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Newly diagnosed stage 4 Adenoesphogeal cancer; meta to lungs

ISO Remission
Posts: 1
Joined: Jan 2013

Just found this site. Need support and info. Newly diagnosed. My first Oncologist was Dr. Doom and Gloom.My second Oncologist is Dr. Sunshine. I am so confused and scared. I live alone. (I have a cat I adore). 

The first oncologist was in a small town and had a non-USA medical degree. He told me one week that I had 6 months to live without chemo and 1 year to live with chemo and it was palliative only. He ordered a pet scan and it showed NO cancer in my lungs. He called me up and said that I was not stage 4 and chemo would put me into remission. The following week I get a call from him asking me why I hadn't told him I had had a lung biopsy in the hospital when he was the one that ordered it! He then told me I was stage 4 with 6 months to live without chemo/12 months with chemo Because I had "numerous nests of malignant cells confirming to the esophogeal cancer. 

I was very confused and agitated by the you are going to die, you aren't going to die, you are going to die; I was an emotional wreck who could barely function by this time. 

My family doctor told me to use my intellect, do research on the Internet. He said you WILL find a world class expert in an a major city about 40 miles away. I went home and found a surgeon affiliated with a major university that pioneered a surgical technique. I made an appointment and saw him  in in a few days. He referred me for chemo to shrink the tumor before surgery can be done. 

The first question I asked my new oncologist (who is also professor at the med school was how could I have cancer in the lungs that shows malignant in a biopsy but does not light up on a pet scan. He said lung cancer not active so there is a good chance it will be killed by the chemo and chemo will shrink espho and then it can be surgically removed. 

Question #1:  Who do I believe? Dr. Doom and Gloom did damage and created doubt;and so did the Internet. Grim statistics. OR do I believe Dr. Sunshine Professor?

Question #2: How do I stay positive and optimistic when I live alone? The doubt, the uncertainty caused by Doom and Gloom. Sometimes I just think D&G was blunt and Dr. Sunshine is blowing sunshine up a certain orifice. I am a big reader and some of the drugs preclude me from reading. So my lifestyle has changed for the worse. 

Question #3. Has anyone else had cancer that biopsies malignant but did not show up on a pet scan? 

 

Thanks, ISO Remission 

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

You are a statistic of ONE! Yes, you'll have to do some research, but usually Stage IV is inoperable. There are a few circumstances where it is an option, but your medical team has to be on the same page. Where are you? What exactly is your diagnosis and who the heck are these docs?!! I think you need another opinion for sure.

You may live alone, but you most certainly ARE NOT ALONE anymore!! There are SEVERAL survivors here and elsewhere that can help guide you! Don't be scared. Just be ready to fight!! We are here to help you the best we can!

About question 3, I don't have that answer, but I will ask around. I will send you a personal message here. Check your CSN mail. There is a section labeled CSN Mail. You should have a message from me.

Keep us posted! The more specifics you share about your docs and diagnosis, the more we can help!

Chat soon!

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

It sounds like your doctors have been giving you prognosis without the specific facts to support them. Several things do not match in your feedback from your doctors.

It sounds like you have been diagnosed with esophageal cancer adenocarcinoma. That diagnosis should have been supported by the results of an endoscopy with biopsy samples that tested positive for EC, a PET or CT scan that examined the remainder of your body for cancer, and an endoscopic ultrasound that defined the level of penetration into the layers of the esophagus the tumor had progressed, and possible local lymph node involvement.

Those tests should have resulted in a specific staging diagnosis that takes the form of T (a number), N (a number), M (a number). The combination of those elements give a specific "stage" for your cancer.

Here is a reference that describes the staging process and recommended treatment approaches:

http://www.upmccancercenter.com/pdq_xml/cancer.cfm?id=54

I am a bit confused about the lung biopsy results and potential surgery. If indeed you have a lung tissue biopsy that shows esophageal cancer then you would normally be considered "Stage 4" and not a candidate for surgery unless there was follow up re-staging after chemotherapy and or radiation therapy that showed the malignancy in your lungs as resolved.

I would really suggest you get a medical opinion from somewhere that specializes in esophageal cancer. If you can let us know where you are located we can suggest the nearest NCI rated cancer center that has a specialty in esophageal cancer.

I would ignore your "doom and gloom" doctor’s prognosis on how long you may survive with cancer. They don't really know and they are referencing statistics that are dated and do not reflect your specific circumstances.

Let us know where you are located, who is providing your current treatment, what specific treatment is being planned, and your specific staging information if known and we can make some better suggestions on next steps.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB

Ivor Lewis Surgery  12/3/2009

Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU

Three Year Survivor

 

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