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mmason

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Everything posted by mmason

  1. Hi everyone. I wanted to give an update to my earlier post on my mom. After being denied a referral to MD Anderson by her insurance we got her oncologist to refer us to a thoracic surgeon while we waited on her resubmitted referral. He began by stating that according to her CT, positive PET scan and one biopsy that diagnosed squamous cell lung cancer she was considered a stage IIIb non surgery candidate. None of her biopsies confirmed she had cancer in her lymph nodes, they were inconclusive but they were very hot on the PET(subcarinal node particularly). We spent about an hour with the surgeon and by the end of our visit had convinced him to do surgery b/c the only way to definitively stage her and to get to the node was a thoracotomy. We pointed out that she could end up a stage I if the nodes weren't positive. He agreed only b/c she had 2 previous unsuccessful biopsies of nodes and to start tx she needed to know. Anyway, long story short, mom does not have lung cancer she has Histoplasmosis. This is a fungal infection that we have repeatedly asked the pulmonologist if she could have. The surgeon called her this past week with the final path report and said everything looks good. He "consulted" with the original pathologist who diagnosed the nsclc and he admitted it could've been infection. This has been the most stressful 3 months of my life especially since I had a baby and my mom's first grandchild one week before all this started. I want to say thank you to everyone on this board for the support and hope they provide. I have learned so much from the posts I've read and every time I thought I was losing it I would come to this site. This site is full of wonderful, brave people fighting this horrible disease. I learned to push for second and third opinions and arm yourself with knowledge. The doctors don't know everything. Her oncologist gave us the option of meeting with the surgeon or starting chemo and radiation!!! Going through all this has opened my eyes to what a horrible disease lung cancer is and the need for more research. I am definitely going to do all I can to help in this fight.
  2. Hi all. Unfortunately I have had to find this site but thank God I did. It has definitely given me hope when facing this disease. My mom was just dx 4-28-06 with NSCLC(squamous cell) and it's all been very confusing. A brief history on her: Dx 2000 with invasive lobular breast cancer Stage IIB. Had double mastectomy although cancer was only found on left side but she didn't want that additional worry. Went through chemo and radiation. Has been on tamoxifen since. Has had regular screening with all clear until March. She went to primary Dr. with slight inflmmation under left arm. Had chest x-ray and spot found in right middle lobe of lung. Proceeded with CT and PET scan. Areas of hypermetobolic activity found in peribronchial lymph node area and subcarinal area. The nodule that showed up on the x-ray didn't have any uptake. It's on the periphery and measures approx 1.6 x 2.3 cm. Mom's oncologist referred us to the pulmonologist for biopsy and reassured us that not all hot spots are cancer. She was scheduled with pulmonologist for bronchoscopy. He found a 2 cm nodule in one of the bronchial tubes and biopsied that with significant bleeding. Couldn't get samples of nodes or middle lobe spot but was pretty sure it was all cancer. Not the most compassionate man. Finally got in touch with my mom 5 days later and the results were inconclusive so he wanted to try again. Second bronchoscopy was done 4-26-06 and he felt he got better samples. Called my mom Fri the 28th to tell her she didn't have metastatic breast cancer but a primary squamous cell lung cancer. The node biopsies weren't back yet but he thought it was pretty advanced. We were shocked! My mom has never smoked and we were definitely counting on the small chance that this was something infectious. Besides, she feels fine. He basically didn't give her much chance and didn't think she was a candidate for surgery. Mom had an appointment with the oncologist scheduled for that afternoon. He didn't have much to say just that he doesn't believe anything until it's all layed out in front of him. He told her he would present her case to the tumor board on the following Wed. and for her to email him. In the meantime we have been working on getting things together for a consult with MD Anderson. Well, last week as we tried to deal with this diagnosis my mom had calls and emails into her oncologist to see if he would begin on a referral for her. Not only did he never get back to her but my Dad(an OB/GYN and my mom's ex-husband) was finally able to get through to his nurse and was told he didn't present her case to the board and he was probably going to recommend combo chemo and radiation. My Dad also was able to talk to her pulmonologist who informed him the lymph node biopsy was inconclusive for cancer but he still believes she is late stage. He thinks the primary tumor is in the bronchial tube and the spot on the periphery is a met. No tests have confirmed this though. Shouldn't they do more testing to find out for sure if the nodes and other spot are cancerous before they definitively say she's not a surgery candidate and a late stage. Am I just reaching for false hope? The pulmonologist also hinted to my Dad that he wasn't positive it was primary lung but could be from somewhere else although nothing showed up on the PET scan. I'm very confused and her oncologist has not been any help since he hasn't even called my mom back. It amazes me that my Dad could find out more information b/c he's a Dr. than the patient herself. So much for HIPPA. Thank God for him though. I can't imagine what others go through that don't have that family contact. My mom did finally talk to her oncologist's nurse yesterday and she is working on getting mom a referral to MD Anderson so hopefully that will come through next week. These last 7 weeks have been a nightmare but I have to say this web site has really helped. Any insight would be helpful. Thank you.
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