Newbie needs support and encouragment

[hof411]

Hi everyone,

I just happened to stubble across this website last night. I've been using CSN and this seems to be a much more active board.

In am in desparate need of some encouragement. My dad's profile is listed below. We are so discouraged and mad right now. Dad feels that all the pain and suffering he just went through was for nothing.

We're looking forward to our appointment this week at The James. I'm not quite sure what to expect, but I'm ready to ditch his current oncologist.

I have a question about 2nd, 3rd, even 4th opinions. I told my dad last night, we'll just keep going until we find a doctor that tells us what we want to hear. We want the tumor resected. I realize it needs to shrink, but our current dr. says no way, no how. If we aren't pleased with what The James has to say, what do we do next? Dad is supposed to started 2nd round of chemo 9/27 (carbo/gemzar) with current doc. If we are happy with the James, we'll start his treatment there. I'm not sure what to do as far as getting 3rd and 4th opinions (if needed) while dad is in treatment. I don't want to stop treatment, so what do I do?

I may be jumping the gun, but does anyone have any further suggestions on where to go? I've read about Sloan-Kettering, Cancer Centers of America, Cleveland Clinic, MD Anderson. They all sound great. How do you choose?

Thank you for any advice and encouragement.

PS: I'm figuring out how to use this site as I go. Please forgive me if I post in the wrong place.

[MsC1210]

Hello Hof411 and welcome!!

I am sorry you had the need to stumble across us here but glad you did. You have come to the right place for support, information and encouragement!

I cannot offer much, personally, but will tell you this. A 2nd, 3rd, 4th etc, opinion is DEFINITELY never a bad thing! You will hear that echoed over and over here.

Document any and all appointments, treatments, etc in a notebook so you have everything in one spot. Write down the questions you and dad have for the dr or nurse so you do not forget to ask them. Cancer is an overwhelming ordeal and it is so easy to forget things.

Please keep posting, look around at the other forums and ask any and all questions you have. This is a wonderful and caring group here, full of compassion, knowledge and we are more than willing to do what we can to help you out and offer support.

My thoughts and prayers are with you,

Chris

[Welthy]

Hof,

So sorry you had to find us, but this is a tremendous resource place for information and emotional support.

Don't let the "palliative care" term throw you off. My husband has been under palliative care for 18 mos now. It is just the term they use for the treatment of late stage cancers and doesn't mean the therapy isn't aggressive. I flipped out when they first ran that term by me too! Read my Tony's bio and you'll see that he has been treated very aggressively. Second opinions are always a good idea if there is any question marks in your mind about how aggressive the onc. is willing to treat your father. We lucked out and found a great onc. right away. Your Dad sounds as strong as my husband was so he probably will be able to tolerate more therapy than someone who starts out in less than perfect health. It's a real bonus that he was as strong as an ox!

May God bless you and yours as you continue on this journey.

Welthy

[Ry]

Hopefully you will be happy with your second opinion-- and the treatment options. Do you know if your father received the maximum radiation? That is important to know if you are considering surgery. If an area is radiated too heavily surgery is no longer possible because the area will not heal. As you can see from my husband's profile he was not a surgical candidate and he is doing pretty well. Good luck and let us know how things go.

Rochelle

[Raindog]

Hi and welcome Hof411,

So sorry about your Dads DX, I know of the anger and frustration you are feeling.

Get as many opinions as you need. I too was mad as hell with the first couple of Doctors that treated my Dad. We carried on until we found an Oncologist that had the attitude of "failure is not an option".

I wish the very best for your Dad and your family durring this difficult time.

Warmest regards,

-Rod

[ginnyde]

There are a couple of people here on the board that have Pancoast tumors. Kasey comes to mind first. I believe that 3 different drs. told her no surgery. Then someone here told her about NIH and lo and behold she had surgery.

Unfortunately our Kasey is away with her girlfriends for the week. Try PM'ing her or MHutchings for more information.

Good luck.

[ginnyde]

Here is Kasey's story.

My story, like most of everyone's here, would more than likely be a book if told in its entirety. Trust me, I am not going to do that here. However, I do feel there are some aspects of it that I feel so much the need to share with all the very special people who make up this site. So here it goes - in skeletal form and for whatever it is worth!

My primary care physician told me over the phone that the CT scan certainly looked just like lung cancer. YIKES! Bronchoscopy done a few days later showed nothing. Boy was I happy but not for long. I was told a biopsy was needed - simple to just make a little slit and grab a little piece. PROBLEM! First indication that what I had was a humdinger. Had to be a CT guided needle biopsy. Took a week to set it up for the surgeon had a difficult time finding someone to actually guide the scan. YIKES again! Nine days after the biopsy we - husband and I - met with the pulmonary doc who was coordinating everything. He had been waiting for a call back from the thoracic surgeon and hadn't gotten it yet, so we proceeded without his input. It is cancer. It is early stage. It has not spread. You are young (5) and healthy - no heart problems, no diabetes, not anything wrong - just lung cancer. We can just go in and cut it out, have a chemo treatment or two and you are cured. My husband and I practically fell to our knees in praise of God. We were at the desk making the surgeon's appointment when we were called back to the office. Seems that now the surgeon had called and surgery was NOT an option. We would be making chemotherapy and radiation appointments instead. Now it was 5:00 - closing time. So that was it, no more explanation or anything. We made those appointments and headed for home.

Okay I'm making this way too long. The next day I had a call in to the pulmonary doc with a question. He called me back at 4:45 on Friday. He answered my question and then offhandedly mentioned the term pancoast tumor. We hung up. It was the weekend. I know how to use the internet. YIKES three times over. Pancoast tumors are VERY bad news! First thing Monday morning guess what I was doing? And guess who was on vacation?

Not one doctor here in my city had ever seen a pancoast tumor. So you can see how EASY for the misinformation at the biopsy report! I went to Sloan Kettering for a second opinion. They agreed with treatment recommended here and NEVER mentioned they have a renowned pancoast tumor surgeon there. So I began radiation and chemo locally. It took me a while before I realized it was for palliative purposes only. I was told I was incurable, never would be curable, and would NEVER be a candidate for surgery. I was told there was no light at the end of my tunnel. I was told that if the November CT scan did not show significant shrinkage that I would not see flowers this spring. YES, believe it! I was told all that!

Well, I felt that was just not satisfactory with me. Off I went for a third opinion to a very reputable cancer center near Philadelphia. I was sent away by the pancoast expert there. I was in bad shape if a pancoast expert turned me away. I planned my funeral and took care of all those things one needs to take of at a time like this. I prepared my husband whose first wife had been claimed by cancer twenty five years earlier at a very young age. We prepared the children for losing another mother to cancer. It was a very dark time here.

This whole time, September until mid November, I searched the internet day and night. I am sure most of you can identify with searching at 2:00 and 3:00 in the morning! I was a pancoast expert. By ACCIDENT one morning when I googled whatever I googled including the word pancoast, this website presented itself. I found Donna G. who was listed as a 7 year survivor!!!!!!!!! FIRST positive thing in all this time. I PM'd her. She PM'd back with another pancoast survivor, mhutch, (aka MaryAnn). I PM'd her. She PM'd back. We went back a forth a few times and her surgeon's name came up. He is at the National Institutes of Health in Bethesda, MD. She is in MD and I am in PA. We are neighbors. So I googled the surgeon. I EMAILED the surgeon. He EMAILED me back that same day!!! He saw me the following Tuesday. And the 6 words he said to me are branded into my brain. He said, I think I can help you. MY GOD!!!!!!!!!!!!!!!

So I had surgery and follow-up chemo. I am healing and getting stronger and feistier every day.

The point of MY STORY here though, is the role this website has played. For me it literally SAVED MY LIFE. No matter how long it may be, I DID see flowers this spring and I CAN see a light at the end of my tunnel. I feel each day a gift from all of you here. I am shy and do not post often. But I read EVERY day. I feel like I do know many of you. I read so much. I missed Frank when he was away. I was at ALL of Cindi's parties. I wasn't sitting up at the bar though. I was at the table back in the corner, too shy to join in. I anxiously await test results with you and celebrate when they are good. I cry and pray when the news is less than what we would want. When I come here I am comforted by those of you who are the caregivers. I am filled with hope by those of you who are surviving and thriving. I receive courage from those of you fighting the hard fight at the moment. Finally I get the sense of family, of people who understand and care and support in ways those not here cannot do.

So thank you, first of all to Katie and Rick for the website. Thank you to Donna for caring enough to PM me and giving me the first glimmer of hope. And finally to MaryAnn who led me by the hand to my life saver. I am indebted to you all forever. Thanks to everyone here for what you do every day- reach out your hands to those who need it.

_________________

[marym]

Hi,

It sounds to me that your doctor is being aggressive - he has told you 3 different option they will try. Perhaps he doesn't want to overpromise. I've have found the 2 thoraxic onc to be much more stoic than my 3 radiation onc.

I also feel any stability or decrease is postive. If you feel that the statement of pallative and uncurable is bothersome - it bother us all, but it the truth.

I'm sorry that your Father's results were dissapointing - it can be such a let down. I took carb/genzar and had some good success with it.

Also, if you feel that the onc isn't meeting your needs, by all means seek another opinion.

Hang in there!

Mary

[Donna G]

Hi, I am a nearly 9 year pancoast tumor survivor. I had chemo and radiation first. When they took my tumor out they told me it was dead, just scar tissue. I also had chemo after surgery, which was the plan from the beginning. I sure hope you find another doctor. Not only Kasey but MaryAnn also had a pancoast tumor and they were able to take her tumor (along with some ribs). Please keep us posted.

Donna

PS, I think everyone I have met with a pancoast tumor had pain that sent them to the doctor.

[hof411]

Thank you to all of you. I feel very fortunate to have found this site. You are all such wonderful inspirations. I am amazed at the number of responses I received and how quickly I received them. What a God send. I will keep you all posted on dads mission.

Thank you,

Diane

[ma's kid]

Wanted to welcome you to the board even though I cannot add to what has been suggested or posted.

We really are like family here, so welcome to the family..just sorry there is a need for you to be here but this site is truly a lifesaver! (people aren't so bad either, LOL)

Many prayers and please keep us posted

Libby

[Fred]

Diane,

I sent you a PM from Kasey's log on earlier. Please respond to me - Fred - and not to Kasey. As you know she is away this week.

Fred

[Ellen B.]

Hello Diane,

I hope that you have been able to contact Kasey or MaryAnn for more info on treatments and good 2nd/3rd opinion docs.

Like Rochelle said, it's important that your father didn't recieve too much radiation.

Henk also has a IIIb pancoast tumor. The tumor had eaten a hole through(!!) 3 vertabrae! He was inoperable, even after chemo/radiation. At least, that's what his docs told him before the treatments. 2nd opinion docs told the same.

However, after treatments, the team decided that Henk is operable BUT that surgery is still very risky and maybe even unnessary. They strongly advised against it and advised to 'wait and see'. So now we wait and see. Until now, Henk is doing well.

So, don't despair if surgery isn't an option!

Ellen.

[ernrol]

Hof,

I was told my cancer was inoperable, and there was no cure. I have been cancer free since November. I went to Sloan Kettering for a second opinion. They usually want to give a second opinion before or between treatment cycles. You can call and ask. And make an appointment between cycles. Stay positive. There is no cancer that someone has not beaten.

Ernie

[bauner95]

Hi,

My husband is a patient at OSU East. This was his second opinion and it was the best move we could have possible made. I wanted to share his story with you so that you could see how hard his oncologist tried to help him and much help he really was. Please feel free to pm me for more information. My husband is a member of CSN also. As you will see when you read our story, it is so important to find an oncologist who is willing to be as aggressive as you want and are physically able to be. The James is great! We wouldn’t be where we are today without his oncologist. He never gave up and fought hard to find others who were willing to do the same. Good luck at the second opinion.

I am the caregiver of my husband, Mike. We are both 34 and we have a son who is 11 and a daughter who is 5. Here is our story.

First let me start by saying Mike is a veteran and we were dealing with the VA. Mike had a CT done in December of 2004. When his doctor called us in to go over the results, her exact words were "It can not be cancer, because with the condition of you lungs, you would already be dead." Well, we took that as good news. She then said; let's do a PET scan just to rule it out. We thought ok. We have to check out everything so we can find out what is really wrong. She referred us to Cincinnati, OH to the VA hospital to have the test done. Well, to our surprise, the large spot on Mike's right lung showed uptake on the scan. They say to us that the doctor will be in touch. Then we are 15 minutes from the hospital on our way home when his cell phone rings and it is the pulmonologist. They want to meet with us immediately. Well, it was a Friday afternoon and since we were 15 minutes away, the doctor did not want to wait for us to come back to the hospital. Mike said tell me over the phone so we don't have to wait until next week and worry. So they tell us as I am driving down the freeway that it is cancer and they want him to come next week to have a biopsy done. We go the next week for the biopsy. It comes back positive. We go the next week to meet with the surgeon, whose nurse tells us we need to apply for social security. Boy what a shocker! They schedule surgery for the following week. At this point, we are stage I. Boy were they moving fast. We expected for them to resection his lung, take the cancer out and be done. They told us that when they got in there, they would take some more samples and do quick freeze biopsies in the operating room before continuing the resection. They took Mike to surgery and I looked at my watch and said they should just be getting started. I no more got the words out of my mouth and the surgeon walks into the waiting room. First he says our name, only it did not sound like Miller. Still to this day I am certain that he said the wrong name. I did not even recognize him; remember I had only seen him twice. Finally my father-in-law says over here. The doctor stands across a waiting room full of people, me, Mike's parents, our 9 year old son and 3 year old daughter and two of our friends, and tells us that it has spread to his lower right lobe and that he saw a spot on the chest wall, but no biopsy was taken, and that the spots in the left lung are suspected to be cancer too. Still standing across the room and in front of my children, he continues to tell us there is nothing that can be done and that he has probably 6 months, and at best a year to live. How do you process this? My son is asking me questions, like mom, is dad going to die? How do you answer that? The doctor tells us they are moving him to ICU (procedure) and then he will be moved onto the floor in the morning. When we go back to see Mike, we realize that he does not know that they could not do surgery, so I have to tell him, my next impossible task. Well, we talk to him and he says the doctors don't know these things. It is not in their hands, but in God's hands. I am sure this is the right attitude to have, but that was really hard for me to hear. Mike recovers and goes home three days later. At this point we are stage IV.

At this point I decide that maybe the VA is not the best place for us to get treatment. I call the cancer center near our house and try to schedule an appointment. The lady on the phone is telling me that they have no appointments until June. I am freaking out, because we can't wait that long. We have to do something right now. While we are on the phone scheduling the appointment for June, she says oh wait. Now there is an appointment on March 9th, the day after his follow-up in Cincinnati. This was my first realization that God was working with us and he was leading us to the right doctor. We go see the oncologist who is honest and wants to begin chemo the next week. I ask if we can wait until the following week, because he wanted to start chemo on Mike's 33rd birthday. Me thinking it could be the last, I did not want to spend it getting chemo. So he schedules Mike to have a port put in on March 16th and he has his first chemo on March 18th. After four rounds of chemo, Mike has a CT and the main tumor has shrunk over 60% and none of the other spots are showing. Praise God! He wants Mike to have four more rounds and then if the response continues on this path then he wants him to see a surgeon. Well, he gets four more rounds of chemo, (Forgot to tell you what, Taxotere and Carboplatin) and he adds Avastin to the treatment. He does a PET scan at the end of those and sees the same response. The tumor has continued to shrink with no other spots showing.

He called hospitals all over to find someone who would even consider the surgery. Cleveland Clinic would not touch him; the surgeon said what if we kill him. OSU would not do it either. His next choice was the University of Pittsburgh. They agreed to see us. He referred us to a surgeon who did a wedge resection on November 11, 2005. He biopsied other spots showing in Mike's lung and all came back negative. He also did a biopsy of the spot on his chest wall, again negative. At this point, the surgeon says that Mike is cancer free. Mike’s last appointment was August 1, 2006 and he is still cancer free. His next appointment is November 11, 2006. Well, sorry this is long, but it is where we started in December 2004 until now.