New again!

I am going through this again for the 4th time,but this time is different. Father died in 1997,sister died in 1997,and brother died in 2010 and now husband was diagnosed on 5/31/12 with lung cancer.Dont know what to expect even after all this. Dont know what kind of lung cancer, all I know is  that they are going to inject sugar water in him. Does anyone know why they do that or what they hope to find out. Someone out there please advise me. Linda

 this test is called a Pet Scan... mine was done in a semi-truck bed outside the hospital, it's a highly controlled radio active enviroment..the sugar they insert into the body glows when it finds cancer cells, cancer loves sugar and goes to it. I was injected with the mixture, sat quietly for an hour and then put on a table, a round tube goes back and forth and scans your body, there was no pain..you are instructed when to hold breath and to breath normally..

I'm sorry to read of all your experience with cancer, it's an evil disease 

Thank you for answering....I just cant beleive I am going through this again.I dont remember any of my other family members going through that test but I could be wrong. Wish I knew what type of cancer it was so I could read up on the different kinds. My husband was so thrown, all he could say was the type started with an S(lung cancer). So until I know something ........Thanks again

Hi There, I am so sorry you are having to go through this yet again.  I'm not sure your other relatives would have had a PET scan back in the late 90's.  I'm thinking that it wasn't available yet.  You said your husband said his type of lung cancer started with an S, so I'm wondering if it's Squamish cell lung cancer.  It seems you should be able to call his doctor and find out the type it is so you can do some research.  I think I'd make that call and find out the type, including if it is non small cell, or small cell lung cancer.   Your husband must have had a biopsy if they know what type of cancer it is too.  With that biopsy they should find out what type of mutation his cancer is.  You need this information, it helps define the treatments he will recieve.  I'm thinking the PET scan will be used to see if his cancer has metastisized, or spread anywhere in the body. 

You have, as well as I have, had a lot of relatives struck with cancer.  Let me tell you, there have been so many advances since the 90's when your relatives were being treated.  I was diagnosed in 2010, and you wouldn't believe the progress that's been made just since then.  The treatments, the drugs, and the prognosis has changed tremendously just since I've been diagnosed.  Let me tell you also that the statistics you read about now, were compiled within the past 10-15 years.  We are the new statistics now.  There is HOPE, and people are LIVING longer and longer with this disease. 

I can't begin the describe how dumbfounded I was when I was told I had lung cancer.  I know how your husband feels.  For myself, a prescription of xanax helped me.  I didn't have to take it every day, but when my mind would not let me think of anything else other than CANCER CANCER CANCER, I would just take one, and my mind would settle down.

I was diagnosed stage 3a, non small cell lung cancer,  adenocarcinoma with BAC features .  I am now nearly a 2 year survivor.  I have been cancer free since July 12, 2012.  I had an upper right lobectomy, followed by chemo.   I've surpassed the stats.

So, I hope I haven't babbled on too long.  I hope I've given you HOPE.   I'll keep you in my prayers.  If you have any other questions just ask us.  We're in all stages here, and are happy to help others along this dreaded path.  Take care, and God Bless, Byrd

Ah, they need an edit button here.  I meant to say I have been cancer free since July 12, 2010.  I was diagnosed on May 26,2010, 4 days before my 56th birthday.  Ironically, my father died of small cell lung cancer at 56.  So, to say I was scared to death is an understatement.

Byrd

Thank you for being so open and honest with me. My husbands cancer was found by accident. He fell and hurt his back so we went to the ER at the VA hospital. They did a CT scan to make sure there were no bleeds in the brain. They also did a chest xray and that is when they found a mass in the upper right lung.

He was hospitalized and it was test after test and they also did a TB test which came back negative. It seems like it is taking such a long time to get anything done. So I am wondering should we go to a regular onocologist and bring all the records or stick with the VA. I would appreciate any input.....Linda

Hi Linda,

     If you click on my name, it will take you to my profile and you can read how I finally got diagnosed with lung cancer.  It was a long road for me just to find out what was wrong.  Anyway, I know right now you are anxious to just get a plan of action going.  I know it's also frustrating to have to wait while all these tests are going on.  Once I was diagnosed with cancer, I then had an appointment with an oncologist.  Well, after I found out that he didn't really have a clue, I got a second opinion.  I traveled 45 minutes each way to a teaching/medical State University. (Froedtert in Milwaukee) for that second opinion, and subsequently all treatments.  At any University cancer center, they have specialists in just your type of cancer.  You'll have an entire "tumor board" of doctors who will discuss all the best options and treatments for you.  I know in my small hometown, there was only one oncologist, and he handles everyone's cancer.  It's like they just go to a book and pick out the normal average treatment option for the cancer and procede.  If I'd have stayed in my hometown, I don't think I'd be alive today. 

Having said all that, now I want to tell you that all VA hospitals have a teaching university near them who work hand in hand with the VA.  My own oncologist worked at the VA too.  A University cancer care center will also not cost your insurance any more than any other cancer center.  I'm excluding CTCA here.  My insurance would not cover me if I was treated there.

So, with me, diagnosed May 26th, lobectomy on July 12th.  I know it sounds like a lot of time, but there were tests to be had, and I also had to recover from all the biopsies I had just to be diagnosed.  I also had CT scans, PET scan, and blood tests. 

It sounds like your husband may have found his cancer earlier than most people too.  Lung cancer usually has no symptoms until late stage.  If it's found in early stages, then it's usually because of being tested for something else.  Sound familiar?  Anyway, all lung cancer patients hope to be able to have a lobectomy.  That is the first thing that doctors hope for also.  Lung cancer needs to be taken out, and then can be treated with chemo and or radiation. 

I hope you take time to read my story, and I hope I've given you some positive imput.  The PET scan will clear up any questions if  it has spread, and I'm thinking probably not in your husbands case.  So, there is good news mixed in with all this.  I know it's hard to look at this as good news, but in time you will realize small things add up and pretty soon you and your husband will be standing back saying "whew, we made it through this!"

So, here you go.  You'll be pretty busy doing all kinds of doctoring.  I found keeping a little notebook handy with stuff I wanted to remember, stuff I wanted to ask about, and just how I was feeling at times.   I don't know what kind of insurance your husband has, and I don't know how confident and comfortable he is with his doctors at the VA.  But, my husband goes to the VA in Milwaukee and is very pleased with them.  We've not however, had to deal with a serious illness with him.  I would say, go ahead and follow the plan for now until you see all the doctors you need to at the VA.  Your husband should see a thoracic surgeon (he will be the one to take out the upper lobe of his lung - and also the guy who will stage the cancer)  then an oncologist, or possible both guys at the same time.  Your husband will not begin chemo until about 6 weeks after the lobectomy.  I myself had 4 treatments 3 weeks apart from each other.  I did not have to have radiation.  What's left to radiate when all is taken out right?  From there it's just a ct scan every 4 months for 2 years, then once every 6 months until the 5 year anniversary.  Then a ct scan only once a year.

Wow, I sure can ramble on and on.  Once again, keep your spirits up, your faith strong, and your resolve to kick cancer's butt on top of your list.  I know you guys can do it, and I'll be here to answer any questions you may have along the way.  It sounds like your husband is about the same time frame as I was.  So, right now I can say this summer will probably be a blurr in a couple of years.  Don't be afraid, either of you, to ask for a little help (xanax) because stress is not our friend if we have cancer.  Count your blessings every day, or whenever you feel lost in this mire, and you'll find yourself smiling.   But most of all, lean on each other, and both be possitive and assured in your belief that you can beat this!!  You'll be surprised how much better you feel once you've got a course of action to follow, once there is plan and a timeline.  The unknown is the worse.

Take care Linda, and let me know how the PET scan goes.  I'm keeping positive thoughts that it will all go well.

Byrd

On Jun 05, 2012 12:06 PM thebyrdsfriend wrote:

Hi Linda,

     If you click on my name, it will take you to my profile and you can read how I finally got diagnosed with lung cancer.  It was a long road for me just to find out what was wrong.  Anyway, I know right now you are anxious to just get a plan of action going.  I know it's also frustrating to have to wait while all these tests are going on.  Once I was diagnosed with cancer, I then had an appointment with an oncologist.  Well, after I found out that he didn't really have a clue, I got a second opinion.  I traveled 45 minutes each way to a teaching/medical State University. (Froedtert in Milwaukee) for that second opinion, and subsequently all treatments.  At any University cancer center, they have specialists in just your type of cancer.  You'll have an entire "tumor board" of doctors who will discuss all the best options and treatments for you.  I know in my small hometown, there was only one oncologist, and he handles everyone's cancer.  It's like they just go to a book and pick out the normal average treatment option for the cancer and procede.  If I'd have stayed in my hometown, I don't think I'd be alive today. 

Having said all that, now I want to tell you that all VA hospitals have a teaching university near them who work hand in hand with the VA.  My own oncologist worked at the VA too.  A University cancer care center will also not cost your insurance any more than any other cancer center.  I'm excluding CTCA here.  My insurance would not cover me if I was treated there.

So, with me, diagnosed May 26th, lobectomy on July 12th.  I know it sounds like a lot of time, but there were tests to be had, and I also had to recover from all the biopsies I had just to be diagnosed.  I also had CT scans, PET scan, and blood tests. 

It sounds like your husband may have found his cancer earlier than most people too.  Lung cancer usually has no symptoms until late stage.  If it's found in early stages, then it's usually because of being tested for something else.  Sound familiar?  Anyway, all lung cancer patients hope to be able to have a lobectomy.  That is the first thing that doctors hope for also.  Lung cancer needs to be taken out, and then can be treated with chemo and or radiation. 

I hope you take time to read my story, and I hope I've given you some positive imput.  The PET scan will clear up any questions if  it has spread, and I'm thinking probably not in your husbands case.  So, there is good news mixed in with all this.  I know it's hard to look at this as good news, but in time you will realize small things add up and pretty soon you and your husband will be standing back saying "whew, we made it through this!"

So, here you go.  You'll be pretty busy doing all kinds of doctoring.  I found keeping a little notebook handy with stuff I wanted to remember, stuff I wanted to ask about, and just how I was feeling at times.   I don't know what kind of insurance your husband has, and I don't know how confident and comfortable he is with his doctors at the VA.  But, my husband goes to the VA in Milwaukee and is very pleased with them.  We've not however, had to deal with a serious illness with him.  I would say, go ahead and follow the plan for now until you see all the doctors you need to at the VA.  Your husband should see a thoracic surgeon (he will be the one to take out the upper lobe of his lung - and also the guy who will stage the cancer)  then an oncologist, or possible both guys at the same time.  Your husband will not begin chemo until about 6 weeks after the lobectomy.  I myself had 4 treatments 3 weeks apart from each other.  I did not have to have radiation.  What's left to radiate when all is taken out right?  From there it's just a ct scan every 4 months for 2 years, then once every 6 months until the 5 year anniversary.  Then a ct scan only once a year.

Wow, I sure can ramble on and on.  Once again, keep your spirits up, your faith strong, and your resolve to kick cancer's butt on top of your list.  I know you guys can do it, and I'll be here to answer any questions you may have along the way.  It sounds like your husband is about the same time frame as I was.  So, right now I can say this summer will probably be a blurr in a couple of years.  Don't be afraid, either of you, to ask for a little help (xanax) because stress is not our friend if we have cancer.  Count your blessings every day, or whenever you feel lost in this mire, and you'll find yourself smiling.   But most of all, lean on each other, and both be possitive and assured in your belief that you can beat this!!  You'll be surprised how much better you feel once you've got a course of action to follow, once there is plan and a timeline.  The unknown is the worse.

Take care Linda, and let me know how the PET scan goes.  I'm keeping positive thoughts that it will all go well.

Byrd

Ditto for me exactly. Was diagnosed after a fall. If I listened to the docs here in Chicago I'd be dead today. Was diagnosed in Mar.2010. Today I'm clean after a long, winding and tough road.I needed to go to St.Joe Michigan. My best friends b-i-l has the same set-up with a board who meets weekly to discuss cases. I could write for another hour on what thwy did for me. All I know is that my last 3 PET Scans came up clean.

Hi, I have stage 4 small cell lung cancer.  I was diox in Dec/09.  I have been with UCDavis on clinical trails since then.  They helped me stay alive longer but that was all.  You should see a Oncologist, not the VA hospital.  They will tell you what they need from you. 

Good luck and God Bless your husband.

I am still alive and I am 78 years old.  Today is my granddaughters graduation from High School and her brother will graduate on the 16th of June from college.  I pray that I can see them graduate.  I also have a graddaughter that is expecting a baby in September.

Have faith and see a Oncologist.

Fran

Hi Fran,

Thanks for the input. I agree with you but it has to be his decision. He is scheduled to have his pet scan on Monday.Will let you know what transpires

Linda