6 Month follow up - DCIS recurrence (or missed 1st time)

dazedandconfused123
dazedandconfused123 Member Posts: 61
edited November 2015 in DCIS (Ductal Carcinoma In Situ)

Hello Community Members,

This is my first posting and really need some guidance. My holistic primary care physician is out of town for several weeks so I am on my own. I am a pretty holistic, crunchy granola type:)

Hopefully, my history and diagnoses will show up in my signature line. If not, following is my history:

DCIS diagnosed 1/15 {ER (3+/3), PR (3+/3); Oncotype score: 15; Genetic testing: Negative

Lumpectomy 3/15

DCIS recurrence (or was missed the first time?) 9/15

MRI 10/15 (nothing suspicious noted)

1st time around I did not need radiation and declined hormone therapy. I simply don't like the idea of either one.

Now, a lumpectomy and partial radiation is being recommended to me (don't know about hormone therapy). My main concern is that I just went through all this mess 6 months ago. Neither I nor the surgeon knows if the DCIS is a reoccurrence or if it was there and was missed initially (it is in the same location as my first diagnoses / lumpectomy). Was not able to get Oncotype score as there was not enough tissue but she will try to send a sample in from my 2nd lumpectomy.

I consider myself low risk and have read about folks just watching and waiting. On the flip side, we have a high deductible insurance plan so all of these tests are very expensive. We have met the deductible this year due to all these tests, so financially it would be good to go ahead and get all my treatment done by the end of this year.

Is the fact that this happened only 6 months later significant? Advice regarding watching / waiting versus moving forward? Advice / guidance in general?

Thanks so much!

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Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    Dear dazedandconfused123,

    Welcome to the BCO community. We are sorry that your recent diagnosis brought you here but glad that you reached out. We hope that you will find support and information that is provided by our well informed and compassionate members. Keep us posted. the MOds

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  • Fearless1956
    Fearless1956 Member Posts: 106
    edited October 2015

    Did you have an MRI after your initial diagnosis of DCIS to check for the chances of more cancer being present?

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited October 2015

    No MRI first time around. I requested it with this diagnosis; surgeon says everyone looks good.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited October 2015

    I had 3 lumpies till the BS surgeon gave the all clear, only dCIS. I would be surprised if you can get everything done by the end of the year as it sure took me longer. I never had an MRI but my doc was great and now I am 7 years out with no reoccurance

    the AL is not bad and I finished up all of that a year ago, good luck, get another opinion from a dif doc would be my suggestion

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  • Racy
    Racy Member Posts: 2,651
    edited October 2015

    Were your diagnoses DCIS or invasive cancer? I ask because you mentioned Oncotype, which is only used for invasive cancer, to my knowledge.

    Either way, treatment guidelines do not recommend watch and wait. 

    Was your surgeon a breast specialist? I recommend you see a breast specialist.

    Keep us posted.

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  • Annette47
    Annette47 Member Posts: 957
    edited October 2015

    Racy - there is an Oncotype specifically for DCIS (different test than the one for invasive cancer) that is supposed to measure the risk of recurrence and is used when making decisions about whether to have radiation. I don’t know much about it as it was not offered to me.

    To the original poster, personally, I would be leery of watch and wait ... I guess if there is a chance that this was “left over” cancer from the first time that wasn’t removed then I would wonder if there is more that has’t been detected. And if it is a recurrence, then that too would make me think it is aggressive enough to address. Having had radiation and Tamoxifen myself, I can honestly say it wasn’t bad at all, and I would do it again in a heartbeat.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited October 2015

    Proudtospin: Just curious what is AL?

    Racy: Diagnosis is DSIS. They ran Oncotype (or attempted to) both times. They also did the BRAC and other genetic testing because I am relatively young (46 at age of diagnosis) and adopted so no knowledge of family history. Surgeon is breast specialist.

    Thanks everyone for your feedback!

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited October 2015

    AL is short for aromatase inhibitor or Arimidex, Femara and Aromasin. The are hormone therapies given to women such as me who are in menopause. They are part of the 3 pronged approach to prevent any cancer from reoccurring. In my case, they helped to insure that neither boobie has a reoccurance.
    I am wondering the same, was your surgeon a breast specialist? mine was and is one of the best in the state but she did need 3 tries to get it all. I would be looking for a new surgeon if only for another opinion. Also do you have a MO or Medical oncologist?

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited October 2015

    Proudtospin: Thanks for explanation of AL.

    I saw a medial oncologist after 1st lumpectomy who recommended Tamoxifen which I declined and he was fine with.

    The breast surgeon is a specialist here at Baptist Health which is a huge megalopoly breast center here in Miami. At 1st diagnosis, she stated limited radiation was an absolute requirement and hormone therapy was negotiable. After the lumpectomy, she stated that she did not think the radiation was required because the results were so good. Of course I could have proceeded with both radiation and tamoxifen if I wanted but I really wanted (and continue to want) minimal treatment necessary. This 2nd diagnosis she again says limited radiation is an absolute requirement.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited October 2015

    Annette47: Thanks for clarifying the different Oncotype tests and your feedback!

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  • Racy
    Racy Member Posts: 2,651
    edited October 2015

    Thank you for that info, Annette. I just googled it. Strange that I haven't heard this Oncotype mentioned in debates about treatment for DCIS.

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  • Annette47
    Annette47 Member Posts: 957
    edited October 2015

    Racy - it’s a relatively new test (newer than the original Oncotype) and not widely used yet.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited October 2015

    ok, so I confess that my family had absolutely no history of breast cancer.

    I was one of those women who just followed the directions...my pcd would say it is that time, and give me a script for the dreaded mamo, and I would go and do it

    the year I flunked my mamo was a complete shock to me! got a letter on a weekend from the center where I did my test saying, oops we found shit! call for a followup

    so I called, they said I needed a biopsy as they found suspicious calcifications ( no lumps), I called my dear PCD, who said well I want you to have a surgeon just in case~~

    she gave me a surgeons name and I called for the apt for the test that same day

    surgeon said, I am sure this is nothing but we need to test it~~~

    well guess what, the test...I flunked it

    I am saying all of this as no one, not my PCD, not my BS and sure not me thought that is would be something

    But it was, glad I did the full deal as well, it is 7 years and all is clear,

    follow your docs orders and you will be fine, if you ignore them, well you may end up regretting it

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  • kcat2013
    kcat2013 Member Posts: 391
    edited October 2015

    Sorry you are dealing with this again so soon. I would wonder if the newly found DCIS was there to begin with and just not seen. When I was diagnosed I was sent for an MRI before surgery to make sure there was no other cancer lurking in my breasts. MRI showed 3 separate areas of DCIS that none of the other imaging had shown (mammo and ultrasound). If it was me I would go ahead and do the lumpectomy, with the added bonus that you've met your deductible.

    Kendra

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  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    dazedandconfused, I ended up with DCIS admixed with IDC, so hope you don't mind me jumping in on a DCIS discussion. How big was the first lump they removed? And did they tell you whether you had clean margins or not? That would seem to be important to determine whether the new area was left behind from the first surgery or is indeed a new area. If the 10/15 MRI noted nothing, how do they know there is another DCIS lump? Any estimate on size?

    Having said all of that, I lean to the alternative side myself. The problem with DCIS is, now that you know it is in there, will you be able to deal with the stress if you don't have it removed? There is also the fact that many women have gone in with "DCIS only" only to find out after pathology IDC was contained within it. That's what happened to me. The removal of the lump was not a big deal for me. The aftershocks of negative receptors and chemo were the bad part. I have no problem with cutting the stuff out, and if anything comes back for me, I will get it cut out again.

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited October 2015

    Thanks for your feedback proudtospin, kcat2013 and Italychick!

    A little but of further information is I have a history of fibrocystic breasts so have been getting mammograms for at least 10 years (if not more). In addition, I had a few (3?) biopsies that were nonmalignant during that time. My gut is this area was there before my initial lumpectomy and was missed. I did not receive an MRI the first time around; it was not offered to me nor did I think it was necessary. I was told the area was very small and was microcalcifications. This MRI did show the area of DCIS but did not show any other suspicious areas.

    I did not get the pathology report after my lumpectomy but will request it tomorrow. The surgeon did say the area was very small and had clean margins.

    How do I get my Dx, Surgery, and Treatment Protocols to show up in my signature? I filled out all of that info. when I registered?

    Thanks everyone!

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  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    I think you have to make it public. There is a box to check I think

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2015

    I'd be leery of the watch and wait also. As one who had impossibly dense breasts I'd want some type of systemic treatment like rads and or tamoxifen. It all sucks but invasive BC sucks worse.

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  • Jelson
    Jelson Member Posts: 1,535
    edited October 2015

    dazedandconfused123- I would assume too that this "new" dcis was actually a second area that was missed when the first was completely excised in March. How was this second one found? a mammogram? by mri? part of your follow-up protocol? this dilemma is what you will be faced with again and again if you choose to do watchful waiting - something has been found - at what point do you act?? hopefully before it has become idc or has metastasized. This to me is the problem with watchful waiting. I would get the dcis removed now. You can decide about radiation and tamoxifen at your leisure, when the doctor you are most comfortable with returns.

    Also, Proudtospin, wouldn't the acronym for aromatase inhibitor be AI, not AL?

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  • dazedandconfused123
    dazedandconfused123 Member Posts: 61
    edited October 2015

    'Jelson,

    This DCIS was found at my 6 month follow up mammogram and ultrasound. It also showed up on a follow up MRI. Very good point about waiting on rads and tamoxifen till later. I had no thought of that

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