Just got diagnosed...!

Pixiepixie · August 2016

Hello to all you incredible women. I am new to the stage IV forum and wanted to meet you all and build up my support network for what is going to be a challenging time for my family and I.

I was initially diagnosed back in 2014 whilst 22 weeks pregnant. I did all the usual stuff, masectomy, chemo, rads, tamoxifen and like so many it has come back in my liver and bones.

Firstly I am okay, I didn't go into shock because I really knew at the bottom of my heart it was back so the scan results just confirmed what I knew already. The hardest part has been telling my family. So I have a few questions which i would be so grateful if anybody could answer...

- For those of you with young children how did you cope? I have one miracle baby who is 21 months. Too young to understand any of this (a blessing I think)

- my cancer is almost 100% hormone receptive. Am I likely to be started on endocrine therepy or chemo? I don't want to do aggressive chemo again. My choices are to live not fight. I know time is short but that's why I feel it's more important to not do any treatment that will mean I am unable to enjoy spending time with my little boy (plus I look really odd with no eyebrows!).

- I'm turning 35 in a couple of weeks. Anyone else a similar age to me with a terminal diagnosis?

I meet with my oncologist on Tuesday to discuss treatment options. I always feel better once I have a plan. We really want to cram in a few holidays. Has anyone else successfully travelled whilst on meds? I'm not taking backpacking... Just see some countries I've always wanted to visit with my beautiful family.

Much love xx

Becs511 · August 2016

Hi Pixie. I am sorry to have to be the first to welcome you to the Club Mets. We have the best members, but the worst initiation ever. Somehow the best things in life, like your baby, always seem to happen at the worst possible times (and vice versa). But he will be a huge motivating factor for you to keep pushing through as best you can.

To answer some of your questions, you and I are exactly the same age, although I am single with no children of my own (I do have a 16 month old nephew who I consider to be mine though). I turned 35 in May and am now a slightly over 2 years post my stage 4 diagnosis (diagnosed with mets from the start 6 days before my 33rd birthday). While the number of women here in our age group is relatively small, there is a thread for the under 40 set. It tends to be fairly inactive though, which is great. It means we are still out and about, living our lives. However, it, as well as the rest of the Stage 4 boards are great places to come, connect, vent, and share with others dealing with similar realities. We also enjoy and celebrate, and take pleasure in all of the good things going on each other's lives.

Since my diagnosis, which as of February of this year, also includes brain mets, I still continue to work full-time, maintain an active social life, and travel. While breast cancer in our age range tends to be more aggressive, our bodies also tend to rebound faster. Since you specifically asked about travel, it has never been an issue for me (just make sure you clear it with your doctor first and get travel insurance just in case). Over the last two years, I have taken several international cruises, a week long road trip, a father/daughter Disney World long-weekend, and an amazing 10 Hawaiian adventure of a lifetime. I also have several other trips planned for the rest of the year (Sun Valley, Idaho in October, Canada and Washington, DC in November, and Denver in December). One of my life goals has always been to spend time in all 50 states, something I will achieve by hitting up Denver over New Years! I can't wait to be a member of the rare 50 state club, something that some US presidents haven't even done!

The initial diagnosis is always a shock, and honestly there will be days where cancer is literally the only thing you can think about, but as time passes, a sense of your new "normal" will kick in and you will be able to focus on other things in life. As weird as this sounds, sometimes I actually just consider doctor and treatment appointments as errands I have to run. Part of a my daily routine. LIke okay, today I'll go to work, then swing by the doctor, then go to the grocery store...

Having a solid treatment plan in place that both you and your doctor(s) are comfortable with also helps. Getting started is always the hardest part.

Please feel free to private message me anytime you want, and keep us updated as your plan starts to take shape. Here is to happier and healthier days ahead for all of us!

susan_02143 · August 2016

Pixie,

I am not any of the things you are looking for.... I am older [though I was 35 was the cancer started to form in my body], my child is grown and now has her own child, my hormone percentage is around 5%.... but, for all the lack of commonality, I just wanted to take a moment to let you know that I am very glad that you found us.

Breast cancer proves time and time again that life is not fair. I am really sorry that you have joined our group.

Once you have a plan, it might get better. Or you might need 6 months for it to get better. Either way, build a village to help with your baby. Accept offers of dinner anytime they are made. If you can afford it, pay someone to help clean your house. Find a sitter and have the most amazing night out to celebrate your birthday.

I am now 6 years post-mets. I am very lucky. I hope that you are just as lucky!

*susan*

Kandy · August 2016

So sorry to have to welcome you to our elite group also. I am also older than you, cancer just sees no boundaries on fairness. I hope you feel better once your treatment plan is in place. Thoughts and prayers are with you.

Anonymous · August 2016

Hi. I am also young. 28 at original diagnosis, 30 at mets, 31 now. Travel is totally possible! I thankfully did a six week backpacking trip with my hubby right before my Stage IV dx, because now I couldn't be away that long (Zoladex shot every four weeks plus I'll probably restart Herceptin soon). But I still plan to travel - husband and I are planning on either a Europe or Carribean vacation over the winter. Even though I wasn't Stage IV last time I had a fairly full pill bag and had no issues at airports

Bluemnm · August 2016

Hi Pixie,

Welcome to our group. I was diagnosed at 35 and will be turning 38 in a few months. I am 96% ER positive and have responded well to my treatment. I recommend checking out https://community.breastcancer.org/forum/8/topics/... for a copy of BestBirds guide to metastatic cancer. It is very helpful for discussions with your onc.

In regards to travel I have taken many trips since my diagnosis, I just got back from an anniversary trip to vegas/grand canyon. So travel definitely is possible. I hope all goes well with your onc appt!

Sarah

Groovywilma · August 2016

Pixie,

Just wanted to say hi and welcome (though we all hate having to welcome new people). I was 36 at my initial diagnosis of stage iv and I'm 41 now. Just got back from an awesome Rhine River cruise and a few extra days in Amsterdam. My doctor has the great outlook of making sure my treatment doesn't interfere with my travels if possible. I have continued to work throughout treatment because I have a job I like with some flexibility and a lot of understanding. I only started chemo this year because I was able to do the anti-hormonal treatments for a while that were very effective for me. I wish you the best of luck! You can definitely still LIVE and enjoy life. You'll certainly have challenges, but I hope you do great!

pajim · August 2016

Pixie, welcome! Yes you'll be started on hormonal therapy. Probably an aromatase inihibitor (possibly plus Ibrance). Whilst I don't want to disrespect the women who have nasty joint pain on AIs, it's really an easy treatment.

I'm older than you (48), but I'm 3+ years into this. Work full time. This year I've been on so many airplanes [mostly for work] I'd like to stay home for a while, except that hubby and I are off to Italy next month for vacation.

There is an adjustment period with a mets diagnosis. Once you get used to the idea that you're not going to die [right away], you'll find life can be almost normal! One thing that helped me was to realize that I'm not going to die tomorrow. Or next week. Or even next month.

And congratulations on your son! Be a Mom. Be a wife. Be a friend. Live your life.

zarovka · August 2016

To my utter shock and dismay, chemo was not the first line treatment for my metastatic hormone positive breast cancer. I am on letrozol and ibrance. This is no walk in the park, but my life is approaching normalcy. It's a different normal with lots of doctor visits and more sleeping. I feel exhausted and disoriented and only half here on this protocol much of the time. This is very frustrating for a type A, juggling 100 things and getting all done person. I could not imagine holding down my former job, but many many women do work. Although I am not the person I was, my life is intensely family focused focused and I travel and take care of myself and my family pretty well and I am very happy.

And don't write off backpacking. Exercise is extremely important to fighting cancer, controlling side effects and generally thriving despite the nonsense ahead of you ....

The hardest thing, sometimes, is having a reason to keep going through the diagnostics and treatment. Those of us with families are blessed in that respect. We have no option. We have to make it ...

Finally, your cancer may have held off just long enough to put you in a good position. There are new treatment options coming on line all the time now. It's pretty confusing and it will takes months to get a handle on treatments. However, the first line treatments we have now are pretty well defined and can work for a long time. I expect you will have plenty of time to understand the treatment landscape. Bestbird's guide, noted above, is the best survey of current MBC treatment. Read it. Then read it again. Then read it again ...

Welcome. We are a realistic but hopeful bunch. We are all fighting hard and we intend to die of something else.

>Z<

tinyturtle · February 2018

Hi PixiePixie --- I just turned 41 this January and was diagnosed last Summer. The closest MBC support group was like 45 minutes away and when I got there -- everybody just stopped and said "We just have to know how old you are?" I'm an artist and I probably dress like a teenager to some. I did meet another artist there -- and she was diagnosed at 45 and has been at it for 7 years! That gave me a lot of hope.

My biggest issue is menopause -- I've been having rage, sleep issues, sweaty, and I have always slept in until 10 or 11 and am now waking up with the sun -- hot flashes make my eyes roll back in my head.

What's cool though is I have been waiting my whole life to be an old woman -- with crazy outfits and no longer caring about what anybody else thinks. My friend reminded me that I can be 80 at any age and I have become more direct, and I'm buying those more flamboyant clothes.

Some mornings I wake up crying and then the next day I'm happy about how this really put everything that mattered to me in close perspective. If only I could have been living like this my whole life. Some days it is super hard when I'm fatigued and confused -- here I am with all this free time and strong sense of self and I can't do anything at all but lay in bed.

I think I've learned that I have that new older woman role in life -- I'm mentoring young artists like crazy. And for some reason the wisdom coming out of my mouth even surprises me.

Just got diagnosed...!

Comments

Categories