New Member living with primary tracheal cancer for 14 mos

[Ladyjane]

Hello everyone,

I am brand new to this board (or any board). I was diagnosed with stage 1 lung cancer six years ago and successfully treated with a lobectomy. Last August, I was diagnosed with a rare tracheal tumor (squamous cell). Had surgery, radiation and chemo. Does anyone else have this diagnosis? I would love to know how you're doing. Thank you!

[ts]

Hi ladyjane,

Six years post lung cancer and a new diagnosis? That's so unfair! I don't know anyone with a tracheal tumor (squamous cell), but just wanted to welcome you here. It is a head and neck cancer, so you might find some responses on the Grace website as well - mainly from an oncologist or two as traffic on that part of the site is still quite slow. If you have medical questions, that is. cancergrace.org

How are you doing? The triple play isn't so easy.

Stephanie

[jaminkw]

So sorry you have a recurrence after so long. Must be devastating. Don't know much about trachial but do recall someone in the ftf group I used to attend. He was doing well, last I heard, but I think eating and keeping weight up is a big issue early on. I agree with Stephanie, cancergrace.org is your best bet for specific info. The doctors there are great and it's free.

Judy in KW

[Ladyjane]

Thank you Stephanie and Judy for your replys. I'm wishing the very best for both of you. I appreciate your telling me about the cancergrace.org link. I will definitely look at it. This last diagnosis really through me for a loop. It is my fifth primary cancer. In 1980, I was treated for pre-cervical cancer which ultimately resulted in a hysterectomy ten years later. In 1998, I was diagnosed with a adenocarcinoma of the colon, had surgery and no recurrence. The following year, in 1999, my annual mammogram revealed Ductal Carcinoma In-Situ. I had two surgeries and went through six weeks of radiation with no recurrence. In 2004 I had a CT Scan of the chest. The doctors were looking for a pneumonia and found Stage 1 squmous cell carcinoma of the right lung. I had a lobectomy and was followed every six months with scans and bronchoscopies. The bronchoscopy I had in June 2010 revealed a 3.5 cm. tumor in the middle of my trachea. After three weeks of waiting, the doctors decided to go forward with surgery. The tumor was removed and my trachea was reconstructed; however, I learned that four of my lymph nodes had in-situ cells. I was treated with eight weeks of radiation which had to be interrupted for three weeks while I was hospitalized for severe heartburn. I was also receiving chemotherapy at the same time (Cisplatin and Etoposide). My last bronchoscopy in September showed no recurrence. I was told that this type of primary cancer is literally a one in a million. I consider myself lucky at this point and living day to day. But I feel like I'm constantly waiting for the other shoe to drop. Have to get myself out of this mindset and look to the positive. Both of you are truly survivors in every sense of the word.

[ts]

ladyjane,

That's crazy! Only because I have a friend who has had three primary cancers (and some other pre-c stuff) am I aware of this - but have you been checked for Li-Fraumeni syndrome? My friend is doing well - cancer free currently and traveling this month to celebrate many things, including her daughter's 21st birthday (in Las Vegas!)

I'm way past shoe dropping - I'm watching the anvil over my head. But, yes, we do try to make the most of our good days and not be dragged too deep by the not so good ones. Hope you don't mind the jokes - relief valve for me, even if inappropriate in some company.

[Ladyjane]

No Stephanie, don''t mind the jokes at all!! In fact, I feel the same way most days. I've never heard of that syndrome, but will definitely check it out. I asked my oncologist how it was possible for me to have five primary cancers, and different types at that. His response: "You have crappy DNA". (This from one of Mass. General's top thoracic oncologists!! OKAY, LOL. I am glad to hear that you seem to be handling things so well. Sometimes I felt like the cure was worse than the disease, but like your friend, I just returned from a 3000 mile trip to meet my grandson for the first time. He's one. I also got to be with my three year old granddaughter and when I got home I realized that they are worth the fight!!!! Every minute with them was a miracle. I intend to have many more miracle times with them. Well, keep on truckin. It's nice to be able to talk with someone who understands and can still keep a sense of humor. Have a good night!!! Jane

[jaminkw]

Jane, love the onc's reply! I almost think we need to make a sense of humor a prereq for being a survivor. Will be watching your progress. You qualify as a Survivor with that capital "S."

Judy in KW

[Ladyjane]

Thanks Judy, You also qualify!!!! What would we do without humor???? I'll be checking on your progress too. Have a good day!!