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Triple Negative

Hennie
Posts: 11
Joined: Jul 2012

Hi, I've just joined this wonderful group. I was diagnosed w/triple negative breast cancer on 3/2011. I completed my chemotherapy in 12/2011. Luckily I didn't have the nausea or vomitting many do. Main problems were leg pains which linger today, however, not close to how they were. I had my radiation done in the month of Feb - March this year. In mid April I had my CT Scans and all came out negative. I'd say about 5 days ago I began feeling like pin needle pricks in the middle of my chest. So bout 3 days ago I've been having some pain on my right breast which is where I did have a lumpectomy. Oh it is so tender to the touch at this time and feel a lump. This type of cancer is aggressive and studies show survival is aboout 5 years. Would like to know if any of you pink sisters are experiencing this Triple Negative Breast Cancer and how you are doing? I'm trying to stay positive cause I've got 3 grand babies whom I do want to enjoy more of. My onco appt isn't until the 12th and wow seems like eternity at this time.

Hennie

MAJW
Posts: 2515
Joined: May 2009

You are not a statistic! Please if you got that from the internet, please stop reading things...there is so much false information, and a lot of it is very old information...and it can scare the crap out of you! One of the first things my surgeon and oncologist told me was just that...stay off the Internet!!

There are more than a few of us on this board with TNBC...I won't go into the details of my journey, it's a long story...but right now I am holding my own, and doing very well... Great tumor marker numbers...

We have no control over getting bc and no control if it returns... Please don't consider yourself a statistic...
I hate the reason that you found us but I'm so glad you did...the women here are fabulous! I've been here for 3 years...We're all different even though we may have the same kind of bc and everyone's journey is different...please continue to post..I'm sure others will chime in...Ask us anything, vent if need be.....

Hugs, Nancy

MAJW
Posts: 2515
Joined: May 2009

Bumping this up..

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Hennie, I am not triple negative, but, wanted to welcome you to this great site full of supportive pink sisters and to wish you good luck.

Hugs, Debby

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

Welcome! I take a different approach to internet information. I trust only what comes from the American Cancer Society and the Tripple Negative Breast Cancer foundation. I have done a lot of research and here is what I know.

You said you were a grandma. That is good news. The older you are when you get TNBC the better your chances of survival. You talked about a 5 year survival rate. The info I have is that if you do not get TNBC back in 3 years you probably will not get it back. 5 years is past the point of danger for many of us.

If your blood pressure is not under control you may want to ask your oncologist about the beta blocker Propranolol. Propranolol is the older blood pressure medicine and has been shown to inhibit metastasizing of TNBC. I got on it right away as my BP was not under the best control.

More in next post

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

I eliminated as much stress from my life as possible once I got bc. I happen to beleive that my bc was caused by stress. This may or may not be true. However, if my life was going to be truncated by TNBC then it was going to have as little stress as possible. I have a Master's degree in my chosen proffession. However, that profession led to a lot of stress in the form of deadlines, political correctness, and a lot of un-necessary bull-malarky. So now I work as a paraprofessional in the same feild and am much happier. Sure it is a sacrifice but I only made 1 or 2 dollars more an hour than I did at my paraprofessional job I held through all the years of my college education. So if there is stress that you can eliminate, give it the hatchet.

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

Hennie, I'm sorry you are in a position that brings you to this site but you're among the best group of people to converse with. There are so many wonderful and wise bc survivors here!

I too, was a triple negative - invasive ductal bc. I started chemo last August and completed radiation in March. I have been having pretty annoying neuropathy in my limbs, particularly my rt hand. I've actually experienced some on my face. I also have a very tender rt breast since radiation. It feels like it did prior to getting my period those many years ago. I've had a mammo that was clear and I recently saw my rad. onc. and she found nothing. I'm seeing my med. onc. next week and we definitely are going to look into this. So you're not alone with this. Worries are with us but hopefully, as many of our friends here will say - these worries will decrease. I found alot of the internet has terrorized me - there's so much doomsday info on TNBC. You've got to filter out the crap to protect yourself. The American Cancer Society and the TNBC foundation were pretty good at stabilizing that terror. I'ma also a grandma (my first was born in May) and I'm planning on seeing him get married, along with the ones to follow.

Just stick with us here - we're all in this together!

All in all - I'm doing well! I'm exercising (walking), taking meditation courses and trying to get to a "new" normal. It's going to be an on-going journey.

Hugs to you and hang in there!
Karen

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

Hi Hennie, 3xneg myself. I have finished my chemo, had bilateral mestectomy and am in the process of my reconstruction with expanders. The 5 year stuff I read on the internet scared the hell out of me as well. The ladies here have since helped me let that go and focus on better odds and percentages as have been released by the Am. Cancer Soc. If your pain is really that bad or you are so scared call your onc office and request an earlier appt! Explain your fears and if nothing else at least request your onc to call you back and discuss your symptoms.
Sending positive thoughts and prayers to you.
Sandy

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Welcome Hennie. Although none of us are happy about the reason we're here. I've found this to be an amazing group, and hope you do too.

I can't completely respond to your concerns about the pain you're having, as I had a mastectomy in Jan 2011. (Standard for my triple neg inflammatory bc) But I still get some pain/nerves jumping even though it's been more than a year. I was told that happens as the damaged nerves regenerate. I was also told that it takes nerves an exceptionally long time to heal. I also have some lumps that are simply scar tissue.

I know the onc appt isn't for another week, and I know how hard waiting is. Would your onc office get you in sooner if they have a cancellation?

Come back and let us know what the onc says.

Hugs,

Linda

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Welcome, Hennie. I'm not triple negative but I want to comment about my own sore boob and it's "lumps". It's been 19 months since I completed radiation. My breast is still very tender, gets some shooting pains in it and generally worries me often. I also feel lumps and bumps. That I feel some and not one distinct lump is a good thing I've been told. At least 4 of those people with MD's that I see and two nurse practitioners have examined my breasts since I've whined about this. I've had mammograms, an ultrasound, and an MRI. I just had another mammogram and exam last week. They all say it's "normal breast tissue" and that the pains are probably after effects of radiation. I clearly remember prior to breast cancer that I pretty much stopped doing self exams because I always found lumps, but I couldn't tell you whether they're the same lumps or not. One of the most pertinent things I learned from Dr. Susan Love's Breast Book is to learn to become familiar with your breasts and to really know them. Prior to bc I can't say I actually did that.

It's very important to put your mind at ease about these latest developments and to report anything you're concerned about. I hope you will have the same outcome as me - I now beleive that what I currently feel is what MY normal breasts feel like, and I will know if anything changes. I know them from both the inside and the outside - our docs only know them from the outside.

Best wishes. Let us know about your appointment on the 12th (if not before).

Suzanne

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Hennie, I'm triple negative also. I started chemo the first of the year and finished it the first of June and had a lumpectomy on June 28. Radiation will follow as soon as I'm healed enough. I also have grandchildren--8!

I completely understand how you're feeling. When I finished chemo, I was glad, of course, but I started feeling very vulnerable. I saw my MO on Monday and she told me that the good things about Triple Neg is that it is very responsive to chemo and if there is going to be a recurrence it usually comes in the first 3-5 years. After 5 years, you're (we're!) considered cured. And most do not have recurrences. She also said to remain vigilant and anything that seems unusual or doesn't feel quite right and lasts for 2 weeks, get in to see her right away. So, it sounds like your appointment is in those guidelines, but I can imagine how anxious you must feel.

You might want to check our Living Beyond Breast Cancer: LLBC.ORG
They have lots of good current information mostly related to Triple Neg.

Stay with us here. There are a lot of us and we can be stronger by pooling our experiences and information.

Angie

MAJW
Posts: 2515
Joined: May 2009

Has your oncologist told you that after 5 years you're cured? I'm curious because I asked the same question to mine and he said "no"t they don't use the word cured..instead "remission" is used....

Hugs, Nancy

NewOne39
Posts: 29
Joined: May 2012

I had a double mastectomy 4 years ago with drains that looked like they would never stop draining but I stuck in there and the drains were eventually taken out (I had no swelling).

Then after 4 years I have recently had a recurrance in the lung. I too have been scared by the reports that I read on the internet. The Ladies here have helped me a lot to get past surfing the internet.

I found another site that have TNBC survivors and here is the site address. It helped me to read that some of these ladies are 8 plus year survivors. I guess each one of us is very different.

http://www.breastcancercare.org.uk/community/forums/just-diagnosed-triple-negative-caner

It has helped me to read about survivors instead of how little time I may have left because there really are people that survive and I had no idea that there were so many.

My prayers are with you.

NancyJac's picture
NancyJac
Posts: 96
Joined: Jun 2012

I'm actually triple positive and just now finishing up radiation. I've also had the shooting pains recently, sort of a combination on pins and needles and muscle spasms. I also have several saroma lumps which are benign fluid pockets.

Hennie
Posts: 11
Joined: Jul 2012

To all of you! Yes, I agree with this not being the best way to bring us here, however, I'm sure we are all very greatful for the existence of this site. With all that you have shared with me has helped me breathe easier. I WILL NOT go further on in reading online. Best is to hear it from this sisterhood or my onco ... he does have wonderful bedside manners which I always leave there feeling confident and strong. Right now my pains have subsided. The support which you, my pink sisters have given me is so much appreciated. I will keep you posted after my next onco visit.

Hugs
Hennie

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Welcome Hennie! Wishing you good luck with your appointment. Please come back and post what you find out.

Hugs, Diane

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

I am triple negative and was diagnosed 4 years ago; had mastectomy but no chemo/rads at that time, but reconstruction. Two years later, it came back under the mastectomy scar. This time, I had chemo first, which reduced the tumor size significantly, then surgery, then rads. The surgery removed a lot more tissue, plus the implant, plus 14 more lymph nodes; one was positive. So it's been 2 years since that diagnosis, and I've been feeling good and am hoping for many more years to enjoy my young grandchildren.

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Nancy (MAJW),

I first got acquainted with some of the current cancer language on the EC board when my husband was diagnosed last summer with Stage IV EC. And sometime I just want to scream, "Words, words, they're all just words!" Some there never miss an opportunity to point out that Stage IV EC is incurable and terminal. My husband and I choose to just think everyone is eventually terminal. And what's incurable today hopefully will not be forever. And,in the meantime, we think of it as a chronic condition that needs vigilance. That is our choice.

I had read that "cured" was not used any more (even tho' incurable is ??) and words like NED, or remission were in. So when my MO said after triple negatives have gone 5 years without a recurrence they are considered cured, I asked her about using that word. She said that while it is not true for estrogen/progesterone positives who can have a recurrence at any time, triple negatives who make it 5 years without a recurrence usually do not have one, so for practical purposes you can say cured. I was surprised.

Angie

Hennie
Posts: 11
Joined: Jul 2012

Onco visit. I was having the pain which sent me into a panic. Thinking the worse of course. My onco did a thorough check up. He told me that as far as he could tell there was NO MASS OR LUMP on my lumpectomy side nor on the other. He said that the pain was more than likely cause of my recent radiation treatments. This was music to my ears!! For my peace of mind he sent me to have a mammo and a sonogram. I've had them done already. Tomorrow I should get my results, therefore, I'm keeping a POSITIVE thought for good news. He also is going to schedule the removal of my port. It's terrible that fear kicks in so quickly, but guess we can't be blamed for that feeling to overcome us. For the moment I'm going to stay on a positve note because thinking otherwise is wasting precious time of life. Many thanks to all your words of wisdom. Please know that you, my new extended family are heavenly sent to me by only one, God!

HUGS TO ALL
HENNIE

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I just got on and have read through all the posts and am happy to see how far you've come! This is definitely the place to get questions answered and your fears eased. So glad you've seen the doc. and had the tests already done. I'm sending you a ton of positive energy for great reports.

I feel the same way about all the wonderful angels on this board. I've been here 2 years and these gals (and guys) have talked me off the ledge many times.

Stay with us and stay well.

Hugs, Renee

Hennie
Posts: 11
Joined: Jul 2012

since my last post already. Last time I was waiting for results of my CT Scans. I had chest, abdominal and pelvic scans. Good news is that they came out negative. Praise God for this outcome. The wait seemed so long for the results, but finally got them 2 weeks ago. Another thing which took place is I just had my mediport removed this past Thursday, Aug. 9th. Something I thought would not come soon enough, too. I didn't have good experience with it while I had it. I developed a blod clot in clavical area, therefore, was put on coumadin. UGH!!! More meds .... I'm really happy it's out but I believe I've got a new clot again right between my shoulder and armpit. It's the same pain I had when I had the other clot. It's an annoying throbbing and so tender to the touch. Even my clothes bothers me. Good thing I do pay attention to my body aches. Last time Dr. didn't think there was nothing wrong, but I insisted that this pain wasn't normal for me. Low and behold there was a clot!! I'm glad I spoke up when I did. A sonogram verified that I did have the clot. I just wish this wasn't happening again especially now that the port has just been removed!!! It's scary to know that you have a blood clot. Just hope it dissolves with the coumadin. I will call the Dr. first thing in the morning unless the pain gets worse from here to morning. Any one of you sisters experienced similar problem due to the mediport? Blessings and positive thoughts being sent to you all.
XOXOXOXO
Hennie

Hennie
Posts: 11
Joined: Jul 2012

since my last post already. Last time I was waiting for results of my CT Scans. I had chest, abdominal and pelvic scans. Good news is that they came out negative. Praise God for this outcome. The wait seemed so long for the results, but finally got them 2 weeks ago. Another thing which took place is I just had my mediport removed this past Thursday, Aug. 9th. Something I thought would not come soon enough, too. I didn't have good experience with it while I had it. I developed a blod clot in clavical area, therefore, was put on coumadin. UGH!!! More meds .... I'm really happy it's out but I believe I've got a new clot again right between my shoulder and armpit. It's the same pain I had when I had the other clot. It's an annoying throbbing and so tender to the touch. Even my clothes bothers me. Good thing I do pay attention to my body aches. Last time Dr. didn't think there was nothing wrong, but I insisted that this pain wasn't normal for me. Low and behold there was a clot!! I'm glad I spoke up when I did. A sonogram verified that I did have the clot. I just wish this wasn't happening again especially now that the port has just been removed!!! It's scary to know that you have a blood clot. Just hope it dissolves with the coumadin. I will call the Dr. first thing in the morning unless the pain gets worse from here to morning. Any one of you sisters experienced similar problem due to the mediport? Blessings and positive thoughts being sent to you all.
XOXOXOXO
Hennie

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

Just checking up on you, how are you?

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