Calling all TNs

TulipsAndDaffodils

Hi Amy,

Good luck with everything. One thing I want to mention is that I also came across that study about mastectomy having better overall survival for younger women with TNBC vs. lumpectomy. I was SO MAD because all of the doctors (at TOP medical centers) had been telling me there was no difference in outcomes, so they were recommending lumpectomy. Then I read that particular study and I was so mad they didn't tell me! Well, it turns out, that stupid study did not take into consideration BRCA status. DUH! And a disproportionate amount of the younger women were positive for BRCA. And of course, the women who are BRCA positive definitely benefit from mastectomy, because they are more likely to develop another new, fresh breast cancer, so removing the breast tissue drastically reduces the odds of that. I am BRCA negative, so this does not apply to me. When I brought up this study to my MO, he told me that they didn't factor in BRCA status, and I almost didn't believe him because that seems so dumb and such an oversight, but then I went back to the study and sure enough, my MO was right. I was really surprised that the study didn't mention this as the likely explanation for the young TNBC women doing better with mastectomy. Anyway, in the end, I was convinced that there was no extra benefit for me in doing mastectomy. So I chose lumpectomy with radiation, and I'm really happy with my decision so far (but I know people are happy with their decisions to do mastectomy, too).

By the way, of course you may end up with a pCR, and I truly hope so! There are definitely surprises at surgery time. Unfortunately, I got the opposite surprise……I had an MRI after Taxol, and it said there was no mass anymore….we were all sure I was headed to a pCR. Then it turned out I had a .8cm residual mass when I had my surgery. I just finished radiation, and I see my MO next week. I'm hoping to do some additional adjuvant chemo treatment (capecitabine) to really ensure this monster doesn't come back! But my point is, the imaging is really imperfect, and you may really still end up with a pCR. And even if you don't, the majority of women with residual cancer still survive.

Good luck!

Tulips

Kayak2

Hello all,

LBBC (Living Beyond Breast Cancer) is presenting a program on March 3rd from 6 - 7:30 pm (ET) called "Triple Negative Breast Cancer 360: Waiting for the Future". Below is the description.

During this free program we will explore how, in the future, targeted therapies will change the experience of triple-negative breast cancer (TNBC) - from a "one size fits all" approach to one that accounts for the diversity of medical, emotional and practical needs of people with this diagnosis. The program will feature a panel discussion of leading experts and women with TNBC followed by a Q&A session. Our panelists will discuss this issue from every angle and share their own perspectives. Attendees can also join the conversation by contributing their comments and questions during the Q&A.

You can register by following the link below to attend via web-streaming. (For anyone living in NYC who wants to attend the presentation live, I can also give you those details).

http://www.kintera.org/TR.asp?a=cfLNLWPDLfLEIRMHE&s=hjJWL5PHLhKYJdPSLtE&m=hsIJKZNGKiK0IiL

Oops, the link doesn't seem to be live. Not sure how to do this. If anyone is interested in the program, you can PM me with your e-mail address and I can forward the e-mail with the details and live link to register.

megomendy

Kayak2, I just tried that link and it let me register. Thanks. Hope I remember to listen.

Meg

bluedog

Yes, Kayak2, thanks so much for letting us know about the program. I registered for it just by going to the website llbc.org.

Meadow

Kayak, very cool! Thank you!

HausFrauMi

Hi guys and gals....writing from the chemo chair....getting my pre meds then a 15 min wait then the A part....then the C I think she said. Which was opposite of what I'd thought it was. Oh well

Adopted/Rescued the cutest lovable, 1-1- 1/2 yr old Rat Terrier mix. Fawn and White colored. Little 15 lb lap dog mostly house trained too! He came from a hoarding situation. Needs to learn to walk on leash but we will get a lot of practice to make me exercise!! Kids names him Felix.

Will see how we do.....

NancyHB

Hello all! Thought I would reach out and introduce myself. On my second dx; first time around (4 years ago) was ER+/PR-/Her2-, grade 2, had a high Oncotype score but small tumor so had dd AC x 4 and dd Taxol x 6, followed by rads. Found a new lump in the same area as the previous cancer; we assumed a local recurrence but learned for certain today it's a new primary, this time TN, grade 3. I've already had my lifetime max of Adriamycin, so my MO is recommending TC x 6. After having already had radiation I'll need an mx afterwards. I'm waiting on genetic testing to determine whether I need a bmx or will do umx with DIEP reconstruction (my preference).

My doctors keep telling me how lucky I am to have caught both of these so early and with no node involvement (ITCs last time, and this time, but not enough for micromets) - but I'm just not feeling the luck as I get ready to do this all over again.

I'm still learning alot about TN, as well, and feeling a little less confident about my outcomes as I was before. Looking forward to learning more.

Nancy

ScotBird

Amy all the advice here is good. We can't turn back time, we can only face forward. The study that was worrying you is known to be flawed as it did not account for BRCA status. My BC also recommends breast conserving surgery not MX: she is a renowned and well-respected expert.

I too had a bad day today - went for my second chemo, couldn't seem to stop crying, really embarrassing as felt I was letting everyone down. Chemo nurses, visiting onc and other patients were all being lovely and supportive but I could not snap out of it. Kindness of strangers just made me feel worse, really really sad. Then when I got home I was angry and snappy with my children and husband and felt even worse again: more tears, ended up sleeping on sofa at 6pm.

Only later I realised I had PMT and had just been feeling hormonal. Big relief, quite looking forward to early onset of menopause now!

Keep smiling at the things you can smile about. Acknowledge all the negative stuff in your head and then just try to breathe: focus on your breathing and let thoughts go if you can manage it (takes practice). I'm thinking of you and sending a big cosmic hug across the Atlantic to you. Just close your eyes, breathe and you will feel it. Lots of love to you all and try not too worry about anything you can't change or influence. XXX

Luvmydobies

Amy try to just breathe and take it one day at a time. We are here for you!Thinking of you. XO!

Haus my husband and I had a rat terrier! You're going to love that dog! We sadly lost her at 13 to heart failure but they're hardy dog's. We have three dobermans and she was the "boss"! They were so good with her because she knew how to discipline them. Haha!! Hubby wants another one but not until we dwindle down a little because four dog's were so much work! Enjoy your new addition. Would you mind posting a picture?

Nancy, welcome to the forum but so sorry you're going thru this again. Stick with us and don't google TN because you'll mostly find all the negatives, just like you do when you google anything! Just trust your doc's as they know your particular case better than Dr. Google! This is a wonderful group and we are all here for you! XOXOXOXO!!!

Meadow

Nancy, Welcome! I think you will find that TNBC is not as scary as Google.

Praline

I had my second chemo treatment and it was pretty uneventful. Just the usual lightheadedness and shakiness like last time. Chemo nurse says it is the Benadryl and the steroids.

Nancy- Welcome- This is a great place to visit and everyone is so nice.

Scotbird- I am sorry that you had such a bad day. I hope things get better. I am sending prayers and positive thoughts across the ocean.

NancyHB

Thanks for the warm welcome, all. I learned the first time around that Dr. Google is not my friend!! I do recognize the facts associated with TN and accept them - it is what it is. My first cancer was ER+ with an Oncotype score of 42, or 28% recurrence, so there's always that to contend with, too. In my mind I think maybe the TN and the previous ER+ are going to simply cancel each other out and I'll be home-free after this. (a girl can dream, can't she?) Instead my MO likes to point out I now have two different points of recurrence to watch for. But they're being aggressive, and no one's downplayed this early-stage dx, so I feel better.


Has anyone else here completed TC, instead of the standard AC-T? Therein lies my only concern, as I know the Adriamycin is preferable. Just curious.


Hope everyone is doing well as they start treatment. It's tough, but doable, and in my own experience I can look back now and think, "It wasn't that bad." My husband reminded me that prior to my third AC, I told him I wasn't going, that I was done. But I went - over and over again - and in the end I used my new-found strength to push through some other barriers I didn't think I could do, or simply didn't want to do, including running (I'm training for a half-marathon right now). Funny thing is after all that treatment four years ago, nothing seems really impossible to me now.

*hugs* to you all.

Lou53

Nancy, I am doing 6 rounds of CT and rads after a lumpectomy. I couldn't do the "A" stuff. I read that 6 rounds of CT instead of the usual 4 is pretty close to receiving the big "A". I have also completely changed my diet and lifestyle hoping that will help keep this beast away. Sending prayers

Joesmom23

Good afternoon. Found out yesterday I was triple negative. I found the lump in my right breast - 2.17cm - 4 months after my last mammogram/ultrasound. US biopsy and MRI showed nothing else in right breast, nothing in left and nothing in lymph nodes. (or at least that's what my surgeon has told me.) Her nurse told me yesterday that since it's invasive & TN - I should expect surgery, radiation and chemo. There's no game plan yet as I'm supposed to talk to my surgeon on Monday. I also have a 2nd opinion set up in NYC - and setting up an appt for a 3rd with Sloan Kettering.

I'm petrified. The more I read - the more afraid I get. I want this over with. I'm afraid to get sick from chemo. I'm afraid of my 7 year old son seeing me that way and I'm afraid to miss ANY part of his life!! I'm trying to live day by day... (Is anything going to happen or change today? No? - Then don't think about it and enjoy your life)

I don't want to do this and - more importantly - I don't want to do this again in 5 years. (Good Lord - he'll be 12 then!!) I just feel like crying all the time and hiding in my house..

Meadow

Joesmom, hello and welcome. OF COURSE you are upset. You have been through a rough time. ..diagnosis and the start of treatment is the hardest part for many. Me included. But trust me, things will be better. You can fight this and win! But you will need energy to do that, energy that you are nowusing in stress and anxiety. Please try to get to a more calm place. If you pray, have others pray for you to be calm and strong. If your days are shorter than you wish, do not give one of them away to fear. Good health can be yours again! Hang in there

LoveMyVizsla

Joesmom, take a deep breath, exhale, repeat. You are doing what you can at this point, which is to gather information, including from opinions and second opinions. It takes what seems an eternity to get answers, but you will soon have a plan.

Personally, I haven't been "sick" from chemo, more like just not myself for a few days after infusion. I've found that the best advice I read was to stay active. I continue to walk my dog and go on short hikes most days. I take a day off now and again, but who doesn't?

I also found that for me, it was best if I stepped away from Google in the evenings. If I didn't, I didn't get a lot of sleep that night.

Feel free to ask any questions you have, this is a great group.

Cathytoo

NancyHB...I have chosen to do TCx4. However, I have the option of adding two additional infusions. I saw two oncologists. One preferred the ACT and the other said his hospital was totally eliminating A because of possible future heart problems. I just found out yesterday that one of my friends who is a 30 year survivor was TN. At the time her doctor told her she had the basic "garden variety" type of breast cancer! She did the old CMF and is here to tell the tale. It's all a crap shoot and we have to hope we are holding the winning dice

CarolinaAmy

Nancy and Joesmom, I'm so sorry that you're here but glad you found this board. It's a great support during every step.

ScotBird, I think I was confusing in what I was saying. I've decided on a BMX, but I once again ran across the study talking about LX + rads having better outcomes for TNBC. I was startled by that the first time but I think I dismissed it because I didn't think it accounted for stage (later stages are more likely to have both mastectomy and poorer outcomes, but they're not related). Now I can't remember, but it's freaking me out. A big part of choosing mastectomy is to most likely avoid radiation, and that seems to be the problematic part here.

What I CAN'T find again is the study talking about improved outcomes with mastectomy for TNBC. Grrrr....

(Here's the study I found that has me upset: http://cancerology.blogspot.com/2011/06/lumpectomy-better-than-mastectomy-for.html)

NancyHB

Well snap - that's kinda scary because I can't have rads again. Interesting article though; I'm going to keep researching this topic. Thanks for sharing, Amy.

Cathy, I'm starting to agree with you - this all just feels like a crapshoot sometime.

Cathytoo

NancyHB...even though we TN's have a higher chance of recurrence, I have met many TN women who are very, very long term survivors. Also have met several ER+ women who had cancer come back...one after 22 years! So, I'm trying not to think statistically. I'm doing everything I can do medically and when I finish my treatment I intend to make food my medicine. This is basically a quote from a woman who is a ten year survivor of TNBC. I've read that a low fat diet and exercise is the best defense against a recurrence.

Shopgal2

welcome Nancy and joesmom. Sorry you have to be here but glad you were able to find bco and this board. Hugs to you both.

Kayak thanks for the link. It's cool that they are doing that on triple negative day (3/3)

azrescue

Hi. Just wanted to introduce myself. I was diagnosed on Jan 28th with breast cancer. It took awhile to get back the results on my HER2 (fish) but finally got it and it was negative. So here I am triple negative. I am 47 y/o (just had a birthday on 2/13). I'm the mom to two amazing kids, ages 9 & 5. And I am very fortunate to have a very supportive husband in this, who is absolutely dedicated to finding the best care for me.

I had been being monitored for over 3 years for a lump I discovered in my right breast while weaning my daughter. I faithfully went every 3 months for followup mammo's and ultrasounds for two years. At the two year mark they said it was most likely benign and moved me to every six months. I could feel it get larger. Went in for my ultrasound and again was told it didn't look suspicious but recommended a biopsy simply due to the growth. Then at the surgeons office she wanted to skip the biopsy and go right to a lumpectomy. This however didn't feel like the right move to my husband and I. We really felt like the biopsy should be first before cutting into something that we had no idea what we were dealing with. Thank god that was the right decision. At this point we traveled to MD Anderson in Houston ( a 10 hr drive) .... they biopsied it and it came back malignant. Of course, I felt overwhelmed, terrified, and disappointed in the care I'd gotten over the past three years. As we have moved forward with this. I have seen a local surgeon and oncologist. I am suppose to go back for the followup with MD Anderson oncologist in March (that was the soonest they could get me in) and see what their plan of attack would be. And we just returned from KUMed in Kansas City. I was VERY happy with the dr's at KUMed and we are leaning towards choosing them as my team. The oncologist there has suggested a newer treatment plan that they are seeing very good results with triple negative. It would be a treatment once every three weeks (carboplatin & taxotere). Has anyone else had this regimen? How bad or good was it? Everyone is on the same page and planning a double mx. I have very dense breasts and many other fibrous areas in the left that have been monitored as well. And it simply seems like russian roulette to leave it.

My biggest concerns are my children ... they seem to be little troopers so far but how will they hold up once I start chemo? I want to maintain our "normal" routine as much as is possible. We are honest with them and have a very open dialect with them. They both know they ask ... we tell (of course as is age appropriate). I try not to focus to much on the recurrence issue with tn. I am determined to not be one of those statistics. I ate pretty healthy prior to this and have drastically stepped up that. NO sugar, green juices, ginger, no processed foods, organic only, etc. I have increased my exercise. I think one of my biggest challenges to tackle is the anxiety and stress. I must find a way to better cope. I am interested in starting yoga and meditation. I feel deep in my heart that my many years of high stress and anxiety (panic attacks) led me to where I am. But I also am trying to not blame myself.

Well, that's where I am at.

jenjenl

I am seeing an increase in woman getting carboplatin added to their chemo. Your kids will adjust through the process. I too did a 6 months sit and wait, when i should have had it biopsied then - frustrating.

bluedog

Azrescue, yoga has been a huge help to me throughout treatment. And, yes, lots of encouraging news about carboplatin. Hang in there.

JJ62

Azrescue and Joesmom23 you have come to the right place. There is so much knowledge and support with BCO. Please know there may be more than one right answer as you make choices. When I was diagnosed wanting to live long enough to have grandchildren was really important to me. I am six years out and about to meet my first grandchild. I am 100% healthy and looking forward to seeing this little boy grow up. Hang in there!

chambo

azrescue - you can't go wrong with the Jayhawks treating you (KU - Rock Chalk!)

LoveMyVizsla

I asked my MO about carboplatin, but she didn't think my immune system would be able to handle it. Definitely ask about it when you have your meetings.

Lookingforward66

Dear All,

Trying to do in hurry as have meeting to go to. Sorry not using names as don't have time to do my chart I normally have when I post on here.

Here is a link to chopra guided meditations.

http://www.chopra.com/ccl/guided-meditations

I use them all the time. I added it to my home screen on my smart phone so I can do it when I get a chance or feel I need it.

I go to yoga twice a week & walk when I can with friends. We make a chat fest out of it. Funny to watch I have been told. I firmly believe attitude is a big factor in our fight with TNBC. I keep my B12 & D3 in high range.

My UM Sylvester facility has excellent services for us BC people. Counseling, group meetings, acupuncture, yoga & exercise classes, etc. I am lucky as my town has yoga classes free for us over 60. It was through the school system but they cut back on their budget & they stopped the funding. Our town picked it up. We are grateful. We have good senior services programs. I have my good & bad days & go to counseling to help cope with the what if/why me mental games we go through. I am 3 + years out & feel blessed. I eat smart , exercise, get good rest & keep my mind occupied with good stuff as much as possible. This blog has helped me many times. Smart, mostly upbeat ladies trying to live full productive lives. Supporting each other is so important in our fight & this Group is the BEST!

Much love to all, may you find this is only a bump in your road.....

Marsha

HausFrauMi

My 9 yr old is taking this the hardest. We visit a therapist tomorrow evening to monitor his moods/sensitivities. This isnt necessarily new behavior for him but it's a new trigger so we need to keep things in check.

If you have kids don't forget to look into Camp Kesem to see if there is available spaces for a free camp this summer for your kids!!

Loving our new addition Felix! He is the best cuddler and learning some tricks. He listens quite well and doesn't complain when we put him in his crate. Gotta give him some time to learn the house rules and what he is allowed to chew on!!

Had my first chemo on Friday - AC then a Neulasta button on my belly (aka Iron Man) that administered Saturday evening. Easy peasy! I just feel blah. Not good not bad. Uninterested. Unfocused. No nausea no fever sorta achy but nothing significant If I just sit here I'm ok but I get up and feel odd. Jut hoping my sennakot/lax works soon. Constipation/Diarhhea is my nemesis. And I am drinking more than I normally ever do.....so that isn't the answer unless I get a bladder cath!

Curlyq1974

Hi HausFrauMi, I am so fascinated by the Neulasta button! I completed treatment in May of 2014, and had to return to the clinic the day after my chemo for my Neulasta shot. Just shows how fast the technology is changing with the fight of the ugly monster. Not sure if any one told you, but for me, the first Neulasta was horrific with bone pain. I thought someone was driving a semi thru my pelvis. The pain was like nothing I ever experienced in my life! Then a wonderful woman on one of these boards told me about Claritin. I don't know why or how, but it was a wonderful tid-bit of information. I took Claritin everyday from that point forward and I had very little pain with the subsequent shots. (Also helped with the spring time allergies) !!

I had to smile about the way you said you just feel blah. Yep, that sums up my chemo experience. Rounds 5 & 6 were complicated for me... another tid-bit, I didn't know until too late, you can ask for fluids via IV. For round 6, it wasn't an option, I was sleeping a lot, and not keeping up with my fluid intake and was dehydrated. 1 week post chemo, I went in for a fluid IV... AMAZING how much better I felt!

Best wishes to you as you go thru this! You have found a great group of women for support.