Went to the oncologist yesterday and I said to him, what happens if all the tumors are gone and no cancer is found do I just like come in every 3 months for a check up or what. He looked at me like I was crazy. He said you have to stay on your Ibrance for rest of your life. I could not believe it. He said you are a stage 4..
I want to know what you guys think of this.
I agree - same as I was told ... MBC will require Ibrance for rest of your life. Advances and new drugs are being approved all the time, so there’s always hope for a better, more effective plan. I’m so sorry for your appt experience, it seems he would have better explained the disease.
The first time I went as he was leaving the room he turned and said it will take a couple of years and that this is not a death warrant.
As Sandra and Terilyn said, this is for life. Your doctor was tight but his bedside manner leaves much to be desired. Can you ask if there is a support person in your clinic that can take some time to go through your diagnosis and treatment with you? How long since you were diagnosed? Elaine
Hi there
It seems to me that Your situation was not explained properly at your initial diagnosis
It must have been a shock to learn that you are stage 4 if you thought there was a chance of coming off medication and just having check ups...maybe you have been in some sort of denial
I hope you manage to settle in your mind and accept the diagnosis and treatment plan
Barb xx
Yep, I agree with everyone here. My understanding is that you take these drugs forever. MBC is not curable, only manageable. I wouldn't take the chance of discontinuing these medications.
That's a typical left brain emotional detached response from yes a male oncologist and you'd get the same response from a radiologist. That's how they are wired, therefore they are clueless as to what the appropriate "patient centered" response looks like, therefore they have no motivation to receive the training for that needed skill set that they grossly do not posses.
That's why I changed my oncologist from a male to a female who is a breast cancer specialist.
It's like night and day. I love her and hug her after my monthly appointment.
She actually touches me and examines my breast, monitors my inflammation and any symptoms I share that I may have and she will answer any question I have without judgment, and will provide clarity for any concern I have. Lastly, she is constantly compassionate and kind.
On the positive side when there are no longer cancer lesions noted in the scans and your CBC and tumor marker looks stable, you may be able to not have your scans so often. That would me less of the radioactive ink in your system, so that's a good thing. Your creatine level would stabilize, which will be less stress on the liver.
And yeah, bottomline if you went off the Ibrance and Letrozole for any reason, you would start producing estrogen again and that is what feeds the cancer, period.
And yes, MBC is stage 4... the breast cancer metastasized/spread to other parts of the body and is no longer just in your breast no matter how teeny tiny the tumor was or now is.
On the major plus side... you are receiving the gift of life supported by the MBC medication you are taking as well as the care your receiving from your oncologist. You can continue to receive that gift for as long as you so desire and as long as you work on living a healthy life which does entail keeping stress at a minimum and surrounding yourself with positive attitudes.
Receiving the gift of life supported by the MBC medication is a blessing, that women in the past did not have the opportunity to receive.
Gratitude is a powerful and courageous attribute to develop while embracing your limitations form MBC, rather then hating, fighting and grieving loss.
It works miracles for me to flip the script and love MBC because it's now a part of me.
I'm presently loving my cancer bone mets away and for today's scans, half of my bone mets are no longer visible in the scans and no new mets are present after 15 months on Ibrance and Letrozole and Xgeva shots.
Rome wasn't built in a day, I look forward to all my bone mets to no longer be visible in addition to my increase in physical strength to continue.
I love that part because some of the MBC limitations are leaving as well.
Hope that helps.
I assume you understood you were stage 4 but did not appreciate his response manner- understandable!! It was dismissive and “I am in control not you”. That is my reaction
Hi Artist!
I think the question u ask is one we all think about...if NED does treatment change?...it’s a natural and reasonable question...I think a more intelligent/empathetic response from a doctor would be to state that we need to continue with a maintenance dose but we can lower dose...move scans from 3 to 5/6 months etc...as long as treatment is working...anything encouraging! 😀❤️💕
'a' stage 4! We are people with lives to live not stages. I wish there was a way we could educate doctors on how it feels to be on our side of the table and the impact of words not chosen with care and unkind looks.
There are some very good oncologists but some who have no emotional intelligence and aren't aware of it. It's not something that they are examined in, but it is something that can be learnt.
I agree! Sometimes I don’t think he’s listening to me at all.
That’s what I’ve been told. But my last two scans showed no evidence of disease, so I’m taking a break from Ibrance. I continue to get Faslodex injections every 4 weeks. Since there is no cure, I’ll always be on something.
