Biopsy results round 1

Hey there!  Thought I'd post a quick update since I had my biopsy done a few weeks ago.  As a refresher or for those that didn't read my last post... I had two lymphnodes biopsied through a bronchoscopy procedure because they were hot on my last PET scan.  And on a side note, they knocked me out for the biopsy, which was fabulous, lol.  After a bunch of phone tag, I found out that those nodes were both negative for lymphoma.  So, normally that would be exciting, however I still have another spot that wasn't biopsied (they couldn't access it with that type of biopsy), and it's a mass, not a node... and also lit up quite a bit on my scan.  The odds of that one being negative are pretty much slim to none. 

So... biopsy round 2 will be coming up shortly.  Yay.  I met with the surgeon this past week, and we agreed that another VATS (video-assisted thoracic surgery) procedure would give us the best result in terms of a good sample to examine.  I've had this procedure done once before, back when I was initially diagnosed in 2012.  It's done in the OR, and I'll have at least a 24 hour stay in the hospital afterward because in order to get to the area where the mass is my left lung has to be deflated, so they will leave a chest tube in after the surgery.  A few points that may potentially be different this time around... first off, the doctor said that due to my previous VATS and radiation to my chest, he will most likely have some adhesions (scar tissue) that he will have to get around.  That may complicate things (though I'm hoping it won't) and he may need to actually do a thoracotomy (which is a larger incision into the chest wall) to be able to reach the mass.  That would require a 3-4 day hospital stay afterward, and I'm really hoping that it can be avoided.  He also mentioned that if it's possible, he's going to actually remove the entire mass.  Not getting my hopes up too high on that one though, because it's situated right in front of my pulmonary artery, and if it's adhered to that at all it's best to just leave it alone.  Bleeding out during a biopsy isn't exactly in my game plan.  Anyway... I'm going to have a repeat CT scan done on Wed, so he can have an up to date picture of what things look like so he can plan the surgery.  Then Monday the 30th I'll be going in!  So any positive thoughts sent my way are much appreciated, as I'm not really looking forward to going through this again... though at least I have an idea of what to expect.  I'll update again next week.  XOXO

Long overdue update and scan results

Hey all!!  Once again, I'd like to apologize for not updating more frequently... life just gets in the way sometimes!  So, I'll start with the update that I should have posted in March, because I had a PET scan done then.  My doctor wasn't convinced that the scan would be clean with all the activity I had on the previous one, so she ordered another one.  What's a little more radiation anyway right?  Anyway... that scan came back, and it was the best scan I'd had in YEARS.  There were only three spots that lit up, and the SUV on them was so low that they were only considered to be inflammation.  Once again, couldn't believe that I actually got good news.  The word remission wasn't used, but basically it looked like the cancer wasn't active and that the Opdivo kept working even though I hadn't been on it since June.  I continued just going for monthly blood work.  I also had testing done to see if my adrenal glands had bounced back at all since I've been on a steroid since August.  We were hoping that we could reduce the dosage that I've been on, because long term steroids suck.  So yeah, that was a big fail.  My pituitary gland is definitely damaged, and those adrenals will not be bouncing back.  Steroids for life! 

So, my amazing nurse practitioner thought that we should do another PET three months after the one I had in March just to check and see how things are looking.  I had that done on Friday.  I also had my first mammogram (not fun!) because I'm at high risk for breast cancer due to the radiation I had to my chest.  I went up to RPH today to have blood work done and see the doctor to get the results of my scan.  Mammo was negative (yay!), but unfortunately the PET was not.  There were three spots that lit up. They're still pretty small at this point, but one of them is quite active.  For those of you that like details... there's one lymph node (left paratracheal) that measures 1 x .8 cm with an SUV of 8.2, another node (left hilar) measuring 1.2 x 1 cm with SUV of 5.5, and the most active is in front of my aorta... a "dominant lobulated prevascular mass" measuring 3.3 x 3 cm with an SUV of 14.3.  For reference, an ideal SUV would be less than 3.  So those good old cancer cells are back at it again.  On the plus side, it's all still limited to my chest and hasn't spread to any other areas of my body.

So, you may be wondering what's next... that would be another biopsy.  They have to confirm that it's still Hodgkins.  This time instead of a needle guided CT biopsy I'll be having an endobrachial ultrasound guided transbronchial needle aspiration.  That's basically a fancy way of saying that a pulmonologist is going to stick a tube down my trachea to get samples of the affected lymph nodes to biopsy.  Sounds fun doesn't it?  Then assuming that it's positive for Hodgkins I'll most likely start immunotherapy again.  There is some discussion as to whether it will be Opdivo or Keytruda, but I'll probably stick with Opdivo since it worked for me in the past.  And it's not like it's going to make my adrenal insufficiency any worse, so there's that. 

So, that's everything in a nutshell.  Could be better, could be much worse... but I'll get through it like I have every other time.  And I'll update after I have the game plan figured out for sure.  XOXO

Biopsy Results

Hey all!!  First off, I'd like to apologize because I should have done this update a week ago... Life just gets in the way sometimes, lol.  A couple of weeks after my last post I was set up to have my biopsy done.  I thought they were going to do a bone marrow biopsy, but once I got to RPH I found out that they were actually doing a lymph node.  Fine with me because it's a lot less painful.  They used ultrasound to biopsy the left groin node... It was actually kinda neat.  After a week went by and I hadn't heard anything, I called to get my results.  The biopsy was negative.  NEGATIVE!!!  No signs of Hodgkin's, or any other malignancy.  So yay right?  Apparently the mystery virus that put me in the hospital after Thanksgiving caused the inflammation in my nodes and spleen.  I'm not used to getting good news, ever... So I was waiting for the "but...", and it never came.  I was still worried about the spot on my hip, which I mentioned, so the NP ordered x-rays of my hip and pelvis.  I had those done last week, and they looked good too!  Seriously?!  So at this point, I'm holding off on going to NYC for a second opinion.  I go back for blood work and to meet my new oncologist (third one in less than a year, ugh) in a month.  I'm still trying to accept that things looked so good... It's a challenge because I'm used to things not going the way I'd like, lol.  As far as I know, we are going back to just watching things and hoping I stay stable.  I feel pretty good, aside from weight gain from the steroids I'm on, but I can deal with that.  Thanks to everyone for your kind words, support, prayers and positive vibes.  You're the best!!  xoxo