Jdf1217 Posted November 24, 2019 Share Posted November 24, 2019 Hello everyone, I am new here and wanted to share my story. I am 32 years old and generally healthy. I had my third child (via c-section) in April of this year. Immediately after her birth I noticed a dull left flank pain. I went to urgent care and they did a urine test on me and said it was a UTI, gave me an antibiotic and sent me on my way. The dull ache remained but I didn't pay any attention to it. Finally in September I decided to get it checked again, the doctor thought it was a kidney stone and ordered a CT scan. The scan showed fluid around my left lung and a small mass (1.7 cm x .8cm) in the upper lobe of my left lung. I was referred to a pulmonologist who ordered a thoracentesis. Immediately after having the fluid removed (600 cc's) the pain was completely gone and I felt great. The pulmonologist order tests on the fluid but was confident the fluid was from my c-section, due to my history and completely normal bloodwork. However, the pathology report came back and showed malignant cells (Adenocarcinoma). I was referred to an Oncologist who diagnosed me with Stage 4 Adenocarcinoma (lung cancer). They took blood to test for gene mutations, luckily my PET scans and MRI shows that the cancer is only in and around my left lung. This has been such a whirlwind of emotions. I can't even deal with the thought of my children growing up without their mom. Obviously, when you look up Stage 4 lung cancer the outcomes don't look very good but I am determined to beat this! Link to comment Share on other sites More sharing options...
Curt Posted November 24, 2019 Share Posted November 24, 2019 Hello @Jdf1217 First off congratulations on the birth of your third child. My wife and I have three boys; 11, 9 and 6. Three is a game changer. I am really sorry to hear about your diagnosis and what you are going through. Finding out you have lung cancer, especially at a young age is very scary. I was forty two when I was diagnosed last year. I’m considered young, you are considered very young. Ignore what you read online about prognosis. Those numbers are for people who were diagnosed five years ago and for people of all ages and health. They also don’t reflect all of the treatments that have become available in the last five years. The fact that it is localized in one lung, that you are young and that you have so much to live for all work in your favor. Have they done a biopsy of the cancer yet? Normally genetic testing on blood work is what is called germline genetic testing. That testing determines if “you“ have any hereditary mutations that predispose you to lung cancer. A biopsy of the cancer cells would allow them to do somatic genetic testing of the cancer itself to identify if “it” has any genetic mutations. If there are any mutations your treatment can be tailored specially to them. I know this is terrifying but it is confront able. I’m glad you found this site. It’s been a great source of support for me. I hope it also provides you with what you need during this time. Hang in there. Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 24, 2019 Share Posted November 24, 2019 Hi @Jdf1217 I'm so sorry you have to be here. We all know the devastation of receiving this diagnosis. It's important to know that you are not alone. We're a family here you can say anything without judgment. Can you share what your proposed treatment plan is? Curt is correct, Dr. Google is not our friend. This essay by Stephen J. Gould shows why: http://jonathantreasure.com/the-median-isnt-the-message-stephen-jay-gould/ My doctor gave me this to read and it was a game changer for me. I saw a webinar recently with the Head of the Canadian Health Service Oncology- in it she said that 100 years ago lung cancer was a very rare disease but it was considered a woman's disease that occurred during pregnancy and menopause. The Canadian researchers are studying this to determine why young women are at risk for lung cancer. Diagnosis is not prognosis! Please look at this blog by Emily Bennett Taylor, she's a young women diagnosed with Stage IV lung cancer and BEAT IT: https://embenkickscancer.wordpress.com The key to her success was willing to push conventional oncology and not take NO for an answer. She found a surgeon at Memorial Sloan Kettering to perform a life saving procedure. Lung cancer is complex and while most treatment plans today are very straightforward, having access to a top notch medical team is absolutely critical. You may want to contact the GO2Foundation or LUNGevity's help line to ensure you are matched with an expert. There is hope. Hang on as this is a wild ride. We'll be here for you through all of it. Michelle Link to comment Share on other sites More sharing options...
BridgetO Posted November 24, 2019 Share Posted November 24, 2019 Hi Jdf1217 and welcome. I'm sorry to hear about your diagnosis. Curt has said what I would have said and said it better.! Ignore Dr Google regarding prognosis. Be sure you've had a biopsy and somatic genetic testing (also called biomarker testing or tumor genetics). Not all biopsies include this. Usually the pathologist looks at the cells under a microscope and reports on what he/she sees. The biomarker testing requires a tumor sample to be sent out to a specialty lab for additional testing. Biomarkers show what the best treatment for your cancer is likely to be. Hang in there and keep posting. Let us know what questions you have and how we can support you We're here for you. Bridget O Link to comment Share on other sites More sharing options...
Tom Galli Posted November 24, 2019 Share Posted November 24, 2019 Jdf, Welcome here. Having said that, I'm sure you would rather be enjoying your life and children than worrying about lung cancer. So, let's start with some questions. You said stage IV adenocarcinoma but report only one location of a tumor--the left lung. Are there tumors in the lung and in the pleural space between the lung and interior chest wall? Because you are diagnosed so young, there is a chance your adenocarcinoma might display biomarkers that point to a targeted therapy as a potential treatment. To confirm, a special laboratory performed tissue biopsy (not blood test) analysis is required. Your diagnosis resulted from a fluid biopsy. Has your doctor suggested a tissue biopsy to screen for targeted therapy as a possible treatment? Stage IV adenocarcinoma outcomes have really improved in the last 10 years. To explain the inaccuracy of "Dr. Google" survival statistics and reinforce Michelle's suggestion of Gould's essay, read here. And here are some tips and tricks that might help as you go forward into treatment. In February, good Lord willing, I will have survived sixteen years after diagnosis with lung cancer. I had many surgeries, lots of infusion, and glow in the dark from radiation, but I'm here. That suggests that if I can live, so can you. Stay the course. Tom Link to comment Share on other sites More sharing options...
Jdf1217 Posted November 24, 2019 Author Share Posted November 24, 2019 So the reason they staged me at stage 4 is due to cancer cells being found in the fluid in the plueral space. They are testing the blood and the fluid for the genetic mutations. They are bot confident that they can get enough tissue from the only tumor I have because it's only 1 cm. Really it's just a waiting game at this point. I go back to the oncologist Monday morning. I went to MD Anderson last week and they are also going to be following on the background. Link to comment Share on other sites More sharing options...
Curt Posted November 24, 2019 Share Posted November 24, 2019 Too small to biopsy is a good thing but frustrating. I was in the same situation. I opted to have a wedge resection to remove it without knowing for sure if it was cancer. I have a fairly significant family history of lung cancer. I really hope there are better, less invasive diagnostic tools on the horizon. Link to comment Share on other sites More sharing options...
Jdf1217 Posted November 25, 2019 Author Share Posted November 25, 2019 Finally got all my labs back. I tested positive for the ALK mutation and will start Alectinib, once TriCare approves it! Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 25, 2019 Share Posted November 25, 2019 I suspected you were ALK. I am too! You might want to join the Facebook support group to meet 1800+ people just like you. Welcome to Alectinib, you’ll be feeling good very quickly! Mine worked after the first dose! Link to comment Share on other sites More sharing options...
Jdf1217 Posted November 25, 2019 Author Share Posted November 25, 2019 44 minutes ago, Rower Michelle said: I suspected you were ALK. I am too! You might want to join the Facebook support group to meet 1800+ people just like you. Welcome to Alectinib, you’ll be feeling good very quickly! Mine worked after the first dose! That's awesome news!! I hope it works so fast for me too! I will definitely join the facebook group! Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 25, 2019 Share Posted November 25, 2019 So glad you have a plan! LUNGevity has an ALK Facebook group, too. https://www.facebook.com/groups/ALKlung/ Link to comment Share on other sites More sharing options...
Jdf1217 Posted November 25, 2019 Author Share Posted November 25, 2019 4 minutes ago, LUNGevityKristin said: So glad you have a plan! LUNGevity has an ALK Facebook group, too. https://www.facebook.com/groups/ALKlung/ Thank you! I just sent a request to join! Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 25, 2019 Share Posted November 25, 2019 I hope to see you at the ALK Summit next summer- it’s a great way to meet other people with ALK. It’s the first weekend in August. You’ll be onto the recovery road soon. Link to comment Share on other sites More sharing options...
Jdf1217 Posted November 25, 2019 Author Share Posted November 25, 2019 I will definitely have to look into that!!! Link to comment Share on other sites More sharing options...
Niess Posted November 30, 2019 Share Posted November 30, 2019 Hi there and welcome. I am pretty new here too and if you haven't already realized, the people here are just fantastic, knowledgeable and very loving. You don't ever....I mean ever, have to be alone through all this. I see many of the long time members have given you advice and encouragement and I'm not as well versed as many but I'm here wishing you well. Link to comment Share on other sites More sharing options...
Asiedu Posted December 2, 2019 Share Posted December 2, 2019 Your story feels like mine ,hold your heart and God will make a way when there seem no way Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.