Wednesday, March 28, 2007

VIGILANCE

For a long time I have been advising fellow BC survivors who had breast conserving surgery, lumpectomy, to not rely solely on mammograms or ultrasounds. For one thing, many cancers do not show up on these tests. Particularly if you have dense breasts. My first cancer showed up on mammo but did not show up on ultrasound and the option of "wait and see" was offered because of the lack of sonographic evidence of something suspicious. I chose to get a biopsy and I am glad I did because my cancer was found while it was still small.

I had a lumpectomy so I was followed very closely by my medical team because I had an aggressive cancer, I was diagnosed young, before the age of 40, I had dense breasts and women who have breast cancer in one breast are more likely to develop it in the other. Our surveillance consisted of alternating mammogram/ultrasounds with breast MRIs. Every six months. For example, in January I would get a mammo and in June I would get the MRI.

Insurance companies are not fond of this practice. In fact, they can find it "not medically necessary" even if you are a cancer survivor. So you have to fight for it until they say yes. I had one fight with my insurance company where they would only approve the breast MRI in one breast. I would have to "re-apply" for the other one. Since they study BOTH breasts at the time of the test this was an insane denial. Eventually we worked it out.

There are two schools of thought out there in Cancerland. One is, don't get scans because if you find metastatic disease it is too late anyway and you can't be cured. They believe that regular screenings only cause stress.

The other school of thought is- GET SCREENED OFTEN- because you may find a cancer BEFORE it has spread, and if you find a metastatic lesion that is only in one area, such as a spot on the bone, you can treat it and often eradicate it BEFORE it spreads to more organs.

I am a member of the GET SCREENED school of thought. I have been vigilant and frankly a pain in the ass. But it paid off. Because a NEW cancer was found, by breast MRI, in my "good" breast. This is a new primary, which means it is NOT a recurrance of my first cancer, therefore it is not my first cancer "coming back." This is very good. Because a new primary is just like fighting your cancer for the first time- while it is still curable.

However, had I not been getting screenings and MRIs it would NOT have been detected. And this is a big cancer. It also had spread to four of my lymph nodes. Had I waited? It very well could have spread to become metastatic disease.

So girls: GET SCREENED. Yes, it causes stress. Take an ativan or have a gin and tonic-- whatever gets you through the anxiety of waiting for results. Because you don't want to find ANYTHING too late when it truly is untreatable.

And now, reprinted from today's NY Times, is an article to help back up your argument when the insurance company gives you a hard time.

March 28, 2007

Two reports being published today call for greatly expanded use of M.R.I. scans in women who have breast cancer or are at high risk for it.

The recommendations do not apply to most healthy women, who have only an average risk of developing the disease.

Even so, the new advice could add a million or more women a year to those who need breast magnetic resonance imaging — a demand that radiologists are not yet equipped to meet, researchers say. The scans require special equipment, software and trained radiologists to read the results, and may not be available outside big cities.

Breast M.R.I. costs $1,000 to $2,000, and sometimes more — 10 times the cost of mammography — so a million more scans a year would cost at least $1 billion. It is sometimes covered by insurance and Medicare, sometimes not.

One report is a set of new guidelines for using M.R.I. in women at high risk for breast cancer, and the other is a study in The New England Journal of Medicine showing that in women who have newly diagnosed cancer in one breast, M.R.I. can find tumors in the other breast that mammograms miss.

M.R.I. has drawbacks. It is so sensitive — much more so than mammography — that it reveals all sorts of suspicious growths in the breast, leading to many repeat scans and biopsies for things that turn out to be benign. For women who are likely to have hidden tumors, the prospect of such false-positive findings may be acceptable. But the risk of needless biopsies and additional scans is not considered reasonable for women with just an average risk of breast cancer, and is the main reason M.R.I. is not recommended for them.

The new guidelines, from the American Cancer Society, are being published in the society’s journal CA: A Cancer Journal for Clinicians. They recommend scans and mammograms once a year starting at age 30 for high-risk women.

High risk is defined as a 20 percent to 25 percent or higher chance of developing breast cancer over the course of a lifetime. (The average lifetime risk for women in the United States is 12 percent to 13 percent.)

The high-risk group includes women who are prone to breast cancer because they have certain genetic mutations, BRCA1 or BRCA2, or those whose mothers, sisters or daughters carry those mutations, even if the woman herself has not been tested. These mutations are not common — they cause less than 10 percent of all breast cancers — but they greatly increase a woman’s risk, to 36 percent to 85 percent.

Women with even rarer mutations, in genes called TP53 or PTEN, are also advised to be screened, as are women who had radiation treatment to the chest between ages 10 and 30, for disorders like Hodgkin’s disease.

Others at high risk include women from families in which breast cancer is common, especially in their close relatives, even if no genetic mutation has been identified. Women and their doctors can estimate their odds by using one of several online risk calculators that factor in the medical history of both the woman and her family. A simple calculator is available at http://www.cancer.gov/bcrisktool/.

But different calculators can give quite different results, and women may need help from their doctors to interpret the results, said Dr. Elizabeth Morris, a member of the expert panel that drew up the guidelines and director of Breast M.R.I. at Memorial Sloan-Kettering Cancer Center in Manhattan.

“Just to figure out who should have it will be the hardest thing,” Dr. Morris said. “A lot of that onus is put on the referring physician. A lot of women are going to think they’re high risk, and they’re not.”

The cancer society said that for women with certain conditions, there was not enough information to recommend for or against M.R.I. screening. The uncertain group includes women with very dense breast tissue on mammograms, and women who had breast cancer in the past, or growths called carcinoma in situ or atypical hyperplasia.

Dr. Robert Smith, the cancer society’s director for screening, estimated that the new guidelines would add one million to two million women a year to the number who should have breast M.R.I.

Increased demand for such scans could easily outstrip the capacity, even though the number of centers offering them has increased markedly in the last five years, said Dr. Constance Lehman, another member of the panel that wrote the guidelines and a professor of radiology at the University of Washington. She said professional societies in radiology were scrambling to provide training and accreditation for the scans.

Insurers will probably cover the scans because the new guidelines are based on good evidence and promoted by a respected medical group, said Peter V. Lee, president of the Pacific Business Group on Health, a nonprofit coalition of large buyers of health care that cover about five million people. Huge amounts of money are now wasted on unnecessary M.R.I., Mr. Lee said, adding: “Here we have a case where there’s evidence. Hallelujah! Let’s use it.”

Not every imaging center is qualified to perform such scans, but some that are not up to par may offer it anyway, so patients must beware.

Special equipment is needed: a powerful, “high-field” magnet and a special breast coil to generate a magnetic field around the breast. The scan is done with the woman lying on her stomach on a special table with openings that let the breasts rest in wells surrounded by the coil.

“And you have to make sure they’re doing enough, not one a week, and make sure they have biopsy capability,” Dr. Morris said.

If the breast scan is done at a center that cannot perform biopsies, a woman with a suspicious finding may have to start all over again at another clinic.

The second new report describes a study showing that in women who had cancer in one breast, an M.R.I. scan of the other breast found tumors that mammograms had missed in 3 percent of the women. Researchers say M.R.I. can help women who already have one cancer by detecting a hidden tumor in the other breast, enabling them to have both cancers treated at once instead of having to go through treatment all over again when the second tumor is finally detected.

Research has shown that 10 percent of women who have cancer in one breast will eventually develop it in the other as well.

“This study supports the recommendation that women who are diagnosed with breast cancer consider the benefits of a breast M.R.,” said Dr. Lehman, the senior author of the study. “What we think is most important is that we understand the full extent of a woman’s breast cancer before her therapy is initiated.”

The scans are recommended in newly diagnosed cases, but not for most women who had breast cancer treated in the past.

Currently, women with newly diagnosed cancer in one breast are given mammograms of the other, but only a minority are offered M.R.I., Dr. Lehman said. This year, about 180,000 new cases of breast cancer are expected in the United States.

Some surgeons think every woman with a new diagnosis of breast cancer should have an M.R.I. of the other breast, and some think no one should, Dr. Morris said. She said the scans were most likely to be useful in younger women with breast cancer and dense tissue that hides tumors from mammograms. In older women with small, early tumors and clear mammograms, she said, such scanning is less important.

The study findings will make it harder for insurance companies to refuse to pay for such scans of the second breast in women with breast cancer, said Dr. Etta D. Pisano, another author of the study and a professor of radiology at the University of North Carolina.

The study, conducted at 25 medical centers, included 969 women with recently diagnosed cancer in one breast and a normal mammogram on the other. All were given M.R.I. scans, which discovered cancers in the supposedly healthy breast in 30 women, 3.1 percent of the group. Nearly all the cancers were at an early stage, and were treated at the same time as the ones originally discovered.

Without the scans, Dr. Lehman said, the tumors would not have been found until later, and then the women would have had to go through surgery, and perhaps radiation and chemotherapy as well, all over again. “We know cancers diagnosed later in these women don’t do as well as cancers diagnosed initially,” she said.

But to find 30 cancers, 121 women had biopsies, which were ordered because of abnormalities on M.R.I. That means 91 false-positive scans and biopsies of healthy tissue, and a false-positive rate of about 10 percent. Dr. Lehman said most cancer patients were willing to accept the risk of a false-positive and a biopsy in order to find out whether there was anything to worry about in the other breast.

The study was paid for by the National Cancer Institute.

Friday, March 23, 2007

It's What's Inside

We are all pretty shook up today hearing the news about Elizabeth Edwards, watching her on television as not a presidential candidate's wife, but rather as one of our sisters. She put a face to what we all fear. We fear those words almost as soon as we hear the words we have cancer. We spend every horrifying test and scan praying we don't hear this time "your cancer is back"... but we keep going to our scans because in our hearts we know that if it is back- we want to find it as soon as possible.

Cancer is a revelation to us all about just what we have inside us. Some people go through their whole lives and have no idea the depth they carry within them. But those of us who have been tested by adverse conditions, runs of true bad luck or the words "you have cancer" all know that there is a reserve deep inside us all that reveals itself to us when we most need it. It is that "strength" and "courage" and "bravery" everyone comments on. The cancer didn't bring those things TO us. It made us reach deep within our souls and find that we DO HAVE what it takes to get through any situation no matter how hard and how horrid it may be. It is there waiting for us. And only those of us who have had to tap this incredible resource know it is our secret weapon. It is something the unscathed have no clue that they posses the same reserve- because they have never needed it.

When you break a bone it grows back stronger. We get broken when we are first diagnosed, but as the years go by and the treatments end the break heals- but it heals stronger than ever before. It is designed that way so that in the future if we are faced with the unthinkable we not only can handle it, but we can handle it BETTER.

For myself, hearing that my tumors were cancer and then that I needed the most aggressive approach to dealing with it, and then learning how it had advanced was devastating. But I also knew where to go within me to pull myself up and get through everything asked of me and do it so much better than I did the first time, because this time, my body had already shown me just how truly capable I am.

Elizabeth Edwards first tapped her inner reserve when she lost her son. When her cancer came she buckled down and did what was necessary and pulled from that inner strength that had revealed itself to her after she lost her child.

Now she is facing this. She knows she has what it takes. Because of our secret weapon that no one other than a cancer survivor can understand, she knows she is going to make it because that is exactly how this should be faced. To have her wonderful husband quit to stay home with her so they could sit around waiting for her next symptom is like ringing the dinner bell for the Beast.

So they beat on. They do what they have to do healthwise, they do what they dream of accomplishing politically and they press forward... can you imagine how pissed off the Beast must be at them for blowing him off and continuing with their lives? GOOD! Let it be a lesson to that miserable Beast!

We all have it inside us girls. And if any of us should ever hear what we fear the most, remember, you've got the right stuff. You have got what it takes to take on the beast and live your lives. And LIVE is what we must all do everyday.

Today we may feel scared and alone, or in a panic about a scan, but the scan will come and go and the news is what it is. It is no way to live, but the only way to counteract it is to use your incredible reserve and move ahead and don't look back.

And we will beat on and on and one fine day we may hear the words Ned or Stable or even "the new drug has eradicated your cancer completely"

It is all there-
our strength reserves, the hope for the future and wonderful lives to lead if we remember that cancer must never live rent free within us. We RID ourselves of it and keep close watch on any sneak attacks. We take our meds. We get our scans and we remember that EVERY SINGE CANCER is different. The stats are on our side- unfortunately some stats are not- and we must be proactive and smart about our care. And as the Edwards said, "Move Forward"- always keep moving.

And so, sweet sisters who I love so much, we keep on fighting, and we go outside and fill our lungs with sweet spring air and we stretch out our arms farther and farther ready to embrace the next breakthrough... and we know we have each other and millions of other women who are our sisters doing the same thing.

I am so inspired by EE and her attitude to keep on going and not let the beast ruin any of her plans is the only way for us to live.

Some of us MAY hear those words again. Most of us won't. But until that day- live each moment for what it is and treasure it.

I have a new dx. And I have been terrified of the other shoe dropping for the past five years. Now that it has I feel a sense of relief. I got cancer again but I am so much smarter now and I know I have the inner fortitude to do what I have to do. And I only know that because I have been through it already.

Never underestimate how powerful you all are. EE is a shining example of that.

We are stronger, smarter,better people from what he have endured and we can handle anything that comes our way-- just like the Edwards are.

May God bless and keep you always.
g

Friday, March 16, 2007

They are beautiful

Having a bilateral mastectomy is meant to be life altering. We are supposed to mourn the loss of our breasts. It is supposed to be devastating.

It isn't.

At least for me.

I was diagnosed with cancer the first time in September of 2001. I had many surgeries and radiation and my left breast had seen better days. I was proud of my cancer scar but not of all the other ones from the surgeries that had to be performed because of radiation and other biopsies. But my cancer scar was something like a purple heart and I earned it.

Then I was diagnosed in February of 2007 and this time it was in the other breast. This time I needed a bilateral mastectomy. Everything would be gone. I had a long wait from diagnosis to surgery and it was frightening to me. I looked at my right breast as poison because it was harboring three cancerous tumors.

Now, a week after my mastectomies and the removal of my lymph nodes I have discovered a few things:

The first is that no one should ever attempt to do this on just Tylenol for pain relief! But I have no choice since I cannot tolerate pain meds.

The second is that I had bigger tumors than they thought and the cancer spread to my lymph nodes. Four of them.

But there are no lymph nodes any more. My wonderful breast surgeon removed them all. And there is no cancerous breast tissue anymore. He also removed every last bit of it but saved my skin. So I have no cancer anymore, maybe microscopically, but that is what chemo is for... but as for breasts- they are gone- so no breast cancer.

And then there is the unveiling. Was it hard to look at the new me? Yes, it is hard to look at the drains and the bruises and the swelling. But what do I really see when I look beyond that?
I see two new breasts that are clean. No cancer. Nothing evil inside them waiting to kill me.
I think they are beautiful, more beautiful than my original set. And I am not even halfway done with reconstruction yet!

But here is the best part to me, the part that makes me feel proud and makes me feel like I am still me...my wonderful surgeons saved all my skin. So when I look down at my new breasts, in the exact same place it always was, is my scar from September, 2001. The badge of honor of that first cancer I beat. I am happy to see they kept it. For it is a part of me and always will be.

This new cancer is just that- a NEW CANCER. It is not a recurrance. I beat my first cancer. And I fully intend to beat this one. And I have a head start with two beautiful new breasts that are a clean slate ready to fight again. And I still have my purple heart and I am hoping that scar will scare the beast and remind it that it tried to take me once and failed and this time will be no different.

Monday, March 12, 2007

In The Mood

I survived the surgery. That was the easy part. Surviving the hospital was more of a challenge. I could not wait to get out of there and out of 'harm's way'. I do not know what has become of our wonderful hospital here, but it is not someplace I wish to ever return to again.

Recovering from a bilateral mastectomy and full axillary node dissection with nothing but Tylenol to take has been a challenge. But I am making it. Every day I feel a little better and I have learned that nothing is forever. Nothing can be as bad as that first night's pain and I have been improving.

I wanted to share with you something I saw last night that reminded me of the veteran in all of us. Those of us who have gone through breast cancer and every little thing that accompanies it, gets a second sense. We have a new awareness and we seem to instinctively know when to panic and when to go with the flow. Sometimes you just have to go with the flow because there is absolutely nothing you can do to change things.

I was watching an old movie with Jimmy Stewart last night called "The Glen Miller Story," you should see it for the music alone! But there was a scene that reminded me of what we, the veterans, go through.

Jimmy as Glen Miller joins the army in WWII and it is during the terrible bombings of England. He is playing "In the Mood" at an army hospital and the wounded soldiers and nurses are all outside surrounding him on a little terrace listening to the music that brings them back to the time when things were innocent, peaceful, and not forever changed. An air raid siren begins to go off and everyone knows they must take cover. But "In the Mood" still plays, all the soldiers look up to see the incoming bomber, so does Glen Miller, but he picks up his trombone instead. The plane drops its bomb not far from where they are and the music still plays. Everyone ducks but the music still plays. When the plane has passed the wounded all sit up again and start applauding madly because the music was still playing and it never stopped. It was a close one, but it missed!

That is how we have to live our lives now. We can see the incoming. We may have to duck and dodge a few bombs, but the important thing is to stay true to who we are. There is that part of us that cancer can never get to and our music will always keep playing. We just have to listen to it and enjoy every second of it. Sure, there will always be incoming scares and bullets and bombs, that is part of our lives now. But, just like those soldiers on that sunny day listening to "In the Mood," they savored the moment and refused to let anything ruin it. We just have to keep fighting and never let the music of our lives stop.

And in the end, we will also win the war we are waging as well.

Sunday, March 4, 2007

Accepting Help

I find that accepting help from people very hard for me. Maybe because I am single and have been taking care of myself for a long time. I got through my first cancer alone and came out stronger than I thought I ever was.

This time there are people who are not letting me get away with "Oh, I'm ok- I don't need anything!" They are INSISTING.

I think it is one part me being a curmudgeon and stubborn and the other part is that in my mind I have been anthropomorphizing cancer into a living thing- The Beast. I feel it stalked me and got me again. I was strong and determined the first time and beat it on my own... part of me believes that if I suddenly have all these people hovering around me The Beast will somehow think I am weaker this go around.

Maybe I should start looking at it as I have a bigger team fighting it with me - that way I might be able to stop frustrating my family and friends every time they ask me if there is anything they can do and I say no!

Tomorrow will be a full day and Tuesday I will be in the hospital and by Tuesday night I will be starting a fight with the hospital staff trying to get released as soon as possible....

Did I mention how much I HATE HOSPITALS??

Saturday, March 3, 2007

Count Down....

The past few weeks have been a seemingly never ending whirl of doctors, technicians, magnetic resonance imaging, PET, CT, and Bone scans. Among other things, they test ones ability to survive these tests.

In one day I was injected with three different radioactive isotopes, all to test a different body part. I wonder just how healthy is that? But we are past worrying about my "getting cancer" now.

I discovered two things:

The first was that my cancer has not spread any where. I have a funky thyroid that "needs looking at" but that can wait at the end of the line. My bones are clear, my organs are all in one piece and not harboring any terrorist cells and I have just been informed I have an "unremarkable brain." Funny he should think so, because I am coming up with some rather remarkable remarks to that declaration, but I am being good. You see, I have to be. I have cancer, for the second time. Being snippy doesn't help in the kharma department. So on top of everything else I have to be nice to people.

I have met with my new breast surgeon and new plastic surgeon and all systems are go and as of Tuesday evening I will no longer have the breasts I hoped would grow when I was a girl. I even did the Judi Blume exercises religiously---"we must we must we must increase our bust" whilst flapping my elbows like a deranged chicken. And then they DID grow, and made me so self conscious that my best friend and I walked with our arms tightly crossed around our chest so that no one would notice just how effective the chicken dance improves a girl's silhouette. This was my best friend all through my school girl days. She is gone now. The Beast took her about five years ago.

When we were girls, pouring over our Seventeen magazines in her hot attic, never did we imagine that the long haired, carefree lives those grown up girls were living would escape us entirely. Our futures were never to hold the promise of a baby or a husband - we got cancer instead.

My cancer is different this time. My first was ER/PR negative. Also known as "the bad one" because there is nothing to treat it with after chemo and it is extremely aggressive. No, this time it is ER/PR Positive. Which means I have a plethora of medications to choose from that can help me live longer.... everyone tells me I should be happy. All I feel is tired. I feel like FDR must have when he thought that he was gaining headway in the European theater only to be attacked by Japan. Now he has to always keep an eye on the continent, and also make up as he goes along this unknown enemy from the east.

I will write more about my upcoming surgery. I will detail it out. But now, I want to watch an old movie and pretend it is just like any other cozy night at home and not t-minus three days to bilateral mastectomy.....

Please know this: you don't ever have to tell a cancer patient how brave they are, and how strong they are. They are doing the best that they can. They can't change anything- and they must beat on. Are they any more special than people cancer free? Yes. Because their diagnosis has brought them to a place that has always been there but they never knew it. Everyone has greatness inside them, everyone is a super hero, they just don't realize it until they are forced to find that strength within them that has always been there.

Have faith and don't be afraid. The warrior in you is there- always- and that warrior will be called to service from time to time and you will see for yourself, your real strength and it will sustain you. No matter how bad it gets. In the immortal words of Stevie Wonder, "Ya Gots to do what you gots to do!"