New post - my dad has cancer - we are all so scared

[Diane]

This is my first time on this site. My dad was diagnosed yesterday with lung cancer and the dr said the liver was involved, which most likely accounts for his lack of appetite. They haven't done a biopsy yet, but are doing one on Mon or Tues, but they have done a cat scan of the stomach, which they did did because he had lost his appetite. The dr then ordered a ct of the chest and blood tests. I don't know how they knew the liver was involved. When they did the ct scan of the stomach, they caught the tip of the lung mass on the scan, but no-one ever said anything about the liver. They told us it was a 1 inch mass on the lung, so we were a little hopeful, but after the news about the spread to the liver, we are all just heartsick. The dr said there is always hope, but it pretty much got lost in all the other scary things he told us. I don't know how to comfort my mom and dad, but they do have 3 of us kids who will be there for them for whatever they need. My dad is so skinny, I am worried he won't be able to withstand the chemo. Where's a good place to start on this website to find people who are in similar positions? Thank you.

[Larry's Wife]

Hi Diane. Sorry you had to find us, but you came to the right place. I'm sure folks will start replying to you very soon.

My husband has not lost his appetite this time, but he couldn't eat solid food several years ago when he was battling non-hodgkin's lymphoma. He drank Ensure. It comes in a few flavors. Larry liked the vanilla. As a matter of fact, I have some in my pantry now, just in case I need it.

Lynn

[Joe B]

Qelcome to the board! Sorry you have to be here, but this is a great place to get help and support. They can see part of the liver when they do a CT scan of the chest.

Don't believe the published statistics regarding survival. There are plenty of stories of hope here. Take it one step at a time, and make sure you go to a NCI accredited Cancer Center and get a second opinion b4 you start treatment.

Hang in there...and try to cling to successful survival stories that you see and read.

[Ry]

There are medications that will help your dad's appetite- ask about Megace. You can also try giving him Carnation Instant Breakfast between meals. It has all the nutrients of the other supplements-- it just tastes better. Just make sure that he drinks so he doesn't get dehydrated-- that will cause him to lose his appetite also so it's important he stay hydrated. Once someone is dehydrated they lose their sense of thirst and hunger.

Many times things show on the liver that are benign so don't panic until they have done all the tests and you know exactly where you are. Let us know his treatment plan when you get one.

Rochelle

[cat127]

I second what Ry is saying. The liver is one of those organs that has a lot of "bumps" - cysts, hemangiomas, things like that. The CT of the stomach likely saw something on the liver, but at this point I don't think you really know for certain that the liver is "involved". The day my sister's CT showed a lung mass, I was told "she has lung cancer and the adrenal gland is involved". Well to this day, they have yet to prove that the adrenal is in fact a met. All tests point to it NOT being one and to her being stage 3b rather than 4. She is 1 yr post diagnosis and feeling very well and responding well. But that day I was told "and the adrenal is involved" I was distraught. But that was wrong. So hang in there until you get something definitive. Then even if there is liver involvement, keep on hanging in there. (Easy for me to say, as I remember all too well how difficult those early days were).

Good luck to you and your dad, you've been added to my prayer list.

[Patti B]

Diane-

You have gotten lots of good advice already and I would like to tell you welcome to this forum. You will find lots of hope, strength and support here.

Start reading people's profiles here - we have a lot of long-time survivors here. And as Joe said, DO NOT listen to statistics!! There is always hope!!

I, too am one of those people whose scans always show "somthing" on my liver but it is NOT cancer. Its so easy to say, but until all of the biopsies, etc are in place, its too early to panic.

Keep in touch and let us know if there is anything you need from us!!

Hugs - Patti B.

[Wendy]

Diane,

Welcome to LCSC!

Wendy - 4+ yr non-small cell survivor

[Flyman35]

Welcome to the forum Diane. I'm sorry you have need to be here.

My 72 yr old husband has stage IV NSCLC Squamous cell w/Liver involvement. He started having trouble early in Oct 07. He was officially diagnosed on 1/29/08. They saw the spot on the liver in the CT but because of the location they could not biopsy it without the risk of collapsing his lung. He sarted on chemo on 2/11 and 3 weeks after he had another CT. They said if the tumor shrunk or grew then they would know it was a met without touching it. Well it shrunk and we continued on with chemo and then last week he also started radiation. He remains strong yet feels a bit weak and achy at times and has not missed work other than the day of the bronchoscopy. We are now 4 months out from diagnosis. When we started the mass in the lung was 2.75" and the liver tumor was 1". We are now at 1.75" an .25".

In the beginning we were all freaked out as well. But as time goes on and he is responding so well to treatment we are a little more at ease yet it is still very stressful.

I pray that your father gets a treatment plan set soon and gets a good response like Tom has.

Like the others have said make sure he stays hydrated.

Keep reading for stories of hope and survival. Good luck

Denise

[Shelley (MLC)]

Diane, I am so sorry to hear about your Dad, but very happy that you found your way here. This site will be a tremendous source of help, info and support. Please start reading the profiles. You will find much hope in many of those. My mom was diagnosed about 1 1/2 years ago (stage 4 squamous cell) and she is doing very well. I wish you, your Dad and family the very best. Shelley

[peebygeeby]

Hi Diane,

Welcome. Sorry you have a need to be here.

There are many fine people participating on this forum who have lots of good info, and will offer you their support in any way that they can.

I am relatively new to all this, and have been helped so much by the people that I have found here.

About the possible met to the liver you spoke about.... when Hank was initially diagnosed they thought that there was something in his liver. It turned out to be nothing of concern.

So, don't panic, wait and see what the treatment plan will be, you will feel more in control then. Then....fight like hell!

All the best,

Gail

[Diane]

Thank you so very much to all of you who replied. I was again feeling very down today because after being at my mom and dad's house, my mom told me my dad is afraid that they will do the biopsy and tell him there is no hope. My mom told him they will never give up hope no matter what the doctors say, but the thought of how afraid my dad must be is depressing me nonetheless. Then I saw I had some replies to my post and I felt like a weight was lifted. I am convinced there is hope for him. If I can show my mom how to post to the website I will because I think she'll feel better too. Thank you all again very much!! Someone also told me to make sure the cancer center we're going to is NCI (I think) accredited, so I will check that out and also research what that means.

[Diane]

It was suggested I make sure the cancer treatment center we go to is NCI accredited. I found there are only 2 here in the Chicago area that are at Northwestern Hospital or University of Chicago hospital. Can anyone tell me why that accreditation is important? One thing I'm a little leery about is that I've heard the university docs can be kind of cold. We want both a compassionate physican and also the best care - I hope that's not asking too much.

[shellit74]

Diane,

Welcome to the board!

My Dad also had LC with liver involvment. He was diagnosised with stage IV right away and lived for 3 years. One thing I remember thru it all was the Oncologist saying that the live can be functionable even if its loaded with tumors, Dad had a bunch! Basically it takes a lot to shut it down.

I am not sure of your location in Chicago, but if you are willing to travel, the University of Wisconsin Comprehensive Cancer Center is a wonderful place!!! (in Madison) I used to work there until my Dad became ill and then I moved back to Oshkosh.

Take care

Shelli[/b]

[SandraL]

Hi Diane and welcome to this site. When I first joined here I had no idea how to go about researching. There is such a wealth of information here but it can be a daunting task to go through it all. So, a few suggestions. Until you know more about the specifics of your dad's situation, just go into one of the forums, like general, or family members/caregivers and just ask any question you would like. Not to worry at all that the question might have been asked before, people here are always quick to answer any questions. And then once you know more specifics about your dad's cancer and what the treatment plan is you can ask more specific questions around that, and even ask people who have had similar to identify themselves who have had similar. I found reading people's "signatures" very informative as to the history of their treatments etc. In the meantime I pray you will find lots of "hope" here and that you can pass that along to your dad and your family. Once a treatment plan is in place, everyone will start to feel better. Take care

Sandra

[Barb73]

Diane,

Welcome to this great site, and although it is wished you did not have a reason to be here, it is definitely the place to be for support.

You are frightened, of course, I know that scene. I was there 3 1/2 years ago - scared out of my wits - so upset.

But, I "met" a Stage IV lung cancer survivor, Dave, online at another lung cancer site. It was one which he co-founded, and he encouraged me NOT to pay any attention to statistics, naysayers, nor spend my time in negativity (easier said than done). It was the best advice I ever received. I took it and ran with it. Sometimes, I stumbled, but once again retrieved my resolve.

Dave died after fighting lung cancer for five years. He had liver involvement, as well. He always reminded us that there are newer and more improved cancer drugs arriving in the pipeline. What might not work at one time for any one individual, another one might well do the job.

Recently, on our trip to the Cancer Center at HUMC, we met an old neighbor from our youth (when we were in our twenties).

She was there with her husband, who was diagnosed with lung cancer, Stage IV, last June 2006. He had a met to the liver, which has become STABLE (a good word). He told me that he was in remission. He looked fine, and was still working at age 73. I am 73, and marveled at his fortitude.

Diane, I always try to remember that there are "Lies, damned lies, and there are STATISTICS." Most are old.

When Bill was first diagnosed, we were told over and over about keeping hydrated (lots of water, or as in my husband's case, green iced tea). Eating is so important, as well. He still follows that advice.

I hope you will keep visiting and/or posting, Diane, and let us know more about your Dad's journey.

Once Bill and I knew pretty much what we were facing, and the treatment regimen, we felt a lot more secure - never completely secure, but what we call "our new normal."

Sending wishes for blessings,

Barbara

[recce101]

Hi, Diane, welcome to the group. You've received some great advice, and I just have a couple of things to add.

I believe it's very important that you and your dad feel comfortable with, and have good rapport with, the doctors and other staff who are treating him. Mental attitude is a key ingredient in fighting this disease, and I'm not making that up. If you sense a good combination of compassion and teamwork in your current clinic, but there are some questionable items in your dad's diagnosis or treatment plan, you could probably arrange for a second opinion at one of the major centers but then have the treatments done at the original clinic. If fact, your current clinic might even arrange for that second opinion, and the two doctors could consult on the plan of treatment, which would be done where you feel most comfortable.

Also, if you haven't already, please visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here.

Best wishes and Aloha,

Ned

[LovesLife]

Hi Diane - Welcome to this wonderful place of support and love at a time when it is so needed. I truly wish you didn't need to be here because of your dad, but it is full of HOPE and that is so important.

Best wishes,

Linda

[cpollock413@aol.com]

i;m sorry - i meant to write something but can't write now - my dad diagnosed last week - after all the cat scns, pet scans, etc. We had a lung needle bioposy today with a brain scan thurs and a bone scan friday. it sucks - i'm normally more articulate but right now everything SUCKS.

If god willing we start chemo next week.

best to you always