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. 

Wait A Minute, Back Up Please!

A new study shows "How a Chemo Drug Can Help Cancer Spread from the Breast to the Lungs". Really? How does that work? Why are they telling me now instead of before chemo?

"Researchers at The Ohio State University studied the cascade of events that lead to metastatic cancer and found clues to why it happens, opening up the possibility of one day interfering with the medication's downsides while preserving its cancer-fighting properties in breast tissue.

The front-line chemotherapy drug paclitaxel sets off a variety of molecular-level changes that allow breast cancer cells to escape from the tumor. At the same time, it creates an environment in the lung that is more hospitable to the cancer cells, facilitating the spread of the disease, the researchers found in a mouse model of breast cancer."

I know chemo drugs are strong which is why they are used to kill cancer cells. But this is just really bad. Why? Because the 'other name for paclitaxel is Taxol. Which I had. Thanks for that push back on the cancer roller coaster. 

And then there is this little disclaimer at the bottom that's supposed to make us feel better.

"She said it's important to recognize that the cancer cells in the study's mouse model are very aggressive and that it would be interesting to test whether paclitaxel also enhances the escape of cancer cells at earlier stages in cancer progression."

Another 'Oops, We Forgot To Tell You This'

Another little bitty oopsie. Many women after a mastectomy for breast cancer get implants to make them more even again. Then there are the hundreds of thousands of women who seek implants to enhance their bodies. And then comes the oopsie.

There is a rare cancer which is caused by implants.

"The American Society of Plastic Surgeons says around 550,000 women last year received breast implants, but the FDA published a report this year linking a rare cancer to the implants.

So far, there have been 359 reported cases globally, including nine deaths.

The risk is low, but one in 30,000 women with implants could develop it,..."

Nice! Oops!

I am sure there are other potential side effects from breast implants but cancer isn't a fun one. Especially if you got implants after breast cancer - part of the cure caused a new cancer?

However the biggest part of the cure for the new cancer is to remove the implants. So have another surgery to fix the last surgery

Then there is a woman in Montana whose insurance company won't pay for the removal of her implants even though they caused her cancer. The company claims they are cosmetic - which they were originally - so they won't cover their removal. 

This woman, Kimra Rogers, is fighting her insurance company to cover the removal of her implants. And she is also fighting to raise awareness for this type of cancer because she was told that the implants were 100% safe.

Oops, again. 

While we might dislike the long list of potential side effects that accompany everything but this is one case where they made a tiny oops.

The Truth, The Whole Truth, Nothing But The Truth

The truth about cancer treatment is very complicated. The treatment options are very deep, strong, and harsh even. They are just drastic. Because they are so drastic, they can very well cause a lot of post treatment effects - i.e., side effects. The information on side effects is not a list, but a mountain.

Yes we want the truth. Oncologists I think waffle on how much information to provide to their patients about their treatment options when faced with their treatment options. I can tell you its a lot of information to take in and absorb - and probably  not everyone is ready for that. And our doctors are unsure how much information each patient can handle at that time.

Our oncologists can give us all sorts of great information - recurrence rates, risk reduction (what the heck is that?), side effects (only a few), and how you are going to be a better and newer more normal person after all. and then, after treatment, you start to feel crappy. You are not the same. You are tired. You might be depressed even. But why? Because you didn't get the whole truth before.

At each oncologist appointment, we leave the room with a brain overflowing with information and we try to grasp everything that we are told. We are probably clutching a few brochures covering our treatment and/or diagnosis.

Did we remember everything? Probably not. Because it was too much information all at once. Even if we bring a helper to make sure all our questions are asked and their answers are written down, we still may not have gotten it all.

But as patients, we need the truth, the whole truth, and nothing but the truth.

"Cancer treatment can be life-saving. It can also be life-changing—and not in that wonderful, fluffy, “positive thinking” way that extols the virtues of enduring hardship. Newly diagnosed patients need to be given the facts, fairly presented, so that they are not blindsided if, instead of getting better and better after their treatments, they slowly get worse and worse. This can be considered a fair trade-off for the chance to live longer…but, like the chance of getting lymphedema or a secondary cancer, it needs to be a risk you take with your eyes wide open."

Just tell us like it is please.

Side Effects Vs. Costs

This morning an email on the discontinuation of a certain drug which the article says is a good thing because it will save billions of dollars. The drug in question is TKI and is used to treat CML. It works well at putting people in remission but comes with a high financial cost, $147,000 per year and causes many side effects.

This made me think. Which is more important - financial cost or side effects?

I am torn on this one. A drug that costs $147,000 per year is phenomenally expensive. If it was a branded drug on my insurance I would be charged probably 40% of that cost. Could I afford that? Even without pulling out a calculator that would be somewhere north of $50,000 each year. I do not have that kind of money.

I have problems with my high cost medications. I am on several that each cost me over $1000/year - which to me is a lot.

Then there is the side effect issue. I am on medications for the side effects of some of my other medications. I also have to have regular blood work and chest x-rays done to monitor for other side effects. (Sometimes I think I might be better off if I took no medications at all.)

But this is a bit of a conundrum - side effects or costs.

Those Nasty Complications

I often wonder in cancer treatment, which is worse - treatment or complications? I think complications win that one. To me complications mean more doctor visits, more drugs, more expense, more whininess, and less happy results.

In recent years, we have had the whats-her-name effect (this is what happens when you blog too early in the day) where women are getting bilateral and unilateral mastectomies at higher rates than in the past. There is no real proof that mastectomies are better than lumpectomies with radiation for early stage breast cancer but many women opt for them anyway.

But there is a problem. New research (because we always need new research) shows that more often mastectomies are often accompanied by side effects and complications.

"Researchers identified 105,211 women with early breast cancer diagnosed between 2000 and 2011 and identified treatment complications within 24 months of diagnosis and compared complications by treatment. ...

"Lumpectomy plus whole breast irradiation treatment was the most commonly used treatment. Mastectomy plus reconstruction was associated with nearly twice the complication risk of lumpectomy plus whole breast irradiation treatment (54.3% vs. 29.6% complication risk among younger women with private insurance and 66.1% vs. 37.6% complication risk among older women with Medicare) and was also associated with higher adjusted total cost (an average $22,481 more for younger women; an average $1,748 greater for older women with Medicare) and complication-related cost (an average $9,017 greater for the younger cohort; $2,092 greater for the Medicare cohort). Brachytherapy had modestly higher total cost and complications than whole breast irradiation treatment. Lumpectomy alone entailed lower cost and complications in the Medicare cohort only."

And what do side effects and complications mean? More doctor appointments, more treatment, and more costs. I don't know about you but honestly, in addition to better health, I am all for fewer doctor appointments, less treatment, and less cost.

If I could go to one doctor once a year and get treated for everything all at once, I would be much happier. But since that isn't going to happen, I still want the fewest visits possible. 

If I am given a choice of two treatment possibilities. One has less invasive surgery but would require additional treatment and the other has more invasive surgery but no additional treatment, but has a higher risk of more complications? I think I would always go for the less invasive ones that requires more treatment.

More complicated is never better.

(Whats-her-name is Angelina Jolie. I think I finally woke up.)

Why Bother?

For some reason I have had a similar conversation with different women on the same topic: why take tamoxifen or aromatase inhibitors after initial breast cancer treatment. Aromatase inhibitors are Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole)

The conversations all boil down to:

• What if I get side effects? They have heard they are awful and could cause them some real problems. But if you don't even try them how will you know if you will experience the side effects?
• What exactly do they do? They don't really understand that they would reduce their recurrence risk by being on them
• Why do I have to be on them so long? It used to be five years and now new research has come out to say ten years is better. And more research is going on that may lead to even longer treatment periods

[As I write this, there is a commercial on TV for Botox for migraines. Botox is botulism, which is a very nasty germ...]

I have had friends who do the same thing with their medications.They over think them and won't take them because they have heard that the side effects might be bad. Or the withdrawal from the drug could be bad. 

You won't know if you might get side effects if you don't try the medication. And you won't get the potential benefit from the medication if you don't take it. How is your doctor supposed to treat you if you won't even try their recommended medication?

Chemo Without Losing Your Hair!?!?

I had heard about these when I was in chemo - cooling caps to prevent hair loss. They were knew and being tested and not really available. Now new research shows that wearing a cooling cap seems to prevent hair loss for most patients during chemo for breast cancer. Sounds easy doesn't it? No pills, no real side effects. I could wear a hat during chemo easy, peasy.

I think (based on what I have heard and am not sure I remember all the details correctly) that patients wear a cooling cap during their chemo session and then keep it on for another 45 minutes or so. Small studies have shown that women who wear the cooling cap, lose less or very little hair than the women who don't wear a cooling cap.

Currently there is one cooling cap approved for use in the US and another under review by the FDA. Sounds cool, literally. The way they work is that they cool the scalp to around 37F and slow down the cell division process during chemo:

"Researchers don't know exactly how the cooling caps work. One theory is that cooling constricts the blood vessels in the scalp, slowing the circulation and thereby reducing the amount of toxins to which hair follicles are exposed.

Or it may be that cold slows the growth of hair follicles, making them less susceptible to damage from chemotherapy, which targets rapidly dividing cells.

Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society, says it could be that "by slowing down those cells whatever mechanism it may be — either starving their blood flow or slowing them down straightforwardly — the net effect is beneficial, causing hair not to fall out.""

But of course there is a small snag with this:

"While chilling the scalp may seem to carry few risks, Lichtenfeld says there is a theoretical risk that inhibiting the effect of chemotherapy in the scalp could allow metastases to take hold there."

So hmmm.... Maybe not so much.

Okay, so I like the idea that you can go through chemo for breast cancer and not lose your hair. Losing your hair is so emotionally damaging. Believe me I hated losing my hair. There are no pictures of me bald - I made sure of that. I still don't think I have emotionally adapted to it still.

But if there is the potential that you could get mets to your head as a result? I am not sure I would be comfortable with that. I know people who have gotten mets in their skull so its not that out there. And they are so new that there is no long term research to show this.

So there is a downside. I would have to think about this seriously and look at more research before I would be comfortable with this.

Exercise, or Reducing AI's Side Effects

All of us 'lucky' people with hormone positive breast cancer, get the 'benefit' of being able to take hormone therapy or aromatase inhibitors (AIs) such as Femara, Aromasin, etc. These lovely little pills potentially reduce your risk of breast cancer recurrence (that most dreaded of all possibilities).

However these aforementioned lovely little pills cause nice side effects such as bone loss and joint pain. I have friends who had to discontinue AIs because of these side effects. They can be THAT bad.

So a new research study (because we always need more research) has come up with a cure for these issues: Exercise. Parts of me says this is just another reason they want us to exercise. But in this case apparently it really helped women in dealing with the side effects.

Guess what the suggested exercise is: 150 minutes a week of aerobic and resistance exercise. That is the same amount that is suggested for every one for every issue.

I do more than that each week. I do about 180 minutes of cardio and then another 120 minutes of resistance exercise. I have joint pain and osteopenia (the precursor to osteoporosis). I think I would be in horrible shape if I didn't exercise.

I guess this study results in the same message we get all the time: exercise.

More Breast Cancer Treatment Side Effects

What good is a treatment if it could kill you in the end? A new study (because we all need more research) shows that more than half of breast cancer patients have severe or very severe side effects after treatment, especially after chemotherapy.

"Overall, 45 percent of participants reported severe or very severe forms of at least one of these side effects. When women got chemotherapy, the odds of severe side effects were twice as high, though the side effects were just 30 percent more likely when chemo was paired with radiation.

“We did know that some of these side effects were associated with these treatments, but we did not know how severe or how common these side effects were,” said study co-author Dr. Allison Kurian, a researcher at Stanford University School of Medicine in California.

“I found it striking that nearly half of all women treated for early-stage breast cancer reported suffering toxicity that they considered severe or very severe,” Kurian added by email. “This emphasizes the prevalence and seriousness of the problem.”"

This is clearly in the category of 'I wish they had told us this before treatment'. I have always thought that breast cancer treatment was very harsh. Your chemo dose is estimated based on your weight. The chemicals they put in you are so toxic the nurses are gowned and gloved. Radiation causes the technician to leave the room while it is beamed into your body and your skin burns. Surgery cuts out chunks of your body parts with the goal of clean margins, not minimal deformation.

"...The results should encourage doctors to consider when patients treatment regimens might be to achieve the same survival benefit with side effects..."

I wish side effects would be considered just as important as the impact of the treatment. What good is a treatment that kills off potential cancer cells but destroys your heart at the same time? Or that radiation will kill off cancer cells but might also cause a new cancer that could kill you.

"“The treatments we have for cancer are very effective, but there is a growing recognition of the ‘collateral damage’ that can accompany these treatments,” said Dr. Shelley Hwang, a researcher at Duke University in Durham, North Carolina, who wasn’t involved in the study.

“Patients should recognize two things: first, that cancer treatments involve trade-offs; second, that some toxicities can be long-lasting,” Hwang added by email."

I'm sorry but cancer treatments should not involve trade-offs. Its not a good treatment if resulting toxicities could kill you. Sorry. I think we need new cancer treatments without 'collateral damage'. 

What I Wish I Had Known

As a breast cancer, or actually any kind of, patient, we often have complained about what I wish I had known before treatment, especially surgeries. I know I have whined blogged about it so many times myself that I can't even begin to list them all.

One big area of complaints is what I wish I knew about surgery before I had it. The lymphedema risk was sort of explained but it didn't sink in. Maybe my brain was preoccupied with 'my overwhelming second cancer diagnosis' so it just didn't register. Or maybe I just thought it would never happen to me, like any cancer diagnosis.

But I would like to make the case on the 'Angelina Jolie Effect' where many women are having prophylactic bilateral mammograms because they can. There definitely are instances where a prophylactic bilateral mastectomy is the best treatment option - especially BRCA positive or strong family histories, but not all.

Now breast cancer surgeons are pushing back on this saying that patients do not understand the full ramifications of this surgery. The doctors agree that women have the right to make the decisions about their body but they really want everyone to understand what it will really entail.

""It's a very difficult decision," ... "We think that any woman who wants to have a prophylactic mastectomy ought to be able to have a prophylactic mastectomy. However, we also believe that if more folks understood the statistics and understood the real facts, fewer people would be getting prophylactic mastectomy than currently are.""

See that's the kicker. Not everyone quite understands that impact of removing both breasts - both surgically and emotionally. Its not a in and out surgery. Its a long surgery, 10 hours even, and then can require numerous follow ups. And it may not look the way the patient expected. And cancer can still recur, even if less frequently.

So how do you make sure the patient understands? I really am not sure. Going back to my experiences with lymphedema, I had a separate appointment before surgery with a nurse on how to help prevent lymphedema immediately after surgery and in the long run. I was given printed materials and directed to on line resources. What else could they have done?

Even if they told me if you trip and fall, do not put out that arm to brace yourself or you will lymphedema. That is what happened to me. I could not have avoided that fall which started the lymphedema lifestyle for me unless I stayed inside all winter (I slipped on ice in our front walk on snowy day).

Last summer I took a fall and ended up fully tearing my ACL in my left knee. Because of my RA, I am not a good candidate for an ACL repair. First of all, the RA would probably leave me with a stiff knee which isn't much better than a less than supportive knee. Second of all, the ACL repair would make the knee replacement (that I really do need) less likely to work as well. It took two surgeons explaining this to me several times until I finally got it.

So what would it take to make sure patients understand what they are requesting? The multiple surgeries, the implants, the reconstruction, potential side effects, and more all would need to be detailed. Meanwhile the patient is sitting there thinking 'get it out of me NOW!'.

Its not easy. The patient is very stressed and coping with their diagnosis while simultaneously trying to figure out which treatment options they would have. I agree with the surgeons here that patients need to have a full understanding of the results of their surgery and that patients really need to do their part and pay attention.

Walking During Chemotherapy

So back when I was in chemo, and for many years before diagnosis, I used to go for a daily walk. That was when I was healthier (I only had two cancers, not RA and fibro). When I was healthy, I would walk between 4-6 miles each day. Many friends didn't like walking with me because they claimed I walked too far and too fast. My husband would call my walks 'death marches'.

But I digress. During treatment, I walked every day I could. I mean on days I had surgery I didn't always feel up to walking. During chemo, often my walks were shorter because I felt like crap (a technical term). My biggest side effect during chemo was constant nausea and inability to be in the same room as scallions. I did have some neuropathy but not too bad and my finger nails and toe nails took a beating.

Now there is a new study (because we always need more research) that shows that breast cancer patients who go for daily walks during chemo had fewer neuropathy problems than those who did not walk.

"The study, involving more than 300 cancer patients, was presented at the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago.

Investigators in the exercise study directly compared the neuropathic symptoms in non-exercisers to the pain among patients who took part in a specialized six-week walking routine with gentle, resistance-band training at home.

The exercisers reported significantly fewer symptoms of neuropathy – which includes shooting or burning pain, tingling, numbness, and sensitivity to cold – and the effects of exercise seemed to be most beneficial for older patients, said lead author Ian Kleckner, Ph.D., a biophysicist and research assistant professor in Wilmot's Cancer Control and Survivorship program."

So maybe I was on to something. The nurses and doctors all appreciated the fact I went for walks and encouraged me to keep walking. Currently oncologists and patients spend more time talking about walking during chemotherapy. A daily walk also provides the benefit of reducing the constipation that often accompanies chemo. 

"Kleckner, a longtime drug-free body builder and former college rugby player, said he's committed to understanding more deeply the benefits of exercise for cancer patients. "Exercise is like a sledgehammer because it affects so many biological and psycho-social pathways at the same time – brain circuitry, inflammation, our social interactions – whereas drugs usually have a specific target," he said. "Our next study is being designed to find out how exercise works, how the body reacts to exercise during cancer treatment, and how exercise affects the brain.""

So my advice is during chemo, go for a walk. In addition to helping with neuropathy, it can help reduce your stress. Actually I think my advice is as soon as you are diagnosed with breast cancer start going for a daily walk.

Side Effects

You get an ailment, maybe cancer, and they come up with all these drugs, surgeries, procedures and more to 'cure' you. Eventually you start to feel better and get to that 'new normal' crap they tell you about. And then something starts to not be right with your body and you go back to the doctor and find out your oh-so-wonderful cancer treatment has left you with a side effect that might kill you on its own.

I know people who this has happened to. My sister in law's sister was treated with radiation to her chest in her teens for Hodgkin's and ended up dying of breast cancer at 47. A woman at the gym, her daughter just had a very serious heart attack at the age of 53 as a result of her treatment for Hodgkin's as well. A friend has heart damage as the result of her breast cancer chemotherapy. And I can go on.

My rheumatologist is considering switching my treatment combination for my RA but is concerned about side effects that could potentially cause life long problems for me. I also need a yearly chest x-ray, which is standard procedure for those on one of my medications, to make sure I am not causing permanent damage to my lungs.

As medications get stronger to treat more and more ailments, their potential side effects can be deadly. One of the most important parts of clinical trials is balancing the potential side effects from a specific dose, with out killing the patient.

They cure you from one disease and end up killing you from something else as a result in the long run. Does this seem right? It does not to me. I am not very happy about this. But what options do I have?

There are people who say they cured themselves through some diet change, a secret potion found on an island in the South Pacific, or becoming a raw paleo vegan or something. None of those options appeal to me. I do my best to take care of me but I also try to live my life the way I want.

I do take my Western medicine and hope the side effects will not kill me in the long run. This is the part of the system that needs to be changed.

Nerve damage from cancer treatment

If cancer doesn't kill us, sometimes its treatment leaves us with many more problems. One of these is neuropathy. A new study was to be announced over the weekend at ASCO in San Francisco where several hundred women were studied after cancer treatment.

"At an average of six years after cancer diagnosis, 45 percent of them still had symptoms of nerve damage, such as loss of feeling in their hands and feet.

These symptoms were associated with much poorer physical functioning and difficulty doing daily tasks, such as cooking and shopping. The women with symptoms also had changes in their walking patterns and were nearly twice as likely to fall as those without such symptoms, the researchers discovered."
And the best part is:

"While there are no effective treatments for this side effect, rehabilitative exercise programs may preserve physical functioning and mobility in the presence of neuropathy to help prevent falls and resulting injuries..."

I love the part about new effective treatments. Maybe we need cancer treatments with fewer side effects.

Important but scary clinical trials

We always hear about these new lifesaving drugs that are discovered and going through clinical trials. The good part of clinical trials is that they help other patients who get their diagnosis later on. It is also supposed to help the current patient who has a late stage disease for which there is no cure.

There is a scary side to clinical trials for these late stage patients. Will the new drug kill them or cause horrible side effects?

As patients we hear about clinical trials and how new drugs are always coming out and if we go on clinical trials they will help future patients. 'You are doing something good as well as trying to save your life.'  That is the Rah-Rah-Take-One-For-The-Team attitude that pushes forth on the wave of clinical trials. You can do it! You are helping others!

But no one ever talks about the fact that the clinical trial drugs are very unproven, which are why they are in clinical trials, and not much is know about them. The official definition of a stage I clinical trial is:

"Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects."

So not much is know about its safety. Will it kill the patient? Will the side effects be horrible and weaken your body so you cannot handle other future medications?

I never really thought about this until I read this article, 'Breakthrough drugs are saving lives but wrenching souls', the other day.

Shorter radiation is better

Sometimes editing takes out all the important information. This took  a lot of digging to find out what the hell it was talking about.

I first came across this article which says higher dose shorter radiation is better that the traditional radiation given to breast cancer patients. This makes sense because the damage from radiation is cumulative meaning that it gets worse and worse after each treatment. Other side effects such as fatigue are also lessened from the shorter course of treatment.

Well that is nice to know but how much shorter is it? I couldn't tell but did go find the referenced article, Differences in the Acute Toxic Effects of Breast Radiotherapy by Fractionation Schedule: Comparative Analysis of Physician-Assessed and Patient-Reported Outcomes in a Large Multicenter Cohort, on JAMA Oncology. You got that?

How's this instead?

"Randomized trials have established that hypofractionated regimens of radiotherapy to the whole breast can provide long-term disease control that is equivalent to the excellent outcomes of more protracted conventional fractionation schedules in selected patients undergoing lumpectomy for breast cancer. Hypofractionation might also result in lower rates of late toxic effects than conventional fractionation. Although the American Society for Radiation Oncology has issued consensus guidelines to identify patients in whom hypofractionation is appropriate and endorsed consideration of hypofractionation in its Choosing Wisely campaign, uptake of hypofractionated regimens has demonstrated considerable variability worldwide and has been relatively slow within the United States."

Okay, what if I tell you this:

"Traditionally, women undergoing lumpectomy for breast cancer were treated with 5-6 weeks of daily radiation after surgery. "Hypofractionated" regimens are shorter courses of radiation, in which a slightly larger dose of radiation is given per day, allowing radiation to be delivered in a shorter period of time, most commonly in 3-4 weeks."

Finally, I get to the truth and find that 2 weeks less, slightly higher dose radiation offers fewer side effects? Why couldn't they say that first?

Another 'Upside' to Breast Cancer Treatment

Its not enough that breast cancer treatment consists of slashing, poisoning and burning. These leave a physical and emotional toll that can include additional ailments, including new cancers. One of them is nice rare one without much available research and a high mortality rate - angiosarcoma. Please read and enjoy the following:

"Physicians have long noticed that breast cancer patients who have had surgery or radiation therapy have an heightened risk of developing angiosarcoma, a rare type of cancer that originates in the lining of the blood vessels.

Now, researchers at Loyola University Health System in Maywood, Ill., have focused in on a finding that could be a possible precursor to angiosarcoma. With further research this finding could lead to more definitive markers that could predict those who are most likely to develop the disease. Angiosarcoma is a malignant, rapidly growing, highly invasive type of cancer that has a high mortality rate.

In a case study published in the Journal of the American Academy of Dermatology, researchers at Loyola identified what at first appeared to be only a tiny bruise on the right breast of a 63-year-old woman. Four years prior the woman had had a lumpectomy in the breast and radiation therapy for cancer. She had also had chemotherapy and hormone therapy. 

“Normally, when you see a benign-appearing vascular lesion, you probably would pass it up,” said Dr. Joshua Mandrell, a dermatologist who co-authored the report. “But given her history, we biopsied it and it did show that it was an atypical vascular lesion.”

Atypical vascular lesions are abnormal vascular growths that are thought to form in response to trauma, such as that caused by surgery and radiation therapy, according to the study. The lesions are so rare that few medical professionals are aware of their existence. There are also no well defined prognosis factors or treatment guidelines for them.

“Atypical vascular lesions are not completely benign blood vessel growths and are not angiosarcoma. They are right in the middle. They are atypical enough that we suggest in our study that they warrant treatment,” Mandrell said. “The thought is that they could potentially become angiosarcomas.”

How lovely is that? When I searched on cancer.org's website for angiosarcoma, this is what I found:

"This form of cancer starts in cells that line blood vessels or lymph vessels. It rarely occurs in the breasts. When it does, it usually develops as a complication of previous radiation treatments. This is an extremely rare complication of breast radiation therapy that can develop about 5 to 10 years after radiation. Angiosarcoma can also occur in the arms of women who develop lymphedema as a result of lymph node surgery or radiation therapy to treat breast cancer. (For information on lymphedema, see the section "How is breast cancer treated?") These cancers tend to grow and spread quickly. Treatment is generally the same as for other sarcomas. See Sarcoma: Adult Soft Tissue Cancer."

That was all that was listed. And when I went to the link for sarcoma, it was not even mentioned. Nice.

I can't wait. I had radiation and have lymphedema. I'll just add this to my list of crap to look out for. And if its related to cancer, it is all crap.

How did that happen?

One day you were admiring how your new bathing suit or skinny jeans fit and the next thing you know, cellulite and flab are taking over. How did that happen? Maybe cancer treatment?

First you start being lazy as you go through surgeries and can't get as much exercise as you did before as your incisions heal. Next you start chemo and enjoy the side effects of steroids and chemo drugs. Then, whammo, you look different, bloated, round face, and bald.

That was me. Some where a long there I stopped looking at myself in the mirror to prevent seeing further changes. That has worked for several years.

Then yesterday other people blogged about health and self image - Nancy at Nancy's Point and Lisa at Damsel in a Dress. Nancy's blog is about exercises to bolster your self image - start by kicking everyone out of the house, locking yourself in a room, and looking at your naked body in the mirror for 30 seconds, repeat daily so you can adapt to the way you look  now and not your imagined perfect size 6. I am not ready for that step. I'll start thinking about it tomorrow. I think its something I do need to work on.

Lisa reflects on the issue of steroids causing weight gain which causes many other issues. And its not shallow or vain to stress about that. She has RA and is in her 20s and coping as best she can.

So the question becomes for me does being sick kill off my self-image?  In my case yes. I think. Or maybe I need to refine it that to say the medications killed off my self image. First steroids gave me a moon face. Then a couple of medications caused an extra ten pounds here and there. A few more surgeries too. Then the aches and pains and fatigue set in so that I don't participate in as many activities as before. So I sit around on my butt more of the time.

And somewhere along that time frame I went from a size 8 to a size 12 (or so) and I never look at myself in the mirror or in pictures. I have not yet adapted. I promise I will work on this and maybe even someday take a peek at myself in the mirror.

Issue #937.2a that they never tell you about having breast cancer.

There are so many things they don't tell you about having breast cancer. Here's is another one. You may not be able to wear your wedding ring. Really. My cancer was on my left, I had a bad node that lead to a axillary node dissection, which lead to lymphedema issues.

I woke up in the middle of the night last night and noticed my left arm was puffy. This morning I spent some time and got my wedding and engagement rings off. Now the puffiness is subsiding. I have done some of the stupid lymphedema exercises. I will wear my sleeve today.

But my rings are on the pinky finger of my right hand. They feel like they might fall off. Damn. I want to wear them on the ring finger of my left hand and can't.

Cancer sneaks into your life in little ways. I wish they told us about all the issues before hand.

Thursday-itis

I have been getting Thursday-itis for weeks now. Last week on Thursday I ran around at errands all day - a dentist appointment, grocery store, etc. I came home and was exhausted. I went to bed and my husband cooked dinner. Yesterday, I went to work and then the gym. I was too tired to finish my workout so I gave up and came home.

Then I started thinking (a dangerous thing for me to do at times) what do I do on Wednesdays that could cause Thursday-itis? And the answer occurred to me. I get an injection of methotrexate on Wednesday evenings. Doh!

I have heard of the methotrexate 'hangover' and that is probably what I have experienced.

My schedule has been all messed up the last few weeks (due to unending snow storms). I try to work Tuesday, Wednesday and Thursday. That way I get a four day weekend. I also try to go to the gym on Monday, Wednesday and Friday. But with my schedule changes, I ended up at the gym yesterday afternoon, totally out of energy.

I will attempt to get my schedule back in order so I Thursday-itis has less of an impact on me. Or I could just change the day of my injection which would change Thursday-itis into someotherday-itis. Darn.