JJH wrote:Gina -
There are a couple of things that you could do that, in my opinion, could make your current website even better.
- Your history of treatments / interventions.
You have created an excellent webpage succinctly summarizing your own history of treatments. However, this list may not be very relevant for some of the viewers of your website, in particular those who are not diagnosed KRAS 'wild-type' and not diagnosed MSS. You have mentioned a bit of your diagnosis profile near the top of the treatment-history page, but I think it would be better to be more explicit at the beginning about the fine details of your situation.
There are a dozen or more data items that help an oncologist define a patient's specific treatment trajectory, and you could spend some time at the top of the treatment-history page outlining in greater detail the specific CRC context of your treatment.
For example, here are some of the data items that set your case apart from other Stage IV cases.
- Context of diagnosis: Colonoscopy vs. emergency surgery For patients diagnosed with CRC, it is important to note whether the diagnosis came about through a normal screening colonoscopy, or whether it was the result of an emergency surgery to remove a blockage. In the latter case, the patient will have a reduced set of treatment options, and the timeframe for detailed treatment planning will have been compressed because of the emergency surgery. Emergency-surgery patients are left with a more difficult situation than patients who have had time for adequate consultations and have had sufficient time to request second-opinions about how to proceed.
- Location of the cancer. You were diagnosed with colon cancer, not rectal cancer. This can make a difference for various reasons, because there are separate NCCN treatment guidelines for colon cancer (CC) and rectal cancer (RC). It would be important at the outset for any viewers of your website who are rectal cancer patients to realize this difference.
- Type of cancer. Your diagnosis should also specify the type of cancer you have (e.g., adenocarcinoma, etc.), as well as its grade, so that the viewer can assess whether you have an ordinary type of colon cancer as opposed to a particularly aggressive type.
- KRAS/NRAS/BRAF mutation status. Your tumor was diagnosed as KRAS 'wild-type', which makes a big difference in what treatment options you have. In particular 'wild-type' status allows you to take targeted therapies like Vectibix or Erbitux. This means, among other things, that if a viewer of your website is diagnosed instead as KRAS-mutant (not KRAS 'wild-type'), then all of your discussions about Vectibix side effects, etc., are irrelevant to them because they will never be prescribed a drug like Vectibix. Newly diagnosed viewers of your website need to know about this distinction up front before they spend a lot of time reading about a type of chemotherapy they may never receive.
- MSI status. Your tumor was diagnosed as MSS, not MSI-H. This could be important for viewers to realize, because your list of potential MSS treatments could involve a different set of therapies from those available for MSI-H patients.
- Baseline CEA. CEA tested at the time of diagnosis could be very important to know, especially if it is very high. Baseline CEA is very important to measure before any kind of treatment intervention is attempted, because it might turn out to be a good marker for future recurrences.
- TNM staging code. You were diagnosed as Stage IV, but which level of Stage IV ? Stage IV-A? Stage IV-B? or Stage IV-C? And what about your N value -- How many regional lymph nodes were involved with cancer? It seems to me that you were diagnosed initially as Stage IV-A , i.e, The cancer has spread to a single distant part of the body, such as the liver or lungs (any T, any N, M1a), but it is still not clear what the T and N values were for your initial diagnosis.
- Location, size and distribution of metastases.At the time of initial diagnosis, it is important for Stage IV patients to be informed of the estimated extent of metastatic involvement, including how many different organ sites have mets, and for a given organ, how many mets are present, how large they are, and whether they are located in places considered "difficult" or inoperable. This can make a big difference for strategies for eventual removal of these mets -- if such removal is even possible.
- Comorbidities and general health of the patient. At the outset of treatment planning, it is important for the medical staff to obtain an assessment of the general health of the patient, including a list of important comorbities and conditions currently under treatment that could possibly influence which CRC treatment interventions might be implemented, This would also include autoimmune diseases, too. In your case, it appears that you did not have any other health problems that would have precluded certain CRC treatment interventions, but if you did have some such health problems, they should probably be identified up front.
- Family history of CRC or polyps. It is probably important to mention if you have any family history of colon cancer. Also, if you belong to an ethnic group that is known to have an elevated risk of colon cancer, it is probably good to mention this, too.
- Website links in your signature. It would be good if all website references in your signature contained a complete URL, starting with the required https prefix. For example, your reference to your favorite posts webpage should be indicated as https://weareallmadeofstars.net/favorite-posts so that it shows up as a clickable link that viewers can easily access. If it is only listed as weareallmadeofstars.net/favorite-posts then it won't appear as a clickable link
ginabewell wrote:Substack podcasts - where I open up conversations with me and my therapist, whose specialty is people with life-changing medical diagnoses, and use my personal experience to explore and normalize the things patients face emotionally (magical thinking, the guilt of what this does to my family, feeling lazy as physical ability is compromised, etc.) - here is where I would really value feedback on what types of topics would be of interest
JJH wrote:ginabewell wrote:Substack podcasts - where I open up conversations with me and my therapist, whose specialty is people with life-changing medical diagnoses, and use my personal experience to explore and normalize the things patients face emotionally (magical thinking, the guilt of what this does to my family, feeling lazy as physical ability is compromised, etc.) - here is where I would really value feedback on what types of topics would be of interest
Here are some suggestions:
- Podcast transcripts. If this substack is to be concentrated on podcasts, then I think, for obvious reasons, it would be a good idea to have a text-based transcript of every audio podcast posted in your substack. For example:
An example of this kind of thing would be some of the podcasts posted by the nursing staff on the M.D. Anderson Cancer Center website, -- podcasts that contain full-text transcriptions of the audio for the benefit of viewers who can read printed English but who cannot understand spoken English very well.
- Hierarchy of podcast themes. In the overview of your podcast library you could provide the viewer with a structure of your podcast themes.
For example, the podcasts could be arranged according to the various kinds of "loss" experienced after receiving a cancer diagnosis, and the therapist could then comment on ways of dealing with such losses.
- Physical losses.
Loss of job.
Loss of insurance coverage.
Loss/depletion of savings account.
Loss of physical energy
Loss of weight
Loss of muscle mass
Loss of sense of smell, taste
Loss of hair.
Loss of bowel control
Loss of sexual function
Loss of libido
Loss of sensitivity (peripheral neuropathy)
- Psychological losses.
- Emotional losses
Loss of positive self-image / body image
Loss of hope --> depression
Loss of sense of calm --> fear
Loss of sense of control over life events
Loss of old friends (who don't visit anymore)
Loss of a companion, spouse or caregiver who decides to leave or break away --> grief
Loss of previous support groups
Loss of confidence in medical team.
Loss of trust.
- Cognitive losses
Loss of short-term memory / long term memory
Loss/deterioration of logical reasoning ability ("dry brain" / "chemo brain")
Loss of sense of direction, sense of orientation.
Loss of interest; lassitude; general apathy.
Loss of faith.
As I’m editing the diagnosis post you just shared, I’m realizing I would like to maintain some of your key points and frankly credit you as the type of resource I encountered on the Colon Club, which I have been trying to figure out how to best incorporate into the blog.
Assuming you’re ok with that, at minimum, would you be willing to confirm whether you are a him or a her? Alternately, if you would want to share your name and/context behind your expertise, feel free to PM me and we can work out what you would be comfortable with, if anything.
ginabeewell wrote:Right now I’m editing your post ... if you are willing to make sure I am communicating those [edits] appropriately I would be very grateful.
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