Her2+ ER PR - KI-67 70-80% lymph node involved
This has been a road my nightmares were made up of. I’m 42 and I never imagined this for myself. Needless to say I’m sure none of us imagined this. I’m terrified to say the least and all roads lead to a fight we have to fight that unfortunately we have to pray for it to never come back. That’s the thing that gets me I think .. knowing I have to fight for my life this hard and there’s no way to know if it will be back. This diagnosis feels like a curse of the thoughts. Like , if there could be another disease to loop in with this it’s the disease of the mind. I can’t stop thinking. I’m in chemo right now. Currently on 4 of 6 TCHP. I’m blessed to say the side effects have been mild or at least nothing I haven’t been able to handle. Having two more is a mixed feeling I’m dealing with bc I almost feel safe to know something is killing my IDC and then my mind shifts to well what happens when I’m no longer on treatment ? What’s going to help it not come back? My oncology plan has been TCHP for 6 rounds- 1 month later -1st surgery bilateral mastectomy/ expanders- radiation- 2nd surgery reconstruction for breast DIEP Flap.
I’m so scared for my survival. I’m scared for my plan. I hear so many different stories. I see people on herceptin for years after to help non recurrence but then I read you can only be on herceptin for a year. As far as radiation, it’s understood that when it’s invasive , you’re looking at like 30 treatments of radiation but isn’t that a lot? In Europe they do the fast 5 w a boost. Is there actually any difference between 5 or 30?
I’m just honestly so scared and new to this.
please help 🙏🏻
Comments
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@faithoverfear_1 I’m sorry you are here and what you are going through. It is scary and unfortunately, nothing can prepare you for it until you go through it. But this site is a wealth of information and support.
I was 46 when I was diagnosed Stage IV de novo HER2+++ ER/PR-. Those of us who are Stage IV will be on Herceptin and Perjeta (some only on Herceptin as well, or other targeted HER2+ medication) for the rest of our lives, although there are some brave souls who have stopped treatment after having no evidence of disease (NED) for many years. I believe the standard protocol for HER2+ patients who are Stage 1-3 is what your plan is, plus Herceptin only for a year once TC is done. Being Stage IV, I did not have radiation, so I can’t speak to that. Hopefully you get a great response from the TCHP as those who reach pathological complete response (PCR) tend to have a really promising prognosis.
One thing to be aware of is that HER2+ has a propensity for the brain I am not sharing that to scare you but to encourage you to be aware of any symptoms you may experience or to push for regular MRIs. That kind of monitoring is not standard and they typically won’t scan unless you have symptoms.
I hope others will chime in with their experience or you can find other HER2+ ER/PR- folks on the following threads. You may find some who can speak more to your specific situation than me. Best of luck to you! Hang in there. You can do it. I’ll be thinking of you!
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