TRIPLE POSITIVE GROUP

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  • Jumpship
    Jumpship Member Posts: 305
    edited December 2015

    What about triple positives? Is there a point in time when you can breath easier and think the liklihood of it coming back is getting smaller? My MO just says 'you are lucky.' No number and no scans.

  • Gohan1983
    Gohan1983 Member Posts: 62
    edited December 2015

    Luminal B and A is able to recur even 15 years after diagnosis, but Luminal B shows a peak of recurence about 4 years from first diagnosis. So, slight majority (but unfortuantely not all) of relapses occur within 5 years, in opposite to the most indolent Luminal A tumors (many incidences of relapse occur after 7 or 8 years).

  • ashla
    ashla Member Posts: 1,581
    edited December 2015

    Thanks Gohan 1983:) Are you a doctor?

  • Gohan1983
    Gohan1983 Member Posts: 62
    edited December 2015

    Almost all members of my immediate family are doctors (grandma, grandpa, aunt and uncle) I don't but I want to be

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited December 2015

    I am getting very emotional. Today my chemo doc said I have a 20% chance of reoccurance. Do you count time from when you finish all treatment? Scary stuff. Love, Jean

  • Opt4Life
    Opt4Life Member Posts: 191
    edited December 2015

    Well, it looks like I will be joining this group after all. My pathology report on my latest MRI-guided biopsy was sent to another lab and that lab is reporting me at higher ER/PR numbers than was previously reported and that I am borderline HER2+ with a score of of 2+. It is now being sent for FISH. I don't think this changes my diagnosis in the short-term but may mean that Herceptin will be added to my AC + T infusion schedule.

  • fightergirl711
    fightergirl711 Member Posts: 300
    edited December 2015

    zjrosenthal I'm right there with you - I'm actually more scared of recurrence than the cancer I have NOW and the treatment I haven't even yet received. I'm sorry you are scared. It's not fair. My hope is that if (BIG IF) recurrence does happen (say 5, 10 years?) that the drugs and treatments will be that much better than they are now. I pray for strength, and comfort, and that some day I can stop thinking about cancer day and night. <hugs>

  • zjrosenthal
    zjrosenthal Member Posts: 2,026
    edited December 2015

    Fighter girl. I am going to do the best I can with prayer and God's help not to obsess, take one day at a time and just live my life. Love, Jean



  • Gohan1983
    Gohan1983 Member Posts: 62
    edited December 2015

    It's unusual when Mucinous Breast Cancer shows Luminal B (HER-2 positive) phenotype. Colloid Breast Carcinomas tend to be Luminal A-like (in fact, it's not exactly the same profile as typical Luminal A IDC or Invasive Cribriform and Tubular BC). But, I think your histologic subtype is a "good cancer"

  • fightergirl711
    fightergirl711 Member Posts: 300
    edited December 2015

    Gohan1983 - thanks for the vote of confidence - it is IDC with "mucinous features," so not entirely mucinous. But from what I've read this type also rarely spreads to lymph nodes, nor does it spread quickly, and that hasn't been the case either. I also didn't get clear margins during lumpectomy, so need more surgery. I'm more than ready to talk to the oncologists about it (tomorrow and next for second opinion.) Thanks!

  • Gohan1983
    Gohan1983 Member Posts: 62
    edited December 2015

    I'm sorry. I've thought about pure mucinous carcinoma, not mixed. Mucinous carcinoma sometims may be admixed with ductal or micropapillary component, then it may exhibits Luminal B-like or even HER-2 enriched profile. But I've found an oddity recently. One lady in our forum has pure mucinous carcinoma with HER-2 enriched profile, which it's extremely rare...

  • lago
    lago Member Posts: 17,186
    edited December 2015

    zjrosenthal that means you have an 80% of no recurrence. We are not much different. I have a 16% chance of recurrence in the next 10 years from diagnosis. I'm already 5+ years so I know it's lower now. Take it one day at a time. Don't assume you will recur. 80% is good. I know if I didn't do treatment other than surgery my recurrence rate was something like 60%! Glad I did treatment

    Fighter girl see what I wrote to zjrosenthal above

  • fightergirl711
    fightergirl711 Member Posts: 300
    edited December 2015

    No worries Gohan1983 - I have a mixed situation of IDC, DCIS and IDC with mucinous features. During the initial biopsy (before lumpectomy) the surgeon thought it was a lot more mucinous, and also talked about the rarity of it having a HER2 profile (and how unusual it is at my age, I'm 44.) Anyway, hoping that the mucinous features offer some advantage, but it seems a lot more aggressive than one purely mucinous in nature. Scanning the path report there are cribriform features as well - something else to ask tomorrow. I'm just ready to get out of this cancer purgatory and do something, I've had enough waiting around these last two weeks!

    And thank you lago!

  • Opt4Life
    Opt4Life Member Posts: 191
    edited December 2015

    Fightergirl, I also have mixed mucinous (70% mucinous and 30% regular old IDC) with some DCIS with cribiform features. When they first thought it was pure mucinous, I was going to do surgery and radiation alone. But then when my lymph node tested positive with mixed mucinous and a second biopsy of the lump confirmed it, my BS recommended chemo, surgery, and then radiation. I was told it requires a more aggressive treatment but is still treatable.

    Zjrosenthal, as Lago says you have an 80% chance of no recurrence. Pretty darn good if you ask me.

  • virginia123
    virginia123 Member Posts: 21
    edited December 2015

    Did anyone here get a MammaPrint? My HER2 came back equivocal on both the IHC and the FISH. My doctor said he may rerun the test after surgery using a larger sample, but that we can probably just rely on the MammaPrint to determine treatment plan. This looks to be the newer generation test to replace Oncotype, hope my insurance will cover it.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2015

    Virginia - I had a Mammaprint on my biopsy sample five years ago - my BS is partnered in a study with Agendia.  The test looks at a larger number of genes than Oncotype does - but it is not used as often.  It is available for non ER+ patients and Her2+ patients, which makes it a useful test, but seems to be an apples/oranges comparison to Oncotype - which test is used seems somewhat dependent on physician preference, receptor/Her2 status, etc.  It is sometimes used when an intermediate result occurs with Oncotype as a tiebreaker of sorts for determination of chemo benefit.  I believe that Agendia will contact you if your insurance will not cover it (mine did not, but that was a while ago), they have some programs to help out.  Also, if your insurance does not cover all of the test I believe Agendia will accept whatever they will pay if you ask them for an Assignment of Benefits form, fill it out, and fax it back.

  • fightergirl711
    fightergirl711 Member Posts: 300
    edited December 2015

    Opt4Life yeah the mucinous diagnosis is why I originally opted for lumpectomy / chemo / radiation, but lumpectomy revealed a lot more info. I'll likely start chemo in the next weeks and need revisit the surgery decision. Then likely radiation and endocrine therapy. Thanks for responding - I thought I was one of the unusual ones.

  • ashla
    ashla Member Posts: 1,581
    edited December 2015

    Virginia123

    I had IHC , FISH and Mammaprint 4 years ago. The Mammaprint was done additionally( as well as for confirmation) because I was/am enrolled in Agendia's ( Mammaprint parent co) NBRST clinical trial.

    It was not covered by my insurance company but I was notified that all costs were absorbed by Agendia.

    The trial is in the last year of a 5 year course. Curious if they've learned anything valuable

  • Jerseygirl927
    Jerseygirl927 Member Posts: 438
    edited December 2015

    hi all, I went with bmx because I was afraid of reoccurrence, but we know that is not always correct. I am close to 65, have had my children and these puppies were larger than life. So bye bye. No reconstruction, I can be any size I want if I choose to dress up! On that note, I am still having issues with a seroma that won't quit. It's been drained 5 x's and the last one mostly bloody keeps returning. So do not have drains taken out too soon, even though they can't give me a reason it keeps filling other than I am doing too much with that arm. And it's not the cancer side. It was an easy decision for me.

    One other note, there are 2 jersey girls on here, so as not to confuse us, I will go by Maryann . I was reading posts and couldn't figure out why that answer was given???

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2015

    Ugh, about the seroma, Maryann. I had a nasty seroma after my lumpectomy, but only needed to drain it once. Hope it resolves itself soon!

  • Jumpship
    Jumpship Member Posts: 305
    edited December 2015

    I'd love some help understanding my radiology report. It said " one fdg-avid left axillary lymph." But when 4 sentinels were removed the oncologist said he found no cancer. What does that mean? Thanks

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited December 2015

    It means that the tracer FDG they use for PET scans (fluorodeoxyglucose) is found in a lymph node. From what I've read this can happen in any cell that is irritated. It means that the cell is using a bit more glucose than normal. That's why doctors are needed to differentiate between tumors sucking up the glucose and other reasons the cell is taking up more sugar. Since our Dr said no cancer he must have his reason to know it is not tumor motivated.

    I hope that helps.

  • Jumpship
    Jumpship Member Posts: 305
    edited December 2015

    Thanks Moon. I'll sleep better tonight.

  • edwsmom
    edwsmom Member Posts: 346
    edited January 2016

    HI ladies,

    I'm looking for some input. I just finished my last round of TCHP. My cancer was found in a single lymph node and no primary site was ever found (despite PET and MRI scans). So I have an unidentified primary. I also tested positive for the BRIP1 gene variant, which they know very little about, but I do have family history so there's got to be something genetic going on.

    They set a surgery date for me for January 28th. I still need to talk to the BS and PS about what they are recommending. Here's what they are telling me they want to do. I am electing to do bilateral mastectomies, I need an axillary dissection and at the end of it all I want to be a C cup (I'm currently a DDD).

    They are recommending that I need 3 surgeries to start:

    Jan 28 - axillary dissection and a reduction surgery. Then 12 weeks later (April) they will do the bilateral mastectomies with TE. Then 12 weeks later (July) they will put in the implants. Then I will have radiation in October - which seems like a LONG time away. The PA in my oncologist's office didn't think it was such a good idea to wait that long to do radiation. This whole process doesn't count putting new nipples on or that final stuff.

    One problem with this process for me is that I work full time and have a toddler. I don't understand why this needs to be broken into 3 surgeries. Why can't we combine surgery 1 and 2 to cut down on the time I'm off my feet?

    What do you all think?

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited January 2016

    wondering if some of you lovely ladies have experienced side effects from herceptin only treatment beyond the first dose. I have had no issues until this week. It started with being really itchy, everywhere. I assumed dry skin. Then a migraine kicked in which I have now had for three days and can't kick, coupled with nausea. Now I have a low grade fever but no cold and chills chills chills...what gives? I looked it up and they are all possible side effects, but have never happened before. :-(

  • Jumpship
    Jumpship Member Posts: 305
    edited January 2016

    My Herceptin only treatments were different. I finally had them run it over 90 minutes and that helped a lot.

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited January 2016

    tresjolie, CALL your doctor.

    Edwsmom, I have no idea why they need to do a reduction first. But do note that it is only a suggestion. You can certainly tell them your wishes and needs and it up to them to help you do what needs to be done. At the very least I'd ask why they want to do it that way. And if the do the reduction make sure the pathologist looks at whatever they remove. I'd hope it's standard but it's good to be sure. And I don't know the protocol for Rads. I'm sure someone will be by with that experience.

    Much love.


  • motherofmany
    motherofmany Member Posts: 45
    edited January 2016

    Tresjoli2

    I am having a lot of bloating in my upper abdomen with my Herceptin only infusion. I always thought it had been the steroids during chemo but now I realize Herceptin is the cause. Anyone else having bloating issue with Herceptin? If so had did you deal with it? It's very uncomfortable. My Muga came back at 69 from 70 so it doesn't seem to cause heart issues thus far. Thanks for listening.
  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited January 2016

    thanks moon...no more fever. Still a migraine. I'll probably call my pcp Monday. My onc will just tell me to do that anyway. I had just been wondering if it had happened to anyone else

  • amylsp
    amylsp Member Posts: 188
    edited January 2016

    Definitely call your Doctor. Seeing that you just started Tamoxifen in October, it could be a reaction to that as well.

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