Seeking Online Second Opinion for Colon Cancer Treatment

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CancerWarrior_23
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Joined: Sun Mar 26, 2023 8:40 pm

Seeking Online Second Opinion for Colon Cancer Treatment

Postby CancerWarrior_23 » Tue Apr 11, 2023 11:16 pm

Hi everyone,

I hope this message finds you well. I am writing on behalf of my brother, who has recently been diagnosed with colon cancer. We currently reside outside of the United States, and we have some concerns about the quality of care provided by our local medical staff. Therefore, we are seeking an online second opinion from trusted oncologists or cancer hospitals that offer this service.

My brother's recent tests and examinations include a CT scan on April 10, 2023, and a pathology report on 06/Mar/2023 confirming invasive adenocarcinoma (moderately differentiated) in the sigmoid colon. The CT scan results indicate a sigmoid colon mass with enlarged regional and mesenteric lymph nodes, hepatomegaly with multiple liver metastases, and nonspecific lung micronodules. He has received cycle 1 of FOLFOX (with a 20% dose reduction) in combination with Avastin on 28-03- 2023 as part of his current treatment plan. Today, he has started the second cycle of his treatment, but I do not have more details about it at this moment.

We would greatly appreciate any recommendations or guidance on where to find reputable oncologists or cancer hospitals that can provide an online second opinion for my brother's case. We hope to share his test results and gather additional insights on the most appropriate treatment plan for his condition, considering the therapy he has already started.

Any assistance or direction in finding a reliable and knowledgeable source for an online second opinion would be invaluable to our family. We aim to make the most informed decisions for my brother's care and ensure he receives the best possible treatment.

Thank you for your time and consideration.
CancerWarrior_23
36M, diagnosed with moderately differentiated invasive adenocarcinoma in sigmoid colon (biopsy on 06/Mar/2023). Multiple hepatic lesions suggestive of liver metastasis (CT Abdomen on 02/Mar/2023) and nonspecific lung micronodules (CT Chest on 02/Mar/2023). Prostate lesion detected in abdominal ultrasound (15/Feb/2023) but not in CT scan (16/Feb/2023). Undergoing treatment with FOLFOX (20% dose reduction) and Avastin; started cycle 1 on 28/Mar/2023 and cycle 2 on 11/April/2023.

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Jacques
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Location: Occitanie

Re: Seeking Online Second Opinion for Colon Cancer Treatment

Postby Jacques » Wed Apr 12, 2023 2:25 am

CancerWarrior_23 wrote:Hi everyone,
...
We would greatly appreciate any recommendations or guidance on where to find reputable oncologists or cancer hospitals that can provide an online second opinion for my brother's case. We hope to share his test results and gather additional insights on the most appropriate treatment plan for his condition, considering the therapy he has already started.
....
Thank you for your time and consideration.
CancerWarrior_23

As I understand it, your brother wants to get a second opinion on the best treatment plan for him to follow from this point onward, but he wants to do everything by remote without having to show up in person at the facility where the second-opinion doctors are located.

This might be possible, but there are some considerations to be taken into account at the outset.

1. Try to focus on a comprehensive cancer center that has in-house expertise in all of the relevant areas In your brother's case. This would probably be one of the top ten cancer centers near you. You can read this web page from MSKCC in Manhattan if you haven't seen it already.

https://www.mskcc.org/news/8-things-you-should-know-about-getting-second-opinion-after-cancer-diagnosis

2. Try to avoid the fly-by-night specialized websites that advertise second-opinions but are not connected with a reputable cancer center.

3. The process will be easier if your brother's hospital has all of its medical records digitized and stored in a central database. This will allow all of his medical records to be downloaded as a single zip file and sent electronically to the second-opinion hospital. The process is much slower if your brother's hospital does not have a centralized digitized database.

4. Your brother will probably need to get a "first-opinion" cover letter from his oncologist describing what the initial diagnosis is and what the treatment plan currently is. He cannot just send the documents off without this letter.

5. There are a number of other considerations, I'm sure, but it would be best to hear directly from others here who have gone through this procedure and have found it useful.

6. In my opinion, the file needs to be as complete as possible when it is sent off. It must have "MSI status" and "KRAS/NRAS/BRAF tumor mutation status", for example, otherwise they probably won't even consider evaluating it. Also, since the diagnosis includes hepatomegaly, then they will probably want to have all of the kinds of tests that are usually done to determine the likely cause of that. See this document for some of the details on hepatomegaly.

https://www.webmd.com/hepatitis/enlarged-liver-causes

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Seeking Online Second Opinion for Colon Cancer Treatment

Postby Rock_Robster » Wed Apr 12, 2023 4:14 am

You’ve received some very good guidance above.

I got Remote Second Opinions from both MSK and Dana-Farber / MGH. Each one cost around $1500 - 2000, and was done entirely virtually. The MSK opinion was quite good, and comprehensive, if not as somewhat negative in tone. I suspect I would have received a more aggressive approach if I attended in person. However it largely validated the proposed treatment approach of my home doctor, and said I would need to attend the hospital in person for any further information.

The Dana-Farber / MGH response was very weak, largely quoting 20+ year old research and suggesting palliative management (I was curative at the time). I would save your money on this one.

Note that I’m not aware of any clinic that will give you a surgical opinion remotely, as they need to physically assess the patient and also often need to do their own imaging. Unfortunately, this is often the most crucial area to get gold-standard advice on.

Best of luck,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

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Jacques
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Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Seeking Online Second Opinion for Colon Cancer Treatment

Postby Jacques » Wed Apr 12, 2023 11:50 pm

I think that the best way to help your brother with the second-opinion issue is for you to use your excellent writing skills to help him draft a concise and convincing letter (i.e., "Re: Second-opinion request") to accompany his submitted medical file.

This would require some serious thought about what he can realistically request, given his current diagnosis and the (probably incomplete) state of his current medical file.

In my opinion, the world-class experts at the second-opinion hospital are not going to want to seriously consider a medical file that is incomplete or carelessly prepared. It's not worth their while to try to second-guess the patient's situation in the absence of informaton that they deem critical for a proper analysis.

Thus, I think that the first contact with a potential second-opinion hospital would be to ask them what exactly they will need to have in the submitted file in order to carry out a second opinion without delay. The second opinon your brother would be requesting would be to see if his current status of "Only palliative care treatment possible" could somehow be upgraded to something like "Tumor burden reduction/stabilization procedures are indeed possible with the intent to treat CRC as a chronic disease". I don't know the correct terminology to use, but there must be some way to say that your brother would like to explore the opportunities available for converting a passive "palliative" treatment situation into an active "treatment with an intent to improve" situation. He shouldn't have to be stigmatized as a "palliative care" patient when there might be some doctors somewhere who would see his situation otherwise and could propose an action plan to be followed.

CancerWarrior_23
Posts: 10
Joined: Sun Mar 26, 2023 8:40 pm

Re: Seeking Online Second Opinion for Colon Cancer Treatment

Postby CancerWarrior_23 » Thu Apr 13, 2023 7:56 pm

Jacques wrote:I think that the best way to help your brother with the second-opinion issue is for you to use your excellent writing skills to help him draft a concise and convincing letter (i.e., "Re: Second-opinion request") to accompany his submitted medical file.

This would require some serious thought about what he can realistically request, given his current diagnosis and the (probably incomplete) state of his current medical file.

In my opinion, the world-class experts at the second-opinion hospital are not going to want to seriously consider a medical file that is incomplete or carelessly prepared. It's not worth their while to try to second-guess the patient's situation in the absence of informaton that they deem critical for a proper analysis.

Thus, I think that the first contact with a potential second-opinion hospital would be to ask them what exactly they will need to have in the submitted file in order to carry out a second opinion without delay. The second opinon your brother would be requesting would be to see if his current status of "Only palliative care treatment possible" could somehow be upgraded to something like "Tumor burden reduction/stabilization procedures are indeed possible with the intent to treat CRC as a chronic disease". I don't know the correct terminology to use, but there must be some way to say that your brother would like to explore the opportunities available for converting a passive "palliative" treatment situation into an active "treatment with an intent to improve" situation. He shouldn't have to be stigmatized as a "palliative care" patient when there might be some doctors somewhere who would see his situation otherwise and could propose an action plan to be followed.




Dear Jacques,

I wanted to express my sincere gratitude for your thoughtful and detailed advice on helping my brother with his second-opinion issue. I truly appreciate your care and concern, and I cannot thank you enough for your guidance.

Please understand that I am currently away from my brother, who does not speak English. As a result, I have been trying my best to understand his medical updates and share them with this wonderful community in English. The process has been challenging, as some information is quite difficult to comprehend.

Regarding my brother's second treatment cycle, Regarding my brother's second treatment cycle, he has remained hospitalised until now, and informed me that he generally feels well. However, he has lost his appetite for food and sometimes experiences abdominal discomfort after eating. He mentioned stopping his medications (Megamox 625, Zoron 8 mg, Nexium 20, Premosan, and Laxal). This coming Monday, he has an appointment with another doctor to discuss continuing his treatment.

I also wanted to update you regarding the "Baseline CEA," "MSI status," and "KRAS/NRAS/BRAF" tests you inquired about. My brother's current doctor is away from him, but they are scheduled to meet this Friday. I will encourage my brother to ask the doctor for updates on these test results so that we can better understand his situation.

As someone who has already provided valuable insights, I would like to ask you what additional information you would want if you were a doctor assessing my brother's case. So far, he has undergone a postcontrast enhanced CT scan of the chest, abdomen, and pelvis, an endoscopic sigmoid colon biopsy for pathological examination, and has started FOLFOX chemotherapy with Avastin. Any further guidance on what we should ask the doctor or look into would be greatly appreciated.

My family and I are doing our best to research and gather information on my brother's condition, but our knowledge is limited, as we only received this news in late February. I will try to update my signature once I have a better understanding of the situation.

Once again, thank you for your invaluable advice
36M, diagnosed with moderately differentiated invasive adenocarcinoma in sigmoid colon (biopsy on 06/Mar/2023). Multiple hepatic lesions suggestive of liver metastasis (CT Abdomen on 02/Mar/2023) and nonspecific lung micronodules (CT Chest on 02/Mar/2023). Prostate lesion detected in abdominal ultrasound (15/Feb/2023) but not in CT scan (16/Feb/2023). Undergoing treatment with FOLFOX (20% dose reduction) and Avastin; started cycle 1 on 28/Mar/2023 and cycle 2 on 11/April/2023.

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Jacques
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Location: Occitanie

Re: Seeking Online Second Opinion for Colon Cancer Treatment

Postby Jacques » Fri Apr 14, 2023 7:35 am

CancerWarrior_23 wrote:... I would like to ask you what additional information you would want if you were a doctor assessing my brother's case. So far, he has undergone a postcontrast enhanced CT scan of the chest, abdomen, and pelvis, an endoscopic sigmoid colon biopsy for pathological examination, and has started FOLFOX chemotherapy with Avastin. Any further guidance on what we should ask the doctor or look into would be greatly appreciated...

Thank you for posting the latest information on your brother's situation.

Offhand, I would say that the following bits of information might be useful for a doctor assessing your brother's case.

1. Body mass index. The doctor might want to know the patient's height and weight to determine the patient's Body Mass Index. This is needed to to see where he stands with respect to obesity and overweight, which might be relevant for understanding the "fatty liver syndrome" that your brother seems to have.

BMI Calculator
https://www.calculator.net/bmi-calculator.html

viewtopic.php?f=1&t=46365&p=340274#p340274
.
2. Family history of cancer. The doctor might want to know if there is a history of cancer in your family.

3.The doctor might want to know if your brother has been a smoker at any time in the past, or if he has had a bad chest cold sometime in the past, or if he has worked in a very dusty, polluted environment in the past. This is to try to understand why he has some small nodules in his lungs.

4. The doctor might want to know what your brother's typical food/beverage intake has been over the past 5 or 10 years. For example, has he been a junk food addict, eating mainly fast-food items, high sugar soda pop, deep fried fatty items, etc. This is to try to understand why your brother developed an enlarged fatty liver.

5. The doctor would probably want to know what the liver surgeons would say about the possible resectability of the liver mets. What would it take in terms of chemotherapy to reduce the tumor burden in the impacted liver lobes to such an extent that the remaining mets in the liver could be removed by surgery, ablation, radiation or some other means? See the article below for the various resectability criteria:

Resectability and Ablatability Criteria for the Treatment of Liver Only Colorectal Metastases
https://pubmed.ncbi.nlm.nih.gov/32635230


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