Part 1
All started with a “suspected” gall bladder attack in October 2020 whilst on a bushwalk. Went to Casualty in a regional NSW HOSPITAL, had heavy painkillers and discharged late atnight. Next day returned for ultrasound. View was small stones / deposits passing in gall bladder. Month later (Nov) my GP suggest a CT scan of area as he was concerned that area is the “intersection” of lots of things and it looked out of character given my usual good health. CT showed a growth / cancer on pancreas. Scheduled for a biopsy under ultrasound as tricky procedure in that location to get a biopsy sample taken. NET confirmed mid-November 2020. I went and saw Cancer clinic in regional hospital early December. Oncologist was not happy with me retaining my gall bladder. He sent me to see a surgeon for an operation to remove gall bladder. Saw surgeon in February who did not see sufficient justification at that time for me to beoperated upon. The surgeon also realized we had not been advised of test results, proposed treatment plan or how widely cancer was spread or growing. A terse call to Director of Cancer Clinic at regional hospital was made by the surgeon about total lack of information provided to me for basically two months. Cancer clinic responded that afternoon. Appointment straight away with oncologist who suggested Sandostatin as recommend treatment and watch and wait approach. I was asymptomatic ie had no real symptoms at that time. Having found out about NECA, we spoke with the net nurse about our situation. A second opinion was suggested to us by the NET Nurse as we discussed our concern regarding the local oncologist who was not a good fit with us.
Arranged a second opinion via a private consultation with a NET specialist in Sydney February 2021. Further scans confirmed lots of metastases in lymph glands in abdomen & neck so totally inoperable as cancer widespread. It was confirmed my primary cancer was on pancreas and it was a 2nd grade nonfunctioning NET.
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Now we know! WHAT WE WERE SLOW TO LEARN AS BASICALLY STILL IN SHOCK & TAKING IT ALL IN is that you have to advocate for answers, options and treatment plans. This is where
NECA is so useful.
What made things difficult and confusing for us was initial diagnosis and preliminary tests were undertaken prior to Christmas, with information vacuum for many weeks. The NECA organisation is an unbelievable resource available to us, also providing an excellent sounding board on the Facebook page. Lesson learned, if you are not being advised of test.
results in a timely manner get your local GP to chase for results. Anyway, I was advised that it was possible to be a public patient at RNS under the same oncologist. Once I settled into the routine of monthly injections of Sandostatin and 6 monthly scans to monitor things, I felt like I was on a solid footing. At the May 2022 consultation with the oncologist, it was stated my NETs were revving up on my pancreas and a new one was showing up on my sternum. This news was a big shock as I thought the monthly injections were minimising symptoms and suppressing NETS. This is apparently not that an uncommon an event from discussion on the NETS Facebook support group. So not uncharted territory. The oncologist recommended a more aggressive treatment.
plan known as PRRT or Lutate therapy. Part of this treatment protocol is taking a chemotherapy drug called Capecitabine. This drug has a number of known unpleasant side effects. In round 3
and 4 of the treatment, the side effects of the Capecitabine were such that I had to stop prior to completing the full cycle. This was upsetting as I wanted to have as strong a treatment as
possible to give as good an outcome as possible. However, the neuropathy on my feet was just too serious.
Because I trusted of my oncologist & the support team, I began the treatment plan with confidence. Whilst nervous I was mentally relaxed because if the team thought it was the way to
go then a second opinion was not needed. The treatment runs for basically 6 months so once again a Christmas intersection. Could not believe it. One thing that complicates long running treatment plans is making sure you don’t get Covid and have to reschedule a treatment. Diligent care of social interaction several weeks prior to each treatment is mandatory and logical so your schedule is not interrupted.
Part 2
There were many trips to Sydney as preliminary tests were required prior to the Lutate therapy. The support and opportunity to chat with others who have had this treatment on the Facebook
support group was a great opportunity and settling. In late February 2023, I finished the Lutate treatment & had the assessment scan just prior to Easter. Fingers & other appendages crossed for consultation regarding results two days after scan. Oncologist says very happy with results. Walked out feet barely touching the ground.
Part 3
In early August 2023 is a follow up scan to see if the treatment is still holding the NETS in remission. This is an important scan and I’m understandably keyed up about the results of this scan. In the NECA group it is known as “scan stress”. So once again fingers and other appendages crossed for a favourable result.
Summary to date.
Friends and family look at me and say and think I must be cured as I look so well post Lutate. It has taken some character building to understand from the start that I have inoperable cancer in
terms of resolution. I still basically have no symptoms from the NETS so remain on the lowest dose for Sandostatin monthly injections. Just recently I have got a referral to see a psychologist under the new Medicare Mental Health Treatment Plan (MHTP) guidelines. It was suggested to me that it would be worthwhile given the changes to my life due to NETS and particularly post Lutate therapy. My wife has been a passenger with me on the cancer bus and helped with dealing with the ups and downs of this disease. The suggestion came as a surprise just like when I was told I needed to have Lutate therapy. I thought I was travelling OK. Logically it makes sense to seek help in how we process dramatic changes in life. To not acknowledge that such events don’t affect us is naive. I am keen to receive any help which will make life going forward better for me and those around me.
NECA is an amazing organisation and supports us all incredibly well. On a personal note, I have chosen to donate to NECA. Finally, I think positivity is important. An often-used term in our group, NEGU (Never Ever Give Up) is appropriate. I am focused on being as active as possible. My oncologist recommends being as active as I can be for mental stability and to help deal with treatment. To that end, I do Pilates twice a week, NIA another exercise program two days a week (NIA is also mentally calming as that is part of its philosophies). Also, I have a labour-intensive garden with veggie patches and when possible, I go fishing from my tinny. I am a member of Slow Food South Coast and secretary of the Slow Wine subgroup. Also, member and tardy contributor to local ceramics group and a passionate chef. My other passion is scuba diving and underwater photography. This has been on hold for a few years due to Covid bush fires and NETS. Recently cleared to go diving again so tropical dive trip in September all booked. Second dive trip booked in February 2024. Got some catching up to do while I can. That is the thing. At some point probably soonish (hey I’m turning 70 in September) diving will be limited and not just because of NETS. Yes, my days do go by quickly.
One important thing I’ve learned particularly post Lutate treatment is, if I feel flat then I slow down and chill out for a bit. The odd afternoon snooze sure is an appreciated activity.
The axiom I live by these days is get out and get into it!
