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.
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/
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.
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.
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 am so very grateful for the years I have received. I will be able to greet my 10th(and final) grandchild in January. A birth is always miraculous, but the fact that I should be here to see it is another miracle.
I was first diagnosed with lung cancer 5.5 years ago. A lobectomy of my left upper lobe was preformed and it was deemed that no further tx was necessary. About a year later my scans revealed lesions in all lobes. The oncologist guessed that I had 6 to 9 months, but sent my biopsy for genomic testing. Turns out that I have a ROS1 mutation. I have been on a targeted therapy drug and have been mostly stable since starting it; I did have one wedge removed the summer of 2020.
I go between Dr. Mansfield at the Mayo and a local Allina oncologist.
We may not know how much time we have before the nasty stuff takes us, but we do control how we spend the time we have left.
Love on my friends
I am so very grateful for the years I have received. I will be able to greet my 10th(and final) grandchild in January. A birth is always miraculous, but the fact that I should be here to see it is another miracle.
I was first diagnosed with lung cancer 5.5 years ago. A lobectomy of my left upper lobe was preformed and it was deemed that no further tx was necessary. About a year later my scans revealed lesions in all lobes. The oncologist guessed that I had 6 to 9 months, but sent my biopsy for genomic testing. Turns out that I have a ROS1 mutation. I have been on a targeted therapy drug and have been mostly stable since starting it; I did have one wedge removed the summer of 2020.
I go between Dr. Mansfield at the Mayo and a local Allina oncologist.
We may not know how much time we have before the nasty stuff takes us, but we do control how we spend the time we have left.
Love on my friends
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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.
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2 ReactionsHello @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 ReactionGood 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.
-
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Helpful -
Hug
7 ReactionsCindy- Excellent! Doctors should answer all and every question you have during your visit! It's so important to self-advocate!
Yes, and I do always have at least one friend or family member along.
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2 Reactions@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?
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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Like -
Helpful -
Hug
1 ReactionWere you told that you have multifocal adenocarcinoma of the lungs?
I love your attitude. I'm sure that your participation in this group will help raise a few spirits, at least!
I am so very grateful for the years I have received. I will be able to greet my 10th(and final) grandchild in January. A birth is always miraculous, but the fact that I should be here to see it is another miracle.
I was first diagnosed with lung cancer 5.5 years ago. A lobectomy of my left upper lobe was preformed and it was deemed that no further tx was necessary. About a year later my scans revealed lesions in all lobes. The oncologist guessed that I had 6 to 9 months, but sent my biopsy for genomic testing. Turns out that I have a ROS1 mutation. I have been on a targeted therapy drug and have been mostly stable since starting it; I did have one wedge removed the summer of 2020.
I go between Dr. Mansfield at the Mayo and a local Allina oncologist.
We may not know how much time we have before the nasty stuff takes us, but we do control how we spend the time we have left.
Love on my friends
-
Like -
Helpful -
Hug
3 Reactions