What's Next? A Roadmap for Cancer Survivorship

The survivorship period after treatment is an exciting and often scary phase of the cancer journey. Learn what to expect and how to be proactive in a post-treatment landscape. https://bit.ly/46fByDj

From the Moment of Diagnosis

Are you living with cancer? From dealing with physical symptoms to managing stress, everyone's cancer journey has challenges. Your cancer story is your own, navigating relationships, family, and sexual health is challenging after a cancer diagnosis. Find expert information, practical tips, and trusted resources that may help by listening to this week’s podcast about cancer survivorship.

In this Episode:

• 03:23 - Road Trip to New Mexico: The Miracles of El Santuario de Chimayó and Biscochitos 
• 06:10 - Cancer Survivorship - What is a Survivor?
• 08:56 - Phases of Cancer Survivorship
• 12:42 - How to Be Proactive In Your Survivorship
• 23:16 - Ozzie Osbourne's Funeral Plans - Written 14 Years Before His Death
• 25:19 - Outro

 #cancer #cancersurvivor #cancersideeffects #cancertreatment #cancersurveillance #secondarycancers #cancerprevention #survivorship #survivor #everydayisagift 

Transcript

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Hello and welcome to Everyone Dies. This week we're talking about survivorship after a cancer diagnosis. Our podcast discusses serious illness, dying, death, and bereavement.

I'm Marianne Matzo, a nurse practitioner, and I use my experience from working as a nurse for 47 years to help answer your questions about what happens at the end of life. And I'm Charlie Navarette, an actor in New York City, and here to offer an every person viewpoint to our podcast. We're both here because we believe that the more you know, the better prepared you are to make difficult decisions in a crisis.

Also, this podcast does not provide medical nor legal advice. Please listen to the complete disclosure at the end of the recording. Our main topic is in the second half, so you can just fast forward to that chat free zone if you want to get right to this week's topic.

In the first half, Charlie has our recipe of the week and the story of miracles in New Mexico. In the second half, as part of our ongoing series, Everything You Always Wanted to Know About Cancer But Didn't Have Anyone to Ask, we're going to talk about the goal of cancer treatment, which is survivorship. In the third half, Charlie has Ozzy Osbourne's funeral plans published 14 years before his death.

You know, if the Prince of Darkness can write advanced directives, what's stopping the rest of us from completing this important task? Do you need an incentive of a live bat? Because if you do, we can hook you up. Charlie, do you know the story of the bat and Ozzy Osbourne? I'm Batman. Tell your friends.

No, I don't. Can you enlighten me? Well, as I was going through the script for this week's show, I said, yeah, what is that story? So, I was reading that one of his fans threw a bat up on the stage, and he thought that it was like just a rubber toy. So, he picked it up and bit its head off and got like this mouthful.

Ugh. A bat, yeah. Yeah.

And then people wanted it every show. Jeez. Can you imagine how gross that must have been? Life was simpler back then, Marianne.

Well, I'm sure that drugs and alcohol were probably involved. Yeah, you would want something strong to wash down that bat head. Yes.

So, I understand that. Indeed. Yeah, you've heard of bat head.

Well, this is bat head. Bat head? You've never heard of bat head? I have not. What is that? You see how your hair looks right now? That's bat head.

No, that's the way it usually looks. Really, bat head. I didn't know that.

There was a name for it. Yeah, like when you just get out of bed and you don't comb your hair. But at least you've got something up there, right? In our first half, Everyone Dies travels New Mexico, where it is hotter than Hades.

If you are searching for a miracle, El Santuario de Chimayo is a small church located in northern New Mexico that is known for its miraculous healing dirt. Each year, tens of thousands of pilgrims visit the church, particularly during Holy Week, to collect the sacred dirt believed to have healing powers. It is considered one of the most important pilgrimage sites in the U.S. It has been said that the discarded crutches, canes, braces, wheelchairs, and messages of Thanksgiving that hang from the adobe walls in the prayer room are proof of the miracles of Chimayo.

Still, while many people have left their crutches and walked away cured, the church has never sought to officially confirm or deny any of the miracles. It has also been said that the dirt in the Pocito replenishes itself. Yet, it is common knowledge that the dirt is brought in from surrounding hillsides and though blessed by a priest, has no special power in and of itself.

What then should we make of these miracles? Do they really happen? Or are they just imagined? A small notebook published by the Sons of the Holy Family, caretakers of the Santuario, states, Many written testimonies of favors granted have been received at the shrine. Maybe they will increase the faith of others, not in the mud of Chimayo, but in love. Many people come to Chimayo in search of miracles.

Some find them, some don't. Sometimes, however, the miracle is not the one that cures our tormented bodies. Sometimes the miracle is faith itself.

Bisochitos are New Mexico state cookies. Traditionally a Christmas cookie, it is such a tasty treat that they are made year-round. Everyone loves cookies, so bring a few to your next funeral lunch.

Bon Appetit! Please go to our webpage for this week's recipe for Bisochitos and additional resources for this program. This is the part where we ask for your financial support. Your tax-deductible gift will go directly to supporting our non-profit journalism so that we can remain accessible to everyone.

You can donate at www.everyonedies.org. That's every, the number one, dies, dot org. Or at our site on Patreon under Everyone Dies. Marianne.

Thanks, Charlie. According to the American Cancer Society, a cancer survivor is anyone who has a history of cancer, meaning that they've had a cancer diagnosis and could be receiving treatment, or have completed it. So, from the moment of diagnosis, you become a cancer survivor.

50 years ago in 1975, 2% of the population were cancer survivors, and we now have 6% of the population surviving. Put it another way, one out of every 18 Americans, that's 18.6 million people, were a cancer survivor on January 1st, 2025. By 2035, that number is projected to exceed 22 million.

The reasons for this are changes in the advancement in cancer treatments, also detection methods, and improved follow-up, which is called survivorship care. The typical scenario of care for the person with cancer is that after diagnosis and staging, and if you don't know what those are, we have podcasts in this series that explains this, so please have a listen. A person opts for treatment with the intent of cancer-free survival, otherwise known as survivorship.

During the phase of cancer treatment, people are in a pretty organized system with professionals who help ensure the treatment stays on plan, symptoms are managed, and scans are completed on schedule. When you enter the survivorship phase, you typically return to your original healthcare practitioner except for your every six months, or yearly, or every three months, whatever the follow-up scans are. This is where people can get lost in the transition from organized cancer management to care by the primary healthcare practitioner.

As the cancer survivor, paying attention to how you're feeling and any changes in your body falls to the cancer survivor to report and follow up on. It's natural to want to be done with the whole cancer world and never interact with it again, but I'm here to tell you that while those are normal feelings, it can ultimately hurt you if you ignore symptoms because you don't want to think about your cancer returning. I've had numerous patients who ignore a change they noticed in their body until they finally decided not to, or until it has come time to follow up with their oncologist and find out that their cancer has recurred.

I don't know for a fact if their delay changed their outcome, but their fears resulted in them restarting treatment later than it could have. Cancer survivorship is a separate phase of care for cancer survivors that includes four parts. The first part is prevention and detection of new cancers and or cancer recurrence.

After cancer treatment, many survivors want to find ways to reduce their chances of their cancer coming back. Some worry that the way they eat, the stress in their lives, or their exposure to chemicals may put them at risk. Cancer survivors find that this is the time when they take a good look at how they take care of themselves and recognize the importance of starting to live a healthier life.

Things to consider are quitting smoking, how much alcohol you drink, your nutrition, and your physical activity. We have podcasts and resources for you, and your oncologist can refer you to programs to help you develop that healthy lifestyle. The second phase is observation for cancer spread, recurrence, or second cancers.

Yes, we know cancer can come back, and if it does, this is called a recurrence. An important part of the survivorship phase is follow-up with your oncologist for scans, usually a CAT scan or an MRI, to see if there are any changes from your last scan. This is the time for you to report any symptoms or changes you've noticed to your oncologist so that they can determine what next steps are needed to follow up on your symptoms.

It's been my experience that people living with cancer assume that any symptom they feel is from the cancer or that the cancer has returned. Please remember that just because you have certain symptoms, it doesn't always mean that the cancer has come back. Symptoms can be due to other problems that need to be addressed.

Depending on the treatments you have, there may be a risk for a new cancer develop that's totally different from your original diagnosis. Your oncologist will work with you to keep track of any changes that are occurring. The third aspect is treatments for the effects of cancer and its treatment.

Each of the cancer treatments can leave behind its own issues. Take a look at the podcast we've already produced about brain fog, fatigue, mouth pain, and pain in general. Stay tuned as we add more to the list.

In my experience, it can take up to a year after you finish treatment to start to feel like yourself again. Be patient. Do things that help you feel better.

And take advantage of the resources at your cancer center or that are available online. The last phase is the coordination between specialists and primary care practitioners to help ensure that your health needs are met. People tend to get very attached to their oncologists and want them to take care of everything forever.

It's a hard discussion when patients would come to me and want me to manage their diabetes or their blood pressure because I had managed their cancer. This is a normal feeling. But the oncologist, unfortunately, keeps getting new patients to care for.

And you do need to go back to your primary health care practitioner to manage those things. The lines of communication between your oncologist and your PCP should remain open. Electronical medical records help to keep things stay coordinated.

But I'm here to say you need to keep track and pay attention to what needs to be done and when. Don't be passive in your own care. Get a notebook or a binder and pay attention to when your scans are due or when your blood work needs to be drawn.

So, what are the things that you should be paying attention to? Well, first, keep a copy of your end-of-treatment assessment and care plan. Be sure to ask your oncologist for a written summary of your treatment. In the summary, they should suggest what aspects of your healthcare need to be followed.

Then share the summary with any new doctors you see, especially your primary care practitioner, so you can discuss your follow-up care plan. This summary includes important health information about your cancer history and it should include your diagnosis, stage of cancer, any surgical procedures that were done, past cancer medications, radiation treatments, possible long-term problems that may arise, and recommendations for future care. If you are not given one, call your oncology office and ask for one.

Second, find out who is your ongoing main contact. Who's that person going to be and how often do you need to see them? Three, be aware of any post-treatment symptoms. Four, get support with day-to-day concerns.

You might think a support group or seeing a counselor was for when you were in active treatment. But people are in survival mode when they're going through cancer treatment, and it's often only after the treatment is over that you have the time and energy to even think about what you've been through. Talk about how you feel.

Take steps towards healthier living. Find out more about what to look for if you're worried about treatment side effects or the cancer coming back. And if you're having those worries, don't ask your online Facebook group or Dr. Google what's going on.

Just call your oncologist and talk to the nurse. Ask them what's, you know, tell them what's going on. They'll give you some advice.

They'll tell you, you know, let's have you come in a little bit earlier if they think that that's necessary. But don't keep it to yourself and be sure the person you talk to is your oncology or your PCP. Monitor your own health and go to your follow-up appointments.

I've had patients who think that once the chemo or radiation is over, so are the appointments. But one of the reasons we have so many survivors now is because we're able to catch problems before they get too big. The survivorship period after treatment is an exciting and often scary part of life.

Use the resources available. Learn all you can about this phase and help others. Live your best life and, you know, as we say, every day is a gift.

Charlie, any questions? I love what you said about don't contact Dr. Google. Well, sometimes, you know, that's the first go-to for some people. Yeah, no, no, I understand, I understand that.

I've never heard it put that way, though. But yeah, you're right. I mean, people will sometimes just go, oh, my friend the internet will figure this out or my group on, you know, whatever, you know, thing is going on in the computer.

You know, I'll just discuss this with my friends. Yeah, that's not going to cut it. But I like that, don't contact Dr. Google.

I was going to ask you, well, so in general, what you have seen, I mean, do most people follow up? Or do they just get lazy and just ignore it until, you know, things get really bad? I mean, generally speaking, do people follow up? Well, you know, it's like with everything, Charlie, there's a percentage that do and a percentage that don't and a percentage that if you hunt them down and call them, they will, you know, but only because you nag at them. And I don't think it's lazy. I think it's fear.

I think it's fear. Mostly fear? Okay. Yeah.

And, or, you know, sort of magical thinking that, you know, so it's over, I've had my first scan, my doctor says I'm cancer free and that's what we want to believe and that's what we tell ourselves and that might be true, but you do need to go for your surveillance scans and we'll talk next week, I think, about scan anxiety because that's a thing too is every time you have to go in for to see your follow up and do your scans, that's sort of reminding you once again that you're a cancer survivor. Oh, okay. Scan anxiety.

What do you say about notebooks where, I'm sorry, what in a notebook? Just like a little, what did you say about that? Just writing down how you feel or what? No, like you have, like you would have for, like I have a file for my dog. I had a file for each of my kids with, you know, the reporter, whatever from the doctor. Well, you need to have your own file with, you know, if that's a notebook or if that's whatever it is that, you know, it might be a box, whatever it is, is the way you keep things organized is you should have your survivorship care plan in there and, you know, your scan results and all of your info so that if you need it, it's all in one spot and you're not like, oh God, now I have to try to find this stuff.

Just, you know, it's nice to start right from the very beginning. You know, I've had patients, families generally will come in with their notebook and, you know, write stuff down and have a log of every visit or every chemo. You know, there are some people who do that and some people who have a, you know, a smaller version of that, but you should have some version of that.

Yeah, my dad was very good at doing that. I mean, thankfully, I mean, he was healthy literally to the end of his life. Which is about 10 days before he died.

But yeah, he would always, you know, keep like little notes about that. Yeah, it's always, yeah, it's always important just to let at least somebody know what's going on with you. Yeah, so my dad was very good at doing that.

So, you know, so, okay, so yeah, I mean, just what you were saying, Marianne, about people, you know, sometimes not paying attention until things start to hurt. I don't know if you've come across this, but with, I know sometimes with my mom, she would not say that something was bothering her, that she was in pain with, I mean, she never had cancer or anything, but she would not say that she was in some sort of pain or discomfort because, quote, oh, I don't want to bother the doctor. Or quote, you know, I don't, oh, I don't want to bother, you know, your sister.

I don't know, do you get that much? Do you see that much where it's like, oh, I don't want to bother somebody that wanted to pinch her when she would do that? Yeah, people will do that. Oh, you know, I know you're too busy to, you know, about this or, you know, you've got so many other patients. It's like, yeah, but this is your appointment, you're booked, I'm all yours, you're all mine for this period of time.

So, I personally would rather deal with a symptom than deal with a recurrence. So, please tell me and, you know, let's work it out and figure out what's going on and help you feel better because you've got, as far as we know, this one life, you know, you don't want to spend it in pain, you don't want to spend it not being able to swallow or whatever it is that's going on. Yeah, toward the end, my mom did start to, because I'm the one who is not there, you know, because I, you know, they're in Michigan, I'm in New York.

So, I talked with her over the phone. She says, oh, well, you know, I didn't want to tell your sister that I'm feeling A, B, and C. Oh, I didn't want to say anything to your brother about, oh, that, you know, I'm feeling this pain, which was her way of, you know, letting, you know, letting us know that she was in some discomfort. So, at least, you know, by the end, she did start, in her own magical way, in her magical thinking, okay, well, I'm not really bothering anyone.

I'm just having conversation here and, yeah, there was this little pain here and I don't know what the hell it is. So, yeah, in the end, she, that was her way of dealing with it. Well, she took it to you because she knew that you would.

Yeah, oh, yeah, exactly, yeah. Tell the kids that, hey, this is going on, or maybe you'd come home. That's always a good reason to tell you.

Yes, and because my sister was the only girl in the family, inevitably, it would, like, fall on her. Well, I didn't want to tell your sister. I didn't want to tell your sister.

I think your sister knows that I, and then fill in the blank, and again, just because my sister was the only girl and just that whole thing about, you know, it's the female sibling who's supposed to be taking care of things. Okay, thankfully, we're past that. Well, in my family, I know it's not true with everyone.

Right. For our third half, Ozzy Osbourne, who died last month, wrote his funeral plans on page 388 of his autobiography, I Am Ozzy. If I don't live a day longer, I'll have had more than my fair share.

The only thing I ask is that if I end up brain dead in a hospital somewhere, just pull the plug, please. But I doubt it'll get to that. Knowing me, I'll go out of some stupid way.

I'll trip on the doorstep and break my neck, or I'll choke on a throat lozenge, or a bird will shed on me and give me some weird virus from another planet. Look what happened with the quad bike. I'd been taking lethal combinations of booze and drugs for decades, but it was riding over a pothole in my backyard at two miles an hour that nearly killed me.

Don't get me wrong. I don't worry about that kind of heavy duty stuff on a daily basis. I've come to believe that everything in life is worked out in advance.

So whenever bad shit happens, there ain't nothing you can do about it. You've just got to ride it out. And eventually, death will come, like it comes to everyone.

I've said to Sharon, don't cremate me whatever you do. I want to be put in the ground, in a nice garden somewhere, with a tree planted over my head, a crabapple tree preferably, so the kids can make wine out of me and get pissed out of their heads. As for what they'll put on my headstone, I ain't under any illusions.

If I close my eyes, I can already see it. Ozzy Osbourne, born 1948, died whatever. He bit the head off a bat.

And with that image in mind, thus ends this week's episode. Please stay tuned for the continuing saga of Everyone Dies. And thank you for listening.

This is Charlie Navarette, and from actor William Holden in the film Network. All of a sudden, it's closer to the end than it is to the beginning. And death is suddenly a perceptible thing to me with definable features.

You're dealing with a man who has primal doubts. And I'm Marianne Matzo, and we'll see you next week. Remember, every day is a gift.

Or other qualified health providers with any questions that you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have heard from this podcast. If you think you may have a medical emergency, call your doctor or 911 immediately.

Everyone Dies does not recommend or endorse any specific tests, practitioners, products, procedures, opinions, or other information that may be mentioned in this podcast. Reliance on any information provided in this podcast by persons appearing on this podcast at the invitation of Everyone Dies or by other members is solely at your own risk.