Mother newly diagnosed

[Guest CindiB]

Hi,

My name is Cindi. I am a 43 year old only child, who's wonderful 66 year old mother was just diagnosed with NSCLC mid October. We had been seeing her regular MD for eight months prior, he had diagnosed her with COPD without ever doing a chest x-ray. She had not had a chest x-ray for three years prior to becoming ill. I watched my intelligent,independent, happy mother go steadily downhill. Turning into a near invalid, barely able to go to the bathroom without nearly coughing herself to death, and seeing this quack every two weeks as he loaded her up with more and more asthma, and allergy drugs. I finally insisted he refer her to an internist who immediately hospitalized her. Her left lung is completely consumed with tumor, and the tumor has grown considerably into her bronchial passages, causing the coughing and reccurent pneumonia (which quack dr assured us she did NOT have) and bronchitis. We've had laser surgery in an attempt to open the bronchial passage so that she could more easily breath, which failed due to the tumor being completely in control of the lung, and very little lung left. We saw an oncologist on Oct 27th at which point she was again hospitalized for tests and the lazer surgery. CT scans and MRI's show no mets to the brain or other organs, however she does have a fairly large mass in her neck, and lymph node involvement. She is currently undergoing radiation, first treatment was Tuesday of this week. However they are only doing radiation of the chest and upper abdomen, and nothing is being done about the mass in her neck. Her dr has not 'staged' her although I am sure she is IIIB or IV. He also has not given us definitive answers regarding type of cancer, although it is NSC and not squamous cell. How pushy should I be in getting this information? His answer is always that it does not matter because treatment will be the same regardless. He is not reccomending chemo at this time.

Any advice? What can I do to help her?

I am staying in her home with my husband and children in order to care for her. She is coughing continually, even with nebulizer every three hours, and miserable. She is taking prednisone, tessalon, plus the nebulizer, asthmacort, her blood pressure meds, and diuretics, as well as an intidepressent and ativan for stress.

God bless

Cindi

[Don Wood]

Cindi, yes, be pushy! Be your mom's advocate. Your mom is too sick to fight the system herself and needs someone to push for info and treatment for her. Soulnds like you are doing the right things. I think your mom is going to cintinue to cough hard as long as the tumor is filling her lung. You might want to get other medical opinons, too. Don

[kimblanchard]

Cindi,

You must ask for a copy of every test run to get as much information as possible. It is critical to be the advocate for the patient with these doctors. I am glad you have come to this board because there is so much knowledge and information here from people who are going through this.

Blessings to you and your dear mother,

Peg

[Guest CindiB]

Thank you both for your responses. Even though I am not a 'wallflower' type person it's difficult to be pushy with some doctors, as I'm sure you well know. We have an appointment with her oncology radiologist on Tuesday. Should I ask him for copies of her CT etc? Or should I call her oncologist and request from him? We won't be seeing the oncologist again until after we are finished with radiation. I guess this is SOP?

Her oncologist has a great rep, and seems to be quite competent. But he does not have a wonderful bedside manner. It's hard to pin him down for answers to questions he doesn't seem to want to answer.

thanks very much, and I'm glad to be here to, I am so thankful that this board is available for so many reasons.

Cindi

[Donna G]

Welcome CindiB, They have given good advice, you can get copies of your Mom's reports ( with her signiture) , getting a second opinion can make you more comfortable where you are or educate you on other options. Keep us posted Donna G

[Cindy RN]

One thing you can do that will be easier for you to get the answers you need. Write down the questions you have and next apt. tell the Dr I need a few min. for some questions. Then ask them. He/She will either answer them or say "I'm to busy" In that case get all the copies of everything and find another Dr.

[kimblanchard]

A good doctor will try to answer any and every question you have. I know sometimes it's hard, but be straightforward and diligent. Even if you don't understand or totally "get it" the first time the doctor says things, then you tell them to say it again. If the doctor makes you feel uncomfortable or won't answer the questions to your satisfaction then it is definitely time to find another one!

Best to you.

Kim

[Andrea B.]

Cindi,

Sorry you have to be here! But welcome. My advice to would be to be very pushy and insistent!!! Get copies of medical reports, bloodwork, etc. If you ever have a question, ASK. You must be your mom's advocate. My mom has told me numerous times she is too weak to research, etc, so my dad and I have taken on that role for her. If she has a symptom, I come here for questions and then I present them to her oncologist. There are several times that I bring something up and her doctor hasn't heard about it.

Also, get a second opinion. Even if you are comfortable with her oncologist. This is something we did and it helped rest my mind that we were going in the right direction.

I have never been the pushy type, but I tell you this awful ride has made me very pushy with my mom's doctors. It is her life at stake!!

I am wishing you all the best.

[cathy]

Hi Cindy,

I would get a second opinion. I never liked my dads onc. My mom and dad really liked him because he would take the time to talk to us, however I felt all along he was not doing enough. When dad was first diagnosed his response was " well, your 70 and have lived a good life." Anyway, I think you need to be comfortable with your doctors. Dont let them intimidate you either. My dad's pulmonologist told me once that it is unfortunate but we all have to be proactive with our own health care. Scary isnt it?

[Guest CindiB]

Hi everyone,

Thanks so much for your kind responses. We meet with the oncology radiologist tomorrow and have a list of questions for him. I am not comfortable with the fact that we will not be seeing the oncologist until treatment is finished. Is this normal procedure? Should I call him if the OR can't answer all of our questions?

My mother is having a lot of trouble coughing, but has been put on compazine for the nausea, which began three days before radiation treatments. It's helping some.

How soon before we see side affects from radiation? Today is our fifth day. It would be easier somewhat for me, if I could let her know that what she is feeling either is, or is not as a result of the treatment. She is very iffy about treatment, and keeps mentioning letting 'nature take it's course" . I think the only thing forcing her to go through with the radiation is the fact that she cannot breath, if she could just lie down and die , she is so exausted after eight undiagnosed months of illness, that I believe she would. It's very hard for me to keep her morale up. Any suggestions? I want her to WANT to live.

thanks

Cindi

[Don Wood]

Does your mom normally have any hobbies or interests? My wife sews and when she could get back to the sewing, limited though it has been, it helped lift her spirits. We go out to eat occasionally just to get her out and about. Try to get your mom focused on something she likes besides herself, as hard as that may be. Don

[Guest CindiB]

Thanks so much for the ideas. My mom is an avid reader, crochets, does cross stitch, crossword puzzles etc. She has been so sick for so long, and is so short of breath now, that she can't concentrate enough even to finish a book. Going out isn't an option, she barely makes it to radiation and sometimes even after having a breathing treatment an hour before leaving, she has to use her emergency inhaler before coming home. It's very discouraging, for all of us. She just feels terrible. So hard for an active person who can suddenly not even participate in her grandchildren's activities. She's pretty much down to watching tv. I have to stay with her while she showers, the humidity and the activity makes her have horrible, never ending coughing spells, so we don't shower unless we have to.

Prayers appreciated.

While I am not posting in reply to other messages yet on this board, everyone please know that I am praying for you all.

Cindi

[karen335]

Cindy,

Prayers to your mom, you and family. I wish there was something I could do or say to make it easier for you. It is so hard to see a loved one be sick and you feel so helpless, because there is nothing you can do to ease their pain or symptoms. God be with you as you go through this trying time. Keep the faith and put this in His hands, He hears our prayers and He does heal us.

God Bless

Karen

[Guest CindiB]

Thank you Karen. I've been through some really rough experiences in my life, but this is the worst. I burst into tears at the slightest provocation and very often without one at all. My mother is a wonderful amazing lady who has raised seven children, even though she only actually gave birth to one, me. She has always been there for anybody, family, friends, strangers, who needed a helping hand. Suddenly all those people have disappeared now that she is the one that needs the help. She doesn't even have enough life insurance for much , if any of a funeral and worries about that constantly. Right now she is much more concerned, as always, with others than with herself. I keep telling her, she has to fight this thing. I don't know that she has the energy anymore. The diagnosis was SO late in coming. I know you must know the frustration that I feel, when she has these major coughing spells, and she's had cough meds, tessalon, breathing treatments and there is nothing more that I can do than hold her hand and rub her back while she struggles to breathe. It's horrific. I never thought my faith in God could be so shaken. I had a pretty hard time when we lost my sixteen year old niece six years ago to cancer. And this seems to be really slamming my faith even more, at a time when I so desperately need it. I guess that's always the way.

Blessings,

Cindi

[Fay A.]

Depending on its location, the neck mass could be contributing to the severe coughing episodes. When you meet with the Radiation Onc tomorrow you might want to ask him/her about the neck mass (is it a solid mass, enlarged lymph node, or swelling because of tumor in the lung?), and then ask if there is anything that can be done for it.

I am so sorry that you have need to be here.

Best Wishes,

Fay A.

[Guest CindiB]

Hi Fay

The neck mass is just above the collar bone and to the right of her trachea, a handswidth or so. The coughing was horrible before the neck mass. Her tumour has grown into the bronchial tubes.

thanks,

Cindi

[berisa]

Cindi, so sorry to hear about your mom's situation. Pnuemonia could be a serious disease that causing death, one of my friends is doctor and he told me that we cannot ignore pneumonia because he said, cancer will not cause immediate death but pneumonia could.

In your mom case, pnuemonia is caused by the tumor that both must be treated as soon as possible. My Dad was suffered from Pnuemonia as well while being diagnosed of LC, his pneumonia was treated first and while pneumonia was started to recover or in stable (NOTE : pneumonia is impossibe to be treated totally as this is caused by the tumor), then his doctor started to treated the LC with chemo. So what i guess is your doctor is attempting to treat the pnuemonia first to minimize the immediate danger and trying to ease the cough and shortness of breath, and then he could start the chemo. Chemo also brings side effects that your mom may not bear these at this moment.

Maybe once your mom's pneumonia is getting better treated, he will start the treatment ASAP. Hang in there.

[Guest CindiB]

Could be that you're right, thanks. She's had pneumonia for so long, I'm not sure she remembers what it's like not to have it. Concerns me that she is no longer on antibiotics, it seems she always gets much worse when they take her off. I'm going to ask about that this morning too.

Thanks everyone for the encouragement,

Cindi

[Guest CindiB]

Saw the radiation oncologist today, news wasn't great. As I already knew my mom's breathing is much worse, he thinks the tumor is probably continuing to grow, but doesn't seem to concerned about that. We are only in day six of radiation. He says she is classified as 3B but should be 4 because he believes that even though no mets are showing in organs, (but in lymph nodes, neck, ribs (we didn't know ribs until today) etc) that there are minute spots of cancer probably in distant organs that can't be seen with the scans as of yet. He also said that he is treating the neck and throat with radiation as well as the entire chest cavity into the upper abdomen. He says massive doses of radiation but also says she seems to be tolerating it well. Before I could even ask about the possiblity of mouth sores and the difficulty in swallowing that we knew were a possiblity he'd already given me the miracle mouthwash and said she'd likely need it by this weekend. Also told her to start drinking ensure boost, etc twice per day so I'm soaking up the recipes here. She is despondent and resistant to any suggestions I have of involving herself in something (crocheting, embroidery etc) other than struggling to live day to day. Should I continue to push her to do something like that?

OFf to make my first Boostshake.

take care all,

Cindi

[natalie]

Cindi,

I just wanted to respond to say I can completely relate. My mom sounds like she's in similar shape that your mom is in right now. She loved to watch movies, do crosswords but now she can't concentrate so she just sits there and watches a little bit of the news or sleeps. Sometimes I catch her just staring off into space. His morale is lower now and she's not as much in a "fighting" mode...my mom is someone that before her diagnosis, loved life and enjoyed being alive, could find positive in everything. It just breaks my heart. I'm an only child too, so I find it hard to not have a sibling to help me take care of my mom or be there emotionally feeling the same thing. Cancer has got to be one of the worst diseases out there...the treatments are just horrific. I'm a little bit glad my mom is on Iressa, ask the doctor about it since your mom is feeling a bit weak...I hate to see what the chemo is doing to my mom and I'm hoping the Iressa lets her get back her energy. I was told there are less side effects and it doesn't seem as toxic. Cancer is just so prevalent and I don't know one person that hasn't been affected by cancer some how in their lives. They just have to find a cure for this thing! Sorry for venting, I'm just in MAD mode today. I'm mad that anyone has to go through this ordeal. I mad that our mom's and people on this board have to be sick like this. It just doesn't seem fair. I hope the best for you and your mom and please know that you can instant message me for support anytime. Remember to take care of yourself too.

[Guest CindiB]

What a wonderful post. It seems that you definitely understand exactly what I'm going through. Our moms sound a lot alike. My mother's not doing chemo, just radiation. I wish I could think of something to get her interested again.

If you come up with anything, let me know, and anytime you feel the need to vent please PLEASE feel free.

Cindi

[mhutch1366]

Cindi,

My tumor also involved a large mass in the neck, and ribs. I had radiation concurrent with vp-16 and cisplatin, which killed the tumor (they found on removal) and considerably shrunk it all partially into treatment.

If your mom is lethargic, try a more passive distraction, like renting movies. I lived on rented movies and library books. Humorous movies are great, and humor actually seems to stimulate the immune system.

An antidepressant and/or counseling with someone who specializes in medical traumas might also help. Families are so loving and try to spare the other the burden of being strong, they keep so much to themselves, it helps to have someone to vent to. Ask your doctor or the social intervention specialist at the hospital if they can recommend anyone.

I also had a special friend who "adopted" me from church. The visits helped, making new friends was an 'upper'.

Blessings and prayers for your and your mom.

Tell her to put her worries in God's pockets.. they are deep enough.

She has enough to deal with without worry.

MaryAnn

[Guest CindiB]

Thanks so much Maryanne,

Your story is certainly one to give her hope and strength. I don't understand why they haven't started her on chemo, but I guess it would possibly be too much for her in her condition. So we will continue to pray and hope and fight

Cindi

[Jennifer D]

For those that are doing or have done the radiation, I am right in my thinking that the radiation to the head isn't that bad. My dad just got his first treatment of it and said it was pretty easy, like getting an x-ray. He has like 14 more sessions to go. I am wondering, if they are all going to be easy or when he gets to #15, it is going to be a different story.

He starts the Chemo 1 week after rad ends, does chemo hit you really hard after the very first treatment? (he has 6 rounds of the chemo, 3 weeks apart) Unlike how he was affected by the radiation...

I don't know, I seem less worried about the radiation round than the chemo.

Is silly to think that way.......

[Guest CindiB]

Hi Jennifer

My mother's just now on her eighth treatment. Not to the brain, but massive doses to her upper body. She didn't have any real effects until day before yesterday. Now she has a terribly sore throat, a good bit of fatigue, things don't taste good to her, and she can hardly swallow. Radiology oncologist gave us the 'miracle mouthwash' thanks to this board (THANKS GUYS I read that in an old post) and said it will get much worse before it gets better. We're hanging in, and will continue to do so.

Cindi