lung mets after her2 misdiagnosis

tzoul

hallo everyone

On March 2017 I was dx with bc triple negative based on the IHC test (and no mets then). So I had the triple negative protocol (AC+ Taxotere+carbo).

Then, when everything were more stable I decided to visit another doctor for a second opinion. He recommended a FISH re-test (although the IHC was clearly neg). And oops, on December of 2017 (4 months after treatment) I realised that I was her2 positive (highly +). Tests on January showed no mets. I started immediately the herceptin as monotherapy (hoping that it would work alone). But no luck. Dx with lung mets on March (now they say that this was also missed on January chest x-ray so I actually did not have the chance to catch it before its appearence. Propably when her2 status was discovered, mets were already there....

So, now 8 months after initial treatment, I started 2nd chemo: Taxol+herceptin+perjeta to treat lung mets.

Has anyone faced a misdiagnosis situation?

Has anyone managed to keep lung mets under control for many years? Should I hope that targeted therapies will now do the miracle (return me to a non-mets situation)?

I am a young mom trying to live for my 3 y baby...

so sad for my bad luck

Meg101

tzoul - I haven't faced a misdiagnosis situation, but I would be extremely upset to discover after going through chemo that there was a misdiagnosis. Did something happen to steer you to a 2nd opinion? Wow, it's a good thing you sought one. I would think AC & Taxotere would have zapped the lung mets, but I'm not Triple Neg. I will keep you in my prayers that your new diagnosis and treatment removes all cancer including mets. BTW, if you've been on these boards for a while, you probably are aware that responses on a weekend are slow. I hope your post receives attention from others because it's an interesting topic (misdiagnosis) as well as one of our worst nightmares. You seem to be handling things well. You sound calm, but geeze.... a misdiagnosis, and a toddler.... I would be going crazy. Please keep posting, even if you just write "Bump" in your post. That will at least keep your post visible. Also, you might want to join the Calling All Triple Negative thread, and the "mets" threads, and the threads about those who have made it past 5, 10, to 20 years with mets. (((Hugs))) Meg

Meg101

tzoul - I haven't faced a misdiagnosis situation, but I would be extremely upset to discover after going through chemo that there was a misdiagnosis. Did something happen to steer you to a 2nd opinion? Wow, it's a good thing you sought one. I would think AC & Taxotere would have zapped the lung mets, but I'm not Triple Positive. I will keep you in my prayers that your new diagnosis and treatment removes all cancer including mets. BTW, if you've been on these boards for a while, you probably are aware that responses on weekends are slow. I hope your post receives attention from others because it's an important topic (misdiagnosis) as well as one of our worst nightmares. You seem to be handling things well. You sound calm, but geeze.... a misdiagnosis, and a toddler.... I would be going crazy. Please keep posting, even if you just write "Bump" in your post. That will at least keep your post visible. Also, you might want to join the "Triple Positive" thread, and the "mets" threads, and the threads about those who have made it past 5, 10, 20 years with mets. (((Hugs))) Meg

NotVeryBrave

I don't have the experience of a misdiagnosis - at least I hope I don't. And no mets that I'm aware of. But I wanted to let you know that I had a great response to my chemo and really believe it was those Herceptin and Perjeta targeted therapies.

I hope you get some good news soon!

Momchichi

I'm so sorry about your lung mets and hope herceptin and perjeta do the job for you. I was also triple negative at my original diagnosis and had AC + taxol over 5 long months. All throughout Taxol but especially during the last few weeks, my lymph nodes hurt and I kept reporting it to my dr who wasn't concerned. Right before lumpectomy, a scan showed double the number of lymph nodes involved. I went from 2A to 3C during treatment. After they retested my residual breast tumor and it was still triple negative, I asked them to retest the lymph nodes and that is when they found those were HER2 positive (the one node tested originally was triple negative). So while not a misdiagnosis per se, I was not treated with the correct chemo protocol for several months and share in your frustration over lost opportunities. I know the fear of it being "too late" for the H&P to help me contain my cancer but I am encouraged by reading the experiences of others here who have had a great response with the targeted therapy. There are a lot more options now with HER2 and that is what keeps me hopeful.

Meg101

Bump

KBeee

As far as keeping the lung mets under control, the gals on the stage 4 boards would better be able to answer that...because those boards are more active than this one. I am sorry you are dealing with this, but am glad that you are proactive and got multiple opinions. Hoping you do well on the Taxol. It was the easiest of the chemos I did. Not easy, but easier than others. We're all different though. Hoping the Herceptin and Perjeta, together with the Taxol, kick it to the curb for a long, long, time.

tzoul

Thank you so much for your replies and the encouragement. I will try to move this post to the mets threads (hope this is easy) hoping for finding others with similar stories.

Sometimes I feel that this has happened only to me (misdiagnosed for the Her2 status).

I forgot to mention that I had a biopsy for the lung mets (both IHC and FISH) and the score was particlularly high! I cannot understand how they 'lost' it from the start....

Hope that targeted therapies will save me now

Best wishes to all