Boobs On Ice™

MBIs Hold Hope For Early Detection

From the Mayo Clinic comes word that Molecular Breast Imaging is More Effective than Mammography at Detecting Cancer in High-Risk Women with Dense Breasts

The information released this week says "MBI is a relatively new screening method that, while more expensive than mammography, is about one-fifth of the cost of breast MRI (magnetic resonance imaging). With MBI, patients are injected with a short-living radioactive agent that is absorbed by breast tissue. This agent is tracked with a specialized camera that can distinguish healthy tissue from breast cancer tumors, as cancer cells absorb more of the radioactive agent than healthy cells. MBI is currently available at a limited number of cancer centers, but its availability is growing."

“These results suggest that MBI could become an important screening tool for women who have dense breast tissue and increased breast cancer risk,” said Carrie B. Hruska, PhD, a research fellow in the Department of Radiology at Mayo Clinic in Rochester, Minn.

Speaking as a woman who had a negative mammogram in a breast that obviously contained a significant thickening, and was later diagnosed as cancerous after ultrasound, biopsy and MRI imaging was completed, I'm looking forward to finding out if the medical community can prevail on the insurance machine to be enlightened enough to use this information as a way that could potentially nip any future problem in my remaining breast in the bud.

What's the Difference Between God and A Doctor?

The punch line to that joke is "God does not think he's a doctor." I heard it last week and it's pretty apropos here.

Wednesday June 4th was my appointment at Georgetown with second of the Lombardi docs who I had asked to take my case. I guess I went into it hoping for more than I should.

Setting the stage for this visit my mind was a mass of questions and my family doctor felt that the case was complex enough that a comprehensive cancer clinic was the place to go for answers. She suggested Georgetown’s Lombardi Cancer Center and now after two months of trying to get seen there I was just a few hours away from my appointment as I started writing about the impending visit.

It was 3:30 AM Wednesday morning and I was awake in spite of taking an ambien at 11:30 and a valium at 1AM.

My mind was swirling with the questions of a curious sick person.

• What do my symptoms have to do with pain in my breast then other areas that I thought were fibromyalgia?  Were many of them cancer symptoms all the while? My reading via well respected cancer websites seems to indicate they might be. Neither my surgeon nor my GP thought that these ideas were out of the question.

There were funky areas in a bone scan;

• did the intense sternum and spine/hip pain I had dismissed as something else mean the cancer has spread to bone or is something else is wrong? How would this impact completing reconstruction on the removed breast and reduction on the other at George Washington University Hospital this coming Wednesday?  Has cancer spread somewhere else? Is it responsible for new symptoms and old symptoms or just new ones - or none.

• How might my heart problems and a small stroke diagnosed in late summer 2007 tie into the picture and how they might affect my treatment options? I‘d read about the concerns with some therapies so which applied to me?

• Did any of my issues have anything to do with the unknown lymph system problems that landed me in the hospital in isolation at age 12 and persisted for over a decade? Does being allergic to everything play a part?

I was uneasy but hopeful about how this doctor would suggest I proceed. I wondered if Georgetown has a comprehensive team that deals with complex medical histories. In order to make sure I understood what the recommendations would be and what a program of treatment would entail I enlisted my husband Bill and daughter Kate to accompany me. Both were super in assisting me to clarify questions and providing moral support.

I did in one way get answers

And indeed I was seen. The bad news is that none of these questions were really addressed in a way I felt was helpful. Some I never brought up when it was clear that this was not a match made in heaven.

Within minutes after Doctor Liu entered the examining room with an assortment of four residents, fellows and nurses in tow I had been dismissed in more ways than one.

She stayed a few minutes, conveyed what shed decided to convey then exited without wishing me well and without shaking hands as she left. While I hope the Residents don't learn that this was the way one treats patients, there’s a lot I learned from the visit:

A.) Doctor Liu stated that cancer has nothing to do with other physical problems. She made it very clear in her answers and in her tone that she treats cancer as an entity without a comprehensive approach. How the whole person reacts to the disease or their current physical health is not really her concern.

B.) She believes that breast cancer, when removed, is “in some petri dish somewhere” thus unable to cause any symptoms, in spite of mountains of evidence to the contrary that has turned up from everyplace from NIH to UCLA to MD Anderson.

C.) From her examination of tests she says there is “No evidence that the cancer has spread” to the bone but these areas should be closely followed. When asked how she knew this she said “I’ve seen the x-rays” Period. She gave no explanation for why I was having such serious rib pain or what questionable areas on the bone scan were other than possible degenerative changes. This is not cancer related - end of story and without asking any questions of me about symptoms, why I felt they were related, etc.

D.) Although she does not like charts and statistics she strongly implied that I was foolish for going ahead with surgery to finally finish my breast reconstruction this week, rattling off options for various forms of chemotherapy but using initials to discuss regimens and neither slowing down to seriously discuss the merits of each nor giving a hand-out of the options nor discernible justification for her rationale that chemotherapy was the wise choice other than an implied “because I say so” (not her words - but her attitude)

E.) Her dismissal of the relationship of trust between my surgeon Doctor Chang and me, and my desire that he complete my surgery before he left GW in July was disrespectful to both him and to me.

F.) She disagreed with Doctor Kaltman’s use of statistics and percentage of risk as well as her view that Aromatase inhibitors rather than Tamoxifen would be the right choice for hormone therapy, and expressed this in a fairly dismissive tone.

G.) “We know everything about Tamoxifen there is to know”  pretty much sums up her end of much of the conversation.

H.) When asked at the very end what she thought my next step should be given that I was unwilling to cancel surgery in less than a week she mentioned Doctor Kaltman. It’s clear she prefers I have my cancer treated pretty much anyplace other than at Georgetown but she covered her bases and saw me with plenty of witnesses present. End of story.

I.) Her view is that if have pain since it has nothing to do with cancer (back to items A. and B.) a rheumatologist needs to address that. But she is too busy to coordinate any cancer treatment with the treatment of any other doctor. She told me bluntly that it is my job to find specialists in multiple other areas and coordinate care among them.

So I’m left with the questions I walked in the door with . . . and others.

If a teaching hospital is not where one goes for helping get to the bottom of  my questions who could possibly tackle the combination of cancer, osteo-arthritic and immune system and other glitches? 

It is possible that there are answers to any of this in any cancer center? Maybe not. Doctor Liu reinforced my growing fear that there simply ARE no answers and the problems are too daunting to attempt to find solutions for.  But I keep believing in the possibility.

There’s good news too though.

I left without one question occupying any place in my mind. There is no doubt that Georgetown could never help me find the answers I seek - even the most basic ones. 

My favorite analogy again surfaces as it does regularly in my life: Many times we find ourselves in front of what looks like a bowl of spaghetti. Each single strand not easily identifiable as individual challenges and not easy to separate from one another, much less find one end or another.

Six months post diagnosis I know it’s only the beginning of many years with no guarantees and no easy answers.

But this really is good news in a way. I know Georgetown is not for me and i know what kind of doctor - and what kind of approach - is not workable in this situation and for this patient. For every door that closes another opens.

In the meantime

What I need to do now is get through the week.

• Monday more testing at George Washington in preparation for surgery.
• Tuesday rest and tie up loose ends.
• Wednesday removal of the tissue expander in my chest wall and insertion of a  breast form in the pocket created by the tissue expander plus reduction of the other breast to more or less match the reconstruction.
• Thursday discharge from hospital if all goes well; returning home to put mounds of bags of frozen peas on my chest.
• Friday lots of sleep, measuring drainage tube output, and more peas.
• The following seven to ten days of much the same.

Doing my best to keep positive even though answers are few and far between, I’ll tackle the next steps when this incline has leveled off to a nice plateau. if we lose power or I'm disconnected from the net during my recovery period I may threaten to jump out the window. Instead I'll probably check into a hotel.

--

And that's the end of that.

However before Georgetown complains about my characterization of this event: I was very impressed with the rest of the staff of the Lombardi center, from the intake to the last interaction before leaving the facility: the lab technician, who I found both charming and skilled.

I was treated well at every point of the process except for the meeting with Doctor Liu with which I was very disappointed.

This is my opinion only and represents how I experienced this meeting. How Doctor Liu or anyone else experienced it or interprets it I'm unable to say and has no bearings on my case.

No harm and if we all behave like adults all ahould go well for Me, Doctor Liu and Georgetown (taught my my favorites, the Jesuits - - well, unless one counts the Paulists (HI Father Frank!))

Being Tested; The Reactive Cancer Patient

I’ve put off writing about me for awhile. It’s easier to talk about potential cures or treatments or research than reality. A day of testing last Thursday started not so great and ended worse.

The bad reaction to the contrast material that I took via mouth and by IV for the CT scan started the ball rolling and took the next three days to approach being back to normal. There was great broiling bubbling and rejection from my digestive system, lasting well into Sunday. It was like sitting on the stove set on slow simmer.

It was all I could do to go from bathroom to bed, and back again, but I made few forays out to do this and that with my family, an odd display of bravado and stupidity.

That’s before my immune system took over and the skin eruptions and itching began. Maybe my body really does not want to be diagnosed. Sometimes my mind joins the body in that camp.

Such a shame that all this time was wasted sleeping, sick to my stomach, sleeping, in the bathroom, while I’d intended to be doing research for my upcoming visit to Georgetown which I hope will be - or might be - the place that provides the answers to my questions.

I like research because it gives me a feeling as if I can control at least something abut this disease: it’s knowledge.

Maybe the hardest part is not just not knowing what’s happening but having no control. And feeling in control is a big part of positive outcomes in cancer. Understanding the control issues is one of the hard parts makes me more sure I need to add control to my life.

I've given up more control in the past ten years than I thought possible. Taking stock of things I can control is appropriate now. If I can just get some guidance on global issues of treatment I'd feel a lit more in control though.

Perhaps tomorrow  at Georgetown I'll get a sense of what's possible to do.  I understand this doc is too busy to treat me. But she's supposed to be smart. Maybe she's the one to help me put the pieces together.  One can pray.

The Great Unknown - Facing Fears

When Eden Spodek wrote about her long ordeal in a healthy woman's battle with breast cancer she was extremely brave. And I surmise that she was brave through the whole experience.

It sounded like me in my forties; A part of me that's gone missing. For example although I knew most of Eden's story in advance, when I read it I cried. I gave her some feedback, then cried again. I sobbed when I pushed the publish button and again when I read it to my family.

I'm not generally a crier. Instead I'm more likely to just take action. Jump in. Fix something. Offer something. DO something!

But she was so brave. I'm so disappointed with myself by comparison these days.

All week I've been trying to figure out what's really at the core of this fear that's increasing daily to the point that it's overtaken me and nearly frozen me in place.

Back in December when I get that sudden diagnosis of invasive breast cancer that had already grown, I was very matter of fact. I went through the testing at that time with my pragmatic self intact.

An odd blend of self- deprecating black humor and perkyness seemed to be a good defense.

But over the past five months much of my authentic self seems to have ebbed away and my veneer worn thin.

My husband any youngest daughter have provided sounding boards and care whenever I asked something of them - and even when I didn't. She cooks, shops, runs errands, and does the nurturing part of the job. He cleans, works, makes appointments for me and goes to most, then goes back and works some more before coming home to play listening board to my concerns.

Why can't I be brave and strong with all that support?

Searching for clues, tonight at http://www.breastcancer.org I read a question from a woman who admitted to having a high level of fear about her cancer experience.  Rosalind Kleban MSW, Administrative Supervisor for psychosocial programs at Memorial Sloan-Kettering Cancer Center's Lauder Breast Center in New York City told the patient:

"you are doing brave things—taking care of yourself and doing things that need to be done. It's always amazing to me how wonderful breast cancer patients look. That just covers what they're experiencing within—the terror, uncertainty, fear—how they are really feeling."

I'm not so sure this applies to me. Oh sure, I'm doing some of the things I need to do. I've been looking for a doctor who was on my wave length and so far the progress is that:

• My mastectomy has healed and my chest wall gradually expanded.
• I now have one partially rebuilt breast and one intact breast that will be "matched" in a double surgery that has been moved up to June 11th. The end of that road is in sight.

• On the other hand a bone scan reveals that cancer may have spread and could be responsible for pain I'm feeling in a number of other areas.
• These will be screened tomorrow with CT scans and X-rays.
  

• I'm meeting with an oncologist on June 5th to go over new CT scans and X-rays test results as well as pathology reports and tests from December and January..

But most of that has been guided my husband's appointment making skills. Behind the progress I'm beginning to come apart at the seams and the uncertainty and terror is starting to show. It's not the CT scan, or the IV contrast and bariuum coctail that I fear.

Beyond the tests is the great unknown

So perhaps it's really about the long schlog just to get to this point. And the waiting. Perhaps it's about more strangers and even more doctors. Then add in putting my trust in each person on a medical staff will assure that their part of the process is done and done correctly.

It could be the myriad of possibilities that await, or even resenting putting on a positive face. And the responsibility of educating myself and the family so that we can consider options of what to do no matter how things turn out.

In the end

The wearing away of my pragmatic, chipper, upbeat
self is getting on my nerves. If I was my kid, I'd be tempted to give me/them a swift smack on the tushie and tell them to lose the tone.

The Doctor Who Will Not Take You as a Patient Will See You In June

There's both a lot and really only a little to update - the good news is that something will happen in June. Thanks to sharing what was happening with Allyson Kapin from Women Who Tech who'd told me her sister's experience at Georgetown it gave me an opportunity to think through where I am.

So here it is

Suddenly Georgetown at least seems interested in providing what looks on paper at least like a good intitial screening. WHY and how did they suddenly decide they want to do this? I don't know.

Considering that both Oncologists that I wanted to see have declined to take this case it's amazing that the latest I've contacted now has faxed an Rx for CT scans of multiple areas - which I've looked at and the order seem to be very comprehensive.

Dr Liu want test results before I meet with her sometime in June. As she told me before - this meeting is just to give her recommendations and to pass me on to the newest oncologist because Liu has a full practice. I'm glad to do the testing and get at least ONE opinion on my options - especially to take a step forward and to get some answers that the testing may give us.

My plan: to flat out ask about concerns

First: I need someone who is eager to take on and solve complex problems. This is not a simple case as I see it.

Second: Is cancer spread to bone or elsewhere responsible for symptoms I've been having that I was blaming on other things? Which symptoms are caused by other chronic illness and which are caused by cancer? Is creative treatment based on unique needs something Georgetown does well or is it a case of: "we give you standard treatment for breast cancer after mastectomy."

Third: The proposed doctor they were referring me to was one whose interest was in cancer prevention. She is not a specialist in any of my challenges. That just seems so naive that it alone almost makes me hesitant to commit to Georgetown as a treatment facility.

Fourth: Will care be comprehensive; decisions made by an oncologist, orthopedist, neurologist, cardiologist, psychologist etc or would that be only a special case or if a special need arose?

Since managed care insurance makes it difficult to get hospitals to involve multiple specialists unless that is their standard of care, how will this affect me? I accept that I'm not dealing with M.D. Anderson Cancer Center but how close to that standard can they come?  Since I had a TIA last August and other chronic illness I need to know that my cancer care is not going to make other problems worse.

Fifth: What's their approach to pain management? Does this mean yet another Doctor to try to get in to see? How would they immediately improve my pain situation?

Sixth: Will they go to bat for the care they want with my insurance company or simply fold to guidelines?

Do or die

If I don't get good answers I'll supposedly keep meeting with docs until I either do or die. The only problem with this is that the clock is ticking and I'm not having the anti-hormone treatment that looks on paper to give me the best shot at beating any recurrence that hasn't already begun.

Will that be Georgetown's recommended treatment? Will Liu agree with the prognosis which will change obviously for the worse if the bone scans do turn out to indicate even more cancer? All more questions.

At least right now some things are clear

1. I'll do multiple CT scans and xrays at Sibley Hospital in DC Thurs May 29,
2. I'll meet Liu at Georgetown around June 12th to go over tests and be passed off to someone else if they can convince me to do so
3. I'll try to see if I can see Wells at Hopkins with the results of the CT scans and other bone results I'll have after I meet with Liu.
4. On the 18th at George Washington U Hospital I'll have my second breast surgery with Doctor Chang - this time cleaning out the expansion capsule and adding a breast form on one side in the pocket created in my chest wall and then have the other breast matched to the new and improved model. And yes, again I go home with drains in place.
   
5. And talk about something to get ballistic about, this is only allowed as a 23 hour hospitalization by my insurance company just like my mastectomy was. No, I'm not ballistic, just really makes me sad that there would be a standard of care so low.
   

Goals

At the end of surgery I'd like to recuperate knowing for the most part what I'm facing as far as other therapy. I'm not sure that's possible, but I can hope.

Sitting around on a rock on the coast of Nova Scotia for the Month of August would be nice too. I just don't see that happening either.

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.

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.

Update: Just the Facts

Readers are so supportive and I owe you big time. And OK, fine, I may not be able to accomplish a "just the facts" entry but I'm way behind updating and there have been developments in the past week so here are some highlights.

• Pain control: a little better since last Thursday when GP, Doctor Zapp decided I'm obviously not getting into see either an oncologist or a physiatrist anytime soon. (No not a psychiatrist, this is a doctor who specializes in musculoskeletal conditions including pain and the "overall" patient). So Dr Z bumped my meds up to a very conservative pain drug that is helping a bit.

• Oncologists - Ha. See Doctor Doctor Give Me the News where we learn that all Georgetown Oncologists at the Lombardi Center are too busy to take me as a patient, except the new one whose interest is listed as preventing cancer. I think that horse has left the barn and she's taken the wrong job.

• "But one Lombardi Doctor did say she'd SEE you right?" Yes but only to discuss the case, and see if I like the Georgetown system. Her secretary will call me but I'm not holding my breath.

• I got many suggestions after the Please Help letter, in fact one was a referral to Shawna Willey who's not just a doctor but also the head of the Betty Oursman Center, which is really another part of the Georgetown University Hospital's Madhouse on the Potomac. Only problem was that when I called they no idea why I was calling, so the referral turned out to be more like a suggestion. Since the other Georgetown Doctors had my file upstairs already this one went nowhere. I appreciate the thoughts and all the nice suggestions but either Georgetown is totally disorganized or they weren't really expecting my call.

• Katie Paine, survivor and cheerleader, keeps threatening to abscond with me to Dana Farber Cancer Center in Boston and I seriously considered grabbing my records, begging a series of rooms for a couple of nights from the Boston techie and new media community and actually going until I did some digging and found out that Blue Cross or whatever they are calling themselves around the DC area now is not paying for Dana Farber.

• Now researching other local doctors not associated with Georgetown or George Washington. Johns Hopkins is a possibility since from the far western exurbs of DC it's about two hours away in Baltimore give or take and traffic willing. I keep seeing the name Kristy Weber connected to breast cancer and an interest in its willingness to spread to bone, and she's at Hopkins. We shall see.

• I DID see my friend the reconstructive surgeon Dr Chang from George Washington on Friday. We're set for surgery on both breasts on June 18th. One will be brand new with the expander removed and the capsule cleaned out (ouch) and replaced with an implant. And the other will be reduced and reshaped to match my smaller younger cleavage, or as I call it, new and improved boobage.

• My insurance will pay for a 23 hour hospital stay. Did you hear that? Not an overnight stay - 23 hours. For surgery on two breasts. In a sixty year old woman, This means I'll go home with two drains in place which I will yet again have to deal with measuring and emptying. And this is not - let me stress - elective surgery. Heads should roll. Don't even start me. I wonder how much a whole night costs? Should I pass the hat in lieu of even having insurance?

• And I did tell him about the bone scan and how my primary doc was the one to get the report about it, slipped in with notes from the one visit to the abandoned oncologist.  Attempting to discourage my worry about what the heck it is, he will do his best to get me seen my an oncologist at George Washington but stresses repeatedly that he does not think that I will like the system at all and would prefer a more "suburban" setting. Oh this should be good if he's warning me about it in advance.

• Then he dropped the bomb that he's leaving GW at the end of July and going to New York. This being dissed by doctors is getting out of hand. I'm kidding. I like him. I think he likes me. We're good.

• Tomorrow first thing I do is call my friend George's internist. I need reinforcements on the pain control and bone issues. Then I call Dr Zapp to give her the updates. And I need to schedule an eye exam. Not to mention a head exam.

To Sum Up

Nobody available to look at bone scan results from February that show something going on in my thoracic bones and spine.

Pain relief so-so but better. 

Fatigue improved since pain relief improved.

Drive-thru for new boobage on June 18th. 

Going home two days too soon.

Then reconstructive guru leaving me for the big city.

Still looking for oncologist team - stressing team, not lone wolf.

I HATE doctor shopping. I want a team of docs who all work together and tell each other what the heck they are planning. But since it's not 1960 anymore I guess that's out.

Otherwise things are great. And I am ordering that 18 month red planner from Moleskine. Maybe two. That will guarantee at least three more years of this kind of fun.

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