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CALLING ALL STAGE I SISTERS

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Comments

  • Baxter
    Baxter Member Posts: 91
    edited December 2009

    Hi Ladies,

    I'm Candi from Maine.  Glad to join the group. I had a mastectomy 10/17/08 when DCIS was found. It was grade 0. During my 6 month follow up in October 09  with ultrasound they found something and it was a 1 cm tumor. I had second mastectomy 11/9/09. I feel so thankful for my incredible breast surgeon and plastic surgeon. They are both top notch. I know I wouldn't be as well as I am if it  weren't for them.

    Because the second cancer was invasive they had me meet with an oncolgist. She said that with my stats she would suggest Tamoxifen. When seeing the side effects I asked her if it would greatly impact my chance of reocuurance if I decided not to take anything and she said no.   

    It's a personal decision for everyone, but for me, taking a pill everyday would just keep reminding me of my cancer and I would wonder what the medication might be doing to my body.

    I can't speak for anyone else, but I think once you have been diagnosed with cancer, you never feel totally safe again. Though you don't dwell on it, I think it's always in the back of your mind that a breast related cancer could crop up. I wish they would develop better diagnostics for these other cancers so they would not have the chance of becoming so advanced before detection. THAT would be a great gift for 2010!

    Best to you ladies! Happy New Year

    Candi

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    Candi

    Hi and welcome to the club...  Sorry you are having another round with this bc monster.  Did you get chemo at all??  Just wondering...    I think with negative nodes, sometimes that decision can be difficult.

    Hope everyone has a happy & Healthy New Year!!

    Harley

  • Baxter
    Baxter Member Posts: 91
    edited December 2009

    Hi Harley,

    No, I didn't have any chemo. In each case the mastectomy was the only treatment. Because the DCIS was stage 0 and non-invasive my medical team said there was no need for further treatment. With the second cancer being only 1cm and stage 1 grade 1, the only thing my oncologist recommended was Tamoxofen. 

    I came right out and asked her if she thought my decision to not persue any further treatment would be irresponsible and she said no. The stats gave me a high rate of non-reoccurence and for the few points I would gain from the Tamoxifen didn't seem worth the potential side effects.

    Cancer comsumes your life when you are going through the testing, surgeries and decisions.  I hope the more my life moves toward normalcy in the next weeks and months,  the less anxious I will be about reoccurance.

    Candi

  • elimar
    elimar Member Posts: 5,890
    edited December 2009

    "I can't speak for anyone else, but I think once you have been diagnosed with cancer, you never feel totally safe again. Though you don't dwell on it, I think it's always in the back of your mind that a breast related cancer could crop up. "

    I have that tendency, but try to fight it off.  I have to say that once I got out of the phase of active treatment (now just on Tamox.maintainence) it is a lot easier not to feel like Cancer-Girl every day. I agree that we never again feel truly free from it, and I am mentally putting it in a little pink box and storing it way back in the cobweb corner of my mind.  Of course when it's time to get a new screening or something, the fear factor returns.  I've got that coming up in a couple weeks.

    I was writing another post about the "cancerversary" and I realized then that I consider myself cancer-free now and until the time they tell me otherwise.  I have to think of it that way to keep my sanity.

    I know that this may be a moronic analogy, but I've been in a car accident or two.  (Not my fault people.)  Still every day I get behind the wheel and drive without actual fear.  The roads are more crowded these days and my reaction time is not as quick as in my youth, so maybe my odds for a collision are worse, but I do what I can do to be safe and go about my business.  That's me and B/C as well.

  • mikita5
    mikita5 Member Posts: 60
    edited December 2009

    Hello Ladies,

    I'm Kathy, live in WV and was diagnosed with DCIS 2008. Had bilat mx early 2009 with DIEP reconstruction. I'm like others here who didn't want to go thru the stress of another 'lump', more tests, more biopsies.  I felt I couldn't go thru this over and over and over. My oncologist, doc, husband, relatives thought I was 'crazy' for opting for this 'drastic' decision, BUT after mx, pathology came back with two more spots of DCIS in the affected breast that mamo didn't see... I followed my heart, stuck to my decision and now know it was the best decision for me. I am NOT saying this is the route to go. I'm simply saying this was MY way to deal with bc. 

    Everyone just needs to follow their own heart. No one else should make the decision for us.

    Go with your gut instinct. It's usually the right one.

    Blessings to us all.........and a long and healthy life!!

  • jduford
    jduford Member Posts: 23
    edited December 2009

    I am actually a stage 2  but I chose the double mastectomy and have never looked back.  I have no worries  about reoccurrance  in the other breast cuz it is gone, and I had an amazing plastic surgery, so my new boobs are much more flattering in clothes than the old ones.  I have also had people who just had  a single mastectomy say they wish they would have done what I did so they would be balanced and have one less thing to worry about.  Good luck with your decision.

    Julie

  • cakeisgreat
    cakeisgreat Member Posts: 188
    edited December 2009

    I'm back from all the festivities!

    Mikita5--Thank you for sharing.  I am scheduled for a double mx and DIEP recon on Feb 18 for exactly the reasons you mentioned...I got the lumpec/rads in June-Oct and I am just not settled that it was the right thing, so I went back and asked for mx/DIEP.  Sometimes I think maybe I'm being too drastic, but my cancer had sporadic DCIS and invasions, so I just feel that there is something lurking in there that the mammos are not picking up...or if not yet, I will have a reoccurance at some point.  I'm getting nervous about the surgery/recovery, but your story reminds me that I am doing exactly what my heart tells me to...and also your signature line REALLY confirms it because I feel God guides those who ask Him for wisdom...so thanks again!

    PS--I take Tamoxifen and have no side effects at all (unless that whole bladder pain/UTI have anything to do with it...then that would be a side effect)

    For those who have had mx's and recon...is the pain REALLY bad when you wake up?  I'm so nervous!!!  I have to start checking out the other boards on this again.

  • ronqt1
    ronqt1 Member Posts: 565
    edited December 2009

    Hi all, cannot remember where I blogged last on this site, I was supposed to do second fill today, after postponing it 2 weeks ago, but because of my scab (still) near incision, no fill today. Have to wait 3 more weeks.PS said that it would not effect the timing of the hopefully breast implant surgery and working with my healthy breast in March. For some reason my lower right side of back is starting to ache, another ailment. I am on Arimidex and blog on Arimidex site as well.

    Just wanted to say hello newbies and wishing everyone a Health and Happy New Year.

    Peace and joy and hugs.

  • Meece
    Meece Member Posts: 10,618
    edited December 2009

    Welcome to the newbies.  Unfortunately it seems that we a have a lot of new sistas each week.  Wouldn't it be reat if we were all hear because we liked the same vegetables?

  • eph3_12
    eph3_12 Member Posts: 2,704
    edited December 2009

    Hear ye! Hear ye! I love carrots, but not cooked!

  • Meece
    Meece Member Posts: 10,618
    edited December 2009

    I love just about any vegetable, but raw carrots or celery make my throat itch.

  • kt57
    kt57 Member Posts: 75
    edited December 2009

    Broccoli, cauliflower and carrots zapped for 2 minutes in the microwave -- that's my new lunch every day --  along with carrot sticks and celery..... my nose will twitch like a rabbit soon LOL!

  • kt57
    kt57 Member Posts: 75
    edited December 2009
    Aimee, Sorry to hear your counts tanked.   Mine did the same -- I was in "quarantine" the first cycle, did neulasta the second cycle and neupogen for the last 4 rounds -- really helped to kick start the WBCs.   Hope you are feeling stronger.  My heart goes out to you moms with young children.   
  • mimi1964
    mimi1964 Member Posts: 851
    edited December 2009
    Hi all I am Renee form Alabama!  I have been posting on this site since October when I was dx with IDC.  I am a nurse and have been one for 26 yrs.  I work primarily with geriatric patients.  I am the Directors of Nursing in an Assisted Living Community.  I am currently doing radiation and I'm on treatment #13 out of 38.  I didn't have to do any chemo per my Medical Oncologist (not my decision).  I wasn't tested for the BRCA or an Oncotype (not sure why).  I have a not so wonderful Seroma in my breast that tends to be a little painful at times.  I go back to see my Med Onc in Feb once my radiation is completed and I will be started on one of the AI inhibitors, Femara or Arimidex.  I am a little worried about what the side effects of the medications are going to be.  I had a total hysterectomy almost 8 yrs ago and have been through the worst part of the hot flashes this past summer before my BC journey started and it seems that they (hopefully) are over.  The last thing I want is to feel like I'm 80 yrs old with arthritis since I'm only 45.  How are any of you doing with these meds?
    Renee
  • Makratz
    Makratz Member Posts: 1,605
    edited December 2009

    Hi Renee,

    Welcome to our club.  Sorry you had to join.  I am on Tamox since I am premeno.  I'm sure some ladies will be along soon tell tell you about their postmeno experience.  I just wanted to welcome you!

    Hugs,

    Linda

  • sheila888
    sheila888 Member Posts: 9,611
    edited December 2009

    Hi All the sisters who just joined the group.

    mimi1964..... I am on Femara since March of 2006 with no SE except the beginning used to have some hot and cold flashes.

    All vegetable lovers...My friend makes fun of me because I actually am happy with fresh veggies and fruits.

    Have a Good Night everyone!.

    Sheila

  • jsh22
    jsh22 Member Posts: 17
    edited December 2009

    I noticed a few of you girls were on Tamoxifen only and are not having too bad of side effects, if any.  I also notice that one of you...I think it was Candi said she chose not to take the Tamoxifen.  I have just started taking the tamoxifen 2 days ago and was going back and forth about taking it or not...hence am going for a second opinion.  I did not like the possible side effects either and wondered if it would really prevent a reoccurence.  It says that "it may", but I am not sold on it.  Can see it working in breast where there was just a lumpectomy done, but not sure if it is effective if mastectomy is done.  As far as it preventing it coming back in other breast or elsewhere in body, I don't know how effective that is either...questions I need to ask! I feel with clear margins and no lymph node involvement the chances are quite low anyways for cancer to come back.  Tamoxifen must do something though, or I think it wouldn't be prescribed so much, right?

    o2bhealthy(Michelle)...that is a great idea to get baseline uterine measurements to watch for the possibility of the uterine cancer as a potential side effect from the tamoxifen.  I think I will ask my doctor about that...didn't know that was something they did.  Was that the only reason for the measurements...because you were taking tamoxifen?

  • Harley44
    Harley44 Member Posts: 2,126
    edited December 2009

    Hi Renee,

    I have been taking Tamoxifen but will be switching on Jan 1st to Femara, which is one of the AIs.  I don't have any info. to give you about my experience with it...  I guess we'll see...

    Sorry you had to join this club, too, but this is a great group of women, and they will be able to answer any questions you may have.  It can be a bit of a bumpy ride at times, but we have each other for support.

    Hugs

    Harley

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited December 2009

    Seyla and jsh22:  I had a cyst on left ovary when I had my annual exam in June of 08...this was before BC and we choose to monitor it...found my lump in April 09 and was so focused on the breasts so kinda forgot my annual until after surgery, chemo and such...had appointment for my annual in Oct and scheduled f/u US for cyst at the same...cyst was gone Laughing ...I asked the US tech to get baseline measurement because I was going to start Tamox and my gyn agreed it was a good idea. I would have asked for a baseline regardless just because I do worry about uterine cancer.  I have been on Tamox for 30 days and so far no side effects ...I have been in chemo menopause since July and am really enjoying the no period thing... I had clean but a small area of thin margins and choose not to do rads so I felt I needed to take the Tamox as added precaution because of my HER2+++ and ER+ status.   I can alway stop taking it if the SE's get bad.

    I have noticed there are not many HER2+++ women on this thread too...hummmm, something to ponder...make me all the more grateful that I found the lump so early...actually mammo found 2 more spots deeper in the breast so I was very blessed to have caught it so soon.  My cancer was in my right breast but I choose a Bil MX as well because I just did not want to worry about my other breast betraying me too...

    Welcome to all the newbies!  

    Wishing a Healthy and Happy New Year to ALL!!!

  • valjean
    valjean Member Posts: 1,110
    edited December 2009

    Renee ~ welcome!

    I have been taking the AI Aromasin, & am doing very well on it, with minor SE's. Once in a while, the first thing in the morning, I have some numbness in my fingers, but it passes. I have had no joint/muscle pain. I take Glucosamine/Chondroitin, & did before I ever started the AI. I have heard lots of sisters say they find relief while taking that supplement, but it takes a few weeks to really take hold, so I would suggest starting that a few weeks before you begin the AI, if you decide to take that supplement. I guess extra Vit. D helps with joint/muscle pain as well, which I also take. The HOT hot flashes & the COLD cold flashes do still bother me at times, but, hey, I can live with that! It was more frequent when I first started it, but they are now better.

    I have been on the Aromasin since this past February & was on HRT before that. When I stopped that cold-turkey, I really had intense hot/cold flashes.

    I know lots of ladies have more SE's, I have been fortunate. Usually one only hears about the bad stuff, the ladies who do okay don't complain, hence, they do not post about it. I try to tell people my SE's are minor so they can know not everyone has a problem with these AI's.

    I wish you the very best of luck with whatever AI you use.

    {{hugs}}

    Valerie

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited December 2009

    jsh22 _ I am also an extensive metabolizer so I know my body will break down the Tamox correctly for the most benefit...make sure to ask your Onc to run a CYP2D6 test to see how well you will metabolize Tamoxifen...

  • kac
    kac Member Posts: 43
    edited December 2009

    Hi Renee,

    I started Femara in November this year.  I'm 44 and had been on Estradiol for 8 years.  When my mammo came back suspicious my Dr. took me off the estradiol cold turkey.(in July and I live in Florida)  I had major hot flashes right away so the Femara didn't seem to have that much of an impact on those.  It seems like I'm freezing a lot now too!  About 2 weeks into taking Femara, my heels, toes, fingers and wrists started hurting.  Aerobics actually helped my feet a bit but then I had my 2nd reconstruction surgery 2 weeks ago and am unable to do them for a bit.  I did start walking though.  I don't like these side effects but for now I told myself I would take it since I chose not to do chemo. (benefit didn't out weigh the risk). 

    Before I started Femara I asked my Dr. about taking glucosamine/chondroiton(?) supplement for joints and she said to wait because there was some controversy about it right now.  I haven't done any research on that yet but will start because I'm really feeling like I'm very old. 

    I know everyone is different so I wish you the best.  You'll have great support here. 

    Take care,

    Kelley

  • jsh22
    jsh22 Member Posts: 17
    edited December 2009

    o2bhealthy(Michelle)...Thanx for info.  I never heard about that test...CYP2D6.  Is this a test you take while on the tamoxifen?  Maybe since I just started it 2 days ago my onc hasn't had a chance to tell me about it.  What do you look for as far as results in this test?  Is it a blood test?  -Janet

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited December 2009

    jsh22 -  it is a blood test...I had to ask my onc for the test and only because I had read about on the site!!! Apparently not many people had asked for the test because it took them almost an hour to figure out what tube to draw the blood in...check out the Hormone Forum there are a few threads there that discuss the CYP2D6 test and what the poor/intermediate/extensive metabolizer means.

  • Nicole112
    Nicole112 Member Posts: 130
    edited December 2009

    jsh22, I am currently on tamoxifen... I did however do the chemo and rads, too. I am interested to see if any of the ladies have feedback about the second opinion... and I am Most curious about what advice the Cancer Treatment Center of America has... I have seen the commercials but never reached out. Please share your experience...

    When I look back at my diagnosis, treatments, etc... it is all such a whirlwind, happened so fast... like most of us, I was not expecting the diagnosis and then NOT AT ALL expecting the treatments involved in this disease! With this said, I had my surgeon and my onc which I trusted from the start.

    Congrats on getting through the SURGERIES, this is a GREAT accomplishment!

    Meece- Happy New Year!

    Sheila- Your daughter must still be in town... :) This is great, Happy New Year to you, too! 

  • Jaimieh
    Jaimieh Member Posts: 925
    edited December 2009

    One of the Her2+ girls checking in...... 

    I chose to do a bi-lat. with immediate reconstruction which later failed after exchange 2x....grrr...  Now I will be going to NOLA on Jan. 26 for some type of flap surgery.  I am not sure if I am having S-Gap or Lower Lumbar gap but I will find out the day before.   BTW, I do not think my reconstrucion failure had anything to do with my PS.  I just kept making seromas.  I sure hope my reconstuction will be a success this time. 

    Nicole I completely understand not expecting the diagnosis.  I was 32 at the time of diagnosis and it shocked me and still to this day does. 

  • sheila888
    sheila888 Member Posts: 9,611
    edited December 2009
  • sheila888
    sheila888 Member Posts: 9,611
    edited December 2009

    HAPPY AND HEALTHY YEAR TO ALL MY SISTERS.

    WE ARE A BUNCH OF CARING WOMEN TRAVELING THE SAME JOURNEY.

    BEST WISHES FOR THE COMING YEAR.

    SHEILA♥

  • Onehalf
    Onehalf Member Posts: 21
    edited December 2009

    Denise joining in here. First of all I need to explain my sign on name "Onehalf" No the name is not my Breast Cancer treatment....I had a lumpectomy LOL!. The name is related to my last name.

    I am so happy to see ladies on here from the years 2005,6,7 ...I was dealing with my Breast Cancer last September in 2008. Just recently had an Oncology check up, mammogram and even a pap smear....Everything is CLEAR in case you couldn't hear I was singing the word clear.

    When I got the little postcard in the mail ( Kaiser method ) to tell me my mammogram was clear, well I have it up ready to be framed and I have decide that I will frame each year that comes in. 

    And yes I am finding out there is life after Breast Cancer. 

    Here last year at this time the only vision I had im my head was my breast....now I only think of it when I run into something that reminds me.....Like something on the television, hearing of someone else who is going through this experience, and just recentily when I was decorating my Christmas Tree, a friend reminded me that she had helped me put the tree trimmings away last year, as I just had chemo and did not feel like dealing with anything....boy did the memories come flooding back.

    It is good to forget and go on, but still having something like Breast Cancer will always be a part of me, something I will always hold on to, something that even though it meant taking a part of my life, it also gave to me.....

    To me I have learned to look at life differently. Not taking family and friends for granted.

    Learning to let "stuff" just roll,

    And most important, learning to love myself

    Cheers to all....for new beginnings, each day is a new beginning to us all!

    Denise (Onehalf)

  • Meece
    Meece Member Posts: 10,618
    edited December 2009

    Cheers!

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