My rare, aggressive cancer (lung sarcoma) is back. Now what?

I so sorry for your news. I’m still learning about these decisions, but when you say it grew back after the first removal, did they not consider a lobectomy at that time? I’m not suggesting they should have because what do I know - but I had a lobectomy of left Lower lobe for a 1.5cm tumor.

Hi Pam @pb50 During the first surgery, they took most of my upper left lobe. The tumor was somehow growing into my chest wall too though, so they weren't able to get all of it. Now the tumors seem to be growing in the fluid between my lung and plura. I do wonder about taking the whole lung but that hasn't been discussed.

Ah. Well that has to be challenging. I guess taking the whole lung wouldn’t solve for the part in the pleural space. So perhaps they are balancing gain against worsening your recovery condition.

I am so sorry this is happening. I know when my rare cancer returned it felt so disheartening. Like I was caught up in a nightmare that wouldn't stop. What did I do? For me, my faith was a great help. I also had the blessing of learning that anything I put all of my energy into could become an " idol" so to speak in my life. Make cancer an idol?!? Something that controlled everything?? No!
That was a choice i could try to control. So I worked hard to try and balance my focus... to live my life as much as I could despite the challenges. To focus on positives like my family and children.
I controlled some of the anxiety I had with writing out my questions in a notebook for my doctors. Someone told me to journal but frankly I was too tired , weak and dealing with pain to write much. So I did a "one word" journal. I took a few moments to reflect and acknowledge how I was feeling at that exact moment and then give myself the grace and permission to say it was okay to write it out in one word. " Dark" was a frequent word, " lost" and "drowning" were others . Ive not shared those thoughts before , i guess there was some shame looking back. But I understand now that Those are normal feelings for someone going through what trauma cancer brings.
Then I determined ( again a choice I controlled) , to keep positive thoughts before me, because I was simply too lost and weary to think of them myself ... and we were poor... so I took a calendar that had encouraging pictures and sayings on them and taped them up where I could see them... I put uplifting scriptures on my bathroom mirror and across from my bed, used an cup with uplifting focus for my drinks etc.. Simple things like that helped me navigate those difficult times. I am praying for you . May you find things that help you cope as you are healed. Hugs !

My heart goes out to you, I truly feel your pain and anxiety and you are not alone, there are many of us going through the same nightmare…I know that you feel alone because when you’re not doing well at this time you want to withdraw from everyone and all the questions that you can’t always answer because you’re still working through this stuff with your doctor and with yourself. I’m also a lung cancer survivor, one upper left lobe and later a section was removed from the lower right lobe. I have done everything that I can do to help myself with this frightening stage of my life and it’s going slowly but I have felt a great deal of comfort and support from the people here on connect and I’m very happy I decided to join. I sincerely hope you will have an easy journey with minimal stress and discomfort, also please know that you are in my thoughts and prayers, stay positive and don’t give up the fight.

Thank you. It is comforting knowing that I'm not alone in all this. I still think sometimes, "why me?", "What did I do to deserve this?" I thought I had this almost beat, I thought I was on the up and up healing and recovering. It was so disheartening finding out that it's back and already grown so large. My husband has been so wonderful and supportive through all this, and I'm so thankful. I know this situation is not easy for him either. We're both worried and scared. I'm having a pet scan tomorrow, and then my doctors will decide what treatment is best at this point. I just hope some kind of treatment starts soon.

I know that the waiting for them to get started is a tough time…they often get together with other colleagues who help them make decisions as to the best way to do things, first thing is all the tests and then after much deliberation with other doctors they will give you all the information you need. A good partner in your life is the best thing you can ever have when dealing with your health and of course supportive family and friends if you have them to turn to for support.