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Mom was diagnosed today - don't know what to expect

slr4nkh
Posts: 7
Joined: Jan 2012

My mom (53 yrs) was diagnosed today with Stage IV non-small cell adenocarcinoma. It is definitely in her right lung but CT scan showed some masses in her left but oncologist was unsure if they are tumors or nodules from her RA. She does have cancer cells in the fluid around her lungs. She will have a brain MRI and bone scan done Friday and a CT scan of her lower abdomen Monday.

All I keep hearing in my head is the doctor say "Stage IV, no cure, we won't be doing radiation". We've been preparing for this since 1/1/12 when she went into the hospital for what we thought was pneumonia and xray showed a mass 7cm and CT showed later in the lymph nodes. She will start chemo next Wednesday (Carbo/Taxol/Avastin) 6 cycles 21 days apart through a power port. What I can't understand is why radiation will not not be done with the chemo? What does this mean? From what I've read it's used together to treat and kill the tumor. I'm trying to be strong for my mom but I'm kinda freaking out because radiation will not used with chemo and I don't know what that means for her.

Anyone else diagnosed with stage IV and no radiation used? I know that if anything is found in her brain/bones or liver they will do radiation there but why not on the lung? any words of hope, experience or tips for my mom would be greatly appreciated.

dennycee
Posts: 673
Joined: Mar 2011

double entry

dennycee
Posts: 673
Joined: Mar 2011

Each patient's treatment is individualized. You should ask her doctor why no radiation. Your mom needs you to advocate for her and this is a good place to start. It is not necessary to be confrontational, simply ask why. Also, get a second opinion, even if the new doc agrees with your current onco you will have done your due diligence. It is obvious that you have been educating yourself`to help mom this is your opportunity to put your new knowledge to use.

Your mother is lucky to have you. Please consider finding a group for families and caretakers of cancer patients. Having dealt with this issue as a caretaker myself, I found it helpful to share experiences with others who are going through the same thing. Your mom's hospital should be able to help you locate one. Another good website is cancergrace.org- it is monitored by several oncologists, also inspire.com - you can get info about cancers by type and stage by patients, caregivers and survivors.

My prayer for you and your mom is for strength and grace to get you through this coming round of tests. Please keep us updated.

nacst4
Posts: 4
Joined: Jan 2012

my boyfriends dad went in for pneumonia too and was diagnosed with lung cancer. Unfortunately theyre not giving us much hope he cant have the chemo or radiation but were still praying holding out hope. Stay strong i know the freaking out part. Im trying to be strong for my bf but when im here alone a just break down and cry. Hopefully the chmeo will work for you mom. God bless you

slr4nkh
Posts: 7
Joined: Jan 2012

I will pray for your family as well. Hopefully this will be a year of good things.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Sorry to hear about your mom.

We got asked why no radiation or surgery on the tumor... just chemo. The best analogy I could come up for people is the population on earth..... if u believe in evolution.... then we believe that humans came into existance somewhere in africa or asia.... but now we are in all corners of the earth..... even dropping nukes all over africa would not wipe out the human population. Same thing for cancer. Now that it has spread, getting the original tumor is no longer of significant importance.... it is much more important to "save the world" chemo attacks everywhere blood flows.

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

I'm so sorry. I know all of us on this site know how completely tumultuous a new diagnosis is. It's frightening and demands that you make critical decisions while you're completely stressed. Naypaul's analogy makes great sense, at least to me. I know my mother-in-law, who had stage 4 with mets to the brain, had just a couple radiation treatments to reduce the pain in her brain. The intent was palliative, not curative, and it did get rid of the headaches. Hopefully, you have a good doctor who will explain why and appreciate your role in this process. I really have not much figured out about being involved with this whole crappy cancer thing, but one thing I'm really sure about it that you'd better feel good about the care your loved one is getting. Damn good--it really makes all the difference if you're confident.

Also, cancergrace.org is a cool site in that you can post questions and MDs answer them, so that may be worth a try if you're not wanting to doctor shop but want a second opinion (I got that info off of posts from this site, and it's totally helpful).

gayletaps
Posts: 26
Joined: Nov 2011

Ask your doctor why they won't be using radiation. I did 4 cycles of Carbo/Taxol. They dicided not to do radiation. I was stage 2. The reason they didn't do radiation on me because of the location of the tumor. Although I had surgery to remove the tumor, they felt that "radiation might do more harm than good." Those were the words my oncon used but that was my individual case. So just ask the doctor, there probably is a reason, and you should find out why not. In my case they removed the right middle lobe, and thought radiation damage my heart.

slr4nkh
Posts: 7
Joined: Jan 2012

Thanks to all of you for responding. This is new for our family and we are all like chickens running around with our heads cut off right. My mom is a very strong woman and she is going to fight to her last breath.

The analogy makes sense and in the back of my mind I knew that was probably the case. It would do more harm that good and what are they going to do? Radiate the whole body? So, I guess I can understand..don't want to but I do.

The only symptoms she has is an ongoing cough and now since the biopsy horrible night sweats to where she has to change clothes one or two times a night. Like I said that's new since the biopsy last week. Anyone have experience with the night sweats and what is good to help that out?

She is eating 100g of protein a day and we are trying to up her weight just a little as she is only 104lbs. She's small already and has lost about 6lbs in the past year so not a dramatic weight loss. I'm hoping with the ensure and all the protein she will be able to at least maintain her weight.

Mom and Dad both quite smoking New Year's day when she was released from the hospital and was told it was more than likely cancer and it was in the distant lymph nodes. So I am proud of them for that and hope that helps in some way.

I've been reading story after story, good and bad, since that day trying to learn as much as I can about this process and am truly grateful for all of you for posting your experiences and replying to people like me. Thanks again.

iola_s_mom_is_so_brave's picture
iola_s_mom_is_s...
Posts: 16
Joined: Jan 2012

I totally understand your feeling. My mom is 58 this year. she was diagnosed stage IV on 6hth.Jan this year. She has been given injection since that day. We havent started Chemotherapy yet. Doctor says she needs to take the Chemo first see if her body respones. I didnt tell anybody since I knew her sickness as I couldn't accept the truth even now I ask myself if this is real everyday when I wake up. Now my friends know it. But I don't feel want to talk about this with them. I mean...I don't need comforts. I hate to hear 'don't cry, be strong' I am strong, never let mom see me cry. Please be brave, you are not alone. We are all fighting together! I wish all the best to you and your mom :-)

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