Triple Positive in our 20s and 30s

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rhp268
rhp268 Member Posts: 24
edited January 2017 in Young With Breast Cancer

Hello, I am new to breast cancer.org and I looking to connect with women with the triple positive diagnostic profile who also face the added risks of being relatively young at the time of diagnosis.

I am 29 years old, diagnosed about a month and a half ago. I have ER+/PR+/HER2+, grade 3 IDC with a 2.3 cm primary tumor, a sub-centimeter satellite tumor, and one ~1 cm lymph node confirmed positive. My doctors have told me that I'm "somewhere between stage 2 and 3." Since they started chemo prior to surgery to halt additional spread, I may not ever know if there was additional lymph involvement that wasn't picked up by PET CT and I may not ever know my precise clinical staging prior to treatment. Will receive Adriamycin, Cyclophosphamide, Taxol, Pertuzumab, Herceptin, double mastectomy, possible radiation, and Tamoxifen for 10 years (hopefully).

Given my HER2+ status, I find that I can deal with the chemo, the hair loss, the double mastectomy, fingernails falling out, even the prospect of never having children (something I've badly wanted for my entire life). The hardest thing for me was when I dug beyond the information that my doctors readily shared with me to learn about HER2+ related risks in the next few years and how our youth is not necessarily on our side...

Anyone else digging deeper into similar issues?


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Comments

  • rhp268
    rhp268 Member Posts: 24
    edited June 2015

    And does anyone else happen to know anything about more advanced screening methods for follow-up?

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

    Hi!

    I'm a middle-aged triple positive (46 at diagnosis, now 47). You might have more luck on the general triple positive thread, which is pretty active. Good luck!

  • rhp268
    rhp268 Member Posts: 24
    edited July 2015

    I think the reason I was attempting to start a new thread was because the risks are even higher for women under 35. Was curious to see what women in this category had to say... I do appreciate your recommendation though and will check out the other group.

  • molly1976
    molly1976 Member Posts: 403
    edited July 2015

    I am 38, so a little older, but my doctor tells me my risk of recurrence is less than 5%. Everything I have heard from him (and other people who treat breast cancer) is that with the new targeted therapies (Herceptin, Perjeta, etc.), her2 positivity is a good thing. Those drugs have been a game changer. Google is really scary for Her2+, I know, but stay off it! Most of the stats you see there are old. The longer we have Herceptin, the better they're finding the results to be.

  • Ddsmomma
    Ddsmomma Member Posts: 5
    edited July 2015

    Hi- haven't logged on in a while so a little late responding. I was 35 when diagnosed with stage 3. I was breastfeeding my 3rd child at diagnosis. I have done all the Google research too and it's very scary. My close friend is a breast surgeon and told me to stop because treatment is improving so rapidly that the statistics are all behind. For the most part I stay positive but I still stress with every cough, head ache, etc. I think it's normal!

    Before starting tamoxifen ask your doctor about the study that came out in December that showed better results for young women with with ovarian suppression plus aromatase inhibitor. Hang in there- I have heard that eventually it will get to where you don't think of cancer daily

  • rose08
    rose08 Member Posts: 4
    edited August 2015

    I'm 30 years old and was diagnosed with triple positive IDC in June. My genetic testing for breast cancer is negative.  I am going through chemo first and then double mastectomy and reconstruction. I will stay on Herceptin for a full year. Hormonal therapy for 10 yrs. My oncologist ordered the following diagnostics to help with staging: CT of thorax, abdomen and pelvis; brain MRI; breast MRI, and bone scan.  Some of these tests were chosen due to my medical history of previous adrenal cancer. My understanding is that her2 + is more aggressive and more likely to return, but prognosis has greatly improved with drugs like herceptin and perjeta. And double mastectomy decreases chance of recurrence. I think that we are looking good for the long run if there is still no sign of cancer 5 yrs out. I would also like to hear from other young women with breast cancer.  I often feel uninformed. I don't know what to expect in the long run. I'm only on my second chemo treatment out of six. Surgery to take place afterward. 

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    hi rose I am also 30 on tchp and getting a double mastectomy we could be twins ;) are you planning to be on tamoxifen or doing oopherectomy or Lupron shots and al? I have decided on doing al but scared of the shots and a little scared of the permanent loss of my ovarie

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    Anyway I have to do multiple posts my phone gets locked up when I do long ones on here I will finish chemo tomorrow whoopee it hasn't been easy side effects are manageable but I was in hospital twice first time neutropenia neulesta takes care of that 2 time my stupid port got infected and I turned septic still recovering from that with Iv antibiotics I do at home 3 times a day with 2 kids at home ugh do you have children? Anyways my advise get the neulesta shot my wbc dropped to 0.7 without it and ask for a bag of fluids the next day helps a lot

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited August 2015

    I am going to do ovarian suppression with Lupron and tamoxifan when I finish with chemo. I was worried about long term bone loss with an AI.

    I would stick with the Lupron and see how you handle being in menopause before doing an ooph. Lupron can be reversed. The ooph is permanent.

    Hope it was OK to post here. I had JUST turned 40 when diagnosed and have small kids and get a lot of comfort here. Mostly I lurk :-)

  • rose08
    rose08 Member Posts: 4
    edited August 2015

    Stephmoen-

    I do not have kids. I can't imagine going through chemo and still having other people depending on you daily. It must be tough! I am glad to hear that your chemo is about over. My oncologist has said that I will be on both oral and injectable medications to suppress my ovaries, but I am not having them removed because my genetic testing was normal. I have only spoken with one other young person getting both medications and she said that hot flashes were pretty much the only negative side effect that she noticed. Will you or have you had surgery yet? What did your doctor say about radiation? The consensus among Drs I've spoken with is that I should not have radiation with my treatment. I think they felt that I may be at higher risk of developing a cancer from receiving radiation. I am having a double mastectomy after chemo. I am really anxious about it. I just feel like I have no idea what expectations to have.

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    having a hard time with rads they aay no but I have not had an SNB pre chemo my oncologist is convinced I'm stage 1 according to my pet scan but during mast I will have an SNB and I want them checked for dead cells if there were any I will insist on rads this article convinced me to push I'm also pushing for perjeta with herceptin rest of the yea

    http://www.eortc.org/news/irradiation-of-regional-nodes-in-stage-i-iii-breast-cancer-patients-affects-overall-survival/

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    the reason I want an oopherectomy is because the soft trials have proven to be better for premenapasual women I am going to do everything in my will power to stay here being I have an aggressive cancer in young and I just had a baby puts me in a scary group. I don't see myself going for shots I'm just gonna go all for it and deal with the side effects as they come I've dealt with so much already I'm sure I will be fine as long as I see my babies grow up

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    rose did you have an SNB done prior to chemo? That's what really decides on rads

  • nlg826
    nlg826 Member Posts: 5
    edited August 2015

    Hi everyone. Just noticed this thread, and I'm triple +, 29 years old. Just finished up with chemo (AC + Taxol). Starting radiation in a little more than a week, and will continue Herceptin and Perjeta for a year. I did not receive any treatment before surgery. Has anyone experienced any hair loss with Perjeta, or problems w/ growing back hair while on Perjeta (when not administered w/ regular chemo)?

    I also plan on doing ovarian suppression plus an AI. From what I understand, there's not a huge difference in Tamoxifen vs AI in Her2+ patients. Just going to try the AI and see how I fare on it.

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited August 2015

    my onc is recommending tamoxifen versus AI. She's also totally against me getting an ooph or my tubes tied for that matter. She said that the risk of blood clots on tamox was the same as the birth control pills. That AI has bone density issues and would be better for older women. She's also mentioned that they ovaries provided other benefits. She's contemplating only supressing my ovaries for two years and then seeing where we go from there. I am going to meet with my OB but I thought her perspective was interesting

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    yes the only thing that worried me is bone density I am contemplating the Lupron shod to begin for a little bit of it's going well I'm going all the way I want what will keep this away for good

  • rose08
    rose08 Member Posts: 4
    edited August 2015

    I am going through chemo before my sx. I have not had a lymph node biopsy. They will do that at the time of sx. My oncologist didn't offer perjeta, just herceptin, after chemo to finish the yr. Well, I'm also to complete hormone therapy. So, are your drs recommending both herceptin and perjeta after chemo?  I have to say that I haven't spent much time thinking about what happens after sx. I'm so worried about the mastectomy and rec

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    I am the one pushing for perjeta all year I have seen other women on the trip pod site and tchp site so j thought why not try my mo thinks if will be an overkill but I don't care rather do more than less we are hoping for pcR since my tumor has shrunk so much best thing to do is fake one step at a time I am finally doing research on surgery now that I'm done with chemo

  • nlg826
    nlg826 Member Posts: 5
    edited August 2015

    I think Perjeta is more commonly given before surgery (neo-adjuvant), but there's new guildelines in last year to show it can be helpful given after surgery. My onc has stated Perjeta could also be a "game changer," similar to what Herceptin was, so I would definitely push to get this along with Herceptin. They may tell you insurance won't approve, but usually it's fine once the onc speaks to them. Mine is approved for 6 months, and then insurance said they'll re-evaluate then, but most likely will approve for additional 6. I would 100% try and get Perjeta if you can, and fight to get it.

  • DSW1976
    DSW1976 Member Posts: 118
    edited August 2015

    MY onc said they are now figuring out that estrogen is storing in womens fat thats why even after they get ovaries removed it still.comes back.  I am tired of hearing people say how lucky we are to be her 2 positive.... Why? Because we get a medication for it? My onc sat me down when I was diagnosed.for 3 hours and told me everything I jad against me Age,her2,small size of tumor and fact it had already spread to my lymph nodes. He said my cancer had only been growing in me for 8 months as opposed to the 8-10 years we hear. I think they keep  telling everyone how lucky they are to be her 2 positive because they want us to believe it will work and I do. But they dont know yet. If im being harsh im sorry but im in this boat too and im scared and my onc s wife had breast cancer he is a straight shooter. 

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    I feel lucky that we have 2 new drugs targeted towards our cancer it's changing my dr said it was a bad diagnoses now it's one of the best to have..she told me triple negative is by fat the worst I say the more you have to fight it the better

  • DSW1976
    DSW1976 Member Posts: 118
    edited August 2015

    OH dont get me wrong by far tripple neg is the worst but us having her 2 which is a cancer accelerator and without it we would all around be better off.  Why do these Dr.s tell us all different things? Mine even changed treatment plan.based on new study that came out about estrogen being found in fat. Im so lost....

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    what is your new treatment plan? I was very upset finding out I was her 2 but what's harder for me to take is the fact I'm 30 and have a 1 year old apparently being diagnosed after close pregnancy has bad prognosis

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    I plan on doing oopherectomy with al because of the soft studies does your no believe in those studies?

  • DSW1976
    DSW1976 Member Posts: 118
    edited August 2015

    At this point I don't know but I know that removal of the O's is out w him so I am now going to get a second opinion next week and honestly probably switch onc.  I liked the fact he was a straight shooter like me but he was heartless and I get he has seen alot of us but I cried one time in all this mess and he suggested anti deppresants.  Thats a entire different subject but I will see what this lady says. But my other onc also was involved in studies. I dont know what to believe. He had a set plan from day one then it suddenly changed after his seminar reguarding this subject so I thought I would let you all know and he is part of cleveland cancer clinic. 

  • nlg826
    nlg826 Member Posts: 5
    edited August 2015

    I feel torn about it all too...it's like you absolutely know Her2+ is more aggressive and a far worse prognosis, but the docs keep saying being triple + is almost better now since there's medicine to target all three receptors. Some days I want to believe them, and others I think that they're just trying to be as positive as they can, and want to believe we will be ok.

    None of my docs have recommended removing ovaries or tubes. I've asked several times, and they all have said no. I think that's why they recommend Tamoxifen for ten years now (w/o ovary removal) because your chance of recurrence falls after the 10th year, and Tamoxifen will suppress the estrogen. I don't know what to think...I feel like it's all just a mess.

  • Musosgirl
    Musosgirl Member Posts: 387
    edited August 2015
    I am 34 and triple positive. I am doing tchp right now and trying to research my surgery options--lumpectomy vs. mastectomy and ovary removal. I have two kids and need to make the best educated decisions I can and yet feel so underinformed. My mom and her sisters didn't hit menopause till their 50's. Even 10 years on Tamoxifan may not suppress my system long/hard enough. But before that I need to get through the next year, 3 years, 5...
  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    miso girl I'm on the same boat as you I am 30 wih a 5 and 1 year old Finished up tchp a little over a week ago (feels so good to say that) met with my surgeon I am scheduled for a double mastectomy sept 21 I decided right away I wanted one the few added percentage points for lower reoccurance convinced me plus to be honest I am not attached to my boobs at all 2 kids really screwed them up! It's a big surgery.

  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    I also planning on doing oopherectomy with al after the soft studies I have seen too many young women on here go to stage 4 it's terrible for anyone to have this disease but even more unfair for young mothers I may try Lupron shots to be sure I can handle it but I'm in chemopause now not too bad worse part is vaginal dryness have to figure something out not being intimate with my husband will be a big issue

  • rhp268
    rhp268 Member Posts: 24
    edited August 2015

    DSW- I think the issue of the HER2+ status might be a bit simpler than you think. Prior to the FDA approval of herceptin, people with HER2+ BC did not have long to live (maybe a few years?) even if they had a double mastectomy and the best of available treatment. With the advent of Herceptin and now Perjeta, it is not necessarily a "good thing" to have HER2+ BC but these drugs have leveled the playing field and give us much more similar odds of survival as women who are not HER2+.

    Stephmoen- Why do you feel it is prognostically worse to have a BC diagnosis after pregnancy? I'd imagine it is a good thing you caught your cancer at such an early stage, especially given recent advances in treatment.

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