Dis Breast Cancer Survivors - GAGWTA!

[NHAnn]

Welcome Monique...I'm so sorry you have to join us....but it does not take very long before you find some positives in your diagnosis and journey. (Hard to believe I know, in the immediate shock and fear of your diagnosis) For me...relationships with fellow survivors are very special relationships that I wouldn't have experienced otherwise!
Support and encouragement you will definitely find here! In particular, laurabelle, one of the "founders" of this thread, was diagnosed in her 30's as well, and is very active in support and education of young (under 40) breast cancer survivors.
Please do feel free to ask/share/vent, whatever.

SillyMe....I'm glad your mom your mom got results she was hoping for!!
Is it Arimidex that she will be on?

GAGWTA!

 

[SillyMe]

Welcome Monique...I'm so sorry you have to join us....but it does not take very long before you find some positives in your diagnosis and journey. (Hard to believe I know, in the immediate shock and fear of your diagnosis) For me...relationships with fellow survivors are very special relationships that I wouldn't have experienced otherwise!
Support and encouragement you will definitely find here! In particular, laurabelle, one of the "founders" of this thread, was diagnosed in her 30's as well, and is very active in support and education of young (under 40) breast cancer survivors.
Please do feel free to ask/share/vent, whatever.

SillyMe....I'm glad your mom your mom got results she was hoping for!!
Is it Arimidex that she will be on?

GAGWTA!

That might be it. I'm not sure of the spelling. It sounded like Remidex or Rimidex.

 

[snappy]

Monique, I am so glad Mom2Ashli and Dan Murphy suggested you post here.
You are not the first survivor others have sent our way.

I know we have at least one survivor in our midst with inflammatory breast cancer (Disney Debbie, I am not sure?) We have a good many ladies who post here and many who obviously have subscribed to this thread. We have come a long way since May of this year.

You will see that this is a good place to ask questions, ask for support and just plain old vent when you need to. We also make time for a few laughs.
This is sort of a super charged breast cancer support group that is available 24/7 instead of once or twice a month.

I am so sorry you have joined us at such a young age. As Ann said, Laurabelle is very active with a group for younger survivors (I am sadly too advanced in age to join 'em, although I do have a 10 year old).

Please feel free to post here whatever concerns you have, or communicate via pm.

You will not find a group of ladies anywhere more ready to research something, give a , listen to fears, whatever.

I hope you derive as much comfort here as I have and do.

Laurie

 

[snappy]

Sillyme, what wonderful news about your mother!!

I am so glad to know about the Oncotype test (never heard of it before).
I think it is neat your mom"s doc commended her for going through with the test. I am thinking it is one that we all should take if there is ANY invasive cancer.

I plan to research it and ask my doc about it.

I talked to my PS's nurse at length today. She was a wealth of info and was very patient with all the questions I sent her by email and a few new ones I sprung on her during the call. It is amazing to me to have this much access.
During the consult there were so many things I did not ask, especially since the latissimus dorsi procedure was not on my radar screen before last Friday.
It so helps to be able to revisit things.

Thanks for listening.

 

[SillyMe]

Sillyme, what wonderful news about your mother!!

I am so glad to know about the Oncotype test (never heard of it before).
I think it is neat your mom"s doc commended her for going through with the test. I am thinking it is one that we all should take if there is ANY invasive cancer.

I plan to research it and ask my doc about it.

I talked to my PS's nurse at length today. She was a wealth of info and was very patient with all the questions I sent her by email and a few new ones I sprung on her during the call. It is amazing to me to have this much access.
During the consult there were so many things I did not ask, especially since the latissimus dorsi procedure was not on my radar screen before last Friday.
It so helps to be able to revisit things.

Thanks for listening.

My mom talked to her oncologist for almost 2 hours in his office. He recommended chemo, she told him she didn't want to do it. He said it was her choice. He did not mention the test until the very end of their 2 hour appt. He said most patients do not bother having the test done and most insurance companies will not pay for it. My mom told him immediately that she wanted it done if it will help her make the decision for chemo. I believe the test costs about $3,500. Her insurance company did pay for it. They said they wish that more patients would choose the test if given the opportunity because it may save them money in the long run, if the patient does not need chemo.

The doctor really commended my mom today on standing her ground and said she made the right decision by having the test done. It seemed to me as though he wasn't very familiar with it himself. I think now he will probably talk more of his patients into having this test done.

You can find the info online. http://www.genomichealth.com/oncotype/about/pat.aspx

 

[Pea-n-Me]

GAGWTA!

Ann, thank you for the information on ER neg BC - I think I'm off that night, I'll definitely have a gander. Congratulations on the birth of your new grandson!

Monique, sorry you had to join our ranks, but glad you found us here. I also have little ones - twins that just turned 8. Right now you are in the scariest period - just diagnosed and more questions than answers. Usually you feel a little better once things start moving. We'll be here with you on your journey. Let us know how you're doing. Is there anything right now we can help you with?

SillyMe, it is good your mother felt strongly she knew what she wanted (well, in this case, knew what she didn't want). It's probably never right to go against what your gut tells you.

I looked at the website. I think it's really important to note in regards to these scores, they're just one tool that can be used in determining therapies, but not the only one. You can have a low score and still get either a recurrence or a mets; and you can have a high score and not. It's not completely predictable and there are never any guarantees. The fact is invasive cancer can be nasty, and sometimes the simplest cases turn bad and the worst cases turn out ok - you never know. But that's why the majority of people choose to go with the chemo, to fight it as hard as you can while you can. But chemo isn't for everyone and individual decisions have to be respected.

(I am actually taking care of an oncologist tonight, I'll ask him his opinion on the oncogene when he wakes up, LOL, and report back later).

Back to work.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Monique- I hate that we have to meet this way, but I'm glad you're here. I don't know if you're in the mood to read yet, but one of my fav. bc sites (out of many) is www.breastcancer.org It's very user friendly. I PMed you with info on my group too.
And I'll say for the 3rd time this early a.m. I'll say, I HATE CANCER!!!

Silly me- I'm so glad to hear your mom's treatment is underway. I hope that test proves to be accurate.
Chemo is not always the way to go, hormonal therapy is very effective in fighting alot of bc. I have sistas who have mets and are only doing hormone therapy and rads, no chemo.

Ann- Congrats on the new grandbaby!!! Wow, 7, I'm impressed!

Dinner was fabulous! I'm still full... We were in a small room upstairs and we had it all to ourselves for a little while. They're already decorated for Christmas, it was really lovely, especially with the fireplace going. Before we ordered dinner, the waiter brought us a little appetizer, swordfish cervece (sp too early to spellcheck) served in a tiny piece of endive, light and flavorful. We went with the waiter's recommendations and hubby and I had a wonderful Sterling Cabernet, and shared a Caesar salad. Then he got rack of lamb, which hubby probably would have never ordered, but the waiter said it won a Zagat award and it was truly delish! I got the Chesapeake, a filet with a crabcake on top...I'm a sucker for crab! Fork tender and scrumptious. Then, we had Nutty Irishes, Frangelico and Irish coffee with lots of thick whipped cream on top. This was really good and not too boozy. Then, (good grief said Charlie Brown!) we shared a creme brulee topped with fresh berries, the best I've ever had! The waiter brought us these beautiful little molasses cookies with the check and hubby and I both cried uncle and took them home to the kids. Oh yeah, and my tummy cooperated, in spite of all the food I was sending it's way! It was a perfect evening!

 

[snappy]

That dinner sounded so so so good, Laura. Glad you posted the details on each course. It sounded like it just kept getting better.

I too absolutely love creme broulee. I bet the addition of the berries really set it off. My favorite place to order it is Commander's Palace in New Orleans. I just love the way they crystalize the sugar on top there. It adds texture to the sweet. I feel like I can actually taste it now. This has been our special restaurant over the years, going with friends, going for anniversaries, work lunches, I even had my going away dinner there when I resigned from my job. It was definitely my Dad's favorite too. He took my mom and my sister there a number of times and we also went there when his brother visited from Texas.

 

[donnabres]

Monique, so sorry to hear about your plight. I too live in MA. What hospital are you going to? I am newly diagonosed, 2 1/2 weeks. Still going thru tests, I think I am more nervous about the tests and the results. I am going to the Faulkner Breast Clinic in W. Roxbury. They are supposed to be one of the best in the country.
Haven't posted since last week, but have been reading and will let you know what's going on.
Ann, I too give my congratulations on your 7th Grandchild. We have 7 too. Ages 13 down to the last 3 are 7 1/2. They are wonderful. 3 girls, 4 boys.
Donna

 

[Christine]

Good Morning All. I thought I would check in to say hello and let everyone know that I am still losing my mind here at home waiting to see the surgeon.

Monique, if you are still reading here, I was just devastated to hear your news. I think I am almost at the point where I can feel how miserable you are. Having had thyroid cancer before, I know how scary the diagnosis can be.

I've been reading and posting over at the message boards at breastcancer.org (someone gave me that link last year when I was going through this). In some ways it is helpful, in other ways it scares me to death reading some of the stories. I guess I'm just really stunned at how young most of the women are.

Anyway, I'm not doing any better at calming myself down. I walk around with a knot in my stomach most of the time, a feeling like I'm going to burst into tears, and high agitation. I feel sorry for my kids because I feel that I'm being very short with them. My DH is off in Mexico on a vacation with his father and siblings so I don't have much help right now. I'm in the mode that I just want to crawl under the covers with a good book and shut out the world. I don't know HOW I will get through a day at the office tomorrow.

I guess the big thing is knowing that surgery is coming up again. After reading at breastcancer.org, I wonder WHY I ever needed an excisional biopsy last year for a 1 cm "benign-looking" lump? Supposedly I am going to one "the best" breast surgeons in my area. What should I ask him. Apparently, I've got a recurrent lump under my scar and another one under the old scar (from 20 years ago). How long and how often do we keep "chipping" away at my body? When is enough enough? This is probably not the question for this thread as all of you are dealing with actual cancer. What should someone do in "benign" situations?

Anyway, I've got all this running through my mind constantly. Plus the whole anger thing. I know this sounds awful, but I can't help thinking about some of the people I know and work with who do "all the wrong things" and nothing ever happens to them. I have always felt that I take care of myself and do all the medically responsible stuff and I feel I have had more than my share of grief. Psychologically, that is really getting to me. Yet, I know these people who smoke, eat to excess, are 50-100 lbs over weight, are into their 60s, and have never had a darn thing happen. I certainly don't wish anyone ill, I just want to cry over the unfairness. Why me??

Well, thanks for listening to my pity party. Sorry.

 

[NHAnn]

Oooh Laura, it sounds like a wonderful dinner!

Newbies from MA...sounds like you are in great hands at Faulkner and Dana Farber!! Again feel free to post questions or concerns or vent.

It was great havign an "extra" day this weekend (I was off Friday). DD came home from school to so some babysitting Friday night...and we did a little shopping Friday afternoon and again yesterday afternoon, nice mother/daughter time

Hope you all had a good one....I took a walk this morning and it was beautiful and though a little chilly! Said a special prayer for you all as I walked....have a nice day!
GAGWTA!

 

[Pea-n-Me]

I'm not doing any better at calming myself down. I walk around with a knot in my stomach most of the time, a feeling like I'm going to burst into tears, and high agitation.

Christine, if it's any consolation I'm sure many if not most of us can completely relate to this feeling. I know I can. You'd think two years later it would have lessened (and it has), but I feel the same way every time I hear or see or hear something sad or scary related to cancer. And since that's almost daily, it makes it hard. I also work with patients who have devastating diagnoses and I tend to take on their emotions too, I can't help it. We've had a lot of oncology patients on our cardiac unit lately.

At my support center they taught us meditation and ways to help calm ourselves down when scary thoughts invade our minds. Unfortunately, I flunked that class. No, seriously, there were times I was able to meditate and bring my mind to a pleasant place, like during chemo and radiation sessions. I was never too good at it in the middle of the night, say, but I do find that reading and DISing help keep my mind occupied.

One thing I liked that they taught us was this, maybe it will be helpful: Close your eyes, relax, and think of yourself standing in a pleasant place of your choosing. Now picture "roots" growing out of your feet and into the ground - in effect "grounding" yourself. As the roots grow you derive strength from the earth. The sun is shining and you can feel the warmth of the sun. It is a beatiful, pleasant day with happiness in the air. Children are laughing, dogs are barking, a boat toots it's horn as it passes by in the lazy river, etc... Smell the popcorn popping and taste that yummy hot dog. Use all your senses. Stay there for a while and enjoy the peace and the strength you're building. What I like about this is that it can be done anywhere, anytime. If you practice it regularly it does help bring a sense of calmness when you feel like you're spinning out of control.

(I am actually taking care of an oncologist tonight, I'll ask him his opinion on the oncogene when he wakes up, LOL, and report back later).

I wanted to say I did talk to my oncologist patient the other morning (his daughter actually had a virulent form of BC in her 30's too). I printed up the info from the Oncogene website and he read through it. He thinks it's a good idea. He said that each case needs to be looked at individually, and likened treatment to having to "get to Main St" - I loved this analogy. We all have a goal of to "getting to Main St" (surviving cancer). Each person along the way may take a different route, but we do what we have to do to get there.

He also said that looking at the individual characteristics of the tumor is something they've always done and is very helpful in formulating treatment plans. And the more they can look at tumor characteristics, the better. For example he said, someone with a lower stage tumor with higher grade tumor cells or a large number of cells or ominous cells (identified by their genes) is just as worrisome as someone with a higher stage tumor with lower grade cells or less in number or less ominous cells. He also thought that cost is going to be a definite factor in gene identification as it moves forward. (I know last time we had the discussion here about oncogenes and micrometastases I asked my oncologist if they took that extra step in identification with mine and she said they did, but that it really didn't matter because their recommendations would have been the same in my case).

Now here's something he said I thought was interesting which I'd never heard before, hopefully I can explain it correctly. (I debated about posting it but thought as I usally try to do that although it's scary, maybe it will be helpful to someone. Warning: if you are a worrier you might not want to read any farther. I am also not claiming this to necessarily be true, but it could be something to think about and ask your own oncologists about).

He explained that when you are staged at the beginning of your illness that stage remains with you. For example, if you are staged at Stage II and later develop a mets you are still a "Stage II with a recurrence", not technically Stage IV. (Does it really matter one way or the other? Probably not, but I had just never heard this before. Has anyone else? I'll have to ask my own oncologist about it). The way he explained it further was that if you have a tumor on your finger and you cut off your finger, the cancer is gone. If you later develop a mets, the distant cancer was there the whole time, even though it didn't show up on tests at the time of staging. I don't know, something about this gave me that familiar knot in my stomach, and I actually left the hospital in tears that morning. I guess I should have told him at the outset of our conversation that I myself was a BC survivor, he didn't know until the end and maybe he wouldn't have been so forthcoming, but nonetheless I found it interesting (btw, when I told him, he got that pained look on his face that we're all too familiar with ). I've thought about this since yesterday morning, and I guess it's why I'm glad I myself had chemo. BTW, Silly Me, he told me his daughter did not have chemo - her invasive tumor was very small but a grade 3 with ominous cells and she elected not to have it (I assume with his guidance; in fact, he had some scary things to say about chemo in and of itself - before he knew about me, of course. That didn't bother me so much, though, because it wasn't anything I didn't already know).

The nurse I drove home with commented how she "couldn't believe" how I could hold my own in this conversation that she overheard with us chatting about staging, grading, genes, tumors, etc, LOL, since those of us in one area of practice don't tend to know a lot about other areas. I told her that, unfortunately, when you get something like this you tend to learn more than you ever cared to know.

I have to say I sincerely hope this post wasn't upsetting to anyone and I apologize if it was.

 

[donnabres]

Christine, I know about that knot in your stomach. mine has not left since I got the call to go have a biopsy. I now have to do an MRI this week sometime. Every test I take I am in a state of panic. I too have to force myself out of bed daily, it would be so much easier just to hide under the covers. I'm worried about when I have the chemo and being nauseus. I know this is spelled wrong. I don't have to wait, it's constant now.
I am so glad to hear that I am not going crazy, and that others feel the same way.
I should be talking to the dr. tomorrow. I just want testing to be done, and get started on the road to recovery. I like the analagy to Main St. I will think of Main St. USA.

Donna

 

[NHAnn]

I like the analagy to Main St. I will think of Main St. USA.

I thought Main St USA when I read that too!!
Speaking of visualization and relaxation...sometimes during radiation I would envision the laser zappers on the Buzz Lightyear ride zapping any sneaky little cancer cells that may have dared to linger after surgery

Linda...again, I thank you from the bottom of my heart for ALL your posts...I for one (though I AM a worrier I read that all through too ) truly appreciate your way of communicating all the interesting details as well as your personal perspective on them.

Christine, I think you were typing as I was and I missed your post this morning. I think we've ALL done some version of our own of the "pity party" at one time or another. I agree with your statement about the reading and posting on places like breastcancer.org are helpful in a way but very scary in way. I do remember one night shortly after my Dx that I was just sitting at the computer reading and crying ...DH came and made me get off, and suggested I focus on my OWN diagnosis, my own cancer, and try to narrow down the sources/resources that I wanted to use in my decision making for treatment. Anyway....it probably doesn't help you feel better, but like Linda said, we all can relate to the feelings of anxiety, anger, and "it's not fair"

 

[Pea-n-Me]

It's funny, he actually used another name of a street, but when I wrote my post Main St just seemed to fit. I never thought of Main St USA but heck, I love it! How fitting - we're all trying to get to Main St USA!

 

[WeluvDisney2]

Monique, you will be in my prayers. These women are incredible. If you need anything, you will find it here. My mother was just diagnosed about two months ago with breast cancer. I have received alot of information and alot of support from the people here. I am very grateful for that.

I do have an update. I just got back from my mom's appointment. The oncologist wanted her to have chemo, which she didn't want to do. She insisted on the new Oncotype test. We got the results today. Her # was 17, which is in the low end for recurrence. The doctor commended her on her decision to go ahead with the test. She does not need chemo. He is starting her on Remidex and she will start her radiation soon.

Thanks SillyMe. I am seeing first hand how wonderful everyone on this thread is. ~Monique

 

[WeluvDisney2]

Welcome Monique...I'm so sorry you have to join us....but it does not take very long before you find some positives in your diagnosis and journey. (Hard to believe I know, in the immediate shock and fear of your diagnosis) For me...relationships with fellow survivors are very special relationships that I wouldn't have experienced otherwise!
Support and encouragement you will definitely find here! In particular, laurabelle, one of the "founders" of this thread, was diagnosed in her 30's as well, and is very active in support and education of young (under 40) breast cancer survivors.
Please do feel free to ask/share/vent, whatever.

SillyMe....I'm glad your mom your mom got results she was hoping for!!
Is it Arimidex that she will be on?

GAGWTA!

Thank you NHAnn, I feel very welcome here.

 

[WeluvDisney2]

Monique, I am so glad Mom2Ashli and Dan Murphy suggested you post here.
You are not the first survivor others have sent our way.

I know we have at least one survivor in our midst with inflammatory breast cancer (Disney Debbie, I am not sure?) We have a good many ladies who post here and many who obviously have subscribed to this thread. We have come a long way since May of this year.

You will see that this is a good place to ask questions, ask for support and just plain old vent when you need to. We also make time for a few laughs.
This is sort of a super charged breast cancer support group that is available 24/7 instead of once or twice a month.

I am so sorry you have joined us at such a young age. As Ann said, Laurabelle is very active with a group for younger survivors (I am sadly too advanced in age to join 'em, although I do have a 10 year old).

Please feel free to post here whatever concerns you have, or communicate via pm.

You will not find a group of ladies anywhere more ready to research something, give a , listen to fears, whatever.

I hope you derive as much comfort here as I have and do.

Laurie

Thank you Snappy. If you know Disney Debbie would you ask her if she would like to PM me? It is wonderful to have others to lean on and ask questions to. It is scary not knowing what to expect. ~Monique

 

[WeluvDisney2]

GAGWTA!

Ann, thank you for the information on ER neg BC - I think I'm off that night, I'll definitely have a gander. Congratulations on the birth of your new grandson!

Monique, sorry you had to join our ranks, but glad you found us here. I also have little ones - twins that just turned 8. Right now you are in the scariest period - just diagnosed and more questions than answers. Usually you feel a little better once things start moving. We'll be here with you on your journey. Let us know how you're doing. Is there anything right now we can help you with?

SillyMe, it is good your mother felt strongly she knew what she wanted (well, in this case, knew what she didn't want). It's probably never right to go against what your gut tells you.

I looked at the website. I think it's really important to note in regards to these scores, they're just one tool that can be used in determining therapies, but not the only one. You can have a low score and still get either a recurrence or a mets; and you can have a high score and not. It's not completely predictable and there are never any guarantees. The fact is invasive cancer can be nasty, and sometimes the simplest cases turn bad and the worst cases turn out ok - you never know. But that's why the majority of people choose to go with the chemo, to fight it as hard as you can while you can. But chemo isn't for everyone and individual decisions have to be respected.

(I am actually taking care of an oncologist tonight, I'll ask him his opinion on the oncogene when he wakes up, LOL, and report back later).

Back to work.

Hi Pea-n-Me. Thank you for your PM. I am looking forward to hearing everyone else's stories. ~Monique

 

[WeluvDisney2]

~~~***GAGWTA sistas***~~~

Monique- I hate that we have to meet this way, but I'm glad you're here. I don't know if you're in the mood to read yet, but one of my fav. bc sites (out of many) is www.breastcancer.org It's very user friendly. I PMed you with info on my group too.
And I'll say for the 3rd time this early a.m. I'll say, I HATE CANCER!!!

Silly me- I'm so glad to hear your mom's treatment is underway. I hope that test proves to be accurate.
Chemo is not always the way to go, hormonal therapy is very effective in fighting alot of bc. I have sistas who have mets and are only doing hormone therapy and rads, no chemo.

Ann- Congrats on the new grandbaby!!! Wow, 7, I'm impressed!

Dinner was fabulous! I'm still full... We were in a small room upstairs and we had it all to ourselves for a little while. They're already decorated for Christmas, it was really lovely, especially with the fireplace going. Before we ordered dinner, the waiter brought us a little appetizer, swordfish cervece (sp too early to spellcheck) served in a tiny piece of endive, light and flavorful. We went with the waiter's recommendations and hubby and I had a wonderful Sterling Cabernet, and shared a Caesar salad. Then he got rack of lamb, which hubby probably would have never ordered, but the waiter said it won a Zagat award and it was truly delish! I got the Chesapeake, a filet with a crabcake on top...I'm a sucker for crab! Fork tender and scrumptious. Then, we had Nutty Irishes, Frangelico and Irish coffee with lots of thick whipped cream on top. This was really good and not too boozy. Then, (good grief said Charlie Brown!) we shared a creme brulee topped with fresh berries, the best I've ever had! The waiter brought us these beautiful little molasses cookies with the check and hubby and I both cried uncle and took them home to the kids. Oh yeah, and my tummy cooperated, in spite of all the food I was sending it's way! It was a perfect evening!

Hi Laurabelle, Thank you I will have to check out that site. I PM'd you will my email address as well. ~Monique