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ksflwrpetals

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I was just earlier this week rediagnosed with recurring NSCLC now stage 4. I had the surgery Apr 2011 for BAC, removing the lower rt lung, as it was completely filled and overtaken with the tumor. They said they got it. The testing came back negative. I knew it could reoccur, but somehow thought the chances were slim. As this is in the upper 2 lobes, (2 noduals and a mass) it is classified as Stage 4, inoperable. We are waiting on the ALK mutation testing to come back to determine treatment. I know the basic options of positive vs negative. I am having a hard time understanding if I am looking at months or years. I am scared beyond words and can't get a real grasp on things. There is no one around here to talk to that I know of that has had this particular kind. In the last couple years I have had several friends die from cancer so that has me unbalanced...terrified would be the accurate word. My oncologist said this is so rare (BAC) that it is hard to determine or know how it will act and react. I am information oriented, so have been trying to read and educate myself, which only makes it worse at this point. I am keeping myself busy...getting my affairs in order, cleaning and organzing what I didn't already have in order in my house. Input appreciated :) (someone from ACOR NSCLC recommended this group)

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I can't help you as far as prognosis and type and timing...but over the years I've been surprised at how many folks were given a time by their doctor only to find them blast past it and just keep "hangin around" and feeling good. Have hope...you might just be here to hang with us for a while :).

That said, I'm sure we understand the anxiety and I get how it can be terrifying...but have hope.

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Hi and welcome to LCSC! This is the place to communicate with other survivors and get some input to your questions.

I am not a medical professional, and I don't have any specific answers to your questions,but I really don't think BAC is so very rare-that was not the kind of tumor I had, but several people on this board have had that. I hope they can answer your questions.

As to time, there is no one person that knows that. We have many active stage 4 survivors here. So look around on the board at the various topics and ask questions.

Keep us posted,

Cindy

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Hi ksflwrpetals, it may be a scary thought especially when doctors start giving their "medical opinions". However just reading up on such things (in a larger perspective) will tell you that cancer is on it's way out too. There are millions of survivors that are testament to this. So hang in there, NEVER give up your faith and hope, and keep positive no matter how hard it gets. That's the attitude of a real winner.

Soon you can join the list of survivors and tell us all how you too beat the beast back to where it came from! SMILE :)

Sent from my iPhone using Tapatalk

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Just wanted to welcome you. I don't have BAC - but I agree with Cindy in that it may not be one of the most common types, but isn't extremely rare either. I have squamous cell - and have had it twice. Both times I was told by my doctors that chemo and radiation are not as effective on squamous, and the with the second diagnosis that was my only option - but they warned I shouldn't expect too much. As everyone has pointed out, no one - not even the doctors - know how long any of us have. The truth is ALL of us, even healthy people, only have today - but most of us forget that. I like to think that having a cancer diagnosis just makes it that much easier to appreciate each and every day to the fullest. There are many of us survivors who were told we would not be here . . . but we're still here and not going anywhere soon.

I know how frightening it is to hear you have cancer for the second time - but do not lose hope. As you may remember, this first part before starting treatment is often the scariest time -- it will get better. If you feel your doctor is being too negative -- get a second opinion. In fact, a second opinion is a good idea - there are people here who are alive today because they questioned their doctor and got another opinion.

I hope some BAC survivors come along soon - in the meantime, please keep us posted.

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I am also new to this board. I am waiting for biopsy results to "prove" that my larygeal cancer has metastasized to the lungs. All I can do is improve my diet. I will post more about my diet on a separate thread. However, it is nothing weird or spectacular. Just a well balanced diet with eliminating the majority of junk foods. I hoping that getting into the best shape I can possibly be in, will best prepare me for chemo or whatever else lies ahead. Rick.

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  • 4 weeks later...

HI friend,

I'm sorry you had a recurrence. I've been watching and waiting for an update from you but I haven't seen one.

I just wanted to reach out and let you know that you are not alone. I can connect you with several BAC survivors who can offer you hope and I can connect you with one on one support. It helps not to go thru this alone.

Please know that we are here for you and you can lean on us.

Looking forward to your next post,

Katieb

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  • 5 weeks later...

Thank You! I just now figured out how to find replies to my posts. I had my second blood draw this week, we are comfortable enough with each other that no phone call=nothing to report. I have my second treatment next week and am anixous (not in a bad way) as to what the xray will show, size-wise. I am settling down ☺ and am using my down time to learn and work on things to change and/or do better. (type A personality) Thanks for the input...will post again the outcome of next week ♫

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Katie said she had been looking for an update...today was the day.

We didn't get the news we had hoped for...but that is not a bad thing IMO :) The xray was not a good take so there was nothing but fuzzy to see. IMO if the places had grown substantially, I am holding to my belief that something would have been seen in the upper lobe based on it's location. So...second round of chemo, already feeling worse faster, but have what I need to combat it. Blood work next week, CT and consult the week after. He'll decide then if he recommends more chemo. I told him no chemo right before the end of the month so I can feel like making my trip back to St. Louis for a reunion...he said no problem, go enjoy :!:

I am thankful that an old friend made sure we had some warm-up meals in the freezer for this week ♥

I realize the more experienced here may have imput...so educate me if need be ☼

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