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.

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 f...