Stage IV: How do you define curative intent?

Anonymous

Yes, I’m so interested in what this STOP HER2 trial will find. Exciting times

Dancemom

first of all, I am overwhelmed by everyone's graciousness and caring on each of these threads. I find it a little hard to absorb each story and i cant answer, but you are all amazing and I think about each one of you

Anyway...I am finally rescheduled for the masectomy that was put off last April when the sternal lesions were found. I've done 6 months of treatment... My MO last month was so positive and said the whole team at the interdisciplinary conference was unanimous in this recommendation. So I went back to the surgeon to discuss the surgery. She hesitated!!!! Then said she wanted to speak with MO again, but we would go ahead with scheduling "as if we are doing the surgery." They discussed me at conference again yesterday. Today i saw MO for my monthly bloods, checkup, and xgeva. I asked what was the hesitation? She didn't really look at me as she answered, along the lines of "she (SO) wants to make sure you know that even if she takes the breast, there is still cancer in your sternum and that can still spread. She wants to make sure you won't get mad if it spreads that you had the surgery." She actually said those words "get mad if it spreads". She then went on to say its what she would do personally...I am on board, get the bulk of it out and see what we can do about the dots with meds and rads. But it was the first time she didn't say the word "cure".

Anyway, I get it that "cure" is relative. It was just so disconcerting to have these two amazing women who are at the top of their fields and invested and caring, hesitate.

exbrnxgrl

Dancemom,

It is actually not common for stage IV de novo to have mastectomies so I suspect the surgeon is part of that school of thought. The other docs seemed to be considering some things about your particular case that would make a mastectomy medically beneficial to you.

As to “cure”, it still feels as if we’re simply throwing stuff at the wall to see what sticks. It’s so random, though we do know some situations are more favorable but that can change in the blink of an eye. I’ve been NEAD for a decade. My cure? Good luck for unknown reasons.

Dancemom

exbrxgrl thanks again ! That makes sense.

I am willing to throw it all at the wall as long as some sticks!!!!

Anonymous

I had a chat with breast surgeon last night and she up and dropped "since we are treating you with curative intent" which is the first time anyone has used that phrase with me. Not sure what prompted that but I let it slide since hey, no one knows the future and given the complexity of the human system, the cancer, the drugs, it continues to be quite the crap shoot. Part of me does worry that this will prompt new growth, and I asked her about that/potential for needle seeding and she said absolutely not. Its like I had the exact opposite of your conversation Dancemom. Regarding your surgeon discussion, I imagine they have people that don't get/accept/understand that these are relatively uncharted waters for de novo mastectomies with few, or really one gold standard, studies giving a clear steer and then get upset when the cancer progresses despite the surgery.

Instead I think I'll continue to consider it as more managing the cancer down to 'chronic intent', and be like PatMc, swinging from tree to tree in the treatment jungle.

Dancemom

yes, sondraf, I am approaching this whole thing as a chronic disease. I'm hoping it's really chronic for a long time! I believe you have big stuff coming up? Here's to a quick healing process 🥂

BarbTheBCBarbie

don’t know how to define it but my oncologist is going that route because it’s in bilateral axillary lymph nodes only as of now. So she’s treating me as 3c although I’m stage 4

exbrnxgrl

I understand that mo’s may use different terms, i.e. curative intent, chronic, etc. With respect to their approach in treating stage IV. However, regardless of what terms are used none of those are accurate in the sense that whatever the treatment is, it’s still a crap shoot as to whether it will work or not. That’s what I get hung up on. I have a bone met on my upper femur which was treated with rads and AI’s. That’s it. No aggressive tx and I’ve never had progression in ten years. Yet this same course of tx hasn’t proven to keep most folks “chronic” so we’re back to trying to see what sticks. I am grateful for my good luck but that’s all I consider it, luck.