Phone call: Stage IV BC

Anonymous

After three weeks of waiting for scans and biopsies to be complete, I got the call this morning. My BC has spread to my lung and to lymph nodes in my chest. And I just finished Rads the end of May!.

Right now I am numb. Wednesday I have an appointment down at Sidney Kimmel Cancer Center at Johns Hopkins to see what the treatment will be.  I am numb right now. Obviously I have to regroup and fight a battle that I had thought was over.

What do you do when you first learn about BC mets?

Bette 

LavenderNLace

Bette, I'm so sorry to read this.  Words are so inadequate at a time like this but know that I am thinking of you.

hollyann

Bette so sorry.....This cancer crap sucks!.......Please know I am thinking of you and wishing a speedy recoveryand that you are soon dancing with NED or seeing the Stable Boy!........I keep praying for a cure but no one can find it..........Gentle hugs to you sweetie.........

BonnieK

Bette -- I am SO sorry that your cancer has spread and can only imagine how numb you must feel right now.  All I can think for you to do is move forward and be confident that there are treatments to get you well again and silence the beast that is BC.  Please stay strong and know that you are in the thoughts and prayers of so many you have touched very deeply here on these boards.  Take care of yourself and stay strong.  My thoughts and prayers are with you.

-bonnie 

susan13

Bette-I am so sorry and so sad to hear your news. After everything you have JUST been thru... just not fair.  My thoughts and prayers are with you.

KerryMac

Bette - I am so sorry to hear this. I have been following your story, and was so hoping this was not the news you would get. It is really tough, but remember you are tough too. I will be thinking of you.

Marple

Damn!!!

SusieMTN

bettelou68  Bette so sorry to hear your news, I echo the thoughts of those that have posted before me.

You will be in all our thoughts and prayers for a NED dance!  Hugs to you!  Know we are all pulling for you!

Jellydonut

Dear Bettelou,

Lavender is correct -- words are inadequate at a time like this.

I'm sorry you got such devastating news today but do know that there are numerous drugs to fight this predator and hundreds of millions of research dollars that go into bc.  New drugs are coming to market all the time.

Please let us know what transpires when you meet with the docs.

Hugs to you (((())))

Jelly

sushanna1

Oh Bette.  I am so sorry.  Hang in there.  I am sure that some of the Stage IV girls will come along soon.

Sue

BooBee

Big hugs Bette.  I'll be praying for you.  NED NED NED

lexislove

WHAT!!!!

Bettelou...this is not the news I wanted to see. F*ck!

I'm sorry...so..so sorry. Now you are out of the waiting room, and ready to tackle this monster.

Again..so sorry.

lexi4

Dear Bettelou, 

Doggone it! I am sorry that the beast is back. Please know that you are in my prayers right now for comfort. Prayers that the right tx will be found to blast those suckers.

Hugs and Prayers,

Lexi

kk69Z

Bette: I am so sorry to hear the news you got that no one wants to hear. Be tough and fight with all you got. Stay strong.

EWB

Bette- hold strong to your faith, know that you have a wonderful husband in Tom and so many here praying for you. Hold strong dear one.

2timer

I am so sorry.

What a way to find out you have mets.  They could have at least scheduled an appointment to discuss the results.  That would not have changed anything but it seems like a gentler way to tell someone that kind of news.  I hope  you can get them under contol quickly and then move on -- mets don't have to be a death sentence.

coonie

Anonymous

Thanks for the hugs, coonie

Bette 

Brendatrue

Dealing with mets changes things/life/plans, and quickly. When I was diagnosed with chest wall mets in January of this year, I knew intellectually that I could work hard to find a plan that would be the best for me, but I didn't realize how hard that would be--in part because there have been differing opinions on the "right" treatment course. My situation has been called "unusual" and at first I got tired of hearing that, then I developed a way of using that to push members on my ever changing care team to consider others' viewpoints and mine as well. I also have realized that the plan that is "best" or "right" for me may not ultimately manage this disease as well as I would like (that's certainly an understatement). At this point I technically have NED, but all the providers feel like they have to keep reminding me that more than likely, this is temporary. All along the way, I have been challenged to learn how to cope with uncertainty AND how to develop a plan that will reduce as much as possible the spread of this cancer in my body. I have to admit that I struggle with recurrent anxiety and with grief, but I am still hopeful about who I am and what each day of my life will bring (and what I bring to each day of my life). I also am still learning how to live a life that has so much to do with cancer--again--while also remembering that my life is more than "just" dealing with cancer (no easy feat some days).



I hope you will have a better sense of what your next step in treatment will be, and confidence in that plan, after your appointment on Wednesday. I will check back to hear more. Take good care of yourself in the meantime.

coonie

Bette - my thoughts and prayers will be with you and your medical team tomorrow. Hope you feel better after your appointment. I can feel your fear, and I'm so sorry. Just remember your Maker has you in the palm of His hand.

apple

so sorry Bette. Just wanting you to know that i have a friend who has been stage IV since the onset of her cancer at the tender age of 27.  She's now 38 and still fighting.   She's just the same.. still outwardly healthy and cheerful.  She had a baby before the diagnosis and he's 11 now.  I make her cookies all the time.

may your upcoming treatment destroy the cancer totally. what a phone call. 

Mazy1959

Bette,

When I first found out I had mets to bone, it was a week before xmas...Honestly my first thoughts were what am I gonna have to do to get it under control. I was in alot of pain and could barely walk. I was in a wheelchair the better part of the first 3 months but with each passing day I felt a little stronger. Once my treatment was in full swing and I could tell it was working..I was ok. My tumor was the size of a large marshmallow on my 5th lumbar vertebrae and in 9 months it was no longer visible on scans.

I do have permanent damage from the tumor but I am doing okay. I cant do alot of the things I could before and that is frustrating but I am alive and have a pretty good quality of life. No its not perfect and I get so angry sometimes at what cancer took from me. But I am so grateful for the treatments we have now and great doctors who have helped me become stable and stay that way for about a year and a half so far.

I so hope you get thru this okay. Feel free to IM me anytime..Hugs, Mazy

neogirl

Mazy1959,

I just found out that I have mets to the bone (lower spine spots/hip area).  I am now on Tamoxifen and Zometa infusion monthly.  Is there any other treatments I could get to get rid of this mess.  No pain anywhere and hope to keep it that way.

I am only 50 and would like to live a bit longer, seems like my ON is keeping info from me or maybe it's just me.  Don't know what to do now.???

What was your full-swing treatment and glad to hear you are doing okay.

Kathy

coonie

Bettelou sending hugs and prayers to you today. Hope everything goes ok at the docs office. I pray you have the strength and courage to put up the fight against that nasty ole cancer!!!!!

((((((((((((((((((gentle hugs to ya))))))))))))))))

BonnieK

Bette -- You are in my thoughts every day and I'm hoping and praying that whatever treatment is decided upon will put the beast back to rest.  Love your new avatar.  --bonnie

Anonymous

The onc at Hopkins gave us a lot of hope, and told me to go home and live my life and not stress out about this too much.Treatment is not set right now. Possibilities include a trial with PARP inhibitors, Xeloda or Carboplatin. Anyone know anything about these?Also, my cancer profile has changed. My estrogen receptor is so weak, that he said I am practically triple negative and would not benefit from hormonal therapy.I have to have a bone scan to check out some pesky achy ribs on my cancer side.That is all for tonight.Bette 

Mazy1959

kathi,

I took 9 radiation treatments when I was first diagnosed. Other than that I have been on Aromasin and monthly Zometa. Aromasin is credited with shrinking the tumor and Zometa is credited for healing the bone. Zometa has been proven to help prevent mets and my onc says I will take it til there's a good reason not to. My bloodwork has been great and my scans all clear. Unless Aromatase Inhibiters stop working, I wont have to do chemo. My onc says that although stage 4...I could live a near normal lifespan. I had 2 great aunts who had the same type as me and both were in their 40s when diagnosed, only had masectomy.....one died at age 75 from mets to brain and the other died a few years ago of a heart attack at age 93. So I am hoping I have just as good an outcome as they did. I am 50 and hope to be around alot longer. I hope this helps. Hugs, Mazy

denisela

I am sorry to hear your news , I know when I got the news I was also numb but you will regroup and conquer . Never submit. Live your life to the fullest and Love and Laugh often and most of all pray . I will keep you in my prayers as I do all my BC Sisters.. 

                                                                                                  Love Denise

coonie

BetteLou....you should enjoy every second of non-treatment days while you can. I'm not very familiar with any of the treatments except the ones I took, but I have been reading alot of positive things about PARP inhibitors. Maybe that's your answer. We'll pray it is!!! God Bless!!! Sending you gentle hugs and prayers!!!!!!!!!!!!!!

bethaib

Oh Bette...I am soooooooo sorry to hear the news, my heart just dropped when I read your post. I can't begin to imagine what you must be feeling, Numb is our body's way of giving us time to regroup I think.

I know they are doing so much more with treatment now than they ever could, and I have read some encouraging reports in the past few months...so don't give up hope, it's just a matter of finding something that willl work for you. You are already a fighter, it just means another battle. We are woman, right?

I am thankful you have Tom to be through all this with you...you are not alone....besides you have all of us too, how lucky can a gal get? : )

I'm not a particularly religious person, but I sincerely hope that God decides he needs you here for a long while yet.....

words are sometimes so inadequate...there are times a silent hug means so much more....

Beth

lovinmomma

I am so sorry that you are having to join our group, but these women on the stage 4 board are incredible!! They have helped me so much. It is scary, but you can do it!