The Roller Coaster Ride of Cancer

Posted by Teresa, Volunteer Mentor @hopeful33250, Aug 20, 2017

Hello to all of you who have had cancer diagnosis and treatments.

The past couple of months I have been on a roller coaster ride with concerns about cancer. I am a volunteer mentor here at Mayo Connect and I came to Connect after my third diagnosis of a Neuroendocrine Tumor (a rare form of cancer), so needless to say my stress level goes up whenever I have a scan, blood work, etc. that doesn't look completely normal. Recently I had a scan which showed a liver lesion (which was finally decided to be benign) and a mammogram that looked suspicious at first glance. Follow up tests showed all to be OK. I work with two different hospital systems in my area, so I have a good check and balance system in place. The thought occurred to me that many of us with cancer in our history probably experience similar roller coaster rides at one time or another.

Please feel to share with us how you deal with this when it happens. How do you "put your mind at ease?" What steps do you take with your doctors, getting second opinions, researching online, etc.?

Looking forward to hearing from you,

Teresa

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

@sue1952

I don't know Teresa. I have been always been healthy so my response to the diagnosis three years ago was anger. Although I have worked on acceptance, I still have an "attitude ". And I have always been fiercely independent. I have been studying Reiki and Healing Touch to try to learn acceptance and being gentle with myself and allowing myself to be more vulnerable. The disease has made me rethink life in general and my life in particular.

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You have pinpointed a lot of change, @sue1952. You are to be commended for that. Learning acceptance and gentleness for ourselves is an important step in this journey of life.

I recently saw a post on Facebook and it said something like:

People will come and go in your life, but the person in the mirror will be there forever. Be good to yourself.

It seems like you are practicing this. Good for you!

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SO TRUE! HOW WONDERFUL OF A THOUGHT!
SUNDANCE(RB)

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@sue1952

I don't know Teresa. I have been always been healthy so my response to the diagnosis three years ago was anger. Although I have worked on acceptance, I still have an "attitude ". And I have always been fiercely independent. I have been studying Reiki and Healing Touch to try to learn acceptance and being gentle with myself and allowing myself to be more vulnerable. The disease has made me rethink life in general and my life in particular.

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iI have gone through First Degree Reiki training. I use to have a person that integrated Reiki with regular body work. It was Great! If you cna find a Reiki person go have a session! It is wonderful what it does for the body. Speaking of that I have not had a session in years! going to see if my old Reiki Master is still around!
Sundance(RB)

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I’m currently being treated with Lanreotide (2nd shot) at Mayo Jacksonville. I’ve had people tell me I should get a 2nd opinion, In your experience has the 2nd opinion varied much from the first? .. I am still on that roller coaster..

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The one thing all cancer patients have in common -- regardless of where they are in the experience -- is that fear of recurrence; "once bitten, twice shy" syndrome? Did you ever stop to think if everyone was subjected to a scan every three months how many things would be revealed? When you put someone under scrutiny like that of course it will reveal things but, aren't you glad it does? Aren't you glad they find those suspicious spots early so they can start putting a plan together?
Right now I have a spot on my lung that even Mayo calls "indeterminable". But when every scan shows "no change" or "slight decrease" it is cause for celebration. Be thankful we get scanned so often - we're heading the bad guys off at the pass!

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@ta52

The one thing all cancer patients have in common -- regardless of where they are in the experience -- is that fear of recurrence; "once bitten, twice shy" syndrome? Did you ever stop to think if everyone was subjected to a scan every three months how many things would be revealed? When you put someone under scrutiny like that of course it will reveal things but, aren't you glad it does? Aren't you glad they find those suspicious spots early so they can start putting a plan together?
Right now I have a spot on my lung that even Mayo calls "indeterminable". But when every scan shows "no change" or "slight decrease" it is cause for celebration. Be thankful we get scanned so often - we're heading the bad guys off at the pass!

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Fear of recurrence. I have lived with those words for the last 30 years since I was diagnosed with breast cancer and had a mastectomy. Ten years ago I was diagnosed with thyroid cancer and had that removed. Now I am diagnosed with anal cancer. I know what those three words mean. No one is more grateful than I am that these scans exist. It’s difficult to measure your life in three month increments. It’s always there. It’s difficult to put it to the side and enjoy the life we have, but what choice do we have?

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@rioa21

Fear of recurrence. I have lived with those words for the last 30 years since I was diagnosed with breast cancer and had a mastectomy. Ten years ago I was diagnosed with thyroid cancer and had that removed. Now I am diagnosed with anal cancer. I know what those three words mean. No one is more grateful than I am that these scans exist. It’s difficult to measure your life in three month increments. It’s always there. It’s difficult to put it to the side and enjoy the life we have, but what choice do we have?

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You're right. I would much rather hear the words "we caught it in time".

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I have a rare aggressive tumor (NET in breast) and turned down chemo as I also have kidney disease and so many other co-morbities I doubt I can handle chemo physically or emotionally. I was given 1-2 years to live. Then I had a lumpectomy with better than expected pathology report, so oncologist said: I'm extending your life expectancy! This may sound a bit cold, but I did ask directly and we are able to work together.
That said, the first two months were pure chaos with conflicting pathologies etc. The past 5 months have been pretty good--limited medical treatments, travel, a lot of time with family, some creative projects, lots of live music, and more. Now I'm continuing in a gray zone. This morning I talked with my best friend about honing my approach and I've settled on thinking about life in 3 month blocks. This ties in with my blood work, but also seems like a reasonable planning unit--not too ambitious but somewhat aspirational. And if I suddenly end up in hospice I won't have planned too far in advance. I think some hopeful plans help but something like dwelling on trying to see my 4-year old grand-daughter graduate from high school doesn't help. I've been a meditator for almost 50 years. It may not help me "calm down" in an emergency, but long range it is a beautiful addition to daily life. Hats off to all of you for how you are managing.

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Hello to all of my fellow Cancer patients. Having had my Radical Prostatectomy performed 5 months ago I am still dealing with all of the physical, mental, emotional
and psychological changes associated with it. I did a lot of research when I was first diagnosed in August of 2022 and continue to do so. I have come to understand that “one may be free of Cancer but you are never free from it!” Like most of you, I will be monitoring my Cancer progress and recovery efforts for the rest of my life! Regardless of the type of Cancer you have, “it’s NEBULOUS at best, SINISTER at worst and VILLAINOUS the rest of the time!” I have also come to realize that no matter how many physician consultations you have prior to selecting your initial treatment protocol, reading and research you do etc. Nothing can really prepare you for all the numerous changes that occur and how your life changes so dramatically the day before your surgery and the day after! I am fortunate and grateful that my surgery was very successful and my prognosis as a “Low Risk Patient” is excellent. That being said, I also understand how Cancer affects every patient differently and there are absolutely “NO GUARANTEES” about any of it! You are either in remission or you are not! Those are pretty stark realities to live with yet all one can do us their very best, (along with their healthcare team), is to manage and treat it the best they can. I wish all of you the very best on your path and life journey for the Betsy best outcome and quality of life you can have.
GODSPEED

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I agree I have the anxiety with the procedures and tests. I try not to think about it too much except when I’m being prepped or in a tube of some sort. Is there a possibility of some calming medication one could receive ? I haven’t asked. Sometimes I can’t even say a prayer it’s too much.

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