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CiGi View Drop Down
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    Posted: May 12 2010 at 6:46pm
Hello everyone. 
 
I just registered to this site.  I had surgery to remove a lump from my right breast and 3 lymph nodes on April 28, 2010.... the results came back tripple negative, grade 3, stage 2 (since size was 3 cm).  The margins were clear and the lypmh nodes were negative.  I'm not sure how I'm taking it.  I'm going to see an oncologist on Friday so I'll see what they have to say about my treatment going forward.  I'm only 40 years old.  I have other health issues (hypertriglyceridemia - which causes my pancreas to swell when my triclycerides go over 2,000).  The last occurance of pancreatitus was Sept 2008, I was hospitalized for 50 days because it ultimately caused my lungs to fail and I was in the ICU on a vent for 21 days.  Anyway, my question is if anyone can shed some light, I had over 24 chest x-rays in 30 days with my lung issue, plus 2 CT scans (one covering my lungs, one covering my pancreas) plus follow-up lung x-rays, do you think this caused my tumor especailly since these were performed when I was 38 years old?  I've read a lot about how sensitive breast tissue is to radiation between the ages of 40-45?  I almost did not make it out of the hospital with my lungs and now I have a whole new issue to deal with.   I know that mamograghy will detect growths, but I'm afraid to have another one, and I went through 2 MRI's, I'm really afraid it will cause my tumor to come back or spread.
 
And one more thing - I did not have a drain tube at the surgery site, but I have fluid in my breast where the lump was removed.  I've read it's normal, but I can hear the fluid move when I walk, how do I know if there is too much fluid that would need draining? 
 
Thanks everyone,
Good luck to all of you.
CiGi   
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 9:11pm
Radiation to the chest is known to promote breast cancer, so I wouldn't be surprised if it played a role.  Though I don't know enough about what dose one needs to increase risk to know if 24 chest x rays plus 2 CT scans is likely to have played a major role.    As for mammography - at this point, you have more to fear from a recurrence than from mammography, so I'd follow protocol if I were you.  After you're done with chemo, you'll alternate between mammograms and MRIs every six months for a few years.  That's not so much radiation. 
Good luck with treatments and everything, and always feel you can come here to say what's on your mind or ask a question.  The women on this site are very loving and knowledgeable.
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2010 at 7:21am
Welcome CiGi,
I am so sorry you have had to go through all of this. I agree with Denise about the mammos....Triple neg is noted for recurrence and that's what you have to look out for.
You have been through so much for such a young person. My heart and prayers go out to you along lots of big cyber-hugs.
We have a Spiritual Support thread if that is something you might be interested in. You can just jump forums to Support Groups then Spiritual Support.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2010 at 7:34am
Dear Cigi,

welcome to TNBCF. I believe it is a wonderful resource...

Have you had genetic counseling, been tested for the BRCA mutation?

sorry you are dealing with this..

please advise re: BRCA....if you are more comfortable please send me a PM with the info.

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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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2010 at 3:14pm
Hi CiGi,

I had a mastectomy with/tubes so I'm not sure if a lumpectomy is done with or without tubes.... Anyway, even after my tube was removed I had excess fluid at the surgical site that had to be aspirated. Maybe you need to see or call the surgeon and find out if the fluid is normal. If it is excessive it could get infected and cause more pain and problems.

Good luck with everything.

Love in Christ,

Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryinSarasota Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2010 at 3:27pm
Hi CiGi,

I had a lumpectomy about two years ago. Since that time I have had fluid removed 3 times. My tumor wasn't huge but the site is very messed up from the way the surgeon did the lumpectomy. I guess he just figured I would be having a recon. Anyway, I was there yesterday with my newer surgeon and he removed 80 cc of fluid. He said it is chronic seroma. So unless I get it removed (The breast) it will always fill back up. I never heard of chronic seroma and I type radiology reports all day long. Now I have a huge hole where the fluid was. Take that into consideration.

I hope this helps.

Mary
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KiwiPom Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2010 at 7:49pm
Hi CiGi...
My mum has just had her dx of TNBC and her tumour is 3cms too - no signs of it having spread before chemo started 2 days ago.

Fight as hard as you can and have strength and hope - i know its a cliche but i found this site 2 days ago and it has already given me a wealth of support i needed to support my mum...

As we say in New Zealand, kia kaha, stay strong... x x
Rosie.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2010 at 8:03pm
Hi Cigi,

Just wanted to pop in and say hello.  Sorry you had to join us but this site is wonderful.  Please feel free to post any question or just to vent.  We'll help you through your journey.

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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CiGi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CiGi Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2010 at 4:15pm
Thanks for everyones comments.  I went to the oncologist today.  I will be going for a bone scan and CT scan next week to make sure my breast bone and lymph nodes under the breast bone are okay.  She's seems very positive based on all of the other tests and my family history.  I will need to go for Chemo and radiation treatments soon.  I'm not really looking forward to going through with it since I have other conditions and do not want to also damage what progress I've already done (with my lungs and pancreas).  I meet with her back in two weeks to go over the scans.  We'll go over my treatment schedule then.  I think the news of all this really impacts my family more than me, I usually handle things strongly and positively.  My husband lost his mother from breast cancer.  They found the tumor, she went for chemo and it spread horribly all within 6 months.  I never got to meet her because she was sick when I met my husband.  Telling my husband about getting chemo I think was worse for him than for me finding out.  I've been through so many other issues that were very serious so I handle it better.  When my lungs failed in 2008, I had a 40% chance of not making it and it looked pretty grim the first week in ICU.  I'm a fighter, been one since birth.  My tryglyceride issue has been since birth, I had a blood tranfusion at 15 months old and I kept going from there.  Its just one more thing to overcome.  I'll write back when I get the results of the scans. 
 
Are any of the side effects from chemo and radiation permanent?  I'm concerned of waht other issues could arise after this.
 
Thanks everyone.  Have a good weekend.
Talk soon.
Carol (CiGi) 
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CiGi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CiGi Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2010 at 12:03pm
My CT scan and bone scans were all clear.  I was very nervous about them.  Having surgery on Friday for the chemo port.  Starting TAC treatment on Monday for 6 treatments every 3 weeks.  Hopefully I will be able to keep working and handle the treatments.  My boss told me to take off when I need to and if I want I can work from home if I don't feel like driving in since it takes me an hour one way.  I had to turn down a promotion, I would have been going though training for the next three months and travelling a little, so I did not think it's the right time for me.  I work in accounting for a large company and I consolidate their financials for a whole segment.   There are other areas that I'd rather be promoted to so I am fine with it.  Got so much stuff going on with doctor appointments, I feel like I live at the hospital/doctor's office!
Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2010 at 3:00pm
Welcome CiGi:  sounds like you are really upbeat and positive about this treatment and THAT IS THE KEY TO SUCCESS! Just wanted to let you know you have a wonderful bunch of sisters and brothers here on this site.  We also have the spiritual thread if you find yourself wondering.  It is very uplifting and relaxing.....Carol is our prayer warrior and she doesn't let us go a day without prayer!  Keep up the great outlook on life and you will be fine! 
Your sister on the journey, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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CiGi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CiGi Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2010 at 10:16am

Just an update - I was tested for genetic testing, did not get results back yet.  My oncology group has a training session to prepare you for chemo treatment, the nurse what surprised of the knowledge I have of the chemo and the side effects.  Been reading a lot.  Made the training go quick.  I got my port in on Friday 6/11, it still hurts to move my neck.  On 6/15 I started my 1st chemo treatment.  I'm on TAC.  My schedule is every three weeks for 6 treatments.  So far I'm holding up well.  I was tired the day of treatment, a little upset stomach the day after and bones were tender from the shot, but feeling pretty good today :)   When I came home from my port surgery last week, my greyhound Josie sniffed me over and her teeth were chattering like she knew it was something serious.  It's amazing what petís sense.  When I came home from treatment, both of my pups sniffed me over and lay by my side.  I worked from home for 2 days and was back in the office yesterday.  My husband is so helpful and caring and my job is very flexible with my needs.  Hopefully it'll be a not so bad journey over the next 4 months, we'll see.  Staying positive.  It's hard to explain to people that I have to do chemo to make sure it does not return even though my nodes were clear, scans were clear and margins from lumpectomy were clear.  And explain that TNBC is different than other breast cancers.   I had recently read an article on Yahoo on US being over radiated from medical testing and the risk of cancer, I believe that is my case.   I've been through probably an abnormal amount of scans in my lifetime with my other health issues.  But looking forward not back. 

Talk to you soon.
Carol
Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sugar77 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2010 at 10:37am
Carol - glad to hear your first treatment went well.  Sounds like you have a good support network, which is important. Your attitude is also upbeat and positive and I'm sure will serve you well on your journey.

Sherri
DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2010 at 11:26am
Hi Carol,
Hang in there - you're definitely a fighter, and you can do this!
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2010 at 11:31am
Carol,

Doesn't if feel good to have so much knowledge?  It helps when discussing tx with the docs.

You are a strong person and will get through this treatment.  Just visualize that the chemo is killing any stray cells that may have gotten loose.

I felt the same way after dx trying to explain to everyone why I needed chemo with clear nodes.  At first I tried to explain all about tnbc and why it was different from other bc.  Now I just give them the abbreviated reader's digest version!

Keep us posted on how you're doing.

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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Lindsey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lindsey Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 1:24pm
Hi all!
Just found this site.  Diagnosed last Aug., went through 6 rounds of TAC and then radiation.  Now I am just trying to figure out to do with the rest of my life... and figure how this all changes and should change my life.  Confused
Lindsey
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 3:50pm
Hello Lindsey,
I am sorry you needed to find this site, but happy that you did. I notice you live in NC. So do I. I live near Wilson, in the eastern part of the state. Where do you live?
Sounds as though you've had the standard TAC treatments. What kind of surgery did you have? Can you share your stats with us like stage, grade, size, reconstruction, etc. Also, are you single, married, etc. There are so many components to a persons life that it's hard to give advice without knowing a little about a person.
I can tell you that you will find loads of help on this site. There are women from all walks of life just waiting to help you.

I am 69 years old and married. I was diagnosed 4 years ago after a routine mammogram. I had a 2cm ductal carcinoma in my left breast. I had a mastectomy and then chemo. 4 rounds of AC and 4 rounds of taxol & gymzar. I did not have radiation because I had a mastectomy. I also did not have reconstruction. I really didn't want to endure any more surgery and it wasn't that important to me. I was still working when diagnosed and retired last year at age 68.
I am changed mentally and physically. Not necessarily for bad but different. Please share with us and we can share more.

Love in Christ,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sugar77 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 5:37pm
Hi Lindsey - welcome to the TNBC website.  I'm also at the point where I'm trying to figure out how this changes my life.  I've recently completed radiation and will be returning to work in Sept. I went on leave last December, when I started chemo. 

Sherri
DX IDC TNBC Oct. 27, 2009, age at diagnosis 45, Stage 1, Grade 3, <1 cm, 0/2 nodes, lumpectomy, Taxotere/CytoxanX4, finished Feb. 8, 2010, radiation completed Apr. 21, 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hummingbird10 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 9:12pm
Hi Everyone,
Am new to the site. Diagnosed with tnbc and had mastecomy of left breast
three weeks ago. Main tumor was 3 inches and had axillary dissection of
17 nodes, two of which were positive.  Grade 3, stage IIIA-- heading for
chemo and radiation.  Any suggestions?  I am requesting genetic testing
for BRCA 1/2 mutations and maybe molecular profiling if I can get it somewhere.
Any help from this forum is appreciated.  This is no fun figuring out all the
research, meds, etc.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2010 at 10:00pm
Hummingbird,

Nice to meet you.  Pam has posted lots of information in the TNBC News/Resource Section.  Please check it out, there is some great information posted.

Have you read the brochure about TNBC?

http://www.lbbc.org/data/media/LBBCunderstandtriplenegative.pdf

Please ask questions.  There is usually someone that will come by with some helpful information.

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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