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Mom diagnosed with inoperable lung cancer

kimmo
Posts: 5
Joined: Sep 2003

Hi - I am from Canada - My mom has recently been diagnosed with inoperable lung cancer. The cancer is in her left lung and has spread to local chest lymph nodes. She is going for a bone scan next Monday and from there, I guess she goes on to the cancer doctors. Of course, we, her family, as well as her, are now living in a totally different and unfamiliar world. What scares me the most is the pain she will suffer - I don't know if I am strong enough to watch her go through that. I don't know what I am looking for through this chat line - I guess I just need to know what I should be doing, if there is anything I should be researching for her, - basically I just don't know where to start and would appreciate any comments/suggestions on what to do. I do not know what type of cancer she has yet - I guess we will learn that from the cancer specialists - so far she has just been to the lung surgeon, had a biopsy and that is when he told us that it is in her local lymph nodes and that it is inoperable. Thanks.

tomsbc's picture
tomsbc
Posts: 19
Joined: Nov 2002

KIMMO, Has your Mother had a PET scan? If not, you might want to talk that one over with the oncologists. I was diagnosed with the same thing. Mine was inoperable due to my lung disease, but it also had not spread. I have had the 6 weeks of radiation plus 2 - 6 week chemo treatments. The first was just carboplatin due to an allergy to taxol, the second was carbo and gemzar. I had esophagus pain from the radiation but it wasn't all that bad. Just difficult to swallow things. About 6 months after the radiation I developed tissue edema from the radiation in my left shoulder, that pain was severe and immobilized my left arm for 2 weeks because of the pain. They treated me with prednisone and it got rid of just about all the pain. I still notice it, but it's very tolerable.
I know my tumor has shrunk from 3.5 cm to 2.8 cm, and the last PET showed a large decline in metabolism in it. I'm scheduled another CT the end of this month, but so far I seem to be holding my own against it. They tell me that they can't see the tumor because of the radiation scarring, and they won't commit to telling me their reading on the status of the tumor except to say I'm doing great for what I've been through.
My cancer was found 1 year and 26 days ago it was 2.5 cm at that time, so I just keep the fingers crossed. I hope your mother can be treated, and if so, I wish her well.
Tomsbc

kimmo
Posts: 5
Joined: Sep 2003

Hi Tomsbc - thank you for replying to my message and I am sorry to hear of your struggle and the pain you suffered, but I am glad to hear you are holding your own. I hope it continues that way for you and will keep my fingers crossed for you too.

My mom has a significant amount of cancer in her lung. The doctor felt it has probably been there for about a year already. However, I do not know the size of the tumor in cm - although I do know it is rather large.

I do not believe she has had a PET scan - she has had a CT scan - could you explain a bit about a PET scan and how it differs from the CT scan?

Since we have not yet seen the cancer specialist - we do not have any idea as to what kind of chemo treatment she will be receiving. We do know that she will be having both radiation and chemo treatments. I don't know what the cancer specialists will be like - but it sure seems that every doctor we have seen so far does not offer much information - we have to pry for it and even then they are cautious as to what they tell us. I know that my Mom will have a real battle ahead of her. It is so hard to know what to ask the doctors as we have never been down this road before - so how do you know what steps to take.

Again, I thank you for your reply and may need to "talk" with you in the near future when I know more, if that is ok with you.

tomsbc's picture
tomsbc
Posts: 19
Joined: Nov 2002

kimmo, The PET scan is an expensive one and it's hard to find locations where it is done. It is a means of viewing tumors in the body by injecting a radioactive glucose into the bloodstream. The particular sugar is attracted to cancer areas and can be pictured on a machine simular to the MRI. It will show locations of cancers and how active (rapidly growing) they are. They have said that when used with the low dose CT it is proving to be the best way of discovering and pre-diagnosing new and small cancers.
Tomsbc

tonetta
Posts: 1
Joined: Sep 2003

my mom was diagnosed with nsclc on 7/01/03 and given six months to live with no treatment. She decided for quality of life. she is also inoperable. She is 78 years old and healthy, except for this nasal and coughing of mucas. She is awaiting to hear about a blockage in her leg that they have now put her on blood thinners for. I hope that you get good news.

kate218
Posts: 5
Joined: Sep 2003

Hi,
know how you feel. The blood drained from my face when we went to the first Dr. My Dad is at Memorial Sloane Kettering in NYC. There is a lot of hope there. Write down all of your questions. Sometimes you don't want to ask because you don't want to hear the answers. My Dad has small cell, which can't be operated on. The lungs seem to have responded to the chemo well, but it grew back on the liver in 2 months time. Look for clinical trials. My Dad started one ,but it was too harsh for him. Go for another opinion. Good luck to you.
Kate.

cbecker
Posts: 89
Joined: Sep 2002

Kimmo, there is alot out there so do not despair yet. My husband had squamous cell of the throat last year. With forty radiation treatments the tumor was gone unfortunately this year it metastasized to his lungs, he has 15 tumors in his lungs some small some large. His chemo he was on was cisplatin, taxol and 5FU it was a trial, the 5fu brought back radiation recall to his throat so just received taxol and cisplatin. Unfornately he quit responding to the chemo. Now he is on another trial with the new drug Iressa. The results from studies have been pretty good. The side effects are not as bad as the other chemos. So far he his feeling better. He went thru hell for one year and one half. There also is a new process in Texas called radio frequency ablation. So search the web and you will find lots of things. The differenc between a ct scan and pet scan it in a pet scan they put some sort of sugary substance and since cancer feeds on sugar it will light up where the cancer his in there body. Just a short version of it. more detailed then ct scan. Have a brain mri and check everything. My husbands is inoperable but lots to research. Good supplements and nutrition help too. Can get books on supplements and nutrition to fight cancer. God's speed, Candy

bobmc's picture
bobmc
Posts: 49
Joined: Nov 2002

Hello Kimmo;
So very sorry your mom and family are going through this. This truely is such a terrible disease. I'm a 27 month survivor of stage IIB, NSCLC, squamous type. My left lung was removed on 5/2/01 and I do understand what your going through. The feelings of being helpless and having no control as well as all the waiting can drive us nuts. It unfortunately is part of the disease as well as the shock, crying and why me attitude. No ones deserves cancer but we do have to deal with it.
Iv'e found that I needed to take a crash course in understanding it and I used the net for that. Like I assume your doing. I needed to understand types, stages, treatments, etc. it just helps to know. Beware, of the odds though, they are dismal for lung cancer but know that there are SURVIVORS of every stage and type. Kate, said it and I agree, write your questions down before you see the doc's ( my wife did this for me ) and by all means whenever you can get second opinions. It's real important to feel as comfortable as you can with your doc.'s.
Iv'e also grown closer to God in the last couple of years. Many times all we can do is put one foot in front of the other, do what the doc says and leave the results to God. Hope this helps, I can be reached here @ACS,at rmccu37700@aol.com or my favorite @lungcancersurvivors.org ( boards )if you want to talk.
God bless, be well and your mom & family will be in my prayers.
Bobmc - NSCLC- stageIIB- left pneumonectomy 5/2/01 -" absolutely insist on enjoying life today"

9053
Posts: 2
Joined: Sep 2003

Hi-I live in California. It sounds like I have the same thing your mother has. My cancer is in my left lung also and I have a tumor in my chest (lymph node) I went thru chemo and radiation at the same time. All you can really do is be there for her.I'ts been almost 2 years in couple of months. I also found out a year ago I have breast cancer (right breast) and had surgery to remove it. But you know I'am still here. Just keep the faith .Tell your mother not to give up the fight.

momof5
Posts: 16
Joined: May 2003

Hello, KIMMO! I'm Gina. My mother in law was dx about 2 months ago with a tumor in her right lung and a lymphnode tumor in her chest-neck area. She went through radiation and is scheduled to start chemo in 2 weeks. She is 65. The radiation has just wiped her out and she is so short of breath that just walking to the restroom is a lot of work. She is so fearful that I think it is robbing her of strength and the will to keep fighting. When you say that your mom is inoperable, I am surprised... I just thought that they would use the chemo and radiation to shrink the tumor and then operate. My family is very quiet about everything, it is very difficult to get any information. But without it, it is hard to know what to do. How do you help your mom in just the day to day living and fighting? I want to help my mother in law however possible. I feel so helpless.

kimmo
Posts: 5
Joined: Sep 2003

Hi Gina - I am terribly sorry to hear about your mother-in-law. My mom is 66 years of age. She was dx July 25 with lung cancer. She is stage 3, non small cell lung cancer. The tumor is in her left lung and is very large (8cm). The cancer is also in her lymph nodes on the left side of her chest. She will have both chemo and radiation, but has not yet started treatments - seems like all we do is wait and wait and see Doctor after Doctor. The Radiologist has told us that even if the tumor shrinks with treatment, it still will not be operable. I guess it has gone too far already. I am so afraid of what the treatments will do to her. She says she is just worried that she will not be able to handle the treatments. My worst fear is seeing her in pain and suffering. I spend as much time as possible with her and will be by her side every step of the way. She has a great spirit and lots of faith. She seems so much stronger than myself or my 3 brothers. My mom is my best friend and I have so much sadness in me, it sometimes seems like I will never get through this. I have cried many tears and believe me, they come at any time without warning, and I know there are a lot more to come. All you can do to help your mom in law is to be there for her. Hug her lots (I know my mom loves a hug) and let her know how very important she is and how much she means to you. Mom and I talk about her cancer, but most of the time we try to talk about anything other than it. Make the most of every day and encourage her every day. I believe that cancer makes us appreciate life in the way that we were meant to appreciate it. Your family must try and talk about this with one another - it helps to get you through it. I know it sometimes seems easiest to keep it all inside - but that will not be good for you or your family. If you need to talk, please feel free to email me at kcdeals@hotmail.com.

phankins
Posts: 1
Joined: Aug 2009

She was dx in March 09, after several months of testing... which we thought would never end. Finally we were told that she had a tumor in her left lung 5cm, the cancer had moved to her chest wall and also was in her lymph node abouve her collar bone. Mom was given the taxol once every week for 7 weeks, while having radiation 5 days a week for those 7 weeks. She is now having chemo once every 3 weeks. We had anpther scan completed in June and it showed the tumor had shrunk more than 60% also her chest wall and her lymph nodes were all clear. She started her chemo once every 3 weeks and I have watched her over the last few weeks become worse and I am not quite sure how to deal with it all. Her pain has gotten so bad that she just lays in her chair or bed all day. She is having pain in her legs and the left side of her chest. We went to the doctor yesterday and her red blood count was 8, it should be a 12. She can't breath, and get out of breath just talking on the phone. I let the doctor know about the pain and he prescribed morphine 15m twice a day along with her current pain meds taken in between every 4-6 hours as needed. Also they did a chest x-ray and they are not sure if it is the tumor, or from the radiation she had or if she has pneumonia. They gave her antibotic to help just in case. I am not sure where to go or what to ask to see if there is something else we can do. Can someone please help? I am not sure if her disease has metast. so where do we go from here??????

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