Anyone have a micromet and NOT do chemo?

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Hi Everyone,

I'm trying to decide if I should do chemo or not.  Basics are 43 years old, ILC, Stage IIa, .5mm micromet in 1 node, 8 others clean.  Main tumor was only .7cm.  OncoType score 6.  Had a bilat mast a month ago.  Onc, BS, other surgical oncologist, and oncology nurse (4 separate reviews, not the same office) are all telling me chemo would be overkill.  I would agree if it wasn't for that darn micromet!  I'm looking for opinions...am I crazy to not do chemo with a micromet?

~jasminn

Comments

  • yellowrose
    yellowrose Member Posts: 886
    edited April 2009

    I had micromets and no chemo.  My onc left chemo up to me as I was in grey area for oncotype  (19) and grey area for size >1cm but <2cm.  The se's of chemo just weren't worth it to me. 

    In the end you have to decide for yourself.

  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited March 2009

    Hey Jasminn - just saw your post - what did you decide?  I'm waiting for my oncotype score (sent from Australia to USA at a cost of AUD$5,800 and no health care subsidy!!!!) and have isolated tumour cells in 2 nodes (only had senitinel node biopsy on 2 nodes) - they seem to think they got dislodged during surgery (had lumpectomy followed by bilateral mastectomy and immediate reconstruction).  Relaxed about Tamoxifen but don't want to do chemo. Interested to hear what you decided as I am with yellowrose on the side effects - not worth it if score is low or gray area. 

  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited March 2009

    Jasminn

    I had one node out of 11...did the chemo as I did not want to look back and worry....good luck.  Barb 

  • Jasminn
    Jasminn Member Posts: 51
    edited March 2009

    Helena - No chemo for me, and I hope it turns out to be the right decision.  Based on my Oncotype score, if I count the micromet as node pos, then chemo actually increases my mortality rate over 10 years due to SEs.  With micromet as node neg, chemo really didn't improve my chances hardly at all.  What's your Dx?  I think larger tumors may warrant chemo even with a low Oncotype score.  My tumor was only .7cm.  Tough decision - best of luck to you!  Keep me posted...

    Barb - that was my main concern...I wanted to do all that I could and not think I missed any chances to kill this stuff.  After 4 docs tried to talk me out of chemo though, I had to rethink.  Still trying to get total peace of mind from doing tamox and lupron.  Maybe someday...

  • Britt
    Britt Member Posts: 731
    edited March 2009

    Hi - I had a micromet in only ONE node out of 11 - and my Oncotype score is 12 - so I definitely opted for no chemo, with my oncologist's blessing and encouragement - she actually said, "No chemo for you - time to start radiation treatments!"  I feel this is the right decision for me.  My micromet was 0.2cm and there was no vascular invasion - also very clear margins from the excision of the tumor.  Also, Er & Pr were extremely high - Pr 98.7% - so in taking all of these facts into account, I felt that chemo would not be effective for my particular BC.  Again, this is a very personal decision for all of us in this situation.  I am 52 years old, unemployed, and looking for a job, so this shall be a lot easier for me than having to deal with a chemo schedule and all of the attendant side effects.  That is my situation, and falling into the low risk category of the Oncotype score was a blessing.

    Maria 

  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited April 2009

    Hey Jasmine, wow sorry for not getting back - hope you are still reading!!!  My dx was invasive Papillary cancer, 1.3cm, ER/PR+, HER-, Grade II, premenopausal (46years old), sentinal node biopsy with isolated tumor cells in both nodes (one less than 2mm and one less than .02mm), pathology says node negative.  Anyway.... guess what my oncotype came back as a 6!!  So low and hence did not do chemo.  Have been on tamoxifen for a month now and have had strange side effects, chills, mood swings, mouth ulcers, but I guess side effects show the stuff is working.  My 2nd opinion oncologist said the isolated tumour cells were probably there because of some vascular invasion due to the biopsy and lumpectomy. Tough call but I am so happy not to do chemo.  Love to hear how you are going.

  • Sukiann
    Sukiann Member Posts: 310
    edited April 2009

    Ok, I just went through this.  At first my micromet was .2 mm now after reviewing it again, they say .5 mm.  We are still waiting for the oncotype test (it was supposed to be ordered but the lab never sent it!) but my oncologist said that it doesn't matter, he said chemo.  He told me that since it is above the .2 mm I am now node positive and that warrants chemo.  I am kind of relieved as I feel like I am one of those people who's test results is going to be in the grey area and I would have had to make the decision myself.  It is a hard decision and I would have loved not to have to do the chemo but my tumor was also larger than all of yours (2.5 cm) so I think with that and the micromet I am doing the right thing.  Let's see if I agree when all the SEs of the chemo hit.  I'm scheduled to start on April 27th.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2009

    Sukiann, let us know what your score comes back. I've been watching you!

    Helena, you are the first other Papillary carcinoma I've seen! Hello! 

  • Sukiann
    Sukiann Member Posts: 310
    edited April 2009
    Ok, Barbe!  I'll let you know when I finally find out!  Smile
  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2009

    Crap. I just saw my written pathology report for the first time yesterday. I had 2 out of 13 nodes with micromets! I'm putting my signature as positive until I get a second opinion. I still say, the cancer tried to get out, what if some did and that's all that really left in the node? Even the nurse yesterday after my incision revision surgery said that I might have a primary somewhere else! Blew me away as that's what I've been saying all along.

    I'm not on any drugs, no chemo or rads, so I am nervous Surprised

  • Sukiann
    Sukiann Member Posts: 310
    edited April 2009

    Barbe, how big are the micromets?  Any micrscopic amount is too big for me not to do chemo.  Mine was above the 0.2 mm so it does make me node positive.  What did your oncologist say???

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2009

    I don't have an onc, remember me??? That's why I think I'm going to get a 2nd opinion.... 

  • Sukiann
    Sukiann Member Posts: 310
    edited April 2009
    Oh, that's right!  Maybe it is a good idea for a second opinion.  Let us know if you go. Smile
  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2009

    I'm getting a CT scan at the end of the month and a follow-up for this surgery around then. If anything shows up in either, I'm putting my foot down. 

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2009

    Barbe, hopefully your CT scan will be clean, but even if it is, you should insist on seeing an oncologist.  You have to be your own advocate here because there certainly seem to be questions about your diagnosis.  

    I recall that you mentioned that you weren't assigned to an oncologist because it was felt that your cancer was non-invasive.  However I know that you've been questioning this and because you had a positive intramammary lymph node, you've put yourself down as being Stage II.  Have you talked to your surgeon about this?   Given that you had this positive node, how did your surgeon explain that your cancer is non-invasive?  As you know, a positive intramammary lymph node is considered the same as any positive node, and that would move you up to stage II.  This isn't debatable - staging is very well defined and all staging should follow the exact same guidelines; there's no room for discretion.  And if you really are stage II, that pretty much always means chemo.  Additionally, you mentioned that your cancer was right up against the chest wall.  Do you know the margins?  If the margins were close, then radiation might be in order.  I'd also never realized that you hadn't seen your pathology report.  Now that you have, it raises even more questions.  Micromets to two nodes?  How large was the micromets?  If it was more than 0.2mm, then this reinforces that both chemo and radiation might be appropriate.  There are just too many questions about your diagnosis - and most are ones that an oncologist should be addressing, not your surgeon. 

    My suggestion is that you ask for a referral to an oncologist at Princess Margaret or Sunnybrook. Given the confusion about your diagnosis at the hospital where you are being treated, the 1 1/2 hour drive into Toronto to see an expert at a hospital that specializes in breast cancer seems well worth it.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2009

    Also, make sure it was micromets and not just a small amount of mets.  I had a small amount in one node and I remember that first year I kept telling myself it was micromets, but really it wasn't and my surgeon never used that word.  

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2009

    They used the word micro-mets. That's smaller than mets isn't it? They said they were in "clusters" and my sentinel node was very "hard". The report is at home, I'm at work. This is concerning me. I don't think they were too big, but I didn't even know there was 13 of them!!!!!!!!

    My initial path from the lumpectomy also said "with microinvasion", but that was probably from the biopsy wasn't it?

    I have to get my GP to refer me, but I'm waiting for my CT results so all records can be sent to Princess Margaret.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2009

    Barbe,

    Micro-mets is any amount of invasion that is greater than 0.2mm but not greater than 2mm.  Anything smaller than 0.2mm is considered incidental (i.e. node negative) and anything greater than 2mm is considered full mets to the node (rather than micro-mets).  So micro-mets is smaller than mets but it's still considered node positive.

    To your question, "My initial path from the lumpectomy also said "with microinvasion", but that was probably from the biopsy wasn't it?", no, it's more likely that it was not.  There can be cell displacement from a biopsy but this is rare, whereas microinvasions are less rare so the odds are always in favour of a real microinvasion.  And since you also had the positive intramammary node and now micro-mets to the two nodes, that all points to a legitimate microinvasion rather than a few incidental displaced cells. 

  • Britt
    Britt Member Posts: 731
    edited April 2009

    Beesie -

    Would you then categorize 2mm as "borderline" micromets or a "technical" micromet?  That was what was found in my sentinel node - all others clear (had the ALND).

    Oncotype scored as 12 - now on number 14 of rads . . . med onco quite adamant on no chemo -

    Forgive me, just sat through an 8 hour seminar on medical coding . . .

    Maria

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2009

    Barb I think it sounds like you are node-positive and proceed accordingly.  There are lots of us in that particular club but you do have to take it seriously.  If it were me, I would be assuming chemo.

  • Beesie
    Beesie Member Posts: 12,240
    edited April 2009

    Maria,

    Sorry I can't help; that's a question that your doctor needs to answer.  I'm just quoting the information from the NCCN Treatment Guidelines.  Here's their definition of micromets as it relates to nodal involvement:

    • Micrometastasis (greater than 0.2mm, none greater than 2mm)

    http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf  Page 58  There is further discussion about the classification of nodal mets on page 61.

  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited April 2009

    Hi Barb, yes you are the only other Papillary girl I have met too.  I have researched our particular cancer quite a bit and although it is quite rare (only 1-2% of cases) they are usually slow growing and of a low grade and have a better prognosis than other more common breast cancers.  Hey, whether it is true or not it certainly feels good to read that!!!  Have you seen an Onc yet, what is happening with your micromets?  I also had a bilateral but with immediate reconstruction and now am on Tamoxifen.  Isolated tumour cells are classified as node negative (as agreed at the San Antonia Breast Cancer Symposium 2007) but not sure about micro mets.  I would certainly do tamoxifen though if you don't go down the chemo path.

  • tokmik
    tokmik Member Posts: 4
    edited May 2009
    nice! Good article! i really loved it! it was very helpful and informative. Austin Radiation Oncologists
  • Beesie
    Beesie Member Posts: 12,240
    edited May 2009

    tokmik,

    You seem to be here simply to promote your company - 4 posts since joining and all contain a one sentence platitude and your url.  Did you know that this is against the guidelines of this board?

  • GayleB
    GayleB Member Posts: 385
    edited August 2009

      I haven't posted in a very long time, but I did notice this thread and just had to respond to this.  I was diagnosed in Jan 2008 with ILC in the left breast.  I opted for bilat mastectomy.  The BCS did a sentinel node biopsy at that time and the lab discovered a single micro-met.  I had an axillary node dissection 3 weeks later, with 6 nodes removed and no other involvement.  I was offered chemo, but declined because it would have only given me a additional 3% advantage when added to the Arimidex (which gives me a 12% advantage).  We decided that the extra 3% wasn't enough to outweigh the possible compromise to my already compromised immune system, not to mention what it might do to my heart (I am a heart patient, too--lucky, huh;).  Should the cancer return at some point down the line (hopefully not ever) we will re-visit the chemo question.  For now, we are confident that we made the right choice and that the Arimidex is doing its thing.  In fact, I read, recently, that MD Anderson is pulling women with large tumors off the chemo and putting them on Arimidex, or another like drug, to shrink the tumors.  Seems that the aromasin drugs are often more effective at this.  For certain, they aren't as debilitating!  Gayle

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