Had a biopsy yesterday. Docs thought the lymphoma had returned and was now possibly aggressive since it grew so fast in a matter of months. I saw the CT scans and it looked scary big but my eye doc wanted a second biopsy to confirm diagnosis.
The eye doc came in and spoke with me before surgery and said his best recommendation would be complete removal of the lacrimal glands. It would be less harmful than radiation due to my severe dry eye. I only have a little gland function remaining anyways and radiation would take out the basal tears and probably the meiobian (sp?) glands too. Radiation would leave me with no tears. I told him to go ahead and do it if he thought it was necessary once he got in there and saw what was happening.
Surgery was done under a very light twilight anesthsia. I heard them talking about me during surgery. VERY weird!! At one point I heard him call for his camera for surgical pics. That is going to be lovely photo. It turns out they found the gland covered in cysts!?! My eye socket had filled up displacing my eye. Ugh. They were able to drain the gland and shrink it down. Dr said he didn't see any lymphoma and it may just be Sjogrens. I still need to wait for the biopsy and test results on the cyst contents. It might still be low grade lymphoma but that's better than aggressive. If it is Sjogren's I have no idea what that means regarding treatment. Hopefully it will mean less invasive treatment of the other eye.
I'm a mess and look like I've been KO'ed by Mike Tyson but am relieved for now. I was a miserable sod yesterday but luckily the severe pain only lasted 24 hours and I just need some Tylenol now. I have a follow up with him on Thursday and hopefully the pathology report will be back. I can't wait for the swelling to go down and see what my eye looks like after being swollen shut for 6 months!
Cryme-I don't understand all you wrote about, but it sounds as though you may have a better outcome than you'd expected. I'll put my prayers in there for you for a good follow up doctor's report next week. (I'm also waiting on a biopsy next for other matters.) Lucy
Well, that was certainly some ordeal that you have been through. It is good that your doc is thorough. Sounds like he did a good job and has good judgement also. It will be interesting to all of us to see what your biopsy brings. Hopefully, no lymphoma, but if sjogrens then just what is going on with the sjogrens.
Please know that I will keep you in my prayers. Irish ;D
A bit of backstory: I had the first biopsy and was diagnosed with lymphoma in November 2010 and had a 4 weekly doses of Rituxan a year ago. I had a partial remission and in October began to swell again. I saw the rheumy in November and bloodwork was normal. Tried to get into see the oncologist and they gave me an appt in February! My eye doc got me in the next week. Saw my Rheumy in mid March bloodwork still normal!!!
Cysts were not present in 2010.
Sending positive thoughts and prayers your way that the lymphoma has not returned - I'm glad your pain is subsiding too. Keep us posted on the results!
Sounds awful scary to me!
I will keep you in my prayers for the best possible outcome for you!
Hugs, Joanie :)
Hope that things feel better soon. It sounds like things are on the right track now!
So glad to hear that the initial results were not as bad as originally thought. Hoping that you continue to heal well and the biopsy report is just as good.
Keep us posted....
Cryme and Lucy:
You are both in my thoughts and prayers while you await biopsy results. We all hope to hear good news from you!
Hugs,
Cheryl
Swollen for 6 months?? What did they do for you in the meantime?
Hope all is going to be OK... and GLAD the pain is down!
And with all this you worried about your house!
Eek. Forget the house, clutter and etc.
Recover, keep us posted, and here's hoping the outcomes are good.
Hugs and more hugs
Elaine
jazzlover - Since the lymphoma clinic thought it was cancer they would only offer radiation therapy to the orbits. I declined treatment.
While waiting for surgery I didn't take pred or steroid shots because I wanted the eye doc to see the max disease and get a good sample to make a decision. I didn't know the wrangling between the two departments was going to drag out so long in the end or I would have tried something.
You are very brave. I would probably just fold up.
Thank you for sharing this with us. Please take and I only wish for the best outcome for you....NO lymphoma recurrence.
eye2dry