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wierd emotions

amyboston's picture
amyboston
Posts: 92
Joined: Oct 2009

I don't know how to begin this. I was happy, even overjoyed, about my MRI and CT, and cea being clear.

Then I started to wonder, if my MRIs and CTs didn't show anything, maybe they got my
diagnosis wrong...maybe I don't have cancer...maybe they made a mistake.

Has anyone else felt this way? This has me really confused, because they printed off the photos of the colonoscopy...and it showed a tumor. But I am questioning the whole diagnosis.

Amy

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

CT scan doesn't necessarily show the colon tumor- that's why they say a colonoscopy is he only way to rule out cc.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

The CT scan would be to see if there was cancer in the liver, spleen, kidneys, bladder, ovaries, etc.... and not to verify the cancer in your colon. I also had a 'clean' CT before surgery to remove my Stage III colon cancer.

What was your CEA? Some people have 'normal' CEA's even with advanced cancer so it's not always an indicator.

Isn't your surgery next week?

amyboston's picture
amyboston
Posts: 92
Joined: Oct 2009

My surgery is two weeks from today, Nov 13th.

I was told my cea was normal...the nurse didn't give me a level.

Amy

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Hi Amy

I think it's pretty normal to feel weird emotions, to know what is real and not real, and to second guess after a cancer diagnosis. There's a whole new language to learn, lots to research, work to put together your western medicine team, your complementary medicine team, and your daily support team . Then what about family, work, friends, insurance, who to tell, sorting through all the weird responses people to say to people living with cancer and on and on. My experience was is that after you actually start treatment, things settle down. Why there is even time and opportunity to fire part of your team if you don't like what they are doing like I did with my first medical oncologist.

Below is a response form Michael Lerner of Commonweal in Bolinas, CA to the question "what would you do if faced with a cancer diagnosis." I found it useful to read after I completed my treatments when the period of surveillance starts, with its scary moments, and it confirmed that I, and my team, had done a lot of what he refers to for my care and healing.
http://www.commonweal.org/pubs/choices-healing.html

all the best, Leslie

Michael Lerner
Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer 1994 MIT Press

“I would pay a great deal of attention to the inner healing process that I hoped a cancer diagnosis would trigger in me. I would give careful thought to the meaning of my life, what I had let go of and what I wanted to keep.

“I would give careful thought to choosing a mainstream oncologist. I wouldn’t need someone with wonderful empathetic skills because I have other people to provide that. But I would want a doctor who is basically kind, is on top of the medical literature regarding my disease, takes the time to be deeply involved in treatment decisions, supports my use of complementary therapies, and sticks with me medically and emotionally if I were facing death.

“I would use conventional therapies that offered a real chance for recovery, but I would probably not use experimental therapies or therapies with a low probability of success that were highly toxic or compromised my capacity to live and dies as I choose.

“I would use complementary therapies. I would look for a good support group and a psychotherapist experienced in working with people with cancer. I’ve been a vegetarian for many years but I would look for ways to enhance my nutrition. I would meditate and practice yoga more often, and spend more time in nature, taking walks in the woods, by the ocean, and in the mountains.

“I would definitely use traditional Chinese medicine, both herbs and acupuncture.
I would strive for life and recovery with every possible tool and resource I could find. But I would also work to face death in a way that deepened my growth and led to some resolution.

“I would spend time with people I value, and with books, writing, music, and God. I would do everything I could do that I didn’t want to leave undone. I would not waste time with old obligations, though I would try to extricate myself from them decently.

“I would try to live my own life in my own way. I would try to accept the pain and sorrow inherent in my situation, but I would searchingly for beauty, wisdom, and the joy.”

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

First read this 5 years ago. Still love it. Thanks Leslie

Rob; in Vancouver

amyboston's picture
amyboston
Posts: 92
Joined: Oct 2009

I too, liked this, thank you so much for sharing it.

Blessings,
Amy

amyboston's picture
amyboston
Posts: 92
Joined: Oct 2009

I too, liked this, thank you so much for sharing it.

Blessings,
Amy

amyboston's picture
amyboston
Posts: 92
Joined: Oct 2009

I too, liked this, thank you so much for sharing it.

Blessings,
Amy

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

My Gastro said he'd only seen 2 tumors like mine (colonoscopy) in 14 years that were NOT cancer. I convinced myself that I would be number 3.

I wish it were a mistake and you are cancer free, but I think you're grasping at straws. The CEA could be very high and yet normal for someone with cancer.

I'm very thankful that your CT didn't show any mets and make you Stage IV. Let's pray your lymph nodes are clear and that you're a Stage II. :o)

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"-maybe I don't have cancer...maybe they made a mistake.
-they printed off the photos of the colonoscopy...and it showed a tumor.
-But I am questioning the whole diagnosis."

Regardless if the results are clear, or bad, you are entitled to
a second (and third) opinion. All good physicians welcome
the critique of their peers, those that get mad, should get lost.

There's no rush, is there? Make an appointment with a colorectal
surgeon to look over your scans and colonoscopy prints, and
get another opinion.

The "operation" might be able to be done with the minimum amount
of invasion. Laparoscopic surgery is now widely used to remove
small tumors, and the recovery time is reduced to less than that
of a minor operation.

Colon cancer is a problem, because it rarely gives a problem
or symptom until it's too late. I never had a bad blood test,
and I was healthy, having to rarely see a doctor for anything.

It wasn't until I thought I was suffering from IBS, there was
absolutely no indication of any kind of a problem.

The tumor they pulled from my body had totally obstructed
one part of my colon, and grew out and into the next side of
the same colon. It would have killed me, had I waited any longer
for surgery.

That is how quietly colon cancer moves!

So don't be scared poopless, take your time and stay sane,
and make another appointment with another colorectal surgeon.
Gastrointestinal specialists are also good for diagnosing these
types of problems.

Get other opinions outside of your locality if possible, and study
their findings and prognosis. Then, make your choice.

You're not alone, and there's nothing to fear, so relax.

Be healthy!

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Hi Amy,

They must have taken some biopsy samples of the suspected malignant tissue during the colonoscopy. That would normally confirm the cancer. Do take these concerns and questions to your onc or your surgeon. They should be able to show you all the info that they used to confirm their diagnosis. What was shared upstream makes sense. CT, MRI, are mostly looking at other organs for spread. That they are clear is really great news.

"Maybe I don't have cancer... maybe they made a mistake..." Oh! Wouldn't it be nice!

BTW... My Grandmother and Grandfather lived in Boston. I still have an Aunt out there who is nicely retired in Eastham on Cape Cod, and a whole bunch of cousins. I was a great BoSox fan in the days of Yas!

I hope you get the answers you need over the next couple of weeks.

TTFN... Rob; in Vancouver

amyboston's picture
amyboston
Posts: 92
Joined: Oct 2009

I love the Cape, especially the National Seashore and Beach Forest and of course the dunes.

Thanks for the support and encouragement.

You don't seem old enough to have been a Yaz fan.

Blessings,
Amy

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

You are kind! Yup born in '57. Had a great visit to Boston around '68. Saw the Redsox at Fenway then. Followed them a bit through the '70's.

Now I am wondering why we are still playing baseball in November!

Be well... Rob

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

CT, MRI, are mostly looking at other organs for spread. That they are clear is really great news to hear. Call the person who did your colonoscopy for more info. Any Path report yet? When the person who did my colonoscopy knew is was cancer without a path report because of the size and what it looked like. She was right is was cancer (Stage 3). Remember these people work for you. Call them anytime you have a question. Get email address from all your doctors. I mostly email mine and get emails back most of the time the same day. If they seem to not want to talk to you get somebody else. This is YOUR life.

I'm so happy to hear that you scans came back clear.
Brooks

amyboston's picture
amyboston
Posts: 92
Joined: Oct 2009

Brooks, and everyone...

They did the biopsy, they took a sample during the colonoscopy. That's how I got the diagnosis of Stage IIB. They called the tumor a mass and gave me the colonoscopy pictures after the procedure.

I just had a weird day on Friday.

Blessings,
Amy

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Amy -

You are still entitled to a second opinion, and with any surgery
(including dental work), you should always get another opinion.

The procedure for removing the tumor can be radically different
from one surgeon's expertise to another's.

Actually, procedures for many, many operations can be radically
different depending on the surgeon. It could mean a major scar,
versus tiny incisions, or a permanent ostomy, versus a temporary
ostomy, or none at all.

Do yourself a favor, and get a second opinion.
(not mine, someone else's)

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