So today is Halloween and my 2nd day of radiation. Lots to catch up on so lets start with the fun of the weekend!
Friday was the PET scan and I really thought I would not hear anything over the weekend. Well Saturday I received an email indicating that test results have been added to the Mayo portal. And of course I was going to look. We have always known there was an active lymph node in the groin area, as indicated in these Findings, and the plan is to biopsy that during surgery….but the other 2 active lymph nodes described here had not been seen before. Here are the Findings (lots of medical mumbo gumbo, but I think I got the message:
FINDINGS: Corresponding to the 3.9 x 8.4 x 11.1 cm mass in the left vastus intermedius abutting the vastus medialis and vastus lateralis is FDG uptake with an SUV max of 4.7.
Focal FDG uptake in a solitary left external iliac lymph node, image 259, SUV max 6.9 is concerning for metastatic disease and less likely represents inflammation from biopsy FDG avid 2.3 x 2.0 x 2.3 cm lymph node beneath the right sternocleidomastoid muscle, image 82, concerning for secondary primary (Hodgkin’s lymphoma) or metastatic lymph node.
Focal FDG activity along the inferior aspect of the left ischial tuberosity secondary to injury at the origin of the left hamstring musculature corresponding to MRI findings.
Mild focal FDG activity along the anterior surface at the right lower lobe bronchus before its bifurcation, images130-133, corresponds mild soft tissue mass with calcification on series 3 image 295 of the comparison chest CT. Findings are indeterminate but may a reactive lymph node versus malignancy.
Stable scarring/fibrosis within the lungs bilaterally. Surgical sutures in the right upper quadrant compatible with prior right hemicolectomy with anastomosis at the hepatic flexure. Sigmoid diverticulosis. Calcified nonobstructing left 6 mm renal stone.
Note: Have known about the kidney stone mentioned for probably 15 years.
Shortly after I got this email, I got another email indicating that they added an appointment with the doctor on my schedule on Monday. Right away my anxiety level increased even more thinking that there is something going on that they have me seeing the doctor. Would I still have radiation? Was the plan still to be here for 3 weeks or would we have to change all of our schedules?
Monday
Fast forward to Monday. We walked in to check in at Desk R, in the Subway Level of Charlton building not really knowing what to expect. We were told that radiation would go on as scheduled. I just assumed they know what the plan is. Radiation went fine…I think it took longer to change in to the lovely hospital gown then it did to have the actual radiation.
Here is where the comedy of errors seemed to come in to play. As you can imagine after looking at those Findings and seeing a doctor appointment added to my schedule, I did not sleep well the night before and walking in anxiety was definitely in place.
We first met with the RO’s nurse…and I right away told her that I had a tough weekend after seeing the Findings and then getting an appointment with the RO added to my calendar. The nurse explained that all of the sarcoma team would be going to a sarcoma convention so the RO changed her weekly checkin from Thursday to Monday, so it was just a regular touch base appointment. Would be nice to add a note to the appointment maybe indicating that.
When the RO came in to talk to us, she said she quickly looked at the Findings. Because her Nurse Practioner ordered the PET scan the results were sent to the NP and she was out of the office on Monday so even the doctor did not know that results were in. Doctor said to us “well, you have been through lymphoma before” which we took that they will address that after we get this tumor taken care of. The surgeon will biopsy the one lymph node at the time of surgery. The surgeon had not seen the PET results either so the RO was going to touch base with him to make sure the plan is the same….but then the surgeon is at the same sarcoma convention so it may be a while to hear if he has any concerns. In the meantime, I also put in a message to my Park Nicollet oncologist to ask her to review the Findings and if she agrees with the plan going forward.
It is my impression that the tumor is their top priority now and they have even set the surgery date. That is December 21 and I will be in the hospital 4-5 days!!! Hope Santa knows where to find me. Christmas is my favorite time of the year, and as most people that know me, I put up a lot of decorations and the family all comes over to celebrate….usually on the Eve. Plus I love Christmas music and the church celebrations so it really hit my heart to hear the surgery date. I know, I know, I should feel lucky that they are moving forward with this as quick as they can, and it is treatable, so missing Christmas celebrations is a small thing in the big picture. But it did hit me hard. 😦
Radiation day 2 was today and it went fine. I do notice that the tumor swells up pretty good after radiation…I think a good indication that it is working and that Ted the Tumor is not happy that he is being zapped!
Take Care
Dandy Ventures 