Do any of you have experience in the cancer forums? Are there any that you recommend?
A good friend of mine is in the initial stages of a cancer diagnosis. She has very little experience with having medical problems since she is in her early 40’s. But, her dad and I are insulin-dependent diabetics, so she has a lot of experience with OTHER people’s medical problems. I think that diagnosis is pretty traumatic and she’s basically in crisis trying to process the unknown.
I feel like the internet is NOT a safe place for people in crisis. In general, its a place where vulnerable people can be easily exploited. I’ve been looking at the apps and forums related to cancer and some of them don’t get any responses to their posts (except from an AI chat bot or a moderator). There appear to be some good in person groups, locally. But, I fear that it might be super triggering to travel and meet people in person, just yet. I don’t think that facebook sites are as good as our forum because fb isn’t built for in depth conversation.
She’s going to need to learn a lot, fast. What are your thoughts about the cancer forums? Another good friend of mine has had great luck in the online communities for visual impairment. He has made relationships there and could tell you all about which ones are fun and which ones aren’t.
Any feedback from the experts of internet advocacy would be appreciated. I found a good podcast that seems applicable, as a start. "Cancer is Trauma" with Dr. Lillian Walker Shelton and Kristin Tanner by Cervivor Podcast
There are so many forms of cancer, so there is quite a variety.
I found a local group that I still meet up with, at a annual luncheon provided by cancer organization.
I was dx 10 years ago, and no re-occurance, and with covid, some gatherings were canceled.
Here is one link that lists Cancer support groups/orgs. May be a good start.
Or ask the medical staff for recommendations.
What type of Cancer? I do not need to know. But if you look in the 18+ forums on this site and if her type is covered, I promise she will be well cared for.
Not all cancers are covered, but 3-4 types form communities.
Your details are hidden Mine were until recently.
Thanks, guys. I can’t overwhelm her with information. She’s just gotta get through the week, but maybe if I have a list of resources (which I have started accumulating), I can send assistance little by little, here and there.
There’s so much procedural knowledge about HOW to keep track of medical records and billing. She could accidentally cap out the policy…depending on what this is. My worst fear is that they loose their home, but I can’t bring that up.
I ought to remember these exists:
The Oncology unit she is being seen at will have a lot of resources for patients. That will be a good start. They may even have someone who can help with navigating her insurance benefits. Some offer a mental health counselor that can meet with her, and give her tools to cope. A support group where she can meet other people that have cancer can give her support, compassion, and understanding; don’t discount it without at least attending one session.
I assume the US, I don’t know about CA. The ACA changed all this. Firstly the “lifetime caps” were made illegal, secondly the yearly “out of pocket maximum” was limited to a lower number; prior to the ACA my out-of-pocket max was $30,000 and I had to come up with that amount every year…
That happened immediately with self-insured plans but there was a long, and extended, period for employer plans when the employers were allowed to provide plans that didn’t meet the rules. So far as I am aware that ceased around 4 years ago, however the government then allowed plans which didn’t meet the ACA requirements to be marketed (“the best government money can buy” etc).
So do you worry about this; people who have a reasonable knowledge of US insurance can get it and it doesn’t have these problems any more. People who ended up being conned by the “cheap” insurance policies may find they can switch to an ACA plan without penalty; another thing that was abolished was the “pre-existing condition” stuff (which is why dialysis is no longer covered under Medicare). Those people should certainly explore their options before the end of December!
It’s sill possible to lose your home but the requirements to do so are that you can’t afford to pay around $7,000/year on medical matters. That’s common but normally for people who don’t own homes.
There used to be a wonderful list-serve called acor.org, but they closed. However, some of their lists are still active. I could try to find one if I knew the type of cancer, Mohe. I used them for Cancer of Unknown Primary (CUP) and Bladder cancer, and I found that the people posting there were extremely knowledgeable. Haven’t needed to use them for a while, but I still belong to those two groups and through them I may be able to find the appropriate list serve. If you find out what type of cancer, let me know and I’ll see what I can find in terms of the old acor.org lists.
And please let your friend know that, scary as the word cancer is, keep her hopes up. There is more often than not life after cancer these days. The CUP that I had lists a lower than 20% survival rate after 5 years, and I’m going on 22 years now, and 18 years after bladder cancer (although that might be back…surgery next week to find out if it’s nothing, or a recurrence. Probably nothing.)
Hugs to you and your friend,
Thanks, everybody. Its cervical cancer. I’ll need to refer back to this info occasionally. So much with insurance has changed. It’s good to know that some concerns are unfounded. No new information yet. Some minor floundering w/ insurance trying to find an in-network Doc. There’s gonna be some boo-boos like this because everybody’s under stress.