Fear of metastases

dinodane · February 2014

Hello ladies,

Thank you for welcoming me in this community.

I have been diagnosed just 2 months ago (IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-), I am currently recovering from left mastectomy and started yesterday my tamox. I had my sentinel node removed and biopsed and it came clear. That and the fact that my grade is 1 "saved" me from chemo.

I know that each case is a case... but is there any ladies with similar dx and treatment that had distant metastasis discovered later on?

Thank you in advance.

Pattysmiles · February 2014

dinodane

I am also a stage 1, but had chemo due to the type of cancer and there were tumor cells in one of my nodes...according to what onc said not enough cells to make the node count as positive though (well, if you ask me,none is too many)

My question is this, do you really want to hear that people might have had metastasis later on? Please, go enjoy your life, as best as you can. Naturally you will be diligent in your healthcare, as we all need to be.

BTW, you have not posted your diagnosis (type of cancer, and ER/PR/HER status). If you are going to pursue looking for any type of a comparison you definitely would want to look at that. I am not contradicting what I said previously, go enjoy, but if you continue to seek "answers" than be informed.

Wishing you the best.

Pat

jenjenl · February 2014

there are many who have had it return and many that don't. there is no real way to tell. i know the place you are at and in a few more months you will think of it less and really there is not a lot you can do - obviously eating healthy and exercise will help.

dinodane · February 2014

Hello Pattysmiles,

Thank you for your answer. For some reason my dx is not appearing on my signature. My type is IDC, 1.2 cm, grade 1, ER/PR 100% +, HER2 -, 0/1 nodes. I am 42.

I understand your point. It may sound silly to you but to me it's an important question. I am informed. As any of you ladies living with the BC lottery certainly are.

Thank you also, Jen.

Holeinone · February 2014

dinodane,

There is no crystal ball in this horrific disease, but you have excellent prognosis with your diagnosis.

There is a web site, called cancer math, google it. You can put in your specific info and it will tell you your odds.

Srh242 · February 2014

Dinodane: did you had an oncotype test, this can help you with recurrance stats.

Srh242 · February 2014

Also there is a thread called stage 1 and premenopausal or something like that , you can connect with others with similar stats and it does help a lot.

dinodane · February 2014

Hello holeinone and Srh242,

Before finding this discussion board, I already knew cancer math and many, many others sites and studies and papers and statistics and all.

Regarding oncotype, that is not part of the standard screening here, I'll ask my onc about it.

Thank you.

ziggypop · February 2014

dinodane - If you really want to find someone who has a diagnosis like yours whose disease has metasticized, you could go to the stage 4 only boards & look at the initial diagnosis of the women there - I don't recall anybody with your diagnosis who have progressed & it's unlikely that you will find someone as the odds are exceptionally low (unless for example someone can not take and AI or SERM & even then the odds are really low)for progression. But - there are, of course, some (I think it's about 2%) of women who do progress with your diagnosis - so maybe you could find someone.

Pattysmiles · February 2014

dinodane,

Not a silly question at all. I wasn't trying to diminish it.

I'm a "knowledge is power type of person". Unfortunately, after reading about mets and recurrences I wish I had buried my head in the sand!

I also have a lung nodule being monitored, picked up on a CT of my abdomen-prior to a surgery- (who would think that could happen!). So I am no longer living my life "free and clear", I now worry and obsess. No one is using the word cancer, yet. But I've read the reports and googled the terms. I also read where many lung nodules go away...so one day at a time.

Now I joined one of the ILC threads and see the "nightmares" mentioned there about ILC and I again struggle mentally to realize that I am not free and clear and then when I run into people who say "all done" "you look great" or other encouraging words I inwardly cringe. That is what I was speaking to about finding out more. In a huge way I wish I didn't, but such is life, I now will double adjust to get things done and in order for my kids and enjoy each day, etc.

Wishing you the best.

Pat

bluepearl · February 2014

Both stage 1, grade 1, ER/PR+ Her2-, clear nodes (or with micrometastisis) are very good prognostic factors. Run with them! Stage 1a is as good as it gets for invasive breast cancer and ILC tends towards being a slow grower as well. Oncotype is important, but on PubMed, those who don't get it can still expect good results if you are ER/PR+ and Her2-. PR- is a poorer prognostic factor even with ER+ but never so much as triple negative! I worried about getting a second breast cancer and I got it. Worrying didn't make one damned difference. So now, I try to be as positive about things as possible...many women, if not most women with breast cancer, die of something else.....like heart disease....I walk on a highway which increases my chances of getting hit by a Mac truck, but well, life is about many risks. We are ALL terminal!!! Let's make today a good day!

Lauriesh · February 2014

Are there stage 1 women with negative nodes who progress? Yes, there are. As ziggy said, the recurrence rate is about 2 %, so for every 100 women who are stage 1, 2 will develop mets.

Fear of metastases

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