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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 03:18AM

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 6/13/2017 Mastectomy: Left Chemotherapy 8/15/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/16/2017 Perjeta (pertuzumab) Targeted Therapy 8/16/2017 Herceptin (trastuzumab) Chemotherapy 9/7/2017 Taxol (paclitaxel) Radiation Therapy 1/5/2018 External: Bone Hormonal Therapy 1/6/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/3/2018 Prophylactic ovary removal Hormonal Therapy 4/5/2018 Arimidex (anastrozole) Hormonal Therapy 6/11/2018 Femara (letrozole)
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Apr 18, 2018 08:57AM 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) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) 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 10/19/2017 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 10:14AM 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 6/13/2017 Mastectomy: Left Chemotherapy 8/15/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/16/2017 Perjeta (pertuzumab) Targeted Therapy 8/16/2017 Herceptin (trastuzumab) Chemotherapy 9/7/2017 Taxol (paclitaxel) Radiation Therapy 1/5/2018 External: Bone Hormonal Therapy 1/6/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/3/2018 Prophylactic ovary removal Hormonal Therapy 4/5/2018 Arimidex (anastrozole) Hormonal Therapy 6/11/2018 Femara (letrozole)
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May 3, 2018 02:10PM 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 4, 2018 11:59PM 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 6/13/2017 Mastectomy: Left Chemotherapy 8/15/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/16/2017 Perjeta (pertuzumab) Targeted Therapy 8/16/2017 Herceptin (trastuzumab) Chemotherapy 9/7/2017 Taxol (paclitaxel) Radiation Therapy 1/5/2018 External: Bone Hormonal Therapy 1/6/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/3/2018 Prophylactic ovary removal Hormonal Therapy 4/5/2018 Arimidex (anastrozole) Hormonal Therapy 6/11/2018 Femara (letrozole)
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May 5, 2018 04:32AM 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 10:19AM - edited May 5, 2018 10:20AM 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 11:38AM 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 02:31PM 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 10/1/2016 Femara (letrozole) Targeted Therapy 10/14/2016 Ibrance (palbociclib) Chemotherapy 3/31/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 12/8/2017 Xeloda (capecitabine) Chemotherapy 2/14/2018 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 05:33PM 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 5, 2018 07:42PM 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 5/23/2014 Perjeta (pertuzumab) Chemotherapy 5/23/2014 Taxol (paclitaxel) Targeted Therapy 1/17/2015 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 02:20PM 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 05:43PM 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 3/5/2018 Perjeta (pertuzumab) Targeted Therapy 3/5/2018 Herceptin (trastuzumab) Chemotherapy 3/5/2018 TAC
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May 7, 2018 06:05PM 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 7, 2018 08:20PM 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 5/23/2014 Perjeta (pertuzumab) Chemotherapy 5/23/2014 Taxol (paclitaxel) Targeted Therapy 1/17/2015 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 01:43PM 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 05:31PM 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 5/23/2014 Perjeta (pertuzumab) Chemotherapy 5/23/2014 Taxol (paclitaxel) Targeted Therapy 1/17/2015 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 02:03AM 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 05:21PM pink36 wrote:

Will you give me the name of the facebook group

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Dec 7, 2018 08:32PM 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) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) 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 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 20, 2019 10:13PM - edited Feb 20, 2019 10:14PM by Melle83

35 years old 30yr old when I got stage 4.

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Feb 21, 2019 01:13AM Parrynd1 wrote:

Welcome Melle. Sorry your here but glad you are. Five years for youand going strong I hope.

Dx 9/4/2016, IDC, Right, 4cm, Stage IIIA, Grade 3, ER-/PR-, HER2- Chemotherapy 11/30/2016 Other Chemotherapy 2/22/2017 AC Surgery 5/18/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/15/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Radiation Therapy 10/5/2017 Whole-breast: Breast, Lymph nodes Dx 3/2018, IDC, Right, 5cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 3, 1/1 nodes, ER-/PR-, HER2- Radiation Therapy 5/24/2018 External: Brain Chemotherapy 6/28/2018 Other Targeted Therapy 10/1/2018 Avastin (bevacizumab) Radiation Therapy 12/28/2018 Whole-breast: Breast Chemotherapy 12/30/2018 Halaven (eribulin) Dx 1/29/2019, IDC, <1cm, Stage IV, metastasized to other, Grade 3, 1/1 nodes, ER-/PR-, HER2- (FISH) Dx 2/5/2019, 3cm, Stage IV, metastasized to brain, Grade 3, ER-/PR-, HER2- (FISH) Surgery Chemotherapy Other
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Feb 22, 2019 09:56AM chloesmomandcgswife wrote:

I am also a member of the under 40 club. I was first diagnosed with stage IIIB when I was 34. We found it spread to my bones 4 years later. So I am 38 with stage IV. Staying positive and getting ready to fight!

Dx 4/1/2014, IDC, Right, 5cm, Stage IIIB, metastasized to bone, ER+ Hormonal Therapy Hormonal Therapy Femara (letrozole) Targeted Therapy Verzenio Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Right; Lymph node removal: Underarm/Axillary Chemotherapy AC + T (Taxol)
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Feb 22, 2019 10:40AM B-A-P wrote:

I’m 31. Dx at 30. Brushed off for two years with symptoms bc of my age.

Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- (FISH) Chemotherapy 9/17/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/25/2019 Mastectomy: Left, Right Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 22, 2019 11:30AM goldie0827 wrote:

TOO MANY! ThumbsDown 


AKA - Sugar Lusty Heat! Hair pictures on my profile. DON'T LOOK DOWN ON ANYBODY, UNLESS YOU'RE PICKING THEM UP! Dx 3/27/2008, DCIS, Right, 5cm, Stage IIB, Grade 2, 2/2 nodes, ER+/PR+, HER2- Dx 7/2014, ILC, Right, Stage IV, 2/2 nodes, ER+, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Breast, Lymph nodes Surgery Lumpectomy; Lymph node removal Hormonal Therapy Arimidex (anastrozole)
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Apr 14, 2019 11:05PM - edited Apr 15, 2019 07:50AM by Mycellsmutated

Hi all,


Was just going to introduce myself but then ended up writing a whole essay so if you don't want to read it all, in summary: I'm 31, just diagnosed de novo stage IV through routine staging scans even though my lymph nodes appear clear: diffuse sclerotic mets all through my spine, ribs and more than a dozen spots on my liver. I've gone from randomly thinking I noticed a small lump on the side just over a month ago to a breast that is so big and hard and sore with a nipple gone from normal to flat to fully retracted and I absolutely can't wait for chemo to start tomorrow. Cancer is HER2+ and hormone negative, hence the rapid growth I guess.

-----------

Just over a month ago in my hotel room in Bangkok after a week jaunting carefree around Thailand and Laos, mostly in various bikinis (I would have noticed if something was weird with my breast!), something possessed me to feel the side of my breast and I noticed a small lump. I was returning to Australia a couple of days later and my GP only works Wednesdays and Fridays anyway so I made an appointment to see her as soon as I would have even if I'd been in Australia. She couldn't even feel the lump but did notice a 'thickening' compared with the other one. She gave me an ultrasound referral but said 'it's probably hormonal, wait a couple of weeks until after your period to see if it goes down before getting the ultrasound and then you probably don't even need to go if it goes away. In the 2% chance it's not just fibrocystic changes, it's 98% a cyst'.

Five days later, a few days into my period it was not going down and I couldn't deny how different and hard the breast now seemed compared to the other one. I Googled symptoms of breast cancer and the horror rushed through me when I realised the nipple was flatter than the other one. (I was fearing inflammatory breast cancer). The next morning I called and got an appointment for the ultrasound appointment the same day.

That day of the ultrasound was the worst - worse than any of the days that followed. It was the day I realised I had cancer even though they hadn't told me yet. I had previously had two ultrasounds on my uterus (all good) so I could tell something was wrong this time. I could tell by the subtle look on the sonographer's face. She was meant to only ultrasound my left breast but then measured something she had found with a ruler, did to the right breast too and then did both sets of lymph nodes. She told me not to get dressed while she went to consult with the radiologist. They said I need a mammogram (which was not ordered). While I was preparing for the mammogram in shock and tears (I knew full well this was not 'routine for dense breasts' - quite the opposite as ultrasound is better for dense breasts) the sonographer asked when I was seeing my doctor for the results. I said 'tomorrow morning at 11'. I saw her face and asked with horror 'should I bring it forward'? I knew from her face I had cancer. She suggested I call the clinic that very day.

After the mammogram they gave me the scan images and even though I knew I probably shouldn't, I sat in the glaring sun outside theultrasound clinic and looked at them. The starry mass/s were highlighted for me to see. I'd read enough to know that a benign mass didn't have 'spiculated' margins like that. i sat in shock at the tram stop.

My mum, who's not a big drinker, had always warned me not to drink too much alcohol because I might get breast cancer. When I said this to others they always scoffed: 'breast cancer, come on!'. Needless to say I was afraid to tell her. But I'm single and was suddenly terrified so I did decide to call her as I got off my tram stop because I was scared. She calmly said "OK, we're coming to get you" and they did. This evening was the worst of all, even as my parents picked me up in peak hour traffic and we slowly drove to my childhood home. I already strongly suspected (basically knew) it was cancer but didn't know 'for sure' yet. And I had just gone into the utlrasound expecting fibrocystic breasts, or nothing.

The next day (Wednesday) my mum came with me to the GP, who said "yes, you have cancer" (you know how you never forget that moment and the look they give you or how they say it?). They had found two tumours and other suspicious areas. Biopsy would be the next day just to get more information, but the scans were enough to confirm the diagnosis and refer me straight away to the cancer clinic (so I knew the scans were bad). Thank you to Australia's universal healthcare system, the fact that I have no health insurance was not a problem as I was directly referred to Peter MacCallum Cancer Centre: one of the world's leading cancer treatment and research centres and a PUBLIC hospital dedicated entirely to cancer. All my treatment will be free.

At the biopsy the next day the sonographers were obviously surprised to hear me say 'it hurts because I have cancer' because presumably most people don't get told they have cancer until after biopsy...

I got into the see the surgeon at Peter Mac the very next Wednesday (nice and quick) and she explained that being HER2+ I should respond well to treatment, and confirmed that they didn't find it in my lymph nodes. Also, the ultrasound had showed the tumours were only 1.6cm each (much smaller than they felt). She said "don't worry we'll get this". I would have four months of neoadjuvant chemo and Herceptin to shrink down before surgery. She was even talking lumpectomy! I felt more optimistic.

I had to cancel my trip to Thailand for when chemo was to start so after routine CT and bone scans I went to Byron Bay for a chemo-moon, ticking off my last Australia bucket list destination and thinking I wouldn't be able to drink alcohol for a year on Herceptin (I've since learned that's not true). I wish i hadn't spent much of that weekend blaming myself for causing my cancer with alcohol (I since discovered alcohol is not linked to HER2+, hormone negative cancer), thinking it was my last chance to drink alcohol for a year but also feeling guilty for drinking in case it was bad for the cancer, and worrying about losing sensation in my breasts and nipples following my ultimate mastectomy. Those concerns are now all irrelevant.

The next day, a week ago, I was to meet with the medical oncologist (MO) to receive the chemo regime my upbeat nurse had already told me I would get. That morning I got a call saying the surgeon wanted to see me first. I texted Mum saying 'it's not good, they must have found something on the scans - there's no reason for me to see the surgeon now and not at the last minute'. She said 'don't worry I'm bringing the lucky family wedding ring'. We went in to see the surgeon who had with her a different very serious and sympathetic-looking nurse (it turns out she's the one who specialises in stage four cases). I knew it was bad. The surgeon told me the scans showed that despite no lymph node involvement the cancer has spread through my bones and liver. Stage IV de novo. I don't think the wedding ring works.

So I saw the oncologist afterwards as planned but now the treatment was different, of course. Six months instead of four months of chemo, a different chemo and surgeryis off the table. PS: The MRI showed it was not two tumours but one 2.6cm tumour and at last 8cm of DCIS - no wonder my breast feels like a giant rock and I bet it's bigger now. Not that any of that matters now.

My workmates were all so worried and nice when I sent them my first email sounding so upbeat and everyone was glad that I had 'caught it early' and also that I could still go Thailand (which I briefly thought I could). Although I've told my bosses and HR about the stage 4 diagnosis, I now have to tell them all that it's already spread and is basically the worst possible situation. I didn't catch it early.

On Saturday night I broke down again because in just the last week ALONE my nipple has gone from flat to retracted and the whole breast is extremely dense. In Byron Bay I was comfortably wearing an underwire bikini top and now I can no longer comfortably wear a bra. I don't need a medical degree to know how fast this thing is growing.

I met with my MO again today and I asked where the mets was and probably shouldn't have: it's a significant amount of diffuse sclerotic mets all through my spine and ribs and more than a dozen spots on my liver (they didn't count them all).

I said how fast it is growing and he just said "yes, let's get you started". I know, I wish we could have started weeks ago! (but realistically couldn't have gone any faster because it's taken a month just for all the scans and diagnostic appointments). He is at least somewhat optimistic that being HR- and HER2+that the cancer could respond well to targeted therapy but as you ladies know, it's the way the cells have had to mutate to move around the body that's the terrifying part I have to explain to people. I've decided to tell the rest of my work team now and explain this to them. I already had my CEO (who my boss must have told) come and say well-meaning but awkward things to me in the middle of our open-plan place office so that other people definitely would have overheard, and I had to explain to him all the usual stuff that treatment never ends and why it's so hard to treat and why it becomes resistant to treatment (this isn't info from my oncologist but from the extensive research I've done myself as I'm a researcher by nature). So I've decided to email at least my team with all this stuff to pre-empt the frustrating and ignorant questions.

I'm really glad that I don't have kids to worry about, and having been single for a Guinness World Record-breaking eight years I've been doing nothing but travel, travel, travel on many short trips (because being single I have nothing to keep me around at home and noone to coordinate with!) with no thought for saving for retirement. I was feeling a bit guilty about that last year (travelling instead of saving for retirement) but imagine how glad I am about that now! I always jokingly thought 'life is too short' to worry about saving for retirement instead of living for now (e.g. my mum's best friend's 24 year old son died in a motorbike accident) but I never seriously thought it would be true in my case. And now I can't even get travel insurance!

PS it's all a cosmic joke because there's no breast or ovarian cancer in my family and barely any other cancer. All my grandparents lived to be at least 93 and my parents are 70. We're not telling my 90-something-year-old Nan: imagine outliving your granddaughter whom you are over 60 years older than?

As you guys probably know it's frustrating thinking I couldn't possibly have gotten this any earlier because they don't exactly mammogram you at 30, and I never checked my breasts because that's just not a thing at my age. None of my friends do either, I asked them. I still don't know what possessed me to find that lump in Bangkok but the cancer was almost certainly already stage 4 by then.

So I know i should be dreading the side effects of chemo but I can't can't wait for it (and the targeted therapy) to start. I can't wait for tomorrow.

PS: not many HER2+ HR- ladies on this forum so would like to connect with any of you. Seems like most people here are HR+ which gives you lots of hormonal treatments that are not available to me.

Dx 3/20/2019, DCIS/ILC/IDC, Left, 2cm, Stage IV, metastasized to bone/liver, ER-/PR-, HER2+ Targeted Therapy 4/16/2019 Perjeta (pertuzumab) Targeted Therapy 4/16/2019 Herceptin (trastuzumab) Chemotherapy 4/16/2019 Taxotere (docetaxel)
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Apr 15, 2019 12:44AM illimae wrote:

Hi mycellsmutated, you story is a familiar one, mine also grew fast, seemingly overnight. I’m now 2.5 years out and stable. Feeling pretty good except for the joint pains from estrogen suppression but hey, more good days than bad 🙂

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) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) 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 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 15, 2019 08:56AM IchangedMyName wrote:

hi friends!

I sorta fit in as I was diagnosed on my 40th bday stage 4 de novo. It is now 2 years later and I am “stable.” Due for scans soon and it always makes me nervous. Going to wait until after my vacation in May to have them so I can just enjoy myself. This disease is a mindf@$k!

Hope everyone is feeling okay!

Hugs, Philly
💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Apr 15, 2019 11:34AM ADDK wrote:

Mycellsmutated, I´m also HER2+ only, and much too old for this thread, but just wanted to say that I´m so sorry that you have joined the club nobody wants to join at such a young age. I have worked fulltime (desk job) all through treatment since my stage II diagnosis in February 2017 except for two days when the chemo knocked me out, and four days after my mastectomy/tissue expander placement. I´ve found the HER2+ targeted drugs very doable. It will take some time for your "new normal" to sink in, but hang in there - you can do it!

Dx 2/10/2017, Left, 4cm, Stage IIB, Grade 2, 3/16 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 2/24/2017 AC Surgery 8/8/2017 Mastectomy: Left; Reconstruction (left): Tissue expander placement Dx 6/10/2018, IDC, Left, Stage IV, metastasized to other, HER2+ (FISH) Targeted Therapy 10/26/2018 Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy 2/6/2019 Herceptin (trastuzumab) Chemotherapy 2/6/2019 Xeloda (capecitabine) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Perjeta (pertuzumab)
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Apr 15, 2019 02:15PM Summerspring wrote:

hi there. 38 at diagnosis of stage I idc TNBC oct 2017. 39 diagnosed 2/2019 stage IV to my Lymphnodes I have two young children. Have had 3 treatments and one scan which showed the tumors shrinking. Still in shock.

Sending my best to everyone.

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