TRIPLE POSITIVE GROUP

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Comments

  • elainetherese
    elainetherese Member Posts: 1,635

    Hi emily_mh!

    Do you have implants? Women who receive implants are more likely to get implants to keep an eye on them. I just get mammos every year. I'm sure if my mammos showed anything suspicious, I'd get further scans.

  • emily_mh
    emily_mh Member Posts: 53

    Hi Elainetherese! Thanks for your message! I don't have implants, I had a lumpectomy - I think it might be time to stop the mri's. I kinda feel like I've been lost in the shuffle with my different doctors - hard to explain but anyway - thank you for your info!

    I should add to my signature -

    IDC July 2017, 5 cm., no nodes, Stage 2B, (originally diagnosed as 3A) Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy started July 2017 TCHP then Herceptin, one year

    Lumpectomy, Radiation, tamoxifen for 18 months then anastrozole for 6 years - still on it for another year.

  • kimmh012
    kimmh012 Member Posts: 85

    Emily, I was nearly the same in 2019 , 3c.. I had 3 Lumpectomies done. At my last ONC, followed by Surgeon appts in Feb 2024, I have them same day because I drive 2 hours.. I ask the same questions, No true answers, so I said I will be going to 1 time a year, enough contrast and radiation for me. I am aslo having side effects with anastrolzole with bones / teeth deteriorating so I had the Zometa infusion, in the meantime I have doubled my Vitamin D and Vitamin K (Mk7+).

    I have received more information from these boards than any doctors or nurses. I drink soursop tea and take 3 bitter apricot kernels daily with a lot of grounding. I detox with green walnut and wormwood 2x year.

    You know your body best, do what you need to do for you.

  • emily_mh
    emily_mh Member Posts: 53
    edited April 27

    kimmh012. yes! exactly, I asked my oncologist about the MRI's because I vaguely remember someone saying I should stop after 3 years possibly? and now it's been 6 - And she said ask surgeon but every time I go to surgeon's office I see a nurse and they just keep scheduling me for MRI's … I finally just made an appt to see surgeon in a few months but I am pretty sure I am going to stop. The contrast worries me and I find no research online about contrast except I know it doesn't leave your body. Anyway, I'm just going to stick with Mammograms. It's amazing how I've learned to advocate for myself and I've learned doctors don't really want to tell you what to do - even though they have the education and we want to be directed…

    thanks for your response!

  • kimmh012
    kimmh012 Member Posts: 85

    @emily_mh , there is some research out there... this was just on IG..

    "Consider this about 3D mammographies
    Yes, they are more sensitive and they do pick up on more stuff. However, they also give you 2-3x the amount of radiation in your breast tissue. Because the test is more sensitive, they have you come in more often. More mammographies means more cancer exposure. I'm not saying don't do a mammography. The repeat, the follow-up, you don't need to get all that radiation quite so often. lt's just not necessary.
    I do recommend a 3D sonogram. Advocate for yourself, ask your doctor for a 3D sonogram. This is an Instagram post for informational purposes only. Always consult your own healthcare provider. I
    cannot give individual medical advice.
    Dr. Loretta Friedman is a Non-Force Directional Technique Chiropractor in New York City who also specializes in metabolic detox and the lymphatic system. She sees patients in her office on 5th Avenue and also via telemedicine. More information
    on metabolic detox can be found via her website, synergyhealthassociates.com and her book, Lymph-Link (available on amazon). All links are in bio at
    @synergyhealthassociates

  • momx2
    momx2 Member Posts: 68

    Hello ladies,

    I’m back with reoccurrence same place.

    Has anyone here who started treatment in July 2013 had a reoccurrence?

  • moderators
    moderators Posts: 8,741

    @momx2, we're really sorry to hear about your reoccurrence. Please know that you're not alone, and there are people here who understand what you're going through. If you feel comfortable sharing more about your situation, we're all here to listen and offer any support we can. You might also find it helpful to read/post in the Just Diagnosed With a Recurrence or Metastasis topic, as it could provide additional support and resources specific to your situation.

    Best wishes,

    The Mods

  • momx2
    momx2 Member Posts: 68

    Thank you for your support

    I was originally part of this group in July if 2013

    I have a reoccurrence on the same area

    PETSCAN CLEAR

    Now just waiting for Oncotype to see what treatment is needed

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    emily_mh I am the ultimate person for "if someone will test it, I want it tested." I told my oncologist that if I could have a PET scan every three years, I would. I know there are risks with everything but my plastic surgeon has the ability to check my implants via a non dye injected mri every two years. It really doesn's look for breast cancer, but I get one religiously to make sure it all looks ok in there.

    I still see my oncologist once a year ( I could stop but it makes me paranoid). She is the only one that still does an breast exam. I know if I had any issues, she would order an mri with dye immediately.

    It's just reassuring to me.

    Can you tell I am not the poster child for living beyond breast cancer, lol? I have gotten better, but I still have zero problems seeing any docs for checking, followups, test, etc, and I am 13 years out

  • cowgirl13
    cowgirl13 Member Posts: 782

    Hi fluffqueen01. I remember you from years ago, I'm coming up on 15 years. Hard to believe it was that long ago, All is well here and I hope all is well with you.

    Elizabeth

  • wheatscapes
    wheatscapes Member Posts: 50

    Hey all, it’s been a minute since I posted. A lot has happened, but I’ll try to keep my post brief. I’m still cancer free, which is the most important thing. BUT I’m having a really hard time with my implants. I have Breast Implant Illness. I want to do a TDAP or LatFlap, but the place in NOLA is out of network with BCBS. I need to find a really skilled surgeon that’s in network with BCBS. Can anyone point me in the right direction?

  • morrigan2575
    morrigan2575 Member Posts: 806

    Hi Ladies

    Checking in after awhile. Wanted to see thoughts on AI length? I just hit the 4 year mark on Tamoxifen/AI and, waiting on results of BCI. My Oncologist is leaning towards 10 years, I'm handling Anestrazole well but, I worry about Osteoporosis.

  • elainetherese
    elainetherese Member Posts: 1,635

    Morrigan,

    I threw in the towel on my AI + Zoladex after eight years. My BCI was idiotic. It said I was at high risk of recurrence but that I was getting any benefit from hormonal therapy. Are you getting Prolia or a biophosphonate (e.g. Fosamax)? My bones deteriorated on Aromasin and Zoladex, so my oncologist put me on Prolia. After that, my bone density improved.

  • morrigan2575
    morrigan2575 Member Posts: 806

    Hi elainetherese

    I'm not getting anything for bones just yet. I had a bone density test in February and it said I had the start of osteopeania. Recommendation was exercise and to take calcium + vitamin D.

    My doctor wants to do a follow up test in February 2025 and if no change just monitor. If it gets worse he would prescribe something (assuming prolia).

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Well everytime something crops up, I come back here.

    Late last night, I was laying on my side and brushed across the implant. Immediately noticed two hard pea sized lumps under the skin right above and to the side of the nipple area. It's on the opposite side of my original cancer.

    Called the oncologist this morning as someplace to start. She got me right in tomorrow at 11 and I guess we we'll go from there. Then started the googling process.

    Getting ready to hunt up my old anti-anxiety meds. I'm going to need them.

  • morrigan2575
    morrigan2575 Member Posts: 806

    I know this is easier said then done but, try not to worry. Hopefully this is a non issue, just scar tissue or fat necrosis. Please let us know once you talk to ypur oncologist

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Thanks Morrigan,

    Saw the oncologist, and on Monday, I will be having an ultrasound with a likely biopsy at the same time. She said it was a little unusual to have 2 right there together, but felt like one of them felt unusual. So….

    And she hugged me at the end, I feel like that was a sure sign she thinks it is something.

    So, just need to get through the weekend without a nervous breakdown.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    It is fat necrosis. After lots of poking and prodding and the first mammogram that I have had since the mastectomy, along with the ultrasound, they confirmed that it is fat necrosis. Apparently, it shows clearly on mammos, but not so much on the ultrasound. On the ultrasound, it looked somewhat suspicious.

    I made her swear to me that is what it was. She emphasized that I could get more and should always feel free to have them checked out.

    Also said we just leave them, which I hate because they feel exactly like the sample we learned to feel for.

  • morrigan2575
    morrigan2575 Member Posts: 806

    Im glad it turned out to be fat necrosis. If you don't like it you can go see your PS i think this falls under his lead. Perhaps he can clear it out when you replace your implants?

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    I sent him an email to check that very thing. Given how worried everyone seemed to be, I know it is a small thing.

    Also sent the results to my breast surgeon just to make sure she agreed with everything.