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.
Allie E. Morse 
I’m thinking of you Allie. I was looking through the new Facebook timeline earlier and I stumbled upon your Iceland blog/note that you’d tagged me in a way long time ago, before the mod etc and not sure if I’d looked at it properly before. It was nice reading the little details, like the sulfuric smell of the water that I also remember from very short time I was there a few years before Brandeis. Sorry, that’s kind of random….but I’m thinking of you and you’ll be in my thoughts during my own personal moments of reflection and any other opportunities for good wishes that may present themselves. I hope you can still take one day at a time, t some degree, and that at least maybe, things might at least feel a little teeny/tiny more clearer? more manageable? when the sun comes up. And I know this is cheesy but these lines are the kind of thing that I know have made me feel better sometimes, at least in terms of right now and taking things one day at a time “It’s like in the great stories, Mr. Frodo; the ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end… because how could the end be happy? How could the world go back to the way it was, when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines, it will shine out the clearer.”
I hate those damn pesky scans. They show too damn much sometimes. I have had my share of false positives. At the end of chemo I had a new tumor – but it was benign and sure has hell through me for a loop.
My advice is take it one step at a time. First get the damn biopsy. I have had the armpit surgery (axillary node dissection) and am living with the lymphedema crap (and crap it is). But my point is I am still here. I would rather deal with crap than not be here to deal with anything. If they find anything, you can deal with that later.
Next find a therapist/support group/shrink or something. Don’t try to do this alone as the cancer roller coaster is one hell of a ride that I would not recommend for anyone. I tried it once by myself and it ruined years of my life. The second time around I grabbed every life line I could find.
In the meantime, a big hug to you.
PS I have a couple of friends who have been the stem cell route and are fine now.
Allie: do what feels like the lesser of the 2 evils to YOU, not to anyone else. They aren’t in your shoes or your body. Which is that….waiting the 3 mos. or the biopsy. There is no good option, there is only the option that will work better for you. Our thoughts and prayers are with you even before you asked.
This medical stuff is kind of over my head, but I hope that everything works out the way you want it to…
Hey kid; I’d start on the phone calls now to bank eggs so that you have an idea of where to turn when you need to.
Stem cell transplant has come a long way since my dad needed one.
Cancer is a rough road; I’m sorry you’ve been “picked” to ride. I hate cancer. Cancer has robbed us of our lives; our savings.. next will probably be our house which we’ve never gotten to enjoy since moving here. I know deep down that this house served to be a location close to the best place for my hub to be treated with his cancer & it’s why things happened in our life. I don’t know you in real life but know that you are in a good location for the type of cancer that you have. You’ve been through so much; I know you have to be exhausted by now.
I’m glad you found a message board; you need others going through the same cancer as you.
I have no words of advice for you. I will light a candle; cross my fingers & toes & send positive energy your way. I’ll also leave you with a cyber ~Hug
This happened to me too! I was treated for Hodgkin’s in 2010, and it’s reassuring (although really sucky) that others have gone through the same thing. I had residual PET activity for at least 6 months after treatment, and my doctor attributed it to inflammation and healing. Continuing to send you positive thoughts, even though I hope this scare is behind you now!
Thanks! My next scan is in January so fingers crossed. I love your blog! Are you going to be in the Boston area over break? You should come to the Stupid Cancer Happy Hour at Joe Sent Me in Davis Square on the 28th! We’ll be having more if you can’t make it. I live by Tufts so if you ever want to have a super Hodgkin’s dinner or coffee night, I’d be totally down. 🙂
Ahhh I have a scan in January too.
I’ll be back in Boston on January 3, but I’d love to get involved with the group another time… just joined the mailing list! I always like meeting other survivors (there aren’t many at school!), so let me know if you want to meet up… January’s a pretty low-key month for me. 🙂