large breasts and DCIS, <1cm

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mevanatta
mevanatta Member Posts: 38
edited January 2016 in DCIS (Ductal Carcinoma In Situ)

I received a DX of DCIS, Grade 2 (intermediate grade) on 2/2/09. 

Was all prepared to have a masectomy(mx) scared to have a lumpectomy because of radiation.

My breast surgeon said that large breasts are harder to radiate and once I have radiation it is harder to reconstruct the breasts.

She said that I could opt for a Bi-lateral REDUCTION (giving me a set of perky c's or whatever size I wanted.) Then I could go for the radiation and Tamoxifen.

The reduction would allow them to take larger margin and leave me looking good.  ( I decided I could make it through radiation)

They took out 1 lb on each breast. Reducing me from a DD to a C cup. They left a little extra in my left breast due to radiation "shrinkage."

When it was all said and done.. they removed 2mm and it was right in the center of the removed tissue. Basically, they removed enough tissue to equal 1 small breast.

I went to see the radiation doctor(whose wifte is a BC survivor of 10 years)  and he said it would be overkill to radiate with such large clean margins. Once I use radiation once.. I can never do it again.  He left the decision up to me.

My decision has been to NOT do the radiation. To enjoy my new rack and if the DCIS comes back in 2, 5, 10, 15 or 20 years.. at least I had a little more time to have my "girls."  At least, I will still have another chance for a lumpectomy and radiation. In 10 years, if I had a reoccurance could choose to have a masectomy and a better chance for reconstruction.

Evidently, this is a new way of thinking for a lot of surgeons about the large margins or even considering breast reductions for large breasted women. 

I wanted to put this out there so other large breasted women are aware of this treatment and to see if anyone else has done this procedure.

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  • roseg
    roseg Member Posts: 3,133
    edited April 2009

    i think that's very reasonable and you should be glad you found a Radiologist who was honest with you. The thing I've always heard about Radiologists is that they'll radiate anything with a Blue Cross/Blue Shield card Undecided

    5mm is a size that is often mentioned as the start point for radiation with DCIS. Since your spot was so small I thik your should feel confident you are doing the right thing.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited April 2009

    I agree with Rose and would add that I appreciate your putting this "new" approach out there, as I also think most Radiologists would radiate if given an opportunity.. your "blessing" is probably that this mans wife was a breast cancer survivor and she is probably "teaching" him...  If I had had large breasts to begin with I would have gone looking for such an approach, but being a small B to begin with didn't allow me that.  You have thought this through well, had good doc's, and I hope you NEVER have a recurrence but if that should happen you do have another opportunity to do more!!  Good Luck with the new "girls"...  Best

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  • louishenry
    louishenry Member Posts: 417
    edited April 2009

    I had a tiny amount of DCIS about two years ago. My margins were over a centimeter. Radiation was not recommended, and I was thrilled. Good luck to you.

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  • Beesie
    Beesie Member Posts: 12,240
    edited April 2009

    Thanks for sharing!  I think if you have DCIS and have enough breast tissue so that your surgeon can get really large margins and still leave you with a nice breast, that's a great way to go.  From everything I've read, margins are the most important thing for those who have a lumpectomy for DCIS and if you have good margins, radiation may be overkill.

    I responded to an earlier post of yours about DCIS and HER2 status.  Reading your post today, I take it this means that you've decided not to participate in the HER2+ clinical trial?  If so, I can't say I blame you. Why have radiation if it's really not judged to be necessary?

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited April 2009

    I'm not sure what else you are doing to prevent a recurrence, but beware, as my surgeon said...dcis can jump around. My first bc surgeon was happy she got very wide margins. The next year dcis was found again...they were a little confused if it was a recurrence or new one....and shocked that I had a recurrence.  I've learned after the second bc..that once you had breast cancer, you are at a 50% higher risk for recurrence. My surgeon said, sometimes breast are sick and make cancer cells..hopefully not your case, or mine. I am sure your doctor will make sure that you are carefully watched.

    It's great that you are keeping your breast. I never appreciated mine until I thought I might lose them. Hopefully soon they will come up with a treatment where women won't be forced to lose their breast. I hope so ... soon! 

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  • baywatcher
    baywatcher Member Posts: 532
    edited April 2009

    I think you were really lucky to have a Radiologist that told you the truth.

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  • mevanatta
    mevanatta Member Posts: 38
    edited April 2009

    Thanks to all for your comments.

    I am taking tamoxifen, changing my diet to more veggies and fruit...

    and yes Dr Rine is absolutely the best.  The docs, 2 breast surgeons, 2 rad oncs, 2 med onc, 2 plastic surgeons all get together every Mon to discuss the bc cases at Wichita Clinic.  They talk it out amongst themselves and fight out the second opinions.   They have a top-notch model of care here.

    My dear husband(DH) asked him if he would do it if I was his wife and he said no... he shook our hands and said he hated to lose a new customer. 

    I am supposed to have diagnostic MRI's for 6 months for the next 2 years and a pelvic exam in 6 months and then 1 year and each year after that.

    Beesie - that is correct.. I will not be doing the study for HER2+

    Barry - did you take tamoxifen?  What grade were you High, intermediate or low grade?

    I admit I do wonder if I will have a reoccurence.. but shoot me and the "girls" are feeling good today and I felt good yesterday.. I will deal with a reoccurance if and when it happens.  But today, was good. (only 1 hot flash)

     I am so blessed our insurance has no deductible and no co-insurance.. I only had some co-pays and a $200 co-payment for the outpatient surgery. 

    I also found this wonder board for support!!    

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  • louishenry
    louishenry Member Posts: 417
    edited April 2009

    Mevanatta,

    The chance that your pathology has a DCIS that skips around is unlikely. Low and intermediate grade  (that has no comedo cells or necrosis) is generally lumped together as low grade. 2mm with really large margins ( over a centimeter) has a small chance of recurrence. Your recurrence percent is much lower than 50%. Mine is about 6% over 10 years. Tamoxifen will lower that about 40%. There are no guarantees, but as the years go by, it seems that more and more top docs are treating DCIS individually, not as a whole. Depending on YOUR path, some sadly will have to have a mast, while  others can forgo rads.  It's good that you are trying tamox. My se's have been manageable. I also get an annual mri and digital mammos and ultrasounds. I always feel that if a mammo can pick up something that small once, it can do it again. Good news for you, Nada

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  • mevanatta
    mevanatta Member Posts: 38
    edited April 2009

    Thanks Louishenry! 

    I just hope my post can help others with the same DX as mine that have large breasts.  Having the reduction literally helped me notonly with the DCIS but with getting the pain relief for my back and shoulders!!!   My insurance as great as it is would have never paid for a reduction without it being cancerous.

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  • Robby
    Robby Member Posts: 126
    edited April 2009

    Good luck.  By the way how large was your margin. I see 1 cm quoted above and in the literature.

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  • ghety
    ghety Member Posts: 478
    edited April 2009
    What an awesome way to deal with DCIS.  New boobs that still have feeling - I'm jealous Wink
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  • mevanatta
    mevanatta Member Posts: 38
    edited April 2009

    I understand from my pathology report that 2.4 mm was the max diameter of the dcis.

    The path report is hard for me to understand but it says...

    "the specimen consists of a 500 gram portion of skin and breast tissue measuring. The tissue measuring 15.5 x 12.5 x 4.5 cm. There is marking needle and white suture in the surgical margin. The small focus does not closely approach any of the margins of excision of  the specimen."

    The report also says "focal ductal carcinoma in situ composed of distended ducts packed with cribriform neoplasm with focal necrosis. Tumor cells show nuclear enlargemnet, hyperchromasia adn occasional mitotic figures." 

    What does cribriform neoplasm with focal necrosis mean????

    It appears they also tested the 525 grams of tissue that was removed from the right breast.  They did not find anything there.

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  • 321JUDITH
    321JUDITH Member Posts: 1
    edited April 2009

    Thanks for that information on DD. I have just had lumpectomy taking Tamoxafen and about to start radiotherapy. No one has mentioned "shrinkage" to me yet

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  • mevanatta
    mevanatta Member Posts: 38
    edited April 2009

    Shrinkage is evidently minimal.  One of my girls is slightly bit bigger but not by much. I am to go back to see the breast surgeon and plastic surgeon  in 6 months.  They always had their appts with me at the same time and worked side by side during the surgery.

    The plastic surgeon said in 6 months if the larger breast is noticeably larger and harder to fit a bra he will take some out.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Mevanetta - I am having this done for IDC - I am a DDD and my surgeon refers to it as oncoplastic surgery - breast cancer surgery with a bi-lateral breast reduction.  I had a lumpectomy on 12/1 with a 1mm clear margin.  As the surgeon needs 2mm and I have wanted a breast reduction, we are doing this after I finish chemo. My tumor was IDC surrounded by DCIS.

    As I will be having radiation, it is important to do the bilateral reduction first as it can be difficult for radiated skin to heal, so I was urged by both my surgeon, plastic surgeon (who will perform the oncoplastic surgery with my breast surgeon) and my brother in law who is a plastic surgeon in a different state) to have the surgery before radiation.

    It sounds like you are very happy - my surgeon says that this is the future of breast cancer surgery for us busty gals.

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  • mevanatta
    mevanatta Member Posts: 38
    edited April 2009

    aprilgirl1   Fantastic!    Yes.. they are referring to it has oncoplastic surgery.   Also, my rad doc(that I did not need)  said it is MUCH EASIER to radiate smaller breasts! 

    I feel so much better not carrying those DD's around.  I did not realize how much the "dragged" me down.

    The healing from the reduction was not too bad.. First few days a little rough. 

    Keep the steri-strips on as long as you can - helps with healing.   I was back to work in 2 weeks.. Each week I progressively felt better and more like myself. 

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  • mevanatta
    mevanatta Member Posts: 38
    edited April 2014

    5 year update - Well I after the 2nd year.. I stopped taking tamoxifen. and diet isn't perfect.  We moved had a hard time getting a good doctor after the move.  Felt great. The tamoxifen just made me feel miserable.  It is the 5th year.  I truly am happy with my previous decision.  This week, the left side has "suspicious microcalcifications."   So glad I didn't radiate.  Waiting on my biopsy.
    We moved back to the area that I lived in when I had my first diagnosis 3 years ago. I am worried... I guess. Been through this once.  Just recently had a total hysterectomy and removal of the ovaries. 
    Thoughts?  1. Glad I had boobs for 5 years.  2.  Right boob is in good shape (keeping it for my husband no matter what until it gets sick!)
    3.  Hopefully this time if it is cancer I will go for a lumpectomy and possible radiation.  

    I will go through many scary diagnosis so that I can keep my girls.  My husband thinks if they remove one... they could move the remaining one to the middle.  LOL.... 

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  • mevanatta
    mevanatta Member Posts: 38
    edited January 2016

    Update: I ended up going with a double mastectomy. I had no real choice. 1.5 years later and I am ok with my implants. They had to re-do them in September.


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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    You did the appropriate thing for yourself at each stage of your cancer.

    Meanwhile, I had a 1.3cm IDC, and so I chose lumpectomy and radiation. But at size 38 I, I wonder if I should have been offered bilateral reduction. Turns out the weight of my breast, coupled with the size of my SNLB seroma, pulled the SNLB incision apart and necessitated having it sutured closed. If I had to do it over again, I’d have requested a plastic surgery consult when planning my lumpectomy and asked to be taken down to DD. (DD I could live with--it’s possible to buy bras in any dept. or even discount store in that size, rather than have to go to a specialty boutique and pay $100 or more). Should, heaven forbid, I develop a contralateral tumor, I will definitely broach the subject.

    (Maybe my expressed desire to be able to take the Mediterranean cruise my husband & had booked kept my surgeon from mentioning the possibility of reduction, as it would have lengthened the time frame for recovery and I wouldn’t have finished radiation in time to set sail).

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  • DecisionFreak
    DecisionFreak Member Posts: 589
    edited January 2016

    I am incredibly grateful to find this thread.Thank you, mevanatta! I have traveled a long, difficult road to deciding on a treatment plan since a diagnosis of DCIS on September 18, 2015.

    I am a 40DD cup. I have had one lumpectomy without clear margins. The next lumpectomy is scheduled for January 26, 2016 at a comprehensive cancer care treatment center and major teaching hospital.

    I could not tolerate Tamoxifen. That left radiation, but I felt strongly that it would be a mistake due to serious pain and fatigue from fibromyalgia. On the advice of a well-known breast surgeon who conferred with my BS, I am scheduled for a breast reduction in addition to the lumpectomy on January 26. I will not have radiation at this time. The surgeon with whom I conferred felt radiation is not a good idea for me.

    I have to make an extra trip to the clinic where I am being treated at the end of this coming week.The PS said she needs to meet with and evaluate me. It is my understanding that since I don't smoke and am able to care for my post-surgical wounds that I should be accepted by the PS.

    So, I have taken the road less traveled. I am 61. I am opting to have the most conservative treatment possible. The consulting surgeon told me she has had very good results for a decade with this approach. It is common knowledge that radiation for low grade DCIS does not improve overall survival.

    I did read a report on a NIH website about breast reduction surgery preceding radiation for cancer patients with large breasts I found the article through a PubMed search. We are supposed to have the full citation if we provide substantive information about scientific findings. I don't have the link but the article should be easy to locate on PubMed.

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