Can't quite trust the good news ... is it just me?

Anonymous

Can't quite trust the good news ... is it just me?

PurpleCat

My initial core biopsy said DCIS. 98% survival rate, same as the general population. Never requires chemo, maybe 3 weeks of radiation, tamoxifen, but you can also participate in a "watchful waiting" study where they don't do any treatment because they would like to figure out which forms of DCIS turn into cancer and which ones don't. Nobody dies of pure DCIS, ever. So for the first month, I was living with this relatively non-scary diagnosis, just waiting for surgery and thinking about whether I'd rather get the treatments or take my chances with the watchful waiting.

After the surgery, a nasty shock: we found invasion after all. Now we need a second surgery to get a lymph node to see if it's spread. If it has, you will need chemo after all. Or, if the oncotype score is high, you will need chemo anyway. Definitely radiation, 6 weeks. Don't worry; if things look good the survival rate is still great ... but no longer 98% like the general population. People die of this.

More surgery, more waiting. Then good news by phone: nodes were clear, oncotype is 12, so no chemo! Hooray! I happily informed my community of supporters and pray-ers, which had grown to quite a size during the six-week roller coaster ride.

Now I'm waiting for the follow up to the node surgery in a few days. And even with that happy phone call, I am still afraid of being blindsided by bad news. What if I get in there and it turned out they were looking at the wrong person's reports when they called? How do I know the testing was accurate this time, when the initial core biopsy missed the cancer (although, thankfully, at least caught DCIS so I had surgery/removal anyway.) And did that phone call really happen? I didn't just imagine it, did I, and I'm going to go to my appointment and find out the nodes and the oncotype score were both bad and they're holding on to them to tell me in person?

Runrcrb

I created a special ring tone (Pat Benitar Hit Me with your best shot) because every time my breast surgeon called it was more bad news. Finally got to the point of stability and no more bad news. You will get through this. You will get to the place where you believe the results. I

CaliKelly

Or that song by I don't know who, some British group - I GET KNOCKED DOWN, BUT I GET UP AGAIN! I'm through with active treatment, after 2 and a half years of it, and I don't know why, but feel less secure than when I was having treatments. Happy to be done, but I feel like, I'm not doing anything to attack whatever might still be lurking( except hormonal). I'm sure I'll get over that feeling as I become used to more normal life. I'm one of those annoyingly positive people, so not like me to keep expecting bad news😄

PurpleCat

Ha - Runcrcb, I love the idea of setting a separate ringtone! Truth is, just the sound of the phone lately is putting me on edge. Maybe that would help.

Cali, I think I understand what you mean. As unhappy as I am to be facing this process, I have never been more certain than I am right now that I do not at this moment have breast cancer, as the only thing that showed on MRI one month ago has been removed and the nodes were clear. If anything else was brewing, the upcoming radiation will keep it down. Once that's over, who knows?

WC3

I know how you feel. I am somewhere between stage 2 and stage 4...they are back to thinking stage 2 but I am a having a hard time not being skeptical.

kksmom3

Purple Cat, I basically had the same thing happen, except my DCIS was grade 3, so the surgeon did the sentinel node at the same time. Like you, they found some IDC, my node was negative, thank God. It is so hard, isn't it? I finished radiation 6 weeks ago, recovered well from it. I want to move on, but seem stuck. How are you by now??

AliceBastable

The biopsy is done on such a small sample, it's not unusual at all for the diagnoses to change after surgery, when there's more for the pathologist to look at.

TB90

What???

PurpleCat

Thanks, kksmom3. I'm doing pretty well; finished radiation on the last day of December and am just easing into Tamoxifen. I'm also setting up an appointment with a counselor at the cancer center to help me process all this. I held it together pretty well during the actual treatment phase, and now that it's over I don't quite know what to do or how to feel.