Saturday, August 3, 2013

Wondering what happened 4 months later

It's been just over four months since Lynn has been gone.  As described in her obituary, we established a fund at OSU in her name.  Realizing how blessed we are to live in a generous community, I have all but decided to establish a permanent named endowment.  The funds donated so far will remain as seed money until sufficient money can be accumulated to justify the creation of an endowment.  We will have the opportunity to be involved in deciding to what kind of research we should direct the endowment's earnings.

As I reflect upon Lynn's illness, I'm struck by how aggressive it was.  When you receive the dreadful diagnosis of cancer, you have to quickly become familiar with all the ways by which doctors classify the disease.  They use experience under the various classifications to decide the most proven treatment regimens.

Dimensions by which cancer is classified include:

  1. Location of the cancer: not just breast, but is it ductal, lobular or any of the many other rarer manifestations?
  2.  Is it contained ("in situ"), or has it spread ("invasive")?
  3. Pathological expression: does it react to estrogen, progesterone or her-2/nu?
  4. Cancer is broadly "staged" (from 1 to 4) based upon tumor size and whether it has spread elsewhere in the body.
A measure of growth rapidity seems absent from these classification categories.  Staging may be a weak proxy.  However, it doesn't differentiate between a case in which cancer grew slowly and was detected late or a case in which cancer grew quickly.  Lynn had just undergone a breast exam by her OB a month prior to diagnosis.  In that time, her cancer went from undetectable to a 5 cm tumor graded as stage 2, bordering on 3.

The breast specialist who diagnosed Lynn did remark upon the aggressive nature of the cancer.  He assured us that aggressive cancers actually respond well to chemotherapy.  As I'll discuss below, he was right.  However, this was the last time that the quick growth of Lynn's tumor was discussed in connection to front line treatment options (more on this near the conclusion of this post).

Two separate doctors described the same treatment regimen based upon Lynn's very common cancer diagnosis.  Comforted by such a common diagnosis along with a tried and true treatment method, we quickly launched into treatment.

Doctors told us that outcomes are found to be statistically identical for Lynn's type of cancer whether surgery or chemotherapy is done first.  Both doctors suggested "neo-adjuvant" chemo before surgery.  Radiation therapy was to be done after to be as certain as possible that the cancer would not return locally.

Lynn received two regimens of chemotherapy.  The first was a combination of adriamyacin and cytoxan (A/C).  This was the nasty stuff that made her horribly sick and caused her hair to fall out.  The second regimen was Taxol.  This one was comparatively milder.  However, it is one candidate for a culprit leading to the cancer's spread to Lynn's brain (more on that shortly).  You may recall that we were overjoyed to discover after surgery that chemotherapy had produced a "complete pathologic response".  This means that no signs of living cancer could be found in the tissue removed.

We proceeded to radiation full of optimism.  However, I have since learned that the complete pathologic response may not have been so good news as we had thought.  You can read here how Taxol may contribute to the spread of cancer to the brain.  Briefly, as I understand the issue, the drug first breaks up the tumor, disseminating cancer throughout the body.  It is then effective at eliminating cancer cells wherever it can find them.  Unfortunately, if cancer cells reach the brain, Taxol does not cross the blood brain barrier in sufficient quantities to be effective.  It seems to me that this hypothesis could still be studied further.  Though we may never know in Lynn's case, this is one avenue to which we might direct research.

Besides the question on Taxol, I wonder if work could be done to develop measurement criteria for how quickly cancer cells grow.  As I wrote above, doctors stated that research had found outcomes to be identical whether surgery or chemotherapy is done first.  Would the same be true if cancer were identified as aggressive?  Accounting for rate of growth, the following questions could be considered.

  • Would it be best to remove as much cancer as quickly as possible if it is fast growing?
  • Is Taxol a good drug to limit dangerous metastases to nearby organs when cancer is slow growing?
  • Is Taxol dangerous for brain metastases for more aggressive cancers?

I know that smarter, more informed minds than mine have been thinking long and hard on how to beat cancer.  Maybe my questions have been considered.  But these are some questions that I would pose to the research doctors who treated Lynn.

Leptomeningeal carcinomatosis has been described as having growing common incidence because people are living longer from their primary cancers.  However, that statement suggests a slow development.  Doctors told us that brain metastases from breast cancer are not unheard of.  However, to happen so quickly as in Lynn's case is very rare.  Everything about Lynn's cancer was so dramatic and rapid - both the successes and, tragically, the progression.

This makes me wonder what doctors didn't understand about her disease.  I feel good that we may be able to influence research down avenues that could help someone in the future.  Maybe doctors could treat differently a person who suffers from a manifestation of the disease that is similar to what took Lynn.  I hope that researchers could discover ways that Lynn's cancer was different so that alternative treatment methods might have been used to save her life.

4 comments:

  1. I am excited about the possibility of working with the medical community to help with research efforts that will help others who have breast cancer Mets to the brain.

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  2. Here's follow-up to some of the questions I raised:

    http://m.breastcancer.org/symptoms/diagnosis/rate_grade

    This link describes a couple of tests that researchers have identified to quantify rate of tumor growth. It states that "experts don’t yet agree on how to use the results when making treatment decisions". I'm sure that I can't even imagine the nuanced considerations that they face.

    I also read elsewhere that the manner of growth matters. It's one thing to describe a tumor that doubles in X days. It's another thing to recognize that a tumor has more propensity yo shed cells that metastasize elsewhere in the body.

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  3. There's definitely a lot more to learn about cancer beyond the first diagnosis. It can be overwhelming for any person, but more knowledge, both of the cancer and treatments, could help deal with the illness better. That said, I hope your fund is going well and that endowment can be established soon. -Aurora @ AuroraDX

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  4. Hi there! I was actually just checking out a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance -emilywalsh688 (at) gmail.com- Thanks : )

    Emmy

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