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Mom beginning journey with NSCLC


mmason

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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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wow, I am so sorry about all of this that you and your mom are dealing with. I am very glad you found this board though as you will find some of the most wonderful and helpful people here that can help explain things and also offer you the support that you need.

Please keep us posted on things and ask whatever questions you have. Although my knowledge about what you are describing is limited at best, please know that I, like everyone else here am willing to listen whenever you need an ear...

Hugs and prayers,

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Oh my gosh!!!! I actually think your docs and your situation actually have one-upped mine. I dealt with total incompetence and lack of compassion. I just wonder where on earth you are to have this happen to you!!!!!

YES, YES, YES........................ to second opinion.................third..........even fourth. If you read my profile, I actually did have 4 opinions. Please do not leave one stone unturned. Make sure you have all scans and reports in YOUR possession. Always ask for a copy for YOU whenever you have something done. Research all you can and be informed. Do NOT let the medical 'professionals' put you on the defensive! They do not know everything. Sometimes I began to think they knew very little indeed. If you don't like what you hear or the way you are treated ~ MOVE ON!

There are many here to help and support you. It is a bumpy ride you are now signed on for, so hang on.......gotta be tough! Make sure you keep us up to date so we can better asist you!

Kasey

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Hoping you guys have more answers now.

A second (third, or fourth) opinion is certainly a good idea considering they don't seem to be certain about anything and the dx. is based on a doctors educated "guess".

If your mom does have LC, late-stage or not, there are options, there is hope, there are survivors right here.

Give us an update on what you learn. You both are in my prayers.

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I'm sorry to hear about your mom's diagnosis, and what seems to be a lack of compassion from her present oncologist. I definitely think they should be doing more testing to determine if the nodes and other spots are/aren't cancerous! Hopefully MD Anderson will be able to give you a clearer picture of what you mom is dealing with, and better direction to how her cancer can be treated.

In any event, do not give up HOPE...other people have beaten this monster...and so can your mom!!

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Welcome: I am sorry your mom has to deal with the cancer thing again. It is good your mom is going to MD Anderson. I hope they get the situation clearly figured out and get a treatment plan going. Your mom fought through breast cancer and she will make it through this one too. I think the people at MD Anderson will be much more forthcoming in communication and will prsent an array of options. Good luck to you and your mom.

Don M

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