Advanced diagnosis scaring me to death, plus CA 15-3 is up

LC815

Hi everyone. I'm new. Linda, 48 years old. Story in a nutshell: Mastectomy, chemo in 2004. Tamoxifen until March 2009. Off meds until new lump found 9/09. "Routine scan" a month ago, after lumpectomy shows liver mets, sub-centimeter. Ooopherectomy two weeks ago, Arimidex now.

I can barely get through the day with this diagnosis. I can barely see the monitor right now. I've got three teenaged girls, 17, 16 and 13 and a wonderful boyfriend, but he lives in NC (thank God he's here today). Thank goodness the girls are with their dad so they don't have to see what a mess I am.

The girls know that my cancer came back, but they don't know about the spread. I just don't know how to tell them while I feel so horrible.

Yesterday, my oncologist called and my CA 15-3 is up from 150ish to 300ish. He warned me that it could go up since we just started the treatment, but I am so down.

If this post seems scattered, it's just indicative of my life.

Help. Please.

TraciInLA

Linda,
I just wanted to welcome you here and assure you that you've found the right place for support and encouragement.

My diagnosis is very different from yours, but the ladies on this board are the best resources there is -- others will post soon with their wisdom and advice from their experiences.

I'm so sorry for what you're having to go through now -- just when you probably thought you were done with fighting this disease -- and for how frightened and overwhelmed you must feel. For now, please know you're not alone.

Traci

LC815

TraciInLA said:

Linda,
I just wanted to welcome you here and assure you that you've found the right place for support and encouragement.

My diagnosis is very different from yours, but the ladies on this board are the best resources there is -- others will post soon with their wisdom and advice from their experiences.

I'm so sorry for what you're having to go through now -- just when you probably thought you were done with fighting this disease -- and for how frightened and overwhelmed you must feel. For now, please know you're not alone.

Traci

Thanks, Traci. I do feel
Thanks, Traci. I do feel very alone most of the time as I'm keeping such a brave face for my kids.

Mostly, thanks for jotting a note. I feel better knowing that you reached out.

lynn1950

Hi Linda, How crushing to
Hi Linda, How crushing to sail along for five years and then, WHAM! Of course you feel horrible. On the bright side, the mets have been found early and your cancer is treatable. Please be just as aggressive about your emotional health as your physical. There are women on here with recurrence and mets who will help and share with you. I am so sorry. xoxoxoxoxo Lynn

Marcia527

I can understand how that
I can understand how that would be a hard pill to swallow. I was diagnosed in 2003 and ended treatment in 2004. I went off medication the end of 2007. I had a radical modified mastectomy on right side. That is the fear we all have that it will return. There are others here with mets that have lived with it for years. New treatments are being found. Hang in there. Talk to your girls when you feel better but they are old enough that they should know. You know them best so maybe start with no details and let them ask the questions. That's what I would do.

LC815

Marcia527 said:

I can understand how that
I can understand how that would be a hard pill to swallow. I was diagnosed in 2003 and ended treatment in 2004. I went off medication the end of 2007. I had a radical modified mastectomy on right side. That is the fear we all have that it will return. There are others here with mets that have lived with it for years. New treatments are being found. Hang in there. Talk to your girls when you feel better but they are old enough that they should know. You know them best so maybe start with no details and let them ask the questions. That's what I would do.

daughters
Thanks, Marcia. I did tell them the cancer came back and that I had the lumpectomy. They were thrilled that I wasn't going to need chemo, just radiation. (Which, after the scan, they decided I didn't need -- although now that I'm typing this, I'm wondering why." Then, yesterday, oncologist started talking chemo since we don't know if the hormone therapy is working.

The girls are so internet-savvy, that I feel like if I tell them anything, they'll start googling and finding out some very heavy information that I don't know if they can handle. I know I can't handle it.

LC815

lynn1950 said:

Hi Linda, How crushing to
Hi Linda, How crushing to sail along for five years and then, WHAM! Of course you feel horrible. On the bright side, the mets have been found early and your cancer is treatable. Please be just as aggressive about your emotional health as your physical. There are women on here with recurrence and mets who will help and share with you. I am so sorry. xoxoxoxoxo Lynn

Lynn, thanks for reaching
Lynn, thanks for reaching out. I feel a tiny bit connected to something positive when I see that little number next to my post. You make a good point about being aggressive about my emotional health. I'm just not sure how to go about that. I guess being here is a start.

TraciInLA

LC815 said:

daughters
Thanks, Marcia. I did tell them the cancer came back and that I had the lumpectomy. They were thrilled that I wasn't going to need chemo, just radiation. (Which, after the scan, they decided I didn't need -- although now that I'm typing this, I'm wondering why." Then, yesterday, oncologist started talking chemo since we don't know if the hormone therapy is working.

The girls are so internet-savvy, that I feel like if I tell them anything, they'll start googling and finding out some very heavy information that I don't know if they can handle. I know I can't handle it.

The internet
That's a good point, Linda, about being afraid that your daughters will start googling on their own -- but maybe use this as a way to teach them a little about discerning googling.

When I was first diagnosed, both my surgeon and oncologist forbade me to look at any site except the ACS' site. They talked about how other sites may have unreliable, inaccurate, and/or unverifiable information, but also emphasized how, when you put something out on the internet, it can stay there indefinitely -- cancer treatment has changed so much, the information may have been good, accurate information at the time, but may now be totally out of date.

So I would suggest maybe talking about some of these issues when talking with your daughters.

Traci

jennytwist

Welcome!
So sorry you have to go through this! I was dx in March 2009 - had surgery - chemo and am now on tamoxifen. I know what you are going through is our most dreaded nightmare. I'm sure there are many of the other sisters on this site who can be encouraging and help - having been through it even more than twice.
Just know - you are not alone! We are all here for you - no matter anything! I'm keeping you in my thoughts and prayers!
-much love,
Jenny

roseann4

TraciInLA said:

The internet
That's a good point, Linda, about being afraid that your daughters will start googling on their own -- but maybe use this as a way to teach them a little about discerning googling.

When I was first diagnosed, both my surgeon and oncologist forbade me to look at any site except the ACS' site. They talked about how other sites may have unreliable, inaccurate, and/or unverifiable information, but also emphasized how, when you put something out on the internet, it can stay there indefinitely -- cancer treatment has changed so much, the information may have been good, accurate information at the time, but may now be totally out of date.

So I would suggest maybe talking about some of these issues when talking with your daughters.

Traci

Hi LC815!
I have a client who's wife found a lump on the same side as her previous breast cancer 10 years prior. It was not on her breast but about a food down from her underarm. He's a doctor. He said, "I just hope if it's cancer it is a reoccurance of her breast cancer because that is treatable". I was shocked with his answer but he went on to say that for many women Stage IV breast cancer can be treated as a chronic condition and his wife could survive for many, many years. During those years, there will be more and better treatments available which could extend her life further. With many other cancers, that is not the case. I'm sure this conversation sounds odd because it did to me, too.

I'm passing that on because I thought it was encouraging and he is a doctor at Yale New Haven Hospital. He works with a women who has been living and working with Stage IV breast cancer for 14 years. She is a nurse practicioner. Her children are now grown and one of them was recently married. Her children were young when she was diagnosed and she feared that she would not be around to see them grow up.

That said, none of us knows what the future will bring...healthy today or not. My cancer was found at Stage 1 but I'm sure there are many who were diagnosed at Stage 1 who are Stage IV today. Cancer is sneaky. My plan is to enjoy each day and to appreciate all my blessings while I have them.

On another note, there are stories of people who went into "spontaneous remission" and are cancer free years later. Never give up hope. My uncle was diagnosed with pancreatic cancer (5% cure rate) and told he had 2 years to live. He had what treatment they had to offer then went about his "happy" life. He lived 12 good years! In those years, he traveled and played golf whenever he could. He was in his 80s and passed away of heart failure with his wife at his side.

I'm sure you will have lots of life ahead of you. We all fear that cancer will take our tomorrows. Let's not give it our todays.


Hugs.

Roseann

LC815

roseann4 said:

Hi LC815!
I have a client who's wife found a lump on the same side as her previous breast cancer 10 years prior. It was not on her breast but about a food down from her underarm. He's a doctor. He said, "I just hope if it's cancer it is a reoccurance of her breast cancer because that is treatable". I was shocked with his answer but he went on to say that for many women Stage IV breast cancer can be treated as a chronic condition and his wife could survive for many, many years. During those years, there will be more and better treatments available which could extend her life further. With many other cancers, that is not the case. I'm sure this conversation sounds odd because it did to me, too.

I'm passing that on because I thought it was encouraging and he is a doctor at Yale New Haven Hospital. He works with a women who has been living and working with Stage IV breast cancer for 14 years. She is a nurse practicioner. Her children are now grown and one of them was recently married. Her children were young when she was diagnosed and she feared that she would not be around to see them grow up.

That said, none of us knows what the future will bring...healthy today or not. My cancer was found at Stage 1 but I'm sure there are many who were diagnosed at Stage 1 who are Stage IV today. Cancer is sneaky. My plan is to enjoy each day and to appreciate all my blessings while I have them.

On another note, there are stories of people who went into "spontaneous remission" and are cancer free years later. Never give up hope. My uncle was diagnosed with pancreatic cancer (5% cure rate) and told he had 2 years to live. He had what treatment they had to offer then went about his "happy" life. He lived 12 good years! In those years, he traveled and played golf whenever he could. He was in his 80s and passed away of heart failure with his wife at his side.

I'm sure you will have lots of life ahead of you. We all fear that cancer will take our tomorrows. Let's not give it our todays.


Hugs.

Roseann

Thanks for the hugs
Dear Roseann,

What wonderful stories! Thanks for sharing them with me. They were a good pick-me-up. I need to make "never give up hope" my mantra. I think I should just repeat it to myself a thousand times a day.

A doctor friend of mine says, "If there's a 1-5% cure rate, why can't you be in the 1-5%?"
Some days I feel strong enough to strive for that. In fact, when I was in my oncologist's office, I remember being very confident!

I love your "Let's not give it our todays" comment. It certainly is taking THIS day. I need to shake myself.

xoxo,
Linda

LC815

jennytwist said:

Welcome!
So sorry you have to go through this! I was dx in March 2009 - had surgery - chemo and am now on tamoxifen. I know what you are going through is our most dreaded nightmare. I'm sure there are many of the other sisters on this site who can be encouraging and help - having been through it even more than twice.
Just know - you are not alone! We are all here for you - no matter anything! I'm keeping you in my thoughts and prayers!
-much love,
Jenny

I could use all I can get!
Dear Jenny,
Thank you for writing. I feel so much better today than I did yesterday before I got to this site. You all are wonderful.

I'm still teary, but some of them are tears of gratitude, so it's not all bad.

Love, Linda

LC815

TraciInLA said:

The internet
That's a good point, Linda, about being afraid that your daughters will start googling on their own -- but maybe use this as a way to teach them a little about discerning googling.

When I was first diagnosed, both my surgeon and oncologist forbade me to look at any site except the ACS' site. They talked about how other sites may have unreliable, inaccurate, and/or unverifiable information, but also emphasized how, when you put something out on the internet, it can stay there indefinitely -- cancer treatment has changed so much, the information may have been good, accurate information at the time, but may now be totally out of date.

So I would suggest maybe talking about some of these issues when talking with your daughters.

Traci

The internet
Thanks, Traci. That's very good advice. I hadn't thought about the "expiration date" of information. The ACS site is very encouraging. I have found it to be a lifeline.

xo, Linda

RE

I am glad you found us!
Linda I have had to deal with being told I have cancer now 3 different times, it is never easy to hear and it has always brought on the tears and dismay your reaction is normal. Please contact your oncologist as soon as possible and explain how distressed you are, there are meds they can give you to help you deal better with your present situation.

I have read where some have mentioned that on can live a long time with mets and that certainly can be true. I would suggest to heart to heart with your onco. After each dx before I left the office I wanted odds, percentages numbers I could understand and I wanted to know what is the treatment plan and how soon can we attack it. You have done this before and you can do it again, even in your weary state you sound strong to me! My doctor once told me that cancer is a kin to a chronic illness that we have to treat aggressively from time to time. My first cancer dx was 97 stage 2 my odds were good 85% in my favor, then in 98 it came back with mets to the chest wall and sentinel node my odds dropped to 35% survival and I was now a stage 4. Treatment was rough but I did it with the love of my family (my kids were teenagers at the time) and friends. I went on for 9 years without a glitch, in 07 it came back as a stand alone not related to the others cancer in the other breast. I had a mastectomy and more chemo, I have been cancer free again now for 2 years and 3 months, there is hope.

Linda please come back often we are here for you and you are most certainly not alone. We have walked in your shoes and we understand how you feel. Remember the longer we stay alive the closer they get to the cure!

HUGS

♥ RE ♥

LC815

RE said:

I am glad you found us!
Linda I have had to deal with being told I have cancer now 3 different times, it is never easy to hear and it has always brought on the tears and dismay your reaction is normal. Please contact your oncologist as soon as possible and explain how distressed you are, there are meds they can give you to help you deal better with your present situation.

I have read where some have mentioned that on can live a long time with mets and that certainly can be true. I would suggest to heart to heart with your onco. After each dx before I left the office I wanted odds, percentages numbers I could understand and I wanted to know what is the treatment plan and how soon can we attack it. You have done this before and you can do it again, even in your weary state you sound strong to me! My doctor once told me that cancer is a kin to a chronic illness that we have to treat aggressively from time to time. My first cancer dx was 97 stage 2 my odds were good 85% in my favor, then in 98 it came back with mets to the chest wall and sentinel node my odds dropped to 35% survival and I was now a stage 4. Treatment was rough but I did it with the love of my family (my kids were teenagers at the time) and friends. I went on for 9 years without a glitch, in 07 it came back as a stand alone not related to the others cancer in the other breast. I had a mastectomy and more chemo, I have been cancer free again now for 2 years and 3 months, there is hope.

Linda please come back often we are here for you and you are most certainly not alone. We have walked in your shoes and we understand how you feel. Remember the longer we stay alive the closer they get to the cure!

HUGS

♥ RE ♥

Hope
Dear RE,

I'm so glad you read my note and responded. Your fight gives me courage and energy. Part of my problem has been my need to know percentages, odds, etc. I ask all of those questions, I just don't like what I hear. My oncologist is affiliated with Johns Hopkins and he's one of Maryland's best, and he's a straight shooter. When I asked him, "What's the worst case scenario?" He responded with, "Years, but any number I give you is too small when you're forty-eight years old." No sugar coating.

I am enjoying a bit of relief from Ativan, but I might need to take it more. I usually try to ration it out since my GP only gives me twenty a month.

How did you discuss your recurrence with your teenagers? That's one of my biggest problems right now.

xoxo,
Linda

RE

LC815 said:

Hope
Dear RE,

I'm so glad you read my note and responded. Your fight gives me courage and energy. Part of my problem has been my need to know percentages, odds, etc. I ask all of those questions, I just don't like what I hear. My oncologist is affiliated with Johns Hopkins and he's one of Maryland's best, and he's a straight shooter. When I asked him, "What's the worst case scenario?" He responded with, "Years, but any number I give you is too small when you're forty-eight years old." No sugar coating.

I am enjoying a bit of relief from Ativan, but I might need to take it more. I usually try to ration it out since my GP only gives me twenty a month.

How did you discuss your recurrence with your teenagers? That's one of my biggest problems right now.

xoxo,
Linda

TEEN AGERS
My situation was a bit unique because cancer runs rampant in my family so they were used to it. Their grandma had been dealing with it all of their lives. By the time I got it they viewed cancer as a chronic illness that required treatment that would make me sick then I would get well again. I will tell you that I just gave them the basics, I told them I had cancer and I was going to have treatment. I never told them I was a stage 4, they did not know this until recently. It was best that way, they had enough on their plate just being teenager. We worked as a family unit to get better. We had chemo weekend where we cleaned the house like crazy so I would not have to worry about it while down, we had open discussions and above all we tried to go on as normally as possible.

I am glad your doctor is a straight shooter they are best ones to have. Just remember you are not a number you are LINDA and your situation is unique to you, dig in your heels and fight!!!!


HUGS

♥ RE ♥

tasha_111

RE said:

TEEN AGERS
My situation was a bit unique because cancer runs rampant in my family so they were used to it. Their grandma had been dealing with it all of their lives. By the time I got it they viewed cancer as a chronic illness that required treatment that would make me sick then I would get well again. I will tell you that I just gave them the basics, I told them I had cancer and I was going to have treatment. I never told them I was a stage 4, they did not know this until recently. It was best that way, they had enough on their plate just being teenager. We worked as a family unit to get better. We had chemo weekend where we cleaned the house like crazy so I would not have to worry about it while down, we had open discussions and above all we tried to go on as normally as possible.

I am glad your doctor is a straight shooter they are best ones to have. Just remember you are not a number you are LINDA and your situation is unique to you, dig in your heels and fight!!!!


HUGS

♥ RE ♥

Hi Linda
I am 48 too. My son was 14 when I was DXd and he took it just great, I was just honest with him but played it down a fair bit.. I am so sorry for this nightmare you are going through AGAIN! It just isn't fair. Anyway Huge Healing Hugs to you and I am so glad you found us. Jxxxxxxxxxxxxx

LC815

tasha_111 said:

Hi Linda
I am 48 too. My son was 14 when I was DXd and he took it just great, I was just honest with him but played it down a fair bit.. I am so sorry for this nightmare you are going through AGAIN! It just isn't fair. Anyway Huge Healing Hugs to you and I am so glad you found us. Jxxxxxxxxxxxxx

Hi Tasha
I've been that way with my girls, too. Facts, but nothing overwhelming. It's exhausting keeping up the brave face, though. It all comes down to one question, "Are you going to die?" This time, I told my middle girl that none of us has a crystal ball and that my doctors and I are doing our best to beat the crap out of it. That seemed to satisfy her . . . for now.

LC815

RE said:

TEEN AGERS
My situation was a bit unique because cancer runs rampant in my family so they were used to it. Their grandma had been dealing with it all of their lives. By the time I got it they viewed cancer as a chronic illness that required treatment that would make me sick then I would get well again. I will tell you that I just gave them the basics, I told them I had cancer and I was going to have treatment. I never told them I was a stage 4, they did not know this until recently. It was best that way, they had enough on their plate just being teenager. We worked as a family unit to get better. We had chemo weekend where we cleaned the house like crazy so I would not have to worry about it while down, we had open discussions and above all we tried to go on as normally as possible.

I am glad your doctor is a straight shooter they are best ones to have. Just remember you are not a number you are LINDA and your situation is unique to you, dig in your heels and fight!!!!


HUGS

♥ RE ♥

LOVE
Dear RE,

I love what you wrote: "You are not a number, you are LINDA and your situation is unique to you." I might print that out and tape it to my mirror one of these days. In any case, I'll be back here to read it again and again. And I will try to dig in my heels and FIGHT!

I agree with you on not telling the kids the the cancer is "Stage IV." My middle daughter asked me that, and I truthfully answered that the doctors had not given me that information. I tried to explain that Stage IV means so many things to so many different people that doctors don't like to slap that label on it.

My oldest is a Senior in HS, and I don't want her to limit her college choices based on my health. My middle is the sensitive one, the one who can see through my fake cheer on a bad day. My youngest is only thirteen. She's the one I worry about the most. The other two are on their way out of adolescence, but she just got in!

Peace and thanks again,
Linda xoxo

Deb1969

LC815 said:

LOVE
Dear RE,

I love what you wrote: "You are not a number, you are LINDA and your situation is unique to you." I might print that out and tape it to my mirror one of these days. In any case, I'll be back here to read it again and again. And I will try to dig in my heels and FIGHT!

I agree with you on not telling the kids the the cancer is "Stage IV." My middle daughter asked me that, and I truthfully answered that the doctors had not given me that information. I tried to explain that Stage IV means so many things to so many different people that doctors don't like to slap that label on it.

My oldest is a Senior in HS, and I don't want her to limit her college choices based on my health. My middle is the sensitive one, the one who can see through my fake cheer on a bad day. My youngest is only thirteen. She's the one I worry about the most. The other two are on their way out of adolescence, but she just got in!

Peace and thanks again,
Linda xoxo

Hello...I also have breast
Hello...I also have breast cancer with mets to my liver. I was diagnosed in August of this year, I was 39. My life has been a whirlwind. I come to this site several times daily for inspiration and hope. The ladies here have comforted me so much with their posts. Stay strong and keep positive.
Prayers to you.
Deb

LC815

Deb1969 said:

Hello...I also have breast
Hello...I also have breast cancer with mets to my liver. I was diagnosed in August of this year, I was 39. My life has been a whirlwind. I come to this site several times daily for inspiration and hope. The ladies here have comforted me so much with their posts. Stay strong and keep positive.
Prayers to you.
Deb

What a crappy club we're in, huh?
Hi Deb,
I was diagnosed about a month after you. My boyfriend said to me today, "Geez, I can't believe it's almost Thanksgiving, where did October and November go?" Oh, I know exactly where they went . . . in that whirlwind you mentioned!!
Prayers back to you.
Linda