Newbie looking for good news
My sister is 63, I'm 52. Last year she had stage 2, underwent mastectomy and is on a hormone inhibitor. She didn't require radiation or chemo based on PET and lymph nodes. She is very positive but I'm scared from what I've read online about stage 4 survival rates.
Does anyone out there have some good stories? It's after midnite, the decadron got my restless and I can't sleep. Thanks for listening.
Comments
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Lacey
So sorry for the reason you're here, but I'm very glad you found us. You will find a great deal of information, support, and even laughter here.
I was not Stage 4, but there are several women here who were diagnosed with Stage 4 many years ago and are still here to support and inspire all of us. I'm sure you will hear from some of them as well. Try not to be too scared by the statistics. Statistics are just numbers... we are people.
I want to wish you well in your treatments. Chemo is no fun, but it is doable, and we will be here to help you through this. Drink plenty of water and take you anti-nausea meds even if you don't feel like you need them. Take good care of yourself.
Cindy0 -
Cindy, Thanks so much forcindycflynn said:Lacey
So sorry for the reason you're here, but I'm very glad you found us. You will find a great deal of information, support, and even laughter here.
I was not Stage 4, but there are several women here who were diagnosed with Stage 4 many years ago and are still here to support and inspire all of us. I'm sure you will hear from some of them as well. Try not to be too scared by the statistics. Statistics are just numbers... we are people.
I want to wish you well in your treatments. Chemo is no fun, but it is doable, and we will be here to help you through this. Drink plenty of water and take you anti-nausea meds even if you don't feel like you need them. Take good care of yourself.
Cindy
Cindy, Thanks so much for the encouragement. I'm sitting here, trying to drink my water and stay away from the scary cancer websites. At least the PET only showed liver involvement and I'm otherwise pretty healthy. Of course, going to chemo helped put things into perspective as I saw some folks dealing with some devastating problems. I ordered a Raquel Welch wig and it came today. I really like the color and style. My husband has shaved his head for 2 years and we're going to have a head shaving party soon. I'm so lucky to have him, very supportive!
I feel a little better reading the posts here. I think this is where I need to be. Thanks to all!0 -
Hi Laceylacey1 said:Cindy, Thanks so much for
Cindy, Thanks so much for the encouragement. I'm sitting here, trying to drink my water and stay away from the scary cancer websites. At least the PET only showed liver involvement and I'm otherwise pretty healthy. Of course, going to chemo helped put things into perspective as I saw some folks dealing with some devastating problems. I ordered a Raquel Welch wig and it came today. I really like the color and style. My husband has shaved his head for 2 years and we're going to have a head shaving party soon. I'm so lucky to have him, very supportive!
I feel a little better reading the posts here. I think this is where I need to be. Thanks to all!
Welcome to the board. Sorry for the reason, but I an sure you will find support and help here. I have had stage IIIC two years ago. I has mastectomy, Chemo and radiation. There are several stage IV sisters and I am sure they will respond to your post. Please keep the hope.
Hugs,
New Flower0 -
Hi Lacey,
Some doctors
Hi Lacey,
Some doctors considered me stage 3b because I had inflammatory BC, which is what they normally stage IBC. However, I tested positive for all lymph nodes on left and right breast, so some doctors said I was stage 4. Anyway, that was 10 years ago July 26. I am happy to say, I have been cancer free for 9 years now. It is very easy to get discouraged. I remember looking on the internet and it said my survival rate was 2%. I had 1 doctor tell me I had about 3 to 5% and if I did the bone marrow transplant, it would up my chances to 35 to 40%. I did the bone marrow transplant by the way. I was willing to do whatever it took to get better. I do remember everytime I went to a different doctor, they would just shake their head and say it doesn't look good. One doctor told me to get my affairs in order. The morale to my story is, doctors and statistics do not have the final say. And moreover, they are not even always right in their educated guesses. Only God has the final word, and he decides when it is your time. I think a positive attitude helps, but I think even the most positive people have bad days when it comes to this stuff. I decided that their was not a whole lot of things I could control when it came to cancer, so I tried to control what I could like my eating habits, excercising, visualization, removing chemicals from my home, and lots of praying. Everything else, I gave to God and said ok I can't worry about this anymore, so I am giving it up to you. I know this is a tough time and I can barely force myself to think about those days of chemo, but I got through it and I appreciate my life more than ever now. I hope this helps. God Bless0 -
Nancynancyrsmith said:Hi Lacey,
Some doctors
Hi Lacey,
Some doctors considered me stage 3b because I had inflammatory BC, which is what they normally stage IBC. However, I tested positive for all lymph nodes on left and right breast, so some doctors said I was stage 4. Anyway, that was 10 years ago July 26. I am happy to say, I have been cancer free for 9 years now. It is very easy to get discouraged. I remember looking on the internet and it said my survival rate was 2%. I had 1 doctor tell me I had about 3 to 5% and if I did the bone marrow transplant, it would up my chances to 35 to 40%. I did the bone marrow transplant by the way. I was willing to do whatever it took to get better. I do remember everytime I went to a different doctor, they would just shake their head and say it doesn't look good. One doctor told me to get my affairs in order. The morale to my story is, doctors and statistics do not have the final say. And moreover, they are not even always right in their educated guesses. Only God has the final word, and he decides when it is your time. I think a positive attitude helps, but I think even the most positive people have bad days when it comes to this stuff. I decided that their was not a whole lot of things I could control when it came to cancer, so I tried to control what I could like my eating habits, excercising, visualization, removing chemicals from my home, and lots of praying. Everything else, I gave to God and said ok I can't worry about this anymore, so I am giving it up to you. I know this is a tough time and I can barely force myself to think about those days of chemo, but I got through it and I appreciate my life more than ever now. I hope this helps. God Bless
What an inspirational post you wrote. Thank you for sharing that. I'm sure it helped to put Lacey's mind at east a bit. 9 years surviving that - awesome
Thanks for being an inspiration.
Best of luck to you Lacey. Chemo certainly is no fun, and neither (in my experience) is the head-shaving part. I had my husband shave mine last week & while I'm getting used to it - i still don't like it. But, you roll with the punches, deal with the not so fun stuff, and do what you have to do to get better. You're in my thoughts & prayers.
*hugs*
Heather0 -
Nancy said it beautifully!nancyrsmith said:Hi Lacey,
Some doctors
Hi Lacey,
Some doctors considered me stage 3b because I had inflammatory BC, which is what they normally stage IBC. However, I tested positive for all lymph nodes on left and right breast, so some doctors said I was stage 4. Anyway, that was 10 years ago July 26. I am happy to say, I have been cancer free for 9 years now. It is very easy to get discouraged. I remember looking on the internet and it said my survival rate was 2%. I had 1 doctor tell me I had about 3 to 5% and if I did the bone marrow transplant, it would up my chances to 35 to 40%. I did the bone marrow transplant by the way. I was willing to do whatever it took to get better. I do remember everytime I went to a different doctor, they would just shake their head and say it doesn't look good. One doctor told me to get my affairs in order. The morale to my story is, doctors and statistics do not have the final say. And moreover, they are not even always right in their educated guesses. Only God has the final word, and he decides when it is your time. I think a positive attitude helps, but I think even the most positive people have bad days when it comes to this stuff. I decided that their was not a whole lot of things I could control when it came to cancer, so I tried to control what I could like my eating habits, excercising, visualization, removing chemicals from my home, and lots of praying. Everything else, I gave to God and said ok I can't worry about this anymore, so I am giving it up to you. I know this is a tough time and I can barely force myself to think about those days of chemo, but I got through it and I appreciate my life more than ever now. I hope this helps. God Bless
We are not statistics. On top of that, the recent research has produced several new drugs for treating Stage IV cancer as a chronic condition. I have several women in my support group who are Stage IV and living full lives. Those who are not retired are working full time and two are raising young children. It isn't always easy especially when well meaning friend and family say insensitive things or their own fears take them over, but that's what the support group is for. I am not stage IV but every bc survivor worries that some day we will be and we can really appreciate how difficult that diagnosis must be. My advise is to "turn-off" any negative messages. If your doctors aren't hopeful, get different ones. One woman in my group, changed doctors for that reason and now sees an oncologist who is also the head of research at Yale New Haven Hospital. This doctor said that she has never felt more positive about the research going on now with BC. Hope is important with our recovery. Keep the faith. I believe you will be around for a very long time. Hugs.
Roseann0 -
we are not numbers
Dear Lacey,
Sorry you had a reason to find this site and welcome. Remember that the research deals in numbers and does not predict for individuals in that study or generalize to everyone else with the same or similar diagnosis. We are all different and there are many factors to consider. No study can consider every factor that impinges on our health and prognosis. You will find many on this site who have been given similar news by their doctors who are living active and meaningful lives many years later. Take one day at a time and roll with the punches. It is a bumpy ride but well worth what we get out of it, life with our fanily and friends. We are here to support you.
Hugs, K0 -
Lacey--Hope you find comfort from this wonderful board of womenKayNYC said:we are not numbers
Dear Lacey,
Sorry you had a reason to find this site and welcome. Remember that the research deals in numbers and does not predict for individuals in that study or generalize to everyone else with the same or similar diagnosis. We are all different and there are many factors to consider. No study can consider every factor that impinges on our health and prognosis. You will find many on this site who have been given similar news by their doctors who are living active and meaningful lives many years later. Take one day at a time and roll with the punches. It is a bumpy ride but well worth what we get out of it, life with our fanily and friends. We are here to support you.
Hugs, K
I did. I'm Stage 3C, IDC with 10 out of 23 positive lymph nodes. I've had a lumpectomy, re-excision, axillary node dissection, 6 rounds of TAC chemo and 33 rads. Just finished rads a couple of weeks ago. I'm still worn out, sore, swollen, but try to continue my positive, fighting spirit.
Nancy's post was incredibly inspirational. I get so much comfort from the wonderful survival stories here. The ladies are right--statistics are just numbers. We all do what we can to fight this demon, and then it's in God's hands.
Praying for the best for you, Lacey. You've come to the right place for love and unconditional support. Keep checking in.
Hugs, Renee0 -
In Ballparkmissrenee said:Lacey--Hope you find comfort from this wonderful board of women
I did. I'm Stage 3C, IDC with 10 out of 23 positive lymph nodes. I've had a lumpectomy, re-excision, axillary node dissection, 6 rounds of TAC chemo and 33 rads. Just finished rads a couple of weeks ago. I'm still worn out, sore, swollen, but try to continue my positive, fighting spirit.
Nancy's post was incredibly inspirational. I get so much comfort from the wonderful survival stories here. The ladies are right--statistics are just numbers. We all do what we can to fight this demon, and then it's in God's hands.
Praying for the best for you, Lacey. You've come to the right place for love and unconditional support. Keep checking in.
Hugs, Renee
Hi Lacey!
I'm in the same ballpark as you but a different section (I was Stage 1 over two years ago). Welcome and sorry you have to be here but this is a positive, hopeful place to be so I'm sure all the good vibes we are all sending will rub off on you. I thought Nancy had the best advice ever. Stay strong and fight hard.
Hugs, Sally0 -
welcomeMiss Murphy said:In Ballpark
Hi Lacey!
I'm in the same ballpark as you but a different section (I was Stage 1 over two years ago). Welcome and sorry you have to be here but this is a positive, hopeful place to be so I'm sure all the good vibes we are all sending will rub off on you. I thought Nancy had the best advice ever. Stay strong and fight hard.
Hugs, Sally
Just wanted to say welcome. This is a safe haven. We can't fix stuff, but we can listen, uplift, commiserate, hold cyber hands, and wait with you when you're waiting.
Welcome.
Victoria0 -
Welcome Lacey.
So glad you
Welcome Lacey.
So glad you found us, so sorry about the reason. I am stage 3 IBC. There will be plenty of ladies that will come on and post with stage 4. Many that have been survivors for many years. Nance said it best. She is a real inspiration. What a warrior. Take care and remember we are all here for you. To talk, vent when you need or want to. Advise, support what ever you need just holler OK. Take care Kay0 -
Lacey
glad you found this wonderful website but I'm deeply sorry for the reason. My sister had DCIS 9 years ago at age 48. She may have it again in the other breast now. You will have responses from several stage IV posters here who are all in the fight to survive. You sound very brave and be sure to know that there is so much research going on and we are all great listeners. Keeping you in my thoughts and prayers as you go on this bc journey.
{{hugs}} Char0 -
Welcome Lacey1!
You will find encouragement here!! So sorry for what you are going through!
As for reading all the stats about stage 4...STOP! It's not gonna do anything but make you scared. It's good to be informed, but too much information can make you nuts! Remember...everyone is unique and just because you have stage 4 doesn't mean it's all doom and gloom!
My mom's best friend had stage 4 with 12 positive nodes 13 years ago!! She's still around and doing GREAT! You can beat it! Stay positive. Don't read too much and don't be afraid to ask for help:)
You will have MANY cheerleaders on this board! You CAN and WILL get through this!:)
Blessings,
Sally0 -
Pull up!
Pull up out of that tailspin, I'm in the cockpit with you and refuse to go down without a fight. The first thing you have to do is find that inner strength (none of us really know we have it until we're faced with something like this). My diagnosis came in February: Metastasized breast cancer - many lymph nodes, LIVER, bones, and skin - Stage IV.
It is frightening and overwhelming! The difference is that I got a complete diagnosis before ever meeting with a surgeon or oncologist, thus no surgery possible.
Then I got busy with my own research as I too had to know exactly what I was dealing with. That also is very scary! The numbers (percentages, odds, etc.) are devastating to read. So...I decided I was going to try my damnedest to beat this. As long as I'm able, I will not give in.
From the pre-chemo drugs you named, I guess one of your drugs is Taxol, and because you are HER2+, I assume you'll be getting either Herceptin or Tykerb. Do you mind telling what your
treatment is? Are you actually in a study or a drug trial? According to my oncologist there are a few promising clinical trials going on right now for HER2+.
I'm happy that your sister is being very positive about her cancer and believe you'll be there soon. No cancer can be taken lightly but even though your sister is older than you, remember there is quite a gap between her diagnosis and your Stage IV. It's very understandable how devastated you feel right now! I really do know what it's like. I'm right between you and your sister, at 58 years of age. I've always been very healthy.
I was going to try to keep this short but there really was no way to do that. If I or anyone else can be of help, please ask. Others who read here have seen me write this before but there are 4 little words I'd like to stress to you, they are: HOPE, FAITH, LOVE, and COURAGE.
Keep all of these in your daily life and you WILL find that inner strength!
Please write again. God bless us all.
Marsha0 -
P.S.Marsha Mulvey said:Pull up!
Pull up out of that tailspin, I'm in the cockpit with you and refuse to go down without a fight. The first thing you have to do is find that inner strength (none of us really know we have it until we're faced with something like this). My diagnosis came in February: Metastasized breast cancer - many lymph nodes, LIVER, bones, and skin - Stage IV.
It is frightening and overwhelming! The difference is that I got a complete diagnosis before ever meeting with a surgeon or oncologist, thus no surgery possible.
Then I got busy with my own research as I too had to know exactly what I was dealing with. That also is very scary! The numbers (percentages, odds, etc.) are devastating to read. So...I decided I was going to try my damnedest to beat this. As long as I'm able, I will not give in.
From the pre-chemo drugs you named, I guess one of your drugs is Taxol, and because you are HER2+, I assume you'll be getting either Herceptin or Tykerb. Do you mind telling what your
treatment is? Are you actually in a study or a drug trial? According to my oncologist there are a few promising clinical trials going on right now for HER2+.
I'm happy that your sister is being very positive about her cancer and believe you'll be there soon. No cancer can be taken lightly but even though your sister is older than you, remember there is quite a gap between her diagnosis and your Stage IV. It's very understandable how devastated you feel right now! I really do know what it's like. I'm right between you and your sister, at 58 years of age. I've always been very healthy.
I was going to try to keep this short but there really was no way to do that. If I or anyone else can be of help, please ask. Others who read here have seen me write this before but there are 4 little words I'd like to stress to you, they are: HOPE, FAITH, LOVE, and COURAGE.
Keep all of these in your daily life and you WILL find that inner strength!
Please write again. God bless us all.
Marsha
About the Decadron - the first 2 weeks of chemo, I was getting 20mg and only sleeping about one to two hours each night. Just before my third infusion, I told my onc and he said we can't do without it but he cut it in half. Immediately I started getting about 4 hours of sleep nightly and little by little even that got better. You might ask your doc.
Marsha0
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