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Diagnosed with breast cancer & primary lung cancer: Next steps?
Lung Cancer | Last Active: Mar 6 10:09am | Replies (26)Comment receiving replies
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.
Replies to "I wanted to update my previous post but I’m not sure I’m doing it correctly. Anyway..."
@bdurel, you have a lot going on. So much information to digest and decisions to be made about lung cancer while also going through radiation for breast cancer.
Let me start by saying - breathe. We've got you. You're not alone.
I think it is good that you are considering a second opinion. You want to have confidence in the choices you are making with the best information. At Mayo Clinic, a patient can self-refer. Check to see if UC Davis has the same option if your current oncologist is not making the referral for you.
You might also consider asking for an appointment with an oncology social worker. They are social workers specializing in helping people with cancer. Mayo has them for each type of cancer. Your hospital likely does too.
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
The social worker may be able to help with coordinating care, referrals, drug costs and pharmaceutical financial assistance programs, as well as listening and support your emotional and mental well being. Social workers are really helpful and a good member to have on your team.
Hopefully your surgeon and your oncologist will speak with one another. This is when a second opinion can help with determining the best course of treatment: It seems like you need more information to be able to choose whether to have chemo then surgery or vice versa. I'm tagging a few members like @flusshund @amareese @lmd1 who are familiar with EGFR mutation lung cancer and may have more insight about treatment for early stage EGFR lung cancer.
I can imagine you just want the cancer out. You're nervous about it growing while waiting for decisions to be made. That's completely understandable. Let's take a minute again - breathe.
You've got time to make the right decision for YOU. You have time to get the information you need to be confident in your decision.
It's the weekend. Just know we're here. I hope knowing that helps lower the stress. Sending a virtual cup of tea. Keep talking out loud. Ask questions. We're listening.
@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
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@bdurel I’m a patient like you. I don’t have any answers for you, but feel for your dilemma. Sounds like a 2nd opinion would be good, but I don’t know steps either. We may live in same proximity since you mentioned UCD. Maybe search Mayo on how to get 2nd opinion.