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

@artistrose Thank you for your reply. I’m so sorry you are going thru this. So do you know, is chemo always recommended alongside Tagrisso? Or do they sometimes just use Tagrisso? I finish breast radiation on Tuesday and then I think I’m supposed to start on a hormone blocker. My husband just said “I hope they don’t give you bad info at Davis”. Ugh. I’m really trying to stay positive thru all this. ❤️❤️

@bdurel As far as UCD, you’re getting a second opinion, doesn’t mean you have to take their advice. But gives you more info. With my first Oncology visit I asked if I could record the visit on my phone and she said yes. That way I could listen later in case I forgot something said or needed to review.
With Tagrisso, my understanding is it can be done with or without Chemo. My doctor wants me to do both, but every person’s situation is different. I did read a a research paper that showed extended survival times with both chemo and Tagrisso, compared to just Tagrisso. However, I imagine if a patient couldn't tolerant the Chemo they could continue with Tagrisso alone. As I mentioned, I have liver and brain mets so maybe that’s why they want me to do both. Look forward to your future posts.

@bdurel I'm glad you are able to be seen at UC Davis - that's great. It helped me to write down all of the questions I had before my appointment because it's easy to forget some in the moment. Do you happen to know which EGFR mutation(s) you have? Have they given you an official diagnosis yet?

this is a helpful resource from the American Cancer Society that explains the usual treatment protocols for all the stages of non small cell lung cancer.
https://www.cancer.org/cancer/types/lung-cancer/treating-non-small-cell/by-stage.html

@artistrose Thank you. So far my doctors have all prohibited recording. I’ve assumed it’s for insurance purposes. But Thank you for mentioning that because I’ll ask at the UCD appt. It would be very helpful since I’ll be going to appt alone most likely.

@bdurel I’m seeing Sutter docs as thats my part C medicare plan. I called 2 days ahead and asked the office about recording. They told me to just ask the doctor at the meeting. So when I first met with the Oncologist I asked upfront and she said yes. She seemed completely ok with it. After all, they are recording you with their AI technology. But …they have to ask you first if it’s ok with you. As long as you’re upfront and ask at the beginning of the meeting, I’m guessing they’ll say ok. That way you can play the recording at home so your husband can hear too, if he can’t come. Or ask a trusted relative or friend to come along. My husband came with me but he is ADHD so I couldn’t count on his recall, hence the taping.

@artistrose Hopefully Dr Gandara at UCD will allow recording. That would be SO helpful. In my hometown of Redding my doctors are at Valor Oncology and they said no recording as well as having that posted on the walls in their exam/treatment rooms. I took my husband to 1st 2 appts but he is older, hard of hearing, and doesn’t do well in these situations. He just sat looking disinterested and didn’t hear or recall anything. So then I took a close friend to one appt which hurt his feelings terribly and he reacted badly. So I just started going alone to everything. For the surgery consult I did take a friend again but I didn’t tell my husband. She was very helpful at helping me recall important details. I wish I could take her to UCD appt but husband wants to go & she doesn’t want to go if he goes and he sees no need for another person. I know this is about me but I can’t help trying to protect feelings of others. When I had lumpectomy I brought a friend because I thought there might be aftercare instructions to relay. My husband was to drop us at door, park the car, and then join us. We waited. He had dropped us off and gone home to watch tv. I’m handling this the best I can but it feels difficult sometimes. Your advice & support is very appreciated.

I was able to get a 2nd opinion at UC Davis from Dr David Gandara. He no longer treats patients but is highly regarded. He recommended surgery first. CT scan showed tumor just over 3cm x 3 cm, then PET scan said 4 cm. On 3/26 I had left lower lobe removed. The tumor was over 8 cm x 8 cm so about 3 inches x 3 inches. How could scans be so far off? Anyway I met with the med oncologist and he said he & Dr Gandara believed the pathology report run locally was inaccurate because it said my cancer was non invasive and that’s not typical of a tumor that size. So they re ran the pathology at UC Davis and it came back as invasive. One margin was also positive which dashed my hopes of having surgery alone be curative. At 3 weeks the chest tube incision was causing me excruciating pain so my PCP removed the stitches as he said the surgeon leaves them in too long. But then a big open hole appeared that I couldn’t see before. 2 days ago I saw the oncologist again and he told me I’m now considered a stage 3A. He wants to start 4 rounds of chemo right away with Carboplatin & Pem. At the same time do 8 weeks of radiation. Then follow with 2 years of Tagrisso. He told me to hold off on my dental work and referred me to wound care for the chest tube incision. I’m worried that the chemo will keep it from healing. I’m still suffering with a large seroma from my Jan 7 lumpectomy. My body is so uncomfortable. My breasts feel like 2 heavy painful watermelons. He said we can’t wait for the wound to heal. He said he’ll order a chest port but I’ll probably have to use a picc line for first one because of scheduling. I have a video appt Wed with Dr Gandara to see if he agrees with my treatment plan. I forgot to ask about the breast cancer pill I was told early on that I would have to take. All focus has shifted to lung right now. I’m afraid of chemo. They don’t have any cold capping support in my area so I guess I’ll just take my chances on hair loss. I’m also afraid of the radiation because it’s on the left side and I only have half a lung plus the heart is there. I expect I’ll start getting calls starting tomorrow to line some of this up. Next Sunday is my husbands bday so I’m trying to plan something nice while totally preoccupied with all this. I’m trying not to totally isolate but I’m fatigued and have started coughing a lot more this past week and I’m uncomfortable with or without a bra because of the seroma and now the hole from the chest tube.

I was able to get a 2nd opinion at UC Davis from Dr David Gandara. He no longer treats patients but is highly regarded. He recommended surgery first. CT scan showed tumor just over 3cm x 3 cm, then PET scan said 4 cm. On 3/26 I had left lower lobe removed. The tumor was over 8 cm x 8 cm so about 3 inches x 3 inches. How could scans be so far off? Anyway I met with the med oncologist and he said he & Dr Gandara believed the pathology report run locally was inaccurate because it said my cancer was non invasive and that’s not typical of a tumor that size. So they re ran the pathology at UC Davis and it came back as invasive. One margin was also positive which dashed my hopes of having surgery alone be curative. At 3 weeks the chest tube incision was causing me excruciating pain so my PCP removed the stitches as he said the surgeon leaves them in too long. But then a big open hole appeared that I couldn’t see before. 2 days ago I saw the oncologist again and he told me I’m now considered a stage 3A. He wants to start 4 rounds of chemo right away with Carboplatin & Pem. At the same time do 8 weeks of radiation. Then follow with 2 years of Tagrisso. He told me to hold off on my dental work and referred me to wound care for the chest tube incision. I’m worried that the chemo will keep it from healing. I’m still suffering with a large seroma from my Jan 7 lumpectomy. My body is so uncomfortable. My breasts feel like 2 heavy painful watermelons. He said we can’t wait for the wound to heal. He said he’ll order a chest port but I’ll probably have to use a picc line for first one because of scheduling. I have a video appt Wed with Dr Gandara to see if he agrees with my treatment plan. I forgot to ask about the breast cancer pill I was told early on that I would have to take. All focus has shifted to lung right now. I’m afraid of chemo. They don’t have any cold capping support in my area so I guess I’ll just take my chances on hair loss. I’m also afraid of the radiation because it’s on the left side and I only have half a lung plus the heart is there. I expect I’ll start getting calls starting tomorrow to line some of this up. Next Sunday is my husbands bday so I’m trying to plan something nice while totally preoccupied with all this. I’m trying not to totally isolate but I’m fatigued and have started coughing a lot more this past week and I’m uncomfortable with or without a bra because of the seroma and now the hole from the chest tube.