Example & Experience of A 2nd Opinion-@ Mayo Clinics
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Sorry, I have not been able to send the picture to Rick as of yet. It will be posted on our blog: The loose leaf notebook. I promise.
Hugs,
MarionI love Lainey’s description of you as a “light in a very dark tunnel”! Knowing how far you go back with Lainey, Marion and the others, I definitely feel honored to have met you in person (and shared a lovely meal!) in San Francisco at the GI ASCO. Your generous and open spirit and knowledge touches all. I hope that sharing your story is also helping your spirit as well.
That said, I’m really glad that you are so proactive and are seeking multiple opinions. Sounds like you found some doctors who are truly thinking “outside the box”. When will you have the RFA again?
XO
WillowI love Lainey’s description if you as a “light in a very dark tunnel”. Knowing how far you go back with the others on this board I definitely feel honored to have met you in person (and shared a lovely meal!) in San Francisco at the GI ASCO. Your generous and open spirit touches all and I hope that sharing your story is also helping you as well.
That said, I’m really glad that you are proactive and seeking multiple opinions. Sounds like you found some doctors who are truly thinking “outside the box”. When will you have the RFA again?
XO
WillowPercy….that again emphasizes the importance of patient knowledge and understanding of this disease. Sure, not everyone is able to understand the clinical aspects of this disease however; it is of utmost importance to seek out experts for interpretation of test results.
Thank you for helping us understand the complexity of this cancer and the incredible service you provide to the patient community at large.
Hugs,
MarionPercy, that was some kind of report. I was also wondering how they knew the Ablation was not complete. I feel so bad that you are like a human guinea pig for everyone! BUT I also know that you are very strong and we thank you for being a light in leading the way through this dark tunnel. I am so honored to ‘almost’ know you and hope to meet you someday!
Hi, Marion,
They looked at the RFA treated site done in my local hospital and found incomplete burns of the tumor. The tumor shown rough irregular edges especially on the side of the tumor closed to the hepatic vein. That either means the tumor have regrown or the microwave ablation done previously was incomplete.The doctors there thought incomplete RFA was most likely the reason due to the difficult location. The PET scans,2 in a row with each two months apart, did not show improvement ; the radiologist at my local hospital who read my PET said the tumor was stable due to the relatively unchange of the SUVmax value.
But it was the relatively same SUVmax value made me worry, it should went down or decrease in a bigger % point even if account for the inflammation of the surrounding area of the tumor after ablation,I think.;plus the CA19-9 double the value between the two PET scans(37 vs 61) and therefore all of these findings prompted my action for a 2nd opinion right away.
It was always back in my mind that if I will ever have a 2nd opinion visit again, I will document it and let those patients and caregivers know what actually a 2nd opinion is and how it will go. so they will have an idea of what a 2nd opinion is and I am happy I have done so.I really believe knowledge is the key and if not, they will just recommended GEN/CIS to me on the spot and will not go though a more search of treatment alternative for me.With regard to the liver enzymes ,all are at the low end of the normal range.and that is a good sign.
God bless.
Percy…as always your reports are highly informative. I have a few questions:
How do they know that the previous ablation was not successful? Did they determine growth within the ablated or the surrounding area? What were the results of the liver function test?
Hugs,
MarionHi, everyone,
the following is for someone who wonder what a 2nd opinion is and how ,in general, what the experience is or will be.
After 2PET scans (2 month apart each) indicated “Stable” after microwave ablation; and Ca19-9 went up from 37 to 61; I called Mayo for a 2nd opinion on what to do next. Here was what happened:
1. Fasting the night before.
2. 1st day upon arrival in the morning went to the lab and get the lab work CBC,BMP ,Ca19-9 etc. done. then eat lunch at the cafe.
3. MRI @ 5pm.-last about an hour( no food were allowed 4hr prior to the scan.)
4. the next morning at 1pm,started with GI specialist Dr. Roberts Lewis for consult to map out the plan of treatment after seeing all the specialist below .Dr. Roberts suspected the microwave ablation that I have had done at the local hospital was not complete and therefore the tumor started to grow again even the PET scan indicated the tumor was “STABLE”.(base on MRI scan)
5. 2:30pm saw liver surgeon to rule out resection due to lymph node mets. But he indicated Microwave ablation may be an option for the tumor in the liver and the result is comparable with surgery ; in the future,may be SBRT for the lymph node mets but now was too small to do so.chemotherapy should take care of the lymph node.
The most important thing he said is to keep the liver function normal as long as possible and therefore the lymph node metastasis was not a big concern at this moment.
6. 3pm Dr. Roberts were back in again and had a phone consult with the interventional radiologist and both agreed with microwave ablation as an option;but they would wait for the opinion of the medical oncologist and the radiation oncologist to make the final decision.
7. Next day at 9am, medical oncology consult started with a nurse practitioner(NP) to gather medical history,medication list etc.and discussed chemotherapy options including recommendation for GEM/CIS; but I refused and asked how about Gemox? She said there were not enough good responses from patients who got GEMOX at Mayo, so she will not recommend GEMOX. she mentioned I could use Gemzar and Xeloda again but in combination with other chemotherapy agents and not as monotherapy as I did before.Currently, there is NO clinical trial at Mayo for cholangiocarcinoma Irinotecan ,Taxol are other options she had mentioned.
Since the NP knew I preferred a more personalized medicine approach base on Target NOW and Foundation ONE ,(NGS-the next generation sequencing gene profile.)after she consulted with the medical oncologist for a while,He,
the oncologist came in and told me that both the lymph node mets and the tumor in the liver would have impact on my life span; combination therapy would be used for the maximum effects. Tarceva may not be a go to drug now but I should continue it until they(the oncologists) will make the final decision by e consult with Dr. R. Mcwilliams next Monday. I think he is the go to guy for finding actionable treatment plan base on those NGS reports if there is any. Therefore NO chemotherapy will be recommended at this time.I asked about immunotherapy like PD-1; He told me the future of immunotherapy is bright and will be a promising potential treatment agent for other cancers . In the next 1-2 years, some of them will be approved and the oncologists can use them “off labels” for cholangiocarcinoma. But he indicated that immunotherapy for GI cancers did not have a strong record of success(ie: IL2 in colon cancer);and it may due to the low volume but consistent recurrence and the difference in each patient’s case .
8. 11am; saw radiation oncologist, he indicated SBRT treatment was not recommended this time; microwave ablation would be appropriate.They also explained how SBRT would be done if needed.
9. Dr. Roberts e mailed me later indicated they will make a final decision after Dr. McWilliams ‘s consult. Most likely I will have the microwave ablation done up at Mayo followed by systemic chemotherapy and/or targeted therapy
afterwards.God bless.
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