Having Cancer Does Not Feel Good

breast-cancer-ribbon-2A few days ago the NY Times ran an article in their magazine entitled “Our Feel-Good War on Breast Cancer” by Peggy Orenstein. Everywhere I looked people were re-posting it, adding links to facebook, emailing it to me.  Yesterday, I finally got the chance to read it.

Orenstein takes on a few important topics…   The risk/benefit conundrum of yearly mammograms…  The over-selling of “early detection” as the answer to breast cancer…  Questionable over-treatment and fear tactics…  The unchanged death rates…  And the beyond ridiculousness of the pink ribbon campaign to raise awareness –  I’m pretty sure we’re all aware now.  Breast cancer is big.  It’s wrecking havoc.  We know.  Now let’s use that money for a real purpose, like funding research to find a cure, figure out the causes of cancer, or help metastatic patients live longer.  The messages in Orenstein’s article aren’t necessary new.  But it is nice to see the NY Times giving it press and especially nice to see Orenstein acknowledging the small and often overlooked percentage of us with metastatic disease.

I personally am very leery of frequent mammograms (and other scans for that matter).  I keep reading that the cumulative effect of radiation from regular mammograms actually increases the chances of getting breast cancer.  Kind of ironic, eh?  Just like Tamoxifen increases your risk for uterine cancer.  And breast radiation may cause lung cancer.  And Herceptin may cause heart failure.  Gotta love it.  It’s a constant battle of weighing the odds.  The benefits vs. the risks.

Since being diagnosed in November 2011, I’ve gone through more scans than I care to count and my body’s been subjected to endless amounts of radiation.  In my new approach to this disease I am now saying no to scans every 3 months (as well as to radiation treatment, Tamoxifen, and Herceptin).  When my oncology surgeon recently suggested I get a mammogram & ultrasound prior to my second reconstructive surgery I opted to skip the mammogram and just get the ultrasound.  I mean, when they do find something suspicious on a mammogram they send you for an ultrasound to further confirm anyway…  So why not just skip the questionable mammogram and go straight for the ultrasound?

It wasn’t news to me that death rates from breast cancer haven’t changed in the last 20 years.  While early detection may be finding more cancer, we’re still dying at the same rate.  How can that be good?  Seems like an obvious red flag that the current approach is not working.  While many people realize this, it really sucks that the medical establishment hasn’t caught on yet.   And while I truly appreciate the efforts of researchers who continue to understand more & more about the inner-workings of cancer and how it forms and grows, I hate that what comes from their brilliant research is just more drugs and toxic treatments.

I love Orenstein for giving a shout out to us metastatic folks.  Acknowledging the paltry sums of research dollars we receive.  The terror we often strike in our non-metastatic breast cancer sisters.  Our absence from “feel-good” breast cancer events.  It is important for all those diagnosed with breast cancer to know that no one is immune from getting metastatic disease.  Denial is not going to help you live longer.  Awareness, prevention, and action will.  I know you don’t want to think about it.  But cancer can come back.

Which brings me to the point we should all be thinking about.  Why did we get cancer in the first place?  Illness is our body’s way of telling us something is not right in our lives.  When I was diagnosed with Melanoma-in-situ (basically stage 0 skin cancer) in 2008 I woke up for a few minutes, changed a few things in my diet, started to eliminate chemicals…  But never went beyond that.   Never did the deeper soul searching.  Never figured out healthy ways to deal with stress.  Never took a serious look at what wasn’t right in my life.  My body was trying to tell me something but I wasn’t ready to listen.

So now, with metastatic breast cancer I am asking the big questions…  Where did this come from?  Why is it here?  What do I need to learn?  What do I need to change?  How can I use this as an opportunity to turn my life around, love myself more, and give back to the world?

Cancer is a very complex disease.  It requires a complex treatment plan.  Simply getting a mammogram or changing once piece of the picture doesn’t guarantee healing.  I can eat 100% healthy organic food and exercise every day but if I’m not dealing with my underlying subconscious fears, childhood wounds, dysfunctional relationships, financial problems, or my stressful & unfulfilling career then true healing may not ever happen.

I’m on an endless quest to figure out what’s broken in my life and find ways to fix it or make peace with it.

The battle is multi-dimensional.  Cancer is tireless and all encompassing.  We have to be too.

Peace.  – T

The Scan Results Are In…

And basically, in my mind, the news is great!

The PET scan showed only two spots of concern and I am convinced that both these spots are related to inflammation and scar tissue from my mastectomy and ongoing breast expansion.   And everything else is clear.  :-)  Hooray!!!

The first spot is a lymph node measuring less than 1cm with an SUV rating of 2.2.  (Generally an SUV rating of 3 or below is considered inconsequential).  So I figure we can just go right ahead and cross that one off the list.  My oncologist agrees.  Done.

The second spot is in the subpectoralis region of my left breast at the top of my ribs at the site of my mastectomy.  It is 1.4cm and has an SUV value of 5.9.  My oncologist has ordered a bone scan and x-ray to evaluate the area further.  We’re not sure yet what to think about this spot.  Hopefully further scans will clarify what’s going on there.

But then, on my way to pick up Miss M from school after my appointment I was pouring over the scan results in my brain.  I remembered that tumors in previous PET scans all had SUV values of 13-16.  Nothing as low as 5 or 6.  Then it occurred to me that the lymph node that lit up was in the same area that I had a lymph node removed during my mastectomy.  Could it just be coincidence that I only had one lymph node removed during surgery and now only one lymph node, in the same area, was lighting up on the PET scan?  You know me, I don’t believe in coincidences.

So when I got home I started to do some research…  Turns out scar tissue and inflammation can cause false positives in PET scans up to 6 months after surgery.  One woman told how her PET scan lit up after surgery and the doctors ended up doing a biopsy of the area, thinking it was cancer, only to find out it was just scar tissue from her mastectomy.

I also looked up my old scans and realized previously suspicious areas with similar SUV ratings in the 5-6 range were dismissed with a simple note to keep an eye on the area in future scans.  And all of the seemingly suspicious areas disappeared in subsequent scans.

So now I am seriously thinking that both the areas are scar tissue and inflammation from my surgery.  Which means that in a roundabout way my scan was essentially clean.  That’s my story, and I’m sticking to it (until proven otherwise).

I also told Dr. K about my plans to take a break from the Herceptin.  His first question was why.  Although he did seem concerned, he did not try to talk me out of my decision.  I told him about my fears and presented my reasoning, to which he said that I offered a very good argument.  We agreed to take a break, at least till my next set of scans…  Then, who knows…

He also asked me yet again about my plans to take the estrogen repressing drugs Tamoxifen or Arimidex (as he does every time I see him).  And again, I told him I had no plans to take these drugs.  I’m not sure how many times I’m going to have to tell him before it sinks in.  Even when I told him about the good results of my hormone tests with the naturopath, he still encouraged me to consider having my ovaries removed as an alternative way of lowering the level of estrogen in my body.  I told him I’d think about it.  And I will.  I have been.

I truly love Dr. K.  He has been amazingly attentive, warm, caring, and open minded oncologist.  But I get the sense that he believes there is no way to keep cancer from spreading without the use of pharmaceuticals.  After agreeing to my sabbatical from Hereceptin and hormonal suppressing drugs, he asked if I was aware that the cancer may come back and spread if I don’t use these treatments.  And my response was, yes, I’m aware.  But I’m also aware of many women who do the treatments and have the cancer spread anyway.

I know everything can change in an instant.

But I keep coming back to the idea of uncovering the roots of why I got cancer in the first place.  Not just trying to cut off the infected rotting branches but addressing the roots of the tree, the soil, the environment, to ensure no more infected branches grow.

In my case, I am pretty confident in the knowledge of how my roots became diseased…  Ultimately, it was the combination of a bunch of different factors that eroded my soil and left me prone to disease…  The hormonal surges of pregnancy and breast feeding…  The incredible amount of stress I was under that severely compromised my immune system…  The fact that I started smoking cigarettes again…  All the horrible foods I stuffed in my face to deal with the stress and sadness…  The lack of exercise…  The 20+ pounds I packed on…  My poor coping skills…  My inability to ask for help…  Taking care of everyone else but myself…  Pretending like everything was ok when it so wasn’t…  And most importantly, the immensely heavy grief I carried from losing my mom to cancer…

It was the perfect storm.  A rare occurrence.  A convergence of factors that together left my body ravaged and vulnerable.  Each ingredient compounding with the next to send my previously dormant cancer cells into a flurry of activity.

These days, I think a lot about a question my therapist asked me…  When the next storm starts brewing (because we all know storms will come) – how will I handle things differently?

I think about this every day.  So I’m making changes.  Preparing for the storms.  Addressing the root causes.  Tending to the soil.  Changing the environment – both inside and out.  And this I believe will keep the cancer at bay way more effectively than just cutting off or treating the rotten parts of me and never addressing why I started rotting in the first place.

I encourage everyone to take stock of their lives.  Take a look at your roots.  Your soil.  Figure out what’s helping and what’s not.  Fortify yourself.  Nourish yourself.  Prepare.

Are your roots strong enough to make it through the storm?

Peace.  -T