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'.

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 ...