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Worried about reccurence

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Kellyless View Drop Down
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    Posted: Jun 28 2018 at 2:44pm
I had a original TNBC diagnosed in Jan 2009, Lumpectomy, chemo, radiation. In May of 2016 I knew it was back. I thought I could feel something but mammo and ultrasound found nothing. I was still sure it was back. Luckily my surgeon believes in the gut instinct of survivors and ordered an MRI with contrast, even tho she thought it was necrosis. My insurance denied the MRI, but I had it anyway, and there it was, two spots lit right up, biopsy confirmed it was the same as last time. I did the same chemo as you this time Taxol X12 weekly, 4 Carboplatin every 3 weeks. Mastectomy pathology showed I got a complete response, the cancer was all gone. My friend Blair, @cheeks here on the forum, did her last chemo for her recurrence after 9 years on Tuesday! We were both told recurrence like this is very very rare. We're told that a completely new cancer after a long period is statistically more survivorable than a recurrence of the same cancer that never fully went away - for what that's worth. So far so good with me cancer-wise.
I think the moral of our stories is to trust your gut!! In hindsight your doctor should have ordered a cancer detecting scan or done a biopsy. Our disease is too aggressive for a "wait and see" attitude! So very glad you're thru the worst of the treatment and doing well. I found radiation to be WAY less unpleasant than chemo, just very tiring. Are you skipping reconstruction?   Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Calinative65 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Calinative65 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 28 2018 at 1:12am
Hi friends!! Was diagnosed with stage 1 tnbc in 2008. Had double mastectomy, 4 tound of AC AND 4?treatments of taxotere. After 10 years, all great. In June 2017, felt small kump under skin near mastectomy scar. Oncologist, , breast surgeon (fif ultrasound) and all thought fat necrosis from reconstruction. 6 months later nodule still there. Breast surgeon removed only because I was hysterical, dr did biopsy, thought nothing. Called next day and surprisingly said was TNBC. Had margin removal, scans at Dana Farber and was considered new tumor. Have completed 4x ; C and taxol and 6 weeks Radiation.
Trying to put all on perspective. Has anyone experienced thiis? Is there hope. I’m devastated Best to all of you!!
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2018 at 1:30pm
I was born in Beaumont and spent my summers with my grandmother in that area. It is full of factories and refineries, as we'd drive around there's waves of foul smells pouring from these places was awful! The worst was the DuPont plant I've always wondered if that has something to do with it. I have no female relatives, my grandmother's died in 1928 and 1940 of "female problems" (thats all the info you get when you only have male witnesses, lol), I have 20 male cousins!
Taxol and Carb got me to a complete response, so not a bad option. Most people seem to tolerate it quite well. I was not one of them but I got thru it. I'm so glad you have a second opinion! In the end go with your gut. As a survivor you know your body, you'll know what's right, trust that.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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cheeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2018 at 12:21pm
Kellyless,
I also wanted to mention. I am the oldest of 5, 3 sisters and 1 brother. I have 6 female first cousins and I am the only one who has had breast cancer. One did have a melanoma when she was 18 but has been fine since then. My mother had late stage 3 ovarian cancer 2 years after my initial diagnosis. She's doing fine and they have found nothing genetic for her either. I have heard my great grandmother on my mom's dad side had breast cancer but have no information other than that.
For genealogy genetic testing on 23&me and Family Tree DNA i do show a small percentage of Ashkenazi Jewish, Native American, and Sun Saharan African. Mom's dad's family were from Belize, the Cayman Islands and Roatan. We don't know about mom's mom, she was adopted but never had any cancers herself. I
I guess that about sums up what background i know.

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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cheeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2018 at 10:38am
Hi Kellyless,

I had typed a long response and poof! I will try and remember what all i said.
My thoughts were the same about chemo first this time around and told my oncologist that's what I thought I would like to do. She said she wanted the mastectomy done first for so she could study the whole thing. She is planning on giving me Taxol and Carbo if nodes are positive at removal. Sentinel node will be removed and tested while I'm in surgery. If negative she plans on Taxatere (sp?) and Cytoxin again.
Fortunately I have a first cousin who is a radiologist at Mayo Clinic in Jacksonville, FL. She and her team are going to review everything as my 2nd opinion. I see Dr. Ingrid Mayer at Vanderbilt. My cousin said everyone she has talked to says Vanderbilt is an exec place.
The only thing I know genetically is from testing i did with 23&me for genealogy purposes. I tested positive as a carrier for Pendred Syndrome, an autosomal recessive trait. If you have the Syndrome it means deafness and thyroid issues. Some patients get thyroid cancer. Carriers aren't supposed to have any I'll effects but who know for certain. My onc. Is going to study it some more.
Environmentally, I was born at Fort Hood, TX in the 50's, lived in Oklahoma in the early 80's and was exposed to radioactive drilling fluids (mud) on a rig my husband worked. Also, had water that had been treated with the defoilient, 2-4d.
One day we might know the why to this unusual set of circumstances that would be normally be associated with BRCA mutation.
I'm glad you're no longer the line unicorn :) although I certainly wish neither of us were experiencing this particular journey again.
Please keep in touch and I'll let you know how everything is going, especially since you're ahead of me on this one.

Take good care
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2018 at 12:08am
I am sorry Blair! I'm not the lone unicorn recurrence around here anymore, and I really wish I was. And we were diagnosed at the same time the first time! They feel sure they'll find something in my genome as well, but so far nothing.
Are you doing surgery before chemo? Since doing A.C. again is not an option, and there are no studies done for our situation, talk to your oncologist about doing chemo first so you can have a way to know if whatever chemo you do is working this time. The one thing they do know is that if you can destroy all of the living cancer before surgery your odds of recurrence and long term survival is higher. Do you have a second opinion lined up yet?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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cheeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2018 at 10:56pm
Hello Kellyless and Callitive65,
I hope you are both doing well. I've contained to read posts from the forum but haven't posted very often in a few years but here I am again too. I was diagnosed the first time in 2009. You can see by my signature the details. I have been sailing along fine and feeling less stressed and worried as the years have gone by. My oncologist at Vanderbilt had moved me into her nurse a few years ago to continue with what had become yearly appointments. February 8th was my yearly checkup for bloodwork, mammogram of my remaining right breast and a physical exam. I got the bloodwork, the mammogram and was waiting for the nurse to come into the room to see me. I'm walked the radiologist saying she needed me back down the hall for more views of a particular area. My eyes must have been huge i was so shocked! The next day was a biopsy. My husband and I went home to North Carolina and waited for the phone call. A new cancer, in the right remaining breast, micro calcifications.
Triple Negative again after 9 years. I am back in Nashville this week and have had an MRI, met with my oncologist and surgeon. The MRI is showing no other areas in the breast, chest, nodes or liver. We will know for sure after surgery which should be week after next. I had more genetic testing done about 6 months ago and I am still not showing positive for any mutations. My oncologist felt sure I would be positive for something when going back over my records. This time the rumor is smaller and a grade 2 rather than 3. I
It's so nice to read that I'm not the only one having a new TN after so many years.
Steve told me last time to enjoy the beauty of each day and I thank him for that because that's what I'm doing, staying in the moment this time and not living in fear. My name is Blair and it's nice to meet you.


Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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They all are sub-centimetric. I have asthma and had many infections usually got cold and cough from dust.Allergic to seasonal changes.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2018 at 7:52am
Do you know how big the nodules were?  They definitely could be from an infection.  Have you been sick lately?  Following up in a few months is the best way to know if there are any changes.
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 (0) Thanks(0)   Quote svinayak Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2018 at 4:00am
Hi.. everyone i am new to this forum.I am diagnosed with stage 3,2years ago.
I had a dry cough from past 2-3 months.So my onco ordered a pet/ct.
Today i got my report and there are multiple ground glass lung nodules in my lungs.They also showed mild fdg uptake on nodules.My onco said right now they are so small and looked like some infection.He wants me to follow it up in 3 months with pet/ct.
I will be glad to know something from you all.
S.Vinayak
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2018 at 8:47pm
Getwellheather,

I'm so sorry you may be dealing with a recurrence.  Steve goes by the member name SagePatientAdvocates.  You can search for this name in the Memberlist and send him a private message.  Steve is usually very responsive.

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 (0) Thanks(0)   Quote GetWellHeather Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2018 at 8:41pm
I've seen Steve's name here many times but I have no idea who this is or how to reach him. Will you please share? I just found out my cancer has likely spread to my lungs and I'm looking for assistance. Thanks so much and best wishes on your journey!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2017 at 11:26am
In not sure if you're asking me or Calinative65,but after the length of time between our diagnoses it does not matter. Both the breast cancer teams at UT Southwestern and MD Anderson agreed that this HAS to be brand new cancer. TNBC would not have just "lurked" alive and well in breast tissue for 6-8 years then started growing. That's what makes our situations so rare. They only see a brand new local recurrence (breast) in women who have the BRCA genes normally. What TNBC women have a high recurrence of in the first 2 years is residual disease growing and showing usually outside the breast, but sometimes within the breast if it was not all gotten with treatment. After 2 years, there's not much chance of residual disease showing up, because it's usually such an agressive, fast growing cancer (grade 3). Both UT and MD are studying my genome looking for flaws they've not seen before - it's that rare. I also have almost no female relatives and my grandmother's died in 1928 & 1941 of "female issues". 26 boy cousins, only Uncles and Great Uncles.
PS: this is why a lumpectomy, with wide clear margins, with chemo and radiation is as safe an option as mastectomy. Calinarive65 is the first person I've seen with this situation here except me! And she didn't have a lumpectomy.... The studies are true :)
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2017 at 12:10am
Did you have
a complete response to treatment initially?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2017 at 10:03am
Remember that body scans always turn up "stuff" that they have so further testing on. You've lived in your body a long time and it's an ever changing thing! My PET showed "something" going on in my thyroid and nasal cavity. Thyroid bloodwork and ultrasound showed it was probably normal inflammation . 6 mo follow up it was gone. Went to an ENT who stuck a camera up my nose and that was just inflammation as well. Tedious and scary!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2017 at 9:57am
I just "felt" it was back. I went in for emergency mammogram and ultrasound and they saw nothing but scar tissue. My medical oncologist had left my hospital so they signed me up with the head of the department and she saw me right away. I told her I still felt it was back. She said, "I always lean toward listening to survivors" and ordered a breast MRI with contrast. My insurance said they wouldn't pay for it I got it anyway and there it was - it lit right up, just under 2 cm x 1 cm. Biopsy confirmed. I started searching everywhere for info and there was ZERO - that was terrifying! And our TNBC guardian angel Steve got me into an awesome Dr. at MD Anderson and it was his chemo advice that I followed. I went back down to MDA every 3 weeks for scans to make sure it was responding. My UT Southwestern Drs and MDA Drs worked together as a team, it made me feel like I was getting the best care in the world, it gave me faith I might just make it out alive again. I had a really tough time of it this time, chemo made me sick, hospitalized sick, and reconstruction failed so I was in wound care for 9 months :( but I'm loving life these days, just grateful for everything and not sweating the small stuff
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Calinative65 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2017 at 1:22am
Hate you went through this, but your story gives me hope I am not alone. Was also told very rare 10 years out with first dx stage 1. They want a body scan for mets which terrifies me to the core. I'm scheduled to go to md anderson asap to deal. I've had double mastectomy and 8 rounds od ACT but no radiation. All docs thought this was scar tissue/fat tumor and were shockec it had cancer cells. Just praying for a good outcome. Thanks for sharing!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 04 2017 at 7:54pm
I just went thru a recurrence. January 09 2.5cm lumpectomy with 2mm on 1 lymph node, full axilla dissection. AC & Taxol plus radiation. Clear until June 2016, I just felt something. Stage 1 spot in exact same place, exact same pathology. They say that this is rare as hens teeth. No studies to deal with it, just had to make it up. I did Carboplatin and Taxol, then mastectomy. NED at surgery so I was done. So far so good! What are they suggesting you do?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Calinative65 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 04 2017 at 1:08pm
I'm new to this forum...hello!!! Has anyone had a local breast recurrence in same area of previous cancer after mastectomy? Was dx 10 years ago with stage 1 TNBC. Had double mastectomy and 8 rounds of chemo. No radiation. Have felt great until this 1 cm tumor in left breast was found. Waiting to have scan. Thanks for any information!!! Blessings
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Post Options Post Options   Thanks (0) Thanks(0)   Quote katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2017 at 4:01pm
thnq nslay.I want my onco to follow that nodule but he is not worried at the mo
ment now.He is going to follow it in one year.Meanwhile my mom has tickling cough.My mind is like a horse reaching here and there.Terrified right now.
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