Hello everyone

[TonyaJ]

Hi my name is Tonya and my daddy was just diagnosed with lung cancer a few weeks ago and has spread to his liver. We are all still very much in shock. It was found by accident and he does not have any symptoms what so ever. He is only 49. We have not been to see the oncologist yet. I have so many questions and am excited about being able to talk to people that have been or is going through the same thing.

[Annette]

Hi Tonya,

I am sorry to hear about your father - but you have come to the right place. There are many survivors here that can help you find answers to your questions - trust me we have had them and more - I can't even remember all the questions I first had.

Let us know what your dad's oncologist says and someone is bound to be able to help you ask the right questions. If you need anything just ask.

Annette

[RandyW]

My fave list of oncology questions from Rich Dadstimeon!

REGULAR COMMUNICATION WITH YOUR DOCTOR IS IMPORTANT IN MAKING INFORMED DECISIONS ABOUT YOUR HEALTH CARE. CONSIDER ASKING THE FOLLOWING QUESTIONS OF YOUR DOCTOR:

FOR ALL PATIENTS WITH LUNG CANCER:

• WHAT TYPE OF LUNG CANCER DO I HAVE?

• WHAT IS THE STAGE OF MY LUNG CANCER? WHAT DOES THIS MEAN?

• SHOULD I SEE ANOTHER DOCTOR TO ASSIST IN MY CARE, SUCH AS A THORACIC SURGEON, RADIATION ONCOLOGIST, MEDICAL ONCOLOGIST, AND/OR PULMONOLOGIST? WHAT IS THE ROLE OF EACH DOCTOR IN MY CARE?

• DO I NEED ADDITIONAL SCANS OR BIOPSIES IN ORDER TO PLAN MY TREATMENT?

• CAN YOU EXPLAIN MY PATHOLOGY REPORT (LABORATORY TEST RESULTS) TO ME?

• WHAT IS THE GOAL OF MY TREATMENT?

• WHAT CLINICAL TRIALS ARE OPEN TO ME?

• WHAT ARE THE POSSIBLE SIDE EFFECTS OF THIS TREATMENT, BOTH IN THE SHORT TERM AND THE LONG TERM?

• HOW WILL THIS TREATMENT AFFECT MY DAILY LIFE? WILL I BE ABLE TO WORK, EXERCISE, AND PERFORM MY USUAL ACTIVITIES?

• IN ADDITION TO TREATING MY CANCER, WHAT CAN BE DONE TO TREAT MY SYMPTOMS?

• ARE THERE ANY OTHER TREATMENT OPTIONS AVAILABLE TO ME?

• WHAT SUPPORT SERVICES ARE AVAILABLE TO ME? TO MY FAMILY?

FOR PATIENTS WHO WILL HAVE SURGERY:

• WHAT TYPE OF SURGERY WILL I HAVE? WILL LYMPH NODES BE REMOVED?

• HOW LONG WILL THE OPERATION TAKE?

• HOW LONG WILL I BE IN THE HOSPITAL?

• CAN YOU DESCRIBE WHAT MY RECOVERY FROM SURGERY WILL BE LIKE?

FOR PATIENTS WHO ARE TO RECEIVE CHEMOTHERAPY AND TARGETED THERAPY:

• WHAT ARE THE NAMES OF THE DRUGS, AND HOW ARE THEY GIVEN?

• WHAT ARE THE SIDE EFFECTS OF EACH MEDICATION? WHAT SIDE EFFECTS OR PROBLEMS SHOULD I WATCH FOR?

• WHAT CAN BE DONE TO LESSEN THESE SIDE EFFECTS?

• HOW OFTEN WILL I NEED TO VISIT THE DOCTOR TO RECEIVE THE THERAPY, AND HOW LONG WILL EACH VISIT TAKE?

• WILL I BE ABLE TO GO TO AND RETURN FROM THIS TREATMENT ON MY OWN, OR SHOULD I ARRANGE TO HAVE ASSISTANCE?

FOR PATIENTS WHO ARE TO RECEIVE RADIATION THERAPY:

• HOW WILL MY TREATMENT BE PLANNED? WHAT TYPES OF SCANS WILL BE USED?

• WHERE WILL I RECEIVE RADIATION THERAPY?

• HOW OFTEN WILL I RECEIVE RADIATION THERAPY?

• HOW MUCH TIME WILL EACH TREATMENT TAKE?

• HOW MUCH OF THE NORMAL LUNG WILL BE INCLUDED IN THE RADIATION FIELD?

• IS IT POSSIBLE FOR ME TO RECEIVE CHEMOTHERAPY WITH MY RADIATION THERAPY? IF SO, WHAT ARE THE ADDED SIDE EFFECTS OF GIVING THE CHEMOTHERAPY AT THE SAME TIME, COMPARED WITH ONE AFTER ANOTHER?

• WILL I BE ABLE TO GO TO AND RETURN FROM THIS TREATMENT ON MY OWN, OR SHOULD I ARRANGE TO HAVE ASSISTANCE?

FOR PATIENTS CONSIDERING A CLINICAL TRIAL:

• WHAT ARE MY OPTIONS FOR STANDARD TREATMENT?

• WHAT OTHER TREATMENTS THROUGH CLINICAL TRIALS ARE AVAILABLE TO ME?

• HOW WILL MY EXPERIENCE DIFFER IF I ENROLL IN THIS CLINICAL TRIAL, AS OPPOSED TO STANDARD TREATMENT (DIFFERENT RISKS, EXTRA TESTS OR TIME COMMITMENT, SCHEDULE)?

• WHAT IS THE GOAL OF THIS CLINICAL TRIAL? IS THIS A PHASE I, II, OR III CLINICAL TRIAL? WHAT DOES THIS MEAN?

• WHERE WILL I RECEIVE THE CLINICAL TRIAL TREATMENT?

FOR PATIENTS WHO HAVE COMPLETED THEIR TREATMENT:

• WHAT ARE THE CHANCES THAT MY CANCER WILL RETURN?

• IS THERE ANYTHING MORE I CAN DO TO REDUCE THE CHANCE THAT MY CANCER WILL RETURN?

• WHAT FOLLOW-UP TESTS WILL I NEED AND HOW OFTEN WILL I NEED THEM?

• WHAT TESTS WILL I HAVE DURING MY FOLLOW-UP VISIT?

FOR PATIENTS WHO SMOKE:

• HOW CAN YOU HELP ME TO QUIT SMOKING

Keep us posted!! the anxiety is high until the treatment starts!!

[Joppette]

Hi there,

Do come back and let us know the details. This is a caring and compassionate group, and are sure to be able to give you insight and advice as you care for your Father.

Judy in MI

[TonyaJ]

Thank you all so much. Its like we are living a bad dream and none of it is truce. Of courese im sure thats how everyone feels when something like this happens.

The pathology report came back as large cell carcinoma. He has a 2-2.5 cm mass in his lower right lobe. Like I said it was found by total accident. We had taken him to our local hospital for left elbow pain for the 3rd time over the last 9 months. The 2 previous times he had been treated for tennis elbow and sent on. This time they got to checking for a blood clot and were doing a PE Scan when they discovered the mass, from there they sent him to the local big hospital. He spent 5 days there. They done a bronchoscopy to get the bx.

When we went back to the lung Dr for the dx he said that it did come back as cancer but the final gram stain had not come back yet. He told us to go home and prepare for the worse but hope for the best. We live in WV and my dad is wanting to go to either OSU or Cancer tx center of america in PA. We live in WV and the Dr told us that he wanted him to start tx here first in case it takes a while to get into a big tx facility. I worry that its because my dad doesnt have health insurance although he does have the financial capabilities to pay.

Its been hard because I too am in the medical field so I have automatically taken the raines on the process. i have been the person to call and talk to the Dr and I have my grandmother calling me wanting to know why he hasnt been sent to the Oncologist yet.

I have been trying so hard to be strong for everyone, especially for my kids. I have told them what is going on but have not spoken to them about the worst possibility yet.

We did finally get an appt with the Oncologist on Oct 5th. So will go with my mom and dad to that appt also.

Would it be better to get a referral from the oncologist to go to another tx facility or is it something we can do ourselves?

I feel like my brain is in a jumbled mess trying to type what i want to say.

I appreciate so much for the help.

Thanks

[Joppette]

Tonya, large cell is actually Non Small Cell Lung cancer. We call it NSCLC here. This is good news. It's a slower growing cancer. The size of the tumor is not overwhelming either. Mine was 4.5 CM. I'm here 4 years later and doing very well.

#1 question is can they do surgery. Or did it metastiszie elsewhere? If they can do surgery, they should. That is the best possible thing. If not, then what are they proposing?

If you live in a small town (which I suspect), I recommend that you go to a larger hospital. Many times the little regional hospitals don't have the resources that you need.

I object to the terminology they used of "He told us to go home and prepare for the worse but hope for the best." Lung cancer is not a death sentence. There are tons of resources and treatments out there that can help him beat this disease.

If he has not been to an Oncologist yet, I recommend that you DEMAND this to happen immediately. If the local hospital is not moving fast enough, get him to a larger facility. Don't wait for the medical team to respond, be pro-active and insist on him getting treatment immediately.

Once you get more information on the disease, I recommend that you go to http://www.cancergrace.org and tell the good folks there what is going on. They will not give you a diagnosis, but can give good advice on next steps.

I wish you the best, and hope you can get action taken as soon as possible.

Judy in MI

[dianew]

I can't add anything really to all the good advice the others have given, but did want to welcome you to the site. As Randy said, this is the hardest time you are going through now. Once you have a treatment center, oncologist and treatment plan in place, things look better.

Please come back often and let us know how your Dad is doing.

Diane

[ts]

Hi Tonya,

I'm sorry to hear your Dad's diagnosis and the toll it is putting on you and your family. He's very lucky to have you all. The financial costs of cancer treatment can be enormous. As difficult as it is to think about that aspect at this time, it is worth having someone in the family be the point person on this. There are oncology social workers at most cancer care centers (frequently associated with a hospital) that can assist, as well as on-line resources that can talk to you about the options.

You can arrange for your own 2nd opinion - and it is actually better to get one before any treatment begins because once treatment starts, you kind of want to see it through and see if it works before discarding it. If the first treatment isn't the right one, sometimes it is difficult to make up for that lost time, or to get the best option. For instance, if surgery is an option, having radiation first can make it much more difficult. Each patient is different and needs to be evaluated based on their performance status, cancer type and stage, and wishes. But there are some pretty standardized approaches based on these criteria. A second opinion may do nothing more than confirm the treatment plan the original team has recommended, but even that gives you much peace of mind. Treating close to home has its benefits as well - commuting isn't fun, nor is not being home when you don't feel well. But I don't know what quality of treatment is available close to home.

Some people have had wonderful experiences with CTCA - they tend to really like private pay clients as some of their treatment choices may be less easy to convince insurance to pay for (or that is my understanding, I may be wrong.) OSU? Sorry, I'm not figuring out where that is close to your Dad. Any chance it is associated with a research/teaching hospital / cancer center? That would be great.

Take care - once a plan is in place, things will feel calmer. It will give everyone something to do and focus upon.

[jaminkw]

Tonya, welcome and my regrets that your Dad and your family have to go through this. I just want to offer my experience as a "self-pay" cancer patient. No one really wanted me without insurance and one facility in Tampa refused to even see me. Fortunately, one of the most desirable hospitals in my area, MDAnderson of Orlando which is a satellite of MDA in Houston, agreed to let me come and get a dx. They had identified the cancer at a local hospital by cell analysis when I had pneumonia so this may have been considered a second opinion. I think not, though, since I had not been staged nor had I seen an oncologist. Long story short, after my dx the oncologist at MDA went to Finance and I was in for treatment. We paid as we were able as treatment progressed and then they kicked in with "forgiveness" to the degree our financial statement with their Finance Office indicated we could not pay. I don't know how common my experience is and I am now on Medicare with a supplement policy, but I thought my experience was worth sharing.

Good luck to you and your family.

Judy in KW

[Alan]

Everyone here is just trying to help and want the best for your dad. I hope you're not completely confused by us. We're trying. CTCA accepts all kinds of insurance. don't be misled. The phone call is free. second opinions are a necessity. If for one minute, you're oncomfortable with a prospective dr., you may want to listen to that voice in your head and move on. I know you'll get it right.

[TonyaJ]

I am so grateful to have found this site and have the opportunity to talk with everyone and learn more. I cant imagine being turned down because of no insurance. However I do experience that with my patients. Its so sad. There are so many hard working people out there but are unable to afford health insurance. That however is a whole nother can of worms and I am very opinionated about but will not go into it.

Being in the medical field I know of the Lung Dr my dad sees and he is a very good Dr, but when you tell me, my daddy and my mom to go home and prepare for the worse but hope for the best, you just lost my good thought of you.

Again I want to thank everyone for their advise, stories and encouragement. It has actually made me feel a bit less nervous. I will keep everyone posted every step of the way of our journey.

Tonya

[cat127]

WIthout knowing where exactly you are in WV, I just wanted to add that you can also look into an oncologist in Pittsburgh. My sister's dr is a lung cancer specialist at Allegheny General and we adore him. He's a great mix of kind/compassionate and aggressive. We wouldn't trade him for anything! UPMC has a lot of oncologists as well.

[Guest]

hello tonya. your story is so familliar for me cause thats exactly how they found my lung cancer .on a accident. i was supposed to have hernia surgery when my dr sent me for blood work and a c.a.t scan and they found a nodule on my left lower lung. well i was lucky and they did surgery and removed half of my lobe and got rid of it. i didnt have to go back for no radiation or chemo . i hope your father will be as lucky as me. at the time i couldnt believe what was going on and now i realize having something else wrong with me saved my life and everything turned out for the best. i truely hope the same for your father

[jaminkw]

Tonya, just catching up after a trip (again!). Anything new to post on your Daddy? Let us know how things are going when you get a chance.

Judy in KW

[TonyaJ]

Hi everyone, sorry it has taken me so long to catch up with what is going on.

My dad has now started his chemo treatments. His first was last month and is getting them every 21 days. He just had his 2nd treatment today. They have told us that the cancer has spread to his liver and spleen and is in his ribs on the right side. His first treatment lasted 7hrs, it made for a long day. He come through it like a trooper. Then about the second day after he started to hurt all over, then his joints started hurting bad and he started having muscle cramps. He was screaming in pain. It was horrible. It lasted for 5 days than he came out of it and has been doing great. Last week he started losing his hair and is now pretty much gone.

He is suppose to be getting 6 cycles of the chemo. After the 3rd treatment they will be repeating his PET scan.

Still if a person didnt know you would not guess my dad had cancer. Other than of course being bald now, he has gained 20lbs. The nurses even at the cancer center keep asking him if are you sure you are not sick.

Thank you all so much and I will do better about keeping ya'll updated.

[RandyW]

check his pain meds. make sure he gets enough so he is in no pain!!

[jaminkw]

Tonya, glad your father is getting settled into a treatment plan. That pain is awful though and I'd want the doctors to address that. He shouldn't have to endure it. I laughed when you said he doesn't look sick and has gained 20 lbs. Same here and haven't been able to drop much of it since and I mean 4+ years. I don't like the weight but staying healthy through treatments is very important.

Thanks for checking in. We are definitely following his progress.

Judy in KW

[TonyaJ]

Hi Randy

I felt so helpless having my dad in so much pain. My dad has a bad back and typically takes Lortab when he needs it. Well his Oncologist took him off it because if he would run a fever than the tylenol in the lortab would mask the fever so she put him on morphine instead. It didnt even touch the pain. I told my mom to take his temperature and if normal than go ahead and give him his lortab. It actually helped more. We called the Oncologist and she said to start giving him motrin every 6 hrs to help with the imflammation. It did help some. Then basically after the 5th day he woke up and was feeling much better.

When he had his follow up with his Onc she told him that hopefully he will not have that side affect this time.

Thank you Judy so much for your care.

I think that with him gaining weight and not being "sick" it has made it more hard to grasp the concept of him having stage 4 lung cancer.

Hope all is well with everyone. I have been praying for all on here that I have met and havent met yet. I also keep progress on my dad on my facebook page as well , if interested in being friends anyone is more than welcome to look me up. Just let me know and I can give info. I enjoy meeting new people especially people going through what we are now.

[RandyW]

weight gain is a good thing to have ! Stay hydrated as well.

if you want post up your FB page address and we can find you!! We like to think of FB as our get away space but its also good to be able to communicate that way also!! there are some who are here and there as well. I am there a bit but always check in here and at the least read up on everyone's notes!

[TonyaJ]

On facebook you can find me as Tonya (Radcliffe) Jones. Live in Sandyville, wv. My profile pic is a picture of me and my dad. I have a yellow WVU shirt on.