans (ACC almost always metastasizes to the lungs). I was asymptomatic and expected my lungs to be clear but I was wrong.

I'm spending my free-time reviewing clinical trails for ACC and working with my medical oncologist to figure out which trials/drugs make sense for me to pursue. I'm a pragmatist and want to do what I can to improve my odds.I also want to utilize my remaining time on this planet. How to spend my time wisely?I I asked myself that question when I received my first cancer diagnosis but didn't have an answer so read ife-coach book in search of answers. The book was awful. That's when I realized that I had to figure out the answers for myself..

You ask, "How do we cope?" "How do we react?" "What do we do?"

There aren't universal answer that apply to everyone. To answer these questions, you need to replace "We" with "I" and come up with answers that work for you.

Jump to this post

Welcome @odikaflog to Mayo Connect. When I wrote "we" I was trying to include everyone, but of course we all make our own decisions that hopefully work for "ourselves".
I am not familiar with ACC. I know that it is rare so information isn't that readily available. How are you feeling? You sound like you have a science back ground. Am I right?
I think the answer to "how do I spend my time more wisely so that I can get the most out of life" lies in thinking about what would please you the most? If you could look back and change something that you did or didn't do with your time now, what would it be, what would you do? What would make you the happiest, the most peaceful, the most stimulated and rewarding?
I am very glad that you are spending time wisely in research to see what will help you live the longest. My multifocal adenocarcinoma of the lung has taken up many 21 years of my life, almost 22 years. There is a lot of new data about it but the more they find out the more they become confused! Since I have participated in every kind of science study that I know of to help with this cancer I figured that sharing my experiences would both please me the most and help others. This led to my being a Mentor on Connect.
I hope that your research leads you to a long path in your journey. What is your present care?

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Dec 9, 2018

Here is a wonderful article written by Bernadine Healy (renowned American physician, cardiologist, academic, and first female National Institutes of Health Director.) fight and what she decided how she would spend her time on her decisions about her brain cancer journey.
https://health.usnews.com/health-news/managing-your-healthcare/cancer/articles/2011/08/09/cancer-and-me

REPLY
2 replies
Merry, Alumni Mentor | @merpreb | Dec 9, 2018
In reply to @merpreb "Here is a wonderful article written by Bernadine Healy (renowned American physician, cardiologist, academic, and first..." + (show)
@merpreb

Here is a wonderful article written by Bernadine Healy (renowned American physician, cardiologist, academic, and first female National Institutes of Health Director.) fight and what she decided how she would spend her time on her decisions about her brain cancer journey.
https://health.usnews.com/health-news/managing-your-healthcare/cancer/articles/2011/08/09/cancer-and-me

Jump to this post

The reason I am sharing this with you is because many of you have decided that you do not want to take certain tests or meds because they make you "less you". They make you foggy, forgetful, or in some way interfere with how you want to live the rest of your lives.

REPLY
sakota9 (Joan) | @sakota | Dec 9, 2018
In reply to @merpreb "Welcome @odikaflog to Mayo Connect. When I wrote "we" I was trying to include everyone, but..." + (show)
@merpreb

Welcome @odikaflog to Mayo Connect. When I wrote "we" I was trying to include everyone, but of course we all make our own decisions that hopefully work for "ourselves".
I am not familiar with ACC. I know that it is rare so information isn't that readily available. How are you feeling? You sound like you have a science back ground. Am I right?
I think the answer to "how do I spend my time more wisely so that I can get the most out of life" lies in thinking about what would please you the most? If you could look back and change something that you did or didn't do with your time now, what would it be, what would you do? What would make you the happiest, the most peaceful, the most stimulated and rewarding?
I am very glad that you are spending time wisely in research to see what will help you live the longest. My multifocal adenocarcinoma of the lung has taken up many 21 years of my life, almost 22 years. There is a lot of new data about it but the more they find out the more they become confused! Since I have participated in every kind of science study that I know of to help with this cancer I figured that sharing my experiences would both please me the most and help others. This led to my being a Mentor on Connect.
I hope that your research leads you to a long path in your journey. What is your present care?

Jump to this post

@merry. Did you happen to be in dr. Wigle’s study on multifocal adenocarcinoma. I was and wish I knew if anything came to light so to speak.

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1 reply
Merry, Alumni Mentor | @merpreb | Dec 9, 2018
In reply to @sakota "@merry. Did you happen to be in dr. Wigle’s study on multifocal adenocarcinoma. I was and..." + (show)
@sakota

@merry. Did you happen to be in dr. Wigle’s study on multifocal adenocarcinoma. I was and wish I knew if anything came to light so to speak.

Jump to this post

sakota- No I wasn't. I have never heard about him or any studies on Multifocal adenocarcinoma. What was the trial like? Do you have any more suggestions or information about these kind of trails? My radiologist, Dr. Henning Willers, MGH has doen a lot of research and has been published. I did participate in a Proton Beam Radiation Therapy though.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 9, 2018
In reply to @merpreb "Here is a wonderful article written by Bernadine Healy (renowned American physician, cardiologist, academic, and first..." + (show)
@merpreb

Here is a wonderful article written by Bernadine Healy (renowned American physician, cardiologist, academic, and first female National Institutes of Health Director.) fight and what she decided how she would spend her time on her decisions about her brain cancer journey.
https://health.usnews.com/health-news/managing-your-healthcare/cancer/articles/2011/08/09/cancer-and-me

Jump to this post

@merpreb
What a great article. Thank you for posting it.

REPLY
1 reply
padovani | @padovani | Dec 9, 2018
In reply to @merpreb "sakota- No I wasn't. I have never heard about him or any studies on Multifocal adenocarcinoma...." + (show)
@merpreb

sakota- No I wasn't. I have never heard about him or any studies on Multifocal adenocarcinoma. What was the trial like? Do you have any more suggestions or information about these kind of trails? My radiologist, Dr. Henning Willers, MGH has doen a lot of research and has been published. I did participate in a Proton Beam Radiation Therapy though.

Jump to this post

How did the proton go? I am having that for liver cancer

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1 reply
Merry, Alumni Mentor | @merpreb | Dec 10, 2018
In reply to @hopeful33250 "@merpreb What a great article. Thank you for posting it." + (show)
@hopeful33250

@merpreb
What a great article. Thank you for posting it.

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Hello Teresa- You are more than welcome. She was an incredible scientist and writer. That's how she wanted to stay I think.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Dec 10, 2018
In reply to @padovani "How did the proton go? I am having that for liver cancer" + (show)
@padovani

How did the proton go? I am having that for liver cancer

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@padovani- I was a bit tired but did not have any other side effects. This treatment is best described by my radiologist, Dr. Henning Willers, Director of Thoracic Radiation Oncology Service at Massachusetts General Hospital, Boston, MA explained,

“The goal is to have the last tumor cell killed on the last day of radiation. In that regard, radiation does not really work anymore after all the treatments have been delivered. However we have no test to directly measure tumor kill. We can only use a CT to see the delayed indirect effect of radiation where a dead tumor slowly shrinks over time as the dead tissue is being absorbed by the body. Tumor cells at the end of radiation may not know yet that their DNA has been lethally damaged. So, actual cell death may indeed be somewhat delayed. And then there also exists the possibility that the immune system eradicates any surviving tumor cells with DNA damage that may try to regrow.”

When do you start?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 10, 2018
In reply to @merpreb "Hello Teresa- You are more than welcome. She was an incredible scientist and writer. That's how..." + (show)
@merpreb

Hello Teresa- You are more than welcome. She was an incredible scientist and writer. That's how she wanted to stay I think.

Jump to this post

@merpreb
Merry,
You are right about that! I think I will look into reading more of her writings. I take it that the article you posted was from a book (or maybe a blog)? I would certainly be interested in reading more.

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