Stanford Diagnosis, New Plan

My Stanford oncologist called at about 5pm on Friday; he received a preliminary report from the Stanford pathologist and he knew we wanted to hear any news as soon as he had it. They confirmed his suspicion: my lymphoma is Splenic Marginal Zone Lymphoma (SMZL). It is rare (less than 2% of non-Hodgkin lymphomas) and indolent (meaning slow growing). It is usually found in much older people. I guess I have a knack for finding the unusual. 

How were they so wrong about the first diagnosis you might ask, as we have?  The rarity of SMZL is one factor. We also read that under a microscope SMZL can look like other lymphomas, such as DBCL.  We went to Stanford specifically because these features can lead to misdiagnosis.

A common first line treatment for SMZL is a splenectomy. Since my spleen is the size of Jupiter (that’s just a rough estimate - 😁), that’s where we are headed next. A large portion of the cancerous cells are in the spleen, so removing that will result in removal of some of the cancer.  It will also relieve me of some annoying symptoms. The oncologist is referring me to a surgeon at Stanford. The surgery will likely happen sometime in July.

This surgery might be considered a little more risky than your average body part-ectomy.  While not the most dangerous surgery, the risks of severe complications are definitely looming. Having the surgery at Stanford will allow for their team of specialists to deal with issues if they arise. I will likely be in the hospital for a week following the surgery. Afterward, healing and recovery are expected to take about two months. 

While we are thankful to finally have a diagnosis, there are definitely some negatives. The bad news is that there is currently no known cure for SMZL. Oncologists use a method called “watch and wait” to monitor patients with SMZL. As you can imagine, it’s quite difficult to wrap one’s mind around the idea that you have cancer and the oncologists aren’t treating it. 

Watch and wait means exactly what it sounds like:  if symptoms flare up or numbers of cancerous cells escalate, treatment (chemo or other complicated-to-explain drugs) can be given to knock it down, buying more time.   Delaying treatment has no effect on how well it works when they do use it.  So, while most of the time it cannot be cured, it is usually managed for many years with long periods where no treatment is needed. 

My doctor was sure to point out that ongoing research could find a cure for SMZL within years (we like his optimism). Other factors in my favor include: my relatively young age, my otherwise good health, and a lack of some of the secondary symptoms that can occur.  Other than the gigantic spleen I really don’t have a lot of the symptoms that can occur with SMZL. 

The other good news is that, after I’ve recovered from surgery, I will be allowed back to work. I am excited about that. A return to “normalcy” sounds great, and I truly believe in the value of my work. 😊

If you are reading this thinking that we are taking this in stride ... make no mistake ... at the moment we are grappling with making sense of these circumstances.  We do take great solace in the fact that we have faith. We know our purpose and we try every day to continue to make a positive difference in people’s lives.  We see that reciprocated in the generosity of our friends, family, community, and even strangers.  The reading from Galatians today in mass says it all ... “For the whole law is fulfilled in one statement, namely, ‘You shall love your neighbor as yourself.’”

Thank you for the continued prayers, messages, and assistance.  Again, there may be very little to update in coming days or weeks until we know about the date of the surgery.  But if something comes up, we’ll let you know.

Bonus:
For any of you over achiever or detail oriented types, here’s a pretty simple to understand website about SMZL: https://www.macmillan.org.uk/information-and-support/lymphoma/lymphoma-non-hodgkin/understanding-cancer/types-of-non-hodgkin-lymphoma/splenic-marginal-zone.html