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

Posted by donnademps @donnademps, 1 day ago

A 71 yrs young Canadian here (I only mention this bc some treatments have not been approved here) who had a lower rt. lobectomy on Feb 17/26. The mass removed was 3.3 cm's. PET scan prior to surgery showed no metastasis. CT scan post surgery shows all cancer removed. However, I have been referred to an oncologist for adjunctive treatment. I understand this mutation is aggressive. Has anyone had any treatment after a lobectomy? What kind did you have? What can I expect?

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mamajite | @mamajite | 1 day ago

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?

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donnademps | @donnademps | 1 day ago
In reply to @mamajite "hi @donnademps - welcome to mayo connect! there are many members here who have had lobectomies..." + (show)
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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?

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@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.

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mamajite | @mamajite | 1 day ago
In reply to @donnademps "@mamajite Thanks so much for your welcome. I will see an Oncologist on Fri May 1st/26...." + (show)
Profile picture for donnademps @donnademps

@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.

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@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.

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donnademps | @donnademps | 21 hours ago
In reply to @mamajite "@donnademps I'm sorry you have permanent numbness from your surgery. I have also experienced doctors downplaying..." + (show)
Profile picture for mamajite @mamajite

@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.

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

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