A Nation Obsessed With Jade Goody's Cervical Cancer But Not Mentioning Why She's Dying From It

Follow-up is a definite issue, and I think sometimes doctors have a lot to do with it. They don't always stress how important it is, or explain the results adequately. Sometimes the problem is also a lack of compassion on the doctor's part as well. I recently have needed to have abnormal cells removed and my doctor was so judgemental and the treatment was so painful that if I was a less educated woman I would simply have refused to go through the treatment again when I needed it, instead of finding a different doctor. And she never stressed how vital it was for me to get treatment, if I hadn't already known the dangers of HPV I probably would have thought that this was something that could be blown off without much reprecussion.

Gosh Tracey, I'm really sorry to hear that, I'm a medical student now, and our training has been really big on being nonjudgemental, and really emphasizing the importance of preventative care and followup. Your story seems pretty emblematic of why we spend so much time talking to fake patients, and why medical education has changed so much in the past few years.

Another thing I'd like to emphasize is that doctors can't help you if you don't give them the whole story! Part of that is being familiar with your whole story, requesting copies of test results and paying attention to what they mean. Having worked in the ER, I can't tell you how many patients I talk to who say "well my doc told me to come in right away, something about a test result" who then don't have the test result, don't know the medical problems they have, or the medicines they're supposed to be on.
Obviously we've dropped the ball on our end, the docs need to emphasize that kind of education to our patients, but patients need to really be advocates for their own care.

I agree with both of you: Follow up is hugely a important issue on both sides. I'd be curious to see what those letters Goody got about her abnormal pap results actually said, and whether a doctor followed up with a phone call to explain the results and the importance of treatment. In this case, who knows what really happened. If she really was only contacted by letter, I'd say her doctor dropped the ball by not calling to make sure she got and understood the letter, and how important it was for her to get treatment. It's hard to imagine any doctor doing that though.

And I agree, Nik, it's hugely important for patients to keep track of their medical histories and test results, and make sure they pass it along to their doctors. Unfortunately, many patients don't realize this, and/or don't have the means to do it. I suppose that's what a lot of the push toward electronic medical records is all about.

Thanks for the mention.

You know, the sad thing is that the Jade didn't follow through was because she was afraid.

Afraid.

And I just can't help but think that if someone had just made a phone call to her, things would have turned out so differently.

I know of so many clinics and mammogram units that use the mail to communicate abnormal results. I think it's wrong. The mail is for bills, and for dunning notices and for catalogues. It is not the method to use to notify someone they could have a cancer. Pick up the phone, for heaven's sake.

It's not as though this girl was hard to find.

http://www.chinapost.com.tw/commentary/the-china-post/special-to-the-ch…

related to graduatiing classes of 2099, re science education

danny
Tufts 1971

Funny that- I had to get tested a couple of years ago- I was told what day to call for results. I did that, and the fucking receptionist (who I explained to why I was calling aand what my instructions were) told me that the doctor and nurse were busy and I could just wait. I said as calmly as I could "I hope no-one EVER tells you to wait when you have to call for your cancer results" got off the phone and bawled. I was at my job and I was going to be out of the office and unreachable that day. I also had explained that to the woman on the phone. I offered to stay on the line. I totally get how people are afraid, intimidated and just plain frustrated and confused with this type of stuff, as my experience was not unusual when talking to the friends I know that go to this doctor. The doctor and nurse BTW were not at all like the witch on the phone, which is why I stayed with them. No cancer that time, but you got me to thinking that I ought to make an appointment ASAP. Thanks....

Thanks for posting this - very important stuff.

I know of so many clinics and mammogram units that use the mail to communicate abnormal results.

Seriously?! I guess I shouldn't be surprised by that, given the state of the health care system, but I find that astonishing. And awful.

I think it's wrong. The mail is for bills, and for dunning notices and for catalogues. It is not the method to use to notify someone they could have a cancer. Pick up the phone, for heaven's sake. It's not as though this girl was hard to find.

I agree completely. Not only is it a bad and impersonal way to notify someone of something so terrifying (which can only heighten that fear problem talked about above instead of helping to calm people and encourage them to seek treatment). It's also a seriously inhumane and unreliable way to convey such important information. Things get lost in the mail. Patients' reading skills and comprehension vary. When you're scared, it's easy to not open the envelope for a long time, then eventually lose it. Etc. There are so many reasons these kinds of letters are a bad idea.

Just updated the post above ...

My doctor called me at work, while I was in the middle of a lab experiment. We didn't even have cubicles exactly, it was in the old-fashioned "bullpen" arrangement of desks. No privacy. Crying in front of your boss really sucks, let me tell you. So, hmm, I don't know if I would prefer a letter or a phone call. Ideally, in a world without co-pays, I think I'd rather have a phone call or email saying, "We need to discuss your test results, can you please come to the office as soon as possible?" and be told in person with a counselor present to hand me tissues, then had the next steps (follow-up w/ gynecologic oncologist) handled by the office staff. But I realize that isn't always feasible.

Another thing is this: I had a few abnormal Paps before the cancer showed up, BUT the doctors at the time often (correctly) said, "Well, it's not such a big deal because these things often reverse themselves. Take some vitamins, take care of yourself, come back in three months for a repeat." And I'd do that and in three months everything was fine. After hearing that for about the fifth time, you stop worrying about abnormal results because everything is always fine in three months.

Gynecologists also vary amongst themselves over how much follow-up a CIN 2/3 grade dysplasia really needs: Some want to LEEP or laser it off right away, others figure why risk damaging the cervix of a young woman who will undoubtedly want children. When you go from one doctor who wants to colposcopy and biopsy every single thing to another who takes the "watchful waiting" approach, then change doctors again (yay, American health insurance!), you stop getting overly concerned about a doctor yelling at you that you need follow-up. And not terribly long ago, there were doctors (see the Cartwright Inquiry) who felt that there was no need to treat cervical cancer at all until a woman had already had as many children as she wanted.

I also had an especially bad experience with an OB/GYN's biopsy that landed me in the ER. Lots of these things are handled badly by OB/GYNs who are more interested in the OB side of things: They got into this field to catch babies and see smiling happy mommies, not to give out bad news to sick women who may never have babies, who will require lifelong follow-up care.

I don't know, cancer follow-up is notoriously bad all around. It may be that the experience of having cancer, between wrangling multiple specialists and side effects of treatments, combined with the philosophical aspect of facing the possibility of death and getting over it, is enough to convince patients that dying of cancer is not necessarily the worst thing that could happen to you.

I'm guessing that most if not all of the above comments are from the US. In the UK, there is still an unspoken policy amongst the poorer classes to avoid doctors and hospitals. The roots of the problem are many and varied, but are usually based on ignorance of health issues.

Sometimes it is historical. I knew of an elderly gentleman who preferred to die an agonising death rather than go to the local hospital; said hospital used to be the poorhouse in which he was raised (think beaten, humiliated and stripped of any dignity)

It can be a class related thing. The working classes do not want to seek advice (even medical) from the middle classes. I know, it's stupid, but it happens, and class is actually a larger problem for the working class here in the UK than most people recognise.

But mostly it's ignorance. Don't get me wrong, I'm not saying stupidity. When we have a press which prints medical scare stories on a weekly basis to a gullible public, encouraged by daytime TV presenters who have zero knowledge, add to that a generous portion of pseudoscience, the general public is now wary of the medical establishment and so-called 'Big Pharma'.

As for the actual story of Jade Goody, it's part of the whole circus. In the UK we get a day by day, hour by hour account of a celebrity dying inch-by-inch. It's, to me, the most perverse take on schadenfreude I can imagine.

Easy money for Max (I'll represent Idi Amin) Clifford.
apologies if that sounded like a rant.

JH

I don't have any reason to doubt that Goody has cancer, but a vast majority of the women who contact the HERS Foundation discover in their pathology reports that no cancer was found. Not surprising, since according to the CDC, the incidence of cancer in the cervix, ovaries, and uterus are identical to the incidence of cancer in the penis, prostate, and testicles...and we don't see men having their male organs removed.

Furthermore, The Pap smear is often praised as a medical miracle because itâs sometimes effective in detecting cervical cancer, but it is prone to a high percentage of errors. One report puts the error rate of false-positive results (tests that say a woman has cancer but she doesnât) at 44.8%. Other studies indicate an even higher percentage rate of false-negative results (when a test tells a woman she doesnât have cancer, but she does). Because of the high error rate, women with abnormal Pap smears might find the results more meaningful if they repeat the test three times.

The natural condition of the cervix is to have some degree of inflammation. Chronic cervicitis is so common it can be called the natural state of the cervix and often results in abnormal Pap smears. Women who use hot tubs or whirlpools (breeding grounds for spreading genital viruses, even among family members), donât use a condom, or who are sexually active are much more vulnerable to developing cervical dysplasia or a genital virus...which are often mistaken for "pre-cancer."

By many doctors' definition of pre-cancerous, we're all pre-cancerous. The C word strikes fear into all of us, but more women die from hospital acquired infections and negligence during surgery to remove alleged cancer than from cervical cancer itself.

I was diagnosed as having "pre-cancerous cells" after a pap exam in March 1990. I was notified by a postcard in the mail. The postcard "suggested" that I call my doctor regarding the results of my recent exam.

I was 25 years old and a recently sober (six months) alcoholic. I had no health insurance and hadn't been to a doctor since I was in high school. I had the emotional and mental maturity of a teenager. When I got the postcard I was confused and I asked my mother for advice. She told me to ignore it. The doctor only wanted more money out of me, she said. I come from a fairly middle class background in a suburban area outside of a major East Coast city (Boston) in the U.S. It appears that my family didn't much trust doctors either. I ignored the postcard.

Over the next three months I got several more postcards and letters from the doctor's office. The doctor was a stranger to me, not my primary care physician (since I hadn't been to the doctor's since I was a teen, I didn't have one) or a family practitioner I had known for years. To my knowledge, the doctor or his office never called my home. Each time I got a letter or a postcard, I asked my mother for advice. Each time she told me to ignore it. It was the wording of the final postcard (or letter) that finally got my attention. "We will no longer be responsible for your health," it said, if I did not respond. Fuck my mother. I responded.

My doctor's bedside manner was not the warmest. After examining me again and confirming that I did have the beginnings of cervical cancer, he explained to me how I may have developed it. Unprotected sex and untreated STDs were mentioned. When I was done crying, he told me I had two options - laser surgery or knife surgery - and less than a week to make my decision. (I had waited so long since receiving the first postcard that my condition had worsened and he wanted me in for surgery in less than two weeks. He also mumbled something that sounded like "Uh oh" while he was examining me, which is never something you want to hear your doctor say, particularly when you have your legs in the air.)

Short version: I had the laser surgery, went back for a follow up three months later, had to have another surgery, and have been cancer-free since then. (I continued with regular follow ups for years afterwards).

Skloot, I find some of your comments disturbing. First you blame the media for not using this woman's story as an opportunity to educate women. I don't think that is the media's job. (Side note: I'm a former reporter who is familiar with the reality of the many constraints of writing for newspapers.) It is the medical community's job. It is the media's job to report the story, not to editorialize about this woman's experience.

Then you blame the victim, saying it was her lack of follow up that caused her to be in this condition. But then you chide her doctor for not picking up the phone and calling her and informing (i.e. educating) her about her condition and explaining how important it was for her to get treatment - but in the next breath (sentence) you say it's hard to imagine any doctor doing that (doing what? Dropping the ball or making the extra effort to make sure his patient was informed and educated about her condition and options?)

And you seem seriously surprised at the medical community's decision to report the patient's condition to them via mail, and lament the "reading skills and comprehension" of some patients, and the lack of follow up among "lower income and minority women."

Sigh. Yes, Lots of education IS needed on HPV and cervical cancer I'm afraid ...and among some science writers too. From reading this story and some of your comments, I feel like you are seriously out of touch with the reality of the medical community from the other side of the desk - the patient's.

I was neither a "lower income" nor a "minority" woman when I received my postcard suggesting I should contact my doctor's office about the results of my recent exam. I was a youthful, immature woman who received bad advice from her mother - someone she expected to steer her in the right direction, not the wrong one. My mother was obviously not the person to be asking advice from but she was the one I trusted, not the rude receptionists at the doctor's office. I'm truly surprised that you are surprised by the behavior of the medical community, but then again, I suppose I should never be surprised when people from a more privileged background make broad sweeping judgments about people from what they deem as "the other side of the tracks."

Lots of things have to change, and from this story at least this one is clear: the way the medical community deals with its patients.

@Christine: You've misinterpreted my comments. As I said above, follow up is an important issue on both sides -- I don't "blame" Goody for not following up as you say ... if you read my comments, if anything, I blame her doctors for not making it clear that she needed to. My point is that situations like hers (and yours) are examples of why it's important for doctors to follow up on this information personally -- to explain the results and the importance of treatment. That gets women into the clinics quickly.

I made no judgments about low income or minority women. If you re-read my posts you'll see that my comment about reading and comprehension was not in reference to income or race at all -- that was your own assumption. I said reading and comprehension levels vary among all patients, which is just one reason letters are not ideal in these situations. There are entire fields of study devoted to that fact. I also said that follow up is a significant problem for all women. Unfortunately, however, this entire subject impacts low income and minority women more than others -- women in those groups die of cervical cancer at higher rates than other women. Which is one of the many reasons it's important to get this information out there.

By "follow up" I'm not just talking about what the patients do or don't do -- I'm talking about the entire system: Doctor, patient, clinic, etc. Follow up is a complicated process involving lots of people. There have been many, many studies looking at the problem of follow up and how it might be solved. Personal contact from doctors is one of the possible solutions.

In terms of the media: I agree it's the media's job to report the story -- my point is that in most cases they haven't done that well. They've left out key information that women should know about. I haven't called for editorializing -- I called for good reporting.

Hello everybody . I am a medical doctor and I fear that the blame for such an occurance as in the case of Jade Goody , ison both sides . Many patients tire of following up on procedures and many doctors , the multitude of doctors in this country SA at least , will never ever call a patient . THe other governing factors with the medical profession is that they look at volume ( turn around of patients ) rather than quality of service . Doctors here also are very detached and quite mute to their patients needs so it can become very tiring and frustrating for a lay person to pursue any form of meaningful communications with the doctor and simply opt to ignor the situation .

I can say to a fair extent this is also the case in the UK although it was not always like that . I am a diabetic . On a trip to the UK in 2004 ( for my step son's funeral ) I ran out of metformin tablets which I use to control my condition . I onviously went to the local doctor and that in itself was a telling experience . The reception was poor . As a foreigner ( although my sister in law had made the appointment for me ) I was obliged to wait until the last patient was seen to . Iarrived at 09.00hrs and left at 12.18hrs . My visit consisted of an exchange of information ( very basic , name address , country of origin etc ) .

The doctor simply wrote me a script to be collected from the pharmacy . He complained that my dosage was too high but refused to listen to my explaination and the cause which were the following : I have lymphoma , a cerebral aneursym and I was under tremendous stress and strain owing to the circumstances of my step son's death etc. Being a medical doctor did not help me . He was God almighty and didnot want to know . For this they get paid by the NHS . So indeed the NHS SHOULD have followed up vigorously but they did not and Goody allowed herself to be cajoled into a similar situation that I had found myself in and did what might have seemed the best thing at first and that is to leave quietly because in the UK it is considered poor manners to complain or make any demands !

Jade Goody as I have stressed in my past articles is one of many women in a system that failed them .

I read the article as well as all the posts. Let me tell you my story. When I was 24 I had my FIRST pap smear done and the results came back abnormal. They did a colposcopy and determined I can moderate dysplasia. (CIN II) I was very nervous because that was the first time I had visited an GYN. My mother for some reason never mentioned I should go for an exam in my teens, and I didn't ask to go either. When I graduated from high-school I was automatically dropped from my dad's health ins.(and wasn't a full-time student after) I had no health ins or regular Dr. appts for 6 years. At the age of 24 I finally got a job that offered good health ins. Back to my colposcopy. It was VERY painful for me. After that the Dr. did laser surgey and he HIGHLY recommended I get a 3 month follow-up colposcopy. Unfortunately I blew it off due to the pain of the first colposcopy and I was moving to L.A. around that time. However, I was nervous I did the wrong thing by blowing it off but by I was living in L.A. again without health ins. I prayed the Dr. and laser treatment did a good job of getting all the dysplasia. He also stressed the importance of having yearly PAP smears, and I listened to that. I have had a PAP done EVERY year for the past 20 years since my laser treatment. (all negative) Many times I had to scrape the money together to go to a GYN, but I did it. Probably because I'm a hypochondriac at heart, I made myself go.

Its so sad to see someone so young and vibrant die like this, but we can't blame anyone either.

I feel that Jade's situation highlights the importance, of follow up by other methods than mail, I also feel that it hightlights the importance, of stressing to the patient just how important follow up is.
Many issues can effect a person's life, and judgement.
I have suffered depression for two years, within that time, I missed my smear, and have just booked an overdue one. I stopped opening mail, and lost control of my life. Major depression affects 1/8 people, and depression affects 1/4 people, so I have read. It is often in this state where you are disorganised and irresponsible and lack self care. People can not always be told to be responsible in this way, as to follow up smear results. There are so many life stresses these days, and I feel it should be someones job to call you and explain that this is more important than anything !! There was an interesting post in the above, from a woman who complained about a phonecall at work and would have rather have received a letter in the mail. However she is alive and not terminal. Would you prefer an upsetting bad timed phone call, or to be terminal?
Look at Jade's life after the dramas from her second big brother, she went into the priory for depression, she was villified by the media and the country, maybe she was totally preoccupied and not all that grounded. Phone calls need to be made, and those with important information need to pass this on. Also Jade went into hospital with collapse and abdo pain, and loss of blood. A post earlier, said she probably didnt tell them about her history of abornmal smears ! Was that up to her, to try and connect the two, or should this be in her notes, which should be read by the physicians? Also abormal smears, shouldnt these be highlighted in the notes? As they are quite signicant surely???
Bad periods she was told, how many people collapse due to bad periods? Surely not many !
I think poor Jade has been let down by the NHS, and that is not to say that she hasn't had wonderful postdiagnosis care, and that's not to say that there are not some fantasic doctors and nurses. But somewhere the system didnt work for her, and didnt recognise the fact that she may not understand fully the implications of not responding to the letter.

I feel that Jade's situation highlights the importance, of follow up by other methods than mail, I also feel that it hightlights the importance, of stressing to the patient just how important follow up is.
Many issues can effect a person's life, and judgement.
I have suffered depression for two years, within that time, I missed my smear, and have just booked an overdue one. I stopped opening mail, and lost control of my life. Major depression affects 1/8 people, and depression affects 1/4 people, so I have read. It is often in this state where you are disorganised and irresponsible and lack self care. People can not always be told to be responsible in this way, as to follow up smear results. There are so many life stresses these days, and I feel it should be someones job to call you and explain that this is more important than anything !! There was an interesting post in the above, from a woman who complained about a phonecall at work and would have rather have received a letter in the mail. However she is alive and not terminal. Would you prefer an upsetting bad timed phone call, or to be terminal?
Look at Jade's life after the dramas from her second big brother, she went into the priory for depression, she was villified by the media and the country, maybe she was totally preoccupied and not all that grounded. Phone calls need to be made, and those with important information need to pass this on. Also Jade went into hospital with collapse and abdo pain, and loss of blood. A post earlier, said she probably didnt tell them about her history of abornmal smears ! Was that up to her, to try and connect the two, or should this be in her notes, which should be read by the physicians? Also abormal smears, shouldnt these be highlighted in the notes? As they are quite signicant surely???
Bad periods she was told, how many people collapse due to bad periods? Surely not many !
I think poor Jade has been let down by the NHS, and that is not to say that she hasn't had wonderful postdiagnosis care, and that's not to say that there are not some fantasic doctors and nurses. But somewhere the system didnt work for her, and didnt recognise the fact that she may not understand fully the implications of not responding to the letter.

@Skloot: "The Guardian claims that Goody's illness has led to an anecdotal 20% increase in pap smears in London because cervical cancer is now all over the headlines, which is great if true."

That's not necessarily true. To quote UK health guidelines: Cervical cancer is rare in women under 20. Teenagers' bodies, particularly the cervix, are still developing, which means young women may get an abnormal result when there is nothing wrong. This could lead to unnecessary treatment so screening young women might do more harm than good. Under the age of 25 years, invasive cancer is extremely rare, but changes in the cervix are common.

That's why screening programmes here don't cover women under 25. If a lot of the 20% increase smears is from younger women - not unlikely given that they're the target demographic for a lot of the celebrity magazines covering Jade Goody, then actually the result wouldn't be great at all...

As a random example of UK medical qualification standards, I applied for a job around 1992 in Glasgow whilst receiving treatment for depression, and because of this was sent to be examined by a doctor who told me there was no such thing. On the plus side, that may have been necessary to getting the job.

@Martin
It's true that in most cases screening isn't recommended for girls under 20, but it often is for girls who become sexually active early. This is because of the link between HPV and cervical cancer.

Also, the Guardian don't say whether this putatative 20 per cent rise in the uptake of screenings is among women already offered them (i.e. 25 and older) or among younger women.

I'm so glad you posted this article. When I heard about a 27 year old with terminal cervical cancer, I FREAKED OUT!!! I know some cases slip through but to know more about the situation makes me feel better. I'm sorry Miss Goody died but she has definitely brough a strong reminder of why paps and follow up are important. I hate going to the gyno more than anyone can know. But the thought of dying of cervical cancer keeps me going.

I know from personal experience that I cringe with the thought of the pain in the procedures to remove the dysplasia and weighing the pain over cancer. If they would give pain medication when doing these procedures then women wouldn't hesitate. I even had one dr tell me when doing the biopsies that it was usual for women to scream and curse so go right ahead. I thought how barbaric. If you know it hurts that bad why not medicate? How would they like someone biopsing their testicles wo/ meds? My current dr did the last colposcopy under anesthesia during another procedure to be humane.

Thanks to Jen for raising what I think is one of the main issues here. The pain factor. You even state in the blog post that the reason Jade was afraid to go back to the doctor was in part because of the pain. I think this is a reason many woman would be afraid, especially when it's affecting such a sensitive and easily hurt area.

I'm already afraid of getting smears when I hit 25. The idea of some doctor sticking a cold hard piece of metal in me when I'm totally unaroused just makes me feel sick inside. I'm actually seriously considering taking a bit of time out in the loo and trying to get myself excited before going in; the total embarressment of being slightly flushed would be worth it to make what I've heard it a kindof painful proceedure more comfortable.

I had a pap smear done in 2001, the doctor said if you do not hear from us, all is well. well i call anyway and was told if you did not get a call, all is well. I hung up, ok. next year 2002 i go in and i am told i had a pap smear last year in 2001 i should have been called back on, but was filed away by mistake. well to make the story short in this time, i now had cervical cancer. I tried to sue the doctor but was told i could not, you must have a case over so much money to sue the dr. for malpractice. They did not think my case was worth it, because i did not loose any body parts. I did have surgery and was lucky they got all of the cancer and the surrounding tissue as of today my pap come back good. I am pretty upset, because if i did not go back that following year and went in 2003, what would of it been like then. i should have been able to sue this doctor for her mistake, negligence on my part. To bad these doctors do not have a better system. it should be computerized, red flagged and logged, this way if the dr office filed the paperwork, it would red flag the patients name until it is logged in that they spoke with the patient regarding results. It is a shame women have to go through this. I would like to know to this day, why this dr. was not help accountable for the surgery and stuff i had to go through

I recently visited the doctors with a range of symptoms that I thought could indicate to cervical cancer (after reading the symptoms on the internet) I live in the uK and I am 24 so I am still too young to be given a smear test on the NHS. I asked the doctor that as I am soon to be 25 could I- on this occasion- have my Pap smear early and guess what he replied.... I can do one for you but once it reaches the lab for testing and they see your age- THEY WILL THROW IT IN THE BIN!