What follow up do you have for DCIS with bilateral mastectomy

lifegoeson

Hi all,

In 2009 I had multifocal DCIS and therefore mastectomy was recommended. I chose bilateral mastectomy with reconstruction. My breast surgeon then followed me twice a year for 5 years, and told me he would follow once a year for the rest of my life. This was in New York. Well, now I've just moved to Massachusetts and I went to a breast surgeon to establish a relationship with a new doctor for yearly follow ups. She said that there is no need for any follow up by her, ever. She said that the standard of care is that after 5 years post mastectomy, with DCIS, they don't follow up at all, not even an annual checkup. Apparently different regions of the country have differing opinions on the follow up needed in this situation.

So my question is - if you've had DCIS and bilateral mastectomy, what follow up does your doctor recommend?

I'd really prefer yearly follow ups and a yearly breast exam. I know the chance of recurrence is small, but I don't want to be that 1%, better safe than sorry.

Thanks.

HazelEyes07

Hi Lifegoeson,

I had a double mastectomy in 2010 with reconstruction/implants. I've been going every six months up until this week when I hit the 5 year mark and my current breast surgeon said she will see me every year for the rest of my life. I had the double mastectomy in Maryland and now I live in California. My doctor in Maryland said the same thing; six months for 5 years and yearly for life after the 5 year mark. I've never heard of anyone being told they do not have to follow up after 5 years. I had DCIS in the right breast and found out after the double mastectomy LCIS was in the right breast. I would change my doctor if he/she ever told me that I didn't need follow up.

Nanam

I had a single mastectomy over 3 years ago and get a check up every 6 months from my GP or nurse practitioner.  Maybe the surgeons are thinking its their job to operate if or when a problem arises but not to do the screening.  If you go for a yearly physical with your GP, that should include a breast exam anyway and you could just schedule another breast exam for 6 months after.  Just a thought anyway.

april485

I had lumpectomy, not a mastectomy and my BS is following me every 6 months for 5 years and then yearly for the remainder of my life she said. I live in CT. I guess all protocols are different.

BarredOwl

Hi:

As far as frequency, 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 annual exam. Note the additional recommended gynecological assessment if on tamoxifen:

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

I also had multifocal DCIS (with small IDC) and BMX. I am less than 5 yrs out and my surgeon (MGH in Boston) has scheduled my next exam with her nurse practitioner. She indicated that my primary care physician (PCP) can do the necessary exams going forward. Indeed my PCP does a nice thorough check of chest, underarm, and supraclavicular nodes. Ask your primary care physician if they are comfortable conducting such checks for you. They should be.

I also periodically check myself to be sure there is no change.

BarredOwl

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Diagnosed age 52; Right: ER+PR+ DCIS (5+ cm) with Stage 1a IDC (1.5 mm, grade 2) and microinvasion ( < 1 mm), 0/4 nodes; Left: ER+PR+ Stage 0 DCIS (5+ cm), grade 2 (majority) and grade 3, isolated tumor cells in 1/1 nodes (pN0i+(sn)).

lifegoeson

Thanks everyone for your replies. Thanks for the links, Barred Owl, very helpful! I'm wondering if she meant that I didn't need to be checked by a breast surgeon as long as my PCP does an annual breast exam. I'll call and clarify, but that makes more sense than if she meant that I didn't need any follow up ever by anyone.

LAstar

I've had trouble finding an oncologist to follow me, even immediately after my BMX. I talked with 3 oncs that say it's not cancer - I guess if there's no chemo, it's not cancer to them. I finally found someone to follow me, but he just left his practice and now I have to start all over. He was checking me every 6 months but told me it's not really necessary and to let him know if my bones start hurting. Not reassuring. Maybe I should be seeing a BS instead? With flap reconstruction, I think monitoring is more difficult since mammograms aren't usually done and the breasts don't feel the same. The monitoring options post-DCIS are really frustrating.

trailrose

My BS said he wants to see me at first in 6 months from my BMX then once a year just to make sure he doesn't see anything suspicious. He said between him and my gynecologist they'll keep an extra watchful eye on me. I had my BMX on 1/20/15 for high grade DCIS. I also have a variant in the MSH2 gene which is why he removed sentinel lymph nodes from both sides even though the DCIS was on my right side. He told me he has one patient who three years ago had DCIS on one side so she had a LX with radiation, then got DCIS in her other breast so she opted for a BMX with reconstruction. Then one year later developed breast cancer on the skin over her implant! So it's rare but can happen.