Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyBCTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyBCTeam Member asked a question đź’­
Lansdowne, PA

Many women have reported they have learned more from women here about things related to Breast cancer than what their doctors have told them and also women who have complained about side effects are often told their side effects must be because of 'something' else
What have you learned here that you didn't learn from your doctor and what side effects of your treatments were dismissed and told something else must be causing them
And if anyone has a theory why doctors don't disclose… read more

November 23, 2024
 · 
Reactions

Answer Summary

Members overwhelmingly shared that doctors routinely minimize or outright deny treatment side effects, with radiation-related shoulder pain,... Read more

Members overwhelmingly shared that doctors routinely minimize or outright deny treatment side effects, with radiation-related shoulder pain, lymphedema, neuropathy, and AI-induced joint pain frequently dismissed as unrelated or caused by something else despite these being well-documented complications. Several members described learning critical information from the community that their oncologists never disclosed, including the permanence of lymphedema, the severity of hormone blocker pain, risks of tooth loss from radiation, and drug interactions with tamoxifen, leading many to seek care from primary doctors or specialists who were more willing to acknowledge and treat their symptoms. A recurring theme was the erosion of trust in oncologists paired with deep gratitude for this community, with members theorizing that doctors withhold information to ensure treatment compliance, avoid liability, or simply lack training in empathy, while the shared wisdom here has become their most trusted source for navigating the realities of living with and beyond breast cancer.

A MyBCTeam Member

The 2 biggest lies, not just telling me what could happen but outwardly lying about them. I mentioned both of these several times here. I was on this site weeks, maybe 2 months before my surgery and the first two things I learned here was Lymphedema was terrible, nothing really helped it and it doesn't go away and how painful the hormone blockers were. So, I meet with my surgeon, she mentions lymphedema and then goes on 'If it happens, we will fit you with a sleeve and that will help it'. Then I met with my oncologist for the first time, and she prescribed anastrozole. It took me 2 months to take it. With her and my nurse navigator trying to convince once I take it for a while, the side effects go away. These 2 professionals lied to me. Unacceptable. So I never put 100% trust in anything they say. I trust the women here first.

November 23, 2024
A MyBCTeam Member

For one, the primary care physician usually provided most of the care . Now, its a specialist for everything. When my PC doctor prescribed thyroid medication back in 2012 he didn't send me to an endocrinologist. He prescribed the medication. It really is a mess nowadays. I hate going to a regular doctor now only to be given a bunch of referrals to see one specialist after another but then it might be answer to treat possible side effects of cancer treatments. Confusing situation.

November 29, 2024
A MyBCTeam Member

@A MyBCTeam Member Now I understand better why they are watching you. Sometimes these drugs cause heart, lung, kidney problems but if you already have a problem before Breast cancer happened, I can see why they would want to be cautious. But what can do to stop recurrence? Would a heart monitor be helpful at all in your situation? This is really complicated, I don't have the answer but please keep us updated, what you are going through might be very helpful to other women especially as we get older and develop different health problems. 🥰

November 25, 2024
A MyBCTeam Member

I have been blessed. I have had my oncologist since my very first diagnosis in 2019 and he has always been upfront with everything. He told me from the start he doesn't like to sugar coat anything

November 25, 2024
A MyBCTeam Member

@A MyBCTeam Member I have realized that my oncologist just wants blood work and a check in to see how I’m feeling. But when I actually tell her how I’m feeling she won’t say it’s the medication.
I can talk to my primary care doctor. He’s the one who prescribed my gabapentin, cholesterol meds and my referral to a hand specialist. My psychiatrist prescribed my lorazepam. So I don’t rely on my oncologist for anything other than bloodwork and Anastrozole.

November 29, 2024

Related Questions

View All
A MyBCTeam Member asked a question đź’­
Wilmington, DE