Living with Frequent Cancer Screening

Screening tests are part of life for individuals at high risk for cancer because of a genetic mutation or strong family history. Common screening tests include, mammograms, ultrasounds, MRIs, colonoscopies, skin checks, and certain blood tests. For many of the people we interviewed, screenings lead to biopsies for suspicious findings discovered during the screening test.  The specific screening “regimen” that a doctor recommends to a patient - for example, what age to begin screening and how frequently to do it - depends on the condition(s) for which the patient is at risk. This part of the website explores what people we interviewed said about their experiences with frequent screening. Additional information about particular screening tests can be found on our resources tab.

 

Heather, who has Lynch syndrome, undergoes at least half a dozen different screening tests each year.

Heather, who has Lynch syndrome, undergoes at least half a dozen different screening tests each year.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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You know, I walked out of there with a sheet of paper that listed, here's your seven annual screenings that you need to have done. And so it was a colonoscopy and an endoscopy to check colon and stomach. It was having a urine analysis done to check for bladder cancer. I get a endometrial biopsy every year of the endometrium lining, which is super painful and uncomfortable-- the worst screening I do by far. I get ultrasounds done that are looking at both you know the endometrium and my ovaries. I do a CA 125 blood test partnered with the ultrasound to hopefully detect a change with my ovaries, because ovarian cancer still remains one of the hardest to diagnose. And the biggest goal there was to create some kind of baseline, and be monitoring the ultrasound and bloodwork so that, should there be any change with my ovaries, hopefully, it will be picked up between one of those two. And then there's a recommend to do an annual dermatology appointment to kind of check out any spots. I started out also doing an MRI of my brain as someone with a history of migraines. And my mom's father, so my maternal grandfather, who is, I'm certain, the lineage in which this passed down. He died when she was five from brain cancer. And much later in life-- in fact, not that many years ago-- found his death certificate to-- the autopsy report actually listed colon cancer, which was not something we knew of prior. So they believe that it was actually colon cancer that metastasized to his brain, as opposed to vice versa. They had been treating the brain cancer, but because there's any amount of brain cancer and my history of migraines, they wanted to do a baseline MRI. So I did that the first year. And you know, there's some kind of perimeter things that kind of come and go. Maybe a little pancreas, maybe a little liver? But not really much screening development there yet, and not yet recommended to me as part of my Lynch screening schedule.


So I know that there's some work on maybe a pancreatic one that's being developed, and they kind of said it might be something that we explore and add on in a three- to five-year interim as opposed to annual screening with the rest of my stuff. But those, you know-- so six, I think, annually. The seventh one that I did was the MRI of my head. And so I now do all of them every year except the endoscopy, I do every other year with my colonoscopy. So they go into the stomach every other year, but my colon is every year. And I have basically assembled my team of doctors to do all this.

Whatever the screening regimen, people told us it can be helpful to have a trusted physician who has experience with the relevant condition, or another health care professional, like a “breast navigator” who can serve as “point person” to manage the tests, in order to, as Heather said, “[keep] it kind of all together.”

An important distinction is between preventive screening, which is conducted at regular intervals in an attempt to find pre-cancerous cells or early cancers, and diagnostic testing, which a doctor orders to investigate a specific symptom, such a new lump or suspicious bleeding. In addition, sometimes a screening test such as a mammogram may be done to establish a “baseline” that doctors can use in the future to determine if there are any concerning changes.

 

Steven’s breast cancer diagnosis came after he became symptomatic and underwent a number of tests.

Steven’s breast cancer diagnosis came after he became symptomatic and underwent a number of tests.

Age at interview: 67
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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And at that point, he said, “Well, I don’t,” he said, “I don't like this. I want you to go to [LOCATION] and have an ultrasound.” And so they scheduled that pretty quickly, like a week later, within a week. And I went in, and they said, “Well, we're not going to do an ultrasound. We're actually going to do a mammogram.” So I had the wonderful experience of knowing what women go through when they have a mammogram. And so I report it to the Breast Center downstairs at [LOCATION Hospital], went back to the clinic. And they came in, and they’d had a radiologist read the results. And then he said, “Well, we'd like you to come back this afternoon at 1 o'clock, and now we're going to do the ultrasound.” So I went home, and I came back and I did an ultrasound and went across the hall to the clinic and waited. And then they came in and they said, “Well, we'd like to do a biopsy.” And so my visit that started at 9:00 o’clock in the morning was now going to take the entire day because it took until about 3:30 for them to get me to do the biopsy. And they biopsied my tumor, and they biopsied a sentinel lymph node.

As medical knowledge evolves, recommended screening regimens may change. Changes in health status may cause an individual’s regimen to be adjusted. After being treated for breast cancer, Denise, who has a strong family history of cancer, started out with screening every three months, then “graduated” to every four months, and later still to every six months. Once she reaches 5 years post-cancer, she’ll have the test only once a year. Barry has shifted from having colonoscopies every 10 years to having them every year since his doctors told him he’s at increased risk.

Catching It Early

Even a “preventive” screening test may not prevent disease. Besides colonoscopies, which have the potential to remove pre-cancerous colon polyps before they become cancer, most screening tests are not designed to prevent cancer. Instead, they allow for the cancer to be detected at an early stage, when it is more likely to be treatable.

 

Asante explains her realization that a mammogram can’t prevent breast cancer; it can only promote early detection.

Asante explains her realization that a mammogram can’t prevent breast cancer; it can only promote early detection.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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And I really, honestly, naively thought that being up on my screening would prevent me somehow from getting breast cancer. And I think that's the missing piece. That's the piece that was missing for me. I said, oh, I go every six months. These people won't let me go. You know, and I would even make jokes about it. I would say, they're so on top of me. They're always on top of my breasts. Like, I even made jokes about it. And so I feel like people need to understand that even though you do go for your screenings every six months, it’s the finding it in-between. So if you didn't go six months and you waited a year, your breast cancer, if you did get breast cancer, would be far less treatable than it would if you found it when it was small.

Yeah that's one thing I want to make clear to people, is that, you know, your screening is not, it’s not prevention. It's early detection.

The hope of early detection, of “catching it early” or “before it gets too aggressive,” focuses people on the timing of screening. Jack was highly motivated to “[keep]…to the schedule” of colonoscopies recommended by his doctor because he did not want to “give any polyp time to dig in.” Mea, who has a polyposis syndrome, was “freaked out” when she had to miss a screening because she was pregnant. Terry resisted annual screening until he learned the hard way what a difference several months can make for someone with Lynch syndrome: “They said, ‘no, once a year because it can spread’…and that’s what happened with me…everything’s fine—within a year, three or four months, it spread quite a bit.”

For people who have repeated cancer diagnoses over time, “catching it early” can become an even more powerful motivator. Paul, who has a polyposis syndrome, confessed that he “didn’t follow up very well” on his doctor’s screening recommendations after being treated for colon cancer, but has become “much more proactive” since being diagnosed with a new cancer in his stomach.

What It’s Like Being Screened

Screening tests differ in terms of how easy or difficult they may be, and of course individuals differ in their experiences of the tests. Some tests, like colonoscopies, may require extensive and somewhat unpleasant preparation.  Others, like mammograms, involve putting the body into awkward positions.

 

Jack, who has Lynch syndrome, describes what it is like to have frequent colonoscopies.

Jack, who has Lynch syndrome, describes what it is like to have frequent colonoscopies.

Age at interview: 65
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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Can you talk a bit about the experience of getting a colonoscopy? And if that's changed in any way over time?

Well, that's profoundly unpleasant. Not profoundly, it's unpleasant. The prep for it, the colonoscopy itself. The prep for it when you have to drink all that stuff.

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But you know, that's one day. And it's something that is tolerable. And I am looking now, instead of drinking a gallon of stuff, my son got a half gallon. And you need to drink so much of it. And for the first time I thought a little bit, it burned my rectum. I don't know why it would have done that. But it really nailed me and changed my bowel habits for a good month afterwards. That I've never had before. So there are, again, until you experience them, all the side effects and all kinds of things, they don't tell you about them or predict them till you've had them. And then for the most part they don't really know, the medical staff don't really know how to deal with them or what they are unless they've had them themselves. And so that's one more constraint that, I'm pretty sure for people there are side effects. And I think that it isn't powerful, near powerful enough for me to not do it. I'll prepare differently for my next colonoscopy. I'll expect it a little bit more. But it won't change my willingness to one done I don’t think. But conceivably, that could be an obstacle to getting a colonoscopy, especially when combining it with, well, “I don't have enough money to do it” and, “I don't like doing it.” I fear that for a good many people that may well be an obstacle.

 

Janet S. is uncomfortable during an MRI of her breasts, but also finds something to laugh about.

Janet S. is uncomfortable during an MRI of her breasts, but also finds something to laugh about.

Age at interview: 55
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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So we went in for further testing. I had an MRI done, and, and that, that was a very interesting experience. I don't know if anybody's shared with you, or if they did them the same way. But I had to lay on my stomach and I had to put my chest, I had to put my chest in this metal thing that had cut-outs for my breasts to go through, not, so the radiation wouldn't affect the rest of my body, but they could also have just a clean image of the breast tissue itself. And I had to just, you know, if you've ever had an MRI, you have to lay perfectly still, and that’s, it's hard to be perfectly still for a long time. It's uncomfortable. The noise and the closeness, that stuff doesn't bother me, but the being still bothered me quite a bit. And I just kept thinking, I am here to zero in on breast cancer. I have ca-, I still haven't had, I can't remember where my biopsy came in, whether it was before or after the mammogram, probably before. Probably before. But I kept thinking, I have cancer. I can't believe this is happening to me. I have cancer. And I kept-- I am a Christian, I am a woman of faith. My favorite verse is Psalm 56:10, and it says, "Be still and know that I am God." And it just grounds me. It just helps me to remember that if God can create all of this, he can take care of something as simple as me, you know. So I kept repeating that to myself, that was helping me stay calm. And then I started getting cracked up. I started getting tickled, because I thought, this is how a milk cow feels, to have this, their udders attached to something. And just lay there while they're-- you know, I thought, this is how a milk cow feels. So I kept going from, be still and know I'm God, and I feel like a milk cow. So and I would get chuckled, and I would kind of giggle, and they would say, you need to be still. And, you know, but it was my way of coping with, with what was going on. But I still say, that is how a milk cow feels, but that's, you know, beside the point.

Jack and Janet S. spoke about the physical discomfort that may accompany screening tests. Other people we spoke to emphasized the psychological discomfort they experience every time they are screened. Paul, who gets regular colonoscopies and polyp removals because of his polyposis syndrome, described first feeling “anxious about getting the procedure done” and then feeling “anxious about getting [information about] the biopsies back.” Peggy, who is positive for a BRCA1 gene mutation, said the week she waited to get the result of a biopsy was “the worst week I’ve ever had…wasn’t sleeping well, I was distracted. I just couldn’t deal with it.” Victoria didn’t remember exactly how long it took to get the results of her mammogram, but says, “in that moment, I felt like it was a long time.”

 

Lori recalls being “on pins and needles” waiting to get her results.

Lori recalls being “on pins and needles” waiting to get her results.

Age at interview: 56
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Family history of cancer
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But yes, it is always in there in the back of my head thinking, “OK well, you know, what if this next visit they find out that there's something wrong?” Because there was a time, one of the first tests I had, you get the test, and you go home, and you're on pins and needles waiting for the results. And the minute they call you're like, “oh my God, I don't want to hear this.” And the minute they called, I had to go back for a second one. And then of course, my mind went racing. And I'm thinking, “oh my God, I have cancer.” But fortunately, it was just something else, and I was fine. But there's always that worry that every time you go in there, it's going to be the time where they tell you, “guess what? You're not safe anymore.” So it's always going to be there. It's always going to be a concern. But you can't run your life worrying about it constantly.

 

Gina says the worry that accompanies a biopsy doesn’t get any better no matter how many times she has the procedure.

Gina says the worry that accompanies a biopsy doesn’t get any better no matter how many times she has the procedure.

Age at interview: 45
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Family history of cancer
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That fear never goes away. Like, you would think after the fourth biopsy you'd be like, “oh, it's going to be fine. It's a breeze.” Your appointment gets closer, and you're a nervous wreck that entire window until they call you and tell you, youknow, “it's OK. It was benign,” or whatever. But I definitely still have anxiety and fear every time. And I'm assuming most people do. I mean, that isn't something you can just be like, “oh, it's it’s fine.” I don't think it's that easy. 

The worry that accompanies a biopsy doesn’t get any better no matter how many times she has the procedure, Gina explains.

This anxiety may linger as a kind of hypervigilance. For example, Heather tried not to be a “hypochondriac,” but she is now more “aware” of her body and more likely to get “checked out” by a doctor if she experiences any pain or other bodily changes - even for things she would have previously ignored. Christian, who has Lynch syndrome, does all the screenings recommended by his doctors, but wondered, “should there be more that we’re doing?”

False Positives and False Negatives

Screening tests are not always accurate. Sometimes, the results of a test may suggest there is a problem when there isn’t - this is what doctors call a false positive. Other times, a test may come back clear, but is later revealed to be incorrect - this is a false negative. Briana, who has tested positive for a BRCA1 mutation, debated the increased risk of false positives with frequent screening for ovarian cancer, and decided the screening was worth it to her because it provided “peace of mind.”

 

Joan explains how false positives may lead both to unnecessary procedures and increased anxiety.

Joan explains how false positives may lead both to unnecessary procedures and increased anxiety.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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Well, one of my physicians said to me that, it’s unfortunate for, because those of us that are at high risk, because we had so much surveillance they find dings, and bumps, and dots that everybody has. But because we're at high risk, we have a lot of unnecessary exploratory surgery. And that makes it difficult. And then, as my husband says, when you have a hammer in your hand, everything looks like a nail. So every time something is a little awry, that's the go to, oh, it must be cancer.  So, but now, for me, because it's been so many years, and I've had a lot of the cancers, many, many years under my belt,  where I've been cancer free in those cancers-- when I have that follow-up testing for them,  I might think about it maybe a day or two before the test, and I'm a little anxious until I get the results.  But that was not true in the beginning. You know, you have to really have a lot of time under your belt before you feel that way.

 

Ronnie had a series of screening tests that came back negative before finally being diagnosed with breast cancer.

Ronnie had a series of screening tests that came back negative before finally being diagnosed with breast cancer.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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And so, then I talked to my mom about it. And she said you have to see the doctor. And then I saw my primary care provider. And she did like a clinical breast exam. She said she felt a lump. And when I heard that word, yeah, that was kind of a nightmare. But she was very kind of cheerful about it. She's just like, one step at a time. But I think the moment you tell a patient that, you know, I feel a lump at whatever.
Mm-hmm.
So then I had to get a mammogram. And I think it was about four or five days-- I think that weekend like it was a Thursday when I saw her, I think. And then the following week like on a Tuesday or something where I had a mammogram and an ultrasound. And this was at [LOCATION].
Mm-hmm.
And nothing showed up. So they didn't see anything. And that was like the biggest relief of my life. When the doctor walked in and I was waiting to hear the results, and that was like the scariest moment. And then she said we can't see anything. And so I was just so relieved. And then I went to a breast surgeon at [LOCATION] who also kind of felt around and then did her own ultrasound. She couldn't detect where the bleeding was coming from. She couldn't really see anything on the ultrasound. But she recommended-- I think she was being cautious because these things can be serious.
Mm-hmm.
They can be indicative of something more serious. But 80 to 90% of cases of the symptom are benign. But I think people are, you know, they don't want to take that chance. And so, she was being kind of aggressive about-- not aggressive-- I mean rightfully so.
Yeah.
She wanted to recommend surgery. But there was something about the surgery, what she was recommending just didn't feel right to me. She said because they couldn't detect where it was coming from it would be some kind of exploratory surgery and they would be kind of looking around. And the recovery seemed, I don't know. It just didn't feel right to me. It wasn't the surgery. It was just the way that they were doing the surgery.
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So, I got a second opinion at [LOCATION]. And then I think [LOCATION] told me I had to-- in order to get a second opinion I had to redo the mammogram and ultrasound. So, I did that again. Mammogram didn't show anything. But the radiologist, there was a slight something in the ultrasound. And he thought it was very suspicious-- not very, but it was like a little suspicious. So really for the next, I don't know, I won't bore you with all those detail. But for the next, I don't know-- it took another several months of testing. So that-- I mean I want to say that was-- that when I went for the nipple bleeding that was I think the fall of 2016 or something. And it was really-- then when I went to [LOCATION], it was like early 2017.
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But it was just like a lot of testing. About nine months. I mean, there was a nine-month period where I didn't really-- where I thought I was benign then not. It was back and forth between these different providers, doing these different tests, being really nervous and anxious, but then being really elated when things came back benign. But then the radiologist's words were always in the back of my mind because he just wasn't satisfied with the results. So even when the bleeding stopped and everything seemed OK, they-- I was told to keep monitoring it. And it's good I did because then the bleeding came back. And I was told come right away back, let your doctors know right away when the bleeding, if it comes back. And so, when it came back, as soon as I was recovered from endometriosis surgery, then I yeah, had it examined. And then, yeah, I found out the night before Thanksgiving.

Coping with Frequent Screening

Despite the physical and psychological discomfort that comes with medical tests, and the emotional wear and tear of both false positives and false negatives, most of the people we spoke with seemed to have reached an acceptance of the need to be screened regularly. Anxiety about what screening may reveal, however remains a powerful part of many peoples’ experience.

 

Christian finds frequent screening comforting.

Christian finds frequent screening comforting.

Age at interview: 25
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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So it’s, for me, I would rather be checked every year than not at all for some people, you know, in some cases. But I really don't have an issue with it. I'm glad that it's something that can be surveyed and monitored. I appreciate that. So for me, it's comforting, knowing that I can be checked out by someone who knows what they're doing, and knows what to look for.
So would you say it gives you a little sense of comfort that this is happening?
Yes. Definitely peace of mind.

 

Paul is always anxious before screening tests, and has a special label for the feeling.

Paul is always anxious before screening tests, and has a special label for the feeling.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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And somebody said that they had "scanziety." Which is, well, I think they had spelled it "scan anxiety," but I thought that was inelegant, so I shortened it to "scanziety." And the first time you have what for most people is a routine test, and they come back and say, “oh, you have to have this major organ removed, and it's going to impact your life, you know, for the rest of your life.” Every time you have any sort of routine test, your first thought is, “what are they going to take out or, you know, how is this going to affect me?”
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Yeah. Every time I have a routine test, I'm convinced I'm dying, or there's going to be some really bad news, and there's going to be another surgery.

People we interviewed spoke of coping strategies they use in the moment, and those that extend over a longer term. Janet S. deals with the discomfort of a breast MRI by repeating a psalm. Others mentioned the relaxing effects of drugs administered during colonoscopies.

Having a condition that requires frequent screening can become a catalyst to taking control. Some people keep elaborate schedules of their recommended screenings and often advocate for themselves with medical professionals in order to get the tests they believe they need. Becky, who has a strong family history of cancer and undergoes several different types of screening each year, noted how much work it can be keeping up with it all - “I can only imagine how that feels to people who aren’t organized and aren’t planners.”

 

Paul goes for screening as recommended by his doctors.

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Paul goes for screening as recommended by his doctors.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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So, yeah, recently, it's been yearly.
Right.
And it will continue to be yearly. Again, I follow the advice of the doctors, because this is what they-- it's not just that they’re gastro doctors, but they specialize in genetic bowel cancer. So whatever schedule they feel like we should be doing is what we'll do.

Some people reach the stark conclusion that such testing is necessary to keep themselves alive. Jack noted that he doesn’t like having to get regular colonoscopies, but “when you see the possibilities of ending your life unnecessarily early because you didn’t have a colonoscopy, it’s a powerful incentive to get that done.”  He said he keeps things in perspective by noting that it is “just one day out of my life - or like two days.” Similarly, Lainey is convinced that a mammogram saved her life because her cancer was identified before she could feel it during her regular self-exams.

For other people, like Irina, who has tested positive for a BRCA2 gene mutation but has not been diagnosed with cancer, frequent screening is valuable in part because it allows them to have the knowledge they need to feel “confident” that they are doing all they can to stay healthy. As Terry put it, “knowing...is much better than not knowing.”

 

Mea points to an external motivation to keep up with screening.

Mea points to an external motivation to keep up with screening.

Age at interview: 39
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: A polyposis syndrome
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I do it for my kids. I do it for them. You know, with them being tested, I want to be there for them even if they have it, so they don't have to go through so many things that I went through, because had I known younger, I wouldn't have had such big surgeries that I had. But I have to be able to guide them through life, you know, and it teaches them to be strong. You know so, but I do it for my kids. I mean, I love my family too, but my kids are my everything. So I do it for them.

 

Despite her certainty one day the news will be bad, Heather finds screening to be empowering.

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Despite her certainty one day the news will be bad, Heather finds screening to be empowering.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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And you know, luckily have continued doing all of my annual screenings ever since, and have remained clean and clear. And it has become something that I-- there is a sentiment of knowledge is power, staying out in front of it, knowing that I just have to do all these screens every year so that the hopes are we find something. And that's really, I guess, the way I view it, is I want to find it before it's a major problem. But I wholly anticipate and expect finding it. Which is interesting, right? Because it is not a guarantee that I am going to get cancer. It's not a guarantee I'm going to develop one of these, but I kind of take it to be that way. It's going to happen. The goal here is to find it faster than otherwise, giving me better chances to treat it, to fight it. You know.

Insurance and Screening

Insurance policies do not always pay for the full costs of all kinds of screening. Policies may cover screening for some genetic syndromes, but not others – or even for some specific mutations, but not others. Policies that fully cover preventive screening (such as colonoscopies) may not pay the entire cost for procedures designed to reduce cancer risk directly (such as removing polyps). For more about how insurance coverage can affect access to screening and other health care services, see our summary on insurance coverage.  Our resources tab includes financial assistance resources.