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Waiting on that dreaded appointment

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

It's about time for me to have my six-month follow up. Every time I get it in the mail it makes me have an anxiety attack. I have been doing this since 2007. Does anyone else ever dread/worry when you have your follow up scans. I have to take medication during that time because I can't do anything w/o thinking about my test result. And why does it take so long to get the results....I think that's the worst part.

FM

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

Fatmomma,

You may be a little young, but this was the famous slogan for Alfred E. Nueman of Mad magazine. Go online and you can see his bright smile.

I am a 9 year suvivor and I didn't worry about my first (pre diagnosis) CT scan which turned out to be positive, so why should I worry 9 years later. In the unlikely event there is reacurrance it usually shows up in the first year or two and when detected is early enough to address the problem. A positive outlook will do nothing, but help. A little worry is normal, but try and stay positive.

Best wishes,

Icemantoo

donna_lee's picture
donna_lee
Posts: 438
Joined: Feb 2009

Yes...there is stress related to having the next test, and the next. After having 2 recurrences, each a year apart after the initial surgery, there is stress. In 2009, I went thru 4 CT's and an ultrasound in 6 months, until it was determined I had a hemangioma (strawberry birthmark if on the skin) in the liver.
And because I have had so many CT's since 2006, my oncologist has modified the schedule -
CT once a year, 3 mo lab check, another 3 mo. and an abdominal/pelvic ultrasound with chest X-ray, 3 mo lab check; then start over.
I get antsy and a bit short tempered, but am bringing it down to only about a week prior to the tests and not for several weeks prior.
The physical part of the CT, altho technically not bad, does things to me. I have to take acetylcyst before and the morning of to facilitate the remaining kidney passing the dye.
I have a liter of pre and post hydration, again to help the kidney; and the crowning glory is the effects of the Barium sulfate-2 bottles-drunk while I'm getting the first liter dripped in. By the time I return to outpatient infusion, I have cramping and diarrhea. It's all over with in a few hours, buuuuuut still not fun. Panty liners, diaper wipes, and Desitin or A&D usually save the day.
I don't have my next CT till Sept. But as they say, the alternative's not so great, either.

I did see a psychologist a few years ago. She helped me realize that I am the type of person who likes to be in control of my health, emotions, what I do at home-work-or in the community.
When you have cancer, the control is taken away from you and you seem to be at the mercy of the next tests.
If you don't have a support group targeted just for cancer and survivors, I urge you to search for one. Family, friends, church, work...can support you; but only someone who has experienced the somewhat weird feelings that come with cancer can say, "I went thru that, and this is how I dealt with it," or "You're not crazy."

I hope this helps-just knowing that anxiety with tests is normal. It's not the test, per se, it's that you need to have them and what the results may bring.
Good luck and hang in there.
Donna
p.s Time to get test results. It all depends on how soon after the test they can be read by the radiologist and transcribed and sent to the oncologists office. You wouldn't want to go in 1-2 days later and be told the results aren't back, would you? Even with electronic storage and transfer, some places are not up to speed with the federal law that gives a 2012 deadline for it. And even if you will not be seeing the Dr., but a nurse, the staff will have to review each patient's reports to ensure procedure and any changes in treatment are agreed upon.
My oncology nurse knows that I pretty much understand the terms and vocabulary in a report, so I can call her and get a verbal summary within a couple of days. Then go in for the appointment, usually 1 week from the CT, to discuss everything, do labs, health update, get a copy of the test results and set up the next appointment.

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

Thanks....I really need this. This cancer stuff sucks. I get down a lot and ask myself "why me" I can't believe that I had cancer and only one kidney. How long can I live with one kidney...what if my son needs a kidney someday....all this stuff keeps going through my head. Now when I have a pain anywhere in my body the first thing I think of is it cancer. I just freak out. Just looking at the word "cancer" scares me. I have also got a phobia of a phone when it rings.....that's how I was told that I have cancer. I just panic when the phone rings because I am expecting bad news.....especially after I have my scan....I can feel my heart beating really fast and I have trouble breathing. I usually have to take a nerve pill everyday until I get my results.....and I'm am very depressed and don't want to talk to anyone. I will be glad when I have to have scans once a year....I have more time to relax.

FM

icemantoo's picture
icemantoo
Posts: 1654
Joined: Jan 2010

I may have been a little glib in my answer trying to inject a little levity to bring up the spirits. Please do not be offended. Humor is my way of trying to get thru this. While I seem to be clear of the Cancer issues I still have problems with Kidney function which I have addressed in another post today. May everyone find their way to get thru RCC and other related issues whether it be thru support of others in ths group, family support, mentor and caregiver support, prayer, a little humor or whatever combination of these resouces or whatever works for each one of us.

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

Icemantoo.....I'm not offended. I always love reading what you say. You make me and a lot others feel better after what you have to say.....so you don't need to be sorry. Look forward to reading more of your posts.

FM

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hey Momma,

They say "worry about the things you can control", great advice but hard to do. My father was a great problem solver, he was able to focus his considerable talents on resolving the issues that stopped him from achieving the goal. Perhaps it was his genes but I am retraining myself from dreading CT's to looking froward to them with the anticipation that they will confirm I remain cancer free, besides its another opportunity to astound the techs with my contrast chugging abilities.

If you commit to it and work at it little by little you can change your outlook and regain control of the situation even if it means seeking some professional help. Our attitude is something we control. I started with a bucket list (my goals) and then started making "long term plans" to cross things off the list. I/we cannot control whether our cancer will return but if we stress about it we are letting it win regardless. If cancer comes for me again I will focus on it then and I will dictate the terms, it will not control me. At least that is how I feel today, tomorrow may be different and if so I will deal with it then.

One day at a time,

Gary

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

Thanks Gary I needed that....still waiting on the appointment.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I still get the nervous nellies before my appointments.

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

lbinmsp.....you still have scans after ten years? I thought after five or six years of being cancer free no more scans. I have been having scans since 2007. The last time I had my scan (6+ months ago) they did not give me the dye....only had to drink that stuff. The tech told me that the dye is hard on your kidneys. I'm not so worried about me now, my mom is fighting colon cancer (worried about her).

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Normally at about the 5 year mark if you remain cancer free, they end the scans. However, I've had one recurrance of the RCC and a very early breast cancer in between. The NCCN guidelines, based on the recurrance, indicate that I am supposed to have yearly blood work and scans pretty much for the rest of my life. My doctors are diligent and want to ensure that I keep on keeping on (which is what I want too)! Once a year is tolerable - kinda like the dreaded mammo! But I do get the twitters just before. OH and also, they do blood work just before the scans to ensure my remaining kidney is healthy enough for the dye.

I'm so sorry to hear about your mother! Whispering a litle prayer for her (and you)!

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

Well my scan is tomorrow. I just want to get it over with. August will be four years since I had my surgery. Thank you also about my mom...she's doing OK. They got her on Erbitux. The doctor said this was a very good medication but expensive as hell.
Love you.
FM

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

got it over with....now have to wait a few days for the results....that sucks. Now I' home sick because of the stuff I have to drink. Wish me luck.
FM

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

How'd it go? Results ok? I hope? I'm doing mine next week - so going through a cleaning frenzy this week (my usual when a little stressed). I can say I'm not nearly as nervous as I used to be, my code for living these days is 'it is what it is'.

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