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Started out as 3a 5 1/2 years ago. Had ULL and 2 rounds of chemo - couldn’t tolerate cisplatin and 33 rounds of radiation.  NED ever since.  Until December. Found a very small pleural effusion and a few tiny nodules.  Effusion malignant.   NOw stage 4 after doc declared me cured.   Any positive stories out there I can hang on to regarding pleural effusion?  Anything to help me get through round 2!

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Hi so sorry to hear your bad news I was diagnosed last August and given curative intent treatment of cisplatin but unfortunately last week I had a seizure and they found 2 small brain mets I'm waiting on gamma knife radiosurgery and have now been restaged at 4 the worry is unbearable I know what you are feeling,I keep looking for the survivors stories but unfortunately Google gives much worse outcomes I wish I could stop and would encourage you to not start if possible goodluck with everything take care 

Justin 

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Hi Disney4,

Welcome to our forum and sorry that you need to be here.  I myself had a LRL almost three years ago and haven't had additional treatment yet, so I can't tell you about plural effusion from experience.  I'm sure others will soon join  this post and be able to share what happened with them.  But, I can tell you that we have had people here who were diagnosed at Stage 3 and Stage 4 and many of them are doing well.  I must say that I find a doctor's use of the word "Cured" curious considering that LC is one of the most recurrent forms of the disease.  Here is a writing about "Defining Treatment Outcomes" and it can be found here

The effusion itself can be treated and controlled (including the nodules), but I'm wondering where else they may have found the cancer...was it lymph nodes, the lung itself or at another location.  Have they moved far enough along in the testing to determine all nodule or tumor locations?  I guess what I'm saying is they really need to understand how many tumor(s), the type of tumors, what other areas of the body are involved and if any genetic mutations exist which can affect the treatment that will be recommended.  Has any of that been shared with you or are you still in the process of diagnosis?  I'm trying to determine just where you are in the process.  

Treatment has progressed significantly in the last 5 1/2 years so, based on the final diagnosis, there is a good chance for treatments that weren't available the last go round.  I look forward to hearing more and am sure that you'll be hearing from others as well.  I am posting one example of someone with Stage 4 who recently posted regarding Justin (whose response to you is above this one) Lisa's story can be found on this page.

Lou

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I'm sorry to hear about the cancer returning but it does seem like the recurrence is small. Hopefully they can get it back under control. Did you have immunotherapy as part of your original treatment? 

Also what is ULL? Sorry I'm not familiar with all the terms. 

Stay positive. There are so many treatment options available including immunotherapy and targeted therapy. Please keep us updated. 

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Greetings! The most positive story I can offer is the guy in my local support group who has been living as a stage 4 survivor for more than 12 years. He’s quite amazing. 

I’d advise you to not look for comfort in statistics about longevity— the lung cancer research field is changing too quickly for us to put much stock in any numbers as predictive. 

You may be feeling a lot of different things in the face of your “cure” having been revoked. It may be helpful to find a counselor to help you make sense of your experiences and feelings. It’s helped me. 

Hang in. You can do this.

Karen

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Hi Disney and welcome - 

Sorry to hear that you cancer has returned. That's the think about lung cancer - it does what it wants when it wants. I was diagnosed as stage IV in 2016 (lymph node involvement and mets to the thyroid), a recurrence in 2017 and another recurrence in 2018. I also was diagnosed with a separate thyroid cancer in 2016. That said, I'm here and NED. I (mostly) survived cisplatin, alimta, carboplatin, taxol, radiation and SBRT.

It's been a long road, and that little black cloud of "will it come back" will always follow me around. However, I hang my hat on the fact that I'm here. I know a lot of people want to look at statistics and prognosis but I couldn't do it. So much has changed just since I was diagnosed - so many options. We're living longer thanks to those options. 

Please keep us posted on your progress. 

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