An interview with Ginny Mason: 20 years of kicking butt and taking names

Ginny Mason is the Executive Director of the Inflammatory Breast Cancer Research Foundation, a nonprofit organization that has been around since 1999. She is also an inflammatory breast cancer patient herself and here discusses her 20+ years of experience in the advocacy community with Louis Gautier, Commissioning Editor for Future Oncology.

Could you describe your experience with inflammatory breast cancer & what makes it unique to other cancers?

I'm a nurse by profession, but I knew very little about breast cancer, and so when I developed some peculiar symptoms at age 40 (rapid increase in the size of one breast, intermittent sharp shooting pains, itching and general discomfort), I didn't think it could be anything serious. After all, I was relatively young for breast cancer, had no family history and couldn't feel any lumps.

After trying to ignore it for a while, my husband commented one morning that my breast looks sick because the skin tone was strange, which prompted me to make an appointment to see my family physician. I had a mammogram, which showed nothing but dense breast tissue – I was fairly quiet and reserved back then but I was concerned enough that I mentioned to the mammography technologist, “you saw my breast, it doesn't look right … I'm surprised the mammogram is okay.” It took all my courage to speak with the radiologist who, upon recognizing me as a nurse from my time working at the hospital, just said, “Hypochondriac nurse, there's nothing wrong with your breast, go home and stop whining.”

I went back to my family doctor for the results, and he suggested that it could be a fluid-filled cyst that's blocking lymphatic vessels and that I should try an anti-inflammatory, limit my caffeine intake and then it should go away. It did not, and I finally got to the point where I felt I needed to return to my doctor (who's actually a longtime family friend); I needed to visit a surgeon for some gall bladder issues anyway, so my doctor suggested I mention my breast to them in the same visit. The surgeon didn't act worried but was much more eager to get to the bottom of things; we did a biopsy right there in his office. He even asked me to deliver the specimen straight to the pathology lab on my way back to work.

I returned to the surgeon the next day for an ultrasound on my gall bladder and was not really thinking about the biopsy we had just done. Perhaps the idea of cancer was lingering at the back of my mind, but I did not take it seriously and I was only really expecting to discuss my gall bladder surgery. Everyone seemed to spend a lot of time looking at my ultrasound, but I tend not to be a big worrier so I just let them. When I went to meet with the surgeon afterwards, he came and sat beside me, took my hand, and I thought, “Hmm, this can't be good news.”

He explained that he'd been talking with the pathologists about the biopsy, that I had a very aggressive cancer and that we needed to start treatment right away. I cracked a nervous joke and he didn't flinch. He simply said, “This is not a good one. We need to start chemotherapy right away; the oncologists are waiting to meet with you.”

We walked there together, and as I came through the doorway to their office, they just looked at me with such pity. They explained the proposed treatment, which had been discussed with the National Cancer Institute because it was so atypical, and that I should start chemotherapy right there and then. This was a Friday morning and I hadn't even told my husband yet … how could I break the news to him by saying that I'd been having chemotherapy all afternoon and that I needed collecting from the hospital?! No, I need to go home and straighten things out, talk to my family – I'll start on Monday.

I returned to work like all was normal, worked the rest of the day, and then at the end of my shift, I spoke to my boss to explain I needed Monday afternoon off for a medical appointment. He asked if it was serious, I explained to him that I had an aggressive breast cancer with a 12- to 18-month prognosis, and he just started to cry (he was always such a sweetheart). I left work still staying strong, very cool and collected, walked through the door to my husband and just fell apart crying, telling him, “I'm going to die! I'm going to die!” That was not very kind, but after almost 25 years of marriage, he was used to it.

So that's how it started.

How long did it take you to get a full diagnosis?

I was 41 years old by the time I was diagnosed in 1994 – it took 5 months for that first mammography after I noticed the initial symptoms, and another several months to receive a diagnosis after being told it was nothing. It was amazing that I didn't have metastatic disease by then, which really would have been a death sentence. The doctors did explain the rarity of the disease and that, had it not been for a similar patient the surgeon had seen a few years before, he may not have recognized what it was. I later read the pathologist's report, which said “this is some of the strangest, most unusual tissue I've ever examined” and I thought, “Hey! That's my breast you're talking about!”

After the ultrasound, the surgeon said that it looked like my body was trying to protect me from this cancer, building up these walls to keep it from spreading. That may have ultimately saved my life, although my body isn't doing a great job with that at the moment – I was diagnosed with endometrial cancer in 2019, but I'm fortunate that that is going okay.

How did that experience affect you?

Well, the thing about cancer is that it does change you – forces you to look at the positives. I'm a very different person than I was 27 years ago, which my husband jokes was the real me all along. Everything up until then was an act I put on just to please people. I'm more quick to speak my mind and being blindsided with such a diagnosis at 41 years old makes you realize that this life isn't a dress rehearsal.

How did you start your work as a patient advocate?

I didn't intend to become an advocate, it just sort of happened. I kept working throughout the treatment, mainly to keep my mind off things, but I began having some health issues as a result of treatment. I took some degree classes and added some more initials after my name so I could remain a nurse, but work at a desk if needed – my husband was a pastor at two small churches so I needed to stay in work for the health insurance.

Through all this, since I was still alive, I was asked to speak about my cancer at some ladies' groups in my community. I had a friend who was going through her third recurrence of metastatic breast cancer so we started going for lunches together and spoke candidly about our experiences – something I found you couldn't do elsewhere. We realized other cancer patients needed a safe space to really vent and get things off their chest, so we thought we should start a group but didn't really know how to go about doing that. My husband suggested that I could lead a support group given I had a background in mental health care, which I was not immediately on board with, but he said, “If you want it to happen, you might have no other choice.”

Well, we started a group, and I led it for 7 years. It turned out to be a really rewarding experience and certainly helped prepare me for things I got involved with later. As I was finishing my degree, I chose to write a thesis on support groups, how they are funded and how the Internet might change things for people with less common cancers (bear in mind this was 1999 and the Internet was very new).

Through that research, I met other people with inflammatory breast cancer for the first time, one of whom was a gentleman from Alaska – Owen. We'd begun speaking after meeting in an online discussion group set up by someone married to a woman living with the disease. Owen and I agreed, along with some other like-minded people in the group, that research was the key and we really needed more attention on that. We looked at the AIDS community in particular and saw that research is really the only way things will improve and that we patients would have to be a driving force for that.

Everything was very dependent on serendipity – it's strange – my husband and I were planning on celebrating my college graduation and 5-year survival by going to Alaska. While I was there, I met up with Owen and, after 4 hours and 40 cups of coffee, the Inflammatory Breast Cancer Research Foundation was born. Owen had the business foundation and I the medical background, so together we worked very well.

Could you tell me about what the early days of advocacy were like & your first interactions with other patients?

My first responsibility, as the first official volunteer, was to run a toll-free number. We realized that not everybody was online at that point, so people would call our toll-free number, leave a message, and then in the evenings after work I would return the calls. Once we got up and running, I'd often be on the phone for hours answering around 50 calls a month. Lots of people called with worrisome symptoms or trying to find a doctor, so my initial interaction was very similar to my role as a nurse – each one felt like a patient! I seldom met them face-to-face, but I have eight fairly sizable notebooks with lists of everyone I ever responded to and a little bit about our conversation. Every now and then, I'll see a name pop up on Twitter or in the advocacy community and think “Oh my gosh, I remember them!”

It was really enjoyable connecting with each caller and I often became invested in their outcome. When I would learn of someone’s death, I would note it in a file and remember our conversations. Eventually, I had to stop adding names because there were so many. The losses are hard and some opt to leave advocacy for this reason. The survivor's guilt is tough for people like me, who are “supposed” to have died a long time ago but didn't. I know that's not a healthy attitude, but we can't help it.

Is survivor's guilt common?

Oh yes, it's a very common thing in the advocacy community that I don't think many talk about enough. I've found you have to figure out for yourself how to deal with the loss if you're going to be a longtime advocate, particularly with advanced breast cancer. A third of inflammatory breast cancer patients have metastatic disease at diagnosis, another third will become metastatic at some point, so lots of people with this disease are going to die before they normally would. I work with a lot of young women who have children at home – like me when I was first diagnosed – and it breaks my heart to see their disease simply not respond to treatment. There's nothing harder than going to a funeral for one of these people, sitting with their family and children and realizing that they really should still be here living the lives they had created for themselves.

I've found the survivors guilt is a real drive for advocacy and wanting to push the number of people who survive up and up. There's a handful of people who you really connect with, who really impact your life, and when I'm struggling with the frustrations of slow progress, I hear their voices in my head reminding me that they're not around anymore so I need to speak up and advocate on their behalf. I'm now 68 years old and most of the people I know are retiring and questioning why I'm still going, after 27 years of a nonpaying job. It's just something you can't grasp unless you're an advocate.

Inflammatory breast cancer is a rare disease. Do you have any insight into how to achieve change when the disease affects so few?

That's one of the biggest challenges, but we try and avoid the word ‘rare,’ because we think it's much more common than people realize. There is no diagnostic code for inflammatory breast cancer, which is used to more easily and accurately archive cases in databases, so the statistics are really poor. The disease is a clinical diagnosis, rather than pathological, meaning we're usually diagnosed as either invasive ductal or invasive lobular breast cancer when you look at our biopsies, but how the disease actually manifests and the symptoms we present with are what makes it unique. To be able to get good statistics, you'd have to scour medical records and just hope that the clinician writes all over the notes ‘INFLAMMATORY BREAST CANCER.’

The thing is, inflammatory breast cancer is not a new disease. The first record is from Sir Charles Bell in 1812 and ‘inflammatory carcinoma’ was coined as a term in the 1920s; sadly, we don't know much more about the disease than what was in that first article.

I think we struggle with awareness because we also don't really fit into the typical boxes for breast cancer. There's currently lots of discussion about specific biomarker groups like triple negative breast cancer and HER2+ breast cancer – well we have high incidences of both of those in inflammatory breast cancer. There's heterogeneity among patients with the disease and we don't fully understand its biology.

Both of those issues make us seem like a small population of patients, which makes it very difficult to engage with pharmaceutical companies because they struggle to see us as profitable. A lot of what we focus on at the research foundation is exposure, which is usually me out there knocking on doors and asking questions.

What are some of your proudest achievements as president of the Inflammatory Breast Cancer Research Foundation?

One would certainly be that we've managed to stay afloat through some difficult economic periods, including COVID, with only a handful of volunteers. The majority of our income is via private donations from ordinary folks; occasionally, we're awarded small grants for projects, but by and large we rely on our community to help keep us going.

Another achievement that has really affected all inflammatory breast cancer patients is convincing the National Comprehensive Cancer Network (NCCN) to understand the need for specific treatment guidelines for our disease. Particularly for people like me who were diagnosed at a smaller community hospital, giving physicians a tool that was developed by their peers to help guide treatment decisions is really valuable. It saves doctors just treating us like typical breast cancer patients and it saves the physician having to contact an academic center so someone more experienced can treat us by proxy. That was certainly a challenge to convince the NCCN of this need, which is where my medical credentials came in handy I think. As an advocate, you need to learn to work within these existing systems if you want to affect change and my preexisting knowledge of those systems allowed me to push a little harder than others might have been able to. To me, this was a huge achievement because that is likely to change treatment patterns for patients, and if medical students are shown this information when they're still learning, they'll be reminded that inflammatory breast cancer is an important distinction and that this disease behaves differently.

We also started our own biorepository of inflammatory breast cancer tissue samples and medical records through an institutional review board-approved program. I think a year ago now, we turned that over to the Indiana University Biobank in Indianapolis for storage and management: if something were to happen to our organization, we wanted to make sure those samples would still be responsibly used and managed. We've been involved in some inflammatory breast cancer-specific clinical trials that I think are really important too; as I said earlier, a lot of our work is convincing people to differentiate this disease from locally advanced breast cancer, and you're not going to learn about the disease unless you look at the data separately. We try and secure a seat at the table as often as we can and work with research communities so we can advocate for this. I serve on SWOG and Translational Breast Cancer Research Consortiums to represent the patient voice and highlight the needs of our community, and I consistently explain that we need more trials.

Around 6 years ago, we partnered with two foundations with an interest in inflammatory breast cancer – the Susan G. Komen Foundation, a non-profit, and the private Milburn Foundation – to organize a matching-gift campaign with those funds being earmarked for research into the disease. We set up a steering committee to work out a roadmap of what we wanted inflammatory breast cancer research to look like over the coming years. I was asked to open the initial meeting with what happens when someone is first diagnosed. I thought the most important thing to remind people was that we still take months and months to actually receive a diagnosis and that needs to be the primary focus right now – everyone completely agreed with me. There has not been a good diagnostic description put together since the 70s, and, although minimal, we do know more about the disease now. We're seeing more inflammatory breast cancer patients; we can do better, let's produce a diagnostic scoring system to get people to a specialist faster and minimize the risk of metastasis before being diagnosed. The other thing with proper diagnosis is that we can actually be sure we're doing research on inflammatory breast cancer specimens.

We've started the process and currently have a white paper out for review at the moment. We'll then move on to validation in the clinic, probably in a few specialist inflammatory breast cancer clinics first, then get those guidelines out so that when someone is preparing research, they can be sure their specimens are truly inflammatory breast cancer. We're using some of our own funds for molecular validation, trying to find any specific biomarkers that define inflammatory breast cancer and then maybe we can push for an ICD code, provided by the World Health Organization, which would make a huge difference in the comprehensive statistics for our disease. That would also mean we can show pharmaceutical companies that there is a defined population of people with a specific set of biomarkers who could be enrolled into trials for new or existing targeted compounds.

I came home to my husband after that first meeting and said, “If we can accomplish this, I will feel like I have done something truly significant that will make a difference for lots of people in the future.”

In your 20+ years of advocacy, many new forms of treatment have been developed for cancer patients. Although none are specific to inflammatory breast cancer, what is it like to see new patients being offered drugs that simply didn't exist when you were diagnosed?

The lack of specific drugs is still very concerning, but as you say, there were only three US FDA-approved drugs when I was treated for my disease – doxorubicin (Adriamycin), cyclophosphamide (Cytoxan) and 5-FU (Adrucil) – all chemotherapeutics. When I look at all the options that are available now, all the new drug combinations and HER2-targeted agents, they have had a big impact on inflammatory breast cancer patients as well. HER2+ breast cancer was once thought of as the worst form of the disease; now, people almost look forward to finding out they have HER2 positivity because there are effective targeted therapies. Previously, we'd only really had estrogen blockers for people with ER or PR positive breast cancer. It's even got to the stage where oncologists are being tasked with creating specific treatment programs based on so many individual factors – does someone's tumor overexpress this, or does it have this protein or that protein.

However, that has meant that it's become more difficult to run clinical trials because we are examining smaller and smaller groups of people who might benefit from a new treatment. In some ways, I hope that this is going to benefit inflammatory breast cancer patients, but again, we're not going to easily fit into these smaller categories – clearly, this is not one single disease.

I often wonder what it was about my disease that was different from someone else's inflammatory breast cancer. On paper it might look the same as some other patients, but if we get treated with the same drugs, we might have very different outcomes. Whenever people find out that I've lived for a long time, they ask what I did, what I was treated with, what supplements I took etc. I wish I had the magic formula because if I did, I would happily give it away. It's just frustrating that despite all these new options, we have not really impacted annual deaths for inflammatory breast cancer. I have to be careful with that mindset, because some people are living a lot longer with what used to be treatment-resistant breast cancers. We haven't achieved a cure, but people getting to spender longer with their families is definitely a great thing and shows we're making some advances.

The importance of patient advocacy is being realized more & more each year, but there is always more to do. What progress do you hope for over the next 10 years?

This is one of the reasons why I agreed to take on three newer advocates, to mentor them. I want to see advocacy continue with people who are truly there for patients; it can be a challenge to help people channel their enthusiasm and interest and prepare them for the long haul because advocacy certainly is a long haul if you want to affect real change.

In a lot of ways, advocacy is easier now because there is a whole new generation of oncologists and researchers who have been exposed to advocates and the value of advocacy. When we started out, it was really hard to get a seat at the table, and even when we did, we didn't have a voice. To be honest, there are still some researchers out there that tokenize us and use our names just to get funding without any true involvement in the research that's proposed. I used to be willing to do that when I first started, but I've come to realize that no, we're not just there to sign a form. Tell me about your work, and if I think it will actually help my community, I'll provide a letter of support, but only if I continue to be genuinely involved throughout the project.

I just look forward to more and more collaborative efforts going forward, where patients really do have an active voice in clinical trial development and that our experience is really used in research. That is still a challenge with pharma companies, as it can be costly to collect those patient-reported outcomes or longer follow-up, but that's the responsibility of the patients – to speak up and not be beholding. That's one of the reasons why I never personally take money or honoraria from these companies; I ask that it is given to our research foundation instead. I also sign the checks for our foundation so I can make sure we fund research that values patients and doesn't tokenize us.

Ultimately, I don't really care if anybody knows my name or not, but I like the idea of going round posters at conferences, seeing research that the foundation sponsored and the researcher thinking “Oh no, here comes that IBC lady, she's going to want to know what I've done over the last year!”

Actually just today, I was reminded of a meeting at the American Association for Cancer Research with some friends, some young research guys from Indiana. We were at the hotel bar for a late drink, as is the custom at these conferences, and I explained that I needed to get back to my hotel room to finish writing something for a newsletter about my memories and accomplishments. One of the guys said I should describe myself as someone who “kicks butt, and takes names.”

“Really, that's how you would describe me?” I said.

“Yeah, that's a good thing, you hold people accountable. I challenge you to put that in your blog, drinks are on me tomorrow if you do.”

So I did! If I'm going to be known for something, kicking butt and taking names is a good thing to be known for. On my headstone, it'll say: “Ginny Mason – Kicked some butt and took some names.”