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BethL
BethL Member Posts: 286
edited July 2016 in Just Diagnosed With a Recurrence or Metastasis

Hello sisters, I was diagnosed with a recurrence after 10 years. I got too comfortable after so long, but then this ugly disease showed back up. At 38 I was diagnosed with DCIS with minimal invasive IDC, Underwent a segmental mastectomy and mammosite radiation, followed by 5 years of Tamoxifen. I've had a few scares over the last few years, but everything always came back fine. I had an MRI (do them annually) in February, followed by a biopsy that came back as fat necrosis. I have a lot of scarring from previous treatment. Then a few weeks ago I was in the tub and noticed a bluish area towards the top of my nipple, I thought it was something on me so I tried to get it off. When I did that, a drop of blood came out of my nipple. I knew then something was very wrong.

I underwent a ductogram - which came back as no evidence of malignancy but was scheduled for a ductal excision because of the bleeding. The doctor called me after 6 days later and told me it was invasive ductal carcinoma. She said it was 7mm and that the pathologist report stated 0.1mm margins-too close obviously. Since then they corrected the report to say 1.0mm. I was supposed to have an MRI last week to check for more cancer. Radiation oncologist said they would reirradiate me if I wanted because the first time was partial. But two weeks after my surgery I ended up getting a severe systemic post op infection that put me iin the hospital for 4 days. Now everything is postponed so I feel as though I'm in limbo with no plan yet. The MRI is rescheduled for 2 weeks and now a bone scan because of tailbone pain I've been having.

I'm very confused about what to do. I don't think I trust the MRI anymore after it didn't show cancer in February. Tossing around whether I should just have a mastectomy, and if so unilateral or bilateral? Is 1.0mm really a clear margin? And why was the wrong measurement in my original report? Ugh. I'm losing faith in tests. So much to think about. Do I really want to go through more radiation, and now do I have bone mets? I can hardly sit down. The xray came back fine, not sure how reassuring that is for me. I'm raising my kids on my own and I know everyone here knows exactly how I feel, it's hard to talk about my "stuff" with others. Very overwhelming. So here I am, and would love to hear any advice I can get.

Beth

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Beth, we're so sorry you're back, and dealing with this new diagnosis. Though we are glad we are here for you and we're sure our other incredible members will be by shortly to Welcome you back.

    We can understand the distrust in the tests you've had -- maybe a consideration for a second opinion is in order?

    Let us know how the MRI and bone scan turn out. We're thinking of you!

    --The Mods

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  • Maureen1
    Maureen1 Member Posts: 614
    edited September 2015

    (((Beth))) I'm sure you'll hear from others soon who will share their wisdom with you...for now I wanted to send you hugs and support, I'm so sorry you're being blindsided by this beast after 10 years - and so tough to have to wait for a plan...I hope they get things sorted out soon. Even though my margins were good and I had a good response to chemo I still had a BMX - I know that's no guarantee that it won't come back but I'm just not good at "watch and wait" so I'm glad I did it. I understand your concerns about the accuracy of diagnostic tests - nothing is totally reliable. I had very dense breasts and lots of cysts so mammograms were useless for me - the radiologist estimated that my annual mammograms and ultrasounds had missed by IDC for "years". I also had a bone scan last year due to bone pain - never thought I would be so happy to hear I had arthritis but that's what the bone pain is and Celebrex is doing a great job on the aches. Hope you get the MRI and bone scan results soon...let us know how you're doing, (((Hugs))) Maureen

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  • BethL
    BethL Member Posts: 286
    edited September 2015

    Thanks so much Maureen. I believe I'm in really good hands as far as my surgical oncologist. Never had an gen oncologist on the first go round. The radiation oncologist and surgical onc treated me and wrote for Tamoxifen. We are so vulnerable to so many people. The radiologists and pathologists that diagnose us are human. That worries me, just saying. I have changed my surg onc to someone who has treated many of my friends and who works where I work. I wasn't very happy with the one I had 10 years ago. I am leaning towards a BMX as well. I just fear that something else is still in there...hiding in all the scar tissue and fat necrosis. I know that doesn't necessarily mean that cancer won't come back but I'm just kind of done with these things.They were valuable when I nursed my kids (I breastfed the last child with bc and didn't know it), now I hate what they've done to me!!! I'm trying to stay calm, but ugh!!

    My xray came back with no abnormalities, but several pelvic phleboliths which I believe are pretty common. Pain is still there, hard to sit still sometimes. Bone scan is scheduled for 29th, and MRI the 30th.

    Beth

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  • megryan57
    megryan57 Member Posts: 83
    edited September 2015

    I was diagnosed with DCIS a few months after experiencing a bloody nipple discharge (in 2008). I had a ductal incision, mammogram and breast MRI, none of which contributed to the diagnosis. Only the actual biopsy found the cancer. Because it was measured at 7cm they wanted to take the whole breast. My difficult decision was whether or not to opt to remove the other healthy breast. If I did not opt to take the healthy breast, I was looking at mammograms and other screenings every 3 months forever. How could I possibly trust the mammogram to work when it didn't work on the breast that DID have cancer? I would never trust it and be forever stressed. That is why I opted to have both removed. I have not regretted this decision. Unfortunately I'm back on these message boards because the pain has returned after 3 1/2 years being pain free:( I don;t know why or what to do!

    But good luck to you. It was one of the hardest decisions I've ever had to make.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2015

    Beth, I am sorry you are dealing with this again. I had a recurrence 14 months after finishing chemo. I had an MRI and it showed all was clear. When they did the re-excision though, they found a second small tumor present several centimeters from the other one. I do therefore understand your reluctance to trust the MRI. It is hard being in limbo without a plan. I hope yuo get a plan soon.

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  • BethL
    BethL Member Posts: 286
    edited September 2015

    Thanks for the replies, you have validated my fear of MRIs not showing cancer.That is tough, because I keep hearing how MRIs are recommended for high risk patients and felt like I was going to be ok. I felt fortunate to be able to get them every year, thinking I would never miss a cancer. Now I'm pretty set on choosing a mastectomy. Now to decide 1 side or both. Ugh. I have the repeat MRI (why?) and bone scan this week, then an appointment with the surgeon two weeks after that. After my excision and post op infection I have a very small area in my incision that still hasn't healed, and is still draining clear fluid. My guess is the healing is bad because of previous radiation, so I'm worried how a mastectomy and reconstruction are gonna take. This waiting is horrible.


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  • Free123
    Free123 Member Posts: 84
    edited September 2015

    Hi blloving! I'm so very sorry you are dealing with this! Even tho I am not where you are, I would do a double mastectomy with reconstruction if possible- the advances that have been made in 10 years are amazing. I have read many posts about reconstruction after radiation. I am sending you prayers and well-wishes for healing!!

    Blessings and Hugs!!

    Freeland

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  • Maureen1
    Maureen1 Member Posts: 614
    edited September 2015

    (((Beth))) I had a bilateral mastectomy and I do not regret it, I just wanted them both GONE, but I did not have radiation so healing may have been different for me? I had direct to implants - no TE's so it was one surgery, skin sparing mastectomy with implants immediately inserted. The non cancer side healed quickly and has had no problems at all. I did develop a capsular contraction on the cancer side but that was fixed with a brief procedure and no problems since. I still have sensation in the skin so that "feels normal":) Good luck in your appointments and scans, I hope things go smoothly for you, (((Hugs))) Maureen

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  • marijen
    marijen Member Posts: 3,731
    edited July 2016

    BethL, this is so upsetting for you. I am wondering if you do have cancer in your tail bone, could it be a different kind of cancer? Or something else entirely. Please keep us updated.

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  • Maureen1
    Maureen1 Member Posts: 614
    edited October 2015

    (((suersis))) so sorry to hear your news...to think that this beast can lurk for so many years is frustrating...they need to find a cure, something that can knock it out once and for all but...sigh...that's not an option today...we'll be thinking of you as you get your test results, (((Hugs))) Maureen

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  • BethL
    BethL Member Posts: 286
    edited October 2015

    Update: repeat MRI showed no cancer - I don't believe them anyways. Cyst found in liver and right breast (the good one-if there's such a thing). Path from my original biopsy shows DCIS in the margins, IDC with clear margins. Again - I have little faith in any of it. Can't help it. Sacral x-ray showed nothing. Bone scan was clear exccept for mild uptake in shoulders - most likely representing normal aging stuff. So that helped a little alleviate my fears. Tailbone still painful. Chemo won't be decided until after next surgery's path is back.

    So the options given to me were re-excision with reirradiation, unilateral mastectomy, bilateral mastectomy. I met with plastic surgeon yesterday whom I love and comes highly recommended.He said if it were his wife, he'd encourage her to do a bilateral mastectomy. That even though I'm not BRCA - something is screwy to get breast cancer twice, but that it was my decision. How could I decide otherwise? I left a message with my surgical oncologist to tell her I'm going with the bilateral. I love her too - very lucky to have such a great team. The PS said it would be a vertical incision mastectomy - never heard of that, and he would put in TEs after she (surg onc) was done with me. Any one had verticle incisions?

    Surg onc also said that I probably need a total node dissection because she doesn't think she'll be able to map to the sentinel node because of previous surgery and radiation.

    It's been nearly two months since my original biopsy - I'm ready to do something. Very worried because I'm in school and raising kids alone. Not sure how this will all work out, but my mom said she would come and help and I'm dating an amazing man I met in early July and won't leave!!! Unreal - his mom died from breast cancer 35 years ago, I figured this would scare him off. I actually tried to end things when I found out, but he said he's in it and won't leave. Not sure if I'm lucky or he's crazy, lol.

    Beth

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  • BethL
    BethL Member Posts: 286
    edited October 2015

    Suersis - I'm so sorry you're dealing with this again. Dogs are the best therapy, I have 3 and am appreciating more than ever the greetings every night after work. I come into the kids arguing, but my pups are all over me!!

    Not many understand our fears. So often I heard, oh it's been ___ years, you're cured! What? No, the truth is we never know. A good friend of mine had a recurrence after 15 years, another after 10 years, and now us. It's a horrible thing to have to think about everytime we have an ache or pain. I wish this on no one.

    I will be praying your pulmonologist and oncologist come up with the best plan for you - keep the leash nearby and keep us updated.

    Beth

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