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Blindsided by a Second Cancer

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Published on May 25, 2018

The shock of developing a second cancer after surviving the first can leave patients feeling blindsided and fearful. How can patients cope with facing a second cancer diagnosis? What lessons learned from the first can be applied to this new treatment journey? Patient advocate and Patient Power host Carol Preston shares her first-hand experience with a second cancer—a sarcoma unrelated to her original chronic lymphocytic leukemia (CLL) diagnosis in 2006. 

Carol discusses her initial emotional reaction, how treatment decision making is different after acquiring a second cancer and shares valuable resources she encourages other patients to seek out. Tune in to find out more.

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Transcript | Blindsided by a Second Cancer

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr near San Diego in Carlsbad, California, and we're joined by my dear friend and patient advocate Carol Preston.  Carol's in Rockville, Maryland.  Carol, thanks for being with us.  

Carol Preston:

Oh, my pleasure. Thanks.  

Andrew Schorr:

So, Carol, your story is one that I think I've been living with and maybe more cancer patients will, you were diagnosed with not a recurrence of your chronic lymphocytic leukemia, you'd been through that before, but you then were in December of 2017 blindsided by a second cancer.  What was that, and how did you react?  

Carol Preston:

It is a soft tissue sarcoma, very rare, good news and bad news, I guess, that fortunately, however, was not attached to an organ.  It was not attached to the bone.  So from that perspective if I could have had any kind of luck, that's what I had.  So in the space of eight days I had a diagnosis, and exactly one week later I was sitting in front of a sarcoma expert at MD Anderson in Houston, Texas. 

Andrew Schorr:

Carol, would you say that—you were diagnosed in, I got it here, you were diagnosed in 19—in 2006 with chronic lymphocytic leukemia, went through treatment. Three-and-a-half years later went through treatment again, so in your mind you would think, well, maybe the leukemia has come back.  This came out of left field.  

Carol Preston:

Totally out of left field.  I absolutely was, to use your word, I was blindsided.  There were many things that I might have expected.  As you mentioned, I might have expected a relapse of the CLL. It had happened once, and even though I felt I was in deep remission it could happen again.  Maybe melanoma, which your CLL patients know is a more common by?product if we don't care to stay out of the sun, another blood cancer, such as you have experienced.  

All of these kinds of things I felt I had compartmentalized in my mind.  But this, a sarcoma?  Which most people didn't even know when I mentioned to them that's what I had, and they'd go, oh, a sarcoma.  What is a sarcoma?  It is that rare, most people don't even know what it is, and I have it say because of that there's very little research and work being done to advance treatments for sarcomas, so that's one of the challenges.  

Andrew Schorr:

You mentioned you went to MD Anderson from Washington, D.C.  You went back and saw specialists in Washington and in your home area as well.  So were there—well, first of all, I have to ask, how are you doing now?  We're doing this interview in May of 2018.  You were diagnosed in December of 2017.  How are you doing?  What treatment did you have?  And maybe you could talk a little bit about learnings from being through cancer previously that helped you get the best care.  

Carol Preston:

Yeah, absolutely. First of all, as far as I can tell I'm doing well, and there are a lot of reasons for that.  Number one, the type of sarcoma that was diagnosed. Number two, the speed I feel with which we were able to move to get something done.  And I think number three, my healing capability and determination to push through.  

One of the things that was very important to me, although I do tell you that I felt for four and a half months, I felt like a professional patient, and we can go into that a little bit later, because that was all I was doing.  I made myself exercise as much as I could to try and regain strength and mobility especially in my right leg because the sarcoma, it's really in kind of an amusing place.  It's—if you want to be technical, ladies and gentlemen, it was in my right gluteus maximus, which is a nice way of saying my right butt cheek, so it is what it is.

And if I may digress, I just want to show you that I am sitting on a little bit of a doughnut here while the right side continues to heal from the radiation so as not to press on it too much.  

Andrew Schorr:

Inaudible.

Carol Preston:

Yeah.  You asked me about lessons learned.  When I was first diagnosed with CLL, which was also a blindsided because I'd never been diagnosed with a cancer before, I did what the first doctor, who was a gastroenterologist because I felt a fullness in my stomach and I thought there was something going on there, I just went to the oncologist to whom I had been referred.  I didn't know anything about a timeline, researching because like most cancer patients you just want to start doing something, get treatment, get it out, somehow get on with your life.  

And so I went to a local hematologist?oncologist and started the treatment that was recommended, and it lasted for a little while, but then I relapsed three and a half years later.  In the meantime I did, as I slowly learned about what to do, how to do, got two second opinions.  One was local, and the second one was at MD Anderson with Michael Keating.  And you know Michael very well because he got you through your CLL beautifully so many years ago.  So it was it was at least good to get the corroboration and some collaboration with an expert.  

So what was my takeaway from that?  Hindsight is 20/20.  My take?away was that if I ever relapsed or I developed another cancer to take a breath somehow and go to the cutting?edge specialist first.  I may not be treated by that specialist, but at least go to the specialist and find out what the latest and greatest is in treatment.  And so second time around with the sarcoma even though I was absolutely floored with this diagnosis that's what I did, and as I said a week after diagnosis I was sitting in a chair across from a sarcoma expert at MD Anderson Cancer Center.  So that's where I started.  

Now, I went and visited two other centers.  One was in Washington, D.C., recommended by the specialist at MD Anderson, and the second was at Johns Hopkins, which has a very well-known multidisciplinary sarcoma unit, and made my decision from there.  

Andrew Schorr:

Carol, so it's devastating.  You're blindsided by another cancer.  It's a serious cancer.  It's a rare cancer.  You alluded to exercise, but I know you also got the assistance of a counselor as well. Talk about how you've gotten through these months since diagnosis because you seem pretty together right now. 

Carol Preston:

Well, I'll always try to be together for you and your wonderful audience, but I do feel fairly together, and I believe I did mention that to you.  So my treatment ended up being surgery and then radiation. Sarcoma experts will debate which comes first, the chicken or the egg.  Some counsel radiation first to shrink the tumor.  Because mine was considered mobile, meaning it wasn't attached to an organ or bone, it literally was able by the surgeon to pop it out, and unbelievably I ended up doing it even though I was in the hospital as an outpatient.  I went in at 10 that morning, I walked into my house at 8:10 that night.  So from that perspective it was amazing.  Five weeks of healing.  

In the meantime I interviewed a couple of radiologists—I knew I was going to have to have radiation—to figure out where I was going to do the radiation.  The good news about post-surgery was that the margins were clean, meaning that the area around the tumor scrape showed no cancer or no detectable cancer.  So the pathology, the post?surgical pathology was clean which meant or which hopefully means that the radiation was just an extra insurance policy to make sure that nothing was left in that area.  

Having said that, when I was going through radiation, which I ended up doing locally in Bethesda, Maryland, I ended up doing it at Hopkins.  And by the way—which has many satellite offices now in the D.C. area—I'd like to emphasize this to your audience.  You don't have to stick with one medical center for your treatment.  And I compared it to Macy's and Gimbels getting together, I know there's no Gimbels anymore, but I decided on the orthopedic oncologist, the director of orthopedic oncology at what's called MedStar Washington Hospital Center. That's one silo.  

They were recommending this radiologist at suburban hospital Johns Hopkins.  It didn't matter to them.  And what I'd like patients to understand is you can mix and match.  The important thing is for you to do what's best for you.  

Now, when I went through radiation I was handed several sheets with referral numbers for types of integrated services, for exercise, meditation, yoga.  The top name on the list was a social worker, a cancer specialist.  And I know myself well enough to think I don't have all the answers and just because I'm feeling pretty well why not talk to somebody and see where I fall on the emotional spectrum.  And, boy, that was one of the best decisions I ever made.  It was part of the service of the radiation clinic.  

All I had to do was call and make an appointment, and Susan and I worked out a mutually convenient time.  I've seen her four times.  I still have access and availability to her.  It doesn't end when the radiation ends, which was four weeks ago, by the way.  And I learned some things.  I learned that I was feeling vulnerable, because now I had a second cancer and maybe even a third if you call the relapse one episode. I was feeling uncertain about the future.  I'm 68 years old.  

But it was just very comforting to know that this cancer expert, that's all she sees are cancer patients, really could help me walk the walk and just exhale a little bit, kind of figure out the direction that I'm going.  So that was just a wonderful asset for me to have.  And I'm not necessarily finished with Susan yet. I'm taking a little break.  I'm trying to heal up.  

I will tell you that—and I don't know when these interviews will run or this interview will run, but in early June I will have my first set of scans, chest, lung, pelvic, abdomen, an MRI of the area since the surgery and the radiation.  Fingers crossed that it's all good news, for better for worse, yeah, fingers crossed.  For better or for worse I'm going to undergo these scans four time a year for the next two years.  

So in many ways I'm becoming more of a professional patient than I would care to be, and I even had to ask myself, when am I going to look at my calendar and not see all of these doctors' appointments dotted throughout?  

Andrew Schorr:

So, Carol, what would you say to those of us who either are going through a second cancer or fear a second cancer?  If I would just summarize it, a couple of quick things you said is really take a deep breath, get educated, get the right experts.  Put that team together, and it may be a crazy quilt that works for you, but just emotionally how to go forward maybe while you're dealing with it.  

Carol Preston:

You know, I'm not sure I have a pat answer for that.  I've got my highs and my lows about this.  I felt with CLL, feel with CLL, which by the way there could be a relapse in there somewhere along the line, that the first word of CLL is chronic and hopefully with the amazing research and advancements in CLL that control can be maintained.  

This one is scarier for me.  I think we can't sweep that under the rug.  This was is a little bit more uncertain.  I'm lucky if, you can call it luck, about the type of soft tissue tumor it was, not attached to anything.  I'm lucky about the pathology.  Presumably the radiation it doing its work, although that can generate complications as well.  So I think I'm feeling okay, but I do have those moments of uncertainty.  

There's something else I'd like to mention.  It hasn't been all darkness and bleakness over these past four months.  A few things.  Number one, a long?planned trip to New York came about, which was a wonderful couple of days, couple of wonderful shows that we saw, and we were still able to do that trip because, you see, you don't do radiation on the weekend, so I had just enough time to get to New York and get home again.  

The other thing that I decided during radiation and I wasn't sure to start, was to attend what ended up being my high school 51st reunion.  They couldn't get it together for the 50th, so it ended up being the 51st.  What a blast. What a wonderful time and what a lift. And so my message is that while you may feel like a professional patient and you may feel like you're, as you say, putting together silos of a team or crazy quilt of a team, you can still do things and enjoy things.  I guess what I'm trying to say is do find those things in betwixt and between that you can do to give yourself a lift.  Don't cut out everything.  

And take advantage of counselling if it's available to you and if you can find a good therapist or counselor.  I'm certainly thrilled with that outcome.  

Andrew Schorr:

Thank you for sharing your story, catching up with us.  And, Carol, you are a veteran journalist, and I hope over many years we can work together to bring not just our personal stories but the story of news as we're dealing with these serious medical conditions to bring hope and education and empowerment to thousands of people.  And thank you for what you've done with Patient Power.  And, really, all the best to you, Carol, with your journey and your recovery.  

Carol Preston:

All I can say to that is amen, and we'll talk soon.  And by the way if any patients have somebody are know anybody going through this by all means get in touch with Patient Power.  You'll let me know, and I'm happy to chat with anybody or e?mail back and forth to continue sharing what I know and the experience.  

Andrew Schorr:

Okay. Carol, all the best with your continued recovery, and thanks for being with us today.  

Carol Preston:

Thank you. 

Andrew Schorr:

I'm Andrew Schorr.  That was Carol near Washington, D.C.  And remember, knowledge can be the best medicine of all, whether you're dealing with one cancer, two or more.  Thanks for watching.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.