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Calling all TNs

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Titan
Titan Member Posts: 1,313

I think that we tn's need to have a sign up list like some of the other threads have...maybe put your age, and also what treatment you have had or are now having.



What to do you think?



I can start: age 50, diagnosed at age 49 1/2, lumpectomy, 4 AC Dose dense (every two weeks) and 4 Taxol, Dose Dense every 2 weeks. 35 rads (including 7 boosts) mammogram every 6 months for 5 years (I think). see the onc every 3 months for 3 years, see the Bs every 6 months for 3 years (I think). see the rad onc 1 year after rads...probably won't see him any more after that...

I think this may be a good way to get all together...we can still have separate threads..but sometimes it would be nice to just go to one thread and have a cry or concern without worrying about not being on topic

What do you all think?
..

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Comments

  • jenn3
    jenn3 Member Posts: 388
    edited May 2010
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    I am 43, dx'd right before my 43rd birthday.  Bi-lat mx - 14 nodes, 4 were positive, 4 DD AC, 12 Taxol, 33 rads (all w/bolus - 5 boost).  I was in the Avastin trial, but rec'd placebo.  I have not done recon yet, but am planning on it sometime in the next year. 

  • jodiel1
    jodiel1 Member Posts: 3
    edited May 2010
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    My mum was dx at 41. She has had 3 fec, one evey three weeks and 3 toxal. Just started rads, 18 lots in total to complete. I see that lots ot you have a lot more sessions of radiotheropy, not sure why? Maybe its different here in england. Not really sure how they decide how many sessions you have? No other scans as of yet and not sure about any other follow up plans.

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010
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    I am 48 1/2, dx'd at 46 1/2.  Lumpectomy, SNB 0 nodes, 4 TC, and then 35 rads.  Participating in bisphosphonates study ibandronate arm.  I see Onc every three months (we are trying to extend the time between visits but there are trial requirements to be met), BS supposed to be every six months but I have decided to stop seeing her (I've had enough).  Rads Onc had my follow-up last fall but she wanted to see me again in July because I had concerns about my stress level and maybe pursuing a prophylactic DMX.  I get an MRI 1x a year and mammogram 1x a year.  Bloodwork at each doctor visit but usually it is to check my creatinine levels for the trial.   I also see a therapist to help me get my head around the whole past, present and future.

    Lorrie 

  • kad22
    kad22 Member Posts: 58
    edited May 2010
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    I am 37, dx'd at 36 1/2. Bi-lateral, 4x's AC every three weeked began 4/8/10, then 12x's T every week. Mom had BRCA gene had both overian and breast cancer - died from cancer Lukemia. Her twin had breast cancer and passed away from it - both dx'd in their 30's.

    I am scared about this whole TN diagnoses - my mom was on Tamoxifin and was free for 20+ yrs. Don't know what this means for me? What to do? Scared of my diagnoses.

  • lrm216
    lrm216 Member Posts: 534
    edited May 2010
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    Received my diagnose as my 62nd birthday gift last February, 2009.  Had a 1.2 cm IDC nodule 5 cms below nipple at 11:00 in my right breast.  Had large batwing type lumpectomy and needed re-excision 2 wks. later for two dirty margins.  Went on to 4 DD A/C every two weeks and one DD taxol (instant neuropathy so was switched to) 3 DD Taxotere every 3 weeks.  33 sessions of rads (with 5 boosters included).  See Onc every 3 months and BS every 6 mos (for mammo and US).  I still live in dread fear of this rotten disease coming back or even still sitting in me somewhere just ready to pounce. I am a widow, must work, and raise my 14 year old grand-daughter.  It's been a hectic ride - but so far doing well.  I pray it continues.  My very best wishes to us all.  I hate this freaking disease and the total disruption of all of our lives.

    Edited to add:  No BRCA test done due to my age and no history of any cancer on either side of my family.  Had mammos since age 40 - missed only one in 2007 - figured I was fine - never even had a call back and lo and behold - guess what on my 2008 mammo!  Go figure. 

    Linda

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    Great idea for a thread Titan!

    I was 45 1/2 when diagnosed. Caught on my very first baseline screening mammogram. In Ontario, Canada, where I live, mammogram screenings do not start until 50. My doctor likes a baseline at 45 (thanks goodness!!). No family history here. Had lumpectomy and Taxotere/Cytoxan x4...then 21 rads (16 whole breast/5 boosts). I will be seen by my surgeon, medical onc and rads onc initially and at least once every three months by one of them. I will have one mammogram a year. 

    Sherri 

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011
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    Thanks, Titan, for starting this.

    I had a routine mammo in Nov (age 55), was called back for a digital, diagnostic mammo, where they saw calcifications they assumed were benign.  No lump.  I had a stereotactic biopsy a couple of weeks later, and a call the next day, right before Christmas, saying it was cancer.  My primary care doc said it was DCIS and not to worry, but got me in with a surgeon two days later.  She explained the cancer was invasive beyond the duct.  I had a lumpectomy in Jan with SNB, 0 node involvement and good margins.  I thought I was home free, until I saw the onc and he explained TN/grade 3.

    I've had 4 rounds of TC and will start 33 rads this Mon.  I will be seeing my onc every 3 mos initially.  I had an ultrasound Thurs after my sim, because I have pain in my affected breast.  There's fluid there, but no explanation for the pain.

    I have no family history of bc.  I down-play this to my elderly mother, because my oldest sister died of brain cancer at the age of 48.  My own emotions about this are all over the map.  I've had medical issues my whole life, and I've been "spunky,"  and sometimes feel this is too much to handle.

  • thenewme
    thenewme Member Posts: 174
    edited May 2010
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    Diagnosed at 39 - never had a mammogram since I was too young (HA-look at the ages of us on this forum compared to the non-TNs.  Scary!)

    No family history and no known risk factors. 

    BRCA negative.  

    Surgeon found tangled, abnormal clump of lymph nodes, so took 9 but all were negative.

    Huge lump out of nowhere. Later found to have ki-67 of 100%.

    Double mastectomy, then 4 AC dose dense, and 3 Taxotere dose dense (supposed to have 4 but discontinued because of neuropathy).  28 rads completed almost a year ago.

    Currently have TEs and will have (finally!) exchange surgery this June or July.

    Still have my port (and will keep it forever, I think!) so I have port flushes monthly and blood work/tumor markers every 3 months.  PET scans every 6 months or possibly every year.

  • workmother
    workmother Member Posts: 13
    edited May 2010
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    Hello. Here is my current dilema. I don't know if I'm triple negative! Has anyone ever had their ER status be positive on their original biopsy and then negative on their pathology report after surgery?

    I am 47 - diagnosed 4/1/10 (some April Fools joke huh?). Lumpectomy 4/20. no node involvement. all clear margins.

    Original biopsy pathology report said ER was 50% (favorable), PR was 3% (borderline) and HER2-. I am BRCA negative. My pathogoloy report after surgery says ER negative. Surgeon is baffled. She will talk to oncologist and pathologist and I have to call her Wed. to see what they think.

    If I am indeed a triple negative, I could use some words of encouragement right about now. Triple negative seems like such a doomed diagnosis and I'm really scared. The recurrence rate in three years seems very high. And I'm trying to wrap my head around the idea of chemo. Don't know how I'll make it through that. Besides the physical toll it takes on the body, I think it will take a huge emotional toll on me too - just the entire social aspect of losing all my hair. And it seems like it doesn't come back for months and months after it's over.

    I had been feeling very positive and now I almost feel like I've been told I have cancer all over again. -Donna

  • Karen3
    Karen3 Member Posts: 37
    edited May 2010
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    Hi all,

    I was diagnosed just after my 46th birthday. They started me on chemo straightaway in September 2009 (neoadjuvant chemo). I was supposed to have 8 rounds of chemo, each round given after 3 weeks. I had 2  X cyclophosphamide and epirubicin 1 X taxol and 1 X Taxotere. My chemo was withdrawn half way through treatment (after 4 rounds) as my regular MRI scans showed the cancer was not responding. They had tried four different types of chemo to no avail. So lumpectomy on 4th Jan this year, followed by 15 rads and 5 booster rads. I will see the breast surgeon once a year after mammogram. As I am triple neg and didn't respond to chemo - my Oncologist wants to see me in a year too. I have had a BRCA test due to cancer on maternal side of family. I was BRCA negative BUT they did find a gene mutation of 'unknown significance' in the BRCA 1 test. So, I have been asked to take part in the BRCA 3 study in London UK. 

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    Well..eleven of us so far....so this means that YOU are not alone!...I'm sure there will be more..sorry to say...however..now that we have our group...let's start talking about what we do know...



    Fact..triple negative tends to occur in younger women...except there are a couple of older than 50 here but the majority are under 50. obviously mammos should be done much early than 40. Also tn seems to come out of no where and moves quickly. I had a clean mammo and found the lump myself 6 months later..at surgery time it was 1.8 centimeters...my doctors waited no time at all to take it out and wisk me into chemo...for that I was grateful..because one year ago I certainly didn't have a clue..I thought once it was out that it was GONE..wrong!



    I tend to look up studies on the internet when I have a freaking out moment and I found one that had some good news on it for TN's. The study said that although tn's reoccur earlier...the actual reoccurence rate is the same as our er-pr positive sisters....the median for reoccurence was 16 months...tumor size did not make much difference...nodes did make some differnence..but not that much...



    A couple of us are two years out...that is such GOOD NEWS...for us not so far along..



    I have a 6 month mammo on Tuesday..I have to admit that I'm freaking out about it..it is almost the same fear as when I had to have chemo. I have been feeling myself up so much I almost feel like a freak or something....



    Karen..have they tried adriamyicin on you? That is supposed to be on the best or is what you had basically the same thing? I am certainly am not a scientist and wouldn't have clue.



    Alot of us here seem to have the taxol/taxotere but the other chemos are different...interesting...







  • HairSprayMom
    HairSprayMom Member Posts: 6
    edited May 2010
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    I was DX at 37, 2 yrs 6 months ago! I had a 2.7 cm tumor in the chest wall. I had a bilateral modified radical MX followed by DD taxatere/cyto and A/C both 4 doses each. Started delayed recon 1 yr after my MX and I am still dealing with it. I have had a lot of problems with my incisions opening up! I hope the last surgery fixed it. So I make #12!

     XO,

    Regina

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    So...who will be #13? Maybe we should just skip #13 and go to #14...I'm superstitious that way!

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    And another over 2 years out! This is great!

  • thriceblessed
    thriceblessed Member Posts: 3
    edited May 2010
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    Great idea for a roll-call!  A Baker's dozen of us now.  DX June 09 at age 50.  Found lump myself while blow drying my hair and resting my arm against the wall. Neoadjavent chemo (A/CT) Jul-Oct, Nov left MX and AND and immediate reconstruction with all fills in Jan, Jan more chemo (Gemzar, Carbplatin), rads Feb-Mar 2010.  Will replace the implant with the first DIEP surgery this coming July and the 2nd in August.  Sharing today's success story:  Last treatment March 25, May 1 (yesterday) walked 26.2 miles to raise $ for Avon Walk for Breast Cancer proving I got cancer...but cancer didn't get 'Me'! (Walked the other 13.1 miles today)

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    Thriceblessed - good for you doing the walk.  I really like how you say "I got cancer....but cancer didn't get ME!" I find that very inspiring.

    Sherri 

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    You go thrice! Awesome news! I like your scripture from Isaiah too! I bet you are a little tired but feel darn good don't YOU?

  • Charliebird
    Charliebird Member Posts: 8
    edited May 2010
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    So glad to find this topic! .. .49 years old, tumor was found via my regular yearly mammogram in March, had surgery (lumpectomy--mass removed with clear margins) on 4/23, first appointment with oncologist on 5/4, anxious to get started with treatment (not that it's going to be fun)---just want to get to work to fight this thing as hard as I can.  I'm interested in what kinds of chemo. others are having---how many rounds, dose dense (not exactly sure what that means), etc.  Also, is there a typical amount of time to wait to begin treatment after surgery?  How many of you got 2nd opinions regarding treatment?  I am trying hard to learn what I can before going to my appointment, but it's a lot to learn (and often makes my stomach hurt!).  Thank you to all who take the time to post here . .  .

  • riley702
    riley702 Member Posts: 575
    edited May 2010
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    I found my tumor around my 49th birthday and waited two weeks to get up the nerve to call the doctor, because, seriously, I knew. It came out of nowhere. It went from marble-sized to about 4.5 cm within a month. I had FNA on an enlarged lymph node that was negative. No BRCA testing due to zero family history. I have a port I've had no trouble with (knock on wood).

    I'm in a clinical trial right at the halfway point. My first 4 cycles were Avastin every three weeks, Taxotere on weeks 1 and 2, and Xeloda pills (3000 mg day) for days 1-14. I would normally start a new cycle this Monday, but am having the week off for midway retesting (for the trial). Because my tumor has shrunk significantly, my onc. gave me the OK to take another week off for a preplanned vacation that I was going on anyway, but it's nice to have him on board!

    My last 4 cycles will be Avastin, Adriamycin & Cytoxan. Then I meet with the surgeon to see about lumpectomy vs mastectomy, poss. rads, etc.

  • Nordy
    Nordy Member Posts: 1,106
    edited May 2010
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    Well, I think it is time to chime in on this thread - if nothing else than to give some hope to everyone! I was dx'd stage 2B at 37, the day before my first baby turned 3 months. My treatment consisted of neoadjuvant chemo (chemo first) - 12 Taxol weekly, followed by 4 dose dense AC (every two weeks); R total mastectomy; 25 rads plus 5 boost rads. The next year my sister was diagnosed (triple positive - go figure) and I had tested negative for BRCA 1&2 - but with this dx, I opted for L mastectomy w/tissue expanders placed bilaterally. Had them in for 18 months because about 2 months into expansion I got pregnant! Gave birth to a perfectly healthy baby girl at 40; tissue expanders removed and not replaced w/implants secondary to expanders pushing through the skin of the radiated tissue. Expanders caused a concavity of my rib cage on that side as well. Got pregnant again, miscarried at 11 weeks :(   Figured I could live without breasts but just never felt "whole", soooo opted for LSGAP (also referred to as hip flap - a higher version of SGAP) for reconstruction this past August w/Dr. Sullivan in New Orleans... just had stage 2 (nipples and scar revisions) in March and love, love, love my reconstructed breasts. I also had davinci assisted hyst/bso (family history of uterine and breast cancer) in December (between my stage 1 and 2 of reconstruction). Yes, I am missing some parts and now some parts have been moved around - but I hit the 5 year mark on April 21 (knock wood) and I am here to tell you that it can be done. ((((hugs))))) to all of you just starting this journey. I am not going to say it is easy... or without worries - because that would just be untrue. But do not lose hope for the future.
  • njbhwgirl
    njbhwgirl Member Posts: 59
    edited May 2010
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    Read everyone's posts with so much interest..okay here is my speel

    I am 55 and diagnosed same age. Left breast showed calcifications and right breast radiologist claimed fatty tissue. First breast surgeon guaranteed me that the left side was DCIS and just lumpectomy with no rads and right side was just fatty tissue...she was so WRONG!!!!!

    went for 2nd opinion day before my surgery and this breast surgeon said with my heavy heavy family history of breast cancer (mom, 2 aunts, both sisters) we needed to do MRI of the right side.

    okay fast forward left side ended up being TN with one node involved, right side two seperate spots of lobular cancer.

    I had bilateral and still hurting from it. Treatment for left side is AC 4 rounds then 4 rounds of Taxol. After all is over I will be on Femara for right side...go figure two different types at one time.

    I get a mammo every year, tested for BRCA gene was negative..god bless the surgeon who made me get core biopsies on the right... I have sent a letter to first surgeon who misdiagnosed me suggesting that in the future she look more closely at women who have heavy bc in their family and try to be a little more aggressive in their procedures..

    Will be starting treatment May 12th and looking forward to it being all over and moving on.

    Anyone else starting chemo this month?

  • LILLY1955
    LILLY1955 Member Posts: 10
    edited May 2010
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    Diagnosed at age 53 after routine mammo.  Got "the letter" stating "extensive DCIS" in L breast on 08/08/08. Thought that was supposed to be a lucky day???  Saw BS on 08/13/08 and had stereotatic bx that same day.  2 days later they called with dx of TN BC Grade 3.  Didn't know if it was invasive at that time.  The next week had MRI of breast.  Insurance certified for L breast, but hospital did MRI of both by accident.  Am glad they did.  2 days later got the call that they found probable BC in R breast also.  Had Bil Mx on 08/27/08.  Turns out left breast had 7cm DCIS with micro invasion plus 2+ nodes with micro invasion, triple neg.  Right breast less than 1 cm area of DCIS with micro invasion, 0 nodes Grade 3. ER 93% PR 47% Her-.   Had 4 DD AC then 4 DD Taxol.  Am on Aromasin due to ER pos status of Right breast.  Had 33 rads to left breast with 5 boosts.  See my med onco every 6 months, BS every 6 months, rads onco every 6 months and primary care every 3 months.. No recon.  I am now 55 and about 21 months out from dx.  My drs are all very happy with my status.  Haven't had any scans, but will get a chest x-ray in June as part of my normal yearly exam.  Never felt any lumps nor could any of the doctors.  Even the path report states that no mass could be felt on the anterior or posterior of the breast specimen.  My mammo from the previous year didn't show anything.  Thing just grew to be enormous in one year!!! I had wonderful doctors and nurses and had no problems with chemo except loss of taste (and hair of course).  Rads made me a little tired at the last.  I will be one year out of rads on Cinco de Mayo and have had 6 hair cuts!!  My hair is just like it was before tx.  Unfortunately, I weigh about 6 lbs more than I did before dx.

  • Karen3
    Karen3 Member Posts: 37
    edited May 2010
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    Hi again - just to answer Titan's question.....I didn't have Adriamycin (known as doxorubicin in the UK). Although the first lot of chemo I had Cylophosphamide and Epirubicin is fairly similar to Adriamycin and is generally the first option for breast cancer patients in the UK. In the states, these chemos are known as Cytoxan and Ellence. When this didn't work, they switched me on to the taxanes (Taxol and Taxotere) - which 'normally' work well for triple negs - but not for me! Anyhow, I am recovering from my treatment and feeling fine so far. I have been stressed about the chemo not working but decided to just get on and enjoy life! Easier said than done sometimes though.

    Thanks for starting this thread Titan Smile.

  • skigrl
    skigrl Member Posts: 5
    edited May 2010
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    Here's my story: Dx at age 46 on Oct2nd 2008. Found the lump in my left breast during a shower, mentioned it to DH whom replied " it cant be anything you just had a mammo that came back fine"! SO i let it go for 5 months before i called Dr. I could feel it getting bigger during the summer....but thought maybe a cyst because of the clean mammo. Sigh!... Left side mast, 4 ac, 4 taxol,33 radiation, tissue expander, then silicone implant..Really bad neuropathy in feet. BRCA negative...YEAH!! have 3 month blood work upcoming on thursday. Always get nervous. Mammograms yearly. Just trying to get on with my life...after being very active until cancer, i have slowwwed down, my whole body hurts ...i feel like a 90 year old getting out of bed in the morn. Does anyone else have continuing body aches after treatment? Try to stay positive, i have young kids and cannot ever think of leaving them behind because of this horrible disease.

  • Shel
    Shel Member Posts: 1
    edited May 2010
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    Thanks for starting this thread, Titan.  I had posted in my November Chemo group, but not on any TN threads.

    I was 59 when I was diagnosed.  The nurse picked up something suspicious at my yearly mammogram.  That was August 2009.  From there it was all a whirlwind of additional mammos, bioposy, BS doctor's appointment.  Then I switched hospitals and basically started the process all over.  I am glad I switched, however, to a larger university-based cancer center. 

    As someone else mentioned earlier, I didn't have the BRAC test done because I have no family history of cancer and because of my "advanced age".  I have two daughters, though, so I still wonder about that.

    I had a lumpectomy in October, followed by DD AC and DD Taxol, ending in mid-February 2010.  Then I had 23 regular radiation treatments followed by 7 boosts.  I finished all that up about 10 days ago. 

    For ongoing care, I rotate between seeing my medical onc and rad onc every three months for 2 years.  I see the BS once more but I think then she falls out of the picture.  They follow the standard of care where no scans or tests are done unless there are symptoms.

    I am beginning to feel more like my old self.  I can tell just walking the dogs and other minor chores are getting easier again.  I worked throughout, so some nights this winter I would just make sure everyone had dinner and then fall on the couch for the rest of the night. 

    Just waiting to get some more hair back.  I have a big family wedding in July and I hope to have halfway decent looking hair by then.

    Take care, everyone.

  • scooter-12
    scooter-12 Member Posts: 26,606
    edited May 2010
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    I was diagnosed at 55.  I had a lumpectomy and several weeks later a bilateral mastectomy.  No reconstruction.  My treatment plan was Epirubicin and Cytoxan X4, Taxotere X3 every 3 wks.  I see my BS every 6 mos., my onc every 4 mos., scans every 10 to 12 mos., sooner if symptoms are present.  My scans have been clear.  Yea!!!!     

    I found the 3.6 cm. lump myself 9 mos. after my last mammogram.  Never misssed a mamo.

  • mhm123151
    mhm123151 Member Posts: 11
    edited May 2010
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    Found lump at age 55.  Mastectomy, DD AC and DD Taxol.

    Was going to onc for blood work every 3 months and check-up, finally graduated to every 6 months. Does scans if I have a problem or if the bloodwork is out of whack. Never saw BS again as we moved from Florida to Nebraska.  Mammo annually.  Reconstruction completed!  See PS annually.

    Does your onc do the tumor marker test?

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    Hi everyone!

    I was 36 at diagnosis (Christmas 2008).  I found my lump (1.4cm) when in the bath on Christmas-day.  I had a unilateral mx + SNB in Jan of 09.  At path, they found another DCIS tumor, not associated with the 1st tumor. Frown  The SNB was neg. Smile However, he took a bunch of nodes because they were big.  I was still nursing so that was why and all nodes were neg. Started chemo 2/09.  I had AC X4 (every 2 weeks), 12 T (every week), and avastin (every 3 weeks).  I ended the taxol in July and continued avastin in to sept.  I had a prophy of the other boob 11/09.  I haven't had recon (yet)... still debating. I'm on the bisphosphonate trial and get clodronate.  I'm having an oorph 5/31/10.  (Mainly because I'm post-menopausal and frightened of ovarian cancer... I am BRAC neg, thankfully.)

    I see my once every 12 weeks for TM, PET, and brain MRI.  I see my BS every 6 mos.

    I guess that's it!

    xxoo

  • gillyone
    gillyone Member Posts: 495
    edited May 2010
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    Hi - diagnosed at age 55 in June 2009. Found lump myself after all clear check up 6 months earlier. Lumpectomy followed by 4 DD AC then 4 DD Taxol, then 32 rads, including 6 boosts. Now I see the med onc every three months but noone else. No routine scans, will only do them if symptoms present. See family doctor for physical, CBE and pap once a year and yearly mammos.

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    We are up to 24! I think once we get going we are going to have alot to talk about! I'm still waiting for Heidi to sign up..She is in the hospital right now but I think she will be kicked out soon...hopefully she is driving the doctors and nurses crazy and they will boot her out soon...hopefully tomorrow..