EC - T4 N1

Lisa F

Hello everyone,

I am new to this group and I'm not the one with EC, it's my 65 year old brother. He was diagnosed in September, 2018. His diagnosis stated "A mass was found in the lower third of the esophagus.Two paraesophageal lymph nodes were visualized proximal to the mass. This was staged as at least T4 N1, cannot rule out more advanced N stage." At that time he had not eaten any solids for 4 months and was barely getting fluids down.

On 10/18/18 he had a feeding tube put in. It was a nightmare from the onset - infection, leaking, extreme pain etc. I don't think it was kept in more than 2 weeks. He started chemo on 10/19 (Decadron & Aloxi) and had 5 rounds (terminology?) and 28 radiation treatments which he finished on 1/30/19. He's had a total of 3 PET scans (9/24, 12/3 & 2/28). The 12/3 PET said "1. Complete metabolic and substantial resolution of primary esophageal tumor at GE junction. 2. Complete metabolic and anatomic resolution of the (previously) FDG avid gastroesophageal lymph node. 3. No FDG avid disease at this time. The 2/28 PET said "1. New, linearincreased uptake along distal esophagus without obvious anatomic correlate, is likely inflammatory rather than malignant. Continued monitoring of this area recommended to confirm. 2. Complete sustained metabolic and anatomic resolution of the (previously) FDG avid gastroesophageal lymph node and primary mass at GE junction.

My brother did amazingly well during chemo and all the way up to the last 5 radiation treatments. He was able to eat & drink again. The last 5 treatments definitely started to kick his butt and as expected, eating and drinking became difficult again. However, since that time he has had consistent pain in the esophagus area but varies in intensity. Sometime he can eat & drink without pain, other times he cannot and there is no rhyme or reason to what causes the pain. Soft things can cause pain but hard to eat things may not.

They then told us of the standard of care would be to perform a full esophagectomy but laparoscopically. He was scheduled to have that done on 3/29/19. They went in and made 5 incisions into his abdomen. In one of the incisions (the exact spot where feeding tube was) they found a 2 cmtumor which they tested right there and it was cancerous. They took a biopsy from another area and also took free fluid to biopsy. Those last 2 results will not be back till sometime this week. They did not proceed with the surgery.

I'm not sure what my questions really are - I have so many. First, has anyone gone through anything remotely like this? Is it normal for a tumor to NOT show on a PET? Since this is now a distal tumor, I know that makes this much worse but if 2 other biopsies come back negative - is there still hope? If positive - is there still hope? Would anyone recommend going for a 2nd opinion after receiving all the results?

My brother lives upstate NY (near Saugerties) and traveled to NYU in NYC(over a 3 hour commute) for all his treatments. He is my superman! If anyone lives near the Saugerties area, do they have a comprehensive cancer center they recommend?

I thank everyone who has read this and I wish all of you healing light and strength as you go through this nightmare. Please keep my brother in your thoughts - I already lost my other 2 siblings - I cannot bear the thought of losing him, he's my best friend! Peace!

paul61

A second opinion is always a good idea

Hello Lisa,

I am so sorry to hear that things are not going well for your brother. PET scans, like all other non-invasive tests for cancer, give data that has to be interpreted in light of other factors in the patient’s body. PET scans return an “uptake” value based on the amount of glucose absorbed in the tissues in the examination field. PET scans search for areas of abnormal metabolic activity that may indicate cancer cells, but they can also be affected by inflammation and other metabolic issues. It appears the radiologist that documented the findings for your brother’s scan felt the glucose uptake was inflammation related.

CT scans, on the other hand, show tissue “structural” abnormalities and are often used when patients report symptom’s as another option to isolate cancer activity. It seems before your brother’s care team makes additional recommendations about his future treatment options, they should do a full battery of tests that include an endoscopic ultra sound, PET scan, and CT scan of a field that begins at the top of your brother’s lungs and ends below his pelvis. Any suspicious areas should be considered for a needle biopsy to get a "pathologic" analysis of the tissue area.

Second opinions are always a good idea in complex situations as this. I am not from the New York area but National Cancer Institute recognized cancer centers like Sloan Kettering, UPC Hillman Cancer Center, or Fox Chase Cancer Center are obvious choices.

Wishing your brother the very best, as he defines his future treatment plan.

Best Regards,

Paul

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