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Just Diagnosed-Scared to Death


Barb1260

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After going to a pulmonoligist because I couldn't shake a small cough after being sick, a 7.5 cm mass was found on my lung.  Had CT, Bronchoscopy.  Biopsy revealed adenocarcinoma and 2 lymph nodes involved.  Follow up yesterday with pulmonologist, he called Oncologist to get me in yesterday or today, they are sending me for a CT of my head and a full body PET.  Right now I am waiting for the imaging place to call with schedule, and the Oncologist office to call me with an appt.  What I thought was going to be all scheduled yesterday is now a waiting game and I'm losing my mind waiting.  I lost my twin sister to this disease less than 2 years ago, I know none of this is good and is it worth fighting?

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Hi, Barb, and welcome.  First, I'm sorry for your diagnosis and for the loss of your sister.  Even in the two years since she passed, though, new advances have been made in fighting lung cancer.  Because you had a genetic twin with the disease, that might be helpful to the oncologists in planning your treatment.  They can find out what was and was not effective with your sister.  

I think if I were in your situation, I'd want to be treated, if possible, at a major cancer institute.  And that isn't because your situation is necessarily especially dire, but rather because there might be information from your sister's treatment that is best analyzed by top experts.

Yeah, the waiting for tests and results and treatments and scheduling is one of the most frustrating things about this whole deal.  Hang in there.  It takes time to get the information necessary to determine the appropriate treatment.  

Glad you found us--there is a ton of knowledge, experience, and support available here.

ETA: I'm assuming that your sister was an identical twin, and you didn't tell us that.  Even if she was a fraternal twin, though, family genetics can be important.

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Thank you for responding Lexie.  Yes she was identical.  I feel like every minute wasted getting this scheduled is another minute wasted.  I grew up in NJ and left 3 years ago, 

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Hi, Barb.

Welcome to the forum no one ever thought they'd ever have any reason/relevance to join.  I don't think anyone ever gets the diagnosis of lung cancer and not be shocked, I'm sure despite your twin's passing, you were too.  This is the right place to get advice, ideas, support and encouragement from a lot of folks who have been on this journey for quite a while. I've found the waiting is the worst part (worse than surgery!) and the waiting does not get any easier, grrrr.

I believe life is worth fighting for with everything you have and I hope you give it a chance.  Let us know if any questions or how we can support you, or feel free to vent (cuz we get it!).

MB

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Thanks MB, I'm sure once this whole process gets going I'll feel more in control.  Read your story-thought the crying all the time was just me.  I'm normally a fighter, I'll get back there when I finally get over the shock.  

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One thing to keep in mind--the time needed for testing and consultation is NOT time wasted.  It's critically important that the right treatment protocol be identified--because the wrong treatment IS a waste of time, and it might interfere with the ability to pursue the right treatment promptly.

You WILL feel better once this part is over and they can get going with your treatment.  

 

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Hi, Barb. I'm glad you found us. Your onset is similar to mine. Had a cough I couldn't shake and a scan revealed a big mass in my lung. But a bronchoscopy did not indicate cancer. Had upper left lobe removed in February 2016 and was diagnosed with adenocarcinoma. It had spread to my lymph nodes as well. Subsequent scans showed it had also spread to my thyroid. I've had a couple of recurrences but I'm STILL HERE!  As Lexie mentioned, we've seen so many new options in the last couple of years. I'm sure you know this but make sure your tumor is tested for any mutations. Some mutations respond well to immunotherapy.

We all understand the waiting and the uncertainty, and especially so given your family history. Just know we're all here for you and will support you along the way. 

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Hello Barb from a fellow Jersey Girl (exit 150).  I’m so very sorry for your loss and diagnosis. I understand the despair and the waiting through appointments can be really, really hard.  

LexieCat is right in that you will begin to feel a greater sense of control once the treatment plan gets underway.   So all told it took about 2 months for my treatment plan to fall into place.  

There are advances in lung cancer treatment every month. Each of these advances are allowing us to live with cancer as a chronic condition.  It’s worth the fight.  We’re here for you. 

Michelle

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Thank you all for the words of encouragement.  I know a lot has changed since my sister passed.  I'm just one of those people who cannot sit still and do nothing.  Glad I found this organization.  I'm feeling better mentally already, not feeling so alone and to see survivors like you gives me hope.  Michelle-exit 120. 

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Hi Barb and welcome,  I don't have much to add to what the others said. Crying, not crying,  frustration, anxiety, numbed feelings--all those are in the normal range of reactions to this diagnosis. You're not alone. Also, treatment is defineitely worth it, even if it can be difficult at times. My lung cancer was found very early, so all I needed was surgery. Hovever, I had a prior non-lung cancer, a rare and aggressive type , stage 3, with lymph nodes involved. My treatment was grueling.But here I am today, almost 8 years later with no evidence of disease and a good quality of life. So, hang in there!

Bridget O

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Glad you found this site, Barb... I'm also sorry about your dx and the loss of your sister.  You will find a lot of support and information from others on this site.  They have been the best source of support and info that I have found since getting my own cancer dx this past Fall.  Please don't give up.  There are so many shining examples here on this site that illustrate how life can go on and you can survive.

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For me, I worked on focusing on what I could learn and/or do about my situation.  I did a lot of reading and research--working hard to hit that sweet spot between learning enough to know what to expect and be able to ask the right questions and freaking myself out by reading up on the scarier, less likely possibilities.  For a lot of things, I'd glance at an article and say, "OK, I know there's info on this if it turns out I need it, but I don't need to think about it until I NEED to think about it."  

I worked on developing a flexible mindset, rather than insisting in my head that everything would happen in a certain way.  There are often delays and changes in plan.  Stay flexible and you can learn to roll with what happens, however things unfold.  Not to say you shouldn't advocate for yourself when it's called for, but you can always check in with us here about whether something seems "not right" about what's happening.

And finally, I took a lot of comfort from the other members here, who are living great lives even in the face of advanced cancer.  

And try to be patient with yourself.  You're still processing the fact that you've been diagnosed.  It will all become easier to deal with over time.  We talk a lot here about the "new normal."  As things become more routine you'll have a better idea what to expect, which reduces all that fear of the unknown.

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I sooo agree with what Lexie wrote.

Today is my 1 year anniversay of the diagnosis.  I still remember the moment just like it happened an hour ago.  12/20/17 11am, the pulmonologist walked in, sat down, looked at me and said "It's bad. It's cancer."  Since then, I've learned to tell myself (thanks to a chemo nurse), 'Right now, at this moment, I am okay.'  This may not be your way of coping/calming yourself down, but hopefully soon, you'll find your own way to face and live your "new normal'. 

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Barb,

We are all afraid.  Lung cancer is known for its recurrences so even with nearly 15 years of survival, I still dread my semi-annual oncology appointments.  One cannot deal with fear. There is no bargain to be struck. One might accept fear and press on despite it. As Lexie suggests, learning about our disease can be effective. Knowledge can minimize uncertainty, one of fear’s companions. 

My experience tells me it is best faced, up front and early.  You are not dealing with a walk in the park and there are unrecoverable concequences.  You can foment about consequences or live inspite of them. Despite my fear, I remain in charge about how I’ll feel about everything in my life.  So I choose to live and ignore the mayhem.  This was a hard learn for me and I offer it as a lesson learned to help you cope.  When walking into the teeth of a storm, one persists by a determined step and after many steps the storm ends.  Just keep taking steps.

Stay the course.

Tom

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Barb,

I agree with Tom. Knowledge is power and will help when you need to make decisions. But throughout the journey, you keep moving forward, one day at a time. Although you can't control the disease, you can control how you choose to live with it. It's not an easy journey and sometimes you may end up taking a few steps backward before you can move forward, but with persistence and inner strength, you will progress. I've said this before but try to bring someone with you to your appointments that can take notes and ask questions. It's very difficult to manage all the information at once, and just having that other person there really helps.

Sending you tons of positive energy and support!!

 

Ro

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Hi Barb- 

You’ve got some great advice here & we’ve all been there.  I initially did a lot of research & got overwhelmed pretty quickly.  For me I had to find something to be hopeful about.  

One of the doctor’s suggested reading  “Love, Medicine & Miracles” by Bernie Seigel MD.  In this book was inspiring stories about survivors.  

For me this book was a game changer.  

Jersey Hugs, 

Michelle

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Hi Barb.  I am sorry to hear about your diagnosis and the loss of your sister.  I've lost family to this disease.  The others who have mentioned it are correct in that there have been a lot of advances in genetic mapping of cancer.  If they didn't do that when they did your biopsy you should look into if it's possible with the sample they took.  If you have access to your sister's medical records that can also be very helpful.  They sometimes keep biopsy samples for many years.  Reading through my dad's recently wasn't easy, but it can go a long way towards finding the best treatment for you.  The waiting is really difficult.  The doctors never seem to have the level of urgency that you feel they should.  You do have to trust that they are going through the necessary steps in the best way they can and if urgency is required they will let you know.  I'm also Jersey born (Morristown), I've moved away but still have lots of family there.  Jersey Strong!    

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Hi all. Thanks for all the msgs. I had to stay off the computer and give my brain a break. Didn’t really get much info at the oncologist as the PET isn’t until the day after Xmas. She did say it’s at least stage 3-we’ll find out more with the results on Thursday. So here I wait knowing I can’t have surgery and am scared to death of chemo. I’m just hoping there are no mets. 

 

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Hi Barb-

Did they say anything about bio marker testing? There could be targeted/immunotherapy available.   Mets can be managed- I had some too & today I feel better than I have in months thanks to targeted treatment.  

Smart idea to get off the computer & give yourself a break.  I got some great advice here to have cancer free day.  Helped me.  

I’ll be with you on be 26th- CT for me. 

Stay Jersey Strong- 

Michelle

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Hey Michelle-no mention yet about bio marker testing but it’s on my list of questions for Thursday  I was overwhelmed at the oncologist visit the other day, just too much mentally for 2 weeks time.  I have nobody to go with me so I’m preparing better for this visit.  I’m wondering if I must get a 2nd opinion if I don’t like the options I’m given.  The doc came highly recommended and the cancer center is supposed to be one of the best in GA.  I’m having people tell me go back to NJ, I’ll get better treatment.  Not an option at this point. How do you sell a house, quit your job that your medical insurance is through?  Easy for people to give advice  Sorry for rambling-guess I’m venting.  

Be well

 

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Hey Barb, 

Totally ok and you are not rambling along.  We had a very similar experience when I was diagnosed in September. 

One thing at a time- first things first.  Focus on getting through all the diagnostic appointments- there are a lot of them.  If you're not able to have someone go with you to the onc one of the things you might consider downloading an app to allow for recording appointments so you can play them later.   My parents completely freaked when I told them about my cancer and they wanted me to come home to NJ.  (They think KS is a foreign country- where the heck is it?? But then again anything outside of Essex is a foreign country to them. 😉).  We actually thought about selling the house and moving.  I had a realtor come and do a market evaluation.  Fortunately, my financial advisor talked us out it.  It was just too stressful to even consider moving.   I'd consider saving your energy right now.  We're running a marathon to wellness and eventually you will find your pace. 

Michelle

 

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On 12/19/2018 at 9:46 AM, Barb1260 said:

After going to a pulmonoligist because I couldn't shake a small cough after being sick, a 7.5 cm mass was found on my lung.  Had CT, Bronchoscopy.  Biopsy revealed adenocarcinoma and 2 lymph nodes involved.  Follow up yesterday with pulmonologist, he called Oncologist to get me in yesterday or today, they are sending me for a CT of my head and a full body PET.  Right now I am waiting for the imaging place to call with schedule, and the Oncologist office to call me with an appt.  What I thought was going to be all scheduled yesterday is now a waiting game and I'm losing my mind waiting.  I lost my twin sister to this disease less than 2 years ago, I know none of this is good and is it worth fighting?

courage / hope / keep your spirit high surgery, may be an option wait for PET scan and lung biopsy start balanced diet/walking/contact your insurance for guidance and see right away a psychologist etc

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