Hidden Scars from Breast Cancer

Yes there are lots of hidden scars in breast cancer. I have discussed the emotional side a lot - which boils down to PTSD for some. But there is also the physical side. Every time you look at your body and see your cancer scars, you are reminded of  your cancer misadventure. Its only a scar that will fade over time but its still there.

Back in 1984, I found my first breast lump. Due to the limitations of surgery at the time, I had to have an excisional biopsy. And because of my medical history (three years after thyroid cancer) they had to be sure. (And if you are trying to calculate my age, I am still only 37). So I had a lumpectomy (aka excisional biopsy). And it was benign which was good. But it left me with a scar. A big fat red scar.

After surgery, I realized I had a bigger problem than normal in bathing suit shopping. I had this giant scar, 2" long, on the outside of my left breast that ran horizontally across toward my armpit. Bathing suit shopping is bad enough with the unflattering fluorescent lighting, holding your stomach in while you are trying to decide if it will fit when you really do lose those 10 pounds by June. Then you have to add in - will my scar show?

Seriously, it took me a good 10 years for the scar to fade and for me to stop worrying if  someone might see it sticking out the side of my bathing suit. It was a bit of vanity for me. But I already had a scar on my neck from thyroid cancer surgery that could not be covered up in a bathing suit. I really didn't need a second visible scar.

Now surgery is catching up to my bit of vanity. At Beth Israel Deaconess Medical Center in Boston, they have pioneered breast cancer surgery with hidden scars.

"Traditionally, the procedure would place an incision directly over the tumor, making it very visible. But Beth Israel Deaconness Medical Center now offers another option.

"The more we can make the scar smaller, or put it in a place that can't be seen, the better for the patient," said Dr. Ted James, chief of breast surgical oncology at the hospital.

He started offering hidden scar surgery here last year.

"What the hidden scar surgery tries to do is to place the incision in a less obvious or visible location. Under the breast is one location. You can also make it around the areola, that's another place where you can hide a scar, and if the incision is very high on the outer portion, we've actually gone through the armpit," James said."

"Hidden scar surgery can take a bit longer than traditional procedures, but recovery time is about the same."

A lot of progress has been made in treatment of breast and other cancers but I really do like the idea of taking into account the fact that the surgical scars can be a less prominent reminder of our cancers each time we look at our bodies.

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.

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 hospital released a statement:

"“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. 

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. 

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.

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.

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. 

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.

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.

New Breast Cancer Research Found A Factor that Doubles Death Risk

Isn't that a warm fuzzy feeling? Now I want to ask my oncologist if I have this factor. But first let me see if I can explain it. This is the precis:

"Researchers at Karolinska Institutet in Sweden have discovered that the risk of death from breast cancer is twice as high for patients with high heterogeneity of the estrogen receptor within the same tumour as compared to patients with low heterogeneity. The study, which is published in The Journal of the National Cancer Institute, also shows that the higher risk of death over a span of 25 years is independent of other known tumour markers and also holds true for Luminal A breast cancer, a subtype with a generally good prognosis."

Apparently Luminal A breast cancer is a subtype of hormone receptor positive that usually is a good thing. But if your hormone receptor status changes when you develop a metastases or even with in your first tumor (which sometimes happens). 

"Why this is the case, however, is not known, but a possible explanation is that there are tumour cells in one and the same tumour with varying degrees of expression of the estrogen receptor. This is known as intra-tumour heterogeneity."

But some recent research found that patients with high heterogeneity and Luminal A breast cancer, regardless of previous treatment, were found to have double the death risk. 

"Our study shows that patients with high intra-tumour heterogeneity of the estrogen receptor were twice as likely to die up to 25-years after their diagnoses as compared to patients with low heterogeneity," says Linda Lindström, researcher at the Department of Biosciences and Nutrition, Karolinska Institutet. "And this was independent of whether or not they'd received tamoxifen and of other known tumour markers."

The researchers also discovered that the greater risk of death for patients with high intra-tumour heterogeneity also applied to patients with Luminal A breast cancer, a subtype of estrogen-receptor-positive breast cancer that is considered to have a good prognosis."

So what does this all  mean to the average bear breast cancer patient? Me, I'm going to add this to the growing list of things to ask my oncologist. I don't know if I was ever tested to find out about heterogeneity or Luminal A and if I can be now. But I want to find out.

This is a classic case of new research on cancer finding more differences in the different types of cancer. As we have learned, cancer is not one disease but hundreds, or thousands of different diseases. Scientists are slowly unraveling them one step at a time. Sometimes panicking us patients, and sometimes making us feel a little bit better. But the process is way longer than I want.

I Am Very Confused

I realize this must be part of the vast conspiracy to keep breast cancer patients confused. Nancy, over at Nancy's Point, blogged about the AJCC’s Updates to the Breast Cancer Staging System, asking if we are confused about it. Well, since I didn't know about the updates (or even who the AJCC is) I was and still am very confused.

Let's start with the AJCC or the American Joint Committee on Cancer. Apparently they are the people who set up cancer staging criteria. They set the original TNM staging system in 1959. TNM means Tumor size, Nodes positive, and Metastases. 

"The panel recognized the need to incorporate biologic factors, such as tumor grade, proliferation rate, estrogen and progesterone receptor expression, human epidermal growth factor 2 (HER2) expression, and gene expression prognostic panels into the staging system. AJCC levels of evidence and guidelines for all tumor types were followed as much as possible. The panel felt that, to maintain worldwide value, the tumor staging system should remain based on TNM anatomic factors. However, the recognition of the prognostic influence of grade, hormone receptor expression, and HER2 amplification mandated their inclusion into the staging system."

I used to know what stage I am - IIA. Now I can't figure it out. With all this other stuff included. I am very confused. I looked at the American Cancer Society's website for help. And I am even more confused. There is no more little chart that shows what you stage you are. 

So here is my game plan: I will ignore all this new information until I meet with my oncologist sometime next summer and ask her. I feel this is better for more. A little ignorance and confusion will go a long way in reducing my stress. 

Now all of us breast cancer people can have these little conversations:

'What stage are you?'

'IIa, I think.'

'Is that the old staging or the new staging?'

'What new staging?'

'You didn't hear about it?'

'No.' 

All the breast cancer staging changed in 2018. They added all sorts of new information, grade, hormone status, etc'

'Oh, so if I was stage IIb, do you know what new stage I am?'

'No, I don't even know what stage I am. I can't figure  it out. I'm going to ask my oncologist.'

'Crap, let me call my oncologist too.'

But I swear there is a vast conspiracy out there to keep us all confused.

Tumor Evolution

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

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

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

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

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

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

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

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

That Lingering Risk Thingy

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

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

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

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

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

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

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

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

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

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

Waiting for Cancer Research

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

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

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

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

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

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

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

Followed by the deflation:

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

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

Just Because We Can, Doesn't Mean We Should, And Who Pays For It

Back when I was first diagnosed with breast cancer, I first learned about the OncotypeDx genomic test for women with breast cancer. Of course I was not eligible for it. I can't remember why - whether it was because it wasn't my first cancer, or I had a single tiny positive node.

I am never eligible for anything because my health is too complicated to be eligible for anything. I have way too many ailments, previous or current treatments, or something. But I digress.

I watched all these other women get the tests to find out their risk of recurrence. Over the years, genomic testing has expanded from the OncotypeDx test to include a group of available tests. Which I was never eligible for....

These tests can provide helpful information. However, would everyone diagnosed with breast cancer benefit from these tests? Would the benefit of these tests outweigh the costs of them? Insurance companies never want to pay for more testing, even when it might show that a patient can have less treatment in the long run. And we cannot forget the additional stress on the patient for more testing.

A group of oncologists met at the Chemotherapy Foundation Symposium and had a moderated discussion about which breast cancer patients should have genomic test. The result of this discussion was:

"...that not every patient needs to undergo genomic testing.

He gave an example of how, traditionally, older women unfit for chemotherapy do not undergo genetic tests. “I think that this can really apply to any age, 3 cm or below, node-negative disease,” he said. Additionally, low-risk patients — possibly 20% to 30% of patients — most likely do not need to be tested, according to Brufsky.

“You really have to choose,” he said. “I think the payer’s like that, the patient’s like that, and I think we’re a little hesitant sometimes to say to [our patients], ‘Listen, you have a tumor that’s just going to do great, no matter what we do, and you don’t need to be genomically tested.’”"
Just because we can offer these tests, doesn't mean we should test every patient. Even without pushback from insurance companies on costs, more testing is never always beneficial for patients. Or for their emotions and wallets.

One Last Story on How Life Sucks After Breast Cancer

Okay, maybe I have been in a rut because I have been stuck at home after knee surgery because I can't drive. Or maybe because I have a cold that I am obsessing on crappy lives after cancer. Or maybe the internet gods had their stars align and all these stories ended up on my laptop in the same time period. But I hope this will be the last one for a while.

Here's the story of a young woman who lost both her husband and her sister because of her lengthy cancer treatment.

"“The reality is that probably four out of seven days I’m in bed,” explains the 39-year-old, who lives with her mother at Bundall.

“I’ve had my left hip replaced. My right hip is headed the same way. The pain is excruciating and I’m on some heavy duty pain relief. My lungs have been affected. I had my gall bladder removed last year. I’ve developed cataracts."

Kate Carlyle is a former radio personality from Brisbane Australia. In the past eight years she has gone through two breast cancer diagnoses and a leukemia diagnosis which required a bone marrow transplant. The bone marrow transplant is what cost her a sister - her sister could donate but became pregnant and couldn't donate at the last minute - causing a long term rift which continues today. She was saved by an anonymous European donor.

The stress of her cancer roller coaster cost her her husband. She is not the first to lose a spouse over the stress of cancer diagnosis. But it just makes things suckier. During cancer treatment is you are not at your best to deal with marital issues.

So yes, life after cancer can be very sucky. They don't tell you all this. Yes you can get divorced or have a long term rift with a sibling without involving cancer treatment. But when you are coping with a significant health issue you don't need the other crap.

So as Kate says in the end: "“I love being alive and if that means I have to battle through at times, so be it.”"

Being alive is the most important thing. It is the goal of any cancer treatment - to still be here for all the little things in life - birthdays, anniversaries, marriages, friends, family, change of seasons, butterflies,...

Tumor Size Doesn't Matter

All cancer tumors start small and end up bigger. This is logic that is clear as day.  Tumors don't show up 3 cm across out of nowhere.

A new study states that even small breast cancer tumors can be aggressive. Well duh. If all tumors start small, of course aggressive ones and indolent (slow growing) ones are included. I don't call this news. I just call this an exposure of logic.

When I was diagnosed with breast cancer I was happy to learn more about my tumor. Its hormone status (ER/PR) was important, Her2 status was important, and tumor grade was import. The grade is a scale of one to three on how aggressive a tumor is. (This is my non medical training kicks in.) If there are lots of dead tumor cells, that shows growth because tumor cells which are aggressive are growing fast and dying off fast. The presence of lots dead cells is an indication of this. An aggressive tumor warrants more aggressive treatment.

I was lucky. My breast cancer was average in many ways. It was ER+/PR+ - meaning I was a good candidate for hormonal therapy, Her2- - meaning I didn't require additional treatment of Herceptin, and grade 2 - meaning it was average on the scale of indolent to aggressive.

I had a friend who was diagnosed about the same time as me. She was gone in three years. Her cancer was about the same as mine except hers was very aggressive. That's the difference with an aggressive cancer.

However this study does provide some good information:

""This study shows that it's not only tumor size that is important for breast cancer patients but also tumor biology. All tumors in the study were small - less than 1 cm - and the lymph nodes were free of cancer (node negative), which in principle should be a signal of good prognosis. But nearly one in four patients - those identified as genomic high risk - derived benefit from chemotherapy.""

""Small node negative tumors can be very aggressive, even if they are classified as clinical low risk," said de Azambuja. "Tumor biology needs to be taken into account when deciding adjuvant treatments in this patient population. One cannot forget the patient's age, performance status, comorbidities and preferences during the discussion.""

New Research Which Could Have More Thought

There is always more research going on - especially cancer research. Especially breast cancer research. I swear sometimes the world is full of research labs papered in breast cancer research papers.

Anyway, this time I don't necessarily agree with this new research. In a ten year study, maybe not all breast cancer patients need an AND (Axillary Node Dissection) if they have a positive sentinel node with their lumpectomy. Why? Because if you are going to have chemo and full breast radiation, they would catch all the cancer cooties and nuke them anyway. Hmmmm.....

An AND can give you lymphedema.... which I have now.... the real reason for skipping this surgery. And who wants additional surgery anyway?

Okay so this study looked at around 900 women who had early stage breast cancer and one or two positive sentinel nodes and then were having chemo, radiation and hormonal therapy. They split them in two groups and followed them for ten years. After that time both groups had similar recurrence rates. This study did not include women who had mastectomies or suspicious or enlarged lymph nodes in a physical exam.

"To make sure that women have the appropriate lymph node surgery, the American Society for Clinical Oncology released guidelines on sentinel lymph node biopsy for people diagnosed with early-stage breast cancer. The guidelines say sentinel lymph node biopsy SHOULD be offered under these circumstances:

• breast cancer in which there is more than one tumor, all of which have formed separately from one another (doctors call these multicentric tumors); these types of breast cancers are rare
• DCIS treated with mastectomy
• women who have previously had breast cancer surgery or axillary lymph node surgery
• women who have been treated before surgery with chemotherapy or another systemic treatment (treatment before surgery is called neoadjuvant treatment)

The guidelines say sentinel node biopsy SHOULD NOT be offered under these circumstances:

• the cancer is 5 cm or larger or locally advanced (the cancer has spread extensively in the breast or to the nearby lymph nodes)
• the cancer is inflammatory breast cancer
• DCIS treated with lumpectomy
• the woman is pregnant

The guidelines also say:

• Women with negative sentinel node biopsies shouldn’t have axillary node surgery.
• Women with one or two positive sentinel nodes who plan to have lumpectomy plus radiation also don’t need axillary node surgery.
• Women who have one or more positive sentinel nodes and plan to have mastectomy with no radiation should be offered axillary node surgery."

Well, I say whoop-di-doo to all this. Why? Because they do not raise the issue of younger women with breast cancer. I was under 50 when I saw diagnosed with breast cancer - otherwise I meet the criteria. And it was my second cancer before the age of 50 (which puts me in a special class of people). 

I think that while these recommendations sound great and I like it when guidelines are updated and progress is made. But I think this research clearly overlooks the group of younger women who should be regarded differently. Often younger women are diagnosed with more aggressive breast cancers than older women. Now you see my concern?

Your Decision, Not Your Doctor's

In years gone by, doctors were regarded as gods. They knew all, were not to be questioned and patients should obey unquestioningly. Those days are gone. Patients are empowered. They learn about their conditions, they question their doctors, and they make their own decisions. They may rely on their doctor's advice but clearly make their decisions.

However, a recent study (because we always need more damn studies) found that doctor preferences for surgery type greatly influenced patient choice in early stage breast cancer surgery.

"Researchers surveyed more than 3,300 women with early stage breast cancer and 349 surgeons who treated them. About 16 percent of the patients had both breasts removed.

Only 4 percent of those whose surgeons heavily favored breast-saving surgery and were most reluctant to remove both breasts had the procedure. That compared to 34 percent of patients whose surgeons were most willing to do the surgery, the study found.

"That difference is huge. Even for a procedure that is very patient-driven, we see that surgeons account for a lot of the variability in the community and those surgeon attitudes really matter in terms of whether a patient does or does not get CPM," said study senior author and professor of medicine Dr. Steven Katz in a University of Michigan news release."

If the reasons given for a bilateral mastectomy are given as "patient peace of mind, avoiding conflict and improved cosmetic outcome", then why are the results so skewed to the surgeon's preferences?

Again, its your body and your decision and not your doctor's

Oncology Anxiety

It doesn't matter how many years out it is but a visit to the oncologist always is uncomfortable. Its unsettling. Its alarming. Its distressing. Its ominous. I can't come up with enough words to describe it. And its today.

I had my annual mammogram back in July and then saw my surgeon. Technically, I am supposed to be followed by my breast surgeon for life after treatment ends. But his office was difficult to schedule with so after a few years, I dumped him. I also dumped my rads onc a few years back. She was pretty useless too. She used to tell me things like I should stop working so my husband could support me since I had had cancer. Not good medical advice.

I was originally supposed to see my oncologist after my mammogram but the surgeon took over. I had a momentary cancer freakout last winter and ended up at my surgeon's office. He told me his office would now start following me after my mammograms and had an appointment with his office scheduled for the same day. So my oncologist asked me if I wanted to see her office on a different date - to spread out cancer follow up appropriately.

Anyway, so I get to go see my onc's NP today. I am still on (or back on) femara for another couple of years. So today I am a little unsettled, alarmed, distressed, etc. You never know when you see an oncologist what they might find....

Damn.