Tumor Position and Prognosis

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elizzim
elizzim Member Posts: 146

I'm not really sure which forum this belongs in, but...yesterday I was reading a few threads that talked about something I'd never encountered before - even after all my research. It was the fact that tumors in the lover and lower/inner quadrants are more likely to drain to the IMC nodes, which are under the breast plate, rather than the axillary nodes. This fact would make a negative axillary node status meaningless. Even though the axillary nodes might have been clean, this other node chain under the breast plate could easily have been positive for cancer.

My tumor was very low, at 6:00. For the first time, I'm realizing that I could have had metastases to this chain of nodes without knowing it. Had I known this, I might have needed more chemo than I got. I also would have opted to do some form of localized radiation, I think. I'm not second-guessing my doctors; I understand that these nodes are in an area that is problematic to get to surgically. I'm just realizing that the prognosis I THOUGHT I had may not be my prognosis at all, and my prognosis could be much worse.

Most of all, reading this put me in a complete panic, and I need to find some way to calm down about it. Does anyone know more about this issue? Any light that anyone could shed on this would be much appreciated. I'm wondering why my breast surgeon/oncologist never mentioned this issue.

Comments

  • sflow
    sflow Member Posts: 297
    edited July 2009

    I would be interested in knowing more about this too since my tumor was at 7:00.  I was IDC stage 1, grade 3, node negative, ER+/PR + HER2-.  I am 2 1/2 yrs out and had lumpectomy, radiation, and am on arimidex. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Liz - I am finished with chemo and due to start radiation soon.  I asked my Radiation Oncologist this question and she said that if the tumor was draining to two areas the dye would have showed that. I specifically asked about tumors draining to IM nodes.  

    my tumor was at 11 o'clock, but I too have bouts of panic about the IM nodes.

    All I can say is ask your oncologist, know that you have done all that was considered "standard of care" and try to focus on other things (I know that is difficult).

    Can I add that cancer sucks? :)  You are not alone!  I am interested to hear what others say about this issue.

    April

  • hollyann
    hollyann Member Posts: 2,992
    edited July 2009

    I spoke at length with my oncolgy nurse yesterday on the phone about this very subject......I had stage 1b grade 1 IDC with grade 2 DCIS.....I had a bilat mast with immediate TRAM recons.....I was freaking out too about this thread on location and mets.....What my nurse said was that it is very rare and that for me anyway I had a low OncotypeDX score and that the chances for ANY mets in those nodes was practically zero.......She sadi we have done all that we can  and that if it was 2 1/2 years ago when I was first diagnosed and all this information about location had come out then that we would not change one thing in my treatment even though a score of 11 is now in the grey area.....She said that the study was not fool proof but that i was a small study and more research needed to be done before anything else would change...She said chemo would only have lowered my chances 4% .........I hope this helps some........I was so scared I was litterally sobbing to my nurse .....I had been a wreck for two days after reading that thread on tumor location and mets......My nurse said I was reading way too much into it..I trust my nurse and she has never let me down on anything..........

  • mmm5
    mmm5 Member Posts: 1,470
    edited July 2009

    I also was an early stage gal but, my ONC does full scans prior to chemo. What I was told is that if you had anything significant in these IM nodes it would light up on a scan. Of course there are microscopic cells that could out without getting the benefit of scan view but that could be said about all channels.

  • elizzim
    elizzim Member Posts: 146
    edited July 2009

    April and hollyann - thank you, thank you, thank you!! I was trying to play it a little cool, but I can't tell you what a panic I've been in. I was envisioning the worst, if you know what I mean. It helps to know that there is at least some question about the inevitability that a tumor in the lower quadrants would drain to these nodes. Realizing that what I read doesn't necessarily mean that it happenned helps a lot. And yes, I'll say it too: CANCER SUCKS SUCKS SUCKS. I've just been feeling how much I love life, how much I want to do...which I guess is the silver lining.

  • elizzim
    elizzim Member Posts: 146
    edited July 2009

    Just curious - what were the position of your tumors, if you don't mind my asking? 

  • prayrv
    prayrv Member Posts: 941
    edited July 2009

    Hollyann,

    Sorry to hijack this thread but now the oncotype test score of 11 is now in the gray area???  When did this happen?

    Trish

  • dlb823
    dlb823 Member Posts: 9,430
    edited July 2009

    Liz ~  Here's the research that information probably came from:

    http://www.annalssurgicaloncology.org/cgi/content/abstract/14/3/1031

    There was also an active thread here a few months called Quadrants of Breast Cancer Survey that I'll try to find and bump for you and anyone else who may not have seen it. 

    You might want to run off a copy of that study and discuss it with your BS the next time you see him/her.  Maybe you could even request a PetScan of that area, to give you peace of mind?     Deanna     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    liz - my tumor was at 11 o'clock - so upper inner quadrant. I had read that same article mentioning the inner quadrants, which is why I brought it up to my Radiation Oncologist!

    April

  • mshalto
    mshalto Member Posts: 70
    edited July 2009

    Hi Elizzim--

    My tumor was also at 6:00 or 7:00 position--left lower inner quadrant. After online research revealed horribly scary "statistics", I emailed my wonderful onco. who has extinguished the moments of panic I've had along the way and she replied "It's folklore"..absolutely untrue!

    I felt better. Right now I'm focusing on a good outcome for an MRI on Wed. Had my first post-treatment(lumpectomy/rads) on Monday and they want to take a closer look at the dense breast tissue around the lumpectomy site "just to make sure".....but of course I obsess!

    By the way, I'm in the Boston area where the expertise is first-rate and I do trust my oncologist.

    Try not to worry ---I know it's hard.

    Have a good w/e!

  • don23
    don23 Member Posts: 512
    edited July 2009

    I would also like to know about oncotype score of 11 being in the grey area! My score was 11 and never was told this was a grey area. I did not do chemo because of my score. If I knew it was in grey area I would have done the chemo. Now I'm getting nervous I didn't do chemo when maybe I should have. I had two opinions and was never told this! Yikes!!!!!

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited July 2009

    I worry about mediastinal lymph nodes - something I NEVER would have even thought about - because my last cat scan of my chest showed one of mine to be enlarged (1.6cm)........and when I went online, it said anything over 1cm is suspicious for cancer! I asked my onc about this - and he told me that's only true for lung cancer - for breast cancer, they only worry if they are larger than 2cm. I made up my mind then and there to STOP obsessing about this...........there's nothing I can do anyway...........I do trust my onc (silent and serious though he be)...........so at this point in time, since I'm feeling well (with still a tight tummy after my abdominal hernia repair).......I want to concentrate on recovering from the last surgery and get ready for my Stage 3 foob repair (nipple recon, yay!)

    I really believe there is so much we can do to help our immune system stay in tip-top shape to fight cancer - I'm not one to frequent the Alternate Therapies board - but being in a positive frame-of-mind really helps too. Looking at the online calculators for recurrence, I find it very interesting that with my Stage 1 and Grade 1 cancer, the likelihood of dying from cancer is LOWER than dying from other things. These days I worry much more about having a car accident (especially with all the rain)...........anyway, I'm not trying to minimize anyone else's worries or fears - it's a process we all have to go through - I have good and bad days - but the best thing we can do is talk to our Oncs and get reassurances from them.

  • lexislove
    lexislove Member Posts: 2,645
    edited July 2009

    I don't worry about the IM nodes. It didn't even know they existed untill these kind of threads! I'm gonna ask my onc next time his take on this study.

    BTW my tumor was 12"oclock.

  • elizzim
    elizzim Member Posts: 146
    edited July 2009

    Your words were so reassuring, mshalto. Even though I still plan to talk to my own onco (one of the top in NYC, so I'll report back what he says), I'll be calmer until then.

    Swimangel is right, and that's the direction I'm trying to head in - serene frame of mind, optimism, healthful habits, gratitude - all immune boosting things! 

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

    I just had my FIRST onc appt today (because I demanded one) and brought up this very topic as my tumour was at 6 o'clock VERY low on the breast (underwire line) and close to the chest wall. She said it's not true about the position having anything to do with recurrence. She also said that ALL fluid goes through the axiliary nodes even if they do hit the lower chest wall nodes as well.  My  micromets is NOTHING to worry about....okay. But when I read posts of chemo, rads and hormone or other AIs I've always wondered. I had nothing but surgery. Then when I hear 3% better chance or something I think big deal, I wouldn't put myself through that just to gain single digit better chances!

    So, I too, am going to continue blindly on my merry way as I have done for the past 8 months.  Laughing

  • Hanna60978
    Hanna60978 Member Posts: 815
    edited December 2011
  • hollyann
    hollyann Member Posts: 2,992
    edited August 2009

    prayv the Oncotype score of 11 just changed in last year or so because of some trial that was done.....I can't remember the trial but look on Genomic Health's website for it.....

    Hanna I think you are right cause the radiologist who injected me and had me massage my breast went all over my chest with that geiger counter and it was only in my arm pit.......So I guess I can rest assured I didn't "light" up in my chest area.........

    Barbe glad you had your firsr onc visit and he could put your mind at ease...Are you going to continue seeing him for follow up visits?.......

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

    I don't have to see her again unless I get cancer again. There was a couple unanswered questions, but she'll send the answers to my surgeon and PCP.

    The tumor has to drain SOMEWHERE, it's the nature of the beast. I remember them getting pretty excited during my MRI saying 'there's vascular actvity!' 

  • mshalto
    mshalto Member Posts: 70
    edited August 2009

    Hollyann,

    I tried to find that trial on the Genomic Health website--no luck. I also tried googling--again no luck.

    Are you SURE the scoring changed?? I'm a 19 and thought that 18 to 30 was intermediate risk of recurrence. YEESH!!! Now I'm a tad concerned but just want to get through my first MRI this Wed. to evaluate scar tissue at lumpectomy site. One worry at a time, I guess!

    Have a good w/e....hope you have the same nice weather that we're having in Boston..

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited August 2009

    Mshalto - try this:

    http://www.mytreatmentdecision.com/360-tailorx-clinical-trials.aspx

    It talks about the TailorX trial - and says:

    " Patients with Recurrence Score results between 11 and 25, whose risk for recurrence is moderate and for whom the benefit of chemotherapy is unclear, will be randomized to treatment with hormone therapy plus chemotherapy versus hormone therapy alone "

     Hope this helps.

  • Newbie21
    Newbie21 Member Posts: 70
    edited August 2009

    Hi,

    what about all those people that did not have aSNB? Like my mom. no dye or tracer.  Is this any less vaild or as good? she had 9 clean nodes removed. Thanks all. hugs, giulia

  • hollyann
    hollyann Member Posts: 2,992
    edited August 2009

    Yes, mshalto, I even recall asking my onc about this and she said they did change it but it would not change ...Let me go and see if I can find the link......I will update with the link soon.....The trial is the TAILORx Trial if that helps....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    In that trial, people with scores between 11 and 25 are randomly assigned to one of two arms.  Arm I receives hormonal treatment.  Arm II receives chemotherapy followed by hormonal treatment. 

    They are trying to find out at what point the benefits of chemotherapy might outweigh the risks, and they are including women with lower scores just in case there is benefit there.

    The risk assessment hasn't changed, that score is just the cutoff point to possibly receive chemotherapy in the clinical trial setting.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Here is a web site that gives very good information about the test as well as the scores and what they mean...this web site states that a score of 18 or less is low risk. I believe even though the TailorX trial has its result criteria oncologist continue to use the numbers published by Geonomic as treatment guidelines.

    My score was 12, in early 2007 when mine was done they said that I was well below the mid range level and that chemo would be of very little or no benefit for me.

  • nelia48
    nelia48 Member Posts: 539
    edited August 2009

    My tumor was at the 6 o'clock position, right at the bra line.  You have to remember, though, that I waited 7 years after finding the lump to get treatment and it had already broken through the skin.  I did have lymph node involvement under my arm, 5 out of 15.  I had chemo, mastectomy, and radiation.   Since then, I've had two PET scans, and nothing has shown up in the chest. 

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