KizzyMittens Posted January 11, 2021 Share Posted January 11, 2021 I was recently diagnosed with SCLC on 11/25/20. It was not the diagnosis I was expecting. I was scheduled for a hysterectomy on December 3rd and needed chest x-rays to clear me for surgery, which is when they found the tumor in my lung. I have also been diagnosed with MGUS. I'm 50. I have been looking for a place to get to know people like me, and hopefully this is it. Any help, kind words, or advice is much appreciated! Link to comment Share on other sites More sharing options...
GaryG Posted January 11, 2021 Share Posted January 11, 2021 Hi and welcome to the site. Sorry to hear about your diagnoses and hope you get the support and help you are looking for. First we need to know a bit more about your cancer. What stage is your cancer? Did you have any tests and if so what are the results? Are you currently receiving treatments and if so what are they? Link to comment Share on other sites More sharing options...
LouT Posted January 11, 2021 Share Posted January 11, 2021 Hi KizzyMittens, Welcome to the club nobody wants to be a part of. There are a large number of people here who have had LC (Lung Cancer) in all forms, stages and prognosis. Also a large group here are survivors who are doing well today; so my first sharing to you is never to give up hope. This is a long and often difficult journey and I've found the family here to be invaluable in my getting through my situation. As Gary said, the more you can share about your situation (tests, diagnosis, proposed treatments, etc.) the more support we can give you. Our approach here is to share from our experiences and tailor that information to what you need in particular. So please tell us what you can as well as any questions you have that we can help answer. In the meantime there is some reading on Lung Cancer 101 that may help you. It can be found here. We look forward to helping you through this together. Lou Link to comment Share on other sites More sharing options...
KizzyMittens Posted January 11, 2021 Author Share Posted January 11, 2021 ,,Because I have SCLC, there are no official stages. But I am considered Limited ans Stable. I have had blood tests, x-rays, CT scans, a PET scan, and an MRI in the last month. (Oh and a hysterectomy also! 😃👍. I just finished round 2 of my Chemo which includes Carboplatin, VP 16, Tecentriq, and Neulasta On-Pro. I start Radiation on 1/25. 😐 Link to comment Share on other sites More sharing options...
KizzyMittens Posted January 11, 2021 Author Share Posted January 11, 2021 Thanks so much for replying you guys! I am so lost and confused,all I do is spend time trying to be Dr. Google, and that's not working well. My mind is working at 50% capacity maybe? And I forget everything I thought I remembered. 🤔 I have so many questions about my lab work and such, but unfortunately my Oncologist is too busy to answer them. I only get to see him once every 3 weeks..for 15 minutes. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted January 11, 2021 Share Posted January 11, 2021 Welcome to the group. We are unable to give medical advice, but if you have questions about terms or treatments, please feel free to post them. Here is Small Cell Lung Cancer 101 which might give some additional information and insight for you: https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/small-cell-lung-cancer-sclc How are you feeling after your surgery? Link to comment Share on other sites More sharing options...
LouT Posted January 11, 2021 Share Posted January 11, 2021 KizzyMittens, Okay, you've been able to share more information and that will be helpful. I myself have not had chemo therapy as my treatment was surgical, but many others here have and possess a load of knowledge on the protocol. Please stay tuned for them. In the meantime, you may want to stay away from Dr. Google. First, there is too much information to consolidate and most of it may not relate to your particular situation. Secondly, the posted prognosis and survival stats are "out of date". They are normally five-year running averages that may not accurately reflect the survival rates based on today's much improved treatments. So, please stay away from there and get your information (especially survival prognosis) from your treatment team and what we can give you here. Lou Link to comment Share on other sites More sharing options...
GaryG Posted January 11, 2021 Share Posted January 11, 2021 30 minutes ago, KizzyMittens said: Thanks so much for replying you guys! I am so lost and confused,all I do is spend time trying to be Dr. Google, and that's not working well. My mind is working at 50% capacity maybe? And I forget everything I thought I remembered. 🤔 I have so many questions about my lab work and such, but unfortunately my Oncologist is too busy to answer them. I only get to see him once every 3 weeks..for 15 minutes. Your oncologist have an obligation to answer your questions. In addition you must also be seeing a PA that will answer your questions. Have you tried to submit them in an e-mail? I assume your oncologist is in Tallahassee and if you are not satisfied with him then by all means get another one. Link to comment Share on other sites More sharing options...
Sandy N Posted February 1, 2021 Share Posted February 1, 2021 On 1/11/2021 at 3:30 PM, LouT said: In the meantime, you may want to stay away from Dr. Google. First, there is too much information to consolidate and most of it may not relate to your particular situation. Secondly, the posted prognosis and survival stats are "out of date". They are normally five-year running averages that may not accurately reflect the survival rates based on today's much improved treatments. So, please stay away from there and get your information (especially survival prognosis) from your treatment team and what we can give you here. Lou Lou, thank you VERY MUCH for making a point to include this in your posts. You are indeed spot on in that the Dr. Google prognoses are extremely dismal and fill one with despair and, of course, that was one of the first "Dr.s" that I consulted when my morbid curiosity got the best of me. Yep, us LC patients have hopes for a future, and a bright one at that thanks to the vast research and new drugs available. And I have a running deal with my oncologist - NO LIFE EXPECTANCY discussions, or even blurting it out. If I want to know, I'll ask. I'm more about life than death! Link to comment Share on other sites More sharing options...
Sally Lash Posted February 4, 2021 Share Posted February 4, 2021 Hi KizzyMittens, I’m also relatively newly diagnosed, squamous small cell and new to this site. Keep a list of your questions, see if you can bring someone so they can write down the answers, if you can’t, tell your doctor you will have someone on speaker that will be part of the discussion, record your visit also. He can not just walk out at the 15 minute mark so keep talking. Ask for a nurse navigator to call you twice a week to check in. I was a great advocate for my parents but not for myself. The folks here gave me a good shake to wake up thank goodness. I even told my doctor to change his attitude with me or I’d be finding a new doctor. Lucky for me he didn’t throw me out of the office but instead thought it was amusing and now we both look forward to my appointments. If your doctor can only give 15 minutes speak up and say you need more time than that. He might think you are ok with such a short appointment. You won’t know until you ask. I agree with everyone about Dr Google, the internet is not our friend. Link to comment Share on other sites More sharing options...
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