Please help - Rectal Cancer with Possible Lung Metastasis

Posted by varg4258 @varg4258, Nov 30, 2023

I had a CT scan yesterday and found the following.
concerning for metastatic disease as follows:
* 6 mm nodule right lower lobe (2/42), new since prior exam
* 3 mm nodule lateral left lower lobe (2/52), new since prior exam.
Chemo and rectal Surgery completed in 2/2023. Meeting with the oncology team next week to review the results. I need help to find a hospital that specializes in Lung cancer. reply or Private message me with best hospital name, & doctors (Skilled/Passionate about results than effort) oncologist, surgeon & radiologist.

Any John Hopkins doctors ? Oncologist/surgeon/radiologist

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

@varg4258

paul28-Great Information and appreciate you taking the time to respond with doctor details. I was looking at MD Anderson NY for a second opinion. I would not take the Xeloda & Oxiplatin if i had to do it over again and since the cancer came back in another organ.

Current hospital gave me 3 options- Focused radiation, surgery or Ablation therapy.
Not sure which option to choose from radiation or surgery?

Are you having any lung issues after the surgery? healing time?

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Apologies - I didn’t intend to virtually elbow you off the page @paul28. I didn’t notice it was you Varg4258 had addressed her questions to until just now.

🤭

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@varg4258

paul28-Great Information and appreciate you taking the time to respond with doctor details. I was looking at MD Anderson NY for a second opinion. I would not take the Xeloda & Oxiplatin if i had to do it over again and since the cancer came back in another organ.

Current hospital gave me 3 options- Focused radiation, surgery or Ablation therapy.
Not sure which option to choose from radiation or surgery?

Are you having any lung issues after the surgery? healing time?

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Hi
No, I have not had any pain or other issues since surgeries of colon or lung, which is why I highly recommend my doctors here in Indianapolis!
I do feel that not being obese, or diabetic, or having high blood pressure, cholesterol, etc, is a big advantage in recovery and healing.
So an otherwise healthy person should expect to have good results in procedures where no complications existed.

I often struggle somewhat in giving advice to others. Because such advice comes from the opinions that are from personal experiences.
So having had good experiences, I am bias in my opinions and feelings, which may or may not fit with the health history and circumstances of others. So I try to be cautious to a point.

You have already had a cancer that has metastasized to the lungs after a surgery and chemo.
In my thinking , that's like saying everything in the past has not proved successful, so what should the next course of action be?

I see the choice of Ablation to be the same as Chemotherapy. No doctor is going to guarantee that a cancer will be eliminated by this anymore than chemo.
And I'm not sure that Radiation is any different. Radiation can be a tough recovery and it's another wait and see .... maybe it did, maybe it didn't?

With surgery, a doctor can tell you that all of a cancer has likely been removed based on what is seen in scans and the testing of the adjoining margins. That lends itself to some evidence in what is known, not assumed.

I understand that no one can guarantee you anything where it only takes one microscopic cell not seen and all bets are off.

At least with surgery you know that all of something that has been seen has been removed. And by a skilled specialist who does this every day and can share his confidence with you that he expects a positive result!

To even consider lung surgery, you must first find that doctor that you can have confidence in after every question has been answered!
Please have that be what any and all decisions are based on!
May you find your blessing!
Paul

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@paul28

Hi
No, I have not had any pain or other issues since surgeries of colon or lung, which is why I highly recommend my doctors here in Indianapolis!
I do feel that not being obese, or diabetic, or having high blood pressure, cholesterol, etc, is a big advantage in recovery and healing.
So an otherwise healthy person should expect to have good results in procedures where no complications existed.

I often struggle somewhat in giving advice to others. Because such advice comes from the opinions that are from personal experiences.
So having had good experiences, I am bias in my opinions and feelings, which may or may not fit with the health history and circumstances of others. So I try to be cautious to a point.

You have already had a cancer that has metastasized to the lungs after a surgery and chemo.
In my thinking , that's like saying everything in the past has not proved successful, so what should the next course of action be?

I see the choice of Ablation to be the same as Chemotherapy. No doctor is going to guarantee that a cancer will be eliminated by this anymore than chemo.
And I'm not sure that Radiation is any different. Radiation can be a tough recovery and it's another wait and see .... maybe it did, maybe it didn't?

With surgery, a doctor can tell you that all of a cancer has likely been removed based on what is seen in scans and the testing of the adjoining margins. That lends itself to some evidence in what is known, not assumed.

I understand that no one can guarantee you anything where it only takes one microscopic cell not seen and all bets are off.

At least with surgery you know that all of something that has been seen has been removed. And by a skilled specialist who does this every day and can share his confidence with you that he expects a positive result!

To even consider lung surgery, you must first find that doctor that you can have confidence in after every question has been answered!
Please have that be what any and all decisions are based on!
May you find your blessing!
Paul

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Great response Paul and a great reminder that we all respond on the basis of our own experience. Your experience was good and your perspective was balanced. My experience was less than great and my perspective is less so. I lean toward my ‘road not taken’ and shame on me.
But the truth is that if I had to do it again I would huddle with an oncologist for guidance. For reasons I can’t justify, I didn’t do that. Eliminating cancer is their business - to the extent any human can. So I think they could recommend one or the other in straightforward cases, but likely will recommend a mix.

Again great response.

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@pb50

Great response Paul and a great reminder that we all respond on the basis of our own experience. Your experience was good and your perspective was balanced. My experience was less than great and my perspective is less so. I lean toward my ‘road not taken’ and shame on me.
But the truth is that if I had to do it again I would huddle with an oncologist for guidance. For reasons I can’t justify, I didn’t do that. Eliminating cancer is their business - to the extent any human can. So I think they could recommend one or the other in straightforward cases, but likely will recommend a mix.

Again great response.

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I get where you are coming from and I respect that.
You do know that I met with Oncologists on 3 occasions and passed .... I took the wait-and-see of having blood tests and CT Scans every 3 and 4 months. Now, 18 months later, all is still good.
To me, that's 18 months of quality of life, rather the devastating effects on your body from chemo.

So my first thoughts have never been to huddle with an Oncologist for guidance because you already know what they are going to say!

I want to have a proper diagnosis, all available tests, whether that be blood, Scans, a biopsy or whatever.
I want to talk with those doctors who performed those things, get a second opinion if I should lean that way, and come to a decision.
If that is to have surgery, then I already have chosen the doctor because he is the one who ordered those tests.
By this time, I have already established my relationships with my surgeon, and have every feeling of being comfortable and confident going forward!

I try to see all aspects and all possibilities and try to find that path of least resistance. My road avoids chemo at all costs.
A lot more can be said on this but we make our decisions and be prepared to live (or not) with them.

I prefer to hope that your road is one of health and happiness!
Paul

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Many thanks. I consider myself to be an educated researcher. I’ve been in health care and banking risk/compliance in my career. But when a nodule we had been watching for four years jumped 4mm in size from 11mm to 15, my pulmonologist sent me to a cardio thoracic surgeon. Surgeons cut. But instead of waiting, taking an educated response, and knowing It wasn’t aggressive, I nonetheless had a “get it out right now!’ response. And I have regretted that decision from the first moment after surgery. All margins and nodes were clear. I could have logically taken a less drastic path. I do think an oncologist might have presented those other options and reined in my overreaction.
But hindsight is always brilliant. 😜

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@pb50

Many thanks. I consider myself to be an educated researcher. I’ve been in health care and banking risk/compliance in my career. But when a nodule we had been watching for four years jumped 4mm in size from 11mm to 15, my pulmonologist sent me to a cardio thoracic surgeon. Surgeons cut. But instead of waiting, taking an educated response, and knowing It wasn’t aggressive, I nonetheless had a “get it out right now!’ response. And I have regretted that decision from the first moment after surgery. All margins and nodes were clear. I could have logically taken a less drastic path. I do think an oncologist might have presented those other options and reined in my overreaction.
But hindsight is always brilliant. 😜

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I am not clear on why you regret your decision?
Was the nodule found to be benign, along with margins and no lymph node involvement?
If it was cancerous, I can't imagine being regretful about anything?

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You had a rare lung cancer, right ??

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@paul28

I am not clear on why you regret your decision?
Was the nodule found to be benign, along with margins and no lymph node involvement?
If it was cancerous, I can't imagine being regretful about anything?

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Doh :).
It was a mucinous adenocarcinoma. A rather rare variety. But to take out a tumor barely 1/2” long, I had 3 incisions, lost an entire lobe where it was found, and six months later, I still have diaphragm and rib pain when I try to breath deeper in my lungs. I am short of breath in most situations - bending over, walking a mild incline, lifting virtually anything, and still have residual fatigue. So I believe with the benefit of hindsight that other options would likely have had fewer long term side effects.

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@pb50

Doh :).
It was a mucinous adenocarcinoma. A rather rare variety. But to take out a tumor barely 1/2” long, I had 3 incisions, lost an entire lobe where it was found, and six months later, I still have diaphragm and rib pain when I try to breath deeper in my lungs. I am short of breath in most situations - bending over, walking a mild incline, lifting virtually anything, and still have residual fatigue. So I believe with the benefit of hindsight that other options would likely have had fewer long term side effects.

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Two things come to mind -

1- Were you told, or did you not ask about the type of surgery, i.e, Laporascopic or something else?

You did not know that you would wake up to 3 incisions beforehand?

2- Why a Lobectomy?
Was a Lobectomy necessary because you were told why a Lung Wedge Resection would not be?

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@paul28

Two things come to mind -

1- Were you told, or did you not ask about the type of surgery, i.e, Laporascopic or something else?

You did not know that you would wake up to 3 incisions beforehand?

2- Why a Lobectomy?
Was a Lobectomy necessary because you were told why a Lung Wedge Resection would not be?

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I didn’t do my research. Inexplicably. But you had to be there. My ex husband had died of small cell 3 weeks prior and all I could think was to quickly and quietly take care of this so they’d never have to know. I have a nurse friend who took me there and brought me home and I told my grown Kids I was doing a girls trip. I figured 10 days and I’d be able to sneak back home and claim a cold or something.

Frankly, no one expected it to be malignant and the model spit out a liklihood of 23%. H told me he would take a small wedge with the nodule and send to pathology for the answer. He did also say that if it were malignant he would take the entire lobe but he had already prepped me that the odds were 3:1 against that outcome and I had no idea what a lobectomy implied really. He said the other lobe and right lung would pick up the slack ( I’m calling BS on that by the way.)
Because I had done no research in my misguided haste, I had no understanding of other options.

Without a doubt the period between diagnosis to recovery was a brain dead, full-out stupid event.

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