Mom dx with stage 4 lung cancer

[Cici145]

Hello. My mom was just dx with stage 5 lung cancer. Mets to the brain and adrenal gland. She was initially dx at a small community hospital where they recommended we start radiation to the brain immediately. We opted to go to a university hospital where now a week late she has and additional 4 lesions on the MRI they did. I’m terrified that we made the wrong decision and it has spread because of it. She was supposed to have radiosurgery the day after tomorrow but I assume that’s off now that there are so many lesions. All the doctors were positive before this bit now I feel we’re looking at months. Is immunotherapy the miracle people say it is? I’m desperate for a miracle.

[rdflynnjr]

My heart is with you and your mom. My heart is with you.

Rick

[JeanE41]

How heartbreaking this is. The only advice I have to offer is to take this one step at a time. Don't jump to conclusions until you have the full picture from the doctors handling your mother's care. There are many treatment options out there. Please don't second guess yourself. You made the decision to go to a facility that is most likely to be the most up to date on available treatment options and clinical trials.

Jean

[Cici145 in reply to JeanE41]

ThNk you. She does now have access to a clinical trial combining chemo and immunotherapy. Taking deep breaths and hoping for the best.

[JeanE41 in reply to Cici145]

I'm so glad you are now comfortable with your decision to move your mother to a university hospital. Small town hospitals can be wonderful when it comes to more routine situations, but cancer, especially lung cancer, needs a more inclusive approach. It sounds as though the doctors are on top of things here.

Take a deep breath now. Your mom is in good hands. Please take time for yourself. I believe it is harder on family and friends to watch a loved one go through this journey than it is on the patient. Your mom is blessed to have you with her through this.

Jean

[Denzie Moderator Volunteer]

Please know that you made the right choice. (For all the reasons Jean mentioned). The new lesions were already there but were too small to be picked up on the initial MRI.

The first step will still be to radiate the brain mets. They like to do that first. You don’t say what type of lung cancer she has. Thank If she has small cell cancer they will do whole brain radiation, if she has non small cell she may also have the option of Stereotactic radiation (gamma or cyberknife).

It’s very exciting that she has access now to this clinical trial. Sometimes the best chances a patient has is via clinical trial. I’ve a cordial acquaintance who is 11 years now with stage 4, 10 of those on clinical trials.

Sending hope for an amazing response to treatment.

[Cici145 in reply to Denzie]

Thank you Debbie for your reply. It gives me great solace and even a glimmer of hope. She has NSCLC and is scheduled for cyberknife th to her Brain tomorrow. Her PET scan came back showing Mets to lymph node instead of to the adrenal, thyroid and stomach as we were told at the other hospital. Even more eggregiously, the tumor is in the right lung not the left as was indicated in the narrative at the other hospital. We are now very thankful that we got her out of there and hoping for the best. Thank you for your input. It meant a lot during a very dark time.

[Cici145 in reply to Cici145]

Stupid autocorrect. Thank you Denzie

[FtB_Peggy]

Geedee1, please feel confident in your decision. Your mother is in good hands now. As others have said, please take care of yourself too. One day at a time. And please keep talking to us.

[Cici145 in reply to FtB_Peggy]

I will definitely be here. I have already found this site to be an invaluable resource. A small ray of light in a very dark place.

[SusieJo1948]

Geedee1 I'm thinking of you and your mom; hope they can find something to help. Everyone is right; She's in the right place; Hang in there; If you need to talk or cry or rant, I'm here and so is everyone else. susiejo1948

[ThePurplePlace]

Please know that it takes time to go through the diagnostic stage and that they all would have done that MRI and the mets would have been found. One week would not likely have ever changed the outcome. I had a brain met at my diagnosis and did have Cyberknife (SRS). I hope it works well for your Mom. You can't go back and change time -- take each step as they come. I developed Neuro issues before my cancer was found..was very sick, very suddenly. Now, almost three years later I am stable! Best wishes for your Mom...think positive!! ~ Lisa

PS: I think you were very wise to go for a second opinion, it's something most of us do, and never regret.

[Cici145 in reply to ThePurplePlace]

Thank you so much for your reply Lisa. Thanks to the kind and wise words of you and the others who replied here, I am very confident that we made the right decision. My mom had the cyberknife treatment yesterday and it seemed to go well. She is in good spirits and we are all determined to stay positive.

My mom’s story sounds much like yours. She became very sick, very suddenly. We are happy to have her back to her normal self now (other than her tremendous appetite from the steroids).

Thank you again. This site has been so helpful to me thanks to kind people like yourself. Take care~ Cici