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How do I avoid bad appointments like this???
Yet another new dr appt yesterday , pulmonologist, 2 hrs. Asked oncol for referral , bec having repeated thoracentesis ( lung drain ) due to MBC in lymph nodes in lungs. I am concerned as to why so much liquid being produced,when it might lessen ( taking Ibrance /Faslodex) and also potential damage overall .She insisted my oncolo had the idea to send me ( not true ) and had no positive treatment to offer . Suggested putting me back on inhaled steroids AFTER I told her it didn't help, made my hands shake, gave me a cough . She also reviewed old CT scan from Jan , and revealed way MORE comments on how much cancer there was , all new to me , then was surprised when I didn't know any of that and was unhappy . Oncol did NOT tell me , or my son, who she also knows very well after 5 yrs of breast cancer appts. (He works in transplant dept at a diff hospital ) Pulm. acted like she didn't believe me, even used "lies" ij quotes on her post appt notes !
Also pushing surgery which is not needed if the chemo treatments work as explained when begun. HOW DO I AVOID BAD APPTS LIKE THIS ?? She had no answers /experience relevant to my cancer questions . Sign me FRUSTRATED !!!
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@pjsfla I can tell that you’re very upset and that’s understandable. And I’m glad you feel ok to have a rant here—it sure helps to get the frustrations out! I would suggest that you carefully list you questions about your cancer in your lungs, and ask the lung cancer group. https://connect.mayoclinic.org/group/lung-cancer/ The mentor, @merpreb is very knowledgeable.
Can i ask if you have anyone go to doctor appointments with you? They can be so essential to a good meeting. They can write down everything the doctor says so you can review it later. My husband did this for me when i got my autoimmune disease.
When do you have your next appointment?
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3 ReactionsHi Becky ! TY for your understanding . It's been a long fight and I'm feeling worn down . It MBC , so not technically lung cancer , and said to be in my lymph nodes in the R lung. No one helps me, except with rides, so at least that part is good. I had to move from sunny South Fla , leaving behind my fam , my friends and my business I built up for 20+ yrs , to battle cancer here in Portland, OR . Then covid hit , right when I went bk to clean out & sell my home. Anyway , seeing a NEW oncol next Tues. Best Regards to you , PJ
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3 Reactions@pjsfla I do understand that it is MBC in your lung and not primary lung cancer. But the side effects can be the same, which is why i suggested the Lung Cancer group.
I certainly hope your new oncologist can be of help!
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3 ReactionsTY for your good wishes . Its so hard to just sit and wait and wait . I had a look at the Lung C group but no one there takes the drugs I have to , and the surgeries seem very different - I had masectomy - I appreciate your helpful suggestion .
Becky, I am so very sorry for your experiences. I hope your next appt. with new oncologist works out. I too would suggest writing down your questions and if possible take another person for a “second set of ears”. I know you have difficulty with other doctors, explain that briefly, then let the new doctor give you his time( try not to spend too much time discussing bad experiences!). Sending positive thoughts your way for a great appt. with new oncologist.
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1 ReactionThere is no reason to explain anything about the uncaring/useless doctor . Nothing will be gained. Because I have high expectations , to actually be listened too , and actually get the care or explanation I deserve and am paying for , doesn't mean I can't remember my questions . TY for your positive wishes . Good Luck to all of us , dealing with today's health care system .