Diclaimer - I know this could be minor stuff compared to what many of you have been through, and I am truly blessed by my family and friends support through everything... but sometimes, a girl needs to vent...

Well, I had my 2nd PET-CT scan following radiation today, and a visit with the surgeon afterward. He tells me I look "perfect, except..." and then tells me that one of my tonsils was reactive in PET scan, but it looks normal (small) otherwise. He wants me back in three months, but otherwise didn't say much, except to repeat that I looked "perfect"

Until I was in the car leaving, I didn't think to mention that I've had a very minor sore throat since radiation... I just figured that it was a combo of seasonal allergies and slow recovery from the rad. I plan on asking the doc about when he calls with my official PET results later this week, but in the meantime, I am freaking out a bit. On the other hand, I don't want to make a big deal of this and worry my family for nothing....

I hate the not knowing, and I feel like I was just getting back to "normal" life, and it may be slipping away again. I thought I'd at least have some time before the cancer came back...

For background - adenoid cystic carcinoma is a rare slow growing cancer with high recurrence rate, and since it's slow growing, there aren't any effective chemo treatments. The thought of this cancer coming back is terrifying to me, but I'd prefer to know for sure one way or the other...

Thanks for listening to me vent.



  • 11 Comments sorted by Votes Date Added
  • I love the title! I can't imagine a time when I won't get anxious going in for a scan or a procedure. I hope everything turns out well and at least he descibed it as "perfect"?!?
  • ambreenambreen Community Member
    I have a pet scan coming up on Tuesday that I'm really nervous about. No one ever wants to hear bad news. We just have to hope for the best and take it as it comes. I really hope that "except" ends up being nothing at all. He did end with a "perfect" so that seems like a good sign to me!

    Good luck with everything!
  • LeesuhmLeesuhm Community Member
    Thanks guys. I am feeling much calmer after sleeping on it. Now, I am trying to focus on the "perfect." Thanks for listening to me vent - that's what the thread is for, right?

    Ambreen - I wish you the best of luck on your scan - try not to worry toooo much about what might be. Easier said than done, I know.
  • LeesuhmLeesuhm Community Member
    Turns out I was worried about the wrong stuff... CT scan showed nodules in my lungs. To small to biopsy yet, but chances are high that the cancer is back. all I can think of is the description of ACC I found online: "unpredictable...progressive, insidious and relentless."

    Crap. this is not what I wanted.
  • I'm sorry to hear that Leesuhm. I'm definitely praying for you and sending good thoughts your way. Any chance its just granulomas (sp)? They found spots on my lungs, but it turns out it wasn't cancer, but these benign growths.
  • LeesuhmLeesuhm Community Member
    yeah, mind just automatically goes to the worst...They can't do any testing unless they get bigger. ACC typically spreads to the lungs, though. It is going to be a long three month wait to my next scan.

    Thanks for the prayers!

  • My mind always goes to the worst. My main syptom of NHL was itchy skin. Every little itch gets me nervous. The subsequent scans after the word "remission" were "perfect except ...." I had areas in my sinus glow and in my neck too. For nearly a year of PETs every three months were like that. Finally though we've chalked it up to inflamation because I would alway have a minor cold before a scan and the inflamation can last months.

    I'm sending out good scan vibes.
  • samsixxsamsixx Community Member
    I'm sorry, Lisa. If they get bigger, will they do radiation again at some point? I feel like knowing the treatments for relapse makes the worry more manageable. Well - a little.
  • samsixxsamsixx Community Member
    Ligaya, itching was a big one for me too - most bizarre was feet and hands. i actually went to the doctor for the itching a year before my cancer dx. a couple weeks ago my hands itched in between my fingers and that freaked me out - right there at my desk at work. fortunately they haven't itched since.
  • LeesuhmLeesuhm Community Member
    Hey all. It's been while since I've been on here, but I thought I'd give an update...wish it were good news.

    I had a follow-up lung CT on my lung nodules. Turns out all 3 they saw in March grew, and a fourth one appeared. The biggest one is super close to my heart making any treatment even more complicated. Since my cancer is a slow grower and chemo isn't an option, they usually just watch and wait with these things and only treat once they start causing problems. This does NOT seem like a good option to me! So, I decided to do a clinical trial with stereotactic radiosurgery to see if that will at least keep the current lung nodules at bay for a while. My radiation guy says there is 95% chance this will control the lung nodules they treat, but they will do nothing to treat any cancer cells in my lungs we can't see, and it is very likely they are there. ARG! I hate cancer!

    Most days I do ok. Some days the thought that I have a deadly disease that is currently incurable is overwhelming, but most days I can either focus on the fact that this is usually a slow progressing disease so I have time left, or (better yet) I can just focus on living. I have the planning scan for the radiosugery tomorrow, so I am a little nervous tonight!

    I haven't talked to anyone who's had this done, so I'd love to hear anyone who has had this - especially on lungs.
  • Haven't had that, but thanks for the update and I'm sorry it's not better news for you! Hope this clinical trial helps as much as possible. Focusing on living is a good plan :)