Dad diagnosed with Stage IV and brain met

[dmfan71]

Hi everyone,

My dad is 69 and a smoker of 55 years.  Back in May of this year, he was experiencing severe headaches and then his vision was blurry and he was acting like he was drunk...wobbly, trouble walking, falling etc.  He finally decided to go to emerg.  They did CT/MRI/blood work etc...they found a brain tumor on his cerebellum.  Next day he saw a neurosurgeon and within 10 days he had surgery.  They removed 80% of the tumor but were unable to remove it all as it was close to the brain stem.  2 weeks later it was confirmed the primary site was lung cancer (nsclc adenocarcinoma).  We had no idea he had lung cancer.  He has started chemo 3 weeks ago and will be going again tomorrow for chemo and then another treatment 3 weeks after that.  He also had cyber knife radiation for the remaining brain tumor.  He has still not recovered from the surgery...unstable walking at times, double vision and headaches etc.  He has also had a bone scan (results available tomorrow) as they suspected it might have spread to the bones and another CT scan.  Other possible sites were liver and pancreas as something small showed there at the initial scan but too small to determine at this point.  He also has early stages of prostate cancer (gleason score of 6 so still observations).  He is also having an MRI this Saturday and results to be discussed with dr Oct 25th.

This is what was noted in the last CT scan:

there is confirmation of a right hilar mass measuring 4.8 x 5.2 x 5.2 cm. This surrounds the brochovascular bundle narrowing right lower lobe pulmonary artery, bronchus intermedius and right middle and lower lobe airways, which remain patent.  There is also extension of density to a pleural-based mass more posterior in the superior segment of the right lower lobe measuring 3.4 x 2.2 cm in the axial plane.

Confirmation of a right hilar mass concerning for primary lung cancer malignancy with another adjacent plueral based mass in the superior segment of the right lower lobe with mediastinal lymphadenopathy.

When I googled mediastinal lymphadenopathy it said it has spread to the lymph nodes...is this correct? 

When I asked the radiation oncologist prognosis, he said 12-14 months with treatment.  I know every case is different and could be longer or shorter.  He did mention that because it has spread to the brain that the cells can multiply as fast as 90 days so I am guessing that's why maybe prognosis isn't good because once its in the brain it is harder to control etc?

I don't live with my parents so I can only go by what I see when I visit and what my mom/sister tell me...he has good days and bad days...some days he feels worse than others.  My dad is not one to complain or give a lot of details..he keeps a lot to himself healthwise but this is what they have observed.  He has really aged since the brain surgery.  Because of where the tumor was its really affected mobility, sight, hearing etc.

As his appointment is tomorrow I am sure it will be confirmed whether or not it has spread to the bones etc.  I don't know what type of chemo he is on (I'm guessing there are different types?) but if it has spread to other parts will the chemo just go to where it needs to go so everywhere?  I really don't know much about chemo and how it all works. 

Also if anyone here has had nsclc with brain met(s) can you please shed some light...are there any drugs that can get past the blood/brain barrier?  We are in Toronto, Canada, so I am sure that maybe drugs are different worldwide and some not available to everyone in all parts of the world.

I'm really trying to be positive and hope for the best but I also don't want to be blindsided so I am taking it one day at a time and as we get more information and results, then I just go with it.  I think my dad is doing the same.

any information or insight would be helpful :-)

thanks,
Michelle

 

[BridgetO]

Hi Michelle and welcome here. I'm sorry to hear that your dad has had such a hard time. I haven't had brain mets so can't give you an first hand information but I suspect you'll hear from others who have. Mediastinal lymphadenopathy means that the lymph nodes in the middle of the chest between the lungs are enlarged or diseased. It can be from a number of causes including infection or inflamation. Given his adenocarcinoma, it sees likely that it's related to that. Lung Cancer 101 on the Lungvity main website is  a good place to look for information about lung cancer. In case you haven't seen it yet, here's a link: https://lungevity.org/for-patients-caregivers/lung-cancer-101. Hang in there with your dad.

Bridget O

[Tom Galli]

Michelle,

Your dad has a lot going on. First, about life prognosis, no one knows for certain. Your dad has metastatic lung cancer and the residual tumor in the brain is of vast concern. 

Yes, there are types of chemo that penetrate the blood brain barrier. I don’t have access to my computer (writing this on a cruise ship on my phone) so I can’t search and link the types that might be effective against NSCLC adenocarcinoma. 

Chemo circulates throughout the body so it should be able to attack his cancer everywhere but the brain. Special formulations are used in the brain. 

Adenocarcinoma may respond to targeted therapy or immunotherapy. A lab biopsy of his removed brain tumor should have been sent to determine if the requisite tumor markers are present. Ask about this during the consultation. Also ask if targeted therapy and immunotherapy pass the blood brain barrier. 

So, there is the information. Insight is tougher to provide. I’ll level with you. Brain mets really complicate treatment. Treatment availability in Canada also complicates things. Moreover, access to curative care in Canada may be a factor given the extent of your father’s disease. 

My answers won’t lift your spirits. I wish I could. Your dad has a late stage find and these are the most difficult to treat. I hope for the best. 

Stay the course. 

Tom

[dmfan71]

Thanks for the responses and I do appreciate the honesty.  I'm hoping for the best and a bit of expecting the worst.  In my heart I know its not good but trying to be positive.  I just wish he had the same quality of life he had before the surgery.

thanks for the link Bridget

Enjoy the cruise Tom!!

[dmfan71]

UPDATE on my dad.....

He had an MRI done and it showed 5 new small brain mets which he had cyber knife radiation on about 3 days after the diagnosis.  His oncologist said because the lung cancer hadn't been treated/under control he will still get brain mets....he also said because it takes them 90 days to multiply that even at the next MRI there could still be more.  Once the lung cancer has been treated then we shouldn't be getting any more brain mets.

Now onto the lung cancer...after 1 round of chemo they did a CT scan and it showed the tumor grew and there was another nodule which the dr said was most likely another cancer tumor...now he has had 4 chemo treatments and just had a CT scan which showed both tumors had shrunk about 50% so they want to do another round in 3 weeks and then do another CT scan.

Please excuse my ignorance but I really don't know much about chemo/stage 4 etc so I am hoping someone can shed some light.  I know stage 4 is not curable but treatable...Does chemo just shrink the tumors?  Does this mean that if he stops chemo all together that they will start growing/spreading again?  I thought my mom mentioned that after the next round if they see it has shrunk again, he would be on a lower dose..is this how they maintain it?  Will he be on chemo the rest of this life?  If they can control it with chemo then why do people die from cancer?  wouldn't they just stay on chemo forever?  again, sorry if these sound like dumb questions but I don't really know anything about chemo/cancer and how it all works.  

thank you!
Michelle