NETs: Competing Pathologies--how to sort it all out?

What was Mayo’s prognosis? I’m on my 3rd hospital, fist 2 wrote me off last year. If it was me I’d go to Mayo, I’m in Boston so I go to Dana Farber but Mayo has a lot of specialists who specialize in these cancers.

Good luck

Jump to this post

Thank you! It's been like a story with different points of view. The radiation oncologist has been the best doc so far--informative, and not too authoritarian. Millennials are old enough now to be specialists--and I find they can be more collaborative than older doctors. So this doctor feels I'm high risk (for recurrence, metastasis) but still worth treating as possibly curative. So I'll be doing a course of radiation--3 weeks--aimed in part at a lymph node with cancer that is hard to reach surgically. Then I'll pretty much be done for good with medical interventions except for AI. I'm guessing a recurrence will send me to palliative care or hospice rather than treatments. Basically I'm not doing anything I find too troublesome nor desperately trying to fight cancer but attempting to be myself and live a full life while I'm on earth.
All best to you. These boards are a great support.

Jump to this post

Wow--thanks for asking!
On a practical level, radiation will be done at my local regional cancer center.
When I was 21 (and kind of a goof ball when it came to actual adult life) I had swine flu, pleurisy, empyema, and ended up in the ICU in Boston's Beth Israel for about 6 weeks. My poor parents were told I'd die. But an enterprising surgeon performed a thoracotomy cut and put me on antibiotics. By a miracle I lived--although hospitalized for many more months. This was in the 1970's--no respirator, no port, just an oxygen mask, pulmonary therapy by hand, and an IV hook up for 3+ months. This changed me forever. I became hyper aware of mortality. Sometimes I felt very alone--my concerns were different than my peers--but I kind of went on a lifelong quest to understand what it means to truly experience things. I dropped out of grad school, went to San Francisco, and married a man who was a Zen Buddhist priest, living in monasteries from time to time. He died at the age of 36 from an auto-immune disease. Paradoxically, at that point I really began to embrace life. I was raising our small daughter alone, and was re-united with my high school boyfriend, my first love. We've been married 25 years. I threw myself into the family, my work as a teacher and writer, exploring spirituality, and yes--fun fun fun. Which for me can be very simple, like gardening. Or very large, like philanthropy. I was disabled by the swine flu--chronic pain, weakness on right side, loss of lung capacity. So I learned to ONLY do what I care about. I've never had a television, for example. I worked for several decades at a local college and I'd try to make every day a little adventure, get to know everyone on campus, take little walks throughout the day...it worked well. So now at the age of 68 I have an entire lifetime built on accepting mortality, and managing physical problems. My spirituality is a combo of re-discovered Judaism and Buddhism--but frankly I think any approach would work. We live very simply--one car, mostly vegetarian, and I don't have a cell phone. I really care about my friends, grand daughter aged 4, my daughter's family. When I do 3 weeks of radiation I told my husband I want to hear live music every week and have a creative project around the experience. I've been beyond fortunate to understand time is limited. Thank you again--sorry for the length--just kept typing!

Jump to this post

Wow--thanks for asking!
On a practical level, radiation will be done at my local regional cancer center.
When I was 21 (and kind of a goof ball when it came to actual adult life) I had swine flu, pleurisy, empyema, and ended up in the ICU in Boston's Beth Israel for about 6 weeks. My poor parents were told I'd die. But an enterprising surgeon performed a thoracotomy cut and put me on antibiotics. By a miracle I lived--although hospitalized for many more months. This was in the 1970's--no respirator, no port, just an oxygen mask, pulmonary therapy by hand, and an IV hook up for 3+ months. This changed me forever. I became hyper aware of mortality. Sometimes I felt very alone--my concerns were different than my peers--but I kind of went on a lifelong quest to understand what it means to truly experience things. I dropped out of grad school, went to San Francisco, and married a man who was a Zen Buddhist priest, living in monasteries from time to time. He died at the age of 36 from an auto-immune disease. Paradoxically, at that point I really began to embrace life. I was raising our small daughter alone, and was re-united with my high school boyfriend, my first love. We've been married 25 years. I threw myself into the family, my work as a teacher and writer, exploring spirituality, and yes--fun fun fun. Which for me can be very simple, like gardening. Or very large, like philanthropy. I was disabled by the swine flu--chronic pain, weakness on right side, loss of lung capacity. So I learned to ONLY do what I care about. I've never had a television, for example. I worked for several decades at a local college and I'd try to make every day a little adventure, get to know everyone on campus, take little walks throughout the day...it worked well. So now at the age of 68 I have an entire lifetime built on accepting mortality, and managing physical problems. My spirituality is a combo of re-discovered Judaism and Buddhism--but frankly I think any approach would work. We live very simply--one car, mostly vegetarian, and I don't have a cell phone. I really care about my friends, grand daughter aged 4, my daughter's family. When I do 3 weeks of radiation I told my husband I want to hear live music every week and have a creative project around the experience. I've been beyond fortunate to understand time is limited. Thank you again--sorry for the length--just kept typing!

Jump to this post

Wow hats off to you on your journey what an experience you learned from and handled so well! I have lungnet to liver with growth in liver mets but my lung nets are barely expressing. Also have Dipnech which are multiple net cells like a string of pearls in my lungs which may be the culprit here. Hard to figure but am having radioembolization hopefully to work on my liver. Hours of research appear to indicate we can have two kinds of cancers at once possibly. Definitely see a specialist that listens . There is hope as both breast cancer and nets can be manageable. You have a great attitude and much to cherish. Best of luck to you on this journey. Medicine is an art that uses science.

Jump to this post