Entry 3: Resources for Women Under 40 Seeking Breast Exams

I taped this week's vlog entry more than month ago. I filmed the tag promising to post links for young women seeking easier access to mammograms.

I feel like I have failed.

I have reached out to many organizations (Susan G. Komen, StupidCancer, and The American Cancer Society to name a few.) Mostly these organizations weren’t able to help me, because free or low-cost mammograms for women under 40 are simply not available.

But, I have found some resources to check out, and ways to help women like me buck the system a little.

First of all, let’s note that there are two reasons to get mammograms:

1) A Routine Screening

The American Cancer Society recommends all women over 40 get routine mammograms. There is no indication that routine screenings for women under 40 are particularly effective in finding breast cancer. One reason is that cancer may look the same as healthy breast tissue in young women with dense breasts on mammograms. Many doctors feel that ultrasounds are a more effective diagnostic test for young women.

If you have a strong history of breast cancer in your family and/or have been diagnosed as BRCA1/BRCA2, annual or even bi-annual mammograms or ultrasounds, could be beneficial to you.

2) A Diagnostic Test

When I began looking for a mammogram, it wasn’t because I of my family history, it was because I had an actual lump in my breast. I was seeking the test to determine what the lump was. In young women, health care providers don’t immediately jump to breast cancer: cysts or fibroadenomas (both benign) are much more common. BUT, while most breast masses are benign, the word most indicates, not all. As I know all too well.

So, now we know the difference, how do we get access?

Routine Screenings

The legitimacy of routine mammograms for women of any age have recently come into question. A vast 25 year study showed the death rate among women receiving annual mammograms versus those receiving annual Clinical Breast Exams (CBE) were identical, as the New York Times recently wrote.

As a woman over 18 or 21, you should be having an annual exam with a gynecologist. Make sure that exam always includes a CBE. They take five minutes, so make sure your healthcare provider provides one. If you are uninsured, note that Planned Parenthood will provide this service.

Anecdotally, I should share that my gynecologist performed a CBE four months before I discovered a lump the size of a golf ball in my left breast. I don’t believe my doctor missed anything, I believe at that time it was too small to feel. Breast cancer in young women can grow fast.

Regarding The Affordable Health Care Act (which always comes up when we talk about free health care services): yes—it does cover mammograms. However, the regulations vary from state to state and no state offers regular screenings to women under 40 (some states provide baselines to women between 35 and 40). See more here.

Fear not! If you have a family history and want annual mammograms, there are ways to attain them...It’s just not super easy. A great resource I found (and is cross-referenced with the National Cancer Institute above) was the Center for Disease Control (CDC).

Through the CDC there is a National Breast and Cervical Cancer Early Detection Program (NBCCEDP—longest, most forgettable acronym ever). After visiting their home page, you can click on “Find a Screening Provider” then click on your state. It will offer you a link to a state-funded cancer detection program.

The New York State Program only offers free-screenings to women over forty, but notes that women under that age who have been designated “high-risk” by a NYS Medical Provider can also receive scans.

I looked at a few other states: Wisconsin offers only women between 45 & 64. Illinois didn’t list age requirements on their home page or in their FAQ’s.

I really loved the CDC page because it also provided links to cancer statistics in your state and on the New York State page addressed a lot of questions about “what next?” Like, if it turns out I do have cancer, how will I afford my care?

Another resource I found was through the American Cancer Society (ACS). I love the American Cancer Society. They have a million awesome programs for patients, they give money to research, offer financial assistance and their phone operators are really knowledgeable and friendly.

Through their website (which is fast, and can be a little tricky to navigate…don’t be afraid to call them directly if you’re struggling to find your way), they have a similar map program to that which the CDC provides. Right here.

When I put in my zip code in NYC, I found no resources. However, when I put in the zip code where I grew up in Wisconsin, I found three centers in my area that provided free or low-cost mammograms.

None of these pages indicate that they offer ultrasounds: only mammograms.

However, if you already have a palpable lump, it is likely a mammogram would confirm cancer.

Which brings us to:

Diagnostic Screenings

I did not use state provided services to attain my diagnostic mammogram. I suspect the resources listed by the CDC specifically would be difficult to navigate and/or receive immediate attention through. This is ENTIRELY conjecture, maybe I’m wrong. I just know how other government institutions work (we’ve all been to the DMV), so it’s just a hunch.

If you feel a lump in your breast and want a diagnosis my personal, non-doctor, all-Jacey recommendation is this:

Find the top five hospitals in your area for breast oncology. I tell you to choose the best for the breast scan because if you establish a relationship with a hospital and it turns out you have cancer it is likely you will stay there for treatment, especially if they are able to help you financially. So, begin with the best.

Call all of them, and ask what kind of services they offer in terms of free or low-cost breast imaging. They will probably tell you they have some day each month where they give routine exams to women over 40. Tell them your story. Ask for their help. Be honest. Be direct. Be calm… even if you’re scared. Someone is going to help you, and figure out a way to give you a scan.

Do not give up. Do not second-guess yourself. Being your own advocate is the first lesson you learn on this journey. Maybe you have a cyst. Maybe you have an overactive imagination. Maybe you have cancer. Let a doctor decide.

If you continue to hit roadblocks, think outside the box. As an actor, I received great help from The Actor’s Fund. Do you belong to a union or other organization that might be able to provide health resources? Do you have friends who are doctors who might be able to advise you?

If that fails you, reach out to some of the organizations I have mentioned: The American Cancer Society, The Susan G. Komen Foundation, Livestrong,CancerCares, StupidCancer, or the Young Survivor’s Coalition.

I wish I could tell you that all or any of these organizations has a quick link to breast cancer screenings for women under 40, but alas, they do not. However, I have spoken and/or e-mailed with people from all of these organizations since my diagnosis, and they have been helpful. If somehow you have run across my vlog and are in the same situation I was in… If you are running out of options, shoot me an e-mail. Seriously. ThatTimeIHadCancer@gmail.com. Sometimes just having someone help you navigate is what you need. That’s why I was so lucky to find The Navigator at the end of my search for a mammogram.

More on her next week. Stay Tuned!

Entry 3: BONUS BLOG: Roadblocks & Planned Parenthood

This entry introduces a lot recurring themes in the days leading up to and following my diagnosis: roadblocks, advocates, the dichotomies of the internet, and Boyfriend nagging me to do what is best for me…even if I don’t want to.

Roadblock: Planned Parenthood

A big roadblock for me at more than one juncture was Planned Parenthood. I know many women love Planned Parenthood and use their services regularly. I think that Planed Parenthood deserves all the funding it gets and more. However, I think we need to be honest about what Planned Parenthood currently provides. Planned Parenthood is about contraception. Nothing wrong with that. In fact, I think contraception is SUPER important.

I think becoming a parent (or not) is the most important decision most people make in their lives. My dad felt being a parent was the most significant job a person could have. He said that whether a person was a CEO or a janitor, if they died on Monday someone new would be in their job by Friday. But, for their children the world would never be the same. Whether you love your parents or hate them, very few people are ambivalent about the people who raised them. No one ever says, “Oh yeah! My mother. I remember her…Wow. I haven’t thought about her in years.”

Parenthood is something that should be planned. That is what Planned Parenthood is for.

But, in my opinion, it's not for cancer screenings. 

I have heard about the importance of Planned Parenthood as more than a place women go to have abortions; a place where women can have all of their gynecological needs taken care of. True, you can get your basic annual exam done at a Planned Parenthood and may even be able to get it free. These tests include PAP Smears (which test for cervical cancer), and I believe some Planned Parenthood Locations even perform follow-up tests and treatments for cervical cancer (such as colposcopies and LEEPs).

However, as Snopes and Factcheck note, Planned Parenthood does not provide mammograms. They do perform clinical breast exams (where a nurse or doctor feels you up to see if your breast has any abnormalities). Their clinical breast exams are typically performed by nurses or nurse practitioners, not MD’s.

Neither of these facts are atypical or problematic in and of themselves. My gynecologist (Dr. Coldtwat), did not perform mammograms at her office. The Navigator who gave me a clinical breast exam (after I found my lump), was not an MD.

However, Dr. Coldtwat’s office was able to offer a facility (covered by my old insurer) that would provide a mammogram for me. Planned Parenthood (over the phone), would not or could not direct me to a facility that would provide me with a free or low-cost mammogram without first receiving a clinical exam, which there was a chance (without insurance), I would be paying $100 for. What I don’t mention in my vlog is that that they informed me the next time I would be able to get in for a mammogram (in Brooklyn or Manhattan) was more than two weeks later. This was not the first time Planned Parenthood had thrown such a roadblock in my way.

My First Time with Planned Parenthood

Fall 2012, I was having pains in my side that I worried (thanks to Google and WebMD) might be related to my ovaries. So, as I was uninsured ,I called Planned Parenthood about ovarian cancer screenings. At the time, I didn’t even know what screenings were necessary and neither did the woman on the phone. However, she was pretty sure Planned Parenthood didn’t provide any ovarian cancer screenings.

I did some research and found a pelvic exam, abdominal ultrasound, and blood test could all be used to rule out cancer. I called back and asked if I could come in for these tests. The receptionist informed me their pelvic exams were to be used only as screenings, not as diagnostics. They would not perform an abdominal ultrasound, unless I believed I was pregnant, and didn’t offer the blood test.

I ultimately found a doctor through The Actor’s Fund, who was able to perform the examination I requested. (He did so for free, by the way, because The Actor’s Fund is awesome).

The diagnostic tests for ovarian cancer are not the most efficient tests we have (the blood test would not detect an early stage cancer and ultrasounds wouldn’t necessarily see a very small growth.), but they exist. And moreover, I know women who have had symptoms, gone to a gynecologist, been screened, caught their cancer early and have lived to tell the tale. So, why doesn’t a women’s health care facility such as Planned Parenthood provide these kinds of tests?

My Last Time with Planned Parenthood

Not long after my diagnosis, I was sent to Planned Parenthood to have some tests done that I were required before undergoing egg preservation (which many young women undergoing chemo or radiation do, because of the risks these treatments pose to one’s fertility). Going to Planned Parenthood was my cheapest option, and thus recommended by The Navigator.

I was initially told it would be more than two weeks before they would see me, but I played the cancer card and they were able to squeeze me in five days later. When I went in, I was questioned about my birth control options. I informed them I use condoms.

I have learned that when you inform medical professionals that the only way you’re preventing pregnancy is condoms, they get panicky, and want to push other methods of contraception on you. I found this to be especially true at Planned Parenthood.

I explained to the nurse that due to a genetic clotting disorder and my recent cancer diagnosis, any hormonal birth control options were out for me. A few minutes later, a doctor came in. She informed me she wanted to give me a copper IUD.

She was concerned that without using a more reliable contraceptive method I was leaving myself open to pregnancy during chemo or surgery, neither of which would be positive.

I expressed various concerns to her about the IUD, including the fact that I was undergoing fertility treatments the following week and I didn’t want to have any device implanted that might compromise my fertility.

Here is where I learned an important lesson, friends. This lesson has come up time and time again during my treatment...Doctors hear the same questions all day long. So, if you ask a question similar to the question they are used to answering, they are likely to bypass your actual question and answer the question they know how to answer.

So, I say,

“I am having fertility treatments done next week. Will this device compromise my fertility?”

My doctor hears,

“Blah, blah, blah, blah, blah blah, blah. Will this device compromise my fertility?”

She responds,

“No. IUD’s will not in any way compromise your fertility.”

She means that in the long-term, an IUD will not compromise one’s fertility. But, obviously the purpose of an IUD is to prevent pregnancy, and that is antithetical to the fertility treatments I was about to undergo. She didn’t hear my question. I didn’t understand the limitations of her answer. Honestly, it was a stressful day for me: 1) I had just been diagnosed with cancer. 2) I was squeezing this appointment in early in the morning before going to a wedding. So, I was on a time crunch.

She was a doctor so even though I felt rushed and stressed and wanted more time to think about it (all of which I expressed), she convinced me that this was the best time to do it. So, I did, only after confirming that if I changed my mind in a few days that I could have the device removed. She said that wouldn’t be a problem, but hoped I wouldn’t make that choice.

I woke up the next morning realizing I had made a huge mistake, and that the device had to be removed immediately, because obviously I couldn’t move forward with my treatments with the device implanted.

The Worst and The Best

The IUD had been implanted on a Saturday. Sunday I couldn’t get a hold of anyone at Planned Parenthood, and the ER I contacted said they wouldn’t remove it unless it was causing severe abdominal pain. They said it would be better for me to wait to visit my gynecologist or return to the facility that implanted the device. The Navigator gave me the same advice.

I called Planned Parenthood several times on Monday, and they told me they couldn’t see me for another week. I explained I had been pressured into getting the device, but was assured I could have it removed if I changed my mind. They didn’t care.

I explained I had cancer and needed to undergo fertility treatments days later, and keeping the device in could delay these treatments, which would result in either delaying my chemo or foregoing egg-preservation. This could mean never being able to have children. I told them I would be holding them responsible if this occurred. The receptionist passed me on to a manager.

The manager repeated that they wouldn’t see me for another a week. Did I mention I was stressed due to all the tests, and the cancer, and the bullshit? I was. So, outside of my hospital in Harlem, I screamed at this woman until I was sobbing. I said,

“Look. I have cancer. I was bullied by a well-intentioned doctor into getting a device I don’t need that if not removed could affect the entire course of my life. If chemo decides to shut down my reproductive system, I will never have children unless I am able to preserve my eggs. I can only do this if you remove this device. I've come to your organization for help over and over and all I find is red tape. When I found the lump in my breast, you were my first call, and no one was able to help me. You claim to help women in need. I am in need. You are now the only person who can help me. Why won’t you just help me?”

Like a recording on a tape machine, the woman responded:

“I’m sorry this has been your experience. If you can get to the Planned Parenthood in Brooklyn within 30 minutes, it’s possible they’ll be able to help you. I’ll send them your information. Is there anything else I can help you with?”

I got in a cab with Boyfriend and flew down to Planned Parenthood. I explained the situation to the receptionist when I got there, including that I had to be out of the office within 90 minutes. I was working that afternoon—the first afternoon since I had informed my employers about my diagnosis. I had to be on time or run the risk of seeming incapable of doing my job due to my cancer.

I was sent back to a little waiting room where no boys are allowed (an element of Planned Parenthood I understand, but can feel isolating), and Boyfriend went to class. I waited for 10, 30, 60, 90 minutes. Now I was sitting in the isolation chamber crying. Finally, I caught a Nurse Practitioner (NP) and begged,

“I have been waiting for more than an hour, I need to be seen. I have to get to work and I have to do this first.”

She looked at her chart and said I was next with her. Five minutes later she brought me in.

“I see you’re here for an IUD removal.”

“Yes.”

“Why are you having the device removed?”

“Because I never wanted it in the first place. I came in for some tests prior to undergoing egg-preservation because I am about to start chemotherapy. The doctor was worried about me getting pregnant while I was undergoing treatment. But, I never wanted the device. I don’t know what I was thinking or why I consented. It’s my fault. I just want this to be done with.”

She stopped and looked at me a long time, which seemed apropos given the extent of my breakdown.

“I’m so sorry. That’s terrible. You can put on this gown and come back out. I’ll remove the device. It won’t hurt. It will take fewer than five minutes.”

I came back out. At first the NP was silent as she lifted my gown. Then, reluctantly, she spoke,

“What kind of cancer do you have?”

“Breast Cancer. Stage II.”

“Me too. Not now. Five years ago. I was a little older than you. I was almost thirty. But, the same, Stage II. Triple negative, so it was fast moving and required a fairly intense chemo regimen.” 

I asked her a lot of questions, about her exact diagnosis, about the chemotherapy she chose, about her fertility…

“I went through egg preservation, which was lucky. My fertility did not return. But, again, I was a bit older than you and I have relatives who have fertility problems, so maybe that was always in the cards for me.”

She wrote down her cell-phone number and e-mail address.

“I know how difficult this can be, especially because there are so few women under 30 who have to face this diagnosis. Please call me. If you need anything, have any questions… Just know you’re not alone. There are people who want to help you.”

My Verdict

While I still have a lot of questions about Planned Parenthood, and the services they provide, I've come to some conclusions.

Cons:

*Planned Parenthood support staff (receptionists, etc.) are generally under-informed, and not particularly helpful.

*Planned Parenthood does not offer many basic diagnostic tests for breast and gynecological cancers.

*Planned Parenthood offers services to men at some locations, but create an environment so hostile to men that I personally can’t imagine a man going to a Planned Parenthood for help. Planning Parenthood is a two-way street, and men deserve access to STI testing, contraception and cancer screening, just like women.

*Planned Parenthood’s primary focus is contraception, an image that they fight in the media due to conservative backlash; which ultimately leads women like me to rely on them for services they do not provide.

Pros:

*Planned Parenthood provides awesome contraception for millions of women. My IUD was implanted and removed for free. You can get the pill, the morning after pills, abortion services for little or no cost, at a location where you will not be judged for the decisions you’ve made.

*Planned Parenthood provides free or low-cost testing for AIDs and STI’s. So important.

*Planned Parenthood’s website is really helpful and informative. If you have basic questions about contraception, STI’s, or cancer; their site is really easy to navigate and understand.*I believe the doctors and nurses at Planned Parenthood really do care about the women they treat. Regardless of my negative experiences, I believe the positive experiences I’ve had outweigh them.

Note:

*All Planned Parenthood locations are different. The services they offer differ from state to state and city to city. I have visited two locations inManhattan and Brooklyn. There are four NYC locations (Manhattan, Brooklyn, Staten Island and The Bronx). There are more than 4 million women who live in New York City.

It’s a big job.

So, now having shared my experiences, I ask you: Is Planned Parenthood doing their job? Are they keeping the promises they’ve made to the public? Should companies like Susan G. Komen be chastised for pulling fundingif it seems most resources are not going toward cancer (especially breast cancer) screenings? Is it wrong for an institution to simply be for Planning Parenthood? Do we need more public health options to address issues such as cancer screenings?

I don’t know. Maybe you do. Leave some comments and give me your thoughts.

Entry 2: BONUS BLOG: Perspective & Keeping It Real

This week, after viewing my vlog, a few friends asked how long I had been dating Boyfriend. I told them I had been with Boyfriend for almost two years.  They responded,

“You’ve been dating that guy in the video for two years?”

“No.  That guy is an actor.  His name is Matt. We are not dating. I am dating Boyfriend.  The vlog is just pretend.”

“I thought the vlog was real.”

I realized then that I am doing something new, and it requires a little explanation.  I am calling the genre of my vlog “Reality Sitcom” as per the suggestion of my friend Joe Martin. The vlog is based on reality.  Everything you see really did happen and it really did happen to me.  I write the vlog and I star in it.  However, these events transpired a few months ago.  Since then I’ve written them down, and now I’m filming these scripted snippets of my life with actors. 

I think documentaries are awesome (Hot Coffee recently rocked my world.  Seriously.  Tort reform is fascinating.  Who knew?)  But, I think this genre I’m working in has some advantages.  One advantage is that I am able to tell my story with the distance and perspective of a little time.

Six months ago, when it happened, my search for a mammogram didn’t feel weighty, because I didn’t know I had cancer.  Other things (my diagnosis, beginning treatment, etc.) felt really overwhelming because I didn’t know what I know now, which is that five months later I am well enough to write and produce this vlog. 

Perspective is everything.  We tend to see life from the perspective of “I” and “now.”  But, sometimes it’s necessary to step outside of that.  I think this limited view of the world is why receptionists/people are sometimes assholes.

SPOILER: I have cancer.

I know. You’re shocked.  And still I call places (as I did in the vlog): doctors, social workers, cancer support networks, cancer awareness associations, etc.; and often get people on the phone who are dismissive, rude and/or mean.  Just this week, a social worker made me cry over the phone, telling me she felt I was too over committed to attend a cancer support group and that calling their organization was a mistake. 

I thought, “What the fuck, lady?  I have cancer.  You are an organization that offers support to cancer patients.  You are being an asshole.  Did I mention I have CANCER?” 

But, from this lady’s perspective, all she does all day is listen to people who have cancer ask for help.  So, I’m not special.  I’m just another person with cancer.  That’s her whole world.  Her whole day is people with cancer calling asking for things.  Just like the receptionist in the video.  All day, sick/pregnant/scared/itchy/horny ladies call this gyno’s office and Receptionist is supposed to act like their needs are interesting to her and then set up an appointment or take a message. 

Now, Receptionist should do her job better; but at the same time I would think it’s easy to become desensitized to this kind of thing. I would guess when illness is your whole business playing “the cancer card,” doesn’t get a person very far.

I am guilty of this too—even as a cancer patient.

Last fall, Boyfriend and I were sitting in my oncologist’s office, and this very important looking woman walked in with a large portfolio under her arm.  She was tall and thin, with pale skin and dark hair.  She was wearing a very stylish suede mini skirt and gorgeous chocolate brown leather boots.  She march past several other people up to the receptionist’s desk and practically shouted,

“I have an appointment with Dr. Closefriend.  He’s a friend and told me if I brought my scans in this morning he would see me.”

“Okay.  Do you have an appointment?”

“No.  I just told you. I’m a friend.”

“Alright.  So, he’s expecting you?”

“Yes.  He said he would squeeze me in.”

“I’ll call him right away.”

“I have another appointment I have to get to this afternoon.”

“No problem.”

“Look.  I don’t think you understand.  This is very serious.  I could have cancer!  Don’t you understand?  I could have CANCER.”

I wanted to punch this lady in the face and say,

“Look bitch.  You’re standing in the middle of an oncologist’s office and you maybe might have cancer.  I DO have cancer.  Basically everyone in this waiting room has cancer, and we don’t have $300 boots to tromp around in while we complain about it.”

Needless to say, Boyfriend prevented me from executing this monologue. 

Maybe that woman looks back on that day as the scariest day of her life, or the day her life changed forever, or the day she decided she needed new boots.  I can’t say what that day was in her story.  I can only tell my story.

That’s what I’m saying.  The vlog is true from my perspective, where I sit now able to see the things I did right and wrong, able to see what was tragic and what (with time) would be funny.  It's all truth. It's just my truth.