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Calling all TNs

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  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    Alot of you had avastin...do you think that is something I should talk to the onc about? What are the side effects? What is it supposed to do for you???

  • thriceblessed
    thriceblessed Member Posts: 3
    edited May 2010
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    Charleybird,  To answer your questions:my onc and radiation onc had me wait 3-4 weeks after surgery before chemo...and again 3-4 weeks after chemo ended before radiation.  I'm a firm believer in 2nd opinions.  I went to a large cancer center getting my '2nd opinion' first - before I saw the local specialists.  I was happy when all the docs (onc, rad onc, surgeon, 2nd opinion) had the same recommendations for treatment.

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    Did anyone read the study "AACR: Combo May KO Triple-Negative Breast Cancer." It's posted here on BC.org? I noticed it mentions Avastin.

    http://www.breastcancer.org/treatment/targeted_therapies/new_research/20100421.jsp 

  • phyl26749
    phyl26749 Member Posts: 3
    edited May 2010
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    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.

  • phyl26749
    phyl26749 Member Posts: 3
    edited May 2010
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    Yes, I read the article and discussed it with my oncologist prior to chemo...they did not have much definitive info on it at that time. 

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,916
    edited May 2010
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    I have just been reading some of the postings about older women and breast cancer and have been looking to see if I could find someone with the same cancer from which I am in remission.

     I shall be 68 in September and was diagnosed with triple negative breast cancer in June 2005. (ER-,PR-,HER2-) I would like to hear from women of a similar age and with the same breast cancer. This cancer affects about 10% of women and they are usually much younger. After chemotherapy, surgery,and radiotherapy there is no preventative treatment in the United Kingdom.

  • tibet
    tibet Member Posts: 29
    edited May 2010
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    hi Phyl26749

    sorry to hear about your new dx. But it is probably new primiarly not a recurrence of the 17 yrs ago because after that long period, it is very rare to have a recurrence of a TN though.

    How big was your first dx? Did you have mastectomy 17 yrs ago?

  • Kelley41
    Kelley41 Member Posts: 41
    edited May 2010
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    Diagnosed 8 days after my 41st Birthday...Suspicious area found on mamo.  Had ultrasound and MRI and have dense tissue.  Nobody said anything about cancer...had suspicous area removed and turned out to be cancer.  Small tumor and no lymph node involvement but because TN, chemo was recommened because of my age.  Currently doing 4 round of TC every 3 weeks.  2nd round tomorrow.  Did have double mastecomy for piece of mind....

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    Kelley41 - I was wondering how you were doing.  Look at that...you're almost half way through TC! Hang in there....

    Sherri 

  • CarynRose
    CarynRose Member Posts: 5
    edited May 2010
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    I was dx'd 7 years ago at age 42.  Stage 2a, lumpectomy and SNB.  They didn't even call it triple negative breast cancer back then.  I had 4 years in remission (they told me I was 'cured') and then had a recurrence to the axillary lymph nodes and to my lungs -- STAGE 4.

    I'm about to turn 50 and am living life as fully and joyfully as I can, taking in every moment. I need to attend my nephew's Bar Mitzvah in ten years and I think that if we can manage my flare ups, we can make this disease chronic.  And after 'chronic', comes the cure. And I say that if they can find a cure/cause for triple negative cancer, they can come up with a cure for cancer in general.  JMHO.

     Love,

    Caryn

  • navymom
    navymom Member Posts: 842
    edited May 2010
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    here goes...I am 50 years old/ DX at 49.   Found my 2cm tumor on a yearly mammo.  had lumpectomy  then BMX with axillary node dissection on June 30, 09.  3 out of 17 nodes were positive.  6 rounds of TAC (taxotere/cytoxan/adriamycin)  No family history.  BRCA 1 & 2 negative.  Had exchange surgery on March 11 and trying to get back to living.  I am waiting for the "Your a Grandma" phone call anyday now.  My navyson is stationed in Jacksonville and his wife is due on May 7.  Something to live for and stay positive.  I consider myself blessed with having a great husband who has taken care of me and a wonderful circle of family and girlfriends who held me up and continue to do so when I am down. 

  • LNFletch
    LNFletch Member Posts: 12
    edited May 2010
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    I am 37 years old and was diagnosed September 2009. I found the lump myself two weeks after I visited the OBGYN for an annual exam two weeks before. When my doctor did the exam, there was nothing there, then bam, two weeks later I felt the lump. I didn't think much of it because I eat well, I worked out 5 days a week, I just finished breastfeeding my two year old the month before. For two weeks I hoped that the lump would go away, then I went to my PCP to get it examined.

    I went in for a mammogram, then ultrasound then had a biopsy. The day my husband had to go out of town for work, the surgeon called and said it was cancer. I was stage 2 at that time, but just before I started chemo, we found the lymph nodes near my collar bone were involved. I was then staged at 3c. I started Adriamycin/Cytoxan, every two weeks, in October and had such a great response, that I was able to have surgery in December. The tumor couldn't be felt anywhere. I had the One Step with Alloderm. I decided to have it early because I wanted to have the surgery at the Mayo Clinic and my husband's insurance was changing for the new year and the new insurance wouldn't have been accepted. Also, we had family in town to help and having two small children, I thought it would be best to have help when I couldn't lift. The breast surgeon found that less than 10% of the tumor remained.

    I recovered from the surgery pretty easily and then continued with Taxotere, again every two weeks. I had a PET scan before starting radiation and there was no cancer anywhere. I just finished with radiation last Friday.

    I'm happy to be finished with treatments on one hand, on the other hand, I loved chemo because I knew that it was working and it worked well. I'm starting to work out again, I'm taking vitamin D and low dose aspirin three times a week, but I was so healthy before, so I'm not sure what I need to do. My grandmother died of breast cancer at age 40. I tested negative for the BRCA gene. I think in the back of my mind I would always get it, but I never pictured myself dying from it. I just hope my instincts are right. 

  • angelsaboveus
    angelsaboveus Member Posts: 1
    edited May 2010
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    I had been having yearly mammos for the last 10 years ever since my sis passed from IBC. Just before my scheduled viist I found the lump. And the roller coaster began. Mammo /ultrasound Feb 14/08.... needle biopsy Feb.28.....results March 4 - 1.5cm IDC grade 3......April 2 left mx with sentinal and auxillary node dissection - 5 out of 12 nodes were positive and TN

    Started chemo May 8/08.....3 rounds of FEC with self administered shots of Neupogen as my blood  counts always went really low.  Tolerated the FEC quite well then moved onto 3 rounds of Taxotere. Didn't like that cocktail so much ! Finished up in the end of August then onto radiation.

    Did 16 rounds of higher dose radiation with 5 boosts mixed in. Was not doing recon so could do the higher dose.  

    So pretty much 08 was a right off but I am 2 years out and moving in the right direction. Here they don't do scans unless you have a issue that is ongoing. I do see my bs every 6 months as well as my general doc. So far everything looks good.   I did get a BRCA gene test last May and am still waiting for the results...this testing in Canada takes alot longer  than for others.

  • daffodil45
    daffodil45 Member Posts: 18
    edited May 2010
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    Hi...ok, let's see. was diagnosed at 44 in 2008 with 2 primary cancers in the same breast. TNC (stage2, grade3)and a ER+/PR+/Her 2-(stage 3, grade2). Bilateral mast (7/08), then full node dissection(8/08) because one node involved. Four rounds of TC. 4 Neulasta injections. No rads, no recon. I had a nasty enterococcal infection after the node dissection, so I really don't want to be cut into again. Tried tamox (couldn't tolerate it.... nausea and fever for 6 mo). Then had 3 Lupron shots (could not tolerate that either). Bone density showed osteopenia. My period came back after chemo, and then again after lupron. I have hemmoraged with the past 2 periods, pelvic ultrasounds showed many polyps and an unusually thick endometrium. I now have a really low rbc, hematocrit and ferritin level. D&C scheduled for May 19. The thing that bothers me most is that they never did a hormone analysis of the node, so I don't know which tumor was on the move!!!!! Also have never had a scan, except for original breast MRI. Thinking about asking for one, now that I am 2 years out.... oh, and I get a Zometa infusion every 6 months. Thanks for starting this thread!!!!!! Oh.... no family history, and BRCA neg.

  • wrsmith2x
    wrsmith2x Member Posts: 127
    edited May 2010
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    Diagnosed day before wedding anniversary - WEEEEE!.  Found during annual mammogram.  Had a lumpectomy and sentinel node biopsy then started chemo (4 rounds TC) and 33 rads.  Been fine ever since except, skigirl, it took me a year after everything to not feel like I was 90 years old!  I worry a bit about mets but mostly take this experience as a bump in the road of life.  I have two sayings that I love:  "Life is what happens while you are making other plans" and "Each place along the way is somewhere you had to be in order to be here."

    BTW, I was 44 at diagnosis and am 47 now.

  • riley702
    riley702 Member Posts: 575
    edited May 2010
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    "Each place along the way is somewhere you had to be in order to be here."

    I really like this one! Everything in our lives, even the things we didn't enjoy and/or regret, make us the people we are today.

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    Riley..I love your cat avatar...I'm a cat lover myself...I have two..a little man who is almost one and an "old girl" who is almost 10! They keep me busy...now my 2 kids will be home from school so my house will be a little crazy..it will take a little bit to get used too..but since last year at this time I had just started chemo this summer just has to be better! maybe I will actually remember it since last year is a little hazy! I had a mammo today and it was ALL CLEAR...I was so nervous..now maybe I can sleep tonight!



    We certainly do span the ages here don't we....maybe TN isn't really just for younger women after all....I feel that I'm young for cancer at age 50 but when I see the 30's and early 40's...well..it just isn't right. You "younger' ones are so very busy...with little ones and in the middle of your careers....



    No matter what age though, I think that we are very, very strong people.....we can get through this...

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    Titan - I'm so glad to hear your mammo was all clear.  What a relief for you.  BTW, I really like this thread and it's so nice to meet so many fellow TN sisters!!

    Sherri 

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    I have an appt. with the bs on friday and the onc in two weeks..after that I'm FREE for 3 months...yes!



    Glad that all of us TN'S can get together and share our experiences....Lots of information to absorb here..but is nice to know that we are not alone....

  • scooter-12
    scooter-12 Member Posts: 26,606
    edited May 2010
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    Titan...Your clear mamo is the best news...sleep well tonight.

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    great news Titan!

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011
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    Titan:  That is so good to hear.  I'm really glad you started this group, too.

  • Luah
    Luah Member Posts: 626
    edited May 2010
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    Hi ladies: I found a lump by accident while watching TV last August, age 52. Got in to see doc and have mammo right away. (Screening mammo from 9 months earlier had showed nothing.) Result was "not indicative of cancer" but followup with U/S recommended.  Took off for Cabarete, DR on a planned week's holiday with husband and 2 sons - kept the lump news from sons which was hard.  Somehow I knew it was cancer.  Next week, U/S shows 2 lumps, biopsy 2 days later comes back IDC (no hormone status until after surgery here). Clinically and on U/S no node involvement. Opted for lumpectomy, had a brilliant surgeon - love her!  Path came back trip neg, 1 close margin (which can't be improved), 1 node involved (micromets), LVI... and my world fell apart for a few weeks. Researched options for ALND versus radiation on nodes.  Surgeon got a quick cancellation so I jumped back into surgery.  Ten more nodes removed, all negative.

    In December, started 4 DD AC. Paused after that to get a cracked/infected tooth removed. Then on to 12 weekly taxol.  All chemo tolerated quite well.  I met my personal goal and skied this winter - in fact I skied throughout - 38 days total.  Very happy about that!  I'm also part of a clinical study looking at the impact of exercise on mental and physical well-being of women undergoing chemo for BC. I do 3 mile walks several times a week, also ellyptical machine, and weight training. 

    Tomorrow I meet with rad onc to plan next phase of treatment. Will probably start rads next week or the one after.

    Reading through these posts, I am amazed by how many say their tumours appeared out of nowhere.  The accepted wisdom in the medical community is that BC takes years to grow. Obviously not.  That perception needs to be changed!  

  • riley702
    riley702 Member Posts: 575
    edited May 2010
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    "Reading through these posts, I am amazed by how many say their tumours appeared out of nowhere.  The accepted wisdom in the medical community is that BC takes years to grow. Obviously not.  That perception needs to be changed!"

    I think the difference is the TN factor. I looked back through this thread, and of all the women who listed a Grade for their TN tumor, only one wasn't Grade 3!  These suckers do come out of nowhere and they're aggressive. And they don't respond to hormone-blocking therapies, obviously. When I first realized what TN was and what it meant, I have to admit I had a bit of a freak-out. I like better the stats that say that if we hit the 5 year mark, our overall survival rates overtake those who had hormone-receptor positive tumors.

    ETA: Thanks, Titan! I can't remember where I came across it originally. I have a big fat black cat, but he's too big to balance on the back of a chair!

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    Luah...I'm beginning to think that the tn lumps appear out of nowhere..I know mine did..one day I was fine..the next morning...a Sunday...I turned over in bed and it was just there....what a horrible, horrible feeling...I spent the day on the Internet..plus talking to my SIL who was going through BC at the time...she very calmly said have it checked out NOW...so I went to my doctor..they thought it was probably hormonal and to wait until I started my period..well I never started my period...they scheduled an mammo for me but I cancelled it because I hadn't had my period yet...when my period never came and the lump wasn't going anywhere I finally scheduled the mammo ultrasound..what a horrible day...the tech said "That is NOT A CYST...and then I sat in the darkened hallway waiting for them to schedule an appt. with the surgeon..they were asking me who I wanted to see and I just couldn't get my mind around it...I have to say that the finding of the lump and confirming that yes it was cancer was actually worse than the surgery and treatments..it was hell....trying to maintain a semblance of normalcy with my family,,,wondering it I was going to die tomorrow and miss my son's graduation from high school...it was just a nightmare.



    We have all been through this agony..and it really does suck..but hopefully...and I know now...that we can all get through this and maybe, hopefully, PLEASE come out of this feeling good and healthy....that is all we can hope for...and I think we can all can do it..we have each other HERE to talk about this with...it really does help..



    Reading everyone's stories...well..it just isn't right that we have to deal with this junk..but we are and we can do it.



    Hugs to you ALL!

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    And Riley...I like to research alot..and not sure about some studies..but I'm thinking that even within 2 years our risk goes down....one study I read was that the median recurrence was 16 months.



    And yeah that Grade 3 thing is scary...I guess that is why we need to get it out right away and do the hard core chemo to kill any freaking cell that may have gotten out...



    I also take flax oil and thistle seed..supposed to not let any cells stick together and form a tumor...not sure if it will work but I'm taking them anyway...at least there are no side effects!

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010
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    Just wanted to chime in...to go along with what Titan just said, someone on another thread posted graphs of the recurrence rates.  If I remember correctly after about 12 months the risk of recurrence starts to drop significantly.  

    In all honesty, I didn't realize TN was a negative thing.  I thought that I was lucky not to have to do hormone therapy.  I was grateful just to do chemo/rads and be done.

    Lorrie 

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    You know Morgan..TN may not be such a "bad" thing...though all cancer is bad....my co-worker who is a tn and 6 years out said her ONC told her just that.."it's not such a bad thing" I am holding on to that thought....!!! My own onc's look at me like I'm nuts when I start freaking out about tn with them....I guess I have to trust in them...and not believe in the media...who we all know seem to blow things way out of proportion anyway (sorry if any one works in media here)....

  • hope2
    hope2 Member Posts: 12
    edited May 2010
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    hi ladies,

    i first went with the lump the month before my 34th bday, got recomended to the breast clinic and Doc thought it was a fibrodema, lump disappeared after 4 mths, seen in breast clinic thought small dense breasts, get a referal back if lump reappeared, lump back a few days later, went to gp thought t was o.k. as had been seen in breast clinic, lump got bigger still thought it was o.k. just other meds for ivf that i was on causing it, got infection, by time go seen me it had calmed down, got another infection, got 2nd lump, back to gp again and told me it would prob go away, hormonal issues causing it (failed ivf), if still there in a few months come back. went back at just gone 35, doc very worried now as lump was 70 % of small breast and roxk hard like a plate had been put in there, gave immediate referral for breast clinic, got serious infection while waiting on appionment back to gp again, got appointment for thurs. had an abcess the size of an orange in the breast and was put on 11 antibiotics and 3 anti inflamories for 5 days and brought back, sent for u/s and mamo on same day, brought back for core biopsy, diagnosed as stage 3 grade 3 last april, 2 lumps both cancerous and nodes enlarged, was told if organs and bones were clear had a great chance, they came back fine, after operation 22 nodes removed, tumour was one large one over 8cm that had grown along chest wall, margins present but too small to be measured at chest wall, nodes clear, had modified radical mascetomy, followed by 4 x tc plus avastin and 33 rads and avastin every 3 weeks for 12 months only 2 left. asked stage again but they told me they dont know.

    so 12 months out and flying it, i do not know my follow up plan yet besides yearly mamogram on right breast and i dont have to see radiation oncoligist again unless i want to, may go see the breast surgeon soon about reconstruction options as have extra holes and extra long scar but she told me not to worry about them she will fill them in time. the other thing we all seem to have in common is painful tumours.

  • navymom
    navymom Member Posts: 842
    edited May 2010
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    I need to add my 2 cents about painful tumors...........My lump was found on my annual mammo.( I never felt it, neither did my gyne 3 weeks prior)   That same afternoon I had a walnut shaped, painful bump on my right breast.  I thought that I was maybe squeezed too tight during the mammo, even though I was never uncomfortable during the test and it felt just like all my previous mammos.  Well the "walnut" never went away and even got a bit discolored.  I started making phone calls to the mammo center and to my gyne(of course it was on a weekend by this time)  I did not have an infection but the lump never went down and stayed painful until it was removed 3 weeks later.  When it was decided that I needed to see a BS, her office couldn't get me in for another 6 weeks.  I had already had a US and looked at the pictures....My gut told me that it was BC........so I pulled the "pain" card and was in her office the next week. 

    I believe that the squeezing of the mammo got my tumor angry and it took off.  It grew 0.3 cm in just 3 weeks. 

    Navy