Sunday, February 25, 2018

Cancer Not As Scary?

How scary is a breast cancer, or any other type of cancer diagnosis these days? This article, Thanks to advances, diagnosis of breast cancer isn’t as frightening as it was, claims it's not as scary as it used to be due to advances in diagnosis and treatment. However I beg to disagree. That is not the only reason. And societally, we have not changed enough.

Do you remember in the 1970s and earlier when people didn't talk about cancer? No, they whispered about it. So-and-so has cancer.... when's the funeral? Nice sequence there. But that is how life was. No one talked about cancer because it was a death sentence.  No one really knew anyone who had cancer and survived. Now as adults, we probably know people who have had cancer and didn't die. And are actually they are thriving.

Yes there have been lots of advances since the 1950s when the first chemotherapy became available. But it was not broadly available and sometimes the 'cure' was worse than the 'disease' due to the side effects. Now, we have targeted therapies and immunotherapy is coming into its own. But we don't yet have a cure.

But as a cancer person (when does one end being a cancer patient? When one is no longer here.) it is still very scary to be diagnosed with cancer. Just because it is easier to diagnose and treat now, it doesn't mean that it still isn't scary as hell. Cancer kills a lot of people. There is a lot that is not known about cancer and its diagnosis and treatment. More is learned every day. And the proverbial cancer cure is not yet available.

I am not sure if saying a breast cancer diagnosis is not as scary yet is premature or not. It probably is. Because most of us grew up with cancer as a whisper and not as a dinner table conversation. And more generations successfully live through cancer, it will still be very scary. If you choose to disagree, wait until you are diagnosed.

Thursday, February 22, 2018

What If The Pathologist Is Wrong?

And they won't review all the tests. This is a two part misadventure.

First I was horrified by this first story where two women were found to have been misdiagnosed by a pathologist at a hospital in Ireland. Their original breast cancer diagnoses were incorrect. One woman was diagnosed with DCIS in 2010 and had a mastectomy. Based on the original pathology she was not required to have any additional treatment. In 2012, to the surprise of her and her doctor, her cancer came back.

"Her original 2010 biopsy had shown invasive cancer but this had been missed.

The hospital said this was a mistake that any pathologist could have made and a review of 39 of the specialist's cases from 2010 was conducted.

The review found that of nine DCIS cases Alison and another woman were misdiagnosed."
It is nice to know what they did review some of the test results to find the ten cases. But wouldn't you think those ten cases were the proverbial smoking gun and want to review more cases, not just the ones from 2010? They only made errors during one year?

No, apparently not.

Although it was recommended to review all the pathologist's breast cancer cases, the hospital decided it was not needed.

"A review of the breast cancer test results for around 270 patients has been ruled out despite the doctor involved in their care misdiagnosing two other women with the disease.

St James's Hospital, in Dublin, which has the country's largest cancer centre, has refused to investigate the tests of the women, despite the call being made to Health Minister Simon Harris.

The decision follows revelations a former locum pathologist at the hospital misdiagnosed the type of cancer Dubliner Alison McCormack had in 2010, finding she had a form known as ductal carcinoma in situ (DCIS), which is not invasive."

[HSE = Health Service Executive in Ireland and provides all of Ireland's public health services in hospitals and communities across the country.]


"“The review highlighted that identification of subtle foci of invasive carcinoma within in situ carcinoma is a difficult diagnostic area that challenged both the individual pathologist and the wider pathologist group.

“The pathology conclusion is that this error could equally have been made by any other competent pathologist and does not represent incompetency on the part of the individual pathologist or a departmental systems failure.

“On the basis of the contents of the report it is the view of St. James’s Hospital that any further review of the remainder of the pathologist’s work is not warranted."

Um, if its an error that could be made by any pathologist, I am not sure I would want any of their pathologists, looking at my tests. And when the error was discovered, after the patient was rediagnosed, the hospital didn't even rush to tell her and waited until a meeting months later.

St James is a big teaching hospital associated with Trinity University and, I believe, the biggest hospital in Dublin. But if I knew this, I wouldn't go to that hospital unless absolutely necessary and want every test done, redone elsewhere. 

Tuesday, February 20, 2018

How The Post Cancer Brain Works

I have lots of aches and pain. This is a proven fact. You can ask any of my doctors. And I am also a klutz. And I have the battle scars to prove it.

Last week, I tripped over my father's wheelchair in the waiting room of the chemotherapy department. How embarrassing. In front of maybe 40 people waiting for their appointments. They all noticed.

This is what happened. We arrived at the hospital and my father grabbed a wheelchair. He has a bad leg so he pushes a wheelchair around instead of using a cane or walker. It's easier for him. He checked in for his appointment and we sat down to wait for him to be called. He parked the wheelchair sideways in front of the chair between us.

Then we both noticed a new quilt hanging on the wall. It's a lovely picture of lighthouse. My father suggested I take a picture of it for my cousin who quilts (as someone else was already photographing it). I got up from my seat, looking at the quilt on the wall. The next thing I knew, I was on my hands and knees in the middle of the floor.

Everyone around me gasped as they witnessed my extreme klutziness. I stood up and said I was fine. I didn't think I had damaged anything.

Then a nurse stopped by and asked if I was okay. I said I was. A second nurse stopped by and asked me to walk with her for a minute and wanted to make sure I was fine. She asked if I hit my head. I said no, just my fat butt. Finally, when my father was getting his port flushed, I think my father made a joke about me tripping over wheelchairs. His chemo nurse asked if I was the one causing all the trouble in the waiting room. I said my fat butt landed on the wheelchair but I was fine. My 'padding' saved me from any injury. Precisely I have a bruise on the back of my left thigh to show my landing point.

Why am I telling you this story? (Patience please.)

Fast forward a week: I have had a horrible cold (not as a result of my flying leap over a wheelchair). I have been spending a lot of time in bed as a result of that cold. It now seems to be getting better but I am still in hiding in case I have germs. The problem is that I seem to be having new problems with my right hip as it wraps around towards my spine. I really do not think I landed on it.

But I have had some pretty significant pain from it if I am sitting or standing for any length of time. And if I have pain that gets past my pain patch, its bad. I have been managing it by staying in bed. Yesterday I had to ice my new pain for a good 20 minutes to get it back to a reasonable level after weaving for a while - sitting in a chair.

I have decided to call my doctor because it is getting worse, not better. My cold is much better. But the pain is worse.

Finally, I am at the point of how the post cancer brain works: Is it a bruise I don't remember getting in my flying leap over the wheelchair? Or is it a BAD thing, like cancer cooties? The logic side of my brain says 'its a bruise'. The cancer side of my brain says 'its cancer and I am going to die'.

Anyone else do this?

Sunday, February 18, 2018

A Good Book Ruined By A Bit of Reality

I am a bookworm. As a child I always wanted to go to the library and didn't mind that if I read my newly selected books on the way home I might start to be a bit woozy from the wiggly New England roads. (Highways are much better for car reading.)

In times of stress (read 'medical disasters' among other things) I often turn to books as my personal form of avoidance. This was fine until my medical maladies kept interfering with my reading enjoyment. That would really suck.

During college, after thyroid cancer, with my small paperback book collection, I would avoid studying or read in bed something less enlightening than any required reading. At point, I remember I had a book I really was getting into, something about a young woman and her life.... and she needed a heart transplant or could die... That was enough for me. I had a cancer diagnosis and was trying to deal with the same issue - I could die. I remember throwing that book across the room and giving up on it. It hit too close to home for that time in my life.

It took several tries and several years before I could finally read it. But it was a good book ruined by a dose of the mortality of man. To this day I hate it when that happens.

Shortly after my breast cancer diagnosis, someone recommended to me that I read this book written by a breast cancer patient. For the life of me I can't find it now. But I did like it. The author was writing the story about her breast cancer journey. She was a cartoonist so she wrote it in cartoon format. From diagnosis through treatment, it talked about everything - scanxiety, chemo side effects, etc.

I really enjoyed reading it. Until I got to the part where she died.... And it was finished by her husband. I was very upset.

Since then, I have been very selective on what I read. Sometimes it seems that book and book and TV show after TV show are about someone's cancer journey - good stories ruined by a bit of reality.

I found a library book this week, Virtually Perfect by Paige Roberts, about a woman who was a chef and had a TV show on the Food Network until it all falls apart. The back cover blurb promised a story about her summer adventures as a chef of the very rich and who she reinvents herself. It looked interesting. I love books about chefs because they talk about food - which is something I could talk about and eat for ever and ever. At no point did it realize it included a secondary plot.

Twenty pages into a 300 page book there is a hint about her mother's health. And presto, the secondary plot is exposed as the story of the mother's breast cancer journey and how she tried to figure out how to tell the star, her only daughter, about her breast cancer. The second plot appeared and left throughout the novel.

At first I was a little annoyed as to how a good story was being ruined by the cancer story. But then I discovered it was handled extremely well. It showed the range of emotions of how do I tell, I need to tell her, but no I don't want to ruin her summer, to no don't tell her yet. A breast cancer story was there but it was a subplot. I could handle that.

This time I decided it was handled so well, and perhaps I have come further along emotionally, that I ended up enjoying it. And would recommend it.

Maybe i won't be so selective about books I read in the future. Cancer won't drive me away as often.

Friday, February 16, 2018

Comparing Prognostic Breast Cancer Tests

Back in the late 2000's, I heard about the new Oncotype Dx test that was just coming available for women who had early stage breast cancer and could help in the decision making process - whether to chemotherapy or not. The test was supposed to tell your risk of recurrence. That was great news (of course I was not eligible because of my medical history...) and many women found their risk and made the big chemotherapy decision.

New research has looked at the results of these tests and compared them. They looked at these four tests: Oncotype Dx Recurrence Score, PAM50-based Prosigna Risk of Recurrence Score (ROR), Breast Cancer Index (BCI) and EndoPredict (EPclin).

"The analysis, published in JAMA Oncology, funded by Cancer Research UK and involving co-authors at the Institute of Cancer Research, compares four common prognostic tests for breast cancer, and finds that not all are able to accurately predict whether the cancer will return after five years. This could be limiting clinicians' abilities to advise patients on whether chemotherapy or preventive medication, in the form of endocrine therapy, should be taken.

Lead author Dr Ivana Sestak from Queen Mary's Wolfson Institute of Preventive Medicine said: "This is the first time that anyone has directly compared the prognostic performance of these four common commercially-available tests. This gives clinicians and oncologists the opportunity to review all the results and decide upon the test they want to use for their breast cancer patients.

"If a woman is deemed high risk of recurrence by any test, the benefit of chemotherapy is greatest. In contrast, if a women is deemed low risk then endocrine therapy alone will be sufficient and patients could forego chemotherapy and its side effects."

The FDA approved ROR and the European Society for Medical Oncology recommend Oncotype, ROR, and EPclin. The research found that while the tests provide good information Oncotype was found to lag behind the other three newer tests. And another nice factoid for all of us is:

"However, one important critical time period to consider is years 5-10 after the start of treatment, since over 50 per cent of women with ER+ breast cancer develop a recurrence after five years. BCI, ROR, and EPclin were found to be the most accurate for stratifying women into low or high risk of recurrence after five years in patients with node-negative disease.

For women with node-positive disease2 only those tests (ROR and EPclin) that incorporated clinical information (e.g. tumour size and the number of positive lymph nodes a woman has), as well as gene expression levels, provided substantial prognostic value."
I think to keep those dark thoughts saying 'what if...' at bay, I need to talk to my oncologist about these two tests, ROR and EPclin, and see if I am eligible for either one of these... 
New research can be good but if you can't take advantage of it, it is of no use. 

Thursday, February 15, 2018

Treatment Resistance Breast Cancer

Most breast cancers are hormone receptor positive or (ER+) and are treated with multiple therapies including chemotherapy and hormone therapies including tamoxifen and aromatase inhibitors. But the problem is then that after they metastasize,  a third of them become resistance to treatment and will cause your demise.

"Such endocrine therapies, including tamoxifen and aromatase inhibitor drugs, can prevent recurrence of early breast cancer, and can slow the progression of metastatic disease. However, in about one-third of patients with metastatic ER-positive breast cancer, treatment with endocrine therapies leads to the emergence of tumor cells that grow even in the absence of estrogen hormone, resulting in treatment-resistant disease that is often incurable."

Isn't that 'awesome'? If you have metastatic breast cancer and are treated with an endocrine therapy you have a 1 in 3 chance that its not going to cure your cancer - and you have no way of knowing if you are or not. However reesearch has been going on at Dana-Farber on this very topic.

"In the new report, however, the Dana-Farber scientists revealed another previously unknown effect of three of the mutations in the ER gene. That is, the mutations not only cause resistance to estrogen blockade, but also turn on genes that drive the breast tumors to metastasize to other organs. This kind of unexpected additional action of a mutated gene is termed "neomorphic."

"That tells us that even though the drug therapies are selecting tumors that can grow without estrogen, the mutations also confer a metastatic advantage to the tumor," explains Brown."

I don't like the idea of of the tumor getting an advantage. But they did identify the gene CDK7 is one of the essential ones in the mutation process. Another scientist at Dana-Farber had previously developed an experimental CDK7 inhibitor, THZ1. This now will lead to a clinical trial on this.

"Jeselsohn said that clinical CDK7 inhibitors are being developed, and that "we hope to test these drugs and develop a clinical trial for patients with ER-positive metastatic breast cancer.""

I just want a clinical trial that doesn't take ten years to help women with metastatic breast cancer now.

Wednesday, February 14, 2018

Doctors As Patients

I think doctor's make the worst patients. A friend's father, she told me, was a doctor but ignored his own cancer symptoms and said he was fine until he wasn't. I have never met a doctor who rushed to be a patient....

But I think the best training for a doctor is to be a patient - particularly a patient of the disease or ailment they treat. This would provide so much more understanding for them.

Here is the story of a British breast cancer surgeon who was diagnosed with breast cancer in 2015 and finally returned to work in 2017. She never expected to face this diagnosis. I don't anyone ever does.

"Doctors face particular challenges when they become patients—challenges that they are rarely prepared for. It is hard to relinquish control and allow others to dictate the treatments that you yourself are used to doling out. It is crushing to know your own prognosis in the starkest terms—a 65 percent chance of surviving for 10 years, in O’Riordan’s case. It is awkward to see your own former patients while you’re being treated: To strike up a chat would break confidentiality."

I would like to disagree here. I don't think it would be awkward to see your own patients while in treatment. I would not expect my doctor to treat me as a patient if I run into them in the store or something. I just say hello as I would with any other person.

"And it is difficult to be cut off from the same supportive forums and networks that other patients use to share experiences and support; if you let slip that you’re a doctor, you become a source of information, rather than a comrade in illness."


I have had doctors and nurses in my support groups. No one in the support group expected them to be any more 'up' on new treatments or provide constant medical advice because that is not what they are there for. They have occasionally filled in on a specific question or answered a question along the lines of 'should I go to the ER for this'. But that's it. In a support group setting, we can't anyone there to provide medical advice. First because they are there for support and second because they have no knowledge of our medical records.

"How much, for example, should she share with her own patients? O’Riordan had blogged regularly about her cancer. She had even done a TEDx talk. But she practices medicine under her maiden name, so few people would make the connection between her online persona and her professional one. Ultimately, she decided to say nothing at first, revealing her experiences only to patients who have completed their treatments and are dealing with the side effects. It helps them, she says, to know that their doctor fully understands how hard it is to live with breast cancer. “You don’t want to compare yourself to other people,” she says. “But when they’re going through that journey, it helps to know that the doctor has, too.”"

I absolutely think she should have felt she could share her diagnosis if she wanted to her patients with the same diagnosis. My best therapist ever had had breast cancer ten or fifteen years before she started seeing me. Because she opened up about this, while we didn't discuss it often, I felt much more comfortable because she 'got me' through her own diagnosis.

I would be very happy if I knew more about some of my doctors. No, I don't want to know everything about them.  But if I knew they had been through what I was being treated for it would greatly increase my comfort level. (Why is doctor patient confidentiality only one way? That's a question for another day blog post.) This especially holds true for specialists in my opinion.

Think about it - if you knew your gall bladder surgeon had had the same surgery as he was treating you. Wouldn't your comfort level with him go up a few notches? He survived, so can you.

Finally, I would like to state that I do not think that this surgeon was ready to return to work. If her brain was compromised by chemotherapy to the point she could not remember instrument names, I would not want her operating on me. Part of healing after cancer, or other ailments, is getting back to the same physical and mental states.

"Chemotherapy can famously fog the brain for years after the treatments end, so she still finds it hard to concentrate for more than half a day. When she returned to the operating room, she performed all the old procedures flawlessly, but at one point, she forgot the names of her instruments. “I was closing the skin and needed forceps to hold the tissue, but I couldn’t remember what they were called,” she says. “I was doing the action with my hand, and thankfully, with a good scrub nurse, you don’t need to ask.”"

My opinion is that just because she is a doctor it doesn't mean she should give herself clearance to go back to work. She was not able to work independently and needed to lean on her support staff to that extent.

In addition I will go read her blog to learn more about her. She has completed a school of hard knocks.

Tuesday, February 13, 2018

Doctor Questions

We are always told to write down your list of questions for your doctors and even bring someone to write down the answers. This can be appropriate for when you are first diagnosed with something nasty. But it doesn't hold true for regular follow ups with  your other doctors.

Over the years, I have learned not only to bring a list of doctor questions to appointments. But I have also learn to break it down into as few as possible, into two categories.

Category one is for the list of issues you have noted since last seeing them. For example you had the flu in November for ten days. Or have been under a lot of stress from work recently.

Category two is for as few questions as possible. Like three if you can do it. For example, if you were seeing your cardiologist:

  • What was my latest test result and what does that mean?
  • What are my treatment options for now?
  • What is my prognosis/next steps?
They may sound simple, like in the 'duh' category, but they are the ones you really want to get answered and take note of the answers.


I can't tell you how many times I got to my doctor appointment and have a huge list of questions and only get through the first few. Prioritize. Keep it simple. Your doctor is probably short on time so you can't overwhelm them with too many things at once.

However if you have a huge issue, you need to make sure that is the main topic of your conversation. Its your appointment and you need to make the most of it. So be efficient.

Sunday, February 11, 2018

Brachytherapy for Breast Cancer Follow Up

Back in 2007, when I was diagnosed and treated for my breast cancer, I heard about this new technique for the radiation portion of treatment, brachytherapy. I was jealous. It was not offered at my hospital. The big thing I liked was that it took so much less time for treatment.

Breast cancer treatment takes a LONG time. I was diagnosed at the end of May, after two surgeries that went into July, I finished chemo in December, and needed one more surgery (don't ask). I was then facing 7 weeks of radiation. I just wanted to be done. Since brachytherapy wasn't available I had the standard radiation treatment. I couldn't even have the shorter radiation protocol where you go twice a day for a week (blanking on the name).

Now, I was reading another article discussing breast biopsies in follow up breast cancer treatment. Buried in the article is this statement:

"They looked at 41,510 breast cancer patients in MarketScan (the national database of patients with private insurance, age 64 years and younger), and 80,369 breast cancer patients in SEER-Medicare (patients age 65 years and older). All had Stage I - III disease and were diagnosed between 2000 and 2011. Diagnosis and procedural codes were used to identify biopsy rates during follow up.

Five- and 10-year overall incidence of breast biopsy was 14.7 percent and 23.4 percent, respectively, in the MarketScan cohort, and 11.8 percent and 14.9 percent, respectively, in the SEER-Medicare cohort. Adjuvant chemotherapy use, patient age, and endocrine therapy were independently associated with biopsy in both cohorts.

Of note, say the researchers, the five-year incidence of breast biopsy was higher in women treated with brachytherapy, compared to those treated with whole-breast radiation: 16.7 percent in the MarketScan cohort and 15.1 in the SEER-Medicare cohort..."

The study does note that women can become very anxious after breast cancer treatment but does not offer a reason why the biopsy rate is higher after brachytherapy. But says they are still actively recruiting patients. 

Saturday, February 10, 2018

Genetic Testing and Non-High Risk

A person can be considered medically high risk due to their or a family member's medical history. If you are considered medically as high risk, you get popped into the category of give them lots more medical attention and 'lovely' tests.

Now with the progress of genomic testing, its no longer a big expensive, rare proposition. However, why do we only test the high risk people? These are the people who already know they are high risk. But that leaves a lot of people who don't know they are high risk and could be. This doesn't make sense. Some new research asks if it wouldn't it make more sense to test more people who aren't necessarily considered high risk? That might be more practical and save lives.

"A study published in the Journal of the National Cancer Institute indicates that screening the general population for mutations in specific genes is a more cost-effective way to detect people at risk and prevents more breast and ovarian cancers compared to only screening patients with a personal or family history of these diseases.

Current guidelines recommend that only those with a personal or family history that could indicate a greater risk of developing cancer be tested for gene mutations that can cause the disease. However, the successful use of testing for high-risk groups has led many to consider extending genetic testing for cancer to the whole population."


As I said it does make a lot of sense to do this. You would find people who did not know they were high risk and help prevent many more cases of breast and ovarian cancer. 

Mutations that cause cancer can occur in many people with no history to indicate a risk. These people are therefore not included in screening programs that target high-risk patients and the mutations remain undetected. The researchers of the new study estimate that implementing a program to test all women over the age of 30 could result in thousands fewer cases of ovarian and breast cancer in women in the US and UK.
However my response to this idea is a big fat 'No'. Isn't it kind of 'big brother-ish'? Yes it is. I'm sorry, but I would not approve of their approach to testing all women over the age of 30. The researchers then suggest:

"Population testing for breast and ovarian cancer gene mutations is the most cost-effective strategy which can prevent these cancers in high risk women and save lives,” said the paper's lead researcher, Ranjit Manchanda. "Our findings support broadening genetic testing for breast and ovarian cancer genes across the entire population beyond just the current criteria based clinical approach...""

It may be cost effective but that is not a way to treat patients. We are not little cost effective units that can be modernized or tested to meet some kind of cost effective study. We are human beings and need to be treated as such.

Yes I agree that we are normally subject to requirements to be immunized for certain illnesses. But this is different. Part of the reason for immunizations are that they are to prevent contagious diseases that can be passed from person to person. They can cause epidemics that can kill multiple people and cost significant amounts in medical bills.

Ailments causes by genetic mutations are not contagious. They affect only one person at a time. A person's genetic traits are unique. They should be kept private. They do not belong in some database anywhere to follow people around.

This would result in discrimination and bias if known to potential employers, health insurance companies, and life insurance companies. Even if such discrimination was illegal it would still happen. So no way in my opinion.

Finally, what if patients do not want to be tested. Some people (myself included) would not want to know the results of such testing. This is why I will not go to a fortune teller or tarot card reading. I do not want to know. I have enough to worry about as it is.

Clearly this is a case of 'just because we can, doesn't mean we should'.

Friday, February 9, 2018

Up and Down, Again

Everyone has ups and downs in their life, especially with their health. Or maybe I have more ups and downs than the average person.  Okay, maybe my health has been on a downward slide for a while few years now.

However, I realized the other day that I was actually feeling pretty well for the first time in quite a while. I mean my back has been sore but the rest of me has actually been doing okay. Its kind of nice actually. And it makes me think how long its been since I felt that well.

I had been feeling as if I was over-medicated in some ways for the past few years. I changed my pain management doctor and had reduced some medications over the past six months, with the help of my new doctor. I also finally am on a new medication for my rheumatoid. Finally, I think I am finally healed from my knee surgery. I think I also had a case of the flu in mid December (but I had gotten a flu shot so it wasn't that bad.)

All of those combined were apparently wearing on me.  But now I feel pretty good. I was considering talking to my husband about going for a walk with him this weekend. But that didn't last long.

For the past couple of days, I realized I have been feeling pretty well. This morning I had a lot of energy. I even was planning my social life for once. After the gym today, I went to the library. After I left the library, I realized I had to go pick up my prescriptions (again). All of a sudden I was exhausted. I didn't even have the energy to bring in the empty trash barrels. I dragged myself into the house and ate some food which helped. But now I am lying in bed. Probably for the rest of the afternoon.

Tomorrow will probably be similar. Up and down. If I get a fairly good night's sleep, there will be more up than down. But overall I am feeling better mostly.

Thursday, February 8, 2018

Overloaded with Instructions

I get it. I have a lot of ailments so I am in a lot of groups and follow a lot of organizations for their health tips. So I get lots of email. Tons of email to be precise. Some of it gets the delete button right away - especially if the subject line doesn't tell me anything.

But then I read glance at a lot of them before deleting. But often they provide suggestions or instructions how to be healthier for whichever ailment. But now I am overloaded with instructions/suggestions this week:

This is a partial list of what I have received this week. Last week there was something about coffee being bad. I have gotten instructions on so many things, I can get confused (which is not difficult at times). 

I realize one option is to stop reading about my ailments and receiving these emails. But I think it is important to understand as much as possible on your ailments. The more you understand about what is wrong with your body and what you can do to improve your situation.

On the other hand, it is definitely an overload. I do not have time to read all the emails I get. I pick and choose which get deleted immediately. Some I save for more in depth reading scanning at a later point. 

So not only do I get bombarded with ailments, I also get overloaded with instructions. Sometimes I cope by taking a nap or going to the gym to burn off stress. A nap usually sounds best.

Tuesday, February 6, 2018

My Back Pain Break Is Over

Just over a year ago, I switched to a new back pain doctor because my old one was an idiot. I like my new doctor. I saw him a whole bunch of times through 2017. At my last appointment, he said to me "instead of scheduling your next appointment, why don't we wait and see how you do and you call me when you need to see me?" I thought that was fine. I have not seen him since November and have nothing scheduled.

Unfortunately, my back is very unhappy with me in many ways. The pain level breaks through my pain patch. This has been going on for a week or so. I might wait another week or so before calling but I don't know how long I can last.

Damn, damn, damn. This does not make me happy. I didn't lift or carry things anything. I have done some laundry today but that doesn't usually hurt my back. Today I think I had an uncomfortable chair at the garden club meeting today.

On a positive note, it has been a while since my back has been this bad and required any treatments. This has been a very nice break. But at least I am not seeing my oncologist.

Monday, February 5, 2018

Because Of Your Medical History....

Once you get cancer or any other 'nasty' medical ailment, this little phrase follows you for the rest of your life 'because of your medical history...'. If you have this phrase following you around, you are lucky when you are not sent for more tests or additional follow appointments start filling your calendar.

As a child I was not the one (sister) who had ear infections non-stop or the one (brother) that went running around into and over and under things resulting into many minor injuries requiring stitches, etc. I was the reasonably healthy one, except for a few colds here and there.

Boom, at age 19, I was diagnosed with thyroid cancer and that magic little phrase started following me around. I never had a normal doctor appointment. Even if it wasn't discussed, that cancer history was still lurking in the air between the doctor and I.

It followed me for decades. Until I added another cancer diagnosis and then it followed even closer. And was probably written like this 'because of your medical history...'. Two cancer diagnoses before fifty and all the red flags start jumping up to the doctors. Do you have a genetic abnormality? Did you wade in toxic waste as a child or live next to a smelly factory? It didn't matter why, all it meant was I went to more doctor appointments than anyone I know.

Since then with a bad back (three different places), rheumatoid, and fibromyalgia, now my pet phrase is written like this 'because of your medical history...'. It is right on my heels every day. I now need my medical history to the point that I don't even dare to go to another hospital. It would take too much time to explain my ailments, allergies, and medications to any emergency room triage person. No, I can't print out a list to take with me because it changes too often.

So that little phrase has gone from an annoyance to a necessity. Damn. I wish I was healthy.

Saturday, February 3, 2018

More 'Uplifting' News on Breast Cancer Recurrences

Sometimes I wish they would stop researching breast cancer so we stop getting such 'good' news. New research was meant to look at whether some hormone receptor positive breast cancer patients could stop taking tamoxifen or aromatase inhibitors such as Femara, Aromasin, or Arimidex. However they found instead that ER/PR+ breast cancers can 'smolder' (their word, not mine) for twenty years or more, before recurring.

Aromatase inhibitors and tamoxifen inhibit the production of estrogen which feeds these ER/PR+ breast cancers. The longer you are on the medic

ation, the longer you are protected from a recurrence. However, some women experience side effects and want to get off them as soon as possible. Other women have no problems and stay on them longer than the initial five years.

“Even after 5 years of adjuvant endocrine therapy, women with ER-positive, early-stage breast cancer still had a persistent risk of recurrence and death from breast cancer for at least 20 years after the original diagnosis,” they wrote in their report, published in the New England Journal of Medicine.

“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,” Hayes said.


I am so excited by this uplifting news. Maybe its time to stop reading the research unless my oncologist tells me about something new.

Friday, February 2, 2018

If Breast Cancer Doesn't Kill You, Heart Failure Might

File this in the category of the stuff we should have been told but weren't. Many women diagnosed with breast cancer, are given chemotherapy as part of their treatment. One of the drugs commonly used is called Doxorubicin, also known Adriamycin or Rubex, or as us patients have been known to call it 'red devil', which carries a significant cardiac risk.

When you are given it in chemo the nurses put on masks and special gowns to protect them. No thought of the patients. I was told it could cause some cardiac issues but now I am learning that the danger is very real and very concerning.

"“Both breast cancer and cardiovascular disease share risk factors,” said Dr. Susan Gilchrist, a cardiologist at MD Anderson whose research focuses on cardiorespiratory fitness in cancer patients. "That includes weight gain, loss of exercise or sedentary behaviors, and metabolic dysfunction, which are a risks factor for breast cancer recurrence and cardiovascular disease.”

The greatest risk is from the chemotherapy drug doxorubicin, an anthracyclin. Eight treatments increase heart failure risk by 5 percent, up to a 48 percent increase after 14 doses, the doctors wrote in the statement.

But women with breast cancer are not encouraged to avoid treatment."


So there is a fairly significant risk of of cardiac damage but they are not going to encourage us to skip that treatment? If the you don't die of breast cancer, heart failure is more likely to kill you. Instead of skipping adriamycin for the benefit it gives, the advice is now to talk to your doctor. The problem with that idea (which is obviously written by someone who has not had cancer) is that patients with cancer care about only one thing when first diagnosed: get the effing cancer out of my body.

"“Any patient who is going to undergo breast cancer treatment — whether they have heart disease at the beginning or not — should be aware of the potential effects of the treatments on their heart,” said Dr. Laxmi Mehta, chair of the AHA writing committee and director of the Women’s Cardiovascular Health Program at The Ohio State University in Columbus, Ohio. “This should not deter or scare patients from undergoing breast cancer treatment, but should allow them to make informed decisions with their doctor on the best cancer treatment for them.”

With the statement, the Heart Association hopes to change perception of the biggest threats to women after beating cancer. Breast cancer survivors, over 65, are more likely to die from cardiovascular diseases, such as heart failure, rather than breast cancer."

That does not make me happy at all. I survive cancer and chemotherapy so I can die from heart failure? 

“We want patients to get the best treatment for their breast cancer,” said Mehta. “Everyone should have a conversation with their doctor about what are the side effects.”

Sorry not good enough. We need a better treatment for breast cancer that doesn't have such a hig risk of heart failure.

Thursday, February 1, 2018

A Useless 'Perk' from My Health Insurance

I have found them most useless perk from any health insurance plan ever. When I was diagnosed with RA, my health insurance informed me that I was eligible for this perk called the Accordant Care in.

What this plan includes is a quarterly conversation with a nurse on current medications and any recent heath issues I might have had as well as a monthly newsletter with health tips. The nurse is also available at other times if I have questions on any health issues.

That all sounds good, right? Wrong.

Every conversation with the nurse consisted of them reading me scripted questions that I had to answer: have I fallen in the last ninety days, do I have additional issues, have I had an RA flare, etc. Also, a review of each and every medication I am on and asking if I am still taking the same dose and if I have changed any medications. This could take as long as 20 minutes. I never have benefitted from any of these phone calls. I often felt like was interrogated during each call as I had to wait for them to review each medication and then go through the rest of their script.

Their newsletters are also useless. First, I used to get them electronically. The email would come with a long url in it where took you to a secure page where you had to sign in. If its a newsletter why does it require a secure log in? So they can tell if you actually read the damn thing.

I couldn't deal with those newsletters so they switched me to the printed ones. Often they are only one 8.5"x11" sheet printed double sided, in large type, with half a page of mailing space and fine print. So on those, you would often get one topic article that was about 200 words long.

I just got the latest newsletter and its just as annoying and just as useless. The four articles include: staying healthy and out of the hospital - you should have that as a goal; tracking changes in your health by keeping a journal; when you should call your doctor; a checklist for when you see your regular doctors; and finally a continuation on setting goals for 2018. 

It did not tell me anything I didn't already know. Its written in language an 8 year old could understand. And since its put out by doctors who probably had a lawyer vet it so it doesn't provide anything specific, other than you need to see your dentist every six months.

I have been ducking their calls for the last two years. If I could figure out how to get out of the program I would. If it was offered to you, I would not recommend it.

The lesson I have learned here is just because you are eligible for a 'perk' do not accept it before knowing what you are getting into. Accordant Care is just awful for the patient.

Living With Limitations in the Family

This is the misunderstood side of my life - how I live with limitations. The other day, I visited my mother who also has RA. We went for a w...