Bad news days before chemo ends.

EmbracingToday

Hi,

I've read a lot on here but only posted few times. I need your support and help. My onc called me yesterday with bad news. Here are my details. I did the 12 weeks of taxol, and finish my 4th round of AC this week. Radiation was planned to start about 3 weeks after this. I had a bilat mast with recon in Dec 2017.

She called me yesterday and went on to explain that she was looking through my chart and pathology reports. She found a path report from late December that she says she never saw or received. {I'm ER+PR+Her2-} And, this is what I've been treated for the past 5 months. She said one of the path reports says that my tumor is actually Her2+. So, this means that I should have been receiving Hercepin along with the 12 weeks of taxol. My surgeon and my oncologist missed this particular path report. This path report was never reviewed for the past 5-6 months!! No one did anything about it!!

I'm going in first thing Monday morning to discuss with her. I'm shocked & devastated!

I'm just like WHAT? How did/can this happen? I know there's human error. But, this is my life! The studies indicate that I would have benefited from receiving Herceptin earlier, my percentage at survival would've been better!! I have 3 kids. I need every percentage in my favor, and this was taken from me. And, now I can't go back. I have so many feelings right now. I don't know what to do or think.

I'm asking for help and guidance with this situation. I don't understand what this means for me. How do I go forward? I'm so thankful that she came forward and didn't just sweep it under the rug. But, I'm devastated at this news. Do I continue with my team of caregivers? I still have so much care left. What are my rights?

Tuesday, May 15th is my last chemo. And, also my birthday. My family has a huge party planned for me that evening for my end of chemo. Such a blow, I'm just in shock that this just happened.

Please help me with any thoughts or advice.

Thank you so much.

vampeyes

Hi Embracing Today,

{HUGS} I am so very sorry that this has happened. Is it possible that with the chemo you did receive, the mastectomy, the rads to come and hormonal therapy will be enough to take care of the cancer you had and the hormone therapy to help prevent it from coming back? I send positive thoughts that you will be alright, you will get through this and that will be the end of it.

Try to have a happy mothers day. XXX

Meow13

You shouldn't despair start the herceptin and move forward. Being her2+ might actually be good, meaning there are more ways to treat it. There is also a vaccine I think it may still be experimental for her2+.

vlnrph

Hopefully you got some answers and an updated treatment plan by now. I agree with Meow, you can look ahead and perhaps even be thankful that additional therapy is available. Certainly, enjoy that big birthday party tomorrow!

Some facilities have pathology reports go through a ‘2nd set of eyes’ especially when the results are debatable. Maybe that is what happened with you (in addition to possible short staffing over the holidays, etc.) Whatever the reason or excuse, this situation should be addressed by the institutional quality assurance committee.

You seem fairly young - did you have genetic counseling?

exercise_guru

Ok that truly truly sucks and I don't blame you for crying some big tears heading to the finish line and then getting kicked like that.

I think if I were in your position I would push hard to get perjeta and herceptin if possible for the next year. The herceptin was tiring but not undoable and my hair grew back during it. The perjeta can cause diarrhea but most find it doable. I wasn't offeres that choice. I will give you some good news in that AC is a good treatment for her2 it's the more aggressive choice so don't freak out too much. I think you should make sure your oncologist takes this to the tumor board to make sure the next steps and if you need anything with that herceptin and given the node status they should follow up with a CT at some point if you can get it.

I was on tamoxifen and herceptin for almost a year after chemo.