Triple Neg stage 2b Reccurence

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cristiana
cristiana Member Posts: 9
edited June 2014 in Triple-Negative Breast Cancer

Hi everyone

I have 39 years, 1 kid, was dx with triple negative, stage 2b, G3, 2,2 cm, 1/3 nodes; chemo: 4 x FEC (5FU, Epirubicin, Cyclophosphamide) + 4 x Taxotere, 30 sessions of radio.

Anyone with the same diagnosis and treatment could tell me about their reccurence.

My onc said to do a check every 3 month for first 2 years and every 6 month next 3 years.

Next week is my first check after the treatment and I'm so scared.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2010

    My diagnose is a little different than yours, other than also being triple neg, but just wanted you to know that my treatment plan is the same as yours.  Every three months with onc for blood work and check up, no scans unless I have symptoms that last 2/3 weeks or longer, for 3 years, then switches to 6 months after that (God, I hope I make it to that point!), and every 6 months with my breast surgeon for mammos and ultra sounds.  I wish for you and all our other sisters, what I wish for myself - and that is smooth sailing with this beast.

    Linda

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  • angelsabove
    angelsabove Member Posts: 363
    edited March 2010

    Hey Cristiana..........

    I was told stage IIB....I had a larger tumor and 3 positive nodes......

    I was 36 at diagnoses. I too am in GREAT FEAR. I completed chemo 11/16/2009..

    I am now four months post chemo....My Oncologist has me on the same schedule as you...GIRL PRAYING IT STAYS AWAY......

    If you wanna talk just PM me.....I am now trying to live THE NEW NORMAL....I have 3 kids and a WONDERFUL HUSBAND!!!!!!!!

    Some days ARE SO DANG HARD......feel like we are in battle EVERYDAY!!!!!!!!!

    May God Bless Us All 

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  • angelsabove
    angelsabove Member Posts: 363
    edited March 2010

    Oh yea.....My Oncologist said she would scan every six months. She said that is not STANDARD protocol, but it is what she likes to do. I had my last PET right before starting Radiation. That was Dec 14th 2009....Thank God it was clear.....SO I Get to get the next scans in JUNE......UUUGGHHH I will be SO nervous then........

    MAY GOD BLESS US ALL 

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  • kmartin
    kmartin Member Posts: 78
    edited March 2010

    Hi Crisitana and others,

    I was dx in 3.08...so one year before you gals. I had a 3 month f/u one with oncologist and one with rad. onc. alternating for first 2 years (seeing someone every 3 months). I have also had a breast exam by gyn yearly. I had an MRI 6 mo. after dx and then a mammogram at the 1 year mark, MRI at 18 months and mammo at 2 years. I requested and was ordered a PET/CT at each year's anniversary and am happy to say all is well.

    Deep breath....

    I have to say that the most anxiety provoking time was at the 18 month mark for me...I began worrying about recurrence then, more than before. I had a few rough weeks of crying on and off...but after I hit the 2 year mark this month I have some sense of peace and calm.

     I know we all cope at different rates and with different responses, but what we all feel is changed forever.

     HOPE ~ my boss and my aunt by marriage have both PASSED the 5 year mark for TNBC....so hang in there! Chemo is only getting better for this cancer.

    Kathy

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Way to go Kathy..I am just one year out..today!  Happy me..I guess.but I feel that each day that passes and I feel better and better that it is a good thing..my goal is just 3 months at a time...I feel that once it is two years out I will feel better..but time will tell!  It's like you don't want time to fly by..but at the same time you do because it means you are further away from this beast....
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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited March 2010

    Hi everyone.  I was diagnosed in Nov 07, did chemo until Nov 08.  My onc counts from the date of my diagnoses, I sure hope he's right !  Either way I see my onc every 3 months well until May and then I go to every 6 months.  I dont have regular scans just when I have an ache or pain that scares me, which is alot lol. 

    I did a clinical trial with Avastin which was added into my treatment of 4 DD A/C and 12 weekly Taxols.  

    Teresa

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  • ivanna
    ivanna Member Posts: 5
    edited March 2010

    Hang in there! I was diagnosed at the age of 36 with a 3.5 cm tumor 1 node positive, triple neg. I am now 43. Just had a mamogram today and I finally do not have a panic attack waiting for results! I am not going to lie, I had many restless nights worrying about recurrence, I still worry, just not as intense as I used to! I realized today while at the doctor that I do not think about cancer every day! I do still think about it regularly, but I now am able to put it out of mind for much longer periods of time. My follow up was similiar to yours, although I did not have scans unless I had symptoms. I had breast mri's every year until 3 years ago. My insurance company didn't want to pay for them any more. The radiologist I saw today said he wants me to start getting the mri's again every year because of my dense breast.

    Congrats to all you survivors! We will never forget the loved ones we have lost to this disease, but will keep fighting to survive.

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  • angelsabove
    angelsabove Member Posts: 363
    edited March 2010

    I just LOVE this thread........KEEP THE GREAT STUFF COMING...:)

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Kathy...why did you u freak at 18 months?  I have mammo in May plus see onc and bs...I will freak about 2 weeks before all the appts...at my clinic they just do the mammo..if issues then the mri...do you think I should request an mri also?  I too have dense breasts,...plus an excellent insurance company..they have never ever turned downed any of my care at this point

     Ivanna...thanks for the positive post...good luck to you!  thanks for posting....to us newbies..for you "old timers" to come back on here and support us..well..it's awesome and we thank you for it

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  • cristiana
    cristiana Member Posts: 9
    edited March 2010

    Uhhhh

    My first check after treatment was ok. I'm clean!

    My onc said again every 3 month CT and mammo.

    I'm very happy. Kisses for all of you girls!

    One more question: regarding the beach, my onc said it's ok to stay in the sun but I must cover my right side where was the operation and rads. Any other advice? I leave near the beach and I want to enjoy this summer.

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  • cmb35
    cmb35 Member Posts: 1,106
    edited March 2010

    May 2, 2005 I found the lump, I can't believe I'm almost to the 5 year mark. Stay strong ladies!

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  • Tabatha00
    Tabatha00 Member Posts: 133
    edited March 2010

    I finished chemo January 22.   On March 1st I had bilateral mastectomies (cancer only in right breast).  Before chemo I had microscopic cells in 1 lymph node.  After surgery all lymph nodes were clear.   I'll see my oncologist every 6 months but he doesn't do scans or anything like that unless of course I freak out about a pain I'm having but by that time I'll already have myself diagnosed.  lol

    I am taking my journey day by day.   I will start radiation within the next 2 weeks.   I try and not let the black cloud hang over me because I'm a glass half full kinda girl and this cancer thing ain't gonna take me down without a fight.  I am happily married, 2 beautiful children (they take after their mom) and wonderful family and friends.

    I am going to LIVE my life and not be scared by the "what ifs".   Think about it......if that's all we think about is the what if's we've spent another day worrying when we should be living.  I have down days too and I'm no Sally Sunshine all the time but I refuse to let cancer change me.   I'm going to keep on laughing and push the C word to the back of my mind.

    Tabatha 

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    Tabatha...great post..you took the words right out of my mouth.....you are just a little behind me..had my one year cancerversay a week ago..it does get better..I FEEL good!  I figure every day that I feel good is a great thing....I almost feel..."normal"...and then I think do I dare feel "normal" and then I'm like hell yeah....why not...until I don't feel normal I'm going to enjoy every second!

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  • yogamommy
    yogamommy Member Posts: 115
    edited March 2010

    I love this thread. You all inspire me.

    May God Bless Us All

    Vickie

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  • MsBliss
    MsBliss Member Posts: 536
    edited March 2010

    Dear Angel,

    PET/CT scans every six months?  That is a lot of radiation.....I have noticed some oncs and patients don't favor this type of schedule because the radiation is an added risk factor.

    Maybe you can double check with yoru doctor?

    Bliss

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  • kmartin
    kmartin Member Posts: 78
    edited March 2010

    Titan, I am not sure why I felt so much fear and anxiety at the 18 month mark. I think I finally allowed myself to really think about the possibility of recurrence. I had really pushed that into the recesses of my brain and had not dealt with any of the fear related to the cancer and possible recurrence. I was working and "back to normal" and it hit me. So much for denial! I had an appt. with my onc. and that might have also been a trigger. All I did for 20 minutes was cry to him.... he just said "it's about time you cry." He said I coped like a hurdle jumper. I ran and met every challenge head first, running and jumping over them...but at the end of the race I collapsed. That is one of the ways he sees people cope.

    Kathy

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  • angelsabove
    angelsabove Member Posts: 363
    edited March 2010

    Msbliss......I will talk with Oncologist about that. I just know that is the protocol she does. I know her other patients do that too. Thanks for the advice on the radiation.....

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  • Titan
    Titan Member Posts: 2,956
    edited March 2010

    I think we all need to collapse and let it out now and then!  I let my family have it shortly after Christmas and they have been fine ever since...they just don't realize some time that though we are trying to be "normal" every once in a while what has happened or is happening just hits us and we lose it...then we gather ourselves back together and go on.  I am so thrilled when I realize that a day, or even a few hours have gone by and I haven't even thought of BC....

    Angels..you may be getting the scans because you have some lymph node involvement and they want to be careful with you...I asked my onc about scans and he said that at my facility that they do scans if one node or more is involved...I asked him if I could have a scan and he said that I could have one any time if I wanted too but that he didn't recommend it because if would freak me out more than it may help me....however, I'm keeping it in mind and may have one next summer sometime...we will see.

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  • angelsabove
    angelsabove Member Posts: 363
    edited April 2010

    Titan....Thank you for that information....

    MAY GOD BLESS US ALL 

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  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    I would like to have a scan but I'm too chicken to do it right now....

    I know that they are concerned about "too much radiation"...which I find kind of humorous since most of us have had chemo, rads, multiple mammos, etc...what is a little bit more radiation????

    Isn't there some saying about the cows already being out of the barn or something???

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  • cristiana
    cristiana Member Posts: 9
    edited April 2010

    Regarding "too much radiation..", my onc said: if you fly from Europe to America you will get more quantity of radiation than 4 mammo per year.

    So, I will do every 3 month mammo and CT.

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  • tibet
    tibet Member Posts: 545
    edited April 2010

    my onc told me that PET CT scan radiation is less than 1 flight from Asia to USA.

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  • tibet
    tibet Member Posts: 545
    edited April 2010

    Kathy

    It's nice to know your boss and aunt passed the 5 yrs. Did they have positive nodes ? Do you talk to them about it?

    I fear all the time. I need help to calm down a bit. I worry too much....

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  • cristiana
    cristiana Member Posts: 9
    edited April 2010

    When you said "2 years without comeback" what does it mean?

    2 years from first diagnostic or 2 years from the end of the treatment (surgery + chemo + radio)?

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  • angelsabove
    angelsabove Member Posts: 363
    edited April 2010

    bump

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  • psp2pdx
    psp2pdx Member Posts: 38
    edited April 2010

    geesh!  now I have to worry about flying and radiation?!! 

    can anyone tell me if they have had bone mets with tnbc?Frown 

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  • kmartin
    kmartin Member Posts: 78
    edited April 2010

    Newalex,

    Neither had positive nodes...the brats! In the first year of my treatment I talked with them all the time about treatments, tests, anxiety, etc. It really doesn't come up too much any more. Sometimes my boss participates in the support group that I go to...so I hear some of her thoughts about her cancer there...but I really don't think she spends too much time thinking about it any more. She says it has moved back in the recesses of her mindfulness. My aunt is waking in the D.C. Avon BC Walk this weekend, and I expect she will be re-visiting many of her feelings about having BC and being a 5 year survivor of TNBC. I am going to watch her cross the finish line on Sunday...can't wait!

    Kathy 

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  • willy2351
    willy2351 Member Posts: 5
    edited April 2010

    Does anyone understand the purpose and function of the every three month check-ups with oncologist?  Is there a medical point to it, or is it more for comfort and appearance sake?  I don't mean this too sound negative; I am just curious since check-up usually does not include any type of scan.

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  • kmartin
    kmartin Member Posts: 78
    edited April 2010

    Hi willy2351,

    I think the main purpose is to answer any lingering questions, also to assess us for new symptoms or concerns. Such concerns might include the emergence of new post-chemo side effects like neuropathy, menopause, weight gain, etc...then the intervention can occur earlier rather than later. I found it hard to not see my oncologist after such an intense experience, so I found emotional comfort in the regular appointments, at first. Then, after one year, he suggested we back off to every 6 months and I was fine with that.

    Kathy

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  • Titan
    Titan Member Posts: 2,956
    edited April 2010

    I just saw a study on the internet..I will give you the address:

    http://foodforbreastcancer.com/news/early-recurrence-more-likely-with-triple-negative-breast- cancer,-but-risk-of-reurrence-not-higher

    Hopefully you can find it..basically it said that our risk for recurrence is NOT HIGHER than estrogen positive cancers..but if it is going to happen it will happen earlier.

    I guess that is good news...that is why they urge lots of monitering for we tn's during the first 3 years after diagnosis.  

    This was based on 445 women only..so take what you want from it.

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