First Post-Treatment Scan: Uncertain about next steps

Posted by bpb @bpb, Jan 23, 2023

Hello Friends,

I had a consult with my radiation oncologist on Friday about the scan results. The good news is still no lymph involvement and she says that the targeted SABR treatment for 2 tumors is working. However, there are 2 new nodules in the same general region and perhaps the left adrenal gland is becoming involved as it had uptake. Her plan is to wait 3 months and do another scan. In the moment, I felt fine with this news but over the weekend, I have become rather upset and wonder about getting a second opinion. I am clear I had unmet expectations and hopes that the outcome would be much clearer and further along with no new tumors. Open to support, ideas and tips for so much uncertainty. Just when I get used to the level of uncertainty, it seems to get way more uncertain!!

Thank you!
BPB

Interested in more discussions like this? Go to the Lung Cancer Support Group.

It might be worth contacting your radiation oncologist and expressing your concerns. It that doesn’t satisfy you, then a second opinion.

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I would be concerned about waiting three months when there is more activity. I would want a scan just for peace of mind even though the radiation oncologist sees no reason for alarm.

You could meet with an oncologist, not necessarily a radiation oncologist and see what they think.

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@thieschafer

It might be worth contacting your radiation oncologist and expressing your concerns. It that doesn’t satisfy you, then a second opinion.

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Hi,
I sent her a message yesterday and also asked to be referred to a regular medical oncologist which I understand to be kind of the primary doc for coordinating cancer stuff. I haven't heard back yet.

Thank you!

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@freitag

I would be concerned about waiting three months when there is more activity. I would want a scan just for peace of mind even though the radiation oncologist sees no reason for alarm.

You could meet with an oncologist, not necessarily a radiation oncologist and see what they think.

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Hi,

I have expressed my concern as well as asked to be referred to a medical oncologist. I also thought today that I should ask about the size of the treated tumors and how that has changed from October. That might be helpful to me to understand better how the treatment is going.

If I don't hear back from her in a week, I'll be looking for a second opinion.

I also saw a new acupuncturist today and liked her very much. I have a lot going on and was very moved by her thoroughness as well as skill. After seeing her, I felt the best I've felt in a very long time! I'll be going back to her, I'm sure.

Thank you!

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@bpb

Hi,
I sent her a message yesterday and also asked to be referred to a regular medical oncologist which I understand to be kind of the primary doc for coordinating cancer stuff. I haven't heard back yet.

Thank you!

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Do I understand correctly that you have been seen and treated by a Radiation Oncologist without seeing a Medical Oncologist? Where was this?

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Hi,

Yes, you understand correctly. This is at a highly regarded NIH Center of Excellence in California.

It never occurred to me that I should also be seeing a medical oncologist until this past week.

Thank you!
BPB

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In my opinion, as a patient, the Medical Oncologist is actually more involved throughout the entire treatment cycle. For me, the Medical Oncologist works with the Radiation Oncologist to develop the treatment plan that involved chemotherapy coordinated with radiation therapy. My chemotherapy was designed to make the radiation therapy work more effectively. At that point, after the radiation therapy, I am possibly and hopefully done with the Radiation Oncologist but still see the Medical Oncologist for immunotherapy. I imagine either one could oversee the check up and monitoring CT scans. It just seemed strange to me to only have a Radiation Oncologist because I am more involved with my Medical Oncologist. I guess every place can be a little different.

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@nonobaddog

In my opinion, as a patient, the Medical Oncologist is actually more involved throughout the entire treatment cycle. For me, the Medical Oncologist works with the Radiation Oncologist to develop the treatment plan that involved chemotherapy coordinated with radiation therapy. My chemotherapy was designed to make the radiation therapy work more effectively. At that point, after the radiation therapy, I am possibly and hopefully done with the Radiation Oncologist but still see the Medical Oncologist for immunotherapy. I imagine either one could oversee the check up and monitoring CT scans. It just seemed strange to me to only have a Radiation Oncologist because I am more involved with my Medical Oncologist. I guess every place can be a little different.

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Your response is very helpful. I've asked about a Medical Oncologist for my care team. I've asked some other questions and will be exploring getting a second opinion. Others have said that the Medical Oncologist is like the primary care doc of cancer.

Thanks for your response!

BPB

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I think the others said it very well, better than I did.
Best wishes to you.

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Any update @bpb? Did you meet with your medical oncologist?

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