Triple negative beyond 2 years- What was your treatment?

Meece

stlstroller, I am sorry that you have had such a tough time.  I am with you, I asked my onc when she counts "survival" from, and she said from diagnosis.  After all, as soo as you know you have it, the you have survived...one day at a time. 

I have heard that your situation is an anomally, once a triple neg gets past the 5 year mark, you have something like a point two percent chance of triple neg returning.  My onc told me his, but cautioned me that there is not a guarantee that a different cancer won't rear it's ugly head.

I don't recall having the genetic test being done.  Do they do that from the biopsy or from blood testing?

I am glad you found this site, you will really appreciate the information here as well as arm loads of wonderful supportive women who can identify with what you have been though and may go through.  Best wishes (((hugs)))

stlrepke

Meece,

The genetic testing can either be done with blood work or a mouth swab. It didn't seem to be done regurlary years ago, I wish it had. I might not be in this situation now if I had been tested in 2002, I might of opted for the mastectomy then and would not now be dealing with a new cancer.

Meece

Stlstroller,

My cancer "team" really dropped the ball with me, and I have no idea what they missed telling me.  That's why I changed where I go for care.  I am actually going to have my first scan since treatment in the next few months.  Once I finished chemo and radiation, the primary cancer care people dropped me in a wink.  I was so uninformed that it was over two years before I saw an oncologist.  I don't know if I should have them do the genetic testing or not.

I was given the option of lumpectomy or mastectomy, but was given no reasoning towards either.

Take care of yourself and those precious boys!

tibet

Meece,  You said you will go to have a first scan since treatment. I saw you were dx in 2003. Did you never have any scan post your treatment which must have been 5 years? What kind of follow up test did you have during the last 5 or 6 yrs? Why do you need to do the scan now? How old were you when you were dx in 2003? If you dx at young age, it is better to do the gene test to see if BRCA mutation is there as the mutation will put one at high risk for later ovarian cancer or another BC. 

Stlstroller, your second dx was a new primary not a recurrence as it has been so long in between. What was your treatment the first time? What kind of chemo did you have back in 02? Did you have any family history of BC or ovarian cancer? 

tibet

Meece,  You said you will go to have a first scan since treatment. I saw you were dx in 2003. Did you never have any scan post your treatment which must have been 5 years? What kind of follow up test did you have during the last 5 or 6 yrs? Why do you need to do the scan now?

Stlstroller, your second dx was a new primary not a recurrence as it has been so long in between. What was your treatment the first time? Did you also take the ovary and the tube out? (Is it called hystectomy?) I may also have to do it. I don't have family history but seems like there is BRCA1 mutation in my genetic testing which shocked my doctors and myself. My doctor is retesting it at a different lab. Did you have any family history of BC or ovarian cancer? I am Asian and I read the BRCA mutations are not very penetrating among Asians comparing to other ethical groups, therefore the mutation can hidden for many generations until it pops up. 

g94u67

Maybe I shouldn't be here (going through recurrence) but I totally plan to beat it this time and make it beyond 3 years!

Keep going TN sisters!

Jeannine

Angie59701

I am closing in on my 2 yr. I was diagnosed Nov. 1, 2007. I had a mastectomy of the right breast. I had chemo but no radiation.

Meece, I am sorry to hear about your so called team. Hopefully you have found a place that will keep up and take care of you. I wish you the best. I had the genetic testing and it came back as negative.

Jeannine, I'm praying for you!! I know you'll beat it. You all have a wonderful day and stay positive.

stlrepke

newalex,

Yep, new primary. Isn't that BS, I have to say once is enough for everyone.

I honestly don't remember the triple cocktail that I got. I can find out though if you are really interested. I do remember that one of the chemo drugs was adriamycin but for the life of me I don't remember the other two. I got all three at one time once every three weeks and it really kicked my butt. Took about 5 days to get up and going again but I managed to get 6 of those treatments in and then moved on to radiation for 6 weeks.

I had one aunt (my father's sister) who had gotten breast cancer at a young age with a recurrence about 5 years later. I do not know what her stage was or path was originally but of course come to find out that I do carry the BRCA 1 mutation so I'm sure it's from that side of the family.

Meece

Newalex,

I have recently had breast abnormalities, and my left lung seems to be giving me problems, so the scans are just to get a baseline for my new team.  When I requested my medical records from my first "team" I got about 22 pages.  What a joke!  9 pages were about an MRI for a severe headache I developed a month after finishing Radiation.  I read through it and the Chief Rad.  stated that my skin was unremarkable except as noted that the Port-a-cath was present on the anterior chest wall.  Ummmmmmmm.  I didn't have a port-a cath!  They also stated that I had had a breasst MRI at thier facility with and without contrast.  Well, the dr. forgot to write with contract on the order so after they got the i.v. into my arm, they came out into the waiting room and removed it bacause it wasn't on the order.  The MRi was not conclussive because the contrast wasn't used.  But they still wrote the report that they had.  All the scans I had "per-treatment" are missing, so my new oncl is just trying to get things together.

KPolasek

I am so sorry to hear about your second breast cancer.  Dang this stuff anyway!!!!  I had a lumpectomy with my diagnosis .... I am big .... big .... and I sometimes think maybe I should have just had a double mastectomy.  Yes .... I think about the cancer ..... less and less .... but nevertheless .... it is on the edge of my thoughts .... I had my mamm and both sides came out clear .... thank you for your response.

Blessings,

Kay

bottkota

I was triple neg when I was diagnosed in April '05.  I did AC and Taxol.  Thought all was well in my world until just this week when a bone scan showed a spot on my sternum.  Am not sure if it cancer returning, more testing will need to be done.  I was told by my oncologist that the first two years for us triple neg gals is the most critical as that is when it is most likely to recur.  Once you reach the 5 year mark, your chances decrease again even more.  Now I am not so sure, so close to that 5 yr mark and now this.  I had a bilateral mastectomy along with chemo, no rads because of mastectomy.  I had no positive lymph nodes either.  Thankfully I have had a great team of doctors who have been keeping a close eye on me.  although I have never had any scans done until just this week because I was complaining of pain.  I do have a chest xray done once a year but that is the only "test" that is routinely done.  wish I had demanded scans more often then maybe I wouldn't be sitting here today wondering if my cancer has returned.

SlayingTheBeast

Just wondering if you women are still going strong and recurrence free?? I finished my chemo in July and my radiation in September, so reading all of your posts is so encouraging!!

epgnyc

I was first diagnosed with TNBC in May 2002 and was treated with lumpectomy, chemo (8 rounds of CMF) and rads.  All was well.  Then in Feb. of this year, I was diagnosed with a 2nd primary TNBC in the same breast.  If you can imagine it, the tumor (much bigger this time at 4 cm.) was intertwined with the scar tissue from my earlier lumpectomy.  I was assured this is a new primary and not a recurrence of the first cancer.  This time I had a BMX (I'm not going for a third round with this demon disease!) and DD chemo 4xAC + 4xTaxol.  I'm 8 weeks out of treatment now and looking forward to getting my life back.

SlayingTheBeast

epgnyc- thanks for sharing with me! I am sorry to hear about your 2nd primary. I guess if you have to battle TNBC again, it is better to have a new primary than a recurrence- but seriously once is enough and I'm so sorry you've had to go through this BS twice now!! Have you been tested for the BRCA genes? I am so afraid of this spreading and coming back some where else. Some times I wonder if I should go back and get my breasts removed to prevent another B/C occurring later in life... How was your tumor found this both times?

epgnyc

Hi, Angelia.  I've been away so just saw your post from October.  To answer your question, the first time my tumor was found by a surgical oncologist.  I was in the process of getting a 2nd opinion on having only my ovaries removed for some suspected ovarian tumors or a full hysterectomy.  This was at Sloan-Kettering in NYC.  As a part of the exam the doctor performed a breast exam, even though it really had nothing to do with the other surgery.  I'd had a mammogram and ultrasound 7 months prior and received an all-OK.  So I ended up having my breast surgery (lumpectomy) before I had my ovaries removed.  Both did have tumors but they were benign, unlike my sister's, who'd had ovarian cancer 10 years earlier.  With the 2nd BC found this year, I had developed a pain in the lumpectomy breast and when I saw my breast surgeon 6 weeks later for our annual follow-up I pointed out my concerns and she agreed that while there was no lump that could be detected, the area felt a little different.  Turns out the pain was from the tumor pressing on the scar tissue.  I tell you, this is one wily disease. 

I'm glad you're doing well and there's no reason you shouldn't continue to do so. Good luck.

wrsmith2x

Four years out from date of diagnosis now.....had lumpectomy, Taxotere/Cytoxan for 4 rounds with 33 rads.  Was seeing onc every couple of months but then we went to six months and now we are at 1 year.  In fact I think I will only see him 1 more time and then I'm done!

Congrats to all who are out of treatment and heading toward the magic 5 year mark!

yellowdoglady

My three year from dx is next week.  I had a lumpectomy, 6 rounds of Cytoxin and Taxotere, then 35 rounds of radiation.  What a year that was.

But I was a 2cm, Stage II, Grade III, 4/14 nodes, and triple negative to boot.  Every year is a celebration.

Everyone should just know that the sky can clear and the sun can shine, and you can feel good and well again.  No need to be afraid to try, and no need to think you should run a marathon just after treatment either.

I guess I wasn't clear enough. It looks like I will live well and long.    

hoppytrigger

I am actually 8 years out and just was diagnosed with a new primary on the other side.  For the first time, Stage 2, Grade 3 I had a lumpectomy, chemo AC 5FU x 6 and rads x 33.  This time even though the tumor is smaller so far Stage 1, grade 3 but will confirm with surgery in a week.  Will have 4 rounds of chemo after a bmx on 11/29 since this one has lots of satellites one being too far away (they are stage 0 from what we can tell).  Not sure of rads yet.  Both times the are TNS.  Got tested for BRAC yesterday so I'll be curious to see what it says.

yellowdoglady

Hoppytrigger,

My hopes are with you.  Strong women can and do strong things.  Say what happens, okay?  No one should be alone in any of this.

brenda69

I am 6 years out, I had 4 rounds with the red devil (adramycin?) and the standard radiation, I think 34 doses and I am doing great!   Just scared of any pains!  I forgot to add a lunpectomy

yellowdoglady

The beautiful thing is that we don't all die, and most of us don't die, and now the vast majority of us don't die anymore.  That is better than our mothers or grandmothers heard.

When I was told, "Don't worry, breast cancer won't kill you for a very long time," that came from someone I loved and cared about who was totally ignorant but highly opinionated.  She probably still believes that bullshit because her Mom died 15 years after dx.  Trying to explain the different timeline for TNBC to someone like that is next to impossible.  They know it all, but nothing at the same time.

At least we have doctors who know what they are doing and don't talk about a different form of cancer in the 1950s when they talk to us.    

mybodymydecision

I am a triple negative and agree the diagnosis is scary.  I like hearing from people who are survivors years after the diagnosis.  I finally got my test back and do not have the BRCA first good news I have gotten.  The test took forever to get approved from insurance what a crock.  People have to worry about that for a month.  I was diagnosed in September have had two surgies now they say have to do a mastectomy and then chemo but more than likely no radiation.  I'm scared but the alternative is worse, I want to see my grandchildren born. 

yellowdoglady

mybodymydecision,

I get that you are incredibly frightened.  I told everybody that the thing I never wanted to hear again was, "Is anybody here with you today?  Well, sit down then."

Just between you and me and the wall, I was not approved for the PET/CT that my oncologist ordered to be done before I could start chemotherapy until five months later, and after I had finished chemotherapy.  I did it anyway, and started treatment.  And I fought for five months while I could hardly hold my head up but had to go to work anyway to get that approved.  It was.

If I had waited for approval, I would not have survived.  So, don't be shy about this stuff.

  

KiwiDiana

Hello fellow BC survivors,  I was diagnosed with DCIS grade 3, Trip Neg, in my right breast in October 2006. Surgery (quadrantectomy) and radiation followed and I MADE the 5 year mark with no problems!

But just three weeks ago I found a lump in my left breast, It turned out to be IDC, grade 1, 1cm.  Am recovering from SNB and Lumpectomy on the 19th December , and was to meet with my surgeon this morning to read the histoloy report.  He was called away on an emergency so I will meet with him later today.

After re-reading all this info I thought I could forget I wish I'd just taken the danged thing off now!

Fingers crossed for me please!

I'm looking up my bucket list.

karey

I will be four years post-surgery this month. My tumor was 3.5cm with no lymph node involvement. I had a lumpectomy and did four rounds of a/c and four rounds of taxol every two weeks. I had 33 rounds of radiation.

There were some microcalcifications detected in my other breast in December 2008 but those were benign.

I had a ruptured brain aneurysm and a stroke in December of 2009 so they keep a pretty close eye on me actually. At this point there has been no evidence of recurrence.

angelsaboveus

I  will also be 4 years out from dx in March ....wow feels good to say that !  I was dx with IDC grade 3 , 5 /12 positive nodes.    Had the mastectomy first in April, started chemo in May ...FEC x 3 + Taxotere x 3 then  had 15 rounds of  radiation and 5 boosts in Sept. That was quite a year.

Found out I was also BRCA1+ after waiting close to a year for resuts. So now armed with that info had ooph and now just finding the right time and frame of mind to also have a mastectomy on remaing breast as I hope not to travel that road again. 

suzette5956

Hi everyone. I'm triple neg. Had my mascectomy Dec 16th and don;t have my oncology appt till 8th Feb. Goodness nknows how long after that I will be starting my chemo. I'm assumong between 10 and 11 weeks. Seems a long time to me. What does everyone else think.

Luah

Suzette: That seems like a long time until your onc appointment, although presumably the chemo could get underway immediately following. Usually they like to wait at least 3 weeks (sometimes longer) before starting chemo to ensure you're all healed up and not subject to infection. At least 1 study has shown that chemo up to 12 weeks following surgery does not affect survival. However, TN is known to be aggressive. Do you have your path report now? Were the margins clear? Was your tumour grade 3? Any nodes involved? Signs of lymphovascular invasion? - these factors affect the aggressiveness, and may determine whether or not you should press for an earlier onc appointment.    

JoanQuilts

I am triple negative for the 2nd time!  I went 19 years without any trouble following my lumpectomy, rads and chemo (Stage 1, node negative).  Just recently diagnosed with a new primary and had a BMX and now will undergo Cytoxan-Taxotere x 4.  I am again triple negative.  My onco says my prognosis is negative (my tumor this time was half the size of the first time - 9 mm). 

I credit the sharp radiologist who saw a DCIS and a small nodule during my annual mammogram with saving my life.  Thank you Dr. Drossman.

suzette5956

Hi Luah. They took 11 nodes. All clear. Tumour 3.5 high grade infiltrating ductal carcinoma. Good clearance. Triple neg.