Newly diagnosed at 31

Warian_7

I'm so pleased to have found this site as it has helped me realize I am not alone and all the strong, beautiful women on here. A few weeks ago i was diagnosed with stage 4 breast cancer that has spread to my bones. I've been in a state of shock, how does this happen to a 31 year old with no family history of breast cancer ? I am concerned about what the future holds as far as my life expectancy-I do plan on fighting this and won't give up but I feel hopeless as the same time. I feel as though my dreams of starting my own family and having kids have been shattered. Has anyone had similar stories ? What was your experience like in regards to having children? Also, why does it seem like some of these doctors don't care ..l went to see a surgeon about possible removal of my right breast where the cancer is. I asked what about doing the other breast, he turns to me and says there's is no point, you have stages 4 that is incurable and that my time here is limited. I broke down ..left his office wondering can theyalk to you like that ?! Who says that. AnywU I called my general doctor and demanded to be seen at UCS in hopes of finding a better team that actually cares and has compassion for their patients and get a second opinion. My oncologist is recommending hormone therapy first and see how that works and going in later with chemo. He did tell me i could do whatever order I prefer. I’m just confused and need some direction with that. Should I do the hormone therapy first or chemo ? Does it really matter ? What have you done ?

ElaineTherese

Hi Warian!

((Hugs)) Age 31 is very young to be beginning this journey. Many of the women on this site don't have a family history of breast cancer. Stage III here not Stage IV but....

1) Look for a new surgeon. There's a lively debate about whether or not to remove a cancerous breast after a Stage IV diagnosis, but you shouldn't have to deal with an insensitive surgeon who focuses on your "limited time." Many women live years and years with bone mets.

2) Many women begin their treatment of Stage IV breast cancer with hormonal therapy designed to deprive your cancer of the estrogen that helps it to grow. In many cases, hormonal therapy alone helps Stage IV ladies achieve NED (no evidence of disease or what some people call remission). Some oncologists talk about saving the "big guns" (chemo) for later.

3) Please visit the "Bone Mets Thread" -- it is a very active thread with lots of helpful information.

https://community.breastcancer.org/forum/8/topics/789492?page=699#idx_20953

pajim

Warian_7, welcome to the club no one wants to join. Only the best ladies belong, believe me!

Everything you are feeling is very very normal. And it may last for a while. You're in the shock-and-awe period. It will get better, I promise you.

To address your questions in reverse order, hormonal therapy is the normal place you start with Stage 4 treatment. Believe it or not, if you are ER+, those little pills are far more likely to kill off your cancer cells than the chemo big guns. And you'll feel a lot better while it's happening.

The idea here is you take a medication until it stops working, then you move to a different one. There are dozens of meds available. If you get a year out of each med you'll be around a long time. When my bone mets were found five years ago my onc told me to think long term. As you should do. You want the best quality of life for as long as you can get it. The side-effects from hormonal treatment are normally much less than chemo. [Your experience may vary]

As for the surgery, as ElaineTherese says, there's a lively debate on whether removing the tumor from the breast helps at all. There was a trial going to on address this but I don't know how they are doing on enrollment.

Regardless of all this you need a medical team you can trust and can talk to. This will be a long-term relationship. They need to be able to listen to you and you need to be able to listen to them.

Hang around here and read the threads. Theres one for bone mets, There's one for each treatment. And there's a great one called "Stage IV is not a death sentence" (or something like that).

Warian_7

I appreciate the feedback ladies. Thank you very much for the guidance. God bless

illimae

Is the spread limited to just your bone and just a few or many places?

It’s sounds like you’re being written off already and that really irritates me. I agree with the ladies above.... keep looking, don’t settle and tell the docs how you expect to be treated.

Also, it’s very possible to live many years doing well on treatments with mets, especially bone only.

blainejennifer

Warrian,

There has been a great overview of the process you are about to enter. Because of your young age, you do need to be tested for BRCA variations (Angelina Jolie disease), as a positive diagnosis will impact what treatments to consider.

You are far too young for this disease! I am angry on your behalf. But, your youth and strength will stand you in good stead for the fight ahead.

Here is a link for the Young Survival Coalition, https://www.youngsurvival.org/learn/about-breast-c...

Come here often for support and wisdom. If I hadn't come across this site, I would have collapsed many times over.

PattyPeppermint

31. That’s so young. Just not fair. I was 31 at original dx. Was trying so hard to have kids and then after tx the possibility of having kids was no longer an option. We did adopt two wonderful boys. Def think you need another opinion. This is not an immediate death sentence. You will find many stories on here of women living many many years. Hopefully your youth will be to your advantage since otherwise I am assuming you are in good health. Do you have a support system ? Come here often, post or just lurk. You will find this is an amazing group of women who have supported me emotionally more than most of my local friends and family. People just can’t understand unless they have been there.

jensgotthis

Come to the Bone Mets Thread where you will find an abundance of experience, advice, and hugs.

Also Search for Bestbirds guide on the boards as it is a beautifully curated document outlining treatment options and more. (And stay off google -Bestbird has vetted informationninto this guide)

How many sites are affected in your bones? What is your receptor status? Have you had a pet scan? These are really important questions that will guide your treatment.

On fertility, I would be glad to connect you via Facebook to a dear friend of mine who had a baby a year ago via surrogate while living with MBC. She has made a documentary about this and researched a ton about the ranges if options. Would be good to talk with her before chemo.

My own experience was dx at age 41 wth a big met in my hip. I did chemo, had a unilateral mastectomy, did rads to the breast area, and did rads to my hip as I was at risk for fracture. I’m taking letrozole and Ibrance now and have no evidence of active cancer. I work full time and am a single mom, love to travel and swim.

I know people living with this 15+ years, and still going strong. It’s a terrible dx, and the first few months are a shock. Lean on us here.

Warian_7

Thank you for your reply. I did have all my scans done. They said it's ER+ and PR+/ HER- They started me on temoxefen. Ifound the lump 5 months ago. It was very small, silly of me I was convinced it was a cyst since I get a lot of those on my body. The lump grew over night ! Literally ..:once my skin started dimpling I grew concerned. Had it checked out and that's when they discovered it was IDC grade 2. I was even more shocked that it had spread to my bones !!! Gosh this is a nightmare. Turning to God ...thank you ladies for the love ❤️

Warian_7

thank you ❤️😘

Fish_Child

I think you need to seriously find another doctor. I was just diagnosed this January de novo Stage IV. I can't help with the having children question since I am 46 and was already done. You are so very young. Don't focus on life expectancy because everyone is unique and you don't know what your response to treatment may be or what discoveries are around the corner. My doctor did not recommend surgery to remove the breast tumor, as there is no firm research as to whether it makes a difference, and the surgery itself weakens the body. I believe it is important to find a doctor that looks at this as a chronic disease. The day I got my diagnosis, the first thing I remember thinking is that I wouldn't see my kids grow up, get married, and start families of their own. Three of the four doctors I saw that day looked me in the eye and said "This is not a death sentence." None of us know what tomorrow brings. I could get hit by a car and die tomorrow.