Best advice for Grade 3 Triple Negative Breast Cancer?

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EdM
EdM Member Posts: 8

Hi, I'm looking for any insights into what is the best advice people can give for my wife who was recently diagnosed with Grade 3, Triple Negative breast cancer.  The lump is about 2.5 cm in diameter and it does not appear to have invaded any lymph nodes.  So this is "probably" stage 2 cancer.  She is scheduled for a full body PET-CT scan this coming week and the results of the BRCA test will be in this week also.  She has completed all other tests.  She is also meeting for the first time with a chemotherapist this coming week.  She already has a good breast cancer surgeon.

My main concern is that things are taking so long.  We've been doing tests now for about a month and so far she has not received any treatment at all, either chemotherapy, surgery, or radiation; even though this form of breast cancer is extremely aggressive.  I expect this coming week will be the last week for tests and she will (hopefully) start receiving some treatment the following week (starting June 17). 

The doctors have talked about doing chemo first before any surgery.  This will allow them to pin down the best chemo treatment while there is still a tumor to measure.  Does anyone have any opinion on that option?

What would you recommend we do now to best save my wife's life?  I feel totally lost at this point.

Thank you,

Ed

Comments

  • Youngwithbc
    Youngwithbc Member Posts: 167
    edited June 2013

    Hi Ed,

    Sorry you are going through this. I can tell you from my experience that the beginning is the worst, when you are doing tests and waiting for some sort of plan. If you are happy with her surgical oncologist, then I'm sure he is doing everything properly. Sometimes it takes a bit of time at the beginning. If they were worried that it needed to be taken care of this very second, they would be doing it. But that's not usually the case. A few weeks typically does not affect anything and it's better to know all the options and figure out the proper treatment plan than rush. So that's probably what they are doing. I think it was about 6 weeks until I had my initial surgery, from the date I first met with the surgeon. But I would express any concerns you have when you have your next appointment with one of the doctors. They should be able to answer any questions and give you explanations for everything they are thinking.

    Chemo before surgery (neo-adjuvant) is often done when the tumour is larger, to help shrink it down before surgical removal. I can't say what the criteria is for deciding that so probably best to discuss that with the oncological team. I had my surgery prior to chemo, so I can't really comment too much on that.

    Best of luck to you and your wife. If she has more questions, these boards are defintiely a great resource.

  • Luah
    Luah Member Posts: 1,541
    edited June 2013

    Ed: I agree with Young... You and your wife are at the worst stage (aside from diagnosis), playing a bit of a waiting game until all tests are done and a treatment plan is clear. You can expect things to move pretty fast once a plan is in place.  (For me, it was 3 weeks from finding the lump to diagnosis, and another 4 weeks after that until surgery; I had 2 tumours.)

    Neoadjuvent chemo is becoming more common, especially with triple negative BC, because it does allow an oncologist to see if the regimen is working or not. And since chemo is the only systemic weapon for TN, that can be very valuable information. Several ladies on these boards have done chemo first.  It's certainly worth considering... ask lots of questions of the docs. 

  • KSteve
    KSteve Member Posts: 486
    edited June 2013

    Ed - A diagnosis like this really takes the wind out of your sails at the beginning.  Reading your message brought me back to the beginning of my journey.  As the others have said, this is, without a doubt, the scariest part.  I did have chemo first (neoadjuvent).  As my oncologist explained, it attacks the cancer cells that are in your body before they can "set up shop" anywhere else.  It also gives the doctors a chance to see if the standard protocal of chemo drugs is effective on your wife's tumor.  In my case, with just one chemo treatment, the tumor started to shrink.  I had a much larger tumor than your wife's (and involved lymph nodes) and I had no evidence of disease in my breast tissue or lymph nodes at the completion of my chemo. Hang in there, and feel free to ask any questions along the way.  Just keep putting one foot in front of the other, and you will find yourselves on this end of things before you know it. 

    Kathy

    p.s.  My husband was my biggest supporter and I know I couldn't have been so successful with everything without him by my side.  I'm so happy for your wife that she has you to be active part of her recovery.  You will be more instrumental than you probably realize at this point.  Don't forget to be good to yourself through this journey too.  This is something you're tackling together.  :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    I'm not 3N, but friends who are have gotten their best information from The Triple Negative Breast Cancer Foundation:

    http://www.tnbcfoundation.org/

  • Una2008
    Una2008 Member Posts: 35
    edited June 2013

    Hi all...this is my firtst time posting anything.  I have just been reading.  I just turned 38 and was diagnosed with TNBC stage IIB.  I only now realise how little I have known about breast cancer.  I didn't even know that there was something called triple negative.  I started neoadjuvant chemo last week.  I am doing weekly Taxol.  I am scared though.  I had a long journey so far.  I had five different doctors tell me that I don't have cancer and I should not worry.  I had several ultrasounds and mammograms that showed a mass with no malignant characteristics.  I had a fine needle aspiration that came back normal.  I just kept at it because my lump was growing really fast and it was painful.  My BS did an excisional biopsy and that came back positive.

    I am scared.

  • KSteve
    KSteve Member Posts: 486
    edited June 2013

    Una2008 - It's very understandable that you're scared right now.  As you progress in your treatments, the fear will slowly go away.  Good for you for continuing to pursue it when you had so many doctors telling you not to worry.  That's one of the biggest lessons I learned on my journey was that I am my own best advocate.  Just take it one day at a time.  Please let me know if you have any questions at all along the way.

    Hugs,

    Kathy

  • EdM
    EdM Member Posts: 8
    edited June 2013

    Thanks.  We do appear to have a very good doctor.  I am also arranging to have my wife get second opinions from the Moffitt cancer center in Tampa.  Together I think they will do the best they can.

    Ed

  • EdM
    EdM Member Posts: 8
    edited June 2013

    Thanks Kathy, That's very encouraging.  We had to wait a lot longer to get a first appointment but things seem to be moving faster now.  It's good to hear that chemo before surgery worked so well for you.  I think that is what they are leaning toward for my wife as well.

    Ed

  • BikerLee
    BikerLee Member Posts: 355
    edited June 2013

    Good afternoon:

    I had chemo first, and I had the best possible outcome - a complete pathological response. That means that there were no detectable cancer cells after chemo was completed.  That improves longterm recurrence-free survival probability by a ton!

    Some stuff I've read recently indicates that carboplatin in combination with the taxol / taxotere chemotherapy is particularly effective with triple negative tumors.  I was in a clinical trial (called ISPY2), and I received that combination plus an experimental drug for 12 cycles. Then, I had four cycles of AC.  Chemo was hard but manageable.

    After about three weeks, I then had a double mastectomy (I choose to skip recon).

    I'm coming up on two years since diagnosis, and so far, I remain NED - that is, no evidence of disease.

    I hope that helps.  And above posters are totally right - this time is the hardest time - all the unknowns... Once treatment begins, things will get a bit easier...

    Good luck.

    Lee

    PS - my better half was also my biggest supporter... made everything better.

  • EdM
    EdM Member Posts: 8
    edited June 2013

    Thanks SunflowersMA, I didn't know that organization existed.  I'll study their website.

    Ed

  • Una2008
    Una2008 Member Posts: 35
    edited June 2013

    Thanks Kathy....your post was inspirational to me....you would not believe how much it means.  I thought I was alone in this war until I came here and so all these brave strong women.  It gave me hope and strength.  

  • algranna
    algranna Member Posts: 61
    edited June 2013

    I have stage 3 Breast Cancer.  The mass is too large to remove until it shrinks.  I have had 3 chemo treatments and have 13 more to go. My question is:  I had four lynph nodes removed with 2 being positive. I had trouble with fluid build up and he needle drained it for two weeks and then had to have a drain put in for two weeks. That delayed starting my chemo. Anyway I now have a blister that has come up on my underarm at the lymph node incision site.  Anone else had this?  I do not want to go back to the surgeon as I am afraid he will stop my chemo.

  • EdM
    EdM Member Posts: 8
    edited June 2013

    Thanks Lee.  That is very encouraging information.  I've printed your note and will bring it up with our chemotherapist when we meet her on Thursday.

    Ed

  • leecy5
    leecy5 Member Posts: 14
    edited June 2013

    I started w a 14.5 cm tumor, triple negative. Did 6 TAC treatments. I had ZERO tumor when i went in for my Bilateral mastectomy last week! None! My lymph nodes were also negative! Amazing!!! Chemo is your beat friend for Triple negative! Im soooo glad I took it first!!!

  • sweetpickle
    sweetpickle Member Posts: 749
    edited June 2013

    Hi Ed,



    Like others have said you are in one of the hardest parts of this journey which is deciding which treatment is best for your wife. I am triple neg and brca1 positive and I also had a complete patholgical response to the neoadju. Chemo we did. Pick a doctor that you trust and follow their advice. I chose a doctor that had a lot of experience with triple neg patients.



    Good luck to you and your wife, my DH has been the greatest supporter and I couldnt have done this journey without him. Your wife will need you a lot during this.

  • Una2008
    Una2008 Member Posts: 35
    edited June 2013

    I was just wondering, has nayone here had to stop neoadjuvant chemo and proceed to surgery?  My oncologist and BS decided that after my third infusion of weekly Taxol.  My cancer is actually not a lump but a cyst and it just keeps filling with fluid and getting bigger.

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited June 2013

    Just popping in, one of my bffs who i met on here is five years out from triple neg in the nodes... she did chemo first then sugery :) 

  • fireagate
    fireagate Member Posts: 5
    edited June 2013

    Hi Ed,

    I have triple neg. I was told possibly stage 3 last Friday. All three oncologist that I have spoken with have highly recommended chemo first.

    The waiting has been hard for me also. My testing started with the mammogram on May 2nd. I was suppose to start chemo last week however I was not completely comfortable with that cancer center and so made appointments to talk with two other places. The second is asking for an additional ct and bone scan (I have already had a ct/pet)...thus more testing, but I could start chemo with them next week.

    The third oncologist mentioned that I am eligible for ispy2 clinical trial and highly recommends it. If I choose this she said it may take an additional 10 days or so to complete that additional testing and start chemo. so possibly more waiting. :-(

  • bzibea
    bzibea Member Posts: 1
    edited June 2013

    Hello All, my name is Deborah and I am posting on behalf of my sister Barbara.  Barbara is my 75 year old widowed sister.  She has been recently diagnosed with triple negative stage 4 metastatic breast cancer.  Following her PET scan, the cancer is showing in her lungs and bones.  The oncologist gives her a year with chemo, months without.  She also has Type 2 diabetes.  She is scheduled to have the mediport placed on Monday with chemo beginning on Tuesday.  I am her primary caregiver and I'm feeling very inadequate to know how to help her through the chemo and helping her control her diabetes at the same time.  I have so many questions I don't know where to start.....

  • susanella
    susanella Member Posts: 47
    edited June 2013

    Hi all,

    I was TN Grade 3 with a 1.9 cm tumor with 1 positive SN and 1 positive intramammary gland both with micromets (Stage IIa).  I had a lumpectomy and re-excision (clean margins) in Oct. 2011, followed by ACT, 25 rads, and 5 boosts.   I am very concerned since I never had a PET scan.  When I asked my BS about getting a PET scan, she discouraged me.  As it turns out, I was diagnosed with Stage I uterine cancer in Sept. 2012 (no lymph node involvement) and had a complete hysterectomy in Nov. 2012.  Maybe if I had had a PET scan before or after my BC surgery I would have found the uterine cancer even earlier.  Now I am worried that maybe there is something else my drs. missed.  Does anyone have any thoughts on when a PET scan should be ordered?  I seem to be one of the few BC patient who never had one.  Thanks.

    Susanella

  • encyclias
    encyclias Member Posts: 302
    edited June 2013

    Deborah, I have Type 2 diabetes.  I went to see my GP just before I started chemo.  He has taken care of my diabetes for several years.  Also, his wife is a breast cancer survivor so he has first-hand insights.

    He stressed that he didn't want me losing any weight.  His recommendation was to take my pills but to eat what I felt like eating.  As he said, a few months off my diabetic diet isn't going to do any permanent harm.  As an example, he said I could have that slice of apple pie I have craved so much, but "don't eat the WHOLE pie."  He also recommended those nutritional drinks like Boost sugar free, the kind the hospitals give to patients who aren't eating well (darn, the chocolate one is good!).

    Perhaps an appointment with the doctor who monitors your sister's diabetes is in order. 

  • anamerty
    anamerty Member Posts: 195
    edited June 2013

    Susanella when I was dx with 1.8cm tn bc I had a double mast and chemo I wasnt given any scans either just blood work and chest xray they assumed I was stage 1 grade 3 , well 4 months after surgery and 8 days after 3rd chemo I developed pneumonia from the chemo ended up in hosp for 2 weeks and they did ct scans for the pneumonia.it was then that they saw a spot on my rib so followed it with another ct scan 2 weeks later saw the spot still but they thought it had shrunk a bit after a follow up bone scan which showed nothing they waited til march to see if any progression no none but same size as it was they assume its mets as it had shrunk but as they said I had not had any scans when dx with bc so they are not sure if this was there before so have nothing to compare the area is so small or was as of march that they dont want a bone biopsy because not too acurate due to its size and that further scans would just evoke anxiety so they want to wait to see if I get pain in that area its now a wait and see .it isnt standard here to get a bunch of scans if you are initially dx with stage 1 but I wish that they had done them because without them nobody really knows if I had a spot before or not so I am anxious all the time now

  • Liz1973
    Liz1973 Member Posts: 18
    edited June 2013

    Although my TNBC was very small, I just had my BMX last Thursday and my nodes were negative and I just found out that on my pathology report there was NO cancer in my breasts that were removed! I had even waited 2 months before surgery because a change in my mind to do mastectomy rather than lumpectomy, so I thought it might grow some by the time of surgery. I feel it was no longer there in part because of my radical health/ lifestyle changes that I made. I cut out most sugar, most alcohol (very occasional glass of Moscato), processed foods, red meat only once/ week and LOTS of fruits and veggies, organic milk and chicken, and more fish. I did shakes with ReLive products and quite frankly was feeling wonderful before surgery. I had many people praying for me and I did a lot of praying myself. I also got myself back to exercising 5 days a week, 30-60 minutes per time. So, to get the news that they didn't find any was soooo encouraging. My Oncologist said that I do not need chemo. My plan is to continue on my healthy lifestyle to keep "C" from rearing its ugly head anywhere else in my body! Keep up your fight ladies, and do everything healthy that you can for yourself, you'll feel so much better too! Xoxo - Liz. Ps, another good side effect is that my husband and 2 young girls are eating healthier too!

  • lmcclure4477
    lmcclure4477 Member Posts: 180
    edited June 2013

    Liz1973: your story is amazing and gives me so much hope! I had triple negative IDC with tumor size 1.1. Lymph nodes were clear. I had to do chemo for 4 months. I have made the same lifestyle changes as you have so it gives me hope that it won't come back!! So you had no tumor whatsoever at your surgery??

  • CSsister
    CSsister Member Posts: 1
    edited July 2013

    Hi, I am Renee. My sister (age 46) was diagnosed several months ago with triple negative breast cancer. She is having the chemo first, and she has one treatment left to go. Yesterday she met with the surgeon, and now has to make the difficult decision regarding lumpectomy or mastectomy. The surgeon is ok with either choice, but says she will need radiation no matter what because there is lymph node involvement.  She is very distraught because at the beginning the surgeon said he "liked to save as much of the breast tissue as possible" and was leaning toward lumpectomy. Now he seems to have changed his tune, but he won't come out and say what he thinks she should do. He just says "it's a very personal choice" and says it is up to her.  When he told her she would need radiation either way, he added "you know, this is a very bad type of cancer". He also told her (for the first time!) that there was a 2nd small tumor "adjacent" to the first tumor (which we thought was the ONLY tumor!) However, she seems to be responding to the chemo well. The tumors have shrunk quite a bit. Still, the things he said yesterday felt a bit ominous. I am so worried about her that I have not been able to sleep last night or tonight (which is why I am posting at 3 am).  I would REALLY appreciate some advice and/or perspective from you ladies who have been in her shoes. Thanks!!!

  • Una2008
    Una2008 Member Posts: 35
    edited July 2013

    CSsister...I am so sorry to hear about your sister.  The surgeon is right though, the choice between lumpectomy or mastectomy is a very personal on.  He is also correct that this is a "very bad type of cancer".  I just turned 38 and was diagnosed with triple negative breast cancer, I have seen how aggressive my tumor was behaving....they took it out and it came back in two months.  I was scared so the decision to have a mastectomy was difficult but the fear of the cancer was greater.  I am opting to also have a prophylactic mastectomy on the left side too.  

    Its not easy for any woman to lose a breast.  I also know that nothing I can say would make the decision easier, but I just wanted to share my personal experience.

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