Boobs On Ice™

Tell People About It

"If cancer has affected you personally, tell people about it. I’ve found the experience very fulfilling and comforting."

Link: Michigander in Mass. Todd Van Hoosear

I cant emphasize enough how important that is. Before I had invasive lobular breast cancer I had no idea that there could be another sign of breast cancer that did not involve a hard pea-like formation in my breast. 

But that was not the case with this disease, or other forms of breast cancer. It's not the case with other kinds of cancer either. The more I learn the more shocked I am. Yes, you can be sure I plan to write more about that soon!

In the article linked above, Todd Van Hoosear talks about the cousin he lost to cancer at a young age and encourages us to not only share what our experience has been whether personal or through someone close to us, but to also learn what we can about the disease in it's many incarnations.

Knowing the symptoms and more about the process of diagnosing, treating, and living with cancer, which affects so many of us in all it's forms is something you owe to yourself.

Bone Scan Land and Metastatic Cancer

The report from my bone scan made it's way to me last week by way of a casual conversation with my primary care doc who called to see how I was feeling. While we talked she said she'd heard from the oncologist I saw once and abandoned.

Turns out she'd also gotten my bone scan report. Of course I promptly pushed to get results and she's pretty straightforward with me. It's a good relationship and I appreciate her candor.

That's about the last of the good news for now.

Turns out that two area of bone are either deteriorating (some of that could be age) or the breast cancer has metastasized and started growing in one or both areas. That sounds like a bad news / worse news option. For some reason the bone has some areas significant enough to warrant concern.

It doesn't come as a shock so much as it's a blow that I hoped to avoid for awhile.  Invasive lobular breast cancer isn't known for staying put but I'd hoped I could finish reconstruction, try to get some help with the overwhelming exhaustion, and work with the Frozen Pea Fund on increasing knowledge about cancer and funding some worthwhile projects for a few years before tackling my next round of questionable news.

On the other hand it explains the pain in both chest and lower back that I've been blaming on chest wall expansion and a back injury from my teen years.

Unfortunately I'm stuck not knowing more until I can get an MRI. That can't happen until the chest wall expanders come out. They contain metal and that's a no-no for going through the MRI machine unless I want to chance them being magnetized right through my chest wall. No one wants blood on the MRI machine apparently.

So when my second surgery is done, expanders out, new boob built, I'll see how quickly I can finagle a spot in the MRI tube so we can perhaps find out what's happening in the bones.

My next appointment with Doctor Chang at George Washington is on Friday to discuss surgery he thought should be the first week in June after the current expansion has time to rest a bit. I'm going to try to jar him lose from that estimate and hope to move it up at least a week - maybe more. I'd like to be able to get going on diagnostics.

In the meantime I'm reading up on treatment for breast cancer that has moved to bones. My reading reinforces what my understanding that it does not then become bone cancer, but in fact remains cancerous breast cells but moved on to a new host and growing in bone, taking over where bone cells should be.

Sometimes we need a shove to get us - OK me at least - to move off Start to  Action.

So while I'm at it, getting a clear diagnosis is also time to think about stabilizing the bones in my lower back. Whether it's because of cancer or deterioration its a lot more painful to stand in the past couple of years. And something there has to get fixed no matter the cause.

The injury in my teens means that issue is something I've been dealing with for about forty years but the pain and immobility has been increasing in the past seven or eight and severely limiting in the last two or three.

I'm taking it pretty well. Not sure how the family is except in waiting mode. If you weren't along on Gone Nuclear - Full Body Bone Scan Day you can go back in time via this video, or check some of the links to learn more about various topics. being informed is not a bad thing.

• Metastatic Cancer: Q&A - National Cancer Institute
•  Merck Manual - Everything You Need To Know About Cancer -
  this has wonderful detail but is a very layman friendly guide

and if you're still reading after that, delve into interesting possibilities

• Scientists Investigate Treatments for Breast Cancer That Has Spread to the Bone
• Sloan-Kettering - Molecules Can Block Breast Cancer's Ability to Spread to Lungs and Bone

 

 

Might Validation Help the Exhausted?

Caring for every patient to the best of our abilities does not mean sweeping under the carpet the symptom listed most troublesome by the majority of cancer patients in this country.

There's something that over half of us say is worse than the pain of cancer and treatment and recovery.

And by that I mean that yes, most cancer patients rank fatigue as a symptom more bothersome than pain.

How stunning is that?

But do you ever hear about that? There's something to simply being heard; to not being discounted. In an online issue of a journal: the Oncologist devoted to cancer-related fatigue, dated 2003 (one article you can download below) you'll find articles that make a strong plea for acknowledgment that for cancer patients fatigue is real.

2003. That's Five years ago.

Oncologists knew - or should have known - that they should be telling us it was part of cancer to feel beyond tired, beyond fatigue, and that they don't really know all that much about why it happens or what to do about it.

It wasn't simply having someone acknowledge that fatigue is a part of the cancer experience that helped me accept that I wasn't nuts, but reading what Doctor Jane Poulson said of her own cancer exhaustion at least let me say "finally!"

And one writer in the journal article makes the case that It's worse if you feel isolated in fatigue:            

"What a comfort there would have been, however, in knowing that my exhaustion was being monitored, was being taken seriously....

"I was doing my utmost--a healthy diet, meditation, counseling, as much exercise as I could manage, and lots more besides--to cope with my fatigue. I needed to know that my exhaustion wasn’t the result of a want of imagination or some other lack in me or my attitude.....

"I didn't need to hear of 'sleep hygiene' with its pejorative implications. Nor did I need pills or potions to block out the experience. I knew I needed to feel it all fully, if I were to grow through it, to turn it to my advantage. I knew I had healing resources within myself if I could just push through the fatigue to access them. What I needed was to be held safely in that place." 

Maureen Gilbert. A Survivor's Journey: One Woman's Experience with Cancer-Related Fatigue The Oncologist, 2003

Unlike Maureen, I'm not fine with feeling it fully

I'm done with the "it's just something I'll have to go through" period of acceptance. Now I'm getting mad.  So to hell with feeling it fully. In fact I've had five months to feel it - and some years before that when we didn't know what the symptoms were from. I'm beyond ready to walk out the other side of exhaustion - or to be dragged there through some miracle of modern medicine.

Not only do I believe that it's necessary for this overwhelming symptom to be recognized and brought clearly into the light of day; it's just plain time to do something about it. Recognizing it and acknowledging it is certainly the first step.

If you're a patient:

Be assured that we understand you are beyond exhaustion, that it is real we encourage you to insist to your doctor that it's a serious part of your cancer experience. If the first one doesn't do something pro-active to try to help, see another doctor. No platitudes, no sympathy, and no telling you to tough it out is going to help you feel better.

If you're a friend or relative of someone with cancer 

Please know that their symptom is not something that a nap can simply take care of, whether their doctor gets that or not. Help them find a medical professional who is able to think outside the box. Let's face it; they are likely just too worn down to do this themselves.

In the end discounting cancer exhaustion makes it worse for the person experiencing it, for those around them who are baffled by it, and for the goal of reducing the impact of the disease in every way possible.

I'm not shutting up about until somebody hears these thousands of voices repeating the same words.

I just want to feel enough energy to get out of bed to make dinner without needing a nap after doing 5 minutes of it! I'm not demanding that I be able to walk from the car to the metro train to have drinks with friends. Or push my granddaughter on the swings. Or fly to a conference with my husband. I just want to get up and go to the grocery store for bread.

This lack of knowledge about cancer exhaustion is simply not acceptable in the United States in 2008.

Related reading:

• Download: Download cancerfatigue.pdf
• Doctor Poulson: We're Not Just Tired
• Cancer Fatigue: it Feels Like Death

 

Research Grants Study Tumors' Blood Supply & Protein

    Among the amazing people I've encountered on twitter is Ines Hegedus-Garcia, co-president of The Miami Shores Heidi Hewes Chapter of the Womans Cancer Association of The University of Miami.

@Ines has brought to my attention this small organization that does an outstanding job of involving the community and raising funds that go directly to cancer research.

Recently she sent a link to a list of the grants that they have made and although all worthwhile, one spoke to me because it talked in real terms about someone who wonders if answering one question could be the way to stop cancers like mine from growing,

Teresa Zimmers, PhD - Department of Surgery, Division of Surgical Oncology, Sylvester CCC has been awarded $50,000 towards her study focusing on the base fact that tumor growth and metastasis in many cancers depends upon the ability of the tumor to elicit a new blood supply.

Since a protein GDF-2 (or BMP-9) was absent in mice that have abnormalities in blood vessels development, this study will attempt to answer the question if administering this excess protein will inhibit tumor growth by restricting blood supply to established breast, Ovarian, and cervical cancer cells in lab mice

Sounds promising doesn't it? I'd love to be able to follow what happens. In the meantime kudos to Inez and the team that is doing the outstanding work funding this research.

Read more here

Why a Soy Health Shake Is Not My Cup of Tea

What can be good for some of us can be bad for others with any breast cancer that thrives on estrogen? 

SOY!   Who knew. .  and how did this happen??

The scoop is that phytoestrogens are estrogen hormone-like chemicals found in plants.

Guess what . .  we eat them in food we think is healthy! OK it may be healthy for MOST of us . .  but I've got an oh so special tumor that just LOVES feeding on estrogen.

Surprise!

Dietary estrogen (phytoestrogen) can be found in lots of food products including herbs and oils. BUT but the level varies depending on the source.

The information on the list of plants high in Phytoestrogens was a surprise.

What I do with this next after I get over being surprised? I thought it was only fair to share it with you and tell you to check to see if your cancer - or the cancer of your friend or loved one - is estrogen receptor positive so you can make them aware of this potential added risk

I do know I'll avoid soy and flax seed and the rest of the biggies on the list. But it won't be too big a sacrifice not to add Tofu Burgers to my diet anytime soon.

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For more about estrogen-receptors and cancer see my entry How do Hormones Fight Breast Cancer

More on Plant Estrogens at:

Phytoestrogen and Its Food Sources

Take A Bite Out Of Cancer: Pomegranates Do The Nom Nom Nom

I eat ok, and my daughter Kate encourages me to be better, which I have been. I don't eat fried food generally and I'm not a big refined flour person. So I wasn't too interested when I learned that there is research going on at the National Institutes of Health and elsewhere about nutrition and specific cancers.

Yawn. I've got my blueberries, healthy cereal, and I'm trying to increase my protein for energy but beyond that I'm not at all obsessed with food.

At least that's how I felt until I found out that they and other researchers are studying compounds that eats breast cancer cells. 

Yes, you heard it - nom nom nom - imagine them chomping away. Pomegranates contain elagic acid - a substance that actually eat breast cancer cells.

Just imagining that is good for us!

Research indicates that it may be though oil from seed that does most of the work, but others feel that one can get the effects from eating the fruit or drinking the juice.

I'm not a pomegranate person but I'm interested enough to read more and keep an open mind.

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Note: from cancer consultants:

Several other noteworthy examples of foods with phytochemicals proven to have anticancer properties include cranberries, avocados, and pomegranates...The phenol compounds alone block the action of tumor promoters, thus reducing the load on the immune system

Where and What is the Paradigm Shift Oncologists Expect in Understanding and Treating Cancer?

 

Dr. Larry Norton, Oncologist, Memorial Sloan Kettering Cancer Center / Dr. Lynn Schuchter, Oncologist, University of Pennsylvania Cancer Center / Carol Hochberg, SHARE / Dr. Dennis Slamon, Oncologist  Revlon  UCLA Womens' Cancer Research Program with interviewer Charlie Rose, discussing the paradigm shift in cancer discoveries and understanding that are occurring at that moment in labs around the world, and that they predicted would continue to bear significant fruit for the following 12 to 24 months - Interview from August 2007

Second half, interview about global communications with  Peter Chernin, President & Chief Operating Officer, News Corp.

 

 

How Do Hormones Fight Breast Cancer?

So far I've figured out that if I'm too busy spreading my energy all over the place I won't have enough for myself.  But this whole cancer thing sure doesn't end with a mastectomy as I was led to believe.

It's all an interconnected puzzle as far down the road as I can see. And now enters the H word . .  hormones.

When I think hormone therapy I think hot flashes and adding hormones via pill to replace the ones we lose during menopause.

But when being treated for breast cancer Hormone therapy doesn't actually involve using hormones themselves. In fact it should perhaps be called anti-hormone therapy because it uses drugs or surgery to block the hormones that are being used by cancer cells to stimulate their growth.

"estrogen and progesterone circulate in the bloodstream. They can attach to breast cancer cells and stimulate tumor growth. Estrogen is the major promoter of cell growth in hormone dependent breast cancer.

"The goal of hormone therapy is to deprive the cancer tissue of estrogen, .. halting or slowing of cancer cell growth.

"Unlike chemotherapy, hormone therapy, also called endocrine therapy, does not kill the cancer cell. (it) acts by either blocking estrogen from reaching cancer cells or reducing the production of estrogen. cancerfacts

Tamoxifen is a hormone blocker that a lot of us have heard of somehow. It's been used for years in both North America and Europe.  

For women before or after menopause it has been considered first-line therapy because it a.) blocks estrogen's action at the tumor but b.) acts like estrogen in other areas of the body.

For example, it has estrogen-like effects on the bone and supports bone health while blocking actual estrogen from reaching tumors or cancer cells that have metastisized.

Aromatase inhibitors on the other hand sound like an option for a shower. Not so I'm learning. They're used to block Estrogen's feeding of the tumor cells but in a different way than Tamoxifen. 

Memo that I didn't get earlier: After menopause adrenal glands take over producing Estrogen when the ovaries no longer do so. I had no clue.

But with aromatase inhibitors the idea now is to block the chemical aromatase,an estrogen precursor made by adrenal glands.

In other words the aromatase inhibitor stops Estrogen from running around my blood stream before estrogen ever actually BECOMES estrogen.

It used to be that AIs were only used only as first-line therapy for for advanced breast cancer in women who were past menopause. Then sometimes they were used in other patients as second-line therapy after tamoxifen stopped working & cancer cells started regrowing.

Now however that's changing - or at least some cancer docs feel that Aromatase inhibitors should be my first line of defense instead of tamoxifen.

But I find it interesting - and good news too - to learn that some patients have responded to multiple forms of endocrine treatment by using one, then a second, and then a third drug months or years later.

Today I'm betting on at least a good five year run with smart docs on the case. Tomorrow maybe I'll decide that's bunk but that's how I feel today. It could be a year - it could be eleven - it's all a roller coaster ride though. Maybe crossing my fingers could help.

Still, my real fear is the fatigue. if I'm too exhausted to deal with it all I won't do well.  How do we manage treatment and living and all the rest? That's another challenge that maybe even smart docs can't solve for me.

Doctor Poulson: We're Not Just Tired

"Fatigue is a devastating symptom that deserves the same attention as pain, nausea, ... and other well-recognized complications of a malignant illness. Oncologists must recognize its common presence and ask the right questions to elucidate its dimensions.^"

The late Dr. M. Jane Poulson, a physician from the Princess Margaret Hospital,
University of Toronto, wrote in 1998 about what many of us feel when we should be feeling better.

Or at least when we think we should be feeling better

" . . .For many months, I found myself quite content to simply sit doing nothing. I had neither the physical energy to move nor the mental energy to read or to contemplate.^"

Nobody tells us about the fatigue

Jane was only 46 years old when she had a visit with her surgeon 2 months after being treated  for inflammatory breast cancer. She told him that fatigue and lack of energy were overwhelming her.

"I am feeling as if I can hardly put one foot in front of the other at times." 

"I sure know how you feel," he said reassuringly. "I was on call last week and . . . I still haven’t caught up yet. "

The problem was, Jane was also a physician who had treated cancer patients for years. She knew about the routines, the hours, the fatigue of his life. 

She writes

"I wanted to shake my doctor by the collar of his lab coat and scream. 'You have no idea how I feel!' But I did not have the energy. I could not seem to find the words or language which would make the doctors, nurses, and other health care professionals understand just how tired I was."

Like in most cases, Jane's providers asked about pain and shortness of breath and looking back she remembered her own patients to whom she'd suggesting getting a little extra sleep. She reminded telling them that their bodies had recently been through a lot.

(Medical Professionals)"just didn’t get it" in spite of being told repeatedly that "the most overwhelming symptom for me was fatigue...  Despite the fact that the majority of my clinical practice was spent with oncology patients, I had not realized the enormity of the problem about which my patients complained"^.

Terminology

So what's wrong with this picture, as least what seems to make sense, is that the doctor hears "tired" or "fatigue" and mistakenly presumes they know what that means. But Jane writes

"The deadening fatigue which invades the very bones of cancer patients is totally unlike even the most profound fatigue of an otherwise well person, even a busy doctor."

"There is no "endorphin rush" with cancer fatigue. . . When healthy, I did not realize the energy required for activities of daily living, such as bathing, dressing, or sitting upright in a chair. ^"

Jane didn't have an answer that I've found

She died of Breast cancer in 2001, passing on to us the question of how exhausted cancer patients deal with our befuddlement with the fatigue and the symptoms that seem to take steps backwards.

And how do we convince friends and family and families that we're too exhausted to walk down the hall when our health care professionals don't have a clue?

• Does the fact that a tumor has lived off our adrenalin while lurking for years in our bodies have anything to do with this?
• Does the body's inflammatory response get out of whack when subjected to chemicals produced by the tumor?
• Do those reactions feed each other to make us dead tired, shuffling through life when we can stay awake and not in tears?

Call me crazy but all the healthy diet, regular sleeping habits, and creation of a restorative environment with fragrance, sound, and visual effects sound lovely, but idealized. Who's got the energy to hop over to my house and set up a lovely soothing household system like that for me? it sounds like what I really need is a mommy.

Read more about Jane Poulson via reprints of her articles: Not Just Tired -- Poulson 19  21 : 4180 -- Journal of Clinical Oncology.

Art As Therapy and Tribute

Beyond Exhaustion

The long ordeal is reflected around the eyes. It’s a look that’s more than tired; it’s a look that’s beyond exhaustion.

life size masks - clay, steel
©2000, John Magnan

Mary Magnan had ovarian cancer. To deal with his feelings about the ordeal that she was going through, her husband John created art.

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Mary Magnan lost her battle with cancer in 2006. She was 59. John's work lives on as a testament to her.

Bodyimage-bodyessence.com showcases his series of sculptures.

To learn more about Mary and John, his art, the Ovarian Cancer Coalition which sponsors exhibits of this series or to contact the artist follow this link