Dis Breast Cancer Survivors Part III - GAGWTA!

[Pea-n-Me]

Since part II was closed and Laurabelle is on hiatus, I'll go ahead and begin Part III.

Here's how we started:

~~~***GAGWTA sistas***~~~
Est. May 7, 2005

Pea-N-Me (Linda) and I were talking about getting some of us together somehow...anyway, I found this cool clipart when I joined the Dis and have shared it with a few other Dis survivors. I wanted to post the clip art for those of you who are bc survivors, and want to identify yourself, to add to your signature line...

Go to User CP, click on Edit Signature, then copy and paste the following, leaving out the spaces I added at the beginning and end of the address:

If you're still having trouble, the folks on the Technical Board are very helpful!

What the heck is GAGWTA???
It's our little buzz phrase to avoid hurting feelings when we respond to only a few posts specifically when we drop in...
Originally Posted by NHAnn

~GAGWTA~ (Greetings and good wishes to all!)

Here's Part I of this thread: http://www.disboards.com/showthread.php?t=810357

And Part II: http://www.disboards.com/showthread.php?t=1710007&referrerid=70088
__________________

 

[CherylDan]

GAGWTA!!!

Just wanted to pop in for a quick hello. I know I've been MIA lately, just really busy. But in a good way, so life is good!

Sending out hugs and pixie dust to all in treatment

 

[honugirl]

GAGWTA all!

I'm glad to hear from the other thread that Alice's surgery went well. Snaps for her!

I'm now on my 5th cold since February. I don't know if one of the little rugrats on the 4th was harboring something or where I picked it up, but I'm sick again. I've spent the better part of 5 months getting a cold, in the middle of one, or just ending one, not to mention the 3 weeks of sinus issues I had after surgery. I knew that Cushing's took a toll on your immune system, I just didn't know how badly. Makes me scared to have the adrenals taken out because if I continue to be sick like this, I'll never leave the hospital.

My mom and I watched So you think you can dance and Top Chef Masters tonight. I love Tyce Diorio on SYTYCD, he was a guest judge tonight. He's so cute.

Also I love chef John Besh and he was on Top chef masters tonight, so it was a good TV watching night.

My mom and I are going to camp outside in a little bit. The ISS (international space station) is supposed to come over at around 11:30, so hopefully we'll get to see it.

Hugs for all!

 

[Aliceacc]

Hi ladies!

I've been up since 3 am... I got tired of sleeping on my back. I caught the end of a great The West Wing episode, then they switched to infomercials.

So I've been online since! I figure I'll nap later in the day.

All is well. I'm a tiny bit sore, but nothing requiring any meds.

 

[Sha]

Aliceacc what episode was it for West Wing? I need to get those disks. I have my fav. episode on my iPod.

Hi Cheryl Dan! Glad things are good!

Did you get to see the ISS, Honugirl?

 

[snappy]

Hey everyone!!

Glad you all found the new thread.

Thanks for starting it Linda.

Alice, glad your pain is minimal. Hope you get some rest later.

Honugirl, summer colds are the worst.

Hey Cheryl, how is the puppy?

Anyone still planning a September WDW trip?

 

[luvmarypoppins]

Good morning sistas, o.k. some of you have been up for hours already!!

Alice - so glad to hear your surgery went well. Hope you are feeling much better today.

Lisa - Did you see the ISS?

Cheryl - We need a puppy picture

Linda - have a great trip

I will pop in later to give you a little update on wether ds passed his driving test or not. Lets just say dh took him for a little practice last night. I told him I couldnt do it because I need to keep my blood pressure down before the surgery. I asked dh how it went, he said fine if you dont count the 2times we almost died. He said his nerves were shot and he collapsed into his lazy boy recliner and went to sleep!! I will also know later what time the surgery wil be, but then with this dr. I will add a few hours if its after lunch.

GTAGWTA. Blessings to you all.

 

[Aliceacc]

SHA, it was the one where John Goodman takes over as President after Zoe's kidnapping.

LMP-- for him to joke about it, and then nap, your son must have done fine. Wish him luck from us.

 

[snappy]

Good morning sistas, o.k. some of you have been up for hours already!!

Alice - so glad to hear your surgery went well. Hope you are feeling much better today.

Lisa - Did you see the ISS?

Cheryl - We need a puppy picture

Linda - have a great trip

I will pop in later to give you a little update on wether ds passed his driving test or not. Lets just say dh took him for a little practice last night. I told him I couldnt do it because I need to keep my blood pressure down before the surgery. I asked dh how it went, he said fine if you dont count the 2times we almost died. He said his nerves were shot and he collapsed into his lazy boy recliner and went to sleep!! I will also know later what time the surgery wil be, but then with this dr. I will add a few hours if its after lunch.

GTAGWTA. Blessings to you all.

LMP, step away from the car. . . your son's car that is.

 

[Pea-n-Me]

Oh, hey, glad everyone found their way over.

I couldn't imagine why Webmaster Kathy was stopping by. (Glad it wasn't anything serious.) We'll have to pay more attention to the # of pages this time, I wasn't sure what the exact # was before it has to close (250).

Hopefully mommaU4 will find us here.

GAGWTA

 

[Tuffcookie]

luvmarypoppins wrote:
I asked dh how it went, he said fine if you dont count the 2times we almost died. He said his nerves were shot and he collapsed into his lazy boy recliner and went to sleep!!



(Tell John I feel his pain!)

TC

 

[honugirl]

Did you get to see the ISS, Honugirl?

I believe we did see it. It was cool. It was like a big white light zooming across the sky. My mom at first kept trying to convince me that a plane was the ISS. I kept telling her it wasn't. She didn't believe me until it turned and landed at the airport.

Honugirl, summer colds are the worst.

It's killing me. It's been 5 months of nonstop cold or sinus issues. GRRRRRRRR. I was hoping that I'd get to take a month off....


Anyone still planning a September WDW trip?

I was, but now it looks like I can't go. It looks like I'll be getting my next set of scans done and having surgery. I just don't have the energy to go now. Maybe next year...

Lisa - Did you see the ISS?

Yup, it was way cool!

NASA Skywatch

Check here to see if it'll be in your area over the next few days.


I will pop in later to give you a little update on wether ds passed his driving test or not. Lets just say dh took him for a little practice last night. I told him I couldnt do it because I need to keep my blood pressure down before the surgery. I asked dh how it went, he said fine if you dont count the 2times we almost died. He said his nerves were shot and he collapsed into his lazy boy recliner and went to sleep!! I will also know later what time the surgery wil be, but then with this dr. I will add a few hours if its after lunch.

GTAGWTA. Blessings to you all.

Good luck to your son!

 

[golfgal]

My cousin had a double mastectomy on Tuesday. I am trying to find some more information about her cancer but don't know what it is called. Her story is that during a routine mammogram they found a suspicious area, they did a biopsy and discovered cancer. They went in to do a lumpectomy and were not able to find any more, figured they got it all with the biopsy since it was pretty small. They looked at the first lymph node and didn't find any cancer there so they thought she was pretty clean and would do radiation. About a week later they had reviewed the lymph node to find that there was cancer there. After more testing (and this is where my details get fuzzy) found a more rare kind of cancer that is more of a smooth cancer or a sheath that covers tissues that isn't detectable on a mammo? Does this sound familiar? I have been googling but without a name not much has come up other then general info.

 

[Pea-n-Me]

My cousin had a double mastectomy on Tuesday. I am trying to find some more information about her cancer but don't know what it is called. Her story is that during a routine mammogram they found a suspicious area, they did a biopsy and discovered cancer. They went in to do a lumpectomy and were not able to find any more, figured they got it all with the biopsy since it was pretty small. They looked at the first lymph node and didn't find any cancer there so they thought she was pretty clean and would do radiation. About a week later they had reviewed the lymph node to find that there was cancer there. After more testing (and this is where my details get fuzzy) found a more rare kind of cancer that is more of a smooth cancer or a sheath that covers tissues that isn't detectable on a mammo? Does this sound familiar? I have been googling but without a name not much has come up other then general info.

Nothing's coming out at me right now as far as names of types, but I'll add some links at the end that will show you the most common types.

A couple of things I will add about your story. Thank God she had docs and pathologists that were so thorough, and who all seemed to effectively communicate all the necessary information so she could get proper treatment. It sounds like it could have easily slipped through the cracks if even one thing piece of the communication trail was missed. Score one for the docs.

My first thought when hearing the words "rare" and "difficult to see" on mamm was inflammatory BC, but you did say they saw a spot initially on mamm, so I'm not sure that would be it.

One thing that can be said with some certainty is that there was definitely a component of invasive cancer since it spread locally to the lymph node. This doesn't happen if it's non-invasive (which means it's contained, or encapsulated, and that type does not usually warrant chemo). So she is probably looking at chemo to treat any cells that may have escaped and spread elsewhere in her body when the cancer was in the lymph system.

HTH and here are some links:

http://www.breastcancer.org/symptoms/types/

http://www.nationalbreastcancer.org/About-Breast-Cancer/Types.aspx

http://www.mayoclinic.com/health/breast-cancer/HQ00348

BTW the exact names of the type of cancer she has will be listed on both the biopsy report and the final pathology report.

 

[Aliceacc]

My cousin had a double mastectomy on Tuesday. I am trying to find some more information about her cancer but don't know what it is called. Her story is that during a routine mammogram they found a suspicious area, they did a biopsy and discovered cancer. They went in to do a lumpectomy and were not able to find any more, figured they got it all with the biopsy since it was pretty small. They looked at the first lymph node and didn't find any cancer there so they thought she was pretty clean and would do radiation. About a week later they had reviewed the lymph node to find that there was cancer there. After more testing (and this is where my details get fuzzy) found a more rare kind of cancer that is more of a smooth cancer or a sheath that covers tissues that isn't detectable on a mammo? Does this sound familiar? I have been googling but without a name not much has come up other then general info.

I'm sorry, no, I have no idea.

But send your cousin here. The women on this thread have been the absolute best source of realistic info of any I've found. (They're the ones who told me to get a sports bra that zipped up the front after my mastectomy.)

She doesn't have to be a Disney fan, but send her over.

In the meantime, you're doing a great thing trying to dig out more info for her. But be cautious-- there's SO MUCH info out there that's incredibly intimidating. Have her ask her oncologist for the name again-- you're less likely to stumble onto something close but not quite correct.

Best wishes to her!

 

[luvmarypoppins]

Good evening ladies

Golfgal - Your cousin is blessed to have someone as caring as you. Prayers for all the best for her in the days ahead.

Lisa - Hope your cold symptoms will be bearable.

Well I am back to tell the tale. I should preface by saying that ds21 took ds17 on a little practice before we left. He came in and said ds17 hit the mailbox. I said quit joking around. He said, no, I am serious.. Hmm, a sign of things to come. The inspector ds got seemed nice enough. Thought it strange that ds arrived back before the car in front of him since they go in a line etc. Well he told me he failed and she told him to "come back when you learn how to drive" Needless to say he was devestated., So devestated that when we got home he finished what was left in 2 gallons of ice cream. I think the rules are that you have to wait 30 days to retest and then you may wait even longer if the site is booked etc. Well that does put a little bump in things. I was honestly thinking he would have my van and drive himself to work. I dont think I will be allowed to drive for a while, I was not the last time for about at least 2 weeks. sigh, sigh. Also got the call, my surgery will be at 1 pm, so I have to be there at 11 am. They told me I am his only patient tomm. That is strange in and about itself. I thought they usually book the place for the whole day. They also told me, because I asked , that he has to wait for the surgeon before him to be done in that room and they will also tell me what floor I am going to. Well I am going to put in my request for 18, yeah, like I have anything to say about it. I will definetely freak out if they say 15 and I will say it loud, because I dont care, that is the floor where I almost died. Dh actually had to help them push my bed into the elevator because they were doing absolutely nothing to help me etc. So say some prayers and I will try to bring the laptop in 1 day if dh can.

GTAGWTA, Blessings to you all. (Keep it quiet around here sistas, cause I dont want to miss all the fun while I'm away o,k.,

 

[golfgal]

I'm sorry, no, I have no idea.

But send your cousin here. The women on this thread have been the absolute best source of realistic info of any I've found. (They're the ones who told me to get a sports bra that zipped up the front after my mastectomy.)

She doesn't have to be a Disney fan, but send her over.

In the meantime, you're doing a great thing trying to dig out more info for her. But be cautious-- there's SO MUCH info out there that's incredibly intimidating. Have her ask her oncologist for the name again-- you're less likely to stumble onto something close but not quite correct.

Best wishes to her!

I am sure she knows what it is, I just haven't gotten the details yet. She has a masters in Nurse Midwifery, is an RN and is working on her PhD in nursing education so I am fairly confident she knows a lot about it . The thing that scares me the most about this is that they can't see it on a mammogram-which makes them useless in this case.

Pea--I will check out those links, thanks.


OK-I checked out the links and from the information I got it sounds most like inflammatory BC but I don't know for sure. I will ask to her next time I see her. I wonder if they caught it before it started changing the skin, etc.??

 

[Aliceacc]

Did they also do a sonogram?

 

[golfgal]

Did they also do a sonogram?

No idea? Maybe. Most of the information I have is 3rd hand through my sister who has been keeping everyone updated via Email. This has all happened in the past 2 weeks and we were on vacation all of last week.

 

[Aliceacc]

I had a phyllodes tumor-- they're really rare, the pop up out of nowhere and they're large.

So we started with a mamography and went right to a sonogram so they could get accurate measurements.