Second local recurrence with no metastasis

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breastfriends
breastfriends Member Posts: 9
edited December 2015 in Just Diagnosed With a Recurrence or Metastasis

I am looking for anyone who has been diagnosed with a second local recurrence of breast cancer with no metastasis and the treatment/outcome you experienced. To date have not found a women with a case similar to mine. I would love to hear your story!

In 2000 (at 36) I was diagnosed with invasive ductal carcinoma, grade 2, ER+ with no positive lymph nodes. I had a total mastectomy and CMF chemotherapy followed by 5 years of Tamoxifen. The cancer recurred locally in 2006, same pathology, no lymph nodes and clear PET scan. I had the tumor removed followed by ACT chemotherapy and radiation.

I was recently diagnosed with a second local recurrence with the same pathology, no lymph nodes and clear PET scan. I moved my treatment to the Mayo Clinic this time and am currently recovering from a "completion" mastectomy that removed the large tumor, most of my left pectoral muscle and remaining breast tissue (left the surgeon of the original mastectomy 15 years ago). My new surgical oncologist was able to excise it all with clear margins.

I will be starting radiation and hormone therapy for the second time because I've been told that second recurrences have high probability of metastasis even if mine isn't apparent on my PET scan. If someone has or knows of someone's case similar to mine, I could really use your help!

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  • pajim
    pajim Member Posts: 2,785
    edited November 2015

    Hi Breastfriends, my mother is the person you are looking for. She had a lumpectomy and radiation about 20 years ago. 4 years ago she had a recurrence, same breast. She had a mastectomy this time along with a sentinel node dissection.

    She takes anastrozole and will for the next few years. Otherwise she is fine.

    Truth be told I don't think they did a PET or a CT. I'm pretty sure I would remember if they have. The tumor was small and the sentinel node was negative.

    It sounds like your tumor was a lot bigger, but as they didn't see anything on the PET, you should try not to worry. If the cancer cells have escaped the breast there's nothing you can do about it. Sounds callous but it's true. Actually, the best thing you can do about it is take the hormonal therapy.

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  • amygil81
    amygil81 Member Posts: 165
    edited December 2015

    Breastfriends, I'm sorry to hear of your difficulties. I only had one local recurrence, but apart from that, my case is somewhat similar to yours. I had a mastectomy for DCIS in 2000. I didn't have chemo or rads, because it was only DCIS.

    Then my BF found a lump under my scar in 2009. On biopsy, it turned out to be some of my original tumor cells, now turned invasive and growing into my chest wall.

    They did scans on me to detect distant mets, which they did not find. That made me stage III and not stage IV. My surgeon removed my lump and some surrounding muscle tissue, going down to the bone in one spot. I call it "my upgrade surgery." He also took out 10 of my axillary nodes, of which two were positive. After surgery, I had two kinds of chemo, then radiation.

    My treatment took about a year. It pushed me into menopause at age 42. The node removal and radiation made my lymphedema worse. But I'm still here, NED, five years after my second dx. I wish you clean scans, a skilled surgeon, and not too bad side effects.

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

    Sorry you're dealing with this again. I had BC in 2013, had a recurrence earlier this year in February (recurred in 2 spots), and just finished chemo and radiation back in October. I was node negative both times. I now have a new lump which will be evaluated next Wednesday. I am hoping it will not be another recurrence. So I am not in your shoes yet, but I might be soon. Keep us posted on how you're doing. Are they doing chemo this time, or just rads and hormonal therapy?

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2015

    Both my friend's 86 year old mother and my mom's best friend of 75 years, that's right, 75 years, mom and her BF are both 90, are survivors of 2 recurrences. Mom has worried FOREVER about her best friend's BC! Following her friend's 90th birthday celebration 2 weeks ago, I asked my mom if it was time to stop worrying about her friend's BC diagnoses, mom replied, "Okay, I will stop worrying about her breast cancer, but I will start worrying about whether we will both make it to our next birthdays!"


    Hang in there! Gentle hugs!


    BTW....when my friend's mom got her BC the first time, she was in the clinical trial for Tamoxifen for early stagers of ER + tumors. That was a long time ago and looking back, I applaud her for participating in the study!

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2015

    kbeee...gentle hugs and thoughts and prayers to you as well!

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  • cancerround2
    cancerround2 Member Posts: 1
    edited December 2015

    I was just diagnosed with a local recurrence following an original diagnosis in 2011. In 2011 (age 33)I was stage 1, clear lymph nodes and had a lumpectomy. I received 4 rounds to taxotere/cytoxan chemo, 35 radiation and did 4 years of tamoxifen. I am now a stage 2 d/t increased tumor size, lymph nodes remain clear. Both cases very estrogen positive. There does not seem to be much literature about subsequent chemo for my scenario but my doctors seem to recommend another course of t/c chemo followed by lupron for menopause and an aromitase inhibitor. Did you complete or plan to complete repeat chemo?

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

    cancerround2, I requested oncotype second time around, even though we were leaning towards chemo. It came back really high.... 40. First time around I did TCDecond time I did AC+T

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  • mccathyg
    mccathyg Member Posts: 38
    edited December 2015

    Hi Breastfriends. Similar story to you, have had 2 local recurrences,now just been dx with recurrence to the chest wall. I am having surgery on Monday to remove the tumour and will decide on treatment when I know the pathology.. The only thing I didn't stick with on my journey was hormone therapy as I didn't tolerate it very well. If this tumour is Er+ then I will try again. I am interested to see that you are having radiation therapy for a second time. I thought we could only have it once in the same place?.

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  • breastfriends
    breastfriends Member Posts: 9
    edited December 2015

    Hi mccathyg. Your story is similar to mine. After my original diagnosis and (the first) chemotherapy, I took Tamoxifen for 4-1/2 years but stopped because of dramatic done density loss. I was pre-menopausal at the time. Now 9 years later and post menopausal I've been told I have more anti-hormonal drug options. I have been ER+ each time. I am also starting radiation for a second time. It's not common and I was always told I have had a lifetime limit. However my radiation oncologist at Mayo Clinic feels the benefits outweight the (very real) risks. I am nervous about this but there are new techniques to protect the heart like holding your breath to expand the chest. Mine is in the chest wall too now and without local treatment I was told it's possible I could have a distance recurrence in 2-3 years. I've had chemotherapy twice - CMF and TAC both, and it is too dangerous to continue with that treatment. I hope your surgery is successful. If you have radiation once again, please let me know. The very best to you

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  • breastfriends
    breastfriends Member Posts: 9
    edited December 2015

    Hi KBeee. Similar to you, my second local recurrence came back despite CMF, TAC, Tamoxifen, radiation and 2 surgeries to remove the tumors. This recent 3rd surgery was successful as far as removing the new tumor with clear margins, however it was in the chest wall and they had to remove all of my pectoralis muscle. Despite being told you can only have radiation once, I am starting it for a second time after Christmas. My Mayo Clinic radiation oncologist strongly feels the benefits outweigh the risks. I will then start anti-hormonal drugs again. ER+ all 3 times. Maybe it will work better now that I'm post-menopausal. I was 36 at the time of my original diagnosis. I wish you the very best. Let me know the treatment you decide go with, OK?

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  • breastfriends
    breastfriends Member Posts: 9
    edited December 2015

    Hi cancerround2. My local recurrence came back despite CMF with the original diagnosis, Tamoxifen, TAC with the first recurrence and radiation, and will now start radiation for a second time with this second recurrence. My oncology team feels strongly that more chemo would be dangerous at this point and could possibly cause a second cancer or other damage. I will be able to start anti-hormonal drugs again though. ER+ all 3 times. Maybe it will work better now that I'm post-menopausal. I was 36 at the time of my original diagnosis. We'll see how it goes 2-3 years from now. I wish you allthe best.

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  • breastfriends
    breastfriends Member Posts: 9
    edited December 2015

    Hi pajim. I'm happy to hear about your mother's continued good health - thank you for sharing. I'm equally sorry to read about your own situation. My best friend's sister-in-law has had 4 stage IV recurrences with mets to her bones and is still living her life. I wish you only the best. Cancer may be "it is what it is" to those of us who deal with it, but it always blows.

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  • breastfriends
    breastfriends Member Posts: 9
    edited December 2015

    Hi amygil81. Sorry to hear you had a chest wall recurrence too but SO happy to hear you are doing well!!! We have a lot in common. My surgeon called my most recent surgery a "completion mastectomy" which I believe was a nice way of saying the first surgeon wasn't agressive enough (with both the 2000 and 2006 recurrence tumors) and didn't remove all of the breast tissue. Of course the orginal surgery was 15 years ago and I was only 36 with plans for reconstruction so who knows. Water under the bridge. However it's in the chest wall now like yours. This most recent surgery (new surgeon) went well with clean margins but I start radiation for the second time after Christmas. No chemo - I'm at a lifetime limit. My surgery was also "to the bone" too but I hope that means no bad cells left for either of us. I'm hoping for a 5 year+ outcome and beyond like yours! :) I wish you nothing but the best!

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  • breastfriends
    breastfriends Member Posts: 9
    edited December 2015

    Hi voraciousreader. THANK YOU for the encouraging story. Even if their BCs were Stage 0 or Stage I, it helps to know that it's possible to survive 2 recurrences for that long. It probably isn't an original saying, but my first oncologist 15 years ago told me "I'll know I'm cured of cancer when I die of something else." The verybest to you. Thanks again.

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  • amygil81
    amygil81 Member Posts: 165
    edited December 2015

    breastfriends, did you have many nodes out, and how were they? I had 10 out, of which two were positive, so they gave me the works, I had my lifetime max of Adriamycin for bone cancer (osteosarcoma in left leg) as a teen, but they had other chemo drugs they could give me for my chest wall rx. I hadn't had rads before, but they weren't too bad. The radical surgery is tough, but we do what we have to. Sorry you had to join, but welcome to the ranks of us uniboobers. Do you think you'll start wearing a prosthesis? I wish you only the best as well.

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited December 2015

    Here is a thread for those of us who have Bilateral Breast Cancer it isn't the same but might help you.

    Bilateral Breast Cancer

    You could also do a search in the search engine for contralateral breast cancer. That might turn up some threads that will help.


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  • BethL
    BethL Member Posts: 286
    edited December 2015

    breastfriend, I am going through my first, and hopefully last recurrence. First one was 10 years ago. Your cancer sounds similar to mine, er+,pr-, her2-. My nodes were negative both times, but I still worry of course. It's what we do.

    Had lumpectomy and rads in 2005, now bmx 2 weeks ago. I had an appt with a MO for the 1st time last week. He is shutting down my ovaries (either medically or surgically) and starting me on an AI next month. I will be on injections twice yearly for bone loss prevention because of the cease of estrogen. What is new is that evidence in the last few weeks showed women on these bone loss meds were 18% less likely to have a recurrence. I'm not sure if that was an expected result, since these meds weren't developed to fight or prevent cancer originally. But, hey....I'll take it!

    You may already know all this, but just in case I wanted to share. I am premenapausal, but did Tamoxifen the first cancer, so he didnt want to try it again. Something to think about.

    I wish you the best. You've been through a lot and are clearly a fighter.

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  • breastfriends
    breastfriends Member Posts: 9
    edited December 2015

    Hi BethL,

    I love the idea that bone loss meds might help us out - every little bit helps, right? Thanks for that news. After my second course of radiation (twice in 9 years) is over in Feb, I will start the anti-estrogen meds. I had a total hysterectomy when I was 37 after my first diagnosis. Mainly due to multiple ovarian cysts and partly to reduce the uterine cancer risk from Tamoxifen. I know it wasn't a big risk, but hey, I was only 37. Now that I'm post menopausal I'm hoping for good results from meds. I'll need a bone loss med too. Early menopause after chemo isn't great, but I was premenopausal when I took Tamoxifen and they think it might have helped keep me in remission for the 5 years I took it. My first recurrence was several months after I went off. May or may not be related but interesting. The tough part for all of us is never knowing I think.

    Continued good health to you and no more recurrences! :)

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