New member..Mom in first round of tests

[tjrasMOM]

Hi,

I'm new here. I'm 37 & Mom is 59. My parents are divorced. I'm an only child of my mom's. I'm married & have 2 daughters (4 & 7) who adore their "Nona". My husband and my Mom are very close. Mom has a wonderful family...94-yr-old dad, sisters, nieces and nephews who are all being very supportive right now. She's staying with my grandpa now, feeling the comfort of being with family. We all live within 10 miles of each other - but Grandpa's house is 5 blocks from mine so it's nice having her within walking distance. Amazing that my 94-yr-old grandpa caring for his 59 yr-old daughter. The family is still grieving the loss of Grandma who left us in 09/05. Just trying to find a way to deal with everything we've been through lately. My mom was treated for pneumonia back in late March. She couldn't breathe & was treated for pneumonia and bronchitis. When she was gasping for air, she went in & demanded a chest xray. Her dr. didn't even do this when she heard how bad she was breathing!! But the radiologist was freaked out when he saw her entire left lung filled. He said she was drowning! She had 20% breathing capacity in her left. It seems since the xray, early May, everything has gone quickly...with many ups and downs. Pleural effusion, thorencentesis with blood found in fluid. Cytology showed no cancer cells, but also no infection. Pulmonary specialist wanted to do a bronchoscopy & take biopsies. When he went in he came out after the procedure and told me "it did NOT look like cancer!...but that we still needed biopsy results to be sure." This past Wednesday she drove herself to the dr. for the results. She didn't want me to miss more work. But when she came in, the first thing he said was that he wished she'd brought family. He found cancer cells in the tissue. Thursday we met with her oncologist who explained it in more detail. Because there is so much inflammation, it was hard to get good tissue for the biopsy, but when they did a brush biopsy, they found "suspicious cells" that lead them to believe it's NSCLC. She is scheduled for a PET scan Tuesday. So, we don't even know if it's originating in the lung, if it's spread...or what stage it's in. All we know is that they found cancer cells. We were really starting to believe that it was some horrible reaction to pneumonia. She has a chronic cough and has been vomiting for almost 2 months. She's lost 25 lbs because she can't keep her meals down. Her spirits are up but she's scared. I feel very optimistic one day and hate the world the next. She was a smoker for 30 years. A very light smoker, but still a smoker. She's also an artist. She feels that she was exposed to many harsh chemicals throughout her life. She keeps explaining herself to her doctors. I've never seen her so humble and vulnerable. She's always been a fighter with an attitude. The hardest part is seeing her fear. I want her to FIGHT & not feel that she's lost already. So many emotions go through me on a daily basis. I just feel blessed to have our family by our side. Wednesday she had NO ONE with her when she got the news that it was in fact cancer. And then Thursday 4 of us went with her to her oncologist appointment & we could barely fit in the room. We become glued to each other when we've gone through this kind of trajedy in our family. My cousins are like brothers and sisters. My 2 aunts are like 2 more moms. We've all been through 3 very difficult losses in this family. There were 5 siblings. Mom's sister & BEST friend lost her battle with breast cancer in 87 (she was 41). Her baby brother died from AIDS in 93'. He was 42. Another sister had breast cancer in 96 but caught it early & is by her side today. =) And then their Mom, my grandma - who was the queen of our village, lost her battle with congestive heart failure in 2005. She was 88 yrs young. Losing Grandma was the hardest on my mom. Mom spent so much time with Grandma. They were both artists. She has even mentioned that the stress of losing her mom could have played a part in developing cancer. I know we shouldn't try to figure out why we get diseases, but I also know this is normal. I'm sorry for rambling here. Just wanted to share with others who can relate.

[fillise]

As one daughter to another--Welcome! I'm sorry you have to be here, but glad you found us if you do.

First, take a deep breath. It is very overwhelming in the beginning. Take it one step at a time and learn as much as you can. You might want to fill in a profile (go to "my profile" and you can fill in your mom's history there) provide a history of her diagnosis. It can help people give you useful information.

Second, ignore the statistics. They are frightening and they are depressing. There are many people on this board who have defied all the statistice. You will find hope here and information for survival.

Third, no one here will judge whether your mother was a smoker or not. Some of us (or our loved ones) were and some were not. Lung Cancer is an evil beast regardless and no one deserves it.

Let us know what the PET scan reveals. Ask any questions. We will help you in any way we can,

Susan

[tjrasMOM]

Thank you Susan. BTW, my name is Tova. I know people won't judge Mom for being a smoker. It's just something SHE brings up to each & every dr. we've met with. I know it doesn't matter. Cancer cause is not absolute. It doesn't discrimminate based on how people live their lives. I guess our family is in shock because we only really know breast cancer. My grandma had breast cancer, but survived it. Then 2 of her 4 daughters got it. One died from it. Each one of the 4 girls, had one daughter. (Does this make sense? My mom & her 3 sisters each had 1 daughter). So, today there are 7 of us women, who do everything we can to protect ourselves from BREAST CANCER. We know that our family might have the gene. My uncle who had AIDS, developed cancer as well. My point is that this is our family's first battle with lung cancer. It's as if we were only prepared for breast cancer. We all are so educated and screened for it. I feel helpless with lung cancer. I don't know enough so all I do is research and read.

My mom is the baby sister. She's also the toughest. Other than a cyst removed, she has had NO health concerns. She's a tough woman -- physically and mentally. She played tackle football with the neighborhood boys growing up and has always had a "no fear" attitude about anything physical. And now she's quiet and reserved. She hugs my girls and I see her eyes fill with tears. It breaks my heart. I'll find the profile page and try to update the information about Mom.

[Ry]

Welcome to the board. I am so sorry to hear about your mom. Once you have all the tests done, you will know what you are dealing with. Give your mom a little time to digest everything- right now she is probably scared to death. Make sure her doctors are willing to fight for her and be aggressive- if not, get a second opinion. Let us know what the PET scan shows. Again, welcome.

Rochelle

[MsC1210]

Hello Tova and welcome

I am so sorry about your Mom's diagnosis. She does sound like a fighter though and that will work in her favour. This is all so new to you all. Give Mom a chance to process all of this information and I bet she will come out swinging and ready to beat this.

Keep us posted and let us know how we can help. This is an incredible site for information, help and support.

Best to you and Mom

Christine

[Andrea]

I am sorry to hear about your mom I too am an only child.

Keep us updated, you will receive great support and make lots of friends here!

[blueeye]

Hey and welcome to the board! It's great that you have so much support but I know that you are in shock. I know what you mean about seeing your Mom so vulnerable.

[Shelley (MLC)]

Hi Tova, and welcome! Wow, what an incredible family you have. It's wonderful that there is so much support for your mom. As the others said, once the tests are all in, you and the Dr's will have a better idea of what they are dealing with. There are so many treatment options these days. please keep us posted an how things are going. Shelley

[pewjumper]

Tova,

I read your story and my heart shattered when you mentioned how 'humble and vulnerable' your Mom is now. My mom was a hospice nurse of all things! She was strong and compassionate and my hero. But her diagnosis scared her like nothing I've ever seen - and my how that hurt to watch. I know what you mean.

Your family sounds so much like mine - a little tribe of sorts. My aunts and uncles are more like parents and my cousins are like my brothers and sisters. We are very, very close knit.

My mom was diagnosed with Non-Small Cell Lung Cancer last October at the age of 41. I am 25. Her own mom died of Lung cancer twenty years ago in her sixties. What a dreaded nightmare it is and I remember very well being where you are right now. I would lose absolute control of myself and be overcome with fear and panic. My heart goes out to you. It gets better. Not knowing was very hard.

I am so very, very sorry you are here with us, but this forum is running over with people who know EXACTLY where you are right now and can help you tremendously. The love and support you'll find here will change your life. It did mine.

And as far as smoking, my entire family smoked. My mom quit the day of her diagnosis and I'm happy to say I've not smoked in almost nine weeks now. We don't judge folks for smoking - NO ONE deserves lung cancer. NO ONE!

So I want to welcome you, offer my support, and let you know you're not alone. Hang around and you'll find the help and support you need from these great people. Your family will be in my prayers.

[Nova]

Hi Tova, and welcome.... I'm glad you found this site...(but sorry that you had to)...It's been a blessing to me. My husband was dx'd in January of this year.

My name is Nova--we rhyme!

I'm sorry to hear about your Mom.

I guess they haven't mentioned what type of lung cancer they think it is yet?

I'm fairly new to all of this myself, but it gets a little less scary every day, especially when you read the inspirational stories that are here, written by people that have shared the very same experiences. They've saved my sanity more then once!

Prayers for your Mom,

Nova

[Adrian]

Welcome Tova, you'll find hope, comfort and empathetic ears here.

your mom sounds like a brave woman, and a good person. Keep us posted.

[fillise]

Tova--When you first hear the words "lung cancer" it is easy to be overwhelmed by the fear. As you mom's diagnosis progresses and you learn more about the desease and treatments you may begin to feel less panicked. I'm sorry your mom is having such a rough time this weekend. There's a soup my mom used to make for us when we couldn't keep anything else down (and many times she has carried it to folks experiencing nausea from chemo). It has just two ingredients:

G Washington Golden Broth (find it in the soup section--it's like a bullion but it has no meat products).

Pastina Pasta (they are teeny tiny stars)--Ronzoni makes some as do other brands. Mostly in the pasta isle, but sometimes in the baby food isle.

Use one packet of broth and 2 tablespoons of pastina to a cup of hot water (can easily be done in the microwave).

Like I said, this can be kept down many times when other things cannot.

Susan

[recce101]

Hi, Tova, and welcome to the LCSC!

...it doesn't look good...

Yes, I've heard those words too, from my pulmonologist as well as my thoracic surgeon. They must teach that line in med school. I didn't really expect the inside of my chest to be a thing of beauty, but it would have been nice to hear something a bit more individualized and positive!

To his great credit, my terrific oncologist has never said anything like that and has never offered me any of those depressing statistics which may have value for researchers or the folks who decide what Medicare will and will not pay for but are meaningless at best for the individual patient. Instead, we talk about how I've been feeling since the last visit, the specifics of my condition according to the latest scan and other info, whether we should continue with the current treatment or consider something different, things that help me feel like a partner in my own treatment together with him and my chemo nurse.

After your mom finishes her initial tests, and the cell type and stage are known, and a treatment plan is in place, it should be a lot less hectic. Wishing the best for you both, with a bunch of Aloha headed your way!

Ned

[tjrasMOM]

Thank you everyone for all the support. I knew I'd find support here, but I'm truly touched by all the responses. I typed this very long (probably rambling) message & then this wonderful, loving spirited computer of mine flashed some small window & suddenly the whole screen was gone. That's a sign that I was a getting too chatty. =) My computer was telling me to make it short & sweet. Basically I was explaining my frustrations with the 1st dr. we dealt with. Her inexperience was annoying & frustrating. She gave Mom the news, "it doesn't look good" on a late Friday afternoon. The Friday before Mother's Day. Up to that point, Mom had many days trying to get in to the dr.'s office only to be told that she was out to lunch, that Mom needed to come back next week, etc. And this was when Mom couldn't breathe & the antibiotics & inhalers weren't working. It seemed to go on & on. And then once we found out it was something much more serious, (because Mom finally demanded the chest x-ray). I wanted to strangle the incompetent doctor who was too busy to realize that Mom's conditions were outside her box of medical knowledge. Internal Med dr's work within a box. If she had listened to Mom, she would have moved quicker & sent us on to the specialist sooner. It felt as though we were waiting for weeks to move forward each time. Results were given on Fridays and for the past 2 months it seems as though we spend every weekend waiting for results or to take more tests. I know a lot of this is normal anger because we want our loved ones to receive special treatment. Thankfully, the Pulmonary specialist and oncologist have both taken her under their wings and given her that special, human touch.

My mom has a hot Italian little temper when it comes to protecting me or her own parents. But she doesn't fight for herself or what she deserves. That's where I feel I need to come in now. I don't want to be overbearing, I just want to make sure she is treated fairly, gently, compassionately, respectfully, etc. I also don't know what's in store for us. The pulmonary specialist said that he wouldn't operate because if it's all in her lung, as the x-ray shows, he said it would spread too quickly. Has anyone else had any experience with inflammation? I mean, her whole entire left lung is swollen they said. There was so much inflammation during the bronchoscopy that this was why it was hard to get good tissue for the biopsies. They said it would be radiation. And I'm sure chemo. I imagine they would start right away????? I've learned so much just reading everyone's profiles. I know what chemo names to listen for. My friend works in the Rx industry & she said that Iressa is a very successful med out there now. But some doctors won't give it.

Has anyone changed their eating -- like started eating raw foods, etc.? Has anyone else dealt with the vomiting? Is this is a common symptom?

[blueeye]

Hi again. I forgot to mention that when Mom finally confessed to me what was going on, she said that she had had some vomiting along with the SEVERE SOB. That stopped once we got to the hospital, on some O2 and intense radiation that shrunk the neck node practically in front of our eyes. Could have also been from the electolyte imbalance that can go along with SCLC.

Of course now she has vomiting from the chemo.

And good for you for being such a concerned and vigilant daughter. I'd like to think that I am one too. My Mom's poor doctors and nurses don't stand a chance since I work at the hospital and can stalk them as needed! I did it with my Dad's nephrology team and now I've moved on to the oncology department.

[dscherer]

The day my mom told me she had lung cancer is a the day my life changed. I have had the whole range of emotions, all of which we are entitled to. I understand your feelings but you are doing a great thing by collecting info.

My mom is a very strong and independent woman but when she got sick it was very difficult to take it all in and there were times she was just to sick. I researched and asked questions. I made sure she got what she needed even if I had to ruffle some feathers along the way. I am glad to hear your Dr.'s are better and supportive. You want a Dr. who is going to fight right along with you. My mom's Dr.s laugh when I come in each time with my list of questions but they have told me how great it is that I do that.

Keep strong and believe. This site has been a god send to me. The info that people share from their own experience makes this journey a little easier.

Even my mom's Dr told me to ignore statistics. Ask questions and never be afraid to come to this site and share your feelings. You are NOT alone.

If you ever have any questions feel free to PM me. As a daughter I know how you feel.

My prayers are with you and your family,

Dana

[fillise]

Tova--Don't waste time. Find your mother an Onc. who will listen and who will talk! I feel very fortunate that the physician's assistant (my mom's primary care physician had just left and they assigned her to a PA until the new Dr. came in) who my mom saw was a little b***h about getting my Mom into her tests and scans when first idagnosed. It in December and everyone wanted to wait until January and she was saying "no--we will do this now!" Mom would have had her biopsy the day after Christmas (instead of the day after New Year) if ANYONE had been in town that week (I know, the PA called every dr she worked with). From reading a lot of the stories here, I think she saved my Mom and good month of worry and tumor growth by refusing to watch and wait. I'm very thankful.

A lot of people do seem to get relief pretty quickly from some of their symptoms after treatment begins.

Susan

[Maryanne]

Hi Tova and welcome here.

You certainly received many resposes and support here.

We just have to wait and see how the CT comes out. Once they find out exactly is it is LC or where it originated from they will start a treatment plan. She will start to feel better once they start treatment.

Iam so glad she has so many around to help her get through this. I know how scared you are, we have all walked in your shoes.

Keep us posted on her results and progress. We are always here to answer your questions.

Where are you from? Maybe someone here can give you a name of a good Cancer Institute in your area. But she does seem find with her Onochologist and Pulmonary doctor so that is good.

You will get through this. Give your mom time to adjust to the news. She will put on those boxing gloves and start to fight. She has you and so many in her corner.

Also Tova and this is very important, LC is NOT necessarily a death sentence. There are so any treatments out there. If one does not work there is always another.

Hang strong! You will get through this.

We are always here for you 24/7

Maryanne

[tjrasMOM]

We met with the oncologist yesterday. He read us the PET scan results:

Non small cell lung cancer, Adenocarcinoma, stage IV, 6 nodules found...2 in pleura space, 2 in lymph glands in between lungs, and 2 in adrenal glands. Chemo starts next Thursday. Carbo/Gem for 3 cycles. 1 X week (9 weeks) and then we reassess. I'll update the profile to show this information. Today Mom called me and asked if she could come over. Then she asked if I wanted to go shopping for hats and scarves. She's decided that she doesn't want to do wigs in the summer. =) Too hot. So, we picked out 6 GREAT hats....1 for every occasion. And a couple light airy scarves. Her spirits are so up that I forget to be scared. I love her so much. We have so much fun together. I know we have a big week (and summer) ahead of us. Our family has a summer cabin on the American River....I asked her oncologist if we could take her up there on the 3rd week of cycles when she DOESN'T get chemo (3rd week is her week off in order for white blood cells to regenerate). He said if Mom wants it, we do it. We'll take it one day at a time. Today was a good day for me because I laughed and smiled with my mom. I'm hoping I made HER laugh enough and smile enough....I think we're both feeling optimistic about what's ahead. =)

[missyk]

Hi Tova and welcome...

I was smiling as I read the last update you posted...it reminded me very much of my mom and I shortly after her diagnosis. Actually, much of what you've posted so far has reminded me of her, her family, and our family...though there are three of her children, I'm the baby.

My mom's family has also been dessimated by cancer...there were 8 children, there are 4 left...all died of different cancers, and two of those surviving have been treated for cancer. I know your feeling of fear about that one!

I'm glad to know there's a treatment plan in place and that your mom is getting back in the fighting spirit. Mom told me many times that the hardest thing was sitting around waiting; that all she wanted was something to DO about it.

You and your family will be in my prayers for a wonderfully successful treatment!