How about a 4th time?

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taterbyg
taterbyg Member Posts: 2
edited July 2018 in Second or Third Breast Cancer

So I have been a stalker of this community for the past 10 years. Having been diagnosed with my first cancer at 29, the second at 33 and the third at 37, I have regularly used this site to answer questions and to find stories I could relate to as a means of support. All of my BC's were triple negative and you can see my diagnoses in the signature below. After the first BC, I had a lumpectomy, Chemo and RADs. After the second I had a bilateral MX. After the third, which was considered by my doctor a local-regional recurrence of the chest wall (it was in the skin above the implant), I had a lumpectomy and chemo again.

My fear is that I have tempted fate one too many times. And that if/when this comes back, it will be a distant metastasis.

So, I am looking for someone to relate to...someone who has been diagnosed a fourth time and the cancer has still not metastasized. Is there anyone out there? I need some reassurance.

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited March 2017

    Hi there, I too have recently been diagnosed for the 3rd time, 38, 43 and 51. I had a latissimus dorsi procedure in 2014 and felt that may have been the catalyst for my '3rd round'. I had chemotherapy for the first time in 2016, no radiotherapy and insisted (politely) that my surgeon remove the implant, which he did. I found out yesterday that from my last biopsy I still have active cancer cells (grade 3 ductal carcinoma) in 3 separate areas, 2 of which are classed as orientated Lumpectomy from my initial diagnoses in 2002! I need more advice on this as to be honest I don't really understand it fully (I am a Nurse!). I am assured there are no mets, feeling quite anxious re same as I am a single Mum (Scottish origin with no family other than my own 3 children aged 16, 20 and 22). Lat Dorsi muscle has ongoing problems ie., stinging, numb, moderate pain and really just feels like a hindrance! I try and life by 'one day at a time' and live life to the fullest....not always easy with the cancer cloud never far away!




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  • wallan
    wallan Member Posts: 1,275
    edited February 2017

    Hi there:

    Hugs to both of you! What an ordeal...

    You are both in my thoughts and prayers.

    wallan

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  • 7of9
    7of9 Member Posts: 833
    edited February 2017

    taterbyg - I'm not far behind you. IDC 2 spots 2 cm & 1 cm possible lymph mets then neo adjunct chemo and double mastectomy in 12. No rads (big mistake). Tamoxifin failure after 3 1/2 yrs - 10/14 axillary nodes (4 nodes outside the axillary sac were negative). Surgery, Rads 1st, then Chemo - switch to arimidex after ovaries/full hysterectomy as it was stil ER + though slightly less so. Clear ultra sound, mostly clear CAT - one small spot on liver too small to identify - should be nothing - that still earned a "no sign of mets" sign off by two doctors. Zometa 2 x a year. I will probably be on anxiety and sleep aids rest of my life - that is while I'm not on vacation. We are up to 3 - 5 per year from long weekends to hikiing in the mountains and doing Disney. Fortunately my husband is doing ok and I banked a bundle in my 401 k - I'm having fun blowing 1/2 of it since my odds I figure are low that I'll be here in 20 yrs to enjoy it. Next up: new bedroom furniture and a shed. No, not a shed for a pony or anything cute or good, if you saw our garage mess, you'd be excited for a shed too! We did our kitchen last year. Did you see the actor Bill Paxton only 61 died today? No one is promised tomorrow...I am trying to buy a small company with my mother and if I make it to 50 I'm buying a mustang convertable and she'll be 75 - we're going to Ireland. 4 1/2 years to go!

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2017

    I have had one recurrence, but a good friend locally, who is not on this site, has had 4 recurrences. These have all been in lymph nodes in her axilla and neck. She has no distant metastases, but it keeps coming back regionally. She is treated as Stage IV in that they plan to keep her on some sort of medication for life, but it is not considered life threatening since it has not spread to organs.

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited March 2017

    Re my last post - deleted as prying eyes (my daughter) close by! My 3rd re-occurence is also on the chest wall and thankfully no mets! I think we have had our share! I have nursed patients in hospital who have had 3/4 cancer scares, none of them under 60! Hope this reassures a little as I can empathize 100% with you!

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited March 2017

    Great attitude, sure you will do it all and more!

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  • mccathyg
    mccathyg Member Posts: 38
    edited March 2017

    Hi Taterbyg

    Yes I have had BC four times now. Original dx in 2000 with recurrences roughly every five years thereafter. My last recurrence was staged at 3b with grade 3 tumour in chest wall. Did chemo for second time and now on Letrozole.

    My onc says I am unlucky 😀I am 57 so first dx at 40. I have now retired on ill health pensions but I have a very good quality of life and still work a few hours per week. Luckily Letrozole has been kind to me.

    I have three monthly checkups with a variety of scans during the year. I know that I am likely to be stage Iv if I have another recurrence but am greatly encouraged by stories from survivors.

    I treat it like a chronic disease now, it will flare up again and I will have some more treatment until it is stable again.

    Good luck to you and I am glad to meet some other users with multiple recurrences.

    Xx

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  • ohnonotagain20092016
    ohnonotagain20092016 Member Posts: 5
    edited April 2017

    I'm so sorry to hear of your recurrences. Can I ask, how did you or your Dr. find it in the skin above the implant? What did it look like or feel like? I'm going through reconstruction right now, have the expanders in and almost to the last stage Thanks! Sandra

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  • pabbie
    pabbie Member Posts: 370
    edited May 2017

    4 cancers total: I'm on my 3rd cancer dx., 2 of which were recurrences in the same breast.

    BUT I had stage 3 colorectal cancer at age 41 where I had surgery, IV-pushed chemotherapy, and radiation. It put me into early menopause.

    My cat scan showed a 1.1 cm under my right arm where the scar from the right breast mastectomy ends. My ultrasound shows no lymph nodes and the tumor is not attached to the muscle.

    I meet with my onc today. I already e-mailed her to not push chemo. The chemo I had when I was 41 almost killed me.

    I have a bone scan tomorrow which is hard for me because I'm claustrophobic. I know it's not a tube, but the scan on top of you almost hits your nose.

    And I hate to be weighed. I'm not what you would consider a good patient.

    What motivates you to continue treatments? I don't have any children., but my furry ones count. And my husband.

    I've been in therapy since my first dx., with medication and talk therapy for depression and anxiety.


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  • sheropesem
    sheropesem Member Posts: 34
    edited July 2017

    Hi sweetie.

    I am 43. I was diagnosed for the first time when I was 38. Triple neg, large tumor, right breast, lymph involvement. Double mast. Came right back a year later, my whole sub-clavian lymph line. Had that removed my an excellent cardio thoracic doc who is now my best friend. Came right back in 2 lymph nodes under my arm...went 9 months and it came back again in my armpit again...only one lymph node infected. So 4 time survivor and having horrible pain in my right arm the last couple of weeks. I have scans next Thurs. I am taking Xeloda but have almost been continuous in some sort of chemo for 5 years. I work full time. Scared about my arm hurting so much? But will just have to wait and see. Still raising teenagers and my husband has young onset Parkinson's disease. It's really bad, but I need to stick around and take care of these kids and the love of my life.

    God is good.....all the time.

    Robyn

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2017

    praying they find a benign reason for the pain

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  • hopeful_36
    hopeful_36 Member Posts: 24
    edited October 2017

    To all the ladies here with multiple recurrence episodes:

    1) I am very sorry to hear about your experiences. I am on my second.

    2) And a question: have you drastically changed your diet and lifestyle after your first diagnosis? Or your life has always been the same? What I am particularly interested in here are the emotional and spiritual aspects of your life in between diagnosis, and diet.

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  • 7of9
    7of9 Member Posts: 833
    edited February 2018

    I know this isn't in most recent reply but I found this string buried and wanted to comment on it. I have to say that my most drastic change is… More vacations! I did switch from artificial sweetener to truvia which I guess is still form of cheating at the sugar taste but without the calories.I avoid milk when possible and milk products because the ER positive thing.. I figure a lactating cow is not necessarily my best friend but Darnit if a little bit of milk and cereal and some frozen yogurt doesn't creep in when I'm not looking.

    More organic meat and vegetables as much I can.

    More walking and bike riding, lower stress (with the help of Attivan). The troubles of others makes me feel so thankful for what I do have. For right now that time. I don't know how much I don't know how good the quality will be six months from right now but I have this next six months and I feel great ...amen! of course there's aches and pains but I just gotta get my butt moving crummy Ohio weather doesn't help



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  • GraceDD
    GraceDD Member Posts: 38
    edited April 2018

    Hi All, I am 26-years past my 1st DCIS occurrence in 1992 at age 35. Then 2006 (after 14 years). Now 3rd time (2016) Stage IV (1-1/2 yr ago). After 1-year juicing/enemas & supplement protocols, plus Letrozole and Zometa (9-months)...

    ...my markers are in normal range; CT just showed Lymph mets clear; Chest wall mets clear; Lung mets was "starry planetarium" now down to just 3 nodules at half size...

    So yeah, I'm celebrating Life, hopefully for another 10 years? Although Letrozole is "palliative (comfort care)", it's working for me and so many others, with minor SE (headache if I drink caffein to combat fatigue). I've got my ducks in a row for the future... So nothing else to do but honor how I feel, and make each day as fulfilling as possible. I limit thoughts of MBC to 15%; and 85% to Living! I've sworn off volunteer work (I did it for years). I focus on Relationships (We are taking dream trip next week.) I do only as much exercise or Responsibilities in a day as I can lovingly handle - Be kind to myself! I socialize (DH is introvert).

    So, remaining "upright and smiling" is my only "job". "Happy, joyous and free" is my motto. I heard that pain in the body only becomes suffering, when we let it get to our mind. This helps me keep perspective! I nap. I eat organic and drink fresh vegetables juices. DH is coping with all this in his own way, I can't control that.

    26 years! Just met Soulmate DH 4-years ago. You never know what good is around the corner. Thanks so much for letting me share, I needed a good chat with friends who understand!

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited April 2018

    Hi Grace,

    Love yr attitude and positivity! You are so right in what you say as none of us are promised tomorrow; even for those with no 'C' in their lives!

    I too believe in living for today, try not to sweat the small stuff, too much, although it's not always easy!

    My Mum used to say that none of us go before our time!

    Good luck to you and to many more years on this forever changing , or should I say challenging!, planet! xxxxxx

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  • sparklypink
    sparklypink Member Posts: 26
    edited July 2018

    Hello Pabbie: I stumbled on your story...seems you had a bone scan last year. What were the results? I'm having one next week and am trying to learn from others' experiences. Thanks!

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