There really has not been much to report since my last radiation treatment until I had a great visit with my hematology oncologist yesterday. I’ve decided that he is essentially the best oncologist I could have ended up with for this whole process for a variety of reasons, and being assigned to him as a patient was really a function of random luck – he was the on call oncologist over the weekend when my biopsy results started coming back when I was in the hospital back in November. When I briefly expressed my thanks yesterday for all he’s done so far, he was quick to remind me that we’re not out of the woods yet and I can thank him when I get a clean scan – spoken like a true doctor, hedging his bets.
We covered a lot of ground yesterday. My blood work (complete blood cell count, white and red blood cell counts, neutrophils and B cell counts, and LDH and uric acid levels) looked great overall. According to my blood, I’m back to “normal”, or at least where I was when I started this whole shindig. I’m hoping my blood spreads the message to the rest of my body soon because I’m still feeling fatigued and have some shoulder and swallowing pain from the radiation. For all intents and purposes, though, I’m not immuno-compromised anymore so feel free to sneeze on me the next time you see me. It won’t kill me anymore, although I might get a cold, which would stink.
I then asked him a question I had never really thought to ask before – why did my mass not spread elsewhere? I’ve been reading an excellent book by Siddhartha Mukherjee called the The Emperor of All Maladies: A Biography of Cancer. It was a Pulitzer Prize winner in 2010. If you have any interest in cancer whatsoever, it is a fascinating read. Dr. Mukherjee writes about all of the discoveries made since the 1500’s or so about cancer – what it is as a disease, how to treat it using surgery, chemotherapy, hormone therapy and/or radiation therapy, the role of viruses in cancer, and how different forms are vastly different from one another among many other things. It’s brought up so many questions for me but this was the one that really stuck out, especially since I’ve connected with other diffuse large B cell patients who had much smaller masses than me but they spread to other sites quickly.
As a reminder, I was diagnosed with diffuse large B cell non-Hodgkin’s lymphoma with a primary site in the mediastinum (area between the rib cage and the lungs). My mediastinal mass was 13cm or so in length and it started in the lymphatic system, which is essentially a network of spherical nodes connected by ducts that runs throughout the entire body. The nodes are all interconnected, so it is unbelievable that none of the cancer cells hanging out in my chest migrated via the duct system and starting going into overdrive in other parts of my body. There are several places not far from the mediastinum where the nodes are more concentrated so I began to wonder if my armpits were somehow inhospitable for cancer? Is the area above and below my clavicle unwelcoming? Does lymphoma not like my neck? What’s the deal here?
Don’t get me wrong – I’m not complaining. One gigantic mass was more than enough for me, thank you very much, but as a biologist, I can’t help but think about these things. Who better to ask than my doctor about that, right? (The poor guy gets put through the ringer whenever I have an appointment, that’s for sure. He said he would be concerned if I didn’t have my little notebook out filled with questions for each appointment.)
I asked him this question – why did the cancer cells stay put? His short answer was, “Jocelyne, if I knew the answer to that question, I’d be a millionaire” but he explained that it likely had spread to micro-sites – in other words, cancerous cells likely inhabited other areas of my body but they were perhaps in small enough aggregates that they couldn’t be picked up on a CT scan. Fortunately, we caught it all early enough that those micro-sites hadn’t grown enough yet to be detectable.
This led into a bigger discussion of my diagnosis and treatment plan. He explained that the stages of diffuse large B cell NHL generally aren’t as crucial in terms of successful treatment and cure than it is for other forms and that varying amounts of R-CHOP rounds are very effective for all stages. This is in comparison to a disease like breast cancer where stage 2 is curable while stage 4 is often terminal. For reference, in the case of lymphoma, stage 1 patients have a single localized mass either above or below the diaphragm (the muscle that divides the chest cavity and the abdominal cavity). Stage 2 patients have more than 1 mass but they’re gathered above or below the diaphragm. Stage 3 patients present localized masses above and below the diaphragm but they’re not widespread, and stage 4 patients have widespread masses above and below the diaphragm. There are also a and b levels of each stage that denote severity/size.
I was technically a stage 1B patient – my mass was large but localized to one area. However, he explained that there is a push to classify diffuse large B cell NHL with a primary site in the mediastinum as its own form of non-Hodgkin’s lymphoma because it behaves differently than diffuse large B cell that presents in other areas of the body. He said that a notable majority of the patients who develop mediastinal large B cell are women in their 20s-30s. It requires more rounds of chemotherapy to knock down relative to patients who have similar sized diffuse large B cell masses in other areas of the body and a greater percentage of mediastinal patients require radiation after chemotherapy. In fact, mediastinal large B cell is being referred to more as its own form in Europe but the American cancer community isn’t quite there yet. If it was considered its own form, he would suspect that I would be perhaps at a stage 3 or so.
After this whole explanation, he just looked at me and said, “I didn’t really answer your question, though. The truth is, we don’t know why a mass of your type stays localized but grows to such a formidable size.” I’m totally okay with that answer. In fact, I expected it but curiosity urged me to go ahead and ask anyway.
After my last radiation treatment, I met with one of the center’s registered dieticians and we discussed a number of topics, including the importance of eating organic produce and all natural meats. This is a topic that probably deserves its own post and maybe I’ll get there somewhere down the line. Ultimately, the dietician felt that eating a produce based diet (not completely vegetarian but skewing more towards vegetables and fruits with lean protein) is the important thing to focus on in a “cancer survivor’s diet” (her words, not mine…I mean, isn’t this the diet we should all be following anyway?). However, if you can afford to purchase some or all organic, it certainly can’t hurt. The jury is still out on how much it will help to prevent future bouts with cancer. If you have to make choices for budgetary reasons (because let’s face it, paying $5/lb for organic apples is bonkers), splurging on organic thin skinned fruits and veggies is the way to go as they tend to soak up more pesticides.
I asked my oncologist about this and he generally agreed, although he thought the splurge would be better served to go towards all natural/hormone free chicken. In the same breath, he said there’s no real data to show that eating all natural and organic would make a significant different in recurrence rates and he didn’t count out the possibility that we’ll find out 10 years from now that eating “organic” was just a load of bunk, as he put it. For now, I’m going to wash all of my produce thoroughly and buy the most natural chicken that I can and hope for the best.
My oncologist also reminded me that we don’t know what caused my case of cancer. Likely, it was a combination of environmental factors plus a roll of the genetic dice and some random chance thrown in for good measure. You can drive yourself crazy avoiding ALL of the things that could, maybe, possibly, cause cancer. Considering that keeping stress levels low is important as well, he recommended that I just do my best to avoid obvious sources (smoking, smokers, tanning beds, sun exposure without sunblock, tons of red meat, excessive alcohol…you know, the fun stuff) and try to eat as healthfully as possible.
From there, we moved onto scheduling my restaging PET/CT scan…this one’s the biggie as it will tell us whether I have any remaining active cancer cells. I finished up radiation on June 13th, and my radiation oncologist had suggested that we wait 2-3 months (!!!) before a restaging scan. Radiation causes inflammation of the tissues in the area receiving radiation and those areas can cause a false positive on the scan if you don’t leave enough time for them to go down. Thankfully, my hematology oncologist felt that was a bit too long of a wait and his previous experience suggests that four weeks is enough time to avoid a false positive. He said, “Why wait that long if we can figure out what’s going on in there much sooner?” I like the way he thinks! So he scheduled the scan for July 15th and I’ll meet with him on July 18th to get the results.
Those three days will be pure agony, but it will be worth the wait if the scan comes back clean. I don’t know exactly what emotions will fill me that day if it does come back clean. I was so excited to finish up radiation as you can see from the pure bliss experienced while eating my celebratory ice cream cone:
Jeff and I have been together for almost 14 years now, and he said that moment was the happiest he has ever seen me in our entire relationship. This included college and grad school graduations and our wedding day, and quite frankly, he is right, although our wedding day is a very close second, so I don’t even know what I will feel if my oncologist tells me that I’m cancer free on July 18th.
I do know that I will celebrate, and with much more than an ice cream cone!!