ASCO publishes guidelines on survivorship -- finally?


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This week the American Society of Clinical Oncology (ASCO) issued three evidence-based guidelines for cancer survivorship. You can read them here. ASCO offers oncologists and others in the healthcare community recommendations on a vast array of issues. With these three added, there are now four guidelines concerning survivorship. The three areas they address in the new guidelines are neuropathy, fatigue and depression, and anxiety. Not that I want to sound ungrateful, but it's about time.

First, in regard to peripheral neuropathy. In the summer issue of CURE you will read my article on peripheral neuropathy and how sufferers are faced with a very debilitating long-term and late effect for which there is little effective treatment. In fact, the press release about the guidelines issued by ASCO says they "provide evidence-based recommendations for prevention and treatment of chemotherapy-based peripheral neuropathy."

Then, in the guidelines themselves, they say that due to "lack of high-quality, consistent evidence, no established agents are recommended for the prevention of CIPN in people with cancer undergoing treatment with neurotoxic agents." This means that they don't have any ways to stop CPIN from occurring – yet. There are some new ideas in the works but nothing has been approved.

For treatment, the guidelines say clinicians can offer Cymbalta (duloxetine), and then gives a list of other options that have shown some efficacy.

Ultimately, there is nothing new here. But what is new is that it is here. Getting ASCO to post guidelines, even if they don't give us anything helpful is a start in recognizing that survivors have a number of issues that impact our lives significantly, or as one professional says, we don't have cancer anymore but cancer has us.

In regard to fatigue, the second guideline they add, the recommendation is that survivors be screened for fatigue from point of diagnosis onward.

In addition, the guideline says that "given the multiple factors contributing to post-treatment fatigue, interventions should be tailored to each patient's specific needs. In particular, a number of nonpharmacologic treatment approaches have demonstrated efficacy in cancer survivors."

Read "exercise" there. The hopeful part of this guideline is that it will lead our cancer professionals to recognize that they need to know where to refer us to get help with fatigue. I am a major proponent of rehabilitation services for many of these needs as the rehab folks understand not only the physical but also the emotional changes that may need rehab.

For the third and final new guideline, Screening, Assessment, and Care of Anxiety and Depressive Symptoms in Adults With Cancer, the ASCO pros adapted a Pan-Canadian Practice Guideline. In general the guideline says cancer patients "be evaluated for symptoms of depression and anxiety at periodic times across the trajectory of care." Do we see a pattern here?

This evaluation should use good measures and different approaches depending on the levels of symptoms. It concludes with an overview of what happens when there is failure to identify and treat anxiety and depression. We feel rotten and have a much-reduced quality of life.

The options for care given with these guidelines are really thin, and my recommendation is that they use the Oncology Nursing Society Putting Evidence into Practice which seems to be ahead of ASCO in recommending interventions for each one of these.

Once again, the nurses beat the docs to the punch.

Overall these guidelines are a disappointment. They don't give us anything new and the disclaimer that runs with each one is double the length of the guideline. Come on ASCO, you can do better than this. We now have four, count them, four survivorship guidelines. The first one posted by ASCO in 2013 had to do with fertility and said oncologists should talk with patients of childbearing age about the impact of treatment and their options for preserving fertility.

A study late in the year says oncologists are not doing a great job of that.

Cancer survivors are growing in numbers and we would like to think that someone is paying attention to our quality of life and not just patting themselves on the back for keeping us alive. Fatigue, depression, anxiety, neuropathy and many other issues may follow us after treatment ends. It's time we put some energy into researching them and coming up with some real answers.


Inflammation and fatigue


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We now have another clue about why we are so tired during chemotherapy and for months afterward.

It's one of those "Dem Bones" issues. You know the old spiritual that says, "Toe bone connected to the foot bone, foot bone connected to the heel bone, heel bone connected to the ankle bone," and so on.

In this case, according to researchers at the Winship Cancer Institute at Emory University in Atlanta, Georgia, chemotherapy is connected to an epigenetic imprint in the DNA of breast cancer patients' blood and the imprint is connected to inflammation and inflammation is connected to fatigue.

The changes to the DNA are very complex, which I don't want to explain to you when I don't understand them. Suffice it to say that they are finding that these changes are in the DNA at six months post chemotherapy.

If you want to read the details you can find them in the journal Brain, Behavior, and Immunity. More researchers than ever are focusing on inflammation and its relationship to cancer. Ironically, this study appeared just when we were preparing the spring issue to go to press, and in it you will find a feature on inflammation as it relates to cancer and recurrence of cancer.

In the article we add another line to Dem Bones as we look at the impact of sress on inflammation. Stress does lots of nasty stuff in the body, including, perhaps, suppressing the immune system and encouraging inflammation.

So what does this all mean for those who cannot get off the couch because they are so fatigued, which, in turn, causes stress because we need to get off the couch to live. Well, it's time to take some control and find ways to fit exercise into our lives. I know, I know, you are tired of hearing it, but you will have to plug your ears if you want it to go away.

I am not talking about getting up and doing a 5 k. Just lie there and do leg lifts or get small weights and use those to get your oxygen level up. Get your blood pumping, which you can also do by raising and lowering your arms. Yoga has evidence that it helps. Exercise and other stress reducing activities also impact your chances of recurrence.

There are also inflammation reducing foods, spices and movement just as there are those foods that increase inflammation.

Check out what survivor and healthy living guru Kris Carr says about inflammation. Her response to a cancer diagnosis was to become a nutritionist.

No one thing is the answer to fatigue, but even small changes show our body we love it. So to wrap up . . .

Chemotherapy is connected to epigenetic changes in the DNA and they are connected to inflammation and it is connected to fatigue/ conversely less stress is connected to less inflammation and exercise is connected to less inflammation because it reduces stress.

No one said it would be easy.


The Little Couple has cancer


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OK, I admit that I like a reality show called The Little Couple. I happened on it one night last year and was struck by how authentic Bill Klein and Jen Arnold came across. The premise of the show is to take part in the lives of a husband, Bill Klein, and wife, Jen Arnold, MD, as they marry, build their dream home in Houston and grow their family with two adopted children from abroad. And they happen to be little people, the polite term for those who suffer from some form of dwarfism.

I was impressed with Bill and Jen and their efforts to show the world that little people are just like everyone else. I don't know their goals for allowing cameras in their lives, as it has to be incredibly intrusive, but with this show it works. As a neonatologist, Jen Arnold is a working physician, and Bill Klein is a businessman. Then, as anyone who follows the show knows, while in India to pick up their adopted daughter, Zoey, Jen begins to bleed. A call home to her gyn results in a speedy trip back to the states where she is met by her mom and dad at the airport and then begins a series of tests to understand what is going on.

It's cancer. And quickly, the reality TV show became almost too real for those of us who have been there. As the build up to the show where we learn the details of Jen's cancer, I am sure most cancer survivors were saying, "It's cancer. We know the signs." Jen was diagnosed with gestational trophoblastic neoplasm, a very rare cancer that occurs in the tissue remaining after a failed pregnancy.

There were details not on the show but in the news about her treatment that I am not sure have yet occurred. For example, according to news accounts, chemo didn't seem to work at first, so they did a complete hysterectomy. Since, on this week's episode we saw Jen getting chemo, I don't know if the surgery is to come or if they already completed it and have moved on. At any rate, I am glad that Jen continues to affirm many details of the cancer experience.

For example, when she said the side effects of chemo seemed to be cumulative, it bothered me that even now, for a professional in the medical field, she still was not told that one fact. Chemo side effects are bad and they get worse with more treatment.

She has addressed the fatigue, which no one can tell you about until you experience it. I am glad we got to go with her to look for a wig and saw the quality she found at a shop that caters to those going through chemotherapy. We have such a shop here and it makes such a difference. Boy have wigs gotten better since the nasty things I wore in 1986.

Mostly, I am glad they decided to take the camera into chemotherapy with her and not gloss over it in the story line. I am sure the producers have had some serious talks about how much is too much when the other story line at home is the beautiful little Zoey with her big eyes, seriously smart and tender big brother Will – and a father who is clearly terrified. I applaud them for keeping the reality in reality television. Those who are newly diagnosed will find a friend in Jen as they struggle with the same issues. I just hope they let her continue to talk about the changes cancer has made in her new family – like living with the fear of recurrence -- and then celebrating when the cancer stays gone.

Once again cancer reminds us that it doesn't matter who you are and what you are doing. Jen, there are many who are with you and we send you our collective strength for the journey ahead.



Educating about cancer


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A few weeks ago I was asked to speak on a panel about survivorship, so I called on my friends Isabel, Carrie and Suzan to see if they could spend a little time telling some folks about what it's like to do cancer.

The panel was for McKesson Specialty Health, the company that publishes CURE, which does a wonderful job educating its employees and even its customers about cancer.

The event is called Oncology University, and new employees and old timers are given the option to come and learn more about the disease that they spend their day addressing. These folks could be in any of a number of positions, most of which will never put them in contact with the people who ultimately benefit from their work day – cancer patients.

I felt that Suzan, Isabel and Carrie would offer a number of details that I couldn't, so I invited them to join me. Isabel is a head and neck survivor whose salivary gland cancer was treated with surgery alone. Part of her story is living with chronic pain and the steps she has taken to get off opiates, which include acupuncture, exercise and living with pain above what many of us would tolerate. Suzan and Carrie have similar stories, both are metastatic breast cancer patients and both have one child. Suzan has been living with metastatic disease for a few more years than Carrie, so she spent some time giving her advice on the side effects of the drug she had just started taking. Carrie wrote about dealing with the the side effects in her last blog for us, and I was glad that Suzan had told her to power through it because the drug is showing good efficacy in treating metastatic disease.

Carrie shared what it was like to have a 2-year-old, Henry, whom she and her husband adopted the same month she found out her cancer was back. She was diagnosed initially at 29.

The audience was great, listening and asking good questions. It was hard not to keep reminding myself that Carrie and Suzan had metastatic disease, something they reminded the audience of frequently. As Carrie said, "It's important to remember we are LIVING with cancer. We look well to the average person, and to our friends, who were around when we were initially diagnosed and who now don't know what to do with us."

It's a great idea to have the people in cancer listen to the people with cancer. Let us know if you want us to come to your place with our dog and pony show.

I had a chance to see Carrie again last weekend when she and her mom and Henry came by for a visit. On the day of the panel, I had overheard Suzan, whose daughter is now 11, and Carrie talk about their negotiations with the powers that be. Suzan said something about how many years she needed to see her daughter graduate high school. Carrie said, "I need 15 years."

Henry is a beautiful little boy with a head of blonde hair. And I know it's been said often that adopted children look like their parents, but Henry really does look like Carrie down to the dimples in their cheeks.

It makes me mad that what other parents take for granted my two friends have to look at as far from a done deal. They shouldn't have to negotiate for the years they will have with their children. They should have more options.

Selfishly, I want more money for research into metastatic breast cancer so my friends, and all the other women who are having to barter for years can just look forward to the future, not wonder if they have one.


All dogs go to heaven


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I was reminded last week of the value of pet therapy when I lost my sweet labradoodle Edith (Edie). What was to have been surgery to remove some kind of blockage in her stomach, which we all decided was a sock, turned into an inoperable condition from which she could not recover.

I haven't cried that hard in years, and it reminded me just how much of a family member Edie was. She was my girl, my buddy, my confidant. And more than anything she was the source of unconditional love of the kind you only get from your mother -- if you were lucky.

I have always had dogs, both growing up and in my adult life. My Irish Setter Erin lived with me through my 20s and was such a great guard dog that the plumber came, fixed the sink and didn't know there was a dog in the house until the plumber came out from under the sink and met Erin eye level for a big sloppy kiss. I guess that was her way of saying, "I got my eye on you."

I rescued Edie three years ago as a 1-year-old who was full of life and fun. She had never been abused and was ready to get on with the business of living. I found out she was an F1 labradoodle at the dog park when one of the folks in the casual discussion group I was standing in asked me what kind of dog she was.

I said she was a labradoodle. Well, he snorted, "I don't think so,"as he pointed toward a huge black dog (His). "That's a labradoodle." OK, so what, I thought, I really don't care. That's what they said she was on the site where I found her. I learned later that he had a designer labradoodle, and I had the first iteration, meaning one or the other of Edie's parents was a poodle and the other a Labrador. Edie could care less. She just wanted to win the ongoing dog chase where all the dogs chased her. She would collapse on the back seat on the way home, deliriously happy that once again she had outrun the crowd.

The studies that have come out on the power of our animal friends have been compelling evidence that we all need one. Heart attack patients who owned pets lived longer than those who didn't, petting your dog lowers your blood pressure and increases oxytocin.

Dogs are helping with veterans who have PTSD and doing lots of other good stuff that you can read about at the Research Center for Human/Animal Interaction. And anyone who has loved a dog will tell you that they know when you are upset.

Edie was not allowed on the bed, but on those nights when I was struggling with something, I could always count on turning over to see her big brown eyes looking at me. "It's OK, Mom, I am here. Go back to sleep," they said. And I did.

Rest in Peace, Edie.



Chemobrain and late effects of childhood cancer


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As many of you know we are running a story in the current magazine about ways to combat chemobrain. (You can read the article here.) I talked about Lumosity and its effectiveness and disclosed that it did have a cost. I am sure many of you have seen their ads around town and on the tube.

We got a letter from a mom who is caretaker for her grown son who just finished a bout of cancer. He has chemobrain and the cost of Lumosity is really not an option – even less than $100 a year. I know many of you can sympathize with her. She asked if they had a free version, but, of course, they don't. So, I did a little sleuthing and found some other brain training programs that are free and may help. Just put free brain training in your search engine and you will find a number of companies that don't charge. Determining which of the programs works best for you will be trial and error.

There are also a number of apps that have free games to play that are definitely brain games. The ones I have tried are all free but have enticements to get you to buy levels or help – or, in what I think is really maddening – to get rid of the ads that pop up regularly. I have dumped more than one of those. I like an app called Four Pictures, One Word that shows you four pictures that are somehow related and you have to figure out the word. Many of these can be played on your phone and keep your brain active while you are just sitting around.

Shelli Kesler, PhD, an assistant professor of psychiatry and behavioral sciences at Stanford University in Stanford, Calif., has published a small book on the topic, Improving Cognitive Function After Cancer, which can be found on Amazon for around $9. She offers some basic ways to compensate and tools to begin, such as a good message system on your phone to remind you when something needs to be done. She recommends setting routines and using self-talk to encourage recall as well as repeating what has been said to you. So if a doctor says take two pills a day and don't forget to exercise, then you say, "What I heard you say was that I take two pills a day and I exercise every day."

Another good book for building the brain is Make Your Brain Smarter by Sandra Bond Chapman, PhD, chief director at the center for Brain Health at the University of Texas at Dallas. Chapman goes into depth discussing the brain and how it works and suggests that more is not better – less when looked at deeply is better. Sounds like thinking to me. It is also available for under $20 on Amazon.

On Monday, January 27, I'll be discussing these and other options with Maryann Makekau and Rob Harris on the Because Hope Matters Talk Radio Show at 7 p.m. ET. Join us for some lively discussion around ways to overcome chemobrain. We'll also be talking about another topic in the current issue, that of the late effects of childhood cancer treatment. It's the adult survivors of childhood cancer that have given us the best research in areas of late effects. And we are gaining more and more information on what happens when children who had had cancer grow up.

Listen, call in with your comments because someone else will have the same question.


Dying online


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There has been quite the outcry in the past two days about the choice of breast cancer patient Lisa Adams to tweet and blog her dance with death. I don't say dance lightly because Lisa is a writer, and to read her blog is to see her take the intricate steps required in life's final tango to sidestep the pain of her numerous metastases.

I haven't seen her tweets, but I can imagine that someone with such control of the language is able to say a lot in 140 characters.

Whether blog or tweet, it's her decision to die so publicly that prompted writer and columnist Emma Keller to take her to task in a column on Jan. 8 in the Guardian. Keller, who has also had a run with cancer, which she has also blogged about, is somehow offended that Adams is dying so publicly. When I read Keller's column, I admit that I had a fairly strong reaction to it: So where is it written that there are rules on how to die?

Adams concedes that tweeting helps with the pain because it gets her mind off the pain. And she is unapologetic that she doesn't go on and on about her children in the way that, it seems, Keller wants her to. I think I can see where Adams is coming from. Dying is a singular journey, and right now it's between her and her body to make each day count.

If it had stopped there, it wouldn't have become the firestorm that it did. Personally, I chalk it up to someone who has had breast cancer reading her worst fear – that her cancer might come back and she might end up where Adams is. It's the explanation for calling herself "embarrassed at my voyeurism." And in the next sentence she asks if there shouldn't be boundaries for this kind of experience, and in that I read, "please go and die quietly so I don't have to look at what I might have to endure." Then she asks again, "Why am I so obsessed?"

She is obsessed for the same reason we all are with death. We want to know how to do it. And for women with metastatic breast cancer, all the books from experts still aren't enough to figure out their own final turns if they know it's in their future. What Adams has done is offer women who may be facing the same fate some options, which takes a lot of courage if you ask me.

Keller's husband Bill also had to join the discussion. He jumps in with his own column about the joys of recognizing when it's time and letting go as his father-in-law did.

He waxes prolific on going quietly into the night when your time comes and accepting the inevitable.

Come on, Bill. Who are you to tell someone how to die? And to compare an elderly man at the end of his life with a young mother is just plain crazy. But even then I tell myself to shut up. Because when it is all said and done, unless you have died before your time and left small children when your life's wish is to raise them – well you have no right to say anything. If it upsets you, stop reading.

For me, I will now follow Adams until her death, watching a brave woman who has found a way to stay with us until the very last minute, which many people want to do. And in her blogs and tweets she has left a roadmap for the women who will come after her. If you don't believe me, read the comments that follow her blogs.

And one last thing. Shame on the Guardian for taking down Keller's commentary.


Focus on how well patients live instead of how long


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Mea Culpa--I said in my first blog that there were no podium presentations on survivorship at the San Antonio Breast Cancer Symposium. Oops. I did read the program thoroughly but managed to miss the one session on survivorship on Friday morning by Lesley Fallowfield, a professor of psycho-oncology and director of Sussex Health Outcomes Research & Education in Cancer at Brighton and Sussex Medical School at the University of Sussex in England.

The content of the presentation was an overview of the issues of survivors, i.e. fatigue, lymphedema, night sweats, cognitive issues, hormonal issues, economic issues, and the overall distress of coping. One slide said there is new attention paid to how well patients live in addition to how long they live. She also confirmed that integrative therapies do work, including yoga, cognitive behavior therapy, aroma therapy and massage, visualization, expressive writing, and art and music therapy.

Perhaps the most pointed idea in those slides was information on mindfulness-based stress reduction. This issue has been one that I have touted for years, ever since Barbara Anderson's study with breast cancer survivors and mindfulness-based stress reduction. In her Stress and Immunity Breast Cancer Project, she showed that a psychological intervention provided to newly diagnosed breast cancer patients reduced the risk for recurrence and death from breast cancer.

Fallowfield also noted that most of the changes in survivorship have been in early-stage breast cancer, not metastatic breast cancer.

Fallowfield told me she was really surprised by how many physicians came to the talk and stopped her later to chat. "The hall was virtually full, but many people stopped me throughout the day to either congratulate me, ask for further contact or invite me to speak in their country." She had expected patient advocates but found it heartening to find so many interested oncologists.

Let's hope they take it home and apply it to their patients.

How many of you are in treatment where there is a strong survivorship program? Let me know.


Metastatic disease demanding more attention


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A number of the presentations at this year's San Antonio Breast Cancer Symposium addressed metastatic breast cancer – when the disease has left the breast and moved to other parts of the body.

What used to be an immediate death sentence has been redefined in the past decade as a potentially chronic disease – depending on a number of factors, the estrogen status, the HER2 status, where the cancer traveled and how treatable it is.

Today an estimated 30 percent of women diagnosed with early-stage breast cancer will have recurrence – anywhere from a few months to years. And those who are fighting for more research dollars and more respect for this community quickly point out that, while some like to encourage women to see themselves as long-term survivors, the majority still die within a few years of their cancer becoming metastatic.

Breast cancer most often spreads to the liver, lung, bones or in some instances, to the brain. Of the women diagnosed each year, around 6 percent are already metastatic at diagnosis, and 40,000 are expected to die each year. Susan Axler is a long-term metastatic survivor who is attending the San Antonio Breast Cancer Symposium as an advocate through the Alamo Breast Cancer Foundation in San Antonio. Her goal, she says, is to learn as much as possible about advanced disease for the women she helps and herself. Diagnosed with DCIS in 1988 when she was 41, Axler says she researched for weeks and finally decided on a lumpectomy and radiation and no chemotherapy. She healed well and went back to her job as an elementary school reading teacher. Four years later she noticed her breast had hardened and her radiologist found a localized recurrence. She had a mastectomy and chemotherapy and once again moved on.

"You can't second guess yourself," Susan says. "There is no right or wrong, and you will make yourself crazy."

In 2000 Susan felt a knot under her arm and, once again, learned the cancer was back, this time in the bone of her sternum and her vertebra. Again she underwent chemo with different drugs. In the the work-up for this new recurrence she found out her tumor, which she had been told was ER-negative was actually "highly" ER-positive. The oncologist put her on an aromatase inhibitor that she has taken since then and her tumors have been stable.

Unfortunately, she has struggled with an ongoing hematologic disorder, which she feels has to be connected to her cancer. In 2012, her tumor markers began to rise, and her oncologist switched her to Zeloda Xeloda.

"My response has been to get involved in everything I can related to metastatic disease," she says. She took part in the American Cancer Society's national development panel for Reach to Recovery for advanced and recurrent cancer as well as serving on Department of Defense and Susan G. Komen grant review panels.

She is also active with the Cancer Support Community in Philadelphia, contributing to their newly created "Frankly Speaking about Metastatic Breast." The book provides information about every aspect of metastatic disease for the patient and caregiver and is available free of charge.

The Cancer Support Community is one of 15 founding advocacy organizations that came together this fall to form the Metastatic Breast Cancer Alliance whose goal is to improve the lives of and outcomes for those living with metastatic breast cancer and their families through increasing awareness and education about the disease and advancing policy and strategic coordination of research funding specifically focused on metastasis that has the potential to extend life, enhance quality of life and ultimately to cure.

At present the Alliance is exploring individual programming to identify overlap and gaps in care.

Axler says her treatment, like many of those with metastatic, has become art as well as science. She would also like some kind of time frame for her life, since she has been reminded by friends how quickly the disease can become deadly.

"I want a time frame," Axler says. "But I won't get it. "


Inflammatory breast cancer survivor advocates for education and research dollars


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Terry Arnold, a six-year survivor of inflammatory breast cancer (IBC), says it's strange to sit in the audience and see slides about the disease knowing you are included in the numbers. That was the situation on Tuesday at the education meeting on IBC at the San Antonio Breast Cancer Symposium.

Terry Arnold, inflammatory breast cancer survivor
Terry Arnold, six-year IBC survivor and founder o the IBC Network Foundation

Terry was watching slides on the use of radiation and its efficacy in helping women survive. The speaker was Wendy Woodward, a radiation oncologist and section chief of the breast cancer radiation oncology program at MD Anderson Cancer Center in Houston. Terry is her patient and six years ago Woodward's radiation "kicked her butt." But Terry is quick to add that it was great to be in that much pain because it meant she might live. She had spent the previous four months being passed around by doctors who didn't know what was causing her right breast to be swollen and red. Her odyssey began at age 49 in May, 2007, when she visited her family internist after noticing her right breast was swollen and warm. At the time she owned a small book store in her hometown just east of Houston. "I thought a bug had bitten me or something," she says. "I didn't have a fever so I knew it wasn't mastitis."

Her family internist took one look at her breast and said, "That's funky looking," Terry says. Then he said he knew what the problem was, she had a pituitary infection. He gave her a prescription for antibiotics and sent her to an endocrinologist for a confirmation. The endocrinologist disagreed with the internist's diagnosis and said it was an infection that would "self correct." When she said she was worried it might be breast cancer, he told her "not to get crazy on him."

By then her breast was getting darker and peau d'orange (a puckering that looks like orange peel) had begun appearing. Her internist refused to see her until she had taken all eight weeks of the meds despite the fact that her breast was getting worse. She even begged the receptionist to call him when she took her daughter in to see one of his partners for another issue.

"She told me I was making a scene because I was crying," Terry says. "She said he wasn't there and she was going to call security."

In pain and frustration, Terry went immediately to a drug store to get her daughter's prescription filled and asked the pharmacist if he could recommend a good family practitioner who would see her. He gave her the name of a woman internist who Terry called on the spot. The doctor agreed to see her the next day.

When the doctor met with her she took one look at Terry's breast and met her eyes. "I know what you have and it's not good," she said, referring her to a breast surgeon. "The surgeon did a biopsy and when he came back into the room he sat down to tell me he thought it was too late and burst into tears. I was comforting him."

After walking out to the lobby to tell her husband, they both decided to check with MD Anderson Cancer Center. What they learned from the specialists there, who redid all the testing, was that it was actually worse than she had been told because scans revealed another tumor in her left breast, positive nodes throughout her clavicle area and as well as cancer in the peritoneal cavity. And it was all triple negative. "The oncologist said I would have 18 months of treatment," Terry says. "Six months of chemo, then surgery, then chemo again and then radiation. I was just really excited because that meant he thought I would live for 18 months. I was ready to just donate my body to them for research."

Then Terry had to tell her four children, ages 8 to 24. It was her daughter's first day of college. Terry began chemotherapy within the week and after six months everyone was astounded to see she had had a complete response. She was NED. Then she had a bilateral mastectomy – no skin sparring – which is something she feels strongly that women should not do because of the high probability that the cancer will move to the skin. Radiation followed.

When Terry finished treatment, it was time to heal, but she was more and more frustrated by the lack of information about IBC – so she started the Inflammatory Breast Cancer Network, which raises funds for research and links patients and survivors. "I have 273 IBC patients in my online support group and I have 75 in the UK," Terry says. Today when she isn't on the phone with a woman who has been newly diagnosed, she is coming up with ways to raise funds. To date she and her volunteer staff have raised $100,000.

In a way IBC saved my life, she says, because where the other tumor was located, I never would have found it before it became deadly.


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