scared

rebel123 · New User Joined: 01 Sep 2008 Posts: 6

Mam was diagnosed with NSCLC 3 weeks ago, she is 49. Mets to spine, liver and adrenal glands. She needs to wear a surgical neck brace as she can't support her head. They have told her chemo is not suitable for her but have use radiotherapy to try shrink tumor on upper spine to ease pain which along with meds seems to be helping. They told her yesterday they have discover masses in both breasts as well. The oncologist asked her if she wanted to know how long she has, but she doesnt, shes gonna live her life. She is coming home in 3 days, with support from the palliative care team. I'm really scared as to what to expect. She is in terrific form at the moment and the pain is under control. I'm trying to prepare myself, for whats coming...

brainman · Posted: Tue Sep 02, 2008 3:15 am Post subject: Re: scared

Oh rebel123, I am so sorry about your mother's advanced cancer! She has two types of cancer? I can only imagine how hard all of this is for her and for you.

You and your mother 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 Oligodendroglioma 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/

rebel123 · New User Joined: 01 Sep 2008 Posts: 6

I don't know if the breast cancer is related to the lung but she went for mammogram last year an got the all clear. She is really in great form,no symptoms as long as neck and head pain are managed. The doctor told me today that shes very advanced and gave her about 6 months, but wouldn't tell me what to expect, do you think she will get really sick or if shes really in a good place mentally just keep going the way she is

brainman · Posted: Wed Sep 03, 2008 2:47 pm Post subject: Re: scared

rebel123, it does sound like it is very advanced. Six months is such a short time Sad

. Here is what I often tell people about prognosis. If my original prognosis had been right, I would have died at least 5 years ago. I do like to know my prognosis but only in order to be able to prioritize the things that I still would like to do with whatever time I have left. After that, I try to just live one day at a time working to achieve those objectives.

In your mother's case, she may not have time to do much. Her goals may be to speak with a friend with whom she has not spoken in many years or to go to a favorite park one fall afternoon. I suggest that YOU be her "dream factory" helping her to achieve those things that she can still experience.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma 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/

rebel123 · New User Joined: 01 Sep 2008 Posts: 6

Thank you. Myself and Dad had a chat to the doctor today and he told us to do whatever we want today because we don't have tomorrows. He said its more likely a few weeks to a couple of months that Mam has left, so she is coming home tomorrow. Dad has always spoilt the two of us rotten even if he coulndnt afford it, he said thats why God invented overtime, so he could treat us. Mam an me are his girls. So we will be happy for the time we have left with her and as you say be her dream factory.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1386

Rebel,

This just breaks my heart to hear of another person with this disease at such a young age. It seems so unfair to me and I'm sure you have those feelings too.

Do what you can with your Mom while she is able. Hopefully the rads will give her some easing of the pain.

Unfortunately nobody can tell you exactly how this will go. There are some general trends we all see as our loved ones decline and I'm sure the palliative care team will have information available for you. Keeping your Mom comfortable is the most important thing. Sadly, she should be making sure she has all her legal paperwork in order and you should be able to get this type of information from the team also. It's always crummy to do this when a diagnosis is made, but most people never think about it until something like this happens.

Be her advocate and be a support for your Dad. I don't know if you live at home or not, but I used to go to my folks house to give my Dad a break from the constant cancer grind and let him talk and stay in touch with the real world a bit. It helps to renew a caregiver's mind and soul.

Very best of luck and keep us posted.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

rebel123 · New User Joined: 01 Sep 2008 Posts: 6

I'm nearly 16 and I live at home with both Mam and Dad. Dad told me not to be strong around him and he had enough strength for the three of us. Hes being really brave.
I asked him if Mam got the all clear last year from the hospital could the cancers have spread this quickly. He just said Mam was our main focus and hed fight that battle soon.
Do you think maybe they got it wrong. They said that its primary lung thats done all the damage and the breast cancer is primary as well. Could they have missed that last year. She went for full check up april 2007 and they said it was a cyst? My mind is working overtime

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1386

Rebel,

Oh good grief -- I had no clue you were 15!!! I'm sorry, my post was directed more at an adult child. I was 47 or 48 when my husband was diagnosed and my kids were much older and into their twenties at his diagnosis. I'm so sorry -- you obviously are very mature, but your Dad is RIGHT. Do not keep this stuff inside around him. He also is looking out for your well-being and needs to know that you're not locking all this up inside. Your father is wise, he is not looking back at what might have been, but is accepting what the reality is today. I know it's hard -- I'm an "old" person and I still had difficulty accepting that I couldn't go back and change things.

Depending on the type of lung cancer and how aggressive it is, yes this could easily have developed in a relatively short period of time. After my husband was diagnosed and on treatment, if his specific treatment wasn't working, we had scans to compare that showed how fast this cancer grows. It can spread like wildfire in no time at all.

Two different primary cancers happen, it's more rare, but it does happen. The lung cancer is the real problem because a lot of breast cancers are treatable -- but there are some that are nasty too.

The problem with lung cancer is that there is no way to screen for it and by the time symptoms occur, it often is very late stage.

I'm so very sorry and we will be here to help you as best as we can. I know you are coming at this from a perspective that is different from many of us, but a lot here are children of the patients, even if they are adult children.

I'm sending you big hugs. I hope you have a good friend or a minister that you can talk with also.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

LizNDale · Posted: Wed Sep 03, 2008 7:21 pm Post subject: Re: scared

Dear, dear Rebel,

I am SO SORRY, my heart breaks for you, I read "I am nearly 16.." and I could barely read the rest through my tears.

God Bless you sweetheart, and your mam and dad. Here I am almost 50, have had my mom for half a century, and you are just starting that best time when you get to really know your folks as people, it just isn't fair.

Please come back back often, whenever you need to, there are so many people here to talk to, to lift you with compassion, to listen to you talk crazy if you want...whatever you need, dear Rebel, we're here for you.

{{{{{{{Rebel}}}}}}}

Thinking of you,

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

Ckim · Experienced user Joined: 15 Aug 2008 Posts: 57

I am so sorry to hear what you are going through.

Your mam is going to worry about you and about leaving you--that's what they do. She will want you to remember her as being alive and vibrant, not as sick and dying, so concentrate on that. She will want to know that you are going to be OK.

You may see and experience some things that you might find shocking--she may get very weak, she may not be able to take care of herself at some point.

Always remember that she is your mam, no matter what.

Although I am much older than you, it is very hard to see my dad suffering. I am literally amazed at some of the comments well-meaning family members will make right in front of him! They talk [u]about[/u] him--as if he isn't sitting right there!

That burns me up! He might be weak, but he is still my father!

My sons are with me on this. They talk to him and joke with him just like always. (They are 18, 20 and 22) The other night, they were joking that they were going to take him out drinking and pick up a girl for him--he raised his fingers to indicate TWO! He wanted TWO girls! Cool

It's just bawdy fun, but it is fun and normal for them and makes him feel good.

That's the thing to remember. No matter what happens, you mam is your mam. Love her, hug her, treat her like you always have (maybe hug her a little more) and journey through this time with her not as a person who is dying but as a person who is living.

One more thing: you might consider keeping a journal. There are things that you will say to one another that you are going to want to remember later. Dealing with cancer and the stress of it sometimes makes us forgetful.

Your journal may be very comforting to you later on.

We will all keep you and your family in our prayers.

rebel123 · New User Joined: 01 Sep 2008 Posts: 6

We all spoke to the oncologist today. He told us that the breast cancer is from the lung, and he is putting mam on tamoxafin? He hopes it might slow things down a little, but it won't do her any harm. He also told us that because the cancer is spreading rapidly througn her bones it most likely wont make much difference.
But good news, Mam is home and sitting inside laughing and joking as she always does. It feels great having her back at home again. The house feels normal. The palliative team have got her pain under control, so she doesnt have any real symptoms, I feel really good tonight.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1386

Rebel,

Now I'm completely confused. Tamoxifen is used in breast cancer, not in lung cancer. I don't know anything about how aggressive breast cancer travels and where it likes to metastasize to in the body.

She may have two primary cancers and is being given Tamoxifen for the breast cancer to slow things down, like you've said. You may want to post your information on the breast cancer forum also because they'd be able to help you too. They'll know where breast cancer likes to travel. I've only seen one case of lung cancer that went to the breast and they wouldn't be using breast cancer chemo to treat it, but I don't know if breast cancer travels to the lungs and bones.

Good luck sweetie. I'm so sorry you are having to learn this much about cancer at your age. I'm glad you have your Mom back home and that she's holding her own. Give her lots of love and hugs.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

rebel123 · New User Joined: 01 Sep 2008 Posts: 6

I've just told dad about this forum and he thinks its a great idea. He explained that its common for breast cancer to travel to lung but not the other way around. The onc. was positive that the primary is lung but its hormone positive, so that drug might help slow things down, Dad got the impression he was willing to try anything... but whats in the spine is moving fast.
Mam is still buzzing cause shes home, its really great

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1386

Rebel,

Well, you learn something new every day! I'm glad they are giving her something they hope will slow things down. I'm even happier to know she is feeling so good about being home.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

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