Treatment after lobectomy for L775P mutation in the ERBB2 (HER2)

hi @donnademps - welcome to mayo connect! there are many members here who have had lobectomies and additional treatment. have you learned what medication they are proposing you take? how soon will you be meeting with your medical oncologist?

@mamajite Thanks so much for your welcome. I will see an Oncologist on Fri May 1st/26. That is when I will find out what he will discuss with me what type of treatment he is recommending. I'm trying to find someone who has had a lobectomy and has had adjunctive treatment. This could give me a bit of information before I see the Oncologist. I'm concerned about the if/how any treatment affects my osteo arthritis. My younger sister had colectoral cancer and after her chemo, her osteo in her back (which was already in bad shape) worsened and now she can only walk with a walker. I feel the thoracic surgeon who initially did my surgery, sugar-coated the entire surgery process. He only told me on the follow-up check-up that the numbness under my breast is permanent.

@donnademps I'm sorry you have permanent numbness from your surgery. I have also experienced doctors downplaying the negative side effects of surgery/medication. I know they don't want to discourage patients from moving forward, but honesty about what you're signing up for is important. I would definitely ask about your concern re: medication worsening your arthritis in your appointment on Friday. Sometimes they can choose the option least likely to cause specific secondary effects. I have EGFR mutated NSCLC, so I'm not familiar with the medications for HER2 mutations, but hopefully some other folks might be.

@mamajite Thanks so much....I will be asking for details to be sure.

Hi Donna @donnademps, Its often difficult to make decisions on what the next steps should be. When do you meet with your doctor? We'll be interested to hear what they recommend.

@mil63, How is your husband doing? Wasn't his lung cancer HER2/ERBB2 type?
https://connect.mayoclinic.org/discussion/her2-non-small-cell-adenocarcinoma-stage-4-lines-of-treatment/

I meet with an Oncologist for the first time tomorrow (May 1st/25). I had a rt. lower lobectomy (RAT ) on Feb. 17/26. Instead of the 3 wks clinical check-up with the thoracic surgeon, I had to wait for 9 wks. It was then I found out I had to have adjunctive treatment. I felt the lobectomy was very "sugar coated". 8 hrs after the RAT, I was rushed to the O.R. due to internal bleeding from the 1st surgery. When you hear "critical" and "get me some O negative blood", I felt the fear of dying. The surgeon who fixed the bleeding told me it was a "real messy situation". In any case, life goes on, mistakes are made. I don't have a choice of Oncologists as there is only 1 in my area that does "adjunctive treatment". I will get a second opinion if I feel it's required. I will also ask here about the recommended treatment. No more sugar coating! Thanks so much for asking.

@lls8000 thank God the first line of treatment and maintenance have worked and his last scan was clear! It’s no fun to continue maintenance for a completion of 2 years post diagnosis every 3 weeks, but it has proven worthwhile. We hope that if he continues well we can maybe extend to 4 weeks . It all depends on his response. New questions are arising such as the possibility of a lobectomy even though he is stage 4. We are hearing more about this.

We are thinking this summer going for second opinion - consult at Mayo again ( at one year mark)

@donnademps I'm so sorry your surgeries were complicated and frightening. I had a similar experience with my 2nd c-section and it was traumatic. I hope your appointment tomorrow goes well. may I ask where in Canada you are? I live in Seattle and we visit frequently. 🍁

I live in a small rural in sourthern Ontario, about 40 mins from Hamilton. Hamilton has an excellent hospital that focusses on cancer, with research. It's also a teaching hospital. Jurvenski is the name, but the surgeries are done in St. Joe's. It was weird bc my dad went to Jurvenski for his treatments in the early 70's. It has expanded tremendously since then.

@donnademps my husband has a cousin in Hamilton. ☺️ I hope your appointment went well today.