Triple Negative a Second Time

epgnyc · February 2011

Three weeks ago I was diagnosed with triple negative breast cancer for the second time. What a nightmare! I was dianosed with my first triple neg. b.c. in May 2002 (1.7 cm.) and was treated with lumpectomy, chemo and radiation. I was going to celebrate my 10th anniversary next year. :-( Not only have I been diagnosed with b.c. again but it's in the same breast and is once again trip. neg. Has anyone ever heard of this? I am being treated at Memorial Sloan-Kettering in NYC, so I know my doctors are the best and they are telling me it is unheard of to get a recurrence of the same trip. neg. cancer more than 5 years out, so this must be an entirely new trip. neg. b.c. even though it's in exactly the same spot as the first time. Hmmm. Next week I am undergoing a bi-lateral mastectomy (having b.c. twice is more than enough for me) and will be undergoing aggressive chemo (tumor is 2.2 cm) afterwards. I am curious if anyone has heard of or experienced a second trip. neg. b.c. It's deja vu all over again....

Luah · February 2011

Sorry to hear about your diagnosis. It sucks to have cancer once, let alone twice. I do know that it is extremely rare to have a trip neg recurrence after 6 years (although not impossible), so it seems more likely that it is a new primary. Good luck with your treatment.

LRM216 · February 2011

It's always such a downer when you seem to beat the odds and then this happens all over again. I am so very sorry you have to go through this all over again. It scares the bejeesus out of me when I hear of stories such as yours - just goes to show that this beast follows no rules whatsoever and does what it wants to. Once diagnosed - not a one of us is ever safe from it again, especially this dang triple neg. I want to wish you nothing but the best and to let you know we are all here for you - 24/7. If you haven't joined the "calling all TNs" thread in this forum, please do. That's where we all hang out and hold each other's hand - through good and bad.

Hugs,

Linda

mrsnjband · February 2011

So sorry to hear you had 3neg a second time. I had ibc, 3neg but didn't know about the 3neg, doctor didn't refer to that way. I figured it out when another teacher at my school has 3neg. What are the odds of that? I don't blame you for the BMX. I chose that because of the rate of reooccurance to the other side.

Sending love & support your way! NJ

Fighter_34 · February 2011

This is new to me. Sorry to hear this. Like said before I don't blame you for BMX. Be as agressive as you need to be.

sjstrader · March 2011

I had a recurrence of triple=negative just last July, on my 5 years later checkup. LIke you, same breast, same triple=negative. I didn't know it was unusual until I read your post. I was not given any treatment other than a mastectomy...wish I had gotten a bi-lateral now. They didn't give me a choice and of course I was "way out there" at the time. Hope all is well for you. My only treatment is seeing my breast surgeon for my mammograms and my onc for follow ups.

Chicklitzz · April 2011

So sorry to hear that. Cancer sucks!!! I was and am devastated to be in the same boat.

In March, Mine came back 2.5 cm triple negative in the same spot after 4 years.

What are the odds, really? I had a bilateral mastectomy and am now

on chemo with expanders placed. All the mammograms were deceptively

occult. A breast mri finally found the tumor. The tumor was mammo-graphically

occult. So girls ...don't trust your mammogram 100%. Breast mri's are best in my

opinion. I wish someone had told me that. Who knows how long the tumor would

have been in there if i had not asked for an mri. Be strong and remember to

love yourself, you can do this. Sending prayers you way.

bailiej · April 2011

Hi there,

I too have triple negative for the second time - a new primary after my first 2 years ago. I am angry because I wanted an precautionary mastectomy on my remaining brerast and kept getting put off by the doctors. Now I have it again. They could not find it on a mammogram or and MRI even after knowing smething was likely there. I only found it because it made it to my lymph nodes again. Since they gave me such agreesive treatment the first time they are a bit unsure what to do this time.

tibet · April 2011

hi Chickliz

sorry to hear about your second dx. I think for dense breast, mamo isn't that useful, but Ultra S.

Did you get chemo the first time? Did the dr say it is a recurrence or a new primary?

tibet · April 2011

hi Chicklitzz

so sorry to hear about your 2rd dx. Did you have a mastectomy the first time? Did the dr say the 2rd would have been avoided if it were mastectomized the first time?

If it is a recurrence in the same spot, then it would be assume considered as a local recurrence. Right?

Bethesda · April 2011

So sorry you are going through this. I was diagnosed with 3X in 2001 and had a lumpectomy followed by concurrent chemo and radiation. I thought I was "home free" and considered myself cured! Wrong. In 2007 it was back and in the exact same place! I asked for a bilat mastecomy but my doctor advised me that this was far too radical. I'm sure the advice was intended to help but I am truly sorry I didn't make a better choice for my mental health.

I am convinced that I would not have had a recurrence if I'd had a mastectomy in 2001 and now I'm equally convinced that I should have had a bilat mastecomy rather than fearing the worse each time I have a mamography (that missed my first 3X and my insurance won't cover a MRI). At this point, regrets are useless but I hope this will alert others to get second and third opinions.

I

Bethesda · April 2011

Did any of you have "calcium deposits" identified in your mammography reports prior to the triple negative diagnosis?

tibet · April 2011

hi Bethesda

I had micro calcification in Mamo and did biopsy which found only DCIS but at mastectomy they found within the DCIS a 1 cm TN tumor. I had bilateral mast and reconstruction and am happy with the reconstructed results.

It is kind unususal to have a recurrence after 6 yrs for TN. Maybe your second dx was a new primary? At least, now even the second dx was 4 yrs ago so you are doing good. Was your first and second both triple negative? What were your treatments and size of the tumor and nodes status?

bak94 · May 2011

This is also my second triple neg, but in the opposite breast. am having bmx very soon and then chemo, again and rads. I only had lumpectomy, chemo and rads the first time. So, what chemo's are they suggesting for all of you with this the second time around? First time I had 4 ac and 4 taxol. My onc. is saying ac again, but delivered over a 24 hour period in the hospital every 2 weeks 6 treatments and then abraxane/carbo after that. I worry about the ac a second time, but he reassured me that I have not hit my lifetime limit, he has all my records from 8 years ago. The first opinion I got was to start with weekly abraxane for 12 weeks, that didn;t seem aggressive enough to me, but the second opinion seems a bit too aggressive! I don't know what to do! I tolerated chemo very well the first time, even the ac. Oh, I did have calcifications and then a cluster showed up and that is how they found the tumor, the tumor did not show up on mamma, the ultrasound picked it up.

tibet · May 2011

Bki66

I heard if you had ac a Long Time ago it Gould Be ok to use it again.

What was your Tumor Size and Node Status First Time and this Time? I think carboplantin is very effective for Triple eng.

TiffanyF4 · May 2011

I went to my 2nd opinion because my gut feeling was to have a Bi-Lateral Mastectomy. The surgeon kept giving me all these statistic saying a lumpectomy would be just as effective. In my opinion that is just not true. My 2nd opinion Surgeon told me every possible option and then looked at me and said "so what do YOU want to do" I liked that!

bak94 · May 2011

Tiffany, did you have genetic testing? That could help with your decision. I tested positive for brca 1. Wish I would have had the testing with my first diagnoses, as then I would have had bmx back then. Now I am going to, as I had lumpectomy chemo radiation the first time. There is nothing wrong with my lumpectomy side right now, my new tumor was in the opposited breast, but now they such removing both because of the brca.

newalex, I had a 3.4 cm tumor and 2 micro positives node. This time I haven't had surgery yet, so I am not sure. The tumor seems to be smaller, but I do have positive internal mammary nodes-yuck found on the mri.

epgnyc · May 2011

Thanks for all the great responses. From what a number of you posted, it doesn't seem to be all that rare to get a local recurrence of TN in the same breast after all. Mine wasn't picked up with manual examinations by my surgeon or mammograms because the tumor was all entwined with the scar tissue from the first surgery, and thus the tumor got much larger than it was the first time. I too think that MRI's are very helpful but unfortunately only had mine after they'd already found the 2nd tumor. I think if I'd had a mastectomy the first occurrance of breast cancer, I wouldn't have gotten the 2nd tumor, which is pretty much why I decided to do a bi-lateral. And I'm really glad I did it.

Fighter_34 · May 2011

This is just my opinion. I hope I can express it.

A DMX is not as bad as you think. I feel great and my Tissue Expander HOOTERS look great. I have on a low cut blouse today and I look great. I am still getting HIT ON. Now the sexual part I am experiencing a lot of feeling on the top part of my breast area. Use your imagination in the sex department. Your fellow can still kiss all around your breast area and you will feel it.

Bethesda- yes I did have calcium deposits...prior to my dx.

Epgnyc- Hugs. Once agian I am sorry you have to do this all over again. You will get through this.

sharalou · May 2011

Don't wanta sound stupid, but is triple negative is when all three-er,pr, and her2 are all negative? is there such thing of triple positive?

Babs37 · May 2011

sharalou- triple positive is when er,pr and her2 are all positive.

helperro1 · May 2011

Hi Ladies,

I was 34 when first diagnosed with TN, Stage 2. Had Lumpectomy, chemo A/C, Taxol and Rads.

11yrs later I am faced with a second TN on the opposite breast. I have always had mixed feelings about Mastectomies, because they can not get all the tissue out and if it reoccurs and now it is on your chest wall or worse mets. However, I am BRCA1 and do not want to go through with this a third time. So I am scheduled for a BMX on June 15th with reconstruction, Chemo, and possibly rads depending on the node results. I have been on this site for quite some hours today, and am now very concerned about doing a BMX as there as been way too many reoccurences with women who have had BMX . Maybe it is decieving because this is a site for support but it seems to me, the quoted chances of it reoccuring after a BMX of 2- 3 % is bullshit and a lot higher than that from what I am seeing on this site today.

I am just so sick to my stomach and very pissed off that with all the years of research and studies, the medical field still don't know a whole lot. Yes, we live longer, between occurences, but really I want it cured! My sister died at the age of 34 from breast cancer and even though I have lived longer with it than she did, I still fear the same outcome in time.

Sorry to be such a bummer, I had been looking at things very positively, but I feel so defeated today.

bak94 · May 2011

helperro1, So sorry to hear about your sister, it is a very scary disease. I still think bmx is the best way to go, drasticly reducing a chance for new primary or reocurrence, but unfortunately not a quarantee. I wonder if I had done bmx the first time if I woould have wound up with a new primary this time. My new lump is deep in the breast, so if they had missed any tissue at all, I could have still had a new primary anyways. I am not a candidate for lumpectomy this time and with my positive brca 1 I am having both taken away, and I do wish I would have done it the first time, but I just wasn't ready back then, I am ready now! I am doing chemo first, then surgery then rads, then reconstruction 6 months after rads(DIEP).

epgnyc · May 2011

I feel so badly, helperro1, that you are faced with this devil a 2nd time. Not fair! I had my 2nd occurrence 9 years after the first but in the same breast as initially. I had my BMX on March 7th and am very happy I had it done. Certainly you're right that there is no 100% guarantee that even with a BMX there can't be a recurrence but the chances are very slight. I felt that was a much better bargain than the odds of getting it a 3rd time and having to undergo chemo and all that fun stuff again. It's just so overwhelming for you right now and you deserve to have your "down days" -- we all do. Hope everything goes really well with your BXM. We're in your corner!

helperro1 · June 2011

Thanks guys, I agree, maybe I should have had the BMX with the first go round, but like you I was not ready and I am not going to look back now.. Just move forward!

tibet · June 2011

i heard a mastectomy reduces the recurrence in the same breast. It is not a 100 percent but it doesn't mean they don't get 100 percent of your brest tissue out. They may get 100 percent in you but less than 100 percent in others. Who knows. Its just they cannot promise 100 percent all tissue out in every woman.

suelynn · June 2011

TN does not follow rules (or cancer in general, i'm guessing)... my mom's came back after 6yrs to sternum. We had put it outta mind and started to move on ... then boom/crash, we're back on this journey! sucks! sucks! sucks!

redgrldj · June 2011

I had a BMX in May of 2008..in Nov 2010 I had a reaccurance in my lungs... Same TN BC.... it kinda sucks...

katfinn · June 2011

Wow! I can't believe how many of you are experiencing recurrances (and in the same breast and same kind of BC). I'm praying that you all are able to fight this thing once again!

Here is my question...Can you have the reconstruction after having radiation? (maybe after several years?) I am finishing up my 4th and final chemo treatment (only C/T - wondering if I should have gone with the ACT) soon (triple negative - stage 1 - no nodes but grade 3). I just had a lumpectomy (they didn't think it was triple negative at that time but just ER and PR negative). I had to have the FISH test done on the tumor to decide that the HER2 was negative. The surgeon said that a mastectomy would not raise my odds against recurrance at all but I am now wondering if I should go back and have the mastectomy (or even remove both).

I am concerned that if it comes back, I may not be able to have reconstruction (expanders) as I hear that the radiation makes your skin less elestic. I'm almost 53 so my doc says that the triple negative status is not all that more significant than an other breast cancer when it comes to recurrance.. but...????

And advice for me?

bak94 · June 2011

I talked with a surgeon and if all goes well I am doing delayed reconstruction, his thought is that it has to be diep in my situation. I had lumpectomy with rads the first time and this time I am have bmx, with rads to the new cancer side, so both sides will have been radiated by the time I do reconstruction,. He did not suggest implants for me and definitly not tissue expanders before radiation on my new cancer side. He said there can be too many complications. Now, this is only one surgeons opinion, and I think others have successfully done te's before radiation and have been fine. My surgeon was even worried about te's on the side that had been radiated 8 years ago. I am going to get another opinion, maybe 2 other opinions, but I have a bit of time as I am doing chemo first. In my case it was not a recurrence, but a new primary in the opposite breast, so maybe my answer doesn't help you! My lumpectomy side is fine and has been for over 8 years, but I tested positive for brca1 so the suggestion was to have both removed.

katfinn · June 2011

Thanks bkj66. This of course does make me wonder if our breasts are just predisposed to getting this thing or if it actually travels from one to the other over time. I just pray that it doesn't travel anywhere else. I wish I could find some statistics on the percentage of recurrances when women don't have bilateral mastectomies. It sure seems like a lot of you are getting recurrances here. But my doc keeps telling me that all the women who don't have recurrances, wouldn't be on here because they are doing fine and have no need to be going on this site (very true, I doubt I'd need it if I was cancer free). Hmmmm????

Good luck to you. Can you tell me how you discovered this new primary? Do you have very dense breasts? Also can you tell me what stage and grade your first cancer was in the other breast? I'm guessing you had low numbers if they did not give you chemo the first time. Thanks!

Triple Negative a Second Time

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