Got Cancer? AGAIN????

Aerial

Thanks, inmate.  I really hate to wait but, these darn tests take time. (I guess...)

Oncotype DX is a fairly new test for (mostly) early stage, ER+ breast cancer.  It helps you and the doctor make an informed decision about whether or not you need chemotherapy.  They use a breast tissue sample, then they look at groups of genes and how active they are.

It all seems very complicated to me but, if I end up with a low score it means I won't need chemotherapy.  You can find more information on the Oncotype test on this site under the heading of "Breast Cancer Tests."

inmate4232010

Thanks Aerial.  I have TNBC so not sure if the Oncotype is for me but I will ask tomorrow.

rem9939

Hello Ladies, My name is Jane, and I also am a 2 time survivor, I was 35 when I was diagnosed the first time, it was invasive DC no nodes, receptor. neg. chemo and radiation and lumpectomy. I was so surprised that 16 years later this past Februray, diagnosed again in the same breast, this time I did BMX with Dirp Flap, no chemo or rads just hormone therapy. But I am a fighter, and we will wim this battle..

hrf

I found getting a second primary only 31/2 years after the first to be very difficult. I am having trouble moving forward this time

Aerial

hrf--Thoughts and prayers going out to you, hon.

rem--Sixteen years, huh?  This disease is SO arbitary!  Seems like you should have been home free. I know I was feeling that way after 8 years and it was a real smack to get a new tumor in the same breast..grrrrrr.

Even so, we will overcome this beast!

dogsandjogs

Sigh----I know how hard this is.  I got a second primary 28 YEARS after the first one. What a shock-

mom2mms

Hi ladies, i was diagnosed 12-26-09 Lt breast dcis stage 2 grade 2. I had a mastectomy 1-13-10

Had many complication had 6 surgeries. I did a reduction on the right got fat necrosis but about a month ago started some discomfort.. I went Monday to my oncologist he couldn't explain what we were feeling so he ordered a mammo and ultrasound. Mammo showed new calcifications that could be explained by the reduction but us found a mass underneath the fat necrosis. So they did a ultrasound guided core biopsy. I should get results today or tomorrow. Holding my breathe, not for me but to have to put Mt family through this again.

I take Enbrel for arthritis and psoriasis so my chances are high. I will let you guys know if I do belong here



Maria

hrf

Maria, here's hoping for b9 result

Hauntie

I'm so sorry you ladies are having to deal with BC again. I've been NED for 17 years, but have decided to have a PMX. Originally it was because I wanted symmetry, but it's become more and more about doing anything I can to prevent having to go through this again. I think that's why I checked out this forum. It can happen again, even 20+ years down the road. Something in my gut is telling me to do this now. I'm more convinced now, then ever, that it is the right decision. I know even the PMX isn't a guarantee I'll never be diagnosed again, but I know it will reduce my chances. My heart is with you all as you fight this battle again.

inmate4232010

maria....my thoughts are with you. 

hrf...the second time is much harder to take.  i am much more offended by the fact it came back, and so soon.  i just wonder if it came back so soon if it will ever go away!  i would like a couple of years free of treatment and doctors. 

epgnyc

I had my first bc in 2002 (TNBC l.7 cm. no nodes, Stage I, lumpectomy w/chemo & rads).  I'd been told that once you've passed 6 year mark you were home free from recurrence.  But in Feb. of 2011 I found out I had a new bc in EXACTLY the same spot on the left breast as the first (TNBC 4 cm. no nodes, Stage IIa).  The tumor was actually entwined with the scar tissue from the first surgery.  It's hard to imagine this is not the same bc as the first, although my oncologist says no, it's a new one.  Anyway, what a bummer.  This time I had a double mastectomy, 4 AC and 4 Taxol.  I'm just about to finish chemo this week (huge relief).  Strangely, I've dealt with bc better the 2nd time...less emotional and freaked out than I was the first time.  Not that I can say I'm happy to be going through it all over again.  But there you are.

Padiddle

Needing thoughts as I wait for onc to call.  First dx was in 2000.  Had right side mastectomy, chemo, radiation.  Nine years later (2009), metastatic disease to bone.  I've been in treatment for that for 20 months now.  Had ovaries out.  I take FEMARA and IV Zometa.  Just got a call from my PCP and I have IDC in the left breast, so I'm waiting for my onc to call to let me know what is next.  Any ideas, thoughts, experience....what should I expect?  Thanks for any thoughts while I wait for call from onc.  Jean

Aerial

Maria--thoughts and prayers to you, hon.  Let us know how you are doing.

epcgncy--Your experience seems similar to mine.  My lumpectomy was in 2003 then 8 years later, there's a new primary tumor in the same breast (not in the exact same place, though).  Gah!  It seems so unfair to be hit a second time with cancer (of any kind).  This time I was more angry but, knew there were ways to fight it (I would NOT die tomorrow, as I felt the first time).  I had a simple mastectomy, the mammogram caught it early and the surgery successfully removed all cancer cells.  I was very blessed to have a low Oncotype DX score so, chemo was not needed but I'll be taking Aromasin for five years.  

Padiddle-- I'm so sorry you are going through this again.  Cancer sucks.  I can only speak from my own experience but, I found this second cancer easier emotionally because I promised myself I would feel my feelings and express them honestly.  I didn't try to put on a strong front, I spoke honestly to friends, family and doctors.  I lazed around a lot after the surgery and tried to put myself first.  I was sad to lose a breast but, I went with "my gut" when it came to decisions that I could make and tried to accept everything else.  Still, I tried to let my feelings flow, not feel guilt or shame if I was mad, sad, or confused.  My prayers and thoughts are with you, Jean.  Let us know how you are doing.

Padiddle

Aerial:  Thanks for your thoughts.  I'm still waiting for a call from onc.  I haven't found any response from people who are stage IV and then get a secondary.  I keep waiting and wondering how this new one will change my current treatment, and if I'll need mastectomy or excision.  Just wanted to thank you for your input.  Jean

hrf

I know a woman on the boards who is stage IV and then got a new primary in her other breast. She had bmx and is now in the middle of rads. Her name is Lena.

LuvRVing

I had my first primary in June 2010.  Had a lumpectomy with SNB-everything clear, Stage 1.  Did Mammosite rads and finished at the beginning of August.  Tumor marker test in August - normal range.  Had a clear mammogram in December but a questionable ultrasound.  Should have trusted that Radiologist - she was right.  But we all thought she was seeing the hematomas from my initial biopsy from June.  My breast surgeon thought it was nothing.  MO thought it was nothing.  January tumor markers - on the rise.  February developed large seroma in the area of the biopsy hematomas and lumpectomy scars.  Biopsy in March confirmed "recurrence" or "leftovers"...who knows. Tumor Markers up even higher.  By the time I had a PET scan just before my 4/11 BMX, I had Stage 3b with 4 axillary nodes and 4 intermammary nodes. 

Now on DD AC-T (finished AC and had first T yesterday), looking "forward" to a complicated rads situation because I had Mammosite last year, and then finish reconstruction next year.  It's looking like a two year tour of duty!  Last week's tumor marker test - almost back to normal.  I'm calling that good progress!

Hugs to all,

Michelle

That thing grew like crazy - Ki67 of 90% with all the same traits as the initial lump - while everyone watched.  I'm lucky it didn't get to Stage IV.  And I was on Femara, too.  And taking metformin!

hrf

Just a question for you LuvRVing. If you are triple negative, why were you taking Femara? I thought that was only for ER+ tumours 

LuvRVing

HRF - my pathology reports and Oncotype testing showed ER to be slightly positive.  My MO said "positive is positive" so I dutifully agreed to take Femara.  That was after refusing chemo after my lumpectomy.  This time around, everyone agreed that this tumor behaved like a TN even though, again, there was the slightest ER+ showing in the pathology.

hrf

Thanks for the explanation. Did you do chemo the first time as well?

Padiddle

HRF:  Thanks for the info on Lena.  I will check her posts. 

LuvRVing:  I had mastectomy on the right at initial DX.  The left breast was not removed.

Onc called last night and feels it is okay to leave it and watch it via ultrasound.  He explained since we already know I have various other places with cancer and in-treatment, it is okay to watch this one.  I don't really understand this, but we will discuss it more at my next appointment Sept 1.  More waiting for me.  Jean

gkodad

I was initially diagnosed in 2002; 1.5 cm, primarily DCIS with invasive component, Stage 1, 0/3 nodes.  I did the lumpectomy, rads and tamoxifen for 3 years/aromisin for 2 years.  Clean mammo every year until this May...suspicious calcifications.  Biopsy revealed DCIS exact same spot as original tumor. Fortunately, it was all DCIS this time, so I've had a left mastectomy, and don't need anything else at the moment.  But it was much harder emotionally this time...I think I was so stunned the first time it didn't sink in until about half way through treatment.  But this time I knew what was ahead.

The oncologist says I'm part of a very rare group, but seems like there are a lot of us posting on this site! 

Paula66

In April 09 I was shocked to find out I had BC.  I was very luckey that is was small and that it was caught in time.  It was IDC er+ and grade 3.  I didnt have to have any further treatments and after MRI showed things were all clear I felt a burden had been lifted.  I was so very naive I took the info I was given and trusted what I was told.  I took steps to change some lifestyle habits that I had.  I did my mamograms like I was suppose to self exams like I always have done.  In October 2010 I found a lump in my other breast.  I went right away to the doctors for testing.  Come to find out it was BC again.  This time I wasnt as luckey.  I did however have a bouble BMX because for my own peace of mind, I didnt want to have to face this yet again.

Padiddle

Hello:  I met with my onc yesterday about this second breast cancer.  He advised having lumpectomy and set up an appointment with a surgeon next week.  They will compare the pathology with the pathology from the tumor that was removed from my neck in 2009 when I learned I had metastastic disease.  Hopefully, this will help him know whether to continue with my current treatment or, if needed, change treatment plan.  Best wishes for you all who are facing this situation.  I'll post again as more is learned.  Jean

Anonymous

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. 

Anonymous

How are you?

hrf

sandibj, you still have options for recon. Certainly DIEP is a good choice. Many women now are doing fat grafting with the Brava and are reporting excellent results, especially for those who have had rads. Have you had BRCA testing? 

mgm1953

Oh I can't believe how much you've all gone through. I'm just returning to Cancerland. I've been free since St 1  lumpectomy in 2005 and tamoxifen/femara 5 yrs. Mammo this Aug. and biopsy showed DCIS with suspicious focus. Shocked. My onc had told mea few mos. ago that he was more worried about my osteoporosis (from hormone therapy).

Mx is recommended. Trying to get DIEP thru my IMO. A secretary indicated (I hope she's an idiot) that I'd have to wait til the end of Nov.

 Has anyone had to wait this long? 3 mos from the bad mammo? I'm stressing.

AnnetteS

I believe my 2nd cancer was diagnosed before my 1st cancer. 

2008 I had "calcification" in right breast which put me on a six month mammo schedule.

2010 found cancer in my left breast.

Decided to do an MRI on right breast and found a different cancer hiding in the calcification.  This one had actually spread and I had a 4cm lymph node involvement. 

Now, after a bmx, chemo and five months of tamoxifen, I have a 'cyst' under the skin on left side.  They are sure it is nothing....but going to  aspirate and biopsy it anyway.

In a sense, I feel that my second cancer saved me since they could not find my first cancer. Hopefully I will not be on to my 3rd one.

Anonymous

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.

 

mgm1953

sandibj,

Please vent your heart out. As you say, the dread is the worst. Once you start treatment, you just soldier through.  I got me some Ativan for the worse days. Keep telling myself that if I'm bitter or stressed it just ruins whatever time i do have on this planet. You'll make it through, AGAIN.

xo

m.