Third timer

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mccathyg
mccathyg Member Posts: 38
edited June 2014 in Second or Third Breast Cancer

Hi all

Boy I am glad to have found this forum. Just been dx for third time. First dx 2000 lumpectomy + rad to left breast. Second dx 2005 left breast new primary grade 2 mastectomy + imm recon LD. Tamoxifen for a few months but as didnt get on with it and considered low risk stopped.

Now 2010 two new tumours grade 2 in LB recon. Thought they were fat necrosis as had been told nothing left to grow in. Jan 5th having mx of recon, cant keep it because large area to be taken away to cover both tumours. Because of rads skin wont stretch so implant has to go as well. Gutted and having trouble coming to terms with losing breast recon. Think I will have chemo this time plus hormone therapy.

Dont know how to feel this time. First time was psychologically devastated, second time handled everything alot better and was fine. But this time having to go thru everything for a third time and pull my life back together. I feel like screaming. Dont know what to think anymore. Trying to treat it like a chronic condition that flares up every now and then, too simplistic!!

Would be grateful to hear from anyone in a similar position.

Thanks

Cathy

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited December 2010

    ((((Cathy))) I am not in your position but I can feel your pain. I just wanted you to know that someone will be along shortly to help. Just feel my gentle hugs and take deep breaths.

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  • soulswithin
    soulswithin Member Posts: 154
    edited December 2010

    Cathy, I am also sorry to hear of the third return. I've always thought we all have that chance of  happening to us, and it makes me sad. Chemo is not easy. I just finished it and am now on rads and then Femara, which scares me also. But it is doable. My oncotype score came in higher grade than the original scores so I opted for chemo 3 months later after 3 surgeries. I shudder to think of all of us not getting correct scores to base our decisions on. Have you had a body scan?

    Geesh, after all you have been through I can see why losing the breast would be a screamer. Just know you have tons of support here, and that we totally understand how difficult this is. The frustrations drive me nuts, the whole thing is surreal and puts us in a time warp-. I try to distract myself as much as possible, because it is so damn tough!

    Hugs to you. I am wishing you the best possible, and thinking of you.

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  • aspen
    aspen Member Posts: 102
    edited December 2010

    Cathy, I'm so sorry you have to go thru all this for the third time.  I've been there myself.  First time when I was 42- left breast with lumpectomy and Rads.  Second time- when I was 48- rt breast, different cell type, had lumpectomy and Rads again.  Third time- exactly a year later, left again, third different cell type.  Due to already have had Rads bilaterally and now #3 and bilateral, had bil. mastectomy with sentinal node bxs.  I'm 55 now, just finished my five years of Femara in August(turned 55 on 8/30).My second time was my worst emotionally, divorced between #2 and #3.  When #3 came along, it was to heck with boobs-tired of dealing with them.   Have remarried and so far so good as the BC is concerned.  Hang in there- scream if you need to.  There really is so much support on this site.  You are stronger than you know, I'm pulling for you, think about you and if it is okay, sending up prayers as well.  Hugs.

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  • Lady_Madonna
    Lady_Madonna Member Posts: 472
    edited December 2010

    Cathy, I just wanted to offer you another sister (((hug))) and invite you to continue to use these boards as a soft place to land as you deal with this blow.  I'm so, so sorry you're going through this.  I hope this will be the "charm" and you'll never have to deal with breast cancer again. 

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited December 2010

    Cathy,

    This really sucks.  I am so sorry you are having to go through this again.

    So sending lots of love & prayers. NJ

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  • mccathyg
    mccathyg Member Posts: 38
    edited December 2010

    Thanks everyone. It helps to know there are others in the same position. Just trying to get myself prepared for my op now. Still feels surreal when talking to others about it and saying goodbye to people in work.

    Anyway have a good Christmas everyone and thanks again.

    Cathy x

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  • mccathyg
    mccathyg Member Posts: 38
    edited January 2011

    Hi All

    Well I had my mx last week and all is going well. Went for my results today and now told I wont have chemo but will have hormone therapy. Both lumps were grade 2 but clear margins etc. I feel very confused, know I should be pleased but I feel like I am not doing everything possible to make sure it doesnt come back a fourth time.

    We dont have the oncotype test here in the uk. I am going to see the Oncologist next week to discuss further. I understand about the hormone receptors etc but am really confused now about how this can come back for a third time yet I am still considered so low risk that chemo isnt appropriate.

    I am struggling to understand how I can go forward knowing that I have done everything I can or is it a case of benefit v risk?

    Can anyone help me to clarify all of this?

    Thanks

    Cathy

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  • aspen
    aspen Member Posts: 102
    edited January 2011

    Cathy,

    I'm a 3rd timer as well and had lumpectomy & rads. the first two times and bilateral mastectomy, bil. oophorectomy (had prior hysterectomy yrs ago) after #3.I finished my 5 years of Femara tx.in 8/2010.  Chemo was not suggested.  I had  all localized disease, small sized and with neg. nodes. and highly positive receptors.  There would have been no benefit for the chemo at any of these times and many side effects.  In my prior career, I was a Cancer Registrar and attended meetings every week with physicians discussing cases.  I had a fair amount of knowledge about what the treatment course would be and do feel I've done all I can except now to eat well, exercise and enjoy each day.

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  • lmc1970
    lmc1970 Member Posts: 168
    edited January 2011

    Hi Cathy-I'm a 3rd timer too. I was diagnosed at 36 with a grade 3 TN 9mm tumor-no node involvement. I had surgery and radiation. 3 years later it was in 15 of my lymph nodes. I had surgery and refused the rest of the treatment for many reasons. A year later (now) I have a 5cm+ tumor above my breast. I'm on chemo-the first lot did nothing so I will be changing to AC in a few weeks (having a much needed holiday beforehand). The first two times I handled with grace. This time I feel like crap. I am very emotional and I feel like I have lost all my strength. I don't know anything else to do but live one day at a time. At the moment I am in the middle of a major disaster in my State so I am grateful to have something to think about other than cancer. Not that I am happy that we have had a flood. I'm just tired of the focus always being on me. Many hugs to you-know that you certainly are not alone and I would be happy to chat if you need to. xoxo Lisa

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited October 2011

    Cathy, I hear you...gee, you've gone through a lot, and the decisions are tough. I too have been dx three times...and right now, I'm trying to figure out what to do. I'm dragging my feet on doing a mx.

    Cathy...how do you feel now? Do you regret your decisions? Do you wish you had done things differently?
    Diagnosis: 1/7/2011, Stage I

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  • mccathyg
    mccathyg Member Posts: 38
    edited January 2011

    Hi Barry

    Sorry you are also at this stage. I had my mastectomy three weeks ago and am doing really well. Last time I had Mx plus imm recon which was a much bigger op. I made sure I took my time for this op, had some counselling and really prepared which i think has helped me to deal with being flat on one side. I have some camisoles and have been wearing my falsie and have been feeling really positive about it all. I have kept the option of another recon open (tummy tuck this time!) but am hoping that I will be able to cope as I am as I dont want to go thru another big op.

    I have decided to have chemo this time as I want to throw everything I can at it so that it doesnt come back again. I will then have tamoxifen for five years. I am pre menopausal.

    The difference for me this time is that I am taking everything much slower this time really thinking things through so that I am happy to move on at my pace. 

    I have no regrets only really bugged that this has come back again. What upsets me is the disruption it causes but I am trying to treat it like a chronic condition. i.e. it flares up every now and then, I have have some treatment and then get on with my life again. Just hope I can live up to that analogy!!

    Sending you a cyberhug. Take your time and make decisions based on what you want to do.

    Cathy x

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  • sharalou
    sharalou Member Posts: 223
    edited May 2011

    I am a third timer too. Left breast (2005), Right breast (2010), now supraclavicular area.  Had MRI's and pet scan, and it's localized to that area, with a small trace in the chest, and they will be treating that with RADS, starting on Wed.  I have bee crying 24/7 from all this shit. Oh, I am also on the faslodex  injections (have had 2), and I think I am having some SE as in my mouth tingling, and numb, and feel crappy.  Would love to hear from others.  Here is my direct email-Shariwest@aol.com

    Thanks!

    Gotta love this board! 

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  • mccathyg
    mccathyg Member Posts: 38
    edited June 2011

    Hi Sharalou

    Sorry to hear your BC is back for a third time. Its unbelievable I know and I could not have imagined my being in this position 10 years ago.

    I have just finished chemo as I made the choice to throw everything back at it this time and take charge. I am still low risk! but am fed up with people telling me that. It doesnt ease the disruption that it causes to mine and everyone elses lives just because I am low risk. Will be starting Tamoxifen soon.

    So now I am looking forward to the main treatment finishing I am going to discover what the new 'normal' will be for me but am intending to get on with my life although BC will always be there in the background.

    I hope that your RADs are going well and try and take each day at a time. Dont worry if you feel crap and miserable sometimes, that is natural. Dont put yourself under any pressure to be brilliant at dealing with your BC. If you want to be angry thats fine. Do things that will make you smile and get as much support as you can.

    Sending you a big cyberhug.

    Cathy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Going into BC #3 - -

    #1 in 1996 at age 39, right breast - small 1cm with 10 out of 20 lymph nodes, ER.  Lumpectomy, chemo (AC) & radiation.

    Full hysterectomy in 2001, non-cancer tumor.

    #2 in 2005 at age 48, left breast - small 1 cm with sentinel node, ER.  Lumpectomy, chemo (Taxol) & radiation.  At that time, I asked about a double mastectomy with reconstruction - but the surgeon didn't think I should because of previous radiation.  Arimidex almost 3 yrs until I had "enough" of the side effects.

    Watching liver spots found in 2009.

    Now, 2011, going into #3 at age 54.  Again, cancer found by mammogram & ultrasound.  Seeing new surgeon next week (I "fired" the 2005 surgeon) - - - I'm thinking a double mastectomy, not sure what reconstruction option is available for me now. 

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  • She
    She Member Posts: 503
    edited September 2011

    Hi Sandi,

    I'm 2 years post bilat mx with DIEP reconstruction.  It was my 3rd different BC.  I'd had prior rads to both sides, 11 years one side, 8 years other side.  My DIEP was very successful and I'm really happy with the results.  I think the further out from rads you are, the better your skin reacts to reconstruction.  I was 42 in 1996 when it all began, RT first then LT then LT again for the 3rd time.

    I found a fantastic surgical oncologist and PS.  I had some issues getting the BMX & DIEP in one surgery but persistance paid off.

    Good luck and keep us updated.  We're a fairly exclusive club, we 3-timers!

    Hugs, She

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  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Sorry to hear about this. I have been diagnosed twice. First time lumpectomy, this time I will do bmx. Have you had genetic testing? I am brca 1 pos and should have had a bmx the first time, but no garauntees even with that. Do you have to do chemo this time?

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  • dreaming
    dreaming Member Posts: 473
    edited September 2011

    I am sorry for all of you, I know this can happen ,that 5 years mark do not exist for breast cancer, and also that the medical community do not realize that the majority of breast cancer diagnosed are on low risk patients.

    I have microcalcifications in my chest wall,and I worry, I am not the same person I was when first diagnosed, I really do not know what to do.

    Wish all of you to do well.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    Waiting - - - it so frustrating!!!  Waiting for some test results, waiting for my appt with the surgeon, which is this Thursday. 

    Trying NOT to be totally pissed about everything!!!  We were leaving for Arizona last week - had to put that off while we wait to know more.  Since June, I've been training for the Komen 3day in November in AZ - that's been blown away.  Walked 200+ miles to hear "you've got cancer AGAIN!"  Have a trip to Mexico the end of November & a BC Thrivers Cruise in April - - but now everything has to wait for cancer to control my life AGAIN.

    And knowing "most" of what is going to happen to me for the 3rd time, is probably worst than not knowing. 

    This is the only place I can say what I think - - no one knows the feelings - - especially with a 3rd time diagnosis.

     Cool

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  • nancysmile
    nancysmile Member Posts: 28
    edited November 2011

    I also have become a 3rd timer this week... Found small lump (lymph node) under arm nearest bc. 1st time-2000-lumpect., rad., tamox...2nd-2006-same breast - bilater, immed recon., chemo.    Had PET yesterday - showed isolated to the area - hopefully just that node.  Am seeing BS Monday to discuss options.  Praying no chemo.  Saw somewhere one cannot have Adriamiacin more than once.  BTW-radiation did RUIN my implant.  Sorry I didn't research further in 2006 - thought i was seeing the "BEST" plast.surg....hahaha.  Keeping positive it hasn't spread.  Am considering removing my good implant (silicone) and just digging the flatchested look.  I hate being uneven!

    Good luck to all of us!!! And thank goodness for this site.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Nancy - - How are you doing? 

    Since my post I've had a BMX with TE, had 3 fills so far.  My next "dreaded" step is chemo, which starts 12/12.  You're right can't have A again due to possible heart damage - -   I'm doing TC which I've had both - both made me sick in "their" ways, even with all of the anti-nausea meds. 

    My short story:  My #1 was in 1996 at age 39 - lumpectomy, chemo (AC) & radiation. #2 was in 2005 at age 48 - lumpectomy, chemo (T) & radiation. THEN NOW - - At least No radiation - chest area can't have any more. (All cancers were ER positive - #2 & #3 after I had ovaries out in 2001. All were invasive ductal, #1 & 2 had lymph nodes - this time they couldn't take any more. All cancers were stage 2.)

    Hope it's going OK with you - - -

    AND Good Luck to YOU!

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