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Selling the Fantasy of Cancer Survival

Updated at the Bottom

I was so inspired by the New York Times’s article today about the “fertility industry” that I thought I’d apply that keen eye to other aspects of the medical world.  So yes, cancer industry, I’m looking at you.  I mean, aren’t ALL medical practices making money off our medical issues, churning us through protocols without any regard to how much the patient can take emotionally?  If reproductive endocrinologists are selling us the fantasy of fertility, aren’t oncologists just selling us the fantasy of cancer survival?

No?

I am being sarcastic, but it is frustrating that no other area of health care is labeled an industry and condemned.  We don’t blame the medications or doctors when people die from cancer; we blame the cancer.  In that situation, we understand that our bodies are not under our control as much as we’d like to believe, though we do hold out hope that what has worked for others will work for us.  But yet when infertility treatments don’t go according to plan — and anyone who believes they’re a sure shot hasn’t done due diligence as a patient to explore success rates (and yes, exploring success rates applies to every area of the medical world as well along with second opinions) — we blame the “industry.”

We’ve been promised something that it hasn’t been able to deliver.

Except no one promised it.  Or, if they did, they didn’t promise it any moreso than oncologists make similar claims when trying to assuage the feelings of very anxious patients.  Have hope.  Focus on the success rates not the failure rates.  It’s worth a try.

Miriam Zoll writes,

Medical science has achieved great feats, improved and saved the lives of many. But when it comes to assisted reproductive technologies, science fails far more often than is generally believed.

But isn’t that true for ALL areas of medical science, at least the ones that have high emotional stakes?  When it comes to cancer technologies, science fails far more often than is generally believed if you only focus on all the people wearing “survivor” shirts as they cross the finish line on a fundraising walk.  But even knowing the failure rate, would anyone not try reproductive technologies or cancer technologies within reason, hoping they’ll become part of those success statistics?

Individual doctors who are treating individual patients need to do a better job at talking through the risks, success rates, and counseling patients out of treatments when they don’t make sense financially.  And the good ones do.  If your doctor isn’t doing those things, that is the fault of that doctor, not the fault of all doctors.

I am all for regulations.  I do believe that patients need to be better informed, and the media needs to stop holding out IVF as a panacea for all fertility problems.  I think it’s disgusting when I see the quarterly reports for a fertility clinic and see just how much money they’re making because I have a medical issue.  Though the reality is that I’d probably say the same thing if I looked at the quarterly reports for medical practices focused on treating other diseases, AND I also know that I am looking at numbers without any understanding of how much of that money goes back into running the office so those doctors can keep providing treatment.  I have no clue how much of my doctor’s annual salary goes into paying his insurance; how much of it is actual, usable take-home.

But above all of that, doctors need to do a better job educating AND supporting patients who choose to resolve their infertility by leaving treatments and pursuing another path including adoption and living child-free.  I would be all for doctors being required to help patients explore those other options before starting any treatments; just mentally help them through the decision process.  I think if there was more support for it, there would be people who would look at the success rates and say, “for me, it’s not worth the gamble.”

Because sometimes it isn’t.  Though sometimes it is.

What I’m not for is skewing the story in the opposite direction.  I don’t think that actually solves the problem with the way the general population understands infertility and the limits of treatments.  Zoll quotes what she presents as eye-opening statistics such as the fact that “In the United States, the Centers for Disease Control and Prevention puts the overall failure rate at almost 70 percent.”  And yes, that is true if we look at the number of IVFs performed yearly vs. the number of times it is successful.  But Zoll’s number doesn’t tell us anything about the individual success rates of IVF.  The percentage of people who get pregnant after two or three tries.  When you look at it that way, the success rates of IVF mimic the success rates of an unassisted pregnancy.  In other words, just as fertile people often take a few cycles to get pregnant, the same goes for treatment cycles, and a lot of that is dependent on the age and diagnosis of the patient.

To hold doctors or technologies to a standard that even the healthiest of bodies can’t achieve feels like it’s picking the wrong fight.

Oh, because there is a fight here to be had.  But this isn’t it.

I don’t blame the author.  I think she did a fine job presenting a facet of the infertility world, and she has a personal story that deserves to be heard and considered.  I do blame the New York Times for that title and the lens it put on the article.  Because they have a big agenda when it comes to infertility and we’ve seen it over and over again.

Update:

I own Pamela Jeanne an enormous apology.  I missed until right now that she worked on the op-ed too.

As I said before, Zoll has a personal story that deserves to be heard and considered, and that goes for Pamela Jeanne too.  I think both women have stories that are worthy of attention on their own, and I think it detracts from their personal stories to lay blame on the medical community or the media, both of whom didn’t create infertility.

I mean yes, we can argue that McDonald’s creates a product that creates a health crisis in people, but we can’t really argue that reproductive endocrinologist created infertility.  Nor can they provide a perfect solution to a disease they didn’t create.  If we want infertility to be defined as a disease, we need to treat it as a disease; one that has a wide range of severity within the diagnosis and one in which a single protocol or a single path doesn’t fit all.  I’m glad that both women ultimately found a solution that worked for them and wish they had been given more support along the way.

17 comments

1 mrs spock { 09.12.13 at 12:09 pm }

Yes. And I would like to add, that not all infertility is resolved with IVF. There is a large number of us who only require lower tech means. As a nurse, I would tell you that every disease has its continuum, and while some diabetics can be managed with diet and exercise alone, there are some whose diabetes is caused by autoimmune issues, or who are terribly brittle and can maintain the strictest diet and insulin protocols and still have an impossible time managing the effects of diabetes. And when it comes to infertility, there are those like me with lazy ovaries who will have the relatively easy path of oral meds (and even a random pregnancy), and those who bring out the big guns but do not achieve that elusive pregnancy.

Your outcome will depend upon your particular diagnosis, or that of your partner, just as someone with cancer may come to treatment with Stage I and others are knocked off their feet by metastatic cancer right from the beginning.

If you reach IVF, you are likely closer to the “harder to resolve” continuum of infertility, and the odds are less in your favor to build the family you envisioned.

2 Lollipop Goldstein { 09.12.13 at 12:14 pm }

Absolutely — the focus on IVF does a disservice to all the other options out there.

I think part of the problem is that we want it both ways. We want to call it a disease, but we don’t want to admit that it IS just like every other disease in that it has a wide range of stages and a wide range of treatments. And not all of them will be successful. But even knowing that, most people would choose — if the opportunity is there (which isn’t always the case; sometimes cancer, for instance, is merely managed to lead to a humane death) — to treat it. Even knowing that we may not have success.

3 Sadie { 09.12.13 at 12:52 pm }

This is such an interesting post for me, as I am both a cancer survivor and an infertility/recurrent loss ‘patient’, and the experience of the latter has made me frequently re-evaluate the former. You make a really great point in highlighting how the statistics are not looking at each couple but at individual treatments – i.e. if a couple conceives after 2 or 3 tries that is still a ‘success’. True. But I also agree with you that doctors need to do a better job of supporting people who resolve to move forward from infertility without that particular version of ‘success’. I also think that this blogging community has a responsibility that is largely going unmet; I get frustrated when I still read so many posts out there that refer to quitting treatment, or walking away from ttc altogether as a kind of ‘weakness’, or when I realise how the stories of childless-not-by-choice couples are ‘scary’ to those still trying. Here’s where this whole loss/IF experience has made me rethink my experiences of cancer: I was a miracle recovery from my cancer after being given a terminal diagnosis, and as a result, my story is so often vaunted as the shiny happy fantasy of cancer survival you mention. They like to march us out to illustrate ‘success’, and at one such fundraising event they gave us buttons that said ‘I beat cancer’, which was supposed to make us feel proud. But now? In light of another diagnosis, one that is less about life and death but certainly about quality of life, I find that slogan distasteful. Because does it mean that those of us who walked away from treatment, or never got our ‘success’ in the form of a pregnancy or healthy baby were totally ‘unsuccessful’? Did we ‘lose’ or battles with IF? You’ve hit the nail on the head with this juxtaposition, which happens to be one I’ve lived.

This is a meandering comment, but I guess what I’m trying to get at is that yes, people can and should be able to make those treatment choices for themselves, (as with other illnesses), but that there should also be more discussion, in a supportive, positive way, about the realities and possibilities that come when we don’t get what we were hoping for.

4 Lollipop Goldstein { 09.12.13 at 12:58 pm }

You bring in a really interesting perspective since you’ve lived both.

There needs to be more support EVERYWHERE — emotionally and financially — for other paths out of infertility. I don’t think people experiencing infertility are encouraged enough to seek help and support in making decisions. Doctors who know our individual story and diagnosis are in the best position (or to have someone within their practice) to help counsel us on a treatment plan that takes into account our emotional reserves and financial realities. Instead of just trotting patients past that wall of baby pictures that every office seems to have to visually prove the “success” rate.

5 Jo { 09.12.13 at 3:42 pm }

I love your response. I read the NYT article and came away with a bad taste in my mouth. Though they make valid points (IVF doesn’t fix everything, there are no guarantees, and those who don’t achieve pregnancy are often shunned/ignored by both the media and the blogging communities), the overall tone didnt jibe with my own experience. As a patient at no less than five separate fertility clinics, I do believe I’ve seen a variety of doctors and treatment styles. And only once did I believe that money was the clinics chief concern, or that my issues were being “glossed over” in favor of pushing IVF. As you point out, I firmly believe that was a crappy doctor, and not at all indicative of the “industry” as a whole. I think your response was more balanced, and I agree that we can’t both claim infertility as a disease, and also blame doctors who can’t successfully “cure” it every time.

6 Jo { 09.12.13 at 3:46 pm }

Also, unless you’ve had cancer or experienced it with a loved one, you don’t really know how incredibly expensive THAT treatment is. It boggles the mind, and IVF pales in comparison. The difference is that cancer treatment is frequently covered by / subsidized with insurance (though not always), and IVF rarely is. My point being that the healthcare industry as a whole is insanely expensive, and it’s not really fair to say that only infertility doctors are in it for the money. Most doctors, I believe, genuinely want to help people, whichever specialty they eventually pursue.

7 amelie { 09.12.13 at 7:58 pm }

I am supposed to be dead. Once my doctors realized the extent of my cancer they refused to do additional diagnostic work until after treatment had started. Once you are diagnosed as terminal certain treatment protocols are no longer open – by starting treatment before diagnosing the metastasis I was allowed to continue treatment with insurance coverage . As yet another “miracle” cancer survivor – 10 years- (and a baby loss mother) I can tell you that treatment is expensive, possibly futile and worth every dollar and agony – if it works. If it doesn’t work then it is not worth it at all. The only way to know is to do it. To not have tried at all would have been unthinkable. This reasoning works for cancer and babies both. I don’t regret either sets of treatments and would never tell someone else to give up until she is ready!

8 GeekChic { 09.12.13 at 10:05 pm }

I have had cancer four times (currently dealing with the fourth and likely terminal appearance) and I can say that there are certainly some in the oncology community that “sell the myth of cancer survival”. Patients with persistently recurrent or metastatic cancer are ignored by some in the community and you certainly don’t see them trotted out by the advocacy and fundraising folks. Even other patients shun them to the extent that there are specific metastatic / terminal / stage 4 support groups in a number of places. No one likes a “failure” after all.

Is this similar to how the childfree not by choice are treated in the ALI community or by fertility doctors? I don’t know and it’s not really my place to say given that I’m childfree by choice – though some of it does sound similar to what I’ve read on a few blogs here and there.

I think, to make a massive generalization, that society is currently intolerant of “failure” or the worst case scenario that someone might be living. The dying, the pained, the chronically ill and the suffering (and dealing with infertility is definitely a form of suffering) are all left behind in the positive thinking culture that Barbara Ehrenreich decries so well in “Bright Sided”.

9 Terri Davidson { 09.13.13 at 8:53 am }

Thanks, Mel, for writing this eloquent response and expressing so many of my thoughts. I feel Miriam and Pamela Jeanne have important stories to tell, but I also wish they had offered some concrete solutions for how they would like to change the situation for their fellow travelers. That is part of responsible criticism. Ironically or not, before I started marketing in the infertility field (I consider what I do education and awareness versus selling a fantasy), I did marketing for a hospice. Our biggest challenge was getting oncologists to refer patients soon enough to our program. They would refer a day or two before the patient died rather than six months to a year (even though for most patients they eventually referred there was no reasonable path to a cure in that timeframe). If they had referred earlier or at least educated patients about this option, many could have focused on quality of life versus enduring more fruitless, painful and debilitating treatment. I don’t believe these doctors were not referring because they wanted to make more money from patients, but rather because they were afraid to admit failure to both the patients and themselves. They wanted to provide hope. I also see this with many of the fertility physicians I know — they want to provide hope, they want to give their patients one last chance at parenthood even if the odds are not in their favor. But both infertility patients and infertility providers seem to be held to higher standards than their counterparts in the rest of medicine.

I also wished the writers had mentioned the failure of the insurance industry to recognize infertility as a complex disease/set of syndromes and to provide insurance reimbursement for diagnosis treatment. This failure has further commodified the field and intensified the public relations failure.

10 Mali { 09.13.13 at 2:00 pm }

Wow. I think we read two different articles. But I think we read them from completely different perspectives.

I completely disagree that this is a skewed article, or that Pamela or Miriam in any way put blame on the media or the fertility industry for their outcomes.

The New York Times op ed piece is simply an attempt to put the other side into media coverage of fertility treatments, to recognise that these treatments (IUI, clomid, IVF, donor egg/sperm, ICSI, or surrogacy) are not an automatic fix. And that it would be irresponsible at worst, misleading at best, for any medical professional to suggest that they had “everything you need” to “cure” a disease, whether it is infertility, or cancer, or heart disease. And yet that is what the Fertility Planit show is doing. And it is what many fertility clinics advertise. (I’ve never seen a cancer specialist advertise – ever. It is not done in NZ. I don’t know if it occurs elsewhere). Addressing that balance is what Miriam and Pamela’s article was about.

They weren’t blaming the doctors for not “curing” us. However, the article simply asked for a recognition – whether in the industry itself or in the media and wider society – that it doesn’t fix everything.

Ultimately I think you agree with the authors that there needs to be more support, more regulation, more understanding from the patient’s perspective. Having read you for several years now, I am sure you do. All they’re asking for in addition is that there is recognition that there will be some who will come out of this without the “success” badge of a baby. And that maybe, that shouldn’t be swept under the carpet, or whispered about behind closed doors.

As a woman who could not have a child after loss, infertility and fertility treatments, I was very pleased to see the other perspective put out there. For a change. Maybe this will help those of us who don’t walk away with a baby. Maybe it will help raise awareness that and reduce the pressure on us (to try IVF as if it is a golden bullet, or to “just adopt”), and maybe help others decide whether and when and how many treatments are right for them.

Maybe, just maybe, it will help society to realise that infertility is a real disease, and just like cancer (or heart disease, or a myriad other conditions) some get a cure, and others have to live with the consequences for the rest of their lives. And that this isn’t “our choice.”

And yes, to Geek Chic, those of us who are not “success stories” in that we don’t have a take-home baby (though in my mind we are indeed success stories) do frequently feel shunned and ignored by the rest of this community, and many of us have stories that we were dropped like hot potatoes by our fertility doctors/clinics the instant it was realised we probably wouldn’t be doing any more treatments. We certainly realise that there are very large differences in understanding of our situations and our lives. I think this post (and some of the responses) is evidence of this.

Oh, and the McD’s reference in their article? It was about how McD’s engineer their products to create a desire to keep coming back, just as many fertility clinics can keep offering “hope” to keep getting their clients to come back. I have a friend who wishes someone had spoken out about the fertility industry before she did 10 IVFs. She now worries about the drugs she put in her body, and wonders if she might have had the courage to stop treatments earlier.

It may not be the fight you want to have. But walk in our shoes, and maybe you’ll all see why we are all so supportive of Pamela and Miriam’s article.

I could write a book about this (and it seems I almost have – though honestly I’ve only touched on a few issues!) but I won’t say any more here.

11 Katie { 09.13.13 at 3:10 pm }

I wrote about this a little bit yesterday, but I support the op-ed. To me, it wasn’t so much of a stand against fertility clinics, but more of a call to raise awareness on the improvements that can be made in reproductive medicine and the stigma felt by those of us who have opted to stop treatment.

What we need to teach is responsibility across the board – responsibility of the clinics to let patients know the truth (about everything from odds to finances) and responsibility of the patient to speak up, ask questions, and be on the defense when it comes to treatment to protect their time, money, bodies, and relationships.

As I told a good friend of mine, I think of this like a train ride: Ultimately, it’s the individual’s responsibility to step off of the train when he or she doesn’t want to travel any further. I can’t expect the train operator to know inherently which stop is mine. However, it’s the train operator’s task to help navigate the tracks and ensure the safety of the traveler.

12 IrisD { 09.14.13 at 12:28 am }

I just keep thinking, perhaps the individual success rate is equal to that of couples who are ttcing, but are not infertile: A few months, and bang, you ‘re pregnant. But, couples who are not infertile do not have to cough up thousands per round each time they, ehmm, attempt to procreate. A huge part of this is the cost.

13 loribeth { 09.14.13 at 9:17 am }

Wow, seems we had much different reactions to this piece & took away very different messages from it. I guess I am coming to it from a perspective that is closer to Mali’s. I’m glad we can all seem to agree that more education & support is needed for those going through or considering infertility treatment. And those who choose to walk away — and there are many more of us out there than most people realize — should not be (further) stigmatized. That was what I felt the NYT article was trying to get across.

@GeekChic, I too thought of “Bright Sided” & “pinkwashing,” which certainly has become a bit of an industry unto itself.

14 Anon { 09.15.13 at 5:56 pm }

It’s so funny to me how opinion on this article split down those who got pregnant and those who never did. To me this post reinforces the stigma of those who never did conceive. The whole financial portion of infertility I think is the biggest thing that makes it different from cancer. If I got cancer my insurance opens a whole world of possibility and help to me. I think my treatment options would be pretty vast and complete and I would feel like I’m able to fully pursue treatment in a manner that satisfies me, even if I do die in the end. But when it’s infertility, finances lead the way. Time, I think, is most critical in infertility and when you are piecemealling treatments together, counting change in the couch cushions so to speak, an IUI here and IUI there for 7 years you don’t get very far. I had 10 IUIs in all but could never afford IVF. Imagine if cancer was like that, you can afford chemotherapy pills but chemotherapy IV, oh, too bad you can’t afford that. You can imagine the sting of your comment regarding the 70% not taking into account the women who had multiple IVFs. In the end, we know, and you should know too, we don’t really hear from the failures. I don’t mean the girls on their 2nd IVF ready to try again, you go girl. No I mean the rest of us, the ugly side of infertility where there is no baby at the end. Our blogs aren’t very popular, our niche is only ourselves. And at every chance we get shunned, much as you have done here.

15 Rachel { 09.18.13 at 4:07 am }

I’m not sure why you owe anyone an apology. You reacted to what you read, not knowing you knew the author or authors. That’s how the general public will also respond — to the words on the page, not the people behind the words.

Social media helps us feel connected to so many people, gives us their stories, and that’s great. But… it shouldn’t stop us from speaking out. It’s uncomfortable talking about an article or book or whatever in a less than positive light when we “know” the author. But we owe our readers an honest response… even if it’s a tad angry.

Re: all the different responses here, I think people see in it whatever they need or want to see most. There were *many* ideas in a rather short op-ed, and it was possible to focus one any one paragraph and come away with a different reaction.

While, yes, I’m sure those who conceived and those who didn’t will react differently, I think the huge variety of issues to respond to within the op-ed also led to a variety of reactions.

16 Sara { 09.24.13 at 10:03 pm }

Mali–print and television advertisements for cancer treatment centers are routine in the United States. Things are very different without a single payer system. So, Mel’s analogy is appropriate to the US situation, although perhaps not to medical systems everywhere.

It’s so interesting that different people read this article so differently. I definitely felt that it was a bit hostile to the “fertility industry”. That may be because I became pregnant with a take-home baby on my second IVF (after many failed less-invasive treatment cycles), but it is worthwhile noting that I did NOT become pregnant on my third or fourth cycle, and did end up throwing in the towel in my attempts for a second child after cycle #4. So, I’ve both “succeeded” and “quit”. I think that the difference here may be less between “haves” and “have nots” than between people who felt misled by their doctors and supporters and people who felt that they were treated fairly. My US doctor charges extortionate fees, which I resent, but he is also scrupulously honest, has always presented my options and chances of success in a realistic manner, and has supported my decisions, such as they were. Ditto for my Korean docs, who charged a lot less. I think that another factor that some people find treatment in general and IVF in particular “harrowing” (see the article) and others do not. I never minded cycling at all. The injections weren’t a big deal, I didn’t have much in the way of side effects, and yes, it was inconvenient, but compared to a lot of other things I’ve been through, not terribly difficult or traumatic at all. The only part that made me miserable was when the cycle didn’t work (and the MONEY, oh the money…). Probably women who find treatment harrowing will run different cost/benefit analyses in their minds. Now that I think about it, I realize that none of my doctors told me that it would be awful, and since it wasn’t awful for me, that wasn’t a problem. Perhaps if it HAD been awful, I would feel very differently about the way fertility treatment was presented to me…

17 Mash { 12.05.13 at 6:19 am }

Such a touchy subject! Whew. I come back to this, why does IVF cost $3000 (in fact less with the current exchange rate) in South Africa and $15000 in the States? Same protocols, exactly the same drugs? And let me tell you, our FS’s are driving fat sports cars too.

I don’t think it’s an unethical industry. But I don’t think it’s an overly ethical industry either. In fact probably anything that punts ridiculously expensive pharmaceutical products is to some degree tainted, because hey, those guys can charge what they want to a large degree.

What would make me a whole hell of a lot happier about fertility treatment, is if regulation would force FS’s to give out the stats at the same time that they hand over the quotations. That would make the playing field more even. There would be a lot fewer couples walking away with the idea that “all we need to do is save up the money for this IVF”.

It would also be great if the public was a little bit more educated around the fact that fertility treatment is not so super successful, so “just” doing that and “just adopting” is not so easy.

I had a wonderful and kind FS, that’s not my issue. I had a very smooth experience with every cycle I did, that’s not my issue either. The true devastation came with the failures and wondering what on earth to do next. The fertility clinic certainly always have an answer for me on that front, together with a price tag that feels a lot like a sucker punch.

I know someone who had 18 IVF’s. Bet you no-one told her upfront that’s what it might take to get her baby. I guess the difference with cancer is – you know straight off that you might die when you walk into that doctor’s office. With infertility, you don’t know when you walk into that office that you might never be able to get the vast sums of money together that it could take to fall pregnant (even in countries where the state pays, I don’t know of a country where the state will pay for 18 IVF’s). So the false hope factor in infertility clinics is just very simply bigger due to the lack of education around the treatments. That’s my issue with it.

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