TinaFish wrote:All great advice. Thank you so much. I hope no one ever feels like their advice isn't welcome by me. My life is at stake here - I am so lucky to have you kind people taking time out of your day to help me. I will definitely be seeing a hepatobiliary surgeon for his/her opinion.
Jacques wrote:Are there any Stage IV patients/caregivers here who can explain what is involved in getting a second opinion on unresectable liver mets in the U.S.?
What kind of documents/paperwork are required in order to set up a second-opinion consultation? What does it cost? Can a patient request the consultation to be with with a specific doctor, or are you just assigned whatever doctor the hospital wants to assign? It's not clear to me how the system works in the U.S.
It is my impression that one of the required documents for a Second Opinion is an official "First Opinion" , i.e, a written document signed by a doctor saying that, in his/her opinion, the patient's liver is or is not resectable.
MetastaticEquilibria wrote:Siti wrote:P/S: we live in Amsterdam and will be getting treated at the NKI. We were considering getting treated at MSK or MD Anderson if things don’t go well here but we were told that the medical bill would be in the millions of dollars! Is that true?
You can get rough prices from them — look for their “International Patient” inquiry portals. I have done this (I am in Japan), and my recollection is that most procedures were in the high-tens to low-hundreds of thousands of dollars for a cash-basis patient. One procedure means something like surgery or a full course of radiation or chemo. They can review your case and give an estimate up front, which you pay before they begin treatment.
Generally, I concluded it doesn’t make sense to go to them (if you can even afford them) unless you want access to something they specialize in that you cannot get, or would have a hard time getting done, in your country. For example, HAI pump at MSK, or a wide variety of clinical trials at MDA.
Add: you can also request a remote second opinion from them for a-couple-to-a-few thousand dollars. You’ll need to get all your medical records, scans, etc. to them, and everything needs to be translated into English. This might at least put your mind at ease if they concur with your current plan of treatment.
MetastaticEquilibria wrote:...Though if you are asking for TinaFish instead of for you (if your sig is up to date), this may be irrelevant ...
Age & Sex
DX: Rectal Cancer (RC) or Colon Cancer (CC)
Tumor Location: If RC, then upper, middle or lower rectum, and distance from anal verge. If CC, then ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
Tumor size: (in mm or cm)
G1: Well differentiated (low grade)TNM code: e,g, T3N0M0, etc
G2: Moderately differentiated (intermediate grade)
G3: Poorly differentiated (high grade)
G4: Undifferentiated (high grade)
Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
Number of cancerous lymph nodes:
Mets: Location and number of metastases, (e.g., number of mets to liver, mets to lungs, etc)
Baseline CEA value:
Lymphovascular invasion (LVI) (if known): present vs. absent
Perineural invasion (PNI) (if known): present vs. absent
Surgical margins: clear or involved
MSI status e.g., MSS
Lynch status(if known)
Primary surgery type:
LAR, ULAR, TME, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectory, colectomy, hemi-colectomy, sigmoid-colectomy, etc...Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
Radiation therapy (if any): Chemo/rad
Chemotherapy : e.g., XELOX, CAPEOX, FOLFOX, etc.
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