So worried about recurrence

Torridon
Torridon Member Posts: 89
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi. I was dignaosed in Jan 2012 aged 37. I have a three yr old. I have had 4/6 chemos. I am already stressing about recurrance. I am told as I only have one node involved then that is not that bad, but I've read so many other posts on this and other websites where even with one ( or no nodes) 2 or 3 years down the line mets are discovered. I am so fearful and it is all I think about. My life has been on hold since i got this devastating news in January. WOuld like to hear from others in a similar boat/ diagnosis who could maybe offer a bit of perspective. Really struggling.  Thanks 

DX Jan 2012 MX Feb 2012: ILC multifocal 3.1cm, 1.9cm and 1.4cm, SNB 1/3. Node clearance Mar 2012 ( all other nodes clear) ER +ve 7/8.  Her -ve.  

Chemo 6 x FEC ( had 4/6 so far)  

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  • Torridon
    Torridon Member Posts: 89
    edited June 2012

    should also say my ILC is classic  and grade 2 

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  • Racy
    Racy Member Posts: 2,651
    edited June 2012

    Hi, I understand your fear. None of us know the future. All we can do is the best we can to prevent recurrence.



    I assume you will have hormonal therapy after chemo. Talk to your onc about measures to prevent recurrence. You can read here about diet, exercise etc.



    I strongly recommend that you talk to your onc or GP about anti-anxiety medication which would help you cope emotionally. You would be amazed at the difference it can make to your state of mind. Psychological counselling may help too. Your doctors or cancer centre should be able to recommend a therapist.



    Stay in touch here for support.

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  • Torridon
    Torridon Member Posts: 89
    edited June 2012

    thanks. I am taking paroxitine to help with anxiety and if has. I know we all feel the same and that is why we post on here, but just feel so overwhelmed by it all today x 

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  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    Torridon, it is tough and I think we have all been there. Take a deep breath and give yourself a break.



    After worrying myself silly, I finally decided that it didn't make much sense to worry. I have done all the treatment. I amtaking my femara. I am eating a healthy diet and getting my exercise. There is nothing else I can really do and however much time I have left, whether two years or forty, should not be spent worrying. I make a real effort to do nice things for myself, to enjoy, to get out and so on.

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2012

    My Gynocologist in Wisconsin was 31 when she was dx with 2 small children.

    She is now retired and traveling the world doing volunteer work.

    As many said, simply the word cancer freaks us out, but worrying won't alter the outcome.

    Enjoy every day you can.  None of us (even those never having cancer) knows when our last day will be and 

    from what, so relish the time you have, and may it be a VERY LONG time, indeed!

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  • pupmom
    pupmom Member Posts: 5,068
    edited June 2012

    I went through a tremendous amount of fear after my dx and then when 2 nodes were found with micromets. Since then I've gone on an antidepressant which has really helped. I'm back to my knitting, getting lots of exercise and enjoying my dear grandsons again. I have had 3 clear scans and don't need another until next March. It's a difficult process, but you'll get to a point where cancer is not in your head ALL the time! The people on this board helped me a lot. God bless!

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2012

    yorkiemom no scans till next March? My Dr's want me scanned 2 times a year till the 5 year mark. As far as thinking about cancer all the time, I so agree it was on my mind most of the time the first year or so, but now I go days without it being on my mind. When I start to think about it more is just before my next scan, which unfortunately is in 2 weeks. How I dread that.

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  • GraciousGal
    GraciousGal Member Posts: 83
    edited June 2012

    Wallycat,

    I can't resist: I'm sure you meant to say that your gynecologist was 31 with 2 small children when she was diagnosed.  

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  • pupmom
    pupmom Member Posts: 5,068
    edited June 2012

    Well, let me qualify. I am getting diagnostic mammos on my cancer side every 6 months. I will get a regular mammo on the "good" side once a year. But the CT will only be once a year, barring something unexpected.

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2012

    Yes, that is what I meant ;)

    sorry...trying to type fast, early in the morning (for me).

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  • Torridon
    Torridon Member Posts: 89
    edited June 2012

    Thanks all. I am watching my 3yrs old boy play in the street with all the kids right now, just overcome with sadness and fear. He is so carefree and beautiful and I just can't cope with the thought of not being here for him. I feel as if I am in the clutches of one big monster who won't let me go. It's got my thoughts, my body and snactched my hopes and dreams and shattered my world to pieces. Even 6 months after diagnosis I still can't believe this is happening. 

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  • Fearlessfoot
    Fearlessfoot Member Posts: 165
    edited June 2012

    Hello, my breast oncologist and a second opinion oncologist here in Switzerland told me that the fact I have hard-to-see, multifocal lobular invasive (early stage 1 nonetheless) made me ineligible for reconstruction using autologous perforators own body tissue type.  The concern is difficulty in surveillance detection if recurrence happens and that ILC can sneak into the fat tissues.

    So I had the NSBMX with immediate reconstruction, one-step Mentor silicon implants, total sub-muscular placement and all is going fine.  Minor problem:  the reconstructed nipple on the cancer side necrosed and must be replaced later.  Now I wonder if I could have some fat grafting from my body tissues to help in some adjustments, so I am still looking for info about ILC and using autologous body tissues in the breast.  

    I can't find any supporting info online anywhere.  Does anyone have any reliable information on this?

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  • beth1965
    beth1965 Member Posts: 455
    edited June 2012

    Torridon- i also was diagnosed in January also.  From being here on these discussion boards it seems that the more time that goes by the better the outlook we will have.  Right now it is still fairly new to us and it is hard to think of anything else especially if your going through treament. I definately think  that a healthy lifestyle would help.

    I try to keep myself busy with whatever i can so i do not have as much time to think about it.

    But i do think we all need days like you are having today as well. We need to have some time to be sad,angry or overwhelmed we have earned thet right by dealing with this horrible disease.

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  • Torridon
    Torridon Member Posts: 89
    edited July 2012

    thanks beth. I feel a bit better today. went out for a coffee with my friend to the garden centre and bought some strawberry plants. really up and down, but coming on these boards really helps. all the best to you x 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited July 2012

    Torridon,

    You're doing the right thing by coming to these boards and posting.  Putting your feelings into written words is a step towards letting things go. 

    I'm not going to tell you not to worry.  We each have different paths and different ways of handling things.  I went a full year before I could honestly feel that I had a future.  But then again, the last of my treatment plan was 14 months after my dx.  It takes time and it depends on what we have to deal with as we go through treatment.  I had a lot of scans and false positive results -- enough of them that I finally got to the point of not worrying that I had mets unless the proof was indisputable.  Just because I wouldn't worry about hearing results didn't mean that I felt like I had a future -- it took time for me to realize that I wasn't going to die in the next year or two.

    You will get there.  I can finally say that I'm doing things with the idea that I have many years in front of me.  I don't grasp each day as if it might be my last "good" day like I used to.  I still worry, but it's the same worry that I give to a heart attack, car accident or something else happening.  I can't be guaranteed that I'll live another 20 or 30 years, but I can sure live like it.

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  • jenlee
    jenlee Member Posts: 504
    edited July 2012

    I worry, sometimes the sky is falling, some days I barely think about it. Finishing chemo wasamilestone and relieved some worry. Not thinking about cancer for even day is an accomplishment. I think that surgery was good distraction for me.



    Wishing you and all of the of some peace!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    What great advice: don't worry until the proof is indisputable.  This helps, since because of my dense breasts and my ILC dx, my onc. has ordered a mammogram and an US of both breasts tomorrow and a baseline pelvic US b/c I'm on tamoxifen. She said I was overdue for a mammogram (last one 12/10) and I guess she's right, although I had five yearly ones before dx and those sure didn't find my 2 c. ILC. I asked for the US b/c of my breast density and she agreed right away. So multiple follow-up scans.  I only got a mammo and US of my right breast for diagnostic purposes.

    And I just finished rads a month ago,and I'm really nervous about tomorrow.   Thanks, Anacortes girl.

    Claire in AZ

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited July 2012

    Hi

    I just wanted to respond--it really will recede in your mind.  I am not saying that it disappears, but really, months go by and I completely forget that  I ever had bc.  I had a lumpectomy, chemo and radiation-- I am almost 4 years out.... working, bringing up kids,enjoying my career, friends, family- getting back into running (I ran marathons many years ago).  I focus on being healthy.  I think it is a little too early for you to not naturally worry... but I promise, the day will come when you wake up and you really won't think about bc.  I was at least 1-1.5 years out from treatment, with a full head of hair before that happened.

    There will always be something to worry about--- I figure I am more likely to be hit by a bus before bc comes back. But, if it does, I will know what to do....and that gives me comfort, when I actually think about it, which is not that often. I have an annual mammogram, annual MRI, visit to my pcp and my gyn.  So, 4 times a year, someone is paying attention.  On the two days a year I see my onc, I take the day off and do something fun... but other than those 4 days, I don't give bc much of my energy.

    You will get there--and if you don't, after a year or so, you might consider talking to your doctor to help you out.... 

     

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited July 2012

    When I found out how many I had positive I was shocked! When I heard about a few of my "statistics" was was in pain.

    My choice to avoid statistics has been the best thing for me....no Google....no info from know-it-all friends and all my docs respect my request....

    I do know that my body did exactly what its suppose to....catch all that junk in the nodes....and I'm Very thankful for those little buggers! I looked into the lymphatic system and its pretty amazing. So, instead of researching the "possible and scary" I go for the "scientifically/medically proven and amazing instead....

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