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'What next?'...my long-term testing...

KathiM's picture
KathiM
Posts: 7874
Joined: Aug 2005

OK, just venting for a minute, I'm a true whinner at heart...lol!

As I posted, I just got the 'all clear' on a colonoscopy, and breast cancer exam showed nothing new...BUT...

Something naggy was in the back of my thoughts...so I went to a site that listed follow-up treatment (scans, etc) for colorectal cancer. To my surprise, my oncologist isn't following the guidelines....sigh...Why do I have to manage my own care? So I called my doctor, talked to a gal who will pass the message on that I am requesting a CT of the chest/ab/pelvic area...my last one was in May of 2007! The standard, I read, is one a year for the first 3 years....can we say 'watch for mets'?

Sigh...I don't want to be overreactive, but underreactive is what landed me in treatment in the first place. On top of which the organ that first had cancer (my rectum) is gone...so how could I 'tell' if there is a reoccurance???

Thanks for listening...I'm just tired of having to manage my own care...I am blessed that I am here..."You have to be breathing in order to whine!"

Hugs, Kathi

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I hear you on this one for sure! I always wonder about those who were "in remission" for years, didn't do regular followup scans, then are back in for treatment of advanced metastases... if they had only insisted on regular follow-up, would the recurrence have been found sooner and been easier to treat? The one blessing of my recurrence is that I AM receiving regular scans and CEA checks, and I am insisting on getting maintenance Avastin to give myself the best chance of continued NED! I plan on finding recurrences early, when they can more easily be treated to move me back to NED for as long as possible!
Mary

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

Yes that was my question a while ago. My first anniversary out of chemo I only had chest xray and ultrasound. Having said that, I do go for a CT in December. The reason my Onc did not want to overdo the CT was because of the radiation factor. I had a lot of radiation years ago for my Hodgkins disease. Yup - a two time cancer survivor. Also, the theory was that the radiation for Hodgkins may have caused the Colon Cancer in the first place. I have been telling Hodgkins survivors to get checked out. I had complained years ago about odd looking stools and had a sigmoidoscopy. That only checks out the sigmoid part of the colon. Guess what? My cancer was in the ascending colon which never got looked at. Makes me wonder if I shouldn't have had the full colonoscopy back then. I think we have the right to whine and questions doctors about our care. As they say, the squeaky wheel.... Also, it seems the protocols seem somewhat different here in Canada than in the US.

Cheers, Lance

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Mary,

I'm wondering about the maintenance Avastin you said you're on. I've had a good response to Avastin myself, but haven't heard about it being used in a maintenance sense. How often do you get it? and Is that all you get? (no Xeloda or anything else like that?)

Lisa

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Hi Lisa! I get Avastin every 3 weeks and yes, that's all I get while in maintenance mode. Since it's purpose is to keep tumors from creating a blood supply for themselves, maintenance theoretically will give me more time between active disease! When I go back on chemo, we continue with Avastin, but the other stuff is added (for me, it's been CPT-11, 5FU and Leucovorin with the 46 hour pump).
Mary

changing2
Posts: 118
Joined: Jul 2008

I hear you LOUD and clear!!!! I hate watching over my MD's shoulder but when I don't, I found out recently that I wasn't told that my CEA had been steadily rising for a month,the time before that my CEA went from 2 to 10 in 3 months and the nurse told me the MD "wasn't worried about it"...I explained my CEA was only 4.8 when I had a baseball size tumor and 17 possitives nodes....MD got on the phone real quick then...I was ticked :) OK, now I too feel better...been carrying around that mess way too long:)
NOW, you keep on them and get the tests done....they're probably right...and your doing fine....but you're the one who needs peace of mind! Let us Know how you make out!

KathiM's picture
KathiM
Posts: 7874
Joined: Aug 2005

Thank you for listening...I feel so much better! Now, if only my oncologist would call...I'm giving her till Friday, and then I'll call again...

Hugs, Kathi

CanadaSue's picture
CanadaSue
Posts: 339
Joined: Apr 2006

Kathi,

Keep on them.

Insist on the testing!

Sending good vibes your way!

Hugs,

Sue

bigCrandy
Posts: 75
Joined: Sep 2008

Hey Kathi, I don't think you can have enough tests done, although I've heard that too many Cat Scans are not good for us cancer patients. I've had 7 since surgery last April, due for number 8 in two months. I had scans every 3 months since finishing first round of chemo in Nov. 07. I thought they were milking the insurance and overdoing it. I'm glad they were persistent cause sure enough, the cancer came back in lymph nodes in abdominal area. Started round 2 last month. I'm glad they caught it when they did cause I sure didn't feel anything different. It's just a recurrence and hasn't metastized yet. They gotta keep a close watch on this stuff so they can nip it in the bud. Neck to thigh CT scans are the best. Can't be too cautious. Hang in there, never give up! Later, Randy

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

I had a cat scan every 3 mos for 3 years then every 4 mos for a year and then every 6 mos, that put me at 5 years. I will now get scanned in a year. I had my surgery in Boston at a major cancer center. I always wonder about those who don't get scanned alot. With every scan I have had chest, abdomen and pelvis done.

Maureen

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Kathi,

It's definitely a drag to always feel like you're your only own advocate on watching the health care checks. BUT, I've also found that doctors get busy and, although it's no excuse, we often do need to pay attention and keep on top of things ourselves. I'd be upset if I were you, though, at your Dr. dropping the ball with follow up care and scans. Go get your scan scheduled asap! It will probably be fine, but is definitely overdue.
Just wanted you to know also- I appreciate your postings on this forum and you've had a couple of helpful answers to questions of mine, also. You've got a great attitude. You go, girl!
Lisa

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Feel like I have to weigh in on this one.......per previous comments I made on previous
discussion topic. I think because I was a Stage 2 with no other involvement and the
so called statistics showed that recurrence rate was not high, I and the onoclogist got lax.
I think if I had had a scan about six months earlier I would have been able to catch the
mets to my liver before it got very large and it would have been a better situation. Stage
2 has been a controversial area for a long time and no chemo has been recommended in a lot
of cases. But I have been seeing my onc since 2004 every six months and when my CEA started
going up that is when the scans were ordered. My onc told me the other day that she had
just had her second case of a Stage 2 with recurrence to the liver and she has been in a
state of surprise about both my case and this one. I wonder if my staging in 2004 was
a little more than Stage 2 even then; that is something I will never know. Anyway, I
will be having scans every three months from this point. It will be nice when the researchers
finally decide what to do with us Stage 2 people; I think more and more oncs are beginning to
order chemo and keeping a closer watch on this stage.

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Plus, I had been getting scans every year since 2004 and also a colonoscopy in 2007
after my initial surgery in 2004. But, as I said, we slipped and too much time went
by before my last scans were done that showed liver mets. There is a difference in the quality of scans here where I live and I think there is difference in quality of radiologists.
That caused confusion about what my scans were showing and the differences in opinion between
my onocologist and radiologist; that resulted in my going to the University of Cincinnati
Medical Center and having second set of scans done and those were better quality and I got
a different opinion. From now on, I will be getting my scans at the UC Medical Center. I don't think the quality of medical care is equal across the board anywhere; it is sometimes
difficult to be an informed consumer in the medical world and you just have to keep as
informed as you can. The National Institute of Health which operates all the NIH Cancer
Research Centers around the country which some of us may be getting treatment from has a
website and I would never doubt what they have on that website in terms of information.

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