Is there any truth to this? Diagnosed under 40..

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MelissaAshley
MelissaAshley Member Posts: 15
edited September 2019 in Just Diagnosed

I was just diagnosed with IDC and I am 37 years old. I keep reading that cancer under 40 is much more aggressive and I have a higher chance of not surviving. Does anyone have any insight on this? Are there any specific questions I should talk to my dr aboutor things I should do differently?

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  • DorothyB
    DorothyB Member Posts: 305
    edited September 2019

    I think the biggest things that determine aggressiveness are grade, the characteristics ( ER positive or negative, HERC positive or negative, etc.), and whether it has spread to the lymph nodes yet. The grade and characteristics will be determined by tests done on the biopsy (and then verified after tumor is removed).

    Questions for doctor: what plan does he recommend? how big does he think it is? get all test results from him in writing (or write them down as he is telling you) including ER & PR status, HER2 status, grade, etc.

    Things you should do differently: I found some good info many different places, but things that have been shown to decrease chance of recurrence include keeping weight in healthy range, cardiac exercise (30 min moderate exercise 5x week minimum is my goal), eating a diet that is mostly (or heavily) plant based and includes lots of different fruits & veggies, etc.

  • hapa
    hapa Member Posts: 920
    edited September 2019

    Being young in and of itself doesn't make the your chances worse. But younger women are more likely to have more aggressive subtypes, bigger tumors, and spread to the lymph nodes. So as a group, younger women have worse prognosis than older ones. However, a younger and older woman with the same tumor characteristics have about the same prognosis. I hope this makes sense.

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited September 2019

    Melissa-

    Sorry you find yourself here. Yes, there’s a lot to learn. And yes, breast cancer in young women is often treated more aggressively. We have longer to give cancer time to come back unfortunately. To put it in perspective though, we all have exactly the same chance of not surviving, it’s just a matter of what we die from and when.

    If you’re unsure about your treatment plan, once you have one, get a second opinion, or a third. There are no clear cut answers I’ve found. Both my surgeon and my MO encouraged me to seek a second opinion in Boston because they were on the fence. Even the tumor board couldn’t agree.

    Be confident in your team and comfortable with your choices. You are the one who has to live with them. I opted for no chemo even though my MO was pushing for it. You should ask about the Oncotype test. My MO wouldn’t run it, but Dana Farber did. With a score of 14, I opted out.

    You could ask about a PET scan. It’s not usually done as standard practice. You should request a dexa scan for bone density if they plan on ovarian suppression, if you still have your ovaries. If you’re concerned about fertility, you should ask those questions sooner rather than later.

    You could ask under what circumstances they’d recommend radiation. A mastectomy is no guarantee you won’t need rads. A positive node got me rads.

    Once you know the proposed treatment plan, do your research, even if it’s a bit overwhelming at first. You will become versed in breast cancer lingo.

    I know it’s really hard not to fixate on the scary numbers you come across. I still have some stuck in my head, and they’re depressing. But I’m here and alive today, so I’d better get on with living! Hopefully you will get to a good place once you’re treatments are over as well.

    Good luck to you. ❤️

  • IM2C
    IM2C Member Posts: 16
    edited September 2019

    Hi Melissa, I’m also sorry that you’ve found yourself here! I am 33, was diagnosed back in May. I’ve found that age isn’t really as important as tumor characteristics. Also, being younger has helped me make it through treatments much easier (it’s harder on older folks many times).

    Some things that may be specific to you to keep in mind/ask about, given your younger age:

    -fertility preservation

    -if you aren’t interested in fertility, should your spouse or partner get a vasectomy (we were recommended to be aggressive about BC bc getting pregnant would have been bad for me)

    -radiation risks are worse for younger women because you have a higher chance of developing a secondary cancer from the rads. I’m deciding against rads for this reason.

    -find a support group with women your age, it’s a different ballgame and it’s easier to relate (not necessarily true for all, but was for me even though the other groups are filled with wonderful women too)

    -how long do implants last? I decided against reconstruction because at my age I’d have to replace the implants a number of times and with recall rates etc it just wasn’t worth it for me.

    -do an extended genetic panel (more than just brca1/2). There tends to be more of a genetic link with younger women.

    -bc you’re younger your body may be able to tolerate more alternative therapies to help with treatment. Personally, I fasted prior to each chemo, which is not something recommended necessarily with older patients but it’s been great for me. My side effects have been minimal, I take almost no prescriptions, and my docs say I’m having an amazing response to chemo even with an aggressive, triple positive, grade 3 tumor.

    Good luck to you sweetheart. The first month after diagnosis was the absolute worst for me mentally. It gets better.

  • Missmom79
    Missmom79 Member Posts: 202
    edited September 2019

    i was just diagnosed at 39

  • Missmom79
    Missmom79 Member Posts: 202
    edited September 2019

    i feel like I’m screwed because the IDC they found aré ER- and PR- and also they did a biopsy of my axiallry node and there was a “mynute” amount of IDC whatever that means.

  • Trishyla
    Trishyla Member Posts: 1,005
    edited September 2019

    Missmom79. A minute amount of IDC is a very small amount, probably 2 millimeters or less. That's very tiny (minute). It's still invasive ductal carcinoma, but it looks like they found it very early.

    This really is one of the hardest times. It will get better once you have a treatment plan in place.

    Best wishes to you as you wait for more answers.

    Trish

  • MelissaAshley
    MelissaAshley Member Posts: 15
    edited September 2019

    iM2C, thank you so much for your reply. Lots of helpful insight. May I ask what type of treatment you had instead of rads? did they suggest hormone therapy? I’m worried about the side effects of that as well as ive always suffered with abnormal uterine bleeding.... I feel stuck in that there doesn’t seem to be a treatment available without long term risk

  • Rhopper
    Rhopper Member Posts: 1
    edited September 2019

    hello. I am 34 and started taxotere, carbo, herceptin, and Perjeta. I’m stage 3, her 2 positive.

    I am newly diagnosed and terrified of this roller coaster I’ve been put on so young

    I am also quite concerned about permanent hair loss from the taxotere. Can anyone give me a positive experience or advice about taxotere vs taxol

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited September 2019

    1. I fasted too and had a great response to chemo/ minimal SEs. And I am old (58)! No bad SEs other than cumulative fatigue. (No fingernail issues, no puking, no skin issues, no neuropathy, just fatigue and anemia/ breathlessness by the end. But that took 5 chemos to hit really me.)

    2. Hair: I bought these freezable caps for migraine sufferers on Amazon, and got them very cold w dry ice. Used 4 in rotation during my taxotere infusion. (I had separate infusions for taxotere and carboplatin am/pm so I only iced for taxotere.) Also iced hands and feet and sucked on a frozen smoothie. I missed icing for the first infusion so a lot of hair did fall out, but not all of it... Then, I began re-growing hair *prior* to my last chemo. So I think the icing helped me.

    3. I used diet, exercise and a lot of complimentary practices. I saw an Integrative MO called Dr Keith Block in the Chicago area who has a book called "Life Over Cancer." I followed his approach but with my hometown MO. You can look in the TNBC forum for 'members success stories' and my whole program is described in that thread. (I figured whatever doesn't hurt and might help, I'd do.... quite a lot...) Not sure which practices helped the most but there are many homecare self directed things that do make a difference!

    4. OTC drugs (claritin, NSAIDS, Aspirin, melatonin and prescription drugs like metformin and some statins can have good anti-metastatic properties. Same w many supplements. Naturopathic physicians can be great resources on these.

    Wishing you the best. You are among friends!



  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited September 2019

    MelissaAshley, my understanding is that breast cancer in young women often - though not always - behaves differently and responds to treatment differently than the breast cancers often diagnosed in older women. It's important to have the best medical team you can.

    After my long odyssey, my one piece of advice to young women is to be treated at an NCI cancer center. If you can't be treated at one for insurance reasons or whatever, at least get a second opinion at one. But preferably do all your treatment at an NCI center. Outcomes are better at those centers overall anyway, and that's even more true for those of us under 40. Best wishes to you.

    https://www.cancer.gov/research/nci-role/cancer-centers/find

  • MelissaAshley
    MelissaAshley Member Posts: 15
    edited September 2019

    Thank you for the NCI recommendation... I just scheduled a consult with the only surgeon in my area who is affiliated.She will be my third opinion.. hoping to get some new insight/ treatment ideas...


  • IM2C
    IM2C Member Posts: 16
    edited September 2019

    MelissaAshley, I am currently finishing up neoadjuvant chemo - the PTCH cocktail (Perjeta, taxotere, carboplatin, and herceptin). I’ll have a mastectomy with a sentinel node biopsy. I had one node with “isolated tumor cells” at my initial biopsy, so that will come out for sure. I’m choosing to do a mastectomy rather than a lumpectomy partially so that I can avoid rads (I believe lumpectomies almost always require post surgery rads).

    I second the advice to go to an NCI breast center if you can. Also, I found that a lot of big name places do remote second opinions now, even if you don’t live nearby. You send your records and you can get the opinion via electronic consult. I got second and third opinions. In terms of radiation and surgery, both of my second opinions were hugely different than my firsts.

    RHopper, I’m on the same regimen and have had great success! Check out cold capping if you’re worried about hair loss. I did Paxman scalp cooling. My insurance (Aetna) even covered it. I stopped doing it after 2 chemos because even though I think it did “work” somewhat, he hair I did lose didn’t fall out evenly and I had weird bald spots that were hard to hide. It was just annoying to me so I quit and shaved my head. But I still haven’t lost all my hair, even after 5 taxoteres. It's sparse stubble for sure but the stuff that hasn't fallen out is still growing, too. So don't lose hope!

  • IM2C
    IM2C Member Posts: 16
    edited September 2019

    forgot to add - yes, my doc is recommending hormonal therapy after my chemo/surgery is through. I think 10 years (!!) of tamoxifen. I have 6 months of HER2 therapies to go still after surgery so I haven’t really started to think about or research the hormonal therapy yet.

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