Poorly differentiated adenocarcinoma of the lung with mets

mommysgirl

Hi All. I am new to this forum and have been very touched from some of the posts.
My life too was recently touched by lung cancer. My mom is 57 and was diagnosed May 25, 2007 with poorly differentiated adenocarcinoma of the lung with mets to the brain. She has been a smoker for as long as I can remember. The doctors have been, to say the least, very vague with any answers to our questions. We were told that the cancer was in-operable but was not given a reason why. Within a week of my moms diagnosis she was having extreme neurological deficits. They put her in the hospital on high dose steroids. Did an MRI and found a tumor on her right parietal lobe that measured 16x14x11. She was only in the hospital for 3 days, but that was long enough to get her radiation treatments to her brain started. She had a total of 15 whole brain radiation treatments and was told by the oncologist that there was a greater than 90% chance that the brain tumor would be gone. The nurse at the radiation center told us that she could not have a repeat MRI of her brain until 6 weeks after her last treatment. So she began chemo for the tumor in her lung which encompassed the top 1/3 of her right lung and we waited. Meanwhile the major neurological symptoms had disapeared, and meanwhile mom was on a constant roller coaster. One day she wanted to persue treatments the next she was ready to throw in the towel. She has had a total of 5 chemo treatments now. After asking the oncologist frequently when mom would be able to have a repeat MRI of her brain we were told that she had to wait at least 12 weeks after her last radiation treatment because the radiation was still working. I am pretty sure that my moms thinking was that if the tumor was still in her brain that she was going to stop the chemo. She has said that she does not want to live what time she has left sick. In the meantime she continually fights upper respiratory infections but refuses to go in the hospital. She has missed a total of 4 treatments because she has been sick. The doctor recently gave in to our repeated requests for another MRI of her brain which ended up being 14 weeks from her last radiation treatment. When he called her the results I was stunned!!!!!! He told my mom that he was thrilled to tell her that the radiation to her brain had shrunk her tumor to about half its original size more than he ever expected and that the radiation would continue to shrink the tumor over the next three months and that he fully expected it to be completely gone! This should be great news right???? My mom thought so and I didn't say a word to discourage her, but doesn't that make like three different time frames that we were given that the radiation would still be working??? 6 weeks, 12 weeks, and then 6 months??? Now I am very leary of any thing this doctor says.. They never did a biopsy. The only other tests done was a bone scan and a chest CT. I do not want to discourage my mom at all, but I did not think that was great news, or am I being too negative about the whole situation. This whole cancer ordeal has been especially hard for me because I am the oldest daughter and the one my mom always relies on, and to make matters even worse I am a Registered Nurse, and she is always looking to me for ALL the answers. I know some of the answers but I do not feel like I should be the one who has to answer them. I dont want to be the one that answers them. I feel like her doctor is not being completely honest with her about her diagnosis and expected survival time(Quite frankly he has not given her a prognosis or survival). She cannot have any more radiation, and now she is starting to develop mild neurological symptoms again, headache and left sided facial droop, the droop is mild but it is there. And all along she just keeps asking me why do I feel so sick all the time? Does any one know how long radiation continues to work in the brain?? Because I am very skepticle of this doctor now. If I thought it could mean a better outcome for my mom I would suggest a different doctor, but I do not think that would have any bearing on her prognosis. My worst fear is that my mom will look at me in her final days and say GOD! Why did YOU let me go through all that treatment and be so sick. I do not know how to tell my mom that fighting the cancer can make you very sick, and that sometimes the sickness can take you before the cancer. She is feeling very sick right now and keeps looking to me for answers. She thinks she must still have an upper respiratory infection, because she is still so sick. She has been on all the top line antibiotics, and clinically she does NOT have an upper respiratory infection. She has no fever, her lungs sound good and she has no cough. Her chest x-ray showed no pneumonia. My mom also thinks she can fight cancer head on and not ever have to be put in the hospital. That is not very realistic at all. I have tried to very politely tell her that cancer is like poison in her body and that it takes poison to kill poison and that she probably is not going to feel too good, and then I am looked at by her and my siblings as the "negative" vibe in the family. Sometimes I feel like I cannot win for losing. It seems like I never say the right thing. Sorry to ramble on so much.
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mommysgirl

My mom's story
http://cancerforums.net/about7278.html

My dad's story
http://cancerforums.net/about8169.html

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

I am sorry to hear about your Mom.. it is hard to see our Mom's suffer... It sounds like your siblings are struggling with the news of your Mom's health.. and they don't know who to blame. You are not the one to blame.. Cancer impacts everyone in a family.. I pray for peace for your family and that you can join together in love to support and love your Mom. Your Mom needs you - you are her daughter and she TRUSTS you - that is why she asks for your advice. She is afraid.. and her body is betraying her.

Regarding the doctor advice.. Don't place all your confidence in what they have to say. What I mean by that is that they don't have ALL the answers..they don't know with 100% certainty your Mom's chance of long term survival (though your Mom is young!)... it is better not to promise than to mislead you in this way. They are doing the best they can.. and then we hope and pray for miracles - that through medicine and prayer your mom recovers.

Love your Mom.. I pray your words bring healing to her and that your love gives her strength. Our Mom's need our love, presence, peace and faith.

Bless you and your family.
Katherine
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Katherine
California

mommysgirl · Posted: Tue Sep 25, 2007 10:46 am Post subject: Katherine

Thank You so much for your words of encouragement. I try very hard to just "be" there for my mom. It is only when she starts asking the really hard questions that I feel very uncomfortable being the one to answer them. This sounds really bad but more times than not I just kinda play dumb. I may know the answer to her question but I sometimes say I dont know or that I am not sure and she should ask her doctor. My siblings just think that I am wrong because I have just always supported what my mom wants and how SHE feels. My sibling have said to her that if she gives up the fight against cancer that she is giving up on us kids, and I have never seen it that way. I feel my mom should do what SHE thinks is right for her. My siblings feel she should do what THEY want. Being in the medical profession I guess I have seen what poeple have to endur to fight cancer and it is not pretty, and I know that if it was me I would want to call the shots as far as treatment. My thinking is that this is her life, her decision, and her body. She should have the right to do what she wants. My siblings look ay my viewpoint as if I would be allowing my mom to give up if SHE decided to end treatment. Ending her treatment is almost a daily topic of conversation with her. And I realize that my siblings also do not understand everything that mom talks to me about because she does not talk to them about all this. I have always told my mom that it was her decision and that I would support her whatever she decides.
Thanks again for taking the time to reply
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mommysgirl

My mom's story
http://cancerforums.net/about7278.html

My dad's story
http://cancerforums.net/about8169.html

Pray4Mom · Regular Joined: 29 Aug 2007 Posts: 48

How challenging it all must be for you... Your siblings are placing pressure and false responsibility upon you - but my sense is, based upon your sharing, that you are the closest to your Mom... they don't want to pressure Mom with her views of wanting to stop treatment so they pressure you to persuade and convince her to fight for her life... Perhaps it might help to encourage your siblings to go to your Mom and share their hearts directly to her. You are an easy target to be mad at - but keep perspective - they are not mad at you; they are afraid of losing their Mom.

Also, the battle of this disease impacts everyone around the person who is sick - but ultimately it is the personal choice of the one suffering as to how to proceed. We just need to love and respect our loved ones for the decisions they make.

It is scary and sad to lose those we love... even when it might be in their best interest to pass on. One is never prepared for this. It is a matter of the heart.

Blessings to you.
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Katherine
California

brainman

Mommsgirl, I am so sorry about your mother's lung cancer and brain mets. I too am a health care professional and took care of both of my parents as the struggled and died do to cancer. In my case, both of my parents put their wishes on paper so it was easier for me to deal with my siblings. I have three comments:

1. Your mother has all the legal, moral, and ethical rights to make her own treatment decisions... as long as she is fully informed by her medical team and understands the consequences of her decisions. The "informed" part IS the responsibility of her medical team and not yours. However, since you are the one with the experience, you can be there at her appointment to ask the questions that your mother does not know to ask or is afraid to ask Wink

I did this for both of my parents... asked leading questions... because I wanted them to be fully informed when they made decisions and I did not want to be the one dispensing medical "opinions" to them. In my case, since I am not a doctor or nurse, opinions are all that I could give. Advice has to come from the medical tell.

2. You can be there to ask leading questions AND to help her understand the information she receives. Again, it is best if she gets her explanations from her medical team. But I found that sometimes their explanations were not understood. It may just be the anxiety and shock level was too high for them to hear their medical teams. But once we going home the "What did he mean by ______?" questions came. "Mid-line shift" for example... a term used by my mother's doctor that my mother did not understand but was rather easy for me to explain to her.

3. You can become your mother's advocate. Maybe this is an all encompassing thing that includes 1. and 2. But I also think it includes standing up to your siblings and defending your mother's rights. Encourage her to make a living will. Encourage her to talk with you and your siblings about her wishes. Talking might in fact help with her depression.

I will keep you and your mother in my thoughts and prayers.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

mommysgirl

Hi Brainman- I am so encouraged to hear that YOU have beaten the odds!! Thank you for your reply. By the way do you know anything about whole brain radiation?? Is it possible that it keeps working for up to 6 months?? I have asked every one that I could and they all so no, that they have never heard of it working that long?? I try to go to appointments with my mom. Early on in her radiation treatments I had to step back a little though and insist that my siblings help out. Radiation was every day, and I soon found myself very overwhelmed. I have a full time job, 4 children, a husband, and a grandchild. I eventually had to make out a calendar in which I insisted my siblings signed up for days that they could take my mom for treatment. Now that she only goes for chemo once a week it would be much easier for me to go with her, but I find myself still trying to stay somewhat distant. I guess my thinking is that I should save up my energy for later when I know she is REALLY going to need me. I also kinda feel that my mom became too dependant on me very quickly during the radiation treatments, to the point that even if I did not see her she had me physically, emotionally, and mentally drained. Sometimes calling me 10 times a day. There were a lot of days that I would get off work and have 3 and 4 voice mail messages from her. Dont't get me wrong I love my mom more than anything and will be there for her but for now I am trying really hard to not get too overwhelmed.
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mommysgirl

My mom's story
http://cancerforums.net/about7278.html

My dad's story
http://cancerforums.net/about8169.html

brainman

Mommysgirl, your siblings do need to help!. You cannot do it on your own and still work full-time, care for 4 children, and keep you own sanity. Good for you... you are standing up for your mother and for your own needs.

Radiation therapy does have a residual effect after the final treatment. However, I do not think it works for 6 months... maybe 1 or 2. The danger of whole brain radiation vs a targeted radiation is that the whole brain is exposed to radiation and is affected by the radiation. Healthy cells might get damaged in the process.

Best wishes.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

In

I've been following your story, And think that you are right. Good for you. Jim is right, You do need help.

Take Care and stay in touch.

Thinking of you Inica
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Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

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pbj11 · Site Admin Joined: 12 May 2007 Posts: 1293

Sending hugs to you for the full plate you were served.

I cannot believe in this day and age that they are treating your Mom blindly without a biopsy. How do they know if it is SCLC or NSCLC? They are treated initially with different agents. Maybe a second opinion is in order.

We were told with any radiation that it could continue working for awhile after it was completed, but I think six months is a real stretch too. More like 4-6 weeks after completion. Don't forget there also is the blood/brain barrier where chemotherapy doesn't touch the brain. Oh duh -- you're a nurse! Sorry. I also think that gamma or cyber knife may still be possibilities if the tumors don't completely go away.

There can be no surgery for Stage IV lung cancer because it is in too many areas by that point. It's systemic and will only come back, so the real tools are chemo and radiation.

I'm glad the doctor didn't put a time frame on your Mom's life. It really stinks when they do that. They aren't God.

You have every right to expect your siblings to step up to the plate and take turns caring for your Mom.

Best of luck to you and I hope she gets rid of these pesky lung infections. They are pretty common for lung cancer patients.

PBJ

brainman

Hi mommysgirl,

I read a reply you made to another member in which you said that your mother has died. I am so very sorry for your loss. My heart goes out to you. You know you are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1293

Please accept my sympathy on the loss of your Mom. It is hard to move on, but we have no choice and must find a new rhythm to our world without our loved ones.

May God bless you during this time of grief.

PBJ

mommysgirl

Thank you all so much for your replies. When I started this thread I thought that I would have more time to post, but I found myself with very little time to even check my e-mails. The last several weeks has just been so busy. First I had to have unexpected surgery and then my mom declining has kept me very busy. I hope to remain a part of this forum and share as much as I can, and give as much support as I can, as others have given to me.
_________________
mommysgirl

My mom's story
http://cancerforums.net/about7278.html

My dad's story
http://cancerforums.net/about8169.html

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