Recurrence 2.5 Years after Bilateral- Need Help Please!

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hd1017
hd1017 Member Posts: 24
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hi BC community!

I'm fairly new here. After my first diagnosis I sometimes checked these boards to find answers to my questions, and found everyone's posts really helpful. Now two and a half years later I am in need of your help once again. 

In 2008 I was diagnosed with extensive DCIS in both breasts, and IDC in the left breast at the age of 40. I had a bilateral mastectomy with expanders placed, and implant surgery 4 months later. I have been on Tamoxifen for 2 years. 

Two months ago I found a lump in my right breast. It was removed last week. Path came back- IDC! No nodes were removed, and my BS didn't get clear margins. The report was incomplete so they don't know if I'm Her2+ this time around. 

I can't believe this is happening again. My calendar is quickly filling up with medical appointments. I have a breast MRI on Tuesday to see if there's anything else going on. My sentinel node biopsy and surgery to get clear margins is scheduled for the 24th.

I won't know the results of the testing until the 30th, which is supposed to be my first day back at work. I am a teacher, and I don't know how to plan for this. I can only speculate until the results come in. My husband will be traveling four days a week for work. I will be left to care for our six year old son and our lab, while working full time and going through whatever treatment is recommended. Yikes!

I know I can do this. I really do. But it would help to have a guide, someone who's been where I am. Any takers?  

Cyber Hugs,

Helen 

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  • Kodapants
    Kodapants Member Posts: 139
    edited August 2010

    I'm confused,  you had a double mastectomy yet you found a lump in your breast? How is that possible? Please don't take this wrong.

    Thanks

    Koda

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  • hd1017
    hd1017 Member Posts: 24
    edited August 2010

    No worries Koda. I was confused too. Still am. My implants push everything forward, and I found a small lump during a self-exam. My BS and I thought it would be fat necrosis. A recurrence is rare after a mastectomy, but obviously does happen. That's why I'm here. No one in my circle of BC buddies can relate. I'm searching for someone who has had this happen, and figured these boards would be my best chance of finding them. 

    Thanks,

    Helen 

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  • rcca
    rcca Member Posts: 59
    edited August 2010

    This happened to my Mom. She had a recurrence after her bilateral. They removed the lump and she had radiation. She lived another 25 years and did not die from BC.

    RC

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2010

    Approx. 1% - 2% of women have a recurrence or new occurrence of breast cancer after a bilateral mastectomy.  That's a low percentage, but when you think about the thousands of women who have mastectomies every year and the fact that 1 or 2 out of every 100 will get BC again, you realize that it's not that uncommon.  There have been quite a few women on this board who've had BC again after a bilateral.

    The reason that a recurrence or new BC is possible is because even with a mastectomy, there will always be a few scrapings of breast tissue left behind, no matter how good a job the surgeon does.  So with any breast tissue, there is the chance of breast cancer.

    Helen, it's interesting that you found the lump during a self exam.  My surgeon told me that with sub-muscular implants, because the implants push the muscle forward, it would be easy to find a recurrence or new cancer, should it develop.  Your situation seems to confirm that.

    Good luck with your surgery and tests.  Hopefully this is a small isolated tumor that can be easily treated.  And I'm sure that soon other women will respond who've been in your situation and can offer advice.

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  • my2boys
    my2boys Member Posts: 339
    edited August 2010

    Hi Helen,

    I'm so sorry you are going through this again.  I had a bi-lateral mast. in Sept. '08. and I had expanders and then implants after chemo was completed.  I did TCH chemotherapy and my year of Herceptin was up in Oct '09 and I found a small lump in the skin at my original cancer site in Nov '09.  After several visits to my plastic surgeon who said it was nothing, I finally went to my breast surgeon a few months later.  He immediately had it removed and confirmed that it was a recurrence of the original cancer, only this time it was not only Her2+, it was also ER+.

    I was shocked and scared, but quickly geared up for another fight.  A PET scan confirmed that the recurrence was local and my oncolgist quickly started me on another round of chemotherapy AC/TH, but this time I will also have radiation to the affected breast.  I am back on herceptin and also Tykerb.  I will be taking Arimidex at some point in the future. 

    I know it is rare, but as others have said here, it is also good that you had the reconstruction, because the recurrence appears to be easier to detect.  I know mine was right there in the fatty tissue.  I could feel and see it very easily because the implants, unlike a real breast, are very smooth and not lumpy at all.

    I know that the childcare issues can be overwhelming at times.  I have two young boys of my own and my only advice is to start dialing up as many people as you can to circle the wagons and be there for you.  I called friends and neighbors as soon as I was re-diagnosed and with their permission I put all of their names and numbers in my phone, so in case I am held up at treatment or I need a ride for my sons while I am in treatment, I can call through the list and see who can lend a hand.  I have been in treatment for 5 months now and I am starting radiation (daily) in the fall.  You WILL get through this......just compartmentalize as many things as you can and deal with it in bits and pieces.  As I am sure you know, life goes on.  We have gone through with all of our vacation plans and as much of our daily activities as we can manage.  I am thankful for the help I have received, but I am more thankful for my kids because they don't give me too much time feel sorry.......just time to keep moving on.....smile. 

    I wish you success in your treatment. 

    Hugs,

    Anne

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  • hd1017
    hd1017 Member Posts: 24
    edited August 2010

    RC and Beesie,

    Thanks for replying. I have been glued to this site. Was over reading the "You know you have breast cancer when..." thread. Made me smile. I also contacted the reach to recovery program and asked to be matched to a volunteer survivor with a similar story. I hope to hear back in a few days. I'm so grateful to have a place to come while I do all this waiting.

    Helen 

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  • my2boys
    my2boys Member Posts: 339
    edited August 2010

    oops looks like our posts hit at the same time....

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  • hd1017
    hd1017 Member Posts: 24
    edited August 2010

    Hi, Anne,

    I know what you mean. The initial shock is the worst, but now that it's faded I'm ready to move forward. I'm already transitioning from feeling sad that I found this lump, to glad it's being taken care of. So that's good. I'm hoping to have a better idea of how this might play out when I see my oncologist on Monday. I plan on enjoying the last couple of weeks of summer with my son.

    You sound as if you continue to find the energy to do it all. Were you able to work through chemo? I know everyone tolerates it differently, so this is probably a pointless question, but I'm concerned about teaching through the treatments, and still having enough energy for my son. He's my number one priority in all of this, and I want to keep things as normal as possible for him.

    I know I need to reach out more, especially since my husband will be gone a lot of the time. I already started calling neighbors and friends for back up support, which was difficult for me because I'm so used to doing it all on my own, but it's a relief to know he'll be covered if I'm running late or stuck somewhere. 

    Anne, good luck with the rest of your treatment, and thanks for reaching out to me. I'll be thinking of you.

    Helen 

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  • Houndmommy
    Houndmommy Member Posts: 377
    edited August 2010

    Helen,

    I'm sorry you are having to deal with a recurrance.  It is a big fear of mine (which is why I look at these threads) since I didn't have clear margins in 2 places after my mastectomy and my radiation started kind of late.  Anyway, I'm glad I looked at your thread because I learned something - I assumed reconstruction would make recurrances harder to detect but apparently that isn't necessarily the case.  Originally I had planned to reconstruct but having to have rads threw me and then I thought it would make finding a recurrance more difficult so I had pretty much decided to not do it (knowing I could change my mind if the fear went away).  So now, I guess I may look into it again.   I'm sorry you are dealing with this.  Good luck getting everything figured out.

    Hugs, Kim

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  • MRDRN
    MRDRN Member Posts: 537
    edited August 2010

    Hi There,

    I am so sorry to hear this and know a person on the boards who had a recurance after only a couple of months of Bi Mx.  I will send her a PM now.  I am glad you are moving on a bit and enjoying the summer despite the news.   Kids help with that, don't they?  :))    I remember asking the question of my BS what his recurrance rate was able Bi Mx and he has had a patient with a lump in the very upper outer quad....I had met a lady in a plastic surgery class who had one recur in the scar and had to get both her implants removed.  It does happen :(  Best of luck and keep us posted.  This is a learning experience for all. 

    MRDRN

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  • hd1017
    hd1017 Member Posts: 24
    edited August 2010

    Houndmommy- Glad to be of help to someone! ;) Thanks for your kind words. Hugs back...

    MRDRN- I appreciate your help. I figure every woman on here has different experiences with cancer, no matter how similar their cases might seem, so it's good to hear as many different stories as possible, and how they came to their treatment decisions. I didn't have much option the first go around, the DCIS was so extensive. I want to learn as much as possible this time so I feel comfortable with the path I choose. 

    I'll post after my appointment tomorrow.

    Helen 

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  • kellyj
    kellyj Member Posts: 75
    edited August 2010

    Hi Helen,

    It happened to me last October after two and a half years of tamoxifen. I was shocked right along with my onc and surgeon.  I went through 8 rounds of chemo and 5 weeks of radiation.  Also, it was decided that I should have my ovaries out.  I made it through the rough chemo days with some help from friends and family.  The moms from my kids school brought meals nightly the week right after chemo, my dad picked up my kids from school.  So sorry you also have to face this, let me know if I can be of any help.

    Kelly 

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  • kittycat
    kittycat Member Posts: 2,144
    edited August 2010

    Helen,

    I am the person MRDRN is referring to.  I was diagnosed last year with a small DCIS tumor.  They only found it after doing extensive tests on me because my sister was dx at 44 (8 months prior to my dx).  I had a bilateral mastectomy with widely clear margins.  I was hormone negative, so no Tamoxifen for me.  I am BRCA1+, so I made the decision to have a full hysterectomy & my ovaries out. Well, a few weeks prior to my hyst, I found a few small lumps on my right breast, very close to where I had BC the first time.  I was dx again with BC, this time IDC and multifocal DCIS.  It was in my lymphatic glands, but had not spread to the nodes.  I had positive margins after my BS removed my lumps, so they went in a week later and he removed more tissue and nodes (which came back clear).  I was triple negative, so my BC was growing fast.  I got opinions from 3 different oncologists.  I am in the middle of getting chemo right now - dose dense AC/T and will have radiation after that.  I never had my hysterectomy because of the BC dx, but will have it after radiation. 

    You can PM me anytime.  Good luck and stay strong.  Don't be afraid to ask for help!!!!  (((hugs))) 

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  • Marybetz
    Marybetz Member Posts: 202
    edited August 2010

    Hi Helen!  I know too what a difficult time this is for you as I too am a teacher and know all too well the demands of the job.  I have Stage IV BC.  We're so used to doing things for others and not having others do for us.  There is a new series coming out on Showtime called "The Big C" which is about a teacher recently diagnosed with cancer.  It airs tonight but if you have Showtime you can of course access it anytime. It is in NO way depressing, I couldn't stop laughing!!!  I highly recommend you watch it!!!  It will brighten your day I promise. 

    Much love and prayers for all of us!

    Mary Beth

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  • hd1017
    hd1017 Member Posts: 24
    edited August 2010

    Kittycat- Thanks for getting back to me! :)

    Kelly, You've helped already. You are on the other side of your treatment, and that confirms that this too shall pass. It'll suck for a while, but I really don't think it'll be worse than post bimx. At least I hope it's not worse. Except for the hair thing. :(

    Mary Beth, I do not get showtime since I am on a budget. Trying to save for surgery and treatments! We have to pay 10% of costs until we it $4,000. I'll look into it though. I could use some laughs! Thanks.

    So, my onc said this is not a recurrence. It's a new primary. DCIS in right breast first time. Now it's IDC in right breast. Haven't gotten my breast MRI results yet. I did find out I'm triple positive, so these little guys are aggressive. I'm guessing my docs will be aggressive right back, so let the fun begin.

    Best of everything to all of you. You are a terrific support team.

    Helen 

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  • nikola
    nikola Member Posts: 466
    edited August 2010

    Hi Helen,

    so sorry You have to go through this again. I had bilateral mastectomy in May of this year and was debating with myself re:chemo or not. My onc. suggested chemo as I was 42, had three cancers in one breast (that was surprise learned after mastectomy) and oncotype was not done as results for Her2 were taking too long. Anyway, I decided to go with chemo (would have my second round of T/C next week). I just got call from radiologist for an appointm. to talk about possible radiation. Now that is surprising again, but apparently radiation after mactectomy is cutting possibility of local reoccurance by 10-40% (depending  of node involvement and cancer size).

    Did You have chemo/radiation first time around or You went straight to hormonal therapy?

    Good luck to You and take care

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  • hd1017
    hd1017 Member Posts: 24
    edited August 2010

    nikola, 

    I know what you mean. The bilateral was enough to go through. It took me ages to feel sort of normal again. I was not encouraged to do chemo or rads first go around. I have faithfully taken tamoxifen since 2008. I was 40. I am 42 now and facing chemo, herceptin, and rads anyway. Who knew? I'll do whatever is necessary, but I don't have to like it. 

    Sorry you have so much stress piled on top of you. In some ways I think if I had done chemo and rads right after bimx it would have been easier. It's really disturbing to be dx again so soon.  

    Hope each day finds you closer to the end of this ordeal.  

    Be well,

    Helen 

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