Back For Cancer #3

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winsomebulldog
winsomebulldog Member Posts: 117 Member
edited July 2023 in Colorectal Cancer #1

Hi all. As a bit of background, I had IIA breast cancer in 2010, treated by lumpectomy, chemo, rads, and a year of Herceptin. At the time of this diagnosis imaging noted several nodules in my lungs that were believed to be related to previous history of severe asthma triggered by allergies. They were stable and did not react on PET so have been simply monitored with occasional CTs.

In January 2021 a routine Dr. visit showed I was anemic. Fecal occult blood test came up positive so I got my first colonoscopy and was notified before I was even fully awake afterwards that it was highly likely to be cancer. Next came a partial colectomy and CAPOX.

At my 1yr follow-up colonoscopy, Dr. saw some tissue she didn’t like the looks of at the site of a non-cancerous polyp removal from the previous year. Came back as pre-cancerous, so then I got a total colectomy in March 2023.

In July 2022 a CT noted that a previously stable lung nodule had increased in size since the scan 3 mos. earlier. Another CT in October saw further growth. Radiologist recommended PET. The nodule (in left upper lobe) and a lymph node in my right lung both lit up. Had a bronchoscopy in Jan of this year. Dr. didn’t think he could get to the nodule, so hoped a biopsy of the lymph node would give answers. It did not. No cancer found in the lung wash they did or in the biopsy of the lymph node, though the node did have evidence of necrotic cells. Repeated the PET and both nodule and lymph node still lit up. Then we did another CT to get a more accurate measurement of the size. It had continued to grow, so Dr. wanted to repeat the bronchoscopy. I opted to seek a second opinion at a Pulmonologist affiliated with a better equipped hospital. Had the navigational bronchoscopy biopsy of the nodule and EBUS of the lymph node on July 7. Results are a metastasis from the colorectal cancer from two years ago in the nodule. Guess the CAPOX didn’t get it. The lymph node again came back with no malignancy, just necrotic cells.

So, I am getting another PET at the end of this week and will see a thoracic surgeon the first week in August. My oncologist (She treated the colon cancer. Breast cancer was in another state.) has said that assuming the PET doesn’t show any new Mets, she doesn’t think I’ll need adjuvant treatment after the surgeon removes the nodule. She’s requested a FoundationOne CDx test. I just got the call from them today. I’m find with getting the tumor genetically tested, but my insurance isn’t going to cover it unless it’s being done to identify a possible targeted therapy.

I’m really not sure how I feel about going with surgery alone. Has anyone else gone this route? Should I be worried about further mets showing up down the line? I’m not actually sure if a lung met can spawn further mets or if they’re all only secondary to the primary cancer. I know I should ask my oncologist these questions and I will, I’m just wondering if anyone here has advice or experience to offer.

Anyway, I’m in the waiting for tests and appointments zone for the next couple of weeks, which are the worst times for me. I’m fine once I know the plan. I just hate the limbo between “something’s wrong” and “here’s the plan of attack.”

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  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
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    My word, you have gone through the wringer. I can't even imagine dealing with two separate Cancer diagnosis; you are a real trooper.

    I can't answer any of your questions, but I can welcome you here on the forum, and wish you well with your upcoming tests and decisions about surgery and treatment.

    I hate insurances, who get to play God with our lives. I hope something works out with them, as I would really fight their decision.

    Tru

  • reneelynn1214
    reneelynn1214 Member Posts: 17 Member
    #3
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    Sorry to hear you have to endure this all multiple times. I don’t know the specifics but I do know that the new treatment protocol for colorectal cancer is total neoadjunct treatment to avoid surgery but once the cancer doesn’t respond or you get a secondary tumor, they do surgery. Seems like in your case, surgery is the best first step but I would assume they would follow it up with some type of chemo to kill any cells they can’t see. I would ask and advocate for yourself as to your concerns and have them explain why, and outlooks. I’m learning you have to ask very specific questions so write them out and get them all answered!

    I also loathe the insurance process and am in the midst of some insurance snags but my health comes first and I don’t care what they will or won’t cover, so push for what gets you need and ask for any financial resources in your area. There are ways they will still do it or pay a portion of it even if insurance won’t cover it. When I had the Braca gene test, I didn’t get it covered but they had a secondary insurance that allowed me to get tested for only $300 vs thousands.

    good luck, this isn’t your first rodeo- you got this!

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