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NEW Oncotype Dx Roll Call Thread

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Comments

  • Luna5
    Luna5 Member Posts: 532
    edited March 2010
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    I don't understand your question.  Your other posts indicate that you have already had chemo.  Do you have a new situation in which you are considering doing chemo a 2nd time?  I had responded to your earlier question, but deleted it when I saw your earlier posts about having already gone through chemo. ?????

  • limegreen
    limegreen Member Posts: 38
    edited March 2010
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    Hi, I would like to be a part of the thread.  My score was 20 with a recurrence score of 12% cut down to 4% with 5 years of tamox.  I had bi lat mx with immediate reconstruction on Jan 13.  I am node negative, my tumor originally 0.9cm but now another lab says it's 0.55cm so I am trying to get to the bottom of that.  I am grade 2 (with mitosis score of 1 indicating the least agressive).  I am 47, BRCA negative, my Mom had bc in the 70s and passed in '86. 

    I have been having a really difficult time with a chemo decision because local onc said definately T/C.  With node negative, stage 2, under 1cm I sought 2nd & 3rd opinions.  Dana Farber in Boston said strongly recommend no chemo, toxicity not worth it, only 2-3% benefit.  Yale said 4% benefit probably not worth it, chemo benefit very very small, probably miniscule.  Excellent prognosis with just hormonal therapy.  Once local onc read reports back from my other opinions, he changed his tune saying he would be very comfortable with hormonal therapy alone.  After him being so adament about chemo for all this time then change his opinion I think has me unsettled.

    This should all make me feel better but for some reason I feel paralized and a little down in the dumps because I am worried either way.  This is awful.  I want to get beyond this.

    Thank you for letting me vent. 

  • TNgolfer
    TNgolfer Member Posts: 57
    edited March 2010
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    limegreen,

    I don't want to oversimplify this, but the entire reason for the Oncotype Dx assay is to compare the risk vs benefit of chemo.  Generally for ER+ tumors the effective treatment is hormone therapy, not chemo.

    My score was 19 (indicating 12% as well) and after I met with my oncologist he said adding chemo to my treatment (the bilat Mx and hormonal therapy) would only reduce the risk of recurrence over 10 years by about 2%. 

    Not having chemo!

    But you have to be comfortable with the decision.  If 3 professionals agree, no chemo, my suggestion is to find a good book which describes how estrogen receptor tumors feed....that may help.

    Marianne

  • kmid
    kmid Member Posts: 9
    edited March 2010
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    Had simulation Mon.  Went to breast surgeon yesterday in  large city for 1+ month f/u from lumpectomy.  All well at 1st, though area above/below scar looks like a golf hole.  Surgeon found a "M& M" size lump under my left arm-not the right, cancer side.   Due to see a med. onc. there next week and now scheduled the same day for ultrasound on previously unaffected left breast area. Dr. said not to worry, most likely nothing, etc.  Reminded me of when I started this last Aug.  Am pretty freaked out but trying to be positive.  Anyone had this experience?  Supposed to start radiation daily Mar. 29. Breathing deeply!

    This is all after Oncotype 17 test.  I was just getting settled mentally with the treatment process.  Now I am totally thrown.  Hope I am not experiencing a game changer. Did have MRI on both breasts at Sloan Kettering in early Jan2010 and nothing showing except right breast cancer.  Now this thing under my left breast?!

  • limegreen
    limegreen Member Posts: 38
    edited March 2010
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    kmid, try to find comfort in the fact that they are being thorough and that this lump was found and is being investigated.  I know it's difficult to stay positive.  After my initial biopsy the MRI showed 3 more spots, one my surgeon said was a definate 'hot spot' located just near where my original malignant lump was taken.  He said if the new spot was malignant then it was far enough away from the original tumor to be considered a new cancer lump.  I thought for sure it would be another cancer but after the core needle biopsy samples, it came up as nothing. 

    If it turns out to be a little something then it has been caught and you will be able to take care of it.  Keep us posted and know we are praying for the best.

  • limegreen
    limegreen Member Posts: 38
    edited March 2010
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    thanks Marianne, I have been reading about estrogen receptors, what drugs help, the mechanisms they work by, etc., but my progresterone is also really high, 70% so I am investigating that too.  I would do the chemo in a second if my benefit was high.  One path re-examined the original tumor slide saying it looks like 0.75cm instead of the 0.9cm.  She is sending same slide to Dana Farber in Boston to the path there for confirm.  Should know early next week the final evaluation.

    Has anyone avoided food with soy products in them as a result of being ER+ PR+  ?

  • kmid
    kmid Member Posts: 9
    edited March 2010
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    Thanks! I am trying to keep positive and busy.  Will keep you posted.  The good news is that I have an appointment with a good med onc right before the ultra sound check and it is all in a big medical center.  Yet another flight, but a necessary trip! Definitely praying it is nothing so I can get on with starting treatment.

  • kmid
    kmid Member Posts: 9
    edited March 2010
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    I am just curious that so many people on the site have opted for mast. I read somewhere there is a regional preference. 

  • limegreen
    limegreen Member Posts: 38
    edited March 2010
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    I don't know about a regional preference.  I think it is a very personal decision made for very personal reasons.  My doc gave me a choice of lumpectomy, single mast or bi-lat mast.  I chose bi-lat for a few reasons.  My breasts were always lumpy and problematic and I felt lucky to catch the cancer early when I did (mammo didn't pick it up).  Felt because I now have b.c. my chances increase even more if I keep any breast tissue.  I wasn't willing to keep the breast tissue and take a chance.

    It was a very difficult decision but I got 2nd opinions and carefully looked at all of my options, what they meant, my prognosis and what I wanted to live with.  Once I decided I never looked back and I still know I made the right decision for myself.   

  • TNgolfer
    TNgolfer Member Posts: 57
    edited March 2010
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    I agree.  The decision for mastectomy is not always a choice.  I had to lumpectomy's and still could not get clear margins, so the mastectomy in the cancerous breast wasn't really a choice, it was a "must do".  As for the non-cancerous breast, the prophylactic mastectomy was my choice (an agonizing choice) and it was made for a lot of reasons -- don't think there is a "regional" preference, or an ethnic preference, or any other kind of preference.

  • kmid
    kmid Member Posts: 9
    edited March 2010
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    Thanks for the mastectomy info.  It is so hard to determine the course of treatment for this disease.  I was all for minimally invasive treatment and now, if I have bc on the other side, I would go for a BMS.  Amazing how we move from the least invasive to the "whatever it takes" mode.

    I value reading these posts.  I get frustrated talking to people not experiencing ever anything like this.  It seems to range from "Keep a positive attitude and smile" to "Let me tell you about my experience with skin cancer, etc."  Just once, I would like someone to say, "This is scary and totally sucks."  Enough-just overloaded today on well-meaning comments.

  • kmid
    kmid Member Posts: 9
    edited March 2010
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    Thanks for the mastectomy info.  It is so hard to determine the course of treatment for this disease.  I was all for minimally invasive treatment and now, if I have bc on the other side, I would go for a BMS.  Amazing how we move from the least invasive to the "whatever it takes" mode.

    I value reading these posts.  I get frustrated talking to people not experiencing ever anything like this.  It seems to range from "Keep a positive attitude and smile" to "Let me tell you about my experience with skin cancer, etc."  Just once, I would like someone to say, "This is scary and totally sucks."  Enough-just overloaded today on well-meaning comments.

  • KatRNagain92
    KatRNagain92 Member Posts: 59
    edited March 2010
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    In regards to the regional preference of BMX, I believe it is more of a trend than a preference...if you see what procedures were popular even as early as 5 to 10 years ago vs. today there seems to be (with the help of breast re-construction rights) a greater prevalence in bilats...which might be attributed to higher customer satisfaction with symmetrical cosmetic results.  The current trend dictates our disdain for what we're going through yet gives us control over our body image.

    Luna, I found your posts a page back very interesting.  Is there a test that they can determine when the body begins utilizing the tamox as food?   I saw my Onc on Friday and she said I was an excellent metabolizer and the 20mg daily is fine.  I take mine at 8:00 at night and have virtually no side effects.  I've been taking it for 30 days now and it actually improves my sleep and my mood!  She did an estradiol level on me to determine if I was close to menopause or not (I had a hyst 10 years ago but kept my ovaries) and I was off the charts.  A level <30 indicates menopause and I was 250!  I just feel I was on Estrogen overload....and that was causing a great deal of my problems (not just BC) 

    I don't have to see the Onc again for 6 months so Praise the Lord for that.  (I'm not crazy about her anyway...so why would I want to see her sooner?  HA!)  On the other hand, I am seeing my gyn to monitor my ovaries next Wed...now him I like! ;)

    Have a great rest of your weekend.
    Kat

  • rubytuesday
    rubytuesday Member Posts: 19
    edited March 2010
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    7%=11  LM, SNB, FM (2nd time around for me thus the mast.)

    THANKS for being the Oncotype police! Cool This is great info!!

  • cancersucks
    cancersucks Member Posts: 100
    edited July 2010
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    Hello ladies, my onc does not believe in the testing to verify whether you are a good metabolizer and this is at one of the best cancer institutions in the nation.

    I still think it's all a crap shoot and with many oncs, we are the guinea pigs and if they are wrong or gave us bad advice,  oh well, now they just go into ""management care"" of a stage 4 cancer patient.

    That's just my truth and how I feel. This site is priceless, fight on ladies!!!!

  • Dublin4
    Dublin4 Member Posts: 48
    edited March 2010
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    Bummer  score of 30....chemo starts this week.  4 rounds every three weeks.  Should be done by the end of may.   Thanks to all who have shared and listened.  Stay strong!

  • chasinghope
    chasinghope Member Posts: 17
    edited July 2010
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    Good luck Dublin, chemo is doable, but it does suck!!!!!! You will get through it, I did and I will never regret doing it with a grade 3. I had a low onco score less than 10% and my doc (who is from a damn good hospital) said "I think you should do it, I recommend it still, you're tumor was grade 3 and that means it was very aggressive." Best to you, CH

  • Dublin4
    Dublin4 Member Posts: 48
    edited March 2010
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    Dear Chasing,

    Thank you for the kind words.  I guess I knew I would most likely have to do chemo...but I am really so terrified about it.  I know that is will help improve my survival rate...but it just stinks.  I know that I can do anything 4 times.  So three weeks post op, I star the next round to recovery.  I hope this one goes as well.

    Thanks again! 

  • chasinghope
    chasinghope Member Posts: 17
    edited July 2010
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    Dublin, If you ever need someone to talk to or any help through it I can tell you some tips on how I made it through 

    You can do this....Just keep moving forward and know that chemo ends and you are sending in the big guns to kill any possible fragmented, demented, blind little cancer cells that have the odds stacked up against them, remember the odds are in your favor. For what it's worth you are doing the right thing...just my opinion, night, CH

  • Mina_Bird
    Mina_Bird Member Posts: 3
    edited March 2010
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    Hi -- I just got back my oncotype dx score and it was 20, which is a low intermediate score.  My doctor is recommending CMF chemotherapy, along with radiation and hormonal therapy, and I am trying to figure out what I want to do.  

    Diagnosis: 1/19/2010; IDC,ILC, DCIS; 50 years old and pre-menopausal; partial mastectomy (left breast) on 2/11/10; 2.2 cm, 0/1 nodes, ER+/PR+, HER2-, grade 3, oncotype DX score 20; diagnosed with LCIS in right breast in August 2006; family history of breast cancer (mother, aunt and paternal grandmother).

    Frankly, after writing all of that, I'm leaning towards doing the whole nine yards, But any comments/input would be greatly appreciated. Help!

  • Marion
    Marion Member Posts: 116
    edited March 2010
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    Hello Mina_Bird!

    My advice is to do chemo, just based on your score (20) and grade (3). 

    My score was 21, my tumor was 1.3 cm, grade 1, no family history, and I decided for chemo. I can sleep at night knowing I did everything I could. Better safe than sorry!

    Good luck with your decision ! 

  • kmid
    kmid Member Posts: 9
    edited March 2010
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    Hi!  First, good luck Dublin4-that sucks and I will keep you on my prayer list. 

    So interesting update. Went to temporary med onc Mon. and he had gotten Oncotype report.  Total switch. "No need for chem.  Low score (17)" etc. I am going tomorrow to see a med onc at a major medical center for 2nd opinion (scheduled before this new opinion from dr. who said 7 rounds chemo initially).  Also, going to get ultrasound and maybe needle biopsy on new area under other arm ("Don't worry," says surgeon.  Sometimes you want to say, "And when did you have bc?") Scheduled to start rad. on Mon. Did the Costco run today with tshirts, big sports bras, etc.  Hope it all goes ok.  Will keep you posted.  This does suck but I have a new grandson (my 1st grandchild) and a son graduating from med school.The roller coaster keeps moving here!

  • Marion
    Marion Member Posts: 116
    edited March 2010
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    Hello kmid!

    a low score and no chemo for you, that's awesome! congrats! It is a great idea that you are going to get a 2nd opinion, I did the same.

    I don't understand why they are doing a biopsy under your other arm. Did you get an MRI ? Did they see something suspicious on the MRI?

  • Dublin4
    Dublin4 Member Posts: 48
    edited March 2010
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    Hello all....Well I board the chemo train tomorrow morning.... and get off on May 28th (last treatment) not that I am counting or anything.  Mina_Bird I agree with Marion....you have to do everything you can while you can.  My Onco score made it very easy for me as it was high middle range.  I had a very very small tumor (6mm) but grade 3. They did not think I would need chemo but score showed something different.  So with Chemo and hormones my risk becomes significantly lower.  Onco says chemo will really help to ensure that I stay in the good cancer boat as he called it.  Only you can decided what to do.  Marion how long did it take for your hair to grow back?  Any advice on the whole chemo thing.....I was really hoping to miss it but I have to this so....off I go!

  • chanellygirl
    chanellygirl Member Posts: 15
    edited March 2010
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    Dear mina-bird,

    My onco score is 24 (recurrence % 16) and I recently decided to do the chemo.... It was a hard decision, especially being in the intermediate range but with a grade 3 tumor anf being 48 years old I feel i want to do all i can to never see this ugly beast again.

     You have to do what is in your heart and what makes you comfortable. When I met the first onco although she said her bias was to do chemo I didn't feel any peace with the way she communicated the recommendation.  I went for a second opinion and for whatever reason felt much more peaceful with the recommendation and my decision... 

     KMID..

    Congratulation on completing the run and especially on your new grandson!! Thinking of you and hoping your upcoming appointments bring your some peace and answers..

    Dublin, sending energy and positive thoughts for tomorrow... Please let us know how you are feeling... 

    K 

  • kmid
    kmid Member Posts: 9
    edited March 2010
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    Good news today! I saw a great young med onc and he said he would not recommend chemo.  In fact, he would not support it if I really wanted to do it! Next, ultrasound.  Had a very stressuly 45 min. sitting in a freezing room in gown waiting for them to start.  Guess they had trouble reading previous MRI, needed reports, etc.  Tech. was scary-asked if others in my family had breast cancer! Finally, radiologist came in and said all looked good-couldn't find anything suspicious.  I was weak with relief. I tried not to think that this was how it all started last Aug. with "all looks normal."

    Thanks so much for the prayers and support.  I will keep it up for everyone! Interesting comment by med onc about the Onctotype.  He said he was surprised my Blue Cross Blue Shield had covered it since doctors here had a lot of trouble getting it approved for patients! The TailorX study will cover it but only if you agree to be in the study which makes sense, I guess.

    Start radiation on Monday.  Good luck to everyone and I will stay in touch.  Can't remember how many rads but think I get finished before my son graduates and daughter and family visit with new baby! Prayers and hugs!

  • Luna5
    Luna5 Member Posts: 532
    edited March 2010
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    I have tried several times to be added to the list.

    I will try one more time.

    Please add me to the list  Luna 5 ....OncotypeDX score 0....Local recurrence over 10 years 0%...Distant recurrence over 10 years 3%......BLMX...HYSTY/OOPH....SNB both sides.....NO Tamox or AIs

    Thank you!

  • Mina_Bird
    Mina_Bird Member Posts: 3
    edited March 2010
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    Thanks so much for your comments and kind thoughts.  I think I will get a second opinion, just to see what another oncologist has to say. 

    BTW, has anyone here undergone CMF chemo?  I'm told it's a less taxing type of treatment, although it's takes a longer amount of time.

    All the best to everyone here! Thanks again! 

  • chanellygirl
    chanellygirl Member Posts: 15
    edited March 2010
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    Mina-Bird,
     
    I am starting CMF treatment on April 12th and have heard and according  to my onc it is suppose to be less taxing but until I start treatment will not know...
     
    There is also a CMF thread which I will bump up for you.  It took me a while and a few opinions to make a decision about the chemo but once  I did I felt much more at peace... 
  • Mina_Bird
    Mina_Bird Member Posts: 3
    edited March 2010
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    Hi chanellygirl,

    Sounds like you are comfortable with your decision  Good luck with the CMF treatment - I hope you're one of the those who has little or no SE's. 

    I have an appointment today to discuss the treatment in more detail with the nurse practitioner at my med. onco's office.  I'm almost 95% sure that I will do the CMF as well. Like you, I want to do everything I can so I don't have to encounter the BC beast ever again!  Because next time I might not be as lucky.

    Take care and I'll send positive energy to you. 

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