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Cindielou View Drop Down
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Joined: Feb 21 2016
Location: Marietta, GA
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Points: 15 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Cindielou Quote  Post ReplyReply Direct Link To This Post Topic: The next chapter
    Posted: May 19 2016 at 5:48pm
Hi all!
I've been visiting the site for quite a while. You are all so inspiring and encouraging. I was diagnosed July 2015. A 2.6 cm tumor with one affected lymph node. 4 rounds A/C then 4 taxol. Double mastectomy and then 28 rounds of radiation. By God's grace I had a pCr.
But now what? I want to live my life without looking over my shoulder and worrying about recurrence. How? Would appreciate all advice
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KristyLee View Drop Down
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Points: 184 		Post Options Post Options   Thanks (0) Thanks(0)   Quote KristyLee Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2016 at 6:32pm
For me, I make things that bring me joy a priority. I should have stayed home to do laundry today, but instead, I went and had coffee with a friend. I keep my calendar stocked with fun things with friends and family. Think about what makes you happy and do more of it. 

I cut some people out of my life who brought me down. I only have energy for relationships that are uplifting. 

I say no to doing things that I don't want to do. I don't do things out of obligation, unless it's for my husband and kids. I'm selfish about my time. Regardless of how well I seem to people, I'm still healing. I'm gentle to myself and I make my happiness a priority. 

These things help me manage stress and anxiety, and keep me optimistic. 

Wishing you well! 
Dx 09/14 Stage 2 TNBC, Grade 3, 3cm, no nodes. BRCA1+ Neoadjuvant treatment: 4 AC/T, 12 Taxol, 4 Carboplatin. BMX Diep Flap Hyster 3/5/15. Path report PCR, no radiation advised.
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Jacklin View Drop Down
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Points: 559 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2016 at 8:41pm
Hi Cindielou,

Any one of us could be at the end of our earthly life in the twinkling of an eye - it could be a natural death (ex: heart attack), it could be an accident (hit by a busy) or something else. Nobody should ever take life for granted, we need to live life to the fullest, every moment of the day. That's why the 'should haves' get replaced by the more important things in life, like KristyLee said, coffee with a friend. 

Somehow getting a cancer diagnosis causes us to re-evaluate our lives and how we spend out time. I know for me, it makes me sad that I've been so busy doing 'stuff' and not really living life before cancer. Now, the stuff just waits and I spend time with those I love and doing things I like/love doing. I am also learning to be more gentle with myself and not multi-task anymore. Today, while I was walking, I heard a lot of soft tweeting voices in a coniferous tree so I stopped and waited, and waited and waited. Finally I was rewarded by seeing a mother bird bringing food to her young ones in the tree. It was so precious to watch and if I had rushed by, I would have missed that moment. The other night I was blessed to see a full arc rainbow, it brought tears to my eyes as I watched it's beauty, in no rush to go anywhere or do anything other than enjoy the beauty of the moment.

We need to take life for the gift that it is, life every moment to the fullest and be grateful for those we love and love them fully. Cancer gave me the magnifying glass to evaluate my life with. Hopefully we all can live life fully.

So, when we look over our shoulders and worry about recurrence(s), we miss the precious moments of right now. Don't miss those, they'll never come back. Be sure to life each moment, fully. 

I hope and pray this helps you. Please, keep posting here, we're here to support you as we all work to eliminate cancer in our lives.
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Guests View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: May 20 2016 at 10:01am
I think its normal to look over your shoulder with tnbc. Keeping it in perspective is important. I agree with Jacklin and Kristylee.
Also if this worry is interfering with your life. Tell your Dr. Anxiety is common with tnbc patients. Support groups help and there are some new meds and supplements for it. Life is too short to live in fear. Keep poating. The more you talk about it the better.
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Guests View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Guests Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2016 at 2:00am
I keep trying to post on the other forum but the site wont let me. I hope this one does. I did a relay for life today. It poored down rain but I walked my survivor walk for all of us. Hoping that the money raised will find a better more reliable cure for this disease
We just have to keep fighting one day at a time. Im exhausted but feel good to be able to do something.
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Cindielou View Drop Down
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Points: 15 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Cindielou Quote  Post ReplyReply Direct Link To This Post Posted: May 30 2016 at 10:46am
Thanks so much for all of your responses. I know it is time to only look forward and leave the past in the past. I am so thankful for you all. There's a lot of comfort in knowing that all of you totally get it.
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Kellyless View Drop Down
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Joined: Jun 18 2009
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Points: 1154 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2016 at 9:01am
Congrats Cindielou! Welcome to the NED club, we're thrilled to have you. Your stats and treatment are very similar to mine, I finished treatment in September '09. Those first 2 years post treatment are a very weird time. In hindsight I was deep down sure my days were numbered, I think I'm just now accepting that I beat this... I had a long appointment with my surgical oncologist yesterday about this very thing. in 2009 the genetic testing they did was for BRACA only, so I'm going to have it redone and tested for _everything_ all the new mutations they've discovered in the last 7 years etc.Peace of mind is important, it's a hard goal to achieve for survivors of TNBC.And that's my hope for you Cindielou, thatyou find peace in your post cancer life      
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Ssam View Drop Down
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Points: 37 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Ssam Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2016 at 5:04am
Hi ladies, could you tell your views on this please .... I had 2 lumpectomies in Jan 2016 and successful WLE with no lymph nodes involved.  I finished 20 rads 7 weeks ago and have just been discharged by my clinical oncologist.  No chemo.  I don't go for another mammogram until November this year.  Does this mean I'm in remission?  It had never occurred to me until my husband's friend asked me yesterday.  Thank you.
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
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gordon15 View Drop Down
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Points: 788 		Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2016 at 5:24pm
Hi Ssam I had to look up "WLE" I had not heard that.

http://acronyms.thefreedictionary.com/Wide+local+excision

you mean (WLE)=you had "clear margins" after lumpectomies.

I think NED is the same as remission, at that point, doctors wait for symptoms (like my wife currently) and/or they do PET/CT scans , depending on insurance in different countries, and here in the USA different states, may have different criteria for doing a PET/CT scan to identify any cancer that is metabolizing, as a preventive diagnostic tool.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Ssam View Drop Down
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Points: 37 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Ssam Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2016 at 12:28pm
Hi Gordon, thank you for your reply and yes, you got the WLE abbreviation right!  So far, here in the UK, I've not heard the phrase NED but I'm seeing my Breast Care Nurse tomorrow so will ask.  It feels as if they are just waiting now to see whether my TN comes back which is pretty frightening and I do try hard not to dwell on that, but on low days, it can creep up.  I will also ask about CT scans, but I do know that once you've had radiotherapy over here, they want you to wait if possible, before having any further radiation - unless of course, there seems to be a real requirement for it.  Trying not to imagine every lump and bump is a baby tumour!  Best wishes to your wife, how lucky she is to have you researching all this with her.
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
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