Calling all TNs

Jianchi

cocker, thank you!  I guess I am getting all this because I am seeing another breast surgeon.  

Jianchi

luah, did you have a lumpectomy or mastectomy? Thx!

BanR

Just noticed today...not finished my chemo yet, one taxol is left and lo behold! my hair has started growing back!!!!

Jianchi

BanR- HAPPY for you!!!

adagio

cocker - I hear you about losing a mother. My Mom died when she was 54 years old - she never got to see me become a mother and my children have grown up without her - many times I have cried and longed for my Mommy - mother daughter relationships have got to be one of the most special things in life! I cherish my 2 daughters immeasurably.

journey4life

BanR - you'll have a full head of hair before you know it!

I am so lucky to still have my mom. She was there for me throughout both cancer diagnoses, surgeries, chemo, doctors' appointments and tests. I don't know how I would have made it through without her.

Annie - I'm sorry you were robbed of being able to grow up and grow old with your mom. It concerns me that your mom had ovarian cancer, you are a BC survivor and your BRCA test was inconclusive. Did anyone mention repeating the test? Have you had an ooph?

Hugs to all, 

Lisa

Titan

Journey and Annie..I will be sure to send you any leftover $$$..you can count on that...lol

Annie..about your mom and the "old days"...my paternal grandmother died of BC....in her 70's.....it was so hard to get information from any family members about this...it's like they didnt want to talk about it...blah....on the other hand once they finally told ME...I told all my nieces about it....they talked to their obgyn's and now are having a little bit better monitoring than before...they are still very young..my daughter is 25, nieces are 28, 29 and 31 but they needed to have this information....it kind of shook them up a little..having an aunt and a great grandmother with bc but they all needed to know....

TifJ

Looks like several of us have lost our Moms. I was 33 when my Mom passed from cancer (started out as cervical and spread to the colon). She passed 6 months before I ever met my husband. I know she would have been a great grandmother to my kids- my Mother-in-Law certainly never makes time for them.

LPBoston

Titan - I commend you for letting them know - it needs to be discussed

journey4life

After Reading the discussions on whether how much time passed between dx and tx affects the outcome or prognosis, I looked at my timeline and said "oh $h!t"! I was diagnosed early November, had surgery the end of January and didn't start chemo until mid March...that's a long time!

Stupidboob

OFF SUBJECT but I know there are a lot of people on this list that pray.   I am asking for prayer.

Calling all prayer warriors out there.  My brother is having open heart surgery tomorrow and I am asking for all the prayers we can get.  For him to breeze through it, the doctors to be at their best and above all that God protects him through it all. 
I LOVE YOU BUB   His name is Bill Blankenship

thanks ahead of time............a real stressful time right now

InspiredbyDolce

Prayers are on their way for Bill! Let us know how he does, okay? 

Journey, the study was from surgery to start of chemo, so you will only need to count from your surgery date to chemo. That should help you a bit!  

PeggySull

Prayers for your brother coming this morning, both for you and your brother.

Huge,

Peggy 

LPBoston

Lots of Prayers for you and your family!

kathyrnn

Noni - thank you for the uplifting story

Fighter - great news!  Fight on!

Journey - I'm sorry to hear you may need more surgery but I'm glad your doctor is being proactive.

Titan - win big girl!

Stupidboob - prayers sent for you and Bill.

TifJ, Adagio and Cocker - breaks my heart to hear you all lost your Moms at such young ages.

BanR - yeah to peach fuzz!

Nope Cocker - I'm not at the casino.  Busy week getting my radiation set up.  Mom has lots of adopted daughters and you're on the list. I often read your posts to her and she says with your wacky sense of humor that you must already be in our family tree somewhere.  BTW, she says that since you couldn't make it to her recent surprise birthday......she'll be watching her mail for some of those cream cakes :-0. As to the boils......just ugh!!! I would see if the doctor can give you something.  If not antibacterial soap, warm soaks and an antiseptic cream

Thanks everyone for your prayers, Mom is on the mend and being discharged back to the nursing home today.

kathyrnn

ohhh I forgot, Mom had I lovely surprise last night.  As I was leaving the hospital I happened across my MO at the nurses station.  She very graciously came down to meet my Mom.  Made my Mom very happy to meet her.  (Really, my new MO is one of the sweetest doctors I've ever had)

Nettie1964

journey4life, I was the same as you after reading the statistics!  I was diagnosed in November, surgery in December, but didn't start chemo until March!  I had several things interfere with getting started!  So now, I'm also worried!

Stupidboob

Update on Bub:  He is out of surgery, the doctor said it went very well. He is doing well and they did have to do the valve replacement (not repair) they did the ablation and removed the appendage, remove 4 liters of fluid from him.  Should be able to see him in about an hour and half.  Praising the Lord and thank you to all your prayer warriors, please keep them coming.

Cocker_Spaniel

JIanchi/Journey  I had my surgery on the 23rd November 2011 and didn't start chemo until March 2012.   Try not to worry (I know,  I know) but I'm sure things will be ok for you. As Luah says stay well rested and away from any bugs and infections as much as you can.  Sending  Big hugs.

BanR congratulations on the incoming hair  You will soon be going for your first trim.  I have always had real wavy hair and now it's as straight as you can get,  so maybe expect a change of some sort when it grows in.   

Titan back in those days illnesses and gossip was sort of whispered behind closed doors.  I'm so grateful that we are now so open about things, even men's problems, and can talk and discuss about what is going on.

Journey I am going to see my BS this coming Tuesday and I will discuss with him about having the BRAC test repeated.  Being inconclusive it left me so much up in the air so I don't know whether further surgery is recommended or not.

Stupidboob - sending heaps of prayers for you and your brother Bill.  He will be in god's hands so I am sure he will be ok.   Try not to worry or get further stressed. Thinking of you and sending huge big hugs.     

Fighter thinking of you and hoping all is going well. xxx

Kathy our mum is so sweet (and brave) to accept me as a daughter. I'm probably the black sheep of the family lol.    I hope that nursing home is taking good care of her and not giving her too many crunchy (I call it raw) veges.  All the restaurants must just dip them in water and out again cause they whip across your plate when you are trying to eat them. I just can't have that for our mum.  After all if God had wanted us to have raw veges he wouldn't have sent us pots. As for the surprise birthday party I wasn't even invited (I cried for days!!) but I do hope she enjoyed the wonderful surprise bless her heart.   You take good care of her now and you tell those little old men in the nursing home that she doesn't want to see their budgie's....................................in a  cage. (Just in case you are wondering they are allowed budgie's in a cage! and cats in the nursing homes here. What a  mixture though cats and budgies.)

I must tell you about last Thursday. An old gent from the nursing home just across the road from the surgery came wandering in.  He had a shirt on that was done up all sqeuwiffy and no underpants on.  The waiting room was packed as usual.  I went up to him and said what are you here for darling, he said I thought I was missing morning tea.  I said no you haven't missed it, got one of the girls to bring a towel to cover him and took him to the tea room and gave him a cup of tea and some biscuits until the nursing home could come and collect him. But shit I laughed afterwards at some of the expressions on the faces in the waiting room.  Dear old sole.

Remember ladies smile if you can and even better laugh if you can. Have a good day.

   

ksmatthews

NONI thank you so much for posting such encouraging news.  Next month I will be 3 years out and I can't wait till I can say 26 years!
 

J4DC

hi, everyone, I was diagnosed on 11/04/13 as IDC , 1.5 cm,  stage 1, TNBC, 0/5 nodes, did lumpectomy in November, started chemo on December, 4X AC, every two weeks, 12X taxol weekly. I just had my first Taxol today and it seems to be easier than AC - fingers crossed. I am still trying to learn and I am so glad to find you here. 

I went to see a radiology oncologist today and find myself more confused about all the choices. I was planning to do BMX after chemo to reduce risk of recurrence. I have small kids and want to do my best in the treatment. What he told me is that lumpectomy + whole breast radiation offered the same overall survival as BMX. BMX may have 2-3% lower local recurrence but the overall survival is the same. I am a little depressed to think about what would be the better option as this time. Any suggestions? Thanks! 

Stupidboob

Thanks Cocker

Last update before going to bed.  Bub is off of the ventilator, got a little nauseated but they have that under control and he is resting.  She (nurse) said that this was good with it being just 4 hours since getting him back there.  Praise the Lord.

tekwriter

Great news StupidBoob, I lost my brother a couple of years ago and I am realllllly praying for yours, so great news. J4DC glad you found us, sorry you have to be here. I am fairly new too and have not had surgery yet myself.  I will be making those same decisions soon. I am still up in the air and will probably be dependent a lot on the surgeon and Onc recomendations.  Good luck to you.

journey4life

Stupidboob - so glad your brother's surgery went well. I'm sending him healing vibes so his recovery will be just as successful. 

Inspired - its good to know they start counting from surgery to tx, not from dx to tx. That sounds much more encouraging!

Fighter - thinking of you. Be sure to update us when you're able.

Titan - I'll be waiting for the leftovers!

J4DC - so sorry you're here but glad you found this forum. You'll find plenty of support, caring and knowledge here. I wish I could give you help with your decision. Because of BRCA1, the decision was pretty much made for me, that a bmx would give me the best chance for survival. Good luck with your decision.

Kathy - I'm glad your mom was discharged so she could go back "home." I'll bet she's resting more comfortably with peace of mind to be in familiar surroundings. I admire your strength in caring for her at the same time you're dealing with all this BC crap. 

Annie - be sure to let us know what your BS says about retesting you. With all the technology now, it's hard to believe they can't provide more conclusive results. 

Thinking of you all and hoping you enjoy the day! Lisa

maryna8

Hi, all.  I have triple-neg, don't know all the abbreviations yet, I guess.  Just found out 2 weeks ago I have IDC, 2 days ago found out it was trip-neg.  It shocked me, for some reason I assumed I would have the hormone-dependent cancer, I guess because several ladies I know had it.  They told me of their experiences, I figured I knew somewhat what to expect; now it's all out the window.

I am 61, had normal mammogram in Sept. 2013, had a normal physical-gyno hands-on exam in December 2013.  Nothing, nothing.  In the later part of January I noticed a breast pain, when I investigated the pain I found a large-ish lump in my right breast.  I have since been told it is about 3 cm.  Also it's not a round smooth lump but a squashy lump with fingers going out, (my scientific interpretation!)  

I have a couple questions: maybe someone has insight I would be interested to hear.  When I thought I had the hormone-dependent (respondent?) type of cancer, I was going with lumpectomy.  Now that I know I have a more aggressive unevenly shaped tumor, and I have small breasts anyway, I am thinking mastectomy.  Any insight there?  Also, my oncologist is weighing whether or not to do chemo first, and then surgery, to shrink the tumor.  My instinct is to just get rid of it.  My surgeon has a stellar reputation and I'm thinking that getting rid of this painful lump that makes me feel like someone hit me in the chest would be better just gone, instead of messing with it.  I am aware I will need chemo at some point.  Any insights on the neo-adjuvent chemotherapy?  I have had a mammogram, 2 ultrasounds, a biopsy, an MRI so I think the docs are armed with a lot of information.  I do plan on speaking with the surgeon and oncologist on Monday to get going with things as soon as possible, but welcome any thoughts.

I am so glad I found this forum, so nice to be informed of everyone's experiences!  Thank you!

PeggySull

maryna8,

I was exactly the same age at diagnosis.  Found 4 smallish tumors, tnbc, one of which changed to 30% hormone positive following surgery.   I had chemo first and I'm glad I did. It gave me a chance to experience a taste   of what I would have to look forward to  if I had a recurrence.  Because tnbc is so responsive to chemo it made sense to me too that the sooner those cancer cells are blasted out of my whole system, the better.  Surgery is local therapy; chemo is systemic.  I'm glad I got chemo out of the way first.  My bilateral mastectomy was a piece of cake afterward.  I did gentle yoga during chemo and had a great range of motion after surgery.  Bilateral M does not increase the overall survival risk but does prevent 98% of getting it in the other breast.  Also by doing this I was able to avoid radiation, a treatment that may be helpful down the road if cancer recurs.

Finally, they can estimate how complete a response you have to chemo if you do the surgery after the chemo.  That was important data to me.  If you have surgery first, you can't get that data.

The downside to me was that  with or without recon if you get a mastectomy you will not have sexual feelings in your breasts and of course it is a more extensive surgery with all the risks that go with that.

Having said all this, it is truly a personal decision.  We're all behind you, whichever choice you make.  Hang in there.  This deciding is one of the most stressful parts of the whole process.

Hugs,

Peggy

kathyrnn

Cocker - not to worry, we only have black sheep in this family.  Loved the story about the old gent!

Great news Stupidboob!  Prayers still coming.

Journey - thank you for you kind words.  I am really struggling right now with the decision of whether or not to bring Mom home.  (Her pneumonia came back less than two weeks after she stopped antibiotics, so may be safer in NH)  Finding good help to do home care is not easy.  I'm really struggling with this decision.

Maryna8 and J4Dc - sorry you've had to join us but welcome.  The decision between MX and LX is one we have all struggled with.  One question is, have either of you been BRCA tested yet?  If you are positive for the BRCA 1 or 2 gene, it may sway your decision one way or the other.

The one advantage of having your chemo first (neoadjuvant) is that your doctors can see if the chemo is shrinking your tumor.

This is just my personal experience and please remember that hindsight is 20/20.  In hindsight, I wish I had insisted on a MX and a total Level 1 and 2 lymph node removal ( I don't know if my surgeon would have even agreed to do that at my stage of disease and because of the risk of lymphedema)  My Sentinal Node biopsy said that my lymph nodes were clear.  9 months (actually 6 months, diagnosis of the recurrence was delayed)  after treatment 3 cancerous lymph nodes were found in my sub pectoral region.  They have been very honest in saying that they may have been there all along and missed by the Sentinal Node (SN) biopsy.

The reason I don't want you to knee jerk and lean to MX is because of how cancer travels.  It travels through both the lymphatics and through blood.  So MX in itself is not the whole answer.  It's chemo and radiation that hunt the bastards down and kill them.  The statistics do show that the survival rates are almost the same for MX and LX.

As others are gonna tell you, it's a personal decision, and there's no right or wrong.

maryna8

Thanks, Peggy, for sharing your experience.  These are such tough decisions!  I had my decision made until 2 days ago, and hadn't heard anything about neoadjuvent before then.  Hard to wrap my mind around it, my mind feels like a squirrel in a cage.  I was going to go to the memorial service today of the uncle of a dear friend, and completely forgot about it even though I talked about it yesterday with another friend.  Ugh!  It's over now, so I guess I will make mea culpas later. 

My oncologist said another good thing about chemo before surgery is that it can shrink a tumor enough to make a lumpectomy more viable in a small breast.  But a radiology doc told me yesterday in his opinion a mastectomy is the only way to go, just the safest route.   Although the cancer can come back anywhere, it seems.   Kind of a roll of the dice.

Thanks for the support, once I make my mind up I know I will feel better! 

maryna8

Hi, Kathrynn.

I have not been gene-tested to my knowledge.  From what I have read it takes a month to get results, I don't really want to wait a month to get the ball rolling on something.  It would be good to do for other family members' sake as well as our own, though.  I'm sure it will be suggested at some point. Right now my oncologist is thinking moving forward as quickly as possible, which is fine with me.  Just don't know what direction yet.  He was speaking with the surgeon over the last couple of days, I will probably learn Monday in what direction they are leaning in my case.  Here's an interesting fact: cancer doesn't grow on weekends!!  It must not, because everybody that tests you and works with you through the week is off, so I assume the cancer is off too!  Haha, bad joke.  Seriously, I don't like weekends anymore. 

Thanks for your input, you have all been thru so much!  Question: why does it seem that many of the women here have had LX and then later MX?  Recurrence or just cautionary?  Or both, probably?  Haven't had time yet to spend as much time as I'd like here, trying to get some things squared away.

Talk to you soon.

LPBoston

HI Maryna8,

I had a lx in Dec 2004 and then an mx in 2013 due to recurrence but my recurrence was on the right breast where the first was on the left with DCIS.  This time around it is TNBC. I often wonder if I had just taken care of it all back in 2004 if I would be in this situation.  You just never know.  Good luck with your decisions - you've found the right place to ask questions and the people on here are all so wonderful and knowledgeable. 

LPBoston