Recurrence found on MRI one year after initial diagnosis

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Mememee
Mememee Member Posts: 57
edited June 2019 in Just Diagnosed With a Recurrence or Metastasis

hi friends. I went for my first post surgery (w immediate reconstruction) MRI the other week. My oncologist was hesitant to order the MRI since she felt it was extremely unlikely I would have a recurrence. Funny enough the mri showed a 1cm x 2 cm lump at 10 o’clock in my right breast. I am only 47, and breast cancer was my second primary cancer. Now my oncologist wants to wait and see how it grows over the next 6 months. This worries me. I have always gone for mammograms since the age of 40, at the age of 44 I had a clear mammogram and 12 months later I had DCIS. The surgical oncologist said my cancer was very aggressive since it grew so quickly in just one year. Has anyone else had a recurrence within a year or so of the initial diagnosis? If so how was the recurrence treated? I thought cancer was behind me

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited June 2019

    I have not had this exact experience but wanted to clarify that, with a 6cm lesion, your previous treatment was mastectomy since you say you had immediate reconstruction. So, now there’s a lump in the same breast which was removed. I’m having trouble envisioning this scenario.

    Also, because this is a second primary and you are probably pre-menopausal, has genetic counseling been suggested? Perhaps you have strong family history and/or dense tissue making MRI part of your screening plan.

    For me, the two tumors were found at the same time although the ILC presented first. A tiny area of IDC showed up on imaging done to more fully assess the size of the initial discovery (the ductal spot was not seen on mammogram due to the position high under the arm). Had the scan not located an additional location of concern, it might have grown until it was palpable and then been classified as a recurrence...


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  • Oceanlove25
    Oceanlove25 Member Posts: 28
    edited June 2019

    Hi everyone,

    I realize that as I post this...I'm not sure what is going on. I was diagnosed in Jan with invasive ductal carcinoma, surgery and lumpectomy in Feb followed by 4 weeks of radiation including a week of boost.
    Fast forward to bloodwork that showed a poitive ANA test so I don't know if that has any impact. I found a lump in my armpit (non cancer side) and saw my primary today. She saw it too and ordered an MRI which will be done tomorrow am. She said that the MRI would pick up much more.
    My game plan was working to have reconstruction/breast reduction in a month or so. I found many doctors don't want to work on a radiated breast. I did find one that deals with problems such as oncology wounds , radiation etc. But it seems that is now on hold. My gut tells me the cancer is there and now I have other decisions. When I saw my original surgeon I would have preferred surgery and reconstruction at the same time...even a mastectomy. He pretty much talked me out of the mx saying there is no difference in recurrence with a lumpectomy over a mx. So, here I am again in the waiting phase and I guess needing the time to vent.
    I realize I was not prepared for the radiation and it took it's toll. I would not do it again. So we'll see what happens tomorrow in the MRI....thanks for listening.

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  • Mememee
    Mememee Member Posts: 57
    edited June 2019


    Apologies , my post wasn't very clear about my 2 primary cancers. At 45 I had cervical cancer which was treated with a radical hysterectomy and at 46 I was diagnosed with breast cancer. Yes, I did have a bilateral mastectomy and immediate reconstruction fro the BC. Now fast forward a year later, there is a new lump that showed up on my mri in the same breast as my original BC but in a diff place in the breast area. I was premenopausal at the time of my initial BC diagnosis but am now post menopausal. My BC was 100% hormonal positive.

    I was diagnosed with idc from the biopsy but when they did the mastectomy there was also a small ldc tumor that was not picked up on the mammogram that found their idc.

    It seems too soon to be told that I am having a recurrence. Really in one year?

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  • Mememee
    Mememee Member Posts: 57
    edited June 2019

    hey oceanlove25

    When I was diagnosed originally, I asked my gp for oncologist referrals and any suggestions on how to proceed. She told to me decide what I was willing to do and not do (radiation, mastectomy, reconstruction etc) before talking oncologists. I thought it was an odd suggestion since I was not educated in BC. But it was some of the best advice I was given. The oncologist surgeons offer varying pathways to treat my BC. I wanted to tackle this without having to revisit it in the future so I opted for the bilateral mastectomy. The experts said I would have less than 1% chance of a recurrence in 5 years. Well I fell into the 1%. Even though I did both mastectomy and recon at the same time, it hasn’t helped me since my cancer is back.

    We all make the best decision based on what we are told, the risks and benefits and probability of remission. Don’t regret your choice of the lumpectomy and rads. Every choice has its downsides.

    Good for you for advocating for yourself and if you think something is wrong, aka the lumpin your armpit, it’s important to get it checked out. Hope it isn’t anything to worry about. 🙏🏻🤞🏻

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  • Oceanlove25
    Oceanlove25 Member Posts: 28
    edited June 2019

    MeMeMee, thanks for writing. IT sounds like you had great advice going into the diagnosis. I agree that really was great information. Well just to follow up, I had the MRI and it didn't show anything. I got a call from the nurse and she said 'it didn't show anything and to follow-up with your oncologist for the next step in treatment". I said "So the MRI was clear?" and she said "follow up with your oncologist. I was supposed to do a mammo July 3 and am not sure whether to go ahead with it or cancel. Any thoughts. This was my 6 month mammo after surgery to be sure I'm clear.

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2019

    Mememee, I am sorry your cancer is back again. Mine recurred 14 months after I finished chemo. I would be uncomfortable waiting to see what it does in 6 months, since it's already showing it is not behaving. Mine recurred in 2 spots, and the second, found in surgery, did not show up on MRI.


    Oceanlove, Is the lump in the opposite armpit possibly a reactive node? They can swell for many, many reasons. Hoping your MO has a plan to find out for sure.

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  • Mememee
    Mememee Member Posts: 57
    edited June 2019

    I would ask your oncologist if you need the mammo. MRI and Mammo provide diff info since diff types of tissues are easier to see with each type of test. I do feel sometimes Dr over test us which exposes us to extra radiation and procedures that may provide little benefit. If you trust you oncologist, follow their opinion. Glad the mri was clear.

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  • Mememee
    Mememee Member Posts: 57
    edited June 2019

    KBeee

    Since I had diep flap reconstruction my oncologist wants to wait to see what happens. She said fat necrosis sometimes can lead to a false positive. Honestly I am not up to getting more tests. When I had my MRI my vein collapsed and the contrast got into the muscle of my forearm. Since I have Lyphodema I can get needles on my right side, and my left veins suck. I am going to push for another mri in 2 months. Waiting is risky. Like you, originally only one tumor was expected, but a second was found during surfy, like you. I was hoping for a few years of not dealing with treating cancer.


    KBee, how much time passed from your original cancer and your recurrence? Had you completed any reconstruction before the second recurrence?



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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2019

    Mememee, 14 months after I finished chemo, I was diagnosed with my recurrence. They did a surgical biopsy (they were 99% sure it was benign) simply to appease me, and they were so sure it was benign, they did not do immediate pathology, but rather sent it to pathology after the surgery. It came back positive. Because they had no idea if the margins were clear, they had to go back and do a wide excision a few weeks later. They felt around my the lymph nodes too, and that is when they found the second tumor. I had implant reconstruction (under the pec muscle) about 10 months prior to the recurrence.


    2 months sounds reasonable...6 months sounds too long. They should be able to use your feet if your arm veins are problematic. They hurt more in the feet, but are often good veins since no one uses them.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    I'm sorry you had to go through that Kbee.I don't understand why some drs don't understand that even if there is a 1% that doesn't mean 0%, there is still 1 person in that 100. You were that small percentage in this case and if you had not been your own advocate, who knows when it would have been found. SMH. Thank you for sharing your story. Another good reason to keep speaking up, if you feel you are not being listened to.

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  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    hi all- i dont quite understand something-
    When we are given our percent
    chances for a local recurrence and a metastatic event post surgery - is the metastatic percent
    specific to the locally recurring
    tumour ?in other words, if i am given
    a 12% chance of local recurrence and a 6 % chance of mets- am i to read that
    as i have a 12% chance of a local
    recurrence and a 6 % chance that
    it has spread elsewhere from that recurring tumour?
    somehow i think i have been thinking
    this wrong- as in the met petcent
    is in reference to sny random cell at
    any given time at any point from original
    tumour to now- having metastisized
    ( which i know happens)- am i making
    sense?
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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    Cassie, most metastatic recurrences happen without there first being a local recurrence. The local breast area is adequately treated, but the patient nevertheless develops a metastatic recurrence. This happens because prior to the lumpectomy or MX, and in fact in most cases prior to the patient even knowing she has breast cancer, a few cells separated from the tumor in the breast and either through the lymphatic system or through the vascular system (the blood stream), moved into the body, to later develop into mets (if not first killed off by chemo or hormone therapy).

    In other cases, the patient may experience a local recurrence without ever developing mets. In fact the vast majority of local recurrences do not lead to mets.

    So in your example, the 12% local recurrence risk and the 6% risk of mets are two totally separate risks, and both derive from the original cancer.

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  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    Thanks Beesie for the clarity-
    I am so sorry to hear of those facing
    a recurrence. Understanding our
    risks enables us to make the best
    choice we can- with no regrets-
    Mememee- you can feel
    comfort in knowing that you did
    everything you could- and it sounds
    like you are in excellent hands. They will
    have alot of facts/stats now in gauging best course forward-that can only be
    in your favour-
    ( I still struggle with making a decision
    so I have no regrets re: recurrence.)
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  • Mememee
    Mememee Member Posts: 57
    edited June 2019

    KBeee, you have given me pause. I am going to make an appt w my oncologist to talk about the lump and see if I can get a biopsy done. That will at least provide another data point.

    Part of my apprehension to push on the mri results is because my surgical oncologist died (Dr. Torres-Salichs) of cancer this week. I am nervous about having to build trust with another surgeon, should I need one. He and my plastic surgeon Dr.Flores were a strong team and I trusted their close relationship when it came to surgery.

    You are right, I shouldn’t just wait. I will be my own advocate. Your sharing your experience is very appreciated.

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  • Mememee
    Mememee Member Posts: 57
    edited June 2019

    cassiecanada, Bessie is correct. When it comes to statistics, what I learned in university stats, is the two probability figures- local recurrence and metastatic- are two separate numbers because the data sets are not the same. Both from what I understand from my oncologist would be from the original cancer. the diff being a local recurrence would be found in the remaining breast tissue or on the chest wall vs an original cancer cell getting into blood or lymphatic system then spreading becoming mets..

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