F/u to change of plans

[Anitafazz]

Hello Friends Went to see that radiation doc yesterday and it was a complete waist of my time . He tole me that him doing radiation on my Mets is not necessary and pretty much said i would have to radiate you all over and it would do more harm then good . Was not impressed on how negative he was at times pretty much saying that i have cancer cells in my blood stream they don't see and i will have new bone Mets it will just be a matter of time . To come see him when i have pain or after i have surgery if they want to go that route . I felt totally defeated and angry because i feel like a problem that gets handed off to everybody and NOBODY is telling me why or what's going on . My Onc wont get get back to me and my surgeon is not texting me back either

Why is removing this lump such a big deal . I'm stressed and i doubt my future even more now with all tis . I feel like they know something i don't and just waiting for the ball to drop .

Im sorry ladies for being so negative but that's how i feel today . I'm to the point to say the hell with it and not do it at all !!!!!

[Red71]

It sounds like you need to find a new oncologist. Mine would never send me to the radiologist unless he had a treatment in mind for something specific that was going on. And someone always gets back to me. You have the right to have a second, or third opinion.

[Timtam56]

Anitafazz.You poor thing. Being palmed off like that. Where are you? In the states? I would be feeling that same if I were you. My oncologist is very very clear with me, and I think that’s what we need most, is clarity. Without it we flounder or make things up in our already too overloaded brains.

I would get a second opinion from someone recommended if I were you. Is that a possibility?

[Anitafazz in reply to Timtam56]

Yes i am in Pittsburgh and i worked at the hospital i get treated and know that my onc is the best in town . I know he is really busy but no excuse that nobody in the office got back to me and my breast surgeon has no clue what to do with me . The heck with the 2 year mark of diagnosis . In the spring she was all GO !! with surgery after tumor board meeting so what changed ? I feel like they are just waiting for me to progress . My pcp ( which i work for and unloaded on yesterday ) called them yesterday to get some answers . Hopefully they will call her back and i have my monthly appt tomorrow and im going in there angry and i will get some answers . Im so stressed that yesterday i put my car in drive backing out of spot 🤨

[Threadsgirl in reply to Anitafazz]

I agree that you need to get a new set of doctors. I am a nurse, breast cancer 15 years ago and last year had Mets lung tumor removed, currently Ned on Ibrance and Letrozole. I do not feel that I am unreasonable about my care but probably know how things should go more than people not in the medical field.I have seen good doctors and bad doctors for over 30 years. They should be taking the time to adequately explain things to you. You deserve it. It seems to me that they are just punching the buttons for some typical standard of care. This is not an easy thing to deal with and you should not have to get so stressed out. I have “fired” a doctor in the past who thought I should just go along with the plan instead of asking questions and having some say in my plan of care.

Can your primary help you to find another oncologist? I am originally from Pittsburgh, there are a lot of doctors there from what I remember. Don’t feel embarrassed or that other doctors will hold it against you to switch; it happens all the time. Once you have lost trust and are angry at your “team” it will be a continuous problem, as they will probably not change. I wish you all the best.

[Ardie1970]

I am going for my 2nd opinion this week. I like my doctors just fine but I think they are out of their league when dealing with me. I was diagnosed stage 4 de novo and it is like they Google how do we treat this and regurgitate that info to me. When I pushed to be treated oligometastatic they decided I had bone Mets which they didn’t biopsy and my last ct said my bones look normal. I have an open wound on my breast and they do nothing about that. I am right there with you!

[Hidden]

Personally I would go to another doctor and/or onc and care team. You can demand what you want done. They are no n charge of our lives and bodies. We are. Keep trying. There are many doctors out there.

[BluHydrangea]

I hope you get the answers you need when you go to your next appointment. Do you have many bone Mets? Are you considered oligometastastic? I am— and my team went through much debate about what to do with me. I ended up with mastectomy on left side where primary tumor was. After they did all the MRI tests to find out where exactly bone Mets were the radiation Onc said they were healing and she could not accurately shoot the beam anyplace so she recommended not doing radiation now.

I’m sending you a hug and lots of hope for your next appointment. ❤️

[love2golfwell]

I'm so sorry that you are getting such a run around from your doctors. I agree with Red71 that my oncologist would not have me see the radiation oncologist unless she thought I should be treated with radiation for bone lesions. Someone always gets back to me when I have questions. I would definitely be thinking about changing doctors and getting the care and treatment that you deserve. I hope you can find a doctor that will answer your questions. Sending you some prayers and hugs.

[mariootsi]

I would suggest getting a second opinion. You should not be treated like that. This damn cancer is bad enough without being stressed over your care or lack of it and the negativity you are encountering. It is so amazing to me how strongly we have to advocate for ourselves at a time when we should trust our doctors to treat us with respect and positivity.

[RLN-overcomer]

Sister/warrior I am so sorry to hear you are not being cared for by the very so called medical"professionals " that take an oath to cause no harm . I know they are facing the challenges of Covid-19, but they still need to care, or at least act like they do. I pray You will find everything you need, even if you have to change Dr.s.🙏😇🙏

[Anitafazz]

Hello Ladies

I had my Appt yesterday and my onc came in sat down with and explained what his thoughts are . He was not at the Tumor board meeting because he was out of town and when I messaged him he had no clue what i was talking about do there being no notes in my chart about the phone call I received or of tumor board discussion . Well he said if he was there he would of never agreed to radiation to bone Mets at this time .

He put me on STD from work and I'm going to get it together and relax . He advised me to relax stay positive and at this point surgery is a elective procedure which will change in near future with lots of studies coming out that it is beneficial to us . We will revisit surgery in Jan and he will have along discussion with the breast surgeon .

Concentrating on my scans coming up in Nov for now and then we will see

Thank you for all your advise and i take every single one to heart .

Today will be my last day at work with mixed feeling about it but i know its best for me to take a load of and recharge my batterie because the red light has been on for at least 20 days lol.

Anita