Rising CEA while on palliative therapy for oligometastatic colorectal cancer

[roadrunner]

skb:

Can you advise where your nodules are—lung- and lobe-wise, I mean.

You may be able to combine surgery with SBRT or cryoablation, or even consider laser surgery (offered in Germany (at least)).

Also, FOLFIRI plus Avastin should at least be discussed.

[skb]

The initial report just listed the largest nodule (7x7). I requested a re-reading because it had some obvious error (said I was on immunotherapy while I am actually on just chemotherapy)

My oncologist respectfully told me he felt that my request for details was an unproductive exercise and I should be getting some psychiatric assistance. He said I might be harming myself and my family by worrying too much. He added that I might benefit from hearing a different voice. Once he hung up, my normally stoic wife broke down in tears. She said she felt the doctor was disappointed in me.

I am careful not to share any results with my wife because I worry whether I am burdening her too much. I tell her only if she asks. I also message my oncologist only once in 3 months when the scan result is posted online.

Well, that is that. Im now trying to get an appt. with Dr. Prakash, another oncologist.

Nevertheless my current oncologist was nice enough to request a second reading. The following is the revised report I got yesterday.

1. Right upper lobe nodule (4/64) increasing in size now 7.5 x 7.5 mm.
(Inferior portion of RUL just above minor fissure)

* 1/20/23 not present
* 6/5/23 new 3 mm solid nodule RUL with adjacent arter
* 10/28/23 through 2/14/23 now with small extension to adjacent artery
* 5/15/24 still 3 mm original nodule but now more apparent extension and starting to look bilobed. If I measure the extension as part of the nodule you get 3 x 5 mm.
* 9/3/24 apparent growth and now multi lobulated single nodule measuring 7.5 x 7.5 mm


2. Surgical scar RLL is stable measuring 20 x 9 mm


3. Other nodules are also larger compared to 5/15/24

* LUL 3 mm nodule was 2 mm (4/55)
* LLL paired nodules (4/156) increased to 2 mm from 1 mm.
* RLL paired nodules (4127) increased from 3 mm each to a 4 mm and 5 mm nodule.


CHARLES DIETZ, MD

[Green Tea]

skb-
Right now I think your best bet is to press for a second opinion meeting with Dr. Prakash. He has a specialty in Gastrointestinal Medical Oncology, and furthermore he is doing cutting-edge research in colon cancer. and has received a 2024 colon cancer research award:

https://cancer.umn.edu/mezin-koats-colo ... arch-award

[skb]

Thank you Green Tea.
I really respect and appreciate the suggestions from everyone on this forum
including you, Roadrunner, Utahgal

[skb]

Thank you Green Tea.
I really respect and appreciate the suggestions from everyone on this forum
including you, Roadrunner, Utahgal

[roadrunner]

So it sounds as though you’ve got 6 likely pulmonary mets, distributed around the lungs. I also note that your thread title called your treatment “palliative therapy for oligometastatic colorectal cancer.” I’d be interested in who introduced those terms in the discussion and whether they were fully explained/discussed at that time. This may matter because the term “oligometastatic” is a marker for cases that might fall into a gray area as far as treatment options go. There certainly are a lot of oncologists and pulmonary surgeons who would look at this the way your current oncologist apparently does, but it may be that others would be more aggressive, potentially considering a combo of systemic and local treatment, with palliative or curative intent. And even if no one is interested in providing an aggressive curative approach, you may benefit from exploring ablation (RFA, SBRT, or cryoablation) under the heading of “palliative” therapy, or simply from advocating for it this way. For example, you may wish to educate yourself about the “abscopal effect” that can occasionally result from radio or other therapy on one/some metastases in contexts like yours. Also, while I don’t mean this negatively, you may wish to explore clinical trials—pulmonary mets, even if untreated, are usually slow growing, and yours are at an early stage. There may be trials out there right now (or coming) that could give you material benefit. All of this assumes, of course, that you are at least interested in pursuing aggressive options.

At the very least, all reasonable systemic options should be considered. I do not think Xeloda is usually considered SOC for multiple bilateral pulmonary mets, in any case. To me, it reflects a less aggressive systemic approach. Maybe that’s what you want, but that also should be discussed.

The overall point is that knowledge and clear communication/aligned goals with your team is at a premium now. It may well be worth getting second and third opinions, or more, even if you have to go far afield to get them. Assuming you have the desire and resources to do so, of course.

Finally, a bit of a rant. I don’t know how you interacted with your current oncologist, but given the context you’ve presented, his response sounds quite disappointing. Detail is your right in this situation—these are your lungs and it’s your life. Further, while the suggestion to seek psychiatric care may have been well-meant, it does not appear to have been productive in this context. I wonder if his training was sufficient to enable him to reliably identify psychological issues in this difficult context, or if it was just an expression of impatience and frustration? In any case, I think you are doing the right thing by seeking new counsel. I wish you strength and good fortune with this.

[roadrunner]

So it sounds as though you’ve got 6 likely pulmonary mets, distributed around the lungs. I also note that your thread title called your treatment “palliative therapy for oligometastatic colorectal cancer.” I’d be interested in who introduced those terms in the discussion and whether they were fully explained/discussed at that time. This may matter because the term “oligometastatic” is a marker for cases that might fall into a gray area as far as treatment options go. There certainly are a lot of oncologists and pulmonary surgeons who would look at this the way your current oncologist apparently does, but it may be that others would be more aggressive, potentially considering a combo of systemic and local treatment, with palliative or curative intent. And even if no one is interested in providing an aggressive curative approach, you may benefit from exploring ablation (RFA, SBRT, or cryoablation) under the heading of “palliative” therapy, or simply from advocating for it this way. All of that assumes, of course, that you are interested in taking an aggressive approach if available. For example, you may wish to educate yourself about the “abscopal effect” that can occasionally result from radio or other therapy on one/some metastases in contexts like yours. Also, while I don’t mean this negatively, you may wish to explore clinical trials—pulmonary mets, even if untreated, are usually slow growing, and yours are at an early stage. There may be trial out there right now (or coming) that could give you material benefit. At the very least, all other reasonable systemic options should be considered. I do not think Xeloda is usually considered SOC for multiple bilateral pulmonary mets, in any case. To me, it reflects a less aggressive systemic approach. Maybe that’s what you want, but that also should be discussed.

The overall point is that knowledge and clear communication/aligned goals with your team is at a premium now. It may well be worth getting second and third opinions, or more, even if you have to go far afield to get them. Assuming you have the desire and resources to do so, of course.

Finally, a bit of a rant. I don’t know how you interacted with your current oncologist, but given the context you’ve presented, his response sounds quite disappointing. Detail is your right in this situation—these are your lungs and it’s your life. Further, while the suggestion to seek psychiatric care may have been well-meant, it does not appear to have been productive in this context. I wonder if his training was sufficient to enable him to reliably identify psychological issues in this difficult context, or if it was just an expression of impatience and frustration? In any case, I think you are doing the right thing by seeking new counsel. I wish you strength and good fortune with this.

[skb]

Roadrunner,
Thank you for your very detailed reply.

I heard the term oligometastatic for the first time from you in Nov 2023.
"There’s a lot of material in this article that may be pertinent to your situation.

https://www.cancer.gov/news-events/canc ... eans%20few



"

[roadrunner]

Ok, thanks for clarifying that. I think it may be important to see if future oncologists view your disease that way or as diffuse disease. From my perspective, it’s a discussion worth having. From what I’ve seen, there aren’t bright lines in circumstances like yours. I also think future conversations should include the shared understanding of whether the approach is “palliative,” “curative,” or perhaps “curative down the road if things go well.”

[skb]

Adding avastin to Xeloda starting next week