I'm not certain that I was or wasn't told that, I'm sure I only catch half or less of what I'm told.
I forgot to answer a question in your first set. - How was it found, my first time out I had gone in because I didn't have the energy to get to my 2nd job so instead I went to the urgent care clinic. The physician ordered an x-ray and found a spot. I had influenza B so he felt it was probably due to that, but asked me to get a re-check in a couple weeks. It was still there and the story began.....
I'm not certain that I was or wasn't told that, I'm sure I only catch half or less of what I'm told.
I forgot to answer a question in your first set. - How was it found, my first time out I had gone in because I didn't have the energy to get to my 2nd job so instead I went to the urgent care clinic. The physician ordered an x-ray and found a spot. I had influenza B so he felt it was probably due to that, but asked me to get a re-check in a couple weeks. It was still there and the story began.....
@cindyjk - I think that it is extremely important to have someone with you to make sure that everything that is said about your care is noted. And also to get copies of all the radiologist's reports, lab work, etc. This way you can learn more about your illness and why it's being treated the way it is. Also, if you disagree with anything you can bring it up or use the patient portal to begin discussions.
Hello all,
Was just informed my lung cancer has spread to Liver and T7 to T4 vertebra. Diagnosis is Metastatic neuroendocrine tumor. I was seeing Duke until this Tuesday when I switched to Mayo Clinic Jacksonville. My first visit is 8/24. Looking forward to getting a plan together. I left previous Dr. because he was tone deaf to my needs and desires. I do not do well on opioids and even with my paid being pretty strong I have learned to tolerate it and keep it in check with ice packs, heating pads, and estim.
I am just looking for a Dr. who is willing to fight as hard as I am. Will post updates as I move along this path.
Hello all,
Was just informed my lung cancer has spread to Liver and T7 to T4 vertebra. Diagnosis is Metastatic neuroendocrine tumor. I was seeing Duke until this Tuesday when I switched to Mayo Clinic Jacksonville. My first visit is 8/24. Looking forward to getting a plan together. I left previous Dr. because he was tone deaf to my needs and desires. I do not do well on opioids and even with my paid being pretty strong I have learned to tolerate it and keep it in check with ice packs, heating pads, and estim.
I am just looking for a Dr. who is willing to fight as hard as I am. Will post updates as I move along this path.
Good luck to you. I see an oncologist in Phoenix, but I’m only stage 1B. Taking Tagrisso. I will be interested in your experiences at Mayo Jacksonville.
Hello all,
Was just informed my lung cancer has spread to Liver and T7 to T4 vertebra. Diagnosis is Metastatic neuroendocrine tumor. I was seeing Duke until this Tuesday when I switched to Mayo Clinic Jacksonville. My first visit is 8/24. Looking forward to getting a plan together. I left previous Dr. because he was tone deaf to my needs and desires. I do not do well on opioids and even with my paid being pretty strong I have learned to tolerate it and keep it in check with ice packs, heating pads, and estim.
I am just looking for a Dr. who is willing to fight as hard as I am. Will post updates as I move along this path.
Hello @sstiffel64, I'm sure it's difficult to deal with this diagnosis and pain! I hope you find what you are looking for with the switch to Mayo in Jacksonville. Sometimes a fresh review of your situation is exactly what's needed.
You likely know that understanding the driver of the cancer is critical in selecting treatments. Has there been a biopsy or other test that's shown that the new progression is driven from the neuroendocrine tumor, and not a second separate cancer?
There is a specific group for NET patients that may be helpful for you too: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
Yes on the testing. And Mayo was so quick at getting my records transferred while I was on the phone making appointment. I am looking forward to a game plan.
Hello all,
Was just informed my lung cancer has spread to Liver and T7 to T4 vertebra. Diagnosis is Metastatic neuroendocrine tumor. I was seeing Duke until this Tuesday when I switched to Mayo Clinic Jacksonville. My first visit is 8/24. Looking forward to getting a plan together. I left previous Dr. because he was tone deaf to my needs and desires. I do not do well on opioids and even with my paid being pretty strong I have learned to tolerate it and keep it in check with ice packs, heating pads, and estim.
I am just looking for a Dr. who is willing to fight as hard as I am. Will post updates as I move along this path.
My husband has Stage 4 lung cancer. Initially diagnosed as Stage 1 in 2013. Had a wedge resection, no spreading to other areas. After that a few very small nodules in lung remained. Follow up scans every 3 months. Stable until May 2020. Growth returned in femur, lungs, liver and brain. Started on chemo, and radiation to brain. Growth again stopped and all except lungs showed no cancer. Chemo halted in November 2021 due to affecting production of red blood cells. November 2022, cancer returned aggressive growth. Cannot go back on chemo, Mayo dr recommended hospice.
He went from 185 lbs to 131 during this time. Hospice put him on a steroid and he gained 30 lbs in 2 months. He’s had more energy and his appetite has increased. But his short term memory is poor, he is unsteady on his feet, and now has urinary incontinence. He has been pain-free this whole time, but he told me last night that he’s having intermittent pain under his armpit. So I suspect it is now in the bones.
We’ve been living with this for 10 years, and with Stage 4 for 3 years. I truly believe the doctors at Mayo have extended his life longer than normally expected. They are wonderful, caring people. I love Dr Manochakian!
My husband has Stage 4 lung cancer. Initially diagnosed as Stage 1 in 2013. Had a wedge resection, no spreading to other areas. After that a few very small nodules in lung remained. Follow up scans every 3 months. Stable until May 2020. Growth returned in femur, lungs, liver and brain. Started on chemo, and radiation to brain. Growth again stopped and all except lungs showed no cancer. Chemo halted in November 2021 due to affecting production of red blood cells. November 2022, cancer returned aggressive growth. Cannot go back on chemo, Mayo dr recommended hospice.
He went from 185 lbs to 131 during this time. Hospice put him on a steroid and he gained 30 lbs in 2 months. He’s had more energy and his appetite has increased. But his short term memory is poor, he is unsteady on his feet, and now has urinary incontinence. He has been pain-free this whole time, but he told me last night that he’s having intermittent pain under his armpit. So I suspect it is now in the bones.
We’ve been living with this for 10 years, and with Stage 4 for 3 years. I truly believe the doctors at Mayo have extended his life longer than normally expected. They are wonderful, caring people. I love Dr Manochakian!
Oh Mary (@fowlair), what a story you have to tell, thanks for sharing. You and your husband have been through so much. I'm glad you've had this additional time together. You've been fortunate to have each other, and I wish you both the very best and peace during the coming months.
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I'm not certain that I was or wasn't told that, I'm sure I only catch half or less of what I'm told.
I forgot to answer a question in your first set. - How was it found, my first time out I had gone in because I didn't have the energy to get to my 2nd job so instead I went to the urgent care clinic. The physician ordered an x-ray and found a spot. I had influenza B so he felt it was probably due to that, but asked me to get a re-check in a couple weeks. It was still there and the story began.....
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1 Reaction@cindyjk - I think that it is extremely important to have someone with you to make sure that everything that is said about your care is noted. And also to get copies of all the radiologist's reports, lab work, etc. This way you can learn more about your illness and why it's being treated the way it is. Also, if you disagree with anything you can bring it up or use the patient portal to begin discussions.
Is this something that you could do?
Yes, and I do always have at least one friend or family member along.
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2 ReactionsCindy- Excellent! Doctors should answer all and every question you have during your visit! It's so important to self-advocate!
Hello all,
Was just informed my lung cancer has spread to Liver and T7 to T4 vertebra. Diagnosis is Metastatic neuroendocrine tumor. I was seeing Duke until this Tuesday when I switched to Mayo Clinic Jacksonville. My first visit is 8/24. Looking forward to getting a plan together. I left previous Dr. because he was tone deaf to my needs and desires. I do not do well on opioids and even with my paid being pretty strong I have learned to tolerate it and keep it in check with ice packs, heating pads, and estim.
I am just looking for a Dr. who is willing to fight as hard as I am. Will post updates as I move along this path.
-
Like -
Helpful -
Hug
7 ReactionsGood luck to you. I see an oncologist in Phoenix, but I’m only stage 1B. Taking Tagrisso. I will be interested in your experiences at Mayo Jacksonville.
Hello @sstiffel64, I'm sure it's difficult to deal with this diagnosis and pain! I hope you find what you are looking for with the switch to Mayo in Jacksonville. Sometimes a fresh review of your situation is exactly what's needed.
You likely know that understanding the driver of the cancer is critical in selecting treatments. Has there been a biopsy or other test that's shown that the new progression is driven from the neuroendocrine tumor, and not a second separate cancer?
There is a specific group for NET patients that may be helpful for you too: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
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Like -
Helpful -
Hug
1 ReactionYes on the testing. And Mayo was so quick at getting my records transferred while I was on the phone making appointment. I am looking forward to a game plan.
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Like -
Helpful -
Hug
2 ReactionsMy husband has Stage 4 lung cancer. Initially diagnosed as Stage 1 in 2013. Had a wedge resection, no spreading to other areas. After that a few very small nodules in lung remained. Follow up scans every 3 months. Stable until May 2020. Growth returned in femur, lungs, liver and brain. Started on chemo, and radiation to brain. Growth again stopped and all except lungs showed no cancer. Chemo halted in November 2021 due to affecting production of red blood cells. November 2022, cancer returned aggressive growth. Cannot go back on chemo, Mayo dr recommended hospice.
He went from 185 lbs to 131 during this time. Hospice put him on a steroid and he gained 30 lbs in 2 months. He’s had more energy and his appetite has increased. But his short term memory is poor, he is unsteady on his feet, and now has urinary incontinence. He has been pain-free this whole time, but he told me last night that he’s having intermittent pain under his armpit. So I suspect it is now in the bones.
We’ve been living with this for 10 years, and with Stage 4 for 3 years. I truly believe the doctors at Mayo have extended his life longer than normally expected. They are wonderful, caring people. I love Dr Manochakian!
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Like -
Helpful -
Hug
4 ReactionsOh Mary (@fowlair), what a story you have to tell, thanks for sharing. You and your husband have been through so much. I'm glad you've had this additional time together. You've been fortunate to have each other, and I wish you both the very best and peace during the coming months.
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