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Lesion in brain and prominent nodes in the subcarinal space

Lesion in brain and prominent nodes in the subcarinal space

Posted by MommyT on Jun 24, 2020 8:18 am

I went for my CT scan on Monday and my bronchoscope yesterday. There is a lesion in my brain that they must investigate further and they are arranging an MRI and an appointment with a neurologist. They also found prominent nodes in the subcarinal space. Now, we just wait for appointments. The waiting game is the very very worst! I don't feel sick, I don't look sick! I just keep thinking ... this can't be!

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by Peanut123 on Jun 24, 2020 4:24 pm

MommyT‍   Hang in there.  I, like you was shocked when I learned I had stage 4 lung cancer.  Why me?? Once treatment starts, it will get better for you.  Learning to accept it is part of the healing process.  It is a hard time for us all with the COVID-19 and we have to be very careful.  Hope all works out as well for you as it has for me.  I feel good, don't look too bad and try to get on with my life to the best of my ability.  Take care and stay safe.

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by Rayline on Jun 24, 2020 11:09 pm

MommyT‍ I am sorry you are going through this. I felt as if I was on a roller coaster waiting for the ct scan, pet scan, biopsies. It was so overwhelming. Try to do things that are super loving and gentle. I took long hot baths with Epson salts, reading, watching Netflix just to relieve my mind that was working overtime. Like Peanut123‍ said you will feel better again it is just so unreal at this time. Looking back I realize there was so much grief. Take good care and know there is lots of love, understanding and support here. 

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by jorola on Jun 28, 2020 7:41 pm

Hello MommyT‍ 
When are your appointments? Just wondering how you are holding up?
Live, Laugh, Love

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by MommyT on Jun 28, 2020 9:35 pm

Hello. Thanks for thinking of me. I had an MRI on Friday and I see the Thoracic surgeon on Monday. They have also arrange an appointment with a Neurosurgeon for July 8. The waiting is very hard! The biggest thing is not knowing! But I will get some answers tomorrow. I have been keeping really busy and sleeping some, but when I'm awake, I'm very restless, scared! Fingers crossed that we have some favourable news tomorrow!

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by WestCoastSailor on Jun 29, 2020 10:30 am

MommyT‍ 

I hear you. I had a followup CT last Monday and meet with my oncologist this afternoon to hear the results. I"m 80% sure it is going to be okay but as I said to my caregiver on Saturday when we were talking, I have a sense of impending doom that I really haven't had before. It hasn't helped when I had my first misfire at my CT appointment and then the phlebotomist had trouble drawing blood yesterday too.

Still it will be news and there will be a path forward. I'll carry on writing and painting and talking my little heart out.

Looking forward to sharing good news at the end of the day.

Angus
My story: http://journey.anguspratt.ca

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by Lianne_adminCCS on Jun 29, 2020 12:25 pm

Thinking of you both MommyT‍ and WestCoastSailor‍  as you get results today.

Update us when you can.

Lianne

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by MommyT on Jun 29, 2020 5:02 pm

I got the results from the doctor today - he says that multiple lymph node stations are positive for metastatic adenocarcinoma of lung origin. He says I have some other ground-glass opacities in the lung, and he thinks I likely have multifocal disease with obviously the invasive lesion being in the middle lobe metastatic to the lung to the lymph nodes. The lesion in the brain vetted by MR appears to be more consistent with a meningioma rather than metastatic disease, given the lack of edema and the lack of any other lesions identified. I will see the neurosurgeon next week. It would look like I have stage IIIA lung cancer and given the multimodal station disease, he thinks I will be best treated nonoperatively with provision of chemoradiation. 
He has referred me to the cancer clinics close by here and when I called they did not have me in the system. I need to be triaged and it may be between 2 and 6 weeks before I hear from them. Is that too long a wait? Should I camp out at the cancer clinic to see if I can get in sooner? I am very very scared and worried!
Has anyone had the chemotherapy/radiation? 

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by MCoaster on Jun 29, 2020 6:03 pm

Hello MommyT‍ 

Although mine was a breast dcis cancer for was caught early enough to only require a mastectomy with no future treatment I can fully relate to wanting action now and the anxiety you must feel by what appears to be the inaction of others.   I found on my journey that approaching those in charge of the system in such a way that they understand how traumatic the waiting is for you while you also understand that the system is also under stress from the fallout of the pandemic.   Can you help them, have they all of your info they need, is there a possibility of being seen if there is a cancellation.   I personally found advocating for yourself in a kind and understanding way was the way to go.   Think iron fist in a beautiful silk velvet padded glove! 
Wishing you good luck both in your quest for treatment and for your journey.

Hugs.

Margaret

ps I found mindfulness and Nidra yoga really useful in dealing with stress.  The Nidra because my 75 year old body could manage it.

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by WestCoastSailor on Jun 29, 2020 9:12 pm

Yup it's good news indeed. MommyT‍ and a bunch of other people that are rooting for me. ashcon‍ , Brighty‍ , DaveNitsche‍ , CentralAB‍ , @WendyTea ,  Lianne_adminCCS‍  and a pile of others that I know I missed.

MY LUNGS ARE THE CLEAREST THE ONCOLOGIST AS SEEN THEM SINCE WE STARTED THIS MESS TWO YEARS AGO. Still won't call it NED but scarring from radiation is healing. Potential spots are gone. Void is gone -- even the scar is gone. So I'm breaking out the shrimp and having a celebration feast. Next scan in 3 months. So I'm done with these folks till September. Summer to celebrate!

Now back to you MommyT‍  -- assuming it isn't brain mets and it doesn't sound like it, you are actually ahead of where I started. I was at 3B and after the PET scan jumped to 3C before I started treatment. Not because the cancer was spreading just that the PET scan found more of it. So I started with aggressive chemo/radiation with curative intent. And then went on one of the new immunotherapies -- durvalumab to bat cleanup and get anything that the chemo radiation didn't get. It didn't work for me but the genetic panel showed that the adenocarinoma was EGFR+ and that let me begin what is known as a TKI. That little baby makes the tumour visible to my immune system and my body cleans it up. So far so good. It won't work forever but there are so many new drugs in the pipe line that my hope is that by the time it stops working that there will be something else.

Yes The wait is excruciating once you know what is happening. But it takes time for the system to kick in and the good news is that NSCLC is not particularly fast growing. The complex calculations for the radiation treatment will take up to a day for the radiation oncologist to plan, they then have to be translated for the machine that will be used, targetting developed. There is lots and lots going on behind the scenes.

Don't stop advocating though. The engaged patient is the one that is listened to and treated well. Use the time to prepare for the side effects and the fatigue.

Stay in touch and any other questions I'm happy to help.

Angus
My story: http://journey.anguspratt.ca

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by Brighty on Jun 29, 2020 9:24 pm

WestCoastSailor‍  omg !!!! That is the best news EVER!!!!!!! Sooo happy for you !!!!!!!!I'm doing the happy  dance!!!!!  You will give others hope too.   Thank you for sharing  your wonderful news! 
Help is out there. All you have to do is reach out.

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by Rayline on Jun 29, 2020 11:39 pm

WestCoastSailor‍ wow I so,so pleased with your news! What an absolute relief for you.I am so pleased that you are celebrating. Sending big hugs out to you💕

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by Rayline on Jun 30, 2020 12:11 am

MommyT‍ just a little of my story. Started with breast cancer which due to MRI uncovered the lung cancer. Was diagnosed last spring break 2019, seven months after the diagnostic mammogram. My sweet daughter was with me and we wanted to know if I could have surgery.  The surgeon said I could have surgery if there were no Mets to my brain more waiting as needed another ct scan which meant another two to three week waiting. So tired of the waiting my daughter and I went to emergency and had the ct scan done that day and had the results the next day. No Mets and I did have the lobectomy. We wrote a very persuasive email to get a timely surgery date. I am writing this to let you know we had to be quite proactive to get things rolling. Your health deserves the best care.  

 

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by Kuching on Jun 30, 2020 7:49 am

WestCoastSailor‍ 
Woo Hoo Angus!!!  That is wonderful news!  We are all celebrating with you!
airhugs,
Kuching

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by law on Jun 30, 2020 3:14 pm

WestCoastSailor‍ ....GREAT to read of your clear results!!! You must be super relieved and it's about time you got good news 
And, your new portrait pic is terrific too. You have admirable graphic skills.
Ciao for Now,
law

Re: Lesion in brain and prominent nodes in the subcarinal space

Posted by jorola on Jul 3, 2020 5:00 am

MommyT‍ it is understandable to be scared about what is happening right now. stage 3a is still curable so have hope. My husband was stage 3b and had chemo and radiation and came out the other side. I won't say it was always the easiest road but it was manageable. As for the meningioma my understanding it is the more curable cancer. Again all very overwhelming and scary news but you have rays of sunshine in there. Don't lose sight of that. I know it will feel easy to at times but lean on your supports and remember we are one of them.
What kinds of supports do you have in place?
If you have any questions about my husband's story, other questions, just ask. Even feel free to send me a message.
Thinking of you tonight.
Live, Laugh, Love