LucyVT Posted December 30, 2018 Share Posted December 30, 2018 I had a small lesion removed from my upper right lobe in May 2012. It was an adenocarcinoma, Stage 1a, so I considered myself super lucky. Surgical cure, no radiation or chemo. I have had CTs every year to look for any recurrence or other issues. All was well until my scan on 11/12 - my pulmonologist emailed me that there is a new 'focal area of concern' to watch. This spot has doubled in size in the past year. Coincidental to doubling my methotrexate dosage. I have RA and take methotrexate and a biologic, Simponi. 7 years ago when the first lesion was discovered the doctors advised to stop both of those meds which left me with prednisone only. I have an appointment with oncology on Monday, 12/31 to discuss this new development, my medications, and plans to evaluate this new focal area. I am pretending to be so optimistic around my friends and family, but inside I just know it is a recurrence. I need some realistic support and answers - which I hope I can get soon. Thanks for having this support system. Link to comment Share on other sites More sharing options...
Tom Galli Posted December 30, 2018 Share Posted December 30, 2018 Lucy, Welcome here and I know what you are feeling. I had 4 recurrences after supposedly curative treatment. Each one was a heart break. Notwithstanding your RA complication, thankfully you already know the drill. Depending on the size and shape of the “focal area”, perhaps a PET scan or a biopsy. I still think even if a recurrence there should be optimism in an early find thanks to your monitoring. Best suggestion I have at this juncture is a second set of ears and the oncology consultation to ensure understanding and all questions are asked and answered. If you are comfortable, let us know the results of the oncology consult. We’ll field questions also. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted December 30, 2018 Share Posted December 30, 2018 Hi Lucy and welcome here. I don't have anything to add to what Tom had to say. Just wanted to welcome you. Let us know how we can support you. Bridget O Link to comment Share on other sites More sharing options...
CIndy0121 Posted December 30, 2018 Share Posted December 30, 2018 Welcome, Lucy! We look forward to what else you learn tomorrow at your appointment and the options for proceeding. I’m afraid I do not understand what complications methotrexate present in this case, except that you are dealing with an autoimmune disease that could affect treatment decisions. Please let us know what you learn and what next steps you are considering. Best wishes and hoping you start out with a Happy New Year! cynthia Link to comment Share on other sites More sharing options...
Curt Posted December 31, 2018 Share Posted December 31, 2018 Hi Lucy. I hope your follow up went well today and provided some answers for you. Link to comment Share on other sites More sharing options...
LucyVT Posted January 1, 2019 Author Share Posted January 1, 2019 My appointment went well. My doctor is an interventional pulmonologist. We talked for a long time and he answered my questions. He showed me my 2017 and 2018 CT scans side by side to see the growth of the lesion. It is a pleural lesion, not in my actual lung. Immediate next step is a full body PET scan and a biopsy of the lesion - and other decisions based on the PET and biopsy results. I feel like I was heard and my thoughts mattered. Collecting information is the best thing we can do and I have to take it one step at a time. I felt better right after the appointment, but now as the evening winds down I feel overwhelmed. A good night's sleep will help and I will start fresh tomorrow. Thank you all for your kind words and support. I will keep you posted. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 1, 2019 Share Posted January 1, 2019 Lucy, A good consult, all things considered. Happy New Year! Stay the course. Tom Link to comment Share on other sites More sharing options...
CIndy0121 Posted January 1, 2019 Share Posted January 1, 2019 Lucy, So glad you felt better after your appointment. It’s really important that you feel heard by your providers. That sounds like a logical plan going forward. I totally know the feeling of encouragement during the “lighted day”, and having those questioning thoughts sneak in as evening comes. You are not completely new to this, so I can see you already are “pacing yourself” and taking one step, one result, one decision at a time. Check back in after your PET and biopsy. We’ll be here! cynthia Link to comment Share on other sites More sharing options...
Roz Posted January 1, 2019 Share Posted January 1, 2019 Hi Lucy, Sounds like you have a doc that you have confidence in and who listens to you. If you have any questions after your PET and biopsy, ask away. Since you have been so vigilant about follow ups, it sounds like you have caught this early. Best of luck to you as you move forward. Ro Link to comment Share on other sites More sharing options...
LucyVT Posted January 15, 2019 Author Share Posted January 15, 2019 The PET showed no other areas of concern. This is great as I think my doctors were sure this new lesion was a metastasis from somewhere else. The radiologist thinks the pleural 'lesion' looks slightly smaller but my interventional pulmonologist feels this is sort of an apples to oranges comparison. He wants to do another CT (with contrast this time) in a month which will be three months since the one that showed the growth/doubling in size of this 'lesion.' Then we can compare the two CT scans. On an interesting side note - I stopped my methotrexate for the month prior to the PET. Even though my doctors did not feel there is a connection, I felt that since I had almost doubled my methotrexate dose in the year that the lesion doubled in size, that this was very coincidental. I have now gone back on it so we shall see what happens. I felt I needed to maintain my RA treatment to keep overall inflammation to a minimum. To confound things I am trying to taper prednisone, having been a long time high dose user. My own cortisol levels are extremely low. Nothing to do with lung cancer - but affects my overall health. I will check back in after the next CT in about a month. thanks for being here for support! Link to comment Share on other sites More sharing options...
BridgetO Posted January 15, 2019 Share Posted January 15, 2019 Pet results very encouraging! Best wishes and keep us posted. Link to comment Share on other sites More sharing options...
Steff Posted January 15, 2019 Share Posted January 15, 2019 Lucy, Great news about your scan! I hope things continue on this track for you. Link to comment Share on other sites More sharing options...
CIndy0121 Posted January 15, 2019 Share Posted January 15, 2019 Lucy, Is there any alternative to methotrexate for RA. I also have an autoimmune disease and my lung cancer is in remission, but they do not want to use methotrexate. I am on prednisone and something “off label” that I had to appeal with my insurance company, but it seemed like the malignancy history was what got me the approval. cindy Link to comment Share on other sites More sharing options...
LucyVT Posted January 15, 2019 Author Share Posted January 15, 2019 I wish. I am taking methorexate to increase the efficacy of Simponi (a biologic that is injected once a month). I failed on Enbrel, Humira, and a host of other meds. When my first lung cancer lesion was found I had to stop methotrexate and the biologic I was on at the time - Enbrel. All I could take was prednisone. My drs do not want me to up my prednisone as I have developed some spinal fractures. Not many choices for me. Link to comment Share on other sites More sharing options...
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