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Scared....


SamGirl50

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Hello everyone!
I am so scared and I feel so alone. I have always been a sick child. I was diagnosed at age 11 with juvenile rheumatoid arthritis. In and out of hospitals. Went into RA remission at age 16. I have been living a normal life since. I am now 50 years old and have smoked since the age of about 16. I did quit April 12, 2013. It was the best and the hardest decision I ever made. Right after I quit I noticed shortness of breath so found myself and pulmonologist and long story short, Emphysema.  Things have been good since. Then my mother was diagnosed with stage 4 nsclc with pericadial effusion. Again, long story short, she passed July 2019. It was really hard as we were really close. Anyway, in May of this year, I noticed my breathing was off and I had slight side pain when I breathed in and found myself at the ER where they said I had a really high white cell count and did a CT scan and said pneumonia. They also advised of 2 nodules in upper right lobe to watch. Last week had a repeat CT scan and they were still there and had grown so Friday I had a PET scan. And the results: 

A cluster of solid nodular foci are appreciated in the inferior right upper lobe at transaxial slice positions -270.9 through -283.98 inclusive demonstrating maximum SUV measurements ranging up to 3.8. Given the quantitative 18-FDG accumulation associated with this cluster, both inflammatory as well as neoplastic/metastatic etiologies should be considered. As such, close CT surveillance in 3-6 months is indicated as per revised Fleischner Society criteria in order to establish temporal stability or resolution. Also, within the superior aspect of the right middle lobe at transaxial slice position -293.79 there is a noncalcified nodule measuring 0.8 x 0.6 cm in size of maximum SUV 1.3.

Mean SUV of the hepatic parenchyma is 3.1 while mean SUV of the mediastinal blood pool is 2.2.

An enlarged right axillary lymph node at transaxial slice position -221.85 measures 1.3 x 0.9 cm in size of maximum SUV 2.8 along with smaller bilateral axillary lymph nodes, none of which measures greater than 1.0 cm in size. These may represent reactive adenopathy. Metastatic adenopathy is less likely.

 

I'm not exactly sure what it all means but my cardiologist called me yesterday and told me cancer and I have to have a biopsy. So there're suppose to be calling me to schedule one. I am so scared and nervous. I cannot stop crying. It's just me and my 16 old daughter. Just the thought of not being here for her is killing me. I have no motivation to get up or even eat. Just the thought of eating makes me nauseous. I am so sorry for the long post. This is the only place I felt I could turn.

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Hi, Sam, and welcome.

First off, your cardiologist is not a cancer expert. The radiologist who read your PET CT scan believes there's a good chance your nodules and the related uptake are inflammatory. That's why there's a recommendation to look at it again in a few months. 

I'd really suggest you connect with a pulmonologist. They are the experts at evaluating nodules. The majority of nodules people have are not, in fact, cancer. Some are, which is why you should take them seriously.

The good news is that if these do turn out to be cancer, they are an early "catch" and may be very easily treated with surgery. 

I know it's scary, but don't get ahead of yourself. Find a pulmonologist and see what they recommend.

 

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Hi SamGirl50: Welcome to our blog. First of all congratulation for stopping smoking. That was the first step to healthier living.

Second it is very normal to be scared.  We all had the same feelings before and after diagnoses. However rest assured that lung cancer no longer means the death penalty. There are many survivors on this board that you will meet and interact with. First things first. Let's wait for the biopsy result to make sure you have lung cancer, what type of lung cancer and what stage. I am sure your doctor will also want you to have a PT scan and blood work. Please spend time educating yourself on lung cancer. I am sure other posters will give you links to some reading material.  Rest assure that we will be here to answer any questions you might have so don't hesitate to ask. 

 

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@LexieCat Let me apologize first off. It was not my cardiologist who called me, it was my pulmonologist. My brain/mind has been on halt. I want to thank you for your kind words. You also, @GaryG. This is so hard for me. Just knowing that I can come here and talk helps so much. Thank you both for the advice and kind words!!!!

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OK, then the biopsy is the way to go, assuming the nodules are large enough and in a location where they can get a good sample. 

My nodule was too small to biopsy, so they went ahead and scheduled surgery and when it was removed, it was cancer. I needed no other followup treatment. I had scans for three years and then I developed what doctors think may be an unrelated second cancer, now Stage IV. Starting chemo next week.

But I'm glad you found us and you will find a lot of collective experience, knowledge, and support here. 

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I'm so sorry you are going through this.  I wanted to share Lung Cancer 101 with you which may answer some questions or give you questions to ask your doctor.

https://lungevity.org/for-patients-caregivers/lung-cancer-101

 

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SamGirl50

Welcome to the forum.  Sorry you have to be here, but glad you found us.  You'll need to continue your testing in order to either confirm or rule out cancer.  In my case the PET Scan was inconclusive and the nodule was so small that even a CT Guided Biopsy wasn't possible.  So I had to have surgery and the tumor was confirmed while I was on the operating room table.  In your case it may be very different, but regardless of the journey, you need solid answers so you can be confident that you understand the problem and also that you can then work on whatever plan is necessary to ensure your health.  Stay strong and keep in touch. All of us here have gone through the "diagnostic phase" and understand how scary and confusing it can be.  Ask any questions you have here and someone will be able to share their experience as a response.

Lou

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Thank you so much for your reply @LouT. Just being able to talk with someone is such a big help. I'm trying to keep my head up and convince myself that this is not a death sentence.  I'm waiting for the radiology facility to call me to set up an appointment for a biopsy. I'm ready to get this started. I have a 16 yr old who needs me as I am all she has. I will definitely keep in touch as the kindness of everyone here is very much appreciated.

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SamGirl50, the first thing my primary doctor told me when she diagnosed lung cancer was that it's not a death sentence anymore.  Once you get your biopsy and biomarker testing, your team will create a treatment plan for you. We've all been through the fear and uncertainty, so we understand how you feel. 

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SamGirl50

I had my lobectomy in the first week of May 2019 and am here NED (No Evidence of Disease) nearly 1 1/2 years later.  There are treatments available more than ever before.  Stay strong and keep us updated so we can share our experiences with you.

Lou

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SamGirl50,  We are happy you found our group but sad because you have to be here, as said previously.  I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets.  The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it."  During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis.  Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now.  It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another!  As Lou stated, stay strong and keep us posted.  You take care now, Susan

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Hello all,

I finally have an appointment for my biopsy. It's scheduled for Monday, the 28th. So nervous and scared. How am I going to keep myself calm until then. I'm already in a panic and can't seem to bring myself to continue my normal routine. My mind and thoughts are on overload with tears. I feel that that is so long away.

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Hi, Sam,

Believe it or not, a two-week wait for a biopsy isn't considered inordinate. The waiting for tests, results, etc., is the most stressful part of this whole deal. Once you have a treatment plan in place, a lot of the anxiety will go down--it's common for all of us. 

Are you having a bronchoscopy? I had one about a month ago and it wasn't so bad. A sore throat for a couple of days from the tube, and that was it. 

Hang in there. This deal is a marathon, not a sprint and you don't need to be burning yourself out. Just focus on the next step.

One thing I did when I was waiting for surgery and during the time since my biopsy was to take care of some housecleaning--literal and figurative--so I wouldn't have to deal with it if I felt lousy later on. I took care of some legal stuff (having medical and general powers of attorney drafted), did some household cleaning and organizing. It made for a good distraction and it gave me some sense of controlling what I could control. You'll probably need someone to drive you home after the biopsy--you'll be getting anesthesia and it won't be safe to drive that day.

 

 

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Hello @LexieCat,

Thanks for responding. I'm having a needle biopsy. I'm actually not scared about that. That, I'm okay with. My brother is going to take me. I am so ready to know so that I can move on to the next step. I do have xanax for my nerves. I may have to start taking them. I'm still hoping and praying for a miracle.

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You'll be OK, promise. We were all scared (heck, I start chemo tomorrow and *I'VE* got a certain amount of trepidation) but you do learn to manage it for the most part. No matter what, it looks like this was caught relatively early--you might need nothing more than surgery (which actually isn't all that bad if you can have VATS--laparascopic surgery). 

Just keep reminding yourself that so far there's nothing to suggest your situation--even if it is cancerous--is especially dire. 

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Samgirl50,

Hi, and welcome to this awesome forum.  I’m not on here a lot, but everyone’s words of encouragement mean so much to me.  I understand your fear.  I’m exactly like you with this fear.  I couldn’t eat, all I did was cry.  I didn’t think I could find the strength to move on, but you will!  I was diagnosed with Small Cell (sclc) in July.  Of course I read all about it and that is the scariest one.  So I was and still am freaked out.  I was so lucky that they caught it early, stage 1 and 1 cm.  I had my left upper lung removed on August 31st.  I see my oncologist to see what’s next on Friday. The people on here will answer your questions and put you at ease, they are wonderful!! We are all here for you, you are not alone.  Praying for great news for you!!

Sheryl

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