HER2 positive and Metastases to Brain

KCMC

Hi, I'll try to keep this short, I am Triple Positive, had double mastectomy, DIEP Flap and six TCHP's. I have four Herceptin and Perjeta infusions left. I was multi focal with the largest tumor being 4 cm. No node involvement, Stage 2A. A week ago today I thought I was having a heart attack, pain and numbness in my left arm up my neck and jaw. I went straight to the emergency room they did EKG, Doppler, X rays and Cat Scan. I was released after 9 hours and was told nothing was wrong. Fast forward 5 days to infusion day and the Oncologist told me that the ER contacted him and after further investigation I have a meningioma tumor. They said they were almost 100 percent sure it is benign. I was too much in shock to really ask any questions. They are suppose to send me for an MRI and an Echo Cardiogram. I am currently waiting for my insurance's approval. I started doing some research online and noticed that HER2 positive breast cancers usually metastasizes to the brain if it going to spread. I stopped researching right there. What are the chances I did not catch this on time. I am worried that maybe the cancer was out of the gate before diagnosis.

I did not have an MRI or a PET Scan before this. Should I be worried? Ugh! I hate this.

wallycat

I am so sorry you are here, posting this. I don't have a reply but wanted to let you know someone read this and is thinking about you.

I would think if they perceive it to be a b-9 meningioma, then that is what it is. Sure, there's always a chance, but I think that is why a lot of docs are opting out of routine screenings (not that yours was routine) since they show anomalies that many of us have and simply don't know.

Best to you and keep us posted.

KCMC

Thank you wallycat, I really appreciate it and I will let everyone know how it works out. The oncologist said it has to come out regardless if its benign or malignant since it is affecting me. One day at a time - I keep telling myself. I like your kitty, I have three that keep me good company.

Shellsatthebeach

Hi KCMC,

Since you had no lymph node involvement, the odds are in your favor. This is probably not related to your BC and let's hope B9. I wish you the best.

Meow13

Stay calm, hopefully they will remove it that will be that. So sorry this has to be very scary. Good luck to you.

KCMC

Thank you, Shells and Meow, I do need to stay calm. I have only told hubby so far, hoping insurance company approves the tests quickly. Shells I keep thinking and repeating to myself what you said, it is probably not related to my BC. The waiting is the worst.

SillyMe0114

Hi KCMC,

I read often, but haven't posted much. I usually read from my small tablet.

I spotted your question because I am a triple positive my second go-round, and I went through a frightening experience with a large tumor found at the base of my brain. Unlike you, I didn't realize that brain mets are common with HER-2.

When I was diagnosed with breast cancer the second time, my breast surgeon had me get a PET/CT scan immediately. A large tumor was picked up by the scan. I was able to have this tumor removed after I had 6 rounds of TCHP and my mastectomy. It turned out to be a neurofibroma, in other words, benign. In hindsight, I was having lots of issues that I attributed to my ever-increasing clumsiness. I was able to have DaVinci surgery performed by an amazing surgeon, who went into the area through my throat, and no one but myself and my dental team can tell.

I highly recommend that anyone diagnosed with a cancer get a PET/CT scan as soon as possible, before treatment begins. In my case, even though the tumor was benign, it was causing some serious problems already. If not for the PET/CT scan as a result of my breast cancer diagnosis, I never would have found it until it caused me more serious harm. My onco-neurosurgeon for head and neck cancers let me know that even benign tumors cause harm. Now that we know, this is another type of tumor that my medical/dental/oncology team look out for.

Yes, you can have a giant neuro-related tumor that is benign, and the sooner you find it the sooner it can be dealt with to prevent further problems. My personal experience was initial fear and dismay that my body was producing tumors of various sorts, but that ended up being the most high-tech and best part of my cancer experience round 2. Once it was removed, it was such a relief.

I hope all goes well. Hang in there.

Hugs,

Lily

KCMC

Hi Silly Me, thank you for posting, I really appreciate you replying to me. I know I should have had a Pet Scan/CT Scan when I was diagnosed, my bad! The emergency room doctor was surprised I never had one. My oncologist said he was going to do one after all treatment ends. I was informed since I have issues it will definitely have to be removed. Thank god it worked out for you and you haven't experienced any problems since. Your situation brings me hope and thank you for sharing your story.

I live in Rockland County New York and I am very close to New Jersey, right on the border of Bergen County. Would you mind sharing the name of your doctor with me. If you don't feel comfortable doing so maybe you could Private

SillyMe0114

Hi KCMC,

My breast surgeon immediately ordered a PET/CT scan for me, and others in her office did all of the pre-approval work with my insurance. Her group has a team that take her orders and run with them. I got lots of phone calls, and essentially all I had to do was show up. My first time, I didn't get a PET scan automatically either. I had chemotherapy before surgery, and the PET/CT scan was part of staging. I got very lucky with staging, not a IV.

I am in Central NJ (Mercer County), and the good fortune of that is relatively easy access to both New York and Philadelphia. My surgeon for my neuro tumor is part of Penn Medicine in Philadelphia, Dr. Jason Newman. https://www.pennmedicine.org/providers/profile/jas...

Dr. Newman and his team were wonderful. They had a solid plan for all possibilities, the first being to cause no harm. He answered all of my questions without my having to ask. (He also teaches.) They also had all sorts of specialists from the Abrahmson Cancer Center, also part of Penn Medicine, come to me during my pre-op visit, giving all sorts of helpful information so that I was prepared for all possibilities as well. I left my pre-op feeling like I was in the best hands possible. And I was.

I hope this helps. Please let us know how all of this works out for you, or just me if you prefer for privacy reasons.

I wish you all the best!

Lily

pupmom

I wasn't HER2 positive, but because of my positive nodes I got scans. All of them showed "anomalies," but they amounted to nothing. Still, I was terrified until my MO reached that conclusion. Seems this is the same for you, but because you have symptoms, you will need further treatment. All part of the process we have to go through dealing with this disease. Hugs!