Dis Breast Cancer Survivors - GAGWTA!

[Christine]

Hi everyone! What a HUGE thread. I've been directed over here by Pea-N-Me and laurabelle. As far as I know, I don't have breast cancer (keeping fingers crossed) but I am having a VERY BAD DAY.

I'll keep it short as I went into a lengthy store on my other thread but:

Last year I had surgery to remove a 1 cm cyst in my breast. No one could palpate it; however, it was clearly visible on mammogram and sonogram. Most likely fibroadenoma. Had a rough surgery to get it out. Surgeon took about 4 cm of tissue. Was indeed a fibroadenoma. After my first two post-surgery follow-ups, everything seemed fine and he told me to have a mammogram in a year and come back and see him. Well, it's been a year. My mammo was scheduled for this afternoon. Since I was off, I schedule a few other appointments. I went to my GYN this morning for a routine check up. He feels the area and says that it doesn't feel like scar tissue but is more "cystic". He said it is "round" and "like a marble" whearas scar tissue just feels like a thickening. He tells me to make sure that I have a comprehensive mammo with an ultrasound today and NOT just a mammo. I arrange all that.

So, I have this all done today and the radiologist comes to see me at the end of the sonogram. She looks at it and is very displeased. She cannot tell what the lump is where my surgery was. Part of it is cystic as it is black on the mammogram and seems to go around the cyst as a border 3/4ths of way, but then the black disappears. The other stuff within is gray colored and is "stuff that she doesn't know what it is." On top of that, they decided to sonogram my left breast where I had too fibroadenomas removed when I was 14 and 23 (I am now 41). There is a solid dark black mass there about .5 cm. It looks like all the other fibroadenomas have looked and is in the same spot where the two were removed YEARS ago.

As you can imagine, I am sick with worry over what this "material" is that his filled in the 4 cm whole that the surgeon created. The radiologist seemed adamant that it was not scar tissue.

My logical self (about 1/10000th of my personality) says "Christine, this is a result of your surgery--whatever it is. The original lump was not cancer, why would cancer decide to get started in the same exact spot." My other side (which is the massive paranoia side of me)knows that weirder things have happened. I've already beaten the odds once by getting thyroid cancer. You know, only 10% of thyroid lumps are cancerous. Well, mine was!

Funny thing is, I'm not especially worried about the lump on the left side.

Bottom line though--I'll be going under the knife again. And I'm not happy about it.

The last surgery (biopsy) I had was very hard on me for some reason (the first two were not). Maybe because it was so deep. My breast was so purple (for weeks) and I had a fever for 2-3 days after the surgery. And I was exhausted. So, I just know that I'll be down for a week with this. And I'll probably have both sides done.

Sorry to ramble. I also feel bad about jumping on your cancer survivors board with my worries. I don't even have a cancer diagnosis and I hope not to have one. But I do hope that maybe some of you can tell me about your post-surgery experiences, the scar tissue, and that type of stuff. It would be greatly appreciated.

Thanks!

 

[Hollyann]

Christine - I hope it goes better for you. I can imagine your worries. I was lucky with my biopsy - it was also a fibroadenoma - but the GAGWTA ladies are SO wonderful....I just can't stay away.

Believe me, you were pointed in the right direction for love, care, support and prayers.

I'll be praying that everything turns out all right.....

 

[laurabelle]

Christine- You don't have to have bc to post here... we have lots of supporters, family & friends, people who are having scares just like you... That's why I invited you here!
Like I said in your other post, my scar lump felt just like my tumor, my onc, surgeon, the nurses, nobody could tell the difference when they felt it and the mamm. and ultrasound couldn't tell and it ended up being scar tissue. Like you said, you didn't have cancer in that spot and it is right in the scar, so it's very favorable IMHO. But, I know weird things happen too... You sound like inspite of your fears you are doing a great job of staying on top of this. I'll be praying for you...

 

[laurabelle]

Hi Ladies!

It's been crazy busy at work - I'm catching up on being absent - finally! I hope you have a great day! Went out with some old neighbors last night. We try to go the 1st Monday of the month. We just went to a salad bar - but ended up talking most of the night. Always nice to spend quality time.

I have a friend who saw her surgeon today regarding breast issues - I hope everything went well....haven't heard yet.

Laurabelle - Ooh, the Milton Inn sounds GREAT - have fun and Happy Anniversary!

Merry - I hope your allergies are better. I have food allergies, so I carry allegra and benedryl with me all the time.

Donnabres - did your call come in? We're thinking of you - this is a GREAT group of ladies....and a wealth of information!

Well, I'm gonna post on a few other threads and catch up! See you around!

I love getting together like that...it sounds like a wonderful night! I hope your friend is okay.

 

[NHAnn]

Laurabelle...that place looks wonderful...and your link too Linda! I just love the atmosphere in romantic and historic inns like that... here is one that we've been occasionally for special dinners Colby Hill Inn . Snappy~DH and I went to NO (he had a conference there) for a few days back in 1994. I enjoyed the Aquarium...we did not visit the Zoo though. My most vivid memory from 4 days of eating and drinking is our dinner at The Court of Two Sisters...everything was just so perfect that night...it was romantic, the food and ambiance were just magical...and the Bananas Foster...aaahhh....I wonder how they fared thorugh Katrina? I will have to google later.

Christine~I too wish you uncomplicated surgery, speedy recovery and most important....benign results! Yikes - it does sound like your last surgery was rough recovery...tiredness can linger I think. I hope things go smoother for you this time...when is your surgery? I will keep you in my thoughts, expecially on that day!! The waiting IMHO is worse than the actual experience but that's just me. My experience with excisional biopsies (day surgeries) is as follows: 10 years ago...had a lump removed, it was I think 2 cm at it's biggest dimension, it ended up being benign. Have a scar about 1 1/2 inches at about 12 oclock that is pretty much faded away. The surgeon said I would have to be very careful over time to be familiar with the area when doing BSE, as the scar tissue could make it difficult to detect an early cancer. Fast forward 10 years and last April the radiologist saw a suspicious cluster of microcalcifications in an area of about 2 cm on the same side but down near 6 oclock. Excisional biopsy and Dx of DCIS. Re-excision of the area about 3 weeks later, close to 5 cm of tissue at the longest dimension to get clear margins. As far as my recoveries from the day surgeries.... ice, ice,ice!!! OK, the painkillers help too but keeping an ice pack constantly right over the sports bra for about 48 hours helped me tremendously, especially after that second surgery three weeks after the first one. The first I had on a Wednesday, took Thursday off and was back to work on Friday just taking OTC (I think ibuprofen). The second more extensive surgery was on a Friday and despite the cumulative effect and the emotional impact of the Dx, I was still back to work on Monday. At that point I think I just wanted life to be "normal" ...I hadn't come to accept the "new normal" yet But with the ice and "good drugs" at home and OTC painkillers once back to work, I wasn't "out of it" physically due to pain more than a few days...though tiredness surely lingers long after surgery in many cases, and everyone is different too! In my case I think I was emotionally as well as physically exhausted after the 2 surgeries and had a short-term presc for Ambien to help me get back into an adequate sleep pattern prior to beginning my radiation...then after a few weeks of radiation I was so tired I didn't need the Ambien much at all Anyhow...jury's still out on scar tissue this time, though it was a larger area so I'd think there'll be more of it...on the other hand the incision and cosmetic results are much "neater" and smoother than the one 10 years ago...so who knows...
If you've gotten this far, it's probably way TMI! so I'll stop now...just remember...ice is your friend!!!!!

GAGWTA!!!

 

[Christine]

NHAnn--I did the ice last time but it didn't seem to help (or maybe it did). I had a 1 cm non-palpable cyst. I think what did me in was the ultrasound right before the surgery where they were trying to locate it. The sonographer found the lump and then they had to insert a wire with dye into the the breast and into the lump so that my surgeon could find the darned thing. I just remember them struggling when they were trying to put the wire in and there was a lot of blood. They must have hit a capillary or something. The sonographer was putting what seemed to be his full weight on my chest while this wire was inside. Very painful. I think having that weight on me with the sharp wire probably caused a lot of internal bleeding.

I was also very surprised to read my surgery report. For a 1 cm lump, they took out 4 cm of tissue. On my previous surgeries for the fibroadenomas they just sort of "popped" the little bugger out and nothing around it (that was YEARS ago). They were also very close to the surface and not deep like this latest one.

So, I think I was just wiped out because I had a fever for a few days and the stress of it all was too much. I really didn't have any pain, thank God, well, it was manageable anyway.

 

[NHAnn]

and then they had to insert a wire with dye into the the breast and into the lump so that my surgeon could find the darned thing. I just remember them struggling when they were trying to put the wire in and there was a lot of blood. They must have hit a capillary or something. The sonographer was putting what seemed to be his full weight on my chest while this wire was inside. Very painful. I think having that weight on me with the sharp wire probably caused a lot of internal bleeding.

................stress of it all was too much. I really didn't have any pain, thank God, well, it was manageable anyway.

OWIE OWIE OWIE! on the sonogram/wire locator proecedure!!
And yes it is all cwertainly very stressful. I hope this time is better for you

 

[MerryPoppins]

Christine, keep us informed. I've added you to my prayers. Come here to vent if you need to. Waiting is hard. We've been there.

Life was busy again today. I sure hope things slow down soon. DD's high school musical is over the 19th, so that'll help. Right now it's rehearsal, rehearsal, rehearsal and I'm chairman of a booth at our church bazaar in early December. Eek.

Finally remembered to make my mammogram appointment. I've been a bad girl. I'm a month late. Got the card and kept forgetting until they closed. Wish they'd let you make an appointment a year out, and just change it if they scheduled wrong. I'm not good when I get the cards. Our mail comes late and then it's forgotten.

GAGWTA!

 

[MinnieM3]

Snappy..... I know this is such a hard decision! That PS is right that no one surgery is best for every woman. I can speak about the DIEP that I had this summer. It is REALLY nice...no muscle damage for me. I go in Dec. to have stage 2 done. Recovery was less than the 6 weeks they had said! Sounds like you're doing everything right. Talking to past patients is a great idea, too!

 

[Pea-n-Me]

I also feel bad about jumping on your cancer survivors board with my worries

Actually, Christine, you could be one of us already with your history of thyroid cancer, so don't worry about bothering us, we are happy to help if we can. (Mainly people with breast ca here but others have come by and/or post regularly too for other types of cancer).

I've had my share of scares and lumps as well. Prior to my diagnosis I had a biopsy of an oval mass which turned out to be a benign fibroadenoma (at 11 o'clock). Then I found my lump which was the real deal (at 7 o'clock). Since my lumpectomy I have had a hematoma/scar inside that has never gone away. It is still uncomfortable and you can feel the scar tissue deep down. I do not like having it there but what can you do. I also had a scare post treatment on my other breast which was biopsied and about to be taken out when it "disappeared off the radar screen" thankfully. My surgeon told me it "looked like a new cancer" so for about 6 weeks I was utterly devastated. It was probably a premenstrual change but we didn't know then. I was prepared to have bilateral mastectomies but instead we are watching things pretty closely now. Yup, lots of fun.

I also had endless tests this spring and summer for right upper quadrant pain all of which were negative thankfully. But I sweated each and every one. Having been through a lot yourself already you must just want to crawl under a rock and say "come on guys, enough is enough"! That's probably something we can all relate to. And being the type of person you are makes it harder - I'm the same way.

Well there's not a lot we can say other than to share our own stories to let you know we've been there too and can empathize with how you're feeling right now. It stinks. Hopefully it's somehow helpful to be here with us. Keep us updated on how things are going and how you're feeling. You will be in my prayers.

 

[kelljacques@aol.com]

Can't wait until I can have one of the pink ribbons under my name. I have just been diagnosed, 1 1/2 weeks ago. Have spent the last week visiting the surgeon and oncologist, and numerous tests. I will be participating in a trial test of chemo before my mastectomy. I am so overwhelmed. My niece sent me this thread to read.

I couldn't believe that after years of checking the Dis Boards before my 2 Disney cruises, and numerous trips to WDW, I would be checking it out because I have Breast Cancer.

I have only read a few pages starting from the begging, but will eventually read every single one of them. Right now I do feel like I need some support, and somehow my family and friends who have been WONDERFUL, and supportive, but they still don't know how I feel.

Thankyou for listening to me, and giving me a place to vent.

hi auntie,

I know we don't always undertand how you are feeling but know that we love you and are thinking of you!! call if you need anything!!

 

[Pea-n-Me]

WOW Pea!!!! That is awsome news.

Thank you, Quack!

 

[snappy]

Snappy..... I know this is such a hard decision! That PS is right that no one surgery is best for every woman. I can speak about the DIEP that I had this summer. It is REALLY nice...no muscle damage for me. I go in Dec. to have stage 2 done. Recovery was less than the 6 weeks they had said! Sounds like you're doing everything right. Talking to past patients is a great idea, too!

Thanks as always for your input MinnieM3. I am so glad you did so well with your surgery. Will you be able to recover during Christmas holidays from stage 2 of the procedure? I have asked to be matched with another patient who has had a delayed latissimus flap. I do think that will help me decide. I also have a call in to my GYN doc, she recommended reconstruction, but steered me away from flap surgery. I need to know if her reservation with the surgery was due to my pelvic issues. I am also not sure how familiar she is with the DIEP and what the ramifications might be for someone with relaxed pelvic muscles like me.

Christine, I remember getting great support from you on a thyroid issue thread. Glad to see you, sorry you are going through the agony of these tests that are not conclusive and more surgery. Being in limbo sucks. We will be here for you throughout it.

Just got home from a neat quilt auction for the YWCA Encore program that raises money for mammograms and GYN testing for underserved women.
The company DH works for is one of the sponsors, so I got invited. I bid on several quilts, ended up with a beautiful but modest one. My mom went with me and got her favorite, a hummingbird design. It is stunning!!!

There were also a bunch of art bras auctioned off. The auctioneer really had fun with these. The bras were all so creative. The one I bid on is "we are Siamese if you please", two really cute quilted siamese cats with a lot of attitude. My sister worked in Japan for a while at a rice farm, and also lived in an eastern style monastery in Oklahoma. She will love the Oriental feel of this. Kind of a untraditional Christmas present, but what the hell. The "hot" bras were the flamingo numbers, one actually fetched $2,000.
Someone promised the ultimate high bidder that she would wear it to court (she's an attorney). Flamingoes are big in Baton Rouge, they are kind of the mascots for the Spanish Town parade (Mardi Gras parade). This art bra had two very large flamboyant flamingoes. It would be very appropriate garb for that parade, as anything goes with the Spanish Town parade.

 

[laurabelle]

~~~***GAGWTA sistas***~~~
kelljacques-

Laurie- Remember I mentioned my friend who sees my PS (well he was her PS 1st! lol) who had a DIEP flap? I remembered (sorry chemobrain) she did have full hyst w/ ooph. and hasn't had any trouble with her stomach/pelvic muscles. If you'd like, I'm sure she'd be happy to talk to you about it.

It is important to have a surgeon who does specialize in DIEP. I know I've heard (though not paid very close attention) that there are surgeons in NOLA who do it. I believe my friend with the genetic bc website might have info about this recon. and the docs on her site if you want to look www.facingourrisk.org .

I have a few other friends with lat. flaps. The main complaint I've heard from them is the scar, it's harder to hide. One friend is having her's tattooed, she also had a tram on one side- two masts at different times- and had that tattooed with gorgeous flowers! She's the one who designed my tattoo. I love her! HTH

Ann- That inn looks wonderful too! I found something to wear, bought some gaucho pants to pair with a cashmere sweater and boots...It's supposed to be chilly here Friday which is great because they'll have the fireplaces going!

One month 'til my surprise Disney trip sistas!!!

 

[Pea-n-Me]

GAGWTA!

snappy, wish I could help more but don't know anything about those procedueres. Sounds like you've got it under control, though. I love quilts. We go to fairs in the summer and I always take chances on them - no luck yet. Probably just as well since our dogs are welcome on the bed.

Laura, gaucho pants!! I haven't heard that term in a long while. Have a great dinner. Hope your stomach holds out. How's ther surprise coming? Girls have any inkling?

kelljacques, so you're Donna's neice, LOL? Thanks for directing her here. Do I see in your siggie that you're expecting? Congratulations.

Christine, hope you have a better day today. I agree with someone on the other thread who suggested you try to go to your "happy place" today as much as you can. Maybe today would be a good day to start planning your next Disney trip (like we do, LOL)?

 

[kelljacques@aol.com]

GAGWTA!




kelljacques, so you're Donna's neice, LOL? Thanks for directing her here. Do I see in your siggie that you're expecting? Congratulations.

nope going to disney on december 8th!

 

[snappy]

~~~***GAGWTA sistas***~~~
kelljacques-

Laurie- Remember I mentioned my friend who sees my PS (well he was her PS 1st! lol) who had a DIEP flap? I remembered (sorry chemobrain) she did have full hyst w/ ooph. and hasn't had any trouble with her stomach/pelvic muscles. If you'd like, I'm sure she'd be happy to talk to you about it.

It is important to have a surgeon who does specialize in DIEP. I know I've heard (though not paid very close attention) that there are surgeons in NOLA who do it. I believe my friend with the genetic bc website might have info about this recon. and the docs on her site if you want to look www.facingourrisk.org .

I have a few other friends with lat. flaps. The main complaint I've heard from them is the scar, it's harder to hide. One friend is having her's tattooed, she also had a tram on one side- two masts at different times- and had that tattooed with gorgeous flowers! She's the one who designed my tattoo. I love her! HTH

Ann- That inn looks wonderful too! I found something to wear, bought some gaucho pants to pair with a cashmere sweater and boots...It's supposed to be chilly here Friday which is great because they'll have the fireplaces going!

One month 'til my surprise Disney trip sistas!!!

Thanks Laura, I would love to talk to your friend. PM and I'll give you my email address if that would be the best route.

The back scar does not bother me too much. The tattoo sounds interesting though. Sounds a lot more fun than the nipple tattoo stuff. I really like flowers and would love a fish or two. (Fish are my thing). Remind me (no chemo brain here, more like simple aging brain), isn't your tattoo Disney related?

I checked with Silimed, one of the companies that makes the cohesive gel implants, there are no PS's using them in Louisiana. Why am I not surprised?
The PS I saw Friday is very familiar with the New Orleans docs who do DIEP's,
both of them were residents under him at LSU. The doc I saw also trained under Dr. Allen, the originator of DIEP. I am considering making an appointment with one of the New Orleans docs. I would love to hear another view on my pelvic concerns. I also have a call in to my regular GYN, I would love to hear her take on it.

Not sure why your friend had her hysterectomy. Mine would be strictly to repair the already significantly relaxed and non functioning pelvic muscles.
The damage is already done especially on one side. I do Kegels like crazy all the time and I think that has stabilized me although no improvement is possible. What disturbs me is that a urologist/GYN doc told me not to rush into surgery, the surgery to tighten the pelvic muscles is not always successful and in any case will only be temporary. Depends on how careful you are post-op, lifting stuff, constipation issues, etc. His message: live with it as long as you can. I hate having this at my age, my grandma had it much later in life. ARGGGGGHH!!!!

I feel like a whiny behiny. Sorry everyone.

Your outfit for your anniversay dinner sounds smashing, Laura. I can't imagine cashmere and boots though. It is still getting in the upper 80's here, shorts weather. I am so ready for another cool front, just something to blow the pesky mosquitos away.

Linda, my quilt is going up on the wall. Snappy (our golden) would make mincemeat out of it, she also rules in our bed. aw: Gotta find the right wall. It does have the rod pocket sewn into it so at least I don't have to add that (probably be 5 years before I would get to that).

GAGWTA!!!

thinking of you Donna and Christine.

 

[Christine]

Well, no luck with the surgeon today. They had no cancellations and don't expect to but they have no problem with me calling them every morning. So, I'll give it one more shot tomorrow morning. They are closed on Friday. Once Monday gets here--why bother? My appointment is on Tuesday.

I guess, in my head, I feel pretty good that this is *not* cancer. I just have this feeling that this has something to do with the last surgery (which was a MESS as far as I was concerned back then). But, there is no doubt in my mind that I will be having surgery again within the next month and I just don't want to do it.

Then, I'm wondering what do with this "other" lump they found at the very old surgery site (1977 and 1983). This looks just like the fibroadenoma that I had last year--but much smaller. I'm inclined to leave it be considering the mess the last surgery made of my breast--but I'm sure no one will want to do that....

 

[MinnieM3]

Snappy, you are not being a whiny behiny!! This is major surgery and requires a lot of research and soul ssearching!

AFter I have Stage 2 on Dec. 16th, yes I should be fine after the 2 week recovery. That's why I'm screwing up yet another holiday since I'll be off from school. ARAGH! I can't think of the last school break I had in about the past 3 years that I didn't have some kind of stupid surgery.

Anyway GAGWTA!

 

[laurabelle]

Laurie- I sent you a PM about the DIEP. Yes, my tattoo has a hidden Mickey...there is a pic of it somewhere on this thread.

Christine- Sorry you keep having to wait. Hopefully something will open up tomorrow...waiting over the weekend stinks, but I'd take Mon. if they had it! I hope you find a nice distraction in the meantime...

MinnieM3- Sorry you are having another surgery during the holidays. I am having one in Jan., it was going to be Dec. but I said, nope, it can wait...

Linda- Gauchos are back! I had to call Disney and Chloé walked in while I was talking...I tried to be cryptic, hope she didn't hear anything. She would keep it to herself if she figured it out.