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.

Time Sense With Cancer

I love xkcd.com

Feel Like I'm Back Twenty Steps

Finally I am feeling better and my post surgery recovery seems almost complete. The signs are there because I actually felt able to bring in the empty trash barrels and recycling bins (put everything in the big barrel and wheel it down the driveway). This is the first time since early October I have felt up to that. My husband even noticed.

I was all set to go to the gym this week for the first time in months but I woke up Monday with a temperature (101.5) and thought I had the flu. It wasn't the flu. It wasn't an ear infection. It was just your basic run of the mill cold. It set me back - I postponed everything from this week to next week and am still dragging around some.

However, I do now feel better but feel horribly out of shape. I lost weight after sitting around for a couple of months and now have a fatter gut. I get tired easily - probably because:
I'm out of shape
I'm recovering from surgery
I'm out of shape
I'm getting over a cold
I'm out of shape
I've sat on my butt for more than 10 weeks
I'm out of shape

But now my goal is to work on getting back in shape. I really need to.

When I was diagnosed with RA and fibromyalgia, I was very pleased at the fact that I had been working out regularly and was in relatively good shape and was better off than many others when diagnosed. Now I feel twenty steps back from where I was. I am not in shape now. It will be ten times harder to get back in shape than without RA and fibromyalgia.

So Monday I go to PT for the second to last time. Tuesday I go to the gym for the first time in 2.5 months. Then with any luck, I will be back to regular gym visits and work on slowly getting back in shape. The key word is 'slowly' but I'll work on getting back those 20 steps.....

Clinical Trial Exclusions

A recent SEER report looked at the incidence of  previous cancer diagnoses in newly diagnosed patients. An average of 18% of newly diagnosed cancer patients have previously been diagnosed with cancer. (25% of  patients over the age of 65 and 11% of those under 65.)  All these people will also probably exempted from any clinical trials for their new cancer because of their previous cancer.

"The investigators concluded: “A substantial proportion of patients diagnosed with incident cancer in the United States have survived a prior cancer. These patients may be excluded from clinical trials and underrepresented in observational research, and little is known about their treatment and survivorship needs. Understanding the nature and impact of prior cancer is critical to improving clinical trial accrual and generalizability, disease outcomes, and patient experience.”"
I am in this group with two cancers before the age of 50. I have never participated in a clinical trial. Why? Because my previous cancer always exempts me.

While I understand that clinical trials try to keep their participants as homogeneous as possible to prove product safety. However, the problem is it excludes a lot of people. Why should my medical history bar me from potentially benefiting from a clinical trial medication? And why can't I help future medical care by participating in a clinical trial? And its not just me, its the other 18% of the population which already has had cancer and has been diagnosed with another one.

I just took a peek at a few trials over on clinicaltrials.gov and easily found some with exclusions that include:

• Prior cancer diagnosis or chemotherapy treatment.
• Active autoimmune disorder.

Here I would not be accepted because of my two cancer diagnoses, chemotherapy, and active RA. (This can make me feel like no one loves me.... and I could get a complex here.)

I think it is time that clinical trails reflect the population - we are aging, we have medical histories, 18% of us have lived through cancer. 18% of clinical trials should include patients with a history of cancer. We live through cancer but we can't participate. Not fair to us nor to future patients who might benefit from our medical histories.

Tumor Evolution

It turns out that tumors do evolve. And the result of the evolution is that sometimes the cancer treatment stops working.

"A new study by researchers at Huntsman Cancer Institute (HCI) at the University of Utah observed how breast cancer tumors evolve over time and demonstrated how changes within tumors may contribute to the process by which cancers no longer respond to treatment. Further, the research identifies that some of these changes may be shared across certain treatment-resistant breast cancers."

The problem in examining tumors is getting samples because that is that can be invasive. You can't really say to a woman with breast cancer 'be sure to stop by for your yearly tumor biopsy'. They really do not want to keep the tumor around if they don't have to. So they had to be unique, which also meant a very small study size:

"For this study, Werner and her collaborators were able to trace the timeline of treatment of four breast cancer patients, over the course of between two to fifteen years for the patients analyzed. In a unique collaboration between several researchers and medical oncologists, samples of cancerous tissues were collected from breast cancer patients during their regular course of treatment. The tissue samples were then sequenced to study how the samples changed over time and how the tumors responded to each treatment. Using these data, the researchers were able to assess how changes in the tumor coincided with when the patient's cancer stopped responding to treatment."

Four patients is a very small study. However what can be learned from this study can lead to new research. Due to the invasiveness of tumor access, I can't see how tumor access is going to ever be much easier. With most patients, tumors are removed as soon as possible. I guess if there is a recurrence, presto you get a new tumor to biopsy - but if its not the same tumor does it count? Or sometimes tumors are not removed right away because chemo is used to shrink them..... But what do I know? I am a mere patient who is rambling on here.

"The ultimate goal for the researchers is to understand what is happening in a patient's tumor in as close to real time as possible, to predict what will happen next, and to adjust treatment accordingly.

Two new clinical trials set to start early next year at HCI and City of Hope will build on this research. Werner says "ultimately we want to actually predict what is really going to work best for your tumor during the course of your disease. While we're not ready to apply this to standard patient treatment now, with this work we are one step closer to doing that."

So if this tiny study is going to result in more research, I am all for it. You have to start some where and I find it fascinating that this area is one to be explored. I never really considered tumor evolution but if you think about it, tumors must acquire new characteristics as they grow in size. I'm ready to learn more and wait for more results.

Friendships

This has come up time and again but for some reason I have seen it more often in my Facebook feed in the last few weeks. Friendships - they come and go. We make friends and we lose friends. Some friends we lose when we change and move on - maybe we used to work together, live next door to each other, go to school together, or some other commonality which held us together but doesn't any more.

Other times we opt to lose our friends when they appear to have changed. The point is from your perception you don't really want them as a friend any more. For instance, if you had a friend and they did something unethical/illegal wouldn't you be uncomfortable with their friendship? I don't know anyone who did anything illegal but can think of a several instances where two different friends made me very uncomfortable with their ethical choices.

Or what if you think your friend is developing emotional issues and they refuse to take care of themselves, to take any advice on it, and do not consider themselves to have any emotional problems. An example is that if you had a friend who became a hoarder, what would you do? What can you do? Hoarding is characteristic which is telling us something more is going on with them emotionally. They need help but if they are in denial over their situation, what can you do?

What if you think your friend is just using you? I had a friend and, I kid you not, for a couple of years she used to call me to see how the traffic was before she drove home from work. Her rationale was that I was home and could look it up on the TV for her. I finally resorted to telling her, for several months, that I have no idea, the TV isn't on, before she finally figured this out. Um, you have the internet don't you?

Then there are the people who are chronically late, for everything. All the time. They can't get anywhere on time. Being late happens to everyone - a flat tire, etc - but not every single time. And late by an hour or more. It is incredibly rude to be late. It says 'I am way more important than anyone else so everyone can just wait for me'. Did you ever try to get a group of people together for lunch at 12 and have one call at 5 til to say they just woke up and will be there in an hour? (I just wonder how people like that keep their jobs because if they can't do anything on time, can they ever meet a work deadline?)

Finally, another part of friendships is what if you have changed? That is certainly the case with me. I have changed significantly over the last decade. My health has been greatly altered and I no longer have the same coping skills I did before. I don't have the patience or the physical ability to wait for people. Nor can I cope with anyone else's emotional issues. I have plenty of my own these days. It upsets me that I don't have the physical and emotional bandwidth I used to and I work on coping with that.

I also realize that I can no longer do a lot of the things I used to do - like hike, go out to dinner, stay up late, etc - so the friends I used to see at those events I no longer do see. But I would be happy to see them if things worked out and I was physically able to attend.

As my life has changed my friends have changed. It can be sad to lose friends but sometimes its necessary to lose them.

Breast Cancer the Socially Acceptable Cancer

A breast cancer diagnosis is no fun. Actually any cancer diagnosis is no fun. We all know that. But maybe because of all the 'awareness', it is now more socially acceptable than other forms of cancer. Isn't that just weird? I think so.

Meanwhile, a woman in New Zealand was diagnosed with stage IV lung cancer and she wonders if breast cancer would be better because of the stigma surrounding smoking and lung cancer.

I think lung cancer is the only cancer which is regarded as 'self inflicted'.  Face it, as normal human beings we associate lung cancer with smoking. But not all smokers get lung cancer and not all lung cancer patients were smokers. I think we look at lung cancer patients, even us former smokers, as people who have done it to themselves. They smoked and they got the lung cancer they 'deserved'.

The problem then is with the original cancer stigma, all cancer patients can feel isolated and alone. Which is no fun. But lung cancer with its added stigma makes it even worse. How to find the best support when you don't have the 'in' cancer?

First of all breast cancer patients seem to be all around us but lung cancer patients are fewer and harder to find. Then its got this additional stigma. I think all cancers should be equally treated with the same resources available for all.

That Lingering Risk Thingy

I can't say how much this just aggravates me. You get breast cancer. You get treatment and then they say we will see you once a year. You are NED (No Evidence Of Disease) for now. If you are hormone receptor positive (ER+/PR+) you get to take a little pill (tamoxifen or aromatase inhibitors) that should help you stay that way.

But there is always that lingering risk of recurrence. That's the one thing none of us want. A new study which looked at data from 88 different clinical trials over more than 20 years found that the risk of recurrence lingers after the AIs are ended.

"Researchers from the Early Breast Cancer Trialists' Collaborative Group analyzed data from 88 clinical trials involving 62,923 women with ER-positive breast cancer. The patients all received endocrine therapy for five years and were free of cancer when they stopped therapy.

Over the next 15 years, however, a steady number of these women saw their cancer spread throughout the body, as late as 20 years after the initial diagnosis.

"Even though these women remained free of recurrence in the first five years, the risk of having their cancer recur elsewhere (for example in the bone, liver or lung) from years five to 20 remained constant," says senior study author Daniel F. Hayes, M.D., Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Comprehensive Cancer Center.

The risk of recurrence was directly tied to the original cancer's size and characteristics, and to the number of lymph nodes that were cancerous.

Among patients who were recurrence-free when they stopped taking endocrine therapy after five years, the highest risk of recurrence was for those with originally large tumors and cancer that had spread to four or more lymph nodes. These women had a 40 percent risk of a distant cancer recurrence over the next 15 years. Women with small, low-grade cancers and no spread to the lymph nodes had a much lower 10 percent risk of cancer spreading distantly during the following 15 years."

Isn't this comforting? On my part, I had a relatively small, moderately aggressive, and one positive lymph node. So that must put me in between the 10 and 40% risk of recurrence. Also, I am on the schedule for AIs for up to ten years. Maybe I will ask if I can continue them? But being on AIs only lowers your risk of recurrence, does not remove your risk of recurrence.

However, I do put a lot of credibility into this study as it reanalyzed data from so many studies. This is the kind of research that is the 'more research that was needed'. This just aggravates me that in this day and age, we still do not have a cure.

There goes my warm fuzzy feeling for the day. And you wonder why I deal with stress, depression, and anxiety.

Personalizing Personalized Medicine

What is personalization? Its making things for the individual. This is seen all the time online. If you visit Amazon's website and search for toothpicks, you will start seeing ads for toothpicks popping up all the time. Until you search for something else.... Amazon's site is responding to your needs by reminding you about your recent search - meeting your needs.

Personalizing personalized medicine means not doing the same thing over and over again, and taking into account patient's individual needs. However, we talk about personalized medicine and then discuss starting mammogram screening for all women at age 40. Where is the personalized part of that? Its just changing the requirement for insurance companies. And no mention of who pays for the additional screenings.

Take this opinion for example, from Dr Montijo on Clinical Advisor:

"I am often concerned about articles summarizing screening mammography data. Without fail, organizations that materially benefit most from performing mammography conclude and advocate more frequent and earlier screening mammography. Organizations composed of primary care or with minimal material benefit conclude that a more conservative screening program and more personalization, such as shared decision making, has the greatest net benefit. The cost alone, from the most aggressive screening design to the most conservative design, is in the billions of dollars. No tradeoff analysis of alternative uses of such cost is entertained."

Again, just because we can, doesn't mean we should all the time.

"Mammography started in the early 1950s with a study from HIP of New York, among others. The use of screening mammography increased precipitously during the ensuing decades typical of new technology, often for assumed or wished for benefits. A major industry was born. As happens with most new technologies, finding the optimal use or non-use takes time but almost always perseveres past the optimal benefit point or in some cases full retirement."

I am not saying mammography does not have its benefits. It does. Some women should start screenings early. Maybe in their 20s - I had a benign lump at 23 and have had annual mammograms since. My breast cancer was found at age 45. And another benign lump appeared at age 46. I am someone who needed mammograms starting young. But this does not apply to everyone. 

In my opinion, anyone who is BRCA positive or has a family history of breast cancer should have annual screenings start at age 25 even. That should not be a discussion, but should be a standard for those women. I am sure there are other cases like this where mammograms should start early.

This is a basic idea to start a personalization discussion with an individual patient. But a global requirement for everyone doesn't help. Mammograms have a financial cost but also the cost of missed time at work for the patient to go to the appointment as well as emotional stress for the patient.

We need much more personalization if we are to make any progress in this area.

I'm Tired

I'm watching the new season of Top Chef so I can say I got myself in the weeds for rest this week. I think the term of being in the weeds is a restaurant kitchen term. It started when I had a two day craft show last weekend, followed by houseguests all week. They were my cousins and I was glad to see them. But I didn't get enough rest.

Today I'm staying in bed and resting. For tomorrow's craft show and a friend's party. And making brownies for the party.

But in the meantime, I am lying in bed as long as I can today.

Waiting for Cancer Research

After 12 years (how the heck did that happen?) of breast cancer coping, I have actually seen some cancer research go from new or in clinical trials to become standard of care. This includes length of hormonal treatment for breast cancer patients. But it does not include many, many others.

Some cancer 'breakthroughs' are still in trials, or have vanished because they didn't work. They provide us cancer people with instant elation at the possibilities it hints at, followed by deflation as we realize it is years or decades in the future.

An example of this is this news that at UVA they are working to find a way to stop triple negative breast cancer, which is aggressive and harder to treat than other types of breast cancer. Here's the elation:

"So-called “triple-negative” breast cancer is a particularly aggressive and difficult-to-treat form. It accounts for only about 10 percent of breast cancer cases, but is responsible for about 25 percent of breast cancer fatalities.

Triple-negative breast cancer earns its name because, unlike other breast cancer subtypes, its cells test negative for estrogen and progesterone receptors, as well as for a gene called HER2. Therefore, it cannot respond to therapies that inhibit cancer-growing signals that come from estrogen, progesterone and HER2. The only treatment options for triple-negative breast cancer are surgery, radiation therapy and chemotherapy, each of which cause difficult side effects and rarely lead to remission.

Triple-negative breast cancer is also highly variable from patient to patient and even among tumor cells of a single patient, making it difficult to understand and treat. Other breast cancer subtypes are homogeneous, more predictable and treatable.

University of Virginia researchers are working to study this variability and find an end-around method to stop triple-negative breast cancer, by seeking out unknown or little-understood routes toward shutting down uncoordinated growth."

Followed by the deflation:

“We’re still early in this investigation, but it may be a step in the right direction for getting a handle on ways to target this very difficult to treat breast cancer subtype.”

So how many years do we have to wait for this 'step in the right direction' to lead to something that is routinely available?  Will my friends with triple negative still be here to benefit from it or will it be here too late for them? 

Post Surgery Recovery

Its exactly 8 weeks and one day since my knee surgery that made me rest more for longer than I have had to in many years. I was told 4-5 months of rehab for my meniscus repair. Now I am at the end of month two and realize I still have many more weeks of rehab in front of me.

The first month I was not allowed to drive so I sat around and gained back the ten pounds I had just lost. I got a lot of reading and knitting done and binge watched way too much TV. The cats liked me to be home and sit around a lot so they got attention. I had to postpone many doctor appointments. The only thing I did get to do was go to physical therapy twice a week.

In the second month, I was allowed to drive and do more things. I started going out of the house and going to all the postponed doctor appointments as well as the grocery store, library, etc, as well as PT. This meant as I resumed my normal activities I hit the exhaustion plateau more frequently. I got out of shape (and fat) while sitting around for a month.

In addition, as I am doing more, I am making my knee hurt. Every PT session starts with ten minutes on the bike to get started. Yesterday, at minute 6 my knee started hurting so I had to move on to other tortures prematurely. The therapists told me its because I have been exerting myself that my knee is telling me that its not quite ready for everything I am putting it through quite yet.

At the beginning of the third month, I am seeing the end of PT. Three more visits to go before I return to the gym. I think the only reason I am ending PT so soon is because the gym I go to (for dilapidated people) is run by physical therapists and I will revise my workout with one of them before any exercise.

But at least I can look forward to going to the gym. The gym is where I spent nearly two hours three days a week. I chat with lots of different people there as well as get in a good workout. Its a big event for me - both the exercise and the socializing. I can't wait.

I just hope my knee is up to it. I realize that I can't just hop back into an hour of cardio followed by 45 minutes or more of stretching, weights, and resistance exercises. But I am getting frustrated with the amount of effort it takes me to do much along with the length of recovery required afterwards. Also, its the wrong season to sit around with an ice pack on my knee....

I am recovering. If I have come this far in two months, I should be able to get back in shape in another two.... I hope?