Dis Breast Cancer Survivors Part II -GAGWTA!

[Pea-n-Me]

Are you guys doing something fun?

I'm actually feeling crappy today with this head cold and pouring rain. We did go out to dinner last night and we all tried sushi for the first time so that was kind of fun. I think I'm going to have a quiet night at home (tho the kids just got home from school and I'm beginning to re-think that, LOL).

Update: our best friends found out today they are having a miscarriage (yes when it rains it pours) and are going to the doctor's tonight so we will be watching their kids for a while.

What does one say to a survivor on the anniversary of lump discovery? How about: I'm so glad you are here! Good wishes for the future!

That does sound strange, doesn't it? I guess I consider that day to be "the day it all started", or "the day my life changed forever". But "5 years" feels good to me whatever it is, so I'll take it. Thank you.

I'm glad your mother's holding her own. Uggh, the rainouts. We had a ton of those this summer for baseball, too.

Have any of you heard about the Halo (HALO?) test? They extract fluid from the breasts with a thing like a breast pump and look for cancer cells in the fluid. Supposedly it detects abnormal cells EIGHT YEARS sooner than a mammogram. It also supposedly only costs $75. Not sure how it is different than ductal levage, or if one is better than the other. I am going to look into it. I am going to a new GYN in a few weeks so we'll see what she has to say. Of course I may go have the test regardless of what she has to say.

You know, I haven't. But something happened with my SIL's MIL where she apparently was diagnosed with BC but according to SIL, they treated it by "sucking it out". (My gut says that this is somehow related to what you describe.) Anyway, obviously I was extremely concerned about this as the only "surgery" but she had radiation as well and I was assured by all it was fine so I had to butt out and

. Well this poor, adorable woman developed a brain tumor a year or so later and went downhill with dementia and passed away last winter (oh yes, forgot, this will be the 5th funeral this year for DH and kids, they went to that without me as I was working). I still don't know WTH happened. So I guess as a diagnostic tool this would be something interesting to look into, though I don't think it's at all mainstream yet. OTOH, as a treatment option (ie lavage, probably), I definitely wouldn't recommend anyone going that route.

 

[jackskellingtonsgirl]

Linda - How sad for your friends! It is very nice of you to watch the kids for them, seeing how you aren't feeling well AND it is your anniversary. But it's not like they re doing anything fun, either.

Did you like the sushi? I have no clue what made DS decide he likes sushi (he likes Japanese monster movies, but that's about it). Now we all kind of like it!

It wasn't raining at the football game, that's just how it went! The weather was gorgeous, but not many folks are interested in football on Tuesday, I guess. When I was in Jr. High in FL our football team (and our band) were a HUGE deal. DH says at his middle school here it wasn't.

I phoned the clinic where they have that Halo thing. She said they attempt to extract fluid from the breast, and anything that they do extract is sent to a lab for analysis. Hmm. She said it is non-invasive (and what I saw last night on the news looks exactly like a breast pump). Definitely NOT interested in it as a treatment option, just as an EXTRA diagnostic tool in addition to mammo and whatever else is recommended. She said I could schedule to come in next week but I am going to wait until after my GYN exam and decide then.

 

[jackskellingtonsgirl]

Ah! Look what I found!
http://www.neomatrix.com/halonaf/NAF-Collection.aspx
I love Google!

 

[Pea-n-Me]

Definitely NOT interested in it as a treatment option

LOL, I know you're not. I just thought I'd throw that in since it's the first time I'd seen anything written anywhere about something remotely similar and I've apparently been dying to get it out! (I must be having a worse day than I thought. )

Let us know what you decide.

 

[lookingforward]

Linda, I am so sorry about your cousin and your friend's miscarriage! WHat a sad week for you.

I LOVE sushi. We eat it all the time. I lived in Japan for three years and fell in love with all things Japanese! My favorite is tuna and eel. YUM!

Well, I made an appointment with John Hopkins for a second opinion on my prophylactic surgery. I will fly there Oct. 12. They offer the subcutaneous/nipple sparing which NO surgeon around my home will do. I want to explore all my options..and my insurance will pay for either so..... Unless they can guarantee me good results I will go with the local surgery because it would be much sooner and much cheaper. (no flights, hotel, etc) and I really liked the new surgeon.

More later,
Hope you are all doing well.

 

[jackskellingtonsgirl]

LOL, I know you're not. I just thought I'd throw that in since it's the first time I'd seen anything written anywhere about something remotely similar and I've apparently been dying to get it out! (I must be having a worse day than I thought. )

Let us know what you decide.

I get how we all have to make our own choices about treatment and so forth, but some options really just don't deserve to be called "options".

I am not driving out there next week, but I am definitely considering it. (The clinic is north of here, way past my normal stomping grounds. Not THAT far, but I would have be be sure it is worth it before I made the trek up there.)

This HALO thing is FDA approved, but for some reason something about it is just a little "off" for me. That's why I am not rushing to book an appointment for right this minute. My friend works for the FDA so maybe I will see what he knows about it.

Linda, I am so sorry about your cousin and your friend's miscarriage! WHat a sad week for you.

I LOVE sushi. We eat it all the time. I lived in Japan for three years and fell in love with all things Japanese! My favorite is tuna and eel. YUM!

Well, I made an appointment with John Hopkins for a second opinion on my prophylactic surgery. I will fly there Oct. 12. They offer the subcutaneous/nipple sparing which NO surgeon around my home will do. I want to explore all my options..and my insurance will pay for either so..... Unless they can guarantee me good results I will go with the local surgery because it would be much sooner and much cheaper. (no flights, hotel, etc) and I really liked the new surgeon.

More later,
Hope you are all doing well.

Maureen, good luck with your consult! And how awesome that insurance will cover either procedure!

 

[Sha]

Prayers for your friends at this time Linda... how sad!

Maureen that sounds like tough decision about which one to go to. Am sure you will make the right one for yourself. Lots of prayers as you get more information and decide.

 

[snappy]

Maureen, I like that you are covering all the bases of checking out the options. I noticed lots of ladies traveling for both cancer surgery as well as prophalatic surgery on the facingourrisk.org site. I am sure it gets pricey, but to get the surgery you really want, it might be worth it.

It doesn't hurt to find out, even if you do end up with local docs.

Linda, how very sad for your good friends. I hope the kids have fun together and that you are able to rest and recover from your cold.

Sha, we don't have a real schedule for out trip. We are definitely going to EPCOT the night of our arrival, Tuesday, and we have a ticketed event scheduled on Thursday in the afternoon. Other than that we are winging everything. I am loving not worrying about a schedule for a change. I usually have a plan by this time, you know I have not even checked the extra magic hours schedule. We don't do meal ADRS either. I suspect we will eat alot in EPCOT at whatever looks good of the Food and Wine Festival offerings.

Let me get back with you on that. We are staying at Boardwalk.

 

[Sha]

Sha, we don't have a real schedule for out trip. We are definitely going to EPCOT the night of our arrival, Tuesday, and we have a ticketed event scheduled on Thursday in the afternoon. Other than that we are winging everything. I am loving not worrying about a schedule for a change. I usually have a plan by this time, you know I have not even checked the extra magic hors schedule. We don't do meal ADRS either. I suspect we will eat alot in EPCOT at whatever looks good of the Food and Wine Festival offerings.

Let me get back with you on hat. We are staying at Boardwalk.

I do know Thursday and Friday night has MNSSHP, EMH Friday at Epcot, and MK closes at 9pm on Saturday. We have to be up early on Friday morning for the Back Stage Magic tour. So not sure if we will be out and about on Thursday evening. I dont recall if I have plans for us for this trip or not LMAO I have to find my paper that I wrote things on or call Disney

 

[snappy]

I do know Thursday and Friday night has MNSSHP, EMH Friday at Epcot, and MK closes at 9pm on Saturday. We have to be up early on Friday morning for the Back Stage Magic tour. So not sure if we will be out and about on Thursday evening. I dont recall if I have plans for us for this trip or not LMAO I have to find my paper that I wrote things on or call Disney

Remind me again what MNSSHP is. . . I am having a senior moment.

 

[Sha]

Remind me again what MNSSHP is. . . I am having a senior moment.

LOL Mickeys Not So Scary Halloween Party

 

[snappy]

LOL Mickeys Not So Scary Halloween Party

OMG I thought I typed senior movement.

I am really having trouble in the typing department lately. Must be this darn keyboard.

 

[snappy]

I do know Thursday and Friday night has MNSSHP, EMH Friday at Epcot, and MK closes at 9pm on Saturday. We have to be up early on Friday morning for the Back Stage Magic tour. So not sure if we will be out and about on Thursday evening. I dont recall if I have plans for us for this trip or not LMAO I have to find my paper that I wrote things on or call Disney

OK time to plan. . . What about Friday pm in EPCOT then?

Saturday I am thinking Studios am for EMH. I don't want to be out late Sat night, you have to be in the parking lot by 7:30 am.

Hey lately I have found I can be somewhere by 5:30 am, or my usual work starting time of 9:30. Not sure if my body knows how to do 7:30.

May also do studios pm Sunday, after the race, or perhaps Magic Kingdom or just Epcot again.

When do you leave outta OKW?

Ann, what do you think you and your sisters wanna do? Are you staying in the Epcot area too? It is so darn easy to walk over to EPCOT from the BW.

 

[Sha]

OMG I thought I typed senior movement.

I am really having trouble in the typing department lately. Must be this darn keyboard.

LMAO

OK time to plan. . . What about Friday pm in EPCOT then?

Saturday I am thinking Studios am for EMH. I don't want to be out late Sat night, you have to be in the parking lot by 7:30 am.

Hey lately I have found I can be somewhere by 5:30 am, or my usual work starting time of 9:30. Not sure if my body knows how to do 7:30.

May also do studios pm Sunday, after the race, or perhaps Magic Kingdom or just Epcot again.

When do you leave outta OKW?

Ann, what do you think you and your sisters wanna do? Are you staying in the Epcot area too? It is so darn easy to walk over to EPCOT from the BW.

That is true about the early time on Sunday morning. We will play Sunday by ear. I do not think we were able to have tea that day. So game for anything most likely. Though I am partial to MK, we will probably go to Epcot.

As far as Friday evening, that sounds fine. If mom is tired I can do 2 things, 1 get a wheelchair or 2 take her back to room and come back. I think she will want to stay though and be with others who have been where she has been.

 

[MerryPoppins]

Hi, I'm a fellow Sooner too. Are you doing Race for the Cure on Oct 4th? I'll be there wearing my Tink Pink shirt. We're doing the fun walk.

I had a mastectomy too and my onc has never mentioned a MRI. I still have to go for yearly mammograms even tho I've had both breasts removed and reconstructed. I never thought I'd have to keep getting them after the surgery.

NaeNae, are you in Norman? It's cool to have a local breast cancer friend on here. No I'm not doing RFTC on the 4th. I had a conflict. Maybe next time we can meet up? That'd be fun.

I still get a mammogram on my mastectomy side and I didn't have reconstruction. Man, that baby pinches when you don't have a breast. I've never had an MRI. I wonder if it's because I had DCIS?

I'm getting jealous with all this talk of Disney trips. I'm not sure I like y'all very much right now. Just kidding. Have fun.

 

[CherylDan]

I still get a mammogram on my mastectomy side and I didn't have reconstruction. Man, that baby pinches when you don't have a breast. I've never had an MRI. I wonder if it's because I had DCIS?

.

ouch! I can't imagine that would be possible for me....there is just nothing there. But I've never had a MRI either. Now that I think about it, I've never had anything on my mastectomy side. Hmmmm. I'm thinking I better find out if something got overlooked. I have an appt. next month, I'll find out then.

I hope all you Disney trip peeps have a great time!!

Linda, congrats on your 5 years! Personally I can't wait for somebody to tell me that. (I am quickly approaching two years, but five sounds soooooo much better!)

Maureen, I hope your appt. goes well. That's great that your insurance is not limiting your choices, and you be able to decide what is best for you without those restrictions!

I know I am forgetting a bunch of stuff.

Have a good weekend everybody! GAGWTA!!!!!

 

[Aliceacc]

Hi guys, I'm back with more questions

I went to the doctor Thursday. He took out the drain and the stitches... gave me permission to shower (THANK GOD!!), drive, and sleep without a bra. My expander receives its first "fill up" this week.

I'm starting to look towards getting back to school in 2 weeks. I teach high school math, and spend much of my time writing on the board.

I normally dress pretty conservatively anyway-- lots of suits. (I teach in a Catholic high school, and that style suits me anyway.)

As of yesterday, I was able to get into my husband's XL sweatshirt. I'm really working on exercising my right arm-- hopefully I'll be able to get into a t shirt of my own soon.

I guess my question is this: what do I wear under those suits? And in what size? I'm normally a size 12--that translates to a Large. Do I buy ladies XL t shirts? Or will that just point out my lopsidedness while I undergo reconstruction? (Remember, I teach adolescant boys.) Do I buy XL button down shirts (even though I HATE to iron??)

I also have to hit the bra store and buy something-- I'm assuming they'll be able to guide me there.

Any ideas, suggestions, warnings....?

 

[jackskellingtonsgirl]

NaeNae, are you in Norman? It's cool to have a local breast cancer friend on here. No I'm not doing RFTC on the 4th. I had a conflict. Maybe next time we can meet up? That'd be fun.

I still get a mammogram on my mastectomy side and I didn't have reconstruction. Man, that baby pinches when you don't have a breast. I've never had an MRI. I wonder if it's because I had DCIS?

I'm getting jealous with all this talk of Disney trips. I'm not sure I like y'all very much right now. Just kidding. Have fun.

You girls are welcome to drive down for our RFTC on 10/18! DS and I will be going for the first time.

 

[snappy]

Hi guys, I'm back with more questions

I guess my question is this: what do I wear under those suits? And in what size? I'm normally a size 12--that translates to a Large. Do I buy ladies XL t shirts? Or will that just point out my lopsidedness while I undergo reconstruction? (Remember, I teach adolescant boys.) Do I buy XL button down shirts (even though I HATE to iron??)

I also have to hit the bra store and buy something-- I'm assuming they'll be able to guide me there.

Any ideas, suggestions, warnings....?

First, congrats for losing the drains. How freeing is that????

OK, let me answer here, as I was lopsided for more than two years until I had my tram flap in 2006.

Now given, I was not working at the time, so no suits, etc.

However, I was concave on the mastectomy side and 36DD on the other. What I did in the early weeks was wear a loose, stretchy bra that snapped in front. I bought some very fashionable cheap, no-underwire models from Walmart. They had sort of a shapeless effect but were tight enough that both sides were shapeless. Before I was ready for a real prothesis I used all the shoulder pads I could harvest from all my old work clothes as temporary soft makeshift protheses. It took several to have the effect I wanted. They did tend to pop out so that is where the tightness of the bra helps.

I would think button down the front shirts would be your best bet for ease of getting them on. I have found that many of my button downs do not have to be ironed if I use a good fabric softener in the risk and let the dry for no more than 10 minutes so that the weight of the wet fabric pulls our the wrinkles.

Main thing is. . . don't wear white ever, or anything tight. I think with a jacket on you will be fine. I also used woven cotton camisoles some, can't tolerate silk or nylon thought.

Just remember that you are noticing things more than anyone else was. It is natural to feel self-conscious. That feeling was a big part of what pushed me to doing delayed reconstruction.

When you are ready, seek out a specialty shop that has mastectomy bras, forms and clothing. They can fit you into a better bra, and even give you a variety of light weight forms that will give a better shape than my shoulder pads. You may need different sizes as the fills proceed. Some or all of this should be covered by insurance but they are pricey.

You can't wear anything heavy like a real prothesis for awhile, the weight will pull too much on the incision. You should not need a real prothesis anyway. I did not use them but I think they have "forms" that help even out the fit of your bra. Even women who had lumpectomies sometimes benefit from versions of these.

I can't stress enough that you will notice the unevenness more than anyone else.

I'll tell you that I went to the soccer field one day in the fall and forgot my prothesis. I had a sweatshirt on, and no one was the wiser. So loose is the key. Don't go for the tailored look. Hopefully your jackets are roomy.

I will tell you one other thing, I hated the big momma prothesis I was sold at the mastectomy store. I adopted my sister's MIL's prothesis that she never wore. It was much smaller (like half the size) but was so much lighter. I could tolerate it much better. I know I was extremely uneven (the fitter at the mastectomy store would have been demoralized as she was a stickler for matching things up) but no one ever gave it a thought. My clothes fit much better with one side smaller (there was no strain on the buttons anymore). Again, I avoided wearing white or anything tight or see through of course.

There are little silicone petals you can buy that can hide the effect of having only one nipple if this becomes a probem in certain materials. I found them at Dillards but they were also in the lingerie department in Walmart, hanging on a card thingie, for half the Dillars price.

Gotta love Walmart. I think these are actually designed for under formal strapless numbers when you can't wear a bra, but they fit they bill. The fitter at Dillards directed me to those so others must use them too.

Good luck. If I can help in any way, ask away or PM me. I'll do my best to help.

 

[Pea-n-Me]

I'm getting jealous with all this talk of Disney trips.

I'm with you, Merry! I am having such withdrawal, especially watching those old videos this week of our Poly stay. DH and I were chuckling at what newbies we were. But oh, what I wouldn't give for a trip like that again! Our room opened up to the beach overlooking the castle. (DS actually said, seriously, "Mom, I can book us in there again right now!" It was a free upgrade for us when they moved us out of the Contemporary.)

One section of the video was really a classic of what our lives was like with young (4yo), active twins. They'd brought in two big bunches of balloons for the kids' bday along with some other stuff, signed pictures of Mickey, Cinderella, and some certificates. I sat them on the bed and propped up all this stuff around them while they held the balloons so I could get a picture. DH had the video camera rolling and I guess I didn't realize it. Of course, they were excited and jerking the balloons around, giggling, moving, etc, while all the stuff was falling down around them. I went back and forth around the front of the bed several times and tried to snap a picture when DS moved again while they laughed and some choice words slipped out of my mouth finally (not too bad). Then you hear DH chuckling on the video and I started laughing, saying "shut that thing off". He says, "why, so I can be the only one yelling at them on the tape all the time?" which in fact would be true so we all started cracking up laughing for the longest time and just barely got the picture. (I wish my scanner was working so I could post it, LOL I was still using film then.) It reminded me I really need to do video more often.

My kids' teacher this year is a huge Disney fan, which is neat. We sort of know her "outside of school" because she's a friend of a friend. We brought her some Mickey chocolates on our trip last year, etc. So the other night at Open House she was enthusiastically telling us about her WDW trip this summer and I notice there's quite a line beginning to form behind her. I had to say, "well I could stand here all night and talk about Disney but I better let someone else have a turn with you!" Nice to have someone who "gets it".

Aliceacc, it's a good question. I'm sorry I can't help as I did not have a mast, but I'm sure those that did will have some good advice for you (ETA I see snappy covered it!) I take it you had surgery on your dominant side? My only advice would be to be careful about lymphedema. If you aren't familiar with it, you should do a little reading on it. I had 8 nodes removed (and could have used a drain myself) and developed my first case of lymphedema several months after treatment ended after I flew to WDW (I think lots of salty food made it worse also - darn Dining Plan!) I had to go to PT for several weeks at the time, and I now wear a sleeve when I fly. My arm is always just a little swollen, but it's barely noticable to anyone but me. I think the radiation to the area makes this worse, so if you didn't have that, it might not be as big an issue.

Cheryl, thank you!

jsg, meeting all of you guys from around the country makes me want to go to some of these places! Maybe someday!