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Stage IV Lung Cancer with 4 brain Mets

Tac1126
Posts: 3
Joined: Apr 2012

My Mother (age 47) was just Diagnosed with stage 4 lung cancer that has spread to her Brain (4 mets total). She has undergone 2 days of radiation to treat the brain mets (cyberknife treatment). Her doc’s only did 2 days of radiation treatments (2-3 hrs per day). She will then undergo another MRI in two weeks to see how the mets have responded to treatment. We still have no game plan in place to tackle the mass her left lung. The doc said they cannot treat the mass in her lung until everything is out of her brain. Is this normal? She hasn’t had any side effects from the radiation and looking at her you would not be able to tell she is sick. This has all be so scary for everyone in my family. She had no symptoms and the cancer was discovered by accident. Overall the docs have been optimistic with her treatment and no odds have be given to us regarding how long she has to live. After reading a lot of these other posts, I have noticed that the majority of doc’s have told the patience this information. I am wondering why they haven’t said anything to us??

My mom has 5 kids the youngest who is only 22. I am only 27 and am trying to hold it together for my Mom. I am too scared to research the cancer online b/c everything that I find is too hard to read b/c of the horrific odds/outcomes described. I’m starting to come to the terms that my mom has cancer and I’m actually now able to talk about it without breaking down. My mom is my rock and I just find it impossible to think that I will lose her anytime soon. I hope to use this website to gain knowledge from other cancer survivors and to gain insight on the type of treatments are available. I want to learn everything I can to ensure she gets the best treatments possible. I pray to GOD that her treatments will work and she will one day be in remission. I know we have a long road ahead of us and I pray for the strength for all of us to get through it.

reader_7
Posts: 2
Joined: Apr 2012

I related to your situation! My husband was diagnosed with lung cancer, stage 4, in Nov. 2011. It too had spread - to the brain (which I learned is not an unusual occurrence for lung cancer) where there were two lesions (one on the right and one on the left) and to the adrenal gland. We discovered it after he had a seizure and was rushed to the hospital. The news was devastating! And I cried for weeks. Although my husband is in his early 60's, I guess it is never an easy diagnosis to hear - it changes everything. Although it is very difficult to hear the prognosis, it does give family a sense of time in which things can be handled. And a game plan means that action will be taken by people who know what they are doing; it gives you something to hold on to. I would definitely recommend that you pursue any questions you have with the dr. and staff. Our doctors have been quite forthcoming, and it has been encouraging to feel that they are knowledgeable and to feel their confidence and there is a plan in an area where we feel so lost. Although there was a plan in the beginning, it was tentative - there was Plan A, and if that didn't do what was needed, there was Plan B. Also, there may be opportunities to participate in studies, which can be helpful options; just be sure to get all questions answered about them.

You are so smart to search for information. Learning from other people's experiences can be a great help and can generate questions to ask the dr., even though each situation is different. I know that our children are a wonderful support for us and also for each other.

For my husband, the plan was first to do surgery to remove the tumor that was responsible for the seizure. For the 2nd tumor, we had the choice of going with radiation or surgery. After gathering information, we elected to do surgery. For us it was a good choice because of where the tumor was in the brain, but it was very scary. After about 3 weeks, radiation was begun. Ours was 15 treatments – 5 days a week for about 15 minutes a day. The only after-effect of that was the loss of hair. Then, it was time to address the lung cancer, where all of this started, with chemo – about 2 months after diagnosis.

It was difficult for me to think of how much time went by before the lungs could be treated. I knew the tumors would continue to grow while all the other was being done. But I discovered that the order in which they were done was necessary. So many problems can develop from tumors in the brain, so they must be dealt with first. We are currently in the middle of 6 treatments of chemo – one every three weeks. Each treatment takes about 5 hours or so – with two medications, taxol and carboplatin. The plan includes a CT scan after every two treatments to assess the growth of the tumors. The first scan indicated that the tumors were neither shrinking nor growing, so we continue with the same treatments. The dr. told us that because cancer cells grow quickly, the fact that the tumors were stable was a very good sign. Although the side effects are much worse than with radiation, we have found by talking to other people as well as with the dr. and the literature he has given us that most if not all of the side-effects will disappear after the treatments.

I have also found that people with the same cancer will sometimes get different treatments. But I have come to trust our dr. and his judgment because he is willing to share with us the whys of our particular path and to answer any questions we have. We have also requested copies of the scans and the written reports, and they have been provided for us very willingly (they are, after all, our personal records). But reading through that info has been difficult for me. My husband does not read through the written reports nor look at the scans. A couple of our children have medical backgrounds and are interested in these things – and understand them better! But asking for that information is up to you.

It sounds to me like you have come to terms with this new course in your life – that is a healthy beginning. Doesn't make the road any easier, just makes you more able to navigate it. Prayer will give you great strength, comfort, and learning. Best of luck to you and your family!

Tac1126
Posts: 3
Joined: Apr 2012

Thank you for your response. It truly does help to talk to other people who are going with similar experiences. I hope that your husband and family are doing well. I will pray that you all have the strength to contuine this joruney together.

We found out today that that cell type is squamous cell carcinoma. We are scheduled to start the chemo treatment next week. In the past few days my mom starting to have blury vision again so they doctors deciede to do another MRI scan to see if it was just swelling in the brain from the radiation treatment or if there are more tumors on the brain. We got the MRI results back today and they told us there is another 3mm tumor on her brain. This wasn't what we were hoping to hear but he docotor did say the 4 other tumors that were treated with raditaion about a month ago were in fact shrinking.

I have yet to ask any doctors we have seen how long they predict she has with treatment. I know whatever they say is just a number and isn't always the results people see, but I feel like this is something we should know. I just got enagaged 2 months ago and we are planning a wedding for June 2013. My worst fear is to wait that long and something bad happen to my mom. I dont know what to do. Does anyone recommend asking the doctor that type of question? or do you think its just too negative and discouraging?

arlekim's picture
arlekim
Posts: 47
Joined: Mar 2012

Hola Tac,

reading your post has opened my eyes as to are my girls questioning the same as you? How long do i have? As a mother who has been recently diagnosed, My advise is, ask your docs all the questions you have in mind. You might ask your docs in private. But do write down all your questions cause we tend to forget when infrint of the docs. I must also say, my dad passed away of colon cancer in 01 and I did tones of research n informed myself real good. Thnk for opening my eyes from a daughters stand... You will all be in my nigthly prayers. Give ur mom lots of hugs n kisses, something I'm lacking from my girls right now.. Maybe they r scared...

Gracias
Marcia

reader_7
Posts: 2
Joined: Apr 2012

I totally agree with Marcia about asking all the questions you have. Even though hearing some answers is very difficult! And you are right that a prognosis is mostly an educated guess, just a number. So perhaps you could ask yourself: would I rather have asked and wished I hadn't, or hadn't asked and wished I had? For me and my family, we wanted a ballpark figure and then we hope for the best and beyond. Besides, having a time frame does not mean you are negative - it just gives people an opportunity to say, do, whatever they feel needs to be said, done, while they still have the chance. And if that time period goes longer - hooray! it likely hasn't hurt a thing and most likely even enriched the relationship.

We all know any of us could pass on at any time - knowing that there is a limited time is in some way a gift to get said and done things you might otherwise have put off.

I am sure that many prayers are being offered for you and your family! Add mine to them.

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