Boobs On Ice™

What's Making Waves in Our Brains?

"The cell phone is a remarkable invention and a breakthrough of great social importance. Our society will no longer do without cell phones. None of the members on the expert committee has stopped or intends to stop using cell telephones. This includes Dr. David Servan-Schreiber, a 16 year survivor of brain cancer. However, we, the users, must all take precautionary measures in view of recent scientific data on the biological effects of cell phone use, especially those who already have cancer."

Thus doctors at the University of Pittsburgh Cancer Institute, based on advice from an international panel, are urging not panic, but caution. But the number of doctors in their advisory group, and their cautious, workmanlike approach have made an impression on me.

Now with everything from estrogen, to food additives, to where my father worked, to what was in the water when I was five, to the air we breathe and what's in our mascara suspect as something that may have caused my cancer in the first place or make it more likely to pop up again, this is all a little unsettling.

And while I'm not unduly concerned, I am now bothered that my 10 year old granddaughter owns a cell phone - and I'm hoping she'll use it primarily for texting rather than talking.

Perhaps what gave me greatest pause recently were not the words in the Pittsburgh cautionary bulletin - but the image shown. 

"1) Electromagnetic fields from cell phones are estimated to penetrate the brain especially in children. (Figure 1.) . .  Modeling in the diagram below estimate that young children are more susceptible to electromagnetic fields due to smaller sized brains and softer brain tissue."

Figure 1. Estimation of the penetration of electromagnetic radiation from a cell phone based on age (Frequency GSM 900 Mhz) (On the right, a scale showing the Specific Absorption Rate at different depths, in W/kg) [1]

That's downright disturbing. While the doctors writing the report feel that "Electromagnetic fields generated by cell phones should be considered a potential human health risk" they also caution that not enough time has passed to really have data that is conclusive.

And perhaps the most important observation is that although studies have NOT proven that cell phones are safe NOR show that they present a hazard.

So in the meantime, while a definitive answer is in the works - and who can predict when all experts will agree (I predict: never) - why not do what this panel advises and be aware that:

  "..growing evidence indicates that we should reduce exposures, while research continues on this important question.

Read more about the recommendations from the Center for Environmental Oncology and their Environmental Health information. And let's be safe out there. At least as safe as we can figure out how to be.

Less Boobage Awaits

It's 3:30 AM and I leave at 9AM for the hospital. It could be that I'm a little nervous.

Most everyone knows that I'm  going in for surgery and that it will complete this phase of the rebuilding of my breast after it was removed because of a sudden cancer diagnosis in December 2007 but I haven't said much beyond that.

The process of having a balloon surgically inserted inside the muscle wall to expand it, then gradually injected with saline every few weeks was a laborious one but it was the safest for me given my health history. It involved frequent drives into DC for visits to the office of my surgeon and getting to know some really nice staff at George Washington Hospital faculty medical building. I'll take photos with them next time I see them since It's been a memorable journey and you should meet them.

So tomorrow around noon I get wheeled in to have my chest muscle expander removed and Doctor Chang will then clean out the  capsule and a semi-permanent implant will be added to that pocket created within the chest wall. My other breast will be reduced in size to match the new implant. (I won't even start on the story about nipples.)

Looking for a silver lining I look forward to having 40 year old breasts instead of 60 year old breasts. I'd like to hope for 20 but that's too much to ask in the best case. I can tease Doctor Chang that  I'll be expecting perky but that's as far as that goes.

Since he will be leaving George Washington University for New York at the end of July I am very glad that I will be able to complete this process with the surgeon, Raymond Chang, in whom I have faith and with whom I have developed a good relationship since we first met in December.

His advice has been caring and tailored to my situation. I've never felt pressure to do things his way and I appreciate that immensely.  He's handled my moments of doubt with calm and reassurance, always focusing on what my feelings and needs were.

And I did have doubts. Vacillating between complete removal of the second breast for prophylactic reasons to lessen the chance of recurrence, having no reconstruction at all, opting for a different type implant; I was all over the place. There were many moments of doubt. Well - being truthful, there were days and weeks of doubt.

But Doctor Chang was always interested in my feelings and even the rest of my cancer treatment including what my reactions to oncologists and other doctors were. And when I was at my most vulnerable he was at his most understanding and helpful, showing a genuine effort to not be the cold surgeon but to emphasize that all women are different, have different needs and reactions; he encouraged me to be patient and understanding with myself.

I'd be lying if I said I wasn't apprehensive. I've not had surgery at George Washington before and don't know the system, the rooms, the process. And this time I'll have drains on both breasts - double the pain. I don't know if my husband can spend the night like he did at Sibley and Reston Hospitals. This time I'll have two sore arms and two sides of my chest painful for the week or two after surgery. Dealing with fatigue has been a problem already and I can't imagine that this will make it better. And pain control has been an ongoing issue.

I try not to think that they could possibly find another cancer when they're in there doing their thing. But it does pop up into my mind. More than that I know that another surgery means being out of commission even further and makes more work for my number three daughter who remains my caretaker, nutritionist, sounding board, and who's been forced into the role of private-duty nurse and go-fer.

Then there's the issue of a whole new anatomy to get used to. If there is a change or thickening in the newly shaped breast tissue will I be able to identify it? I don't know.

I anticipate coming home Thursday. But I'll probably do a lot of sleeping even through the weekend and hope I can get daughter #2 to come over and relieve little sister a couple of times during that time. The good news is that this is the last surgery for awhile, knock on wood, and the rest of the family should be able to get back to a relatively normal life soon.

Meanwhile I try to figure out what I'm doing with hormone therapy - and where. . .  and if I think that lab results  from bone scan, CT scan and x-rays interpreted as "no clear evidence of cancer" should merit another look-see by someone more curious and thorough.

What can you, my readers and friends do? Don't hesitate to offer to kidnap me for dinner or lunch, coffee or drinks in a week or so. Yes a meal delivered - no soy - would be grand or a gift certificate for a restaurant that delivers or does pickup might just be the right thing to have. Other options are books on tape. Or I  could just go stir crazy and need someone to spring me, get me out of the house. Thinking about it, it's more likely that Kate aka twitterer Badwolf will need to be sprung on her own - to a movie or a bar just to talk and  to vent like anyone who'd been cooped up with me for weeks would need to.

I'm just looking forward. Only a few more days wearing bras is something to look forward to.

The Inheritance of Regina Brett

 

Regina Brett talks about breast cancer

 

Would you want to know?

Would you want to know if you carried a gene for a potentially fatal disease?

If you found out you had that gene, would you want your child to know if she carried it, too?

It's a terrible legacy to pass on. A mutation in every single cell
of your body. I have one. It's called BRCA1. It's one of the breast
cancer genes.

There are so many traits I want to pass on to my daughter. A gene for a fatal disease isn't one of them.

Ten years ago, I wrote four columns after being diagnosed with
breast cancer. Today I present four columns about what my daughter
inherited from me. These were far more difficult to write.

Our story begins with a test.

• Part 1: The test
• Part 2: The choice
• Part 3: The surgery
• Part 4: The victory
• Epilogue: The final word Has your family been touched by breast cancer? Share your stories in the comments area below.

The Inheritance - Regina Brett, Plain Dealer Columnist

DCA the Tiny Cancer Killer

“If there were a magic bullet, ... it might be something like  DCA…”  Newsweek, January 23, 2007   

DCA is a tiny molecule, odorless, colorless, inexpensive, relatively non-toxic and researchers including Evangelos Michelakis MD at the University of Alberta think it may soon become an effective treatment for many forms of cancer.

Michelakis, a professor at Alberta has shown that dichloroacetate (DCA) causes regression in several cancers, including lung, breast, and brain tumors.

Crossing borders

Alberta's program fosters research that crosses the boundaries of traditional disciplines and brings scientific research to the clinical treatment of cancer. 

Which brings us back to DCA, which has been used for decades to treat children with metabolism malfunction due to mitochondrial diseases.

As a kind of aside, mitochondria, the energy producing units in cells, have been connected with cancer since the 1930s, when researchers first noticed that these organelles dysfunction when cancer is present.

BUT until recently, it was believed that cancer-affected mitochondria are permanently damaged because of, not the cause of, the cancer.  Michelakis wondered about this and began testing DCA,which activates a critical enzyme as a way to "revive" cancer-affected mitochondria.

The results astounded him

Michelakis and his colleagues found that DCA caused the mitochondrias to start functioning again in many cancers, showing that the way they worked was suppressed by the cancer but not permanently damaged by it.

More importantly, they found that there was a drastic cut in tumor growth both in test tubes and in animals. And DCA, unlike most current chemotherapies, did not have any effects on normal, non-cancerous tissues.

Cancer Crystal Ball Could Help My Family and Yours

The Globe and Mail Saturday reported about a Cancer test that can be a genetic crystal ball for Jewish women.

"For the first time in Canada, Jewish women will be offered the chance to alter their genetic destiny by taking a test - at no cost to them - that will determine whether they are at high risk of developing breast and ovarian cancers.

By screening for three inherited breast cancer gene mutations common to those of Ashkenazi Jewish ancestry, Women's College Research Institute scientists have an ambitious goal: to prevent the dreaded disease before it strikes."

This development comes after decades of worry - often followed by diagnoses of ovarian or breast cancer - and too often death - for women around the world.

Some surmised that they were at risk for cancer because their mothers of close family were struck by early, swift growing, sometimes quick killing cancers. Nearly none knew exactly what their risks were.

And until Canada took this groundbreaking step, women have gone through years of jumping through hoops to get anyone to hear their questions or fears; much less adequately answer them.

This strikes way too close to home

I've been discussing this genetic time bomb with an online friend who had a series of  prophylactic surgeries because of her genetic status combined with some precursor symptoms that did not mean cancer but meant: probably cancer down the road.

And all the time I've been thinking and wondering - will we ever know the possibilities that might await my own family? Because of the kind of cancer I have my surgeon recommended that my daughters have ultrasound breast studies and not rely on mammograms which did not pick up my cancer even when it was a 5cm entanglement of cells running through my breast.

And remember my elder granddaughter who will soon be ten? The "basket case" video granddaughter has a double risk. Both of her grandmothers have had breast cancer. On her father's side her grandparents are of Eastern European Jewish descent which may mean the BRCA gene. Of course my concern is that she will never know.

Life's journey has never been easy and there are no guarantees.But perhaps this move in Canada will make a difference for some.

I'll be following up with more links and resources as I learn, and perhaps help others learn as well, about genetic links to breast cancer and how women deal with the risks, the uncertainties and the realities.

A healthy woman’s battle with breast cancer

By Eden Spodek

After months of agonizing over whether or not to make my story public, I’ve decided to come out as a woman who has decided to share something very private. Especially since so much of my life has become public over the past 20 months with the launch of my blog. This story is a very painful one and one I’ve only shared with close friends. Between 2002 and 2005, I had a double mastectomy, reconstruction and a complete hysterectomy. Here is my story…

Saturday, May 24, 2008 marked the date of my eldest son’s Bar Mitzvah. There was a time when I wondered whether or not I’d live to see the day. For me, it was a day for celebration on two levels.

Eight years ago I learned I had a genetic mutation known as BRCA1. According to current statistics, I had close to a 70% chance of developing breast cancer and a 40 % of developing ovarian cancer by age 70. The odds of it happening sooner than later were also staggering. It was the beginning of a difficult journey that I believe helped prolong my life. Otherwise, I feared I wouldn’t have been around to watch my children grow up.

Why did I get tested in the first place?

My mother was diagnosed with early-onset breast cancer at the age of 32 and died when she was 37 (I was 15). There was also a history of breast and ovarian cancer in her father’s family. I am also an Ashkenazi Jew (a high-risk group with 1 in 44 women having a BRCA gene.) Those two factors made me eligible to for genetic testing when the criteria was more stringent than it is today. (For the first time in Canada, Jewish women regardless of family history will be offered the genetic test for free*.)

I also had some early warning signs, excellent physicians and started having mammograms when I was 28. When the first familial breast cancer practice opened up in Toronto while I was in my early 30s, my gynecologist urged me to meet with Dr. Paul Goss, a medical oncologist specializing in familial breast cancer research. I think I had just given birth to my eldest son. I was offered genetic testing early on but knew I wanted another child and didn’t want the results to get in the way of my decision. I waited almost two years after my second son was born.

I suspected I already knew what the results would be and I wasn’t ready for them to be confirmed. Once they were and I was told I had the BRCA1 gene, I wasn’t surprised but I’d by lying if I said I wasn’t upset. I was upset enough to gain more weight than I had gained during pregnancy. (I lost 30 pounds six months later and kept if off until I struggled with my body image during the breast reconstruction process.) Through the familial breast cancer clinic, genetic counselors and social workers were at my disposal. I spent a lot of time studying the genetics issues. I had lots of decisions to make:
• do nothing,
• enter a more intense screening program,
• take Tamoxifin for five years which at that time was more experimental, or
• have prophylactic surgery – an option I had sworn against since I’d heard of high-risk women opting for it years earlier.

After doing some heavy soul-searching and scads of research, I chose more screening including regular mammograms and MRIs as part of a study. I also tried Tamoxifin. After 3 weeks and feeling like I’d aged 20 years, I nixed the experimental drugs. I hated the MRIs yet I refused to take the sedatives they offered during the procedure. I also hated waiting several weeks for results – results that were often unclear or false positives – that often required repeating. I also had an area described as “ropey” on the left side of my left breast. Doctors performing clinical breast exams were always concerned. I kept having doubts about the efficacy of the screening. I also had spots called calcifications – another warning sign of things to come.

Eventually, prophylactic surgery seemed like a more viable option. Dr. Goss was known for being aggressive when it came to recommending prophylactic surgery as prevention to otherwise healthy women who may or may not develop breast cancer. And, with early screening and detection the odds of survival were increasing. Except for one thing, he thought women with BRCA 1 or 2 seemed to get more aggressive cancers and even early detection wasn’t always enough.

So, he sent me on a journey.

I spoke to every leading breast cancer specialist in southern Ontario. Each one had a different area of interest and a different perspective. Male doctors also seemed more in favour of surgical options than their female counterparts. I also spoke to specialists in Eastern Canada and Chicago.

While on my journey, new information emerged about the relationship of ovaries and breast cancer. Specifically, removing them and/or tying fallopian tubes would not only decrease the chances of ovarian cancer but was also found to decrease the risk of estrogen-receptive breast cancers. My childbearing years were over and the thought of removing invisible organs instead of my breasts seemed like an easier option.  I started asking my gynecologist questions like “If I remove one ovary and tie the other tube, what would my risk reduction be?” She referred me to one of the two top gynecological oncologists in the city.

Timing is everything.

A mere two weeks before my appointment, a well-supported study was released comparing two groups of women with BRCA1 who opted for prophylactic surgery. There was a staggering difference in the occurrence of ovarian cancer for those women who removed just their ovaries vs. those who removed their ovaries and had a hysterectomy. The surgeon made a convincing case for the latter. I left the office in tears and was told I should have the surgery within two years because I was two years away from the age when the cases of ovarian cancer in BRCA women increased exponentially. Ovarian cancer is very difficult to detect, particularly in the early stages and difficult to cure.

After much research, anxiety and introspection, I decided to start what would later become a three-year surgical misadventure, with an oophorectomy and hysterectomy. I had just turned 40, and a young 40 at that. The thought of premature aging and losing my breasts was daunting and scared the you-know-what out of me but I was married with two young children and the though of them living without me was far more frightening. I knew what it was like to grow up without my mother and couldn’t bare the thought of my kids growing up without me.

Besides with laproscopic surgery, the procedure was supposed to be quick and the recovery relatively easy. Unfortunately, things don’t always go as planned. I started bleeding uncontrollably. They had to cut me open after all. I almost bled out on the table. When I woke up, I was left with huge stretch marks (I never got any during pregnancy so they were quite a shock), anemia, chronic lower back pain and frequent bladder infections for the next six months. A 3-week recovery period turned into a three month absence from work.

Back to the boobs…

I continued with the MRIs, mammograms and clinical exams. After getting the all clear several times, things changed. I was diagnosed with a fibroid adenoma. I had a small benign spot on my right breast that was indicative of a future malignancy. I had two needle biopsies – the first one inconclusive, the second one seemed all clear. Regardless, I couldn’t stand feeling like a sitting target. I was ready to tackle the next round and have a bilateral mastectomy.

Next I had to interview and be interviewed by the surgical team. They needed to make sure I was comfortable with my decision and had done my research. It didn’t take much to convince them. The plan was for immediate reconstruction with expanders for six months to be replaced with cohesive gel implants.

Unfortunately, things didn’t go as planned this time either. My incisions didn’t heal properly. The expanders had to be removed two weeks later. I went from a double DD cup to being flat as a board for eight weeks. I wanted to end up a B or small C.  Instead I wore prosthetics for several months until I was healed enough to have the expanders reinserted. It was almost two years before my breast reconstruction was complete. For most women it takes between six months and one year to complete the process. The good news was they didn’t find any malignancies during the post-op biopsy of my breast tissue.

Along the way I had a supportive husband and family, joined a support group and spent a lot of time as part of an online community for high-risk women called FORCE as “ElisaS” (a hybrid of my real name). I met several other women in real-life and online who were dealing with similar issues. Out of the 10 women in my real-life support group, 5 of us have remained close over the years. Of the 5 of us, only one woman hasn’t had any preventative surgery. She was recently diagnosed with breast cancer. Fortunately, it was caught early but it may have already spread to her lymph nodes. She’s awaiting her prognosis.

Why didn’t I do this sooner?

I was concerned about my privacy and that of my family. I needed to wait until they were comfortable with my decision to go public. I believe there is a stigma attached to women with a BRCA gene mutation who choose surgical prevention. We’re caught between a bit of a rock and a hard place because we’re treated sort of like we have breast cancer and sort of like we don’t. We’re still pioneers as far as the medical community is concerned too. I’ve experienced adversity as a result of my prevention decisions and I am concerned about whether or not people will treat me differently as a result. It’s been weighing on me for a long time.

Inspiration

After sharing my experience with Susan Reynolds for months, Katie Delahaye Paine at mesh last week, and conversing with Mathew Ingram on twitter about transparency in the context of the story that broke on the front page of Canada’s national newspaper, The Globe and Mail (also his employer) last weekend – coincidentally, on the same day as my eldest son’s Bar Mitzvah – I knew it was time to tell my story.

I decided the benefits of sharing my experience and possibly helping other women outweighed the costs. I hope I’m right.

...
*NB Dr. Steven Narod, holds the Canada Research Chair in breast cancer and director of the familial breast cancer unit at Women’s College Hospital in Toronto. He is instrumental in the program being offered to test Jewish women for the BRCA gene mutations in Canada. I consulted with him and genetic counselors on his team during my journey.

I Wish We Would Have Known

What to Expect of Cancer

• Supportive Care - fatigue - DanaFarber 

• Supportive Care - Pain - DanaFarber

• Fever, Sweats, Hot Flashes in Cancer patients

• Breast Cancer Treatment (PDQ®)

  from a German website, attributed to the National Cancer Iinstitute in the US. Clear guidelines & descriptions of stages, what might be done, etc.

  

Spread of Cancer / Metastasis

• Breast Cancer - resources - info - more about spread to bone - Merck Manual   Radiation therapy is usually the most effective treatment for cancer that has spread to bone, sometimes keeping it in check for years

• Metastatic Cancer: Q&A - National Cancer Institute

• NCI National Organizations Database
  

    Numerous organizations and facilities provide services to people with cancer and our database
  contains many, but not all of them.

• CancerCare: Update on Metastatic Breast Cancer
  

    3 cancer docs discuss updates about breast cancer that has metastasized - spread to other parts of the body

Cancer Issues: Symptoms Signs and Side Effects

• CancerCare : Difficult Side Effects of Breast Cancer Treatment: Memory Changes, Lymphedema & Neuropathy
  

    60 minute podcast with answers from cancer specialists in these specific areas

• UCLA > News: Debilitating Cancer Fatigue
    A survey of cancer patients several years ago reported that 32% reported debilitating tiredness every day, 21% on most  days and 14% at least once a week.
  
  Twelve percent of the patients sampled in the survey actually said that they would rather
  be dead than have the severe fatigue that they were experiencing.

And these things may be of some help

• Yes, most cancer patients rank fatigue more bothersome than pain.  A download PDF is at this link

• Cancer Fatigue Treated w/Modafinil: Presented at ASCO

   
• Turmeric - Alzheimer’s and Cancer Beater
•  

  Lotsa Helping Hands  

    It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion.

 

Prognosis Chart - Treatment Options

I've had a lot of questions lately about treatment so here's a rundown of the options and what's happened so far:

We did not know the size of the tumor on diagnosis, though I saw it on the ultrasound during the diagnosis and during multiple needle biopsies the same day.

The mass never did show up on mammogram and my diagnostic radiologist says he does not think it would have been detected if I had had a mammogram before I could point out what was happening with nipple retraction.

We did know however:

This was invasive lobular breast cancer which does not just form a cluster of cells and stay put. It had not just grown but had clearly begun to invade cells beyond the spot where it started. I had a mastectomy on December 21, 2007 during which all breast tissue was removed on one side. Reconstruction was begun and will be completed in a second surgery on June 18, 2008.

In February 2008 I was cleared by the surgeon to see an oncologist, which I did. What she showed me was this chart. (click on image to get full size)

The top line of the graph shows the typical prognosis for a woman my age, in my current health condition, with my cancer as it was staged at the time of surgery, of the same size and type and with positive estrogen receptors as mine had, and after a mastectomy as I had.

• The green area (good) shows that 42 of the women would be alive AND cancer free in 10 years.
• The red area (bad) shows that 39 of the women would be alive but would have had a recurrence of cancer.
• The blue area shows that 19 of the 100 women would be dead within the ten year period, with the cause something other than cancer (heart attack, stroke, being run over by a bus, falling down the stairs, who knows)

So far so bad.

The next bar shows an additional yellow area illustrating that taking anti-estrogen medication to block the hormones that cause my kind of cancer to grow would increase the number of women alive and without cancer by 17.

That sounds like a good number to me for a treatment that is not invasive and fairly low risk for other problems. Not without risk but reasonable.

The next two bars show the same yellow areas,

• One showing 11 women would have their chances improved by chemotherapy alone with no anti-hormonal medication.

• The last showing that adding a chemotherapy regimen to the anti-hormonal medication would add 7 cancer-free women to the 17 we get by using anti-hormone therapy alone.

My immediate thought - in my shock at the areas of red added to the area of blue (women dead or with cancer again detected) was that I'd do chemotherapy and anti-estrogen therapy.

Some Research Later

Knee-jerk emotional reactions based on shock aside I feel that the hormone therapy alone would give me the best chance of continuing to stay alive yet without decreasing my quality of life in too large a way.

The caveat is this: the analysis was done based on lab exam of the tumor and before the full body nuclear bone scan showed suspicious areas in both spine and thoracic (chest) bones.

So I do need to have more tests done and the bone situation analyzed. That may change the picture.

Right now we're on hold until a multidisciplinary team can be located where I can be assessed and treated as a whole person, not just as a boob without a brain.

The Role of Emotional Support in Cancer Therapy

"health care providers acknowledge the role of emotional support in the treatment of pediatric cancer, and go out of their way to meet the needs of those patients.

Emotional support is presumably just as important in the treatment of adults, but there is much less of a focus on it from health care providers.

The hospital where I work is arguably the best in the country, having a strong integrative medicine program in addition to a commitment to scientific research. I know the patients here are having their emotional needs met to a greater degree than anywhere else in the country.

What I am concerned about it the lack of emphasis this aspect of treatment is getting elsewhere."

Link: Dr. Miggy 5.0

 

Learn more about providing for patient needs:

• How to Help A Friend With Cancer - Seattle Cancer Care Alliance
• relief for a neglected area of cancer care: the emotional turmoil caused by the diagnosis, symptoms and treatment of cancer
• Mundane household chores tackled by Cacer helpers
• Cancer Coaches to help patients navigate a maze of choices and chaos of decisions

Cancer is Over 300 Diseases

"cancer is not one disease but over 300 different malignancies, each with its own unique histology, patho-physiology, and clinical behavior"

That's pretty overwhelming to hear. But think about diagnosing.

Take the case of Lisa. Mom, student, wife, and three time cancer patient whose doctors aren't sure if her ovarian cancer has metastasized and started growing elsewhere now that she has no ovaries or if she has an entirely new challenge: colon cancer.

Reading up on how cancer is diagnosed will give you a wider view of how many different forms of cancer there are and though this reading may not be fun, it may save your life, or that of someone you love. Here are some starters:

• Blood tests for cancer
• MayoClinic for CNN: Tests for cancer diagnosis
• Baptist Memorial healthcare: Diagnosing Cancer