Dis Breast Cancer Survivors Part II -GAGWTA!

[MerryPoppins]

Hi all. Welcome to our newcomers.

The play is over and DD was swamped with compliments every night. It was so cool. I'll try to post a couple more pictures once we have them all. Then we had her Confirmation on Sunday. The last of the family left yesterday and instead of getting to relax and unwind I ended up with a migrane.

I have to say I'd choose mastectomy over Tamoxifen any day. I know not everyone has the kind of experience I had...we're all different. But the side effects of Tamoxifen were worse by far for me than the mastectomy was.

Hugs and prayers for all of you. GAGWTA!

 

[NHAnn]

SeaSpray and ScrapperBelle......welcome!!
As others have said, we have many who join us here because they have a loved one who had/had breast cancer, and others who are going through a scare personally. Survivors come and go, some come and never go it's all good. We share info and support, we also have fun. We're all big on Disney therapy for cancer patients and their families too, we think it should be covered by insurance Oh did I mention we goof and laugh as well as share serious stuff? You both have a lot on your plates right now, we're gladto helpwith questions, support...or just a diversion/laugh if you need one!!

Merry--that's wonderfull for your DD! Hope your migraine is better

GAGWTA!!

 

[CherylDan]

GAGWTA!!

How's everybody doing tonight?

 

[MerryPoppins]

My head is feeling better, thank you. My eye is still sort of sore and my neck muscles are stiff and sore. I hate, hate, hate migranes. They really do a number on me.

 

[snappy]

Ok I guess.

Working on my questions for my doc next week. I really need to know whether my mom's diagnosis changes the ball game for me, not to mention my sister.

In other words, do we need to look at the genetic counseling. And who should do it initially, me or mom? Since I was "first," do I get the honors?
Also, should I start getting MRI's?

I am coming up on 5 years next April. I want to know what we will do med wise after that cutoff. Tamoxifem has not been a problem for me, but what is next?

My sister is really sweating out her mammogram coming up Thursday. Her internist who she saw last week recommended having the mammogram done where my mom and I go as while the radiologist in her local clinic used to be good, now someone not as experienced is reading the mammograms.

Her doc also told her to get tested and have the phrophactice mastectomies. My sister really needs to talk to someone and hopefully calmer heads will prevail. I hope my doc doesn't mind me asking about her situation as well.

We are going to go to lunch after the mammogram with mom and celebrate her getting it done as she has been putting it off for awhile partly out of rank fear and partly to try and get through mom's deal as her saga started in July.
OMG is it really November?

I have never seen a true oncologist, the surgeon who is an oncological surgeon has been following me since my diagnosis and surgery in May 2004. I am going to ask him if I should start seeing an oncologist. I am not trying to ditch him, I sure hope it won't sound like that to him.

Mom is scheduled to have her squamous cell cancer removed on the 17th by a skin cancer specialist. He has the technology at his office to be able to determine the pathology right after removal so he will know if he has to take more while you are still prepared. The area is about the size of a dime but may be rather deep. Apparently these tend not to heal fast when on a leg so that is a bummer.

One interesting thing, the doctor himself phoned her this evening, took all her information directly from her over the phone, explained everything in detail and phoned in a prescription, etc.

I have to say the breast surgeon, the plastic surgeon, the dermatologist, and now this skin cancer specialist have all gone above and beyond with my mom. It is very heartening to have all these docs treat someone on Medicare in such a thorough and caring way. It has made it so much easier as she is so very happy with all of them.
I know there are some bad apples out there (such as the radioligist Dawn encountered), but we have have truly been blessed. It really demonstrates that there are many docs out there that are not just out for the money because I have seen how much Medicare and her secondary private insurance is paying and it is shameful. They are not covering their expenses on their elderly patients much less getting rich.

Tonight I am sending pixie dust and kudos to the caregivers, docs and nurses alike.

She'll get her second expander fill tomorrow. She also wants to find out how soon the implant exchange can happen. She has about talked herself out of just keeping the expander. The plastic said she could try that if she wanted but the breast surgeon said most everyone does the exchange.

I just think maybe not too many 78 year old grandmas have reconstruction so it is kind of new territory for the breast surgeon.

I am sure she is not a pioneer but I have been amused at how surprised the physical therapist at the hospital and bother her doctors have been at how well she is doing with regaining her arm mobility and strength. As the plastic joked, she will be pumping iron soon.

 

[Pea-n-Me]

Laurie, you don't need the approval of the surgeon to see an oncologist. Your primary care doc can give you a referral if you need one. What will you do if the surgeon says no, you don't need to see one? I think it's a great idea and would definitely go, too. The onc can order MRIs. I don't know if you remember but my mother had a skin cancer scare last year, too. The derm felt sure it was cancer, but the biopsy came back that it wasn't. I'd done a lot of research into both basal cell and squamous cell skin cancers and it seemed like things would likely be fine even if it was positive. Sounds like Mom is in great hands.

Melissa, hope you feel better. Loved the pic of your DD! How is your work coming along? We're still waiting for the builder to come meet with us.

Fine, Cheryl, how are you? Just sitting here watching the election, the rest of my family fell asleep on me. Had fun today voting - I let the kids fill in the circles and place the ballots in the box so that was cool for them, they've been studying the election process in school.

Ann, a lot of excitement up North tonight, huh? I've been really surprised with the turn around NH's seen recently, politically. A few years back my brother was planning to move there and showed me a "Welcome Packet" from the state which said something like, "You (MA residents) are welcome here, but don't bring your politics up here or try to change us". Interesting all the changes this election has seen all over the country.

Welcome, scrapper belle. Keeping your sister in my prayers. Glad you've enjoyed being here, and good luck with your decision, too.

jsg, meant to tell you something about the Oly software. I'd asked DH about it and he said you can set the defaults so that RAW pics go right into Oly. But that software really isn't very user friendly. I've liked using RAW (I think) but I need a more user friendly software. I'm going to try Lightroom, I think.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Merry - I am sorry to hear about your migraine. Those really are not fun.
Congrats to DD on a successful run of her show!

Laurie - Many hugs and good thoughts to you as you navigate through all of this!

Linda - I don't want the Oly software to be the default, so that's part of the problem! DH and I will have to discuss our options. I use Windows Gallery for everything, including making DVDs and so forth. Having the photos in 2 places on the same computer seems like it would suck up a lot of memory. I hate that I am not more educated about computers and cameras and photo editing software. But I am not willing to put forth the effort required to learn about all of it. This is DH's hobby!

I hope everyone else is well!

 

[Pea-n-Me]

We have ours in two places, too. They won't even come out on my Picture file until I've edited them in Oly! I'm finding it a PIA but I'm not really sure what to do about it. I don't that side of photography at all.

 

[laurabelle]

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

Prednisone is doing the trick. Loving the energy, hating waking up at 3 a.m. The kids were off school the past two days so I'm just getting around to a quick catch up...

SeaSpray- I am so sorry you are going through this. Yes, a friend of mine started www.facingourrisk.org and it is THE resource for hereditary cancer info. It sounds like you are doing a terrific job educating yourself. I believe that using Tamoxifen and/or an Aromatase Inhibitor is another prophylactic option along with surgery. I know you'll get lots of helpful on this site. Congratulations to your sister on 9yrs! I'm coming up on 10 myself!

ScrapperBelle- I'm sorry to hear of your sister's diagnosis. Yes, take a look at the site I mentioned to seaspray, it's wonderful. I was also diagnosed at age 36 with two young dds (they are my secret weapons!). I had both breasts removed, chemo, ovaries and hyst along with Tamoxifen and Aromasin. On 12/15 I will celebrate 10 yrs of survival! Your sister is in my thoughts and prayers.

Laurie- I have only been followed by my onc all these years. I think it's a good idea to seek one out. After 5yrs of Tamoxifen if you are post-menopausal you should start on one of the Aromatase Inhibitors. The survival rate numbers are quite impressive. I think you are probably at a better place at the moment to get the genetic counseling/testing done first. I am so happy to hear your mom is being treated so well.

GOOD NEWS!!! Hubby and I decided to splurge and just yesterday I booked a weekend stay for the Beach Club, just us two! Laurie I couldn't help but think of you and your dh! The kids have a retreat that weekend and I have help getting them where they need to be. We'll leave early Fri. morning, Epcot is open late that night, spend all day Sat and fly home late that night. No, not nearly as much time as we'd like, but we have never taken a vacation alone and the timing was right. I am so looking forward to reconnecting, just the two of us, relaxing, playing, being a couple. And I have the perfect excuse to start celebrating my 10th cancerversary early!

 

[snappy]

Enjoy your weekend, Laura. You and your DH sure deserve a little adult time together.

Perfect resort, perfect time of year for this. I think the F&W is still going on. You are going to love that short walk.

I hope you get the perfect room, not far from the hot tub, hopefully.

Hope it is magically and I'll be taosting y'all in absentia.

Linda, I am going to start getting some feedback on oncologists from other patients. I have heard there are some less than stellar ones in town.

 

[snappy]

Laurie, you don't need the approval of the surgeon to see an oncologist. Your primary care doc can give you a referral if you need one. What will you do if the surgeon says no, you don't need to see one? I think it's a great idea and would definitely go, too. The onc can order MRIs. I don't know if you remember but my mother had a skin cancer scare last year, too. The derm felt sure it was cancer, but the biopsy came back that it wasn't. I'd done a lot of research into both basal cell and squamous cell skin cancers and it seemed like things would likely be fine even if it was positive. Sounds like Mom is in great hands.

We have the path resuls from last week's biopsy, it was positive for squamous cell. The dermatologist has referred her to a skin cancer specialist, I guess he is a skin cancer surgeon. He uses his fancy microscope to tell immediately whether there are clean margins, whether he has removed all cancer cells.

I am scratching my head wondering why we don't have the same type of microscope when doing lumpectomies, so that the breast surgeon can tell on the spot whether he/she "got it all."

It sure would save a lot of extra worry, time , and $$$.
Maybe we are just down here in the banana republic that is Louisiana, but do you guys at these major breast centers have the benefits of knowing while the patient is under whether the margins are clean?

I say banana republic with impunity today. . . we voted overwhelmingly for McCain. And we have a great REpublican governor, Jindal.

Looking at the northeast, I think we are behind the times.
I am cautiously watching the stock market today.

off-topic. . . I ordered my photo Cd from the disney photo pass this am. I want to do a special album for our anniversary/RFTC/F&W trip. I think I ended up with 160 plus pictures after I added the borders,etc.

Any advice where to get them printed other than locally. Where do y'all have the best luck?

 

[Pea-n-Me]

Laurie, I think the issue may be in part that with breast tissue, it's larger and more complex, along with potential for more deadly metastasis, so it's better that the entire excisional area be examined by a pathologist very, very carefully, with all the tools available to them and without time constraints. (Picture it - "Hurry up, surgeon has a plane to catch, are there clean margins or aren't there?" LOL )

Your poor Mom, she's been through so much. Please tell her we're thinking of and praying for her.

 

[NHAnn]

Ann, a lot of excitement up North tonight, huh? I've been really surprised with the turn around NH's seen recently, politically. A few years back my brother was planning to move there and showed me a "Welcome Packet" from the state which said something like, "You (MA residents) are welcome here, but don't bring your politics up here or try to change us". Interesting all the changes this election has seen all over the country.

It is interesting, especially for me as a transplant from staunch Mass Democrat roots.

Laura, glad you are feeling better and how exciting to have a getaway plan with your DH!!

Laurie- your mom is inspriring. I'm beginning to understand where you get that "steel magnolia" thing.

I attended my local support group tonight, some old faces and some new...always interesting....

GAGWTA!!

 

[jackskellingtonsgirl]

GAGWTA!

Laura - I am so happy to hear that you are feeling better! I think a weekend away is the perfect thing!

 

[MerryPoppins]

How is your work coming along? We're still waiting for the builder to come meet with us.

We're at a standstill. DH has a pinched nerve that has been bothering him for about 3 weeks. He's been to the chiropractor and is better, but this week he suggested that DH might need an MRI to check for a slipped disc. Because he's feeling better, DH is in no hurry and it's making me nuts. The pain in his shoulder and arm is keeping him from working on the floor or painting. And I've done all I can do unless he helps me move some heavy furniture. So it's just not happening for a little while. I'm getting nervous because I'd like for the living room/dining room to be put back before Christmas.

 

[laurabelle]

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

I'm not sure if you all knew of this offer just out last night. I booked the the four of us at the Beach Club for 8 days with 8 day base tickets for $2660 next June!

http://disneyworld.disney.go.com/wdw/special/offerDetail?id=FY09Q2ValueOfferPage

 

[laurabelle]

I was really thinking of booking WL for June, but hubby and I talked about it and how the kids are getting older, if we were staying at one of the Epcot resorts how easy it would be to let them hang out in Epcot or DHS and we could lounge by the pool. The kids are so excited to be given a bit of freedom. It will make taking breaks a breeze. Oh yeah, and with my Disney Visa, 6months 0% on the $200 deposit today and balance due 45 days prior, I actually end up with a whole year to pay for it!

Hubby and I are going to have dinner at Bistro de Paris next Friday night. Never been since there's no kid's menu!

 

[laurabelle]

I was really thinking of booking WL for June, but hubby and I talked about it and how the kids are getting older, if we were staying at one of the Epcot resorts how easy it would be to let them hang out in Epcot or DHS and we could lounge by the pool. The kids are so excited to be given a bit of freedom. It will make taking breaks a breeze. Oh yeah, and with my Disney Visa, 6months 0% on the $200 deposit today and an additional 6 month 0% to pay off the balance due 45 days prior, I actually end up with a whole year to pay for it!

Hubby and I are going to have dinner at Bistro de Paris next Friday night. Never been since there's no kid's menu!

 

[SeaSpray]

GAGWTA

I just wanted to pop in quickly while I'm on my lunch break to say Hello, and to say thank you for the warm welcome, and for the info. Laura, I'll be checking out that web site this weekend when I get the chance.

2 weeks from today I'll find out whether or not I have inherited the gene mutation. It kind of feels like a flip of a coin since I have a 50/50 chance. I'm not a gambler at all, but even so, I don't like those odds. lol

I hope everyone has a great weekend, and I'm hoping to get back to this thread within the next couple of days.

 

[laurabelle]

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

2 a.m... am I the only sista up???

Terry- I hope you are able to lay this aside and find some happy distractions in the meantime while you wait out the test results. Know that what you are doing is truly groundbreaking. You are in a horrible position, but one that I think many of us who have had breast cancer would be grateful for...the opportunity to kill off the beast before it can pull the first punch!