Cancer again....

Did you know that if you have cancer once you have a 3.5-36.9% chance of getting an unrelated second cancer (been there, done that). And that 70% of cancer people have a comorbid condition which requires better medical care for the rest of their life. So maybe you smoked and got one cancer, 15 years later you find you have lung cancer, eve though you quit smoking at your first diagnosis.

No I don't make this stuff up. Someone finally did a study on people who have cancer once and rates of developing a new cancer. They found out lots of interesting things:

• Many people who have cancer once do not take steps to reduce the risk of getting a new cancer.
• People who are successfully treated for early breast or lung cancer are likely to live a long time, thus increasing their risk of developing a new cancer 
• They are excluded from clinical trials which may prevent them from having access to the best potential treatment for thei new cancer

So where does this leave us? 

• Post cancer patients should continue to see specialists after a cancer.
• They should  receive  counseling on how to reduce their risk of additional cancers even more than people who have not had cancer previously. 
• Post cancer people should be included in clinical trials. 

Us cancer people need to stick together and reduce our risk of more cancer

Favorites During Chemo

When you are starting chemo, you are warned not to eat your favorite foods during chemo because if chemo makes them taste bad you will never be able to enjoy them again. It's also true of activities that you are able to enjoy doing during chemo.

When I was in chemo, I spent a lot of quality time watching bad tv with the cat sitting next to me. The cat would sit next to me all the time. Watching tv was okay because I could barely focus and could watch the same movies over and over again. They were peripherals.

I still have not eaten one shrimp or scallions. If I smelled scallions during chemo I would have to leave the room because of the smell.  I used to love shrimp and don't really remember eating them much during chemo, but I can't stand them these days.

During chemo, I started knitting and crocheting. This has since lead to weaving and an unhealthy stash of yarn. I don't crochet as muss I used to but I definitely knit and weave. I enjoy them. I find it relaxing. I also enjoy finding colors and texture that work together, or figuring out a new pattern.

But then when knitting or weaving, if I start to think about how I got involved in them again it makes me sad and think about chemo again, and cancer and go back down that cancer road again. Which really sucks in some ways.

But I try to make myself forget all about it and push it out of my brain so I can enjoy myself doing the things I like. Cancer can really suck!

Recommendations vs. Medical Standards vs Patient Preferences

How often do you get your teeth cleaned? Every six months, just like the ADA reccomends of course. Unless you have bad teeth like me and go every three months (and I hate having my teeth cleaned). There are guidelines that tell us all sorts of things - get the oil changed on your car, get a flu shot, get a colonoscopy, and get a mammogram.

We usually follow these guidelines because they give us structure and a sense of how often we need to do these things. We listen to them because they are all in the 'preventive' category - they help make us more likely to live longer and healthier. We may not understand all the reasons why but we obey like lemmings, until they change and we get confused if we don't understand why.

But what if 'those people' who make these decisions about what to do when took into account what the patients preferred?

In 2006, the US Preventive Services Task Force (aka 'Them') issued a statement that women over 50 should get mammograms every two years, unless their medical history dictated otherwise, instead of every year. And nobody thought to ask the patients what they wanted.

Until a recent study announced at the annual meeting of the  Radiological Society of North America), which stated that 70% of women prefer annual mammograms. The reasons for concern over annual mammograms is for potential harms - false positives, cancers that would never become problematic, etc. The women asked were not as concerned about false positives or other harms than expected. This percentage could also be residual from women who were just used to annual mammograms and didn't understand why this would change.

If medicine is about the patient, and not about guidelines, insurance companies, and doctors, more change needs to happen. Personally I think if standards are changed, patient education needs to happen.

After a mammogram, the patient should be given written information on why they do not need to come back for two years and this is  why - what are the dangers, aka potential harms. Same thing after a colonoscopy or flu shot, etc. The mechanic who does an oil change puts a sticker on your car window to remind you when to come back. That is the only way to involve the patients and educate them as to why the change is happening.

The Young Adult Ignored Cancer Patients

This is one of my pet peeves. Children with cancer have their mature, sane parents advocating for them. Adults with cancer can advocate for themselves.

The young adults - 15 to 30s - often don't find the same support or resources. First they are still trying to figure out who they are and what they will do with their life. Second, they are learning to be independent and should be focusing on their education and careers, not going to chemotherapy. There is hope now that online resources can help fill the gaps for the patients and maybe for the doctors as well.

"In addition, they will probably go on to live long lives and the harsh realities of their cancer treatment can leave them fundamentally changed forever. Issues such as infertility, cardiac damage, or even damaged blood vessels from infusions can further complicate their lives forever.

Teen and young adult cancer patients may live a long time, so it's "important to pay more attention to the quality of their survival -- and not just to their survival," Grundy says.
In other words, long-term side effects from their treatments, such as infertility, need to be avoided if possible or, when unavoidable, must be managed. A weaker heart caused by chemotherapy is not the same for an elderly adult who has only a decade left to live as it might be for someone with decades to go.

According to Grundy, the inspiration for singling out this demographic for special care can be found in a graph of US data from the 1980s and 1990s, showing improvement in survival among different age groups."

All age groups show improvement in cancer survival rates between 1975 and 1997 except young adults - where the rates were lesser or even decreased, for 30-34 year olds.

""In children and older adults, there had been substantial improvement in survival, but where the least amount of improvement had occurred was in this gap between ages 15 and 39," said Grundy, who is also an expert in pediatric, adolescent and young adult oncology with the Canadian Partnership Against Cancer.

Why worse improvement in survival for those patients?

"First of all, they get different cancers [usually] than either older or younger patients," he said. And even when teen and young adult patients get more familiar cancers, like breast cancer, it's usually in a more aggressive form.

There's also "a knowledge gap," Grundy said. "Most clinical trials are either in children, or they're in adults."

Clinical studies, which test medications for safety, dosage and effectiveness, have shown that children can tolerate more intense doses of chemotherapy than adults, he explained. Since people older than 40 are 98% of all adult cancer patients, they make up the overwhelming majority of adult clinical trials.

This means oncologists may be unsure what dose to give a teen or young adult, Grundy says."

In the meantime, it is important for patients to find the support to help them get through cancer. I learned this at my first diagnosis at age 19, when there was no internet or other cancer patients to talk to. By my second diagnosis at 45 I dove in social media to find other cancer people like me.

My points here are for young adult cancer patients:

• You are not alone. Go to social media and find other people who are coping. In addition to 
• Your doctors may not be used to cancer patients your age so speak up, ask questions, ask about side effects.
• Draft a friend, spouse, family member to be your cancer buddy to take with you to doctor appointments to help you digest what you learn at each appointment. 
• Take things one step at a time. Educate yourself in stages. Don't worry about radiation until you get through chemotherapy. Don't worry about chemotherapy until get through surgery.

And if you have cancer and need a shoulder to lean on, try me. Leave me a message with contact info or find me on Facebook. 

In addition to all the social media resources in the article, my favorite one is Stupidcancer.org. 

San Antonio Breast Cancer Symposium

I have found there are two key conferences to follow to keep up with the latest cancer news annually. First of all, each June there is the annual ASCO (American Society of Clinical Oncologists) conference held around the country. As oncologists come together and the outcome produces a slew of new research news for all types of cancer translated into normal English.

Second, is the annual San Antonio Breast Cancer Symposium held in early/mid-December each year in San Antonio TX. That was just held and so much news was just released. There was so much new news that you should go read it all yourself if you want to stay up on the latest.

As with any professional conference, this is when a group of professionals who are scattered across the country, and the rest of the world, get together and find out about new research, get ideas for more research, and compare notes. The benefit to us cancer people is huuuuggggge.

So go read.

Screening Recommendations Based on Doctor Personal Experiences

Recently in JAMA, "...a research letter... explores how social interactions with friends, family and colleagues who have been diagnosed with breast cancer may affect a physician’s recommendations to patients."

What it found was that a doctor's personal experiences impact what they recommend for their patients. They did not necessarily follow the current guidelines. 

"Physicians familiar with someone with a poor prognosis who was not diagnosed via screening were much more likely to recommend routine checks for women between 40 and 44 years old and those over 75."

“Describing a woman whose breast cancer was not diagnosed by screening mammogram and who had a poor prognosis was associated with increased odds of recommending routine screening to patients within the designated younger and older age groups for which guidelines no longer support routine, universal screening,” Pollack et al. wrote." 

In my personal experience, my rheumatologist has been very hesitant to prescribe a biologic, such as Humira or Enbrel, for my rheumatoid arthritis. It is standard not to prescribe them to anyone who has been diagnosed with any cancer in the past five years because there is a TNF (Tumor Necrosing Factor) in them. 

Although I am more than ten years out from breast cancer and over 30 years out from thyroid cancer that translates to two cancer diagnoses before the age of 50. So she has been very hesitant. She even has conferred with my oncologist on this. Finally she has prescribed me Orencia which I have just started.

And the truth came out. At a recent appointment she told me that she had a patient who had had cancer and was over five years out from her diagnosis. My rheumatologist put her on a biologic for her RA and then she had a cancer recurrence. Who knows if the two were connected but that has had an impact on my rheumatologist. And she doesn't want to have this happen to any more of her patients.

“Our results suggest that helping clinicians reflect on how their experiences influence their current screening patterns may be an important approach to improve adherence to revised breast cancer screening guidelines.”

From a patient's point of view, I want impartial treatment for all my ailments. But there is so my crossover and overlap between them that discussions are often required. Due to my medical history, I have 'received' more screenings (a/k/a medical misadventures) than anyone else I know. I want the doctors to bend the guidelines to help me as best as possible.

Aggressive Breast Cancer In Younger Women

Younger women with breast cancer always seem to (my tiny non-medical mind) be either very late stage and/or aggressive and require more aggressive treatment. And some new research may explain why.

"Researchers at the University of Southampton in the United Kingdom found that women aged 15–39 who had early-onset breast cancer possessed specific gene variations that were associated with increased disease progression.

Lead study author Dr. William Tapper — from the Faculty of Medicine at the University of Southampton — and team say that their results not only shed light on why younger women with breast cancer have lower survival rates, but they could also offer new treatment targets for the disease."
This news seems to be leading to a real breakthrough. I have always found it interesting that young women were diagnosed with late stage breast cancer and required aggressive treatment. Yes you can argue that under 40 they are unlikely to receive regular mammograms so their disease was more likely to be caught at a later stage. But it seems to happen too frequently to be chance.

Now a gene variation has been found that could be the root of this.

"Among younger women diagnosed with early-onset breast cancer, it was found that two single nucleotide polymorphisms (SNPs) in the ADAMTSL1 gene were associated with greater risk of disease progression.

SNPs are variations in a DNA sequence that can affect how a gene functions, and this plays a role in disease.

The researchers say that this finding "suggests that unique disease mechanisms may influence survival in younger women and provide some biological insight into why younger-onset breast cancer has a worse prognosis."

What is more, Dr. Tapper and team say that the results could pave the way to new diagnostic and treatment strategies for young women diagnosed with early-onset breast cancer.

"Our findings increase our understanding of the genes and pathways that are involved in breast cancer prognosis, and may provide new targets for the development of novel therapies." - Dr. William Tapper

"In the short- to medium-term," continues Dr. Tapper, "this genetic factor may be used to improve prognostic models."

"In the long-term," he adds, "when more is known about the mechanism underlying this association and its relationship with treatment response, it may have an influence on approaches to the most effective breast cancer treatments."

So this is a real breakthrough. It could explain why some younger women have a more aggressive cancer, lead to better treatment for those with this variation, and lead to real changes in the future for all women with breast cancer.