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New here, and terrified....


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Hi there, my name is Linda.

I just want to introduce myself...but my world is spinning, so please forgive me if I don't make complete sense.

I am 30 years old, married 11.5 years to Rudy, and am the proud Mother of a ten year old son and six year old daughter. I am very close to my own Mom, and so are my children. We have a very close family.

About two weeks ago, my Mom had a chest x-ray come back with a possible spot in her left lung. She was then sent for a CT scan last Wednesday. In about two hours I am taking her to get the results of that CT scan, and I am so scared, I don't know what to feel. My Mom is 64 years old, and has been a smoker for 50 years. Her brother died of lung cancer several years ago.

I am not ready to enter the world of cancer...I'm so scared. I am trying to be strong and will do whatever I need to do to support her. I just feel like a lost little girl at the moment...

I will have much more to write...but right now, I need to get going so we can get this appointment over with.

Thanks so much for listening,

Linda

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Hello Linda and welcome

I am so sorry about the stress you have right now. Please try and relax (much easier said than done I know) until you get some more information. Has anyone told you or your Mom that she HAS lung cancer? A mysterious spot can turn out to be many, many different things and I am hoping and praying that this is the case for you.

Please let us know when you find out more information and in the meantime, know that we will be here for you.

Warmly

Christine

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Linda,

I'm glad you found us, though I am sorry for the circumstances. IF this turns out to be LC, remember that there is a lot of hope in that diagnosis. Read through the Survivor stories...click on Good News. There is good news along this journey. There is life within cancer. You will find so many people here who are LIVING WITH cancer, not at all just waiting to die from it.

Please update us when you know more. Until then I will be praying for you and your mom.

Kelly

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Linda,

I am so sorry about the stress you all have. Cancer is unfair in that it does that...changes our lives.

Please know you have come to a wonderful place, filled with hope, peace, and information. Keep us in the loop, and may you know God's healing grace.

Blessings,

Jen

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Hi, Linda, welcome to the group. Even today your mom probably won't get a definitive diagnosis -- the CT scan results may be "suspicious" for cancer, but usually some type of biopsy needs to be done before the specific type of cancer (if it is actually cancer) can be determined and a treatment plan developed. Other types of scans would probably be scheduled as well. So let us know what they tell you, and those of us who have been down a similar road as patients or family members or loved ones or friends will be here to help you along the way. Best wishes and Aloha,

Ned

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Hi Linda,

Sorry to hear about your situation. I know how frightened you are! I was standing in your shoes a few weeks ago when Hank, my boyfriend was newly diagnosed.

Please believe that you will soon feel much better and much more in control once your Mom's treatment plan begins. I was just totally freaked out a few weeks ago, but now things are underway in treating Hank, and I feel relieved and hopeful that things are going to go well for him.

Know that you are not alone in this. You have come to the right place. There are so many WONDERFUL survivors here ready and willing to help you, as they did me.

All the best,

Gail

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Linda: Like Gail said, the first few weeks are the most difficult. Once you get a diagnosis (and it could be something much more benign than cancer) and a plan laid out if it is something to be treated, you settle in a little better. That's not to say most of us haven't done the roller coaster a few times. But you don't have enough information yet, so take some deep breaths, plunge in with your mom and let us all know how it turns out.

Judy in Key West.

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Linda-

Welcome to the site altho I am sorry that you need to be here. Please know that this part of the journey is the scariest - for you, your mom and the rest of your family. Not knowing can be far worse than knowing what you are facing. IF it does turn out to be cancer, a treatment plan will be put in place and then and only then can you really start the fight against this monster. We have all been there, and we will all help you and your mom in whatever way we can.

Please keep us posted. And, if you need to cry, you can come here and we will let you cry and vent.

Hugs - Patti B.

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Thank you so much for welcoming me with such open arms...it really helps.

The news was bad....to me it looks very bad, but I don't know the lingo very well yet, so I am going to tell you what the doctor said, and I'm going to type out the CT report, so maybe you can help me decipher all these words I don't understand...is that OK?

The doctor told us that of course he can't say with 100%certainty, but it is 99% positive that she does have cancer, in both lungs. He will be setting her up with a lung specialist ASAP for biopsy...etc..

Here comes the report part:

Exam: CT CHEST, LIVER C+8695

Multiplanar contrast enhanced images of the chest and liver were performed.

Within the left hilum nestled in the confluence of the superior and inferior pulmonary vein there is a lobulated soft tissue mass measuring 4x3 centimeters compatible with lymphadenopathy. No other mediastinal lymph nodes are present. In the periphery of the left upper lobe, there is a 3mm spiculated pulmonary mass which may represent the site of primary lung tumor.

In the azygo-esophageal recess of the right lung, centered on the major fissure, there is a 1cm. pulmonary mass showing spiculated outer borders with pleural tags attached to the mediastinum and paraspinal soft tissues likely representing a contralateral synchronous lung primary. No right hilar lymphadenopathy is present however.

The lungs are markedly overinflated showing changes of advanced centrilobular emphysema. Multiple small pulmonary nodules each measuring no more than 2-3mm are scattered within the anterior aspect of the right middle lobe and periphery of the left lower lobe.

Images of the liver show two low density foci in segment 8 likely both representing tiny hepatic cysts. The adrenal glands are normal.

IMPRESSION: Left hilar mass undoubtedly represents malignant lymphadenopathy. Two possibly primary lung carcinomas are identified, one in the right azygo-esophageal recess measuring 1cm and the other in theperiphery of the left upper lobe measuring 3mm. Given the severe underlying centrilobular emphysema, percutaneous biopsy of either of these lesions is not advised. Transbronchial biopsy of the left hilar lymphadenopathy is likely the most reasonable method to obtain histology.

So there it is, word for word. I have a slight understanding...but very limited, so any help understanding this will be so very welcome.

The doctor also said that he had not seen tumors/masses in both lungs before?? I may have understood that part wrong.

I asked him to give me a copy of this report so that I could post it here, I'm glad I did.

I wish we could skip this part. I feel a bit like a zombie.

I'm kind of numb, but could blow any second at the same time.

I have cried many times today. But at the moment, I'm grateful that at least she doesn't feel sick. Her greatest pain at the moment is arthritis. And she has lost 20 pounds in the past year for no reason.

Sorry for writing such a book, but I though if anyone would understand...it would be you guys.

Thanks again for such a warm welcome. I guess I'll be around here a LOT!

:cry:

Linda

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One thing I can tell you Linda is None of Us is qaulified to read a CT report. We may THINK we are qaulified because we live this journey every day, but we're not!! :wink: We've all learned over the years not to even try. I would HATE to give misguided information on something SO IMPORTANT and something that a PROFESSIONAL RADIOLOGIST needs to read. :wink:

I will suggest going over to www.Onctalk.org and see what Dr. West says about the CT scan. He's our professional. :wink:

Wishing you and your family good luck on this journey.

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I have lost 35 in the last 4 months and I don't have any cancer. 20 in a year is not that bad. HAng in there breathe in breathe out!!!

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(((Linda))))

I am so sorry that your mom's scan was not better. Cancer just sucks - I hate it!!

Most of the technial medical jargon I will leave for others to decipher - but I did want to make two points. You said you may have misunderstood but you thought your doc said he had never seen tumors in both lungs before. Well, I do and I have been hanging around feeling really good for 19 months now!!! And I, too, lost a ton of weight prior to my diagnosis and as a today (at chemo) have gained 26 pounds SINCE I began chemo!!! Also, I have had some little cysts on my liver that are not cancer related.

I wish there was more I could do or say for you. Please know that lung cancer is not always a death sentence, Read others profiles here - many of us have been around for some time, some for years and doing great!!

You and your mom will be in my prayers. PM me if you need to talk - I will be there for you.

Hugs - Patti B.

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I think you would have to do some research on this, but from what I've seen posted here, there are sometimes people who develop more than one primary cancer, and sometimes of different types. It is unusual, but not unheard of. Again, this is just my personal anecdotal observation.

The best thing to do is to focus on the next step, whatever that may be. Do not place a lot of emphasis on prognosis or the estimate of "how much time is there." In fact, you might find the doctor reluctant to give any weight to the "time left" thing, because they are simply unable to predict that with accuracy.

A second opinion never hurts.

You've been kicked in the gut. Allow yourself to do what you need to do to deal with it...cry, scream, or just vent. We're here, and we understand it all.

Hugs,

Karen

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As others have said, if you dr said he hadn't seen tumors in both lungs, then he hasn't seen many lung cancers as there are a lot of folks here that can tell you they have had tumors in both lungs also. Sometimes tumors of different histology, so two primary tumors. Sometimes spread of one tumor from one lung to another.

Try and hang in there, and wait until you talk to the Dr. and let them explain what it all means to you. I love that most Drs freely share these reports, but I know many worry about it as they feel it gives undue worry to the patient and family as you will read so many things that sound bad but in reality are things you shouldn't worry much about. From the sound of the scan, the liver and adrenals are fine, and those are 2 of the 4 areas lung cancer likes to metastasize to. So that is some good news! Try and find the good news, even if it is in there with some bad.

We all know how you feel, none of us are ready for this world. And we get tossed in the deep end with no lessons. But folks here will be of great help to you, and that will let you be of great help to your mother. Take care of yourself!! Prayers for you and your mum.

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I am so sorry you had to find us, but I am glad you did. As yo can see there are some really helpful caring wonderful people here. You are at a really scary time in this journey. We have all been there and we understand. Read through our stories - so many of us are doing so well. Ask lots of questions of your doctor and us. Take a breath - My prayers are with you.

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Thanks for the replies everyone, I truly appreciate the support :)

Connie- I tried onctalk.org and it didn't come up. I would very much like to run that report by Dr. West.

Randy- Your post made me laugh, which is a miracle today! I've lost 25 pounds since January second, but I'm doing it on purpose. Mom wasn't trying...just shriveling..

I am trying very hard to be positive, and patient. I guess this cancer thing just takes a little getting used to, eh?

I will spend some time looking at your positive stories, to get my spirits back up a little.

(((hugs)))

Linda

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Hi Linda...I'm a little late in posting here, but I was sitting where you are a little over a year ago. It's so very scary and overwhelming...So much you don't know and have no idea what to ask or even where to start.

So....first, please let me say that I'm so sorry to hear about your mom but PLEASE don't give up hope! READ the stories here and you'll find many people with similar histories to your moms. Many people here are doing well with treatment years after diagnosis. My mom continues to do well more than a year after she was told she had LC.

If at all possible, make sure someone goes to all initial appointments with your mom. It's so important to have a second (or third) set of ears. It's amazing how much information doesn't get picked up.

When the Docs come up with a plan, please share it with us, there will certainly be someone here that has been on the same treatment and they can let you know how they did with it.

Ask us EVERYTHING! If we can't help, Onc talk is definitely a wonderful source.

I wish you, your mom, and family the best.

Shelley

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Hi again, Linda:

I usually check OncTalk before logging in here, and I saw Dr. West's response to your request for his thoughts on your mom's CT scan. I recall a few weeks ago when someone had a similar request, and he provided some general information but expressed the concern that he was getting very close to the line on "providing medical advice" or replacing "the medical advice of your doctor or health care professional" (bottom banner of the OncTalk opening page). Add to that the fact that a radiologist's scan report has limited value except in combination with other information including direct examination of the patient, and I think Dr. West felt he simply had to stop doing this sort of thing. Knowing him as many of us do, it was clearly painful for him to have to turn you down, and I know he's serious when he says he owes you one or several.

After you've talked to your mom's doctor about the report, and possibly after a test such as the recommended transbronchial biopsy has been done, I'm sure he'd appreciate the opportunity to answer any questions that can be framed so that they apply to more than one person. Example: "In a patient such as my mom with evidence of advanced centrilobular emphysema, are there any special considerations when it comes to choosing a course of treatment?" Please realize that's just an example off the top of my head and I really don't know anything about emphysema. Aloha,

Ned

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Thank you all SO much for your replies :)

I hope to be as wise as you are...and soon!

I completely understand about the CT scan stuff..I'm sorry for putting that on you guys. There's just so many words I don't know the meaning to yet!

Ned, that's funny, you saw the Dr. West reply before I did. I can understand his position though. I will try to be more hypothetical in the future :D

On another note, Mom has an appointment with the lung specialist in Nanaimo on Monday morning. He is the one who will do her biopsy, I would guess. Do you think her biopsy will happen then and there? Or is it normal to have a consult first, and then set up the biopsy appt.?

Thanks so much once again....and I truly look forward to getting to know all of you. I hope I can have enough knowledge to offer support to others soon.

Linda

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Hi Linda

Let me start by saying how sorry I am that you have to be here.

When my Dad was diagnosed he went to the Lung Dr. who referred him for the biopsy.....the biopsy was done at the hospital a few days later - then we waited another week for those results.

The waiting and the unknown is the scariest part.

Staying positive is the most important and hardest thing to do. I have found that pounding the steering wheel while driving does wonders :-) I have to stay strong not only for my Dad but for my yound children....a good cry in the shower works great too....

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Hi Linda,

Welcome to this wonderful support community. I to started out the way you are -very scared and anxious not knowing what is going on. But through the help of this community I feel supported and understood in ways that I can't get from others not going through the same situations. Your story sounds similar to mine - I am very close to my mother and have always been. Take one day at a time. Write things down when the Docs speak b/c like u said your mind is spinning and this is all new vocabulary you are hearing if never been through it before. I wrote even the smallest things down and was so glad I did b/c my mom would ask me later what the docs said b/c her mind was tuning out at times. I found I felt like I was parenting my mom now b/c she needed my strength for once in our lives it was always her parenting me and giving me strength but now its our turn to do the same for them. I always also tried searching for wonderful words of wisdom for my mom when she was down and found out there aren't any except for I love you and you will get through this and just listening to her. Keep the faith and know that you are in our prayers.

Marci

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