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    • #29309
      Tamara Cathey
      Participant

      I was diagnosed  with metastatic breast cancer last September 20, last chemo treatment Jan 4/21. Admitted to hospital in Septic shock on Jan 5th with Pneumonia. Tested multiple times for Covid but always negative. Pulmonologist said the CT scans looked like those of Covid patients. I survived the pneumonia but ended up with an ipf diagnosis.

      Finally discharged late Feb with 5l oxygen. Pulmonologist said there was nothing more they could do that I needed to be on hospice, get my affairs in order. What a shocker! Needless to say my husband and I were devastated by the news. He kept saying I wasn’t a candidate for surgery. No one would touch me. I was too high risk. I have been sitting at home since late Feb. I am unable to exercise but I can walk around the house for 2-3 minutes before desaturating to high 60’s. Sitting or lying down I stay in the mud 90’s.I got tired of just sitting around thinking about all this. I saw a second pulmonologist. He pretty much confirmed  the first one.

      I made an appointment to see the breast cancer surgeon in a week and see if she is willing to take the risk along with an anesthesia/pulmonary team. I will even sign papers relieving them of liability.

      Am I crazy or what? Would love some feedback.

       

       

    • #29313
      Christie
      Participant

      Hi Tamara @tamierni, I am so sorry to hear that you got a double whammy diagnosis. It’s simply not fair. I hope this forum can be of some help and comfort.

      I’m not sure quite what you’re asking in your last paragraph… are you trying to get the breast cancer surgeons to do something for your PF? Or refer you to get another opinion from a pulmonologist? It’s a bit unclear.

      What I do know is that you are not the only one to go through PF as a side effect of chemo. In fact, one of our very first columnists had a similar scenario. She wrote many columns that you might find relevant and helpful, as well as a book. Sadly she passed away while she was awaiting a lung transplant, but she was accepted to the transplant program in spite of her cancer history… it is certainly possible to pursue those treatments if you get the right team on your side.

      You can see her column in its entirety here. 
      She wrote a self-help book for PF patients (she was a therapist), which you can purchase here.

      Where do you live? I’d be happy to connect you with some people going through this in an area near to you, and maybe they can help you find doctors who could help with this process.

    • #29317

      Hi Tamara,

      Thanks so much for writing and starting this thread, though I am so sorry to hear of your journey — what a warrior you are! Christie is right about Kim’s book, she wrote about her journey with cancer and then IPF. I am always in support of getting a second opinion and hope the appointment with the breast cancer surgeon goes well. If you feel up to it, keep us posted.
      I’ll be thinking of you,
      Char.

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