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Triple Negative BC & Testing/Scans

journey4life
Posts: 2
Joined: Sep 2012

Hi BC sisters,

I was diagnosed with TNBC (stage IIa, grade 3) on 11/11/2011, had bilateral MRI and am BRCA 1 positive. I had bilateral mastectomies, dose dense chemo (adriamycin, cytoxin and taxol) and 33 rads. If anyone has a similar diagnosis to mine, I'd like to know what follow-up tests and/or scans you've had since you were diagnosed, during tx and since you've completed tx. Thanks!

joannstar
Posts: 353
Joined: Nov 2010

with Stage 1C, grade 3 TNBC on 6/29/10. I had 2 lumpectomies (2nd for clean margins on 8/19/10), 4 rounds of C/Taxotere, 2 rounds of C/Taxol (switched due to ankles swelling) and 33 rads (finished 4/1/11). For 2 years I saw my MO every three months and he would run blood tests for tumor markers. I had a PET before chemo on 9/1/10 and then again on 2/1/12. I had a bone density before starting treatment and again last month @ 2 years. I had a biopsy on the other breast on 9/9/11 which was clear. I get mamos every six months on the breast cancer breast and yearly on the other one. I've just graduated to seeing my MO every 4 months for blood work now that it is 2 years past surgery.

Hugs,
JoAnn

jessiesmom1's picture
jessiesmom1
Posts: 723
Joined: Jun 2010

I was diagnosed with TNBC (Stage IIa, grade 3) in December 2009. I had a complete axillary dissection, right mastectomy with an expander inserted and then chemo. I had 4 rounds of A/C (adriamycin/cytoxan) and 12 rounds of Taxotere. No radiation. I have also had 2 reconstruction surgeries. I see the oncologist every 3 months (just lengthened to 4 months) and have blood drawn prior to each visit. This last time my liver function numbers were elevated and my oncologist was a little concerned so I had an abdominal ultrasound to see if anything nasty was growing that would cause the elevation. No cancer found! They did, however, find a few little gallstones. Big whoop as my kids say. I am taking a drug for an unrelated medical issue that probably is causing the elevated liver numbers so I need to follow up with the prescribing doctor. I have had 1 mammogram on my remaining/left breast since treatment was complete. I almost hit the floor when the radiologist said she saw a spot on the image that needed to be biopsied. The biopsy showed it was simply scar tissue from the breast reduction done on that side at the time the reconstruction was done on the right/mastectomy side. I have not had any other imaging tests done since treatment was complete.

I wish you the best of luck as your journey continues.

IRENE

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I am not TNBC but want to welcome you to the site, though I am so sorry for the reason you are here.

Hugs and prayers,

Angie

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I was dx 11/23/11 TNBC Stage ll grade 3, had 6 rounds of TAC every 3 weeks, then bi lateral mastectomy with expanders in May 2012. No Node involvement. Got hit with an infection 3 weeks ago and had to have expanders removed 10 days before exchange surgery was scheduled :(. I am scheduled to see my BS every 6 months and my Onc every 3 months. I will see Oncologist for 5 years, BS for 2.

journey4life
Posts: 2
Joined: Sep 2012

Ladies, thank you for your responses. Which tumor markers are being checked? My MO will check CA15-3 in October prior to my appointment with him (3 month follow-up).

Irene - I'm so glad your elevated liver function wasn't a result of cancer! And also the biopsy. I'm sure you were on pins and needles waiting for the results.

I see my PS on the 11th and hopefully, we can schedule my exchange surgery. I am so tired of the TEs! I've had them since January and its time they came out! During the TE surgery, I'll have an oopherectomy as a precaution since I'm BRCA 1+.

Cancer...the gift that keeps on giving. I hate it!

Lisa

joannstar
Posts: 353
Joined: Nov 2010

the CA15-3 and the CEA.

Good luck to you.

JoAnn

JoAnn4818's picture
JoAnn4818
Posts: 83
Joined: Jan 2011

Hi Lisa,

I was diagnosed with Stage 2 TNBC in September 2010. I had one lymph node affected. I had 2 failed lumpectomies, switched to a major medical center then had a single mastectomy. I had no radiation but I had the same chemo as you. I think I had every chemo side effect in the book - Uhhh. I don't like to even remember it. I was done by April 2011.

I had the tissue expander on the mastectomy side and I know what you mean - it hurt. I had the exchange surgery with a lift to the other breast at the same time. It came out really bad - I'm going to need it done again.

I see my medical oncologist every 3 months. She does not take blood samples, does not check tumor markers and does not prescribe scans. When ever I have a problem she's really quick to check it out though. I had very bad headaches for a few weeks in February and she had me get an MRI of my brain. I can't have CAT Scans because I'm allergic to contrast dye. The MRI showed something abnormal so I had to wait 3 months and check again and they found some abnormal veins but not cancer. She says if I have any symptoms that last longer than a couple of weeks we'll investigate. She quickly got me the help I needed - a quick MRI, a brain surgeon for a second opinion, etc. so I feel well supported.

How I wish we Triple Negatives could take a medication to help prevent this beast from coming back. For now I just eat my blueberries and take a low dose baby aspirin. I eat a low fat, low sugar diet and treasure each day. I wish you the best!

JoAnn

ksf56's picture
ksf56
Posts: 203
Joined: Apr 2012

I am also a TN. I was diagnosed 6/15/11. I had 2 lumpectomies to reach clear margins. 4 AC every 3 weeks and Taxol every week for 12 weeks. 33 Radiation treatments followed. My Doc doesn't do markers, blood tests (since the first post treatment visit) nor scans unless symptoms develop and last 2 weeks or longer +/or get worse. I recently started with headaches with flashing lights etc. I had a MRI immediately and it came back fine. I've been diagnosed with migraines and being treated. I see the doc every 3 months for 2 years then the frequency will change. I will have a yearly mammo as prescribed by the RO & MO. We're all being vigilant. I don't want to be exposed to any more radiation than absolutely necessary - I've gotten more than a lifetimes dosage just with my treatment as have all those who have had them. Now what will more cause?

Best wishes to all!
Karen

Cinkal's picture
Cinkal
Posts: 161
Joined: Jan 2011

I was diagnosed
January 2011, TNBC stage 2A no node involvement. I had the same chemo as you, followed by radiation. I have a mammogram every 6 months for the cancer breast and every year for the other. My chemo onc does not want any blood test or scans. She tells me to alert her of any problems and she will do test only if neccessary. My radiation onc wants blood test before every appointment.

PADANAG
Posts: 20
Joined: May 2012

I was dx'd with stage 3A TNBC in April 2011. I had 4 rounds of A/C and 3 rounds of Taxol. I could not take the 4th taxol treatment because of an infection. After that i had a double mastectomy with tissue exspanders. Then 33 radiation treatments. My onco would do blood work every three 3months since i completed the chemo on 8/8/11. I was shocked that they didn't do follow up scans unless there was a problem.

On 6/14/2012 there was a problem. I was rushed to the hospital with some problems sort of like a stroke but they found a brain tumor instead. I had it surgically removed and then had a gamma knife treatment in July. Then I finally got a follow up Pet scan and bone scan which came back NED, thank God. Now I will be getting blood work,CAT scans and MRI's every 3 months.

I am not trying to scare you but if you think you would feel more confident with some follow up imaging than you should push for it.

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