Turns out that “good” PET scan does not mean “clean” PET scan. My brain heard what it wanted to hear and parsed a completely different meaning to a very carefully worded sentence. At my follow up appointment today I found out that one of my axillary nodes was pulling an SUV of 2. Everything else is clean. My oncologist set up an appointment with my surgeon tomorrow morning to discuss another excision biopsy early next week. The closest way of describing how I feel is as if a Pamplona bull rammed me in the gut.
In English, that means that one of the nodes in my armpit is lighting up on the PET scan. PET scans detect areas of the body that are quickly reproducing and therefore “eat” more of the radioactive sugar injected about 45 minutes before the scan. It can show signs of cancer, yes, but also inflammation, scar tissue, reactive nodes, strained muscles, or any number of other things. While PET scans have done wonders for oncology, there are plenty of false positives. My subtype of Hodgkin’s, nodular schlerosing, in particular causes lots of residual scar tissue so false positives are not entirely uncommon.
The most frustrating part is that it’s SO close to being a nonissue – a PET is considered suspicious if any area lights up over a 2.5 and “normal” is 1 – 2. For reference, at diagnosis my SUV levels ranged between 6.5 – 18, with this node being over 7 at diagnosis and 2.6 (which many oncologists would consider resolved) at my 4 month scan. Hodgkin’s in general glows fairly hot with average SUVs upwards of 4.5. Some other cancers, like breast cancer, have lower SUVs on the whole. My oncologist is being conservative in recommending a biopsy. It’s a mixture of trying to appease what my doctors believe is my already fragile mental state (I snuck a look at their notes where it said “Allison has a lot going on her life” – emphasis NOT mine) and trying to jump right into action if need be.
After poking around a bit on my Hodgkin’s forum when I had time to breathe and formulate questions, others expressed surprise that my oncologist would be so hasty about biopsying the node when many oncologists would consider it normal, the elusive NED (no evidence of disease). I feel a little more relieved knowing that other oncologists would consider this scan clean. It also helps that it is not palpable and that my CT scan came back normal. Of course, it does not matter how much I tell myself these things – since my oncologist is concerned enough to suggest a biopsy then I am concerned.
This leaves me a bit confused. I don’t know what I should do – should I wait 3 months for my next PET scan to see if it resolved itself? Should I get the lymph node removed (for the biopsy – it would not resolve any potential cancer there)? Neither are good options. One leaves me stressed out living in a 3 month chunk before my next scan and postponing possible treatment even longer. The other is invasive, painful, expensive, and holds risks of complications with the anesthesia (particularly given my lung damage), lymphadema, and nerve damage. I am leaning toward the biopsy as much as I dread having stitches in my armpit again (oh the awfulness).
If it is cancer, the next steps are, quite frankly, terrifying. Unfortunately, I cannot go back and do the same chemo again for a few more rounds. I also likely will not have the option of radiation due to the node being so close to breast tissue and the concern for secondary breast cancer.
Instead, I will need a stem cell transplant. I don’t want to go in depth into that process now, but in short, I will need what is called salvage chemo to knock back any remaining cancer. This stuff is really hardcore – so hardcore, in fact, that it destroys my immune system. In order to regain the immune system, I have healthy stem cells harvested from my body and replaced after the salvage chemo is complete. It’s an Allie, alt, delete. It would require about a month of hospitalization post-transplant plus a few months before I have either the immune system or energy to leave the house. Additionally, that absolutely zaps fertility so I would need to arrange for fertility treatment and egg freezing with some charities beforehand, since my insurance company will not cover it.
I hope that makes what is currently going on with me clear. As I was telling people at work, over the phone, and online today, I don’t think I was being particularly clear. What I have written is about as much information as I currently have. I will update as I get more info.
I don’t believe I have ever written this before in my blog given my particularly unorthodox spiritual bend, but I would appreciate prayers, good thoughts and vibes, crossed fingers, and lit candles for me. Thanks everyone.