Five Years Plus

{October 29, 2013}   3 Weeks Post

Three weeks out from surgery I am pleased to report that I am doing great. I decided to recount some of the highlights from this time in hopes that it might be interesting to read or helpful to someone else going through this or other major surgery.

Week 1 – Coming Back to my Body

It helped that we knew ahead of time that the first few days after surgery would be challenging. Chuck cleared his schedule to take care of me full time and we had many of our meals prepared by friends and delivered to us at home.

I didn’t sleep much the night in the hospital, I expect because of the trauma and all the drugs. When I got home I slept like a baby for four days straight: waking every two hours at night and then sleeping intermittently all day. I could only lie on my back with pillows under my head and knees. It was too painful to roll to either side, so I would wake up pretty sore. I started gentle stretching to work on range of motion almost immediately. I used some ideas from a video about recovery from breast cancer and also included some spinal movements to relax my aching back.

Mastectomy followed by reconstruction is painful, I’m sure even more so for women who have a double. My core is strong from a consistent Pilates practice over the last five months and this really helped my mobility; even so I needed Chuck to help lift me from lying to sitting for the first couple of days. I had two solid days on painkillers, then went off them cold turkey in an effort to combat constipation. I don’t know why medical doctors don’t address this more and perhaps prescribe a stool softener from the get-go. Too late a friend mentioned to add Magnesium to relax things.

Week 2 – A Reason to Get Up

This may sounds crazy, but we had out of town visitors stay with us at the beginning of the second week. They are very special friends that we really wanted to see and they had given us the option to change their plans at the last minute if need be. As it turns out, this visit gave me the motivation to get out of bed.

The day before they arrived I had what seemed like a lot of activity: watering the plants, rechecking the guest rooms and arranging flowers. Their visit marked my return into life,  that is being awake and up for most of the day, going for short walks outdoors, helping to prepare a meal and drinking a little red wine.

Nine days after surgery our friends departed and I had post-op appointments with both the surgeon and the plastics surgeon. One of my two surgical drains was removed. Day 10 was a day of rest. By the week-end I decided we must get the apples picked. This involved both reaching and ladder climbing, a sure sign that my body was healing. As the week progressed the pain let up considerably and I could begin to roll and lie for short periods on my right side. I upped my yoga practice and stretching, began to bear a little weight with my arms and did some gentle core exercises.

Week 3 – Gaining Strength

This week I focused on gaining stamina. We have a 3-mile forest-meadow walk out our back door which I have been hiking most days. I also began to prepare meals again. By the end of the week I was able to work four hours in the kitchen making applesauce from the apples we had picked the week before. Yum.

On day 16 I finally had my second surgical drain removed. This is an annoying but important contraption, like a tiny soaker hose on the inside of the tissue, and a rubber hose that protruded from my side. This feeds into a larger rubber ball that provides a gentle suction and holds blood or lymph fluid that drains from the surgical site. Early on Chuck sewed me a makeshift bra from ace bandages which featured a pocket to hold and support the dangling ball. He regularly emptied each drain and recorded the quantity it held. The drainage had to reach a minimum of 25cc in 24 hours before being removed. Now I could shower freely and lay for short periods on my left side.

Being able to lay on my left side was my criteria for returning to my Pilates class. This was a challenge for sure but a landmark all the same. That evening Chuck and I had an impromtu dance party in our living room. I also started to go to physical therapy this week for an added support in getting stronger. I am now able to stretch without fear of injuring myself and have nearly regained full range of motion, though there is still quite a lot of stretching pain at the end range of movements of my left arm.


Chuck has been a foundation of consistent, loving support throughout these weeks. There is a certain beauty and intimacy in being so dependent on another and both of us have enjoyed this sweetness.

The support of friends and family is also fundamental to healing. From preparing food and organizing its delivery, to lending me books to read, making visits and calls, sending cards, flowers, inspiration texts and emails, I feel incredibly loved and supported. One couple even let me plan a dinner menu which they prepared and brought, shared with us and then cleaned up.

While my surgeons are both great doctors, in a post-op period without any complications, they are not much involved. I have supplemented my healing with weekly bodywork from my talented and versatile massage therapist. Two days after surgery she did mainly energy work. By the third week I was able to briefly lie on my stomach for some gentle back massage. I also added a lymphatic bodywork session in the second week when I realized my arm was swelling slightly. Not the least to mention that we asked our cleaner to come weekly in the pre and post surgery periods.

This post-op period has certainly been smoother than eight years ago. We knew more what to expect and we prepared well. I have been able to rest and sleep well throughout. Even so, we have had to be adaptable as there have been surprises, like having to have a drain in for over two weeks, Overall I think I went into it stronger physically, mentally and emotionally, in part because I took enough time between the diagnosis and surgery.


{October 8, 2013}   The day of

Today was my surgery. In my preparation, I did hold the hope that this time would be a little easier. And it is in some ways. For one thing, I am so grateful for all the people who are looking after me. Chuck is staying with me all day and all night while I’m in the hospital. I’m so grateful that my daughter Hayley and her Mom stopped by to visit after my surgery and that Orah came by this afternoon to sit with Chuck while I was in recovery. Bodhi is looking after the cats and keeping the home fires stoked for my return. I spoke with my sister Ann, and she’s keeping Beth and Dave informed. Chuck has been texting my status to Luke, Art, and all our dear friends and they in turn have sent messages of loving support. Art is keeping Nic, Zach and Thomas up to date. Vidya kept a candle lit on her healing alter all day. So many others have been praying for me or supporting me in their own spiritual way. All the nurses here at Crouse are angels of healing and caring. And every time a baby is born in the hospital, they play a little lullaby tune. There have been four little bundles of joy delivered while we’ve been here! My doctors did a great job and earlier I was actually able to stand up. I’m holding the balance between pushing myself to recover fast (so I can be discharged tomorrow) and allowing myself to let healing take its own time. I have to walk and pee sometime before I can go home. With any luck, I’ll be home by tomorrow afternoon. Oh, and speaking of luck, my lymph nodes tested negative for disease! Hurray!


{October 3, 2013}   A week away…

It is now less than week away from my surgery date: Tuesday, October 8, 1pm. Certainly it took quite a few appointments, tests and some organization to get to this point. Now it’s taking quite some preparation to get both my home ready and leave behind appropriate plans for the classes I will miss when I’m recovering. I’m balancing this with teaching my current classes and most important, I keep reminding myself, staying healthy. And did I forget to mention – enjoying this absolutely gorgeous weather?!

The surgery planned is a mastectomy followed by the first step of reconstruction – insertion of a tissue expander. I’ll also have a sentinel node dissection, which means a small number of the lymph nodes most likely to carry cancer cells will be taken out for testing. All going well I’ll be in our local Crouse Hospital for just one night.

I had fully intended to keeping a regular account of this second time around the breast cancer journey. I didn’t anticipate the sinking feeling that would hijack my inner world after I returned from the tournament and visit in Vancouver. As that lifted it was back to work and the busy-ness of fall – that is, the fall of perhaps 2000 pears from our trees.

Now I’m feeling remarkably calm. I admit it’s hard to remember so clearly what is ahead and just how painful it was last time. But I also feel confident in my doctors and my ability to heal and move on. I’m practicing keeping the soul searching that easily accompanies this kind of diagnosis to a minimum. I’m aiming to simply live today as best as I can.

Thanks for taking an interest by reading my story. I’ll ask Chuck to update you after the surgery.

{August 10, 2013}   Cancer is not an Emergency

It seems natural that a cancer diagnosis leads to panic. I was not immune to this feeling in the days following my recent diagnosis. I wanted to control the tests I had, the timing of my surgery and have it almost all wrapped up by mid-September, ready to get on with my life.

Meeting with my surgeon last Monday was like a breath a fresh air. “Good to see you”, she said. It was in fact nice to see her, even though I didn’t really want to be sitting in her office again. She deals with breast cancer every day and exudes a matter-of-fact calmness while still maintaining an excitement about the advances in her field. Together we worked out what to do.

Every person and each individual cancer is different. The initial pathology report suggests that mine is not immediately dangerous. I am planning surgery and am waiting to hear when this can be scheduled. In the meantime every appointment takes its toll on my mental health. I feel pretty good most of the time, however, in the early morning hours anxiety hits. Usually discussing my worries with Chuck helps relax me so I can get back to sleep.

Overall I’ve shifted from panic to patience, accepting that each step takes time and trusting that the process will unfold exactly as it should. At times I have glimpses of optimism that we can figure this thing out and I can come through healthier and better than ever.

{August 2, 2013}   Gathering

When I sit quietly I realize how much I miss my mom. She held me in such compassion and acceptance eight years ago – just a year before she died from metastatic breast cancer. I was so touched by this comment from my sister Ann, “Oh my goodness, I am so sorry to hear this news. I can imagine you are devastated to have to face this challenge again, what a blow. All I can say is that if you take the page from your mother’s book and treat it as just another fact of life, something to be met and overcome, you will do OK. Stay grounded my dear, the power to conquer is within you :)”

This was a tough week. A friend and fellow cancer survivor told me “I understand how this news is like a heavy curtain over everything,” which is exactly how I felt in the days after my diagnosis. By Thursday I was agitated. I had made little progress on gathering the information I needed and also learned that my GP would be on vacation next week. I waited nervously to hear whether she could see me before she left. Then tennis (my lessons, a team event, a competitive match) worked its magic. On the court there is no cancer, just me, the ball, movement and play.

This evening everything looks better and I know I will sleep well tonight. My GP came through. She met with Chuck and me this afternoon for a whole hour discussing our initial steps and plans. She is both incredibly smart and down-to-earth – our bridge to the medical world. She knows me and guided me through the process last time and I trust her. She reassured me and took charge. On Monday she will talk to my surgeon, my oncologist and my ob/gyn, making appointments, discussing my priorities and scheduling the next set of tests. Chuck and I walked out of there feeling really cared for and confident that she has my back.

I am so fortunate to be surrounded and held by so many family and friends.  I’m touched by your emails, blog comments and gracious offers of help. I feel very loved, and know that this helps me heal. For now I mainly need to remain quiet and focused as I set to, in the words of my nutritionist, “gathering – first, information from the outer (doctors, tests, research, etc.), then from the inner (the higher self, guides and masters), and finally gather your helpers, your team around you.” You are all members of my team and there may be a time when I need to call upon your offer of help. Thank you to all of you who are holding me in your thoughts and prayers.

{July 31, 2013}   Second Time Around

It is still a shock to receive a cancer diagnosis. Even though it’s happened before.

This time I’m calmer; it’s a world I already know. And it’s easier as I already know doctors I trust and who know me, or tolerate me as the case may be. Chuck is adept at research and only has to study up on what has changed in the past decade. He explained the current biopsy technique to me on the way to that appointment last Thursday and he already knows how to read the Path report I received Monday morning.

Despite my attention to diet, vigilance with my supplement schedule and constant reexamination of the happiness quotient of my life, cancer has appeared in my other breast. What shakes me deeply is realizing that what I have chosen to use to prevent this type of recurrence hasn’t worked.

Last time my diagnosis set off an intense period of severe mania. It made it impossible to sleep or work and even focusing to read or write was challenging. This is actually my most immediate health risk, so I’m keeping things as normal as possible and keeping my energy contained by limiting the conversations I have with others. This is part of the reason behind reactivating Five Years Plus. I can keep family and friends who want to follow my journey up to date. There is also the hope that someone going through the journey the first time might find something helpful here.

Anyway, I am working on getting a plan together without feeling overwhelmed, continuing to work and hopefully going ahead with my trip out West to play Canadian Nationals in a couple of weeks. One of my first steps is to consult with my surgeon to discuss my options and find out her schedule. When I showed up at my appointment today they had booked me with the wrong doctor. Since already having doctors I know is important to me, we turned around and went home. But not before the patient advocate assured me that I didn’t need to worry that cancer would be spreading if I waited until next week. This I know. I thought it was a nice touch though.

It does make me realize I need to get to know my GP’s office staff as it seems best to let them make the referrals.

{August 22, 2010}   Re-imagining Imaging

As my regular readers know in recent blog posts I have been exploring breast imaging issues. I had my first thermography appointment this week and I have to admit, it was a bit anti-climatic after all this build-up. After changing into a lavender colored gown on my top, the appointment started with a health history review and time for questions, after which I sat on a swiveling stool in front of an infrared camera while my practitioner took six pictures from different angles. I was in and out within half and hour. The best part was seeing the colorful images of my breasts displayed on the laptop monitor looking kind of like a topographical map. Although the images are produced instantaneously, they need to be interpreted by a qualified doctor, so I had to wait for my results.

All my research indicates that thermography can indicate the earliest signs of breast cancer, is radiation-free, pain-free and poses no health risks whatsoever. It actually detects the activity of abnormal cells and has the ability to accurately assess younger women with dense breast tissue for whom mammography is notoriously unreliable. Oh by the way, it is also the least expensive screening technology available. So why isn’t it the dominant breast cancer screening modality? Why isn’t it even recommended by most physicians?

Thermography, also known as digital infrared imaging, is based upon the principle that chemical and blood vessel activity in both precancerous and the area surrounding a developing breast cancer is almost always higher than in normal tissues. This activity frequently results in an increase in regional surface temperature of the breast. Thermography uses ultra-sensitive infrared cameras and sophisticated computer software to detect, analyze, and produce high-resolution images of these temperature variations, which may be the earliest signs of breast cancer.

In the race for better imaging spearheaded in the 1970’s thermography showed promise, but was sidelined by the conventional medical establishment by the 1980s. I found several different explanations for this.

  1. Early Mistakes – In Beyond Mammography, Len Saputo recalls that breast thermography became available in the 1960s, before clinical trials of its effectiveness were completed and before there was a clear understanding of how to interpret the images. A relatively high rate of unnecessary surgeries resulted, leading the technology to be “sidelined by mainstream medical practice for several decades”.
  2. Technology improvements – When I asked the technician who performed my thermogram the reason that thermography was not used more often, she replied that the medical infrared imaging cameras and computer technology had improved greatly over the past decade making it much more suitable now for widespread use.
  3. Inappropriate Comparison – According to the American College of Clinical Thermology, when thermography was first explored for breast imaging during the 1970s, it was tested and evaluated as a competitive strategy to mammography. In 1974 a major project on breast screening called the Carolina Breast Cancer Detection Project that included thermography concluded that mammography should become the primary imaging modality. In fact, the two tests are complementary and both have a place in the detection of breast cancer. Mammography is a structural test that looks at the anatomy of the breasts, density changes and lumps, masses and calcifications. Thermography, on the other hand, measures the activity of the tissue by how much heat is generated. Clinical studies show that in women under age 50, thermography alone is more sensitive (better at detecting suspicious tissue) than mammography, finding 90% of cancers vs. only 70% for mammography alone. However the two modalities combined offer 97% sensitive detection of breast cancer!
  4. Insurance Coverage Revoked – Also according to the American College of Clinical Thermology, while thermography’s role in breast imaging was being explored, it was also being used in other diagnostic roles. It became popular to use in court as a visual proof of pain in accident and injury lawsuits. In response, the insurance industry lobby succeeded in removing insurance coverage for thermography in the United States.
  5. Economic/Political Issues – Thermography is inexpensive and because it is inherently safe and doesn’t involve any radiation, requires no regulation or an expensive clinical environment to administer. Screening mammography and the associated follow-up tests (e.g. ultrasound, biopsies) represent an $8 billion industry which might be threatened if thermography was more prominent.
  6. Too Early Detection – Thermograms can pick up changes that precede cancer. When it was first tested on younger women, abnormalities were detected that mammograms couldn’t find. At the time, these were considered “false positives” and led to a mistrust of thermography. It turned out that a large percentage of the women who had these so-called “false positives” developed breast cancer years later. “Thermography’s only ‘error’ was that it was too accurate too early and the results couldn’t be corroborated at the time.” Thermography can provide an early warning signal before tissue actually becomes cancerous. However, if a woman has an abnormal thermogram that no other test can corroborate, the conventional medical establishment still will likely discard it as a “false positive”. Currently there is no protocol (other than surgical removal) in the conventional standard of care for what to do about something that is not cancerous but might become cancer in the future.

What Next?

At the moment there is a resurgence of interest in thermography due to the accumulation of clinical research, improvements in infrared imaging technology and the growing realization that mammography is not an effective option for pre-menopausal women. Thermography could play an important role in the development of a real breast cancer prevention strategy, acting as an early warning system by detecting tissue changes that reflect the early cancerous process. Studies on thermography have demonstrated its ability to warn that this process is underway 8-10 years before any other test can detect it – even before the cells become cancerous. At this early stage, preventive measures such as nutritional supplements, increased exercise and a lifestyle that reduces cellular inflammation and acidification would have time to take effect before cancer ever formed. In addition, thermographic baseline studies are appropriate for women as young as age 20 or 25 whereas harm from the mammogram’s ionizing radiation is cumulative and much worse for younger women.

Robert Kane, a lecturer and thermal imaging interpreter, suggests that the popularization of thermography will have to occur at the grassroots level due to the current political, funding and insurance issues. For my part, I can whole heartedly endorse my first experience of thermography. Three days after my test I received a call from the owner of Advanced Thermal Imaging offering an overview of my results (they had also been mailed to me in a report that morning). I did not realize the undercurrent of stress I had been holding until I heard the words “nothing suspicious”. I was informed that there is “an irregular heat pattern on the left side of my left breast” that although not of concern at this time, should be monitored given my previous history. The fact that there is a way to assess and follow the health of my breast tissue and the lymphatic area on the side where my breast tissue was removed feels very reassuring.

You can find the articles I used to reference this post embedded in the text. I recommend you check them out if you are considering thermography for yourself. A list of approved thermography clinics can be found here. The photo is from the Advanced Thermal Imaging website.

{August 14, 2010}   The D-bate

Prior to my first thermography appointment (in less than a week) I have done a lot of research on imaging and early detection. While learning some fascinating facts on cancer screening and diagnosis, I have begun to question whether the emphasis on detection and diagnosis might completely miss the point. What about preventing cancer in the first place?

I despair at attempting a comprehensive answer which would include proper nutrition, suitable physical exercise, stress and inflammation reduction, avoidance of toxins (e.g. industrial chemicals, pollutants, pesticides, drugs, tobacco smoke, alcohol, and ionizing radiation), a healthy mental attitude, nourishing family and social relationships and beliefs (religious or spiritual) that connect us to something larger than ourselves. The prospect of trying to comprehend and apply all of this is almost enough to send me scampering back to the straightforward recommendations of my doctors and the seeming certainty of the Standard of Care.

This week I want to focus attention on the debate on vitamin D. There is promising evidence that it has a role in the prevention and treatment of breast cancer and other diseases, but the American Cancer Society and the National Cancer Institute do not currently recommend vitamin D supplements. Beyond a basic multivitamin, many people do not regularly take supplements. There is a common belief that “if we eat properly we will get everything we need” and the conventional medical system has downplayed the importance of supplements. So what is the evidence for and against taking vitamin D supplements?

The case for vitamin D supplementation

Vitamin D is a pro-hormone that influences many genes. Proper levels of vitamin D have been linked to improved muscle strength, proper immune function, reduced inflammation and absorption of calcium and phosphate required for bone health. Our skin produces Vitamin D when exposed to sunlight. Today about half the adults in developed countries have deficient levels of vitamin D probably due to lower exposure to unscreened sunlight. The role of Vitamin D in cancer prevention first became apparent in the 1990s through geographic correlation studies showing that individuals living in southern latitudes have lower incidence and death rates from cancer. In the laboratory Vitamin D slows the growth and increases the differentiation and death of cancer cells. In a four year randomized clinical trial of 1200 healthy post-menopausal women found that women taking calcium (1400-1500 mg) and Vitamin D (1100IU) together had a 60 percent lower incidence of cancer overall than the women taking a placebo. A 2009 article published in the Annals of Epidemiology concluded that if the population at large raised levels of Vitamin D to optimum levels, 58,000 new cases of breast cancer and 49,000 new cases of colorectal cancer could be prevented annually and ¾ of all deaths from these two diseases could be avoided. Grassroots Heath (a organization of scientists promoting public health) published a Vitamin D call to action statement and posted a video calling for increased research and stating that delays in encouraging daily supplementation of Vitamin D3 of 2000 IU per day is leading to a great deal of unnecessary loss of life.

The case against vitamin D supplementation

Much of the evidence sited above comes from observational studies (based on questionnaires) that are inherently inaccurate. The one randomized clinical trial sited above was focused on bone health, not cancer prevention, and did not test the effect of vitamin D without calcium. The National Cancer Institute’s summary of the direction of Vitamin D research in the last 20 years concludes that evidence for Vitamin D’s benefits is “limited and inconsistent”. Vitamin D for breast cancer prevention is not in the American Cancer Society summary of current and proposed research on breast cancer. The Vitamin D Council suggests that the lack of research may be because Vitamin D is simply too cheap. “Therefore, the idea that [vitamin D] could help breast cancer offered no financial incentive to drug companies or researchers hoping to discover a drug they could patent.”

So what do I think?

I have my doubts about any magic bullet for tricky diseases like cancer and the compelling figures given are undermined by the deficiencies of the current research. But given that there is no harm caused by testing vitamin D levels and supplementing at 2000 IU per day, it seems like a no-brainer to do it.

I have my vitamin D levels tested regularly via the 25 hydroxy vitamin D blood test and have taken vitamin D3 supplements since I was first diagnosed. My results have never been dangerously low, but they have regularly been below the recommended 40-80 ng/ml. When doubling my daily supplement didn’t significantly raise my blood serum levels of vitamin D, my nutritionist recommended that I use a form that includes isoflavones to help the absorption. She told me that some people are genetically predisposed to have lower vitamin D levels. It’s shocking to think that insufficient levels of vitamin D might be related to both my mother’s and my own breast cancer.

I believe that taking dietary supplements (vitamins, minerals, probiotics, enzymes, herbs and other compounds that detoxify and support the immune system and certain organs) is one of the easiest things we can do to improve our health and help prevent disease, yes, even cancer. I consult a nutritionist 3 to 4 times each year to help me refine my eating and modify my supplement and dosage schedule to suit my changing needs. Currently I take 16 different supplements every day. I think it’s very helpful to have professional help in deciding on what to take. Our local health food store Natur-tyme offers free mini-consultations that can help people start on a supplement program.

In the nearly six years I have regularly taken supplements I have rarely been sick, my moods have continued to stabilize and I have less muscular and joint pain in my body. My massage therapist noticed that over time my body tissue has become more pliable and hydrated. Granted, supplements are not the only healing modality I have used and thus I cannot say how much is one thing and how much another. As the D-bate goes on, I take the tiny pill each morning, test my blood levels each year, and gently expose my skin to the sun whenever our upstate New York weather allows.

{August 1, 2010}   What am I Missing?

Last week (To Beam or Not to Beam) I discussed the pros and cons as well as my thoughts and feelings about regular breast screenings using mammogram, MRI or thermogram. This week I had the opportunity to discuss this topic with two prominent doctors in the field of medical imaging at a social occasion. They understood my reluctance to continue to subject my breast to the ionizing radiation of mammograms and felt that an MRI was the alternative of choice for me, as it generates a comprehensive picture with radio waves which are not harmful. They were not supportive of thermography because in their opinion, the image produced is just not detailed enough and that “it would be a pity if you missed something.” This got me thinking, just what might be missed if I choose to monitor my remaining breast with thermography instead of mammograms and/or MRIs?”

Mammography is the standard breast cancer screening technique and is used to detect both invasive and non-invasive (known as in situ) breast cancers. It works by passing x-rays through the breast onto a sensor to create an image. The manner in which breast tissue passes or absorbs the x-rays determines what the radiologist sees on the mammogram.

When reading a mammogram a radiologist looks for shadows, distortions, tissue density, masses and tiny specks of calcium deposits called microcalcifications. Although microcalcifications are not cancerous or dangerous in themselves, they indicate the possible presence of cancer cells contained within the milk ducts, called ductal carcinoma in situ (DCIS). The incidence of DCIS increased rapidly through the 1980s and 1990s, primarily a result of the increased use of screening mammography. In 2001 DCIS accounted for about 19 percent of all cancers found compared to less than 4 percent prior to 1984. The diagram on the left, from an article by Dr. Susan Love, shows the breast duct and tubules and a cross-section of a duct demonstrating DCIS.

Magnetic Resonance Imaging (MRI) images are formed by passing high intensity radio waves through breast or other tissue in the presence of an extremely strong magnetic field. MRIs are more detailed and sensitive than mammograms and allow the radiologist to see indications of in situ cancer cells themselves. Recent studies suggest MRI may be better than mammography for finding the more dangerous DCIS lesions which might someday become invasive cancers. MRI is also better at imaging dense breast tissue, more common in younger, premenopausal woman like myself. Earlier this year, the American Cancer Society recommended that certain high risk women should add MRI to their screening regimen.

If a radiologist reading a mammogram or MRI finds something that looks suspicious in the image, he or she may recommend further tests or monitoring, or recommend a biopsy. In themselves imaging methods can only indicate the possible presence of disease; microscopic examination of the tissue by a pathologist is the only way a diagnosis is made. While it does make logical sense to find cancer at this early, easily curable stage, it comes with certain costs. Both imaging methods are subject to false positives leading to biopsies that determine that cancer is indeed not present.  If DCIS is found, there is pressure to undergo considerable treatments that may be harmful, even though DCIS might never progress to invasive cancer.

After biopsied DCIS cells are examined microscopically, they are categorized as either “high-grade” (likely to become invasive) or “non high-grade” (likely not to cause harm). I was surprised to learn this, as I had frequently read that there is no way to determine which abnormal cells will progress beyond the in situ condition to become invasive versus those which will remain harmless. The thing is, there is not 100 percent certainty that a non-high grade DCIS will not become invasive, so the recommended treatment for all DCIS is lumpectomy and radiation (or if it is widespread, mastectomy). Five years of hormonal treatment may also be recommended. Since DCIS is very curable, with 98 percent of women surviving, it is debatable whether the benefits from radiation and/or tamoxifen outweigh the associated risks, some of which are life threatening. In fact, there is considerable controversy surrounding the treatment of DCIS, in part because for so many women it would never cause any harm even without treatment.

I am not suggesting it is better to wait until breast cancer is in a later stage to find and/or treat it. But I do question the emphasis on finding the signs of cancer earlier and earlier and then applying treatments that cause harm (biopsies, surgery, radiation treatments, etc.) for conditions that may not ever develop into invasive cancer. And I do worry that perhaps the cumulative ionizing radiation from mammograms actually contributes to the development of cancer, especially in women like myself who are under 50.

Wouldn’t it be great if imaging could provide an indication of the health of breast and other tissue in addition to searching for signs of disease? All screening methods today are about finding disease rather than assessing tissue health, but thermography has potential. It measures the heat produced as a metabolic by-product. Perhaps one day we can detect generalized inflammation (not just tumors) which might be addressed by adjusting nutrition, supplements and/or lifestyle before disease occurs. While we wait for that kind of technology, I rely upon blood work to give me an indication of overall health. I use the absence of blood tumor factors, manual breast examination and imaging to establish that nothing abnormal is going on.

If I had to choose between mammography or MRI for breast screening, I guess I would go with the MRI. Having had invasive breast cancer and family history, I fall into a category of risk that would probably result in my insurance company covering the cost of the test. However, despite the recommendations of my doctor friends and my oncologist, I am still reluctant. This may sound strange, but having faced breast cancer already, I am not afraid to miss something small, like the presence of DCIS. When I take a step back from the current cultural obsession with early detection, I find the whole emphasis of searching for and eradicating disease antithetical to the way I view my health.

I realize that conventional medicine is not in support of thermography, but to me, as a health care consumer, it makes sense. First, it does no harm because it works by passively measuring the heat produced within tissues, rather than bombarding the body with radiation. If my thermogram, blood work or manual breast examinations show anything worrisome, I can follow up with further imaging through conventional means (i.e. MRI). I reason that:

  1. My careful attention to nutrition, supplements, exercise and other alternative practices will keep my tissues healthy.
  2. The combination of three screening techniques (thermography, blood work and manual self-exams) gives me a very good chance of catching anything deleterious early enough to treat it.
  3. There is a high percentage chance that anything missed by such screening is benign or non-invasive (like DCIS).

For me it’s a trade-off. The small increased risk of missing something important is, in my humble opinion, worth it. I will avoid the potential worry and discomfort of false positives and unnecessary biopsies associated with more sensitive imaging. Last but not least, thermography is in sync with my health priorities and principles (set out in Baby Steps). Throughout my cancer treatment and healing I have chosen a path less traveled that supports the health of my entire being. I want to take this path for monitoring the health of my remaining breast. For this reason I have booked an appointment for my first breast thermogram on August 17. I’m excited to have taken this step as it is something I’ve been thinking about for over five years. I will let you know my thoughts as I actually have my thermogram and continue my research and look forward to hearing your feedback on the issues I am raising.

The amount of material easily accessible on these topics is incredible. At times this week I felt buried in on-line articles, unable to remember where I had read this or that.  I hope you take the time to click on today’s links. The articles I chose to reference are all scientific, trustworthy and accessible!

{July 24, 2010}   To Beam or not to Beam

My annual breast screening appointment date is coming up in September. In Between Two Worlds, I reported that I’d already decided not to have another mammogram. At that time I agreed with my oncologist’s urging to have an MRI instead. Almost immediately I felt uncomfortable with that decision and now I don’t know what to think or what I’ll do as this deadline approaches.

First, let me explain my dilemma with respect to having another mammogram. Having already had breast cancer, I have a higher than average risk of getting it again. An annual mammogram is the “gold standard” for detecting breast cancer at an early stage. Therefore, I should be happy to have one annually (and my oncologist certainly holds this position). However, mammogram machines deliver a powerful x-ray, according to one source perhaps 1000 times stronger than a chest x-ray, sending ionizing radiation, a known carcinogen, into the breast tissue. Since mammograms have difficulty detecting cancer in dense breast tissues, I am often subjected to additional radiation as the radiologist works conscientiously to take extra views of my breast in the hopes of not missing anything. Having already demonstrated the predisposition to develop cancer in the breast, I reason that it is unwise for me to continue to expose myself to known carcinogens. Experts think that in part, it is the cumulative exposure to radiation over a lifetime that increases the risk of cancer from that cause. Therefore, it seems to me that any time is the right time to stop such exposure.

Even though annual mammograms are considered the Standard of Care, as I recounted in The Ninth Life, mammograms are by no means fool proof. The false positive rate is significant, 95 percent of women who are called back for additional screening do not have cancer. Two out of every three women who end up being referred for biopsies do not have cancer. The false negative rate is also noteworthy, with about one in every five cancers missed by mammograms.

So what about the MRI? An MRI makes a clearer, more detailed image than a mammogram, so it should be a better screening tool, right? An MRI doesn’t use x-rays. Rather, the patient is given a contrasting agent (like gadolinium) by injection and then put into a powerful magnetic field and probed with radio frequencies. There is no scientific evidence that these frequencies of electromagnetic radiation cause cancer or are otherwise harmful. The contrasting agent can cause reactions in persons with kidney problems, but otherwise, this test seems less deleterious than the mammogram, although it is lengthier, more expensive and more uncomfortable in my opinion. Unfortunately it also increases the risk of false positives and could lead to unnecessary biopsies and the associated anxiety, cost, time and discomfort.

This is at the heart of my distress as I approach the crossroads in September. I don’t want to subject myself to additional carcinogenic radiation through a mammogram. Neither do I want to expose myself to the anxiety of an MRI which is a stressful test in itself and runs a greater risk of a false positive requiring a biopsy to disambiguate. I am especially sensitive to anxiety because of my propensity toward mood and sleep issues (as I reported in Good Night Sweet Princess). In fact, after having a colonoscopy a few years ago at the recommendation of my OB/GYN and GP, it took me about three months to reestablish my equilibrium. I treat the havoc in my life that results from anxiety as a very real side effect of such a test.

Which leaves me where? Do I want my remaining breast to go unmonitored? With my history, completely opting out of breast screening seems like a foolhardy idea. Thankfully there are three options which do not have any negative health effects. The first is the old standby – manual self examination. This is actually the way I discovered my cancer, so even though it is not a method of early detection, I believe it is still a worthwhile practice. If I find something manually, I can have a sonogram, although at that point a mammogram would also be recommended. A sonogram, also known as ultrasound is quick, not uncomfortable, requires no contrasting agent or ionizing radiation. It creates an image which can distinguish between a solid tumor and fluid filled cyst. The third harm-free alternative is a relatively new imaging method is thermography.

Thermography measures the amount of heat emitted by the body, in this case the breast tissue. Abnormal cells are usually hotter because they require a greater blood supply and therefore show up on the color image that is formed. The upsides are that it is a comfortable procedure with no negative side effects. It also seems that it can detect abnormalities in the breast tissue before a mammogram and has a lower false positive rate. The downsides are that although a thermogram is relatively inexpensive, it is not currently covered by medical insurance and is therefore an out of pocket expense for the patient. Second, thermography is unregulated so one has to be careful to use a reputable provider. Fortunately we have a provider who visits a nearby office monthly. Finally, the vast majority of radiologists and oncologists are not trained in this technology, and will not make recommendations based on its results. Therefore, the thermogram is sent to a center to be read by properly trained radiologists and will not be read by the radiologist who has followed my case since 2005.

As I said in Baby Steps, my first principle in making decisions about my health and healthcare is “First, do no harm.” For this reason, I’m reluctant to have another mammogram or an MRI for purely screening purposes. There is more research on this that I want to understand fully and I will report on what I discover in future blogs. In the meantime, I do intend to have a series of two thermograms to establish a baseline that any future changes in my breast tissue can be measured against. The thermogram satisfies my final principle: “if a treatment causes no harm whatsoever and I want to try it, then it is fine, even if there isn’t conclusive scientific evidence for its effect on cancer.”

I’m not 100% sure of any of this and I am certainly not making recommendations about what anyone else should do. For now, it’s what feels right for me and I’m being consistent with my principles and priorities in making my own health choices.

et cetera