From WXXI news this is Connections.

I'm Evan Dawson.

Our connection this hour was made nearly one year ago, October 23rd, 2025, when the Breast Cancer Coalition of Rochester dropped a little news on this program.

The coalition has been working hard to convince Congress to pass the Metastatic Breast Cancer Access to Care Act, which aims to waive waiting periods for Social Security disability insurance and Medicare for stage four patients.

The coalition thought this was a no brainer, but it turns out that one of the local members of Congress, just one, did not agree and basically froze them out.

Congresswoman Claudia Tenney would not even take a meeting or return a phone call about it.

After our show clips went viral, we heard from breast cancer patients in other states who never met the congresswoman, but they were furious.

And eventually, Congresswoman Tenney at least reopened the lines of communication as we understand it, with the coalition and with local doctors about it.

Her reason for opposing the bill was her concern about possible waste, fraud and abuse.

A year later, the coalition is still working hard on this issue.

And today, in part, we're walking them back to discuss that effort.

But we're also talking about the latest in breast health and cancer care.

We're going to talk about a possible role for AI in helping improve outcomes, and a lot more to share with you, including a survivor story, although Karen Hill says it is a thriver story.

Karen is with us and metastatic breast cancer thriver.

Welcome.

Thank you for being here.

Thank you for having me.

I don't know if you're wearing, you're wearing pink on purpose.

It pops on a YouTube stream.

You look great today.

Next to Karen is Christina Thompson, executive director of the Breast Cancer Coalition of Rochester.

Welcome back to the program.

Happy to be here, Evan.

Across the table, doctor Ruth Oregon is executive vice dean and chief academic officer at the University of Rochester and a breast cancer oncologist at the Wilmot Cancer Institute.

Welcome to the program.

Thank you for having me.

And welcome to Doctor Avice O'Connell, a longtime local radiologist who we've been talking to well over a decade on this program.

It's great to have you.

Well thank you.

Not to any of us.

It's nice to see you.

So briefly here, before we get Karen story, I want to mention, just in case you see any of our social streams and you see that the Breast Cancer Coalition of Rochester was kind enough to choose me to honor with an award last weekend.

That's not why you're here.

You cannot buy your way out of this program with awards.

Christine Thompson gets nowhere with me.

Never would I never.

It was such a lovely, and for me, a very meaningful award.

We considered not accepting it because it is an advocacy award.

And I do a lot of things, I think, in the community.

But what we really do is journalism.

And I'm not technically an advocate, although, as I said last weekend at your outstanding event, that if anything, I'm an advocate for bringing people together and having hard conversations even when they don't want to or even when they really, really disagree.

And that is harder and harder these days.

So that's not why you're here.

And I want to thank you again for that lovely award.

It was it means a lot to everybody on the Connections team.

And if you think back on your part of what made this whole issue kind of explode in the Zeit, Geist was the way that people responded to news about your efforts with this piece of legislation.

Would you remind people with the legislation is, first of all, certainly.

So this is a federal bill.

And if passed, for somebody who is under the age of 65 and living with metastatic breast cancer, once they get to the point that they're no longer working full time, either because of the treatments or the disease progression, they currently face five months to wait for Social Security disability income, which as we know, is a fraction of their working income.

And then they have 24 months to wait for Medicare to cover them medically.

And as you'll learn from all the speakers here today, people living with metastatic breast and breast cancer do not have that time.

And those wait times are already waived in our country.

If you're in the same situation and you're living with Lou Gehrig's disease or end stage renal disease.

So we're just asking Congress to add metastatic breast cancer to the list.

And this is a pretty bipartisan response to this legislation.

Well Tom.

Absolutely.

So it's currently sitting in the Ways and Means Committee, which the the Congress member in question sits on and could pass this quite quickly if she so desired.

And many bills have gone through this committee with a lot less support than ours has.

So it's mind boggling that with as much support as this has, it continues to stall.

And we are talking about our sixth year of supporting this.

And if it doesn't pass by January, we start again at zero.

So she isn't a Republican?

She is.

But there are plenty of Republicans who support that.

She doesn't.

But there are plenty of Republicans.

This is a left right issue, right?

This is not a left right issue.

Garber Rino is Republican in New York state.

He is one of the lead co-sponsors.

Nick Langworthy is on board.

We have got a ton of Republican support, and she supported it in prior sessions.

I'm under the impression that Republicans can get breast cancer, so that's probably true.

True bipartisan.

Okay.

Yeah.

So at this point, at this point, are you angry about this?

I'm super angry, Evan, because, you know, we're talking about a year ago we had impact and we got a little bit of a door open to speak with staff.

But here we are sitting, talking about the exact same thing a year later.

Well, a year ago, when you came on this program and you called out the congresswoman by name, she was freezing you out at the time.

She wouldn't take your call.

She wouldn't take a meeting.

Did that change afterwards?

Briefly, briefly.

So we have a wonderful advocate named Rene who was able to get a meeting in Washington, DC when she was there doing our advocacy work.

But currently, because we have such a short window to get this passed for the rest of the year, we are really trying to get a meeting with her to talk about getting the support through her committee, not her aide.

You want to talk to the congresswoman directly?

That's what we want.

And we have survivor advocates living with metastatic breast cancer that are her constituents that will sit in this meeting.

So we're not going to waste your time with people that don't aren't in her district.

Okay.

But so far you can't get the meeting.

Please call me Congresswoman Tenney.

Okay.

And what next then?

I mean, is she really the major holdup to actually getting this passed?

Absolutely.

She could champion this if she wants.

She could be the champion for women's health care if she wanted to.

And I highly encourage her to do so.

And she will say, I think based on her past comments, that she's still worried about waste, fraud and abuse here.

Well, and it's funny to sit in a room with someone going through metastatic breast cancer and two doctors who treat it, there are so many people on your team when you're diagnosed.

There's so many biopsies, tests, scans, bloodwork.

You cannot you cannot fake having metastatic breast cancer when it comes to that kind of documentation.

So you don't think there's any kind of fraud or abuse in the system.

Do the doctors I mean, do you do you think that's a legitimate issue or concern that there?

I think absolutely not.

I mean, I think, you know, these these patients like their own treatments.

They have to they're not able to work.

I mean, we need to support them.

So there's no fraud involved at this.

Okay.

Maybe maybe somebody is conflating fraud in the system in general.

Yeah, I would say show me one case of a fraudulent.

Who would ever talk about bad luck, bring bad luck on yourself.

Who would ever consider trying to apply for all of this pretending they had metastatic breast cancer?

I challenge you to bring me one case of the person who fraudulently did it in the system.

There may be fraud and we all admit that, but this is not that case.

No, this is far, far, far too narrow.

Because the other thing you're talking about is the patient's got to be under 65 years old.

The median diagnosis age for breast cancer right now is 62.

So we're talking about a handful of people annually.

Really.

So let's meet somebody who is a metastatic breast cancer thriver.

And that's Karen Hill who is here.

It's nice to see you.

How are you doing these days?

I'm doing great.

Thriving.

Yeah.

Yeah, yeah.

When was your diagnosis?

I was originally diagnosed December 3rd of 21.

And then in January of 22 is when we discovered that it was metastatic.

Okay.

What did you know about that at the time?

Honestly, I didn't know much.

I just knew that the medium for survival was five years, so I've had that in my mind for the last five years.

Probably impossible not to a human being.

Correct.

Sure.

Yes.

Okay.

And, you know, I was very fortunate to be put in the hands of Doctor Aragon, who is an amazing oncologist.

Her team is phenomenal.

And they actually made me understand and become aware that I could live through this, that when this treatment stops, there's more behind it.

They have an arsenal of medicine now that will step in in take up.

It'll start taking over from where this medicine left off basically.

Okay.

Can you describe what the treatment has looked like and what you're doing today?

Taking care of through the timeline.

So I am on what's called Cascade and is, three weeks on, three week off medicine.

It's an oral pill.

I also take a, hormone blocker called letrozole, and I do that consistently.

And I've been very I'm very, very lucky.

I will say that that my side effects from it have been very minimal from the get go.

So that is helped me be a thriver.

Right.

It hasn't.

I'm able to work, I'm able to live my life, and throughout it, when I first was diagnosed, I would go every three months for scans.

And then as time went on and I was doing great, I went to six months and just recently, Doctor Reagan has given me the okay to not have a bone scan any longer.

That I only have to do a CT and, because I am doing so well that there are no signs of progression of this disease.

The tumors that I have, in my breast have shrunk the lymph nodes that were in my sternum and under my, in my armpit have all shrunk to basically, they can't tell that I have breast cancer anywhere else except in my breast.

That is remarkable.

We'll talk to the doctors in a moment here.

It's a remarkable success story.

And now that you see, you know what your own life has looked like, do you think about a timeline in your life?

Do you think, you know, initially you were thinking, five years right now, is it just an endless possible future here without any kind of demarcated timeline?

Absolutely.

Yeah.

I, our son's getting married next year.

Like, honestly, even I wake up every single day, and I don't even think about it.

I just live my life, you know?

And I plan for the future.

We have a new grandson, so I'm not letting this affect my life.

I am just thriving and living it.

You know, we're going to talk about trying to think of metastatic breast cancer or trying to make it a chronic disease that people live with, as opposed to, you know, the blunt language people use is the death sentence stuff.

So for you, do you already think of it as a chronic disease already?

I mean, is that kind of how it is in your mind?

Oh, absolutely.

Yeah.

I have a friend who has a heart disease, and I put myself on the same level as her.

Right.

She takes medicine every day to survive.

I take medicine every day to survive in.

It's just like a diabetic.

But that's how I view it is I have a chronic disease.

You have an amazing attitude and a spirit, and I have read that you are a person of faith and that has helped guide you.

Absolutely.

Yep.

You know, in the beginning, when I was diagnosed, yep.

I had my moments.

I cried out to God, I screamed, I yelled, and then I found peace.

And I find that prayer really helps me.

And my church community has been great.

But in those times of doubt, I will go and I'll pick up my Bible and I'll read a verse.

And it helps me in.

One thing that I have learned from this is that I cannot worry about what's to come.

None of us can write.

We don't know what tomorrow brings.

And that's how women with metastatic breast cancer have to live.

We have to live as if tomorrow is just another day in our life, because not one single person on this earth knows what is to come tomorrow.

When you hear about the debate about legislation and lawmakers, you just gave me a look.

You apparently have an opinion about this.

I do because, well, go ahead.

Yeah, I'm fortunate I'm working.

I have a very a good job.

I have good insurance, but there might come a day when I can't do that any longer.

And the fear is that, how is that going to affect my family financially.

Right.

Like my children are grown.

I have, you know, my husband and I, he has a good job.

But there will come a time possibly where I'm going to need that.

You know, those services to me and to have to make me wait, that could hinder my treatment.

I might have to stop my medicine because I can't afford out of pocket.

I'm not going to say how much my insurance company is billed for this case.

Golly.

But I do know it's astronomical.

So to worry about, like, if I ever have to stop working, where is that money going to come from to continue me being able to thrive in life?

I just don't think it's fair to women like me.

We're in this weird time where almost nothing is bipartisan, and it seems like a slam dunk bipartisan issue.

So that probably makes it even stranger that this is being held up by a member of Congress who, to be fair to the congresswoman, she's invited on this program.

She's never taken us up on that.

But the invitation will continue, and I hope eventually she'll change your mind, I promise, if her staff is watching, if she's watching, I promise you she would be treated fairly and have plenty of time to explain her opposition to this bill.

She's running for reelection.

This is a congressional election year.

She was invited on this program because anybody who's on your ballot is invited to speak at length about their reelection campaign.

So she turned us down on that as well.

So I want to be able to talk about it, and I want to be able to talk about where people disagree.

Do you think that we're missing something with this, with her or.

I mean, what do you think this is about?

I don't understand her fraud, right.

That is yeah, that she says she's worried about fraud.

I mean, because every single scam that I have, Doctor Reagan looks that over.

There are other doctors examining that with her.

And if they're going to tell her, no, there's nothing there.

So how can you say that?

It could be fraud when we're going through all of those testing and everything bloodwork, exams, all of that is the proof.

Go ahead doctor.

Okay, so here's another word I'd like you to define.

She is a representative, right?

Represents all women.

If 1 in 8 is the number we give for lifetime risk of breast cancer.

She is supposed to represent all the women in her constituency.

Is she representing them?

If people if this amount of people try to get her to at least meet and do this, who is she representing?

She's not.

She should not be representing herself or her pride or whatever obstinacy is involved.

If she's representing the women in her district, why isn't she representing their wishes?

Well, so I'm late for a first break here, but I'm going to try to once again channel what she might say here, because the congresswoman is not here.

She might hear some dissonance when Christina says metastatic breast cancer patients don't have two years to wait.

But then she hears the doctors say, we're trying to turn this into a chronic disease and not a death sentence.

She might say, well, maybe you're wrong, Christina.

Maybe there is a lot more time than you're portraying.

Well, I guess I would argue with that in the whole idea of having that five month wait period is to see if somehow this person comes out of their disability.

When you are diagnosed with metastatic breast cancer, you automatically qualify.

So this waiver, it doesn't even apply anymore.

That's a breakdown in the Social Security Act.

And you know, we can't reform that whole thing.

But I think just realizing that, yes, we could treat this as a chronic disease, but that doesn't mean it's going to go away.

And that's the idea on wait times.

So let's get rid of them.

Yeah.

Go ahead and just say, you know, Karen's case is not the usual that we see.

There's other types of breast cancer where the median survival is like a year and a half.

So we have not been able to turn this into a chronic disease.

So okay.

So yeah, part of why Karen is here is to show you what is already happening with some patients, what is possible.

So what is hopefully there will be more of your type of story in the future.

And I know the doctors are working at that.

But what I'm hearing from you, Doctor Reagan, is that's not a guarantee right now.

In fact, there's a lot of there's a range of outcomes and some are tragically lower.

Absolutely, absolutely.

I mean, I'm delighted Karen is doing so well.

But as she mentioned to you at the beginning, the median survival for her type of breast cancer is five years.

And the median time to somebody on the treatment that she's been on is usually two years.

So she's an outlier with that.

And there are patients that the drugs don't work at all.

So you know, we have made progress.

But no way are any of these solid tumors that are metastatic chronic diseases right now.

Now let me close the loop on one thing, and then we'll take our first break.

And then we're going to come back and talk about where treatment is going and what the doctors want you to understand.

We're really glad that Karen Hill, who is a breast cancer thriver, is with us.

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

Have you ever met have you met Claudia Tenney in person before?

Only on a zoom.

On zoom?

You've not been in the same room?

No.

Okay.

And one time, that was one time with me.

And I've met with staff in person and on zoom several times.

Okay, I ask because members of Congress are busy.

It's easy for me to say someone else who's not me should do X, Y, or Z or run their lives or their schedule in a certain way.

But you do wonder at some point if there is a respect for disrespect and not just being willing to have a one on one conversation, or to right or to to to meet with people directly.

So, I mean, that's why I ask my schedule's openly available for her.

You're willing to rework the schedule?

Yes.

And I could include my phone number right here if I need to.

I mean, like, if you got, like, a date night at the little theater, you cancel that.

I would cancel that.

I would reschedule it.

That's a good one.

Now, okay.

I appreciate you being here.

Let's take this only break.

We're going to come right back.

We're talking breast care and the very latest and not only legislation that would perhaps help patients, but what kind of treatments are coming in the future.

Let's get that break.

We'll come right back.

Support for your public radio station comes from our members and from Mary Carrie Ola, center, proud supporter of Connections with Evan Dawson, believing and informed and engaged.

Community is a connected one.

Mary Carrie ola.org.

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Hello.

You can join the chat there and we'll work in some of your feedback.

And for example, this is from Peter in Henrietta.

He says, is there a reason why metastatic breast cancer should be treated differently than other metastatic cancers by Social Security and Medicare?

Panel someone want to handle this one?

I do think that that's another consideration the congresswoman has brought to our attention.

And I can just say I'm not opposed to it, but that's not what this bill is.

And that's not what we've been supporting for six years.

So let's get started with this.

I think, you know, breast cancer is one of the most common cancers.

It's a very common disease.

So okay.

And I would think getting this passed for breast would ease, would make it easier for prostate and all the others.

Exactly like to be a trendsetter who is worried about men.

It should be for everybody.

It should.

Ideally, all of this should be for everybody.

But if we were close, maybe we were close.

We can get breast, which is a high number of cancers.

Then the others should be easier.

One would I agree.

So let's talk a little bit more about, first of all understanding what metastatic breast cancer is.

And when someone who is not a doctor hears the word metastatic.

I'll tell you what goes through my mind.

I have this idea that when cancer is diagnosed, the first hope you have is that it has been contained to where it started and it has not spread, and that the word metastatic metastasis means it has spread.

And there is an assumption, I think, that a lot of people have that when it does metastasize.

There's only so much you can do for a person because it has spread so far that it is not really stoppable at that point.

What we're hearing from our guest this hour is that as much as it has spread, the outcomes are better than certainly I thought that a lot of people thought.

But I want to get some definition.

So, doctor, are we can you first hear what do you want people to understand when we say metastatic breast cancer?

I mean basically what it means.

That is what you said.

Even it spread to other parts of the body.

In Karen's case, it had spread to lymph nodes in her chest.

So we did document that.

We did a biopsy and then we confirmed it was metastatic.

And the conversation I had with her when we discussed that biopsy was that you have metastatic disease.

It's not curable.

However it is treatable.

And a goal across all of cancer is to turn these metastatic cancers into chronic diseases.

And like we were talked about earlier, some in some cases we've done that, but most we have not.

So the bottom line is that Karen is going to be on treatment for the rest of her life at some point, hopefully no, no time in the near future, her cancer may become active again.

The good news is that we have a lot of agents that are available to treat if it does come back.

In fact, this year, unbelievably, there's been five drugs approved for Karen's type of cancer since January, which is this is unbelievable.

Now, some of them are more effective than others.

And I think the other thing that's really important here that Karen alluded to is the fact that they're very, very expensive.

All these new drugs.

But I think there is hope because I think we are improving outcome.

You know, we talked about that the median survival for the type of breast cancer that Karen has is five years.

It's probably going to be much longer than that in the next few years once these drugs kind of come to fruition.

Are you all familiar with the story of former Senator Ben Sasse and his cancer in the last year?

So producer Megan Mack fact checked me on that.

Well, actually, I don't even remember what type of cancer he has.

So about a year ago, former Senator Ben Sasse, who had become a university president and very, very prominent conservative and sort of pop public intellectual, announces that he has cancer and that they thought maybe 3 to 4 months of life left is what he had, because in his words and the interviews he's done, he says it was metastatic.

And when they did the scans, he said, I lit up like a Christmas tree.

There were tumors everywhere.

And my goodness.

And it is amazing how he has done in the last year here.

I want to make sure I'm telling you the right kind of cancer.

He had stage four pancreatic cancer.

So stage four pancreatic cancer.

He is still alive.

He's still doing interviews.

He's still hosting a podcast.

And, it doesn't mean he doesn't have a lot of bad days, but they did a lot of tumor shrinking.

And they didn't magically wipe everything out.

And I don't know that we'll sit here a year from now and be able to say the same thing about how he's doing, but it is been amazing to see what the best and most aggressive treatment can do, even in a case like that.

So I just bring this up to say that's been on my mind when I think about metastatic breast cancer or metastatic cancer in general, and you all do amazing things, you all really, really do amazing things.

What does the future of treatment look like?

Where are we?

Not right now, Doctor O'Regan, that we could get to?

Well, I think it just along with what you were saying, a very, very important part of it.

This is clinical trials.

So the drugs that Karen are on, they were basically compared what this the current standard of care were found to be better.

All the drugs that I was from the five that have been approved this year all went through very rigorous clinical trials.

So I don't know what the senators on, but, there are clinical trials out there for very exciting drugs for pancreatic cancer right now.

So if you have metastatic cancer, I would very much encourage you to ask your doctor about a clinical trial.

Interestingly, Karen actually had signed up for a clinical trial before we knew she had metastatic disease.

And then she wasn't eligible.

But I'm pretty sure that she would sign up for a trial going forward if if there was one that was available for her.

So I think that is and by the way, Derek, Sandra said, or whatever that is direct.

Direct.

So he's on and yet in her too.

Yeah.

So so they're very interesting drugs.

They're what are called antibody drug conjugates.

So there's an antibody part that targets a protein on the cancer cell.

And it's attached to a chemotherapy.

And the chemotherapy gets deposited directly into the cancer cell.

So it's kind of replacing chemotherapy.

So when it works it can work very very well.

And that actually would be an option for Karen down the line.

It is a little bit more more toxicity than what she's on right now.

Because that's the other part of this is that for patients of metastatic disease, we want to pick treatments that are going to work, but they're going to not hamper quality of life, which is the case with Karen.

Yeah, I mean, if you missed it earlier, Karen said your quality of life is good.

It's great.

It's great if you're a metastatic thriver and you really don't know, you don't really have side effects at all.

I've had a little, joint pain, in my knees, but other than that, and I'm getting treatment for that, so, That's it.

So, Doctor O'Regan, if we're sitting here in ten years and all of the advances that you think are plausible, and I'm not talking pie in the sky science fiction, I'm talking about actual advances, whether I can help or whatever else comes along.

Where are we going?

Eventually in your work that will change the outcomes?

I mean, I think it's all about keeping these metastatic cells kind of quiescent.

You know, we keep having as as a chronic disease.

So another big advance we've had is immunotherapy, where you basically turn the body's immune system onto the cancer that's been around for decades.

But it only really came to the clinic really recently.

That's been a complete game changer as well, because some patients, even with like cancers that usually don't do well when they respond to these immune therapies, they can respond for very, very long time, can even stop the treatments, and they continue to respond.

So I think people are still going to get metastatic disease, but I think we'll be able to control that much better and they'll be able to live with their disease.

So that's that's where we need to go basically.

And I know we're going to talk about this, but obviously a key part of this is if you picked cancer up early enough, you know, you hopefully won't develop metastatic disease.

And there's a lot of work being done in that area as well.

In a moment we're going to talk about screening.

And doctor O'Connell is ready.

We always talk about screening with her.

Let me read an email, from Charlie, who says even the idea that a doctor and a patient would cheat about metastatic breast cancer is an unconscionable excuse to deny coverage.

I lost a sister and a grandmother to breast cancer.

Fortunately, they received great care.

But that was 25 and 40 years ago.

The reason the congresswoman will not appear on your show is because she is flat out wrong, and she knows it, and she will be put on the spot to justify her ridiculous stance.

She loves her job and Trump will crush her if she turns against him.

It's shameful.

That's from Charlie.

I mean, that's Charlie's speculation, not mine.

And I don't know if the president of the United States has anything to say about this.

I don't think this is not like a Trump mandate that, Claudia, ten year Republicans oppose the legislation you want to see.

Is it Cristina?

I don't think so.

I am not.

That's above my pay.

Yeah, yeah.

Well, I. Let me just say this, Charlie, I understand why in today's politics, you think that anybody with an R in their name is going do whatever the president wants?

I don't have any information that says Donald Trump has weighed in on metastatic breast cancer.

I think this is up to the congresswoman.

But let me say that the two bills we were going to discuss for supplemental screening are bipartisan.

And that was Amy Klobuchar is on one.

And then there's one that has Katie Couric.

I mean, it's wide support.

Both of those bills that I was going to mention, one of the one you've talked about and the other one to find find it early act are both part bipartisan.

So I really think that that answers the question.

It's not bipartisan.

It's personal.

Okay.

So for for you, doctor, what kind of what do you want people to know about screening.

You heard your colleague say the earlier we get this the better have screening.

I always say, you know, if we can find it before you feel it.

Because generally if you don't get screened or missed too many screenings, you'll end it.

If you if you are one of the people who have been chosen to get breast cancer and no risk factors, you know the people who think they'll never get breast cancer if you're one of those people, if we don't find it early enough by screening, you're going to eventually find it.

So, that's where I want to mention that, risk factors are not enough to decide.

Apparently.

Still, about a third of women who don't get screening or missed screening don't realize that they should be getting it every year.

So let me just say for the record, that it is fully covered by the original Affordable Care Act that every woman over the age of 40 gets an annual mammogram with no cost sharing.

That's free to her.

It's the only, scan we can guarantee is free to the patient, meaning no cost sharing, because several of the other legislations that went through, including Kathy Hochul.

January 1st supplemental screening only applies to insurances that are based in New York State.

And so let me just start again.

The screening mammogram is always covered.

But when the screening mammogram says you have dense breast tissue, and that's almost half of the women who get a mammogram have dense breast tissue, either heterogeneous, which is level C, or D, and there may be a little sentence saying you would benefit from supplemental screening.

But then the thing is that that is not free, that you'll go and get your supplemental screening and you'll get a big fat bill unless your, insurance is based in New York State.

So two of the largest employers in Rochester, at least two of the largest employers in Rochester are are self-insured.

So they cover federal mandates, not state.

So Kathy Hochul slot does not apply.

So when people are told you need supplemental ultrasound, they still need to call the number on the card, even if it says Excelsior Aetna, because coverage doesn't mean free, it might be a copay or a deductible.

So that's important.

But we think it's very important because you pick up an additional couple of cancers per thousand with the ultrasound after you've looked at the mammogram.

So the mammogram picks up with, say, five per thousand.

The ultrasound on top of it might pick up another two per thousand, and then it goes on up with other tests that we might suggest.

But the two common ones are mammograms and ultrasound.

And what about contrast.

The yeah that comes up next.

So that's one of the newer things.

So when people have high risk we might and the calculation is done and they're recommended for an MRI.

That's a contrast exam.

But that's an MRI contrast a cheaper version and easier to get.

No I can't say that.

The other type of contrast exam is contrast enhanced mammo, which people are beginning to come up with or be suggested for.

Again, it's it's contrast.

So if you like to imagine a mammogram is a static imaging and then if you put contrast in, you get a little more dynamic appearance, which means abnormal blood flow, which might be a cancer will happen.

So a contrast mammo definitely adds a couple more cancers to the screening.

An MRI is really the gold.

However, if everybody could get an MRI every two years, we could skip the rest.

But everybody can't.

A it's expensive too.

There's not enough scanners.

And three I don't know.

You have to have a 20% lifetime risk to be covered right now.

It's still not free though.

So remember coverage doesn't mean free covered means some form.

So if you look at the website, it says, yeah, it's covered.

And you say, how much do I have to pay?

It could be quite a bit.

So back it up here.

What age should we start with?

Screenings.

Okay.

So at age 40 now you should ask me what age should we finish?

Because I had an 86 year old lady and this week with a big cancer and she said, you know, I was told to stop screening.

Well, I so I have a question.

What should we finish?

Well, that's thank you of it.

So the Uspstf task force will tell you age 74.

But I will tell you that's awful close.

So I'm thinking and then they say if you have a lifetime of 5 to 10 years, well, which of us knows that we have a future lifetime expected lifetime of another five.

The older you get, the more like if you're 75, you're probably going to make 85 unless you're in bad shape.

So the answer is as long as you're healthy enough to take the treatment.

So if you're 80 and if you were diagnosed with the cancer and you're healthy enough to get surgery, then you should have it.

If you're 80 and you're on oxygen and can't get out the wheelchair and stuff, and you couldn't imagine you couldn't tolerate the surgery, then probably not.

But I mean, finding a small cancer in an 80 year old means that it won't continue to grow and perhaps become symptomatic later.

And so there's no use that all 74 year olds I know, 80 year olds are the same, to state the obvious.

Yeah.

And you don't like just looking at a number?

No, the number does not work.

I mean, it's a person and is covered.

The thing is, the Affordable Care Act didn't put a top on it.

So if an 85 year old comes in for an annual screening, they're completely covered interest.

And when I told an 85 year old recently, you know, you could come every two years if you like, she thought I'd given her a gift.

I can skip a year.

Oh, great.

Well, you tell my doctor that.

And I said honestly, she was.

She's going to go 90.

This lady, she's a woman of faith.

She's actually a religious sister.

She's she's good to go.

She's I'm going to she's going to 100.

But I told her you could skip a year.

It's okay.

My step grandmother's 98.

You might think that she's 78 if you met her, and I. I think she's in great health.

This is a great example that age as a number is not always the best indicator.

So if you can tolerate.

Yeah, if you can tolerate if you want to, if you want to skip a year when you're over 75, you know, why did I think insurance stopped at 74.

Insurance doesn't show up at the Affordable Care Act.

Actually says starting at age 40 every single year.

So people sometimes think every other the USPS task force went to, you know, they still think every other year.

Well, it gives it longer to grow if you're bad luck.

You know, every two years.

Yeah.

Is better than never.

But I think every year gives us a better chance to pick up some small changes.

All right.

So I was say, doctor, you know, just part of the argument is that in older women, you pick up these very small estrogen receptor positive breast cancers that may never have been clinically manifested like the prostate.

Same with prostate cancer.

That's kind of the the the argument against.

Yeah that's called an and that was a thing we defined before.

It's called overdiagnosis.

But what it really is is overtreatment.

It's an actual diagnosis.

And then if that person has a teeny tiny like group of calcium and you say, look, we can follow this every six months and then every year, and if it starts to change, you can take it out because there is a move towards less treatment of the low grade non aggressive cancers.

But if some woman comes in with a big thing that's weeping from the skin, well you know that's not screening of course.

So that's not.

But the diagnosis of overdiagnosis means really it's really overtreatment.

We do a diagnosis.

We never tell somebody you've got cancer if they don't.

So that would be overdiagnosis.

That would be a yeah.

But it's you know, the definition is misleading.

And you say, well, of course we don't want to treat cancers that are in cancers, but we also don't want to treat cancers that are so low grade that they would never cause any symptoms or death in that person's lifetime.

That's the definition.

And if you see a small group of calcium, they're not going to kill.

So you can definitely I'm not saying I agree with it, but that is the.

Yeah.

No, I need you to.

And if anybody thinks that they're tuned in to radio Erin because of the Irish voices, I couldn't tell you that Irish we represent, I don't know, Scottish, by the way.

I try to fight here a real topical thing.

We represent international medical graduates.

So it's a dirty word now.

It's like foreign graduates.

But we both were great.

We were both educated in Dublin and we haven't lost our accents.

Okay.

So when we come back from our only other break this hour, I am going to ask all four of our guests to weigh in on a question that comes up quite often because we've been talking about treatment and diagnosis down the road.

But for if you've never had a mammogram and you're nervous, if you're concerned about if it hurts or if you just don't need it, or you're worried about what the results might say, are you worried about false positives?

I want all of our guests to weigh in on what you ought to know if you are hesitant.

Because sometimes that hesitation is, Well, they they've seen it.

They've talked to patients before.

So we'll talk about that.

And there's a lot more to cover with our guests.

We are talking to doctors Ruth O'Regan and Doctor Avice O'Connell are with us.

Karen Hill is a metastatic breast cancer thriver and from the Breast Cancer Coalition of Rochester.

Christina Thompson, the executive director, is here.

We'll come right back on.

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Oh, welcome back to Connections.

This is Evan Dawson on this Friday afternoon here.

And, maybe we should have just kept cameras rolling on the mic side here, but just conversation rolling right along here.

Right before the break, I was just mentioning to our guests that there are going to be people who are hesitant.

And when we talk about breast cancer, we're primarily talking about women.

But Doctor O'Regan said, you've got plenty of male patients as well, right?

Well, maybe not plenty, but I've got several of them.

Yes, several.

Yeah.

And I think, you know, any man that has a family history of breast cancer, prostate cancer, ovarian cancer in the family, you know, you should think about getting genetic testing because Brca2, the Brca2 gene, is associated with male breast cancer.

And it's treated very they're a little extra, extra step positive like Karen's is and they're treated very similar to, to female breast cancers.

And they usually do fine.

But Christina, you have worked with all kinds of folks in the last decade.

As your life changed and then you came on this path and you became the executive director of the Breast Cancer Coalition.

When you meet people often, often it's a woman who's wondering, is it going to hurt?

Do I really need it?

What's the conversation like?

What do you tell them?

Who have people who've never had that first mammogram?

Well, there's so many things that go through my mind.

You know, we were just talking about when do we finish, you know, what age do we finish having mammograms?

I, I still struggle because I was 39.

I'd hadn't had that screening mammogram at all.

And I was diagnosed with stage three aggressive breast cancer.

I mean, I think the bottom line that I really want to get across to everybody that's listening is breast cancer is not just one thing.

You just don't get breast cancer.

What I have is so completely different than what Karen had.

And, I also think that, you know, you you raised the question earlier that maybe Congresswoman Tammy, thinks that because Karen is thriving and we don't need this legislation passed, all cancer is is determined by the tumor biology and Karen is thriving, and we're so glad to see it.

But that I still see a very, active group at the coalition called Common Ground, which are people living with metastatic breast and gynecologic cancers and there's a lot of them that are struggling.

I've seen a lot of people, we've lost a lot of people.

And, that should definitely not be a stopping point for tiny.

Well, Karen Hill, if you meet someone who says, I don't know if I'm going to go for a mammogram, I don't do I really need it.

So first off, right, we go through life and we're given things free, right?

This is a free exam.

Why not take it?

It's free.

Right.

Not to get too personal, but my daughter was 19.

She found a lump, and at 19, she went and had the exam.

We didn't just brush it off, you know?

So it it's there for you.

Take advantage of it.

It's going to save your life.

Doctor O'Regan, what's the youngest patient you've seen?

I've got, like, a 24 year old right now.

I actually have three patients in their 20s, which is just unbelievable, because, of course, one of the things is, you know, they don't get mammograms.

They're not educated, but also they tend to very dense breast tissue.

So mammograms are a little bit less effective.

But I think encouraging people with mammograms is so important because as I tell my patients, it doesn't matter what kind of breast cancer you have, if it's picked up early enough, it's going to be curable.

It won't come back.

Right.

And then I have to quote a very famous breast surgeon, Monica morra, for this one, because when people say it's painful, she always says, you buy new shoes and wear them.

And that's painful, right?

It's more painful than that.

So.

So that's what I would tell patients.

Yeah.

And doctor O'Connell had a I think you had a knowing smile on your face when Karen said they're free.

Well, actually some people are worried like the first mammogram is free and then we call them back.

1 in 10 people are called back and it's not free anymore.

And so they worry about then you're going to call me back.

You always do.

And then you always say, no.

What if you get it all back?

There's a reason why 1 in 10, I call them back to have like a tea party and telling them to paint.

I know, but most of them are going to be okay, which is a reassuring thing to say.

Okay, actually, let's say that again.

Even for the people who do get a callback.

Oh, the vast majority.

So I usually have the numbers here, but I mean, 1 in 10 get called back.

Like at least half of them are told, oh it's nothing.

It's overlap.

Your good.

Okay.

About two out of the ten would get a biopsy.

And the majority of those are still going to be benign.

So for some patients who are worried hey if you call me back and it's nothing, then there's I'm worried I get all the stress.

I may have to pay bills I can't afford.

So what do you say?

End at the end of the day?

Then you have to.

Well, then you have the reassurance that you don't have cancer.

Certainly pretty bad.

I got called back my first time for sure.

And you get scared?

Yeah.

I was ready to take an executive rest on college just right.

Yeah, I know, and we know plenty of doctors, including breast doctors who have breast cancer, so family history doesn't count.

You did all the right things.

You know, you're you're breast fed.

I used to say I breast fed everyone, and I'm like, oh, no, I breastfed my all of mine and not everyone.

And, you know, you did all the right things and you kept it healthy and you still can get it.

I did want to go back to one thing.

Most of Ruth's patients, the young ones, they felt it.

My appeal.

And this used to be a big topic in the past.

A young person feel something.

Don't think it can't be cancer because you're too young.

Don't think that because and come in and will tell you to fibroid an omen.

That's great, but don't assume.

Don't ask your friends what?

Oh, I had that and it was fine.

So you don't let your friend's experience guarantee that you're okay?

Just it's easy.

If you're under 30, we might just do an ultrasound, not even do a mammogram because they're less valuable.

So don't ignore if you feel something, do something.

Let me try to interpret this too, because if someone in their 20s is hearing this, you're not saying if you feel something, start panicking.

It's probably cancer.

What you're saying is, it can be a lot of things, but don't assume anything.

Mostly it'll be benign.

Mostly it'll be benign.

But don't make the assumption.

Just make sure that, you know, go take that step, get an ultrasound.

Because that would usually be the first step.

And the ultrasound can usually answer it might be just tissue because it's a hormone time of the month, whatever it might be a fiber a normal, the most common mass in a young person.

Or it could be a cyst, which is less common.

But yeah, most of the things would be benign.

But don't take a chance because, you know, don't take a chance.

It is important because, I mean, there's no question I think Christina would agree with us.

You know, younger and younger patients are getting breast cancer.

That's another topic.

So first of all, more breast cancer patients are the death rate from breast cancer is going down about 1% per year.

The A the number of young and young meaning under 50 I think are under 40 anyway.

Either one the number of younger.

And that's the huge is the hugest.

Not good.

The biggest question we should ask is why are younger people getting breast and colon and other cancers?

They are.

And they're not all people who live on junk food and did did anything.

They didn't do anything wrong.

There's got to be something.

Is it pesticides?

Is it plastics?

If this is where I could do something more study.

If I put in the last several thousand, 20 to 30 year olds with breast cancer and and ask the right questions, the computer can run them in no time.

Is there some common thing that we're not picking up?

You'd have to write very careful questions, but, I mean, we've got to find out what it is that's causing young people to have breast cancer so early.

Okay, so let me I'm going to get back to your emails in just a second.

In the event that you do get, positive, you may get in touch with the Breast Cancer Coalition.

What do they mean to you?

Everything.

The very first few days or weeks after I was sorry.

I was down.

I didn't know what was to come.

And they brought me back up.

They one day, a knock at my door.

There was a gift package from them.

It was incredible.

It just lifted my day.

It was just them saying, we are here to help you.

We are here for anything you need.

They have an amazing mentor program.

Early on, I was paired with another woman who is going through the same treatment and diagnosis as myself.

In five years later, I am still her friend.

We have, you know, we check in on each other for scans.

Her cancer progressed a little bit.

I was there to help her, you know, talk her through it.

We pray for each other.

So just having that come out of the coalition has been amazing.

And all the programs they offer, I mean, just amazing things they have, you know, lunches that they offer for specific groups and newly diagnosed in younger patients.

It's just an amazing, amazing organization.

Christina.

I mean, I've seen it myself.

I do have a personal connection to a thriver.

And, really, I mean, I can only speak for myself, but, I mean, I, I want to just affirm what Karen is saying.

It's, no one wants the diagnosis, but it's pretty remarkable the work that you do.

Are you seeing younger patients too?

Mean?

Yeah, yeah.

It's scary.

We implemented our Young Survivor discussion group, in March of this year, and it's really well attended.

But I, you know, I'm so glad that Karen is here to share her experience utilizing the programs and services.

And I spoke to someone earlier this week who's newer to the coalition.

And when I got on, you know, I could talk about this stuff for hours.

But when I got on to the legislative piece, in the funding research piece, she said, wow, you guys really are the full 360.

And I'm like, yeah.

To your emails, Roger says, just a reminder, men can get breast cancer.

And we briefly touched on that a little bit earlier.

Roger.

But they're absolutely.

Yes.

Right.

I mean, I mean, the idea that doctors.

Yeah.

No.

Absolutely.

Yes.

But obviously it's much less common, than in women.

There's no screening for it.

But like, like like I mentioned before, you just if you have a family history, think about genetic testing.

Brca2 mutation is very associated with male breast cancer.

Okay.

Yeah.

Roger, it's very fair.

Thank you very much for that.

In a moment, I want to ask the coalition about other legislation, but let me read one more email on the subject of the Metastatic Breast Cancer Access to Care Act, which has not passed.

It was every year since 2018.

It gets a lot of congressional support, but not enough to get it over the line, especially in committee, where a powerful person in committee is one of our local members of Congress.

That's Republican Claudia Tenney.

And Claudia Tenney is the only New York member of Congress in the state, Republican or Democrat, who who opposes this single?

The only one, only out of 20 something.

So it has not gotten out of committee.

And Mary, who says, I'm a breast cancer thriver thanks to Doctor O'Regan and other medical folks at the Pluto Center, I'd appreciate this panel's advice on the best medium and message to Claudia Tenney, such as including specific language about the name of the bill and what her action should be.

My best advice?

Please do so.

And everybody else that you know, especially constituents.

But reach out to the Breast Cancer Coalition.

Info at BC dawg or (585) 473-8177 asked to speak with Helena, who is our staff co-chair of the advocacy committee, and she can get you connected, but we would appreciate the support.

Okay, there's other things out there.

Your committee is also interested in supporting legislation and policy that addresses environmental exposures very much and their links to hormone sensitive cancers like breast cancer, ovarian, prostate, thyroid.

Tell me a little bit about that.

Well, I think this is what doctor O'Connell was talking about.

What is it that is bringing these younger patients, in different cancer groups.

And I really do think that there's a lot of research that backs up environmental factors.

They're compounding.

They're coming at us from all directions.

It's the food.

It's the air, it's the water, it's the plastics.

It's it's realizing that in areas of high hormonal activity, like puberty, like pregnancy and lactation, that it's even multiplied to a higher amount.

And unfortunately, you know, if you compare the United States to Europe, where the standards of what they will not have in their products are really, really high, ours are extraordinarily low.

And I'm sorry, but if it's consumerism and if it's capitalism that is driving that and therefore affecting our health negatively, the government's job is literally to stand up and take care of that.

So I'm asking them to do so.

Okay.

And, perhaps also related to some of the issues we've spoken up today is Senate Bill number three, five, five nine.

That would allow a notice of dense breast tissue to be a determination of medical necessity for coverage of a breast ultrasound.

So doctor O'Connell can't give you all the policy specifics.

Doctor O'Connell could tell you if that's a good idea.

Well, it's what you just read out.

Is confusing, because the law, the, this would be the Kathy Hochul law from January of this year, which, allowed the supplemental screening with ultrasound when recommended by, by virtue of dense breasts, then that that ultrasound was covered.

But it's only covered, by the New York State based, insurances.

But wouldn't this make this know unless it's federal?

The, the the large employers of Rochester who don't have to obey the state.

So let me ask you separate.

Should there be a federal mandate?

Yeah.

Okay.

Absolutely.

You are there are states which are there are many states which already do that, that as long as so them.

Oh, that is the question of what medical necessity goes to the insurance company to decide.

So I will put at the bottom of report in view of this patient's very dense breasts, supplemental imaging.

I don't say the word screening because they don't allow screening.

Supplemental imaging with whole breast ultrasound is strongly to be considered.

I put it out there.

And usually insurance companies are like, well that's good.

No.

And then the insurance company says no, she doesn't have a 15% or a 20% lifetime risk.

She's only dense and Medicare just not acceptance as an indication.

Okay.

Thank you for the explanation.

Thank you to all of our guests.

I want to say, Karen Hill continued, thriving for you.

Thank you.

What an awesome story you're telling.

And I hope there are more people like Karen, thanks to people like Doctor Ruth, Oregon.

There probably will be.

Thank you for your expertise this hour.

Thanks for having me, doctor O'Connell.

Always a pleasure.

Thank you.

And our thanks to Christina Thompson and the entire team over at the Breast Cancer Coalition of Rochester.

Thank you for being here.

Thank you from all of us at Connections.

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