hope16 Posted September 7, 2018 Posted September 7, 2018 Hello guys I have been reading a lot of stage one survivors stories. While there are many who went onto live their lives peacefully without a recurrence for over a decade, there are others who struggled with a lot of new nodules and multiple surgeries to get them out and called them new primary. There were only few people whose disease was spread to the other organs. So I am little confused here. I feel more than the recurrence, its the new nodule which people are struggling more with. Which are comparatively easy to deal with but scary. What do you say about it? My observation is solely based on a lot of stories I read online.
Tom Galli Posted September 7, 2018 Posted September 7, 2018 Hope, Let’s start with National Cancer Institute recurrence rare for successfully treated Stage I Lung Cancer NED patients is about 33%. So two thirds of all stage I folks never have a recurrence after a NED treatment. Now your question talks about two different cases, as I understand it. A recurrent nodule of same type of cancer preciously, and what you call a new primary. Normally the words new primary mean a new form of cancer. If that is what you mean, then it is not a recurrence, it is a whole new treatment protocol. I would say both are not favorable experiences. Both require going back into treatment and this is very disappointing because they have a strong reason to believe their cancer problem was solved. Is this answering your question? Stay the course. Tom
hope16 Posted September 7, 2018 Author Posted September 7, 2018 Yup, you understand my point correctly. But my question is that this new primary is also part of that 33% or it is not counted? That means 33%includes only reoccurrence and not new primary.
hope16 Posted September 7, 2018 Author Posted September 7, 2018 Also, from what I gathered that these new nodules that are found during close monitoring are much more common than we know and usually they are the new cancer. I am strictly speaking about first stage.
LexieCat Posted September 7, 2018 Posted September 7, 2018 Nodules come and go, and most are not cancer. Even after cancer treatment there may be nodules. I have several. They are most likely scar tissue from an infection or inflammation. My docs are not particularly concerned about them. Because I get scans every six months, they can see if any have suspicious changes, indicating a recurrence. That way, they can get on top of them fast. But for right now they are just sitting there. And sometimes a "new" one will appear but it could just be something missed on a previous scan. I've learned not to get worked up over them if the docs aren't.
Tom Galli Posted September 7, 2018 Posted September 7, 2018 Hope, I've re-read the NIH paper that has the recurrence statistics. It speaks to recurrence which means a metastasis from a previously identified cancer. I don't think the study or its data considered a "new primary" which could be a new form of cancer, lung or otherwise. Nevertheless, for the person experiencing a recurrent or new primary after no evidence of disease (NED) treatment, the result is the same -- an emotionally crushing experience going back into treatment. As Lexie reports, nodule finds in lung cancer scans are common. So common in fact, that I track mine on a spreadsheet so I can spot the new ones from pre-existing ones. Mine come and go but it is comforting to be able to confirm for my self and not experience a "new nodule" meltdown. Stay the course. Tom
hope16 Posted September 7, 2018 Author Posted September 7, 2018 This makes this disease horrible. Anyway thanks for your input. Because in over hundred stories that I read, people reported to have experienced new cancer in form of new nodule much more than recurrence from the previous cancer. Hence I posted this question.
LexieCat Posted September 7, 2018 Posted September 7, 2018 I think you are thinking about this the wrong way. Lung cancer is almost always first seen as a nodule. That's basically a lump of tissue that could be anything. The vast majority of the time they are not cancer. Think about it this way. Most skin cancers start off as moles, but most of us have moles all over the place, and most of them are not skin cancer (and will never turn into skin cancer). We don't panic every time we find a mole. We keep an eye on them, and if something suspicious happens with them, we have them checked out. The doctors know what to look for with lung nodules. They are usually nothing to worry about. But that's why they keep an eye on the scans. This is similar, the way I see it. I get the sense you are trying to fathom how likely it is your husband will at some point have a recurrence. That's pretty much unknowable. We are human beings and any of us could develop some kind of serious illness or condition at any time. You can either worry yourself sick about the possibility of the worst happening, or enjoy life while getting appropriate healthcare to keep yourself as healthy as you can.
hope16 Posted September 7, 2018 Author Posted September 7, 2018 Yeah.. True. I am trying to get a grip on myself difficult but doable. It's just when I read this stuff, I kept getting it again and again that new primary cancers are also as common as recurrence. Hence I was worried. And it worries me even more that my husband got it at such a young age. Anyways nothing will change even if I worry. Thanks for your kind words. They do matter a lot.
Robert Macaulay Posted September 7, 2018 Posted September 7, 2018 I have new primary cancer after my first cancer in 2002 which was 2A So long ago. lol Bob
hope16 Posted September 7, 2018 Author Posted September 7, 2018 Must have been difficult o. You... Can't imagine the emotional roller coaster you must be going through.... But this is how God planned our lives... My prayers are with you
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