Dis Breast Cancer Survivors - GAGWTA!

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Wow. A lot happened around here while I was away! My trip was lovely.

I'm anxiously awaiting news about Beth. I'm praying for all with concerns and offering thanksgivings for all with good news.

GAGWTA!
 
Another BC survivor saying hello. I was dx about this time last year. I had 8 rounds of neoadjuvent chemo, a lumpectomy and rads. I'm now on herceptin and tamoxifen. It was a very long year!!!

I actually found the Disboards because of the bc. I decided we'd take a honking big expensive vacation when I was done with treatment. Disney World was the obvious choice as I have two small kids. What was great about Disney is that it's so complicated. :teeth: All those nights when I couldn't sleep worrying about everything, I could get up and research Disney World to take my mind off things.

We went in February and it was fabulous. Expensive, but fabulous.

Bubbleprincessmom, you have a lot on your plate, but you are going to be fine!!!
 
Welcome back, Merry. Glad you had a lovely trip. :wizard: Would love to hear more about it if and when you have time to post. Yes, it's been a difficult time around here, we've all been upset and concerned about Beth. :worried:

Just back from seeing the surgeon. I knew there was a reason I really like that man. :teeth: He greeted me by saying, "So, I see you've had every test under the sun, but still have undiagnosed abdominal pain that's likely to be your gallbladder. What you need is a HIDA scan"! :rotfl2: :rotfl2: (I'm laughing because I'd asked the GI doc last year about having one and he said I didn't need it; instead I had chest and abdominal CTs, abdominal MRIs, an endoscopy, upper GI series, bloodwork, and even bone scans :rolleyes: ). He added a comment which I thought was pretty funny: "If you hear hooves, look for a horse, and not a zebra". :rotfl: My sentiments, exactly (though I know they have to think about all angles). [A HIDA scan will show the function of my gb and they will also give me something through an IV which repoduces the pain in a diseased gb.]

In the meantime, when he pushed on the area of my right side that hurts, I nearly jumped off the table. He also touched the exact area of my back that hurts without my telling him where it hurts. Says it "looks, smells, sounds and feels" like classic gallbladder disease, but wants to confirm gb function with this HIDA scan because if you take out a gallbladder that's healthy, your risk of having longterm retractable diarrhea is more likely than if your gb is diseased. Not to mention the fact that I don't care to have any surgery I don't absolutely need.

Of course, he did mention that we could do a PET scan. :guilty: But he said that where I've had all those tests both in 03 and again last summer, not to mention this pain began before I was even diagnosed with cancer, it would make it more unlikely it would be something more ominous (though obviously not out of the realm of possibility). But right now we'll look for the horse ;) so we start with another ultrasound tomorrow morning, then the HIDA later on, and take it from there.

Laura, he brought up an interesting point about gallbladder disease after chemo, blood transfusions, and some other treatments (which you mentioned the other day and I've been curious about, too). He said that sometimes these types of treatments can cause "breakdown of blood cells" that somehow cause development of "micro stones" in the gallbladder. When studied, they do not look like classic gallbladder stones; instead they are black and form a "sludge" which can cause the same type of pain that regular gallstones cause. Interesting. :idea: This could explain why we know so many people who've experienced this type of pain after treatment. I'll have to google it someday.

Thanks for listening. On the one hand I'm kind of upset a HIDA scan wasn't done before. But OTOH, I'm kind of glad I had those tests last year too, even though it was very scary at the time. I'm just going to look forward from here. For whatever reason, I was meant to take the course I'm now on.

Laurie, I am excited about the photo book - you can see what one looks like on www.shutterfly.com It took a long time to do, but I think it will be worth it. I use an HP 3.1MP digital camera, it's about 4 years old and has taken quite a beating. I've dropped it many times so the shutter doesn't always open all the way but you can't tell at the time you're taking the picture. I suppose I should try to get it fixed. DH was going to just buy me another on EBay, there was one selling for $1 believe it or not :blush: but we let it slip by. I myself like the HP, over the years I've finally learned how to really use it, and I like the pictures it takes (when the shutter is open). If I buy again I will probably get another HP if the operating buttons are similar since learning another all over again would be difficult.
 
Welcome, Pigeon! Congratulations on your survivorship, and glad you had a great vacation! :Pinkbounc

I could have written your post, minus the herceptin and tamoxifin, and I was dx'd in 2003. I think there is no better way to celebrate life and the end of treatment than to go on a nice Disney vacation! I myself did bookend cruises at the beginning and end of my treatment - it gave me something to dream about, focus on and plan, all year during those horrible sleepless nights.

Hope to see you here more often! :sunny:
 

:wizard: Welcome, Pigeon!!! Glad you found us here on our Survivor thread. Note: to Tag fairy, we need yet another survivor tag, pretty please. What a year you have had!! Glad you have come out the other side. How was WDW in February? Your first trip from the sounds of it. I am betting it won't be your last.

I have said it before, but it bears repeating. The docs should be able to write a script for WDW vacations and the insurance companies should be required to cover them. It would ALMOST be worth it to have cancer.

Linda, it sounds like you are on the right track with this doc. So tomorrow is the ultrasound first and then the HIDA later in the day or later meaning later on another day?

I winced when you described the pain you felt when he examined you. I sure hope this can be diagnosed so that pain will be HISTORY!!!
 
:welcome:~~~***GAGWTA sistas***~~~:welcome:

Pigeon- I'm so glad you found us...and Disney therapy too! pixiedust: It's still my favorite distraction...I'm not going this year, which still seems unreal to me as we have gone 3-4 x/yr in the past 4 yrs!!! I have other things planned though, plus I'm trying to be better with my $ :rolleyes1 But, I'm planning on 2007 as this will be our 10th year visiting WDW! ::MickeyMo

bubbleprincessmom- Sending good thoughts and prayers for you! Yes, try to only focus on what you know, not what could be! My sister told me last night that as she was having her last mammogram sent to another doc (for something unrelated to her breasts) and she was told it showed microcalcifications and no one even mentioned it to her! It said benign on the report, but I still think anything that shows up, she should know about. I told her now that she knows, stay on it, it's probably just "normal breast changes" but you have to be your own advocate for your health. Let us know how it goes for you...

Laurie- I'm so happy to hear Claudette is home!!! :Pinkbounc

Linda- I'm glad you're getting the scan done. It sounds like he knows his stuff. Interesting about the gb/chemo connection...see, it's NOT all in our heads! lol!:crazy:

MerryPoppins- Welcome home! I'm glad you had such a magical trip!:tink:

:grouphug:
 
I have said it before, but it bears repeating. The docs should be able to write a script for WDW vacations and the insurance companies should be required to cover them. It would ALMOST be worth it to have cancer.
:rotfl:

I have been so lucky to have absolutely incredible doctors (the kind I didn't know existed) and great insurance coverage, but nobody offered me this script! I'll have to tease my oncologist about it the next visit. He's such a doll that he'd write one for sure if he could.

Disney in February was wonderful. I had been a couple of times when I was a kid, but that was a long time ago--the last trip they were just building EPCOT. We aren't normally big vacation takers. I'm sort of a homebody by nature and am fundamentally too cheap! But Snappy, you are right, I'm already thinking about when we should go back.

You know, for all the fabulous rides and attractions, it's the little things that just charmed me. We were in front of an ice cream place in one of the parks, and a garbage can started "walking" around and talking to the kids. We also encountered the most amazing tree/vine woman in Animal Kingdom just out striking poses and twining around people and lamp posts. Those things will stick with my kids for life.

I'd never heard about a connection with gall bladder problems and chemo but why doesn't it surprise me? Chemo seems to leave it's little footprints everywhere else. I was done with chemo in August, but I'm still fatigued all the time. On the bright side, I have enough hair now that the wig is just an uncomfortable memory. :teeth:
 
I know what you mean about the "little things", Pigeon. I just had my digital pictures printed yesterday from the trip I took In January with DD10. It reminded me of some of the neat "little things" that happened to us that we had not done before (we have been 6 times previously since 2002).

In Animal Kingdom this time we ran in to Guitar Dan. This fellow walks around with his guitar and sings personalized songs to whoever he runs into (mostly kids). He asks them a couple questions, their first names,where they're from, what they like to do for fun, etc. It was so comical. He really had fun with DD10, her red hair, and her favorite sport (soccer), etc. we ran into him later at a little stage area next to the petting zoo and he where he was doing a show, and he continued with the funny banter.

Another neat thing happened one night when we went on the Jungle Cruise again for the 4th time or so. DD10 knew all the joke responses, heck, she even knew all the jokes period. The cruise captain, said, here, you drive. So she "guided" the boat through the river. She really loved it. We also rode on the double decker bus that goes down main street, for some reason we have never taken a ride on any of those vehicles. She also had her face painted at Animal Kingdom (it was a flamingo face). The girl who did it was a true artist, she did an amazing job and DD10 basked in all the compliments she got from kids and adults the rest of the day.

We also found a water fountain in EPCOT that had a running dialogue with us. Unlike the talking tree and talking trashcan at AK (we saw those this trip too), it's responses were all canned but it still was fun. After we walke away, we watching the expressions on people's faces who walked up to it to drink and had the thing start talking to them. It was priceless.

We rode Expedition Everest the preview weekend. So many folks, both guests and CM's saw the lanyard they gave us and asked us about the ride.
Made us feel pretty special.

On a previous trip we saw Miss Devine in AK too. I have a picture of her with DD next to her standing up against a wall. The handler would not let her touch Miss Devine. I guess that getup is kinda delicate.

On one of our 2005 trips DD10 was unmercifully teased by the living statue near France. She had a BIG floppy bright orange hat on, the statue grabbed it and would not give it back. DD10 tried all sorts of manuevers but she could not reach it. I have about a dozen really funny pictures of that scene.

We had a kick seeing Ariel at her grotto in MK back in 2002. I again have a great shot of both Ariel and DD10 (then 6) holding up and admiring each other's red hair.

Last year we did a Behind the Seeds tour at EPCOT. The only other guests were a English family who had a daughter as well. As we talked throughout the tour we discovered the two girls not only had the same first name, they were actually born on the same day. The wierd thing was, before the tour the little English girl came up to me to trade pins. We ran into them later and the girls rode test track together. I have a great picture of them.

This is a good part of the magic for me about WDW. We seem to do or see something different each time. Also, as the kids get older they are drawn naturally to different things so the experience changes. Great memories, as
you said, Pigeon.
 
GAGWTA!!!

Pigeon~~welcome!!! :grouphug: Hope you join us here often!!
I love your (and snapy's) "little things" memories!!! :thumbsup2

Welcome home Merry!!

Linda~ sounds like you have a good rapport with the doc and are on track! :hug:

Wonder how bubbleprincessmom's mamm went today?

Keeping you all in my thoughts, daily....

:moped:
 
snappy, your DD sounds adorable with her beautiful red hair. I loved reading your version of the "little things" at WDW! :thumbsup2 I especially liked the Ariel and little girl with the same name and birthday stories. :smooth: That's what we really love about Disney, too: the "little things".

A few I can think of right now:

DD8 and I doing "The Twist" with CMs in the Everything Pop food court. :hippie:

8 of us riding a surrey bike around the Boardwalk area and laughing so hard trying to get up the hill on the bridge to Swan/Dolphin, DH and DF eventually getting out to push. :moped:

Riding RnRC 14 times in two EMHs last January because it was the first time our kids could ride and besides ToT, that's all they wanted to go on. :crazy:

Our first trip which was on Sept 21, 2001, just ten days after the WTC bombings and the mood in the nation was still one of shock and fear. We weren't sure about even going, let alone getting on a plane, but we went so as not to disappoint the kids or ourselves, it was their first plane ride and none of us had ever been to WDW before. We had a magical trip, and WDW was practically empty so we stayed an extra day. :wizard:

Our trip in 2002 was to celebrate some big birthdays for all of us (40, 45, 5 and 5), as well as our 15th wedding anniversary. We booked a Contemporary Tower room as a treat to ourselves, and were so looking forward to our trip all year. Two weeks before our trip, Disney called to say they had to move us out of the CR (due to the Shades of Green renovation) but they were moving us over to the Polynesian and upgrading us to a Lagoon View Concierge room! :cloud9: That was a special treat, but believe it or not we were really mad at first, LOL. The funny thing about that was that months earlier, I'd seen a psychic for fun, and she'd told me a lot of things about my deceased father. At the end of the reading, she said I'd be going to Hawaii. I kept saying, no, Florida, and she said, no, Hawaii: "I'm seeing them putting leis around your neck". :scratchin Later I remembered what she said when I realized the name of our building was Hawaii, and started to learn about the theme of the resort. And when our trip finally came and we pulled up to the Hawaii building in a golf cart and CMs greeted us by putting leis around our necks, I cried, because I felt like I was getting a special birthday gift from heaven. :angel: In light of the year I had the following year, it became an even more special gift.

That trip, we celebrated the kids 5th birthday at Cinderella's castle. DD and DS were dressed in a Disney Princess costume and Captain Hook outfit. The Princesses and even Captain Hook himself gave them lots of attention that morning. DS, who is fairly shy, wanted no part of all the attention. In fact when they brought out the cupcakes and sang Happy Birthday, he slinked under the table. I have some great shots of Mary Poppins under the table with him! :rotfl:

Crossing the threshold of Disney Wonder on my post treatment trip was very emotional, I got teary since I'd dreamed about it all year. It was a healing trip for me, the beginning of a new phase of my life. :sunny:

Being picked for Soarin Family was really great, a definite Magical Moment when the music began playing, all the characters ran down the hill, and we were pulled on the other side of the rope. My friend (who worked at Epcot in college) and I were jumping up and down, very excited! :yay: There's a funny story that goes along with it but I can't post it here. If I ever meet you all in person, I'll tell you then. ;)

On our first ever trip to AK, we arrived fairly late in the afternoon, just before 3pm. One CM told us to hurry up and get a spot along the parade route, today would be the very first time they ever had a parade. So we watched the very first Mickey's Jammin Jungle Parade our very first day in AK. :simba:

The first few times DH and I watched Illuminations it always seemed to be in the pouring rain. :confused3 We have great memories of standing there in the rain with the little ones in umbrella strollers, covered with a clear plastic shower curtain to keep the rain off. Once I ran to McDonald's to get some McFlurries for the crying kids, and when I came back they were sound asleep. So we said WTH and ate the McFlurries while we watched the show even though they were sopping wet. :rolleyes1

DH and the kids were on the (very small) elevator on Wonder once, when the door opens up and who walks in but Mickey Mouse!:earseek: They still talk about the time they had the Big Cheese to themselves for a few moments.

Another time, I was sitting on the bench just inside Palo waiting for the rest of my group to meet for dinner. It had been a little hectic getting there on time. I looked up and Goofy was walking by, he saw me and waved to me, I was the only one there. For some reason it just cracked me up and I couldn't stop smiling about it. :teeth:

Yup, some really special vacation moments thanks to Disney. Thanks Pigeon and snappy for helping me remember some of them tonight, it was fun. :love: Would love to hear others' stories if you feel like sharing. Am missing WDW right now...
 
:hippie:~~~***GAGWTA sistas***~~~:hippie:

Pigeon- Loved your little footprints comment... chemo left me with big stinkin' craters!!! :rotfl2:
I need to be cheaper! I kinda flew off the deep end after treatment and didn't deny myself much of anything...I'm trying to reign myself in. But life is short sista!!! :hourglass

I loved reading about everyone's special Disney moments! :love: That's what sets Disney apart! But you really need to be open to the experience, not rushing around like mad. Thankfully we learned that on our first trip. We were in MK right on Main Street and stopped at the popcorn cart then sat down near the flag pole. Suddenly (gosh it seemed so spontanious because we were clueless that it was about to start! :confused3 ) up on the train platform a ton of characters came out and did a little performance. It was so neat, I don't know, it seemed like it was just for us! :thumbsup2

I love the details...my favorite spot is the garden in Japan. It's like a sanctuary to me. Get a Japanese beer and sit by the little waterfall. The kids have their kaki gori then they love to take the camera around and snap pictures.

We're starting to plan when we'll go next year. Shelby wants to be there for her birthday again, so it will be a nice hot July trip! :sunny: We want to try a new hotel, so we picked WL. Now I just have to wait for Disney to release their rates for 2007... :rolleyes1 I've never planned this far in advance!

:grouphug:
 
awwww...these posts are soooooooo wonderful!!!!

My very first trip was in 1993. DD was 6 and my youngest stepson was almost 8. This was about 6 months before DH and I married (we'd been living in sin for about 18 months at that point). DH had been before (with his exand their oldest 3 kids) back when it was just MK and had taken his youngest for a coupleof days (tagalong to a conference in the area) when he was 4...but it was DD and my first time.
We had a lot of special moments on that trip .....but the ones most vivid are entering MK and seeing the castle ahead for the first time (typical I know) ...the look on the kids faces the first sit-down meal at the revolving Land restaurant in Epcot ...when the aiter brought rolls and Mickey-shaped pat of butter. We all stared at the butter...no one wanted to chop off a limb or ear or anything to spread on the bread ! :goodvibes We also had one of those impromtu character-bus run-ins like Laura...ours was at Epcot...it was amazing and we have SO many photos of the kids with SO many characters. But the most vivid and soecial moment I recall was our very first afternoon...we had settled in at Dixie Landings and were going to the food court for a bite and then hop the bus to Epcot. We left the room and started down the path through the grounds to the food court, just taking it all in. We were all happy and excited...DD and DS headed on down the path ahead of DH and I...and just as I smiled at DH and we took each others' hands, the KIDS grabbed each others hands and began skipping and laughing down the path ahead of us.....it was soooo sweet.
 
I am so enjoying reading the magical moments this morning. Great way to start the day, with a great huge lump in my throat. (And I am not talking about my thyroid).

Last night after posting here, I starting talking to DD10 about the time when the living statue would not give her back her hat and reminded her about all the neat pictures I got that day. She told me, yea, Mom, a lot of other people were taking pictures too. I had to laugh. I guess there are some other nuts with pictures of the statue and a little girl with orange hair (it really is VERY red) and an orange hat whose family members have asked when viewing their vacation pics, "who is that girl with the orange hair anyway, and why do you have pictures of her?"

She also got me good the other night when we were looking at our January trip pictures and reminiscing (she, like all of us, is a big kidder :cool1: ). I asked her if she would always be my Disney partner, and go with me on Peter Pan (one of my favs). She said, "Well, it does kinda raise my blood pressure." We both had one of those LOL moments where you can't catch your breath. I guess I complain about stuff (like practice driving with DD15 :crazy: ) raising my BP. I am going to have to cease and desist with that line.

Hoping to hear from Bubbleprincessmom this morning.

Keep those Disney stories coming.
 
Well both before and after my mammo yesterday as I sat there and waited I watched and heard sooo many times...ok everything looks great see you next year, that by the time the nurse called my name and said Monica the radioligist needs to speak to you....I know that I wasn't going to be told see you later. In fact I joked with the nurse on the walk back about it....told her I must have really great insurance to be going back to hear from the dr. personally that everything was ok. Well she told me that the microcals were new changes and looked suspicious to her and that due to their location she recommended a surgical biospy (sorry cant spell) she said IF it is DCIS(?) that is it small and early. Came home late last night and already have a message from my primary care dr. to call them this morning to discuss. It was kindof funny because the tech asked me if i had questions for the nurse and all i could think of was not right now ....and if I do I know a bunch of folks to ask...so was thinking of you all!!!! So what do I need to expect from this surgical biospy...how sore will I be after? Guess the new implants will have to wait a while longer! Thanks btw for all the good wishes it really helps to know that others care.
 
First of all, I love the way you made a joke about your insurance being so good that you are going back to see the doc personally. With that attitude I am sure you will get through this.

I did not have the surgical biopsy. My sister did, you are put under general anesthesia. It is done as day surgery. She was a bit sore, but her area was TREMENDOUS, at least 8 cm, maybe larger. You do want someone to go with you since you are going under. I am sure someone else here who has had this type of biopsy will chime in.

DCIS is ductal carcinoma in situ. It is sometimes called precancer because it is confined within the milk ducts, and therefore has not had a chance to spread to lymphatic system or into the blood system. This is what you want if you have to have breast cancer. However, until you have the pathology report from the biopsy, you can be sure this is what you have.

Mine was mostly DCIS, but there was one very small (.1cm ) of invasive component that showed up in the biopsy. No more invasive cancer was found in the path report from the mastectomy or in the lymph nodes that were removed. That was all good.

A really good site to read up on DCIS is http://www.breastcancer.org/
Please remember though that the odds are on your side that this is not cancer at all. I personally preferred to read up on everything anyway before being diagnosed but this does NOT work for all people. You are kind of in that limbo land where you don't know what you have. So until you have the biopsy and know the result, you have to decide how deeply you want to delve.

We can suggest books, etc. Let us know how you feel about info at this stage.

I continue to hope this was a total false alarm. I do think though that having the biopsy is the only way to go. A lot of women end up having biopsies who don't need them (no cancer) but better be safe than sorry.
The minimal risk associated with surgerical biopsy when one is not needed is far less than the risk of not doing one when a radiologist sees something that MIGHT be a problem.

Please let us know when your biopsy is scheduled. My GYN wanted the surgeon to order the biopsy, I am not sure what the procedure is in your neck of the woods.
 
Thanks for the link, I am the kind who like to read up and be informed. One ? how long does it take to get the path report back? Will I know the results the same day as the biospy or does it take a few days?
 
I think it depends on where you have it done, and if the pathology is in house or not. Where I live it is done off-site. The report from my first biopsy was done in the radiology dept of a woman's hospital by the chief radiologist. The surgeon ordered it, so the report went to him, and he called me at home the day after the biopsy to give me the results. I went in to to see him a couple of days later. Some docs might want to give you the results face to face. I would ask when you have the procedure done from whom and when you can expect the results. You can certainly let your doc know you prefer to get the results by phone if that would expedite things.

For my second biopsy (other breast) a few weeks later, it took almost 6 days.
It was sent to the same pathology lab. When I asked the surgeon what caused the delay, I was told that it takes longer when the biopsy is done in the doctor's office rather than in the hospital. This made no sense to me since both specimens had to be sent out to the same pathology lab. Maybe the pickup at the office location (the doc's office is in the office tower next to the hospital) is not as prompt due to fewer specimen's needing pickup.

The pathology report after the mastectomy also took days, maybe even a week. I think this is probably due to taking more time for more tissue including lymph nodes. They do many cassettes whatever that means, I think it is cross sections. Much more involved than a biopsy of a small area plus there are additional tests they do to determine hormone receptors and other factors to help grade the tumor.

I'll ask my sister how long it took for her to get the results from her surgical biopsy and let you know.

If you are so inclined, there is a huge book by Dr. Susan Love about breast cancer. It is very thorough, lots of diagrams, etc. It can be scary though. I almost would not read this book until you know if you even have a problem.
Most libraries have this book on their shelves, along with others.

Please feel free to ask any questions. We just don't want to scare you any more than you already are.

Do you know why the radiologist recommended a surgical biopsy over the stereotactic needle biopsy (it is less invasive)? I am sure there is a legit reason, but I still would ask that question.

I am just the one who questions everything. Some docs appreciate that, some don't. My surgeon made a face when I told him I had been reading the Susan Love book. She is a little controversial. But the book is good. It is one of the few I actually purchased, mostly I checked out books from the library and my local Cancer Services office which has an outstanding library. They are always adding new books so I continue to frequent that library.
I will say most of my reading was AFTER I was diagnosed. I was on the internet a lot during the time between the diagnostic mammo and actually having the biopsy. I really scared myself that way, but I was determined to understand what it was about my microcalcifications that was suspicious. I would not recommend spending too much time on the internet at the point you are at now.

Feel free to ask questions though. Hopefully we won't scare you too much. But know that there are many. many survivors.
 
Mine was also DCIS. My biopsy was a needle core biopsy instead of a surgical one, so I'm no help there. I agree that DCIS is the breast cancer you'd want to have if you have to have it. I had a choice of removing the affected areas or a mastectomy. I chose the latter because they would have had to take several areas of my breast which wouldn't have left much. Also, I felt better knowing that our chances were better that we'd get it all. They can't see all the milk ducts, so it's not like they can remove them from the breast tissue. I wanted to feel pretty sure it was gone. I also read a lot, but not until after my biopsy. I like the Susan Love book. Actually, in those early days my DH read more than I did and he shared the info. That kept me from being as frightened. I knew the day of my biopsy that it was DCIS, but didn't get the path report back for a couple of days when I met with the surgeon. Keep your sense of humor and stay positive. Hopefully you'll have great news when the path report comes back and we can celebrate with you. If it is cancer, we'll hold your hand and tell you you can beat it.
 
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