4/4/22 ER found large mediastinal mass via CT with contrast “A massive area of adenopathy in the subcaranial region that means urges 11.3x6.1x7.7cm with lung consolidation” and pleural effusion - right lobe
Mom was in decent health prior with no oxygen requirement and some health issues related to emphysema/COPD, as well as hemochromatosis. 50 year history of smoking ciggarettes and stopped 3/4/2022. Social drinking only.
Transferred to Shands UF Gainesville same date and has been inpatient to date.
During the first week a thoracentesis was performed from right lobe removing 850cc of fluid. Subsequently last week another was perform removing 250cc of fluid. We have been advised cytology revealed no malignancy identified. I was advised lymphocytes in PE fluid.
4/8/22 bronchoscopy performed. We have not received Next Generation testing results of bio markers to date but the mass was identified as adenocarcinoma.
Has been deemed non operable including placing stint.
Since admission Fio2 High oxygen and have been weaning down. 4/23/22 now on regular oxygen nasal candela.
In the past week there has been a productions cough of pink/brown secretions
Last week the doctors advised that a PET scan could not be completed inpatient and that they would need to complete a CT with contrast of brain and abdomen/pelvis to rule out metastasis. No signs of metastisis. Could not perform MRI due to patient not being able to lay flat during procedure as they are only able to sit 45 degree due to respiratory concerns,.
Nebuilzer treatments being given every 4 hours.
No evidence of infection except the second fluid test showed Coagulase-negative staphylococci
And infectious disease treating with antibiotics of Doxycycline.
Last CT 9/2020 low does lung screening showed no signs of mass.
Request for inpatient transfer to Moffitt Cancer Center declined by receiving facility.
As of 4/22/22 WBC dropped to 1 and was advised likely due to Chemotherapy given of Carbotaxo - Carboplatin and Paclitaxal and was advised another treatment in 3 weeks. This was attempt to reduce the mass.
We were advised a wait and see approach in effort to discharge and receive curative treatment as outpatient.
The Tumor Board met 4/21/22 and advised cT4N2M1a (IVA).
The board consensus recommends palliative radiation inpatient and palliative chemotherapy as well as monitor Pleural Effusion for possible
PleurX if needed. The board noted “The present and/or facilitating providers acknowledge that the radiographic and/or clinical information available at the time of the tumor board review may be incomplete. Thus, it is recommended that clinico-radiographic correlation be performed by the patient's continuity provider(s).”. I mention is because the Radiation report originally from when the study was read did not mention the additional mass which I was told was something like either floating in PE or near PE.
I am unclear if this could be an error and if there is no secondary mass we could still move forward with curative treatment since I have been advised if we do 5 doses of large radiation this will be maximum lifetime does and palliative closing the door to any other radiation treatment.
I can not get a second opinion because she is inpatient and I can not collect the records and disks. I am fighting to save my moms life and unsure if I should work on getting her released (concerns about immunity, current condition, she really can’t move too much or walk many steps….) or if I should accept their treatment plan or if there are any questions I should be asking.
If this was your mom, what would you do?
Sun, 04/24/2022 - 08:41
Hi and welcome to Grace. I'm so sorry about your mom's situation, it's very complicated and not at all reasonable for us to comment on all that is being taken into account for the treatment recommendations by her team.
With that said, to withstand curative treatment or most any anti-cancer treatment the person getting treatment needs to be in good enough shape to get it.
Shands is a large comprehensive center and the fact that they want to keep her there and try to stabilize her isn't a bad thing. Moffit likely doesn't want to move her because she isn't stable, but you'd need to ask them.
The best way to make comprehensive decisions is through a tumor board which she has.
One possibility is to let them continue to stabilize your mom and wait for the genetic tests to complete. Is she receiving care that keeps her comfier there than at home? Where/what is the best care path to get her healthy enough to receive anti-cancer treatment? Are caregivers responding to your mom immediate needs?
I can ask questions all day so hope this is helpful. I know you feel like you're out there by yourself so ask questions.