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Topic: Under 40 Stage IV, how many are we?

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Apr 18, 2018 08:18AM

alwaysbepositive wrote:

Hi ladies,

I am new to the posting thing, but wanted to see how many women under 40 are Stage IV like me. In every day life, it feels like I'm the only one sometimes, but I know, unfortunately, there are many of us and seems like it's on the increase. Terrifying, since most under 40 don't get mammos, we discover the problem ourselves. Or in my case, had no lumps, just very dense breast and a leaky nipple which made me contact my GYN

Dx 5/21/2017, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 2, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/12/2017 Mastectomy: Left Targeted Therapy 8/15/2017 Perjeta (pertuzumab) Chemotherapy 8/15/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/16/2017 Herceptin (trastuzumab) Chemotherapy 9/7/2017 Taxol (paclitaxel) Radiation Therapy 1/4/2018 External: Bone Hormonal Therapy 1/6/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/2/2018 Prophylactic ovary removal Hormonal Therapy 4/4/2018 Arimidex (anastrozole) Hormonal Therapy 6/10/2018 Femara (letrozole)
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Apr 18, 2018 01:57PM illimae wrote:

I’m close, I had a mammo at 39 due to family history which was clear, then suddenly a huge lump, seemingly overnight at 41. Stage IV from the get go. There’s a young stage iv thread here and a young MBC Facebook group, I can find the names if you’re interested.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 18, 2018 03:14PM alwaysbepositive wrote:

Yes I would love to be apart of that thread! Sorry, I don't have a Facebook account, my family made a pact a few years ago to not do it. I know it is great for many things, we just are against the bullying it seems to bring out in people and we are trying to set a good example for our kids. We are probably like the last 4 people on Earth that don't do FB, Lol.

Have a beautiful day

Dx 5/21/2017, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 2, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/12/2017 Mastectomy: Left Targeted Therapy 8/15/2017 Perjeta (pertuzumab) Chemotherapy 8/15/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/16/2017 Herceptin (trastuzumab) Chemotherapy 9/7/2017 Taxol (paclitaxel) Radiation Therapy 1/4/2018 External: Bone Hormonal Therapy 1/6/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/2/2018 Prophylactic ovary removal Hormonal Therapy 4/4/2018 Arimidex (anastrozole) Hormonal Therapy 6/10/2018 Femara (letrozole)
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May 3, 2018 07:10PM 4Blessings2LiveFor wrote:

I'm 34. Was diagnosed as stage 4 last year at age 33. We don't do Facebook either. Nice to meet you alwaysbepositive. :). I'm new at posting too.

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May 5, 2018 04:59AM alwaysbepositive wrote:

4Blessings2LiveFor,

Hate that we are meeting this way, but it helps to chat with others in our same shoes. I was wondering since we are both too young to get mammos, how did you discover yours?

Take care Smile

Dx 5/21/2017, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 2, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/12/2017 Mastectomy: Left Targeted Therapy 8/15/2017 Perjeta (pertuzumab) Chemotherapy 8/15/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/16/2017 Herceptin (trastuzumab) Chemotherapy 9/7/2017 Taxol (paclitaxel) Radiation Therapy 1/4/2018 External: Bone Hormonal Therapy 1/6/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/2/2018 Prophylactic ovary removal Hormonal Therapy 4/4/2018 Arimidex (anastrozole) Hormonal Therapy 6/10/2018 Femara (letrozole)
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May 5, 2018 09:32AM Daniel86 wrote:

Hey there

My wife is in the list too. She is turning 40 in November and was diagnosed a couple of months ago. As for how, she just felt a lump in her breast and pushed to get a mammogram asap and there it was. Radiologist and breast doctor downplayed the situation saying it was looking ambiguous but we felt from the get go it was going to be cancer. We just never expected it would be that far along.

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May 5, 2018 03:19PM - edited May 5, 2018 03:20PM by Bad_At_Usernames

Hey there! I just turned 33. I was dxed Stage lllc at 28 and Stage IV at 30. I found a large lump getting ready for bed that seemed to spring up out of nowhere. I got it checked out just to be safe" but I never seriously suspected cancer until I got the dx because who gets breast cancer in their 20s??? Plenty of women as it turns out...

"...to survive this disease, you had to be an eternal optimist and very aggressive..." -Vince DeVita Dx 12/23/2013, IDC, 6cm+, Stage IIIC, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/15/2014 AC + T (Taxol) Targeted Therapy 3/16/2014 Perjeta (pertuzumab) Targeted Therapy 3/16/2014 Herceptin (trastuzumab) Surgery 7/10/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/28/2014 Breast, Lymph nodes Targeted Therapy 9/22/2014 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 11/17/2014 Zoladex (goserelin) Hormonal Therapy 1/31/2015 Femara (letrozole) Dx 1/7/2016, IDC, Stage IV, metastasized to brain Targeted Therapy 1/14/2016 Verzenio Radiation Therapy 7/27/2016 External: Brain Targeted Therapy 11/15/2016 Tykerb (lapatinib) Dx 3/23/2017, IDC, Stage IV, metastasized to liver Chemotherapy 3/28/2017 Xeloda (capecitabine) Chemotherapy 8/29/2017 Taxotere (docetaxel) Radiation Therapy 2/27/2018 External: Brain
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May 5, 2018 04:38PM jamiemarie wrote:

Count me as another who felt a lump and brought it up to my doctor. Staging scans found mets in my liver. This was when I was 34 I’m 37 now.

Nice to meet you all, though, its just unfortunate its under these circumstances!

Dx 12/2015, Stage IV, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant)
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May 5, 2018 07:31PM NouzayO wrote:

wow!! I hate that there are so many of us!

I am one of you as well .. got diagnosed a year and a half ago at age 36 with stage IV de novo while being pregnant..I had an incredibly tough pregnancy that left me bound to a wheelchair in the last few weeks and my stupid OB kept saying that’s kind of common for a person getting pregnant after 35!!

Well it turned out I had mets all over my spine, scapula, sternum, pelvis, hips and legs as well as liver .. in addition to a few compression fractures due to the extensive bone mets and the weight of the baby .. no wonder I was in so much pain!!

Dx 9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- (FISH) Hormonal Therapy 10/2/2016 Femara (letrozole) Targeted Therapy 10/15/2016 Ibrance (palbociclib) Chemotherapy 4/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/9/2017 Xeloda (capecitabine) Chemotherapy 2/15/2018 Doxil (doxorubicin) Targeted Therapy 5/13/2018 Verzenio Hormonal Therapy 5/15/2018 Faslodex (fulvestrant) Targeted Therapy 1/11/2019 Lynparza
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May 5, 2018 10:33PM Groovywilma wrote:

Ugh! It IS awful that there are so many young people here! I was 36 when I got diagnosed. Found the lump myself and was assured it's just "glandular tissue" at first. But I was already having pain in my hip, back, and legs that turned out to be the bone mets. I am 43 now and still trekking along! Wishing everyone here the best of luck!

Dx 1/3/2011, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 7/25/2013 Faslodex (fulvestrant) Hormonal Therapy 9/2/2015 Femara (letrozole) Targeted Therapy 9/2/2015 Ibrance (palbociclib) Chemotherapy 12/18/2015 Xeloda (capecitabine) Chemotherapy 4/7/2016 Gemzar (gemcitabine) Chemotherapy 3/31/2017 Navelbine (vinorelbine) Chemotherapy 4/21/2017 Taxol (paclitaxel) Chemotherapy 10/4/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole)
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May 6, 2018 12:42AM Becs511 wrote:

Also a member of the very exclusive club of “under 40 Stage 4”!

I was diagnosed de novo in May 2014, the week of my 33rd birthday. The worst bday gift e.v.e.r and it came with a no exchange or return policy!

Next week, I will hit 37 and my 4 year mark of living! with MBC. I am stable from the neck down but have been dealing with some radiation necrosis due to gamma knife to 8 brain mets. I’m fresh from a double crainetomy that was done on April 17th where they removed some of the dead tissue from my brain! Wow, what a difference it made. 2 nights in the hospital and 2 weeks with staples in my head and now back to “normal” and I feel like I’m thinking clearer again!

Age at DX: 32. Childhood Leukemia survivor. Triple Positive mets and Triple Negative at the same time! Dx 5/5/2014, IDC, 5cm, Stage IV, mets, ER+/PR+, HER2+ Targeted Therapy 5/22/2014 Perjeta (pertuzumab) Chemotherapy 5/22/2014 Taxol (paclitaxel) Targeted Therapy 1/16/2015 Kadcyla (T-DM1, ado-trastuzumab) Surgery 6/17/2015 Prophylactic ovary removal Dx 7/1/2015, IDC, Left, ER-/PR-, HER2- Chemotherapy 7/20/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx 2/2016, Stage IV, metastasized to brain Radiation Therapy External: Brain Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine) Chemotherapy Other
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May 7, 2018 07:20PM amandalynn wrote:

I was diagnosed at 25, and am 27 now. MBC right away as well. It took four different doctor before I could even get a mammogram, because they were all sure I couldn't have cancer because of my age. :/

Dx 1/18/2017, IBC, Left, Stage IV, metastasized to liver/lungs, ER+/PR+, HER2- Chemotherapy 2/8/2017 Taxol (paclitaxel) Chemotherapy 10/5/2017 Adriamycin (doxorubicin) Chemotherapy 12/11/2017 Halaven (eribulin) Targeted Therapy 5/6/2018 Ibrance (palbociclib) Hormonal Therapy 5/6/2018 Femara (letrozole)
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May 7, 2018 10:43PM rojojo wrote:

I was diagnosed de novo a few months back in March at age 37. I had a weird skin indentation that formed close to my armpit. I thought it might be a skin infection as I have pretty sensitive skin. My doctor felt a lump behind it and a CT scan showed mets to the liver and lungs. I never felt a thing and felt perfectly healthy.

Nice to meet you all.

Dx 2/2018, Stage IV, metastasized to liver/lungs, ER+/PR+, HER2+ Targeted Therapy 3/4/2018 Perjeta (pertuzumab) Targeted Therapy 3/5/2018 Herceptin (trastuzumab) Chemotherapy 3/5/2018 TAC
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May 7, 2018 11:05PM Bad_At_Usernames wrote:

Hey Becs, were those spots definitely confirmed to be necrosis? I had some growth in one of my tumor beds that could be necrosis or progression but we don’t know. I’m glad you are doing better!!

"...to survive this disease, you had to be an eternal optimist and very aggressive..." -Vince DeVita Dx 12/23/2013, IDC, 6cm+, Stage IIIC, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/15/2014 AC + T (Taxol) Targeted Therapy 3/16/2014 Perjeta (pertuzumab) Targeted Therapy 3/16/2014 Herceptin (trastuzumab) Surgery 7/10/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/28/2014 Breast, Lymph nodes Targeted Therapy 9/22/2014 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 11/17/2014 Zoladex (goserelin) Hormonal Therapy 1/31/2015 Femara (letrozole) Dx 1/7/2016, IDC, Stage IV, metastasized to brain Targeted Therapy 1/14/2016 Verzenio Radiation Therapy 7/27/2016 External: Brain Targeted Therapy 11/15/2016 Tykerb (lapatinib) Dx 3/23/2017, IDC, Stage IV, metastasized to liver Chemotherapy 3/28/2017 Xeloda (capecitabine) Chemotherapy 8/29/2017 Taxotere (docetaxel) Radiation Therapy 2/27/2018 External: Brain
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May 8, 2018 01:20AM Becs511 wrote:

Hi there! I had a total of 5 questionable areas but only 2 were in “safe to operate” areas. One was 100% necrosis and the other was about 85-90% necrosis, with the remaining percentage being active tumor. But it was enough that they were able to get a pathology from it and confirm it to be triple positive. They are now working under the assumption that the three remaining areas are mostly necrosis with some residual active cancer. The other positive thing about surgery in her2+ disease is that it can open up the blood brain barrier enough that traditional Herceptin can pass. So I will have two Herceptin infusions and then my next brain MRI in 6 weeks to see what’s going on

Age at DX: 32. Childhood Leukemia survivor. Triple Positive mets and Triple Negative at the same time! Dx 5/5/2014, IDC, 5cm, Stage IV, mets, ER+/PR+, HER2+ Targeted Therapy 5/22/2014 Perjeta (pertuzumab) Chemotherapy 5/22/2014 Taxol (paclitaxel) Targeted Therapy 1/16/2015 Kadcyla (T-DM1, ado-trastuzumab) Surgery 6/17/2015 Prophylactic ovary removal Dx 7/1/2015, IDC, Left, ER-/PR-, HER2- Chemotherapy 7/20/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx 2/2016, Stage IV, metastasized to brain Radiation Therapy External: Brain Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine) Chemotherapy Other
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May 8, 2018 06:43PM Bad_At_Usernames wrote:

Wow, the neuro team initially was so sure it was progression only. That makes me hopeful that my paretial lobe tumor that regrew rapidly is necrosis or a mix instead of pure cancer. Since they were finally able to biopsy the brain mets and discern that they are +++ instead of - - - will that help open you up for clinical trial targeting the brain???

"...to survive this disease, you had to be an eternal optimist and very aggressive..." -Vince DeVita Dx 12/23/2013, IDC, 6cm+, Stage IIIC, Grade 3, ER+/PR+, HER2+ Chemotherapy 1/15/2014 AC + T (Taxol) Targeted Therapy 3/16/2014 Perjeta (pertuzumab) Targeted Therapy 3/16/2014 Herceptin (trastuzumab) Surgery 7/10/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 8/28/2014 Breast, Lymph nodes Targeted Therapy 9/22/2014 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 11/17/2014 Zoladex (goserelin) Hormonal Therapy 1/31/2015 Femara (letrozole) Dx 1/7/2016, IDC, Stage IV, metastasized to brain Targeted Therapy 1/14/2016 Verzenio Radiation Therapy 7/27/2016 External: Brain Targeted Therapy 11/15/2016 Tykerb (lapatinib) Dx 3/23/2017, IDC, Stage IV, metastasized to liver Chemotherapy 3/28/2017 Xeloda (capecitabine) Chemotherapy 8/29/2017 Taxotere (docetaxel) Radiation Therapy 2/27/2018 External: Brain
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May 8, 2018 10:31PM Becs511 wrote:

BAU - While it may not be conclusive, can you ask for a brain pet-scan? They are done just like a typical one, the settings on the machine are just tweaked a little. I had one and it showed no uptake (so not conclusive cause there was/is minimal active disease mixed in with the necrosis). But if it truly is significant progression and not necrosis, it could help your docs to differentiate.

Unfortunately, I’m not a candidate for any her2+ clinical trials because I still have a second active primary cancer (which is contained to my breast) that is triple negative. So my triple positive mets and my stage 2 triple negative diseases excludes me from any clinical trials that are based on specific subtypes. Since I need treatments for both kinds, I’d screw up any research data or outcomes..

Age at DX: 32. Childhood Leukemia survivor. Triple Positive mets and Triple Negative at the same time! Dx 5/5/2014, IDC, 5cm, Stage IV, mets, ER+/PR+, HER2+ Targeted Therapy 5/22/2014 Perjeta (pertuzumab) Chemotherapy 5/22/2014 Taxol (paclitaxel) Targeted Therapy 1/16/2015 Kadcyla (T-DM1, ado-trastuzumab) Surgery 6/17/2015 Prophylactic ovary removal Dx 7/1/2015, IDC, Left, ER-/PR-, HER2- Chemotherapy 7/20/2015 Carboplatin (Paraplatin), Gemzar (gemcitabine) Dx 2/2016, Stage IV, metastasized to brain Radiation Therapy External: Brain Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine) Chemotherapy Other
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May 10, 2018 07:03AM Odinsmom26 wrote:

Hi, I guess I am part of the very exclusive "Under 40" Club as well.

I was first diagnosed at 29 and then re-diagnosed at 36. Definetly not how I thought my life would play out, went to start a family and before I could do that I had to deal with Stage 3 Breast Cancer, beat that and then went to start a family again and found out my cancer was back and this time it was in my bones, my femurs, hips, pelvis, tail bone, shoulder, lung, and skull. So here we go again fighting this awful disease and hopefully we will be able to start a family at some point.

Thanks.

"Be the Change you wish to see in the world." ~Ghandi Dx 6/20/2011, IDC: Papillary, Right, 5cm, Stage IIIB, Grade 2, 9/11 nodes, ER+/PR+, HER2- (FISH) Surgery 7/10/2011 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 8/3/2011 TAC Radiation Therapy 12/4/2011 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 8/28/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 2/6/2018, IDC: Papillary, Stage IV, metastasized to bone, ER+/PR+, HER2- (FISH) Surgery 3/11/2018 Targeted Therapy 4/2/2018 Kisqali Hormonal Therapy 4/2/2018 Femara (letrozole)
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Jun 18, 2018 10:21PM pink36 wrote:

Will you give me the name of the facebook group

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Dec 8, 2018 01:32AM illimae wrote:

So sorry! I forgot get back to this. The Facebook group is called “Living with stage IV metastatic breast cancer under 40” and it’s a closed group but should come up in a search.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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