What topics/experts would you like to see on The Breastcancer.org Podcast?

The value of blood test looking for breast cancer in very early stage or high grade dcis

Spread the word about FES Pet Scans for estrogen positive cancers. They show what normal PET scans miss, like lymph nodes, as in my case.

FES PET (Fluorodeoxyglucose-Estradiol Positron Emission Tomography) scan is a nuclear medicine imaging technique that uses a radioactive tracer to detect estrogen receptor (ER)-positive breast cancer. 

Yes, but for people like me, who are 8 years out and are not on hormone therapy, this test could have changed the outcome for the better. Honestly, I can't understand why it wouldn't automatically be ordered after a confirmation of EST+ cancer.

I might be missing it in the line-up, but I'd appreciate some information on how others who are triple positive are approaching life after active treatment when they can't take AIs or Tamoxifen. What I was first diagnosed with was aggressive at 90% ER+. I've been given nothing by my providers and am having to design my own plan. Tks.

I'd like to see additional advice on how to talk to doctors and other medical professionals so they actually pay attention to your concerns. It seems like way too often they just tell you what you that it is normal or act like you are being whiny or paranoid especially if you don't automatically go along with the medications and other treatments that are what they describe as "the standard of care." The other thing I'd like to see more information on is what to do if your "team" doesn't include social workers or mental health professionals to help with the emotional and mental aspects of breast cancer.

@jamie_bco_senioreditor Thanks for the links. All of this is good advice and I think most of us have tried all of it but part of the problem is it seems like you get bounced to PAs pretty quickly and, although you usually get more time and they are nice, they seem to have a sort of script that they just keep repeating, this is normal, the SE's rarely happen so don't worry, standard of care, etc. If you try and ask too many questions or balk at some of their suggestions it seems to just shut the whole conversation down, at least that is what it has been like for me.

Jamie - Yes, the cancer was II-A, triple positive. Kind of flying without a net right now since I can't take AIs or Tam. Any supportive discussions that wrap around how to manage and protect my life without the standard of care meds would be helpful. :)

Also, just my 2 cents of experience…..

July 31 - I'm so sorry for what you're experiencing. I was and still am on the same page in what it sounds like you are experiencing. Just a thought, but it might be helpful to accept that your current providers are not going to change no matter how you "rephrase" your questions or your approach. Often, it seems providers are mired in their protocols and overwhelmed by patient loads, so the set playbook takes precedence over individualized patient care. That has been my experience and it sounds like it has been yours as well. If you are able to do so, it might be helpful to move on to other providers who focus on the patient in the room and her needs. I have moved on many times now with different providers in assembling my own team. I have an appt with a new Onco in a couple of weeks. For Pete's sake! Like we really need this on top of fighting cancer and everything that entails, but our lives are on the line so we do what we need to do for as long as we can. Best to you! GB

No response from mods, so I guess I will delete my post.

Irishlove

@jamie_bco_senioreditor - Thank you so much. I'm going to see a new Oncologist tomorrow. She will be my 5th since I started this nightmare in April 2024. If my ride shows up that is. My insurance carrier's transportation service has pulled some stunts this past week, so who knows. I'm keeping the faith for now. :) If I can get there and it isn't a good fit, I'm turning to a regional cancer center that is located a couple of hours away to see if they can offer any support. I'm hoping that I can make it to the appointment tomorrow and that it will be a good fit, however. I'm worn out from all of this. Take care and thank you again. GB

@jamie_bco_senioreditor

I am so excited to read your response to GB about the podcast for those of us who can't tolerate AIs or tamoxifen. I hope it's posted before I see my new (hopefully better) oncologist in May. The old one didn't even speak to me after my last failed attempt.

Hello everyone. On Feb 22, I will now be cancer-free for three years. About 1.5 years out, I learned about secondary erythromialgia. In researching this further, it appears that more women than men are affected by this, specifically having chemotherapy-induced peripheral neuropathy. I would like to find out if others within our network have experienced this condition and how they are managing it. I fortunately caught it early. I treat it topically with castor oil patches wearing compression socks daily. I purchased on Amazon: Secondary Erythromelalgia Survival Guide. And I have started taking Alpha Lipoic Acid. Which collectively seems to be keeping from progressing. Symptmatically, it is similar to the CIPN with bursts of very cold or very hot skin that sometimes lasts for two to three hours, but topical treatments help. Please let me know if this is a topic of interest for others in our network. Thank you.

Hello Jamie. One other topic suggestion. I was introduced lymphatic drainage after learning nine lymph nodes had been removed during my lumpectomy. My knowledge is still very narrow and I would love to learn more about lymph node system and the impact of lymph removal and potential long-term care and issues. Thank you.

@jamie_bco_senioreditor I found all three once I left the post. All very informative and helpful.

Thank you.