multi-focal tumors.....and survival

2

Comments

  • indenial
    indenial Member Posts: 504
    edited July 2013

    Mshelton, I also had multifocal... main tumor was 1.8cm IDC, then there were 2 smaller areas of IDC, and 3cm of DCIS. Makes me feel very grateful I had the BMX, I don't worry that there are other tumors hiding out there! I had chemo so feel confident that I was treated aggressively & I try not to worry too much about the multifocal part. It's good to read the previous posts here & see that it doesn't seem to affect prognosis!

  • corgi09
    corgi09 Member Posts: 53
    edited July 2013

    I'd love to hear some too.  I had 10 tumor/tumorlets, micromets in 2 nodes, one that was extranodal.  I have a low oncetype and am on tamoxifin.  I'm not interested in statistics (because we're not differentiated out) and would love some anecdotal evidence.

  • jenni__ca
    jenni__ca Member Posts: 461
    edited July 2013

    yep multi-focal here too .... area involved was 7 cm at lumpectomy with no clear margins in any direction and path report from mast said 7 cm ....

    now 9 years later it has gotten a lot easier to go about life but sometimes still have those heart stopping minutes where i think "oh my 3A !!"

  • Colt45
    Colt45 Member Posts: 771
    edited July 2013

    My wife had multi focal disease. All the tumors were histologically similar.



    I read where mastectomy essentially wipes out any higher risk of recurrence with multi focal... and frankly, a lumpectomy----if it excises the tumors with good margins----would be fine, too. It's just trickier to be certain you got all the lesions with lumpectomy.



    My wife had a 2.2 cm primary tumor and 1 cm and 4 mm 'satellites' very nearby.



    When trying to figure tumor burden with multi focal for staging, it gets tricky. Adding the tumor diameters (at their widest area) is misleading and overestimates tumor burden.



    I was trying something with my daughter's Play Doh. I rolled a 2.2 cm ball, a 1 cm ball and a 4 mm ball (keep in mind that this may also be overestimating as her 2.2 cm was not a ball, but rather was 2.2 cm at it's widest diameter) ------and if you add the 3,diameters up, you get 3.6 cm.



    BUT if you literally roll all 3 balls into 1----the diameter of the 1 larger ball is just 2.6 cm.



    VOLUME isn't about adding diameters at their greatest width.



    It makes sense to me that tumor burden is more closely related to volume, which is likely to be somewhat close to the size of the primary tumor, particularly if the primary lesion is significantly larger than the satellites.



    It's probably why they still go with just the primary's size for staging purposes.



    In the end, because surgery is referred to as the "primary treatment", any surgery that achieves clean margins essentially serves the purpose of surgery, whether you're multi focal or not.



    My wife's oncologist wasn't the least bit concerned with the multi focality since the surgery my wife had achieved clean margins.

  • karen1956
    karen1956 Member Posts: 6,503
    edited July 2013

    I had 3 tumors as well as lymph node involvement....and I'm still here 7+ years later!!!

  • mshelton
    mshelton Member Posts: 66
    edited July 2013

    Thanks for the replies.  I was given a T1c from pathologist (surgery) with the largest nodule being 1.3, one at .9 and one at 1.1.  (two were IDC and one was dcis).  Also only close  margins were obtained following BMX (one tumour was within 1mm of chest wall) and lymphovascular invasion was positive.  The tumour load (stage) was being treated for the largest of 1.3 cm.  I have been turning it over in my head that if one added up all the tumours, I would be at 3.2 cm and that would change my stage  (the one article that I found discussing this on the Internet also fed my fears).  Colt45--appreciated your play-dough experiment.  It made sense as i was wondering why they might only use the largest size of one for staging.  I feared "under" staging and the results. There seemed to be little discussion about this topic.  Also I was to get Sentinel dissection but the dye did not travel to my nodes.  So three axially nodes were found and submitted which were clear (thankfully).  But then one wondered why the dye was blocked.  The surgeon suggested that the sentinel node was the cancerous mass or maybe the passage to the lymph nodes were being blocked by cancer cells or maybe just scar tissue from the first diagnostic biospy was causing the blockage.   

    i guess i know now why I'm getting radiation following BMX.  That was not expected.  

    I didn't realize I was posting in the Stage III Breast cancer forum since I found this discussion using the search function.   I think it could apply to all of us with multifocus/foci tumours.  

  • LuvMyFam
    LuvMyFam Member Posts: 101
    edited July 2013

    mshelton, I had multi-focal also.  My doctor wasn't concerned about it.  The only difference was one was HER2+ and one was HER2-, so I was on Herceptin for a year and will be on Tamoxifen for 10 years.  Feel free to PM me if you have any specific questions.  I am almost finished, just waiting on my exchange surgery (Oct. 1st).

  • indenial
    indenial Member Posts: 504
    edited July 2013

    My extra tumors were not tested for ER/PR/HER2... Did you have to ask to have them tested? Maybe mine were too small to test??? Now I'm worried that maybe I should have gotten Herceptin too. 

  • lekker
    lekker Member Posts: 594
    edited July 2013

    Indenial- my understanding is that depending on the size of the smaller tumors, Herceptin wouldn't be offered even if they were HER2+. I think some hospitals cut it off at under 1cm and others at under 5mm. My additional ILC was only 2.5mm so they didn't test it for HER2 because they wouldn't have given me Herceptin even if it was +. They did test for ER/PR when I asked them to but seemed surprised. I'm not a doctor but I was thinking maybe chemo would've been appropriate if the little bugger was ER/PR- (oncotype on the main ER/PR+ tumor was 13 so no chemo based on that). In general, doctors only want to run tests that impact treatment decisions and you already did chemo and are taking tamoxifen. If your smaller invasive tumors were to small to receive Herceptin even if they were +, you know that you didn't miss out on any needed treatment. If the tumors were large enough that Herceptin would be standard of care but they weren't tested, you would need to check with your MO about options going forward.

  • indenial
    indenial Member Posts: 504
    edited July 2013

    Lekker, thank you, that is very reassuring!! I don't know the exact size of the smaller tumors but it sounds like they would've been well below the cutoff for Herceptin. So that makes me feel much better!!

  • wallan
    wallan Member Posts: 1,275
    edited March 2017

    I am chiming in. I have multifocal BC too.

    I had BC last time 13 years ago - two tumors which they added up to be 7 CM and classifed me as stage 3a at that time with 2 positive nodes. But there was discussion that it was stage 2b based on the biggest tumor. I was completely NED for 13 years like I said.

    I now have BC in the other side - 5 tumors this time but all are small. The largest is just shy of 1 Cm. I am node negative - so I am at stage 1a. It is actually considered a new set of tumors and not a recurrance.

    So then technically, I am still NED from the first time. So there ya go.

    wallan

  • LM070917
    LM070917 Member Posts: 323
    edited March 2017

    I was also multi focal. Main tumour was 5cm with satellites of a further 3cm. Just 1.5 years out I find it interesting that majority of women with multi-focal on this thread areassociated with ER/PR+ Subtype.

  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2017

    I forgot whether I chimed in before but I had 2 tumors each 1 cm ILC and IDC oncodx of 34, I am still NED 5 years out.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited March 2017

    Hey, I wrote the initial post and I'm still here, lol! It will be seven years in July. Hi Kathleen (yourself speaking to yourself)! Here's your long term survival story to help you!

  • YATCOMW
    YATCOMW Member Posts: 664
    edited March 2017

    Very cool Kathleen........



  • Tom1981
    Tom1981 Member Posts: 52
    edited March 2017

    Kathleen, good for you. You are a prime example of it can be done.

  • KCMC
    KCMC Member Posts: 208
    edited March 2017

    Kathleen, thanks for writing this, I am new in my journey and they just found another mass in my breast and had second biopsy today. First biopsy done three weeks ago and IDC er positive and pr positive HER2 - I did ask the surgeon today if second mass would be the same and he said thats like comparing apples to oranges so we will see. I am so happy for you and now there is hope for me!

  • dtad
    dtad Member Posts: 2,323
    edited March 2017

    Hi everyone. I also was multi centric. I had 1cm ILC and 1cm tumor IDC in same breast but far from each other. They don't add the tumor sizes together anymore for staging so I'm stage one. Good luck to all...

  • Tpralph
    Tpralph Member Posts: 487
    edited April 2017

    I am awaiting the biopsy results of a second tumour they found in a different quadrant 4 oclock first one is 10 oclock. I have read there is a 52% chance of lymph node invasion and that the medial tumours may spread to the intermammory lymph.  (so far clinically negative)When they do a sentinel will they remove any of those nodes? or will they only remove the ones in the axilla?  Also how many of you had negative nodes after surgery?

    I'm a little freaked out about all of this (I know I'm not alone :) )

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2017

    I had sentinal node and one more biopsied and nothing found, only the 2 tumors. I was er 95% and pr less than 1%.

  • Tpralph
    Tpralph Member Posts: 487
    edited April 2017

    that is awesome Meow, gives me hope.  the biopsy results are positive for another IDC this one less than 1 cm and grade 1. 
    So hoping I can get surgery sooner and get this out of me!  So very afraid for the 52% lymph involvement.  how big were your tumours, what type were they and what grades?

  • Tpralph
    Tpralph Member Posts: 487
    edited April 2017

    dtad:

    I take it you did  not have any lymph involvement either?

  • dtad
    dtad Member Posts: 2,323
    edited April 2017

    No I did not have lymph node involvement. Good luck to all...

  • wallan
    wallan Member Posts: 1,275
    edited April 2017

    Hey ladies:

    My second primary cancer was multifocal - 5 little tumors. 2 IDC and 3 ILC. I am node negative. And the oncologist says all the multiple tumors just means I needed a mastectomy. Which I had. I am waiting for oncotype dx results, but the MO said likely I will not even need chemo. I do not need radiation. She says the prognosis for the second cancer is good. I am 100% ER+/98% PR+ her2-

    wallan


  • Tpralph
    Tpralph Member Posts: 487
    edited April 2017

    ive been getting breast pain. Still awaiting surgery and no neoadjuvant. Is that common?

  • vjenelle
    vjenelle Member Posts: 9
    edited May 2017

    My diagnosis is multi-focal IDC. A second tumor was detected on the MRI. The second tumor was about the same size as the primary tumor. So it turns out my left breast was really loaded. I had a masectomy on 4/6. My surgeon seems confident that he removed all of the cancer. The MO didn't seem too concerned that it was multi-focal. The goal was to get treatment started sooner rather than later. I start chemo next week...so here's to moving forward.

  • Tpralph
    Tpralph Member Posts: 487
    edited May 2017

    vj congratulations for ending one phase and moving on. Can't wait to get these creatures out of me. Still have just over two weeks to go

  • sugarplum
    sugarplum Member Posts: 318
    edited May 2017

    kathleen1966 - Just read your March 2017 post above, which was so cute! I love the idea of you waving back at yourself from the future. I found my post on this thread from 2012, so I'm waving back at us too :)

    Hugs to you in the present...Julie (middle name Kathleen!)

  • Tpralph
    Tpralph Member Posts: 487
    edited May 2017

    anyone getting surgery soon?  I'm having a bilateral mastectomy with diep flap may 18th. two tumours right breast ugh....

  • gkbuser
    gkbuser Member Posts: 348
    edited June 2017

    susan, can I ask how you found out that it was in your hip? I had multi focal (10 foci ) invasive lobular. All clustered in one area. Had lumpectomy and radiaion. Started femera and zoladex shots. Have had hip and back pain which I am told is a side effect of the meds - both have that side effect. So, my question is did you have any joint pain from the meds? How did you realize it was in your hip?

Categories