Joan Mancuso

Joan Mancuso has been living with metastatic breast cancer since 2007, having been originally diagnosed with early stage breast cancer in 2003. She was diagnosed with brain metastasis in 2008. For over a decade, Joan has been involved in many breast cancer projects. She has been a member of the planning committee for the Metastatic Breast Cancer Research Conference’s annual meeting as well as an advocate member of the Translational Breast Cancer Research Consortium with Abramson Cancer Center, University of Pennsylvania. Through SHARE Joan has been interviewed on talk radio to raise MBC awareness during Breast Cancer Awareness Month. She is currently an advocate member of ASCO and a member of their TAPUR Publications Group. Joan was recently invited by ASCO to assist in developing guidelines for biosimilars. She is a consumer reviewer for the Department of Defense Breast Cancer Research Program and has been an advocate on many scientific grant proposals at major cancer centers. Joan stepped down from employment in 2009. She was a special reports editor on a news desk for financial news.

Full Transcription

Introduction & Background on Joan

Joan Mancuso:
My name is Joan Mancuso. I was diagnosed in 2003 with stage 2 HER2+ breast cancer. I was then diagnosed in 2007 with metastatic breast cancer, first to the lung, and then to the brain in 2008. 

It however has been questionable as to whether my pathology has changed or not, and that can happen. And the question is now whether my pathology actually at some point changed to triple-negative breast cancer. 

The metastasis was actually asymptomatic. I had already advanced to stage 4 breast cancer in 2007, after having been diagnosed with stage two in 2003. And after it had spread to my lung, I asked my oncologist whether or not it would be beneficial to have an annual brain MRI. And on the second MRI in 2008, the results showed roughly two and a half centimeter brain metastasis in my left frontal lobe.

Craniotomy & Radiation

Joan Mancuso:
After I was diagnosed with a brain metastasis, first of all, of course I was totally shocked. And I figured that this was going to be the end game now, since the breast cancer had spread to the brain. I saw two opinions and I had been a member of a website online and I knew about people getting brain metastases and many of them would have SRS, or stereotactic radiosurgery, which would be one shot to the tumor with radiation. 

And when I went for the second opinion, they suggested that I actually have, or I would get more control, if I had a craniotomy followed by five targeted dosages of radiation. Or in this case, it was IMRT, or intensity-modulated radiation therapy, which would be when the radiation beam comes in, it really focuses on a target to minimize any radiation to the surrounding healthy tissue.

So the beam is modulated – the intensity of the beam is modulated. So needless to say, I was very upset. I wanted SRS and I couldn’t understand this. Most people were getting SRS. But they felt that I would have more control over having both the craniotomy followed by the targeted radiation. So that’s the decision I made in October 2008.

I had the craniotomy. It was very frightening. I felt that someone was going to be operating on my brain and we really don’t know what would happen afterwards, if I would come out of the anesthesia or even if I would come out of the anesthesia at all and what state I would be in. And as it turns out, it all worked out well. I was in the hospital for a few days. I was actually working full time at that time. And they wanted me to return to work in six weeks, but I actually went back to work in four weeks. However, I had to wait a little bit before they started the radiation to let the surgery continue to heal.

And so then what I was doing is – not really after work, but 4/4:30 in the afternoon, I was hopping on a bus and going 20 blocks from where I was working to the hospital that was going to give me the radiation. And I had to do that for five times. 

It was a little bit problematic because the radiation oncologist, or that department, can change their mind in a heartbeat given recalibration of the machine or other patients and just their whole schedule. So I remember having to change my schedule a few times after I had told my manager that, you know, I was going to go this day, this day and this day. And that was kind of difficult. 

But then I did the five shots of radiation and also that worked well. The radiation oncologist, he actually said that he gave me a prescription for steroids, but he said, I don’t really think that you’re going to need them. Another thing for my surgery was that I was not given anti-seizure medication, which the first opinion had recommended that I take an anti-seizure medication. But the place where I had the surgery said we don’t do that unless you’re already having seizure problems and, you know, you’re already on medication. 

So, as I mentioned again, I was very frightened to have had, you know, the surgery and then afterwards, you know, they have to wait about a month or so before they start giving you additional brain MRIs to check out just exactly what’s going on in your brain and the tumor bed, because that’s actually what was radiated. The tumor was gone. And after a while it started to become enhanced again, and then it became questionable on the reports. The radiologist’s impression started to indicate that they couldn’t rule out regrow of the tumor. Of course, that’s very frightening because I was sort of – what does that mean?

And I was pressing that issue because the radiation oncologist felt like we’ll cross that bridge when we get there. But I don’t feel that way. I feel like I need plan A, B and C to determine just exactly what’s going on. And he suggests the area could actually be radiated again. Or maybe we could give you a whole brain radiation, which would be, of course, exactly what it is, radiating the whole brain, rather than just the part of it that had the brain metastasis.

But instead, I had by that time started to see both the radiologists and a radiation oncologist. The radiation oncologist recommended that I have a brain PET and it showed no activity. And so the oncologist, the neuro-oncologist, basically said that we can never say 100% with cancer, but we’re 99% sure that there’s nothing going on there. And that ended up being the case and I’ve never had another brain metastasis since then.

Post Craniotomy

Joan Mancuso:
When I got home after the surgery I was home for the four weeks. And I remember I had 26 staples going from here, all the way down to here. And you can kind of see really a little bit, and I have this dent in my forehead here and also a dent in the side of my temple and that’s sort of a normal result of maybe having a frontal lobe craniotomy. 

So I did have to go to have the staples out. And, of course, this area had been shaved. My hair had been shaved all the way down to this area. And I remember when I was actually in the hospital, my head was really wrapped up around. And it was very, very tight to kind of, I guess, hold back from maybe any swelling, but I’m not exactly sure. But I do know it had to be wrapped very tightly. 

And so when I came home after about a week or so, I had to go in and I had to have the staples removed. There were 26 of them. And then, you know, the hair eventually grew back, but it has changed sort of the shape of my forehead, my hairline, up here. It’s no big deal. And you know, then I eventually went back to work. I didn’t take the steroids. There’s no pain involved. At least in my particular case. There’s no pain or discomfort that you might have from another surgery. 

So when I was first diagnosed, for example, in 2007, with a single lung metastasis also found on screening, even though I was not stage 4. I had a VATS – video-assisted thoracic surgery, which is minimally invasive surgery. So of course there was a lot of discomfort there. So in comparison, there was no discomfort at all with the brain surgery, with the craniotomy.

Screening Post Surgery

Joan Mancuso:
After the surgery, I had, of course, follow ups to determine, you know, whether I would be developing anymore brain metastasis. And it started out initially as a brain MRI with contrast every three months. Then eventually went to four months. Then it went to maybe six months, nine months. And it went to a year. I was going just once a year. And I’ve been doing that for quite some time because I had the brain metastasis in 2008. And I would say it’s been at least seven or eight years. Everything has been, everything’s been okay.

Screening for Brain Metastasis 

Joan Mancuso:
You know, I was screened for my brain metastasis. It turned out, of course, that it was asymptomatic. And when I was diagnosed with metastatic breast cancer in 2007, the brain metastasis was discovered in 2008 – about a year or so later. And, you know, there’s questions about whether it’s beneficial to screen patients who could potentially be at high risk or such as what I had, an asymptomatic tumor, to determine whether it’s worth screening.

And I’m very happy to know that a couple of years ago a study is now underway to use brain MRIs to screen for either high-risk stage 3, people with breast cancer, or those of us who were already diagnosed with stage 4 breast cancer, to determine whether it’s meaningful to actually screen in advance.

So of course there’s some primary and secondary end points of a trial, of a study, to determine whether it’s beneficial to do that. And I’m very happy that that trial got underway because I was originally diagnosed with HER2+ breast cancer. So I had a high probability of it – first of all, just spreading in general – and then also spreading to the brain.

I was very fortunate to have an oncologist who, when I had stage 2 and seven positive lymph nodes, was actually screening me every nine months, which again is not standard of care. And in 2007 they discovered a one centimeter lung metastasis in the apex, or the upper part of my left lung. And the question was not whether it was cancer, the question was whether it was primary lung cancer or secondary, or otherwise stage 4 breast cancer. And it was shown to be stage 4 breast cancer. 

At that time, I was looking online about what people do even when they had lung cancer. And I came across, eventually, the term, Oligometastatic cancer. As in, being able to potentially treat limited metastatic spread with both systemic treatment and local procedures such as surgery or radiation or interventional radiology. Interventional radiology would be something like radiofrequency ablation, which is actually bleeding the tumor with the radio frequency waves, done by an individual radiologist, but it’s not radiation. Something else would be microwave ablation. And there’s no explanation necessary there. 

So in a sense, there is this question about potentially screening upfront. So I was very lucky because unlike, potentially, maybe, liver metastasis, where blood work might show that there’s a problem – elevated liver enzymes, elevated bilirubin. There really isn’t anything for the lung. And oftentimes that’s why lung cancer is so deadly because by the time you have a symptom of coughing or, you know, a cold that won’t go away, or potentially what appears to be pneumonia, it’s almost too late. It’s spread too far for you to be having those types of symptoms. So I was extremely lucky.

And I actually did have video-assisted thoracic surgery, right from the get-go, to remove that, to take a wedge. It recurred in 2008 in the same area and I had radiofrequency ablation of the lung. It’s never occurred in the lung since then. 

So, again, getting back to the standard of care for screening for brain metastasis is – this is an excellent trial to determine whether it is in fact meaningful to be screened because some of us have a higher probability of getting a brain metastasis – those of us with HER2+ breast cancer. And it probably is actually even somewhat a little bit higher for people who have triple-negative breast cancer. So it will be very good to see whether it’s meaningful to screen for that.

Hope for Patients

Joan Mancuso:
I just want to mention that I’m a very long-term survivor. I was diagnosed in 2007. I don’t know if you want to use this term survivor, metavivor. But you all understand what I mean. But I think it’s important to know two things. One is that it’s not the norm. The median lifespan for a person diagnosed today with metastatic breast cancer is actually only two and a half to three years. Plus, roughly three quarters of people diagnosed with metastatic breast cancer today do not survive more than five years. 

So I think that it’s important to know that I am not the norm in this particular situation. But on the other side toward that, is that I did have a brain metastasis and I’ve never gotten another one and it ended up really not being the end game. So I think it gives us some hope. We’re all individuals in terms of our diagnoses and our subtypes and that, you know, we really don’t know what an outcome would be, but any one of us could have a good outcome. 

The other thing is that a little bit over a year ago, it was advised that I actually go off of HERCEPTIN. I’ve been without any evidence of disease since 2008. And there is even a suggestion that maybe my pathology has changed. There is a 30% chance of that happening. And because the lung metastasis was triple-negative and the brain metastasis was triple-negative. And when I had – when my breast slide tumor had been re-evaluated early on in the game in another institution, it was shown to be borderline HER2, which was different from the initial diagnosis of HER2 3+. And so, it’s just been recommended that I go off of HERCEPTIN. 

So for me, this has only been in the last year, so it’s kind of frightening to do this. I feel sort of like my security blanket is gone and that this is really going to be a new chapter for me about what’s going to happen in the future. We will know that there’s no evidence-based medicine to suggest that maybe the cancer won’t ever come back. It’s only anecdotal, potentially anecdotal evidence. So, I’m obviously, you know, concerned and I’m doing this with some trepidation, but I’m going to, I’ve decided to take that advice and I’ll just see how it goes.

Advice (NOTE: This is found on the Advice Section of the website).

Joan Mancuso:
When I got the diagnosis of a brain metastasis, I ended up getting two opinions and I really think that it’s worth doing that. As I mentioned, the first surgeon for the craniotomy said that they would use seizure medications, yet the second surgeon said that they would not use them if I wasn’t already on them.

Also, you might get, you know, two opinions that say the same. They might just recommend that you have, you know, the SRS or the one shot of radiation to the tumor. Or on the other hand, such as in my case, I was recommended to do the craniotomy and the other type, the IMRT or radiation. But I definitely think it’s worthwhile to get a second opinion, so that you can try to determine what you think would be the better way to go. And, you know, what your overall sense of comfort is with each doctor that you speak with. And so I was glad that I did that, got that second opinion, and I would clearly, I would clearly recommend it.