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Sad everytime I meet the doctor. Any hope stories?

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Atha85
Atha85 Member Posts: 6
edited March 2017 in Stage III Breast Cancer

I had neoadjuvant chemo - 4 AC and 6 THP for a 4.4 + cm tumor and 1 lymph node

The MRI post chemo showed no cancer.

When i had surgery, it came out to be 1+cm tumor left and 4/6 lymph nodes positive.

Today i learnt from MO that chemo might not be working really well since I already had 10 cycles and still came out with so much cancer left. Also, the hormone therapy recommended is for 10 years. Which means i cannot get pregnant till menopause, which i guess means never again.

I am just 32 and I have a beautiful 4 years old. I hope I atleast get to see her grow up . I dont want to live with this feeling of "dying" or "what if?"

Please share your story if you were in similar situation at this young age and have survived long!!!

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  • Tom1981
    Tom1981 Member Posts: 3
    edited March 2017
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    Atha

    It helps if you add your diagnosis information so everyone has a better understanding of your situation. If you have high ER positive cancer this seems to be pretty common for chemo not to work great. Your main tumor did shrink though and I'm guessing the nodes already were affected. The main thing is, it's out. My wife's tumor was large and 6 nodes had cancer. Like you, her tests showed nothing after chemo which is still a good sign in that it isn't active. It may not be a total response but depending on your markers the chances of complete response from chemo are probably slim anyways. The main attack for most is the surgery. The chemo, radiation, hormone therapy are generally in addition to that to lower your recurrence chances.

    As far as age and kids. My wife is 39 and we have no kids as we are newly married. Cancer was our one month wedding present. So we have decided when we are ready, to go for adoption. There are plenty of women your age that go on to live normal lives. In fact, even though I'm just guessing on your stats, more people than not in your situation make it through to the other side. I repeat, most people diagnosed with breast cancer die from something else. You can do this.

    My advice is to be aggressive, be informed, ask questions, educate yourself on your unique situation, live a healthy lifestyle and enjoy life whether you have 60 years or 60 minutes. If you have questions don't be afraid to ask. I'm constantly educating myself to better serve my wife. Her oncologist laughs at how prepared I am at each meeting. The way we look at it is, if we can keep chopping away at the risk of recurrence percentage then eventually we will get to zero (that might be a stretch but that's the goal). Sure for some, chemo only increases the odds by 2 percent but what if you are one of those people in that 2 percent. That's everything.

    Wishing you the best.

  • yatcomw
    yatcomw Member Posts: 58
    edited March 2017
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    Tom1981 post is excellent so I don't have that much more to add.

    I will tell you that my tumor was 8cm and I had 17 nodes positive... it was in my skin....I was a hot mess. I will be 13 years out in May.

    I don't know if the aggressive chemo worked on my cancer or not since I had surgery first......but I have always believed that Femara has been my wonder drug.

    I would get a second opinion on whether you can't have children now. I know plenty of women that have gone on with having children with your stats. I saw no less than 6 opinions with my cancer....there is nothing wrong with speaking with someone else particularly at a good cancer center.

    Hang in there.....it does get better. Odds are you will be here a long, long time.

  • LM070917
    LM070917 Member Posts: 68
    edited March 2017
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    Hey, I'm 36 now, but was dx 1.5 year ago with aggressive ductal bc (stats below). I had surgery first, then chemo and rads. I had the chemo as an insurance policy. I have no idea how well it did or didn't work. I have no children and on hormone therapy, but all being well, I do plan on having a break after 4 years to try for a baby. I'll be 39 then. I plan to go back on hormone therapy afterwards.

    I changed my diet and lifestyle. I exercise most days and believe it really helps, not only keep weight stable, but stress levels down.

    Life is good. It's ironic but I feel happier now. Shame it took cancer for me to change a few things. Recurrence is a worry for us all, but time really is a great healer and it gets easier the further out you get. Life goes on and so will yours..

    I did join a young women's support group once first dx and it really helped and I have remained friends with quite a few of those ladies. We're in it together..

  • AgentMo
    AgentMo Member Posts: 3
    edited March 2017
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    Dear Atha,

    Your words have touched me because they remind me so much of my story. I was diagnosed with 33, which was in 2010, and at that time I would never have thought that I would be alive almost seven years later. Yet, here I am.

    I have no great advice to offer you, because what you are feeling is what I was feeling and what I often still feel. I have never entirely left the scary bubble, which may not be what you want to hear at the moment, but I hope it helps to know that you are not the only one feeling like that. And in time, to a certain extent you learn to live with it.

    At the beginning there hasn't been an hour without me thinking about cancer and dyning. That has changed, I now certainly have hours where I don't think about it (though not yet days). And a certain kind of acceptance has come to me, because no matter what I think or do, there is only a limited amount of influence I have on what is going to happen. I follow the doctors' advice, I eat reasonably, I go to the gym. I still feel somewhat betrayed for having to fight cancer rather than raising a child as I wished to do.

    But even as it is, my life today is so much better than it was when I was diagnosed. I hope you will be able to handle the situation a bit better than I have and experience more joy that I do.


  • ssinuk
    ssinuk Member Posts: 63
    edited March 2017
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    Dear Atha, I'm so glad for you you have a gorgeous 4 year old, she will pull you through this and make the future rich again like nothing else. And don't despair - if you do decide to stay on hormone therapy for ten years you'll be 42 when you stop. I had my own gorgeous daughter at 43. All things are possible. Hold your little one tight - children are so wholly in the moment, they're the best therapy, even as they wrench your heart.

  • Atha85
    Atha85 Member Posts: 6
    edited March 2017
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    Thanks Tom1981, Yatcomw, ssinuk, agentmo, lottemarine

    You guys gave me a lot of relief by your words.

    Since I am through with chemo and surgery I will start believing that I am in remission and follow the diet , excercise and happiness routine :):)

    You are right Agentmo I think the scary bubble might not leave me so soon or would probably stay forever.But I will try to look beyond that.

    Tom1981, you are such a great support to your wife and you seem so well informed.

    I did update my profile with diagnosis and treatment , but somehow it does not show in my signature.

    Lottemarine , I hear you. There are so many things that cancer taught me too.most importantly:life is so precious and there are so many things to be happy about rather than complaining about things you cant change or have.

    Yatcomw, Ssinuk . Yes I am glad i have a beautiful daughter who is making me smile through this. Will check with my doctor if i can have a break for 2nd child. Else I might adopt a child after a couple years , who might in return bless my life and make it more beautiful.

  • Mamabear0
    Mamabear0 Member Posts: 4
    edited March 2017
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    Hi Atha!

    I also have much in common with you. I was 32 at diagnosis, 2 years ago this April. It seemed to keep getting worse. It went from "It's DCIS" To "Its not cancer at all" to "Its IDC, but not definitely not in the lymph nodes" to 6 CM of cancer and 7 lymph nodes at surgery. I also had surgery first, so I have no idea if chemo worked or not. I actually like it better not knowing! I have 3 kids, my youngest was 15 months when I was diagnosed. I focused on my family and the Lord to get me through treatment, though I found my anxiety increased after treatment, especially around the 1 year mark. Now it comes and goes! Some days, I only think about cancer once or twice. I agree with TOM - I see the bar graph of how much chemo and hormone therapy usually help, then I add anything I can to get the red of the bar graph into green - daily exercise and healthy eating can cut your risk in half! Other supplements as well. I keep just trying to get that green of "survivors" as long as possible. The SOFT trial, which changed the practice of hormone therapy for women our age offers a great benefit! I am also in an immunotherapy/Herceptin trial, more to get me the Herceptin which *could* help women with my small levels of HER2. Just be your best advocate! I don't agree that it is a just a crapshoot. I can do everything I can to survive, and if it doesn't work, then I can't say I didn't try!

    I, too, want more children. I may take a break from Exemestane at the 5 year mark to try, I may change my mind. But I like that it is on the table. I try to take it one day at a time, and cancer has really made me do this! I wake up, and thank God for today, since today I don't have cancer. Who knows about tomorrow - but I don't need to worry about that!

    My husband and I are also getting our foster care license. We can help parent others who's Mamas aren't so lucky, and maybe adopt that way.

    PM me if you ever want someone to talk to! It is so important not to feel alone in this!!

  • Mamabear0
    Mamabear0 Member Posts: 4
    edited March 2017
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    Hi Atha!

    I also have much in common with you. I was 32 at diagnosis, 2 years ago this April. It seemed to keep getting worse. It went from "It's DCIS" To "Its not cancer at all" to "Its IDC, but not definitely not in the lymph nodes" to 6 CM of cancer and 7 lymph nodes at surgery. I also had surgery first, so I have no idea if chemo worked or not. I actually like it better not knowing! I have 3 kids, my youngest was 15 months when I was diagnosed. I focused on my family and the Lord to get me through treatment, though I found my anxiety increased after treatment, especially around the 1 year mark. Now it comes and goes! Some days, I only think about cancer once or twice. I agree with TOM - I see the bar graph of how much chemo and hormone therapy usually help, then I add anything I can to get the red of the bar graph into green - daily exercise and healthy eating can cut your risk in half! Other supplements as well. I keep just trying to get that green of "survivors" as long as possible. The SOFT trial, which changed the practice of hormone therapy for women our age offers a great benefit! I am also in an immunotherapy/Herceptin trial, more to get me the Herceptin which *could* help women with my small levels of HER2. Just be your best advocate! I don't agree that it is a just a crapshoot. I can do everything I can to survive, and if it doesn't work, then I can't say I didn't try!

    I, too, want more children. I may take a break from Exemestane at the 5 year mark to try, I may change my mind. But I like that it is on the table. I try to take it one day at a time, and cancer has really made me do this! I wake up, and thank God for today, since today I don't have cancer. Who knows about tomorrow - but I don't need to worry about that!

    My husband and I are also getting our foster care license. We can help parent others who's Mamas aren't so lucky, and maybe adopt that way.

    PM me if you ever want someone to talk to! It is so important not to feel alone in this!!

  • Tom1981
    Tom1981 Member Posts: 3
    edited March 2017
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    Atha

    There is setting somewhere in your account about turning on sharing. No biggy if you can't figure it out. It just can be helpful when asking,questions.

    Mamabear

    What supplements are you taking and why? Just curious.

  • runnergirl26
    runnergirl26 Member Posts: 66
    edited March 2017
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    Although I was diagnosis at 51 and will be three years from diagnosis in April I just wanted to say I understand your feelings of sadness and worry. You might check out to see if where you get your treatment they have any "young survivors" support groups. They have such a group where I get treatment and I was invited to go to this support group when I was first diagnosed by my nurse navigator (I think there definition of "young is loose) I only went two times when I was going through treament and then stopped going. I just went again last month and it really is encouraging to hear others stories and know that you are not alone in your feelings and thoughts. I am so glad I went this last month; I have to look at it as it's an investment in myself instead of just giving up more time to cancer. Know that you are not alone; its a shitty disease and it is frustrating when people look at you after your treatment and think that you should be just the same as you used to be. Hang in there and come to this site for questions as there is a lot of individuals on this site with a ton of knowledge.

  • wildplaces
    wildplaces Member Posts: 544
    edited March 2017
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    to make your diagnosis public - go top corner 'setting' and open a screen allowing you to choose what you would like to share

    It's a long road and many things can happen with treatments in ten years - you are young - focus on being well and options regarding children will hopefully follow :)

  • Mamabear0
    Mamabear0 Member Posts: 4
    edited March 2017
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    Tom1981 - I try to limit supplements to things that I know are important for me personally- so I take calcium and magnesium (because I am on an AI), D3 (my numbers were borderline diagnosis, but could be better!, curcumin (lots of research on this, I am taking it for a few reasons), fish oil, and sometimes Turkey Tail mushroom supplements. I take those because my lymphocyte count is on the lower side after treatment. I did notice a boost in my counts after taking them for a few months! Most of the supplements I take are based on Dr. Block's Life Over Cancer book.

  • Tom1981
    Tom1981 Member Posts: 3
    edited March 2017
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    Mamabear,

    I've been pumping my wife full of turmeric. I read nothing but good. As for the others, I intend to start her after radiation since I read some supplement issues with radiation. I hear mixed things about D3 and breast cancer. Ive been meaning to ask the doctor his feelings.

  • Mamabear0
    Mamabear0 Member Posts: 4
    edited March 2017
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    Yes, I also did not take any supplements during radiation! I think the key to vitamin D is getting her levels checked, and taking the right amount.