OOOPS!!!!!!! Clerical error

laughs_a_lot

I went to the radiation oncologist today. I thought it was a bit early for the consult as I had not even started chemo. I thought ok so I am off work at present, no problem. As I was asking him questions about the effects of rads I mentioned HER2. He said you are not HER2. We looked at the e-records and sure enough there was not enough evedence to indicate HER2 receptor was any higher than normal.

I went to the surgical oncologists office which was nearby and asked about my medical records so I could see the report from Mayo. It was sent to Mayo because the initial cheaper test was inconclusive. Medical records was somewhere else but they gave me the number. I called them and explained that a week before my surgery I had gotten a call from thier office informing me by one of thier staff that I was HER2 positive and explained what I was told by the rad oncologist. They agreed to look into the issue and call me later when I got home. When I got the call the person then again confirmed that the HER2 test was negative. She agreed to send me the results from Mayo as I had not gotten a copy of it yet. I asked does this mean I have triple negative breast cancer? She said I think so. (I have one more visit with the surgical oncologist next week so I guess I will get the news straight from him.) I told her I was a bit upset but I just wanted to make sure that I got the correct information so I knew which for of cancer's A$$ I could kick. We both chuckled. I said of course I want this issue resolved before I go to the medical oncologist too as I want the right chemo drugs going into me, and the nurse agreed. I came to the conclusion that the person who called me on my cell phone the day that they told me I was HER2 positive must have gotten someone elses report mixed up with mine. What a goof up. I guess I will start learning about triple negative breast cancer. It is not worth getting too upset over, as people are human beings who are prone to mistakes. I just want it straightened out PDQ and to know the beast I am fighting against.

Lynn Smith

Clerical error
WOW not sure how I would feel.If it took 10 calls I would get to the bottom of it.I think it's scary that you get one answer from one person and another answer from someone else. GEE goes to show you that mistakes are being made everyday.And it can cost someone their life.

Like you said"You will get it straightened out". You are like me and everyone else.We need to take charge of our own health. I've started doing that.I FIRED 2 doctors in less than a year and almost a third.I did stay with a few that made some BIG mistakes but those days are over.I've learned to move on and get to the bottom of things.I had one of those doctors for 25 years.

Lynn Smith

laughs_a_lot

oops
I am not interested in there being repurcussions for the person who called me and gave me incorrect information either. I want to show mercy. I just want to know EXACTLY which form of breast cancer I am dealing with. Even if the news is that I am dealing with the fastest growing and ugliest form I want to know the facts.

cinnamonsmile

i was scheduled to see both
i was scheduled to see both a medical and radiation oncologist prior to my deciding on a double mastectomy.although it does not guarantee neither of those services will be needed, there was slim to no chance of me needing (and i didnt).i was scheduled for appts for pre-op for a mastectomy.i was told by the breast cancer care cooridnator the communcication betwee drs for their cancer care was exceptional, that there were weekly meetings to discuss all cancer patient txs.so i couldnt figure out why i still needed to see the rad onc, thought maybe incase something changed after mastectomy.saw med. onc for five minutes top,didnt discuss what type of cancer etc, the whole shebang etc.he said, well make an appt in so many weeks, you should be done with radiation by then. i was floored.when had things changed and why didnt anyone tell me?i was disgusted. the breast care coordinator came in to talk to me after that and was smiling that stupid smile when i told her and said, well, that happens.went onto rads dr with breast care coordinator (who never mention why are you seeing this dr when having mastectomy).had lengthy interview with rads nurse, saw dr and was setting me up for rad appts,when i finally said, um, do you know i am having a mastectomy. she said and i quote,"No,(then long silence)well, i guess this makes our appt very short then."she stood up, walked to the door and told me good luck with my treatment! neither dr read ANYTHING about me before the appt.i fired both drs. a few weeks later, the rads dr. had the breast care coodinator send me pink chapstick with the clinic name on it.seriously? chapstick after almost committing malpractice? rant is done.

laughs_a_lot

Got it confirmed
Well I just got a call from the surgical oncologist. He confirmed that I am Triple Negative rather than HER2 positive. Both are aggressive cancers so that washes out kind of even but Herceptin was giving a lot of promise to Her2 folks. His opinion was that it is probably better to be triple negative than HER2 positive. I am not sure I agree with that opinion. However they are already in the 3rd clinical trial for a PARP 1 inhibitor for triple negative bc. So maybe the new drug BSL-201 will be ready to add to the chemo regimen by the timeby the time I go on 4/26 for my chemo consult. Maybe I am pollyanna but I gotta try and remain positive.

joannstar

I am triple negative
and Stage 1 Grade 2 0/4...as of today, I am finished treatment!!! I had 6 rounds of chemo after 2 surgeries (to get clean margins) and 33 rads.
At this point I'll just have quarterly checks and twice yrly mammos...no follow up drugs which is both a good and bad thing. There is no further treatment available now, but I also won't have the side effects--so I guess it is how you look at it. Also, after I think 3 years our stats are pretty comparable to others (I think that is what my onc said).
When all this started, I was told I was Stage 0, but after surgery was re-staged as 1, so the chemo came as a surprise, but I did it--you can too.
Good luck in your journey, while mine takes a pause.
JoAnn