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Any Squamous cell survivors here that didn't have surgery?

ptom
Posts: 35
Joined: Jun 2012

Are there any squamous cell EC survivors on this board who have not had surgery? When were you diagnosed, what was your staging and are you NED?

I'm hoping for answers to help ease my mind (if that's possible when you have EC!).

ptom

llamp0922
Posts: 40
Joined: Jul 2010

Hello Ptom,

Please tell us more about yourself. I am sorry that you are here, but there is a wealth of information available on this board.

I was diagnosed with squamous cell carcinoma in my upper esophagus five years ago, on Friday, July 13th. My cancer was eventually staged at 3B-inoperable, due to the tumor obstructing 50% of my trachea. The mass was very large. I had to take steroids to swallow any liquids. After a tracheostomy and a g-tube placement I began treatment on August 20, 2007. I did two rounds of Cisplatin and 5 days of 5-FU, concurrent with 39 IMRT radiation treatments. After two rounds of Cisplatin, I was taken off the drug due to toxicity. I had my final two rounds of 5-FU, and treatment concluded in early November, 2007. My PET scan in late December 2007 showed NED. Follow up CT scans have continued to show NED. I am very blessed! Treatment was not easy, and after effects do continue, but I am here.

If I had the option of surgery, even today, I would take it. That being said, I live a full and wonderful life, and look forward to hearing that I am in remission after my November CT scans.

Peace, Love and Positive Thoughts!

Lisa

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

He opted to take chemo & radiation which completed in November. His tumor showed a good response but I believe there was still some indication of live cancer following treatment completion. Unfortunately, his oncologist did not push for surgery and he took that and ran. Surgery is scary - I get that.

Unfortunately for my friend, surgery would have been suggested initially. But now his cancer has returned with a vengence. He is currently Stage IV and working with hospice to ensure comfort in his remaining days.

EC is a very agressive cancer and every option to eridicate it should be given good consideration. Make sure you have EC knowledgable doctors. You don't have 9 lives like a cat. You only get one chance at getting this right.

Terry
PROUD wife to Nick, age 49
adinocarcinoma T3N1M0 05/19/11
26 rads & 2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
NED until 05/11/12
EC spread to brain (3 tumors with a mist of mini tumors across the brain) with Leptomenengial disease
lost battle to FEC 06/19/12

oriontj
Posts: 390
Joined: Jul 2009

Diagnosed in July 2009 and began treatment in Sept 2009. He was in a clinical trial at the U of Chicago. He started with taxol, cisplatin and the trial drug which I don't remember.,.with radiation every day for 6 weeks. He stayed clear for a year, it came back in the same spot. They hit it again with carboplatin and taxol. It left some bad neuropahy and the radiation has caused fluid in between the lung linings..but his last cts have showed the cancer is what they call stable. Nothing has spread so far. He'll go back in sept for another scan. He didn't have surgery due to a location of a cancerous lymph node. Meanwhile we went for 21 days to Alaska, out to see the grand kids in Maine, many trips to Vegas, 2 weeks in Florida. He has trouble walking and can't do a lot around the house, but he's still here way beyond what we thought. So there's hope.

jan

ptom
Posts: 35
Joined: Jun 2012

For some reason I was expecting more squamous cell patients to be here. I understand it's rarer than adenocarcinoma but never guessed there were so few of us.

Thanks to all of you for your responses. I'm not a candidate for surgery due to where the tumor was located (close to the trachea) but I have had a complete response to chemo, radiation and a second round of chemo.

As of today (PET scan last Friday) I'm still NED.

ptom

llamp0922
Posts: 40
Joined: Jul 2010

Hello ptom,

Congratulations on your good scan! That is worth celebrating!

Yes, we are the minority here on this board. I have heard of few people with tracheal involvement. I did search out squamous cell and found that many of the head and neck cancer patients with the same diagnosis had similiar treaments and found success. I choose to believe that survival is possible, so it might as well be me! What is your history? My history is on my About Me page.

Stay positive!
Lisa

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Ptom,
I am a stage III squamous cell pt but I did have full chemo and radiation and three incision esophagectomy and it has been three years since dx. Congrats so much on the clear CT scan and being NED. As you noticed, there are few squamous cell pts here because now it is more rare and the adenocarcinoma is on the rise. My cancer was a result of having achalasia many years before which is a risk factor for esophageal cancer later in life. I am sorry that your tumor was in a bad location and sure hope that with the good treatment you are getting they can keep you NED. my thoughts and prayers are for you and all here,
Donna70

Ladylacy
Posts: 496
Joined: Apr 2012

My husband was diagnosed in 2010 with squamous cell of the larynx. He underwent 35 radiation and 2 cisplatin treatments. Were told after PET scan in late November of 2010 that all was clear. In February 2011 found out that the cancer was still there and in March 2011 he had a complete laryngectomy and throat reconstruction due to radiation. Everything was going good until he decided to have the puncture for a TEP in April 2012. Well to our surprise and the surgeon's he found a tumor right at the cervical of the esophagus, he couldn't do the puncture for the TEP because of where the tumor is located. It is cancer and my husband just finished another 35 radiation and 7 carboplatin treatments. He will have a PET/CT the middle of September to see what is going on. His first tumor was a Stage 3 no spread at all and this one is stage 2 with no spread. We have been told that surgery, due to location, previous surgery, and his age (75) would have a great risk.

I know that where his cancer is located is rare, what I didn't know was that squamous cell of the esophagus was rare. Learning new things every day. All I do know from this board and others is that esophageal cancer is aggressive but that cure rates are going up. I lost an Aunt in October 2011 to esophageal cancer. She fought hard for 3 1/2 years but lost the battle. She finally said enough is enough with chemo and radiation.

Cancer is horrible and I wish, like many others, that a cure could be found. Treatment is just as horrible as the disease but treatment does give people a chance.

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