Newly diagnosed triple negative most current treatments.

Hello,

This is my 1st post &not sure how to make a long story short, but I'll try. I was diagnosed with ILC on 9/22/11. I was told at that medical facility (ranked top 5 cancer centers in the nation) that the tumor was 2cm & there were atleast 10-15 other areas near or on my chest wall that were very suspicious for malignancy. They advised immediate consult with medical oncology & radiation oncology & surgeon. This facility was very far from my home & my children asked me to switch to another facility (also ranked top 5 in the nation) closer to them. I met with the surgeon oncologist there who said I would only need surgery. On 10/19/11 I had L side masectomy with immediate reconstruction (tissue expancer). Pathology showed ER+PR+Her2- & invasive carcinoma at the deep margin. My surgeon told me not to worry about the deep margin & med. oncologist recommended Tamoxifen. No radiation therapy.



I wanted to wait until after my reconstruction for permanent implant to start the hormone therapy. I completed reconstuction surgery on 2-8-12. But I could not stop the nagging feeling that I had a path. report that said I still had invasive carcinoma at the deep margin!!??!!



So. off to the top cancer facility in the country for another opinion. YES, you do need radiation therapy & we would like our pathology department to test all tumor tissue samples again. After redoing the tests 3 times, I am Triple Negative not ER,PR+ as I ws told.



I will complete my 7 weeks of radiation this Thursday, Yeah!!! But, my one question to you ladies is that my medical oncologist is not recommending Chemotherapy. She said it has been too long from the surgery & also because I was only a Stage1c ILC.



This is my second go round with breast cancer. In 2003 I had lumpectomy followed by mastectomy for DCIS (no chemo or radiation).



I would love to know if there is any other TNBC lady out there with a similar situation regarding NO CHEMO. Throughout this whole orderal, I have learned 1 very important thing: BE YOUR OWN PATIENT ADVOCATE!! I love the facility & doctors where I am at, but can't help the little nagging question, "NO chemo"???? Are you sure???



Any responses or advice would be greatly appreciated. Sorry for the lengtly post
Diagnosis 9/22/11, Age 56, ILC 2cm Gr2, 0/4nodes,ER-PR-HER2-, Surgery 10/19/11 Mastectomy

cityfarmgirl: There is a prominent study from a while back that showed that chemotherapy given more than 12 weeks post surgery was not as effective as when given within that time frame. However, I'm not sure how quickly the efectiveness dropped off after that.... and whether 6 months post-surgery would be without any value. I think the group was simply divided arbitrarily into less than 12 weeks and more than 12 weeks... and their outcomes followed. You could get another MO's opinion to put your mind at rest. Generally, a stage 1 may not warrant chemo, but in the case of TN, chemo is often given no matter what the stage because it's the only systemic weapon we have at our disposal. Still, you will find some women on these boards who were early stage and didn't do chemo. 

I was diagnosed with Triple Negative BC in April 2012. The lump was almost 2 cm. Being labelled aggressive....The Dr decided on a lumpectomy within a couple of weeks and to start chemo after 3 weeks.

Now I am on my chemo treatment. 3 down and 3 to go. After that I will be doing 6 weeks of radiation........

Fingers crossed all will be OK.... 

Hello Ladies! glad your all here... but NOT glad & I'm sure you know what I mean. thank god for support groups! I'm in Fraser Valley, (maple ridge) BC Canada (for you US folks.. this is about 30mins to Bellingham,WA border)

okay, so BMX June 14/12, TN IDC S1 N0 M0 G3 took me a while to learn all that! 

surgery = June 14 (4 trips to the ER since.. and here I am again).  at no time has my sureon (bs) said anything about testing or chemo prior. I've not even met my Onc yet (is there initials for that?) my 1st results read: ER weakly positive (1/3), PR -, HER2 -, but surgeon said NO positives about it, it is TN. I have a long horrid story but won't get into that.

I faithfully had US/Mamo's each year, my Mom passed in 4/10 and then I also became a foster parent, and brain went on hiatus.. and I forgot to get tested for 2 yrs... however, I checked monthly, and am fibrocystic, so tried to really keep a firm check.  March nothing, then near end April I went to scratch my breast & wham!! what the heck is THIS LUMP?? it was quite close to the surface, so no way at all I missed it. I could feel that it was an odd shape. At the time I was going through skin cancer, my GP said.. oh I don't think this lump is anything, wait a couple/three weeks, then a few days later I thought.. well, what am I waiting for? duh!  so you know the next step.. results on May 10th, Surgery June 14th (was supposed to be the 7th, but I bumped it due to my special needs foster teen graduating-big deal!! whew) 

I originally was told I could have lumpectomy & radiation, until meeting the surgeon, I could'nt do Rad's due to my RA & COPD, so opted to have BMX. they sent me home from hospital with 38.5c temp/18.5 white count & elevated neutrophils (infection) no antibiotics (never in 10 surgeries have I NOT taken antibiotics) so then came my journey of 2 incisions turning into 2 9"wx6"hx2"depth cavaties. major staph infection, 3 trips to the ER, 1 resulting in 6 days on IV Antibiotics, came home on major strong pills, but alas, not good enough for this gal I guess, back to ER tonight for the strong IV antibiotics again, now am outpatient.

(yes I"m totally angry at surgeon & my GP) I should NOT be going through this part. now will take 6-10months for healing using a special VAC-dressing (has vacuumm attached.. yes I'll ask if it does shag or floors) this heals at a rate of about 1cm a week. There is NO lymphnode involvement YIPPEE! however, my treatment will be put on hold until this infection/healing is done. so am looking at waiting for quite a few months to a year....with TN.. where on earth does this leave me????

I'm to meet the oncologist in the next week or 2 and have many  questions, but who here likes to wait!!!???

What category am I in, as in is this a more than norm cancer type? does it come back , and back , and back? I'm getting little bits of info on here, but just not enough.. and I know you all here probably have way more answers than google.

my BS said she thinks the Onc will put me on 'pills' & not 'chemo'.. what PILLS are these, i'm lost. will they be like taking chemo? what are SE's? I gather that TN is one of the top aggressive types (HER being the top?), i read a bit about reacurrances, where? I have poor lungs, & there was already talk prior to BC about looking for early signs of lung cancer. does the TN go to weak spots or does it return to the breast?

Any light you can shed onto what my DX means would be awesome! I'm the 1st one in family to get BC, so BS said NO I don't get the genetic testing (2 grown daughters). 

 ( a woman in another group said my 'weakly positive' puts me out of TN, but as I said, my BS said no, I'm definitely TN.

thanks so much for your reading this long thing.. and hope I can be supportive also.

Cher 

Thanks Luah! I sure did ramble on didn't i? I call it 'morphene babble'. lol I put my dx a tad wrong.

it's stage 1, Grade 3, IDC, N 0/4, M 0,  my surgeon (who works closely with the Onc) states it is definitely TN,  the 'ER is too weak to be positive' she stated. she said that most likely the Onc will give me pills instead of chemo. however, not sure I put this in my previous post. due to the 'wounds & staph infection' I will NOT be able to do any treatment, whether pills or chemo, until the wound is healed. est time is 6-12months. so now I'm pretty chocked that my treatment is postphoned and it's NOT my choice.

Yes, I can hardly wait to meet the Onc, and have many questions answered. but thought perhaps someone on here maybe able to shed some light on all this.

Dusterella - So good to hear that you are doing so well. Are you able to sleep on either of your sides? Do you have any restrictions about lifting, etc on your non-cancer side?  

I haven't made my decision about mastectomy yet but I do know, like you, that I would not do reconstruction. I've just been through enough and don't want any more procedures. Thanks for the suggestion about yoga. I've never done it but have heard it would be quite calming for me. LOL about your mom and yoga. And good for my arm, I had 15 lymph nodes removed and have alot of nerve pain in that arm. Heard swimming would be good, too. One of the things that concerns me about a mastectomy is putting any more stress on that side of my body and ending up with lympedema.   

LUAH.. I must've missed your great post until now. thank you. answered so many of my questions.(tumor was 1.5cm) I see BS on Tuesday. I'm mixed feelings about that. as long story. anyways, I've not gotten my appt with Onc yet. I guess I'll learn more about that then. I did read that I think it was an hour a day of walking is great. I have other illnesses that hinder excersizing, but hopefully I can get this accoplished. I've been on low fat diet most my life, but still ate terrible. I've started the changes & mainly to work with this wound. high protien & low fat etc...I'm glad to hear about the yearliy rates. I think I read so much I may get things mixed up at times.

btw.. I see Infectious Control Doc in the morning. hoping he has something good to say. & I've my picc line in & ready to go for home IV therapy. all the medical staff has said 6-12mths for wound healing. but not to get too excited about the 6mth part. 

ps.. thinking about you all! 

Hi. I am 32. Mother of two kids. Undergoing NACT. 3 chemos (CEF) already done, after 4th one, will go for surgery. Breast lump has disappeared but underarm lump is still there, though reduced in size.

Dont know how long will the ordeal continue. 

Just was dx with local recurrence 6/18 after 12 years remission. Same breast. I had chemo and rads in ny slain Kettering in 2000

Dusterella

I agree with you. I do not want to do this again in a few years so I decided a double mastectomy. I know that does not make it a promise. I will also do what ever I need to do to lessen the odds. My life is the most important thing not my breast.

CoyoteNV: Just wondering where you heard about the 10X greater risk of recurrence in other breast? I have never seen that stat and I try to keep up with all the TN research. I mention it because there is a lot of scary (and, unfortunately, inaccurate) information floating around about TN. It's interesting to me that many breast surgeons who specialize in TN do not consider hormone status as a medical factor in choosing Mx (though there may be other reasons). BRCA+ does have a high risk of recurrence - but not all TNs (or even most) are BRCA+. Have you been tested for that? 

Thanks for pointing that out. I haven't seen the original research which I will hunt up, but according to that article, TNs are 3X more likely to recur in second breast than those with ER+. (It doesn't say just what the odds of that are, however.) The 10X is in reference to the fact that if you were initially TN, IF you recur, you will most likely be TN again, the second time around. The article talks about the need for vigilant screening...and discussing treatment options with your doc... Good luck in your research and treatment decisions.

Luah: Thank you! Thank you! Thank you for correcting my reading error! You cannot believe how much better that makes me feel. 3x vs 10x is huge.  There is so much research type information out there, that it is mind boggling.  I'll know more this week about my situation because I have appointments and consultations every day. TY again.

Not to worry you - but many TNs find lumps that seem to appear very quickly.