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Topic: Happy Anniversary...or not?

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  • Posted on: Feb 11, 2009 01:58 pm
San Diego, CA
Joined: Oct 2008
Posts: 419
Celtic_Spirit wrote:

It was around this date last year that I learned I had breast cancer (I can't remember the exact date; I think my mind blew a few circuits that day!). I asked my oncologist once what to consider my "anniversary": the date of my diagnosis, surgery, end of treatment, etc.? She felt late February/early March, which is between my diagnosis and the beginning of treatment. That's nice...I would be one year out now. But before I built myself a chateau in Fool's Paradise, I did some research. The folks at Johns Hopkins feel that, for stage III, your anniversary countdown begins at the end of active treatment. I've seen a whole spectrum of opinions. What have you been told?


Dx 2/8/2008, IDC, , Stage IIIa, / nodes, ER+/PR+, HER2-

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lexislove
Joined: Sep 2007
Posts: 2,304
Feb 11, 2009 02:07 pm lexislove wrote:

I'm in Canada, but on the Canadian Cancer Society website it stated that your a survivor from  the day you were diagnosed, so I guess you would be a year now!. I don't know why a Stage 3 diagnosis anniversary date would be any different than other stages.

I've been counting since my diagnosis Sep 14 2007.Almost 2 years...but hey,Wink who's counting..


Dx 9/14/2007, IDC, 6cm+, Stage IIb, Grade 3, 0/6 nodes, ER+/PR+, HER2+
everyminute…
Joined: Aug 2008
Posts: 1,413
Feb 11, 2009 02:09 pm everyminute wrote:

Your signature says you were diagnosed on 2/8 :-)

I didnt ask - I guess if I were to celebrate anything it would be the end of treatment but my little chatueau comes with a calendar with only todays date on it :/) I get too nervous when I think about anything more than today!

SherriG
America
Joined: Jan 2005
Posts: 5,292
Feb 11, 2009 02:09 pm SherriG wrote:

My onc uses the day of diagnosis since that is when it is first known you have bc.  Makes sense to me.  I never knew there were different variables used between the stages to determine your anniversary.  I believe those "wonderful" stats that we see on survival and disease free survival must use the date of dx in order for the stats to be accurate.  But, I could be wrong!

Diagnosed 11/05/04 Stage 3 ILC "Lump is a four letter word!" Sherri
Celtic_Spir…
San Diego, CA
Joined: Oct 2008
Posts: 419
Feb 11, 2009 02:25 pm Celtic_Spirit wrote:

See, I told you my wiring got fried! LOL! Actually, I think 2/08 was the date of my biopsy. The "fatal phone call" was a day or two later...can't remember. But I'm not going to split hairs...they're still too short!


Dx 2/8/2008, IDC, , Stage IIIa, / nodes, ER+/PR+, HER2-
everyminute…
Joined: Aug 2008
Posts: 1,413
Feb 11, 2009 02:27 pm everyminute wrote:

Going without the wig yet?

I was planning on it this week but I lost my nerve again - got about 1/2 inch of nice dark hair but not enough to look like I planned this...gonna give it a few more weeks....sigh.

robyn33
Minneapolis, MN
Joined: May 2008
Posts: 94
Feb 11, 2009 02:45 pm robyn33 wrote:

Hi all,

Yah, everyminute.  I'm about in the same boat you are in.  My hair is about the same length as yours.  I'm frustrated and have about had it with working so hard to look somewhat "normal."  The day I feel comfortable walking out without something on my head will be a monumental day!  Smile


Dx 5/13/2008, IDC, 2cm, Stage IIIa, Grade 2, 5/15 nodes, ER+/PR-, HER2+
KerryMac
North York, ON
Joined: Jan 2009
Posts: 2,361
Feb 11, 2009 05:12 pm KerryMac wrote:

Well, i am soooo bald, I can envy you guys at least having something to keep you warm up there! And Celtic Spirit - getting a whole year between you and your diagnosis is cause enough for celebration! Whatever those folks at John Hopkins might say...


Dx 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
KerryMac
North York, ON
Joined: Jan 2009
Posts: 2,361
Feb 11, 2009 05:32 pm KerryMac wrote:

So, I just need to ask - how long has it taken you guys hair to grow since finishing Chemo? An half inch in 2 months??


Dx 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
lexislove
Joined: Sep 2007
Posts: 2,304
Feb 11, 2009 05:43 pm lexislove wrote:

Kerry Mac,

I finished chemo a year ago TODAY. I have about 4 inches. It took a good 6 weeks AFTER finishing chemo to start to see anything starting to grow. Although , I finished Herceptin in Nov 2008, and have noticed that it seems to be picking up speed. My hair never really grew fast anyways, thats why I got the extensions.


Dx 9/14/2007, IDC, 6cm+, Stage IIb, Grade 3, 0/6 nodes, ER+/PR+, HER2+
everyminute…
Joined: Aug 2008
Posts: 1,413
Feb 11, 2009 05:45 pm everyminute wrote:

Would love to see a pic with the extensions, lexis!

lexislove
Joined: Sep 2007
Posts: 2,304
Feb 11, 2009 05:51 pm lexislove wrote: I actually go on Friday to get them tightened maybe I'll get the woman to take a couple "without extension" and "with extension" pics. I just purchased 20 inch ones for the summer, my extensions now are about 16 inches. Tongue out

Dx 9/14/2007, IDC, 6cm+, Stage IIb, Grade 3, 0/6 nodes, ER+/PR+, HER2+
Celtic_Spir…
San Diego, CA
Joined: Oct 2008
Posts: 419
Feb 11, 2009 05:56 pm Celtic_Spirit wrote:

It's been 5 months now, and I've got a decent Judi Dench thing going on. It came in a rather pretty salt-and-pepper, but I don't want to look 10 years older than I am, so I'm waiting to go wigless until (a) I can have it dyed brown and (b) it's longer, say, Ellen Degeneres length. I may go wigless when my boyfriend and I bicycle in the desert. No one would see me there except for the coyotes and the Border Patrol!


Dx 2/8/2008, IDC, , Stage IIIa, / nodes, ER+/PR+, HER2-
everyminute…
Joined: Aug 2008
Posts: 1,413
Feb 11, 2009 07:58 pm, edited Feb 12, 2009 05:54 AM by everyminute everyminute wrote:

when I get to the point where it could look like I even possibly did this on purpose then the wig goes. 

Here is an alyssa milano style that I am hoping to have in a month or so...

bummer....It didnt like my pic...ok just google alyssa milano short haircut

Brenda_R
IL
Joined: Dec 2006
Posts: 604
Feb 11, 2009 09:11 pm, edited Feb 11, 2009 09:12 PM by Brenda_R Brenda_R wrote:

Lillie Shockney from Johns Hopkins told me it goes from the date of your last active treatment. Now I just say I'm 2 years out from dx and 7 months out from treatment.

I think it matters when you are counting how far out you are in your 5 year recurrance free survival.  I was thinking I had almost passed the most dangerous 3 year point for her2 positives. Now I know I haven't passed the 1 year point yet. Frown

------------ Don't let the fear of cancer and dying, steal the rest of your life ---------
Dx 12/12/2006, IDC, 3.7cm, Stage IIIb, Grade 3, 1/17 nodes, ER-/PR-, HER2+
lexislove
Joined: Sep 2007
Posts: 2,304
Feb 11, 2009 09:14 pm lexislove wrote:

* Dang!*


Dx 9/14/2007, IDC, 6cm+, Stage IIb, Grade 3, 0/6 nodes, ER+/PR+, HER2+
Brenda_R
IL
Joined: Dec 2006
Posts: 604
Feb 11, 2009 09:29 pm Brenda_R wrote:

That was kind of my re-action too. 

------------ Don't let the fear of cancer and dying, steal the rest of your life ---------
Dx 12/12/2006, IDC, 3cm, Stage IIIb, Grade 3, 1/17 nodes, ER-/PR-, HER2+
PrincessKau…
Berkeley, CA
Joined: Feb 2009
Posts: 287
Feb 11, 2009 11:55 pm PrincessKauai59 wrote:

I had no idea about this difference in start time for the clock and am stage IIIa - - I'll ask my Oncologist next week.  I was diagnosed late last July, mastectomy 8/27/08, chemo started 10/1/08 and will finish week of 3/16/09, a month off, then radiation!  This is a marathon!

Celtic_Spir…
San Diego, CA
Joined: Oct 2008
Posts: 419
Feb 12, 2009 12:59 am Celtic_Spirit wrote: Yeah, I'm either one year out or 10 weeks out. Or nearly 11 months out, if I count back to surgery. I'm confused. Frown

Dx 2/8/2008, IDC, , Stage IIIa, / nodes, ER+/PR+, HER2-
karen1956
CO
Joined: Feb 2006
Posts: 2,004
Feb 12, 2009 01:45 am karen1956 wrote:

Celtic,

I use several dates...date of Dx, date of mastm dates of chemo, rads start and finish, ooph..  but mostly I use date of Dx as that is when this nightmare, umm, I mean journey began.  In regards to AI's  for me 5 years is  from when I started them. When I was first Dx, DH and I went to the local Komen affiliate and they told me that you are a survivor from the moment you hear the words, you have BC.  BTW, I have not asked my onc what he uses for dates, but when I saw him a couple weeks ago, just shy of 3 years from Dx, he still has me on a 3 month schedule.  I thought from the info he gave me at the start of all this, after 3 years, visits go to every  6 months.  I guess I will find out next visit if it moves to 6 months or stays 3 months. 

Karen in Denver, ILC, stage IIIa, ER/PR+, HER2-,
KerryMac
North York, ON
Joined: Jan 2009
Posts: 2,361
Feb 12, 2009 05:35 am, edited Feb 12, 2009 05:43 AM by KerryMac KerryMac wrote:

So I have been searching the Internet for this (I'm up early and bored....), and the opinion is far and wide....someone is even calling herself a Survivor without having had cancer as her Mother died from it....

But, it does seem you start counting after active treatment has finished, but I don't think that includes Herceptin, as it is classed as a maintenance drug. I'll ask my Onc next time too - can't believe I am still counting up to day 0!!

I love the short hair cuts - actually, yesterday a woman came to my door, it was so bizarre, she had the shortest hair ever. For a minute I really thought she was from The Cancer Society or something, as her hair was soooo short. Turns out she was just a Realtor wanting us to sell our house! But it looked great and was obviously intentional. Loads of people actually do get haircuts like that.  


Dx 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
everyminute…
Joined: Aug 2008
Posts: 1,413
Feb 12, 2009 05:54 am everyminute wrote:

is active treatment chemo or radiation too - I think it is the end of chemo for some reason.

KerryMac
North York, ON
Joined: Jan 2009
Posts: 2,361
Feb 12, 2009 06:41 am KerryMac wrote:

I don't know - where I was reading said Active Treatment was Surgery and/or Chemo and/or Radiation (Slash, Poison and Burn!).....I would probably say Chemo myself, just 'cos that makes it sooner!!


Dx 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
kim40
Halifax, NS
Joined: Dec 2008
Posts: 639
Feb 12, 2009 08:29 am kim40 wrote: I'm starting chemo in March and I have finally come to accept the fact that losing my hair is going to happen. I was devestated about the thought - not that I like my straight, flimsy hair to begin with, but I felt I was going to lose a part of who I am.  Does that make sense??  I am now planning on going out with the girls in a couple of weeks for "Wig Shopping" before chemo (I'm in Canada and it gets pretty cold where I'm at Smile!)  We are planning on making it a day of fun instead of being depressed about it.  We are going shopping, going out for dinner and having a few drinks later.  I'm actually looking forward to it now!

Dx 1/6/2009, IDC, 5cm, Stage , Grade 3, 14/19 nodes
everyminute…
Joined: Aug 2008
Posts: 1,413
Feb 12, 2009 08:33 am everyminute wrote:

My girlfriend and both my daughters came wig shopping with me  - I was trying to make it easier on my kids but it also made it easier on me!

Have fun with it!

ps - my avatar pic is me in my wig! Much better than my real hair every was :-)

kim40
Halifax, NS
Joined: Dec 2008
Posts: 639
Feb 12, 2009 08:44 am kim40 wrote:

Wow - it looks great!


Dx 1/6/2009, IDC, 5cm, Stage , Grade 3, 14/19 nodes
everyminute…
Joined: Aug 2008
Posts: 1,413
Feb 12, 2009 08:52 am everyminute wrote:

I went with a synthetic wig but it is hand tied and has a monofiliment cap - looks very natural.  I am tired of it though.

KerryMac
North York, ON
Joined: Jan 2009
Posts: 2,361
Feb 12, 2009 08:55 am KerryMac wrote:

I'm just done my second treatment and am now really quite hairless. It isn't so bad - well, it isn't great, but its not the end of the world!

I'm in Canada too (Toronto) so I figure everyone else is wearing a hat outside anyway and it is less noticable. I haven't even got a wig yet....am making do with scarves and hats.  Don't forget to buy a Sleep Cap, my head gets chilly at night. There is a Canadian Web Site we used, but I also got stuff from the US for about the same price.

http://www.hairbeautycanada.com/ 

My Husband buzzed me when it started falling out. We thought our kids would be less shocked if they helped with the cutting, but they actually got bored half way through, and aren't fussed at all when I walk around all bald. 

What Chemo are you on? I am doing FEC100-T. It is OK, am a week out from #2 and starting to feel a bit human again.


Dx 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
kim40
Halifax, NS
Joined: Dec 2008
Posts: 639
Feb 12, 2009 09:02 am kim40 wrote:

I'm not sure as to what chemo I will be on yet.  I don't meet with the docs until the 23rd of this month.  I just want to get this started and get it over with!  This waiting is driving me crazy!  I haven't told my son yet that I will need chemo (he just turned 13).  I'm waiting to meet with the doc first so I can know what to expect and then tell him before it starts. 

I'm in Halifax.  I've heard that the Cancer Center here is great - I'm keeping my fingers crossed.

Thanks for the website - I will check it out!


Dx 1/6/2009, IDC, 5cm, Stage , Grade 3, 14/19 nodes
KerryMac
North York, ON
Joined: Jan 2009
Posts: 2,361
Feb 12, 2009 10:37 am KerryMac wrote:

Good luck with it, hope everything goes well for you!

You are right, the waiting is really the worst part. I was really lucky in that my Onc started me on Chemo three days after our first visit! So it was very fast, and I was relieved to get it going.

My kids are a lot younger than your son (3 and 5), and don't really understand the whole concept of "cancer" but it dosen't seem to be affecting them really at all. They play more "Mummy is going to the Doctors" but have adapted so well. They know I need to have medicine, and that I don't feel well after, but don't seem fazed by it. Hope it's the same with your son.


Dx 11/2008, IDC, 6cm+, Stage IIIa, Grade 3, 6/11 nodes, ER+/PR+, HER2-
kim40
Halifax, NS
Joined: Dec 2008
Posts: 639
Feb 12, 2009 10:48 am kim40 wrote:

Three days after your first visit!  Wow - that is fast!  I'm not quite sure what to expect but I guess now that you told me that, I should at least expect it.  Time to replan my wig shopping trip!  I don't know much about chemo, as this is all new to me also.  How often do you go?  Once a week??  How long do you stay there for?


Dx 1/6/2009, IDC, 5cm, Stage , Grade 3, 14/19 nodes

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