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

I am still working on not getting on that rollercoaster ride…
I like to have control in my life and cancer doesn’t give you much control, sooo hang on and lets see where the ride takes me. I was diagnosed in 2013 with early stages of CLL, I was a hot mess! Long story short I am surrounded by a loving supportive family, trust my oncologist and a renewed relationship with God. I am not alone… It will be ok, either way…One day at a time. I still have my moments but I work on accepting my new norm and focus on the positive in my life. I believe that I am doing all that I can ….supplements, diet, yoga, and my faith in His plan for me.
It’s not always easy, while I am sitting in the waiting room of my oncologist I often wonder “How did I get here? I don’t belong here!! Why me? But then my name is called ….I will be OK”

Wishing you the best

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@ssid

I am still working on not getting on that rollercoaster ride…
I like to have control in my life and cancer doesn’t give you much control, sooo hang on and lets see where the ride takes me. I was diagnosed in 2013 with early stages of CLL, I was a hot mess! Long story short I am surrounded by a loving supportive family, trust my oncologist and a renewed relationship with God. I am not alone… It will be ok, either way…One day at a time. I still have my moments but I work on accepting my new norm and focus on the positive in my life. I believe that I am doing all that I can ….supplements, diet, yoga, and my faith in His plan for me.
It’s not always easy, while I am sitting in the waiting room of my oncologist I often wonder “How did I get here? I don’t belong here!! Why me? But then my name is called ….I will be OK”

Wishing you the best

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Cindy @ssid

I see that you are a relatively new member to Connect – I’m glad that you joined us.

What a great story and great attitude! I’m so glad that you shared with us. I especially like your phrase, “accepting a new norm.” How very important that is. Having a supportive group of family, friends and faith can take you through the tough times.

Best wishes to you as well,

Teresa

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I am so relieved to hear those two concerns have been resolved in your favor. Thank you for your dedicated role as a volunteer moderator.

I am about to enter year 20 of my NET journey. I was diagnosed with a rectal carcinoid in 2020. It was found during my first colonoscopy by my sharp-eyed gastroenterologist. She did not know what she saw on the camera screen, just a tag of skin. Unfortunately the various doctors I saw as a result all told me a carcinoid is cancerlike, not really cancer, and that I was “cured” and should not worry any longer. The lesion was small, under 2 centimeters. I had not experienced any symptoms. I did the 24-hour urine test, which was negative.

It amazes me that just 20 years ago the medical community in a city as big as Dallas did not know what they were dealing with.

For 5 years I periodically looked for information on the Internet. I felt uneasy about assuming I was well. By pure luck an article was published on the front page of the daily paper about a local carcinoid support group. That gave me some new key words to search for, which led me to a rare specialist in New Orleans. He told me a rectal carcinoid has a tendency to return, and to return in the exact location of a previous tumor. He said I should have an annual colonoscopy; after 10 years I could “probably” relax about a recurrence. Sure enough, in year 10 the same gastro saw another skin tag. A cancer surgeon who specialized in abdominal and intestinal surgeries removed the carcinoid and assured me it had not penetrated the intestinal and that he had removed enough surrounding tissue to be fairly certain no cancer cells remained.

I still research on the Internet. I am not a bit reassured the cancer will never return, but I will have my 20th colonoscopy in 2020. The same gastroenterologist will perform it. I try to push the worry away, but it is always with me. Every stomach ache, every instance of excessive sweating, every bout of unexplained diarrhea sends me into anxiety, worry and stress. I am 68 now. I don’t think I can ever relax or believe the cancer is completely gone. I need to make a plan for the future, but I do not know where to start.

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@mgreene

I am so relieved to hear those two concerns have been resolved in your favor. Thank you for your dedicated role as a volunteer moderator.

I am about to enter year 20 of my NET journey. I was diagnosed with a rectal carcinoid in 2020. It was found during my first colonoscopy by my sharp-eyed gastroenterologist. She did not know what she saw on the camera screen, just a tag of skin. Unfortunately the various doctors I saw as a result all told me a carcinoid is cancerlike, not really cancer, and that I was “cured” and should not worry any longer. The lesion was small, under 2 centimeters. I had not experienced any symptoms. I did the 24-hour urine test, which was negative.

It amazes me that just 20 years ago the medical community in a city as big as Dallas did not know what they were dealing with.

For 5 years I periodically looked for information on the Internet. I felt uneasy about assuming I was well. By pure luck an article was published on the front page of the daily paper about a local carcinoid support group. That gave me some new key words to search for, which led me to a rare specialist in New Orleans. He told me a rectal carcinoid has a tendency to return, and to return in the exact location of a previous tumor. He said I should have an annual colonoscopy; after 10 years I could “probably” relax about a recurrence. Sure enough, in year 10 the same gastro saw another skin tag. A cancer surgeon who specialized in abdominal and intestinal surgeries removed the carcinoid and assured me it had not penetrated the intestinal and that he had removed enough surrounding tissue to be fairly certain no cancer cells remained.

I still research on the Internet. I am not a bit reassured the cancer will never return, but I will have my 20th colonoscopy in 2020. The same gastroenterologist will perform it. I try to push the worry away, but it is always with me. Every stomach ache, every instance of excessive sweating, every bout of unexplained diarrhea sends me into anxiety, worry and stress. I am 68 now. I don’t think I can ever relax or believe the cancer is completely gone. I need to make a plan for the future, but I do not know where to start.

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I am right with you with your feelings. I had stage 4 Neuroendocrine cancer of small bowel in 2013 with metastasis to liver and lymph nodes also found by a smart gastroenterologist. Surgery removed it all and surgeon said 99.9 percent chance of reoccurrence. I now have two spots on my liver which every MRI has a different explanation. Oncologist moved and saw a temporary oncologist who hadnt looked at my records and was nonchalant about whole thing. Just had another MRI with results being stable metastic lesions although both increased in size. Had a liver biopsy last November and results were benign although Dr. Wasn't sure he got the tissue. One thing after another. Just take one day at a time.

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@feebee

I am right with you with your feelings. I had stage 4 Neuroendocrine cancer of small bowel in 2013 with metastasis to liver and lymph nodes also found by a smart gastroenterologist. Surgery removed it all and surgeon said 99.9 percent chance of reoccurrence. I now have two spots on my liver which every MRI has a different explanation. Oncologist moved and saw a temporary oncologist who hadnt looked at my records and was nonchalant about whole thing. Just had another MRI with results being stable metastic lesions although both increased in size. Had a liver biopsy last November and results were benign although Dr. Wasn't sure he got the tissue. One thing after another. Just take one day at a time.

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Ugh. I am so sorry.

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@feebee

I am right with you with your feelings. I had stage 4 Neuroendocrine cancer of small bowel in 2013 with metastasis to liver and lymph nodes also found by a smart gastroenterologist. Surgery removed it all and surgeon said 99.9 percent chance of reoccurrence. I now have two spots on my liver which every MRI has a different explanation. Oncologist moved and saw a temporary oncologist who hadnt looked at my records and was nonchalant about whole thing. Just had another MRI with results being stable metastic lesions although both increased in size. Had a liver biopsy last November and results were benign although Dr. Wasn't sure he got the tissue. One thing after another. Just take one day at a time.

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I’m sorry to hear that you’re going tru all this.

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A cancer diagnosis can affect our energy level, which in turn affects how we react to life. I receive emails from an organization called The Mighty and they shared an article about Cancer and the Holidays. I thought you might find it helpful during this very busy time of year when a lot of us don't have the kind of energy to participate in al of the cooking, baking and visiting that used to be our normal. Here is the article:

"Mighty community leader Nicole Wilkinson
How will you navigate the holidays this year?

Hearing the word “cancer” is devastating, but it can be even harder to cope with a serious illness during the holiday season. What do you want your loved ones to know about your cancer battle and what it means during the holidays?

While you may desire and/or feel obligated to keep up with yearly traditions, gatherings and activities, your physical and mental health must take priority. Don’t feel guilty if you can’t keep up with your normal pace. This may be an opportunity to take things more slowly and enjoy the little things. Have a quiet day with a few friends baking cookies or request a simple meal around the table with family. Cancer doesn’t get to erase our joy! Appreciate the simple things and practice self-care. You’re worth it.

💡 Today's Takeaway

If you're not up for your usual holiday festivities, that's OK. You're still Mighty."

So my takeaway is to accept and respect my limitations for the month of December. What is your takeaway?

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Hi Teresa,
I do not have cancer, although I have had every test imaginable to rule it out. ButnI do have a rare kidney disease that is treated with chemo. I am on my third different treatment because the first two did not work. And i agree with your description of this being an emotional roller coaster ride. It may not be the best way to manage this but I am still working full time. I love my work. I feel useful and productive. I have been terrible about keeping up with my meditation practice, but that is so helpful, too. I had hoped to find a support group for people going through chemo but no luck. So I was happy to see your post.
Susan

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@sue1952

Hi Teresa,
I do not have cancer, although I have had every test imaginable to rule it out. ButnI do have a rare kidney disease that is treated with chemo. I am on my third different treatment because the first two did not work. And i agree with your description of this being an emotional roller coaster ride. It may not be the best way to manage this but I am still working full time. I love my work. I feel useful and productive. I have been terrible about keeping up with my meditation practice, but that is so helpful, too. I had hoped to find a support group for people going through chemo but no luck. So I was happy to see your post.
Susan

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I am so glad that you found this post, @sue1952. I am sorry to hear that you have not found a treatment for your kidney disease. Please join in this discussion, or others on Connect. You sound like a person who is living a full life in spite of a serious illness, I applaud you for that.

What motivates you to keep up this lifestyle and attitude in spite of a serious illness?

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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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@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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