Is DCIS Follow Up Necessary after 2 years.
It will be 2 yrs October since my last dx of dcis. My followup has been 2 mammo's and 1 mri. Forunately so far they have been clean...no apparent dcis. I no longer have a bc surgeon for followup. My primary doctor requested me to go back to my first surgeon (because she specializes in bc patients). I couldn't do it. I felt silly going to see a bc surgeon when I no longer have bc. My second bc surgeon was way too busy to even get an appointment and too busy to send me the results of my mri. Plus, I don't think she thinks it's necessary for me to be followup other than to recommend that I get a once a year mammo. Next month is October, which would be my six month follow up of an mri or maybe another mammo.
I'm not sure what to do. I'm beginning to feel safe, and not as concerned about a recurrence. Part of me says to just keep doing what I'm doing, and April or early May go in for a yearly mammogram. If I was dx with dcis again, then it would probably be early dcis, and I would feel more comfortable seeing a bc surgeon.
Also the radiologist said that I only need to be seen once a year. Good news, but I see that so many women on the board, who have been treated see their bc, visit their doc's every 6 months. I feel a little frustrated about all this.
Comments
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After my left mastectomy 7/09, and no futher treatment, I felt like I was hanging out on a limb, nowhere to go. I had seen a medical oncologist who just recommended yearly MRI. I decided to seek a second opinion for follow-up from another medical oncologist, who turned out to be the best thing I did. Her philosophy was that the diagnosis of cancer was traumatic, DCIS, just as traumatic to come to terms with as more involved cancer. She would see her patients at 3,6 & 12 months just to be sure they were coping with their diagnosis, answer any questions that came along during that first year, and then encouraged me to make an appointment any time I thought I needed to be seen, even if just for peace of mind. I see her now, yearly, and alternate mammo or MRI every 6 months. There is no real need for me to see the breast surgeon. His job is kind of "done." Personally, I think I'll see the oncologist yearly until my 2 year "anniversary." I know she's available if I need her, however.
Diagnosis: 7/15/2009, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR+. Left mastectomy 7/27/09.
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After my left mastectomy 7/09, and no futher treatment, I felt like I was hanging out on a limb, nowhere to go. I had seen a medical oncologist who just recommended yearly MRI. I decided to seek a second opinion for follow-up from another medical oncologist, who turned out to be the best thing I did. Her philosophy was that the diagnosis of cancer was traumatic, DCIS, just as traumatic to come to terms with as more involved cancer. She would see her patients at 3,6 & 12 months just to be sure they were coping with their diagnosis, answer any questions that came along during that first year, and then encouraged me to make an appointment any time I thought I needed to be seen, even if just for peace of mind. I see her now, yearly, and alternate mammo or MRI every 6 months. There is no real need for me to see the breast surgeon. His job is kind of "done." Personally, I think I'll see the oncologist yearly until my 2 year "anniversary." I know she's available if I need her, however.
Diagnosis: 7/15/2009, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR+. Left mastectomy 7/27/09.
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I took the initative to get my 6 month mammo's and one alternate mri. Oct is approaching my 2 year dx mark, where if I was being seen by a cancer doc, I would have a mri. I'm tempted to wait until Spring to do my yearly mammo. My primary doc says I should be sure to get my yearly mammo. In my gut, I'm a little unsure what to do. Most likely, I'm ok.
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I'm still going through treatment but my BS told me even before my first lumpectomy that I would be seeing her for the rest of my life. (Still not sure if this will be the case, but that's what she said.)
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Hi Barry,
Do you have decent Insurance? If so, why not? I also will see my breast surgeon for life. It's just the way he does it. I had a mammo/us every six months for two years. Now I go once a year for the mammo, then see the surgeon to look at the films and for an exam. Six months later, I have an MRI, and then see the surgeon as well for an exam.
I'm thinking about having an MRI every two years, but haven't made a decision yet. I see the oncologist once a year for tamox.
I figure that considering how much we pay for insurance, I might as well get the best care.
It may sound like alot, but I really want to make sure that IF I ever get anything back, I want to make sure that it's caught as early as last time. It was awful to get the DCIS DX, however, it was not a life threatening event, as we all know. I want to try and prevent that as much as possible.
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If I had previously been diagnosed with DCIS twice, I would continue to be seen every 6 months.
As it is, I think I'm supposed to be seen by my surgeon every 6 months for the 5 years following diagnosis (but I'm not really sure about that).
I'm between 6 and 12 months from surgery, so I haven't asked those questions about future appointments. Those are the questions I'll start asking next time.
(My nipple is being weird, so I'll probably call for an appointment soon anyway.)
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My situation is a bit different since I had a single mastectomy. But I am high risk to be diagnosed again in my remaining breast, so there is a parallel. I no longer see my breast surgeon; after two years, he turned me back over to my PCP. I could have continued to see the oncologist but since I'm not on any treatments for BC, I didn't think that this would be a good use of his time or my time.
In handing my care back to my PCP, what my BS did was ensure that I would have the proper follow-up. He told me to continue to get my screenings done at his hospital rather than at my local facility, so that if any abnormality ever shows up, he will have immediate access to the information and he can see me if necessary. Additionally, he told me to make sure that I continue to get alternating MRIs and mammos, every 6 months (i.e. annually for each but on an 6 month schedule). So although he stopped seeing me, he set the schedule for my follow-ups, he's ensured that my films are viewed by the radiologists that work with him, and he's ensured that if there's ever a problem, I can get back in to see him right away. That works for me. I can appreciate that as a top surgeon who is in high demand, his priority and time should taken by those who are newly diagnosed or currently in treatment. And I don't need to see him - there's no magic to the physical exam. My cancer last time became evident through calcifications and calcifications aren't going to be found during a physical exam. What's much more important is that I'm checked either with an MRI or a mammo every 6 months, and that my films are being read by radiologists he knows and trusts. The fact that my PCP does the physical exam and schedules my MRIs & mammos and presents me with the results really doesn't matter.
So the net of it is that yes, I think that follow-up - and more importantly, regular screening - is necessary after 2 years, but I don't think it matters which doctor you see.
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At the advice of my N.P. I went to see an oncologist. She felt this was the only way I could get a mri....Funny...the oncologist never showed up for the appointment...never met her. Guess this is a sign?
Diagnosis: 11/27/2008, DCIS, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2+ -
Namaste!
I had a BMX with SNB and attempted reconstruction with TE that was aborted because of skin circulation issues. Dx was multicentric DCIS on Rt. and ADH on Lt. I saw the BS 4 days after surgery and he said I didn't need to see him ever again. Incision folow up was with the PS whom I am still seeing and will have another reconstruction attempt with TE next week. I saw the oncologist in the hospital the day after surgery, the week after surgery and 6 weeks after the surgery. He said that the only follow up I need is monthly self exams and annual physical exams by an MD. He recommended I do this follow up with him since I had a lot of questions. He said that because it was DCIS and that I had BMX and that the pathology specimens were reviewed by 4 pathologist in 2 different centers (here and at Mayo's) that I would not need any screenings with MRI or blood tests. I plan to time my visits with the oncologist 6 months after my annual physical with my primary MD. Not having "testing" or "screenings" makes me somewhat anxious. I understand that no further treatment is recommended other than the surgery that I had but it just doesn't seem like I am doing "enough".
Karla
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I had DCIS in my left breast, strong family history, BRAC1 and 2 negative and I opted for a BMX, had it in February.
I saw my breast surgeon for my six month follow-up last week and she said I will see her every year for the rest of my life, even though it was 'only' DCIS.
I see an onocologist and will see her every year as well. I lost my mom to BC last year and my insurance doesn't cover that particular onocologist, but she was my mom's (we loved her) and I really trust her and so I will gladly pay out of pocket to see her, simply for my own piece of mind.
It may not be necessary, but I need the peace of mind that I'm doing everything I can to keep it from coming back.
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I believe that NCCN standards call for an annual mammogram for the rest of your life, and a twice yearly breast exam for 5 years after DCIS. Many women have more imaging, a lot depends on what you want and whether your can afford it.
The breast exam doesn't have to be with a surgeon, it can easily be folded into other appointments with your GYN, Onc, or a PCP.
I think at 2 years I would keep on the 6 month schedule.
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I had DCIS during the summer of 2008.....My BC wants to see me every year for five years. Each year they do a diagnostic mammogram....I feel good abuot seeing her...Sort of makes me feel that someone is taking care of me, and keeping an eye out for more cancer....
Sandy from Cincinnati
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Hi-I had DCIS in Sept 2008 and see my breast surgeon every six months for I think the rest of my life. Just curious Dawn-why do you see an oncologist? I understand you said for piece of mind, but does she do any specific follow-up tests that maybe I should be concerned about?
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Not trying to scare anyone as everyone is different. I personally would do all of the follow ups the docs suggest.
I was dx with DCIS in 2003. Three surgeries with no clear margins. Did double mastectomy (by choice of the good breast) which had clear margins. NO chemo, rads, meds....follow up with surgeon every 6 months for 5 years, than once a year for life. Surgeon said we could do MRI's but chances are I would be the first to find anything first. He was exactly correct.
I saw the surgeon Feb. 2010, he felt nothing and I felt nothing. In April, I found the lump. Yes, cancer again. This time I am a stage 1 (thank goodness) IDC 1.8 CM with DCIS this time. Two surgeries, port placed and removed, chemo just finished, starting rads this Thursday.
I told him that I want to be extremely proactive this time...no messing around. In 6 months he will order a routine ultrasound and a follow up MRI. Then, in the future, we are doing as much as the insurance will allow...example MRI every year or two.
Surgeon---follow up with him every 6 months for five years and once a year for life (just like the first time)
Cancer doc--every 3 months for two years
Rads doc--not sure yet
Gyno--still have to talk to them once I am on Tamoxfin but atleast once a year, maybe every 6 months
Are the appts. a bother to stay on top of and go to? YES
Are they worth it? YES, but only in my opinion
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I just had a BMX/ 1 prophy for 4mm DCIS/ Commedo/ ALH. Saw Rad Onc 1x prior to sx, opted out of radiation. RadOnc told me that I would not need to see Medical Onc. My BS wants to see me every 6 months for 5 years.
So what do we look/ feel for lumps, changes? No mammo's obviously. Has anyone pressed for MRI's?
Blessings to All
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Brazos: Yes I push for MRI - since none of the other testing caught the small DCIS I have a breast MRI every 2 years now (1x a year for first 3 years).. and while they are checking for cancer they also check the breast implants (which is also required).. I push the insurance company and since the original "push" I now get them without too much trouble... Good luck, and if you push be prepared to offer your level of risk not only for breast cancer but also other family cancers.. if you have a great deal of cancer's in the family it would be advised to see a genetic counselor.. the insurance company won't want to pay for that either, so another "push" might be necessary.. Best, Deirdre
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So what options should we push for after having a BMX for DCIS. MRI, ultrasound, mammograms??? How often?
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Mantra - If you've had a BMX, you won't have any more mammograms. I'm not sure about ultra-sounds. MRI's ... that's the question. I have silicone implants so it is recommended three years after the implants and then two years thereafter to get an MRI to check for leaks. I'm not sure what the protocol is for MRI's if you don't have implants. .
CAROLMARIE427 - I saw an onocologist because at the time my mom was in the hospital dying from breast cancer and I was just diagnosed and I was there, she was there, she was mom's onocologist, I was scared and so I went to her for her opinion. When I decided for BMX she asked me, "Why do you want to keep seeing me?" I told her that I wanted her to keep a close watch on me. I don't think it is protocol, but I don't want to go through what my mother went through. She does blood tests, checks for cancer markers ... and I'm going to ask her to check my vitamin d levels (I see her this coming Tuesday). My ob/gyn blew me off when I asked about this test. Made me angry, really. And since I'm seeing her Tuesday I'm going to ask about it. Long, rambly answer ... hope it helps.
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Hi Dawne-Thanks for replying. I complete understand because my mom died of breast cancer at 47. It still is scary even though we only have "DCIS". I don't blame you for the close watch. Hugs-Carol
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Hi,
I had DCIS and bilateral mastectomy with reconstruction (LD flap & implants) in March 09. My breast surgeon says I will see him every 4 months for 3 years, then every 6 months for 2 years, and then once a year forever. I just saw him yesterday. He felt for lumps, asked me if I felt anything unusual, and that was it. I am glad I will see him forever because it does make me feel like someone is monitoring me for any changes.
I asked for and got a baseline MRI when I was 1 year out of surgery, and now I will get an MRI every 2 or 3 years (I forget which) because of the implants. The breast surgeon said that the MRI for the implants is also used to look for any other abnormalities.
My plastic surgeon is also going to see me once a year for life, to check for any changes in the implants because they don't usually last forever.
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