I feel numb, can't believe am going through this again...

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JadeGirl
JadeGirl Member Posts: 35
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hi ladies,

I don't want to scare those going through this the first time, so please STOP reading if you are a senstitive soul as the following is a bit of a rant about being diagnosised with a recurrence.

SO...I am facing this again...who would have frickin thought AFTER just going through this last year (stage 1a, no node involvement, no family history/gene negative, masectomy with back flap reconstruction and chemo - hormone negative but HER2+), AFTER being told I only had a 2 - 3% chance of getting it back, AFTER starting a great new job, AFTER putting aside hopes of starting a family and getting excited about the prospect of being able to try again, AFTER getting my hair back, and AFTER getting a 'clear' tumor marker test back 2 months ago...

I feel pretty raw at the moment, life has dumped a lot on me (and my husband) recently...from finding my underarm lump is cancerous, that there is a possible implant leak to contend with, and that there are 'suspious shadows' in my other breast...at least we have started the diagnosis although I am petrified of what next week will bring, knowing that IT is more aggressive this time and establishing the extent of the spread plus treatment...

Ok, so may sound weird but I had a pretty 'positive' experience with this last time (e.g. short recovery time after surgery, mild chemo side effects etc) but for some reason I can help but feel pestimistic about the future - and I am typically a "glass is half full + look for a silver lining" type of gal!...hopefully I'll feel more like myself after learning what we are dealing with and the proposed plan of attack...things should be clearer by next Friday...  

The lump and arm tingling/numbness was the only clue something was wrong, but it started around the time I had my reconstruction tattoo so my team initially thought the lump was a infection pressing on my nerves.  Every time I feel a 'pinch' or 'tingle - my mind turns to a dark place as to where it may have spread to...

My doctors have done a core biopsy on my left side (the lump), taken bloods, done an ultrasound and breast MRI - but next week I have another core biopsy on my right breast + PET scan + 'plan of attack' meeting with my team and looking to line up a second opinion.

My husband and I have yet to tell our friends and family for various reasons (we will at some point but not ready now) - it's still so unreal and we have much to deal with already on top of what's going on with my health, and just super worried about how each is doing (at least I have been blessed in love!). 

For now, I have contacted my previous support group and am just grateful for the opportunity to vent on this site - it feels better knowing that I am in your great company!

That's it for now, I feel better having 'spilt my guts' out...thanks for reading.

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  • Racy
    Racy Member Posts: 2,651
    edited September 2011

    JadeGirl, I empathise with you. You have been through a lot with your first diagnosis and had every reason to be hopeful that cancer was in the past. It must be overwhelming for you at the moment facing further treatment. I pray that your new cancer is early stage and a treatment plan can be put in place to deal with it promptly.



    You can always rely on this site for advice and support. Wishing you strength as you deal with this.

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  • REKoz
    REKoz Member Posts: 590
    edited September 2011

    I can only offer you every last ounce of sympathy and support for what you are going through. You are living the nightmare of everyone already having done this once. In particular I think us stage one gals who, given that low percentage of recurrance, have an easier time believing we are done. I'm not saying complacent. At least for me, I know there is always that chance. But such great odds does make the idea of moving on a little more palpable.

    Just yesterday, I was preparing for a wedding and struggling with my hair not doing what I wanted it to do. Then it occured to me that this struggle was in fact something I looked forward to after chemo. I shuddered at the thought of losing it again and wondered if I could psychologically go through that. I just can't imagine the depth of your despair and I only wish there was something I could do or say that would help. What I can do is offer you virtual hugs and many prayers that you get through this in the same way you did last time. X0

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  • catbill
    catbill Member Posts: 326
    edited September 2011

    JadeGirl-

    I am so sorry that you are faced with this nightmare a second time.  You are living the fear that we all have in the back of our minds.  I can only send prayers of support, and wishes for peace and strength as you tread this path again.  Hang tough, and call on us when you need us.  You are already in my prayers.

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited September 2011

    Dear all,

    Thanks so much for your kind words - it does mean a lot and makes me feel more hope for the future.  I know I am probably in some of the 'darkest hours' of my new journey so just wanting it to be next Friday already!

    I never for one second thought it would never come back and have been using my 'second chance at life' to do more of what really mattered so if it did come back I would not have regrets...but I guess we were caught off guard by how quickly it returned...I thought I would at least have the chance to have kids (in my mid-30's), re-establish my career and have the chance to enjoy life for a bit with my husband...

    Anyway that's it for now, thanks so much again...

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  • sandilee
    sandilee Member Posts: 1,843
    edited September 2011

    I totally understand your shock and fear.  I discovered my mets after an MRI to the spine when I thought I also had a pinched nerve.  I was nearly four years out with what I mistakenly thought was NED, no evidence of disease.

      You will get your feet on the ground once your treatment begins.  If your spread is just your lymph nodes and other breast, it's very possible that chemo and surgery, along with hormonal treatment will get it handled sufficiently that you can have many years in remission. {{{Hugs}}} and best wishes. 

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  • She
    She Member Posts: 503
    edited September 2011

    Jade, in many ways the second time is easier.  You already know how the system works.  You're a lot more educated about BC so you can use your knowledge and experience to your advantage.  It is so much easier to be your own advocate when you know the drill.

    I've had three different BC's so I do know how you feel.  Just keep taking things one day at a time, or an hour at a time if you need to.  When you have all your results and know the plan forward you'll be able to focus on what you need to do.  I know ... this whole thing just sux ... period.

    Hugs, Strength & Courage

    She 

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited September 2011

    I'm so sorry.  :(    I was like you - even though I went through a year of treatment I handled it all very well and always believed I'd be one of the 80% who never faced cancer again.  I found the entire thing so curious and interesting, like a sociologial experiment in "having cancer" that I never really worried or freaked out.  Even being bald was kind of interesting. I had minimial SEs and it was pretty easy.

    Then it came back and my interest in it was over, lol.   I was very surprised to find that I was one who ended up with mets, and only five months after my last treatment. I never got much time to get over it.  But, once the shock and disappointment wears off, your positive nature will reassert itself, as mine has.  Hopefully, you are only facing a local recurrance and as tedious as it will be to do it all again, you at least know the drill.  If you are facing metastatic disease - well, that's awful, of course.  But, there are lots of treatments for us women now and it doesn't mean there is no hope.  

    Sometimes it seems so unfair - it's not your turn, it's somebody else's!  But, you did it once with positivity and grace and you'll do it again the same way.  I'm sorry life is dumping other stuff on you too but you do have a great husband and I would assume a good support system, so you'll get through this one  - and hopefully, twice is all you need to do.  

    Good luck to you.  Let us know what your path reports say. 

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  • spar2
    spar2 Member Posts: 6,827
    edited September 2011

    Jadegirl, so very sorry this is dumped on you again, it just isn't fair but as we all know life isn't fair.  I wish you the very best and sending up prayers for your healing and treatment.   hugs.

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited September 2011

    Dear all,

    Thanks for your continued words of comfort and support - it means so much to me as I am back at work today and am able to visit the site throughout the day. 

    I have yet to be tearily eyed, managed to tell a friend and had to cheer her up!  I also spoke with my support coordinator and she is ready to put me into a group as soon as I know what I am dealing with...yes, it's still scary but I feel better after hearing back from those who have gone through what I am going through now - thanks again girls! 

    I'm just really worried about my husband more than anything now, he hasn't had it easy at work for a while either (his work are going to cut back staff) and he is having a terrible day today...I keep telling myself what will be, will be and we can deal with it but I wish this news had come much later...it's so unfair...anyway, will take a deep breath and take it as it comes...

    I have a core biopsy tomorrow on my right breast and the PET scan Wednesday, then hopefully clarity on Thursday...

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  • 208sandy
    208sandy Member Posts: 2,610
    edited September 2011

    Jadegirl - hate that you're going through all this and so young.  You sound like a very strong and caring person and it seems like you have tremendous support at home and at work to help ease your fear even just a little.  Hate that your dh is going through tough times, it makes things so much harder for both of you.  Sending big, gentle hugs and love your way.....

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  • comingtoterms
    comingtoterms Member Posts: 421
    edited September 2011

    Jadegirl, this STINKS. Once is far more than enough. May the white light and healing thoughts I am sending you find you wherever you are. Know that there is an army out here praying for you. Tammy

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  • tammie
    tammie Member Posts: 738
    edited September 2011

    Jade big hugzz to you!! I too was recently told this crap was back to bite me in the booty, made me wanna go get a punching bag!!! Sending lots of healing vibes your way, we will all be here for you to rant to whenever you need to vent..Shoot without the ladies here idk how i would get by..Best of luck and much light to guide you on this path...Tammie 

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited September 2011

    Dear 208Sandy, Comingtoterms and Tammie,

    Awwww, you guys are so sweet - THANKS so much for your words of encouragement!  All the positivity sent has helped big time.  I am just so GRATEFUL you all took the time to respond to lift my spirits, especially since many of you have already walked this road before me and show that life goes on!

    So this week has been a roller coaster of emotions - we still don't know what is going on with my right breast (an ultrasound could not detect 2/3 'suspicious lumps') so I have a MRI with biopsy lined up...if there is cancer , then I am likely to go for a mastectomy (I don't think I want reconstruction and will take the implant out of my left breast too - my back will thank me for it!). 

    Regarding the lump under my arm, it is an aggressive 'recurrance' (HER2+) and although we won't know for sure till after surgery - one specialist thinks 5+ nodes have been affected. 

    So next week will hopefully be the MRI & plastic surgeon check up (see if my implant has indeed ruptured) - then off to surgery to get the 'mutha uckers' (anyone else a Flight of the Concords fan?) out... and then it's chemo (+ herceptin) and possiblity radiation too, that will be a new one for me.

    Meantime I am so confused about what to do about my job - I started under 3 months ago and I generally like it, but it is mentally demanding and we do kind of need the money...has anyone worked a demanding job during chemo as I didn't the first time?  I am thinking of asking for PT responsiblities to help balance things (e.g. 2 days of the week for 6 months) but am scared I am taking too much on considering everything... 

    I was lucky enough to have mild chemo SE last time (immune system was average or above the whole time), although I have been warned that it will be tougher this time...

    Thanks in advance for everyone's thoughts!

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  • greenacres
    greenacres Member Posts: 144
    edited September 2011

    Good morning!  I'm at work so I have to type this quickly.  First, I am VERY VERY sorry for your recurrence. I check here daily on your update.  I wanted to let you know though that I did work through my entire treatment(s).  During my six chemos which were 3 weeks apart - the first three I only took Thu (chemo) and Friday off (sometimes went to work on Friday).  Back to work on Monday.  Chemo #4 however, knocked me on my butt along with the next three.  That is when my oncologist chewed me out and said I had to work 1/2 days the week after chemo from now-on, and that was doable for me.  Otherwise, I went to work and only called "IN" once cause I had the flu.  During radiation, I'd work until 3:15 and run to rads every day for six weeks and home.  It was ALL very doable.  I have a high stress Fiscal/Manager job in a Sheriff's Department, full time, salaried and yes, LOTS of stress and craziness along with a husband and 9 yo son at home.  I did it....and you can too!  Please keep us updated. 

    GOOD LUCK to you and I'll write more on the weekend! :)  Sandra, Tumor 1.4 cm, IDC w/some DCIS and ALH
    Diagnosis: 12/1/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2+

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  • mgm1953
    mgm1953 Member Posts: 79
    edited September 2011

    JadeGirl,

     Sending some love your way. I know just how you feel, numb and angry and shell-shocked. Just got a recurrence myself, after 6.5 yrs. Everything just felt surreal and ruined. Been telling myself that the stress and bitterness etc. is not helpful (though I do think you have to go through it, cry it out, it's a grieving process).  If we're going to choose life, we have to make it worth it, that's what I've been telling myself. We'll get through it. Did it last time, will do it again.

    All best.

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  • lovetosail
    lovetosail Member Posts: 544
    edited October 2011

    JadeGirl, sorry for your recurrence.  I just found out last Tues that I also have what I hope is a localized recurrence - this only 8 months after finishing herceptin, and after aggressive tx - TCHx6 + mastectomy.  Quite a shock.  I'll be getting lots of scans this week to see the extent of recurrence, and if it truly is local then my onco says they can still treat me with curative intent.  I guess a girl can hope, right?  Good luck with your treatments - I worked at a demanding job all through chemo and it was doable - hopefully you'll be okay too.

     mgm1953 - sorry about your recurrence, do you have a treatment plan in place

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  • zoey1
    zoey1 Member Posts: 42
    edited October 2011

    I am a year and a half from Round 2. So sorry you are all going through this. Aside from extreme anxiety whenever someone in a white coat comes near me, I'm doing okay...enjoying my life.

     Warm Hugs to All, Z.

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  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited October 2011

    JadeGirl and mgm1953 - so sorry for your recurrences so soon. You guys have inspired me, I have always looked back to 1998 to chart my recurrence but that is not real now - I was dx with mets 09/2009 and on April 15th was delcared stable! Woo Hoo! Then the last week of July showed up and I haven't been right since. I feel awful. Little seedling sprinkles all throughout my abdominal cavity. I could either sit here and just go through the motions since I have started chemo and after only 2 teatments, I am having every side effect and I really don't feel like fighting anymore. But - you gals are doing it so I should just go ahead and get my fight on and go after this crap! I have been stuck on this page all afternoon and into the night - screw it...I need to get unstuck and get my rear moving - time to fight this beast for a 3rd time!

    Thanks again for this thread...it made my day!

    LowRider

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  • hope-is-all-i-have
    hope-is-all-i-have Member Posts: 17
    edited October 2011

    Hi Jade

    Big Big hugs and support to you. I am indeed sorry to hear about your recurrence. its a confusing state to be in. but hang in there and you will triumph. life is indeed unfair and a test. atleast we can say we dont lead 'ordinary' lives hehe...n see anything positive out of the most pathetic situations. n that takes a while and courage. I am not a BC patient but in the support group.

    here is my post:

    http://community.breastcancer.org/forum/106/topic/775919?page=1#idx_1 

    I would like to get your viewpoint in the way your support system is working for you. the first time we handled it well but second time around, I need to be stronger..my mum is not tech savvy (also English) and so I am her mouth piece here.

    love.. 

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited October 2011

    Hello again everyone - AND THANKS SO MUCH FOR THE CONTINUED LOVE & SUPPORT, you girls rock! 

    So much has happened since I last posted - life is as peachy 'as can be' considering...they no longer suspect anything in my real boob after another MRI (YAY!  No guided biopsy needed but lots of close monitoring will follow - at this stage I am likely to glow in the dark...), my gel implant does indeed have a leak so will exchange it for a saline one (love how my body now resembles that of car, and can be 'serviced'...) and surgery to remove 'the lump' is tenatively scheduled next week - so can't wait as so over getting random stabbing pains!  Also my work has been very supportive (considering I told them within my probationary period) and they have reduced my responsiblities until I am back on my feet which they understand can be around 6 months or so - I am so grateful!  

    mgm1953, lovetosail and lowrider54 - I am very SORRY to hear about your own recurrences and hope the warm words of inspiration from the many kind ladies responding to this post have also been of great comfort to you.  It's only natural that I still have down moments but am mostly 'myself' these days... I also have been in awe of the ladies who have faced this more than once - you are truly amazing and I hope to have the same courage as you to face this next challenge!

    lowrider54 - As a wise woman once told me "you've done it before, and you'll do it again!!" :)    Please feel free to vent on this thread anytime, you are not alone and we will be there to pick you up with loving arms!  Let us know how you get on - I hope today has been an easier one...   

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  • Slainte
    Slainte Member Posts: 152
    edited October 2011

    Just happened upon your post. Sending big hugs and positive support vibes your way. I am just finishing my year of herceptin and am also hormone negative knowing that my tumour is very aggressive as well. Good to hear you have a plan forming. Vent away here any time ! That's what is so great about this place. In the other world if you say anything negative it stresses everyone around us. Here you can say how you really feel guilt free :).



    Take care,

    Christine

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited October 2011

    Slainte - Congrats on reaching the last year of herceptin and I love your picture! Thanks for the advice - that's what I love about this website and the ladies here!  I was feeling incredibly stressed out and down when I wrote my initial post as I didn't want to burden my equally 'on the edge' husband with my feelings, and did not want to worry my friends/family yet as did not have the full picture...it's great to have 'this other world' to vent, especially to have the support of those who really understand what this crazy journey is like!  Take care and enjoy the end of treatment, yay for you!

    Hope-is-all-I-have - Sorry about your mom, please see PM.

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  • mgm1953
    mgm1953 Member Posts: 79
    edited October 2011

    Jadegirl-

    Just shows you how quickly things can change for the best. 

    Love2sail and lowrider-I wish you strength and good moods as you/we persevere through this. 

     I have an appt w BS on Wed, and my Mx on left breast & DIEP recon should be scheduled for sometime this month. So for now my pain is all emotional.

    Confession: do get bitter thoughts when I'm out seeing people who are happy, having fun etc.  It does feel like I've been cursed by the wicked witch. My daughter is 22 and occasionally I let a dark sarcastic thought slip out, try to make it somewhat funny. You can't bottle your fear and anger up.

    I've mostly been coping through distraction and telling myself that stress could make it worse, why torture myself. It keeps me relatively calm. My docs have said my prognosis is good, I should focu s on that (instead of why me?).

    ( That said, I have taken a few  ativan when the anxiety got bad....good to have an escape hatch).

    xoxo

    M.

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited October 2011

    mgm1953 - Sending you a big hug.  Sorry to hear you are going through so much emotional turmoil when the current situation is already stressful enough.  You know, it's natural to have bitter thoughts when life has been so unfair (it really has!)... life is better now then when I first posted but I still get pangs of sadness whenever I see my friends with their kids, a pregnant lady, somone my age dressed up ready to 'take on the city' or now even a young woman lifting weights at the gym - it reminds me of the things I don't or don't have a strong chance of having ... it certainly helps to get those feelings out (my friends and husband have been on the end of some terrible terrible jokes!) or to think about the great things that I do have (like a 'great sense' of humour...ha!)

    Your earlier words "you've done it before, and you'll do it again" really gave me hope for the future - I too hope you'll start feeling more like yourself soon. 

    Let us know the date of your surgery (I also had my left breast removed with reconstruction - feel free to PM me with any questions you may have).  I know I feel like there is a 'ticking bomb' inside of me at the moment and am anxious to get my lymph nodes out ...

    Take care for now (good to have an escape plan) and please let us know how you get on!  

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  • lovetosail
    lovetosail Member Posts: 544
    edited October 2011

    Hey y'all,

    I am doing better mentally - it's been a week since I heard of my recurrence so I guess I am getting used to the idea.  The surgeon did get clean margins on the lump, so at least more surgery isn't in the immediate future.  I now have dr appts out the wazoo - consult with rad-onc tomorrow, PET/CT + bone scan on Fri, and then breast MRI next Tues.  I've never had any PET/CT or bone scans, I am pretty nervous about all that.  I've played a lot of sports and what not and I know the bone scan is going to show up a lot of old injuries and what not that they'll have to sort through.

    Someone mentioned ativan - yeah I've taken a few of those myself this week!  But I am also trying to get some control of my racing mind.  I heard a quote I liked "Worry is a misuse of imagination" - if I can worry about these scans and imagine the worst, I could just as easily imagine myself to be a healthy old lady.  So when my mind goes to those dark spots I try to turn it around to see myself enjoying life 10 years (or more!) from now.

    Best of luck mgm, jadegirl and lowrider - here's hoping we we all do well with tx and soon be NED!

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited October 2011

    Hi all,

    Just checking in to see how everyone is going and to give an update - I had my surgery last week and resting at home.  We saw my breast surgeon and an oncologist today, was amazed to learn I had 33/36 nodes affected putting me at stage 3C (ER/PR- and HER2+).  Surprisingly I was not too upset but more relieved to know the details, I guess as I suspected I was at least stage 3 and have been following the positive long term 'survival' stories from ladies in similar situations or with stage 4.

    Anyway, the oncologist is recommending I do treatment in 3 parts with Herceptin:

    - Taxol (+AVC) x12 (weekly)

    - Radiation xdaily (6 weeks) 

    - Likely to do AC x4 (or XEC x4 depending on my progress)

    I am going to get a second opinion next week and start preparing for treatment, but it looks like I will start chemo after a friend's bachelorette party which I am so looking forward to after a crazy month!!  I'm also starting to think about where I'd like to go for vacation after treatment is done - it'll be about time to "let down my hair" (which techinically would be 'none' after treatment...) and enjoy life a little!!

    Anyway, that's it for now - I hope everyone is keeping in good spirits and doing well.  Would love an update or just to hear from anyone!

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  • SAOIsenberg
    SAOIsenberg Member Posts: 429
    edited October 2011

    JadeGirl - not in the same boat as you, but this thread caught my eye and I just wanted to say how upset and pissed off I am for you - it is crazy unfair to have a recurrence this close to finishing treatment. I do have a sense of the anger and sadness that go w/cancer interrupting family planning - when I was first dx'd at 32, I was trying to get pregnant w/a first child. Cancer f-ed all that up for us b/c I decided I should do 5 years of Tamoxifen and I'd have been 38 when able to start trying. We ended up adopting our daughter - great decision for us but not for everyone . . . just want to send you a virtual hug and wish you the best w/this new round of treatment and w/moving FORWARD, finally, when you're done.

    Enjoy the bachelorette party! You deserve some fun, darnit!

    Sarah 

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  • Deep81
    Deep81 Member Posts: 51
    edited October 2011

    hey Jade,

     I am 30 years old and was recently diagnosed with breast mets to the lung- i just finished chemo 6 months ago before i was re-diagnosed-it was a crappy time but i did a 180 and decided that i have beaten this before and i can beat it again. you just gotta be positive and take each day as it comes. I worked through my last round of chemo and rads and i was able to do that by putting "cancer" to the side. Its you in control not Cancer.

    for me the whole having a child really upset me but the way i see it is that i have been given a 2nd chance and its upto me to give a child a 2nd chance by adopting-plus i cant go thru nausea again-that has put me off pregnancy for good!

    Hang in there, keep smiling

    deep :)

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  • JadeGirl
    JadeGirl Member Posts: 35
    edited October 2011

    Thanks for sharing your experiences SAOIsenberg and Deep81!  It's nice to not feel alone with the whole "having a kid" thing...we were trying to get pregnant before my first diagnosis and hoping to try after things had settled down following my first treatment. We will definitely look at adoption now since it's highly likely I won't be able to have kids naturally after the second treatment - we have so much love to give (my husband is a natural with kids!) and our dog is getting too spoilt!  

    I am feeling generally more positive these days...although I have no idea what the future holds, I am grateful for the love and support given to me...

    Deep81 - you have such an amazing attitude, I love that you are just living life - you go girl!!  Actually I am getting bored resting at home and looking forward to going back to work.  Who knows what will happen down the road, for now we should just concerntrate on doing things that make us happy!  

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  • KeepingFaith69
    KeepingFaith69 Member Posts: 508
    edited November 2011

    Hello ladies.  Thank you soooo much for sharing your journeys.  I had a mestectomy, followed by 6 rounds of chemo, 20 reds and 12 months Herceptin.  I havnt yet finished Herceptin, with my last treatment schedule for the 29th of December.  My yay it's over party has been put on hold as a recurrence has been found underneath the scar tissue, right about the initial area of concern.  Last week I was absolutely gutted, this changed to angry, bitter and hopeless!  But to read these stories gives me hope.  One one hand it saddens me that you share a similar path to mine and on the other hand it is heartening!  I met with the surgeon today and the lump will be removed in 8 days. A CT scan has been scheduled for the day afterwards.  I look forward to having this puppy removed, knowing what the next steps are and kicking this to touch! 

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