Improving Cancer Care Communication and Information Sharing

I agree it is exhausting…. So many cooks in the kitchen BUT in my case I loved every cook in my kitchen and felt they were walking beside me through my whole journey. I’m in Indianapolis which is not an “it” town…. Point being that if you are not happy with your treatment ask others for recs. Unfortunately everyone knows someone with BC and personal experiences might lead you to a new kitchen of cooks! Good luck

This is an awesome idea! I’m also sick of the changes in drs. I got rid of my first oncologist because he wasn’t listening to me..too busy pushing his usual protocol. I met the new oncologist once and was due for a f/u on Sept 4 after rad treatments. They called today to reschedule as that Dr had an emergency appt but they also changed person I’ll see…a new NP. How are we supposed to feel any connectivity when we don’t see the same people?

Totally agree. Like with the aromatase inhibitors, you are told you will only have to take a pill. The oncology team fails to go over the side effects that can change you the rest of your life. When a side effect says, you may have these after stopping medication. What does irreversible mean?.... We treat the symptoms, they say or switch to another pill. I just can not wrap my head around these medications and I am angry that this is what the have to offer. They can make a vaccine for so many things in a year, but can't come up with better meditation than these. If the researchers took this stuff, I bet they would find something better soon.

I agree! My Amazon order delivered today! "Good Energy" by Casey Means MD!

I am amazed at the conversations shared here that sadly but accurately reflect the status of the US health care system across the board...I am a physician and during my many years of practice I heard such concerns repeatedly- with a small amount of cynicism I would reply that the best answer to dealing with this system is to " not need it"!!! And then at age 76 without history, symptoms or warning I was diagnosed with Stage III ER+ breast cancer- but I was very lucky- I called a friend, best breast surgeon in the southeast and she became my " patient advocate " as well as primary physician- the one thing she said at the beginning was, I would have a difficult time navigating this because "they don't practice medicine the way you and I were trained =emphasis on communication and patient support and respect " but she added " we are going for a cure"...chemo, bilateral mastectomy and radiation- now on AI ( with side effects) and ctDNA every 6 months... and daily Manuka honey (anti-inflammatory and a bunch of other good stuff)... so continue to speak up- as the politics in this country continue to demonstrate, there is a foundation of people wishing to disenfranchise women and remove any and all of our health care choices - don't let that happen- it may not be the choice others would make but it is yours for YOU...Hope this helps...

I have radiation dermatitis on my chest and am using Manuka Honey gauze pads! Had never heard of it but a friend turned me on to it.

I am 77+ yrs. Been dealing with b.c. For 22years. 2002, DCIS. Lumpectomy and radiation with brachytherapy. In 2015 diagnosed with ER/PR+ Stage III 4 lymph nodes. Had mastectomy, chemotherapy and AI’s in 2015. Terrible side-effects from AI’s so after 3+yrs switched to Tamoxifen for 4 years. Then, June 2024, single cancerous axillary lymph node removed…back on AI’s. PT/CT shows no other detectable cancer. Comprehensive radiation recommended but at age 77+ I am concerned re: side effects and QOL diminishing further. Any comments about typical radiation side effects or radiation in elderly population would be helpful. (Thank you for this wonderful conversation and resource.)

I am now 83. Had 30 rounds of radiation without any problem. They put me on Verzenio but I couldn't stay awake so I refused it. Now I am on anastrozole and I have trouble sleeping.

My concern is MBC patients are treated as “longevity” but not the cure. We deserve more than standard treatments with no path to curing this. I have no symptoms beyond chemo pills burns and still cannot get an aggressive treatment to attack this. Any new treatment is given without a path or new information is making me nervous about the future I have. Trusting the doctors are getting harder since they just follow standard protocols

Saundra M, would you mind sharing more info about the Manuka honey? I was diagnosed 17 yrs ago with Stage 1 ER/PR+ HER2-. In June 2023 I was diagnosed with Stage 4 MBC to the bones. My husband had read that Manuka honey helped with inflammation, but we don’t really know how to use it to reap the benefits. Would love to know how you “take” (eat) it! Thank you!

I put the Manuka honey in my tea. Sometimes in other stuff.

Here is a link I was given when I reached out to them with similar questions... I use a heaping teaspoon each morning in my tea or coffee... they have other suggestions and their customer service is very responsive...https://www.manukadoctor.co.uk/blogs/content/what-is-manuka-honey

Thank you so much for the information on Manuka honey! Do you, or anyone, have a particular brand you’d recommend?

I have always used Bees and Trees out of New Zealand and never disappointed...Bees & Trees Manuka Honey https://www.beesandtrees.com... another colleague has shared some evolving information on Soursop fruit as a significant health benefit for this challenge we are in ...search around... when I have more info to share I will...

Yes, please share when you get updates! Thank you so much Saundra

Saundra, what size jar, or MGO/kg, do you buy? Do you get the highest MGO?

This perspective highlights such an important gap in cancer care - the need for better communication tools and systematic information sharing between medical teams and patients. Many in the cancer community share similar experiences with feeling like crucial details get lost or questions go unanswered between appointments. The idea of structured frameworks and reliable follow-up systems could really help patients feel more informed and empowered in their care journey. What specific communication improvements have others found most helpful when advocating for better information sharing with their treatment teams?