Daughters' hope for their mother

For the past year our mother had many behavioral changes including weight loss, sleep pattern changes which we attributed to a build up of stress and depression that had been building since the sudden heart attack and death of our father 6 years ago at age 51. Due to unexplainable sleep pattern changes and thus tardiness to work she was let go from her job which in many ways was her her whole life besides her daughters. Well 9 months later, she was still not able to pick her feet up and move onto a new job. She continued to drop weight and complain of depression. Well about a month ago she began complaining of severe headaches that lasted all day and again we attributed this to her stress and depression. After visiting my mom one Sunday afternoon 3 weeks ago due to confusion on the phone I walked in to find my mom having what I thought was a mild stroke. However, 24 hours later in the ER we were notified that she had a lemon-sized tumor in the right side of her brain that had likely metastisized from her lung...of course the last possible thing I thought was causing these stroke-like symptoms. Now we are faced with a mother of 3 daughters (all younger than 30 years old who are hoping that this is not her death sentence). What is the most frustrating part is that while the lesion is large and pressing both against her esophagus and encapsulating her pulmonary artery I believe that God is not ready to take her from us. The doctors have said that due to its position it is inoperable. Has anyone been through a similar diagnosis?? The doctors of course have not given us a good prognosis but other than the brain metastasis that they were able to resect completely she is a healthy 57 year old woman. The doctors fear that her weight (97 lbs) pre-chemotherapy/radiation will be her biggest obstacle. Again, is there anyone out there that was this thin to begin with? We are so scared and young and simply unsure of what questions to ask and what path to take. I would love feedback from anyone who can help?! ~The Castay Daughters

By kallygirlie
Posted April 3, 2008 at 12:12 am
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Hello, I'm sooo sorry you had to find this family but feel luck that you did. I'd simply be lost without the members of this site. My mom also has lung cancer with mets to the brain. both lesions on the brain were removed and my mom was lucky enough to have the lobe containing the tumor removed from her lung. She has always been a tiny women, I've never seen her larger than 115lbs or bigger than a size 3. She handled Radiation pretty well. We have yet to start Chemo, they are allowing her to recover first. It wasn't until 3 days after radiation finished that she found herself getting really tired. She lost 15 lb from depression after the stage iv dx but I'm happy to say that she has picked up about 12 lbs since treatment began. as far as question to ask, start with the test. Make sure your mom has a pet and bone scan done to make sure it is no where else. If anything doesnt feel right, dont be afraid to ask the docs. I'm new on this journey and I still get lost in what I should do so I'm sure others can give you what you are looking for but never give up hope. my prayers are with your mom and your family

By Jolene
Posted April 3, 2008 at 12:15 am
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To Castay Daughters:
First as a mother, I send you a warm embrace as you must be very frightened at what you have been told. I think it is very important to get a second opinion before you move forward with treatment, even if it means someone looking at the test results she has had. Her condition is obviously very serious and you want the very best taking care of her.

When my dad was fighting his battle, I had to hold on to hope in order to just survive each day. I had to hold on to hope in order to help him fight. While having said that, I also had to slowly allowing those thoughts of "what if" into my mind and heart, in order to prepare myself in the event things didn't go as we prayed for.

No case is the same. No result is the same. Take one day at a time and lean upon your faith and your family and friends to see you through this ordeal. Know others will be praying for your mom. Jolene

By 2mmama
Posted April 3, 2008 at 7:49 am
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To The Castay Daughters,
My mom was diagnosed the same way about 6 months ago. She had a seizure and then they discovered the brain tumor and then the lung tumor. I too encourge a second or even third opinion prior to starting treatment.
It is excellent they were able to remove the brain tumor!! My mom had cyberknife but one of the tumors has actually increased in size slightly since then. The brain tumor symptoms have been the worst part for my mom, she hardly notices any problems with her lung.
Have your mom eat several times a day and add weightgain ensure. My mom started to lose weight during treatment and they said they would stop if she got too weak, so she added the ensure, ice cream sandwhiches, etc. to pack on a few pounds. In her case she was still on steroids for brain swelling which helped with the weightgain.
I am sorry you and your sisters are going through this, but its a blessing you have eachother to lean on (Im an only child :(
Blessings and best wishes, Christi

By NurseC
Posted April 3, 2008 at 9:34 am
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Hey Sis,

Just wanted to tell ya thanks for writing about mom and asking other people for thoughts/suggestions. I love you and we will get through this!
Love you!

Cat

By castay
Posted April 3, 2008 at 3:51 pm
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If anyone else gets a chance to read this. I would like a 2nd opinion because the doctors have said this is inoperable. I was curious how do we go about getting a 2nd opinion??? Who do we contact and do you have records transferred? I just didn't know if we inform our doctors that we would like a 2nd opinion or if we take it upon ourselves. Thanks!

Christen

By sktoma
Posted April 3, 2008 at 5:37 pm
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I am sorry you all are having to deal with this but stay strong and pray a lot, you will make it. I know your mom is glad she has great daughters.

You girls need a health proxy or sometimes called an advance directive, so you all can get any information on your mother. Ask around from your friends about other Drs.

Most Dr. invite a second opinion, so do not hesitate to get one and you can tell your Dr. you want another one. If he is a confident Dr. he will not hesitate, if he hesitates, I would change Drs. Call a local medical center or university, they are helpful. It is easy to get medical records, just ask, your mom will have to sign a record release and then tell them where to send them or better yet pick them up yourself and take them to the new Dr.
Also, when you sign all that paper work at a Dr. office make sure you put y'all names on there, so you can be told anything about your mom. The hipaa laws make it a bitch sometimes. As you get further down the road the patient sometime cannot think clearly, that is why it is so important for you guys to keep your ears alert for all information. Never, and I say never be afraid to ask questions, so matter how they may sound. I always have my notebook with me so I can write down what our Drs. say and then I ask to make sure I understood everything correctly. I also have used a small tape recorder to tape the visits, that has been great, because I can listen when I get home. You will be surprised how we misunderstand what is said sometime, and what I hear may not be what you heard.

I will pray for your family and I hope you find out more information. Just hang in there and stay strong, be pro-active and get all the information you can.

Wishing you all the best-Kathy

By 2mmama
Posted April 3, 2008 at 5:50 pm
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I will add to that by saying DOUBLE check the advance directives bc they had my mom as DNR bc my parents didn't understand their options. Im sure the Nurse sister can help with that.
Unfortunatly I cannot give any good advice on finding second opinions. We saw 3 intially and decided on one that ultimatly still wasnt the best choice for my mom. You need to find one that believes in what you believe in. If she wants to fight, you need to find one that is going to aggresivly treat her not just "pallative" treatment. My Moms current doctor was a miracle. If you look at my posts you can read about it. My point to all this rambling is it took us 4 doctors to get here.....just remember that even down the road you feel you could have done something different or "better" just remember there are no wrong decisions when they are made with love!

Blessings,
Christi

By Gweena
Posted April 4, 2008 at 12:17 pm
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I am so sorry to hear what you are going through with your Mom. I am a nsclc victim stage IV and I have a 20 yr old daughter who is an only child, so although it won't be an easy path, please appreciate the fact that there are 3 of you to lean on each other and help out.
My tumor is also on my esophogus and trachea and deemed inoperable. It was easy for me to arrange a 2nd opinion. I asked my onc. to get me an appt at Sloan-Kettering Memorial, and her office kind of took care of the rest, actually getting me an appt and getting my med. records to them in advance. So, wherever you live, go for the best cancer center in your area for a second opinion. They do it all the time but she will actually have to travel and go in person once everything is set up. My results were the specialists in NYC agreed with the 'inoperable' findings of my onc. and thoracic surgeon, but they agreed to work with and consult with my local onc. by phone when necessary, so it is well worth while. They did suggest that I have just chemo first, rather than the combination chemo and radiation my onc. was going to do, just in case the chemo worked the miracle of shrinking the tumor away from the trachea, esophogus, and blood vessels that were in the way. So that's what we did. Unfortunately, the chemo did not work at all. We tried 2 very strong kinds (carboplatin - 3 rounds, and then cysplatin - 3 rounds). After that I was totally devasted, but was referred to a wonderful radiation oncologist who eventually talked me into letting him try to radiate my tumor without burning the esophogus. I did 5 weeks of radiation, and although I lost some weight and became extremely fatigues, the radiation did wonders!!! I could breathe better because he had somehow worked it to take the pressure off my trachea and esophogus. I then felt so good that over the next 12 months, my family took 3 vacations. I thought each one would be the last, but I'm still here. The radiation oncologist said, when pushed by me, that the good effects of the radiation would last around 9 months before the tumor might activate again, but in reality it was 14 months before they saw any activity again. He is my hero, and it sounds like your mother could use one just like him. There really are differences in skill levels among all our doctors and I was very fortunate to find him. I had first refused the radiation, but he called me several times at home and promised he could help me and not have me end up on tubes from burning the esophogus, and he was right. Unfortunately, my cancer is now active again and I can't have any more radiation to my chest (there is a lifetime maximum for any particular part of the body), but I am now having a new chemo called Alimta and it is shrinking the tumor a little. Keep in mind that this roller coaster of mine started 26 mos. ago and I am still here, so please don't give up hope. I almost did, but wonderful friends, family and my hero radiology guy have kept me going. And by the way, I have gained all the weight I lost back (not necessarily a pretty thing in my case), but I tell you that because of your Mom's weight issue.
I don't know what area you live in, but where I am I finally found out that there is a Gilda's Club in my city and I have found it very helpful to talk to other cancer victims. They have separate groups for each kind of cancer and general support groups just for social and mental get-togethers to talk to each other. You find out alot of info that our doctors forget or are too busy to tell us. It is a very welcoming environment for patients, family, friends and an open-door drop-in policy as well as the organized support group times.
You can't go this alone so reach out, accept help, take notes, ask questions, get 2nd opinions, cry when you want to and use any and all life preservers out there.
Also, every time your Mom gets a test done, once she signs the HPPA forms, ask for and keep a copy for your own records. They come in very handy when you choose or need to see another doctor. It also came in very handy when I found out I could apply for Soc. Sec. Disability because of my diagnosis. (And, because I went in there with all my records, I was approved in record time.)
Hope some of this helps, and my thoughts are with you all. It's a very horrible experience, but you can make some lemonade out of her lemons by appreciating every single moment you have with her on this earth, and if you see that she's up to it, talk, talk, and talk some more if she's willing. Don't let a chance of getting to know her better go by. Besides being a great Mom, your Mom is a person and you'll want to know more and more about the non-Mom person if and when you lose her.
Gweena

By castay
Posted April 4, 2008 at 1:14 pm
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I just want to thank everyone for their responses. I spend so much of my time reading others experiences because it brings me so much hope for my mom. This group is the only place that I feel like someone understands what I am going through. I have so much hope that my mom will be able to share her success with treatment one day. For now I will enjoy learning from others experiences. She resides in Atlanta and is being treated at Emory University hospital. The problem for a second opinion is that there are no other reputable cancer centers in the city. I may look into traveling somewhere else for a second opinion if its not too difficult for my mom. Thanks again for your responses!

By amymaura
Posted April 4, 2008 at 2:08 pm
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Hi sisters,

Sorry about your mom. I was 24 when my mom was first diagnosed with lung cancer so I know how scary it is.

When my mom was sick, I went to a cancer support group for patients and caregivers which was really helpful to me when she was going through it (she wasn't so into that, but it helped me!), so I'd encourage that for all of you. General groups can be helpful but there are also two lung cancer-specific groups in Atlanta:

St Joseph's Cancer Center, contact: William Gessner, 404-778-5933.
Emory, Winship Cancer Institute, contact: Rebecca Sizemore, 404-778-5716.

We have a state chapter of LCA in Georgia, and our co-director there was treated at St. Joseph's. Might be a reasonable close-by place to get a second opinion. I know they are also involved in early detection through screening programs, so they have a higher-than-average level of experience with lung cancer.

Hope that helps!

Amy

By catwoman1
Posted April 4, 2008 at 6:15 pm
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Hi Sisters,

So sorry to hear about your mother. My sister, brother and myself have been through a similar situation with our mother. Her tumor was contained to her lung area, but was the size of a grapefruit when the docs discovered it. She was originally told that it was inoperable too, but after doing further tests, it was decided that they could operate and remove the entire lung, along with lymph nodes, heart lining, and part of her chest wall. Getting a second opinion is a great idea, maybe a different doctor can offer more suggestions. Sending hugs to you and your sisters......

By liznj226
Posted April 30, 2008 at 7:25 pm
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I'm so sorry to hear about your mom. My mom is 71 and a tiny 86 pounds (she's always been a petite thing) and her weight was our main concern with treatment also. You can speak to the nutritionist at most hospitals or cancer centers and they will give excellent advice and possibly free samples of calorie and protein boosters. I got my mom a powder from GNC called MassX (used by weight builders) but it's an excellent source of whey protein, calories and antioxidants. It comes in different flavors and she mixes her shakes up in the morning and even uses it in her oatmeal and cereal. Adding fresh fruits is great too. The nutritionist said it was better for her than Ensure. She drinks the shakes along with her regular meals, not in place of them and they don't fill you up like Ensure does.

Mom has just completed 23 radiation treatments and has not lost any weight, still 86 pounds. She also gets chemo once a week. She also uses plastic utensils to help avoid metallic tastes when she eats and if food starts to lose it's taste, try using more herbs and citrus or italian marinades.

My best advice to you is to do a lot of research and ask a lot of questions. As for second opinions, we haven't felt the need for one but we have a great relationship with mom's doctors which is something you really need, and to feel comfortable with them. Your current doctor shouldn't have any problem setting up a second opinion for you and if they do, I'd look elsewhere. Your mom is dealing with her life and it seems like she has a very caring family looking after her. My prayers will be with you.

Liz

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