(Editor’s Note: This is the first of two parts of a piece Beth R. McGivern has written about her NET cancer experience. In this section, she talks about her diagnosis and her experience with the new Gallium-68 scan that is nearing the end of trials in the US. In the second part, she talks about her surgery and the drug trials she is now considering. That piece will run here the end of next week.)
by Beth R. McGivern
Discovery and questions
In 2010, I was diagnosed with widely metastatic disease with tumors all over my abdominal and pelvic area, the largest being a 12x10x8 cm tumor hanging from my liver. Surprisingly, there were only a few very small tumors in my liver.
…the expert opinions were so divided as to what I should do.
My first specialist started me on monthly Sandostatin injections but did not believe I should have surgery. I then had another specialist review my case through a second opinion service sponsored by my employer. This doctor also did not believe I should have surgery.
Scanning options
I was quite dissatisfied with my first specialist so I changed to another doctor and they suggested that I have an octreoscan, which I had never done. I had heard that there was a better scan called a Gallium 68 PET (68-GA) that was much better at detecting tumors than the octreoscan. This doctor thought I should have a de-bulking surgery and the octreoscan would help define my tumor load and surgical plan.
My first specialist started me on monthly Sandostatin...
The FDA has not approved the 68-GA PET as a diagnostic test in the US at this point. At the time of my investigation, the closest place to get into a clinical trial for a 68-GA PET was at Vanderbilt University in Nashville, TN. The problem with the clinical trial was that it would not be covered by standard medical insurance.
Goals and fears
The goals of this test were 1) to get an accurate idea of my tumor load, 2) to see if I had the receptors that would make some of the radiopeptide therapies available in Europe a treatment option for me and 3) to get another opinion about how I should treat my disease.
The FDA has not approved the 68-GA PET as a diagnostic test…
In July 2012, I had my appointment with Dr. Eric Liu, followed by my scheduled 68GA PET scan. This was my first scan other than a CT. I was nervous about being injected with a radioactive tracer–it just sounds a bit scary.
Last in line
Dr. Liu was very articulate and professional and spent a lot of time with me. I was very impressed with my experience at Vanderbilt-Ingram Cancer Center. Dr. Liu talked about my experience to date to gather some history. He said the 68GA PET scan would answer two questions: 1) Do I have appropriate receptors for the scan to work? 2) What is the extent and location of my disease?
…it just sounds a bit scary.
The doctor said I was the last of the 50 patients that were in this clinical trial. He also mentioned, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US. This cost was explained to me up front before my appointment, so there was no surprise here.
Pre-test procedure
Dr. Liu said the injection should not hurt or cause any side effects–but an EKG was required before and after the scan. He assured me the radioactive tracer has a very short half-life and that I would be fine going through airport security the next day. We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.
…I was the last of the 50 patients…
The prep for the scan included the EKG and the 68GA injection. Then I drank the same large container of barium contrast that I have had for all my CT scans. This process took about an hour. The injection did not sting, burn or cause any adverse consequences.
The scan experience
The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes. The machine does not tell you to breathe in and out like the CT scanner does.
The injection did not sting…
Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move. Dr. Liu came into the room while the scan was going on. This surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.
Scan results
After the scan was over I went for the second EKG and then to lunch.
It was a nice pep talk.
Later in the afternoon, we met again with Dr. Liu. He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease there is no evidence of metastatic disease outside of the abdomen/pelvis.
Surgical questions
With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the 68GA scan on the computer screen. It was quite amazing, though I had no idea what we were looking at. The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe.
…I was positive for the receptors…
The largest tumor hanging from my liver would most probably cause a bowel obstruction should it grow. There was also, they said, multifocal small bowel disease. That is where the primary tumor is located.
More surgical questions
Dr Liu said that he definitely thought that this was resectible because all of the tumors are in the abdomen and pelvis, i.e., not bone, brain or other mets. Surgery, although not curative, would mean that I would most likely die of something else other than carcinoid cancer. He described the surgery as major– probably six hours in the operating room with a 6-8 week recovery period.
…I had very low liver involvement…
Dr. Liu was the third carcinoid specialist that I had seen. Two had recommended taking Sandostatin and “watch and wait.” I took Dr. Liu’s surgical recommendation lightly as he is a surgeon and they usually recommend surgery.
Looking for answers
I was seeing another specialist in New York who was also recommending surgery and putting some pressure on me to do this, but I was uncomfortable because the doctor was not being clear as to what the surgery would entail or the rationale for it. Also, I was not comfortable with a giant abdominal surgery when I had no symptoms and the expert opinions were so divided as to what I should do.
He described the surgery as major…
At this point, I had two opinions for surgery and two for watch-and-wait. Later in 2012, I went to a conference sponsored by the New England Carcinoid Connection support group in Boston and heard some of the doctors from the Dana-Farber Cancer Institute speak. I thought they were more conservative and concerned with quality of life issues than most of the other doctors I had been to. I decided to get my fifth opinion there and that would break the surgery-or-watch-and-wait tie that I was in.
(Editor’s Note: Beth R. McGivern is a member of our NETwalkers Alliance Boston Marathon Jimmy Fund Walk team. You can make a donation to her Walk effort here.)
So, what did you decide? Surgery or something else? Perhaps you know there is NO standard of care hot NET in the US. Every speciality has his or her own preference on ways to treat the 65 or so variations of our genomic mutation but most agree surgery to the extent possible adds quality years to NET patients’ lives. Do you really want to wait until you have more tumor burden?
Lucy Wiley 06 mid-gut, ileum, mesentery, mediastinum, rectum , ovary, lymph nodes in the chest and abdomen. Stage IV. Tx incl: debulking surgery, PRRT, two liver ablations, octreotide acetate via pump. Pretty good QOL st. 70 yrs .
That decision is recounted in Part 2, which is coming this weekend.
thanks Harry and Beth. I liked the statement “….he is a surgeon and they usually recommend surgery”. That is an important point when dealing with a surgeon.