Calling on all triple negatives w/ local recurrence

dx 7/10/12, TN, stage III, grade 3.  lymph involement. neoadjuvant dd AC & T. Bad reaction to taxol first time (#4 treatment),switched to taxotere #5-8. bmx 12/2012, with te's. 30 rads, finished 3/22/13. appeared to have CPR from chemo. 

followup app with RO 5/7/13. everything good. that very night (yes only 10 hrs later) pea size lump appears on breast. removed and biopsied 5/9, got news it was cancerous on 5/14. having PET scan tomorrow, 5/17, MO app monday. dont know specs yet, but assuming its same cancer. I'm so very scared right now, new to this site, and trying to stay positive. it now feels like another lump is coming up.  btw, Jan 2012, totally clear mammo, woke up july 1 with right breast swollen. thats how I found it, literally over night. recurrance only 10 mo's from initial dx

Diagnosed with stage II IDC - TNBC, grade 3 (Nottingham score=9) on Jun 29, 2012 at 56 years old. Found lump myself. Underwent 8 treatments of dose-dense biweekly neoadjuvant chemo (4 rounds A-C, followed by 4 rounds T). Lumpectomy on Dec 6th - SNB clear as were all margins. Underwent 6.5 weeks of radiation in Jan and Feb. In late March (1 month after finishing radiation) I found lump near original tumor site. Biopsy revealed lump was actually fat necrosis resulting from radiation but adjacent to it was the same cancer. No one can tell me definitively whether this is an actual recurrence or residual; however MRI taken just prior to surgery showed only the original tumor (not this second cluster) that had shrunk by two-thirds but didn't have a complete pathological response (those that do have a better prognosis) and surgeon took a "generous" cut during lumpectomy. So surgeon is thinking recurrence. 

Had second bone and CT scans performed - CT done at different organization found a 9mm lung nodule in right lung (same side as cancer) that didn't appear in first one done in July 2012. Hoping it is benign - too small and in bad spot to biopsy so now must wait and see if it grows larger. Mastectomy done on 4/25/13 showed a cluster of small tumors (largest was 9mm) adjacent to the area left from the lumpectomy (so I personally am going to believe it was residual and was just too small at the time of the MRI in November to have been detected AND somehow survived the chemo and radiation!). SNB proved negative for cancer.

Because the largest of the clustered tumors was nearly 1 cm and the fact that my cancer type is TNBC and can't be sure whether it is a recurrence or residual, my oncologist is recommending further chemo. I will undergo 4 biweekly treatments (possibly 6) of gemcitabine & carboplatin. Has anyone had this treatment and if so, how did you feel? Were you able to work? I was out on short-term disability the first time, but would like to avoid that this time if possible. 

I decided to take my doctor's recommendation as he stated 1 in 4 women risk a recurrence (local or distant) and most of what I've read about TNBC is that the risk is more like 35%. I want to do all I can to prevent a recurrence or metastasis. I am going to be agressive with my exercise and eating routine as well - just bought the two cookbooks written by Rebecca Katz that were recommended by Jennifer Griffin for those getting chemo treatments. 

I was tested for BRCA1 & 2 and am negative. 

Would love to hear if anyone else had such a short turnaround time between cancer diagnoses. Thanks.

YEARS FROM FIRST DIAGNOSIS:    First diagnosis 10/3/2011 

TREATMENT GIVEN:  First treatment  - excisional biopsy without clean margins, T/FAC Nov 2011 through 4-2012, Relumpectomy 5/18/2012 (lump site and SNB both clear), Rads July and August, 2012.  Clean CT scans 12/1/2012.  Recurrence was within 5 months of finishing treatment. Found new lump on 1/31/2013.

WHAT DID YOUR DOCTOR EXPLAIN? RO is the doctor that ordered the second biopsy.  The new lump was on the incision line from the lumpectomy.  There were also cancer cells in one node biopsied.  He seemed pretty shocked and walked me up to the surgeon who had done my lumpectomy.  RO, surgeon and MO all wanted mastectomy done prior to additional chemotherapy.  (I think there is a study that supports this for recurrences.) 

MO (after I ticked him off by asking to see a TNBC specialist) went to their committee came back with a recommendation of Ixempra/Xeloda.  (he might have gone to committee anyway, but he sure didn't tell me that up front.)  Thinking is that since it was back so fast, it was not all gone, no matter what scans said.  Ixempra/Xeloda combo is generally used in stage IV cases.  Since mine was back in breast and axillary node, it is a local recurrence, but they want to use the IX/X for anything not showing on scans yet.

I asked about gemzar/carboplatin and he said that more studies show success with IX/X than studies with gemzar/carbo.  (I think it's all a crapshoot!)  My guess is that if this doesn't work, they will try the gemzr/carbo.

BRCA - Negative

FOLLOW UP NOW:  Had rt mastectomy on 3/19/13 with ALND that took all level one and level two nodes.  Took 46 nodes, one was positive.  Cancer had exfiltrated that node.

Started Ixempra/Xeloda on 4/23/13.  6 rounds on a 3 week cycle.  Will do CT scans after every third round.

Rads to level 3 axillary nodes after chemo.

This thing is a beast.  I was so ticked off that mine was back so soon, but I'm now finding out that at least I had 5 months to recover from treatment before starting again.  Some of you have not even had that. 

One of the problems with less time to recover is that our bone marrow is not up to speed in that short a period of time.  This combo is kicking my counts down, way down.  I had to take this week off of Xeloda because counts were too low.  I had 2 neupogen shots after the first round that brought them back up.  This round, my counts tanked the first week.  I had 2 neupogen shots last week and today will find out if I can finish out the week of Xeloda.  Then I am supposed to start round 3 on June 4. 

edited to add:  59 yrs old at first diagnosis, 60 at recurrence.  Now 61 yrs old.

I was wondering how everyone's treatment is going. I finished my 1st 2 weeks on of xeloda, had some minor foot pain in toes and ball of feet, almost swollen feeling, but not severe. Some mild nausea 1-2 hrs after taking pills, but that passed quickly. I'm just feeling tired. I'm on my off week, start round 2 on friday. 

I dont see my mo until the 19th, and I'll have many questions for her. does anyone know how often scans are done, either PET or CT?  I fluctuate from feeling doomed to not thinking about it. I really haven't felt hopefull at all. How are all of you doing emotionally? I've always considered myself strong, but I think this may be just a litttle more than I can stand.

Stressmagnet - how are you feeling on the xeloda and how can you tell if its working?  I've read it works for only a few months, however I also see some are on it for years. I'm on monotherapy,1800 in am and 1650 in pm. I see you've had radiation 2x. different sites?  regular radiation machine, cyberknife, or proton therapy? and why were you given herceptin if you are tn? Excuse my questions as I am relatively new to this and I would like to have as much knowledge as possible. I see onc on wed and need to prepare some questions. The thought of being on chemo the rest of my life seems daunting, I'm so tired sometimes.

Kathy: Good you're posting here too, but please don't hesitate to post in the Calling all TNs thread. I think we all know how devastating this disease can be, and it's good to learn from others.  I hope you get some good recommendations from SK -- and from a TN specialist if possible. If it's a new Dx (and to me that seems unlikely, but I'm not a doc), maybe the same or similar chemo would work. If it was lingering from before, then it would seem to make more sense to try something new.

Now, please forgive me for being frank or meddling, but something else....  I know you've had honest and difficult talks with your docs about your prognosis (and kudos for you for doing so), and you're right everyone is different, but it could be (could it not?) that surgery has done its job of removing the cancerous nodes which is good (the nodes are there to filter the bad stuff)... and no one knows whether it has spread elsewhere or not at this point, let's hope not... I'm not trying to sugar-coat anything but docs like to look at risk and odds, and my feeling is, that bottom line, each of us has either 100% or 0% odds of beating this.  

Also, although neoadjuvent chemo has a lot of benefit, it does give you information that the rest of us are completely ignorant of, and may in fact, end up being irrelevant to our survival. (I had cancer in my nodes, and did surgery on levels 1 & 2 first, so I really have no idea whether chemo did anything at all.)  

Kathy, I too am hesitant to reveal all on the other threads so as to not cause unnecessary fear to others, but I know how aggressive my bc is and I think this thread or the stage IV thread is where we can be brutally honest. Even though I'm told it's not stage IV, it still is metastases to skin atleast, and I have strong suspicions its in nodes as well since i have some soreness and discomfort. My Pet done 1 wk after tumor excision revealed only slight uptake where tumor had been, but lo and behold, 4 days later 2 more tumors popped up, and now another also. So, has it gone to visceral organs? idk, and I don't know how often I will be scanned. Thank you for your comments about my frustration with the np. I see you had a similar experience. If they had told me upfront that I wouldn't be seeing the mo, I wouldn't have been so disappointed.

I personally think chemo is the way to go with aggressive tnbc, even if it is for management and not cure. I responded really well to AC and since I have only had 1/2 of lifetime dose, it's still an option. I'm on xeloda to give my system a more controlled level dose since my recurrence is so recent, but Idk how long i'll be on it. I will see np in 2 wks for more measurements and blood work, then mo the following week.

I had my first tumor marker test at my original mo followup before recurrence -ca 27-29 (?), but never got the results. Current mo did a ca 15 -3 , value of 21. I understand that a rising level indicates spread, but a low level indicates nothing since not all bc's shed these types of cells.

Xeloda seems to have halted growth of my 3 tumors, but I haven't noticed regression (just basing this on how big the lumps feel). I'm on 2nd wk of round 2, getting foot pain, (not like neuropathy, but actual pain like walking on glass) but its tolerable. first round, pain resolved on off week. So , if its working, I'll continue on it until we decide if more surgery, chemo , or targeted radiation are options.

Kathy, please pm me if you have more specific questiions, or if you just want to vent with someone who also thinks hers prognosis is not good. 

YEARS FROM FIRST DIAGNOSIS?  I was first diagnosed when I was 30 years old, on 9/6/2011 with stage IIa IDC, grade II/III.  I received my last chemo treatment on 2/6/2012 and had a breast MRI (before having my mastectomy) two weeks later.  The MRI was negative and my Onco said I had a pCR (pathologic complete response) to the the chemo.  In January 2013, I found a small bump on the same breast where the cancer was originally.  The onco thought it was a calcium deposit but I requested a MRI to be sure.  The MRI was negative so the onco measured my bump and said come back in 4 months.  I returned in May and my bump had grown from 10mm to 15mm.  It looked like a mosquito bite or like scar tissue.  My onco called my surgeon and we scheduled a biopsy. 

The biopsy was positive.  The strange thing is it was in the skin, which explains why it did not show on the MRI.  I had my first of 33 treatments of radiation today and I am wondering what will happen next.  My onco said he was going to do more research on TNBC recurrance treatment to determine the best route and whether or not chemo will be a part of my treatment. 

I'm concerned that it came back so quickly.  Also, I find it odd that in was in my skin.  Has anyone else had a recurrance in the skin that wasn't inflammatory?

TREATMENT  GIVEN ?  Dose Dense ACT followed by bilateral mastectomy with reconstruction.  Currently receiveing radiation (33 treatments) for the recurrance.

WHAT DID YOUR DOC EXPLAIN ABOUT TREATMENT AND %/ STATISTICS ?  Following the the chemo, he said I had about a 33% of recurrance.

BRAC + OR -  ?  BRAC-

Thanks Kathy.  I've done my share of research and I agree....the data just isn't there.  I'm leaning towards chemo and my MO has not ruled it out.  I think he thinks I'm not ready to hear it yet, which may be true.  Who knows.  I've since had a 20 minute conversation with my MO discussing research or lack thereof in great detail.  I've reacted to this recurrance so differant than I did my first dx.  Before, I think I just went numb.  Now I know too much and I'm mad at my body for letting this happen again.  It just sucks.  Thanks for suggesting the other thread.  I'll check it out.   

Thanks Phyllis.  In my last meeting with my MO, he said he was going to do some research and reach out to other MO's outside our hospital that have had more hands on research projects on TNBC.  I meet with him again in two weeks to review his findings.  I'll post his recommendations.

Ooops, forgot your second question Phyllis. My MO is on vacation, I'll see her next week. Starting will be delayed because I'm going to change to a local facility to receive the treatment. Don't know how long it will take to get into place.

I was 46 when diagnosed in 2007 stage 1, grade 3  triple neg, had left masectomy, 8 rounds of chemo neg sent node. At 3rd year follow up was told no longer needed follow up unless unusual symptom. Noted feeling of fullness in left axillary, Attempted to see MO, he had left the area, was not able to see surgeon without referral, went to PCP, he felt like it was nothing to worry about " fat redispotion from scar tissue" of course that is what I wanted to hear! 3,  months later was diagnosed pnuenomia chest ct showed enlarged lymph nodes, biopsy showed bc back. Now it gets cloudy, was told first recurrance, had node disection, 4/18 pos. was also in muscle and surrounding tissue.  So is this recurrance or mets? My actual diagnosis is Mets. Was told they don't stage mets?? Also told 80% chance of mets further. Currently doing radiation---9---left out of 33, and chemo. Our Goal is to keep cancer cells at bay as long as possible. But my MO also states we are not treating pallatively, but for a cure. I get confused. mixed messages. Does anyone else get this confused???

Slow – I have a friend and her last name is so hard to pronounce but it starts with Slow and that’s her nickname.  I hope it’s ok that I do the same for you.  Thank you for sharing your story with me.  I had my biopsy on 6/17 and a PET on 6/21.  The PET showed no abnormalities.  I had a MRI back in January when this sucker appeared and it was also negative.  So I asked my MO… if this cancer did not show on the MRI due to it being more of a flat mass in the skin, would it have shown up on a PET?  He said probably not.  This bothered me.  We have discussed chemo briefly but he said he’s not sure which to use or to go the route of chemo, although I think he’s already decided chemo is necessary.  My met was around the 8 o’clock position on the breast mound, far away from my incisions.  Last night I started really looking at my incision scars under my breasts and either I’m completely paranoid or my left scar looks different from my right (BC was only on the left).   I see the RO tomorrow and will ask him.  It may just be that I’m thinking about my situation WAY too much but I’m a research/fact hog.  I feel better the more knowledge I have.  ((Hugs))