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Recurrence


SamGirl50

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Good day everyone,

I haven't been on in a while. After my vats in Nov. 2020, I've been trying to live my life as if this whole cancer thing never happened but I should have known it wouldn't be possible. Day by day the fear and anxiety alone was/is hard to ignore. Now I'm looking at a recurrence with a lymph node involved. I'm scheduled for a bronchoscopy on the 21st for the lymph node and the new tumor is in the same lung but the LRL. Now I'm living in fear again. What does it mean if a lymph node is involved. Is there still a chance for cure/NED. They mentioned not wanting to give me surgery again but if the lymph node is negative they will do a radiation seed for the nodule but if it's positive they will do chemo. I don't know, just so confused and tired of being afraid. 

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Hi SamGirl,

Sorry to hear about your recurrence.  LC is one of the most recurrent forms of cancer so we do live with that aspect of the disease.  I had my lobectomy (LRL) in May of 2019 and through this past August I have been NED.  Despite this I know that there is always a possibility for recurrence (even at my Stage 1 there is a recurrence rate of 30-35%).  But like you, I just try my best to live my life and not focus on the cancer.  Otherwise I'd lose all the joy of living and that would be a tragedy.
Regarding the lymph node...  I'm assuming that you have a recurrence in the lung and something is showing up in the lymph node as well.  Was that discovered with a CT or PET Scan?  Either way, in answer to your question "Yes, I have seen many of our survivors here who've had recurrence and different types of involvement and have come through treatment NED.)"
There is quite a bit of hope offered considering the large number of survivors on this site and forum, and I hope that you'll take a bit of time to read a blog titled, "10 Steps to Surviving Lung Cancer; From a Survivor".  It can offer some important information on surviving this disease.  Please keep us updated as you continue your journey.

Lou

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Sam

I too struggle with anxiety and fear not knowing what my future is. I've been NED for 1 1/2 years now. I live my life and do the things I did before diagnosis. Sam keep fighting you CAN get there 

Chuck

 

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the majority of my cancer was in my lymph nodes - throughout my chest

impacted my breathing, caused discomfort and pinched the nerve to my left vocal cord

this was my first pet scan

Extensive mediastinal and left hilar lymphadenopathy is
redemonstrated.  The adenopathy is FDG avid.  In the superior
mediastinum the nodes measure up to 5.9 SUV.  Right paratracheal nodes
measure up to 8.5 SUV.  At the aorto pulmonary window than lymph nodes
measure up to 6.3 SUV.  At the left hilum maximum SUV of 6.1 is
recorded and in the subcarinal nodes maximum 7.9 SUV is demonstrated.
Left subpectoral and left axillary lymphadenopathy is also
demonstrated and is FDG avid.  The largest node at the left axilla
measures 2.1 cm with maximum 7.4 SUV.  The tiny 1 cm spicular focus in
the left upper lobe demonstrates intermediate FDG activity with
maximum 2.2 SUV.  At the L4 body there is a focal area of intense
activity in the right pedicle measuring 7.1 SUV suspicious for
metastatic lesion.

interpreted means something like '2 spots on the lungs, a spot on my spine and a buttload in my chest lymph nodes'

my last pet scan

No focal area of abnormal FDG accumulation is identified at the neck, chest, abdomen, or pelvis. There is no evidence of recurrent or metastatic neoplasm. Lucent and sclerotic bony lesions at L4 and the right ischium demonstrate a stable CT appearance with no FDG activity currently.

sounds promising - and this was at the bottom

IMPRESSION: Negative PET-CT exam.

so yeah - they can fight it in lymph nodes - this is how they fought mine

chemo - carboplatin and alimta

immuno - keytruda

every 3 weeks - for about a year (saw results before a year though) - stopped the carboplatin a few months back

kept my hair - not one day of nausea - my voice came back

some side effects but nothing i could not live with

not everyone reacts to chemo the same - i know that - and what i take might be on the mild side

we all fear the cancer but i would not let the news of a possible lymph node involvement add to the fear

 

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"Stable" is such a lovely word. "Lymph node" is not always, depending on what is happening with it. No matter what happens, the hardest thing for me is to live in the moment, aware of exactly what is around me that second, and to NOT let myself get outside of those parameters. 

Researchers learn more and more about lung cancer each day. Unfortunately, they have not (yet) learned to predict the future of anyone's lung cancer. I would love to say, "Don't worry, it will be fine," because neither I nor anyone else can say that with certainty. What I can say with complete confidence is that you can learn to manage the scanxiety and fear. You can live a rich and beautiful today, and you can string days and days and days together-- I know someone who has lived with Stage 4 for more than 14 years. 

Please hang in; please keep us posted.

K

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