Dis Breast Cancer Survivors Part II -GAGWTA!

[jackskellingtonsgirl]

Terry - YAY!!!!
I am so happy that you got good news today! That's wonderful! I hope you have a fabulous weekend!!!

 

[MerryPoppins]

Yay! It's always so fun to celebrate someone's good news! Please don't be a stranger. You're welcome here anytime. And if we say something you don't understand, just ask. We don't mean to be exclusive.

DH got home this afternoon and took us out to dinner. He felt sorry for me because of my cold, I think. We stopped by the store and he bought some kleenex with lotion for my nose. They feel like heaven. My stupid nose feels like it's about to break off.

The claims adjuster came by this afternoon and totaled our roof. And we need to have someone come out and check the AC unit. He thought the fins could be "combed" but if not, we need a new AC unit due to hail damage as well. So not only are we remodeling, but now we're getting fixed up on the outside, too. It's gonna be like a new house by the time we're done...if we ever get there. The roofer has already been to take a look. We just need to set a date for him to come out and get started.

 

[jackskellingtonsgirl]

I just spoke to Mom. She saw her oncologist yesterday and they decided to stop the Taxol because it is causing lymphedema and neuropathy. They just did blood work yesterday. Next week they didn't schedule anything. The week after next they will give her a "mega dose" of Taxotere and then she will be finished with chemo. The term "mega dose" has me very worried, but I didn't say anything to her about it. They told her she will start radiation after December 19, but she said they may not be able to schedule her for her first dose of radiation until January.

She is kind of on the fence about driving down. She said she will just see how she feels. She missed work 3 days this week.

 

[disneyholic family]

GAGWTA !!!

I just spoke to Mom. She saw her oncologist yesterday and they decided to stop the Taxol because it is causing lymphedema and neuropathy. They just did blood work yesterday. Next week they didn't schedule anything. The week after next they will give her a "mega dose" of Taxotere and then she will be finished with chemo. The term "mega dose" has me very worried, but I didn't say anything to her about it. They told her she will start radiation after December 19, but she said they may not be able to schedule her for her first dose of radiation until January.

this is what happened to my mom too - they had to stop her Taxol and switch her to Taxotere - apparently much easier to handle...
she didn't have any problem with the taxotere.

The taxol hit her really really hard - the neuropathy on her feet was terrible....but the taxotere didn't hurt her at all....so that was a relief...

But as i mentioned she did fine in the long run, and is alive and kicking 5 years later.

The conference sounds great for those trying to decide about reconstruction. Were you allowed time to ask the women questions? That's pretty cool. I wish I'd had time to talk to women before my surgery. I think I might have decided then not to begin reconstruction, rather than starting and then reversing it. Looking back my mother pressured me to have reconstruction because the mastectomy made her uncomfortable. I thought I wanted it too, but now I know I really didn't.

yes you get to ask them whatever you like...
the 'show and tell' is a very informal thing....not part of the "official" conference...
they have it the evening before the conference begins...
they hold it in a large suite of the hotel...
in the living room of the suite, women gathered over refreshments to get to know each other, share stories etc..
the 'show and tell' part of the evening was in the bedroom.....each woman who had volunteered, had an identification tag saying what sort of mastectomy/reconstruction they had had.....and you could look, touch and ask whatever questions your heart desired....

as my sister and i are very conservative and very modest, we were a bit embarrassed to go into the bedroom....but everyone was so nice and it's a very supportive atmosphere.....it was very helpful to my sister...

in the end, she didn't have the prophylactic double mastectomy and she isn't well enough to do it....she probably never will have it because she's too sick from her other cancers.....but it was very helpful to her....

as i mentioned, every different kind of reconstruction was represented, as well as a woman who had chosen not to do any reconstruction...

of course there were also many women at the conference who had had surgery who didn't participate in the show and tell, but they also shared their experiences....

I forgot. I read a beautiful quote that I wanted to share. I'm all about beautiful quotes. They inspire me.

"What you leave behind is NOT what is engraved on stone monuments
but what is woven into the lives of others."

May I continue to add fibers to the tapestries of those around me. And not dull, drab colors, but bright ones. I want to leave a cheerful streak in all the lives around me. Isn't that a nice thought?

i love that quote!!!....really a nice thought...and it's so very very true....

hi ladies I'm hoping some of you wouldn't mind giving me your opinions? My Dr. found a lump under my right arm at my regular check up in October and sent me for a mammo - which I had on Monday. They then sent me for a ultrasound (it was obvious to me the tech could see what the Dr. felt) So today... Dr. calls to tell me that they are referring me to a surgeon for a biopsy. It is 1 cm and kind of oval shaped and they stated on the report that it is not a cyst (no fluid) so I'll be honest... I'm a little nervous and would welcome some input - good or bad. I'm much better if I have some ideas what I could be dealing with... KWIM? Thanks soooo much!!!

hi gemjoy - have you met with the surgeon? scheduled the biopsy?
i'm so sorry you're having to go through this...
hopefully, it will be nothing...

Hi everyone. I am still in the hospital but now have my laptop and wifi access. I am in aprivate room on the cardiac floor and the nurses could not be nicer. They have been really great.

glad to hear they're treating you well...
actually, i would think the cardiac floor is better than the medical floor...
the medical floor has people with contagious diseases doesn't it?...while theoretically, the cardiac floor doesn't...so i would think that's the better place to be....anyway,, hopefully, you'll be out soon....

Hi All- I dont know why Im here. Advice? Just letting it out? I dont know. My MIL was going thru a bunch of tests, and long story short she was told it's BC today. I feel like I should be doing something. I have no idea what! She was pretty broken up on the phone (out of state) and couldnt talk to my hubby other than to say it was cancer, it was bad and she see's a surgeon Monday... then she broke down and had to go. It was literally a 2 minute phone call.
Now... I am wondering what to do to help. (Yes. I am the fixer in the family and know I can not fix cancer. I lost my brother 4 years ago). I think that is what is freaking me out... how terrible and hard it was with my brother. I am reminding myself that he was an extreme case.

I need to feel helpful to her. What can I do at this point?
Thanks for listening.

my mom was diagnosed with stage 3 breast cancer at age 76...
she had chemo, then radiation, then surgery (lumpectomy and removal of all lymph nodes in her left arm)...
she's now 81 and has been cancer free since her treatment...
she travels all over the world and is going strong..

as i mentioned in another post here, for the first year after her treatment, she looked really old to me....like she'd aged 20 years from the treatments...
but about 2 years after the treatment and ever since she was back to her old young looking self.....
her body actually rejuvenated....which surprised me, as i didn't think that was possible at her age....

I did not inherit the genetic mutation. I almost couldn't believe the geneticist when she first told me! In fact, she didn't even wait until we were in the room with the oncologist; she said "The doctor has great news for you! I didn't want you to have to walk down this long hallway to the exam room, having to wonder".

that's GREAT news!!!
i know what you mean about having been prepared for bad news...
i was the same way....i'd already planned on what i was going to do if i was positive (immediately have my ovaries removed and then eventually prophylactic double mastectomy)..

i actually did eventually have my ovaries removed....
i had to have a hysterectomy this past january, so every single doctor told me to get my ovaries taken out at the same time...they all claimed that even without the mutation, at my age ovaries are just ticking time bombs waiting to go off (i'm 53).....so i did.....watching my sister fight ovarian cancer, i'm happy to have had mine out, even if i am negative for the gene mutation...

anyway, great great news....and yes, my sister was also very happy for me that i didn't inherit the gene from my Dad (she did)...

 

[laurabelle]

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

My quote for the day, my mantra if you will, my dream tag... from WALL-E:

"I don't want to survive. I want to LIVE!"

I'm thinking we should be called LIVERS instead of survivors, but then people would picture an organ.

Seaspray- That's the best news!!! I'm so happy for you! I'm glad to hear they didn't make you wait one second longer than necessary to hear it too!

Elizabeth- Sorry the Taxol is messing with your mom so. I have residual neuropathy from it, it's not bad though, but the steroids bring it out more. I'm not sure what they mean about the mega dose of Taxotere either, but maybe it's equivalent to the more normal dosage since she was on a lower dose of Taxol. I know you want her home resting. Is there a back up plan for Thanksgiving if she does listen and stays home to rest? It would be nice if someone would bring her dinner.

I think your plan for hunkering down for the weekend sounds wonderful! We are doing the same here. It's the first weekend in a long time that there is nothing on the calendar. Last night hubby's band played and my oldest dd went to a school function with a friend so my 12 yr old and I watched WALL-E for the first time. We loved it! It's cold here, so I think I'll be making soup, brownies, watching more movies, football tomorrow...the 24 movie is on Sunday night.

I hope you find rest and refreshment with your family this weekend. Praying for your mom's situation...

gemjoy- Thank you for sharing your DH's and your brother's stories. It's a strange coincidence with your brother, I was dxed with BC at age 36 and my dd's were 2 & 4 yrs old at the time. I cannot imagine what a blow it was to have your DH dxed after losing your brother. Yes, it seems like if a family is hit with this beast once you should get a pass! It's natural to feel the way you do, don't beat yourself up over it. Just try the best you can to keep doing life and not allow this to consume you. Cancer has robbed you enough! And if bad news comes, you have an arsenal of weapons...this beast doesn't stand a chance!

teacups- Cancer changes us all, survivors and supporters. I'm sure you will be there for her and help her in ways that go beyond what is evident on the surface. So from all of us survivors, thank you!

Elizabeth and Laurie- Believe me, if I could get hubby on board, I would book two weeks...or longer! He is not the Disney freakazoid I am, not that he balks at going, but 9 days at CSR one year was our longest so far. I'm thinking the location and the situation with the kids and us having time on our own is going to make him wish we were staying longer. But then I can say I told you so and book 2 weeks in 2010!

Whew, I'm sexy. Hey, Pop Daddy hasn't paid us a visit lately...

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

disneyholic family - That is so good to know that your mom did OK with the Taxotere! It sounds like she has made a remarkable recovery! Since that one Taxotere will be Mom's final chemo infusion I hope it goes well. Prior to the Taxol (which was supposed to be 12 infusions, but she only managed to do 8) she had 4 infusions of AC, so this has been a long process.

Laura - I am sure there will be a couple of big family dinners if Mom stays home. Her sister or one of my cousins could invite her over or bring her some food. If she drives down here I don't know what her schdule will be. I told her DH is off Friday and Saturday. I haven't talked to DH about cooking a big dinner on Saturday, but he might want to do that. If he doesn't want to cook we could just take Mom out for a nice dinner. She said my sister's in laws are having their big dinner Saturday, so if she ends up going to that we won't see her at all. She will already be spending the entire day Thursday and Friday with my sister. It makes DS really sad that he isn't a priority for her. If she does drive down I will lie to him and say she stayed home unless I know with 100% certainty that she will spend time with him.

 

[SeaSpray]

I AM SO HAPPY FOR YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That said, please don't feel that you have to go away from us. Just having family that has breast cancer makes this thread a nice refuge! I am so glad you got good news. I was thinking about you today!

Thank you!

Terry - YAY!!!!
I am so happy that you got good news today! That's wonderful! I hope you have a fabulous weekend!!!

Thanks! My weekend is going well so far

Yay! It's always so fun to celebrate someone's good news! Please don't be a stranger. You're welcome here anytime. And if we say something you don't understand, just ask. We don't mean to be exclusive.

DH got home this afternoon and took us out to dinner. He felt sorry for me because of my cold, I think. We stopped by the store and he bought some kleenex with lotion for my nose. They feel like heaven. My stupid nose feels like it's about to break off.

Thanks! I agree that there's nothing like a nice SOFT tissue when you're sick! At work, our employer provides us with boxes of tissues, but they're the not-so-soft kind, so I keep a special box of SOFT tissues on my desk and I pass it to whoever has a cold, in my department. lol The 2 other ladies in my department appreciate them when they have a cold, and the cute thing is that the box has images of Mickey Mouse all over it. LOL (It's a box from a couple of years ago when Kleenex sold the square-size boxes of tissues with Disney images on them; now I just open one end of the box and refill it, and then tape it back up!) LOL

I hope you feel better soon!

that's GREAT news!!!
i know what you mean about having been prepared for bad news...
i was the same way....i'd already planned on what i was going to do if i was positive (immediately have my ovaries removed and then eventually prophylactic double mastectomy)..

i actually did eventually have my ovaries removed....
i had to have a hysterectomy this past january, so every single doctor told me to get my ovaries taken out at the same time...they all claimed that even without the mutation, at my age ovaries are just ticking time bombs waiting to go off (i'm 53).....so i did.....watching my sister fight ovarian cancer, i'm happy to have had mine out, even if i am negative for the gene mutation...

anyway, great great news....and yes, my sister was also very happy for me that i didn't inherit the gene from my Dad (she did)...

I'm glad that you didn't inherit the gene either! It's funny that you mention having your ovaries out, because I'm finding myself thinking that I might still want to have them out (eventually). And just because we don't have the genetic mutation, doesn't mean that we'll never get breast or ovarian cancer. I'm going to talk to my doctor about this....

P.S. The genetic mutation came from our dad's side too. A lot of breast, ovarian, and prostate cancer on his side of the family. Makes sense, now that my sister had the test done; she is the first person (and I was the second) to be tested for it. This is good info for us to pass onto our extended family, and in fact, the oncologist yesterday again went over my family tree with me and said to please make sure that everyone is made aware that the mutation is indeed in our family. My sister has known since July that she carries the mutation, and she did let everyone know immediately about that.

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

My quote for the day, my mantra if you will, my dream tag... from WALL-E:

"I don't want to survive. I want to LIVE!"

I'm thinking we should be called LIVERS instead of survivors, but then people would picture an organ.

Seaspray- That's the best news!!! I'm so happy for you! I'm glad to hear they didn't make you wait one second longer than necessary to hear it too!

I think "LIVERS" is a great way to describe people who have endured cancer and come out the other end! I'm going to tell my sister that she's not only a survivor, but she's a LIVER as well!

And yes...bless the geneticist's heart for telling me as quickly as she did!!!!

 

[snappy]

disneyholic family, your description of how some of the "livers" who have undergone the different types of reconstruction are willing to provide others with questions to see the results in person brought tears to my eyes.

I think this is a great service these wonderful gals are doing. REconstruction is a scary step, I think it is wonderful that the Force members have figured out a way to ease some fears about it.

I am really interested in attending the conference, but it is at a bad time due to final exams for DD13. I still might try and swing it.

Was it your perception that most people there were gene carriers? I don't know if I am in that group but I see a lot of benefits from what the site offers.

My sister is still planning to discuss it with my GYN (my mother's doc too ) when she sees her in January, but it sounds like she has decided after a lot of soul searching to NOT do gene testing. She has no intention of doing prophalactic mastectomies and has no children so she can't see the benefit.

Glad oh so glad to hear your news, seaspray!! It is so nice to hear positive news like that.

JSK, I am glad your mom is getting a break from the chemo. It does not sound like her to have missed 3 days of work. I hope she stays close to home next week and regains her strength. That really would be ideal.

Thanking of you gemjoy. Hang in there. Hope you are taking time to smell the flowers a bit.

IS it cold where y'all are? I think it might have gotten down to 32 last night here, or at least not too far north of us. Does not happen often, but it does seem more like Thanksgiving.

OK, got the Halloween stuff up, and I have DH cleaning windows. Might as well let the sun shine in (it is cold but very clear skies).

I think I just saw our Christmas tree at Winn Dixie. It is about 12 inches tall but fresh and has soft needles. I think I can put it high enough that our year old pup Naj won't try and "nab" it.

Lately, everything is fair game for her (in her eyes only), including DD13's homework!!. I think she is in her terrible two's.

Enjoy your quiet weekend, Laura and JSK!!

Haven't heard from Sha lately, are you doing OK? I bet you are in WDW!!! Say hi to mom for me!!

GAGWTA!!

 

[jackskellingtonsgirl]

Laurie - When I spoke to Mom last weekend she wasn't feeling too bad. I guess she worked Monday and then was out until Friday. I had e-mailed my sister to ask about the lymphedema, but she didn't say Mom had been staying home from work. Maybe she didn't know? I'm not sure who leaves first in the morning. Anyway, Mom said it would be a shame NOT to come down since gas is so cheap right now.

DH went tot he store tonight and bought a turkey and some sweet potatoes. He wants to make a big dinner on Thursday when he gets home from work. He said he will be home early.

I talked to my cousin today. She said I should watch airfare and think about bringing DS up for a couple of days at Christmas. I'll think about it. DH has to work so I would hate to leave him here by himself.

 

[grammynelliebelle]

Just found out my Birad3 mamo is now Bibirad4 and I'll need a bx of right breast. Have an apt with a surgeon on Wed before Thanksgiving. Found this thread and plan to start to read. Also took out the Dr Susan Love Breast Book. Anyone have any thoughts on it? Thanks for all of your posts. Grammy

 

[snappy]

Just found out my Birad3 mamo is now Bibirad4 and I'll need a bx of right breast. Have an apt with a surgeon on Wed before Thanksgiving. Found this thread and plan to start to read. Also took out the Dr Susan Love Breast Book. Anyone have any thoughts on it? Thanks for all of your posts. Grammy

Sorry to hear of the suspicious mammogram. First thing, as we have said here recently, about 80% of biopsies do end up with benign results. So the odds are in your favor. The mammogram as you know is just a diagnostic tool, it is the biopsy that determines everything.

I too went out and bought the Susan Love book after I was
diagnosed. It has a lot of good info including info about biopsies and treatment. I think it is a good source albeit a bit scary since the tone of the book is so matter of fact.

A good online source we recommend here is breastcancer.org.

From personal experience, I will tell you my diagnostic mammorgram was birad 4, and I had DCIS. My sister's was the same (same year, same time frame, 2004), she had benign results.

I am glad you found our thread. Please feel free to ask away, and if we can help, we will. Sorry you have to be going through this especially right before the holidays. It is never a good time.

Good luck and hope to hear more from you.

GAGWTA!!!

 

[disneyholic family]

GAGWTA!!!

GAGWTA, Ladies!

disneyholic family - That is so good to know that your mom did OK with the Taxotere! It sounds like she has made a remarkable recovery! Since that one Taxotere will be Mom's final chemo infusion I hope it goes well. Prior to the Taxol (which was supposed to be 12 infusions, but she only managed to do 8) she had 4 infusions of AC, so this has been a long process.

yes my mom also had 4 rounds of AC first...
then when the taxol was too hard for her, she was switched to taxotere..
and then the oncologist decided to add some more AC at the end...
yes it is a very very long process....but there is a light at the end of the tunnel...
things will get better..

disneyholic family, your description of how some of the "livers" who have undergone the different types of reconstruction are willing to provide others with questions to see the results in person brought tears to my eyes.

I think this is a great service these wonderful gals are doing. REconstruction is a scary step, I think it is wonderful that the Force members have figured out a way to ease some fears about it.

I am really interested in attending the conference, but it is at a bad time due to final exams for DD13. I still might try and swing it.

Was it your perception that most people there were gene carriers? I don't know if I am in that group but I see a lot of benefits from what the site offers.

My sister is still planning to discuss it with my GYN (my mother's doc too ) when she sees her in January, but it sounds like she has decided after a lot of soul searching to NOT do gene testing. She has no intention of doing prophalactic mastectomies and has no children so she can't see the benefit.

there were lots of people like me - those who had tested negative but were there in support of others who were positive..

and there were also a lot of people who had tested negative, but who had had cancer and their doctors are convinced that they have some sort of mutation for which there is no test....

and there were also those there who refuse to be tested, despite a known mutation in their family....

and of course there were those there who had been tested and had tested positive...

 

[grammynelliebelle]

Thanks Snappy for your reply. Im going to read through some of the thread tonight and also look at Dr Loves book. It is pretty clinical, but I hope it helps me to formulate my questions for the doctor. Grammy

 

[lookingforward]

Hi everyone. I am still in the hospital....and getting a bit depressed about the entire thing! Hopefully I will bust out of here today or tomorrow but looks like I will have to have IV antibiotics for a while. They are going to try and just use a regular IV access and not do the pic line. We'll see. I can't complain about the care, the nurses and PCT's have been really great. I just feel beat up from all the tests, ivs, etc. I wonder when it will all be done. Finishing reconstruction was kind of like graduation and now I feel like I am back in kindergarten.

Hope all of you are doing well. Wishing great outcomes for those waiting for test results or undergoing treatment!

Oh wow, its only 30 minutes till I get my breakfast tray! Fun times!

 

[laurabelle]

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

Maureen- I know there's incentive to get patients home for the holidays, so you have that on your side. I hope it's sooner though...

grammynelliebelle- I'm sorry you have to go through the biopsy. I prefer the www.breastcancer.org site for up to date info. It's very user friendly. I hope they can give you the results soon.

I wrote a longer post and it disappeared. ugh

 

[Pea-n-Me]

I wrote a longer post and it disappeared. ugh

Me too, sorry.

Congratulations to those who got good test results, and offering prayers for all who need them.

Thinking of everyone on this Thanksgiving Week. Very thankful for the friendship and support we've found here.

GAGWTA

 

[laurabelle]

Thanks Linda. I'm so grateful for our GAGWTA friendships!

I'm trying not to freak out waiting for my labs to come back from the endocrinologist, but of course the closer I get the more it's in the forefront. I had to give hubby the lowdown on what ugly things they are looking for in my test that is causing the hypercalcemia. Since the dr. ruled out parathyroid, it's either going to be cancer or something rare. I am betting on something rare!!!

 

[snappy]

grammynelliebelle, you sound like me, I read all I could, I am an info seeker. Not that I don't trust the docs, but I do sometimes challenge them. I actually think the docs appreciate the patients that have armed themselves with info.

Nothing happens without informed consent.

Let us know how the visit goes this week.

Laura, I did not realize the implications of your diagnostic test with the endo. We are waiting with you, girl.

Maureen, I am glad you are satisfied with the care you are getting, sorry you are still confined. Hopefully, you will get out soon and get on with things.

I am thankful for all of you ladies too. I get that you will be there for me through thick and thin.

I'll return the favor.

 

[jackskellingtonsgirl]

Hi everyone. I am still in the hospital....and getting a bit depressed about the entire thing! Hopefully I will bust out of here today or tomorrow but looks like I will have to have IV antibiotics for a while. They are going to try and just use a regular IV access and not do the pic line. We'll see. I can't complain about the care, the nurses and PCT's have been really great. I just feel beat up from all the tests, ivs, etc. I wonder when it will all be done. Finishing reconstruction was kind of like graduation and now I feel like I am back in kindergarten.

Hope all of you are doing well. Wishing great outcomes for those waiting for test results or undergoing treatment!

Oh wow, its only 30 minutes till I get my breakfast tray! Fun times!

Maureen, I hope they decide to discharge you soon!!

Laura, hoping for a good outcome from the endo tests!

Lots of hugs and good wishes to all!

 

[gemjoy]

Hi everyone!

Well, I have my appointment scheduled for December 9th at 10:45. This is to meet with the surgeon for an exam and consultation. I'm anxious and nervous etc... but mostly I just want to find out what I'm dealing with. She is a highly recommended and a very well respected breast surgeon/specialist.

Please forgive me girls... I'm still getting to know everyone here and even though I don't mention everyone by name I wish each of you well and thank you all for your comments and willingness to share stories and information!

Maureen ~ I hope you are discharged from the hospital soon & glad to hear the staff is treating you right! Take care!

Laura ~ I'm sorry to hear you're anxiously awaiting your endo results... think good thoughts and keep us posted! I'm sending you...