Where are the tri-negs!

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  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    i know many TN women with early-stage cancer who have had no recurrence after many years, and i hope to be one of them. so i say think positively and don't listen to people who are negative!

    after surgery, chemo, and radiation, i find that my docs all disagree about what to do re: followup. i am deferring to my UCSF medical oncologist, who is an expert in BC treatment and reseach, who recommends no PET scans unless a problem arises, but recommends bloodwork and tumor marker tests as follow-up every few months. 

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited June 2009

    ddlatt  Thank you for your post.  I was starting to feel anxious.  I was very early stage but grade 3.I keep hoping I'll make it past the 3 year mark and start to breathe a little easier.

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  • rinna40
    rinna40 Member Posts: 357
    edited June 2009

    ddlatt: What is a pet scan? Maybe we call them something different in Canada. I've had CAT scans, bone scans mamograms and ultrasounds. I'm a little worried about all the radiation, which is a possible cancer cause.

    Rinna 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    rinna,

    I shocked they have not been scanning your other breast.  You are right about fighting for yourself. Start early and the doctor's will know you mean business.  They will probably do mammo at six months.  You may want to poke around on clinicaltrial.gov to search early stage TN treatments. (I'm not saying to due at trial just to see what is going on.) This will show you how many trials have been on for years and have not closed due to not clear cut answers on data.  This will also show you the new trials.  Watch the date line and who is doing the trials.  You will find a progressive cancer center will treat you with these outside of trials.  All my treatment was  "off label": meaning they I would be treated with drugs that were not approved for this use.  IIt's pretty much what everyone else is using four years later.

    Being positive does not cure cancer.  Being proactive in your care and getting the best treatment known is fighting your disease. Knowledge is power.

    Flalady

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  • Rainenz
    Rainenz Member Posts: 93
    edited June 2009

    Rinna

    Regarding your question about lumpectomy I can tell you I had one 12 years ago and am still NED in that breast.  Had a new primary in other breast 3 yrs ago and had a Mastectomy due to poor margins.  I had node involvement both times and so far NED, so for me no difference between Lumpectomy and Mastectomy.

    As for post tx 1st time only had regular checks with onc and surgeon, with annual Mammogram.  Had my 1st CT and Bone Scans after my 2nd lumpectomy before my mast as if there had been progression I would not of had Mast.  Even now only have mammogram and occasional scan if I am having symptoms.

    Now due to being tested positive to BRCA1 am now looking into proph mast with bi lat reconstruction and removal of ovaries etc. 

    The good news is that I'm triple neg and 12+ years  since 1st Dx.Smile

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited June 2009

    Hey Luv2sing,

    Thanks for the info and support.  I was told by my onco that AC is having a lot of problems on the heart, so EC would be a better drug.  As to who Tax was given.... I just followed what the onco said, though I took couple of more opinions.  They were all the the same. So basically the 2 drugs r of the same general group and would probably do the same job.

     I hope u are coping well with yr tx too.

     Take care

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  • rinna40
    rinna40 Member Posts: 357
    edited June 2009

    Thank you ladies, for the info. I was actually supposed to be part of a trial for my chemo regimen, but the complications with my healing delayed my timeline and I was no longer eligable. I Love to hear stories from people 12 years out!!!!! I know I will be followed my MRI as I have dense breasts. Anyone who knows me knows I can be pushy. I think this diagnosis put me in a bit of shock, also I realize how ignorant I was. As I gain knowledge, I am becomming my usual pushy self. 

    Thanks for the tips about the trials - I'll take a look. I don't know the dif between what is available here in Canada and what you ladies get in the States.

    Rinna 

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  • wayover20
    wayover20 Member Posts: 445
    edited June 2009

    Check this out in case you haven't heard.  My onc may put me on this if things don't resolve the way we want.

    http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1116

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  • wayover20
    wayover20 Member Posts: 445
    edited June 2009

    Don't know why it didn't make a link.....so just copy to your browser.

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  • susied
    susied Member Posts: 5
    edited June 2009

    Hi Flalady,

    I am a triple negative that just finished treatment in May. I just found out I am BRCA2+, so now they recommend a double mastectomy and also have my ovaries removed. I am just trying to decide when. I'm tired and need a break. I talk to the surgeon next week.

     I begin taking Zometa via IV on July 1st (2009)

    Any one else taken this? Anyone else Triple neg and BRCA2+? What were your treatments?

    Susie

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    Hi susied,

    Your the first lady I meet is brac2 and TN.  I don't think it would hurt to delay surgery and let your body recoup. Just a few weeks will make a big difference in how you feel. It also rare Zometa is given to TN without mets. TN are less likely to have bone mets than hormone+.  Are you showing bone loss?  Your doctor is being aggressive.  I curious what your surgeon will say...let us know what you find out.

    Flalady

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  • susied
    susied Member Posts: 5
    edited June 2009

    Think I could wait till January for the mastectomy?

    The Zometa has been shown to have success a warding off recurrence. FDA has not approved it for this, but it is being used this way.

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  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    rinna, this is a PET scan:

    http://en.wikipedia.org/wiki/Positron_emission_tomography

    it's different from a CT/CAT scan because with a PET scan, a radioactive tracer isotope is injected into the body.

    re: zometa - my UCSF med onc strongly encouraged me to start Zometa after treatment and my tumor was TN, stage 1, grade 3, no node involvement. he said clinical trials have shown that it prevents recurrence up to 35%. he is in favor of very aggressive treatment for chest wall tumors like mine, plus my mother and grandmother both died of breast cancer that spread to the bone. i had declined Zometa because of the risk of ONJ.  my doc said that with the bilateral mastectomy, aggressive chemo (AC/T) and 35 tomotherapy radiation treatments, i have reduced my chances of recurrence to less than 5%, and the risk of ONJ is not worth it to me. 

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  • susied
    susied Member Posts: 5
    edited June 2009

    Since I had a lumpectomy and not a mastectomy yet, does that mean my recurrence % is greater?

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  • tibet
    tibet Member Posts: 545
    edited June 2009

    Ddlatt

    What is a chest wall tumor? Does it mean the tumor was close to the chest wall and does it mean it is more dangerous than other places?

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited June 2009

    how imporant is it to do the BRCA test.  My onco here has not yet recomanded to me.  What kind of findings does it give.  i am TN too. Is it imp for me to get this test done?

     Uma

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    Please explain it to me how you can reduce your recurrence down to 5%? Chemo have less than 20% chance of "controlling" your disease.  Zometa has not proven to work on TN in trials.  Chestwall disease that can not be removed from surgery very hard to treat and has a poor prognosis. Many of us long term TN ladies all have chest wall disease and have been on chemo for anywhere from two to four years. We all did ACT dose dense and had progression?

    Flalady

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  • VickiG
    VickiG Member Posts: 536
    edited June 2009

    I was about to ask the same question Flalady.  Speaking of chemo from 2-4 yrs, Friday will mark 2 yrs since my first chemo tx... I've lost track of how many I've had, but I've been on chemo constantly this whole time other than the 5 mos between my TAC when I was first dx'd until I was dx'd w/ mets.  I am supposed to have my 2nd Abraxane tomorrow but I'm pretty sure my hemoglobin is still too low... last wk it was 8.4 & I got an Aranesp shot, but it's been 5 days & if anything my shortness of breath is worse now than it was even then... I can't remember how long it takes for that to kick in.  Radiation was cancelled today, but that's fine w/ me because I had a brain scan this am & that was enough excitement for one day.  It's always something, isn't it?

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    Vicki,

    I know you are one of my chestwall buddies.  I sorry you are still having a hard time.  I'm with you...my arm is killing me again.  I will be stopping my trial after the 2nd one last week.  The heating is making my lymphedema sooo bad. I will have to find my next treatment option ASAP. The skin is also getting worse.  My tumor markers doubled..not good.  Girl we need a break! Four years of chest wall is enough!

    Flalady

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  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    all i know is what my UCSF med onc told me! and i trust him. he's a leading expert in breast cancer research and treatment. i realize docs  can bandy percentages around and we hang onto the ones we want to believe in. bottom line--i know we all have a 50% change of recurrence and a 50% chance of no recurrence. i was as aggressive as i could possibly be--bilateral mx, AC/T, 35 tomotherapy radiation treatments, i exercise an hour/day, i eat all organic plant-based diet. and we all know that reseach brings us new information all the time, especially with TN. so i wouldn't discount zometa or anything else, especially when it's being advocated by experts who are very much up to date with clinical trials and understand them in a way we are not qualified to. 

    Age 54. IDC. Stage 1, 1.2cm tumor 1 millimeter from chest wall. Had ultrasound, MRI, core-needle biopsy. Sentinel node biopsy (nodes clear) and double mastectomy 11/20/08, no reconstruction. AC/ Taxol, 35 tomotherapy radiation treatments. 

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    I was treated by three top clinics including MD Anderson (#1 cancer clinic in the world). VickiG was treated by John Hopkins and consults with top TN oncologist also. We were treated by the some of the best and very aggressively. I've now been treated by seven different oncologist and they all agree that there is no set protocol of tx for TN at this time that has been seen to be more effective  than another. They all agree that Zometa does not show benefit for TN.  I guess I will go by what these seven doctor's recommend.  I glad they at least all agree

    Flalady

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  • tibet
    tibet Member Posts: 545
    edited June 2009

    pinkdove

    did you have anyone in your family had BC? I think usually they recommend if one does.

    In my case, no one ever had BC in my family but I insisted on the testing because I have a daughter. I hope my insurance pays for it but I don't know it yet. 

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  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    flalady, i didn't say it was a set protocol. i said it's what my UCSF expert recommended for ME. 

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited June 2009

    newalex

    my paternal granny had BC when she was 75 years of age.  whould that count?  And i too have a daughter.... what does BRCA test tell us?  Will it tell that my daughter will get it or not?

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  • tibet
    tibet Member Posts: 545
    edited June 2009

    pinkdove10

    I would think it won't count really since she had it of pretty old age. I would still do the test and if you do carry the gene, then you would take maybe ovarian out and etc. Your daughter maybe at higher risk so starts clear check up, etc.

    Talk to your doc about it. Do you live in big city or smaller? Are there good docs? 

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  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    pinkdove, this is a great overview of genetic testing and who should consider it and what it tells us:

    http://www.cancer.gov/cancertopics/factsheet/risk/brca

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  • Nanalinda
    Nanalinda Member Posts: 826
    edited June 2009

    Flalady:  I am sorry you are having to stop your trial.  I know you had a lot of hope in it.  I wish you the best of luck in finding a treatment that will work for you.  When you say that Zometa doesn't work for TN's is that for prevention only?  I am on Zometa, but I didn't start it until my scan showed mets to my spine.  I have been on it since Jan 09, but have not seen much improvement in my pain, but at least I don't have progression in my bone disease so far.  It is funny you should mention the chest wall thing being a TN trait.  I remember my Onco. mentioning that my tumor was close to the chest wall back when I was first dx'd, but I didn't know it was common with TN.  I learn something new from these boards all the time.

    Vicki:  I am sorry you have not had luck with chemo.  I hope you find something soon.  Are you receiving chemo and rads at the same time?  If you are, you must be really wiped out.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    Nanalinda

    Yes, Zometa as prevention is not showing the same results as hormone+. I hope it stops progression for you. A lot of TN's find their bc high on the chest wall barely in the breast...another strange thing some of us have. We also have a higher cases of blood clots. I've had one and Vicki is dealing with one right now.

    My buddy Vicki has lung, skin mets and getting rads in the groin area for a very painful node in this area. She just started taking Abraxene at the same time.  She also had to have her brain zapped a few months ago for a met.  This lady is a fighter.

    I hope you find relief for your own pain.

    Flalady

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited July 2009

    Thanks newalex, ddlatt.

     yes i do live in abig city- Mumbai. its got very good docs including oncos.  

    my daughter is just 9, so i guess she is still young to be getting any test done.  what would be a good age for her to get test done? 

    also is there anything anybody can think which would help prevent cancer in  my 9 year old daughter in the future.

    Uma

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  • Sheilaps
    Sheilaps Member Posts: 4
    edited July 2009

    Hi.

    I am going to have a mammogram and an ultrasound tomorrow on a lump in my OTHER breast aka the non-cancerous one.     Has anyone ever heard of a recurrance such as this?  It presents in the same manner as the origional one in the other breast.  Boo.  Its real sore.

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