Triple Negative? Recurrence? What was your original treatment?

Your so right DebC and Sadie maybe you should ask what is the history of the ladies who beat this thing. That is the most important part.  Is it diet & exercise or natural healing?  If you don't have disease right now knowing other drugs will not help you.  The next drugs will change depending on the recurrence place. Hopefully if you should... it will be years out and they will know a lot more on our kind of bc.

Here is a example of my weird treatment history. 

DX 11/25/6   StageIIIc 7cm tumor spread to entire breast while taking dose dense ACT.  Right side radical mast. 27 nodes positive (was told 3 to 6 mths to live it was so aggressive) 33rads,  I found cancer left breast  and than a week later in the skin of right chest wall.  Cancel 2nd mast. Start 4 mths weekly of Gemzar & Avastan & carbop.  This did clear up skin but not other breast. Went to MD Anderson Houston drug trials no help. 6/1/7 2nd radical mast  24 nodes positive.  9/1/7 recurrence right side 3rd surgery.  Now waiting for Dec to run new test.  I do not have measurable disease.

I've had 51 nodes positive with no mets!  I never got really sick with chemo and worked through 27 tx in 16 months.  I have never met anyone like me.  I chose to do natural treatment along with chemo.  As you see we all are so different so do not put your hopes and fears into others treatment history.  Make sure your scanned regularly the first year. Push if you have to. I know this is hard...just get into the best health you ever been and you will be ready for anything.  Enjoy your life!

Living in hope

FlaLady

I am trip neg and had my first cancer 12 years ago. I had lumpectomy, radiation and my chemo was 5FU. This year's cancer was also trip neg in the other breast. This time I had bi-lateral mastectomy, tram flap recon, and my chemo was 4 dd of AC and 12 weekly of taxotere. I've now been done for about 1 1/2 months and am feeling pretty good. I've had my first series of scans and all are clear (except for the arthritis that my bonescan detected in my lower back and pelvic area). The arthritis lit up on my scan and I had been complaining of some pain. Upon further x-rays of the area, it was found to be arthritis. Kind of funny actually. Years ago during one of my bone scans, the technician said everything looked clear but he could tell me where I was going to have some arthritis later if I wanted to know. I laughed and told him no, I've got enough issues right now, Let that be a surprise.    SURPRISE!!!!!

My mamms were always clear. As a matter of fact, I had one in Oct 06 that was clear and in Jan 07 I found the lump. I also found my first lump at age 32. My sister found a t-shirt online that says "Feel your boobs" Breast Cancer Awareness. Very appropriate in my cases.

Sharon

Trip Neg, Stage I, No nodes (both times) 8/95 and 1/07 Invasive Ductal Carcinoma

I'm new to this site, but am now almost a year out from my original diagnosis.  I started out thinking they had found a tiny cancer that I would have a lumpectomy for.  Then after the lumpectomy I was triple negative and BRAC negative.  I had 4 rounds of AC and 4 rounds of Taxol.  Then I opted for bilateral mastectomies.  I am 6 weeks out from that surgery now.  Another nurse at the hospital I work at just got diagnosed and she's getting two new drugs, that are usually used to treat Pancreatic cancer, plus the AC and T.  Things just move so quickly, treatments change so fast....every one of us is different, but in the same boat.  We all want to be the ones that don't have a recurrence.  I struggle with living the healthiest life I can.  I've always struggled with my weight.   I'm one of the ones who gained 25 pounds during chemo....I am 47 and want to live a long, long healthy life....Here I thought it was going to be heart disease that got me....So I'm going to strive to lose the weight and live the best, healthiest, kindest life I can.

Em

Hi Sadie

  Alaska Deb is so right about statistics and the crap shoot we're all dealing with. My pathology back in 04 was triple neg, grade 3 and for extra measure metaplastic BC. I' ll bet you've never heard of it, and for good reason. It is a pretty rare variation which when I was first diagnosed I saw some pretty scary statistics in the studies. Well, I did my will, transfered property to my husband, got my affairs in order, and now, my biggest gripe is that Ive had 5 jaw surgeries and continuing pain after the infection that got into my jawbone when I did chemo back in 04/05. Doesnt mean Im outta the woods by any stretch, although I like to remind myself that with every month that goes by my odds get better  And to make me even happier there have been recent studies on metaplastic that seem to indicate that recurrences tend to be quick, so that the longer I go the better my chances. Unfortunately for all of us the statistics wont tell us what we want them to say, which is, that we'll make it. You never know where you'll fit in to the numbers, and for the first while if you're like me it'll drive you nuts. After a while though it will get easier, the worry probably wont ever completely go away, but you'll find yourself thinking about it less and less.

 For my 1st year, I read these boards every day, my second year was a couple of times a week, and now maybe once or twice a month....but I gotta admit I still read the studies and statistics on metaplastic

  If it helps btw, my tumor was left side, 3 cm's, grade 3, triple neg, metaplastic IDC with sarcomatous elements I had a lumpectomy, followed by 4 dose dense AC's, was suppose to do 4 Taxols as well but had an allergic reaction to the AC and ended up on significant prednisone and couldnt do the T's, and followed it up with rads including a boost.

I haven't posted for some time.  My ex-wife recently completed her radiation treatment after a partial mastectomy.  She is a triple -negative and the cancer was very advanced when she was diagnosed, although I don't believe she was actually told her staging. I'm assuming it was stage 3, given the size of the original tumor. She was given Taxol and tumor shrinkage was very pronounced. I hoped she would have chosen a radical mastectomy, but she did not. Recently, she has been complaining of pn and off headaches in the front part of her head and I wonder whether this could be mets to the brain? Her next appointment is December 6 and I have asked her to definitely mention her headaches to the doctor.  What do you ladies think? Should she talk to the doctor before then?  thank you.

My situation was kind of weird, so I'm not sure it will help you much, but I'm up for sharing!

My first tumor was dx around Labor Day 2005. It was big and growing fast (and I was scared for some reason of the radiation required for lumpectomy), so I opted for a mastectomy.

It turned out to be a 4.5cm medullary tumor, a rare variety of triple negative. Stage 2, grade 3, negative sentinal nodes. I had four dose-dense ACs, followed by four dose-dense Taxols.

In April 2007, a routine mammogram found a small tumor in my other breast. The second tumor was triple-negative, too, but IDC. So it definitely didn't travel from one breast to the other. At that point, I figured my breast tissue must be prone to cancer so I had another mastectomy. 

One of the nurses asked me if I regretted not getting a double mastectomy in 2005, but I don't. Medullary tumors rarely travel and I made the right decision in 2005 with the information I had. My chemo this go-round was 12 weekly doses of Taxol and Carboplatin.

Not another member of my family has ever had any type of cancer. For us, it's heart disease. Imagine my surprise! (Even though I *knew* 80 percent of the women who get breast cancer have no family history for it.)

I think the hardest part of this journey is coming to grips with the fact that you can't control your destiny. You have to learn to deal with life's uncertainties. For what it's worth, I had a much easier time with my second tumor than my first. I knew more about what to expect and how to cope.

I wouldn't wish a second tumor on anyone, but if you've done it once, you can do it again. It sucks but you get through it fine.

--CindyMN

babyface:

It's been about a week or more since her last radiation treatment.  She said she has been having the headaches on and off for some time, however.  It's difficult to say what may be  a side effect of the treatment or the underlying condition.  She is 46 years -old and had a hysterectomy two months before her lump was discovered.  I suppose I could encourage her to set up an earlier appointment, but I don't want to alarm her either.

Sadie,

I had a conversation with my 10-year old son about my chemo tonight (I just started T after 4 dosages of AC as you know) and he said "I just hope that it doesn't come back, mama". I said I hope so, too. But then he hasted to add: "But if it comes back, it won't be as bad, because we'll know what we have to do". And then he comes close to me, gives me a hug and said: "I'm trying to give you courage, mama". Maybe he is right. Since I've lost the innocence of "I'm not at high risk, I'm thin (125 lbs), I exercise, I eat relatively healthy, no family history of BC", nothing can surprise me anymore but I hope I won't have to go through this again but if I do, I hope I have the courage and the positive perspective I managed to develop for the first time thus far.

Hello again everyone;  Ocinny, I loved that you said you can say it now without getting tearyeyed, that's true, me too. So I guess through all the chemo, pain and complaining I've adjusted so much more than I realized.  I do still have a few meltdowns usually over forgetting things, tripping, today while talking to my sister on the phone I knocked a full glass of water into my purse, yup this time though I didn't lose it, looks like I can throw away the grumpy pills. But reading about all the reacurrances and talking to women  with it at my cancer clinic it does make you think.  But if you think to much it can make one nuts.  Fine line to walk, but I've learned so much from this site and my onco is going to get soooo many questions and requests for scans.  I want grandchildren and want to be hear when they're finally born.