After the first cardiothoracic surgeon said I had a thymoma and that he may need to do more than one surgery to remove everything, I got an appointment for a second opinion at Mayo Clinic - Phoenix seeing a thoracic surgeon. We discussed the overarching reason for the visit, which was the presumed paraneoplastic retinopathy, two pleural nodules that have increased in size, and a possible thymoma which was active on PET scan. While my outside imaging was loading into the system, he discussed the possibilities. He stated for paraneoplastic syndromes, he almost always recommends the removal of the thymus regardless of thymoma or activity on PET since this often contributes to the issue. Furthermore, he discussed the potential removal of the pleural nodules and what the surgery may entail and based off of the description, that he would likely need to resection the diaphragm.
During this discussion, the images finally loaded and he viewed the oldest CT first and stated their was not a lot of excess tissue at the thymus; however, he then viewed the PET and said there was something going on there and it needed to be removed. He observed that the pleural nodules did not have activity on the PET scan but proceeded to discuss that in paraneoplastic syndromes, this is not unusual. Then reviewing the most recent CT scan from July, he saw the increase in size and immediately stated the nodules needed to be removed.
From there we discussed the actual surgeries which would be a thymectomy (removal of the thymus), wedge resection of the pleural and lung, and resection and reconstruction of the diaphragm. This would be done via VATS (video assisted thorascopic surgery) with three main insertions of the tools and camera with the possibility of two additional insertions depending on how well they can visualize the nerves and vessels. Since my imaging is already four months old, I will be doing a repeat CT scan prior to surgery so they can better visualize the issues prior to surgery. Furthermore, I will have an EKG to monitor my heart, baseline labs, and another appointment with the surgeon to review.
Recovery is expected to be about two weeks to light activity and eight weeks to full activity. Additionally, I won't be able to fly for awhile due to the risk of a collapsed lung (pneumothorax).
Even More Referrals
With my retinal antibodies being associated with cancer and melanoma, my UCLA retinologist and primary care physician both recommended extensive cancer screenings. I was initially referred to oncology, dermatology, and gynecology for additional testing as well as a transvaginal ultrasound and mammogram were ordered. The oncologist recommended treating the eyes and waiting for the cancer to "appear" and then backtracked when she saw the two melanoma antibodies since melanoma can present in unusual ways. She then referred me to gastroenterology and a cardiothoracic surgeon for the lung nodule. Below is a summary of each of the referrals.
During my dermatology appointment, the dermatologist examined my skin looking for any melanoma lesions. Luckily, none were identified; however, he discussed how autoimmune conditions particularly paraneoplastic syndromes, can cause regressed melanoma. Fully regressed melanoma is rare, but some metastatic melanoma (metastatic = spread to another location) do not have a known primary lesion. Ultimately, in regressed melanoma, there was once a skin lesion but the immune system destroyed the lesion so it is no longer apparent, but can spread to another location over time. I was informed to look for any non-healing skin lesions and continue to have appropriate screenings including skin evaluations every year.
During my gynecology appointments, I had a pap smear, review of the transvaginal ultrasound, and an endometrial biopsy. If any of these were abnormal, she was going to schedule a dilation & cuttrage (D&C; deeper biopsy of the tissue) of the endometrium. Luckily, all of biopsy, pap smear, and thickness of the endometrium were all normal so no D&C needed.
My mammogram was uncomfortable but normal. I do have dense breast tissue which means I may be at higher risk for breast cancer in the future so while I wouldn't normally need yearly mammograms until age 45 (optional at 40), I will be having these yearly from here on out.
The gastroentrology (gut doctor) appointment was more precautionary than anything. I have celiac disease so I am at higher risk for colon cancer; however, I have no symptoms and my CT scan of the abdomen in December of 2019 had no abnormalities. Nonetheless, they decided to order an endoscopy (scope of the throat to stomach to small intestine and a colonoscopy to be cautious and to rule out another possibility. This is scheduled for next week.
The final consult was the cardiothoracic surgeon who needed all previous imaging of my chest. I ordered CDs of the images to take with me and when they arrived, I read the most recent CT of my chest from July 2020 and my one lung nodule denoted in December 2019, was actually two and the second one had nearly doubled in size and the other larger of the two had grown as well. Interestingly, when I saw the pulmonologist in July, it was verbally stated that the nodule was the same. When I saw the cardiothoracic surgeon, he additionally thought I had a thymoma (tumor of the thymus), which when looking at the PET scan there was some uptake in the thymus. He thought I may need two surgeries, one to remove the pleural nodules and resection the diaphragm and one to remove the thymus. I scheduled the surgery for the next week but once I got home, I had second thoughts especially considering two potential surgeries with some complexity to each of them so I put that surgery on hold and got a referral to Mayo clinic in Phoenix. Furthermore, we reached out to radiology to re-read the CT chest since there was question of a thymoma. The radiologist stated that there was some extra tissue but no thymoma and that the pleural nodules looked as though it was my liver in consistency so potential of a diaphragm hernia.
Next post will discuss the thoracic surgeon consult at Mayo clinic.
Describing vision loss from my perspective. Providing basic information about eye disorders & diagnostics.