Ladies in their 30s?
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Dani, for me at least, the bad taste and burning went away after day 10 give or take. My appetite was the worst after my first infusion, but a little better after consecutive infusions. I drank a protein shake almost every day to make sure I was getting some nutrition. How are you doing otherwise?I had my BMX yesterday, and my nodes that were previously full of cancer tested negative. I'm hoping my pathology report next week will show a complete response to the chemo as well. You're on a great treatment regiment. Just imagine those tumors shrinking and the cancer being obliterated! And congratulations on your upcoming marriage!
Xo,
Eri
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I'll be turning 39 next week. I was diagnosed a few weeks ago with mets to my sacrum. I'll be starting Letrezole and Ibrance at the end of the month. Nice to meet you all - sorry we all have to be, though. Hopefully our treatments kill the cells and keep us around for a LONG time!
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Hello ladies, Good morning/afternoon, I wish you all much love!
Mommy Erin,
Thank you for the experience help!
I am having some skin problems now, I've started breaking out and my face, especially around my neck and chin are the worse. I've never had a bad completion, I am wondering what else I can do about this. I am using a daily cleanser now, trying to help clear it out, even using my daughters acne treatments, it just doesn't seem to be working, and its itchy, flaky skin. My scalp is also starting to be flaky, I've tried special shampoos.My oncologist mentioned it was the Taxotere, but didn't offer any solutions.
Any suggestions?
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Had anyone ever attended this
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Metster Mom: no, have never heard of it.
Hello ladies, Good morning/afternoon, I wish you all much love!
Mommy Erin,
Thank you for the experience help!
I am having some skin problems now, I've started breaking out and my face, especially around my neck and chin are the worse. I've never had a bad completion, I am wondering what else I can do about this. I am using a daily cleanser now, trying to help clear it out, even using my daughters acne treatments, it just doesn't seem to be working, and its itchy, flaky skin. My scalp is also starting to be flaky, I've tried special shampoos.My oncologist mentioned it was the Taxotere, but didn't offer any solutions.
Any suggestions?
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Dani- Sorry for the delayed response! I had horrible acne as well following 3 of my 6 treatments and mild acne following the other 3. My MO wrote me a prescription for doxycycline and that helped a lot! Definitely mention this to your Dr.
Metster-Mom- So sorry you're joining us! I hope treatment goes well for you!
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Hi ladies,
First, I wish this forum went most recent to the oldest, so it is easier to see if the thread is active or not...
A little bit about me. I'm 38 years old and just starting round three of treatment... but first, a little about me. I am the mother of 5... ages 15, 14, 12, 6, and 3. I'm a nurse by trade, but teach medicine to high schoolers. I'm an actively member of my community and continue to stay active even through all my therapies.
My original diagnosis was in 2009. I found a lump 2 weeks before my 30th birthday. I was diagnosed with Stage III Grade 3, IDC. After undergoing a bilateral mastectomy and a lymph mode dissection (2 days later). I had 6 cycles of Taxotere and Carboplatin as well as a year of Herceptin. After finishing my chemos, I was started on Tamoxifen. This cause don't many symptoms that had to be counteracted by other meds. Within 6 months, I was classified as Toxic and Tamoxifen was listed as an allergy. No new therapy was started.
I was blessed to have my two youngest children following therapy. My tumor markers remained negative and I didn't have any symptoms. Life was grand. Fast forward to the summer of 2016, I injured by back, it got better, injured it again in November, the pain just wouldn't go away.... I asked my chiropractor for X-rays as I had feared relapse in my spine. Radiologist read the X-ray as negative for tumor or fracture, just degenerative disc disease. I continue with my therapies. I also had my routine (every 3 year) breast MRI done. Questioned why contrast wasn't being used..... My question was blown off. Results, no axillary adenopathy, unable to visualize chest wall due to no contrast.
February I found a swelling on my left clavicle, PET Scan and MRIa later, I was diagnosed with Mets of the bones (spine, sternum, pelvic, long bones of the arm and legs), liver, adrenal gland, mediastinum (area around the heart), and lymph nodes throughout my body.
Started chemotherapy of Taxotere, Herceptin, and perjeta. Finished Taxotere after having 2 PETs, NE of active disease. Back pain retuned almost immediately. Started going through many Radiology tests again. Bone disease found to still be active or becoming active again. Herceptin and Perjeta and oral therapies stopped.....
Started new therapy of Kadcyla on 8/28...
Just hoping my oncology team can get a hold of this spread and allow me to be there for my children for decades to come.
My husband doesn't handle flares too well. He lives with the fear of what if and how he is going to handle 5 children. I live in the hear and now and I don't allow this diagnosis to slow me down. I have to find a happy medium for my husband, but not sure how to get him to understand where I'm coming from. He is good, as long as he knows that my treatment is working, and I'm doing better.
Triple Positive - BRCA negative (even though it's in the family)
Angela
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Dani
I've been on Taxotere twice now. It does dry out your skin and mucous membranes. I would push your fluid intake (water).
The acne issues may be hormonal changes as Chemo does stop production of hormones. I would continue what you are doing, and hopefully it clears up soon. I remember having a lot of acne issues with my first go around with Taxotere.
Best of luck
-Angela
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Angela, we're sorry that you have to be here... but wanted to say welcome! We hope your treatment goes well and you and your family can celebrate many years of NED!
Best wishes,
From the Mods
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Angela, You're putting off a strong energy, I can't imagine you wouldn't having your 5 children! I'm sorry you're back, Please keep us updated, My families heart goes out to you! Thank you for the info on the acne, Erin too.
I've been pushing the fluid best I can, water is still just disgusting, chemo flu makes it's hard to drink it plain among other things, so I flavor it, trying different types until I find one that doesn't taste terrible.
I had my second out of 10 treatments week before last. My treatment is every 3 weeks. I did notice the symptoms seem to have eased up a bit except I have more nausea this time, totally random, no rhyme or reason as to when it happens and my brain is unfocused, I sometimes forget what I'm saying or have trouble carrying a conversation without pause to find the next words. Acne is easing up, hair is gone, all but a tiny few patches remain, scalp is so tender and itchy too. My family says what a nice round dome I have.
My spinal pain has not eased up at all so they've called for an MRI this Thursday. Good news is I'm finally walking again, past two weeks.No more walker either. It's been a long 2 1/2 months since my hip broke. Bad news is that I can't stand up straight without extreme pain and I can't walk but 10 feet at a time before I want to cry, not from hip but from back. I'm not terribly excited about getting my spine imaged, But I know I'd rather know than not know. It may be an easy fix (haha...). Positive thoughts!
I feel more comfortable posting here than in the bone mets thread, I just haven't been here long enough to know everyone's stories and feel like I fit in (I don't mean diagnosis stuff, I mean personal life stuff).
I have been trying to be more active though, getting out when I have the strength And courage, knowing that the next day I will be wiped from fatigue. My counts aren't very good this week though, I am monitoring a fever closely. I'm a little worried about my sister coming to stay with me for a few weeks but she is being very careful not to engage people who may be ill before she comes-I love her and can't wait to see her all the same!
. This past Saturday, 6 am sunrise, Baker Resevoire, Veyo , Utah, I have the desire, my boat and I have been inseparable since I was 15. I took enough pain medication to be able to accomplish this gentle paddle to the middle of this lake, and I'm okay with that. I refuse to give in to this disease. Hell, I worked on a broken hip for 3 months before I knew, I refused to be broken at all. I have plenty of padding *wink*!!
WE ARE TOUGH STUFF LADIES, I love you all
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-10 days ago. Eyebrows are thinning now >:-(
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Dani,
I hope your MRI will give them some answers. It can be very difficult not knowing why pain is somewhere or why it isn't improving. But being able to walk better is encouraging.
Love your pictures!
Angela
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Dani- Beautiful pictures! So glad to see you're staying positive and walking again.
Angelamay88- So sorry you're joining us! I love your positivity though! My diagnosis has been hard on my husband as well, especially because he lost his mother when he was 28. I pray your oncology team gets this under control
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can I join in lol!
26 year old male now 45 with bc bone mets for the last 12 months.
Men have breasts too...
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Dear jcempire,
Welcome to the community. Actually we have an entire forum for men with breast cancer. You can find it at Male Breast Cancer. check it out. the Mods
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Hi there! Gee where should I start. I was 34 been married for a year at the time when I noticed a lump in the shower and the next week which I had an ob appointment lined he recommended a ultrasound but they couldn't see it so mammogram. I had surgery consult and biopsy and found out I had breast cancer. I had a double mastectomy and luckily I did they found Stage II IDC in my right and Stage 0 in my left. Had chemo (4 rounds) and during that time my marriage imploded. Went on tamoxifen and moved to TN to be closer to family. Took time from working to do my breast reconstruction. Got a new oncologist and we had a good treatment plan. Skip forward to 2 years ago when I met my now fiance. Had my last breast revision (implants) this jan. In may my shoulder was bothering me I asked my plastic surgeon and my primary and they recommended PT. Three weeks later it got worse and they thought I had costochondritis. I let my oncologist know she did a ct and found a tumor in my back (T-4). Had an MRI and they called me and told me to come back and to the ER immediately (I live an hour-hour and a half away). So on August 14th the day before my 38th birthday this year I had a Corpectomy on my t-4 mainly because my tumor had eaten away at it and had spread in other parts (T-3, T-7, L1, L4, S1). Plus had t-2 to t-8 fusion with posterior rods, pedicle screws (titanium yay) and a t-3 to t-5 cage put into my back. I found out I had Stage four on the 31st. I am going to have my ovaries removed (I never had kids and well can't now) in Dec. I have to have bone scans every three months, I am on Ibrance with letrozole (been on the letrozole with zoladex for a bit). Was doing xhgevia shots but we are going to be doing an infusion for my bones since I had a compressed fracture in T-4 which means a port for me (I never had a port when I had chemo yeah I know) getting put in same day as ovary surgery. My soon to be spouse has been awesome and supportive and I am still having a rough go of it emotionally and everything. Plus the stress of all the appointments and followups. I am luckily on medical leave but filed for Social security disability and maybe retiring soon. I hope to be more active and get to know some of you all since this all new for me. Been checking out a lot of the threads and contributing as much as I can. I am walking and being active where I live there really isn't many support groups for ladies like us and I hope here I can find some better ones. Thanks again.
Chani
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Hello to all of the Newbies here!
I was diagnosed de novo the week of my 33rd birthday, and while it has been a roller coaster, I am still here 3.5 years later.
For all who are newly diagnosed, as weird as this sounds, it actually does get easier in a lot of ways, with time. You just sort of get used to having to deal with all of the anxiety, changes of treatments, side effects, appointments, loses, and wins. You feel every pain, but feel every joy and happiness more than before. You will find your own path and learn to trust your instincts when it comes to what moves (medically, personally, professionally, etc.) are the right ones for you. You will forget that not everybody doesn't have an oncologist on call, know billing codes by heart, and has a VERY different definition of tired than you do. But that is the best advice I can give...
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As of last Friday I have now joined the club of Stage IV beauties. They are still in the process of biopsies and ruling out other met locations. My initial diagnosis was June of 2013 age of 33 (now 37), no staging at the time. They did neoadjuvent Chemo, a bi-lat mastectomy, staged at that time as 2b as the tumors were still present and large, no lymph node involvement after chemo, though, then radiation with Kadcyla (hercepting and DM1). As of last week (12/1/2017) mets were found on my liver. Still waiting for results of a Chest, ab, pelvic CT for evidence of other mets. Getting ready to start back on treatments. Recommendations and advice are greatly appreciated! Prayers are, as well.
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Well, I'm in the 30s w/ stage 4 group too, 6 years out from my inital diagnosis. It makes me sad to see that some of the ladies from the start of this thread are no longer with us. My heart hurts.
I was stage IIB Jan 2012 at 28 and did the whole lot of treatment thrown at me. My love and I preserved 10 embryos before chemo, got married after 10 years of togetherness, bought a house, vacationed and tried to move forward as much as we could. I dealt with PTSD and major anxiety for about 2-3 years post treatment.
In 2016 I finally felt like I was getting my life back and feeling grounded and 'safe' to trust my body again. Even though I knew breast cancer could return at anytime, I was JUST done with letting fear rule me. So I stopped hormone therapy in January 2017 in hopes to try for a family this past Summer.
Before 'graduating' from care with my MO to my family doctor we decided to do a CT in July to ensure all was good. We were devastated to find out that the cancer had set up camp in my lung and mediastinum lymph nodes. This was on my 34th birthday 6 months ago. 'Happy' Birthday to me
Besides facing mortality at a young age, I have been most heartbroken about never carrying one of our children. Had I not had cancer at 28, we would have had a baby that year. I've been waiting ever since to bring one of our babies into the world. We had friends graciously offer surrogacy but then fell through sadly due to partners not being comfortable with it. For now we have been looking into surrogacy agencies alongside navigating our new reality with MBC. My hope, like you all, is to be here for a long time.
Much love and healing to you ladies.
xo
Ash
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Hello again ladies! Warm welcome to those and Sorry but happy you found us to the newly diagnosed.
Updates on the fly: I haven't posted anything for a few months, was just trying to get through the worst of the worst. I finished round 8 of chemo dec 29 2017 but remain on targeted therapies indef every 3 weeks.
My hip rebroke in Jan, unknowingly, asside from pain that never went away after first hip screw implant due to Mets. But then in Jan, I went from being able to walk unaided, To needed my walker again. Saw my original Ortho and voila: only thing holding the bone together was the screw and pins. Surgery to remove and replace with new total hip+joint replacement couldn't be schedule right away so I hopped along on broken bone for almost 5 weeks. Surgery was Feb 14. I am now almost 5 weeks out and am undergoing pt, just started out-patient.
Scans are looking good!! Lymph has shrunk to 2cm! Also, my breasts, both are shrinking at an incredible rate, both of them, no one had told me this was a norm under hormone blockers. Blood work is looking good, but they upped my dose of Herceptin and Perjeta. (Is it normal for oncologist to keep small things from their patients? To not scare them?)
My face has terrible acne, and my spine continued to shrink and the pain overall is still above 10+, but we are keeping an eye on the Mets in my lower lumbar. Up soon will be a brain scan to see if any Mets in upper spine or other related tumor cited that may be the underplaying cause of my muscle seizures, which are constant and occur everywhere throughout my body. The band aid they're using for now is Gabapentin, 300x2 a day. It seems to work most of the time but my muscle spasms/jerks/twitches have started returning lately. Getting this checked soon.
Echo came back looking good, close monitoring from here on out because of the Herceptin, and my already-known of heart disease ie coronary artery disease.
I'm feeling better over all? Less like dying and more like alive. Learning to walk is a true panic, 2 broken hips in less than 6 months, guess it would be!
Here's what I'm feeling: target therapy hormone suppression will begin to fail and we will switch soon, and we won't have to set chemo again for at least a year!!!!!
Coping with being slower than my family in everything, memory loss, hair loss and all that Jazz, is getting better. I'm still tired, is this because of the Perjeta and Herceptin? Did any of you still have nausea because of those two meds?
But back to the acne: what a pile of rotten dirty bananas that is!!! So, I'm being treated internally now after a month of trying all OTC and Proactiv treatments to no avail. I'm on Minocycline. Ever heard of it?
So here I am, on the wagon, hair re-growth is slow, feeling like a white and black silky thin-haired hedgehog. Eyelashes coming back (itchy as hell) and eyebrows are back.
Good luck and much love ladies!!
Any insight into the shrinking oftotal breasts and acne issues and still nausea even after done taking docetaxal/taxotere? Memory loss still an issue?
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My 38 year old daughter - diagnosed today. Two years after a Stage 1, Grade 3 Double Mastectomy. She is registered with
Imermanangels[dot]org
Colorado Sp[rings, CO
God Bless her. Why does he take the GOOD ONES?0 -
CancerDad, we're so sorry for what you're here, but glad you've found this wonderful Community and decided to join us. Finding out that your daughter has a disease like this must be a big shock, so we encourage you to check out our For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis forum to find other members who've been where you are right now. It's hard, we know, but you're not alone!
We look forward to hearing more from you and your daughter soon!
The Mods
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I haven’t posted for a while, and I’ve been thumbing through the forums to decide where to post my question. I’m stage IV, bone mets, grade 3 nodes, triple positive, dx at 36 last June 2017. I finished first batch of chemo in dec (16 week 8 rounds), am still getting Herceptin+Perjeta infusions every 3 weeks just no more taxotere, but on my last scan, a week ago, my nodes have increased in size, so my doc wants to start me on Tamoxifen.
My question is, and I’ve read all the material but can’t find any place where ladies are talking about Tamoxifen in general,
Does it suck??? Can I refuse it?
My hair just started growing back, it’s getting darker, it’s getting thick, am I going to have to loose it all over again? I already look like a man. I don’t feel like there’s any part of me that is woman any more.
This isn’t a pity party, oh no, this is an all out rebellion shit fest.
It’s an all around shitty situation for all of us
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Dani, I think we all understand the frustration when it comes to changing medication, but cheer up, with triple positive, there are a lot of options for you. I noticed this thread is not the most active so I would suggest to ask your questions in other Stage IV threads. Bone mets topic has a lot of active members so you might want to start from there(link below). My cousin had tamoxifen for 3-4 year until it recurred last May. When it recurred, her PR changed from + to -. I don’t know if it means something but I just want to share our experience. Tamoxifen is not that bad, it’s very tolerable and it would NOT affect your hair at all. Please feel free to PM me for any questions
https://community.breastcancer.org/forum/8/topics/789492?page=725#idx_21727
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Hello everyone,
Warm greeting from Cebu, Philippines. This is my first post. I have been reading forum posts for the past few days. I just received my bone scan results, which shows lots of bone mets
I am still to discuss with my doctor the treatment plan.I was diagnosed in 2013 (@32 years old) with stage 3C Invasive Lubular Carcinoma. Not 37 years old. Went through all the treatments - Surgery, Chemo and Radiation. All scans were good after that until last week, when result of my CA15-3 markers tested high - 64. (Normal range as I understand it 0-30) I get tested every six months and results are usually 10 below. Bone scan today confirms the mets.
I have a 10 month old son and I am truly scared
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Hi KristineN-
We want to welcome you to BCO, although we're so very sorry for the circumstances that have brought you to our community. We certainly understand your fears, and we hope that being here and reading through some of these posts gives you hope and strength as you begin down this road again. We're all here for you! Please keep us posted on what you learn after speaking with your doctor.
The Mods
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Thank you very much for the warm welcome. It helps to connect with those who are going through the same thing (or have gone through it). I am not sure if there is anyone else who is from the Philippines, it would be nice to have someone close by. But everyone who is posting in the boards sound very nice and positive, I am sure I will meet a lot of new friends here.
Will post updates soon
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Hi, I posted this on Monday in a much more recent thread but just realised this one is 'sticky' so posting it here too.
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.
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mycellsmutated,I’m sorry that you are here but welcome. Although my cousin also has HR+, there are a lot of HER+ patients in the forum, so I’m sure you will connect to them soon if you visit often. From my understanding, there are a lot more mediacairons targeting HER+ in recent years, so it’s much more manageable now. Just need to be aware that HER+ tends to be a bit more “sneaky” that it could be more likely to travel to brain, which sucks but is not that bad as long as patient is treated and mornitored closely, so just visit your doctor and receive treatment and scans regularly, and pay attention to the brain mets symptoms. Also, find the medical team that you trust and try not to be scared too much. Hope you will connect to other HER+ patient and get well soon.
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Mycellsmutated: So sorry you’re here! I was diagnosed de novo stage IV Her2+ at age 30. I had 6 rounds of TCHP, surgery, radiation, and continued H&P every three weeks since, and I’ve been NEAD since July of 2017 (4 months after diagnosis). I’m doing great! Chemo sucks! Cancer sucks! But H&P are truly amazing when they work, so stay strong and positive. Come on over to the Herceptin and Perjeta thread if you haven’t already. We’re pretty active there.
Also, I recently came across this 2018 article (link below).It's very specific in the population studied: stage IV de novo Her2+. Super reassuring results as progression free survival and overall survival were both almost 100% at 10-years for those who achieved NED. Hang in there and feel free to PM. Stay strong!
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