Thinking about the future as stage 3, grade 3, Luminal B, age 31

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elise24601
elise24601 Member Posts: 155
edited August 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

Because my cancer has a pretty high risk of recurrence and spread, I think a lot about this possibility, even as I am currently just in the first phase of active treatment for my initial diagnosis this past May.

I think that having more information may help me feel less anxious about it. Can anyone answer some questions I have?

I am doing chemo, a double mx, rads, and then Tamoxifen for ten years. Highly ER pos, PR neg, HER2 neg. Waiting on BRCA testing.

1. If the cancer recurs locally in the breast tissue, what is the treatment protocol? I have heard radiation can not be performed more than once. As for surgery, can they operate on a reconstructed breast, and if so, how exactly? Would I have to sacrifice the cosmetic outcome?

2. If the cancer spreads to another site (mets/Stage IV), are there lines of treatment that do not involve traditional chemo? I am one of those people that did not tolerate chemo well (complications and hospitalizations for low counts, etc) and I have decided nothing is worth putting my body though it again, unless it was a much less harsh drug regimen without the debilitating side effects.

(I guess I just want assurance that if I have to deal with cancer again down the line, I won't have to feel as sick as I do now again, because I would prefer to just enjoy the time I have left without being weak and ill…is this possible???)


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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited August 2016

    Hi! I am so sorry you are going through this. Such a tough diagnosis for someone so young. I have no answers for you but I'm sure someone else will come along to answer your questions. I do know it's very helpful to be ER+ as that means all the AIs will be available to you.

    Sending hugs your way

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    Well, I'm older and had two 1cm tumors ilc and idc. Pr less than 1%, er 95%, oncodx of 34. I had mx and DIEP and i took hormone therapy anastrozole and exemestane for 3.5 years and quit. No node involvement. I was diagnosed at 53, very health, i said no to chemo. Five years later I'm still NED.

    My doctor was convinced it would return. I have read alot and looked at statistics and i just wasnt willing to put my body through chemo and have permanent side effects. The hormone therapy did a number on me i have a problem with one eye and ear due to exemestane. I think it is getting better. For me i refused to be sick QOL is everything.

    You are much younger, but remember you make the decision on treatment with advice from your doctor. I wouldn't put my sole confidence into my doctor's advice only. They want to throw the kitchen sink at these cancer cells and pray they buy you more time.

    Knowledge and vigilance is power. Good luck to you.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2016

    Hi!

    It's hard to answer your questions because each case is different. For example, your local recurrence could be in a lymph node and/or anywhere breast tissue remains. I do know that some BC patients here have managed to have surgery on their reconstructed breasts without having to deconstruct. Likewise, with mets, it may depend on where your cancer spread as to your protocol. However, many women will start off with relatively gentle treatments. For example, you might be prescribed an AI if you develop mets on tamoxifen. An AI is systemic treatment that has helped many Stage IV ladies achieve NED (no evidence of disease).

    I asked my radiation oncologist (RO) about doing radiation more than once for a local recurrence. He said that for him, it's not so much about whether it's "allowed"; rather, if it didn't work the first time, then that sends you a message that it's time to try something else.

    No one can guarantee that you won't undergo a recurrence; all you can do is make sure that you're comfortable with the level of treatment you've receiving now. I'm sorry you're having such a tough time with chemo; it's no picnic. Take care, and best wishes for the future.


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  • jensgotthis
    jensgotthis Member Posts: 937
    edited August 2016

    each patient is different but where Mets are concerned chemo is usually not the first treatment line and instead saved for later when other treatments have failed. Stage 4 is a balance between quality of life and treatment. Good luck

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2016

    Hi Elise,

    My original cancer was luminal B, node-negative but with swollen nodes (meaning some cancer cells had moved there, but my immune system got them) and LVI (lymphatic invasion- the cancer had also moved into my bloodstream. I had the standard ACT chemo treatment after,radiation, and then took seven years of AIs. Nevertheless, I was diagnosed with metastasis (extensive bone mets) after twelve years out. I am currently a year into AI (femara) with Ibrance (CDK4/6 inhibitor), and it is still working for me, with no side effects, fatigue, or pain of any kind. My strong recommendation to you is to plan to take AIs (ask if you can take with Ibrance) and plan to stay on them a full ten years, if not longer. And get an oncologist to give you a scan every few years, just so they can pick it up early and change treatments if it does come back. Don't be afraid to scan! But most of all, try not to worry at all, and live your wonderful life to its fullest. There are so many really remarkable drugs and immunotherapy combinations that are in development or in trials ongoing now,that if you ever have to deal with a recurrence, it may very well be literally a treatable chronic condition by that time. Until you know anything different, assume you will be one of the very lucky ones who got this common disease at a time in history when science was at an inflection point of getting a handle on it, such that everything turns out just fine for you!

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  • elise24601
    elise24601 Member Posts: 155
    edited August 2016

    Thanks Cure - I would love to have a cancer-free 12 years of my life. And by that time would hope that there are better treatments available! So glad you are not experiencing side effects. My onc wants to do Tamoxifen for 10 years and reserve AIs for if there is a recurrence. At 40 I may have ovaries out if I am BRCA pos.

    Can I ask how doctors test for or discover if LVI is present?

    Right now I'm just feeling so sick from chemo I can't imagine ever feeling well again.


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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2016

    Hang in there, chemo is much worse than everything else. I had lymphedema (arm swelling) induced by the chemo, so had to finish my chemo with lymphedema treatments, which made everything feel desperate and I could not have imagined a nice 12 year respite being completely normal after that. I realized that the standard treatments post-chemo are not to do any scans for mets (my doctors didn't do any) because studies show it does not extend life if recurrence is found early. But what I realized through these boards are that many women find the recurrence because the mets caused a femur to break, necessitating a rod insertion, or painful spine fractures, etc. I found mine because I had so much extra calcium floating around from the bone degradation that I got a kidney stone, and the scan showed met lesions. My femur would have fractured had I gone much longer. So, be sure to get an occasional scan after treatment. For sure if you complain of any rib or back pain, they wouldn't hesitate to scan you. It is also possible that they will get the blood tests approved and be able to detect recurrence that way. Anyway, just don't be terrified of recurrence, just take exquisite care of your health so that you can be there for the close-to-cures that seem to be on the way. Relax, breathe, be happy!!

    BTW, they already would have told you if you had LVI, it is part of the pathology report.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2016

    A couple of other thoughts: 1) When your treatment is all over, consider getting a second opinion from an oncologist at a major University Cancer Center, one with clinical trials where they know the latest buzz, and don't be afraid to travel if you have to, eg UCLA, UCSF, Memorial Sloan Kettering, MD Anderson, etc. Not just for advice, but if you get a recurrence, you will have met several oncologists and can better decide who works best with you. and 2) Luminal B cancer are more aggressive than Luminal A, and the low progesterone receptor levels are an indication that the cells are closer to resisting hormone treatments and, of course they could even mutate to triple-negative or HER2-positive.On the other hand, early studies are finding that luminal B cancers are responding better than luminal A to immunotherapy, which is great. Even 4-5 years from now, it will all be much clearer what is the best treatment- and the cancer moonshot is promising us they can do ten years of research in five, so there really is every reason to hope for genuinely effective therapies in the near future, with much fewer side effects than chemo.

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  • elise24601
    elise24601 Member Posts: 155
    edited August 2016

    Thanks again for giving me some hope. I'm actually being treated at UCLA!



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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2016

    Elise, I will address your second question. If you did develop mets, yes there would be options other than chemo if the mets were still hormone-receptor positive. Some current options are letrozole, faslodex (either one alone or with Ibrance), and aromasin (alone or with afinitor). And you should know that chemo for stage iv is not typically as harsh as chemo for earlier stage, and it is usually just a single chemo agent. Some are not even given intravenously, but in pill form. So there are a whole lot of us at stage iv enjoying our lives without debilitating side effects.

    Now I want to suggest something to talk over with your onc. Ask about whether for luminal B, PR-negative bc, an aromatase inhibitor might be more effective than tamoxifen. And ask if for someone your age who needed chemo, ovarian suppression plus an aromatase inhibitor might be better than tamoxifen. I understood the SOFT trial to indicate that for high-risk premenopausal women, this protocol had the best results. Ask your doctors how the SOFT trial results apply to you. And of course, quality of life is part of the discussion.

    http://www.breastcancer.org/research-news/some-ben...

    In my opinion, reserving the aromatase inhibitors for a possible recurrence doesn't make sense, because the important thing is to prevent going metastatic in the first place. And if you used an aromatase inhibitor and still recurred, there would still be several other hormonal treatments available.

    I hope, as you say, that getting more information will help you to feel less anxious. I am like that, and my husband can't understand it because he is a cross-that-bridge-when-I-come-to-it person. But if I imagine the possible scenarios and know that if they happen, I have a tentative plan, I worry less. Just realize when you are collecting useful information, and when you are spinning your wheels and need to go think about something else. Insist that your docs help you with your chemo side effects right now. Sending you good wishes for an easier time.

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  • KBeee
    KBeee Member Posts: 5,109
    edited August 2016

    Elise, Each case is different, but I had a local recurrence after mastectomy, and because it was between the pec muscle and the skin and the implant is below the pec muscle, my reconstruction was not impacted. They were able to take a large chunk of skin and a chunk of the pec muscle and close it in such a way that there's just a 3" scar, with no change in shape. Hoping you remain cancer free and never have to worry about that!

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  • LM070917
    LM070917 Member Posts: 323
    edited August 2016

    Hey Elise,

    I have similar stats to you and I was DX at 34 yrs old sept last year, that's nearly a year ago. It's very easy to get disheartened by the stats and although I did used to think about it a lot, you have to push negative thoughts like that aside and not let it rule your life. I'm a firm believer in thinking positively and doing everything you can (within your control) to reduce your risk of recurrence. I no longer drink or smoke, I maintain a healthy weight, no refined sugar or junk food, lots of exercise and positive thoughts. It might not sound like fun, but I love my life now, I've learnt to destress, put myself first and physically I feel healthier than I've ever been. Believe it or not things do get easier, the further you get out of DX. Have you looked at both al and zoladex as opposed tam? The results seem sightly better and I know quite a few young women on them. I also joined a young women's support which helped lots for venting. I don't see the point in wasting energy on something that might never happen and if on the off chance it does, then we'll cross the bridge when we have to.Stay strong

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