Heartbroken. Devastated.

berries

Hello everyone,

Forgive the emotional post, but I have to get this off my chest. Hopefully I can stop sobbing long enough to see my screen and write this post. I am absolutely heartbroken, as I'm sure most of you can share in my despair. I started my BC journey at Stage IIB, which was a hard enough pill to swallow and after a L mastectomy last week, my pathology came back with 4 our of 4 nodes effected including LVI and Extranodal extension (up to .2cm), which puts me at IIIA. I also had multifocal masses, with the largest measuring 5.5cm (1.7cm and .5cm). Some mixed DCIS as well, but not much. I'm ER/PR+ and Her2- and obviously high risk due to my age and the factors stated above.

I'm only 35 and married only a few years ago to a terrific man. My husband and I were just starting try to have a baby.

I'm so heartbroken. Confused why the surgeon wouldn't take other nodes out during surgery and test more? I'm meeting with him today and absolutely terrified that he's going to tell me something terrible and my prognosis is not good. I am terrified for any scans he will recommend because I simply don't want to know anything more. I want to get radiation, I want chemo, I want to take ALL the pills so I can ensure I will be around for my husband and family.

I am hoping to find any sliver of hope in all this and I cling so hard to the success stories out there. I hope my case is that which can be healed and my husband and I can move on, but the seeds of fear that I have planted in my life right now are growing uncontrollably and it's truly all I think about day and night. I sleep a few hours a night, off and on, and do nothing but research. How do I stop this?

Will I survive?

xx, vmb

bella2013

VMB, I am so sorry that you have to deal with this at such a young age. I am older but there are many BC sisters that have been diagnosed at your young age. Fight and do not give up hope!

Many BC sister will chime in here.

Sending you hugs and prayers,

Bella2013

Moderators

vmb, we are so sorry to hear all this. Bella is right — don’t give up hope. We know it is so overwhelming at first, but you can do this! Knowledge is power and you’ll feel so much better once you have all the pieces of the puzzle and get a plan in place. We are all here to help you through.

Sending lots of hugs,

—The Mod

Mamabear0

Hi VMB,

My heart goes out to you. I am so sorry you are going through this!! I hadn’t a very similar situation 4.5 years ago. I was only 32, with a VERY similar diagnosis. I know how hard it is to find all this information out! I fought like hell and I just keep fighting. I did surgery, chemo as soon as they would let me start (dose dense, starting 3 weeks after), and then rads as soon as they would let me after chemo. I am still on ovarian suppression and Aromasin, and the results of those of use with hormone positive cancers with this hormone therapy look positive! I also changed my diet and exercise regularly now. I still have a high risk of recurrence, but I have learned to be grateful for the time I get (with help from the Lord!) , and hopefully I will live long and die of something else!!! There is hope - be your own advocate and fight strong!!! There are also lots of trials you can look into! Please PM me if you want to talk to another young fighter

MeToo14

VMB, I was you 5 years ago. I had been married just under a year and was looking forward to starting a family with my husband. I was 35 and was not taken seriously at first because of my age. Finally someone listened to me and found out I was stage 3a. I went through a lot but I'm still here. Right now it feels like the world is ending and that this will never end, but it will. You will get a treatment plan in place and one by by each treatment will end. It will be hard but I promise you will come through the other side. I'm on ovarian suppression and aromasin and though it's not perfect, it's totally doable and I am living my life. Go to the stage 3 5, 20, 15+ years out thread they were so helpful for me when I first was diagnosed. PM whenever you want, I'll help as best I can.

Micmel

VMB~I am sorry to find you here. I was diagnosed at age 45. Man of my dreams in tow. I was told I had two years. That was four years ago and I've been in remission thank goodness for three years. Do not ever doubt yourself and your strength. The fact that you're young is a good thing in your favor. More strength. Ask all the questions. Educate yourself all you can. This is your life and you must fight. Cry when you need to but draw strength from that man who loves you. There are MANY treatments. I am still thank goodness again on my first line. You're tough. They'll go aggressive. Let them. Have the surgeries. Take the heavy chemo. If I didn't I wouldn't be here. I feel your fear in my heart and I'm sorry. But I promise you....once you get a treatment in place. You'll feel more control. The doctors aren't mind readers. Look into freezing your eggs for that family. People do it a lot these days. Try to take one appointment at a time in this phase. You can definitely reach remission or NEAD. Yes you can. My best wishes and thoughts for you. And again. I'm so very sorry. You have to find us at all. We are full of support and we do care.

Much love ~M~

Lexica

I can't do much more than Echo everything everyone else has said so far. There are lots of stage three folks that are still here and have been here for a long time. There is hope even though it might not seem like it right now. You're in the toughest part. And while they're definitely obstacles that continue even after treatment, I think you can have faith that it will get better from here. Hugs.

You can push for additional surgery to take out more lymph nodes. I know ladies on this form that have and they found additional cancer. However it does increase your risk of lymphedema. It might not sound like that's important right now but it's definitely something you want to avoid. It's ultimately your call I think and if you push for it hard enough hopefully your will get on board.

berries

Thank you all so much for your kindness. You are right. I am in the thick of it with so many unknowns around me, it's hard for my mind to not go to very dark places. It is so helpful to see and hear stories from those who are 10 years out of this mess. I can only hope and pray that it will get better. I know I promise to God to be a better person and live a much more fulfilled and loving life. I want to help people, I just want the chance to be able to do that...

Bless you all in what you're going through as well. Thank you for your kindness in my time of darkness.

love, vb

Miriandra

Sending loads of good vibes your way vmb! )))))))<3(((((((

I know you're in a scary spot right now, and that's ok. Know that you have love and support from us here as well as that wonderful man in your life. I hope your doctor will have good answers for you, and a strong plan of action to bring you through. You're up for anything, but I hope your treatment is an easy one with really good results. In the meantime, it's ok to mourn and let your grief run its course. Eventually you'll need to bring yourself up enough to make decisions and plan for your future, but for now crying and venting is healthy.

The one thing I would warn against - and it's a hard thing to resist - is worrying. It raises your stress hormones (cortisol, adrenaline) which can impede your body's ability to take care of itself, even under these adverse conditions. Reading and research is great, but try to give yourself time to wind down, meditate (or gently pray, if faith is part of your life), and consciously turn your mind to the positive things in your life. The endorphins our bodies produce when we're happy support our immune system and help us beat the bad stuff. Happy may seem a long way away right now, but it's there for you when you're ready for it. All the best for that time.

Miriandra

BTW, once you've conquered this and ready to think about having a baby again, see if there is a donor milk bank network near you. You still have the option of giving your future baby human milk if that was part of your plan. Here is the milk bank I contacted (Denver, CO), and they were wonderful people.

https://rmchildren.org/mothers-milk-bank/

Meow13

Don't focus too much on the stage, stage 3 is still considered early and very possibly curable. I have a very good friend, Minh. In 1995, six months after her 2nd child was born she was diagnosed the mammogram lit up like a Christmas tree, both sides. She had many lymph nodes literally caked with cancer. She was hormone positive but grade 3, 8 on Nottingham score. She did a bmx, chemo, radiation twice. Had reconstruction DIEP in 2000s, she is doing great! Her youngest daughter has graduated from college and she is still cancer free.

berries

That makes me so happy to hear, Meow13! So happy for your friend.

Meow13

Yes, Minh was so inspiring and helpful to me when I was diagnosed in 2011.

wallan

Hi vmB:

Hugs to you. How gutwrenching and terrifying to be told this. And it is a BIG deal. But there is lots and lots of hope for you. Tons.

I was 41 (only 6 years older than you) when I was diagnosed with a very very similar diagnosis as you. I had chemo, mastectomy, axillary node dissection, radiation and tamoxifen. Then 2 years later, a hysterectomy and oophorectomy (due to the tamixofen) and went on Aromasin for 3 years. I was told my prognosis was 50:50.... and likely I would be stage 4 in two years. This did NOT happen.

It has been 15 and 1/2 years and no recurrance. None.

I did though, get a new breast cancer in the other breast two and a half years ago not related to the first. I wish I had of had a double mastectomy the first time, but oh well. This new breast cancer was stage one, multifocal, node negative with an excellent prognosis ... so ....

I think you can be recovered and go on to have children. My case was unique - I didn't have to have a hysterectomy and oophorectomy but my periods were very heavy at that time (because of the tamoxifen) and they wanted to shut down my ovaries with drugs to put me into a temporary menopause to give me Aromasin. I decided to for the radical surgery. I had my kids already at that point.

Bless you my dear. These boards are wonderful for support and new friendships with people who get it.

You are not alone.

wallan

berries

wallan, Thank you so much for your kindness and sweet words. I am happy to hear you are doing well now despite what sounds like a minor set back. It's nice to have people who know what you are going through. Who understand the sheer, gut-wrenching terror of this horrible season in our lives. It's not fair, but I have made a promise to myself and to God that because of this, I am new person. I will not stress or spend time focusing on the negative in my life or how I need to lose 7 lbs to be beautiful again. Or how I should not have cut my long, long dark hair in exchange for an easier-to-style routine. I spent countless hours focusing on the wrong things and because of this diagnosis, my outlook has changed completely. If God will let me get through this, I promise to be better. Do better. Help fill others plates before my own.

I just want to be okay and live a long, long happy life with my sweet husband. Prayers are welcome.

Thank you for listening x

M0mmyof3

VMB, I was 37 going on 38 when I was diagnosed 6 1/2 years ago. I totally understand where you are coming from. When I was diagnosed, I felt like my life was over. I was just under 9 years of marriage and had no kids. While I miss not ever having a child of my own, I had a dog and cat who we had gotten as babies and I considered them my “kids". I had a wonderful support system from my husband, our family and friends. I did chemo, bmx and a year of a targeted therapy. Although my doctors had reassured me I had a high survival rate, it wasn't until the week after my first treatment when my oncologist told me that she could tell that it was working as she noticed the area of concern had changed visibly that I believed it. Never did rads. My best advice is to never lose hope and to keep fighting.

karen1956

VMB - I'm so sorry that you had to join this club!! I was older than you when Dx and done having children - but I'm 13+ years since Dx and still NED. There are more and more long term stage 3 survivors!! Its one day at a time and sometimes its just one foot in front of the other...Hugs to you

Meow13

Great to hear from so many long time NED survivors!

berries

thank you all so much. i'm just so terrified that my life is over before it truly began. please pray for me, if that is something you do. every twitch, ache or pain (I'm only 35, active runner for years) has sent me into a dark, dark, downward spiral that I can't seem to shake. I spend hours and hours on these boards a day, researching outcomes, comparing my diagnosis to others, reading old threads, praying that this hasn't spread anywhere and I'm spared by the grace of God.

I scheduled my bone and CT scans for next Tuesday and have no idea how I'm going to get through this. My husband asked me the other day, "will we ever be happy again?" and a rush of guilt poured over me. I sure hope so, honey. I pray for a long, long, long time.

thanks for listening x

ctmbsikia

vmb-good luck next week. I get really angry when I see 30 and even 40 yo's faced with this. I'm much older (58) and struggle at times to make sense of it. I can only imagine the emotions at a younger age. So pulling for you...…………...and sending cyber prayers.

M0mmyof3

vmb, my hubby was the same way. He is older than me and it was very hard for him to see me go through this. Take things day by day and find happiness and joy in the little things.

Meow13

We are praying for you. I hope you get some much needed good news from the CT scan.

trinigirl50

Sending good vibes your way. Try to stay off the internet (including this site) until you get your results. Do something that forces you to give it full attention.

I had 20 positive nodes 6 x 6 x 4 area of tumour involvement. I also thought to myself, will I ever feel normal or happy again.

Time has passed. On most days I feel normal and I am often very happy.

InnaB2018

Stay strong, girl! I was 45 going on 46 when the scythe fell (metaphorically speaking). I thought I’ll never smile again. Yet, I am laughing now from time to time. It’s hard, but doable. Chemo sucks big time, radiation is brutal, and surgeries are a major drain of happiness. But you’ll overcome it all because you have no other choice. Your life is what you make of it, so make it worth living for.

Rambros

good luck with your scans vmb, and I can promise you that you’ll be happy again. I was diagnosed at 36 with 2 little kids in preschool and I cried every day for months & months and also spent way too much time reading these boards. I’m 41 now and can honestly say I’m happy but I remember the early days which were so hard.

If possible try to make your scans early in the morning and then call your doctor at the end of the day to see if they have the radiologist’s report to tell you the results. My oncologist had my PET scan results the same day and I so appreciated her calling me back to let me know.

Take care

M0mmyof3

Praying for you and your hubby.

berries

Thank you so much Rambros

I can't imagine having children now and the stress of taking care of them while going through this. You are so strong!

Del13

VMB, put your running shoes on, go for a run, and scream,cry, run hard, fast, hey girl you got this! Now let’s prepare for the race,, hugs girl,

Newfromny

vmb you are in my prayers, I was diagnosed either IIb or IIIb(clinical IBC 1 year ago, and it's been a rough year, my husband also wondered if our life would ever get back to normal. Slowly it does, chemo was awful but then the good days, the normal days become more frequent. I had a double mastectomy in March and pathology came back pCR. I have one more herceptin/perjeta infusion and will be on an AI for 5 years, but I have so many good days now . Hang in there, you can do this.

JRNJ

hi vmb. Mentally I’m in the same place. Diagnosed mid August. Can’t stop reading. Upset surgeon didn’t take more nodes. Just found out about extra nodal extension and dont really know what that means. She won’t do alnd but is recommending radiation. I’m wondering if that is going to be good enough. Chemo not yet determined. It’s hard to stop second guessing every step.

Rambros

JRNJ - the extra nodal extension means that the cancer filled up the node and then came out of the node a little. My 1cm positive node also had 1 mm of extra nodal extension but the doctors didn’t seem to do anything differently with that information. It’s hard to think that the cancer got past the outside of the node but you have to feel confident that it stopped right there.

With positive nodes and grade 3 you’ll most likely get chemo. You can use that time to think about what you want you want to do regarding radiation versus alnd (or both). Probably a good idea to get a few opinions.

Take care.