Thursday, September 11, 2008

My health-o.k.

I realize I didn't post since all the tests I had. I think when I have to face my fears, I need to reach out more. The tests results all came back that I was still cancer-free. So I am relieved, of course. I did have a bone density scan and the results of that indicated I some bone-thinning in my neck. Other than taking calcium with vitamin D, nothing else is recommended at this time. I do wonder if some of this was an effect of the chemo, as it can be a side effect.

Follow-up Lacking

An article that was on

Study: Many colon cancer patients not followed up properly
Story Highlights
- 40 percent of study patients got all advised doctor visits, blood tests and screens
- Older patients, African-Americans, those with other health issues got less follow-up
- Colorectal cancer expected to be diagnosed in 149,000 Americans this year
NEW YORK (AP) -- Many colon cancer patients aren't getting the screenings recommended after surgery to make sure the disease hasn't returned, new research shows.Only about 40 percent of the 4,426 older patients in the study got all the doctor visits, blood tests and the colonoscopy advised in the three years after cancer surgery, according to the results released Monday by the journal Cancer.
While nearly all made the doctor visits and almost three-quarters got a colonoscopy, many didn't get the blood tests that can signal a return of colon cancer, according to the researchers at University Hospitals Case Medical Center in Cleveland, Ohio.
Whether doctors didn't offer the tests or patients failed to get them isn't known, said Dr. Gregory Cooper, who led the study. He said perhaps the follow-up care was being provided by doctors who aren't specialists and who aren't familiar with the guidelines.
"I would probably put most of the blame on the providers," said Cooper, a gastroenterologist at the hospital.
Colorectal cancer will be diagnosed in an estimated 149,000 Americans this year. Survival after five years varies from 90 percent for cancer that hasn't spread to 10 percent for advanced cases.
Cooper and his colleagues used a federal database of cancer cases and Medicare records for patients to see whether the guidelines were being followed. They focused on those 66 and older with less advanced cancer who had surgery that could cure them.
Patients were tracked for three years, beginning six months after surgery. When the study began in 2000, the minimum guidelines called for at least two doctor visits a year, twice yearly blood tests for two years and a colonoscopy within three years. Cooper said a colonoscopy is now recommended in the first year.
Overall, 60 percent of the patients didn't meet the guidelines. Of those who did, more than half actually got advanced medical scans such as CT scans and PET scans that are not recommended for routine screening. The scans could have been done because of signs or symptoms of a recurrence but the researchers said they suspect they were done for routine follow-up.
There was less screening among older age groups, African-Americans and those with other health problems.
"Quite honestly, I'm sorry to say, I'm not surprised about the findings," said Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society, which funded the study. Despite advanced medical technology, "our ability to deliver the recommended care to patients has left something to be desired."With the information resources available today, he said patients can take an active role in their follow-up care and make sure that they are getting the screenings they need.

Hereditary cancer? - This article provides the guideline for patient referrals for genetic counseling for cancer - breast and ovarian are on page 1; colorectal is on page 2. Specifically, for colorectal cancer:

- Personal history of early-age-onset colorectal cancer (< 50 years of age)
- Personal or family history of multiple colorectal carcinomas
- Personal or family history of polyposis (> 10 adenomas) in the same individual
- Personal history or family history of more than 1 hereditary non-polyposis colorectal cancer
(HNPCC)-related cancer (eg, colon and uterine cancer) in the same individual
- Personal history of an HNPCC-related cancer and:
o One or more first-degree relative with HNPCC-related cancer prior to age 50
o Two or more first- or second-degree relatives with an HNPCC-related cancer
diagnosed at any age
- Personal or family history of a hereditary syndrome associated with cancer (eg, HNPCC,
FAP, MYH-associated polyposis, Peutz-Jeghers syndrome, juvenile polyposis) with or
without a known mutation
-HNPCC (also known as Lynch syndrome)-related cancers include: Colorectal; Endometrial; Ovarian; Duodenal/small bowel; Stomach; Sebaceous adenomas or sebaceous carcinomas; Ureteral/Renal pelvis; Hepatobiliary/pancreatic; and Brain tumors (particularly glioblastomas)
􀂃 First-degree relative: parent, sibling, child
􀂃 Second-degree relative: aunt, uncle, niece, nephew, grandparents
􀂃 Third-degree relative: first cousin, great aunts, great uncles

Friday, August 8, 2008

Clean Endoscopy

I'm just now fully awake from the procedure yesterday. Because it was both a colonoscopy and upper GI endoscopy, I had double the normal sedative, so I would be out during the procedures. If it weren't for the prep before, these tests would be nothing. I was just really tired.

The endoscopy was totally clean. The CT scan I had showed a "masslike tissue in the stomach". I spoke to a friend, who is a radiologist. He said that the new CT machines scan so quickly, that it often happens that a stomach contraction (can happen when your body is digesting the barium you drink) will show up as a blur or a masslike tissue. He said that often the technician will catch it at the time and re-run that part to be sure. I'm glad to know my cancer center is using the latest machines and I was scheduled for the upper GI endoscopy in November, anyway.

As for the colonoscopy, six small polyps removed. Need to wait for the biopsy results. I had six benign ones removed last year and just to be on the safe side as six more grew, will do a colonoscopy next year, as well.

Yes, I cried before lying on the table waiting for the procedure to start thinking about if I had a relapse or another health problem to deal with.

Fighting Cancer Book - This is an on-line book that, although a bit dated (1988), the messages are still important. Topics include physician-patient communication, medical treatments, diet, and exercise.

Wednesday, August 6, 2008


I go for an endoscopy and colonscopy tomorrow, as a result of the yearly, guideline CT scan that was done last month. A masslike tissue was seen in the anterior of the stomach. My husband's cousin is a radiologist and I had him look at the scan results. He said that the newer CT machines work very quickly and it is not uncommon for a muscle contraction (which happens since you drink the barium) to show up blurred. Usually, if the technician catches it, then they just re-run the test at that time. In this case, to be safe, the endoscopy is needed. Since I was scheduled for on in November, it is only bringing it in by a couple of months - so not too much extra effort.

I remember, however, that when I read the report and was discussing it with the oncologist - the man I trust and feel safe around - although he said similar things, I believed he was sugar-coating the news. I think my fear was so great, I couldn't be soothed. I felt better after getting the opinion a second time, but am still nervous about tomorrow.

I also accompanied my friend who has rectal cancer to her surgical appointment. The surgeon strongly recommended the full surgery - which would result in a colostemy bag, but she was adament about not having one and so will have surgery next Tuesday to remove what they can. My fear for her turned into anger at the disease. We were talking after the appointment in the appointment room and she suggested we go somewhere else so they could have the room back. I responded that I didn't care what they wanted, this was about what she needed. She said she couldn't allow herself to get angry, as it takes her to place of self-blame for not having the screening sooner. I figure that cancer happens to a lot of people and why is not known. Just like all other good health practices people should do so.

Diagnosing Cancer

I went with a friend for her oncology appointment a couple of weeks ago and just now posting. My friend was diagnosed with rectal cancer few months ago and completed 5-6 weeks of radiation and chemo. She had an endoscopy/ultrasound last week and the appointment was to discuss the results and next steps. The biopsy they took from this procedure indicated no cancerous cells – a good sign, but not necessarily enough to base a final treatment plan on. So the next step is for a surgeon to remove the entire tumor (or as much as they can without going into the wall – basically a colonoscopy where they remove more of the tumor) and have it analyzed.

I post this, not to tell my friend’s story, but to blog my reactions. I have known some of these things, but having a bit of distance – i.e., not me – allowed me an additional perspective. My first reaction is how capricious and non-precise diagnosing cancer is, as if the treatment wasn’t bad enough. They have tests, but they are basically indicators. If they find cancer in the tests, then you have it, but if the tests are clean, it doesn’t mean you are clean. The term – No Evidence of Disease – is about all they can really tell you. So, the CT scans and blood draws and even limited or what the oncologist referred to as “frozen” biopsies are not definitive. It makes me angry and scared. I think about my friend who is having to decide on surgery that would impact her quality of life substantially on something she may or may not need.

My second reaction was to the oncologist. My friend goes to a medical center other than the one I go to and I experienced the same caring and expertise I have experienced with my treatment. I know some people’s experiences and incidents have not had positive, but many more have been positive than have not. I think this is a positive sign that oncology is aware of the “human” side of things. Her oncologist talked more in everyday terms – like referring to radiation as “frying the person”. I found this very helpful in understanding the complex issues of cancer and treatment. At times, though, it was confusing, because a term would be used loosely, that would result in frustration to understand what was being said. An example, were the terms resection and excision, which he used interchangeably. I (and my friend) had thought resection was when they cut through the colon wall and reconnected you.