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Archive for September 10th, 2010

After breast cancer treatment, becoming obsessed with symptoms and worrying that every twinge or cough might be a sign of metastasized cancer is all too easy. A few women go to the other extreme and live in denial despite clear warnings from their body that something is wrong.

The bone, lungs, liver and central nervous system are the most common places for cancer to spread, and each has its own symptoms.

On lung imaging tests like an X-ray, CT or PET scan, metastasized breast cancer in the lungs will usually be more diffuse than a lung cancer tumor, which tends to start in one spot  and grow from there.  Because most breast cancer lung mets are spread out, surgery is not usually an effective treatment.  Chemotherapy is the most frequent treatment for lung mets.  If fluid builds up in the lungs, it may be drained as part of the treatment.

Liver.  Breast cancer metastasis appears first in the liver in about 10% of cases.  The symptoms vary widely and include changes in appetite and digestion, pain under the rib cage on the right side, and jaundice.  During a physical exam, the doctor may notice that the liver is swollen, and blood work may also give clues that the liver is not functioning properly.  Then the doctor will order imaging tests like a CT, ultrasound, or PET scan to find out whether the patient has liver mets or some other less dangerous problem.

If  the tests show just one or two spots, the doctor may try surgery, radiation or radiofrequency ablation to remove the cancer.  Radiofrequency ablation targets specific spots and uses heat to kill the cancer cells.  More often the spots are spread out.  Either way, the doctor will probably recommend chemo because even if only one tumor is showing, the underlying assumption is that more cancer cells are present but not yet visible.

Central Nervous System.  Because breast cancer mets to the central nervous system are hardest to treat, it is fortunate that they are also less common–occurring in 6-15% of cases.  Headaches, changes in vision, seizures, or weakness in one part of the body might be clues to brain or spinal cord mets.  The brain controls our whole body, so symptoms can vary widely depending on what part of the brain the tumor is putting pressure on.  A tension headache that lasts a day and goes away is nothing to worry about, but check with your doctor about any persistent changes.

The brain protects itself from toxic chemicals by something called the blood-brain barrier.  Unfortunately, this barrier does not work to keep cancer cells out, but can be very effective at preventing chemotherapy drugs and Herceptin from getting through.  This barrier makes  brain metastasis harder to treat.. 

If there is just one tumor, surgery may be an option, but as we have seen with other types of mets, frequently there may be several lesions.  Whole brain radiation may be effective at shrinking the tumors.  Another option is stereotactic radiosurgery, sometimes called gamma knife surgery.  This does not involve an actual scalpel, but uses concentrated radiation coming from several angles to treat tumors.  If the mets are causing brain swelling, steroids may help.  Sometimes anti-seizure medications are prescribed.

Research has shown that scans usually cannot catch metastases (mets) before the patient feels symptoms, so each woman needs to be alert and notify her doctor when something is wrong. Here are the most common types of mets, their symptoms, and current treatments.

Bone

The bones are the most frequent place to which breast cancer travels. Up to 70% of breast cancer patients with mets will have them in their bones. Bone pain is the most frequent indication of bone mets. Changes in blood work can also alert your doctor to the possibility. Because exercise, medications, and/or arthritis can also cause bone pain, see a doctor for any pain that lasts longer than a week or two, especially if the pain is constant. Bone mets pain does not “come and go” like a strain from exercise might, and it is not likely to be in the joints like arthritis pain. A bone scan is often the first test a doctor will order, but depending on the location and pattern of pain, the doctor may also use X-rays, MRI’s, and PET scans to diagnose bone mets.

Fortunately, bone mets respond better to treatment than some of the other forms of breast cancer metastasis. Bisphosphonates like pamidronate (Aredia) and zolendronic (Fosamax) help patients by strengthening the bone to make it harder for cancer cells to spread and by preventing the bone fractures that sometimes occur when cancer weakens the bones.

Radiation, chemo, targeted therapies like Herceptin, and/or hormonal treatments may also be used to treat bone mets. Although doctors do not typically use surgery to remove a bone mets lesion, they may need it to stabilize bones and prevent fractures. Long-term Stage IV survivors like Katherine Russell Rich often have bone mets.

Lung.

The lungs are the second most common place for breast cancer mets. In Dr. Susan Love’s Breast Book 4th edition, Dr. Love says that the lungs are the only place of metastasis for 21% of patients, and that of patients who eventually die of breast cancer, 60-70% will have it in their lungs. (Keep in mind that many people will have metastases to more than one location, so the percentages can add up to more than 100%.) Symptoms you should bring to your doctor’s attention include shortness of breath, chest pain, or a cough. If you just climbed a mountain or a cough is making the rounds in your community, don’t be alarmed. But if these symptoms have no logical explanation and don’t get better, see your doctor. Because the breast cancer cells are gradually displacing healthy lung cells, the symptoms may progress slowly.

Less common types.  Much less frequently, breast cancer can metastasize to the eye, bone marrow, or other parts of the body.

Deciding on treatment.  Although each type of metastasis has its preferred treatment, doctors generally want to use a systemic treatment when possible because so many women with mets in one organ will soon have them in a second or third organ.  If the tumor is ER or PR positive, hormonal treatments can be very effective.  Herceptin plus chemo may work well for Her2/neu positive tumors.  Chemo alone works well for some triple negative patients.  Because the cancer has already spread despite the original treatment, doctors will usually want to change up the medication from whatever was first used.

Typically Stage IV patients will go through several different drugs.  One will work for a while until the cancer develops resistance.  Then doctors try something else.  Each year doctors are learning more about how to treat metastatic breast cancer and coming up with new drugs.  Discussing the possibility of a clinical trial with your doctor is a good idea, especially if your cancer is not responding well to the more established drugs.

Although some women, especially those who have extensive metastases in several organs, may decide that they do not want further treatment, it makes sense to consult with doctors at a Comprehensive Cancer Center or research hospital to find out what can be done before reaching that decision.  If it turns out that the treatments interfere with quality of life or if they do not work, it Is much easier to stop treatment than to find out several months into a Stage IV diagnosis that there was a new medicine or procedure that might have added years of life.  Conversely, a woman should not continue in treatment to please her doctor or family if she is ready to focus on making the best of her remaining days. 

Life is full of surprises.  Sometimes the surprise is that a Stage IV cancer goes into remission.  Many doctors refuse to answer the “How long do I have?” question from patients because they have been surprised too many times.  One of my Stage IV friends was a smoker.  Her doctors didn’t tell her to quit because they didn’t think she would live long enough for it to matter.  She was an active volunteer in the breast cancer community in her city for five more years until her death.

Today there is hope for Stage IV patients.  We have better services through Hospice programs for those who are at the end of their earthly life.  Researchers are finding treatments that are more effective and less toxic.  More hospitals and treatment centers offer support groups and complementary treatments like Reiki, massage, and acupuncture to improve quality of life and control pain.  Science will use what it learns from today’s Stage IV patients to unlock the secrets of cancer that will someday give our sons and daughters a cancer-free world. 

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Where do you find the right words to say when a friend tells you they have Breast Cancer?

“Oh, my mum had breast cancer. She died. What a horrible experience!”

“I had a friend who did chemo, and it was the worst thing that ever happened to her…”

And there you have it, folks, two of the WORST things you can say to a woman who’s just been diagnosed with breast cancer.

Feeling a little uncertain about how to respond when your best friend, your aunt, or a colleague at work tells you she’s been diagnosed with breast cancer? OK, hopefully you won’t blurt out variations on either of the two statements above. But sometimes things come out of your mouth before you can even think…

What do you say when you’re face to face with a newly diagnosed survivor – and what do you absolutely, positively leave unsaid? These helpful hints may help you avoid one of those unhappy “WHY did I say that?!” situations.

What NOT to say:

1) “Don’t worry.” Followed by “I’ve known lots of women who’ve survived breast cancer,” or “It’s probably not as bad as they say,” or “You’re going to be just fine,” or…

Although all of the above are true, saying “Don’t worry” to a woman just diagnosed with breast cancer is like telling someone whose home has just been flattened in a hurricane.

The emotional impact of a cancer diagnosis is so great that it takes weeks to gradually internalize it. In the meantime, your friend does nothing but worry – about everything. Don’t make her feel bad by asking her to skip this natural first step on the way back to health.

2) “What can I do for you?”

Any woman diagnosed with breast cancer is immediately presented with an overwhelming number of potentially life-and-death decisions. Lumpectomy or mastectomy? Chemo – yes or no? Reconstruction? Your offer to help, though wonderfully generous, feels to her like one more decision to be made.

Rather than ask her what you can do, offer to make dinner next Wednesday night, and bring takeout pizza to the children on Friday. Or let her know you’ll take care of her children if any of her doctors’ appointments fall at awkward times. Tell her you’d be glad to come weed her garden Saturday. Trust me, it’s much easier for her to say, “Oh, I’d LOVE that!” (Or “No thanks”) than it is to try to think of what needs to be done.

3) “How do you think you’ll feel about losing a breast?”

As good a friend as you are, wait for her to bring up the emotional side of breast surgery. She may still be trying to decide between lumpectomy and mastectomy. So instead, ask her, “Have you made a decision about surgery?”

If she says she can’t decide, ask if she’d like you to listen to the pros and cons and help her make up her mind. The emotional side of mastectomy may very well come up during this discussion.

Heres a good one. Michael Douglas on a TV show in the States a few days ago….was told ‘ But you look so well, you do not look like you have throat cancer’

What exactly is someone supposed to look like when they have cancer?  Normal ,we look normal unless of course we are in the final stages, but Michael has only started treatment and although a little on the thin side (he can now only swallow liquids) Michael looks like Michael. Many times I have been told you look so well you would never think you had cancer. So here are a few more No, nos.

4) “I wonder why you got cancer? You seem so healthy.”

Yeah, she’s probably wondering the exact same thing! And worrying that she did something wrong along the way… Was it waiting too long to have her first child? The wild life she led in school? Birth control pills?

About 85% of us diagnosed with breast cancer have no known risk factors. It does absolutely no good trying to figure out why you drew the short straw. So don’t ask a question that encourages her to think along these lines.

5) “Are you going to quit your job, or…?”

A breast cancer diagnosis is a major life crisis. But for many women, so is quitting a job. Unless a woman’s very close to retirement, or in a dead-end career she dislikes, it’s unlikely she’s even considering quitting. And it’s VERY likely she’s afraid she won’t be able to do her job; afraid she’ll be fired or let go.

The fact that you’re even asking may ratchet up her worries, especially if you’re a work colleague. “Does she know something I don’t know? Am I going to get the sack ?” Don’t you be the one to bring up her work schedule; let her do it.

So, enough with the negatives. What’s the BEST thing to say to your friend or family member who’s just been diagnosed with breast cancer?

1) “Say anything you like to me. I won’t be shocked, offended, or hold it against you – ever.”

As women, we always worry about how our actions and words will affect others. We want to be a good friend: strong, generous, even-keeled, empathetic.

But as newly diagnosed survivors, we find ourselves feeling anything but calm. We want to kick and scream, cry, curse, and lash out at… something. Or someone It’s very hard to keep those emotions in check 24/7; nor should we. Offloading negative emotions is a healing process.

So telling your friend to “Go ahead, lay it all on me” is a gift. She may never break down in front of you, but if she does – she knows you won’t take it to heart, and you’ll be there for her afterwards.

2) “How about dinner and a movie?”

Newly diagnosed survivors want nothing more than a return to normalcy. A couple of hours of distraction – laughs and gossip with a girlfriend – are probably just what the doctor ordered.

3) “Would you like me to come to any of your appointments with you? I’m really good at listening and taking notes.”

The initial round of doctors’ and surgeon’s appointments is fast-paced and incredibly confusing. All of a sudden, your friend has been thrust into a situation where she doesn’t understand the vocabulary, is still trying to understand she has cancer, and feels woefully unprepared to make the decisions being presented to her.

Having a friend sitting next to you as the doctor fast-forwards through the next 6 months of your life is incredibly helpful. Take notes, or ask the doctor if s/he minds being tape-recorded. Ask clarifying questions; if you, the calm, collected one, don’t understand something, it’s doubtful your terrified friend does. Later, you can go over the notes together, and demystify her treatment.

5) “Want to do some research? I know of a great breast cancer site…”

Many women these days immediately turn to the Internet when seeking information. The moment I returned home I switched on the Internet to find out more and what to expect of the future….did I even have a future?

Advanced Grade IV, was not only bad,  it was very bad, at this time I had been told the cancer had also spread to my spine. I spoke with a Professor I knew in England and he said to me IF it has reached your bones it is very advanced.
Most survivors desperately want to connect with other survivors. Breast cancer is a sisterhood; we’re a long chain of women, some leading, some following, all holding hands as we get through this together.  I joined Blog For A Cure ,a group of people who are going through all stages and differnt types of Cancer. I find great comfort talking with these people and have woken in the middle of the night in a cold sweat needing someone to help me through the night…there is ALWAYS someone there on the end of the line to help you through those dark moments.
 This won’t apply to everyone, but if your friend is religious or spiritual, touch on that. Tell her you’ll pray for her; you’re sending her good karma, or that you’ll do some Reiki with her. Treat her to a therapeutic massage. Join her on the spiritual part of her cancer journey, if you’re able. Healing the soul is just as important as healing the body.

Finally, if none of the words above seem to fit your relationship (or the circumstances), a hug is always welcome. Or a shoulder squeeze. Even a simple pat on the arm. The human touch – literally – is wonderfully healing.

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PET SCANS: Are Crucial

There are some types of Breast Cancer that do not show up on mammograms, for instance mine.

For me I have to have Nuclear Pet Scans and even this did NOT show up the return of my cancer.

If you feel there is something wrong even if your Scan shows up clear go back to your Oncologist and ask him to check your markers in the area where you feel pain or discomfort.

I knew the cancer was back and the doctors were telling me No, no, no…I insisted until they checked my counts and sure enough it was back.

You and you alone know your body better than anyone and you must make the doctors listen to you. Three months was wasted taking drugs for a urine infection I did not have, it was cancer growing behind my bladder. BREAST CANCER.

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