second breast cancer

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  • hrf
    hrf Member Posts: 3,225
    edited November 2009

    I had IDC first time and then 3 1/2 years later, ILC on the other side. First time lumpectomy, second time BM. Had ovaries out first time. Did chemo and rads both times. I'm BRCA2+  I found the second time harder in so many ways, especially emotionally....and much more devastating physically.

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  • Neece
    Neece Member Posts: 270
    edited December 2009

    Goodness there are more 'two timers' than I would have imagined! It was encouraging and yet sobering to read all your stories. I had my first diagnosis in 2002 - DCIS - with a mastectomy of the right breast and no further treatment required. In July this year I was diagnosed with ILC, DCIS and LCIS in the left breast, resulting and another mastectomy and this time, chemo (I am 2/3 of the way through)

    I so understand the comments re how the second diagnosis is harder - at first I was pretty OK about it but as the chemo progressed and I began to feel sicker all the worries and 'what ifs?' start to flood in.

    I am considering the option of genetic counselling to see if there is something that has increased my liklihood of getting bc twice - I also am getting worried now about ovarian cancer risks.

    Oh dear the list of worries and concerns seems endless once you have had bc!

    Neece

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  • Cindytree
    Cindytree Member Posts: 10
    edited December 2009

    Neece~ I did the genetic counseling and decided to take the test. I will be hearing in about two weeks for the results. Maybe it will help me with deciding what to do. I had two lumpectomy earlier this year on the right side. The second dx is harder, in Nov I was dx in the left side. Not sure what to do whether to have a double mastectomy or have another lumpectomy. If the test comes back positive then there is no question. I am going to have my ovaries removed. I agree with your worries and concerns, I saw my breast care counselor last night and let everything go. Made me feel better.

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  • Kathy16
    Kathy16 Member Posts: 135
    edited December 2009

    I did the genetic counseling and am scheduled for the test tomorrow along with my pre-op for next week.  It's much more devastating emotionally 2nd time, I think. 

    The genetics is helpful b/c you might find out information you did not think was important.  I lost a brother to a brain tumor.  Turns out the BRCA gene mutations also have double the risk of general population for one particular brain tumor (I wasn't sure if it was my brother's).  So, if I am +, his children (who are only about 10-15 years young than me) would need to be tested as well as my other living siblings.  It won't make a difference for me in my current treatment, but would alert me to having to have a hysterectomy in the future.  Hang in there everyone.  I'm so glad I found this board.  Thanks for listening.

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  • CharlestonGirl
    CharlestonGirl Member Posts: 161
    edited December 2009

    I got tagged also. June 2006 - Right breast - IDC Stage 1, clear sentinal node, multi-focal 9mm & 6mm tumors, ER+/PR+ Her2 -. Radiation + boost rads and Tamoxifen. Oncotyp Dx score of 9 - low risk of recurrance. Then BAM! July 2007 Endometrial cancer suspeted. No proof but docs think tamoxifen could be the culprit.  Pulled off that! Laproscopic hysterectomy & oopherectomy in Aug 2007 - yep, stage 1 endometrial cancer, no invasion of uterine wall. Roll to the next year. Funky mammogram, biopsy reveals benign sclerosing papilloma. August 2008 - lumpectomy to be sure nothing else there and removing papilloma. So now 2 numb breasts and nerves on edge. December 2008 MRI (told all looked ok). Jan 2009, received a call from my BS who has his own radiologist who wanted to do a biopsy on the right breast, something looked iffy. Another IDC Stage 1, ER+/PR+ Her2-. Mx recommended. PET/CT - no hot spots. Doc opted to not remove lymph nodes this time due to sentinal node gone and disrupted pathways. I requested bilateral mastectomy. Both the girls were numb and I was SICK of dealing with all of it. All that surgery. All those follow-ups. gad. BMx in March. No cancer in left breast but found multi-focal again in right breast plus DCIS and LCIS. LCIS indicated even higher risk of getting bilateral BC so the BMx was a smart move, turns out.

    Oh, and I opted for immediate SGAP reconstruction. Stage 2 was 3 weeks ago. The new girls are looking good and healing well.

    Most of the time I am fine. When I see my onc, though, I get a bit crazy & depressed. And MRIs are another reminder. Then my DH gets to peel me off the ceiling for a couple of days. 

    It helps that I'm an optimist, that's for sure! I'm grateful that everything was caught early. And that I have the best DH in the universe. And that I've found a number of silver linings in the various little cancer clouds.

    Here's to all of us growing old and staying healthy!!

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  • Myrajuc
    Myrajuc Member Posts: 117
    edited December 2009

    Hi,

    IDC Stage III-B in September 06, FIRST diagnosis.  Neo-adj AC and Taxol/Herceptin to shrink, didn't shrink.  10+/16.  Right Breast Mastectomy, Chemo Taxol/Herceptin, Radiation.  Then continued to Herceptin for a year (June 08).

    Symptomatic coughing October 08, confirmed Stage IV Mets to Lungs and Rib (bones) February 09. Was on Oxygen for 3 months, fluid drain in lungs.  Navelbine, Herceptin and Zometa.  Stopped Navelbine September 09 (take a break, bone pains).  Continued Herceptin and Zometa.

    Early November (a month ago) lump in left breast.  Hard and big, around the nipple.  Similar as right breast.  Confirmed 2 lumps and IDC.  ER/PR-, same as previous right IDC.  Waiting for Her2 status.  Just 3 years after, on the left breast.  I wish I had more years apart, at least.

    IF Her2+, then it's a recurrence. 

    IF Her2-, then it's a new cancer.  Then mets to lungs and rib could be from the new cancer?  Should consider Lapatnib (who here had/has Lapatnib?  I haven't had time to research).

    Either/or would continue with chemo.  Question is, what chemo combo?  And continue with Herceptin?  Of course Zometa.  But anything else for the bone?

    Had MRI for back, diagnose is not mets, but arthritis, or spindylosis.  I'm 40 right now (was diagnosed at 37).  Will need to schedule with ortho for treatment (radiation? therapy? just Zometa?).

    Surgeon not sure to do SNB.  What for, he said? I will be treated with systemic chemotherapy anyway.  I want to know!  So he will do an SNB.  My Left Breast Mastectomy is tomorrow.  Question is, if SNB is positive, do we remove the lymph nodes?  I no longer have lymph nodes on the right from the previous mastectomy?  Radiate or just trust chemo should work?

    Need to know your input, please!  I will check back after I get released from surgery.

    Thanks!

    Diagnosis: 9/14/2006, IDC, 6cm+, Stage IV, Grade 3, 10/16 nodes, mets, ER-/PR-, HER2+
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  • Kathy16
    Kathy16 Member Posts: 135
    edited December 2009

    Myra - I am so very sorry.  Those of us on this forum know what it's like to get the jolt of a second primary, but can't ever say I know how you feel b/c as far as I know neither of mine have spread to distant sites.

    I don't have experience or information with advice on all of the drugs for the mets and maybe the Stage IV forum would help with that.  I do know someone with mets for 5 years - liver lung and bone - who is going to a doc at Rena Rowan (University of Penn Cancer Center) who is doing great.  But, you asked about the SNB and whether to take lymph on the new cancer and I can share what happened to me - I had surgery a couple of weeks ago.

    My first one last spring was a little bigger and IDC (2 cm - can't seem to post both below on my signature, so new signature is most recent).  Second one was found by accident after a reduction and lift, so it was tiny.  Breast surgeon was content to try to map SNB only and if clean only take it, BUT ONCOLOGIST SAID ABSOLUTELY NO.  Now, this is probably b/c my second one was lobular and it had evaded mammograms, ultrasounds and MRI.  This lobular stuff was hiding in plain site from every screening tool.  So, my onc was not going for the SNB only.  His compromise with my surgeon was that IF SNB was clean, my surgeon would only take ONE LEVEL OF NODES.  (like that makes a difference in moving your arm after).  At any rate, I agree with my onc, and I'm grateful he is careful.  After they took the one level of nodes (which were neg.) my surgeon and oncs were still not satisfied and told me, "yeah, they're negative, but we are doing special staining b/c this stuff hides - so we'll know for sure tomorrow if nodes are really neg."  Thankfully the second staining was also negative and now I'm waiting on oncotype b/c I'm also in my 40s and may have to have yet another round of chemo if oncotype if high.  Another cyber friend I've been corresponding with (whose situation almost identical to mine) had a surgeon who said yes, they would just try to map SNB and not take others, so maybe she will post.  But, as I said, I believe my docs conservatism had to do with the fact that no scans were picking up my secondary one and they were really worried about it evading them.

    I am not HER2+ and as far as I know from scans I've had I'm not stage IV, so I would never pretend to understand how you feel.  I just offer up what my docs decided regarding the SNB and whether to take more nodes, even if SNB was clear.  I think many of us do understand the devastation of being relatively young and losing both breasts, though.  My prayers and thoughts are with you as you face more surgery and treatment - please post when you feel up to it during your recuperation. 

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  • Cheryl_in_SI
    Cheryl_in_SI Member Posts: 17
    edited December 2009

    Hi all

    This is my second time too.  First dx 4/08 DCIS 17 cm, Bilat Mx 8/08 (left prophylactic), no chemo, no rads, no tamoxifen.  Plenty of recon problems/surgeries (see my post in Exchange City thread). Nov 09 checkup - I pointed out a hard spot where drain had recently been.  BS said it felt like scar tissue but sampled anyway.  Came back cancerous.  Surgery 12/7 removed all lymph nodes. TCH chemo starts 1/7.  I don't know if it's arecurrence or a new cancer.  I wonder how it can be a recurrence if 1) there's no longer any breast tissue for it to recur in, and 2) it was DCIS before and now it is invasive, so to me, those can't be the same.  Pathology said all nodes were replaced with cancer and it went into surrounding adipose tissue, but PET 12/16 said no mets

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  • lwd
    lwd Member Posts: 1,084
    edited March 2010

    Hi, Carolyn,

    I feel for you.  I've also had BC twice.  The second time 12 years later.  Now I'm in my second year of treatment.  I know what a shock it is.  I had clear mammograms for 12 years, then had some lung problems and a little lump on my sternum.  CT scan showed metastasis.  No tumors in the breast this time.  The onc thinks some cells escaped from my first BC, which was very small, no lymph node involvement, and grade 1.  I had lumpectomy and radiation.  This time I'm on Femara and Zometa, and after one year, I'm doing very well.  It is so hard to tell your family and friends that it's back.  I only told those I felt needed to know.  In some ways, it was easier to deal with the second time.  I was better informed and knew I could go through it all again since I had survived the first bout.  I know it isn't easy, but somehow we adjust.  Good luck to you.  Lane 

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  • phyl26749
    phyl26749 Member Posts: 8
    edited May 2010

    My first diagnosis was at age 42, 17 years ago!  At that time, I had a lumpectomy followed by a segmental mastectomy with axillary node dissection followed by 46 radiation treatments and 6 months of chemo (adriamycin, cytoxan and 5FU). I was a triple negative.  After a routine mammogram in October 2009, a secondary primary in the same breast (R) was discovered..luckily it was much smaller than the first one.  This one is also triple negative. I had a mastectomy Nov 30, followed by lattissimus dorsi tram flap (took six hours)(they moved the muscle, tissues and blood vessels from my back to construct my new right breast). I had major complications from the reconstruction, needed two blood transfusions and emergency surgery the next evening. Went home with three jackson pratt drains, two onco balls for pain relief.  One of the drains "fell out" the first weekend home and the onco balls were removed at home.  After a month of the jp drains, they finally were removed, a week later I developed severe swelling in my back & had to have another type drain reinserted in my back which stayed in for three weeks.  Finally was able to begin my chemotherapy of Taxatere, Decadron, Cytoxan and anti-nausea drugs in Feb--four cycles which just ended today. I did need to have the Neulasta injections 24 hours after each chemo for my white blood count to stay up.  It does cause extreme bone pain for a few days after each one, they tell me not everyone experiences this but I surely do.  Seventeen years ago, I was scared to death because I didn't know what to expect, so this time I was much more relaxed and less anxious. I will be seeing my oncologist every three months for about two years. I will see my reconstruction surgeon next week to see how soon he can complete my reconstruction and reduction of the left breast.  Best of luck to you.  Would love to hear from anyone else who had problems with the latissimus dorsi flap surgery.

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  • sgilbert
    sgilbert Member Posts: 5
    edited April 2010

    Can someone tell me what triple negative, rads, A/C mean?

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  • sgilbert
    sgilbert Member Posts: 5
    edited April 2010

    Can someone tell me what triple negative, rads, A/C and MED mean?

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  • Lindissima
    Lindissima Member Posts: 239
    edited April 2010

    Here's a lost of commonly used abbreviations with explanations:

    http://community.breastcancer.org/forum/62/topic/735716?page=25#post_1793620

    Did you mean to write  MED or  NED = no evidence of disease

    A/C= a type of chemotherapy

    rads=radiation therapy

    triple negative= tumor tested negative for Estrogen, progesterin, HER2

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  • jillincc
    jillincc Member Posts: 9
    edited May 2010

    Hi ladies,

    My second journey...much too soon after the 1st. 

    1st - Sept 09 - Inf. Mammary Ca, St 1 Gr 1 0/3 Nodes, ER+/PR+.  35 Rads

    2nd-April 10-IDC, ST 1 Gr 3 0/1 Nodes, Triple negative

    Met with oncologist on Friday.  He says I am  in a "Gray zone"  (and I don't think he meant my hair color).  If I was 5 yrs younger, he said he would highly recommend 4 rounds of T/C.  If 5 years older, he would probably tell me no to chemo.  Basically, its my decision.  Wants me to think it over this weekend and then let him know.  Have a heart condition going into this..that's my biggest concern.  Meet with radiation oncologist on Monday and will get his opinion.  Was anyone else given this gray zone description?   Really puzzled as to what to do?  Thanks everyone.

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