>> From WXXI News.

This is Connections.

I'm Evan Dawson.

Our connection this hour was made in Wisconsin with a woman named Patty.

Patty had been religious about doing breast self-exams, but for a period of 3 to 4 months she hadn't checked herself.

And one day, what began as a seemingly normal day turned into a day that would change her life.

During that delayed self-exam, she found a large lump after a mammogram and ultrasound.

Patty was told she needed surgery to have the lump removed immediately.

The surgery was scheduled for the next day.

I can clearly remember being wheeled down the hallway after surgery and seeing my doctor, my husband and my best friend, Patty told Aspirus Health Wisconsin.

I could see in their eyes that it was cancer even before they told me, she said.

Testing confirmed that the lump was cancer.

Stage two Patty was diagnosed at age 40, the age at which the experts recommend screening begin.

Every October, the color pink can be seen on products and websites, with the stated goal of raising awareness for breast cancer.

Some advocates argue that, well, this is pinkwashing, as it's sometimes called, or it's commercialized the disease or put screening on the back burner.

Well, this hour we're talking about a lot of different aspects of this.

Our local radiologist will share everything you ought to know about screening guidelines.

Who should get mammograms, when, and maybe even what insurance will cover.

We'll also explore a couple of different pieces of proposed legislation, one that could reduce barriers to screening, and a second that could help people with metastatic breast cancer access benefits.

And I'd like to welcome our guests who are here to cover all of that and more with us this hour.

Dr.

Avis O'Connell is a radiologist with Rochester Regional Health.

Easy for me to say.

Welcome back to you.

Great to see you once again, doctor.

>> My pleasure.

>> Welcome as well to Christina Thompson, executive director of the Breast Cancer Coalition of Rochester.

Thank you.

>> Thank you for having me.

>> And Aaron Park is a survivor advocate here.

Tell your story.

Nice to have you.

Thank you.

>> Thank you so much.

>> So let me just start with doctor O'Connell.

And, you know, this is a conversation that that we know we have to have every year and that, frankly, the amount of people listening right now who know someone who has been touched by breast cancer, it's enormous.

And it's important to get the very latest on the screening guidelines.

So let's start with this.

Who should get a mammogram and.

>> When?

well, being October, it's not that I always say that every month it should be breast cancer awareness.

Every month.

However, in October we get the chance to remind people, and I would like to remind people, as I always do, is that the screening guidelines, they're all over the place, but the ones that are mostly accepted are to start at age 40.

That was controversial to start at age 40 every year until 74.

Afterwards, I'd like to tell you what happens after 74, because that's really important.

But right now, a mammogram once a year over age 40.

And importantly, it's completely covered at this time under the Affordable Care Act.

No co-pay, no deductible.

>> Are you aware of there's a place that's Washington, D.C.

is what it's called.

And politicians there are arguing about coverage about the Affordable Care Act.

There's even a shutdown about health care.

So people have to be wondering, is that going to affect getting coverage for this?

>> Well, apparently the Pals act will sunset in 2026, so hopefully that won't happen because that part of that is this annual mammogram, which has been on the books since the beginning of of Obamacare way back.

Once a year over age 40, with no co-pay or deductible.

And even though I said the guidelines end at 74, that's the screening can continue as long as the person shows up.

Now, a lot of doctors tell their patients over 70, don't bother.

You don't need a mammogram anymore.

But like 2,020% of cancers that we diagnose are women over 70 or 75.

And it's the highest decade if you group the decades, the chance of getting cancer in your 30s is very low, like 1 in 200.

And as it goes up, the 70s is the highest decade for the incidence of breast cancer.

And yet the doctors saying you don't need a mammogram anymore.

What they don't say is you can still get cancer, but somehow we don't think I don't get it, because when all these ladies in their 70s and 80s come in and I sometimes afterwards say, well, what's your thought on annual mammograms?

My doctor told me I didn't need one over 70, but it's covered, completely covered.

And as long as you show up once a year, your mammogram, your basic mammogram, not all the.

>> Covered until the age of.

>> Ever, ever.

Yeah.

>> So so the guidelines that you're talking about 40 to age 70 for 40 to 70 four once a year should be covered.

>> But people don't realize that.

Still covered over 74.

The recommendations are when you should have.

>> That's why I wanted to ask you if you were writing the guidelines, would 74 be the end cut off?

>> Well, you'd need to have an asterisk and say as long as you're healthy, you can still.

Because if you're 75 years old, you still have at least ten years by the actuarial life expectancy, you're still expected to live to your mid 80s.

So why not?

You know, if you if you're healthy and you don't have all the comorbidities that might shorten your life, all of those you should at 75, you should live another 12 years.

And some women are living to their 90s.

>> Well, so this is where I realized, doctor O'Connell, that when you talk about actuarial tables, when you talk about math, it reduces a very human thing to math.

And I understand why.

I understand but but but what I want to ask you is I have a step grandmother who is 97, and if you met her, you might think she's 77.

She's amazing.

Lives independently, does almost everything she's ever done.

At 97, my stepmother is in her early to mid 70s now.

Oh, you would never think she's a day over 65.

I mean, to say that they ought not be tested.

>> Well, here's why I'm.

>> I'm confused.

>> Here's why.

It's not that, but maybe people don't understand that that is the highest decade for getting cancer is the 70s, and the 80s are close by.

But they feel like it's the false positives.

So they'll.

Now, if I ask a normal person what's a false positive?

Oh, obviously you're told you have cancer and you don't.

That's not the definition.

The definition is the definition.

You have cancer, but we don't think it's going to affect your health in your lifetime.

So somebody predicting that even if you get cancer age 75, it's not going to kill you because you're going to be, you know, it's not going to kill you.

But that's making a decision for that person.

So the false positive only means we called you back.

We did some tests.

You never had cancer.

We maybe even did a biopsy.

You didn't have cancer.

But the fact is that the cancer was small and probably wasn't going to.

As I say, shorten your life or have clinical implications in your lifetime.

>> That you would die with it, not from it.

>> Exactly.

Which is.

Yeah, exactly.

But then again, if it grows more and you have to have surgery when you're old, you know, most people.

And if you ask most people in their 80s if you got cancer, would you do not.

That's the other thing.

If somebody said, well, even if I got it, I wouldn't do anything.

But if you say to any of which I sometimes do, I see them.

And of course they, they want at least the lump removed.

They don't they, they don't want chemotherapy.

I don't blame them.

And they maybe don't even need radiation, but they all want to do something.

>> Sure.

My stepfather and his 80s had a he died at 91, in his 80s.

He had a colon cancer and said, I want all the treatment except for chemo.

I don't want chemo, but I want everything else.

And tailored it to what he thought he could handle.

>> So I think the women should be allowed again, bringing the patient into the decision.

Like, yes, you could get breast cancer, but maybe it wouldn't kill you.

Do you still want your mammogram?

And if you get your mammogram and there's a cancer in there, would you do anything?

And you'd say, well, of course, you know, then you should get the mammogram.

>> So don't just treat it like a math equation.

Every patient would be different.

And understand that when you turn 75, just because the guidelines shift, every person's going to have to make their own decisions.

>> And it's covered.

>> And it's covered.

>> Now we have to say the first mammogram is covered.

You all know.

And that's why this find it early act.

The legislation is to try.

And because I've had patients say, look, I know the screening mammograms covered, but now I know that if you call me back then the insurance comes in and maybe I have a deductible or whatever.

And this also brings us to later on, you could ask about the supplemental screening, which is also part of the act.

If I tell you your breasts are extremely dense and you'd benefit from an ultrasound, I have to tell you because there's a no surprises bill that you might be, that this is not automatically covered.

In fact, it's not covered by most insurance.

It's not covered by Medicare.

But this new act that's stuck somewhere, you find it early act would cover supplemental ultrasound for people at higher risk if they qualify.

>> Okay.

now I also want to ask you a little bit, doctor O'Connell, before I turn to your co-panelists about what we've seen reported in a number of media outlets that we've seen an increase in cancer diagnoses among people under age 50.

The New York Times says this spring, researchers at the National Cancer Institute published a report showing that between 2010 and 2019, rates of 14 cancers increased among people under the age of 50.

In the United States, breast cancer and colon cancer on the list.

and I'm not saying those are huge numbers, but they've gone up.

Do we know why?

>> No.

Well, first, no is the short answer, but the answer is it's possibly many things we do know, and especially breast and colon are the two I've seen most closely.

But they're throwing out all the possible reasons.

This is somewhere that A.I.

might help, I reckon if you put a million cases into a big computer and put all the factors they had, did you know what did you eat?

did you, did you eat?

You know, you put all the questions in and you let the computer crank it out.

But the lists of, of of causes, potential causes are childbearing.

Well, somebody in their 40s, they may haven't maybe haven't had.

But early childbearing protects breastfeeding, protects drinking too much alcohol is a negative.

Being overweight is a negative.

Genetics.

We don't even.

And that's where A.I.

if you ask me about A.I.

later, genetics is probably a big one.

There are many genetics we don't know about.

We all know about Brca1 and Brca2, but there are many, many more genetic aberrations that people have, and we're just finding out, you know, atm, you know, of unknown significance or so if we did genetics earlier on people and found a risk and then environmental, okay, that's the final bucket.

Could it be the soil, the water, the air, the microplastics.

So nobody really knows.

But this is the perfect time with the computers and the A.I.

to feed all the info in on people with young cancers and see if it comes out.

And the ones I know are healthy, fit, not overweight, not alcoholic, you know, all these things.

So these are in the category of people who we don't know and they look healthy and they are healthy.

I mean, I know several young people with colon cancer and it's like they have none of these risk factors except the unknowns.

>> As skeptical as I can be about A.I.

in a lot of aspects of society, I'm very optimistic of what it can do in medicine.

>> And big data.

>> Yeah, it sounds like you are too optimistic.

>> Yeah, yeah, I am.

And so the headlines are always like, Will it take your job?

So for radiology, the worry is will it take your job.

And I answer no, it'll make us better.

It'll make us better.

We've been doing a type of A.I.

for years that used to be called CAD, computer aided detection came in, FDA approved it in 1998.

So we've been doing A.I., if you like, for years.

It highlights things like, did you look at this?

And so and then if you hadn't or you hadn't looked carefully, you look again, you'd ignore them if they're normal.

But A.I.

helps with detection.

It helps with analyzing the tumor to help with the treatment.

It helps follow up the treatment.

And then finally, and very significantly, it helps with the risk factors.

You can put in risk factors you didn't know pancreatic.

Has that got anything.

You know men with prostate.

Does that affect the women with breast.

So if you put all those in and the A.I.

then it goes better than the acoustic we all talk about now.

And previously it was the Gail model.

So there previously were models.

We used to give people their risk.

But there's so much more to it.

And there's new A.I.

documents to say we can put other information in and come up with a different.

The suggestion is that at age 25 or 30, women should get, you know, a baseline evaluation of every every risk that could possibly be in their family and see if they should have enhanced screening.

In other words, make their screening earlier or add more to it.

That's that.

>> All right.

so listeners, you've got questions, comments as we broaden this discussion as we talk about breast cancer.

844295 talk.

It's toll free.

8442958255263 WXXI.

If you call from Rochester 2639994, you can email the program Connections at wxxi.org.

If you're watching on the WXXI News YouTube channel, we ask you to like and subscribe.

That's great and join the conversation there in the chat.

If you want to do that.

So so let's let's talk about, I think one other aspect of this that probably everyone in the room would agree on, which is Ava's even put this in all caps.

Don't ignore symptoms.

So if you're going to leave something with people today about symptoms, doctor O'Connell, you first here.

What do you want people to understand?

>> So if you don't have.

Well, this is a basic truth that if you don't have a screening mammogram and you're one of the unlucky folks to get cancer, you're going to find it yourself.

And the ways the things not to ignore are any lump and any discharge or nipple changes pain that's unusual for you.

Not the usual period pain that we're all aware of, but I mean unusual focal pain.

And don't ignore symptoms and don't be embarrassed to say I went in.

I thought, I thought I might have had something, and they told me it was just, you know, just lumpy breasts.

That's okay.

Or just cyst.

There's no such thing.

It's like, that's the best news.

If we tell you it's nothing.

So don't ignore symptoms.

Even if you've shown them to them before.

And they said it was nothing.

We've had people come in and I showed it to my doctor a few months ago.

They said it was nothing and now it seems bigger.

So when you look at it, you don't want to say, but they should have come in sooner, you know, so don't ignore it.

>> Christina, as the executive director of the Breast Cancer Coalition of Rochester have you I know you helped people of all ages.

Are you seeing younger people come in needing services?

>> We definitely see a full gamut of of ages in general.

But one thing I really loved that doctor O'Connell was talking about was involving that patient in the scenario.

And I it was referring to the patient 74 and older.

But I think we can do the same.

On the other end of the spectrum, because first of all, if we ask for a raise of hands right now on who was diagnosed before 40, we're going to see several in this room.

and so it's the same kind of thing.

Know your body, know the changes.

Don't ignore something.

and bring it to the professionals.

If there is any change or just anything that seems out of the norm.

>>, and you want to talk a little bit more about what the coalition does here, what kind of supports and services you offer, and then we'll talk a little bit more about kind of some of the landscape of legislation, metastatic breast cancer and more.

But tell people about what the coalition does.

>> So the Breast Cancer Coalition is an organization that here in Rochester, we're on University Avenue.

we offer free support, education programs for anybody with a breast cancer or gynecologic cancer diagnosis.

And there's no age limits.

There's just nothing there.

You're going to find a staff of really supportive individuals.

Some of them have had a diagnosis themselves.

Some are just fantastic support people.

quickly you will learn that you're not alone and we can really help with having this person with a diagnosis become a very informed decision maker.

To learn more about what options may or may not be on the table.

giving empowerment to seeking a second opinion.

If something seems off or just getting that validation that nope, same same opinion.

and then we can also get you connected with someone who's had a similar situation.

So you can ask those questions.

What would be helpful for me after surgery?

Or how did you combat certain side effects with a treatment that I'm expecting to have?

you can talk things out.

There's nothing that can't be discussed within those walls.

>> I know that there's a piece of legislation that's been on your radar for a while.

We're going to talk about the metastatic Breast Cancer Access to Care Act.

Coming up, let's get Erin's story in here first, because I think it it's important to understand it.

So, Erin, I'm going to give you the floor and tell us a little bit about your story, okay?

>> I think it's important for my my story that begins with my youngest sister.

she was diagnosed with breast cancer at the age of 29. she passed away 16 months later.

Later.

And so that's kind of guided my decision making.

I, I did go to get mammograms and as well as my middle sister and probably four years after she passed it was one of those things where I, I did I did notice something and went to and had a had a, you know, a a mammogram and you know, you kind of go to the go to another room and you kind of get you're in there for a little bit longer, and you and you find out, you know, so you're getting kind of very nervous.

And I, they wanted me to take a biopsy and,, and it did turn out to be cancer.

I had a.. >> Bilateral.

>> yes.

Bilateral.

Bilateral.

mastectomy.

And when that was, you know, biopsied after the after the surgery, I had stage three cancer which will tell you that it's in my bloodstream.

but I was getting close to that five, five year mark where you have more maybe more confidence that you're going to be the the statistics and probably four years and four months.

I got I was in a in my, in the office.

I was a nurse.

I was in, in the at the, at the office, and I couldn't speak, and I was just lucky that my coworker noticed she was a, nurse practitioner, and she noticed that I couldn't speak, and she kind of ran me down to the emergency room, and it turned out it was turned.

it turned out to be a progression to my brain.

and so I have issues with my with my brain, my brain language.

issues.

And so that that was hard.

I was there for continued to work for about two years, and I ended up, it was more.

There was more progression in the brain.

And I ended up having a craniotomy.

And so that was kind of the end of my working career.

And that was really difficult for me.

and so I that's kind of where the Breast Cancer Coalition I, I I loved working and once things settled down, I was able to work at the Or volunteer at the at the advocacy committee and also the, the research committee.

so that was that was great.

And then you know, as things progressed a little more than a year ago I, I had progressed again to to brain cancer or, sorry, my bone cancer.

And but I had I had a lot of support from the Common Grounds group.

which, is a bunch of mostly ladies with stage four cancer.

So that was amazing to have that kind of support.

Who?

People who really knew what you're going through.

And but I'm, you know, able to able to, you know still, you know, go to go to Wegmans that kind of, you know, go to and talk to my talk to my friends.

And it's so I guess that's my story.

>> Yeah.

I just want to read a little bit of what you wrote for the Breast Cancer Coalition, because I think this will help the audience even appreciate your story a little bit more.

You said that quote.

To be honest, I've only begun to accept it.

And by accept, I mean it continues to frustrate me on a daily basis.

My brain is funny now, a source of comedy and difficult to explain or understand.

I stumble with numbers, letters, colors, everything you learned in kindergarten.

I know the words, but they spill out of my mouth too fast before I find the right ones.

End quote.

You're doing great on this program.

Thanks.

I appreciate you telling your story.

and I think it's important for people to hear this, not because, again, this is every breast cancer case.

Not not the case, but we're talking about all different kinds of breast cancer.

And let me ask our other guest, Christina.

What do you want?

First of all, people in general to understand about metastatic.

and then we'll talk a little about legislation here.

>> Well, it does happen to be the perfect day for it.

It is National metastatic Breast Cancer Awareness Day.

and I think that really what it does is bring awareness to people like Erin and a lot of other people like her that are living with this stage of the disease a metastatic diagnosis means that the cancer has left the breast and has spread to a distant organ.

And it is treatable, but it is not curable.

So those are people that are going to be in treatment for the rest of their lives.

And that's a very different story that I think sometimes the pink ribbons in October do not get to explain.

>> Okay.

And when it comes to what can be done, what's happening out there, the metastatic breast cancer Access to Care Act is out there.

What should we know about that?

>> So this has been this is currently in its fourth Congress that we've been working on this and currently for someone like Aaron, just to use you again as an example, thank you for coming.

we have people that are diagnosed with metastatic breast cancer under the age of 65 and will continue to live life normally for as long as they can be at working, raising families, doing whatever they are doing.

and currently, if they were to decide that they no longer were able to work due to treatments or the disease progression itself, they currently face five months of waiting for Social Security disability to become their new income, and a subsequent 24 months for Medicare to be their insurance.

and you are talking about somebody who is in a terminal disease.

They cannot go without insurance or without treatment during that time.

so this metastatic Breast Cancer Access to Care Act is asking Congress to change the Social Security Act, to waive those wait times.

These are people who have paid into both of these programs for their entire career.

They are deemed disabled and are privy to these.

However, those wait times are there for a different reason.

and also, these wait times have been removed for folks in the same situation who have ALS and end stage renal disease.

So we know it can be done.

We just need to add metastatic breast cancer to the list.

>> doctor O'Connell, anything you want to add on metastatic?

>> Well, I have to say, I think it was extremely brave of you to come and be, you know, on, on live or you can't edit it.

I mean, that was fabulous.

I really applaud you for that.

so, no, the I suppose you could say that the earlier a diagnosis is made, but it's not always possible, you know, and for younger people who aren't even thinking of cancer, except when there's a family history, I think I think it boils down to if you could get your risk factors checked early enough and you got screened early enough and you didn't have to worry about paying for the ultrasound that you might need, or the MRI, I mean, we haven't even gone there.

The cost I mean, the thing is, the cost of care that if if the mammogram is covered and of course, the diagnostic is not, it's a screening mammogram is covered and the cost can sometimes deter people.

And we shouldn't underestimate that.

If you need an MRI that costs thousands of dollars, and even with your insurance, you may have a copay and deductible.

So the other act that I just mentioned briefly was to find it early act, and that was to allow people who have a higher than average risk.

Now, unfortunately, not everybody, but a higher than average risk to get supplemental imaging with ultrasound, which isn't as good as MRI, which is the best.

I mean, if if I ruled the world and money was no object, everybody over the age of if depending on the risk factors could have a free MRI.

And there are ways of having cheaper MRIs because there's an abbreviated MRI and there's the full scale MRI and the results from the screening MRI, the the abbreviated MRIs, which some people will offer.

Well, that's another whole subject, but it's a much shorter exam.

And the time on the table is less and the cost is less.

And if something like that could be used, there's a survey from England where they did that and the results, the extra cancers found on the abbreviated MRI were like 17 per thousand after the mammogram was negative.

It's unbelievable those cancers would be sitting in there.

And so nobody can feel.

Nobody knows they're there until they feel them.

So I think the access what was it called?

The find it early act would allow that people like that could get supplemental imaging covered.

In the same way the mammo is covered.

>> I agree that that that definitely should be implemented, but I will say that we are lucky where we live in New York State specifically.

when I was diagnosed, I had no medical insurance.

I worked full time in an office, but it was a very small office.

So that was the loophole.

They didn't have to offer any medical insurance.

However, we've got the cancer services program here, which basically, if you're uninsured or underinsured and you need a screening mammogram, also pap smear and colorectal exam they will cover you for the imaging necessary.

And obviously in a program like that, they're going to run into a number of people who do have a positive diagnosis.

You can then be enrolled in Medicaid for active treatment, which was the case for me.

So, you know, there are some failsafes.

But I will say to Evan's point about DC being a hot mess right now, some of those programs are are on the chopping block as well.

And in New York State, the federal government decides how much money towards Medicaid they're going to provide.

A New York State matches it.

And we are one of the highest in the state, but it allows us to have access to programs like that.

>> But people have to know about them.

>> They do.

>> Yeah.

>> Can I let me just get a couple other listener comments and then what we'll do is we'll take a break and we'll read more feedback from the audience, but maybe related here, Mary writes to say I'm a survivor diagnosed at 70.

Breast Cancer Coalition has been a wonderful support with information.

If diagnosed early, survival can be long term.

I'm amazed at the number of young women in their 20s and 30s being diagnosed now.

That's from from Mary.

So Mary, thank you for that.

and not only a salute to the coalition, but the wonderful medical care you're getting in this community.

and David wanted to know if if your guest, he's talking about doctor O'Connell.

wants to weigh in on whether you prefer the health system here or in your native or in your native Scotland.

>> Oh, Scotland.

Nice.

Actually, my grandmother, I have a lot of Scottish in my DNA.

I'm Irish, of course.

Yeah.

Of course, as Evan knows.

Okay.

>> You're not Scottish.

You are.

>> Irish.

I'm part Scottish.

>> Have you ever practiced in Ireland?

>> Oh, yes.

>> Okay.

>> So.

Yes.

>> David wants to know what you prefer.

>> Well, if you need something, you're fully covered.

But to get the diagnosis.

So there it screening is every three years.

And I think it starts at age 50.

I mean I haven't practiced there for quite a few years, but screening is every three years.

Same in the UK every three years.

And so a lot of interval cancers, which are the aggressive ones, can happen in that three years.

So it's but if you're found to have a lump, you don't pay a penny after that.

Once you have a diagnosis, your treatment is free.

But the waiting list, it could be months before you get your surgery.

So yeah, I, I'm appalled that this country here does not have, you know, at least a lower level of in Ireland.

If you're Irish, you get covered basics like Medicaid almost.

But you can buy more to add to it without disallowing your original one.

So anybody who's an Irish and I actually updated my passport.

So if I get sick in Ireland, I can wander in.

I'm, you know, I'm back to being I'm both now.

But you know, you can be completely covered with no bill at all.

You can buy insurance to get a fancier room or fancier something, but it's the treatment part is better.

The diagnosis part is not, or the screening part is not.

Not at all.

>> let's take our only break.

We're going to come back to your questions, comments from the audience as we talk about breast cancer.

of all kinds, screening guidelines, what you ought to know if you've got questions, comments about metastatic or everything else related to it.

We're talking to Dr.

Avis O'Connell, radiologist with Rochester Regional Health Christina Thompson, executive director of the Breast Cancer Coalition of Rochester.

Aaron Park is a survivor advocate.

We'll come right back with your questions and comments next.

I'm Evan Dawson Tuesday on the next Connections.

The new Taylor Swift album has prompted an interesting question for critics.

If you get everything you want in life, if you're truly happy, can you make great art?

Or do you need a chip on your shoulder?

Does your work suffer?

If you're happy, Taylor Swift says she thinks she can still make great art.

We're going to talk about what it takes on Tuesday.

>> Support for your public radio station comes from our members and from Mary Cariola, center, proud supporter of Connections with Evan Dawson.

Believing an informed and engaged community is a connected one.

Mary Cariola.

>> This is Connections.

I'm Evan Dawson.

Let me get an email from Roger who says I just wanted to throw this out there.

Though very rare, men can also get breast cancer.

I had a suspicious lump and long story short, I ended up having all or most of the fatty tissue removed from my chest.

I think men really need to be more cognizant of any changes in their bodies.

That's from Roger.

Dr.

O'Connell, what do you think?

>> Well, that was going to be one of my bullet points.

You know, the people we don't talk about are the women over 70 and the men.

And honestly, it's it's only like 1% of the cancers around are in men and they don't get screened routinely.

We do have men who show up for screening because they know that their family has the BRCA gene which is more common?

BRCA two most men, when they get breast cancer, you find that they had that.

But, so men well there's two sides to this one.

It's they have less breasts to check.

I mean, their only way of doing things is to notice the change.

So I mean, if there's a lump, they should not assume.

And we see lots of men with lumps.

And luckily most of them are benign.

Mostly it's gynecomastia.

But it's great news.

They come in, they're really scared.

You know, everybody who has breast lump, male or female, any age, they immediately go to I've got cancer.

And it's an anxiety that's not necessarily there.

And it's a whole psychological thing.

It's not as big a, you know, other imaging like screening lungs.

People don't seem to worry as much.

But the minute somebody thinks they have breast cancer, they are more scared than almost any other cancer anyway.

So men should just be aware of any lumps, knowing that most of them, most of them will be okay.

But any nipple changes if the nipple starts turning in or discharge, that's a huge red flag.

>> Roger, thank you for anything you want to add there, Christina.

>> We've definitely had men who seek out the coalition, and absolutely.

And I think especially this month when we do a lot of outreach and we're we're speaking, I think a lot of people are shocked to learn that men can have a breast cancer diagnosis.

So the more we talk about it, the better.

>> Yeah.

>> Yeah.

>> Roger.

Thank you for that.

Alison says that there is cancer in her family.

Should she start screenings earlier than 40?

Dr.

O'Connell.

>> Well that depends.

So if the red flags for earlier screening are.

If the person in the family was a first degree, first of all.

But if it's not a first degree relative if it's young, if the patient was under 40 or perhaps even under 50, if the patient was premenopausal when they were diagnosed, the person in your family, that's one flag.

If the person, anybody in your family had bilateral breast cancer, that's another red flag.

If there was a man with cancer, that's another flag that feeds into the last question that if there was a male breast cancer in the family, that's a red flag.

And multiple family members who had breast and ovarian, because that's a genetic link.

So there are several red flags that the physician in charge of doing your care with you would be able to highlight.

But those are some of the red flags that says you might be at a higher risk.

So to start before age 40, usually we don't start mammograms before 30, but we certainly do mammograms on women in their 30s.

There are two reasons the radiation is not the biggest risk, which will ask all the questions about radiation, but the risk is that at that age, people, the mammograms are often not very helpful because the breasts are too dense.

But if somebody had a problem, so screening mammograms in the 30s, unless there's high risk, wouldn't necessarily be it be the the way to go.

But it's very variable.

What we would do is an MRI if somebody had a really high risk and we calculate 15 to 20%, they might be recommended to have an MRI, not a mammogram.

>> I'm sure that this is one for the experts, but, Christina, how often are there questions?

you know, in the coalition experience, just of when people should be getting screening and how confusing that can be.

>> It is confusing because it's so individualized.

There is not just a blanket statement.

And I think that it's got to take those factors that doctor O'Connell was saying into it, as well as the changes that one might feel themselves.

knowing how some of those outside risks of lifestyle and things like that can elevate and then just having a solid primary care doctor or OB-GYN that you're seeing regularly that you talk about these sorts of things.

>> So you mean for the younger screening?

I think most people agree that 40 to 75, it should be every year, although people some people say over 55, you go to two years.

But anyway, I think what you're mentioning is the younger people.

>> Absolutely right.

>> Yeah.

some questions about who is opposed to some of the legislation that's out there.

So the metastatic breast cancer Access to Care Act the extension of other pieces of legislation is there.

What's the active opposition to some of this?

Christina.

>> It's mind boggling.

we have a congresswoman in New York state who?

We were on a Zoom call to talk about all of this, and we had a physician living with metastatic breast cancer on the call.

And the congresswoman cited her fear was fraud that people would fraudulently say that they have metastatic breast cancer in order to access Social Security, disability income and access Medicare.

after that call, she actually has frozen us completely out of her office.

So the Breast Cancer Coalition and our survivor advocates are not granted meetings when we're in D.C.

or in New York State.

We have constituents of hers living with metastatic breast cancer.

She will not budge.

>> It's my job to ask you which member of Congress.

>> Claudia Tenney.

>> Can she be shamed?

>> I think she should be.

This is this is inhumane treatment for people who have paid into the system over time.

And now you are telling them that their life isn't worth waiting.

29 months.

>> Could somebody do a calculation?

How many has any fraud ever, ever been discovered?

Anyone?

If you ask her, show us one case, even one one case of fraud that has happened where somebody actually said who in their right mind would say, oh, I have metastatic breast.

I mean, you'd be struck down.

>> But did she say, did she say to anybody in that call that they that she had evidence that people were using metastatic breast cancer fraudulently?

>> I believe it was just her blanket statement towards Medicare coverage in general that she's concerned about fraud.

>> Waste, fraud and abuse.

>> Yes, exactly.

Whereas her colleagues Elise Stefanik, Nick Langworthy have signed on in the past, Nick Langworthy has not yet.

This year with Congress.

Again, we are very hopeful that he would.

His office has been very helpful to us.

she has been the major holdout.

>> What about.

Oh, okay.

So.

>> Helpful update there.

I don't think the congresswoman is going to come on this program, but she is invited and we will make another effort.

she certainly is welcome to talk about this and a lot of different things.

And I hope she does.

I hope she will she will be treated fairly.

There are a lot of important questions that people ought to have for her.

And I, you know, Christina, my guess is, as the executive director of the coalition, you don't view your job as a political one.

>> Not at all.

So cancer doesn't have a political party.

>> You know?

So for you to be this pointed on the air about a sitting member of Congress, you must you must feel like you've been pushed.

>> Well, I would love to hear her thoughts because in previous congressional years, she did sign on.

And then she became a member of the Ways and Means Committee.

So there's more kind of financial oversight.

And perhaps that was her thought.

but it's a major holdout on something that we have people fighting for their lives over this.

I have folks that are a part of our Common Ground group who are living with metastatic disease.

And while they know that the months are shortening for them, they have to continue to work because they carry the insurance for their entire family.

And those are the decisions people are having to make right now, because she won't sign on to this.

>> Yeah, reading a survivor's perspective from your coalition newsletter, person says, quote, having early access to Medicare would mean that I could go out on disability now instead of trying to push through until I qualify at 65, nine years from now.

Right now, it seems I will have to work until I die.

Not because I want to, but because I have to.

>> Unacceptable.

>> Aaron Park, what is it like hearing members of the government question whether support for patients with metastatic breast cancer should be there, or if that should be taken away out of concern of fraud?

>> It's horrible to hear that.

we've been into DC, or at least I have for two years, and I've watched some of my my, metastatic friends who are, you know, I, I guess was lucky because I had a major epileptic.

Epileptic event, and I ended up with AA4 day, medical coma, and that helped make it.

It was easier for my me to qualify that way.

And my, you know, in along the table, I have friends of mine who are literally dragging themselves to work every day.

And it's, it's just it's really it's very disheartening to, to see a to see a member of Congress to do that and, and not take our calls.

it's it's just horrible, I think.

>> Are you aware, doctor, of you seem to be not aware of any fraud cases.

>> Oh, I'd love them to be asked.

Show us.

Now, there may be fraud and abuse in Medicare in general, but in specifically in metastatic cancer of any kind, because, you know, they also say the minute we allow it to the breast cancer, they're going to want it for prostate.

Well they should here's something that nobody ever discusses.

The stress and worry.

And physical toll of going to work.

When you have to because you don't qualify.

That in itself is not good for your, you know, because there are things we don't understand about why some people do better and, and, and less well with the same diagnosis.

I would say if you let people not be so stressed about getting to work on time in a snowstorm, you know, it would actually help their care.

Of course, that's caring for people, not counting the beans.

You know.

>> Exactly.

>> But I would question anybody who says there's fraud and abuse.

Yes, there is in Medicare.

But show me one case where somebody said they had metastatic cancer and didn't woo.

>> Back to your feedback, Ellie in Rochester shares this story.

from breast Cancer.org COVID and flu may activate breast cancer cells in lungs.

And reading from the story, people with a history of breast cancer may want to consider COVID and flu vaccinations, according to researchers.

Common respiratory infections caused by viruses may be able to activate sleeping breast cancer cells in the lungs and could lead to metastatic disease, according to database and mouse studies.

The study was published in the journal nature.

Are you aware?

>> No, I'm not aware.

However, I would say that I think people should get the flu and COVID vaccine if they can.

You know, I do believe that those two vaccines should be taken.

I have not seen anything that it activates.

Mind you, if you're sick and your immune system is flagging.

We know that the immune system is very important in fighting cancer, but that that connection is kind of nebulous and it makes sense.

Just like when somebody is stressed out, it's not healthy to have to make their way to work.

So no, I haven't seen that study.

But get vaccinated.

The vaccines are good.

>> Okay.

All right.

Joel in Rochester on the phone next.

Hey, Joel.

Go ahead.

>> Oh, hi.

Yeah, I was just wondering if your guest had any comment about the exclusion of other metastatic cancers.

from that legislation.

Why is it only metastatic breast cancer?

That should get, early access to these resources?

>> Yeah, I mean, that's a that's a valid question.

And I know that this is policy from the National Breast Cancer Coalition.

So they are a federal umbrella for groups just like ours here in Rochester.

We support their public policy.

and they wrote this legislation for Congress as a go.

So that's a great question.

and I think if there are other organizations out there, like a prostate group and they wanted to do something similar, they could certainly gain from the momentum that we've got.

both of the waivers for ALS and end stage renal have been an act for a long, long time.

And so we are still fighting very hard for metastatic breast cancer.

that's all I.

>> Well, it might improve, improve, improve the argument if several other I mean I would why not every metastatic cancer because that definition of metastatic is significant no matter where the original organ is.

So yeah, he makes a good point.

But but but the Breast Cancer Coalition is not going to just add in prostate.

But it'll make it easier for the prostate folks.

>> Okay Joel, anything you need to add there.

>> Oh, no.

That was it.

Thank you.

>> Okay.

No fair points there.

let me get an email from a listener who's asking to withhold their name on the air and says the following.

I'm curious about recommendations or thoughts on screening for women diagnosed with DCIs.

Triple negative after lumpectomy and radiation.

Dr.

O'Connell.

>> Well, the guidelines from the NCCN, it doesn't matter who it is and the guidelines are, once any cancer has been successfully treated and the radiation is is finished at least six months before they can return to normal, they should have normal screening and they don't necessarily qualify for the 20% lifetime risk of cancer MRI because they've already had cancer.

But it's possible.

So that person and we see them every single day should definitely get a mammogram once a year.

It's every six months till you get to two year mark.

And then it goes every year.

But of course, anytime we think there's any change, we start doing more things.

But there's no different screening at this point except just have the regular screening.

>> DCIs, by the way, is what for people who.

>> Don't know ductal carcinoma in situ, also known as stage zero.

Also, some people say isn't really cancer because it's still confined to the basement membrane.

If it's not cancer now, what would be my line?

It will be almost certainly cancer in your lifetime.

Some DCIs progresses really quickly, some take several years.

But yeah, DCIs is.

It's the least the least invasive.

It's not invasive at all.

It's noninvasive.

Cancer insight.

>> You okay?

working with triple negative.

Any progress?

that does that remain?

>> Triple negative tends to be more aggressive.

More aggressive?

Yeah, but I've never seen anything that you'd get screening more often.

I don't know if that would qualify you for an annual MRI.

Everybody's individual.

It's you know, if the surgeon or the oncologist chooses to order an MRI for some reason.

>> And again, triple negative just means the question of what is fueling the cancer.

>> Yeah.

>> And it's not known.

>> And most cancer well most cancers are estrogen positive, progesterone positive and Her2 positive or negative.

The triple negatives are none of those estrogen negative, progesterone negative and Her2 negative.

And they tend to be more aggressive.

They're quite treatable, but they tend to be more aggressive.

And so but if a doctor if the referring doctor, oncologist or surgeon has any concern about recurrence of a DCIs, triple negative or otherwise, and they choose to order an MRI for possible recurrence, that's a whole different scenario.

We're mostly talking about screening right now, but people can get breast MRIs for potential recurrence or residual disease.

That's a different conversation.

>> All right.

Before we close the program, you know, Aaron Park's been here to tell her story as a survivor advocate.

And we've talked a lot about where things stand with resources, with legislation.

What do you need most in your own life right now?

>> That's that's a good question.

you know, to be to be honest, I, I, I don't need much.

I have a lot of friends that I've met through the Breast Cancer Coalition, and my family is very, supportive., I think probably the biggest frustration for me is mostly the epilepsy that I was incurred as part of the, , and, you know, and that's that seems like it's getting better as far as driving.

that's I'm able to drive now, but it's, it's those little things that you had highlighted in my in my my essay is that a lot of times I will say things backwards or and it's, it's kind of become a a, like a family joke at this point.

You're like, wait, did you just say that?

And it's it's a lot of compassion from from my friend, from my friends, family and the Breast Cancer Coalition.

So I, I, I feel like I'm fine.

>> Well, I've really appreciated you sharing your story here today.

it's really important.

it's important that we understand.

I mean, certainly everybody, probably everybody listening has had breast cancer somewhere around them, if not directly in your family.

but it's important to hear these stories.

And Aaron Park is just one survivor advocate.

There are many more.

Christina Thompson, executive director of the Breast Cancer Coalition of Rochester.

What do you want to leave with listeners today?

>> I want to say that if you are living with metastatic breast cancer or gynecologic cancer, you're certainly not alone and we'd be happy to meet you all month long.

We are running our Cindy L Dertinger Advanced Breast and Gynecologic Cancer webinar series every Wednesday at noon.

and we've got our previous ones that are recorded and shared on our website.

and they really are topics for people who are living with or caretaking for somebody who has metastatic breast cancer.

Topics include things like pain beyond the physical managing, total pain navigating PTSD and cancer survivorship.

So they're really universal topics.

And we'll also feature survivor speakers.

>> so access it where.

>> Right on our website at BCC.

>> And doctor O'Connell, about 30s, would you want to leave with people here?

>> Well, I'm thank you for having me.

And I am really honored to be in the presence of of our lovely advocate here.

And I think understanding and compassion would be what I would wish for you.

And I'm always happy to hear Christina with the Breast Cancer Coalition and Gyn goes from strength to strength.

And I'm very happy to be part of this discussion.

>> Well, I want to thank our guests for a very important conversation this hour.

Dr.

O'Connell, radiologist with the Rochester Regional Health.

Thanks for being with us as always.

Dr.

O'Connell.

Thank you to she's not Scottish, she's Irish.

Thank you to Christina Thompson.

Nothing wrong with being Scottish, by the way.

Christina Thompson.

Executive director of the Breast Cancer Coalition of Rochester.

Thank you for being here, Aaron Park.

Good luck to you.

Thanks for sharing your story.

>> Thank you so much.

>> And from all of us at Connections, thank you for listening.

Thank you for watching.

Thanks for finding us on the many platforms we're on.

Share with your friends and neighbors and we'll be back with you tomorrow on member supported public media.

>> This program is a production of WXXI Public Radio.

The views expressed do not necessarily represent those of this station.

Its staff, management or underwriters.

The broadcast is meant for the private use of our audience.

Any rebroadcast or use in another medium without expressed written consent of WXXI is strictly prohibited.

Connections with Evan Dawson is available as a podcast.

Just click on the link at wxxinews.org.