In 2019 diagnosed with bilateral neuroendocrine lung tumors. Had surgeries and diagnoses were well differentiated typical in one lung with DIPNECH, and high Ki-67 (27%) with DIPNECH atypical in other lung. In 2020 a cyst in pelvic area seen in 2019 was finally diagnosed as high grade vascular retroperitoneal leiomyosarcoma. Had surgery Sept/20. Since then no treatment for any of the cancers, just wait n watch. As a kind of final kick in the pants, had an less usual cancer removed from nose in late 2020.It has been tough emotionally dealing with this and with the knowledge that post-surgical treatment can only and hopefully, give a little more time but not cure. Has anyone had to cope with multiple synchronous rare cancers? How did/do you cope? do your specialist cancer teams work cooperatively in your care?
Hello and welcome to the community @GeorgieGirl
You have certainly been through a lot. You may not find someone with multiple rare cancers but you will definitely find members who are doing their best to cope with a cancer diagnosis in general. So much so that we have a forum dedicated to the emotional rollercoaster. You can find that here: https://cancerconnection.ca/discussions/viewcategory/79
The watch and wait approach can sure do a number on our mental health. How are you feeling physically?
Tks for yr welcome. For some weird and truly wonderful reason, I’m doing well physically, apart from minor aches of an aging bod. Have been so fortunate so far but mentally waiting for the next “whack a mole” to poke its head thru the snow…keeping spirits up by munching far too many cookies and other forbidden goodies!
Hello Georgie Girl
i was diagnosed in 2018 with Neuroendocrine cancer in my pancreas. I had the body and tail of pancreas removed as well as my spleen. it was stage 3. I had 4 lymph nodes out of 14 removed that showed the cancer had travelled. I was on watch and wait after surgery. It popped up in my liver and they continued to watch and wait. In February 2020 i was diagnosed with testicular cancer totally unrelated to the neuroendocrine cancer and had surgery that removed the right testicle. it was germ cell cancer stage 1. Dr said very unusual to have two different types of cancer. In Feb 2021 they started liver embolization as it continued to grow. That kept the cancer at bay until now. Now it has progressed to my spine lower back and neck. I just started LU177 PRRT at London Ontario’s Victoria Hospital. I can certainly feel the cancer now in my spine and my mobility has been decreasing. I am a firm believer in keeping going. I still do my hobbies and try and walk at least 10,000 steps a day. All the best in your journey. Neuroendocrine is rare but they are making tremendious advances every day. There is a study going on in the states reight now for Alpha PRRT. Very promising results so far.