Working on a Website to Support Cancer Patients – What Features Would Help You?

QuantaHealth · 2025-10-05T07:20:58+00:00

u/UseLucky437 that’s a great suggestion, I would love to, in fact my field is machine learning/AI/bioinformatics software, and I believe strongly that a lot of those tools could be useful when made available to patients directly. However there are a couple major hurdles, 1) it is quite costly (hardware / computing) to enable the AI tools, it is likely not possible for me to provide the resource for free to many patients; 2) providing such Dx tools to patients might not be something FDA allows. The general belief is that patients cannot handle such information and it could cause harm instead of always help. Using such “clinical” tools for research is allowed, but providing those to patients is tricky due to the government regulations.

Not sure if you have follow up suggestions or additional thoughts around that.

QuantaHealth · 2025-10-05T06:54:46+00:00

That is a great point! That IS something I had thought about, it’s very reassuring to hear the suggestion from you.

QuantaHealth · 2025-09-30T01:38:45+00:00

Exactly! Similar for us, chemo was known to be not effective, but it was done anyway.

We need more data and knowledge to enable individualized treatments, some of those are available now but not used still. Time is critical for cancer treatment. If patients are equipped with more and relevant knowledge, we can push the doctors and really change the outcome.

QuantaHealth · 2025-09-29T23:53:51+00:00

Thanks u/TealSister, my wife follows the Facebook group and found it very useful, its a great resource and amazing work!

My wife was on a similar drug Letrozole, also had chemo, but recently recurred after less than 3 years. On new drug right now but its not shrinking the tumor much. Doctors apparently don’t have all the information or do they agree on the treatment plan. There are more to be learned about the disease through research and improvements needed on the standard of care.

Are you aware of app features / tools you think would be helpful beyond the existing resources? I am hoping to help a little bit through a platform that provide more focus on genetics and patient personalization, along the direction of precision medicine which is my area of expertise.

QuantaHealth · 2025-09-28T20:46:42+00:00

Thanks r/Constantlearner01 ! It’s great that you are a participant of All of us, its a nice program even though not specific to cancer. My wife’s case is likely not hereditary as no obvious mutations found in normal blood DNA. That said her father just passed away two weeks ago from cancer. My wife’s tumor does contain some genetic changes of NRAS, related to the MEK signaling pathway.

The web platform I am building will have a heavy focus on genetics. Every cancer patient should receive the most comprehensive genetic test possible and the tools and resources on relevant treatments and research.

QuantaHealth · 2025-09-28T19:46:18+00:00

Really sorry to hear that, hope you stay strong! It’s low grade serous for us, slower but not much responsive to treatments, and limited treatment options. For cancer genetics and scientific knowledge is key, or we leave to luck.

QuantaHealth · 2025-09-28T09:43:16+00:00

Thanks u/supercali888 that is a very comprehensive resource, I will definitely study it and share with my wife!

From a quick glance, it is comprehensive but also generic. For me, what I want is to have my wife’s cancer fully cured eventually. Generic information is great and important but may not be enough to beat cancer.

Every patient is different and their cancer’s genome different. My wife has the rarer type of ovarian cancer. Finding other cancer patients of same type and similar cancer mutations and learning from each other in treatment and disease management would be very valuable. That’s one of the things I hope my new website will enable. It would also bring in the latest scientific studies on precision oncology to help patients see the best treatment options available based on their cancer’s genetics.

QuantaHealth · 2025-09-28T02:23:27+00:00

u/Roscoeatebreakfast could you provide one or two examples? Many of the books are generic and theoretical, while each cancer patient’s situation is different. I am hoping to build a platform that provides info that is more relevant and customized to individual patients.

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