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Isabelle49

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EBUS is a done deal. All went well. Slight sore throat, coughing that is minimizing a few hours after procedure. Pulmo doc patho present for ROSE of nodes sampled . 4 sampled. One located at 7R tentatively + for NSCLC. So will see when final comes in. Staff at hospital was beyond outstanding and I am an RN of 33 years and not to generous with my praise, i.e., staff needs to meet what I consider Gold Standard  before meriting praise. Will keep you posted.

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Hi Isabelle- 

So glad the procedure went well!  One step closer to a treatment plan.  Stay strong & know we are all here for you!

Michelle

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Isabelle

So glad to hear that your test went well and now you can get a clear picture of what is going on and what your next steps will be. 

Fingers crossed for a good outcome.  Keep us informed, you have a lot of folks pulling for you. 

Lou

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Just heard from pulmo doc. Positive for NSCLC, unresectable. One node involved below carina on same side as mass. Setting up onc appt, so will see what they have to say/offer. 

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Isabelle

Okay, now you know what you are going to beat, the Oncologist will be the one to help you with the plan on how to do it.  I hope the appointment will be soon.  I remember they had my appointment with the surgeon out 4 weeks and I called my Pulmologist to push it up and they managed to get it in 2 weeks...much better for me.  I only mention this in case you get a "distant appointment" as I did.

I'm sure this is a difficult time.  I think back to my diagnosis and it was crushing to me.  But, I know that once I had my plan (resection in my case) I focused on that and what I needed to get through it well and recover as quickly as possible.  I know others have had the chemo route and they will surely offer more feedback than I can, but you can be sure we'll all be here for you during your journey.

In the meantime, you'll be in my prayers.

Lou

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Hi Isabelle-

Now you know what you are dealing with, so one step closer to the treatment plan.  The onc will be doing the biomarker testing, the results do take a while to come back.  The waiting is hard. There have been more advances in lung cancer therapy in the last three years than the last 30. Once your treatment gets underway, you will gain a better sense of control, with each passing day, there will be brighter days ahead.  We’re your new family, know that we are here for you.  You’ve got the fighting spirit, hang on!

Michelle

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The confirmation you have cancer is difficult.  It took a while for it to sink in for me.  I did find some relief in finally knowing and having a plan. The advances in treatment plans is amazing.  Did they do any biomarker genetic testing?   

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Curt, the pulmonologist indicated that samples were being sent out for further testing. I would imagine it’s for biomarker testing.  Glad to have you guys to bounce thoughts off of. 

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13 hours ago, Isabelle49 said:

Just heard from pulmo doc. Positive for NSCLC, unresectable. One node involved below carina on same side as mass. Setting up onc appt, so will see what they have to say/offer. 

Isabelle49 My husband has stage III-C non small cell (inoperable) LUNG cancer as well. He is getting ready to do his second round of chemo and start radiation as well. I will be praying for you as well. Keep us all in your thoughts as you start this journey. I too, am a nurse. I never worked with cancer at all. I am retired now. My spouse is younger than I am so at least he has that going in his favor, I hope. Good luck and GOD BLESS. REMEMBER FAITH HOPE and LOVE. GOD HAS THIS.

ALMOST FORGOT: My spouse has a lot of lymph nodes involved. Hopefully radiation will destroy all of the bad ones. They are in his chest and up his neck.

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Got call to day for appointment with oncology on Monday. My only concern is I’ve looked up the oncologist and note that he is not an MD but is a DO. Anyone else seeing an oncology doctor who is a DO

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Isabelle,

DOs (Doctors of Osteopathic Medicine) and MDs all take the same state board exam to get a medical license to practice. Moreover, internal medicine and hemotology-oncology programs often have DOs and MDs side by side. So I wouldn’t worry. My general practitioner is a DO and his intervention in my treatment saved my life. 

Stay the course. 

Tom

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I did a little research on the oncologist and he has been in the field for 20 years and is very heavy into research related to neuroendocrine tumors as well as other forms of lung cancer and seems to be published quite a bit. Very much into tumor/medication sensitivity. So I may have a really lucky strike!!! Thanks all.

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Isabelle 

A Pet scan was part of my diagnostic process and it's a pretty good tool in the arsenal of nailing down the treatment plan. It's easy; an injection of radioactive sugar, a bit of a rest (90 minutes) to let it circulate and a scan. In my case it showed that, from head to groin, I had no growths other than my lung nodule. 

It's a good test to get done and can answer questions about what is going on in other parts of your body. 

Praying it will be positive for you. 

Lou

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Good to hear. Glad you had a good scan Lou. I’m hoping that since I only had one lymph node in the mediastinum that was positive that it hasn’t spread far. Can only pray. Thanks

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I am a lot younger when my father dealt with this. Both my dad and I were ex smokers for several decades. I quit 20 years ago and when my father got it he was in his early 80. I am 63 and still waiting for the thoracic surgeon to get a definitive biopsy after a negative needle biopsy and positive PET scan. 

    Having given you my background, my father chose to hold back his diagnosis from my mom and also from us. But he led his own life together with my mom. I don't know if he was in denial and kept the diagnosis from my mom or because he didn't want to upset her. But holding it back seemed to a bad idea. 

    Since our family all live in Florida using the example of the way we handle hurricanes is a good analogy. If we can track a hurricane it is best to learn of the hurricane when it is in an early stage of development along with alerting the public as soon as possible. This is because many times the hurricane never reaches hurricane stregnth and fizzles out. But if the hurricane starts to develop quickly into a major hurricane we are all prepared for it before it hits. 40 years ago we got little warning of a major hurricane and of course it made things worse because it hit with little time to work together to minimize damage.

     Same exact thing with the diagnosis. To hold back until you show signs of illness maybe from side effects of treatment it may cause more emotional distress. I think everyone in the family would be better off preparing together. In the end when you show signs of the illness it may cause more harm than good.

     However you are the one who knows your family best. So hopefully the feedback we are giving you will help you make your decision. I chose to tell my wife everything I had learned about staging and the two main types of cancer so that she could break the news to her side of the family in the best way.

    I am sorry that you have to deal with cancer thing at this time in your life. I am new to this myself and am learning more and more about this situation every day reading from here from the veterans. 

      God bless 🙏

              Irwin

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Thanks so much Irwin. One of my daughters has been through a lot in her life, including Hurricane Katrina,  but recently things are looking great. She is an RN also, and her daughter has been an RN as well for the past year. The daughter, my granddaughter is getting married in November of this year and there is much happiness and excitement. I am praying that I my problems don’t affect the happiness they are experiencing so this is a major reason for me to be holding back. Appreciated hearing from you and everyone else.

 

Ok, now this PET Scan I’m having on Monday. Scheduled for 2 pm, fasting for 6 hours before the test and I am a hypoglycemic. This should be interesting.  I normally have breakfast about 11 and must eat again by 3 or 4 or I get the shakes and very rapid heartbeat, so will see how it goes. I tried to get it scheduled earlier, but no go.

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Eeek.  I read in one of Bernie Siegel MD’s books the trick is to get up way early to get most of your food supply in before the 6hr cut off.  One of his patients got up at 4am to avoid any issues.  Could that work for you?  

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Oh boy.  Hypoglycemic, fasting then injected with glucose for the PET.  Make sure to have a good breakfast.  Make sure the Dr. knows of the hypoglycemia.  I wonder if it affects the results of a PET.  

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Michelle, that’s pretty much the plan.

Curt, they should know I have hypoglycemia if they paid attention to my history. Thinking that condition might help the PET in terms of accuracy, but that could go the other way if organs are starved of glucose. I will make sure they remember I have that condition

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On 6/12/2019 at 6:47 PM, LouT said:

Isabelle 

A Pet scan was part of my diagnostic process and it's a pretty good tool in the arsenal of nailing down the treatment plan. It's easy; an injection of radioactive sugar, a bit of a rest (90 minutes) to let it circulate and a scan. In my case it showed that, from head to groin, I had no growths other than my lung nodule. 

It's a good test to get done and can answer questions about what is going on in other parts of your body. 

Praying it will be positive for you. 

Lou

Awesome news Lou. Prayers on board. GOD bless.

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Met with the Onc after having PET scan. It seems the mass I have in the right lung has almost doubled in size in two months. Even though it has been diagnosed as NSCLC, the onc says it is very fast growing and aggressive. Not sure anything will work for it, but want me to consider seeing Radiology and consider chemo. Says quality of life with treatment will probably not be very good. Quality of life is more important to me than cure, since that doesn’t seem like a possibility. Confused since I seem to have read that NSCLC is a slower growing cancer compared to small cell. I told onc that I have had more shortness of breath and wheezing on right since EBUS, he says it’s not caused by the EBUS but caused by the tumor. Kind of strange since I had no problems in Europe traipsing on foot all over the place and up a mountain to visit an old castle, only two weeks before EBUS was done. Let’s say he had an answer to counter all of my questions and they all seemed negative. I just don’t know what to think.

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