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Lung cancer that spread to brain-Metastatic- Very Devastated

mikeneo3450
Posts: 2
Joined: Nov 2013

 

Hello All

My mother, who is 59, was recently a week ago diagnosed with non-small cell lung cancer stage 3A, which means it's in her right lung only and spread to some of her lymph nodes. We were told because of the stage, surgery could be an option that would provide the best results. We were happy to hear that but then some more sad news came. She did an MRI 2 days ago and they said that it has spread to the brain in 2 different areas. Because of this they are now saying it is staged up to Metastatic cancer, (which surgery now might not be an option) which really worries me.

 

Not to mention about 4 month ago she was diagnosed with lupus and have been taking medications to control it, which led to the CT scans that found the cancer. Lupus is a disease that affects the immune system. This is been very sad news for her and all of us. I have been very worried. I have lots of questions and have been reading a lot and very sad and would like help. We have not met with the oncologist yet, just family doctors and her lupus doctor. My mother seems fine right now; she does not have any symptoms, just some minor headaches at times.

If anyone can help or has or know someone that has what my mother has or know of this please let me know or can comment anything related, that would really help us.

Could the lupus have anything to do with cancer? Could her lupus have caused the cancer? Or could they be related? Or just a coincidence?

 

During the treatment for lupus, she had an x-ray done of her lungs which they suspected of the mass, then did the pat scan which showed the lung cancer and then the preliminary biopsy results came in this week confirming the lung cancer but only one MRI was done 2 days ago, which showed spreading to her brain. Any changes the MRI could be wrong? How about the whole cancer diagnosis, any chances it could be wrong too? Should we get a second opinion and get another CT scan and MRI done to confirm it did go to the brain? I am very worried about the cancer going into the brain.

 

We have been going to a county hospital for her primary care and exams, HARBOR UCLA here in Torrance, CA; The family doctor is nice and very caring, most of doctors are finishing their residency there, but as a county hospital it's a long wait for everything and for a specialist. I am looking to take her to a private care. And want to make sure she gets the best care an treatments. I am also looking into private health care plans for her.  Any recommendations or suggestions?  What can we expect now? I have been reading cancer that spread to brain is very very severe. We have not discussed treatment options yet, but they want to schedule radiation ASAP. Because this I really like to discuss her options. Thank you so much for reading this any comment will be greatly appreciate it

thank you so much!

Michael

 

Ladylacy
Posts: 517
Joined: Apr 2012

First, I'm sorry to hear about your mother.  I know how hard this is.  I am assuming that she had a biopsy done because you said it was Stage 3A.  If she hasn't had a biopsy done, that is the first thing that needs to be done.  Second she should be seeing a lung specialist who deals with this type of cancer.  I can remember about 15 years ago, my husband during a physical and chest xray was told he had lung cancer.  A CT scan confirmed a large mass in his lung.  We were very scared but a lung specialist did a bronoscope and then came out and told me it wasn't lung cancer but a severe lung infection.  But now fast forward and after underoing radiation, chemo and a laryngectomy and being NED for a year, he was found to have a second primary at the cervical of his esophagus.  Surgery was ruled out due to previous radiation and surgery.  So he under went another round of radiation and chemo.  Three months later after a PET/CT scan he was NED.  Then 4 months later after another PET/SC scan the cancer had reoccurred and spread to his right lung.  They did a lung biopsy which confirmed what the PET/CT scan was saying.  My husband option for no further treatment.  We are 10 months out from that and he is slowly loosing the battle. 

Please be sure you get your mother to a lung specialist.  We do have a saying here that until it is biopsied it ain't cancer.  All tests can be false positive but the biopsy isn't.  Although that has happened on occasion.  As far as lupus causing cancer, I don't know about that.  I know that 10 years ago my husband was diagnosed with a rare blood cancer and has been on chemo pills ever since.  Now did this cause the laryngeal cancer, the lung cancer and the cancer at the cervical of his esophagus, no one knows.  I asked.   

Wishing your family the best -- Sharon

rdn2blazer
Posts: 39
Joined: Sep 2013

  Hello Michael. I also want to say how sorry I am to hear your mother is going through this. I can tell you first hand, as long as she is still alive there IS still hope. I am 46 and last year I almost died from this very same thing. I had lung cancer (I did not know about) that had also spread to my brain and caused a single tumor. One Saturday May 5th, Cinco Da Mayo 2012, I was in the shower getting ready for work and I passed out and nearly dropped dead right then and there. I had such massive brain sewlling that it turned the light out on me. It's a long story I won't go into here, but all my doctors, the cancer doc, Neurosurgeon, the Thorasic lung surgeon all said it's a mirical I'm alive. The swelling was so severe it should have killed me. My doctor said only about 1 or 2 % of people with that much brain swelling survive, and most end up with some form of disibility from the brain damage due to the swelling. I had 7 1/2 hours of brain surgery to remove the tumor. I had one radiation treatment to my head.

  Then about a month and a half later I had 1/3 of my right lung removed in another 7 hour surgery. I also had a 3 hour biopsy surgery to check my Lymph Nodes in my chest, they was clear thank god. I've been through hell in the last year and a half. Surgery recovery was absolutely brutal. But I AM alive and fighting this thing with all I've got. I have a young son who was 10 at the time, and a girlfriend of 15 years, both have been through hell with me along the way. But, we are together and fighting this together. DO NOT GIVE UP HOPE brother. No it does not gaurantee a positive outcome, but without hope there is no fight period, and without a fight, there is no positive outcome. She has to want to live, which I'm sure she does. I live and work near the Torrance area. Infact I grew up in Torrance most my life. I'd be happy to discuss anything you want if it would help. I was treated at the UCLA medical center in Wenswood. One of the top brain tumor cancer hospitals in the country. My doctors have been awesome. You let me know and we can exchange numbers in a PM. I'm still taking chemo meds. Have for a year and I went through infusion chemo too. I have 20 inches of new scar to show for this fight, and my life. I'll happily accept these news scars as my battle scars fighting this aweful desease. They only add to my already vast collection for all the many near death experiences I've had throughout my life. I have more then nine lives for darn sure. I AM a survivor. Good luck and prayers sent to you and your mother and family. God speed.

 

Rob

mikeneo3450
Posts: 2
Joined: Nov 2013

Hello All,
Thank you sooo much for all the replies. I really appreciate it! It has been a crazy week. After I wrote here. A Day later my mother felt severe headaches and her left eye vision was affected. She was seeing a lot of shadows and left sight was really bad. We rushed to the ER. they gave her pain meds for pain and did another Scan of her head. they then said that her tumors were swollen, pressuring the organs causing her symptoms. she was admitted for 2 days to the hospital. They prescribed her 6mg every 6 hrs of steroid to bring swelling down and recommended Whole brain radiation right away. So we started whole brain radiation. They recommended 40gy doses for 15 treatments of whole brain radiation. She is feeling a little better, left eye is much better, but she's often weak and dizzy sometimes. We are on day 4 of radiation. When I asked the radiation oncologist they recommended Whole btain because she has more than 2 tumors possible 3rd and there could be other small ones.
WAS this the best recommendation?
I have all her results/scans and exactly size location.
The lung tumor is only on the left lung apprx size is 3cm, and it spread to 3 possible 4 lymph nodes near by and to the brain. I was looking at the MRI, it shows 2 and maybe some other very tiny mets in the brain. (very hard to see) MRI report says 2 mets possible 3rd one. the sizes of the mets are 2cm and 3cm . the location is Basil Ganglia and Occipital. Was Whole Brain the most recommended best way? could any other ways/ a more aggressive approach have been done? higher doses? or targeted to the big more noticeable mets for more affective results? We have 2 apt with oncologist to discuss the over all treatments. What do we expect? what question to ask and prioritize? I am reading about Gerson therapy? (nutrition treatments) does it really work? I don't want to reply on it mainly, but want to try it, can I combine with the conventional treatments? I am having my mother only eat greens, vegetable and fruits, and lots of vitamin C. As far as mutation, they are still trying to conduct testes with the tissue they removed from her biopsy and will let us know the final results.
I want to fight and not give up, and so does she!. Everywhere I read says few month left. I am very sad and worried. But we want to keep the fright. Any thoughts and recommendations will be greatly appreciated. Thank you soo much Mike

dennycee
Posts: 686
Joined: Mar 2011

Stereotactic radiation is something that might have been explored if you'd had more time.  the severity of the side effects dictated rapid response so, yes, this was the right choice.  In the event that there are recurrences in the future she will likely be able to have gamma knife surgery or (if she is EGFR+) pulsed tarceva maybe even one of the newer ones in development that can break through the blood brain barrier.

There is a gentleman who participates on the boards at lovelunglink.org whose lung cancer was diagnosed much the same as your mom's and Rob's fourteen years ago.. Yes 14!  Rob's story is compelling as well   and I thank him for sharing it.  

Gerson is dangerous.  he uses only anecdotal information and has no hard scientific data to back it up.  There is no single cause or failure in our cells that cause cancer.  Therefore there is no single treatment for cancers.  If he had truly found one, he would have received the Nobel Prize.  His name would be a household word, Big Insurance would not let Big Pharma bury it.  Too many times I've fought back tears reading stories of families who put their life savings into treatment there at stage two or three only to come home after being told they were cured and learn a week or month later that the disease never abated only grew to stage four and were too numerous to count.  

Seriously?  Juicing is a great idea and really helpful at this stage of treatment where fatigue and mental fog make it hard to stay on top of eating and drinking enough.  It is important to note that vegetarians (including Vegans) who never smoked, develop lung cancer, too.    So do google the terms Gershon and quack together to learn more. 

mesofriend
Posts: 1
Joined: Dec 2013

How is your mother doing?  My mother also had lung cancer that spread to her brain. That's when I learned that alot of lung cancers spread to the brain, it wouldn've been nice to know that earlier so we'd be prepared for it or at least knew the symptoms. Unfortunately my mother chose to not have any further treatments after it was discovered since she had gone through a year of chemo and radiation. She said if it came back she wouldn't do it again. It was exactly 10 yrs from the time she was diagnosed with lung cancer to her diagnosis of brain cancer. She never missed a dr. appt. She went to her cancer dr. in November and was diagnosed with brain cancer in December. When she had pain in her left eye, we took her to the doctor that said she had pink eye and prescribed drops. The very next day she was in excrutiating pain in her eye and forehead. Went to ER where they did a CT scan and we were told of the cancer. The next evening she had the pet scan, the cancer was throughout her brain, stomach, kidneys, liver and lower intestines and starting in her bones. It's rough. Hope your mother is able to stand the treatments.

dennycee
Posts: 686
Joined: Mar 2011

Mesofriend,

So very sorry to read your mom's story.  I do have a question about it though.  In the ten years,after her diagnosis did they not continue with annual CT scans?  If they had it should have been caught.  After 5 years they say that it is a different cancer, did she allow them to do a biopsy of this one?  Are they just assuming that it is the same cancer?

No one should ever have to go through the h*ll your family is being put through at this time.  I hope they are able to manage her pain.

 

nanaof7
Posts: 127
Joined: Feb 2009

I was dx for lupus it turned out I had lung cancer because after my surgery all symptoms of lupus disappeared this happened when I was 57 I started with radiation and chemo decided to stop treatment ( 2nd opinion )  to have surgery instead. after surgery i asked dr to give me chemo to clean up any strays cells they told me that I didn't need it first mist ake ! Following year it went to brain 3 tumors bleeding, wbr worked well I was put on tarceva I was givin 3-6 months to live that was almost 4 years ago so never give up stay positive anything can happen when 

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