hhfheidi - Love those days!! Glad to hear you had a good one.

MicheleS,

Thank You, and we could all use a good weekend.

MBJ: My mother in law flew in from Brazil to help me till January. She is a very big help.

Lynn18: Good luck on your MX. What time is your Surgery? 

Everyone : Thanks for the words of encouragement. 

Have a great weekend .

Sugar:  OMG!!!!  Your hair is straight!!! Did you use the Marc Anthony Straight??? Sooooo Cute!!

MonikaV:  So glad you are going to have someone by your side to help you through this.  I only had one side done but it was still difficult to get in and out of bed.  Do you have an angled pillow for stting up during recovery?  This really helped me so much and made it easier to get in and out of bed without help.  Hugs!

MBJ - today I used the luster cream from Sally's. I let it air dry as usual but then blow dried just the very front bangs when it was almost dry.  I tried blowdrying the whole head last week and it was a disaster...poofy and kind of frizzy. I'm getting it cut next Saturday so perhaps some of the curl or frizzy ends will get cut off.

Hi Laurel, Welcome .

Titan - I was tested for the BRCA gene and I am BRCA 1 positive.  I was tested because my cousin passed away last year at the age of 36 of breast cancer.  The gene mutation is passed from my Father's side of the family through my great grandmother. So the relation is not close but many many cousins and aunts have passed away to breast & ovarian cancer which is due to this gene mutation. My sister was tested over the summer do to my dx and she also tested positive for the gene. The statistics for testing positve I do not know exactly but I do know that it is very low and chances are you are not positive. I would do the testing if I were you but that is just my opinion. I have a daughter, 2 sisters and nieces that I did it for. I feel that knowledge is power.

Laurel:  Hate to see you here, given the reason, but this board is wonderful and so are the people on it!  I too am Triple Negative, and my tumor is also apparently small.  My situation is a bit different... they call mine an incidental finding.. based on no lump, no mass, only 4 microcals on a mammo.  My IDC was taken out at biopsy... all of it... and the size is unknown.  The only thing found at final path was DCIS < 1 cm.  My onc has recommended 4 rounds of TC (either carboplatin or cytoxan, my choice) every 3 weeks.  I'm getting a second opinion next Wednesday with an onc that only does breast cancer and have been told very educated about TNBC.  I highly recommend a second opinion... if for nothing else than peace of mind.  Let us know what happens... I'm very curious what you end up getting.  My onc said she didn't feel I needed DD or adriamycin...

Thinking about you, Laurajane, and hoping you're getting the rest you need for a speedy recovery!

Lynn - surgery was a LOT easier than chemo for me.  After I'm done with my cancer journey, I'll have had a BMX, chemo and rads.  I am BRCA1+, so is my sister.  She was dx at 44 years old.  My 1st dx was over a year ago at 39 and then again 10 months later.  Even though I got BC after my BMX, I'm still glad I had the surgery.  Oh, I forgot...  I'm getting a hysterectomy/oopherectomy after rads. 

Hello Lululani

Our diagnosis are so similar  - thank you so much for sharing your story here. Until now I have never met someone with occult - let alone  triple negative and nodal involvement!  I will tell you my long story so thanks all for patience reading!

I was diagnosed last October (a year ago this week).  My doc was doing a heart scan due to a bad blood result he said fortold heart disease - (and also cancer I later found out).  The scan showed my heart was perfect - but it  showed a lump under my right armpit .I don't have the exact size on hand - but I think it was smething like  3 x 5 cm ish....so was pretty big but very deep.  But once he showed me and felt it was very palpable - like a cementine.   The thing is, I had a clear mammo and us 6 months earlier - was told as many were here that I had dense breasts. 

My doc too thought was lymphoma at first blush - especially since my cts had other enlarged nodes - in  axilla but also supraclavicle, around liver and small intestine.  He did biopsy and came back "adenocarcinoma likely of breast origin"...so, they then thought breast cancer.  It was me who was in denial - not my docs.  They seemed so sure due to the pathology.  They wanted to do mastectomy - but I said - you show me a lump in my breast and then you can cut it off - until then - keep on looking - on came more cts, mri ,mamo and ultra sound...and more needle biopsies that showed "suspicious cells" only but no lump.  So like you I was given the "occult" diagnosis.

 So they went to tumour board and came back with the idea of doing an axillary dissection only to get more detail on the mass.  I agreed, because I was still reluctant to do mastectomy, thinking they still had my diagnosis wrong.  After removing 29 nodes - 9 were positive and pathology showed still consistent with breast primary.  My doc ruled out lymphoma - saying lymphoma pathology looks very different than breast pathology.  Staged at 3C because of the # of nodes and supraclavicle nodes too.  I was becoming more convinced but still not sure.  Docs said we can wait for mast but start chemo because of so much nodal involvement.

Then started chemo in Jan - similar to your chemo.  Was supposed to be 3 rounds of FEC 3 rounds of Taxotere - all given every 3 weeks. I'm in Canada and carpoplatin is not protocol. I started the FEC - got through 2 rounds before I ended up in the hospital with severe diarrhea , dehydration and neutropenia.  I have trouble with staying hydrated because I have no colon - was removed 10 years ago after many years with ulcerative colitis. I have internal pouch fashioned out of my small intestine to replace my colon - and it just couldn't take the FEC. The onc then decided that I couldn't handle the "F" so took it out of my third round.  Then she recommended 12 weekly taxol instead of taxotere - saying the taxotere would be too hard on my gut and with weekly taxol she could monitor symptoms and adjust if necessary.  I fought that one too...but lost.  I wasn't looking forward to weekly chemo.  I finished in June - it was rough mostly because I only had one day week that I started to feel better before they hit me again..but she was right - it was easier on my gut and I didn't end up in the hospital. The biggest SE was neuropathy which got quite bad about halfway though - couldn't even stand up on my feet for a few days - but she lowered my dose and did improve slightly - and now 4 months later have mild in my feet only. So she was right....

I then came to the boards here for advice...because I needed to decide if I was going to do mastectomy or not..(or maybe both) because I was finally coming around to accepting that this was of breast origin and not something else.  Oh...I also had brca testing done because was eligible due to my age (41 at diagnosis) and TN status...was negative.  So although that was good news, I was actually hoping for positive because I could then be more sure was breast.  But was negative, so back to the drawing board.  My surgeon wanted to remove one or both....PS the same...but onc and rads onc were no so sure.  They said that athough recurrence risk was high...mestasis was more likely in the future than local recurrence due to nodal involvement - and breast removal wouldn't change that risk.  The ladies here were all so helpful....and I finallly came around to decide on uni mastectomy with diep reconstruction.  That was scheduled for August, with 25 rads to follow.  

But there was a twist in that plan too...post chemo scans showed enlarged nodes on my "good" side in my neck - they had been there before chemo too...but the stayed stable during chemo and didn't shrink like others did - so they were now saying I was likely stage 4 because that meant cancer had metastasized away from the original site (which they were assuming was right due to the axilla). So....we booked neck node biopsy and for 6 long weeks I got ready to die!  Crazy I know...but that's how I felt at the time after being told stage 4.  In that time all docs agreed that the planned mast should be cancelled....because if spread no value in putting myself through the mast and reconstruction surgery.  But they did recommend rads still...so that was planned to start in Sept.  

But lo and behold - neck nodes came back negative!  So...restaged at 3c...although they said was very possible was 4 but chemo got it...so they said do rads now don't wait...then make decision about mastectomy later.  So I just finished 25 rads this week - yes, burning, peeling,open skin and fatigue but still much better than chemo! I'm done - yay!

Whew...that's my past year in a nutshell.  So next steps for me is rescanning CTs and Bone Scan over the next couple of weeks to see if there's anything rearing its ugly head....then I need to make a decision (again) about mast/reconstruction once my rad burns heal.

I can relate to your questioning about about neoadjuvant - I still wonder if I should have had mastectomy at the beginning - like you - and would they have found it.  Are you happy that they did?  I can tell you as I'm sure you've read that the good thing for us TN gals is that chemo seems to work well for us....and the docs believe my neck nodes (and others) did respond to my regimen  - which is very similar to yours.  Will you be able to have another PET?  Will that give you some comfort if clear?  We don't have TNBC specialists here...but my treatment was with one of Canada's best cancer hospitals - Princess Margaret.  So while I was very active and challenged my docs during my treatment - in the end they have always ended up being right I think...so I have learned to trust them more. If you trust your docs....it helps.

Please stay in touch on this great site so we can follow you...and selfishly for me because I need an occult buddy!  I don't post often but read almost every day....good luck with the rest of your treatment....

Welcome Lululani and aloha to you, too!

Pamdo - nice to see you back on this thread. Looks like you and I are both approaching the one year anniversary of our diagnosis this week.

I hope everyone is having a nice relaxing Sunday. 

Eileen:  Hi there!  Sorry to hear you are down.  My chemo blues come and go but waiting for godot LOL--that pretty much sums up watching our hair grow, doesn't it.  Even though I have 7 months of hair growth, I still  long to have "myself" back, and the truth is, cancer kicked my but and I am exhausted from it all.  I love that we now have a beautiful picture of Sugar encouraging us on our hair growing path.  We are neighbors--where did you go for treatment?

MBJ, I live in the West Valley so I treat in West Hills, although I had my surgery at Providence Tarzana. My onc is Stanley Rossman and he's a fabulous human being. Really cares about his patients.

Re the exhaustion, my onc tells me that for every month you treat, also including surgery and radiation, it's takes that many months to feel yourself again. It's gradual until one day you realize that you have you back. I'm so glad he said that because otherwise, I'd probably drive myself crazy wondering why it was taking so long. When I get my last chemo on Thurs., I'm going to ask them to add a huge dose of Patience, 1000 mg., to the chemo bag.