CSN Login
Members Online: 11

You are here

Just Diagnosed and am very overwelmed

beckysboys402
Posts: 7
Joined: Jun 2009

I was just diagnosed on 06/11/09 with lung cancer thru a CT Scan lung biopsy. I was told the mass was 4-5mm. I have just finished the quantitative perfusion scan and PET scan and will see DR on 07/08/09. Dr said I was not a good candidate for lung disection because I did not do well on the breathing function test. I do not know if it has spread or what stage it is in, but am finding this so overwelming and depressing. I am not married, own my own business (no employees), family is in another state. How do you cope with all that is transpiring and how can I prepare for treatments if there is any. I am thinking, maybe I should sell my business and home and move closer to my family. It sounds like this is going to be debilitating. Anyone have suggestions? I just am so overwelmed, depressed, confused, etc.

myjd65
Posts: 7
Joined: Jun 2009

Hi Beckysboys402,
Welcome to the board!
My Dad was diagnosed with Stage IV non small cell lung cancer in May. The mass is in the right lung and is 9mm.
There is so much information out there from the American Cancer Society. If you call them they can help with transportation, meals, financial help, etc. There are also some great websites out there with great information:

Lungcancer.org
is a great site they have a section lung cancer 101.
Here is the link to their site:

http://www.lungcancer.org/reading/

Another website medicine.net has great information and the answer to many questions that you may have. Here is their link:

http://www.medicinenet.com/lung_cancer/article.htm

The Mayo Clinic also has a great website...here is their link:

http://www.mayoclinic.com/health/lung-cancer/DS00038

My Dad lives in Nevada and I live in Delaware. We asked him to come back and move in with us but he wanted to stay out there. He has a great group of friends that have been helping. I was out there in May when he got diagnosed. I am flying out again on 7/7 for a week.

It's been really hard because he is so far away but we talk 2-3 times a day.

Hang in there. Please feel free to email me if you would like to talk more.

Sending Lots of hugs,
myjd65

beckysboys402
Posts: 7
Joined: Jun 2009

Thanks for all your information and the welcome to the board. I really appreciate all the informative links and sites you gave me, I will definitely look into them. I am only 59 and am scared at the thoughts of losing my business, then end up losing my house because of that. Due to my age I cannot retire and disability will not cover my bills. Because your Dad lives so far away you can understand how hard it is. I talk to my family quite a bit, but it is not the same as if they were there in person with you. I want to prepare or be prepared for what may happen, I am afraid that after all these tests and waiting forever the Dr will decide to do this or that with no forwarning. I guess I am trying to prepare for the unknown. How can you prepare for the unknown? And what about the medical bills? I have insurance, but not the best. I have already had to pay $1,000 just from the first CT Scan.

I hope your Dad is doing well and that you have a nice visit. You never said what type of treatment your Dad is receiving or is it not appropriate to ask or say. Have a safe trip and thank you again for your compassion and response. It has helped. I am sure we will or hope we will be able to talk more later.

beckysboys402

myjd65
Posts: 7
Joined: Jun 2009

Hi Beckysboys402,
Thank you for your reply. How are you doing today?

It's so hard to try and prepare for the unknown. I have had many conversations with my Dad about this and its hard to talk about.

When I spoke with the American Cancer Society they said they can help with medical bills.

My Dad is doing good today. The treatments my Dad is getting is 6 cycles of chemo therapy using Carboplatin & etoposide. He has 3 treatments to a cycle and has completed 2 cycles, and has 3 weeks off after each cycle.

He is now getting 12 radiation treatments. He finished his 7th treatment as of yesterday. The radiation oncologist said he had great insurance but he had to pay $1006 for his co-pay for the radiation. He will start chemo cycle 3 on 6/30.

After the second cycle of chemo my Dad lost his hair and has nausea. So we went and got him an assortment of bandannas in every color we could find. Now he matches the bandannas with all the clothes we wears...he is too funny.

Hang in there and hope you have a great day.
Please keep in touch.
Lots of hugs,
myjd65

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Please do not assume the worst. That can happen when the dr's only give you a small piece of information and you have to wait for days if not weeks to find out more. Don't make any concrete decisions until you find out more. It could very well be possible that your cancer can not only be controlled, you could actually go into remission. I know it's all overwhelming, but try to rely on loved ones and friends until you know more....concentrate on good things please :) It serves no purpose to worry, it will only make things worse. Please let me know what happens, I care!

beckysboys402
Posts: 7
Joined: Jun 2009

Thanks for the response. I appreciate the input. I am not worried about controlling the cancer or it going into remission, I am worried about my financial situation during and hopefully until that time I go into remission. Living alone with no other income coming in but my business is all I have. And now medical bills on top of that is very scary.

Thank you for your support it is appreciated and needed.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Most of us on this board can relate to the feeling of being overwhelmed when you first get the diagnosis. I was diagnosed in May '09 with NSCLC adenocarcinoma and a week later (after my PET scan) was told I also have squamous cell carcinoma of the larynx. Like you I was in such a state of shock and only thinking the worst. After many more tests and meeting with several doctors I am much more confident about the outcome. My prognosis may not be the best but I am confident that I have many more years to enjoy my life and my family.

I can more than relate on the financial worries as I am no longer able to work and my husbands social security is not enough for us to survive on. I am very fortunate that the hospital where I am being treated has a Financial Assistance program to help people who are uninsured/underinsured. Please check with your hospital and see if they have a similar program (I was referred there by my oncologist before I even saw him). Also contact your local American Cancer Society, they may be able to put you in touch with organizations that can help you financially also.

Please don't let the financial situation cause you more stress (easier said than done) because you have enough on your mind right now. Just try to stay calm and keep telling yourself that you will get through this. There really is hope, you just have to believe it.

Don't make any rush decisions right now as you may regret them once you have all the information you need to make the right decisions. One of the hardest parts of all of this is the waiting and the testing but you will make it through all of that.

I sincerely hope you have friends or family who can be with you through all of this as I can't imagine doing it alone.

Please stay in touch so we know how you are doing. We all care.

Glenna

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Beckysboys,
Don't jump to any conclusions...especially bad ones! I know it can be frustrating and nervewracking waiting to get all the information from your doctors, but a lot of times, we can build a situation in our heads that is so much worse than reality.

Attitude is one of the most important weapons in your fight against cancer. It's okay to be scared, but you have to stay positive! You're at the very beginning of your fight here, and it sounds like you're already ready to give in! Say it ain't so! It seems like you are close to your family even though they are physically far away. Stay in touch with them and let them know how you are feeling. I would also ask their input and advice on any major life decisions you are thinking about.

Also, if it's the financial situation that has you troubled, there are many ways to get help there too. I would recommend keeping your business going as long as you are able. In addition to the income it will bring you, many people find it helps them during their battle with cancer to keep up with as many of their normal daily activities as they are able. Also, like others I have suggested, I would see if your hospital has a financial assistance program. Many hospitals also offer you the opportunity to speak with a social worker who may be able to help you with finding additional financial assistance. If you are having trouble paying your bills, many hospitals are even willing to negotiate their prices. Also, contact your local American Cancer Society for more help and info.

It is imperative that you stay positive! I was diagnosed with stage IV NSCLC in December 08 (at age 26) and there have been plenty of ups and downs during my treatment. Certainly some things have happened that I wouldn't have hoped for (I had to quit my job and move home, my cancer shrunk after a few rounds of chemo, but then began to spread to my ribs and lymph nodes, the inflamed lymph nodes have pushed on my esophagus to the point where I am no longer able to eat solid food, but had to have a feeding tube installed, etc). I don't share this info to scare you, but to let you know there will be ups and downs and you have to stay positive!! Don't give up the fight, especially not before it even begins.

Last but not least, We're all in this together! Keep us posted here on the message board (no pun intended) and we can all help each other get through this!

catcon49's picture
catcon49
Posts: 398
Joined: Aug 2008

I am sorry to hear of your ordeal. the nodule sounds very small and I agree don't jump to any conclusions before you have to. I was dx as a stage 1a lung cancer, I had surgery 9/10/08. It did not metastisize no lymphnode involvement. I had VATS surgery. I am now walking about 2-3 miles a day 1 mile of it is up the mountain I live on. I have almost a complete recovery as far as my breathing. Drs said I probably wouldn't run any marathons. But my husband and I are considering a 5 mile walking marathon for cancer. I just have a little discomfort from the surgery. Nothing compared to the thought of having cancer. Alot of thoughts are probably racing through your head now but don't let your self get ahead of everything. They may simply watch the nodule to see if anything develops.

beckysboys402
Posts: 7
Joined: Jun 2009

Some of your comments made sense and yet others have confused me. The Dr said I had cancer and that I did not qualify for the lung disection due to poor lung function test. Gave me different inhalers to use to see if it would increase the function of my lung so they could do a partial lung removal. If it does not improve in a couple of weeks, then they will decide on radiation and/or chemo and nix the surgery. In between time I have had a quantitative scan and a PET Scan. I at this time do not know if it has metatisized. I am not sure why you are mentioning a nodule. The cancer is about 1/4 to 1/2 of my right upper lung. My concern has been not having any family in the state I live in and not being married has been making it difficult. Let alone the financial burden.
But it is encouraging hearing about your situation and that you are doing better. Thanks for the comments it does help!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

You are providing conflicting information. You say at first that they have detected a 4-5mm nodule (I had a 4mm nodule, which they WANTED to grow before taking out, it was so small) and then you say that it is consuming 1/4 to 1/2 of an entire lobe.

Both cannot be possible, I do not believe.

Please advise as to the nature of this discrepancy, so that we can be of more useful assistance.

In the meantime, good luck!

Take care,

Joe

beckysboys402
Posts: 7
Joined: Jun 2009

Sorry if I am giving conflicting information. This is all new to me and I may be using the wrong terminology. I have not seen the doctor for the final decision after my pet scan and quantitative perfusion scan on what type of treatment they are planning. I just remember the DR stating that the best solution is to do a lung disection, when I saw him on 06/11/09 (after the results of the lung biopsy). He stated that I did not qualify for the lung disection because of the poor lung function test. As stated in the beginning, it is all so overwelming. I will wait for the DR visit in 3 weeks. Guess I am jumping the gun by asking all these questions. Again, I am sorry.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

beckysboys402,

It's so hard to focus on what the doctors are saying when you're confronted with a cancer diagnosis, we've all had that problem :) Maybe he/she said centimeters, and not millimeters?

Deb

Connie Jo
Posts: 5
Joined: Jun 2009

Hi beckysboys402,

By way of introduction, I had lung cancer 10 years ago which caused me to lose
my entire right lung. I'm here to tell you it's possible to make it through the
ordeal! I have a few pieces of advice for you which I found very helpful. I
took people to my Dr.'s visits so that I had extra ears to hear the things I
couldn't. I also think it's a great idea to take a tape recorder with you so
that you can listen to the information again later. The other thing I did, which
was suggested to me by a friend, was to seek guidance from a hypnotherapist. I did
this and was so thrilled to have her input. She was able to give me calming messages
that I could listen to throughout the day on a tape recorder prior to the surgery. I
also used her for the healing process.

I see that you have received advice on the financial matters but just to add one more
bit of info. -- maybe your hospital has a patient advocate that can assist you. I
know that the hospital where I had my surgery did and I still use her to this day.

I hope this helps in some small way. Take care of yourself.
Connie Jo

pkl54
Posts: 6
Joined: Jul 2009

How hard to have to bear the burden of cancer and money!! I hope you get well and survive for a very long time. My husband was also just diag. and I am "pattie positiver" and I know everything will work out, one way or the other and that God will be there each step, no matter what the outcome. He worries about money too. He is on a pension but at 60 is still wanting to work, and I work. But since he needs a hip replacement and the cancer of lung and liver were found in pre-testing, he is in pain till we know about treatment for the cancer. We have good ins. but it is still a worry. I can't imagine what it would be like in your situation. GOD BLESS.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Thank you for your kind words. You are right about the double stress of "money" and "cancer" but we are still hanging in there and hoping for the best. We have sold everything we own in hopes of surviving until I can receive disability, as my husband always tells me - it's not the material things that matter to him now. I'm sure we will make it through all of this and come out stronger in the end. I just remind myself daily that there are many others who are going through tougher times than I am.

Take care and stay in touch to let us know how you and your husband are doing. We care!!

Glenna

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Here are a few ideas for potential financial support.

http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

This site is put up by the National Institute of Health or some such, and is government-supported.

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

Live Strong - www.livestrong.org - offers one-on-one support.

American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

Best wishes.

Take care,

Joe

cabbott
Posts: 1048
Joined: Aug 2006

A CT cannot absolutely confirm that you have lung cancer. It can look pretty certain, but I have visited folks that were "sure" it was lc when the surgeon went in, and it turned out to be a treatable infection. Another lady who had surgery the same week as me had a nodule that was "sure" to be cancer on the scans turned out to be TB. That may not be a picnic, but after a few months of antibiotics she will be okay and it was a whole lot better than what the surgeon was expecting. If it is lung cancer, that nodule is mighty small. It takes 10 mm to make one centimeter. 2.5 centimeters make an inch. 4 mm is about the limit of what a CAT scan can even pick up. It is less than half an inch. If the report says 4 cm, that's bigger. Go get a copy of your report and check. Those reports are kept at the hospital, but they have to give you copies. Keep them in a ring binder and take them with you when you visit your doctors. It will save time to keep your own records. Sometimes saving time makes a big difference both in your bank account and in your quality of life! You still have options no matter how big that nodule is. Regular lung surgery may be out if your lung function is not so good. They don't want to put you under for surgery if you aren't sure to make it out of surgery. But there are still options. Some folks could handle a VATS operation even if they couldn't handle a regular thoracic surgery. VATS is like laproscopy for the chest. Regular surgery might need a rib or two removed while a VATS procedure leaves 3 incisions you could cover with bandaids. You need to see a thoracic surgeon at a teaching hospital that specializes in lung cancer to see what other options are available. Another option that I have heard about for non-surgical candidates involves using a special dye that is light sensitive and a laser. The dye is connected to something that kills the cancer cells. The laser activates the dye. It can be used to treat the cancer more than once. It think it works best on cancers in the upper part of the lung, but I'm no doctor. I am sure that while this procedure is available in the US, it isn't available in every state. You may have to travel to get what you need. Removing a lobe containing nodules as small as yours (if it is 4 mm) is the gold standard for early stage cancer. It is often curative. But there are other options. (Another that hits me right off the bat would be to get a referral to a top-notch pulmonologist and do whatever it takes to get your lungs in better shape. Then maybe surgery would be an option too!) Good luck!

C. Abbott

PBJ Austin
Posts: 347
Joined: Mar 2009

cabbot, your stories about treatable infections are giving me so much hope. As you may recall from my thread, I have a 6cm mass in my lung. After the first CT scan the radiologist said she was "90% sure" it was cancer, so my husband and I were devastated. But after the needle biopsy all they got out was dead tissue (snot as they called it) and not enough cells for cancer testing. I am going in Monday for a second biopsy which will be through the nose and into the lung. Supposedly this will give a better sample. I am hoping and praying it is indeed a treatable infecion that does not require surgery. I just want to thank you for sharing these stories.

beckysboys402, all the best to you and all other cancer survivors. Each and every one of you are in my daily thoughts and prayers.

Subscribe to Comments for "Just Diagnosed and am very overwelmed"