Newly diagnosed, conflicting info... Need opinions

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dookiedook13
dookiedook13 Member Posts: 3

Hi ladies,

Before I start, I want to let you know that I am posting on behalf of my 62 y.o. computer-phobic mother.Tongue OutHowever, I've been to every appt., sat in every waiting room, and used my knowledge as a medical assistant to help her through all this. I'm the only child of a single mother, so to say we're close is an understatement. Here's her story (forgive me for being long-winded):

My mom has had a history of breast lumps since 2006, all biopsied, all benign. There was only one lump (left breast, 2008) that showed a suspicious biopsy and had to have a lumpectomy. This lumpectomy was benign. All her mammos including her latest one have been benign. Her sonos have always shown benign lesions as well (but were biopsied anyway of course) until her latest one in September 2012 which showed a small nonspecific focus in the left breast. She was told to f/u with another sono in 6 months. This one showed that the nonspecific focus had gotten a little bigger, so a biopsy was done. The biopsy was read by our hospital's chief pathologist and also was sent to a breast specialist in CA, both of whom agreed that it was ADH and recommended excision.

Lumpectomy was done 5/8/13. The surgeon (the same surgeon who has done every biopsy and lumpectomy since the beginning) removed a sizable specimen and did not do a SNB. This was read by the pathologist who was covering for the chief pathologist at the time as a"focal area of DCIS, low grade; clear surgical margins." When the chief pathologist returned, he also read the specimen and amended the path report to "MINUTE amount of DCIS, low grade; clear surgical margins (0.1 cm from nearest inked margin of resection)" with a footnote stating that "because the amount of DCIS was so minute (less than 0.05 cm) and on recuts was even smaller, breast prognostic profiling could not be performed."

She was referred to a heme/onc. During the first appt. with the onc, he told her she was very lucky, all the cancer was removed, the surgeon CURED her, and brought out the flip chart showing that she was Stage 0. No mention of rads, drugs, what to expect, nothing. He then ordered routine blood work, a chest x-ray, a CA 27.29, and told her to come back in 2 weeks. That follow-up appt. was today.

So there we are today in the office. First he asks what we talked about the last time because he doesn't remember. He looks at the chest x-ray and the blood work and says that everything looks fine. Then he says to make an appt. with the rad onc. She asked him if he really thought she needed rads. He said that if she gets it or doesn't get it, she'll be ok either way. Now what kind of answer is that?? Then he gives her a prescription and says that because they couldn't do the hormone profile on the DCIS (too small), this pill would cover them all. She has to ask him the name of the drug because he doesn't tell her. It's Evista.

All right, so WTF?? There was no risk-benefit analysis done, no information given, no nothing. Just "Take this, it's a good pill." No mention at all of the black box warning about dying from strokes or getting DVTs. My mom is an insulin-dependent diabetic, has a 50% blockage in her right carotid that is being monitored, and is a former smoker of 30 years. Her mother had several TIAs and a massive brain stem stroke that led to coma and death. Multiple aneurysms on her father's side (father, 4 AAAs; uncle, 5 brain; grandmother, ruptured in brain and caused death in her early 50s). There is no family history of breast, ovarian, uterine, or cervical cancer in either side of Mom's family. There is, though, an obvious strong family history of vascular events along with her own personal risk factors for the same.

The other issue then is about the rads. Is zapping that single minute area of low-grade DCIS that was totally and cleanly removed by lumpectomy worth the risk of exposure to the heart and lung?

Based on the above info, if this was your scenario, what would you do? We'd love to hear the opinions of those who have been on this rollercoaster before... Thanks in advance!

Comments

  • Ariom
    Ariom Member Posts: 6,197
    edited June 2013

    Hello, to you and your Mother. It's great that you are there to do this for her.

    Well, I can only say what I would do if this were me, or my Mother.

    It may sound like a cop out, but I'd be getting a second opinion before doing anything. There is a lot of evidence that small low grade DCIS doesn't always require Radiation, and many don't take the pills either.

    There is a wise poster here named Beesie who has all the latest info on DCIS. I am sure she'll see your post and come in with advice for you.

    I wish your Mother all the very best, and I am very glad of the success of her surgery. Don't be pushed into anything that you aren't comfortable with. Let us know how you get on.

    I should mention, because you'll see my Dx below. I had DCIS too, but a mix of grade 2 and 3, and bigger than your Mother's. I chose to have a Mastectomy for several reasons, one being, that I wanted to avoid Radiation. My Surgeon said there wasn't any good research to say I should take Tamox, so I didn't go there.

    If you have any questions, please ask.

    I don't know if this helps.

    There is a lot of info specific to DCIS on this board. Beesie has spent  a lot of time putting the research on here. I would urge you to read it. It will help you really understand DCIS.

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2013

    Hi dookiedook13, and welcome to BCO. We hope you and your mom find this community a great place for information and support.

    Despite the doctors attitude, which wasn´t very professional, chest x-ray and blood work said that everything looks fine, so that´s a good thing!!! Any way, as Ariom said, if you and your mom are still concerned, it can also be helpful to seek a second opinion. You can read more about Getting a Second Opinion in our main site.

    Hope this helps.

    ---The Mods

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

    dookie, I would agree that a second opinion makes sense.  It sounds to me as though your mother's diagnosis was a very tiny tiny amount of DCIS bordering on ADH - and frankly that does put into question whether radiation and/or hormone therapy is necessary.  The only fly in the ointment seems to be the margin size - 0.1cm is 1mm and that's considered the minimum necessary to have a clear margin.  In fact some doctors require 2mm before they will say that the margins are clear. 

    Having said that, the oncologist that your mother went to does seem to be particularly aggressive in his treatment approach, both with his 'no discussion' recommendations for rads and hormone therapy and with the tests he ordered.  Blood work, a chest x-ray, and a CA 27.29 are not the norm for DCIS.  Great that the tests were clear but unusual that he even ordered those tests.

    So I'd say try to find another oncologist, one who will look at your mother as a complete patient, with consideration to the specifics of her diagnosis and to her medical history, and not just look at a pathology report that says "DCIS" and prescribe standard-of-care treatment (and particularly, standard of care for the 'average' DCIS diagnosis, which your mother does not have).

    Good luck!

  • dookiedook13
    dookiedook13 Member Posts: 3
    edited June 2013

    Thank you all so much for your replies and your previous posts which were very informative. There's another side to this story with Mom's onc that I wonder about. His wife died from breast cancer, so I'm wondering if maybe he treats extra aggressively because of this. He's human too, just not very professional in regards to explaining next to nothing about what was going on and what to expect. I also questioned the ordering of the CA 27.29 test. From my understanding of my research, it's used to monitor a metastatic cancer's response to treatment. That wouldn't be even remotely appropriate in Mom's case. 

    The office called today with the appt. for the rad onc in two weeks, so we're not going to let this one leave the room until ALL questions are answered. Watch out doc! LOL This particular onc is part of a team at the cancer center that's 45 min away from where we live, whereas Mom's current onc is in a small practice comprised of just himself, so I'm sure that'll make a world of difference right there.

  • dookiedook13
    dookiedook13 Member Posts: 3
    edited June 2013

    Ha! A funny thing happened yesterday when my mom went for her incision recheck at the surgeon's office. She was telling him that she went to her onc twice already and that he was sending her to a rad onc for possible radiation. The surgeon gave her a funny look and said,

    "Radiation? That's like shooting an ant with a shotgun!"

    Made her instantly feel better about all this. He told her that he removed a large section of breast tissue and that the DCIS in the specimen was only a "speck." He advised her to continue getting her mammos as recommended from her GYN and that he and the GYN would monitor her closely. These two docs have been with her since the very first benign lump was found in 2006, and they've always taken great care of her. In fact, this GYN (who delivered me 31 years ago!) has a local reputation and a nickname - Goldfinger! - because he is so good at finding the tiniest of lumps. LOL The surgeon of course told her to follow up with the onc as well, but we're going to go to this rad onc in two weeks and see what he says. So in total, Mom has seen the GYN, the surgeon 4 times, the onc twice, and her family doctor once since March when they found the nonspecific "thing" on the sono, not to mention getting opinions from 3 different pathologists and going to another onc in the near future. Whew! I'd say that little speck doesn't stand a chance Smile

  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Hi Dookiedook, I would definitely endorse the idea of getting a second opinion with another oncologist.  I might even get a second opinion on the pathology slides.  That borderland between ADH and tiny amounts of DCIS is tricky.  It is good that they were able to determine that it is low grade DCIS.  That is one bit of support in favor of very conservative (rather than aggressive) treatment, as well as the size of the lesion.  I agree with Beesie, that the margin is not as wide as it potentially good be (according to some standards).  Maybe a second opinion on the path slides would help with this as well.

    I guess you are following up with the radiation oncologist.  That individual might even surprise you and say that rads aren't necessary.  Very often for DCIS, whole breast rads are given, which would clearly be overkill.

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