Just diagnosed stage IV but have questions

2kids1dog · Regular Joined: 08 Aug 2007 Posts: 21

Hello all, this is my first post. I am a 40 year old healthy non-smoking female that never gets sick, was just diagnosed with non-small cell lung cancer stage IV last week, here is my story with questions.

I went to the hospital with severe dehydration form throwing up all night and mild right flank pain. The hospital gave me iv's and a ct scan for kidney stone. The ct scan came back with a mass in the lower lobe of the right lung (no kidney stone) at this time it was thought to be Sarcoidosis. They did a chest x-ray and ct scan of the chest and abdomin showing 4 masses and enlarged lymph nodes. With this went through a barrage of tests from blood (normal) broncoscopy (negative) and drained fluid off of the right lung (also negative for cells). It was though it was Hodgkins at this time. With this they set me up for a mediostenoscopy. They took samples of the lymph node and also a biopsy of the upper mass. At our first conceltation with our oncologist thinks is a form of non-small cell lung cancer known as pleomorphic andeocarcinoma. He has not seen this in this area and said that it should be treated as lung cancer with agressive chemotherapy. My husband and I are taking all of my test results to Mayo on Wednesday the 15th to get a second opinion and treatment. Our Oncologist here said that he is all for us doing this and will work with Mayo in what they advise. Since setting up this appointment I went for a PET scan and now was told that it was in my right lung, sternum, ribs, and liver staging it as IV all of this is still showing only on the right side of the chest.
Now for my questions:
1) The only symptoms I am showing are a dry cough at exhale, and the right flank pain off and on.
2)Does anyone know of this pleomorphic andecarcimona? There isn't much out there for this on the web. What is treatment?
3) No signs of cancer cells in the pleursey fluid in the area of the supposed mass and blood work negative and all broncoscopy samples negative. Seems unclear to us.
4) Is Mayo the place to go is there others better? We just want answers and want to get this treated.
5) If so for the above diagnosis. What is the prognosis, what should we look forward to?
6)Only the PET scan showed the activity in the sternum, liver and ribs. The ct showed the masses and lymph nodes only. Another thing that doesn't add up.

We have been reading many of the forums and have read some touching stories. We have added all of you to our prayers. This has been a plethera of emotions and questions running through our heads. The last three weeks have been like I have been going down a rung of the ladder every time we talk to a doctor.

As others on the sites, I have a huge support group praying for me and my attitude so far has been "I WILL KICK IT'S BUTT!!"

Sorry for the length, a lot has happened, just needed to get it out and any assistance will be greatly appreciated.

Thank you and Bless you all.
Tina and my family
_________________
I Will Win!!
Diagnosed-8/15/07
1st Chemo-8/20/07

Conquered-

DeeVQ · Regular Joined: 02 Aug 2007 Posts: 18

Tina,

First of all I would like to say that you are in my thoughts at this difficult time. To be honest I knew very little about Lung cancer until my Dad was diagnosed on 13th July 2007. All I can offer you are my thoughts and prayers, and that I have found great comfort in using this site the last 2 weeks and I am sure you will too. Everybody here has either been diagnosed with lung cancer or has a close family member or friend who has been diagnosed with lung cancer.
It is amazing how much information you will gain access to through using this site. Its not that my Dads doctor hasnt been helpful, but I find you can learn a lot more from other peoples stories as Doctors tend to beat around the bush when it comes to prognosis or details on how things will progress. Maybe it is that they want people to focus on the positive rather than the negative but I feel that when you are given the news that you have lung cancer it is the "not knowing" that seems to be the hardest. My Dad asked his doctor straight out "look can you just tell me have I got weeks? months?years?..." but the truth is that no one knows. I have read stories on this site from people who have been diagnosed with the most extensive types of lung cancer possible yet they are still here to share their stories and I find that very uplifting. You will read many posts from many people going through the exact same treatments so you will be able to ask questions and just discuss your feelings with people who genuinely understand. I know its not easy, but you have come to the right place. Even if you havent any questions to ask you can tell people how your own treatments are going as these will provide valuable information to others who may be going throught the exact same thing.
Im sorry I havent got any information for you. I just wanted you to know that you are not alone, and I think if I can even help you a little by letting you know that, well then I have done something small.
Keep smiling Tina, God bless you and your family,
Dawn (Ireland)

2kids1dog · Regular Joined: 08 Aug 2007 Posts: 21

Dawn,
Thank you for your thoughts and prayers. I agree with you on the doctors concentrating on the positive. Right now we just want all of the answers and what I am going to beat. It's easier to concur a goal if you know the whole task. I have read many posts on this site and if anything I have learned is that this site is a great tool for knowledge and emotional assistance. We will also pray for you and your father, I hope that you get the answers/results that you are looking for.

God Bless your father and your family.
Tina
_________________
I Will Win!!
Diagnosed-8/15/07
1st Chemo-8/20/07

Conquered-

brainman

Tina, I am very sorry about your diagnosis of NSCLC stage IV!

Q. 1) The only symptoms I am showing are a dry cough at exhale, and the right flank pain off and on.
A. Often, symptoms of NSCLC only appear after the cancer has progressed. Unfortunately, your story is not uncommon.

Q. 2)Does anyone know of this pleomorphic andecarcimona? There isn't much out there for this on the web. What is treatment?
A. An adenocarcinoma is one of the cancers included in the general category of non-small cell lung cancers. Pleomorphic is a pathologist's term that just means that the cells or of different sizes and shapes.

Q. 3) No signs of cancer cells in the pleursey fluid in the area of the supposed mass and blood work negative and all broncoscopy samples negative. Seems unclear to us.
A. This is a good sign. It means that the pathologist could not find any cancer cells in the fluids surrounding the cancer or in your blood. As your medical team what the pathologist means by "seems unclear to us." Is there some doubt as to what stage the cancer is??

Q. 4) Is Mayo the place to go is there others better? We just want answers and want to get this treated.
A. The Mayo clinic is a excellent place to be! They have some of the best doctors in the world and some of the most advanced diagnostic and treatment equipment.

Q. 5) If so for the above diagnosis. What is the prognosis, what should we look forward to?
A. It would be best to speak with your own medical team about prognosis since it varies from one individual to another. However, in general, the prognosis is not good. Remember that a prognosis is just a statistical probability. There are long-term survivors. Plan to be one of them.

Q. 6)Only the PET scan showed the activity in the sternum, liver and ribs. The ct showed the masses and lymph nodes only. Another thing that doesn't add up.
A. Different scans are better to detect cancers in different parts of the body. A PET scan is usually used to detect mets from lung cancers.

Tina, you are in my thoughts and my prayers. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

bradystacey

Dear Tina,

I am so sorry that you are having to go through this. The shock of getting a diagnosis like that is stunning. Your case is a lot like my mother's. She was a non-smoking female who was diagnosed Stage IV with mets to the brain. The only symptom she had was a mild cough and since she was a non smoker in otherwise great health, her doctor didn't pursue the issue. Had we caught it sooner, who knows what the outcome would have been?
The best advice I can give you is to get to a major institution, like Mayo. My mother found so much help, health and hope at MD Anderson in Houston. Her doctors in New Orleans had pretty much sent her home to die. At Anderson the resources and opportunities were so much more plentiful and it made an unbelievable difference in her fight.
The other thing you need to realize is that statitstics are just numbers, nothing more, and just averages at that. They're not a reflection of your future or the strict rule of how things will go for you. Believe, believe, believe that you will be in that percentage that makes it.
Also, know that medicine and treatment in this area is advancing at a tremendous rate. New drugs are coming out all the time and you will benefit from that. And being a non-smoker means you'll probably respond to treatment better than the average.
Here's what I want you to know. My mom was diagnosed as Stage IV 2 years ago. She just recently passed but we got a full 2 years that the statistics didn't say that we would have and it's because treatments are advancing. Her doctor's goal was to keep her going for as long as she could until more drugs became available. It unfortunatley got ahead of us but bear in mind that had she been diagnosed 2 years earlier, the treatments she received (especially Tarceva), wouldn't have been an option. She lived 2 years with stage IV and you are already 2 years into more advanced treatments than she. The point is, Stage IV, is not an immediate death sentence. You can do this.
Meet your treatments head on in a strong and brave way, even when they scare and overwhelm you, and at times, they might. And don't ever quit. I'll be praying for you.

Stacey

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1135

Tina,

I'll write more later, but wanted to say how sorry I am about your diagnosis. Take heart, have faith, and stay tough.

I'm tired now -- hubby was in hospital and is now home. Will write again once my head is back on my shoulders.

PBJ

2kids1dog · Regular Joined: 08 Aug 2007 Posts: 21

Hello all,
Thank you so much for your thoughts and concerns. I just finished with my consultation with an oncologist at Mayo. They confirmed what was thought to be. They are stating that it is a sarcomatoid carcinoma. In the areas stated above, but appears to have just started in the liver, but still making this a stage IV. Their recommendation is chemotheropy with carbolic and taxinol (not sure of spelling) this they say is a general non-small cell chemo treatment. They were saying that the cells are differentiated with not a good sign to the true type. Does this sound like a plan that is proper treatment or are there other options that we should ask. We are going to talk to our local oncologist for his review of Mayo and his recommendation and start treatment. As this is happening we will send all of the results down to MD Anderson. We greatly appreciate all of the support both from this site and from our family, church and friends.
Again, we pray for all of you for your assistance, struggles and losses.
We will keep posted during our struggle and learning to hopefully in the future help in ways as all of you are doing now for us.

Bless you all.
Tina
_________________
I Will Win!!
Diagnosed-8/15/07
1st Chemo-8/20/07

Conquered-

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1135

Tina,

Carboplatin/Taxol is the frontline treatment for most patients. Am I understanding you correctly that the primary is liver cancer with mets to the lungs?

M.D. Anderson is the top place for lung cancer in the U.S. Mayo, Sloan-Kettering, etc. are all top notch too, so you have the best you possibly can get right now!

Much good luck to you on this journey.

PBJ

2kids1dog · Regular Joined: 08 Aug 2007 Posts: 21

PBJ,
Thanks for your reply. They are saying it started in the lung and has spread to the liver. As far as Mayo could tell there is only a small amount showing on the liver at this point. Right now just waiting on the doctor to call with the time of first chemo. He did say that it would be every three weeks and last about 4 hours. Any tips for nausea? Any suggestions would be greatly appreciated. I had zofran in the hospital and still had lots of nausea and occasional vomiting from the pain meds.

Everyone is in my thoughts and prayers.
Stay strong.

Tina
_________________
I Will Win!!
Diagnosed-8/15/07
1st Chemo-8/20/07

Conquered-

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1135

Tina,

Ask them for Kytril. It is the next generation of anti-nausea. Expensive, but worth it.

Best of luck on that chemo. Hang tough -- we're here for you.

PBJ

2kids1dog · Regular Joined: 08 Aug 2007 Posts: 21

Hello again,
Did my first chemo today. Chose the combo of Carbo/Gemzar. My onchologist said that this would help with nausea but not lessen the effect from choosing the other option of Carbo/Taxol. Before getting my chemo they gave me an iv with Kytril (thanks pbj for the advice) so far 7 hours later with no nausea. This plan is today, next Monday then the third Monday off (that week though I get my porta cath). After the second round I will get a scan to see if it is working. If it doesn't work they may switch to the Carbo/Taxol.

This may sound funny but, I almost feel better now than I have in days? I think it is because I have finally received answers and started to attack.

I also talked to the oncologist at MD Anderson and I am sending the information for their review.

Again, I will be praying/thinking of all of you. Thank you for the support and advice.
Tina
_________________
I Will Win!!
Diagnosed-8/15/07
1st Chemo-8/20/07

Conquered-

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1135

Tina,

Glad to hear you are started with the chemo. Always gives peace of mind to know you are doing something to attack the cancer. I hope they gave you oral medication to take for nausea also for the next several days. My husband gets by on compazine, but everyone is different.

I did find out today that Kytril and Zofran are very similar, but I guess some people handle Kytril better. On a molecular level they are almost identical. Another new thing learned today for me! (Today was a chemo day for hubby too.) The nurse said they kind of tailor which anti-nausea meds to give based on the side effects the patients have. Zofran tends to constipate, so if the chemo gives a patient diarrhea, they'll give them the Zofran to offset the diarrhea. Interesting take. These chemo nurses are so very knowledgeable. I think you'll find that you can get a lot of information from them because they see the patients often more frequently than the oncologist.

If they gave you some steroids in the pre-chemo infusion, you will feel pretty zippy. I always like the extra boost my husband gets from steroids on the day of chemo. He gets rosey cheeks the next day too and looks pretty healthy! Wink

Good luck on the rest of the week and I hope things go well. Let us know of any side effects, etc. -- we're here.

PBJ

brainman

Tina, I too started to feel better once my treatment began. For me it was that, to some extent, I was actively doing something to address my cancer and not just sitting and watching time fly by.

It is good to hear that you are tolerating the chemo. Keep us informed.

You continue to be in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

2kids1dog · Regular Joined: 08 Aug 2007 Posts: 21

Good afternoon all,
Doing well today. I did get sick first thing this morning but otherwise doing good. They gave my Kytril with a steriod prior to chemo yesterday. They also gave me Kytril to take this morning and tomorrow morning plus compazine to take as needed for nausea. I hope this is the worst of it as fas as the nausea goes.

I continue to think and pray for all of you and am greatful for all the support and knowledge I am receiving on this site.

Thoughts and prayers to all.
Tina
_________________
I Will Win!!
Diagnosed-8/15/07
1st Chemo-8/20/07

Conquered-

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1135

Tina,

Well, they've got you well armed for the duration at least! Hope tomorrow goes a little smoother. You'll be a chemo-trooper in no time!

God bless,
PBJ

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