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vickyann View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2018 at 8:57pm
I remember like it was yesterday finishing Chemo and the fear of cancer returning.
If I went to a movie they would advertising a Christmas or summer blockbuster and I would wonder if I would be alive. It is very scary. Everyone has supported you thru chemo and everyone thinks....yeah it’s over..... The fear is just beginning for you. Let me add you have been sick and haven’t been thinking about the future. Your only thought is getting thru chemo....

NOW for the good news...... Hakuna Mata the kids movie..it means no worries for the rest of your life.... in other words..worrying is a waste of time..... if it’s 3 years you have ahead or 50. Don’t use your days in fear. Be happy, positive, and you will feel better....trust me...
I am an 11 year TNBC survivor.
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 12 2018 at 8:59pm
Thanks for the wonderful update Falcon!!!!!

hugs and love,

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 Falcon Quote  Post ReplyReply Direct Link To This Post Posted: Feb 12 2018 at 7:22pm

My sister is now over 20 years a BRCA1 survivor and my daughter is also BRCA1 survivor for 8 years.


My daughter Jessica
Treated and Healed!!!!!
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Post Options Post Options   Thanks (2) Thanks(2)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2018 at 9:09pm
Dear All,

All day I have been thinking about the best way to commemorate the 10 year anniversary of me finding my breast cancer, and 3 weeks later hearing "you have triple negative breast cancer."

I  am well, and often forget that I went through the grueling 8 months of treatments..that did land me in the hospital for 8 days (after round 3 of TAC)....but, I'm hear to say it was all worth it!!!

I have lived to:

Celebrate 35 years of marriage
See both sons graduate from college - one now with a doctorate
Continue to work as a nurse
Enjoy music ~ especially bluegrass : )
...and so much more

Hang in there, and if you were lucky enough to find your cancer early, thank God/your lucky stars/the Universe....

Love to all,

Kathy



Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Falcon Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2018 at 2:49pm
Sister was dx at age 32 will now be 67 this February!

Daugher was dx at age 32 will be 41 this March!
My daughter Jessica
Treated and Healed!!!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 10:38pm
Natalie,

You are so welcome and I hope you can get some answers.  There is a genetic test that is very affordable, called Color Genetic Testing.  There have been some threads talking about this expansive test that is very affordable.  The test costs $249.


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 Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 9:40pm
Thank you very much Donna.
I have the link and will be sharing with my oncologist, I will call and make appointment in near future to investigate further.
If I weren't tested it may be a hard sale since the testing is usually done on those with colon or uterine cancers (mine was precancerous), and also the fact that I now only have NYS Medicaid.
Thank you again, you have been a wonderful resource for all of us.
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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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: Jan 23 2018 at 9:10pm
Natalie,

You can ask if they tested you for Lynch Syndrome.  If positive for a mutation, they may recommend frequent colonoscopies (every 1 to 2 years).  Colonoscopies would be preventative.  Also, they may recommend a preventative hysterectomy since there is a link to some gynecological cancers.



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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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: Jan 23 2018 at 9:07pm
Natalie,

Two new breast cancer genes emerge from Lynch syndrome gene study

Researchers at Columbia University Irving Medical Center and NewYork-Presbyterian have identified two new breast cancer genes. Having one of the genes—MSH6 and PMS2—approximately doubles a woman's risk of developing breast cancer by age 60.

The study, in collaboration with GeneDx, a genetic testing company, was published online today in Genetics in Medicine.

The two genes were previously known to cause Lynch syndrome, an inherited condition that raises the risk of colorectal, ovarian, stomach, and endometrial cancer. Lynch syndrome is the most common inherited cause of colorectal cancer, accounting for about 3 percent of newly diagnosed cases. One in 440 Americans has a gene variant that causes Lynch syndrome.

Researchers had suspected that Lynch syndrome genes may also cause breast cancer. Some studies had found a link, whereas others had not.

"People with Lynch syndrome aren't thinking they may also be at risk for breast cancer," said Wendy Chung, MD, PhD, the Kennedy Family professor of pediatrics (in medicine) at Columbia University Irving Medical Center, clinical geneticist at NewYork-Presbyterian/Columbia, and the study's senior author. "Given the fact that genomic analysis is becoming more common in patients with a personal or family history of cancer, we have an opportunity to do more targeted breast cancer screening in women who carry any of the genes associated with risk for this disease."

The researchers analyzed a database of more than 50,000 women who had undergone multi-gene hereditary cancer testing between 2013 and 2015. Of these, 423 women had a mutation in one of the four genes that cause Lynch syndrome: MLH1, MSH2, MSH6, and PMS2.

Additional analyses revealed that women with a mutation in two specific Lynch syndrome genes—MSH6 and PMS2—had a two-fold higher risk of breast cancer compared to women in the general population.

Based on the incidence of cancer in the study population, the researchers calculated that about 31 to 38 percent of women with cancer-causing MSH6 and PMS2 variants will develop breast cancer, compared to around 15 percent of women in the general population.

"The new study suggests MSH6 and PMS2 should be added to the list of genes to screen for when there is a history of breast cancer," said Dr. Chung, who is also director of the clinical genetics program at NewYork-Presbyterian/Columbia. "Screening for these genes also would give these families potentially life-saving information to prevent colon cancer by encouraging individuals with the genes to increase the frequency of their colonoscopies."

Currently, testing for Lynch syndrome genes is generally only done when someone has a personal or family history of colon or uterine cancer.

https://m.medicalxpress.com/news/2018-01-breast-cancer-genes-emerge-lynch.html

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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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 7:56pm
I had the Mira lax/ ducolax prep.
Not bad at all really.
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 7:55pm
Donna,
I had to look up lynch syndrome, honestly I don't know if I was ever tested. Since it appears to be genetic would that have been one tested with the bread? I know they tested a number of things.
Guess I need to ask huh? But then what preventative would there be anyway?
Yes, my colored talk surgeon said every 3 years, he also said if I ever have any doctor tell me five years then find another doctor
I'm a mess and getting messier every year, now I have a surgical hernia from that colon surgery, same surgeon tells me I need to lose weight (easier said then done)
Also getting epidural shots this Thursday for herniated disc in my neck. Scared!
I keep plugging along though :)
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 7:54pm
Natalie and Kellyiess,

Not all gastro docs make you drink the Go-lighly, or whatever that huge jug of tear/sea water is called.  Due to some flat and precancerous type polyps versus the more benign that grow on stems,  I'm on an every 3 year schedule.  On my 2nd 3-year colonoscopy my oncologist recommended her new gastro who uses purely OTC prep.  Miralax, Metamucil and Dulcolax.  He does recommend if you're constipated badly to start with a bottle of Magnesium Citrate, but the lemon flavor tastes fine over ice and there's no RX involved.

You might ask your doctors if you could do a similar type of prep.  I understand more gastrointestinal doctors are going this route, at least in my area.

Hope all turned out well for you both!

xxx
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 7:52pm
Donna,
I had to look up lynch syndrome, honestly I don't know if I was ever tested. Since it appears to be genetic would that have been one tested with the bread? I know they tested a number of things.
Guess I need to ask huh? But then what preventative would there be anyway?
Yes, my colored talk surgeon said every 3 years, he also said if I ever have any doctor tell me five years then find another doctor
I'm a mess and getting messier every year, now I have a surgical hernia from that colon surgery, same surgeon tells me I need to lose weight (easier said then done)
Also getting epidural shots this Thursday for herniated disc in my neck. Scared!
I keep plugging along though :)
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 7:21pm
Hi all,

First, I'm delighted to read your daughter is a strong survivor for many years, Steve!  That's true awesomeness and inspiration for many!

It will be 6 years since my bilateral mastectomy, which you can see in my stats was in March.   My doctor counts it differently and says I've already bypassed 6 years.  I look at it as the end of chemo which wiped out what Taxol did not.

My very best to all.

xxx
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2017 at 2:09pm
I just scheduled my first colonoscopy for early February..I could've done it now, but I'm dreading the prep so much. And my December last year was so awful...and..and I'm making up excuses left and right, lol. Thanks for posting, it's made me stiffen my spine and commit to the damn test So glad you're doing well!
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2017 at 12:18pm
Natalie,

I know the feeling of shellshock.  Did they test you for Lynch Syndrome?  Do you have to get more frequent colonoscopies?  

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 Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2017 at 8:06am
Haven't been on the blog in a while, hello all!
Diagnosed 2011, 6 years & still here. continued MRIs annually, just had whole body bone scan all clear.
Did have a PET scan November of 2015 which showed I had something in my colon that took up a lot of isotope, was precancerous and 1 foot of colon came out but all clear nodes clear. I delayed going for colonoscopy because I didn't want to drink the sludge, turned out i didn't have to drink the sludge.
What is that?! Been through a war with cancer & other challenges and was afraid of that. Shellshock maybe.
Love & light to all

TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2017 at 5:42pm
I was diagnosed in May of 2010.Still here 7 1/2 years later I still worry but it gets less.
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (1) Thanks(1)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 04 2017 at 10:51pm
10 years later... I am doing fine just fine! I hope this helps! There is life after tnbc.
Hugs to all...
Denise 
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Dec 04 2017 at 1:40pm
Update

I have great news.  I finished all treatments and headed back into my "annual" mammogram last week.  They used the 3D bilateral imagery.  To be honest, the mammogram process did not hurt as much as I thought it would.  I received my letter in the mail over the weekend with the words "normal mammogram result".  I met with my PCP and she completed my "MD breast exam" which my medical oncologist said I must have done by a doctor every six months.  All good.  My blood work (all the normal stuff) came back great with the exception of a low white blood count (they said that would be the case for the first 18 months post chemo).  I head to my medical and radiology oncologist in January for my six month "oncologist" check up.  I will be requesting a plastic surgeon consult as I have decided to reduce the unaffected breast down to the same size as my affected breast (leveling them out).  I have opted not to have surgery on my affected breast because of the extensive radiation.  

I am posting this because I needed to see something like this last year when I was diagnosed.  Last Christmas I was in surgery, petrified and heading into this chaos.  Most of 2017 I was in treatment from surgery, chemo, RADS, port removal, CT scan and check ups.  I was afraid at the front end of this journey and once the plan was put into motion, I settled down.  My hair is growing back and I have learned to simplify my life.  I don't worry about all the things I used to.  Am I better from this experience?  yes is the honest answer.  I don't know if this helps anyone at all but I wanted to post on the off chance that someone needed to hear this today. 

May God bless you during this time - I know He has blessed me.

Penny 


DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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