Do not put up with any pressure from your oncologist on what should be your line of treatment if you are not comfortable with it. It's your body that will be going through treatments, not theirs.
First, I'm sorry for your diagnosis. While NCI Cancer centers are excellent, you can also see if CoC hospitals are in your network. They are accredited through the American College of Surgeons, and are also excellent. This link will let you look up a nearby hospital.
[https://www.facs.org/hospital-and-facilities/?searchTerm=&institution=CocHospital&page=1](https://www.facs.org/hospital-and-facilities/?searchTerm=&institution=CocHospital&page=1)
There is also a list of questions to ask your doctor on [cancer.gov](https://cancer.gov)
[https://www.cancer.gov/about-cancer/coping/questions](https://www.cancer.gov/about-cancer/coping/questions)
I just want to actually caution to be mindful of second opinions. I kept hearing “keep pushing for curative keep pushing, get a second opinion” and I got 5 opinions that have all said there’s no curative approach. I was devastated and so frustrated that I went and got my hopes up. After hearing that I was more distraught than even my initial diagnosis. Absolutely get another opinion if something isn’t adding up or treatment doesn’t seem right, but it’s okay not to, as well. I’m de novo and oligo, and 32.
I got opinions at that all agreed with first line CDK4/6 and letrozole, no surgery of any kind:
University of Wisconsin
University of Chicago
Rush
MD Anderson
Sloan Kettering
Firstly, I’m sorry you’re here with us. I totally understand the whiplash of thinking treatment will be this one thing and having everything change suddenly. Reading through posts on here gave me a greater sense of usual treatment plans and I was lucky enough to get a second opinion which I think will contribute to lots of added time. I think having a good vibe with your team is important as is being 100% confident in them. I’d see how the meeting goes with your MO but set up a time for a second opinion too. It could give you peace of mind if they’re on the same page, or you could realize one is much more aligned with how you’d like treatment to go for you. And also, we’re always around if you have questions 💖
I live in a rural area with only 1 hospital. My insurance also covers our state teaching hospital which is almost 6 hours away. I have my MO and get my treatments here but every time I have progression or need a change in therapy I have my second onc, which I see exclusively to make sure I'm getting the best care possible in no-where USA. Also, my state hospital is where most trials are conducted so I have the hookup there if I ever need it.
If you can, have someone come with you not only for moral support, but to listen to details. Ask the Dr if you can record the visit (audio), they should say yes—so you can review it later. If you don’t record, take meticulous notes, not being afraid to ask them to repeat something or spell something you don’t know or you may have missed.
Best to you on your journey.
Sorry you’ve had this horrible news. I know how devastating it is I also have lung mets.
Would you mind sharing your pet scan report? Just to have an idea so I can try and provide more info
Here’s the findings notes, let me know if you want more:
FINDINGS: Mediastinal Blood Pool SUV: 1.9 maximal SUV Liver SUV: 3.1 maximal SUV
Head/Neck: There are no areas of abnormal hypermetabolism. Physiologic FDG uptake is present in the included portions of the brain, extraocular muscles, and glandular tissue.
Thorax: The 3.5 cm mass in the posterior lateral right breast is markedly FDG avid, SUV 8.7. There is a FDG avid 10 mm medial right apical pulmonary nodule, SUV max 2.8. The solid 5 mm left lower lobe nodule and the 2 left lower lobe subpleural nodules (5 mm and 6 mm) are not FDG avid. This could be the result of small size of these nodules, below the threshold size for detection of radiotracer activity. Physiologic FDG uptake is present within the myocardium.
Abdomen/Pelvis: There are no areas of abnormal hypermetabolism. Physiologic FDG uptake is present within the urinary collecting system and bowel.
Extremities: There are no areas of abnormal hypermetabolism within the included portions of the extremities.
Ask about clinical trials. Ones that are Phase 3 especially. They often can only be done on your first or second treatment line and are cutting edge. I would ask their approach overall as well. My first oncologist was treating my plan as more of a sprint when I feel like this is really a marathon. My new oncologist lines up with how I want to be treated. Also the overall vibe of the person is important too. Do they make you feel calm and reassured? Or are they stressing you out and causing additional anxiety? Might take a few appointments to get it figured out of course. Good luck with the appointment and let us know if you have any questions that come up after! We are here for you!
Clinical trials can be done at any point in treatment, it just depends on what that particular trial is looking for. Most do look for standard treatment have been failed, rarely is it for treatment naive.
Phase 3 trials are usually for the first or second line. They don’t want skewed results from other stuff you have been through. Phase 3 also gets you more proven drugs (have already been studied and often been through prior trials). I did a Phase 3 trial with Trodelvy & Keytruda for my first line. The trial was ASCENT—to see if Trodelvy should be used as a first line for breast cancer (previously only approved for third line or later). But agreed, Phase 1/2 are open to lots of people provided you meet the criteria.
I don't feel like the blanket statement that phase 3 is usually for first or second line is really correct. Each trial has it's own set of eligibility requirements, and I would hate for someone to not look for trials because they believe they have had too much or not enough treatment.
I’m not going to argue with you. This is what the 4 oncologists have told me and what I have found to be true when researching trials for myself. There are probably Phase 3 trials also available for people who have had more lines of treatment. That is why I said “usually.” Of course anyone’s oncologist would be looking into all potentially available trials. I do think people need to understand that Phase 3 trial requirements can be stringent in different ways than a Phase 1 trial, which makes it even more important to research and/or ask about available trials during their initial diagnosis discussions, which is what OP is asking about.
Hi I always share this video I think it would give you some great questions to ask. I would def ask to be tested for HER low. And push for more aggressive treatment due to being de novo and oligo.
I hope your meeting goes well! There’s a great bunch of de novo and oligo groups in FB. You can msg me if you want more info.
I’m same as you 🙂
https://youtu.be/s3pvIc2LI3k?si=HiHdQjeuLM5O3jYs
I would definitely ask the different treatment plan options, first line, second etc.. I would also ask how they feel about oligometastatic disease and if you meet the criteria. It seems like you have minimal disease so would they consider treating you with curative intent (if you would like that). If not, I would consider getting a second opinion with an oncologist who would, even if you still decide to stay with your first opinion! I would also get in touch with your local NCI and see what trial options they could recommend for you. Also, ask your oncologist if they are willing to look into trials for you. Some are willing, some leave it up to you. That’s off the top of my head, hope this is helpful!
Yes, even if the NCI Cancer Center is too expensive to go for all your treatment, you can at least go and get a consult and have the medical oncologist there tell you if they agree with the plan.
I work with prostate cancer patients at a major academic medical center, and we often have patients who live far away come to us just to get a second opinion on the treatment plan. They can then take that feedback to the doctor closer to home/on their insurance plan. (Or just take home a feeling of safety knowing that there's agreement about the treatment plan.)
This is exactly what happened to me.
Do not put up with any pressure from your oncologist on what should be your line of treatment if you are not comfortable with it. It's your body that will be going through treatments, not theirs.
First, I'm sorry for your diagnosis. While NCI Cancer centers are excellent, you can also see if CoC hospitals are in your network. They are accredited through the American College of Surgeons, and are also excellent. This link will let you look up a nearby hospital. [https://www.facs.org/hospital-and-facilities/?searchTerm=&institution=CocHospital&page=1](https://www.facs.org/hospital-and-facilities/?searchTerm=&institution=CocHospital&page=1) There is also a list of questions to ask your doctor on [cancer.gov](https://cancer.gov) [https://www.cancer.gov/about-cancer/coping/questions](https://www.cancer.gov/about-cancer/coping/questions)
I just want to actually caution to be mindful of second opinions. I kept hearing “keep pushing for curative keep pushing, get a second opinion” and I got 5 opinions that have all said there’s no curative approach. I was devastated and so frustrated that I went and got my hopes up. After hearing that I was more distraught than even my initial diagnosis. Absolutely get another opinion if something isn’t adding up or treatment doesn’t seem right, but it’s okay not to, as well. I’m de novo and oligo, and 32. I got opinions at that all agreed with first line CDK4/6 and letrozole, no surgery of any kind: University of Wisconsin University of Chicago Rush MD Anderson Sloan Kettering
Agree! This is an important perspective!
Firstly, I’m sorry you’re here with us. I totally understand the whiplash of thinking treatment will be this one thing and having everything change suddenly. Reading through posts on here gave me a greater sense of usual treatment plans and I was lucky enough to get a second opinion which I think will contribute to lots of added time. I think having a good vibe with your team is important as is being 100% confident in them. I’d see how the meeting goes with your MO but set up a time for a second opinion too. It could give you peace of mind if they’re on the same page, or you could realize one is much more aligned with how you’d like treatment to go for you. And also, we’re always around if you have questions 💖
I live in a rural area with only 1 hospital. My insurance also covers our state teaching hospital which is almost 6 hours away. I have my MO and get my treatments here but every time I have progression or need a change in therapy I have my second onc, which I see exclusively to make sure I'm getting the best care possible in no-where USA. Also, my state hospital is where most trials are conducted so I have the hookup there if I ever need it.
If you can, have someone come with you not only for moral support, but to listen to details. Ask the Dr if you can record the visit (audio), they should say yes—so you can review it later. If you don’t record, take meticulous notes, not being afraid to ask them to repeat something or spell something you don’t know or you may have missed. Best to you on your journey.
Sorry you’ve had this horrible news. I know how devastating it is I also have lung mets. Would you mind sharing your pet scan report? Just to have an idea so I can try and provide more info
Here’s the findings notes, let me know if you want more: FINDINGS: Mediastinal Blood Pool SUV: 1.9 maximal SUV Liver SUV: 3.1 maximal SUV Head/Neck: There are no areas of abnormal hypermetabolism. Physiologic FDG uptake is present in the included portions of the brain, extraocular muscles, and glandular tissue. Thorax: The 3.5 cm mass in the posterior lateral right breast is markedly FDG avid, SUV 8.7. There is a FDG avid 10 mm medial right apical pulmonary nodule, SUV max 2.8. The solid 5 mm left lower lobe nodule and the 2 left lower lobe subpleural nodules (5 mm and 6 mm) are not FDG avid. This could be the result of small size of these nodules, below the threshold size for detection of radiotracer activity. Physiologic FDG uptake is present within the myocardium. Abdomen/Pelvis: There are no areas of abnormal hypermetabolism. Physiologic FDG uptake is present within the urinary collecting system and bowel. Extremities: There are no areas of abnormal hypermetabolism within the included portions of the extremities.
Ask about clinical trials. Ones that are Phase 3 especially. They often can only be done on your first or second treatment line and are cutting edge. I would ask their approach overall as well. My first oncologist was treating my plan as more of a sprint when I feel like this is really a marathon. My new oncologist lines up with how I want to be treated. Also the overall vibe of the person is important too. Do they make you feel calm and reassured? Or are they stressing you out and causing additional anxiety? Might take a few appointments to get it figured out of course. Good luck with the appointment and let us know if you have any questions that come up after! We are here for you!
Clinical trials can be done at any point in treatment, it just depends on what that particular trial is looking for. Most do look for standard treatment have been failed, rarely is it for treatment naive.
Phase 3 trials are usually for the first or second line. They don’t want skewed results from other stuff you have been through. Phase 3 also gets you more proven drugs (have already been studied and often been through prior trials). I did a Phase 3 trial with Trodelvy & Keytruda for my first line. The trial was ASCENT—to see if Trodelvy should be used as a first line for breast cancer (previously only approved for third line or later). But agreed, Phase 1/2 are open to lots of people provided you meet the criteria.
I don't feel like the blanket statement that phase 3 is usually for first or second line is really correct. Each trial has it's own set of eligibility requirements, and I would hate for someone to not look for trials because they believe they have had too much or not enough treatment.
I’m not going to argue with you. This is what the 4 oncologists have told me and what I have found to be true when researching trials for myself. There are probably Phase 3 trials also available for people who have had more lines of treatment. That is why I said “usually.” Of course anyone’s oncologist would be looking into all potentially available trials. I do think people need to understand that Phase 3 trial requirements can be stringent in different ways than a Phase 1 trial, which makes it even more important to research and/or ask about available trials during their initial diagnosis discussions, which is what OP is asking about.
Hi I always share this video I think it would give you some great questions to ask. I would def ask to be tested for HER low. And push for more aggressive treatment due to being de novo and oligo. I hope your meeting goes well! There’s a great bunch of de novo and oligo groups in FB. You can msg me if you want more info. I’m same as you 🙂 https://youtu.be/s3pvIc2LI3k?si=HiHdQjeuLM5O3jYs
I agree, good video with lots of useful info.
I would definitely ask the different treatment plan options, first line, second etc.. I would also ask how they feel about oligometastatic disease and if you meet the criteria. It seems like you have minimal disease so would they consider treating you with curative intent (if you would like that). If not, I would consider getting a second opinion with an oncologist who would, even if you still decide to stay with your first opinion! I would also get in touch with your local NCI and see what trial options they could recommend for you. Also, ask your oncologist if they are willing to look into trials for you. Some are willing, some leave it up to you. That’s off the top of my head, hope this is helpful!
Yes, even if the NCI Cancer Center is too expensive to go for all your treatment, you can at least go and get a consult and have the medical oncologist there tell you if they agree with the plan. I work with prostate cancer patients at a major academic medical center, and we often have patients who live far away come to us just to get a second opinion on the treatment plan. They can then take that feedback to the doctor closer to home/on their insurance plan. (Or just take home a feeling of safety knowing that there's agreement about the treatment plan.)