To Have IORT or No Rads

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kat888
kat888 Member Posts: 7

Hi~

I'm about to have surgery in 9 days to remove DCIS/ADHs on right breast with sentinel node biopsied and PS will do breast conservation to have left breast symmetrically matched.  I have stage 0 DCIS Grade 2 size is 1cm ER+/PR+ .  (I have been approved for IORT clinical trial group that is styuding women with low grade DCIS who have tumor size less than 30 mm. who have this procedure done)  I am debating if I should go ahead with IORT or wait for my pathology report to find out if my VNPI makes me a good candidate to forego radiation of any kind.  Would like to be disciplined enough to go the alternative route with holistic organic and natural treatments.  But want to know if others with IORT have no regrets or have had major side effects.  Thank you. 

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    I can't answer the IORT question but I have a question for you. 

    If you are having a lumpectomy, what's the rationale given by your surgeon for having the Sentinel Node Biopsy?  That's not usually recommended for women who are having a lumpectomy for pure DCIS.  If it should turn out that some invasive cancer is found, an SNB can be done afterwards.  But with pure DCIS, it's not medically necessary to check the nodes, and any node removel exposes you to a lifelong risk of lymphedema.  Have you discussed this with your surgeons and made a conscious decision to have the SNB or is it just something that your surgeon suggested (some surgeons continue to do SNBs when they do lumpectomies regardless of the diagnosis).

  • kat888
    kat888 Member Posts: 7
    edited August 2013

    Thank you Beesie for bringing this to my attention.  I am going for pre op tomorrow and will stop and ask the BS as to why I'm having SNB.  I do have local necrosis so I don't know if that is the reason why or if it is simply standard practice.  According to the RO the IORT will not interfere if my margins don't come back clear and they feel I would still need WBI in addition to it. 

    And I did go for 2nd opinion with Dr. Silverstein, who will be performing my upcoming breast surgery along with PS and the RO will be there to administer IORT. 

    I went for 2nd opinon after my first MRI biopsy in Feb. 2013, it was suggested that I get double mx and implants because of the size of the lumpectomy that would disfigure rb and make left breast unmatched in symmetry and size. 

    So I was so grateful to be given the option to have BCS instead of bmx.  Is being overweight a factor in taking the extra precaution with snb? 

    I am thankful for your input and insight into this procedure as I am not sure what to expect.  If there's anything else I should check out please don't hesitate to let me know.  I really appreciate it!        

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    Kat, DCIS cannot travel to the nodes.  So it's only if some invasive cancer is found with the DCIS that it becomes necessary to check the nodes.  If you were having a mastectomy, then it would make sense to have the SNB, since it is difficult to do an SNB after a mastectomy (the process involves injections made into the breast, and once the breast is gone....). So if a MX was done and some invasive cancer was found, and if an SNB hadn't been done, then a more extensive axillary node dissection would be necessary.  So usually the choice is to do an SNB as a precaution when the surgery for DCIS is a MX.  But with a lumpectomy, there is really no reason why an SNB needs to be done because it can always be done later should any invasive cancer be found.  Being overweight shouldn't be a factor. 

    Here is a link to the NCCN Treatment Guidelines for Patients, Breast Cancer.  http://www.nccn.com/files/cancer-guidelines/breast/index.html#/60/

    The information about DCIS starts on page 61.  These are the same guidelines used by most surgeons in the U.S..  You can see at the top of page 62 that it states that "Lymph node surgery is generally not done with DCIS".  In the next sentence, when they refer to situations where an SNB might not be possible after some surgeries, they are referring to mastectomy surgery.

    Many doctors downplay the possibility of lymphedema after a sentinel node biopsy but the risk is actually not insignificant.  Additionally, once someone has had nodes removed, they often choose to take precautions with the use of that arm - no blood draws, no blood pressure, extra care to not get an infection.  So even if you never develop lymphedema, having an SNB can have an affect.  I don't have lymphedema, but I am always cautious about my right hand and arm. 

    For someone who has invasive cancer, having an SNB is a necessary risk, but that's just not the case for someone who has DCIS and who is having a lumpectomy.

  • kat888
    kat888 Member Posts: 7
    edited August 2013

    Thank you Beesie for the extensive NCCN Treatment Guidelines for Patients, Breast Cancer.  Very informative and well written in book form.  That will be of great help to read and learn more...and I am definitely going to ask why I need the SNB as I'm already having a fear of having that more than the IORT!  Sometimes all of this can be quite overwhelming in making the best choices and also scary; so just praying for no side effects or long term complications from all of these risky procedures!  I can now go to my pre op tomorrow with a little more knowledge and I truly appreciate you sharing that important information in regards to SNB and the possible health risks involved...and that it may not be necessary if I have pure DCIS.  Thanks again! 

  • kat888
    kat888 Member Posts: 7
    edited August 2013

    Thanks again Beesie!  I spoke with my BS and I will not be having a SNB since it is considered pure DCIS.  I'm still debating if I should have IORT or not...and wait for Pathology Report to see if I should have radiation of any kind.  That's why I was hoping others that had IORT for low to intermediate grade DCIS had it and didn't have any major side effects and also with no recurrence.  That would be of big help to me to make my final decision!  Much appreciated! ~ kat 

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