Boobs On Ice™

Arimidex Bites the Dust as a Brain Fog Excuse

In September 2007 I had a small stroke, so sometimes I can blame my kind of spotty memory on that. Fibromyalgia syndrome, a chronic illness I've had for over a decade, is famous for causing brain fog, so that's a handy excuse too. Other days I say it's because I had four kids. All my brain cells exploded out my head during their teen years. 

Then take my husband. But that's an old joke.

In any case you can only use the same reason so many times. So about six months ago I tried adding a new excuse for my brain drain.

I started taking Arimidex, an anti-tumor medication that sucks up every tiny bit of estrogen left in my body, with the hope of keeping those pesky invasive cancer cells from growing. Arimidex comes with a list of side effects that "should be expected" that's as long as my arm.

I'm not getting any cooperation from the researchers when it comes to pointing fingers, however.

"BRIGHTON, England, Sept. 3 In postmenopausal women at high risk for breast cancer, two years of prophylaxis with an aromatase inhibitor did not lead to cognitive impairment, according a placebo-controlled study.

"Scores on tests of cognitive function did not differ at any time point between patients treated for 24 months with anastrozole (Arimidex) or placebo, Valerie A. Jenkins, D.Phil., of the University of Sussex, and colleagues reported online in Lancet Oncology.

"Similar numbers of patients in each group reported changes in memory after six months, and the number of affected patients decreased to a handful by the end of the study."

Great. I don't remember this story tomorrow I can't blame taking Arimidex. We're back to my poor unsuspecting children.

Unhelpful Breast Cancer Treatment Side Effects and Coping Tips

This week I'm wondering why drug companies tippy toe around issues, passing out safety information along with long lines of text saying nearly nothing that's really helpful.

Case in point for me this week is Astra Zenica, the drug company that makes the anti-tumor medication that I'm having problems adjusting to. Let's just say that the side effects are dramatic, but the other option is doing nothing to discourage invasive cancer cells from popping up in unhandy places.

So I want to give it my best shot, and looked to the website for more information about how changing the timing of dosage, or _something_  might have proven helpful to some of the thousands who have already had experience with this drug.

I was less than impressed with the suggestions / information on their "in your corner" patient support website.

Their "Coping tips" for side effect consists pretty much of the following

• "Talk to your doctor to discuss treatment options, such as over-the-counter pain relievers like acetaminophen or prescription pain relievers."

• "Apply a little heat. Try using a heat pack or taking a hot shower"

Considering they've also been talking about the hot flashes and sweating, this just does not seem too helpful. Somehow I think that those aren't the kind of caring, creative, inventive, or even technical, nor especially smart things I was looking for from inside the company which should have all sorts of data from numerous patients who have taken the drug!

This stuff though? I'm pretty sure almost all their patients came up with these ideas on our own a couple of days ago before we decided to pull out all the stops and really try to get rid of the pain, heat, nausea, headache, moodiness, dizziness and all the rest by hook or by crook.

I have the scary feeling that we're on our own here, ladies.

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.

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!))

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.

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.

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.

Doctor, Doctor, Give Me The News

Putting off things has been easy to do since Friday which was mucho doctor day. Lots of thinking and decisions were involved, but just doing something to take a step forward felt good so I had a fair amount of energy.

Yesterday - the day after doctor day - I was worn out and spent the day napping and doing not much else; not even getting dressed. There was much to write about but I kept putting off tackling it.

Tonight I found myself looking first for pocket planners and then adding various luscious moleskines to my Amazon gift list - something I almost never do even if there's an occasion coming up.

When things progressed to the point of reading about a paper animation of a cow doing something - who knows, mooing I guess - it was clear I had to write since obviously I was going nuts. Window shopping for pretty red planners is one thing but cows on a box with a crank means I'm frittering away time.

So back to Friday it is

What woke me up was a call from Doctor Liu from Georgetown, to whom I had written the "dear doctor" letter. She was sorry she had not contacted me earlier; she was out of the office. And she was sorry but she has a full practice.

Sigh. I thanked her for calling.

She said that Georgetown does not generally take patients that have been treated elsewhere. I didn't really let that sink in because I was busy explaining that I'd never really been treated, just had one visit with an oncologist who turned out to be a bad fit.

Looking back on it now it seems a very odd thing to say. Or a bad policy to have. Perhaps I misheard.

In any case, she repeated that she had a full practice and suggested the same new associate that Doctor Isaacs suggested on Tuesday. I expressed that I needed someone with broader experience but would consider seeing the associate as part of a team which would be able to provide more comprehensive care. Not really addressing that, she agreed that we could discuss my case in person and then she would refer me to the new associate if I liked what she could tell me about "the Georgetown System."

Um . .

Not really happy yet, I mentioned possible bone involvement and concern that I needed someone with experience with metastasis to bone. There was no real answer. She said she would speak with her secretary about setting up a time to see me to talk in person. When she gets to the office she should have my records.

I guess I should take a look at what it says to know what the doctors are basing their decisions on.

But that's how Friday started. This was before getting to George Washington to see my friend the art lover and reconstructive surgeon Dr Chang.

So - I'm another week down the road

Am I beginning to see a theme with Georgetown? Let's be positive, Doctor Liu was very sweet on the phone. She DID phone me personally, and eventually I will at least have spoken to someone there, in person, and will form my own conclusion about whether it would be workable for me.

It's hard not to let desperation to be treated by someone - anyone - cloud my decision making. In the meantime, what's going on inside my body?

I know, I know - in any case, I will meet Dr Liu - hopefully sometime relatively soon - and I will learn more about how the system works - at least at Georgetown.

Still it looks as if the new associate gets essentially all the new cases, not necessarily the right doctor for the right patient.

But that's just my take on things and I have been wrong before. That said, I'm not giving up on needing a half dozen eighteen month planners from moleskin.