HealingWell
Search Close Search
☰

Stage IV Breast Cancer with spots on spine and ribs

Support Forums
>
Breast Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/26/2009 6:04 PM (GMT 0)

 I was disagnosed with breast cancer 2 weeks ago. I just found out the day before Christmas that my CAT scan shows  spots on my ribs and spine. I go in Tuesday for a PET scan. Before I knew I had the bone cancer I was suppose to have 3 months of chemo, a mascotomy, 3 months of chemo again and then radiation. Chemo was suppose to start this coming Wednesday. I have been reading these books they give you from the hositpal and they bascially say I am dead so start planning.  How do you go on with life knowing this kind of thing. Please help. I try to protect my family and freinds but its so draining to try and hold it together. Can you help me? Thanks.

Posted 12/27/2009 5:48 PM (GMT 0)
Lmarie there are other members here who have stage IV BC and are 15 year survivors.....it is NOT a death sentence. I have read many times while it is not considered curable it is CERTAINLY treatable.

I'm sure some of them will see your post, reply, and share their experience. They will help and encourage you.

Welcome to HealingWell, keep posting and let us know how your doing.
Posted 12/27/2009 6:12 PM (GMT 0)
Thank you for replying. I am so overwhelmed with grief that I am barely getting on with life. Thanks so much.
Posted 12/27/2009 7:19 PM (GMT 0)
Lmarie
Cut and paste the link below it will help you so much to read it. If it doesn't work then do this, go to the bottom of the BC posts and click on 100 posts then scroll down and you will find a post about stageIV BC
Believe me you are not alone and when you read on you will know. Please keep as positive as you can...it's half the battle and it's a batle you can win.

Everyone here will help you through this and soon others will see your post and reply.

https://www.healingwell.com/community/default.aspx?f=14&m=1359607
Posted 12/27/2009 7:24 PM (GMT 0)
Let me try this....not sure how to post a link, but will try.

www.healingwell.com/community/default.aspx?f=14&m=1359607
Posted 12/28/2009 12:12 AM (GMT 0)
Hi Lmarie.... I was diagnosed at Stage IV, five years after my initial diagnosis. My girls were 12, 11, and 3. I was devastated as well. I bought in to the doctor's suggestion to get my affairs in order. All I could do was cry. Then I realized that I didn't want my girls to remember me that way. I had always been a fighter and this was no different....so I chose to live whatever time I had left to the fullest. By the grace of God that was TEN years ago! You can do this...doctor's don't know everything and they have no clue what God has in store for you. Stop reading and keep on living!

Susan
Posted 12/28/2009 5:51 AM (GMT 0)

Hi Lmarie! My name is Deb and I have Stage IV w/ mets to the bone. I was first diagnoised in Apr 2001 and then was diagnoised w/ recurrance in 2003. I also felt the same way that you are feeling right now. I thought that there was no hope but I was soooooooooo wrong. This is a managable disease. I, along w/ manyother women here are living proof.

The firsr thing that I would suggest is that you find another oncologist or family physician. When looking for an oncologist, find one not only that you and your family feel comfortable with but most important one that feels they can help you. When you go to the oncologist, take someone w/ you that can take notes and write down the answers to all of your questions. Take a small tape recorder w/ you. You are going to receive so much info that you  won't remember everything. Make sure to get a 2nd and even 3rd opinion. Make sure that you take a complete copy of your records, scans, etc w/ you. You have time to do this.

Everyone here has been where you are right now so don't hesitate to come here and ask any question, no matter how silly it may seem. Or come here and vent. Our families and friends try to understand what we are feeling but most times they are more frightened than we are. I have always told my family and friends that if they can't say anything positive. don't say anything at all. During the next few days, laugh as much as possible. Laughter i a great stress relief.

Please keep us informed and let us know what we can do to help.

Hugs, smiles and prayers..

Deb

Posted 12/28/2009 3:39 PM (GMT 0)
Nothing I can add will be better to hear than the words of Deb and Susan. I've heard of oncologists who prefer to think of your situation as a "chronic" disease, like diabetes. Yes, it can eventually kill you, but with treatment and proper management, you can certainly have a lot of living left to do. Of course this is devastating... you should allow yourself to grieve, and then move on to fighting this thing. Hugs to you...

BEV
Posted 12/29/2009 5:04 AM (GMT 0)
I echo Bev's note....this is definitely devastating news and even for those with stage I or II, there is a great deal of grief and loss and anger and a whole lotta difficult emotions and decisions.
If your onc gives you a death sentence, get a new one who gives you hope. There is a lot of information for you to learn about your cancer, it's progression and the latest in treatment advances. And even if your onc is great, consider a second opinion for reassurance or other options.
And besides our 2 gals who posted here with their long term survival, another sister of ours, Deb, has been maybe 15 or 20 years after bone mets, and has been disease free all these years. New treatment advances are coming out all the time....so like Bev said, allow yourself to grieve and deal with the tough news, then get out there and fight!
Lori
Posted 12/29/2009 4:17 PM (GMT 0)
Forgive the echoing, but I'm also a vet of this site and have seen and heard some amazing stage IV stories.  please check someone else out.  Go to a city.  We jews from L>I> run to Sloan, but maybe there's a cancer center near you.  Let us know how it goes.

Posted 1/3/2010 4:35 AM (GMT 0)
I'am not sure if I am doing this right but here it goes. Had my first of Chemo last Wednesday. I started on Taxol which I 'l'll take 3 times a month. I was suppose to start Avastin but I have to wait till they put the port in on Monday. Next Chemo is Wednesday the 7th. I will take Zometa once a month to  prevent bone fracture. I had my hair cut really short this week and looked for wigs today. Both made me sick to my stomach. I have been sleeping my days away so I dont have to talk to anyone. I go to work because I have to do. I just dont know how to live with this. Most of friends dont know that I have stage 4 cancer the ones that do say everything will be alright. So lost....
Posted 1/3/2010 8:00 AM (GMT 0)

First, big hugs to you. I know that you are feeling very frightened, confused, angry and alone right now. These are all very normal feelings that you need to experience and work thru. I am very proud of you for being proactive and getting your wig so that it will be ready and for cutting your hair. This is one area that we have control over..our hair. Have fun w/ the wigs. You can go any color or any style that you want. Check w/ your local ACS for free wigs. You might have use the words "cranial prothesis" on your insurance forms to get your insurance company to cover the cost. Yes, you will definitely lose your hair BUT it will grow back. If your hair is straight now it will come back in curly and if it is curly it will come back in straight.

Sleeping is one way to deal with all of your emotions right now. I did the same thing and I can remember not wanting to answer the phone. But don't totally shut yourself off from everyone. Talk to your physician or ACS and find someone that is local that has been or is going thru this now. Don't be afraid to cry or scream.(the shower or car is a great place to do this) Let your friends and family know what you need...a shoulder to cry on..someone to go to lunch with or shopping..help you clean your house..watch your kids or cook some meals. You will find that everyone is wanting and willing to help but don't know what to do. Don't be afraid to ask. Also let your onco know how you are feeling and get a med to help you w/ this depression. You said that most of your friends don't know about your diagnosis. If you don't feel that you can tell them, ask someone that already knows and let them tell those you want to know. You are going to find that your close friends can really help you thru thi journey.

You will not regret getting the port. It will make the treatments so much easier plus all of your blood draws will be done thru the port. I have had mine 9 yrs and forget that it is there. The anticipation of the treatment is much worse than the treatment itself. You will find that the side effects that you have after the first treatment will most likely be the same after each treatment. Remember that there are meds that can be taken for almost any side effect that you will have. Don't be afraid to ask or call once you get home.  The worst side effect of the taxol will be the body aches. I found that if I soaked in a hot tub of water and took my pain meds it helped. I found a bath salt at WALMart called "batherapy". I used the lavender, which is for relaxation, and the "original" (green colored salts) Very inexpensive and works wonders.

Each one of us here has handled our journey differently but one thing that each of us has in common is that we didn't give up. This is a battle that can be beat but only w/ the belief that you can beat it. Just take one day at a time. Laugh as much as possible. I love Carol Burnett and one of my friends gave me a complete set of her tv shows. When I would get depressed, I would watch on of those tapes and find myself laughing and feeling better You will have down days but hopefully those will become less and less.

Always remember that we are here for you.

Prayers for peace and strength

Deb

Posted 1/3/2010 4:18 PM (GMT 0)
Deb thanks for your wonderful suggestions. I feel so sorry for myself. I do not want to go go out, why bother. if I do start to feel better does the crying stop? I am tired of it. I have wonderful friends but they must not understand what Stage IV stands for and I really do not want to explain it to them. I am trying to join a group now that hows the same stage of cancer as I do, just waiting for an email.
Posted 1/3/2010 4:18 PM (GMT 0)
Oh, Lmarie... it is so hard, I know. You know, when I was going through treatment, the most important thing to me was to keep my life as "normal" as possible. Some days, all I could do was put one foot in front of the other to keep going, but that's what I did. And I tried to keep a smile on my face and humor on my tongue, because otherwise I might just cry and scream and fall apart. I did the same as you, I went out and got very long hair whacked off short before it fell out, went wig shopping... my hubbie went with me, and I let him pick out my new hair. Oh, my, it was some big hair! Letting him pick was probably not the best decision I ever made! But he thought I looked beautiful in it, so what the heck! I was always smashing it down, and he was always fluffing it up. It really didn't matter, because the only time I wore the thing was when I was at work. Sinead O'Connor was big then (I'm dating myself here!), so I could easily go out with the bald head and get mistaken for a teenager, especially when I was with my teenaged daughters! But initially, the loss of that long blonde hair that my husband loved so much was worse than losing the breast.

I remember one of my doctors telling me, "we're thinking about the long term here, we're not even going to think about you leaving us anytime soon." I tried to keep that hope he had like a promise in my heart. And there were days that were bad, but there were days that were good as well. So you just have to get yourself through the bad days, and enjoy every minute of the good ones. Easier said than done, I know. It sounds kind of silly, but when I was down, I would tell myself that I could get hit by a bus tomorrow and be just as dead, so I shouldn't waste my time grieving over breast cancer. Might not work for everyone, but we all find our ways, no matter how ridiculous they sound to others, and we deal with it the best we can.

Hugs to you!

BEV
Posted 1/4/2010 1:24 AM (GMT 0)

Hey...just adding my 2 cents' worth about the hair....

I have curly hair, have had it since adolescence. Love it some days, hate it others. But is is a part of my identity. Years before  was dx'ed with BC, I had a bad dream one night, that I'd need chemo and my hair would come back in straight. I was actually disappointed!

But in reality, contrary to what Debbie said, mine came back 100% identical to before chemo. My experience with myself and others is that it did come in more curly at first, whether hair was straignt or curly before. But for folks who had straight hair, it seemd after a few months f waves, the curl fell out. (And really, Deb is such a fantastic source of info and support, this is not meant as any disrespect to our sister!)

My point may be silly in the grand scheme of things...but I wanted to let you know that your hair may come back the same as it had been....to me, it was a comfort to know that. With all the trauma going on now, I did not want to face the changing of my looks forever.

Hugs,

Lori

Posted 1/4/2010 2:26 AM (GMT 0)
Getting my hair cut makes it so much more real for me, Stage IV cancer how can that be. My life has been pre determined for me. How can I smile and laugh when I know the end could be near. I feel sick. WAS there every a book that helped you? Thanks Lmarie
Posted 1/4/2010 5:06 AM (GMT 0)
LOL..I am glad to know that some peeps hair comes back in the same as when they lost it. I always had very, very curly hair and always wanted straight hair. My hair came back in totally straight and I have to admit that I am glad to have my curls back!

Lmarie...you will stop crying but right now allow yourself to cry. Im not sure what you mean that your life is "predetermined". I want you to remember that cancer is a managable disease. It isn't necessairly a death sentence. I know that if the chemo I am presently taking should stop working, there is another one that has been proven to work that I will be given. New things are being discovered to help manage this  disease. You have some rough times ahead of you but before you know you will be finished  w / your treatments. You have to go thru the grieving process. Don't be to hard on yourself.

I have been living w/ bc for 9 yrs now and I plan to be round another 20 yrs.

Hugs..

Deb

If you want to email me [email protected]

'

Posted 1/6/2010 1:00 AM (GMT 0)
hugs and kisses for you thanks so much
Posted 1/6/2010 2:01 AM (GMT 0)
Lmarie, it is an old book, but I remember a friend of mine whose husband, at 24, was dying from leukemia when I diagnosed, gave me a book called, "From Victim to Victor," by Harold Benjamin. At the time, it was just what I needed. I later passed it on to a friend of mine who was also diagnosed with breast cancer. Do you have a Wellness Community in the area where you live? They can be a great source of support and information, and they really stress that you learn to see yourself as someone who living with cancer, not as someone who is dying from it. I know that's a real paradigm shift from where you are now, but give it time, and you will get to that new level of thinking.

Hugs...
BEV
Posted 3/21/2010 8:25 PM (GMT 0)
In the last month I have also been diagnosed with stage 4 breast cancer. I WILL NOT GIVE UP!!!!! My first sign was actually in my back, a week later the mass. I have a dear friend who has been fighting this for 15 years and I plan on doing the same thing. I know it will be rough but my life is worth it. Good luck to all of us. With the love of the Lord, my family and friends I will fight this and continue to live. I hate what I am doing to my husband of 26 years. This is tearing him up.
Posted 3/21/2010 9:52 PM (GMT 0)
Hello Lovecats! First of all, I want to tell you that I am so sorry to hear about your diagnosis but you have found a wonderful place here to receive lots of support and love.

Your attitude is wonderful!!! Keep those positive thoughts. Many of us here, myself included, have been fighting this darn disease for many years. We have wonderful times and we have bad times. But we continue to support each other and give whatever we can to help each other. What is your treatment course? When do you begin?

I know that you feel badly for your husband but you didn't do this to him on purpose. He is hurting because he is frightened and doesn't know what to do to help you. Just be as honest as you can w/ him and your other family members and friends. I would encourage you to help him find a support group for spouses. It will help him to talk to others that are going thru the same thing.

Keep us updated and keep that positive attitude. Laugh lots as it is a great healer.

Hugs

deb

Posted 3/22/2010 10:17 PM (GMT 0)
Lovescats, you ROCK! Your attitude is also inspiring!

Stage IIIC

5 year Survivor

Judy

Posted 3/23/2010 3:48 AM (GMT 0)
Judy, I agree with you! Lovecats, your attitude is terrific. Husbands have to find their own way of dealing with this disease, and sometimes, I think it is much harder for the ones who love us to get through than it is for us. I also agree with Deb... laughter is a great healer. Cry when you need to, and we all need to every once in awhile, but laugh lots. It is so much more healing!
Hugs...
BEV
Posted 7/31/2011 2:16 PM (GMT 0)
i go to the doctor tomorrow to find out if the 2 masses in my liver are cancer from the breast. what keeps me going is my family and friends and when i am alone i say the lords prayer and it makes me feel better. look at the bright side everyone, which i am trying to do. they have this medicine approved by the fda which is suppose to be released at the end of the year for prostate cancer. supposidly the cancer cells attack the other cancer cells and they are suppose to be working on the breast cancer next, then other cancers, but also my friends brother had a very rare cancer that only 100 people have in the united states and he went to a clinical trail in pennsylvania which i will find out exactly where and let you know and the took the cancer out of his femur, replaced it with a rod, and they are giving him this medicine that is actually shrinking his cancer. what a miracle. they are coming out with new stuff all the time. if anyone is ever told by a doctor that they can't do anything anymore, look for these clinical trails. hope and pray this decision does not pass our way. praying everyday for women in our condition that we will be cured by the lord and the accomplishments of medicine.
Posted 3/1/2012 10:08 PM (GMT 0)
Wow...I just had a diagnosis of invasive lobular breast cancer with bone mets, in November. I found this site and it is so encouraging to read about those who are overcoming!! (I had ovarian cancer 19 years ago, also.) I can relate to everyone's responses...and I want to live my life to the fullest, also, and not let this disease rob me of my joy. I am blessed with wonderful, supportive friends and have faith in God's timing and plan. Looks like the cheering section balcony is crowded and I am glad to know you. I would like to hear from anyone who is on Anastrozole and Zometa, as that is my regimen.
✚ New Topic ✚ Reply
12