Topic: Young with MBC

Aug 27, 2019 12:20PM Jsniffs wrote:

FuzzySocks - I'm in a somewhat similar situation. Diagnosed when I was 36 (and pregnant) with what they thought was stage 2 in 2016. Did active treatment in 2016. It turned out to be stage 3 after surgery because of the # of lymph nodes. I didn't have any back pain, but I had abnormal labs, which triggered a bunch of scans. I was diagnosed with MBC in late 2018. I have a 3 year old, so I haven't had to explain a lot of details yet, but the questions have started coming. I am anxious about having to explain things in the future.

For now, I try to stay positive and try to focus on how *I* feel physically, mentally, and emotionally...not how I think the doctors or anyone else thinks I should feel. With MBC, at least there is some hope. I try to read a lot of inspirational stories. Hopefully things will get easier once you know more details and have a plan. Sending you lots of love and positive thoughts!

Aug 29, 2019 06:32PM edyste wrote:

My story- found a lump while breastfeeding my 2 month old. I am 35. A couple weeks later find out it’s IDC, then the news kept getting worse and worse- stage 4 de novo. Mets to bone and likely lungs. It’s been 5 months now and living with mbc has become my new normal. Happy that I am feeling great.I agree little ones are definitely a distraction! Glad I there’s a thread for us young ones.

Aug 30, 2019 05:54PM Formyloves wrote:

original dx at 26 with stage 3c IDC. Metastaic diagnosis in 2015. Progression while on HP and started Kadcyla today. Here we go again.

Sep 8, 2019 12:47AM BackToNature wrote:

Hey there,

Thankful to have this forum, but I am so sorry that each of you is going through this. I found this at 1:30 am while staying up due to nausea that won't let me sleep. My story is similar to many.

Diagnosed in late 2016 with what was stage II but later discovered stage III breast cancer (ER+, PR-,Her2+). Treated with chemo, mastectomy (axillary nose removal), radiation and oophrectomy, and ongoing infusions until mid 2018, “free" of cancer until June 2019 recurrence as MBC in opposite lymph nodes, skin, lungs and bones. My kids are now 5 and 7.

Thankful for each moment

Sep 9, 2019 04:32PM LoveFromPhilly wrote:

Diagnosed on my 40th birthday de novo with extensive bone mets. I had a lump that was diagnosed as a fibroadema in 2011...kept my eye on it...seemed okay! Cut to March 2017 when breast seemed to blow up with a large tumor and two swollen lymph nodes in right armpit. I am here. So far moving along about 2.5 years from diagnosis and starting treatments. Doing okay! Fingers always crossed, always knocking on wood.

Sorry to those who have had to go through this with little ones.

I don't have any kids...and was put into medical menopause so not gonna happen in this lifetime. Embracing being single as best as I can.

Hugs,

Philly

Sep 12, 2019 02:55PM FuzzySocks wrote:

yes, BackToNature, my kids are back at school and it's been nice to have that routine back! my youngest started kindergarten and although it's only half-day she loves it and it gives me a few hours to relax!

things for me have been busy, busy, busy. had my appointment with my oncologist (yay! no new progression!), settling in after moving to a new house, and just had my oophorectomy. im ready to try and have a more relaxing fall!

the one thing i'm struggling with, and i'd be curious to hear all your thoughts...work. has anyone returned to work? i still just don't have the energy and i just don't know if it'll be worth it?? i stopped work (i was/am an RN) when initially diagnosed and i wasn't able to return before my stage 4 diagnosis. now i just don't know what to do.

Sep 12, 2019 06:56PM B-A-P wrote:

I was diagnosed at 30 , de novo to liver. One teeny 5mm met. I was brushed off for two years after worsening symptoms of pain and discharge. No one would give me an MRI. Finally when my nipple started to to leak blood, my surgeon finally did a duct excision ( But not after trying to talk me out of it). It was discovered that I had dcis in that duct, was sent to the cancer centre for that to see if there was any treatment for the dcis that was removed. In between all that, I finally got my MRI. when I met with the radiation oncologist for the DCIS, she informed me that she couldn't advise me on that as my MRI was extremely concerning. That started the cascade of tests that lead to my diagnosis. My Met showed up on pet and MRI, but becuase it was so small, they couldn't identify it. SO we waited to see what chemo would do. After a pet after my 4th cycle, it not only showed my liver was clear, but so was everything else.

At that point it was decided the liver spot was a met , but that I was oligometastatic and could be treated with curative intent vs the palliative treatment they were giving me. Current scans are still clear. I'm one year out. Hopefully many more to go :)

Sep 13, 2019 06:50AM edyste wrote:

I am working. Right now im responding to treatment and have few side effects. I don’t love my job but it’s nice to have something to occupy my mind and be around friends/colleagues. And it’s nice to be making money!!Due to treatment I am out at least 1 day of the week.

Sep 19, 2019 10:33AM LoveFromPhilly wrote:

I hear you friends about the work issue.

I have my own business and had JUST started it up when I received my de novo diagnosis. I remember asking my MO if I should get onto disability. Both he AND my mother told me not to, as that it is possible to live with this disease a pretty “normal” life.

I did cut down on hours and now I work 4 days a week typically. I love my job and what I do, and i am my own boss so if I leave for a weeks vacation that’s money lost. And any sick time is on me too.

It’s a conundrum but what can ya do?

I plan to keep working as long as I am able to, because this work brings me joy and happiness.

I do worry what my patients will say/think if I ever “appear” sick, like from a new treatment. Somehow I managed to get through adjusting to 4 cancer medications all at the same time while continuing to treat patients. That right there gives me hope that I can continue to conquer any med changes without too much of a hitch moving forward. Trying to stay optimistic

Oct 29, 2019 09:03PM Novagirl wrote:

JFL-I haven’t talked with you on here in a while. You are one of my heroes here! A wealth of knowledge, always willing to help others, working raising a little guy all while making it look easy!

I was first diagnosed at 31 while nursing my son. I made it 5 1/2 years before being metastatic.

My friend (it’s my cousin’s sister in law) went metastatic the same week as me in December of 2018. She is triple negative. She has blown through treatments. Her son is 5 years old.

I’m at home watching the World Series. My son is asleep and my husband is watching at my parent’s house.

I just found out my friend is doing home hospice. There are no more trials or treatments. I sobbed so hard and for so long tonight. I haven’t cried like this since December when I got the news. I’m being told she’s at peace with this decision (there’s no other choice) a true tragedy to not see your son grow up. I know she’s so scared. I can’t talk or text with her anymore. I’m so sad. I can’t help her.

I just feel like I can’t pick myself up. This pain is so awful.

I recently resigned from my career. We’ve been so busy with travel and events I haven’t settled into a routine yet.

I had scans yesterday. I’ll continue on Ibrance being stable.

Oct 30, 2019 01:00PM Novagirl wrote:

Great to hear from you too JFL!! Thanks for your kind words about my friend. I know we on this board know this realty all to well. You are right, it never makes it easier. Today, I can’t shake the sadness and the grief. I’m telling myself that’s okay. Tomorrow is Halloween and my boy is super pumped to be Teen Wolf. It started out as Michael jackson warewolfe but everyone at the DC Zoo thought he was Teen Wolf so now he is teen wolf! Lol!

I can’t remember, does your son know about your MBC? My son does not.

Nov 6, 2019 05:13PM Novagirl wrote:

oh gosh JFL, I feel like I could talk with you for hours. We are in a similar situation with our boys.

Before we get to that...I hope Thor enjoyed trick or treating! We are big Avenger fans in our house too!!

I found out my friend Wendi passed last night in her sleep. I have often felt guilt because my QOL has been so much better than hers. She suffered and she wasn’t able to do the things she wanted to with her son and her husband. She was robbed. Her triple negative cancer was never beaten back. It only grew.

Last week when I was on BCO and I found out Wendi was in home hospice. I was in despair.

I reached out to an organization that night that I had originally kind of written off just because my son doesn’t know about my diagnosis.

This sweet woman wrote me back and asked if she could call me. She called me at 7:30 pm. She was an angel and was just what I needed at that moment.

The organization provides trips to families with a parent facing a terminal diagnosis. I had made up my mind about telling our son at this point in time. I often get annoyed because people who are not in this situation like to tell me how this is the incorrect choice.

Anyway, this woman lost her mom when she was 7. She presented data and facts and opened my eyes and helped me so much.

She said data shows kids do better when they have more time to prepare. She cited a small study that hooked people up to vital monitors and put them in two different rooms. The first room they popped a loud balloon without warning. The second room the warned people that they would pop the balloon and it would be loud. Clearly the people who had advance notice were less stressed.

This is so silly and simple but it made sense to me.

Our son attends Catholic school too. He also doesn’t know what the word cancer means.

I told her my husband had asked me when I was first diagnosed what we would say to our son when he asks us if I’m going to die? I told my husband affirmatively we would tell him NO.

She said that we shouldn’t say that. To say, we don’t know. I’m here now basically and assure them as and if we get new information we would tell him.

She gave me a new perspective and has made this gut wrenching conversation seem less impossible

Nov 30, 2019 03:04PM Malinda815 wrote:

My first time diagnosed I was 28. This September I turned 30. Cancer is back and it’s very bad. Everyday is a struggle for me. I am in depression now. I am not a fighter. I am getting chemo weekly . I don’t know if I have a future a

Dec 3, 2019 05:45PM mshar wrote:

Malinda I so wish that you weren't going through this but please know there are many wonderful people on these boards to talk to and who will help you keep your head above water. I'm almost 29 and was diagnosed de novo metastatic last year. I don't know if I have a future either but I still have today and I try as hard as I can to keep myself focused on that. It doesn't always work, and that's ok too. I did chemo for 20 weeks so I can understand how you feel. It may not feel like you're a fighter but just by making it to your appointments you are doing so much. Be kind to yourself, we are all with you.

Dec 14, 2019 06:19AM Proverbs312b wrote:

Hi Malinda! I'm sorry that you are going thru this! There's no feeling quite like hopelessness.....I've been there. I can't take the cancer away but I do wish to encourage you as you go thru your journey, you don't have to go thru it alone! None of this is a surprise, even if it is to you. You have a Creator and Heavenly Father who loves you with an everlasting Love (Jeremiah 31:3) & has a purpose and a plan for all of this (Jeremiah 29:11). He promises to be with you thru it all (Joshua 1:9) & to give you His perfect peace if you trust Him (Isaiah 26:3). Malinda you can have hope for a glorious future here and beyond, if you put your trust in and believe in Jesus Christ! Please don't hesitate to reach out, I'd love to talk with you more, if you're interested.

I have 3 children under 9 and I homeschool them, i was 1st diagnosed december 2015 at 36 while breast feeding my 5 month old, went thru 5 months of chemo, 2 surgeries: double mastectomy & ovaries removed, & 6 weeks of radiation, then daily letrozole until last month when I was told it spread to my lungs, liver, ribs, spine & pelvic. I'm disappointed it came back and am sad to think of missing being here to watch my kids grow up, but I know that this didn't happen by chance or that my life ended when I got my dx, in fact whenever I do take my last breath my life will continue in eternity where there will be no cancer, no tears, no violence, cold winters :) I long for that place & time, until then I try to enjoy this time with my family and friends. Please be encouraged Malinda!

Hope to hear from you!

With love,

Jessica