What Does It Mean to Have 'Relapsed Breast Cancer?'

Thanks for the great blog posts about Elizabeth Edwards. I've linked out to your post in my blog (http://www.revolutionhealth.com/blogs/cline/elizabeth-edwards-ca-3132) on Revolution Health's (http://www.revolutionhealth.com/) site. FYI, I'm the cancer center manager.

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The news is that she has bone and possibly lung mets. The bone mets were discovered when chest pain revealed a broken rib due to the mets. It appears that she originally had a stage II, ER positive Her2Nu negative tumor.

One thing that struck me was a comment she made in her press conference. She stated that she doesn't plan to live her life any differently, or let the progression change her plans.

While this is a very laudable goal, as a breast cancer patient, it troubles me a bit that a public figure seems to feel the need to reassure people that she's not going to let a little thing like cancer slow her down. Is there some unspoken shame in having cancer? Is there something wrong with taking time to treat your illness, or to admit that it will change your life in profound ways?

Laura

I'm a four-year survivor, and in that time, I've had one friend with Stage 0 breast cancer (mine's Stage IIIB for anyone needing to keep score) who's doing well so far. I've also had three other friends with lung cancer (two were smokers, one was not, again for anyone needing to keep score), two of whom have died. While Mrs. Edwards' upbeat approach (in public, anyway) might seem unrealistic to some and downright offensive to others, let's bear in mind that we all have different coping mechanisms. The diagnosis itself, and the subsequent re-diagnosis, has, I think, already changed her life in profound ways, as it would mine or anyone else's. From my experience, it's the lung cancer friends who, paradoxically you might think, seem(ed) the most determined to "beat" the disease -- and one is, at least so far, succeeding: she has mets to the brain, lungs and liver, but still takes chemo and still comes in to work as much as she can (to keep her health insurance, granted, but still, most of us faced with such a grim prognosis would probably choose to do something else with whatever time we have left). Whether that simply speaks to the power of a positive attitude or a sense of shame in having cancer -- well, I honestly couldn't say. I would like to think it's the former. To paraphrase the protagonist of "The Shawshank Redemption," we can either get busy living or get busy dying. Which we choose is the ultimate personal decision, but I'd like to think Mrs. Edwards, like my lung cancer survivor friend, is choosing the former, to the extent her health allows. My heart goes out to her and her family.

Craig thanks for being so honest about breast cancer. I was diagnosed on April of 2006. I have completed all phases of treatment from having surgery to take out the 1.5 cm lump, chemo and then radiation. After that I started taking Aimidex. I am just starting to see my oncologist on a regular basis. (I see him every three months for 2 years and then will see him every 6 months for 3 years). My first trip showed no signs of cancer.

After reading about Mrs. Edwards I now am feeling that my cancer could come back. It's a scary feeling!

Diagnosis: Invasive ductal carcinoma of r. breast. T1C, N1, MO, state IIA, positive estrogen and progesterone receptors, and neg. HER2/neu.

I know everyone's breast cancer is different, but can't help wonder if it will come back. Everytime I hurt somewhere I think it might be the cancer...

By the way, I found your site by accident and glad I did.
thanks,
Carla

Me again.

The press is now reporting that Ms. Edward's prognsis is "good."

"Good"? Prognosis for stage IV breast cancer that's metastisized after two years of chemo and hormonal therapy is "good"?

Of course, no doctor wants to be in the position of having to tell the world about a patient's prognosis. But, I also wonder if this is more of the media's sugar coating of breast cancer. When I was diagnosed, many people told me that I was lucky because I "only" had breast cancer, which everyone knows is now curable (I was thought to be stage III at the time). A friend told me that her GP told her that no one dies of early stage BC anymore. Really?

I understand a patient being in denial - but a whole nation?

Laura

Thank you. I appreciate your take on this.

I am a social worker (health advocate and counselor)and work with 45 women who have experienced acute breast cancer. I do not use the word survivor because it connotes that the cancer was only an acute contition, you "cut it out, poison it, burn it" and it is gone.
But, I attended the San Antonio Breast Cancer Symposium in December as an advocate: it increased my understanding of this "disease" immensely, - it is another autoimmune process - a systemic, chronic condition within the whole organism. I have "heard" several, experienced cancer researchers refer to cancer cells as "immortal". Some cells always survive chemotherapy, and stem cells can survive radiation. The conditions in the "host" which allows gene mutations to eventually become unable to prevent excess division (disabling tumor suppressor genes), and cell traits acquired from the local environment (stroma) enabling them to migrate, thus leading to invasion of another part of the body (already receptive to this invasion by biological changes)are a fascinating horror story. Our focus has been inverted: we have been myopic. Instead of focusing on the tumor cell, we must "zoom out" and pay attention to the system. You "can't have one without the other".
At the Symposium, I was impressed by the 8000 dedicated people from all over the globe joined in the "war" to understand these mechanisms, so that effective, lifetime management of the "cancer" can be achieved. The "cure" of any autoimmune dysfunction is still a long way off, but I felt that I was part of something much greater than my small contribution. As Hannah Arendt said of the shared sense of purpose experienced during wartime, there is a "community of meaning" in this work against a formidable opponent. If only we could join with all nations to divert our "national" defense funds to basic science research. Science is incremental.

I am currently undergoing chemotherapy for a Stage IIA breast cancer and have felt fairly confident that I was taking the most aggressive treatment approach and that my prognosis for 5-10 year survival was up in the high 90s (86-88%). This makes me curious as to what Elizabeth Edwards original diagnosis was (stage wise) and what treatment protocal she followed and what her original prognosis was for 5-10 year survival given her stage and treatment. Does anyone have any information on this?

I'm 45 and I always assumed that I'm at high risk for getting another cancer, but I was hoping that it would be when I was in my 60s or 70s, and not again within the next 10 years. This story increases my near-term fears - which I had well under control until now.

I wish her the best and hope she beats the odds.

(BTW, I have a friend who was diagnoses Stage IV BC over 5 years ago - she was on chemo for one year and is now is remission 5 years later. She must be an outlier on the statistics curve. But now you've got me worrying about her too!)

MET

Craig, Mrs. Edwards is 57, therefore probably post-menopausal.

:: it troubles me a bit that a public figure seems to feel the need to reassure people that she's not going to let a little thing like cancer slow her down.

It's too bad she has to go through this in public. If everybody facing stage IV had all their philosophical statements about how they're going to proceed published in the newspaper, they would all get highly criticized.

I always say: "Everybody has to get through their cancer in their own way." (From a psychology-speak standpoint, I'm talking about self-efficacy, by any means necessary.) Whether that means running a political campaign, or riding a motorcycle up Big Sur, or sitting in bed with ice cream and a stack of Seinfeld DVDs -- people facing their own death should do what's right for them and try to ignore the disapproval of others, IMO.

:: it is another autoimmune process - a systemic, chronic condition within the whole organism.

Like most qualifier-free statements about cancer, that's wrong. If you flew a helicopter that was dumping cement on Chernobyl and then got cancer, it was not due to a systemic, chronic condition: you got screwed because an external agent messed up a whole bunch of your cells.

Talking about cancer is like talking about car wrecks -- most accurate when confined to what we know or don't know about a single incident. Can I cure car wrecks by inventing better tires? Definitely not, but I might cure some car wrecks. Will there ever be a cure for all car wrecks? Nope. Can't ever guarantee a tree won't fall on you, or an insane person deliberately broadside you in an intersection. Don't all car wrecks have some things in common? Sure, they all involve bending metal, but that ignores the very different root causes they have, and distracts us from trying to address those different kinds of root causes.

As the head of Fred Hutch says, you have to wonder whether it would really help us to know "the cause" for all cancers if the cause is behavioral. After all, we know with a high degree of certainty the cause of a whole bunch of lung cancer, but the worldwide incidence of smoking cigarettes has not much changed.

Cancer is yet another problem for which the war analogy is a lousy one. It makes people think we're going to "win" at some point and have a big Victory over Cancer parade in Times Square. Cancer and car wrecks will always be with us, and we'll always be working on trying to reduce the number of incidents, and make life more tolerable for the victims.

Ronburk's analogy to Chernobyl is a good one and unfortunately not one that gets much attention when talking about cancer. Breast cancer has increased from 1 in 20 women during the 1960's to 1 in 7 now. Out of about 2000 new chemicals introduced to products in the US per year, 95% are never tested for their health effects. We are surrounded and inundated by cancer-causing agents, not only from radiation but from mutagens and hormone-disruptors in our food, toys, plastic packaging, shower curtains, auto exhaust, dry-cleaning, the list goes on and on. The EPA is an arm of industry now, and industries spends millions per year to discredit, suppress and supplant independent research on environmental carcinogens. By the time children born today grow up, their breast /prostate cancer rates will probably be over 50%. We live in a toxic world.

Cat, while I agree with the gist of your comment, I don't agree with this part:
" Breast cancer has increased from 1 in 20 women during the 1960's to 1 in 7 now. "

In the 1960s, much of what is now caught by routine mammogram, especially DCIS, would never be diagnosed. Many researchers believe that it is inacurrate to lump these these non-invasive cancers, and even some invasive but non-aggressive ones, into the statistics for breast cancer rates and more importantly, into the statistics for cure rates, because they are not tumors that would ever matastisize. You can't compare the breast cancer rates from the 1960s to today unless you only count the cancers that would have been diagnosed in the 1960s.

My oncologist believes that invasive breast cancer rates will rise along with diabetes more because of the obesity problem in this country than because of any other environmental issue. She is a researcher who studies the ties between obesity, estrogen, and breast cancer, and she believes that there are strong links between obesity and breast cancer.

I was initially diagnosed with Stage IIB breast cancer at the age of 32. Ten months after completing chemotherapy, the cancer had returned to my axillary and supraclavicular nodes. Since then, I've had a lesion in my brain removed and most recently undergone cyberknife therapy to hit some pulmonary nodes. I am 39 years old now (40 in August WOO HOO!), and have been receiving chemotherapy every other week for the past 5 1/2 years. I am a triple negative here, so when I say chemo, I mean chemo. Not hormone therapy, not Herceptin.

PS -- I have a husband, seven year old, a mortgage and a full-time job.

I am shocked at how many people really think that breast cancer is curable.

I wish Mrs. Edwards all the strength in the world. I'm sorry she has to go through this. But, it's about time people stopped being all "pink" about breast cancer and recognized it for what it really is: A killer that takes 200,000 women a year.

Correcting my horrible mistake above: approximately 200,000 women will be diagnosed this year, and approximately 40,000 will die.

Apologies!

I am a 59 year old, 6 year 3 1/2 month "survivor" of bc (but who's counting?). I had none of the tell tale 'signs' of bc nor did my tumor show up on a mammogram and only showed as a discrete mass on my ultrasound. If it were not for the fact that the lump was palpatible and that I had done an self exam I would not have found it nor would the radiologist have done the ultrasound. I am stage IIIA with 6 out of 6 nodes positive, 2 tumors with the largest one being 12cm x 3 cm x 1 cm and the other 1.5 cm in size...er+...rapid growing, aggressive tumor. From my case study, one would think that by now I would have had a recurrence to stage IV. Miracously I have not. My oncs keep close watch on me. I still see one of them every 3/4 mos. and have just moved from tamoxifen to femara.

Then I look at Elizabeth Edwards, and yet with all of the money she has and the power of the press that she has, I am reminded once again at how undiscriminating this awful disease is. I see all of my bc sisters on the support boards I belong to and how many of them have been taken by this disease and I am humbled.

"Lucky to only just have breast cancer"...tell that to Elizabeth Edwards and all of the other women I know and have known that have been the targets of bc; either as a first time target or as a stage IV target. I can safely say none of us feels lucky. Those of us who do not currently have stage IV either wonders when we will become stage IV then instantly in the next thought thank God that we don't have stage IV and "please may I never get stage IV" (but we never say it out loud). As for bc being curable...as was pointed out to me by my one very sage onc, "You know that you have been cured of bc once you die of something else."

Mrs. Edwards is truly very courageous and will be lauded for the dignity in which she handled herself during her death...and she will. What is sad though are all of the other women that I know who have died from their stage IV dx, and who have been every bit as courageous and who have shown equal dignity, is that (except for loved ones and bc friends) no one will ever know about them. I truly hope that the Edward's tragedy at least be turned into some kind of victory for all who have been struck by bc or who will be struck by bc, in that the public finally learns the truth about bc.

It is not the 'lucky' cancer to get (no cancer is lucky). It does not have the '5 year cured' stamp of approval attached to it. It is as variable as the weather. More and more younger women are being dxed with bc (leaving behind more and more younger families). No one does anything to cause bc (not even being female can be blamed for bc). BC damage is not limited to only the patient, but rather affects everyone surrounding the patient, especially the family. BC leaves a very real, visible permanent physical stigma on the patient (otherwise most women would not put themselves through the painful process of reconstruction).

There is so much more I could say, but I have been on the bandwagon for enough time now. I just pray that whatever God intends for not only Elizabeth Edwards, but all bc patients, that He be as merciful in His judgement as He can possibly be.

Thanks for the explanation. I wish my family and friends would read it because they take what they read in the press and think that it applies to me also. Hopefully the things they are reading don't necessarily apply even to Mrs. Edwards.

As an environmental psychologist the tendency to link psychological "states" to cancer has both annoyed and worried me for many years. Health Psychology is thriving on this very assumption and I don't like it at all! (my PhD researched psychotropic drugs, environment, and behaviour)

Hi.

A well crafted blogpost, but I was a bit curious about this:

5. Estrogen and progestrone receptor status (agressive tumors are more likely to be ER and PR negative, and such tumors can often be treated with oral medications at the time of relapse, rather than chemotherapy)

Just want to clarify which oral medications you are talking about. If it's tamoxifen or one of its stablemates, don't the tumours have to be at least one of ER or PR positive?

Last September one of my now 30 year old daughters was diagnosed with Stage IIIC aggressive non hormonal invasive ductal carcinoma and given less than six months to live. Since then she has had the lump removed and 11 of 14 lymph nodes removed test positive for this cancer, given at least 3 regimens of chemotherapy, radiation, a clinical trial of AVASTIN which is given in chemo form IV(this for 6 months every other week combined with chemo regimens), two ports because one was crushed in mammography, many needles and blood samples, poking sometimes aimlessly that could not draw blood because her veins are so small. These things hurt her and us very much as we continue to try to hold up but watch in horror as she becomes the ultimate human pin cushion for substances that apparently have little or no positive effect.

Yesterday, after complaining she was having a hard time breathing and coughing and having back aches for about two weeks, having been given antibiotics and other medicines to add to her collection, AVASTIN was postponed and she was given a CatScan and told that there was evidence that this cancer has spread to her lungs. She gets a Pet Scan done this Wednesday to determine where else in her body it has metastisized to. Her doctor said she might have 2 years to live at the best prognosis for life span.

Needless to say, she is as devastated as she was when she was told originally and given 6 months to live.

What treatments are out there for this metastatic disease? Her oncologist said he can give her a chemo pill.

I have jokingly called my diet of beans and fruits and vegetables, "my daily chemo". None of our children took to vegetables all that well and most still like the protein in meats and fats and not much fruit. I wish I and my wife had done a better job at that, but it seems even those that do "everything right"?, still get this stuff, cancer.

My sister in law just died of metastatic cancer that noone in her family apparently knew about! She went through chemo and radiation two years ago secretly! Hers turned into adenocarcinoma of unknown origin! She was idolized because she did so much for the community.

I want my daughter to live, but I watch in disbelief as she gets needled one after the other and I can't imagine myself having to go through all that pain and surviving! Do you have any suggestions for our situation?

basssss spami

very good

Correcting my horrible mistake above: approximately 200,000 women will be diagnosed this year, and approximately 40,000 will die.