don't know what to do....HELP

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momaton
momaton Member Posts: 780
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi all,

here's the deal....after US, diag mammo, MRI, core needle biopsy and finally a meeting with my surgeon.....I have DCIS. I have read as much as I can here looking for anyone in my situation.

I have 7 areas of DCIS all in the same quadrant but rather spread out. 1cmx1cmx1cm, 5mmx 7mmx5mm and the other 5 areas are clustered and about the size of  small pearls.

What is weird I couldn't feel any of theses lumps in October nor could my PCP. or my DH for that matter.

Now I can feel them and as soon as my surgeon started doing the exam she said right off that it all was cancer.

The question. I am leaning towards a MX, because I am an A cup but a Bcup because I have implants. So not much tissue there.  My surgeon said she could take all the tissue and leave the skin and nipple and use my exsisting implant. I am trying to avoid rads ( if I have the wide or quadrantectomy) because it can cause issues with the implant.

It is all so complicated. I want to leave my lymph nodes...is that possible with a MX.

any ideas?. I also realize that a final diagnosis is not possible until I actually have surgery. BTW the areas are not near the chest wall...doc said my implants actually protected me from that.....

thanks for any thoughts and advice.

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  • danawp
    danawp Member Posts: 99
    edited December 2013

    You are in a difficult spot, first finding out and figuring out what to do.  It is very confusing, but once you come to understand your options and choose a plan, you will feel a bit better.  

    Clear margins are the key.  Clear margins means enough tissue around the cancerous area can also be removed.  If the doctors feel they can get clear margins, you can choose between a lumpectomy (with radiation) or an MX or BMX. If they feel they can't get clear margins, they will recommend the MX.  I had very widespread DCIS in one breast (15 cm) so the doctors felt an MX was necessary.  A lumpectomy was not an option.  I opted for a BMX (double MX) for symmetry and peace.   That's a personal choice, not medically necessary, but I was a DD and felt it was the best way to go for me.   

    However, to answer your specific question, often with DCIS, if you choose an MX, that is the only treatment.  When a small area is effected and a woman has lumpectomy, that is often followed up with radiation.  

    Separately, as for the lymph nodes, they will likely test a few (often 3) at the time of surgery.  This is a sentinel node biopsy (SNB). If they are clear, they will not look to remove any additional nodes, and no follow up treatment will be required for that.  If any are positive for cancer, they will remove as many as necessary.  Also, chemo is a likely follow up to positive nodes.  I hope that clarifies that question for you.

    Good luck.  This is a very scary and confusing time, but with DCIS and early detection, odds are definitely in your favor.  You will get lots of good information and support here!

    Dana

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

    If your surgeon has offered up that both a lumpectomy and MX are viable surgeries for you, then only you can decide which option is right for you.  Have you read this thread?  lumpectomy vs mastectomy - why did you choose your route?   If not, you might find that discussion helpful. 

    As for the SNB, normally if you have a MX for DCIS, an SNB is done.  This isn't because of the DCIS, but is because of the risk that some invasive cancer might be found in the final pathology. At that point an SNB would be necessary, but an SNB can't be done (or at least rarely is done) after a MX.  There are a couple of options.  You could look into the new option of sentinel node mapping.  This is very new however and I don't know how willing many doctors are to try it.  You can read more about it in the last few posts in this thread (on page 6):  A layperson's guide to DCIS

    Another option would be to have a lumpectomy first so that you have the final pathololgy.  Then you can go ahead with the MX and if the final pathology showed no invasive cancer, you can be more comfortable in not doing the SNB (although of course there is never a 100% certainty that nothing more will be found).

    Could you completely opt out of doing an SNB?  Yes, it is your choice, but with 7 areas of DCIS, I think that would be pretty risky.  Your DCIS obviously is active and if it's active, that might present a greater that a microinvasion might be hiding in there too.  That's just speculation, however.  I don't actually know if multi-focality increases this risk; I'll see if I can find any studies about this. 

    What is the grade of your DCIS?

     

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  • momaton
    momaton Member Posts: 780
    edited December 2013

    Thanks so much Beesie,

    I do not know the grade.....?  the strange thing on the core biopsy path report of only one lump..."a portion of one markedly atypical gland for neoplasia is present at the edge of the specimen. Resection of this area is suggested." Which is telling me the DCIS per my surgeon is very close to breaking through. Of course I am second guessing.....but added to my surgeon saying "it's cancer" after feeling all the little areas I am thinking I want this out. I do not want chemo nor rads.....My mom, when I was 7 yo had colon cancer (I am 57yo) she had surgery and nothing else and was fine. My former husband had colon cancer and then chemo....progressed to having a brain tumor and rads that killed him at 45yo.....that is a primary reason for my wanting to get rid of the possibilities for cancer coming back now. I will worry forever more......just my personality.

    Sooooo just talked to my husband again.....with the multi-focal aspects of this and the fact that I have dense/nodular breasts and the DCIS did not show up on the mammo...I am very much leaning towards a dmx. I already have implants and hopefully my surgeon can do skin sparing on the bad breast....seems a bit dramatic...we do not have insurance so finances are a factor also.......wow....sigh....one hospital stay to take care of any future worry and cancer seems like a small price to pay.

    I did read all of the posts on the lumpectomy vs mx forum....there is no one right answer is there?

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

    You got it.... There is no one right answer.  And there is no easy answer.  You just have to figure out what's right for you.  Or maybe you have to figure out which of the options you consider to be the least worst.

    If they know that you have 7 areas that are suspected to be DCIS, how was the DCIS found if it wasn't seen on your mammo?  The MRI?   Were all 7 areas biopsied and confirmed to be DCIS?

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