DCIS and Recurrence???

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  • olivia218
    olivia218 Member Posts: 257
    edited May 2010

    Roberta2,

    So sorry about the day! And now the waiting, which we all know is one of the worst parts of this whole thing. (((HUGS))))) and prayers for you to get some results quickly.  

    Cindy,

    UGH, I think this is what we all fear, so sorry it has happened to you.

    Olivia 

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited May 2010

    Roberta

    let us know how you are. Praying for you.

    hoping you get some answers very soon!

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  • lh88
    lh88 Member Posts: 21
    edited May 2010

    I just found out yesterday that I didn't need a mastectomy after over 6 weeks post DX of recurrence of 5/2007 DCIS (lumpectomy, 33 rads)!!!

    If my hospital hadn't gone out of business right after my DX, if I had gone in 2 or 3 weeks earlier, I would have had the mastectomy already. I shudder to think...

    My BS explained that there is tremendous divergence amongst pathologists in the interpretation of biopsy slides. She comes well-recommended on several referrals, and my former BS, so I think I can trust her. She is at Memorial Sloan Kettering.

    I am now scheduled for another procedure (forgot name in the exploding brain moment of finding out she didn't think I needed a MX!) on the 19th, and I don't yet know what else she will recommend. I'm now rethinking everything I researched and prepared for, now that I'm not having a mastectomy/TE/recon! Although it would have been nice to have boobs for a change, I was not looking forward to the surgical "maintenance" required, or the possible immune system effects if one already has mild symptoms.

    I didn't know there were so many people with recurrences of DCIS.

    Good vibes and thoughts to all going through surgery/treatments!

    Lil

    First diagnosed 5/2007 DCIS (lumpectomy, 33 rads). Recurrence DX March 2010

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  • lh88
    lh88 Member Posts: 21
    edited May 2010

    wow, great post!

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  • Roberta2
    Roberta2 Member Posts: 106
    edited May 2010

    RESULTS:  OK, back on the first fine needle biopsy of the fluid only.  It showed CANCER.  Doctor said today that he has seen negative for cancer and then it ends up being cancer.  But he has NOT seen the fluid to be cancer and it turns out that it is not.

    NOW, the core needle biopsy.  Out of 20 tissue samples in 4 locations, ALL showed no cancer.  The doctor is confused as well.  He said normally the tissue sample (one location) is a better indicator but because the fluid did show cancer, he just does not know. 

    SO, now we are scheduled for surgery on Tuesday because he said the only way to know 100% sure is to do the surgery. He said he will have the pathologist in the surgery to make a determination immediately if he thinks it looks like cancer.  IF not, then that will be it.  IF yes, then he will take out as much as possible but if extensive we may have to do something else later (if you remember from my previous post, the idea for the tissue sample was to stage the cancer and see if it was hormone receptive to see if they could shrink it first). 

    This THING is like a inch long and a inch deep, and attached to the skin and pectoral muscle.

    I know I should be happy with benign results, but this is just beyond ridiculous!

    Doctor is having a doctors review board conference on Monday and will discuss my case.  We are to have a phone conference with doctor Monday afternoon to discuss what was discussed at the review board.

    When I speak with the doc on Monday, I am going to tell him point blank IF the tumor is benign find close me up like he wants.  BUT IF it is cancer, then I want him to take the larger tumor out, the smaller tumor (near same location) and to take out the two  lymph nodes in question which are on the same breast but other side.  I dont care if he has to cut twice or ten times but I will not have one area to be cancer and not check the others in case the tissue samples was wrong....AM I CRAZY FOR WANTING THIS DONE???

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  • ladyod
    ladyod Member Posts: 152
    edited May 2010

    I do not think you are crazy at all and I think that is a very intelligent decision!  Why take a chance on the others?  And since he will be right there, you would think it would be easy to do!  God Bless You!  I am glad that it was benign, and will keep you in my prayers.  Sorry this is so darn confusing....what a roller coaster ride!  I am sure you just want to say "stop the ride, I want to get off!"  Keep us posted!

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  • codavis
    codavis Member Posts: 122
    edited May 2010

    I don't know if this will help or hurt, but don't forget that in the operating room the pathologist only does a crude examination of the sample. I don't know the exact term for it, but, according to my surgeon, they can't always tell it's cancer. In fact, I think he said something like only 10% of cancers are identified in the OR when doing a sentinal node biopsy. After surgery, a more thorough pathology exam is done and you have to wait for the full report (usually a week later) to determine for sure if there is cancer present.

    I bring this up because I met a woman at a support group and she'd had a lumpectomy and sentinal node biopsy and her surgeon told her the nodes were cancer free. A week later when she went in for her 1 week post op appt, he told her that she had cancer in her nodes and that she'd have to have an axilliary disection and chemo, radiation, etc. She was devasted.

    I've been lucky to have a great surgeon and he prepared us for all the possiblities and outcomes from my surgery. I will be thinking good thoughts for you and hope you get good news.

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  • jentray
    jentray Member Posts: 4
    edited May 2010

    hi

    i was looking for sites to find information on lobular breast cancer and came through with this blog site posting on DCIS

     http://www.abreastcancerstory.com/blog/what-is-dcis-breast-cancer-and-how-to-determine-it.html

    My sister was recently diagnosed with lobular breast cancer and i've been looking all over the internet for information that might help us understand better what she's going through.

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2010

    The above post from jentray appears to be promoting a specific website - jentray just joined BC.org today and all of her posts include a link to this particular site, which appears to require people to sign up.  According to the rules of BC.org, this is spam.  I have reported these posts.

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited May 2010

    Beesie,

    Although that post was removed before I could read it, based on your others post I trust your judgment and appreciate your reporting it. I will not dignify the later poster's comments.

     Thank you, again, Beesie, you've been a real asset to this community.

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  • orange1
    orange1 Member Posts: 930
    edited May 2010

    Beesie's posts are consistently some of the best researched, well written, and helpful I have seen on this website.

    Edited so as not to pick on those less fortunate. 

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2010

    CTMOM1234 and orange1, thank you!   It takes 5 people pushing the "report this post" button for a post to be removed by the community, and all 5 of jentray's posts from yesterday have been removed, so obviously I wasn't the only person who identified jentray's posts as being spam. 

    Roberta2, in my time on this board, I've seen quite a few cases, my own included, where a core needle biopsy turned out to be wrong, but usually there is a good and obvious reason to question the validity of the core needle biopsy - and that's what leads to an excisional biopsy being done. Often the concern is that the samples taken might not have been from the right area.  This can happen if the suspicious breast tissue is close to the skin or close to the chest wall - both areas can be difficult to reach with the needle and if the needle placement is just slightly off, the sample might not valid.  The other situation is when needle biopsy results show no cancer but do show a high risk condition such as ADH. Because ADH and breast cancer (particularly DCIS) are often found together in the same mass, in most cases when ADH is found by a needle biopsy, an excisional biopsy will be done to see if any cancer cells are also present.  In about 20% of cases, something more serious than ADH ends up being found.  In the case of my stereotactic biopsy, I had both a difficult to reach area of calcs, and the biopsy found ADH.  So the fact that my excisional biopsy showed cancer wasn't much of a surprise.  In your case, with 20 samples from 4 areas all showing no cancer, it would be quite surprising to find that the core needle biopsy was wrong.  Stranger things have happened, of course, but I'd think that the odds of your core needle biopsy being wrong are pretty small.

    And I don't think your plan is crazy at all - I would make exactly the same request of my doctor if I were in your shoes.  If cancer is found in one area, take out all the suspicious areas!  But codavis's point is an important one to keep in mind.  If it turns out that there is some cancer in there, it's very possible that there is only a tiny amount - that would explain why the 20 needle samples missed finding anything.  But if there is only a tiny amount, it's also possible that the pathology review that's done while you are in surgery might not find the cancer cells.  My surgeon explained to me that pathology reviews that are done while the patient is in surgery by necessity must be done quite quickly.  These reviews are good at finding cancer if there are quite a few cancer cells spread throughout the tissue, but if there are only a few cells - just a microinvasion in the breast tissue or micromets in the nodes - the few slices of tissue that are examined while you are in surgery might not include the cancer cells.  So the pathology report that you get immediately after surgery is preliminary only and the results could change once all the tissue is more thoroughly examined later.  Hopefully that's not what happens in your case - hopefully you get the "all clear" both after surgery and from the final pathology report - but it's something to be aware of.

    Good luck on Tuesday.  I'll be thinking about you!

    Edited to add:  sunnyhou, our posts went through at exactly the same time.  Thank you as well!

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited May 2010

    Beesie is not promoting other web sites. She is sending links to studies. For crying out loud..!!

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited May 2010

    Beesie

    I deleted my post. I was scared that the poster would start a war. I have never thought that you post links for people who you do not agree with politically. I have never read a post where you even mentioned politics or anything of the sort. Just the facts.!! without you and your "posts" I would not have gotten through this. I used your posts for when I was having anxiety attacks and they calmed me down.

    oh well..!!

    just hoping Roberta gets to the bottom of this soon

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