Blood tests and brain tumors

This is a good news/bad news kind of post. No, not about me - I'm fine, well as fine as I ever am these days. But two bits of news to think on this morning.

Sheryl Crowe has a benign brain tumor. We knew that unless you have been living under a rock. (She's a celebrity so of course it is more important than anything about the European economic crisis or the slaughter in Syria. Nothing against Sheryl but the media gets its hype all wrong.) Its been all over the news. Its stable, it does not require surgery, its not that uncommon. But what is the bad news is that if you had breast cancer, the ER/PR positive type, your risk for a brain tumor is increased.

"But Crow’s meningioma isn’t due to breast cancer cells spreading to her brain. Rather, it may be driven by the same reproductive hormones that also played a role in her breast cancer.

A quick literature search revealed more than 350 studies examining the connection between meningiomas and breast cancer. One published in the journal Surgical Oncology found that both meningiomas and the most common form of breast cancer are associated with an increase in estrogen and progesterone receptors on cells. They’re also both likely to strike women in their 50’s and 60’s. Crow is 50.

Other research has shown that women with meningiomas are 40 percent more likely to have breast cancer than those without and are 50 percent more likely to have endometriosis where the uterine lining grows outside the uterus causing pelvic pain."

So that puts all of us ER/PR breast cancer women in the increased risk of a brain tumor. Gee, thanks. Cancer, the gift that keeps on giving.

But on to a more positive note, there is a new blood test being studied (because we needed another study you might recall) that may help determine which women are more likely to have their early stage breast cancer recur. Blood tests done before surgery are done to look for circulating tumor cells in the sample. If you have more circulating tumor cells (or CTCs for short), you are more likely to have a recurrence. And maybe if you don't have any CTCs, you don't need chemo. I would have liked that test and maybe been able to skip chemo and all its lovely side effects.

I will put this one in the good news category and even dare to call it progress, even though it still needs more research - like everything else.

Carcinogenic cancer treatment

Cancer treatment can be carcinogenic. Chemo can cause leukemia and lymphomas. Radiation can cause other cancers. Actually having these treatments greatly increases your risk of later cancers, never mind the fact that once you get cancer the first time, you are put in the higher risk category already.

A study was done (because we needed another study - we are keeping these researchers employed)  on people treated with radiation for cancer while young, are at greater risk of developing breast cancer.

"Risk of Breast Cancer by Age 50

• Women treated with chest radiation for any pediatric cancer: 24%
• Women treated with larger dose of chest radiation for Hodgkin lymphoma: 30%
• Women with BRCA1 mutation: 31%
• Women with BRCA2 mutation: 10%
• Women with average risk: 4%"

""We need to know how to take care of survivors and change childhood cancer therapies, so this doesn't happen to the next group of survivors," says Lisa Diller of Boston's Dana-Farber Cancer Institute. "Children treated for Hodgkin lymphoma today are treated with therapies that try to maintain the excellent cure rates but use as little radiation as possible."

The Children's Oncology Group recommends women treated with higher doses of radiation begin breast cancer screenings at age 25, or eight years after finishing radiation, whichever comes later, using both mammograms and MRI, or magnetic resonance imaging. Typically, medical societies recommend women at normal risk for breast cancer begin getting screening at age 40 or 50.

Diller says doctors may need to re-evaluate those guidelines for pediatric cancer survivors. She found that even women given lower doses of therapeutic radiation had a significant risk of breast cancer. That risk may continue to rise, too, as childhood cancer survivors age. Few survived the disease before the 1970s, so many of the first survivors are just hitting middle age."

So all of us 'guinea pigs' so to speak back then are testing the limits of the five year survival rates now that we are 30 or more years out. I did not have chest radiation but I was treated with radioactive iodine to get rid of the rest of my thyroid in 1981. Did that cause my breast cancer or increase my risk of breast cancer? I have no idea. My doctors tell me my cancers are unrelated but exposure to radiation or radioactivity is a known cancer risk so who knows.

So I guess they used toxic chemicals and radiation to save us but these same items that saved us may help undo us in the long run. Maybe if they can't cure cancer yet, they can find treatments that aren't as toxic in the long run.

Belonging vs. loneliness

The opposite of loneliness is something along the lines of belonging. We want to belong. Humans are social animals and have a need to belong to a group in a sense. The majority of us want to be social and interact with others.

We create our lives with our friends and family around us in a cushy little nest. Then a cancer diagnosis takes us and yanks us out of our comfort zone and throws us into the world of biopsies, tests, procedures, medical misadventures, things that will make you feel a little 'pinch', oncologists, radiologists, chemotherapy side effects, radiation blistering, and all sorts of fun and games we don't understand and our friends and family can't even begin to. We no longer belong. We are cast off into the stress filled world of cancer.


Cancer and other icky medical diagnoses can be very isolating. We feel like crap. We are overwhelmed with medical stuff. No one understands. We are lost adrift in our little worlds with out support.

We then seek to belong again. That is where we find support groups, online message boards, little groups on Facebook, and learn to belong again with people who understand all these yucky things that make up a cancer diagnosis. We need to find a new nest to support us and our medical ups and downs. We learn from each other and regain ourselves. We may be different but we are still here - and mentally sane (or mostly). (The sanity part can be questionable but we do try.)

ASCO announcements

Every June, ASCO (American Society of Clinical Oncologists) has their annual conference where all sorts of announcements are made on the latest advances in oncology and cancer treatments. The conference this year is going on right now, June 1-5 in Chicago. This is why the news is full of all sorts of 'exciting' cancer advances.

PD-1 is one of these announcements.

"Researchers gave the drug to nearly 240 patients with advanced melanoma, colorectal, prostate, kidney and lung cancers. All the patients had tried up to five other treatments, which failed. After up to two years on the drug, tumors shrank in 26 of 94 patients with melanoma, nine of 33 patients with kidney cancer and 14 of 76 patients with lung cancer.

The drug was not without side effects. About 14 percent of patients in the trial reported conditions such as skin rashes, diarrhea or breathing problems."

If you look at the numbers closely that is 27% of the melanoma patients, 27% of the kidney cancer patients, and 18% of the lung cancer patients. And 14% had side effects. So less than 1/3 of the people had success with this drug after running out of other options. But what happened to the 2/3 of the patients who didn't have success? Another treatment failed them.

But hidden in this, I do see a glimmer of hope. What made those 1/3 of the people different from the 2/3? Is there something in their genetic make up which made this successful? That's where I see hope.

Another note is that the rate in which kidney cancer reacted is significant in that normally the rate is around 7%. See this article for more explanation.

T-DM1 is another advancement. It was used to treat aggressive Her2 positive breast cancers. It was tested on a group of about 1000 women who were split into two groups so it was tested on about 500 women.

"Women getting T-DM1 had 9.6 months of progression-free survival, the time between starting the treatment and the cancer getting worse again, compared with 6.4 months in the standard therapy group. That's a median improvement of three months.

This may not seem like a long time, but as Dr. Eric Winer of the Dana-Farber Cancer Institute in Boston explains, it means a lot to the individual patient.

"I've had patients on this drug for one, two, three years," he explained. Winer says that if a patient gets an additional three months before the tumors start growing again each time she goes through a treatment cycle, that can add up to almost a year.

Blackwell says that after two years, 65% of women getting T-DM1 were still alive, compared with 48% in the control group."

I would hope that today and tomorrow more advances will be announced that will expand on these and we will see more progress towards a cure.

How long would you want to wait?

For biopsy results for potential cancer? About 30 seconds. In New Zealand you get to wait 10 days, unless for breast cancer where the wait currently is 5 days. This five day turnaround is now under fire due to errors by pathologists who are rushing to get their job done.

Where I go for treatment, a biopsy is usually available in a few days - sometimes longer for other cancers. I have learned they usually tell me it will take about a week but often I hear much sooner.

There are two sides of the waiting for results issue. First comes the patient who wants the results in a nano-second. (Thank you to Amazon to training the public to expect everything instantly.) Patients don't want to wait. Waiting causes stress. Waiting causes crankiness AND crabbiness. Waiting causes that little voice in your head to tell you that it will be really BAD,

But on the other side are the pathologists who need the time to do their jobs. We don't want them to rush and make mistakes - which is what happened in New Zealand (which is why there was an article on this that I read). That is really BAD.

However I find the idea of waiting 10 days for a biopsy result to be too damn long.

The ugly side of pinkification exposed

Finally the film, Pink Ribbons Inc, is opening in the US. I blogged about this Canadian made film earlier this year. But now that it is out, there are more reviews available which gives a better idea of its focus.

Forbes.com has reviewed the film and provides these insights.

"Patients with various stages of breast cancer, public health advocates and researchers raise three important points:

No. 1: “Pink ribbon” marches, marathons and events (illuminating the Empire State Building in pink to create breast cancer awareness, for example) not only waste resources, they mislead public opinion about what’s necessary to treat the disease.

No. 2: Financial benefits to research efforts from “cause marketing” (in which brands such as Yoplait and Ford declare themselves “pink”) are minimal, as is the gain from manufacture and marketing of pink merchandise.

No. 3: The pink industry’s heavy use of war imagery (describing “battle” against breast cancer, for example) is misleading and harmful to the physical and psychological well-being of those whose cure–and lives–depend on effective medicine, not metaphor."

The LA Times makes these comments:

"Even after massive fundraising efforts ($1.9 billion in the last 30 years from Susan G. Komen for the Cure alone), a woman's lifetime odds of contracting the disease have narrowed from 1 in 22 in 1940 to 1 in 8 today. Little of that money has made its way into research into causes, notably environmental factors like contaminants from plastics or livestock treated with hormones, the film argues.

Instead the push has been for early detection and developing a cure—two areas that benefit pharmaceutical companies but not necessarily patients, a mere 20% — 30% of whom come from high-risk groups. You can't cure what you don't understand is one of the film's sobering messages."

NPR also states: 

"As one woman observes, describing the treatment of cancer as a "fight" or a "battle" suggests that the disease is always beatable if patients make a heroic effort. The implication is that people who die "weren't trying very hard.""

[Anyone who tries to tell a woman with breast cancer that she isn't trying very hard needs is pretty damn stupid.]

"The disconnect between research and results is one of Pink Ribbons, Inc.'s keenest points. On-screen commentators contend that breast-cancer research is poorly coordinated and badly focused. Fewer than 30 percent of patients have a genetic proclivity for the illness, which indicates that most cases stem from environmental causes — yet relatively little attention is paid to prevention, or to chemicals that mimic estrogen and disrupt the human endocrine system."

A very thought provoking documentary on the ugly side of pinkification. Yes the film gives opportunities to for Komen and other non profits to offer their side but I think these messages are clear. Pink isn't helping. So please go watch the documentary if you can and learn more. If you wish to wear pink ribbons, just be sure to understand what the pink portion is going to and who or what it benefits.

My only problem with this film is that the closest it is showing to me is about 60 miles away - on the very tip of Cape Cod - which isn't very convenient in the summer.

Celebrating?

Tomorrow is my blog's fifth birthday. Five years ago I started this little means of communication. Who knew that over 1800 posts later, I would still be writing it? And still going to the (damn) doctor all the time.

It also means its been five years since my breast cancer diagnosis. I'm not celebrating. Some people jump up and down and say five years and have a party or some other celebration. I don't feel the need.

For some reason, cancer statistics always include five year survival rates. That doesn't mean squat. Its a number that was selected and used but cancer can still recur later. I did some research on this (which means I asked Dr. Google) and found that the Mayo Clinic provides some insight. (The Mayo Clinic is a bit smarter than Dr. Google so I will believe them.)

First it gives some back ground on what a survival rate is:

"One of the questions many people ask when first diagnosed with cancer is about their prognosis. You might want to know whether your cancer is relatively easy or more difficult to cure. Your doctor can't predict the future, but an estimate is possible based on the experiences of other people with the same cancer."

"Cancer survival rates are based on research that comes from information gathered on hundreds or thousands of people with a specific cancer. An overall survival rate includes people of all ages and health conditions who have been diagnosed with your cancer, including those diagnosed very early and those diagnosed very late."

This means based on other people with the same diagnosis, this is what you can expect. If a five year survival rate is 90% it means, that 10% of the people with the same diagnosis didn't make it five years while 90% did. The cup half full says 90% is the number to focus on. Its a statistic so when you focus on these you become a statistic.

Also, as I said, they don't mean squat:

"Cancer survival rates often use a five-year survival rate. But that doesn't mean that cancer can't recur beyond five years. Cancer can recur many years after successful treatment. Discuss your risk of a cancer recurrence with your doctor"

So in other words, they are statistics and you need to talk to your doctor about your particular case. This is your standard lawyer sanitized, Dr Google medical speak, CYA language to say they are merely numbers and don't really mean anything.

So no I'm not celebrating. Not yet, I'm waiting until they find a cure.