A 12-point checklist for newly diagnosed patients

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Peregrine
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A 12-point checklist for newly diagnosed patients

Postby Peregrine » Mon Sep 12, 2022 7:28 am

"Cancer: 12 nouveaux commandements pour avoir encore de meilleures chances de guérison "

Here is a 12-point checklist based on an article published recently in Europe. The following draft is a paraphrased English translation of the original document, with annotations added to fit the U.S. medical context.

"Cancer - The 12 New Commandments for Having a Better Chance for a Cure"

Our advice - Better screening methods and more efficient treatments have improved the survival of patients. Here are some recommendations for those who fight against cancer.

Reference: https://www.lefigaro.fr/sciences/cancer-les-12-nouveaux-commandements-pour-avoir-encore-plus-de-chances-de-guerir-20200221


1. Do not consent to undergo a specific treatment regimen on the basis of the recommendation of just a single specialist or a single surgeon. Any cancer treatment regimen (i.e., chemo, radiation, surgery, etc.) must be decided on during a multidisciplinary team meeting in which all of the specialists concerned are represented.

2. Make sure your attending physician (PCP) is the recipient of your whole hospital file and all of your special test results. Also, verify your level of access to the medical documents in your chart via your hospital portal account, since you may need to have access to your original medical documents throughout the course of your treatment and follow-up.

3a. Check the website of the National Cancer Institute (NCI), to determine if there is an NCI-designated Comprehensive Cancer Center near you -- one where you could get a professional second opinion, and one where you could even transfer all of your care if your insurance policy will cover it.


3b. Check the cancer ranking of your current hospital or clinic by accessing the latest U.S. News & World Report rankings for cancer hospitals:
You can shorten the list of displayed hospitals by specifying your location (i.e., state/province) on the search form.

4. If you have even the slightest doubt about the course of treatment proposed for you, do not hesitate to ask for a second opinion at a reputable hospital outside your current hospital network, especially if your confidence in the assigned doctor is low. (Note: It is not a good idea to get your second opinion locally from another doctor in the same hospital network, because doctors won't usually criticize or contradict their close colleagues.)

5. For surgery, ensure the cancer experience of the surgeon by verifying three points:

  1. Verify that the surgeon has an up-to-date Board Certification in colorectal cancer. This can be done by accessing the http://www.certificationmatters.org website:

  2. Verify that the surgeon's interest in colorectal surgery is focused on cancer, and not just on benign colorectal conditions like ulcerative colitis.This can sometimes be verified by reviewing the surgeon's webpage on the hospital website. (Note: There are indeed some colorectal surgeons who prefer not to deal with cancer patients. They just prefer to do the simple surgeries that don't require much attention to getting good surgical margins. etc.)
  3. Verify that the surgeon received his/her medical training at a reputable medical school and has had relevant advanced training in one or more specialties at a reputable institution. This can sometimes be determined by reviewing the surgeon's webpage.

6. For radiotherapy or chemotherapy, check that the Radiation Oncology Unit, and the Infusion Center have been properly certified by the relevant authorities and that the equipment they use is up-to-date and up to current standards.

7. If possible, be accompanied by a loved one during the first consultation with the cancerologist. It is important to have someone else present who can help record what was said and to help make sure all important questions were asked and answered.

8. Before choosing the establishment that will be responsible for your treatment and follow-up, do not hesitate to ask the following question of the attending physician: "And you, doctor, if you were in my situation, who would you go to see, and where would you want to be treated?"

9. In communications with medical staff, dare to say: "I didn't understand. Could you please repeat in simpler terms that I can understand"

10. Seek help from a qualified psycho-oncologist soon after the cancer diagnosis is announced.

11. Do not stop your currently prescribed treatments if you decide to take advantage of some alternative or complementary medicine.

12. Never take medication or food supplements on your own without the advice of the team that follows you.

rp1954
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Joined: Mon Jun 13, 2011 1:13 am

Day 1, Week 1

Postby rp1954 » Thu Sep 15, 2022 2:54 am

I would suggest several crucial steps for newly diagnosed patients that consider themselves motivated, pro-active or wanting to be "aggressive" in a meaningful, intelligent way. For high risk, advanced or metastatic colorectal cancers, you need every edge you can get.

1. get a more thorough set of commonly available blood tests, especially right after diagnosis, right before surgery(s), chemorad or RT; and after surgery(s).
- here are the additional initial blood tests we were looking for,
2. read the Life Extension Foundation articles on colorectal cancer, cancer surgery, and potential off label treatments.
3. consider additional advanced blood tests for immune function, molecular biology and chemosensitivity assays if you have time/support and good funding.
4. establish an informal neo-adjuvant immunotherapy, after doing #2 and getting 1-2 consults if possible. ASAP.
- This post tells part of what we used immediately, and added over the next two weeks with more information and supplies

There are medical papers to the effect that some common lab panels take on extra meanings and different clinical ranges once you are diagnosed with (advanced) colorectal cancer.

Cancer doesn't happen in a vacuum with only a single marker. Cancer has many blood panels and markers that are cause, effect or both. When a long series of expanded blood panels are combined skillfully with the growing global medical literature, more insights can be obtained, the cancer much more closely tracked and attacked. I think most CRC patients' chances are injured, starting on the day of diagnosis when they don't get better blood work and interpretations.

In our case, the extra data allowed us to track our progress; identify and eliminate chemo toxicity problems; develop and maintain an active chemo formula; and eventually, drive CEA, CA19-9 and AFP cancer markers lower, normal and flat - cancer markers that had been elevated and going out of control at different times while using few(er) scans.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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Peregrine
Posts: 106
Joined: Tue Mar 01, 2022 1:18 am

Re: A 12-point checklist for newly diagnosed patients

Postby Peregrine » Sat Sep 17, 2022 7:12 pm

rp1954 -

Thank you for your Day 1, Week 1 post, which was very concise and clear.

I sincerely hope that that post, as well as your earlier posts, receive the attention that they deserve from newly diagnosed patients.


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