"Enjoyed" might not be the right word, but it was fascinating to hear about the post-op/treatment complications of their cancer. And Yvonne has a great set up for a book/movie. The chef who lost the thing she loved the most!
Funny you should say that Elliott - I am doing final edits on my book now. It's not so much a memoir but part story and part (mostly) helping others to undertand how to transition off a PEG tube back to oral eating How hard can it be? Turns out not that easy. So the Speechies, care givers, dietitians out there and others who need some systemised help - I hear you and I wrote and systemised a process I wish I had. You can sign up to my website to be notified when it is published. Via my website that Stacy mentioned 🧡😉
I had Hodgkin's Lymphoma in 1987 with all of the terrible diagnostic processes that were available at the time, including a laparotomy with splenectomy. Yay, for the invention of PET scans for today's patients! I was treated with full mantle radiation. ( 40 Gy.). Subsequently, I've lived through Graves disease w/ TED that required radiation to the eye orbits (18Gy), TNBC (Taxol, carboplatin, BMX), COPD and Radiation Induced heart valve disease. Dr's are currently watching the growth or lack there of 3+ lung nodules, when to have replacement valve surgery and bone and soft tissue resorbtion of my right zygomatic arch and temporal which includes the eyebrow ridge of my face. Would I have radiation again? At 23 with two small children, yes, of course. Now, no! When I finished treatment and recovered I thought I was done, life would go back to what it was. Then every time I relaxed a new medical issue arose. I feel somewhat betrayed by my radiation oncologist for not being up front with me about the potential late effects. At the very least I should have been warned to find a knowledgable internist and be followed on a regular basis forever. Even now, patrients are given a list of potential side effects from the treatment but no one talks about 3, 5, 10, 20, 30 years later. Except for my face melting and the impending heart surgery life is chugging along. Medically speaking, it has not been a good life.
Such great points. There is so little training for oncologists on long term complications let alone how to manage them which is a huge disservice to patients.
The German Hodgkin's Disease group has done the hard work of de-escalation for Hodgkin's Disease so now some patients get only 2 cycles of (relatively) mild chemo and no radiation. They should be commended for their work but it doesn't make up for your life spent dealing with the consequences of our treatment.
You are not alone and I wish we had a better way to keep track of all of you. My friend Erin Cummings runs Hodgin's Internation which connects, educates and lobbies for increased resources for long term HD survivors. It's a great group.
"But right now, I wouldn’t have that choice. It would be considered unethical to even discuss it."
Could you elaborate on this? Are you saying it is unethical to do a study to ask these questions or you can't ethically discuss the treatment tradeoffs one-on-one with a cancer patient in your clinic?
Hmmm. I'm not sure where in the episode you heard this.
Right now, because of the randomized trial result that Dr. Chera discussed, de-escalation of radiation dose to 60 Gy instead of 70Gy is not considered standard of care. I would not offer that option to patients outside a clinical trial.
If my clinic was participating in the current trial that Dr. Chera is leading, I would absolutely discuss enrollment with patients.
Hope that answers your question. Thanks for listening and commenting.
Sorry the quote was from the article not the podcast:
"Would I, for example, be willing to sacrifice a 5% increase in the chance my cancer would return if I had a better chance of being able to taste food for the rest of my life? Perhaps. But right now, I wouldn’t have that choice. It would be considered unethical to even discuss it."
Your response above answered my question. Thanks for clarifying. I think some patients are more comfortable reading about treatments on the internet due to restrictions on doctors to discuss options. I think most of these communication restrictions are simply time constraints but it is interesting that ethics might also be having an effect as well. I need to think it through some more.
"Enjoyed" might not be the right word, but it was fascinating to hear about the post-op/treatment complications of their cancer. And Yvonne has a great set up for a book/movie. The chef who lost the thing she loved the most!
Funny you should say that Elliott - I am doing final edits on my book now. It's not so much a memoir but part story and part (mostly) helping others to undertand how to transition off a PEG tube back to oral eating How hard can it be? Turns out not that easy. So the Speechies, care givers, dietitians out there and others who need some systemised help - I hear you and I wrote and systemised a process I wish I had. You can sign up to my website to be notified when it is published. Via my website that Stacy mentioned 🧡😉
I had Hodgkin's Lymphoma in 1987 with all of the terrible diagnostic processes that were available at the time, including a laparotomy with splenectomy. Yay, for the invention of PET scans for today's patients! I was treated with full mantle radiation. ( 40 Gy.). Subsequently, I've lived through Graves disease w/ TED that required radiation to the eye orbits (18Gy), TNBC (Taxol, carboplatin, BMX), COPD and Radiation Induced heart valve disease. Dr's are currently watching the growth or lack there of 3+ lung nodules, when to have replacement valve surgery and bone and soft tissue resorbtion of my right zygomatic arch and temporal which includes the eyebrow ridge of my face. Would I have radiation again? At 23 with two small children, yes, of course. Now, no! When I finished treatment and recovered I thought I was done, life would go back to what it was. Then every time I relaxed a new medical issue arose. I feel somewhat betrayed by my radiation oncologist for not being up front with me about the potential late effects. At the very least I should have been warned to find a knowledgable internist and be followed on a regular basis forever. Even now, patrients are given a list of potential side effects from the treatment but no one talks about 3, 5, 10, 20, 30 years later. Except for my face melting and the impending heart surgery life is chugging along. Medically speaking, it has not been a good life.
Such great points. There is so little training for oncologists on long term complications let alone how to manage them which is a huge disservice to patients.
The German Hodgkin's Disease group has done the hard work of de-escalation for Hodgkin's Disease so now some patients get only 2 cycles of (relatively) mild chemo and no radiation. They should be commended for their work but it doesn't make up for your life spent dealing with the consequences of our treatment.
You are not alone and I wish we had a better way to keep track of all of you. My friend Erin Cummings runs Hodgin's Internation which connects, educates and lobbies for increased resources for long term HD survivors. It's a great group.
"But right now, I wouldn’t have that choice. It would be considered unethical to even discuss it."
Could you elaborate on this? Are you saying it is unethical to do a study to ask these questions or you can't ethically discuss the treatment tradeoffs one-on-one with a cancer patient in your clinic?
Hmmm. I'm not sure where in the episode you heard this.
Right now, because of the randomized trial result that Dr. Chera discussed, de-escalation of radiation dose to 60 Gy instead of 70Gy is not considered standard of care. I would not offer that option to patients outside a clinical trial.
If my clinic was participating in the current trial that Dr. Chera is leading, I would absolutely discuss enrollment with patients.
Hope that answers your question. Thanks for listening and commenting.
Sorry the quote was from the article not the podcast:
"Would I, for example, be willing to sacrifice a 5% increase in the chance my cancer would return if I had a better chance of being able to taste food for the rest of my life? Perhaps. But right now, I wouldn’t have that choice. It would be considered unethical to even discuss it."
Your response above answered my question. Thanks for clarifying. I think some patients are more comfortable reading about treatments on the internet due to restrictions on doctors to discuss options. I think most of these communication restrictions are simply time constraints but it is interesting that ethics might also be having an effect as well. I need to think it through some more.