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Old 11-08-2012, 03:51 PM   #1
lasarles
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Join Date: Sep 2012
Posts: 62
What do you say?

Just wondering what some of your answers are when friends and family say "when will they know if they got it all?" or "are you in remission?"
__________________
**********************************
05/2011 Mammogram - Clear
3/12/12 Found Lump Lt Breast (BSE).
3/13/12 44th Birthday, Mammogram, Ultrasound.
3/15/12 Needle Biopsy on Lump and Suspicious Node.
3/20/12 Dreadful "C" Word.
ER90% PR90% Her2+
1 cm, IDC, Stage 1, Grade 2
4/19/12 Portecath, Lumpectomy & Sentinel Node Removal. 0/4 Node Involvement...Yea!!
Margins Clear......Yea!!
5/17/12 Chemo Begins. TCH x 4.
Herceptin Weekly x 4, every 3 wks thereafter for 1 yr. Muga Scans every 3 mos.
8/13/12 Rads x 30
9/24/12 Start Tamoxifen
10/22/12 CT/Whole Body Bone Scan. No Cancer Detected......Yea!
1/31/13 Annual Mammogram and Ultrasound....NED....:)
5/23/13 Final Herceptin Appt
6/25/13 Port Removal
5/2017 Stop Tamoxifen Start Arimadex
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Old 11-08-2012, 04:01 PM   #2
Kellennea
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Location: Mt. Prospect, IL
Posts: 177
Re: What do you say?

Hi!

I always count being "Cancer Free" from the day of my lumpectomy (with clear margins) and node biopsy (no node involvement).

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10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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Old 11-08-2012, 08:43 PM   #3
JillaryJill
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Posts: 271
Re: What do you say?

I have a standard answer. I tell them "so far so good" If they have never had cancer I don't get into too deep. The only people I trust with the details is other survivors...they get it. Others survivors and I talk openly about the treatment we had, personal decisions we made, prognosis, the stage we were at diagnosis, the surgeries and all the mental "stuff" that goes along with the diagnosis.
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 11-08-2012, 09:25 PM   #4
lasarles
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Join Date: Sep 2012
Posts: 62
Re: What do you say?

That's why this support group is so important. I haven't posted much but have read many, many posts since my dx. It is still so surreal to me. My family and friends have all been wonderful and supportive but just like myself, I didn't truly understand until I walked in your shoes.
__________________
**********************************
05/2011 Mammogram - Clear
3/12/12 Found Lump Lt Breast (BSE).
3/13/12 44th Birthday, Mammogram, Ultrasound.
3/15/12 Needle Biopsy on Lump and Suspicious Node.
3/20/12 Dreadful "C" Word.
ER90% PR90% Her2+
1 cm, IDC, Stage 1, Grade 2
4/19/12 Portecath, Lumpectomy & Sentinel Node Removal. 0/4 Node Involvement...Yea!!
Margins Clear......Yea!!
5/17/12 Chemo Begins. TCH x 4.
Herceptin Weekly x 4, every 3 wks thereafter for 1 yr. Muga Scans every 3 mos.
8/13/12 Rads x 30
9/24/12 Start Tamoxifen
10/22/12 CT/Whole Body Bone Scan. No Cancer Detected......Yea!
1/31/13 Annual Mammogram and Ultrasound....NED....:)
5/23/13 Final Herceptin Appt
6/25/13 Port Removal
5/2017 Stop Tamoxifen Start Arimadex
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Old 11-09-2012, 01:56 AM   #5
sarah
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Posts: 1,648
Re: What do you say?

"so far so good" sounds like a good suggestion - also "I certainly hope so!"
The problem is when you're first diagnosed, you're very sensitive about talking about it. I remember hating all the questions my sweet and worried friends asked me such as what was I going to do, etc... finally I wrote them an email and said something like, "I know you're worried and want to help but please don't ask me about my cancer. By all means call me up to talk about movies or other things. When I've decided what I'll do, I'll let you know." Looking back now, I remember how scared and confused I was and talking about it just made me more anxious.
Only survivors will understand the emotional turmoil. Friends are scared also, for you, for the possibility that they may "get" it. Also friends, who aren't survivors really don't know what to say and don't really want to hear depressing news, some shy away from people who are seriously ill or talk too much about their illness.
You have to decide what you're comfortable with and explain that to your friends. I did it the first time around a little harshly perhaps but I couldn't have taken another long conversion about it. Today (12 years later) I can discuss just about anything with anybody.
Remember your friends care, are scared and confused. Even our spouses sometimes are at a loss of what to say.
There was a post about cancer etiquette on the site that I remember was quite good, maybe search for it and take a look, it may have some good retorts.
Your cancer was caught very early so you'll be fine. A friend of mine always says "you can't die of cancer in the breast" meaning it's only when it gets out, it's a little trickier but still very treatable.
Chemo's tough but remember it's killing those bastards. Rest, take care of yourself and spoil yourself. watch funny movies and remember a year from now it will all be in the past and life will be back to normal.
Cancer's a terrible shock but breast cancer is one of the best known and well treated cancers.
Also remember if you have any concerns about your treatment, etc. get another opinion.
This site is fantastic and extremely helpful. Ask the nurses about the potential side effects and what you can do should you have any - there are creams for the skin and nails. By the way, if you lose your hair, it comes back thicker and softer. Don't take anti-oxidants (vitamins) during chemo and radiation, although I believe a multi is ok and many on the site take co-enzyme Q10 to protect the heart during Herceptin. I took it and still do. Drink lots of water.
take care
hugs and love
sarah
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Old 11-09-2012, 08:15 AM   #6
snolan
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Location: El Paso ,Tx
Posts: 436
Re: What do you say?

I tell people I am in remission until the day I die from something else they can say I was cured. That what my Dr told me. But like it was stated above people really don't get it unless they have been through it.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 11-09-2012, 09:30 PM   #7
evergreen
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Location: Ontario, Canada
Posts: 62
Re: What do you say?

I say I feel good, am doing all I can to help my cause i.e., diet and exercise, but that there are no guarantees because cancer is a complex disease. I also say that one positive about cancer is gaining a greater appreciation of the value and pleasures of life....
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Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 11-11-2012, 11:47 AM   #8
chekmark
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Location: Doylestown, ohio
Posts: 334
Re: What do you say?

I don't really like the word remission. To me that sounds like we are just waiting for it to come back. I say that's what they tell me and I hope to keep it that way. One can hope, right?
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 11-11-2012, 08:09 PM   #9
candlegranny
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Posts: 150
Re: What do you say?

i asked my doctor what was right to say... he said i am not 'in remission' i am cancer free. so when anyone asks i just say i am cancer free.
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Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
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