Just diagnosed and already Stage IV, 34 years old and scared
I am a 34-year-old who only one month ago thought I was perfectly healthy. Then I found a lump in my breast (which I attributed to post-weaning lumpiness, as I had weaned my 1-year-old recently), but I got it checked out anyway, and what followed was a blur of tests and bad news. I have triple-positive invasive ductal carcinoma in my right breast, and they also found a met in my liver, so I'm now classified as Stage IV right from the get-go. So far, that one in my liver is the only one...
I am feeling very scared and alone, and I'm just wondering, is there anyone out there with a similar story to me? Young and diagnosed Stage IV right away? Anyone diagnosed Stage IV with only 1 liver met? I just don't know what to think. I've already started chemo (Taxotere/carboplatin and Herceptin/Perjeta for my HER2).
I have two young children, the aforementioned 1-year-old and a 5-year old, and I can't believe this is happening to me!
Comments
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Oh sweetie, I'm so sorry you are going thru this. My situation is not similar to yours, but I didn't want you to be alone while you wait for someone better qualified to come along! Sending big hugs, and I know there are lots of women with a similar diagnosis to yours who will be along shortly. Xoxoxoxoxox xoxo
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Hi BrooklynElie,
I am so sorry you have found yourself in this situation. I was diagnosed last year at age 35, with mets to bones from the get go. You have come to the right place for support. If you come over to the Stage IV board you will find lots of support and women in similar situations. Whatever you do, don't turn to Dr. Google. Most stats you find are outdated. You are in my prayers.
Sarah
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https://community.breastcancer.org/forum/8
Here is link to stage 4 forums
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BrooklynEllie so sorry to hear your news. There is a woman, Bestbird, who has written a very comprehensive metastatic breast cancer guide. PM her on this site and get it if you can. She also has some information about oligometastatic stage 4, which is when only one met is discovered.
Gentle hugs, and I wish you the best!
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BrooklynEllie-
We want to welcome you to our community here at BCO. We are so very sorry for what you're going through, but we hope you find the support you need here.
When you get a chance, definitely check out our Stage IV forums. They're full of valuable information, and also a wonderful community of women who can help you through the next weeks and months, as you navigate your disease. Also, we second the suggestion to pm BestBird, she has so much information and help to offer our newly diagnosed Stage IV members.
Please let us know if you need assistance in any way, we'll be thinking of you!
The Mods
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BrooklynEllie:I am so sorry that you have had to join the stage 4 community. There is so much support and info.here.I have 5 children and when I was diagnosed two years ago they were 8,10,13,16,23. I have been open and honest with them but their lives are different then they were before-not worse just different. Two years ago I was scared to death and didn't know if I would be around 6 months later but here it is over two years later and I am planning on many more. It is a shocking diagnosis-I too was diagnosed at stage 4 and was healthy and active I know for me that once I had gotten a 2nd and 3rd opinion and a treatment plan was put in place I felt that I had some control. I am sending hugs and prayers and try to enjoy the time with your precious children.
Best Wishes
Kristin
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Brooklyn Ellie: I was diagnosed this month at 38 at stage 4 with extensive bone mets. I also have one questionable spot on my liver, although they think it is something else. But what my medical oncologist did say is that you can be fine with a liver met, the liver is very good at compensating, and that if it is cancerous, it should be very responsive to treatment.
I agree that it is so scary to be living our lives and raising young children and suddenly find out our bodies have been dealing with something like this for a long time. It sounds like you are in good medical hands. I'm trying to instead of being terrified that the cancer is already advanced, being grateful that it was found when it was. Not an easy task. But I am grateful that it is 2015 and there are myriad options available.
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Hi BrooklynEllie,
I'm Joseanna im 42 and have 4 kids and I too was just diagnosed stage IV the first time on the 18th😠
I found my lump back in February while pregnant. My OB didn't think it was cancer , just possibly a blocked duct from being pregnant but sent me for an ultrasound. The radiologist sent me for a mammagram and they concluded it was dense breast tissue. Come back in 6 months. So by July my lumps had spread to my underarm axillary, collarbone and up my neck. I started with a mammagram and the ball started rolling and I was referred to a surgeon who then told me from the tests he believed (99%)it was breast cancer and it was in my lymph nodes. He ordered a MRI and PET and made an appointment with an oncologist.
My oncologist said it's definitely breast cancer, it's metastasized to your liver and abdomen and bone. 😠😢
So it's only been 4 days. It's a lot to process. Telling family. Rearranging scheduled for tests and chemo. I'm a stay at home mom so i now need daycare for my baby, thankfully my kids start school on the 31st.
Every single woman on here has been amazing! I love waking up at 2 am and logging on and reading their encouraging and strengthening words.
Big huge hug to you. Your a strong woman and we're gonna kick this cancers booty😁😎💪👊
~Joseanna
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Hi BrooklynEllie--
I'm not a young BC patient like you are (my kid is a grumpy teenager) but I wanted to wish you well. I was diagnosed a few months ago and after chemo things seem to be looking better. I'm sorry you have to go through it and sorrier that you have to do so with a toddler at home. Am I right to assume from your name that you live in Brooklyn? If so--me too! There are so many helpful people on these boards, and I've learned a lot here. Good luck to you!
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I was diagnosed February 10, 2015 that I had Her2+ ER/PR- stage 2b breast cancer. I was 25 years old (now 26) and was supposed to start vet school Fall 2015, but have had to defer. I finished 6 months of chemo and then surgery and I am now starting radiation in about two weeks. Pathology results came back last week that NO CANCER was found in my breast tissue or lymphnodes which means that I had a complete response to the chemo! My regimen is similar to yours except I started off with Adriamycin+Cytoxan and finished with Herceptin, Docetaxel, and Pertuzumab.
I was so sad to read your post, but please know that today's medicine is fantastic and this year will pass by fast. Most importantly, GOD IS GOOD and He is the ultimate healer. Be strong, pray, and have faith.
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Thank you all so much for your words of kindness and support. What a lovely community this is! I am so appreciative and relieved. It's so reassuring to hear that HER2 targeted treatments have gotten great results, and I feel lucky to be living in a time when these treatments are available. I am trying to stay positive, let the treatment go to work, and give my body a chance to get back ahead of the curve.
I will definitely check out the stage IV boards (and avoid scary Google statistics).
And, rainnyc, I do indeed live in Brooklyn! Love it here :-)
Also, the one good thing about my kids is they keep things relatively normal. Life goes on, lunches have to get made, diapers need to be changed, etc. I do fortunately have my family nearby to help, which has been helpful this weekend as I feel extremely icky after my first round of chemo.
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BrooklynEllie, you said you feel icky. What side effects are you experiencing? I did the same protocol except the Perjeta, which I have read can cause wicked diarrhea.
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BrooklynEllie I'm so sorry you found yourself here in such a speedy fashion- although my life circumstances are different from yours, and I'm a bit older, I too went from 0 to 360 stage IV out of the gate.
It is overwhelming, but this is a good place to gather info and to pour your heart, feelings and questions.
I am in Brooklyn too, perhaps Rainnyc, you and I ( and any other BK ladies) can connect. I have reached out and met several people in person and I really find it helps to have human to human contact with others going through things. On a side note I am thinking of creating a small yoga group with a sequence focused for those of us with mets- anyone in the area LMK/pm me if interested.
gentle hugs to all
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I am indeed in Brooklyn: Fort Greene. I wouldn't be surprised if there were others.
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Italychick, I had my first round on Thursday, and Friday I mostly felt fine, just a bit tired and not much of an appetite. I even went to the beach! Yesterday a lot more nausea kicked in, and now today my entire body aches and my bones feel like they are full of lead. I'm told this is a result of the Neulasta booster shot, which I had the day after chemo. Ugh!
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brooklynEllie, did you do Claritin? I did it the day I got Neulasta (at least an hour befor) and for about 4-5 days after. I never had any bone pain. Claritin works for some, but I have seen posts on here for women it didn't work for. Get the regular Claritin, not the Claritin-D. It can't hurt to try.
As for nausea, never let your stomach get completely empty. Like a handful of almonds, something small regularly. I never had any nausea and didn't take meds, but I was strict with myself about eating small little bits of food to not let my stomach get empty.
Day 4 was my worst day. I think it was because I took steroids for two days after chemo, and day 4 is when they weren't as effective anymore.
Also, I took magnesium and potassium. Chemo depletes these substances, and even with supplementation my potassium got on the low side. Sometimes nausea can also be related to not regularly pooping, and magnesium helps with that.
How many rounds of chemo are you doing?
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Wow, I never heard that about Claritin. Will try that next time. And the magnesium/potassium as well...do you just take a supplement? I am doing six rounds, every three weeks, so I have five more to go after this.
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yes I just take magnesium and potassium supplements. At one point, my MO did a prescription for potassium but I didn't like what else was in the pill so I just bumped up my own supplements and got it back to normal.
To me, of utmost importance, is monitor for any neuropathy issues, tingling, numb spots in feet or hands, or burning spots in feet or hands. I think they can switch you to Abraxane if you get neuropathy. Same chemo agent, without preservatives I think. Insurance doesn't approve it as a first line chemo because it is more expensive since it doesn't have a preservative in it that gives people problems. I had to stop after round 5 due to neuropathy, which has mostly resolved now, still some issues, but not unmanageable. Scary for me, but my MO said I got plenty of chemo. They are doing a trial now, or so she said, to determine if 4 is as effective as 6, and she said so far it seems to be.
Please let me know if I can help in any way, and best of luck!
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italychick, are you still having problems with neuropathy? Just wondering because I just started taking Lyrica for mine about a week ago and curious how long I'd have to take them.
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my neuropathy has mostly subsided. We have been having super hot and humid weather, and I have had some leg tingling, but I think it has been related to the heat.
How long have you been told to take the Lyrica?
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best wishes to you i was diagnosed at 38 years old with a one year old. soooo scary but God is amazing. :-)
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Hello!
I was diagnosed Stage 4 with two very small mets in my liver from the door in June at 36 after being misadvised by my doctor twice when I originally found the lump a year and four months prior and being told it was only a cyst. I wish you well!! Fight hard
Monika
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We are here to send you all hugs , and ask how things are going. We're here for you!
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My husband and I are sorry to hear about your diagnosis. It hits close to home. I hope you are doing better. You are not alone.
I am 34 years old too. It's not stage 4 from the get go but I was diagnosed with Stage 3C--10 cm lump on my right breast and several lymph nodes are positive.It was after weaning off my 8 month old that it was discovered. I started chemo on my birthday and it has been surgeries, treatments and I never really thought of it as gone. I knew it will be back, and sure enough it came. Stage 4 with extensive liver Mets. I was diagnosed on our wedding anniversary, Nov 6. My husband was deployed then in Afghanistan and I had to tell him the news on Skype. We sent a red cross message and was able to bring him home in time for my first chemo treatment yesterday. It's a good day.
I was very scared at first, but he told me---you know I go on missions (He's an Army Infantry Ranger), and I always think that the last time I Skype with you maybe my last, but I still go on--strong and unafraid, because I tell myself--not today. NOT TODAY. I know I will not live long, so I start making journals for kids to remember me by. I want them to always know about me, what I like and what I have enjoyed doing with them. They are young too--They are 4 and 7 now. My twin sister started collating photos and I started writing letters to my kids for the different milestones in their life. Letter when they have their first boyfriend, Letter when they finish high school, letter through puberty. etc.
Your family is in my thoughts and prayers. Love, Kim
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I am scared for you as well because it is hard to find out that the cancer has metastasis. I just found out that my cancer has metastasis into my bones. When researching the disease there is no cure, so I'm scared as well. Even thought my doctor has given me hope of the options and that it can be maintained I feel that this is the end of my existence and that I will die of a very painful death. I have very little hope unlike my first diagnosed and then I went into remission to fine out that it went into my bones is devastating.
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Laruelorraine - Sorry to hear of your bone mets but glad you found these forums. Your doc is right that there are many treatment options. I was diagnosed with bone mets 2 years ago and doing very well. What is your treatment plan? There is a link to stage 4 forums on the the top of this page, and one of particular interest to you might be the bone mets thread. There's a great bunch of ladies there and we exchange a lot of info, knowledge and support. Feel free to visit the thread and jump in any time.
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One thing that helps me is to think that maybe treatment will keep us going long enough for a cure to be figured out. Maybe it will be immunotherapy. They are learning more all the time. And if not, when we need it we canget hospice and our doctors to help us not to suffer too much. But that's not today, and where there is life there is hope!
BrooklynEllie, have you looked up oligometastasis?
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Hello,
I've been lurking and hanging out for a while since I'm a newbie to the stage IV club (totally not where I wanted to be). I was diagnosed in October 2012 with Stage I at 35 (two weeks before my 36th b'day), had a mastectomy with immediate reconstruction of my left breast (DIEP flap) and followed that up with chemo (TCH) and finished out the year of Herceptin. I would jump on the discussion boards from time-to-time with my own experiences back in 2013. Well here I am again, just got the news earlier this month that I have mets to my lungs and liver (fuck!!), but I'm hanging in there. I start Kadcyla on Wednesday (12/2) and we'll see how this goes; I'm happy to know there's something out there for my crazy off-the-charts HER2+++ along with 1) praying for effectiveness and a good response to this new med, 2) that this is tolerable on my body, and 3) that I'm here for a long time to come. I'm single with no kids, but I do have an amazing family that's been there since we got in this fight with stupid cancer a few years back. I'm praying for all us Stage IVs that things are well and will continue to be.
Because of grace...--SA
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You aren't alone. Living with Mets × 1yr. I am a mommy of twin boys 13! I have been on clinical trials, oral chemo & now Gemzar/ Carbo infusion chemo. I am 38. I an relate to you...Stay positive, Live every moment, Trust God for a complete healing! I am looking into blueberry consumption It slows down Mets! !
Blessings,
DESI
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Thanks...just recently had a PET scan and things are working...significant tumor shrinkage, but progression with a lesion in my lung. Not sure if it's an inflammatory thing or worsening of the cancer. Sigh...just moving along day-by-day. Haven't heard about blueberries slowing mets...I know they're good for you, but will have to look closer into that.
Best,
Shauntice
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