Treatment for Triple Negative and very small tumor

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MS1
MS1 Member Posts: 1

I am diagnosed with triple negative cancer, tumor size 2.0 mm, and have nodes -ve.  I had mastectomy 2 months ago.  I have conflicting recommendation from 3 oncologists to get Chemotherapy or not for my situation.  Any one who has similar diagnostics and what was their recommendation for Chemo?

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited February 2011

    Hi MS1:

    First of all hugs~!!! Sorry you have to make this decision.

    I am TN too and the standard of care is chemo. My tumor was 1.2 cm and I took 6 rounds of Cytoxin and Taxtoere(?). I know the choice is personal but I would struggle and go through the chemo to give yourself as much protection as possible.

    Good Luck...

  • lrr4993
    lrr4993 Member Posts: 937
    edited February 2011

    Just for clarification 2mm, not 2 cm, right?  Just making sure that is not a typo.  I have never heard of a 2mm tumor - that is very very small.  I did not have this diagnosis (mine was just under 2 cm), but I think I would question chemotherapy at that size.  That is not to say there is no risk - I am sure there is a possibility of spread with 2mm, but I would expect that risk to be small.  Have you asked the doctors you are speaking with to explain why they have the opinions that they have?  In my limited experience, they can usually quote you some statistics regarding risk and relative improvement of risk with or without chemo.

    eta:  If you google "cancer math" you will find a site that allows you to plug in certain information about your tumor to find out what your risks are in terms of overall survival with and without chemo.  I would bet money that your risk is quite low either way and that chemo is not going to significantly improve your risk.  

    I hate to sound like I am talking you out of chemo.  I did it and found it surprisingly easy.  But I would not do it unless there was some measurable benefit to me. 

  • char123
    char123 Member Posts: 82
    edited February 2011

    Hi MS1:  Sorry this happened to you, but good to hear your tumor is small. I am sure you have been told chemo works well for TN..If I had a TN breast cancer, I would do chemo. if I had a very small tumor that was ER/PR+.  I would not..Best of Luck to you!

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2011

    MS1 - mine was small but was a bit larger than your's (3.5mm).  I did chemo - Taxotere/Cytoxan x4 and then radiation because I had a lumpectomy.  I was surprised when I was offered chemo but didn't feel comfortable turning it down given my age (45 at the time) and the fact that I have a young daughter.

  • SusanHG
    SusanHG Member Posts: 655
    edited February 2011

    Hello, I recently joined and was about to post this very question, since I am having a hard time making a decision.  I  am 42 years old and I had a lumpectomy on Jan.20, 2011 for what they thought was an area of DCIS (from stereotactic biopsy), first seen as calcifications on a mammogram.  When the pathology came back, it was 90% DCIS with a very small tumor of 3 mm of Triple Negative invasive ductal carcinoma.  My surgeon left it up to me to decide what to do next.  There were positive margins on 3 sides (<1 mm) so I need a re-excision or mastectomy.  I have pretty much decided to go with the re-excision (after cancelling my surgery date for mastectomy) and would then have 7 weeks radiation with a boost at the end.  We had went for a second opinion at Roswell Park Cancer Institute and they were astonished that I would want to lose my breast for such a small tumor and negative genetic testing.  It was my surgeon who made it seem like it would be risky (and my oncologist kept suggesting bilateral mastectomy), but I would actually feel safer to have the radiation than not, which brings me to the chemo question.  My first oncologist gave me the figures for a 1 cm tumor which were 20% relapse after 10 years (80% cancer free), 7 people helped by chemotherapy.  She then decided to send me to the cancer institute (I'm guessing because she specializes in Hematology?).  Two oncologists there said this small of a tumor would not warrant even consideration for chemotherapy because the risk would far outweigh the benefit (I could have permanent heart, nerve, or bladder damage) and if I would have a local recurrence (which would be more likely) I couldn't have this same chemo again because the body remembers it. I guess a 1 cm. tumor is a whole different ballgame, and she should not have been using this information for my case (and she is a friend of a friend too).  Another thing they found was my pathology was wrong.  The original pathology was grade 3, but when their breast cancer pathologist redid it, it came out grade 2!  Thank you Irr4993.  I checked out Cancer Math and the information kind of agreed with what I was told.  The risk for dying of other causes in 15 years is greater than the risk of my dying of breast cancer.  I am going in for another appointment with an oncologist there to find out more and then having a third opinion at another reputable breast center.  Anyone else run into this same issue out there?  I'd love to hear about it.  Thanks for listening...

    Oh and btw for anyone going through the beginnings of treatment, get at least two, if not three, opinions! You mayget more confused, but it will give some peace of mind.

  • Luah
    Luah Member Posts: 1,541
    edited February 2011

    I have read that with triple negative a distant recurrence is more likely to show up first than a local one. http://clincancerres.aacrjournals.org/content/13/15/4429.full#T1  Hence the reason to hit it hard at the outset.  You may want to ask your onc about that, even so a 3 mm invasive component is extremely small.

  • SusanHG
    SusanHG Member Posts: 655
    edited February 2011

    Thank you, Luah.  I had come across this article, but upon rereading it, it clarified a few things.  I guess the big question for me to find out is whether a tumor of 3 mm. is at risk for distant recurrence.  I had negative nodes.  It sounds like it is very difficult to detect a tumor of my size, and in my case this is what happened.  They only detected my DCIS.  I think maybe they feel a tumor of my size may have such a slim chance at metastasis that in my case, a local recurrence is statistically more likely (I believe I read 14% for local in the article).  I definitely need to speak to more doctors!

  • SusanHG
    SusanHG Member Posts: 655
    edited February 2011

    After spending the weekend doing intensive research (it helps that my husband works in the field of biomedical research and can access sites that most of us cannot), we found a very important document that lists every breast cancer guideline there is, about anything you wanted to know.  It is called the NCCN (National Clinical Cancer Network) Clinical Practice Guidelines in Oncology.  The answer to this particular problem is mapped out precisely in this report and is up to date for 2010.  For all triple negative, stage 1a tumors (microinvasive to 5 mm) chemostherapy is not recommended, for Stage 1b (6 mm-1 cm) chemotherapy is considered, and for Stage 1c, chemostherapy is suggested.  This document is also very useful in accessing any treatment plan for any type of cancer.

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2011

    SusanHG, Do you have a link for these guidelines or is it not accessible to public? Just wondering if the grade of tumor matters, especially if grade 3. Also wondering about the stages listed. I have been told I am 1A, based on a tumor smaller than 2 cm, with no node involvement. This matches what is listed on breastcancer.org website under "stages of breast cancer."   

    I will see two different oncologists for two opinions...one Wed and one Fri. Anxiety rising. Am trying to prepare for the chemo news. I 

  • SusanHG
    SusanHG Member Posts: 655
    edited February 2011

    Hello Huskerkkc.  I totally can relate to your anxiety!  My first onco said chemo, while Roswell Park Cancer Institute concurred quickly that my case wouldn't warrant chemo (3 mm. Grade 2).  I am going to have to get back to you on how to access this document.  My husband showed it to me yesterday, but not sure if he found it through something you can't access or if it is inaccessible to the public.  How big is your tumor?  The guide lines listed in my last post are accurate.  Recent research suggests that chemo may be affective for Stage 1b (6mm-1cm) but this is under debate so your oncologists will probably discuss the pros and cons of chemo with you.  My only suggestion is research as much as you can.  I may even go over to our university library to find if there are any studies dealing with Stage 1a.  BTW my first onco used the program AdjuvantOnline and it is flawed because it groups 1a and 1b together to get results.

    This was a very useful article for us:

    http://www.oncolink.org/resources/article.cfm?c=3&amp;s=8&amp;ss=23&amp;id=16448&amp;month=09&amp;year=2009&amp;sms_ss=email&amp;at_xt=4d61b6c8dd994e7b,0
     

  • SusanHG
    SusanHG Member Posts: 655
    edited February 2011

    Huskerkkc: Did you mean 2 cm or 2 mm?

  • Fighter_34
    Fighter_34 Member Posts: 834
    edited February 2011

    I couldn't access the link.

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2011

    The tumor was 1.9 cm, not mm. Diagnosis 1A. BC.org doesn't distinguish A & B stages at stage 1, although ACA does, and my surgeon did I guess. 

    I did not have the "credentials" to get on the website, although I found what you referred to. You're right, I am doing lots of research-probably more than I should-but it seems mostly to help. I will try your link as well. The oncologists will obviously shed light on my never-ending list of questions!

    I hope they will appreciate that I've done some homework and not be offended that I question what I've read. If so, I guess that will tell me something useful too!

    And Go, Fighter_34!! Celebrate! You have the same dx as I do, except for nodes. I was 0/3. Congrats. 

  • SusanHG
    SusanHG Member Posts: 655
    edited February 2011

    Fighter 34:  Sorry you couldn't access the link.  The article compares the effects of chemotherapy on stage 1 breast cancer Estrogen positive vs. Estrogen negative.  The recurrence and survival rates are lower even with chemo in both stage 1b and stage 1 c.  There was no recurrence in neither Stage 1a groups in this research study.

    Huskerkkc:  The NCCN is accessible to the public.  You just have to register (I just did).  If you'd like, I can e-mail you a pdf file of the guidelines.  They were very helpful for me in sorting out all the conflicting info I am getting.

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2011

    Thanks Susan...I will try to see if I can log in again. When I first tried it was asking my specialty, etc. Figured I had to be a doctor! But maybe I was not looking closely at other options. If not, I'll PM you and have you email it. 

    I am trying to get all my piles of paperwork in order. Had done it sporadically but with three appointments this week it is time to get serious I guess. Oncology #1 on Wed; Surgeon (just post-op visit) on Thu; Onc #3 on Friday. All in different towns, from 60-120 miles away. SIGH.

    Oh, and I am seeing a counselor prior to my surgeon visit. Husband insisted Tongue out and he is right. I'm a school counselor myself so I really should practice what I preach, so we'll see how that goes. I feel like I need it. But she is 120 miles away so that isn't gonna work for weekly support. Maybe phone follow-up? Anyone done that?  

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2011

    Oh. And did I happen to mention I've been down for 4 days with bacterial pneumonia-of-all-things?
    Not cancer or surgery-related (lumpectomy almost 3 wks ago), but more susceptible in my "stressed out" state of uncertainty. 

    But no more pity party. I do plenty of that by myself but would rather hear more of everyone else's hopefully good news. 

  • MsBliss
    MsBliss Member Posts: 536
    edited February 2011

    Do you mean you are 1C?  1.9 cm is at the top of limit for stage 1C, not 1A.

  • Titan
    Titan Member Posts: 2,956
    edited February 2011

    I'm very radical here..and maybe some people won't agree with me (and that is ok)..but I had a 1.8 cm tumor, no nodes and the ONC threw everything at me.

    Knowing what I know now..from reading on here and about some other tn's...I don't think I would care how small it was...throw everything you can at it...

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2011

    MsBliss...1A is what my surgeon wrote on my path report and what matches with the info on staging on this site and National Cancer Institute...tumor less than 2 cm and no node involvement. Where do you get the limits of 1C that you refer to? 

    Titan...I'm pretty sure chemo is in my future. Just trying to prepare myself and really understand my options. Onc visit tomorrow will be enlightening and hopefully not too depressing.

  • Titan
    Titan Member Posts: 2,956
    edited February 2011

    I'm sorry Husker...sometimes I have a hard time being "positive" about this triple negative cancer.

    My BS told me that I would probably have to have rads only...that was until it was determined that I was triple neg...then I went through lump/rads to lump/8 dd chemo/ and rads...it was a shock..I wasn't on here then..so you are doing a good job researching b-4 you see your onc...that way you won't be surprised!

  • TifJ
    TifJ Member Posts: 1,568
    edited February 2011

    I think Titan is right regarding chemo. I had 2 areas in right breast 1cm of IDC and .7cm of DCIS. My path report says 1b. I had  a mastectomy and four rounds of Taxotere and Cytoxan. I was told because of the triple negative there was no escaping the chemo whether I had a lumpectomy or mastectomy. If it helps any, chemo was not absolutely horrible for me.

    So sorry you are going through this, but will we will help you as much as we possibly can. I am 8 weeks Post Final Chemo.

    Tiffany

  • SusanHG
    SusanHG Member Posts: 655
    edited February 2011

    Huskerkkc:  So sorry to hear about your pneumonia.  It is so hard to deal with everything when well!

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited March 2011

    I finish my antibiotic Wed and see dr Thursday, so hopefully all is clear. Then I can schedule port placement and chemo. Tired of all the waiting! And coughing! And people asking at work-although I know they mean well.

  • Titan
    Titan Member Posts: 2,956
    edited March 2011

    Uh..tiff..the "F"..does not mean Final...ha ha

  • TifJ
    TifJ Member Posts: 1,568
    edited March 2011
    Titan- I can certainly think of a better word that starts with "F", but with all the deleting going on on some other threads, I thought I should be careful!!
  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited March 2011

    Saw all the doctor last Thursday and the lungs are clear, but antibiotics must continue for 2 more weeks. Still some sinus drainage and coughing. The antibiotic about gags me every time but it has been an effective appetite suppresant! But he says I'm okay for port surgery. They called Friday and that will be placed March 14. Still no word on when I start chemo, but I meet with the clinical trial nurse tomorrow (Mon). If I decide to go ahead with the trial, I will have Cytoxan and Taxol every two weeks for six cycles, dose dense. Will have pap Tuesday just to have that out of the way. I'm overdue on that and trying not to get too worried about one more exam that might show something in a different area of my already traumatized body.

    Tif, glad to hear you are post-chemo. It helps us all to hear from people that have all that behind them!  

  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2011

    Huskerkkc: 

    Ms. Bliss is correct.  I am triple neg - Stage 1c, grade 3, no nodes, no vascular and 1/2 cm nodule.

  • Titan
    Titan Member Posts: 2,956
    edited March 2011

    Ha Ha Tiff...funny stuff..but I can't think of any word more appropriate than the "f" word for chemo..(I don't mean to offend anyone here)..

    so  MS1..what has been going on with you..I'm assuming that some kind of decision has been made by now.

    And Husker..good luck with your port placement on 3/14..I would think chemo would start soon after..right?

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited March 2011

    Titan, 

    I have asked to start March 31 (I asked a week ago and still waiting for an answer!) because my 73 yr old mom is having knee replacement surgery on March 24 and I would like to be there. However, if they think I need to start sooner then I will do what they say, probably the 17th if I have to. Then the 24th would be my "off" week and I should be feeling okay. I should know more on Monday. I hope!   

  • SusanHG
    SusanHG Member Posts: 655
    edited March 2011

    Huskerkkc:  I love your picture.  It is perfect, I think, for all of us.  I wish you the best of luck for your chemo.  Glad your doing better with your pneumonia.  I am having a re-excision on Tuesday to see if I get clear margins (I was positive on two).  If not, then mastectomy.  If the re-excision goes well, i will start 7 weeks of rads at the end of April.  I have opted out of chemo after three opinions (I have 1-2 % chance for metastasis), unless of course they find more invasive cancer when they go back in.  Then it is chemo for me as well.  I have been advised to concentrate on reducing my weight down to the bottom of my weight range.  I have already lost 30 lbs. and will need to lose at least 30 more!  Also, need to eat 20% fat of less, which is proving to be extreme difficult since don't eat sugar either, but I will not complain!

    susan

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