Saw new doctor with different treatment view on DCIS

crystalphm
crystalphm Member Posts: 1,138
edited September 2015 in DCIS (Ductal Carcinoma In Situ)

My doctor passed away, so I had to see a new breast doctor. he felt all was well with me, I am 5 years out, double mastectomy for DCIS no invasion, no micro invasion, clean margins, clear nodes.

Ok, so this new doctor tells me he would have added chemo, radiation and tamoxifin to "treat it properly" I had my ovaries out and was told the tax. was not even necessary.

Have things changed in how DCIS is treated? I am uncomfortable with what the doctor said, but maybe I am wrong to think I am "safe".

He said I am "no evidence of disease" but he would have done things differently. I never heard of chemo and rads for double radical mastectomies with pure dcis. Anyone?

If you were in my shoes, what would you do?

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Comments

  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    Well, I had grade 3 DCIS on the left side, clean margins and nodes, mastectomy. If that had been all, I would have been done. As it happens, I had a different story on the other side, so I got chemo and radiation, but those are associated with a positive node on the right.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2015

    ditto what kayb said!

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2015

    and....if he actually said what he said....I would report him to your state health department AND to the county and state medical societies and the state board of oncology....ASAP!

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  • Obxflygirl1
    Obxflygirl1 Member Posts: 377
    edited August 2015

    that doesn't make any sense at all. Run as far away as you can and quick

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited August 2015

    interesting - my ob/gyn said her sister ( or friend can't remember) did get chemo for DCIS. I was shocked

    Nancy

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited August 2015

    Maybe he misspoke, a little mixed up at the moment?

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited August 2015

    Thank you for your replies, I appreciate the feedback. I live in a rural area, so I know we don't have the top notch doctors at times, but this really threw me.

    I have done so much homework on this, and when he said "I would have treated you differently with chemo and rads and tamox" I was suddenly freaking out in my paper gown and just wanted to leave.

    I wish I would have had the presence of mind to ask him why?

    It is also a worry because I volunteer at a local cancer center and I am just not sure I could feel comfortable suggesting him to anyone...and he is ALL we have!

    But you all have allowed me to rest my over active mind, calm down and feel safer. Thank you.

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  • Meh527
    Meh527 Member Posts: 14
    edited August 2015

    I agree with the others. You just terrified me by what the doctor told you. The standard for noninvasive DCIS that is not scattered throughout the breast but localized (and no other extentuating risk factors) is lumptectomy, followed by localized radiation (not chemo) to the breast and possibly a drug like tamoxifen (especially if the cancer is determined to be estrogen receptive) for five years. That's what my doctor is telling me and that is what everything I've read so far as stated. Right now I'm waiting for the pathologist's report after my recent lumptectomy. I have concerns about radiation because its the left breast and of course near my heart. Will be discussing my heart/lungs with the surgeon next week (and whateve else I can think of). Admittedly, I dont want to take tamoxifen but waiting for what the doctor says and possibly DNA testing. I would get a second opinion.

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  • Liz116
    Liz116 Member Posts: 2
    edited August 2015

    I was treated in a major city. The surgeon is my main doctor, but he defered to the radiologist's recommendations about radiation and to the oncologist about hormonal therapy recommendations. They also discussed my case in their treatment meetings.So what exactly is your new doc's specialty? Did he have access to all your original records, including characteristics of your dcis? Every woman's dcis is different. His response, which causes second guessing 5 years later !!! after your 5 blessedly successful years without recurrence, is psychologically abusive to you, as well as clinically incorrect. In My Humble Opinion. After my dcis diagnosis, with a lot of unclear process, I phoned my general practice doctor, hoping for someone who would have knowledge and perspective but not be directly involved. He said, "there's a 50% chance it will come back, so suck it up" ( referring to doing all the follow up treatments). I should never have contacted him. From everything i have since learned, and i've spent too much energy getting info, he was wrong.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2015

    Crystal, I see 2 ways of interpreting this:

    1. He didn't read your med history and thinks you had IDC and node involvement.

    2. He's a jerk who doesn't know what he's talking about.

    Leah

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  • april485
    april485 Member Posts: 3,257
    edited August 2015

    Nancy, Or another alternative is that your OB/GYN's sister had some invasive mixed in with a lot of DCIS. They will always treat the invasive and the DCIS just comes along for the ride basically. Maybe they did have some IDC or ILC mixed in with their DCIS?

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2015

    What a jerk!! Report him. Even though he would have treated you differently, thats not for him to tell you and scare the hell out of you. The horse is out the gate!

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited August 2015

    Thank you all for your life affirming comments. The doctor is a breast surgeon. It was a different breast surgeon and a oncologist who first told me treatment was complete after the double mastectomy.

    I agree Cowgirl, the horse is out of the gate. And I think if he were truly concerned about me, why would he schedule me for another appointment in a year?

    He upset me terribly, so now I have a choice, to put myself in his line of fire next year or find someone who can talk to me right. Maybe he did read my reports wrong, who knows.

    I do think I will talk this over with my family doctor, who I have a great trust for.

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

    good idea, your family or primary doc who knows you and your past is a great idea

    deep breath and hope all is well

    note, I had DCIS grade 3 and did a lumpie, rads and 5 years of AL, sort of think that is more normal, I live in central NJ the land of a ton of docs1

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  • Morwenna
    Morwenna Member Posts: 1,063
    edited August 2015

    I think one thing to reiterate (as it's been posted above) is that not all DCIS is the same. Treatment options might vary depending on the size of the tumour as well as its characteristics. Here is a rather wordy document that looks into some of this: http://jnci.oxfordjournals.org/content/96/12/906.f...


    All that said, one has to wonder at the motive of your new doctor in telling you that he would have done things differently. At first impression, it doesn't sound very helpful, at the least. As what was done was done, all it is guaranteed to do was upset you. Maybe he lacks self-discipline and was just thinking out loud - flapping his lip!?

    Yes, it would have been good if you had not been too gobsmacked to have asked him WHY he would have done things differently, and what, then, he was advising you to do! It looks like some types of DCIS do appear to have a higher recurrence rate, so was he telling you to be extra vigilant? I'm not sure it is run-of-the-mill to have to see a breast surgeon annually after a double mastectomy, and after 5 years clear.....?

    Certainly chemo is not normal with DCIS ..... deleted remainder of sentence as it was ill-informed speculation, apparently. Sorry !

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  • ksusan
    ksusan Member Posts: 4,505
    edited August 2015

    I fired an MO for stating which hormone suppressant he was going to give me, then revealing that he hadn't checked my records to see if I was menopausal yet. Uh uh. Who knows what else he was deciding without checking first?

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  • lisa-e
    lisa-e Member Posts: 819
    edited August 2015
    In my opinion, a breast surgeon has no business talking about the medical treatment of breast cancer. They are not oncologists. My breast surgeon, who was a great surgeon, told me I would probably need chemo. My medical oncologist had a different opinion.

    I certainly would never see this surgeon again. I agree with the others - either he didn't bother to read your records or he is incompetent. And after five years, I don't think you need to see a breast surgeon. Perhaps your primary care doctor can follow you at this point.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2015

    Hi Crystal:

    I agree with everyone above that he is a dolt. At 5 years out, double mastectomy for DCIS no invasion, no micro-invasion, clean margins, and clear nodes, a breast surgeon like this one seems like excess baggage to me.

    As far as frequency of follow-up, ASCO (American Soc. of Clinical Oncologists) recommends annual medical history and physical exam from the 5 yr point. Here is a link to their web page:

    http://www.cancer.net/research-and-advocacy/asco-c...

    The article at this link (see full text tab) compares various follow-up recommendations in Table 1. NCCN guidelines agree with ASCO about an annual exam after 5 yrs. Note the additional recommended gynecological assessment if on tamoxifen:

    http://dx.doi.org/10.1016/j.critrevonc.2014.03.001

    I had multifocal DCIS (with small IDC) and BMX. I am still less than 5 yrs out and my surgeon (Mass General in Boston) has scheduled my next follow-up exam with her nurse practitioner. She indicated that my primary care physician (PCP) can also do necessary exams going forward. It seems that a medical history and physical exam do not really require the specialized skills of a breast surgeon. Since I am less than 5 yrs out, I just saw my PCP and I am scheduled to see the nurse practitioner at Mass General in six months. My PCP does a nice thorough check of the chest, and of the underarm, neck and supraclavicular nodes. Ask your primary care physician if they are comfortable conducting such checks for you on an annual basis. They should be.

    You can also periodically check yourself on a monthly basis so you can notice if there is any change.

    BarredOwl


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  • crystalphm
    crystalphm Member Posts: 1,138
    edited August 2015

    Thanks so very much to ALL of you! I consider this group of caring intelligent women worth SO much! You are amazing.

    I saw my medical doctor (who I have a 20 year relationship with) and he listened and then said "Denise, listen to me, don't go back to him". He said he had no right to terrify me since I am a 5 year survivor. He wants me to talk to my gyno in 6 months and see if he prefers that I be seen every six months, but he feels once a year is more than enough. And I would see my gyn for that check.

    I do completely agree that if a cancer is invasive, you have to watch it, which is why I addressed this in the thread of DCIS because my DCIS was in situ completely.

    I learned so much from all of you!

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  • trailrose
    trailrose Member Posts: 219
    edited August 2015

    Your medical doctor gave you some sound advice! You were smart to come here and ask questions about your experience.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited August 2015

    Thanks so much...and for me coming to all of you was the smartest thing I ever did!!!


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  • investor03
    investor03 Member Posts: 1
    edited September 2015

    I have a question about the radiation treatment after my DCIS surgery very early stage, not even a 1 yet. I just went through spine surgery about three years ago, and working full time now is wearing me out I can't even think what the surgery is going to do to me since I am the soul supporter or myself. I have to go back to work after the surgery is done in two weeks. I would start some type of radiation treatment threes weeks later what can I expect?

    Very concerned

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015
    I am not a DCIS expert, but hopefully someone who is will be along soon.
    Pure DCIS is always stage 0. What type of surgery are you having, lumpectomy or mastectomy? Recovery time would be quite different depending on the surgery. Everyone is different, but although tiring, many women work through rads. Good luck to you!
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  • ballet12
    ballet12 Member Posts: 981
    edited September 2015

    If you are having a lumpectomy, which I assume, based on the fact that you will be having radiation after that, the surgery is usually (that is... usually) relatively easy. I had three lumpectomies in 2012, and they were all on a Friday, and I was back at work on Tuesday. Two of the surgeries were three weeks apart. I also resumed modified exercise the week after the surgeries. Some women have complications such as hematomas, but, in general, lumpectomies are much much easier to recover from than mastectomies. The radiation is also usually (again... usually) quite bearable. It often causes fatigue (especially toward the end and after), and sometimes causes skin changes such as redness or rash, but they try to prevent that with use of recommended moisturizers. Since you would be having radiation for DCIS, it will only be directed to the breast. If one had invasive breast cancer, the axillary area is sometimes radiated, or following mastectomy, the chest wall is radiated. When these locations are added, it is often more taxing than the whole breast radiation received to the breast alone.

    There are many radiation therapy threads, and it's good to join one while you are going through it.

    Best of luck.

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