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Calculate Remission Years?

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archanapc View Drop Down
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    Posted: Aug 07 2020 at 10:38pm
Hi there,

I have a question regarding how to calculate remission years? Is it from the date of your diagnosis or is it calculated from the last date of your treatment?

I was diagnosed with Stage IIA TNBC in August 2018, had my lumpectomy in September 2018, finished 16 rounds of ACT in March 2019 and 20 rounds of radiation in May 2019. My first NED mammogram was in March 2019 and since then I have had two NED mammograms till now. So technically I am in remission but how do I calculate the time in remission?

Thanks Smile
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Plume View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2020 at 9:36am
Hi there, I think that all of us have wondered about your question!  I certainly have....

I read somewhere, possibly on here, that you count it from the date of your diagnosis.  On that basis, I have recently passed my own 3rd anniversary.

Hope that is correct.  Otherwise, could somebody please come and give us the definitive answer?
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Marymom View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2020 at 9:03pm
I was told day of diagnosis...so, I am 2.5 years.  I wonder about it too!  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2020 at 10:29am
Marymom, do you have a little ceremony to "celebrate" your cancer birthdays?  So maybe a cake with 3 candles on your 3rd anniversary?

I am surprisingly superstitious in that I refuse to "mark" the anniversaries other than thinking about it privately.  Daren't be too obvious about it, in case the gods get jealous?LOL

Also I like to think the cancer and its aftermath is anything other than a "normal" everyday occurence so no need to make a song and dance about it, right?

Would like to know how others think or react!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2020 at 12:17pm
I remember this discussion coming up over the years.  If you use from date of diagnosis, then everyone has the same starting point.  Some have neoadjuvant treatment and others adjuvant making counting from surgery date or end of chemo giving different time frames. 

Personally, I recognize the dates when diagnosed and also the dates I ended treatment.  When someone asks, I always say the number of years since treatment ended.  It gives the shorter period of time, but always superstitious saying it was 5 years, but really only 4 years since treatment ended. 

Plume, I'm with you about being a little superstitious.  I'm 9 years in remission since my recurrence and 11 years since my first diagnosis.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2020 at 5:30pm
Hi all,

I believe it is the day of diagnosis. 

What is tricky in this whole, difficult scenario, is that you never know really know how long you have had cancer when you are diagnosed. My daughter was told that it might have taken 2-5 years before her cancer had grown to the size of an eraser on a lead pencil.
The cancer doesn't come with a sign on it, e.g. "I was born March 3, 20??"

So much we don't know, isn't there? But, I am encouraged that there are so many wonderful researchers and clinicians who are trying to help the TNBC community.  

with my love to all here,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (1) Thanks(1)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2020 at 8:17am
I am curious as well, but at the same time wonder how much it matters.  There is no guarantee that if we pass a certain time marker we are in the clear, but perhaps we can relax a little based on current science. I donít mean that to come off as negative-just that no one knows what the future holds and we really do need to be grateful for the day we have been given.


66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2020 at 12:01pm
"grateful for the day we have been given"......yes, I'd agree with that totally.

But, as they say, a drowning person would grasp at a strawSmile 

Speaking for myself, I keep count because it's something to hang on to.  The further I am from the episode, the better.

I took great comfort when I read one of Donna's post that says that with TN, once the cancer has responded to treatment, it is less likely to come back after 5 years NED; I mean less likely even than for "ordinary" breast cancer. 

So that is something of a comfort blanket to have, on those days when fearful thoughts could not be easily driven away. 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2020 at 12:31pm
Dear all,

My daughter was diagnosed with TNBC in August 2004. This month marks year 16 and she is NED. She continues to do surveillance on a yearly basis now rather than every six months.

Plume you wrote "the further I am from the episode, the better." I agree entirely but I am not sure that she or I will ever be entirely free from some level of worry. Personally, I am infinitely more relaxed than I was in the first five years and I know my daughter is as well.

We had a long conversation about Covid recently and discussed that there was a slight chance her immune system was compromised and that ACT may have affected her heart and agreed that it was probably best for her to be "safe" as best she can. Is she meaningfully at risk now? Probably not, but we feel it may be best for her to be safe rather than sorry.

That is not my advice re: Covid for all here but just a conversation I have had with her.

Everyone handles TNBC in different ways. I have helped women who stopped doing surveillance and had a recurrence and many others who stopped and have remained NED.
I personally feel it is best to follow your oncologist's recommendation about surveillance.

I am at personal risk based on my BRCA mutation and family history for prostate cancer
and also cancer of the pancreas. I am 76 and my last colonoscopy was 7 years ago so I am overdue. Just scheduled it for October. I am more up-due-date on my surveillance for prostate cancer. I don't think there is any perfect plan with any of this but I have been told my oncologists I respect, that in general it is better to find cancer in an earlier Stage than a later one.

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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