Diagnosed with breast cancer & primary lung cancer: Next steps?

I wanted to update my previous post but I’m not sure I’m doing it correctly. Anyway I don’t know if I mentioned originally that I was diagnosed in Dec with breast cancer. It was during pre op for that that they discovered the lung cancer. I am losing my mind at this point. I just had my 15th breast radiation treatment but there is no plan for my lung. I met with surgeon this week. He said the path report I had copy of was wrong. It said cancer is in my left upper lobe but it’s actually in my left lower lobe. He said he could remove the entire tumor by removing the lower lobe. It has grown since CT scan one month earlier and is stage 2. I told him the medical oncologist said I need chemo before surgery and wrote order for chest port, and to have root canal tooth extracted. The surgeon said that I should get it removed first, then chemo. I felt relieved. He wrote referrals for pre op screening and tentatively scheduled surgery for 2 weeks after last breast radiation. He also said don’t do chest port or have tooth pulled. Nothing to delay surgery. 2 hours later the medical oncologist called and said he had great news. A test came back saying I have the EFGR mutation so there is a new targeted chemo pill I can take along with regular chemo BEFORE any surgery. I asked if it wasn’t best to have it removed while it’s contained to one lobe and operable and afterwards do any necessary chemo? He said chemo before surgery has 76% 5 yr survival. Chemo after has 66% 5 yr survival. He ordered the new pill. The pharmacy called & said there is a $2100 co-pay and should they order. I said give me a couple days because I have no actual treatment plan yet. When I went in for radiation today they told me the Doctors don’t agree on a plan yet. I’m feeling very stressed. My lung cancer was diagnosed 1st of Jan. It’s growing. They sent a phlebotomist to my home today for a blood draw for another genetic test that they didn’t even tell me about. I keep saying I want a 2nd opinion from UC Davis but no one is referring me or sending records. I don’t know what to do. I have 8 more days of breast radiation.

I wanted to update my previous post but I’m not sure I’m doing it correctly. Anyway I don’t know if I mentioned originally that I was diagnosed in Dec with breast cancer. It was during pre op for that that they discovered the lung cancer. I am losing my mind at this point. I just had my 15th breast radiation treatment but there is no plan for my lung. I met with surgeon this week. He said the path report I had copy of was wrong. It said cancer is in my left upper lobe but it’s actually in my left lower lobe. He said he could remove the entire tumor by removing the lower lobe. It has grown since CT scan one month earlier and is stage 2. I told him the medical oncologist said I need chemo before surgery and wrote order for chest port, and to have root canal tooth extracted. The surgeon said that I should get it removed first, then chemo. I felt relieved. He wrote referrals for pre op screening and tentatively scheduled surgery for 2 weeks after last breast radiation. He also said don’t do chest port or have tooth pulled. Nothing to delay surgery. 2 hours later the medical oncologist called and said he had great news. A test came back saying I have the EFGR mutation so there is a new targeted chemo pill I can take along with regular chemo BEFORE any surgery. I asked if it wasn’t best to have it removed while it’s contained to one lobe and operable and afterwards do any necessary chemo? He said chemo before surgery has 76% 5 yr survival. Chemo after has 66% 5 yr survival. He ordered the new pill. The pharmacy called & said there is a $2100 co-pay and should they order. I said give me a couple days because I have no actual treatment plan yet. When I went in for radiation today they told me the Doctors don’t agree on a plan yet. I’m feeling very stressed. My lung cancer was diagnosed 1st of Jan. It’s growing. They sent a phlebotomist to my home today for a blood draw for another genetic test that they didn’t even tell me about. I keep saying I want a 2nd opinion from UC Davis but no one is referring me or sending records. I don’t know what to do. I have 8 more days of breast radiation.

@bdurel I'm so sorry you're having to manage 2 cancer diagnoses at the same time. I have EGFR mutated lung cancer and wanted to see if I could help. I would absolutely get a second opinion asap, especially since the doctors you're seeing don't agree on a treatment plan. UC Davis seems like a great choice since it's closer to you than SF. You can call them yourself and start the appointment process. They will help get copies of your records.

Phone: 916-734-5959 or 800-770-9261
Hours: Monday – Friday 8:30 a.m.-4:30 p.m
https://health.ucdavis.edu/cancer/adult-cancer-care/appointments
The pill they mentioned is probably Tagrisso (osimertinib). I take that and the retail price is crazy expensive. There are programs to help cover the cost. That's something else the cancer center should be able to help you with setting up.
https://www.tagrisso.com/home/financial-help.html

@mamajite Thank you so much. That is so helpful. I believe the biggest disagreement is whether I have surgery first or the targeted drug and chemo for 9 weeks prior. Did you have surgery? Are you doing chemo alongside the targeted drug? How have you tolerated side effects? Did you lose your hair? I will call UC Davis today right after radiation. Thank you again and I pray you feel healthy and this is behind you soon. ❤️❤️

@mamajite Thank you so much. That is so helpful. I believe the biggest disagreement is whether I have surgery first or the targeted drug and chemo for 9 weeks prior. Did you have surgery? Are you doing chemo alongside the targeted drug? How have you tolerated side effects? Did you lose your hair? I will call UC Davis today right after radiation. Thank you again and I pray you feel healthy and this is behind you soon. ❤️❤️

@bdurel hello. I have the EGFR Exon 19 mutation and was first diagnosed at stage 2b in 2018. Tagrisso is the targeted therapy for this mutation, although it is not helpful for ALL EGFR mutations. So it's important to know which EGFR mutation you have. Tagrisso doesn't hunt down and kill the cancer, but it does keep it from spreading. (Well, most of the time. My brain metastasis seems to be an exception, but that's another story.)

Chemo before or after depends on many factors, so I'm going to agree with everyone else and ask you to get more opinions. You don't have to stop at two!

Finally, in the 5+ years I've been taking Tagrisso, I've only had one payment of a couple thousand dollars. Your hospital or cancer institute should have a social worker that specializes in helping people in your situation.

I wish you all the best. Feel free to ask more questions. I'm a patient research advocate and have had a lot of training on different types of lung cancer and their treatments.

Kind Regards,
Matthew

@bdurel let us know how it goes with UC Davis. 🫶 Getting another opinion from a tumor board at a NIH Cancer Center (like UC Davis) should clear up the confusion. I'm not sure if your local clinic offers that. But a tumor board will have doctors with expertise from all relevant specialties review your case and decide the best treatment option for you.

I'm not a typical lung cancer patient. I have a genetic mutation that predisposes me to cancer (kind of like the BRCA gene for breast cancer.) I have ~30 lung nodules that were found accidentally and monitored. When I was diagnosed I had 3 primary tumors, each in a different lobe. So at that time, I was not a candidate for surgery. But because the tumors were found early I didn't do chemo. And because they all have EGFR mutations, I have been on Tagrisso for over 2 years now.

The side effects on Tagrisso are annoying but manageable. Around 10 months in I lost most of my hair. I am taking minoxidil and using red light therapy to help it grow. It's not like before, but I can get by without a wig. It doesn't affect everyone's hair, so don't be discouraged. Tagrisso's superpower is crossing the blood brain barrier, which is wonderful since this kind of cancer often mestastasizes to the brain.

@mamajite Thank you for sharing your story and such helpful information. I really have no one local to talk to so this online resource is so extremely helpful.

@bdurel Glad you have the appt with UCD. As mentioned before, I’m in Sacramento, but with another health system here but they seem to meet my needs right now. But UCD is great too. No breast cancer but I have lung cancer with EGFR. I started Tagrisso 5 days ago with samples from Oncologist, and someone called yesterday from hospital and helped me apply for a copay program that I qualified for my ongoing pills. I start chemo today but surgery wasn’t an option. I do have liver and brain mets but no radiation yet due to Tagrisso can cross blood brain barrier. Good luck with your UCD apt and 2nd opinion. Hugs!

@mamajite Thank you for sharing your story and such helpful information. I really have no one local to talk to so this online resource is so extremely helpful.