Done with Treatment, but now worried about recurrence.

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sierramtngirl
sierramtngirl Member Posts: 30

Hi all. It's been awhile since I've been here, actually shortly after I was diagnosed in October 2017. I had bilateral mastectomies in December 2017 and recovered well, with tissue expander placement. I'm awaiting for my exchange surgery which is now scheduled in a couple of months. I was diagnosed at age 39 with 2.5+ cm grade 3 DCIS w/comedo necrosis. Final pathology indicated that no invasive disease was seen/found. I was nursing my 10 month old at the time so I had a whole bunch of emotions wrapped up in all of this at the same time. I also have a 6 year old and a 3 year old.

I've paced myself in terms of information, so that I didn't get overwhelmed while I was processing my diagnosis. I sort of just "went through" the emotions of just getting my treatment done, because I had to if that makes sense? Now that some time has passed, I'm having to process all of this, and I know its something I need to do. My prevailing emotions are fear, anxiety, sadness and some gratitude thrown in there for good measure.

However, I'm finding myself afraid, constantly. My oncologist said something like, "well, you're cured. Go live your life. See you in six months." And I'm left kind of hanging out here wondering what else there is to do. I want to minimize my risk of recurrence as much as I can, and my onc really wasn't a lot of help. I'm anxious that there aren't any studies to be done (no scans) or lab work. I know that exercise can help reduce the risk of recurrence, but is there anything else I can do? Should I be following up with other physicians as well?

I know that my level of worry is probably unreasonable, and so I'm going to go back to seeing a therapist. But to those of you who have walked this walk, what else can I do?

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  • illimae
    illimae Member Posts: 5,710
    edited April 2018

    My onc said to minimize alcohol, sugar and processed foods in favor of an 80% plant based diet and to avoid microwaving anything in plastic containers. I was diagnosed stage IV at 41, so I am constantly monitored but I can totally understand being anxious and wondering what now? I think it’s mostly bad luck genetically, hopefully you won’t have to deal with this again.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited April 2018

    I felt the same as you when I finished treatment. Aren't there blood tests, or something that should be done? I see a doc every three months rotating between my breast surgeon, MO, and RO. They do breast exams, and ask a lot of questions, plus an annual mammogram, but that's it. Of course they recommend losing weight and exercise. I take Arimidex.I personally have started using safer cosmetics and home cleaning products. I stay away from chemicals as much as possible. But too much imaging is no good either due to the radiation exposure, so unless I'm symptomatic, no one is worried. I just passed my 3 year anniversary of finishing treatment, and I don't worry about things as much as I did 3 years ago. I stay mindful of my body, and I'll be sure to get checked out if I have any weird pain, but I don't think about recurrence all the time like I used to. As time goes by, you'll find that you don't think of it as much either.

  • RoseGinger
    RoseGinger Member Posts: 17
    edited April 2018

    I've been hovering over this website for a year now. I have learned so much about DCIS and want to thank all of you for sharing your stories with me. I think it's time I do the same. Here it goes:

    Last March, 2017 at age 59, I had my annual mammogram. They saw calcifications in my left breast and called me back for additional images. From there, I had a stereotactic biopsy(I've had this biopsy before for calcifications on the right breast in 2014 which turned out B9). Several days later, the radiologist called and said "it is cancer". I was shocked. She then told me I would have to have surgery and radiation. Before surgery my breast surgeon ordered an MRI. Fortunately that was the only area and the following week I proceeded to lumpectomy surgery. My pathology came back DCIS, grade 3 with comedonecrosis and the closest margin was 2mm. I was all on board with the radiation until my regular doctor, suggested that maybe I didn't really need radiation. That threw me for a loop because I really admire and trust him, so I thought maybe radiation was overtreatment. I was torn. I had the radiation scheduled. I read so many posts here and many of them recommended a second opinion with Dr. Lagios. I postponed my radiation for two weeks later. I sent all my tests, labs, etc to Dr. Lagios and he concurred with the diagnosis and emphatically stated that I needed radiation. He also recommended before starting radiation to have another MRI to make sure there was no residual DCIS hanging around after surgery. Well by the time I got his results I was two days into the rads. My RO ordered the MRI (I think he felt pressed to do so because of Dr. Lagios' recommendation.). When the results came back he said everything looked fine and I continued on with radiation. I had 34 radiation treatments, the last 7 being boosts. I had minimal issues and all has been fine since then except some pain in the breast - nothing bad or unusual from what I understand. Fast forward to this year:

    Two weeks ago I go in for my first mammogram since treatment. Three days later I get a cryptic phone call from the technician who did the mammogram. She said the radiologist wants to know if I had any surgery on my breast after the last MRI (the one Dr. Lagios recommended). I said no. She said fine, I'll tell the radiologist. I thought that call was strange. 3 days later I get a call saying they want to do additional images on the left breast. I go in and the technician (a different one) says there are no problems they just wanted to do imaging on the exact area they imaged last year where they found the dcis and there is no need to worry. She said it should have been done during last week's mammogram. I asked if I would have to have another biopsy she said no, everything looks ok. They only re-imaged the left breast. Several days later I get a call from my breast surgeon's Office (he's new, my other one who did the surgery has since retired) and said they saw new calcifications on my right breast, above the ones they diagnosed in 2014 which were benign. They want to do a stereotactic biopsy. OK here's where the weirdness comes in. When I go see the surgeon for consult about the upcoming biopsy, he says that he's also concerned about something in the MRI report that was done last year! This is what that report states:

    There is a uniform rim of granulation tissue surrounding the lumpectomy site in the lower outer left breast, with only one area of thickening of this enhancement, along the anterior/medial aspect of the cavity, inferiorly. This extends up to 3mm. No other additional areas of enhancement to suggest additional neoplasm. Surgical and oncologic follow-up is recommended.

    My new surgeon is concerned about the 3mm. Could that have been residual dcis? He's s going to confer with the radiologist and get back to me. In the meantime I'm scheduled for a stereotactic biopsy in two weeks on the right breast.

    I thought all of this was behind me. Not yet I guess. Any thoughts? Thanks for all your insight. This site and you wonderful people have been a huge source of support for me.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    All I can say is my BS has called DCIS “pretty squirelly”. You can’t feel it, you can’t visually see it during surgery—just really difficult to pin down, I think. I think that’s one reason so manywomen have to go back in to clean up margins (I read 25-40% two years ago). Sounds like your new BS is being super thorough—I’d welcome that!

  • RoseGinger
    RoseGinger Member Posts: 17
    edited April 2018

    Thanks Ingerp. One of my closest friends said the same thing - he’s just being thorough. I do appreciate that. I thought it strange that when they called me back for more imaging on this last mammogram they didn’t even look at the right breast and that’s the one they want to biopsy now. Now it’s the waiting game which is always hard. Patience is not my strong suit!

  • Annette47
    Annette47 Member Posts: 957
    edited April 2018

    All I can say is give it time. A year out I was convinced it was just a question of when. Now, 5 years out, it’s more a sense that it’s possible but unlikely.

  • sierramtngirl
    sierramtngirl Member Posts: 30
    edited April 2018

    Thank you to all who have replied. It really means the world to me. I don't want to be dramatic, but this is a pretty dark time, and knowing that I'm getting support from women who have "walked the path" is very powerful. Thank you all again.

  • Nursepatient35
    Nursepatient35 Member Posts: 166
    edited May 2018

    It's comforting to read your initial post because I know I'm not the only one who feels like this. I found a lump almost a year ago, went through denial that it was nothing, finally got it checked in January and found out it was DCIS. I am only 35 with 3 small kids. I went through a BMX, reconstruction and got my implant exchange. Part of me is like yay- it's all over. I did all the treatment I need and now life can go back to normal. The other part of me goes back to the fact that I had cancer at 35 with no risk factors and it was rare. I obsessively check this site which at this point might not always be helpful. I'm hoping that as time goes back, cancer will not be in the front of my mind. I am a nurse though, and I am always coming across patients who have a new cancer diagnosis or are dealing with treatments. I definitely sympathize with them more than I used to.

    I guess maybe we need to tell ourselves that we can't live our lives waiting for something bad to happen. The good that does come out of this sometimes is how you value the important things in life now. I don't sweat the small stuff as much as I used to. Good luck to you and I hope your exchange surgery goes well. It was nothing compared to the mx!

  • april485
    april485 Member Posts: 3,257
    edited May 2018

    I am 5 and a half years out. You will think about this less and less as time goes by. I promise.

    Ingerp is right RoseGinger. DCIS is a nightmare for doctors to operate on. It is practically invisible. I had to have a second surgery and my BS was really bummed saying "I really thought I got it all" Many surgeons are now doing margin "shaves" to prevent just what happened to many of us. They get it "all out" and then add a cm all around to make sure.

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