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What now?


leehee1

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Hi,

I am 57 years old and am new to this forum but not new to lung cancer.

Was diagnosed with carcinoid cancer of right lung in 2003 - had right upper lobectomy and have metastases to the spine. Unfortunately cannot receive the Sandostatin med usually given because I do not have the receptors for the meds. This whole diagnosis is a story in itself.

Immediately after this diagnosis (still feel the rib pain from surgery), I was diagnosed with papillary cancer of thyroid. Had one lobe removed and they cut my nerves so that now I have a permanent tracheostomy (breathing tube in neck). Had a recurrence in 2008 and the other lobe was removed and had radioactive iodine.

They discovered Scleroderma during this time which has affected my lungs among other things -wheezing, sob etc. Take meds etc. On follow up scans (I have wonderful docs) a tumor in my parotid (salivary) gland was found. Biopsy was inconclusive and all opinions agree needs to come out.

Was about to schedule surgery when I had a routine CT scan. A nodule they had been watching in upper left lobe has tripled in size in last year and has all signs of being malignant. I am an ex smoker - stopped with first lung cancer diagnosis.

I am totally blown away as are my docs. What are the odds of getting two kinds of lung cancer? I just hate the waiting part and just want to have a plan of action. Docs say I need a surgical biospy as they cannot get to the tumor with a regular biopsy.

I am already looking further and have read so much - that is how I stay proactive and involved - knowledge is power for me. I am asking myself already can I live a good quality of life without two upper lobes? Are the two tumors connected and if so is this metastases and can I take all these major surgeries?

Just needed to find a place where I can vent. Hope to make lots of friends here and to be a survivor for a long time.

Lee

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Welcome Lee,

Sorry to hear you might be dealing with a double edge sword. Don't know the answer, can I live a good quality of life without two upper lobes--perhaps someone else will come along to shed some light and point you in the right direction. The fact you are pro-active in researching is a plus, your right knowledge is power. The wait game is the hardest and hopefully you will have a game plan soon so you can get on with it. Stay with us and keep us posted.

Good Luck,

Rich

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Hi, Lee, welcome to the group! I enthusiastically second Ellen's suggestion to visit cancergrace.org — it's an exceptionally valuable resource. From what I've read there, I believe that if a period of several years elapses from the time of a lobectomy to the appearance of a tumor in the other lung, the new tumor is far more likely to be a new cancer than a met from the previous cancer. I think the odds of one versus the other change at about the 2- or 3-year point, but whether a second lobectomy is advisable is a more complex question as you obviously know. Instead of a lobectomy, I wonder if the new tumor could be removed via wedge resection using a minimally-invasive VATS procedure?

Best wishes and Aloha,

Ned

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Hi Lee. Welcome to this board. Wow have you been through a lot. But you sure do seem to have the right attitude. I can't help you with your technical question but I wanted to wish you well and look forward to getting to know you better on the board. Please keep us posted on how you are doing.

Sandra

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Lee, I could just "ditto" Sandra's post. I was thinking you have had more than your share and still your attitude sounds great. I agree the waiting is the worst. Hope you get a plan in place soon. Keep us posted.

Judy in Key West

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Lee,

I cannot answer your question about Quality of Life with the procedures you describe.

However, this is the place to be for information, and I believe as you do, that there is power in researching out this disease.

Keeping on top of things is paramount. Your attitude is gift certainly. It can see you through this.

Welocme to a wonderful group of people,

Barbara

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Hi Lee,

Welcome to this site but sorry you qualify as a member.

My dad had scleroderma and lived to 77....he got esophageal cancer.

I think your docs should be able to advise you about whether you're a good candidate for surgery, but I'd do some research or ask a lot of questions. If necessary, oxygen can be very useful for some, though it will create some restrictions.

Having copd and had one lobe removed, I too wonder what would happen if i had a recurrence, but i'll cross that bridge if i come to it.

Best of luck to you, and keep us posted!

Hugs,

Trayce

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Hi Lee-

Welcome!!! Sorry you find the need to be here but am happy you found us!!!

I cannot give you any information on your surgical procedures and I was never a candidate for surgery and am not familiar with the other forms of cancer. But I agree that you might get some good info over on the grace site.

Wishing you tons of luck and PLEASE keep us posted as to how you are doing.

Hugs - Patti B.

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Wow, Lee, what a journey you've been on with many twists and turns. You ask what are the chances...........my guess is pretty slim and that, for sure, can't make you feel any better. Most of us just deal with the luck of the draw - or the 'unluck' as it may be.

Glad you are here for support. You, my new friend, may be supplying the rest of us with info that may help us deal with 'surprises' we encounter along the way. I'm so glad you have a wonderful team of docs you trust. It's great that you continue to research and stay on top of everything. You are doing all you can - keep it up. We'll all be rooting for you and waiting for your updates.

Kasey

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Hi Lee,

You have come to the right place for information and to vent! You have been on an amazing journey. There are many people here who are happy to share their experiences and give you support as you begin this new chapter. So, welcome aboard the ship no one wants to be on, but a ship we are all mighty thankful to have!

Susan

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