Lovely to hear from you and very kind of you to offer support to others affected by neuroendocrine tumours. If I see anyone on Cancer Chat looking to connect with others affected by NETS, I will certainly think of you! I also noticed that you posted recently on this thread offering to help others and I am sure you will be pleased to hear that you received quite a few replies from members affected by NETS so have a look on your other thread and feel free to respond if you wish.
Hi Andy. I would love to hear from you. My dad has recently been diagnosed with neuroendocrine cancer following removal of a lump in his chest which was secondary. All his scans have come back clear, bloods, hormones and he’s now being sent for a gallum scan as they can’t find the primary. The professor has said he is a very very rare case. The last few months have been horrendous with all these scans and tests and the worry and we are finding it very difficult at the moment to cope. Hearing from someone who has been through this would be such a great help and very much appreciated.
Firstly my best wishes to you and your Dad. The e-mail went into the wrong box and initially missed it. Please do not hesitate to ask me questions i have a wealth of experience on NETS. I good piece of advice is to locate Proffessor Caplin on you tube he is the Oracle and some great information. Also, NET PATIENT FOUNDATION what they dont tell you is not worth knowing. They have been great with me over 15 years..
1. What is the biggest challenge to achieving "best possible care" in your experience?
NET Cancer is an extremely hard cancer to treat due to the wide range of symptoms and where it is situated. There is not enough training to GPs and oncology doctors about NETs. We need more awareness and more specialists on NETs. Another challenge is getting funding for treatment.
What has given you inspiration?
Despite my very poor health I was amazingly accepted for the PRRT Y90 DOTATATE therapy treatment by a doctor who is one of my many heroes. The procedure involves receiving an infusion of the hormone octreotide linked to radioactive Yttrium-90. Nothing really happened for the next week apart from me being tired, but I suffered no real side effects. Within a week and without any warning I started to feel subtle changes and the benefits of the treatment. It was life changing because suddenly I could join in conversations and my coordination came back so I could walk my Golden Retriever dog. The change was unbelievable, and people started to comment on how well and coordinated I had become. I can recognize names and faces again. I am also more tolerant with family and friends. My family and myself have recognized a massive change in my overall health and the fact that they are able to perform less tasks on my behalf. The health benefits have been terrific and unbelievable. I feel like person given another chance in life.
What have you learned that needs to be shared?
By no means has this been an easy time for myself and my family who have also been affected by this nasty horrible cancer that grows anywhere in the body over time and mimics other illnesses such as IBS, etc. I must be realistic and not selfish and realize I cannot do everything I want anymore. I am still training at my local gym to keep exercising as I believe that a healthy lifestyle helps cope mentally and physically with the situation. Counsellors helped me to deal with all the medical, appointments, admissions and new medications. Counselling has helped me be kind to my family and to cope with my day to day life and mental state. This is not proving very easy at present as I have massive personal mood swings.
I have luckily and fortunately had the right people at the right time. I believe that this is paramount for anybody suffering from a NET to get referred to a NET specialist as soon as possible after diagnosis to give you a much better chance of survival. I know that this is not always the case, but if you can, get a doctor who puts you straight to a NET Specialist as close to your home as possible. It bears no negative reflection on your Doctor but a NET Doctor knows the complexity and generally knows a lot more of this rare and nasty cancer and treatments.
Hi Andy, they suspect that the lump on my mesentery is a NET. Does this mean it's cancer? I'm being sent for more tests - blood and urine to confirm it's a NET, but i really feel in the dark as I haven't actually spoken with the MDT yet, but they've asked for this test plus an additional ct scan which i have now had.
Firstly I am so sorry for my very late reply I have only just seen your message that you sent last year! Thank you for the information and I hope you are doing well?
My dad is doing great he had the humour removed from his chest which was secondary and then he had so many scans done and was sent to London for a Gallum 68 scan all of which came back clear as did his bloods and hormone tests. The drs are baffled by him, they said that very rarely a persons own immune system can kill off the primary but no-one knows what's happened. He is being monitored and goes again in June for another scan. But he's in great health, looks very well and we are just praying everything stays clear. The professor, consultants and drs have all been amazing, we couldn't have asked for more from everyone that has been involved with my dads journey. Last year was the most awful time, physically and mentally, I can't imagine how hard it is for you and family to have had to deal with this for so long.
Hi again andy I left amessage on one of your other posts
I was being sent for tektotryd Scan, someon on another site has said that these are useless and I shoudl take my waiting time to research and "demand" other tersts . Surely the NETS team will know what tests I need. Its a scary time. I try not to associate other up to now insignificant aches and pains with my new diagnosis. Difficult some days when your in the dark and have no information only my biopsy of a small enlarged lymph node is Neuroendochrine, it may be my primary or not and my primary could be anywhere
