HER2 positive stage 1 or 2 diagnosis: What questions to ask?

Posted by maureenmckean @maureenmckean, Feb 4 7:09am

My good friend who is 54 was diagnosed with HER2 positive breast cancer. They think stage 1 (size of a grape they said) although the contrast mri saw something else next to it that they took 12 biopsies of that. I am taking her to see the oncologist tomorrow and hopefully she will find out the pathology report and if she will have chemo or surgery first. What questions should we be asking?
She is an occupational therapist at a preschool. Will she be able to work at all?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Rubyslippers | @triciaot | Feb 5 3:03pm

In reply to @sirene "Which dr do you see at MDA? I go there as well." + (show)

Dr Melissa Mitchell, radiation oncologist; Dr Damodaran, medical oncologist; Dr Mark Villa, plastic surgeon, Dr Adesoye, breast surgeon; Dr Yuanteng Li, rheumatologist; Thanh Nguyen and Nakeshia Miles, both APRNs in the survivorship program.
Have you seen any of these?

sirene | @sirene | Feb 5 3:33pm

In reply to @triciaot "Dr Melissa Mitchell, radiation oncologist; Dr Damodaran, medical oncologist; Dr Mark Villa, plastic surgeon, Dr Adesoye,..." + (show)

No, I only have a medical oncologist there. I was seeing Dr. Murthy but have an upcoming appointment with Dr. Mouabbi. Have you heard anything about him?

Rubyslippers | @triciaot | Feb 5 4:38pm

Looks like Dr Mouabbi is also a medical oncologist. I always look up my physicians on the center’s website. He has taught at UTMB and Baylor - a good sign, and has multiple board certifications. You can see his area of specialty.
https://faculty.mdanderson.org/profiles/jason_mouabbi.html
My feeling is that to be at MDA they have to meet a pretty high standard so I decided to not worry about the physician they assigned me.

maureenmckean | @maureenmckean | Feb 5 6:21pm

In reply to @windyshores "I am sure this is unusual but my biopsy tissue was HER2+. After a few equivocals..." + (show)

Wow this is intriguing. The MRI biopsy pathology came back as DCIS. Stage 0 for now. They are now recommending surgery first. They did say they will know for sure what stage both cancers are after the mastectomy and pathology.

maureenmckean | @maureenmckean | Feb 5 6:28pm

In reply to @windyshores "I am sure this is unusual but my biopsy tissue was HER2+. After a few equivocals..." + (show)

So you have two kinds of cancer too?
Plan is she will have surgery to remove breast due to the size of DCIS and then have chemo - depending on stage after surgery she will have the targeted HER2+ chemo for 12 weeks or if they increase the stage a more aggressive chemo for 5 months

Chris, Volunteer Mentor | @auntieoakley | Feb 5 9:04pm

In reply to @maureenmckean "So you have two kinds of cancer too? Plan is she will have surgery to remove..." + (show)

I am a Her2+ , I am really glad to hear DCIS is the stage, really a precursor to invasive cancer. Your friend is really lucky to have a friend like you. We all need a second set of ears, and a second to ask questions that we might not think of.
I feel like a well informed decision is the only good decision and for that you need more than just a quick appointment and the minimum info.
The shock value of finding out you have cancer can predictably leave you struggling to stay focused and absorb all the information being thrown at you at once.
Do you plan to be with your friend through treatments?

maureenmckean | @maureenmckean | Feb 6 6:38am

In reply to @auntieoakley "I am a Her2+ , I am really glad to hear DCIS is the stage, really..." + (show)

We both work at a preschool providing occupational therapy so I can’t go with her or none of the kids will be serviced. But I will make sure that I can go sometimes and have others go too

kris43today | @kris43today | Feb 10 12:32pm

In reply to @maureenmckean "Thank you - I don’t know any of the details. I feel like she doesn’t ask..." + (show)

I'm sorry to hear the news of your friend. I've recently been diagnosed with IDC and one thing that has been a life saver is Mayo recaps everything discussed in our appointments in our portal notes. Maybe you can ask your friend about this. The doctors cover everything including what steps are underway at the moment.

cjs123172 | @cjs123172 | Feb 11 5:31am

Your friend will be fine. I had surgery, then 12 weeks of taxol, and finally radiation due to having a lumpectomy. Plus a year of Herceptin, which treats the HER positive. The 12 weeks of chemo can wear on you, but I worked throughout my treatment, except on the one day I went for infusions. I got used to the Herceptin and only had mild side effects. It seems like a long road, but it is a very effective treatment. The results on this are amazing, with very good responses, even 7 years later. Your friend should ask the oncologist for the studies to read since the outcome is so good.

raebaby | @raebaby | Feb 12 12:33pm

When I was 79 (I'm now 82)I developed HER2 positive breast cancer. I had a lumpectomy, chemo and 6 weeks of radiation. I had Herceptin in my IV and feel very lucky that was the type of cancer I had, as I read an oncologist say that if she ever got breast cancer that was what she would choose because of how Herceptin all but cured it.
I saw my oncologist a few weeks ago who looked at my blood work and said he didn't expect my cancer to return.
I have a story about Herceptin. As you may know ,Herceptin is made from Vinca (periwinkle) . My parents moved to our home in California in 1946. Vinca was already growing in the back yard. It survives almost anything, including not getting water in our hot summers.
When I moved to my house in the country ,our lawn died because of the drought, so I moved Herceptin piece by piece from my parent's house. I don't think a single sprout died. It now covers the lawn area. When I look outside, I'm continually reminded of how it saved my life.