Latest PET Results

I've been late in updating my blog with the promised PET results and conversations with my medical team about the results.

First, the results are not great but they are not catastrophic. In summary, all tumors have grown. Voldemort is a little larger than when we first started. The spot on my liver we found January 31 is slightly larger (1.3 instead of 1.1) but nothing to be concerned about. I have a new tumor in a lymph node on my chest. Exactly where, I am not sure. I'm not gonna lie. When I first read the results and re-read the results, I was a pile of mush for a bit. About speaking to my super nurse, I am not happy with the results, but I don't feel I need to get the will updated immediately either. Sigh …. this is my life.

I am not pleased that we are back to square one. I'm told that this is part of MBC. They treat with one protocol until it quits working, then move on to the next. I get that. But what concerns me the most is how do we monitor this stuff going forward? I don't want to be at square one every time a treatment quits working. I want us to make headway in killing these suckers, not lose ground! I know the doctors look for tumor markers in the blood work and perform scans every couple of months. That isn't good enough for me. Why? Because my cancer has NEVER shown up in any of the blood work. Some cancers have more protein or a certain protein in the blood that indicates there is cancer. My cancer does not .... so why use tumor markers (protein in the blood) as a monitoring option for me?

Some day I am going find a good picture of the human body, map out the tumor locations, and update them with red/green arrows as they shrink or grow. 

I go in for blood work this morning to see how I am handling the new treatment and to meet with the PA. I am going to insist that my team find other monitoring options so that we know as soon as a treatment protocol stops working. I think that is a reasonable request.  Update: I brought this up during my appointment today. They agreed with me! Scheduling a baseline ultrasound for as soon as possible, then rinse and repeat every month. This way we shouldn't be starting from scratch when the Ibrance quits working. Whoop!

On a more positive note, the warrior in me is definitely back. There are a lot of things I cannot control, but I will be controlling those things I can … like taking care of my mental health, doing things that feed my soul, look into dietary changes. I am also checking out non-conventional  treatments to use in conjunction with my current treatment. MY goal is to get to NED (no evidence of disease) and stay there for a while. I know I will always have a battle on my hands and I need to remain vigilant. I'm ready! LET'S DO IT!!

Here are the actual PET results:

PET/CT scan

Exam: PET - TUMOR IMAGING W/ CONCURRENT CT, SKULL BASE - MID THIGH Patient: BISHOP, VICKI Exam Date: 02/13/2020 DOB: 12/06/1956 At the Request of: Patient Age: 63 DARREN KOCS MD Patient Sex: F 2410 ROUND ROCK AVE ARA MR #: 2113432 SUITE 150 Exam Status: STAT ROUND ROCK, TX 78681 Accession #: 30465177 PET - TUMOR IMAGING W/ CONCURRENT CT, SKULL BASE - MID THIGH: 2/13/2020 SKULL BASE TO MID THIGH PET/CT - CLINICAL HISTORY: PET is for re-staging left breast cancer.. RADIOPHARMACEUTICAL: 13.3 mCi F-18 FDG was administered intravenously. The blood glucose level was 56 mg/dl. TECHNIQUE: The F-18 FDG injection was followed by an uptake period of 109 minutes. CT was then performed from the skull base through the mid thighs for attenuation correction, followed by positron emission tomography (PET) imaging in the same distribution. PET images were viewed in axial, coronal, and sagittal planes, along with reformatted CT images for anatomic correlation. COMPARISON: 12/02/2019, 10/10/2019. CT chest, abdomen dated 01/31/2020. CT neck dated 01/31/2020, 09/24/2019. CT chest, abdomen and pelvis dated 10/30/2019, 09/26/2013. FINDINGS: NECK: There is a focus of increased activity that corresponds to a focal area of soft tissue within the posterior midline nasopharyngeal mucosal space that is bounded posteriorly by the longus coli muscles. These findings may be related to an inflamed Tornwaldt cyst. Clinical correlation and direct inspection is recommended. For example: *Nasopharyngeal mucosal space lesion: 11 x 11 mm with an SUV max of 6.4. Previously, 11 x 11 mm with an SUV max of 3.6. There is some nonspecific asymmetric activity within the right oropharynx without an anatomical correlate identified. Visualized portions of the brain show normal metabolic activity. Brain parenchyma is normal in appearance. The orbits, intra and extraocular structures are normal. Visualized sinuses are well aerated, with no air fluid levels or abnormal activity. The salivary glands are symmetric, and have physiologic uptake. There is again slight asymmetric activity within the right true vocal cord. Surgically absent. CHEST: There is biapical scarring and small emphysematous cysts within the upper lungs, unchanged. There are again areas of right basilar atelectasis and scarring. There is no new pulmonary nodule, mass or infiltrate. No pleural effusion, pleural mass, or pneumothorax is noted. No abnormal FDG activity is seen in the pleura. There is again nonspecific activity within the proximal third and distal third of the esophagus and a hiatal hernia is present. This may be inflammatory activity. Clinical correlation is recommended. The heart has normal metabolic activity. No evidence of pericardial effusion. Right-sided Port-A-Cath with distal tip unchanged in position. Bilateral breast prostheses, unchanged. Reference background activity (mediastinal blood pool): mean SUV is 2.1. ABDOMEN AND PELVIS: There is a new solitary focus of increased metabolic activity within the right lobe of the liver compatible with hepatic metastatic disease. For example: *Segment IVb lesion: 11 x 13 mm with an SUV max of 16.3. The gallbladder is normal. There are no gallstones. The pancreas is normal in appearance and has physiologic uptake, without mass or inflammatory change. The spleen demonstrates physiologic activity without splenomegaly or mass. The adrenals are normal, and have physiologic uptake. There is atrophy of the left kidney, unchanged. Physiologic FDG excretion is seen in the kidneys. No contour deforming masses, calculi, or hydronephrosis. Normal physiologic activity is seen in the bowel. No evidence of bowel obstruction. The uterus and adnexa are normal in appearance. The bladder is normal. Reference background activity (liver): mean SUV is 2.8. LYMPH NODES: Neck- There are numerous metabolically active left sided cervical lymph nodes that have increased in size, number and activity in the interim. For example: *Left level IIa node: 9 x 15 mm with an SUV max of 9.2. Previously, 8 x 13 mm and an SUV max of 3.4. *Left supraclavicular node: 27 x 32 mm with an SUV max of 14.4. Previously, 25 x 32 mm with an SUV max of 8.9. Chest- There are numerous bilateral metabolically active axillary and internal mammary lymph nodes that have increased in size, number and activity in the interim. In addition, there is a new metabolically active cardiophrenic lymph node. For example: *Left axillary node: 9 x 18 mm with an SUV max of 11.3. Previously, 8 x 13 mm with an SUV max of 4.3. *Right axillary node: 7 x 10 mm with an SUV max of 8.5. Previously, Lymph nodes in the abdomen and pelvis are normal in size and demonstrate no abnormal radiotracer activity. BONES AND SURROUNDING SOFT TISSUES: Physiologic FDG uptake is seen in the bone marrow. Stable 5-6 mm sclerotic lesion within the posterior right T11 pedicle/vertebral body, unchanged. There are no new sclerotic or lytic lesions. PET/CT IMPRESSION: 1. Findings compatible with metastatic adenopathy in the neck and chest that has progressed. 2. Findings compatible with hepatic metastatic disease, as above. 3. Stable appearing sclerotic lesion within the right T11 pedicle/vertebral body. There are no new lesions identified. 4. Nonspecific activity within the posterior midline nasopharyngeal mucosal space, as above. Clinical correlation and direct inspection is recommended.