Illinois ladies facing bc
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Jemije and anyone else who might be interested. Here are a couple of links describing the different types of reconstruction. The first link describes most of them. The 2nd describes a newer procedure that very few PS do (brava system using your own fat. Less invasive). If I were to choose that one I would go directly to the doctor on the link because he developed it. Please note that neither of these are my PS.
BTW all this sounded so barbaric to me when I first had to read about reconstruction. I was like "They do what!" And the scars scared me too but scars do fade with time.
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Welcome doxie! I love Hyde Park. When DH are REALLY REALLY hungry, we travel from where we live (Northbrook) to Hyde Park to eat chicken pot pies at Velois. We also go to the theater there. Just saw Invisible Man and now are planning to see Angels in America.
When we get an influx of new people, I tend to get all of them confused....like having two sets of identical triplets in the room at the same time. Overwhelming! But I do catch on so keep coming.
This genetic testing is scary. Too me, Spunky, that counselor DID NOT DO HER JOB. She lacked compassion. In her field would she not have some "back-up" direction for people who do not have genetic testing coverage.
No sun here!
Edited to clean up all my typos. I am losing my filters
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Zap she had no compassion. When I called back and left a message (after she didn't return my call) she called me back and left a snooty message that "I didn't call you back because was busy with other patients." Yeah that's a nice thing to say to a newly diagnosed breast cancer patient. That's when I started to look at other counselors at U of C, NW and Masonic.
Spunky I would seriously talk to another genetic counselor at another facility and let them know your situation or tell your BS or BS's nurse. (I can't remember if we have the same BS). I have a feeling they know she is a problem.
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Illinois Lady~ love Maya Angelou (hence, my signature)
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You all are great. Hawk suggested I post here, and she was right. If you are watching, thank-you, Hawk. It's like an instant family. People who have been there before or are currently going through what you are going through--very reassuring. Thanks to those who have responded to me.
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I know scarves are all the rage but this is a bit much.
Too bad I look terrible in green. The martin boob scarf would have been a must
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OMG, so funny. That made me laugh. I guess I"ll get the ones on the far right. Well its cold in Chicago!
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Omg Lago.... Ha ha.... I'd want the green ones too!!!
Welcome to jemije and doxie!!!! Sorry you HAD to find us but glad you did, welcome!!!!
I went out in public for the first time today.....with just MY hair!!!!! Omg, it was wonderful!!! It's still REALLY short....and "cancer patient" looking but I don't care!!!
And I leave for cancun with my girlfriends in 12 days!!!! YAY!!!!
Hope everyone had a great weekend....0 -
Sorry for all the changes.....got on here and discovered the picture/avatar I switched to was really too small.
I had a fantastic day.....finally finished weeding my rock/hosta garden, whew !!! Made a giant Waldorf apple salad....something I have always adored.
Angel food cake ready to slice and fresh strawberries in the fridge just waiting for after the bath and that old friend---my recliner.
Will be looking for all of you in the morning.
Hugs, Jackie
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Ok... Here's a question.... Did any of you get peach fuzz on your face after chemo??? What did you do to get rid of it? And did it come back? UGH.... First my boobs have to go and now I'm growing a beard....I'm being turned into a MAN!!!
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Regarding BrCa testing - Granted, this was 7 years ago for me, but I definitely did want the testing. I was told that I may or may not be a candidate, but my oncologist wrote a letter to support me having it done and BCBS did cover it. I have no sisters, only 1 aunt (liver cancer), mat. g-mother died young (early 50's) for unknown reasons, and my pat. g-mother did have breast cancer, but not until her 70's. Also, I was 44 at the time I was diagnosed. Even if they didn't cover it, I was still having it done because I wanted to know for my daughter, and my son.
I do have a friend who is BRCA positive, and her sister refuses to get tested. She simply doesn't want to know and doesn't want to deal with a possible postive outcome. Her choice, of course. That's just SO NOT my personality though. I work in diagnostics, I want to know it all, and preferably stat!
Jemije - First of all, welcome! The lumpectomy vs. mastectomy decision is such a personal one, as you can see by all the different choices made by people in this forum. I think the best you can do is to get as much information as you can, as you are doing, and then do what makes the most sense for you.
For myself, I considered a lumpectomy for about 10 minutes.
It just wasn't something I was ever going to feel was sufficient for my mental comfort. I had my mx within weeks of my diagnosis, followed by chemo, and several recon surgeries with TE's and an implant. I also had the other side lifted and a small saline implant placed so it would match the new foob. After a few years of alternating mammos and MRI's (my tumor was never seen on mammo either, only MRI), and after several scares with calcification clusters and more biopsies, I decided to have a prophylactic mastectomy of the remaining side. To be honest, I don't miss my original breasts at all, which sounds odd, I know. Not that I wouldn't prefer having them back and never having gone through any of this, but that wasn't my road to walk. So, I'm just grateful I had options and opportunities to help myself deal with all this cancer b.s.
All the best with whatever you choose to do.
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I cannot believe it's been 2 years since I had to make a decision to have a second lumpectomy or mx. I chose to do bilateral mx, nipple sparing diep recon, and I never looked back. For me, it is what felt best to my heart, and I think we have to go with that. It never did occur to me that I'd have no sensation in some places - not sure why I never thought of that. That was a surprise, although my numb areas are not terribly big, they could have been wider. Something to think through. Honestly, for me it was a good trade, since my imaginative brain was working overtime, and I needed to get it under control. A bmx did give me peace. Each person is different, and I really think in the end you will know what is best for you - not for your husband or relatives or friends - you.
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madismommy - I've always had peach fuzz. Lost it with chemo, but it came right back with the rest of my hair. Didn't like it until a student told me it indicated I was a good person. But you have to consider the source, he was a smoooooth operator.
invisible - Thanks for your concern. My doxie's IVD is well controlled. She was at her worst this summer at the same time I was in the waiting game with diagnostic mammo, U S, biospsies, etc. With crating, meds, no stairs, no jumping, her back pain is minimal now.
lago - fill those boob scarves with a little saline solution and they'll be an etsy hit.
zap - Hyde Park benefits greatly from U of C, and it's long established eateries. I love the abundance of trees and fresh air blowing off the lake.
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Madmom yes the peach face is normal. It will eventually go away. Some people do removed it and it supposedly doesn't come back. Mine took a while to go away. I just trimmed it with a mustache trimmer I bought from Ulta.
I don't miss my boobs that much either. I miss my eyebrows much more. The seem to get thinner and thinner every month. I had more eyebrows and lashes on chemo.
Well I"m off to get my eyes checked at my "condo" in the west loop
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Once you make a decision, the universe conspires to make it happen. ~Ralph Waldo Emerson
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"Oh What A Beautiful Morning".......88 yesterday and 92 today. If I didn't know better I'd think it was August. Cooler weather will come, but I'm not completely surprised about this....such a strange yr. that just continues on being strange.
Not sure I totally recall, but I think I had a fuzzy face for a short while. I still have no hair under my arms and I haven't shed one tear over that. Don't have any on my legs either.....but once I start wearing bermuda's and capri's and pedal pushers...who knows???
Hope you are all going to have a fantastic day.
Hugs, Jackie
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Happy Monday all. I spent another weekend wondering what the next week of waiting will bring. I am not sure if I can remember life without this feeling in the pit of my stomach. I am trying so hard to not let this define me.
Loved the scarf Lago!
Madmom, I have peach fuzz and 'beard' hairs now. I can't imagine what it will be like if I have to do chemo. I recall my sister telling my how unfair it was to lose every hair on her head, eyebrows, etc but still have a mustache!
Doxie - I really get what you went through while dealing with BC. I am going through it now with my dog. I know she is in pain and can't postpone her surgery. I am carrying her up and down the stairs.
Rene/kcshreve - I considered BMX for about 10 minutes after my multifocal diagnosis and suddenly got very scared. For that solid 10 minutes I was ready to cut them both off. I am not emotionally prepared to make that choice right now. I so admire you for knowing exactly what to do.
Zap - same experience as you with GC. I had to remind her I had BC. That just inspired my confidence.
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jemije5559 - I am so so happy that you posted here. We are all here for you!
doxie - welcome to this fabulous group.
Lago - the scarfs are too funny!
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Welcome to the new comers.
Hello to the rest.
Hugs to all.
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jemije I too was told I had a small IDC and could have lumpectomy with radiation or mastectomy bilateral or unilateral. I have very dense breast tissue. After a four day stretch of almost non-stop reading I chose to have a bilateral. When the final pathology came back they discovered that I had DCIS and LCIS on the left along with the original tumor and LCIS on the right which they never saw. So three areas they were not aware of. I didn't have an MRI since I was already going to have the bilateral. I also did not want radiation if I could avoid it related to the many problems with reconstruction that it can cause. I decided on the bilateral to help achieve symmetry of the breasts. And I did not want to have them possibly miss something due to the denseness of my breasts.
Everyone has to decide for themselves what is the best solution. So you gather the information and make your decision based on the info you have be at peace with it.
Good luck in your decision. The loss of your breasts is very hard, harder than people realize but in time you come to acceptance and move forward.
Good luck.
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Welcome to all the new girls!
Just popping in to wish you all a good week!
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whoa... so many new ladies. Welcome to everyone and so glad you found your way here to this very supportive and chatty group. Choosing the BMX over lumpectomy was an easy choice for me. I had very dense breasts also and my lump did not show on mamo or US. Took an MRI to light it up and then there sesre suspicious spots on the other side whichdid prove to be just calcs, but glad they are gone anyway. and will not have to deal with the nagging thought of making that decision again. Since I was also interested in reconstruction, I decided it was going to be easier to get a match if I started with a "level playing field", if you know what I mean. Even after the complications I have had with radiated skin, I would still do it over again. It is a really personal decision and do waht's right for you. My DH would not influence my decision. In fact, everyone refused to tell me waht to do. It had to be MY decision.
Being diagnosed with BC is definitely a life changer, but remember to find the silver linings and one of them is this fine group of supportive ladies. I could make a list of other silver linings, but will not get into that today. I am supposed to speak at a women's conference later this month. My preparation for that presentaion has given me pause to reflect on the past two years as I approach my 2-year cancerversary. Of course, with my upcoming surgery on April 11th, I am not sure that I will be sufficiently recovered to deliver that presentation, but it has certainly helped me with some psychological healing.
Five more days on antiobiotic IV's. This vancomycin has really kicked butt. Just waiting for my PS to come back from his little "castle" in the Canadian woods and get on with the show. I hope he appreciates my UHC insurance buying him a vacation.
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Gosh, I should spell check. Trying to be a good girl and wear my compre-sleeve all day and night since my LD flared up a few days ago. It is so darn bulky. BTW, "foobs" is not an" acceptable" word with WWF.
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Thanks for your comments, hopefulhealing. I find thinking about the loss of breasts much harder than some of my friends who seem to have no trouble saying "just get rid of them". Of course, they are not faced with the reality. And, they want whatever it takes to make sure I'm free of cancer. I will have radiation either way, as my tumor was 3.5cm. But hoping for low Oncotype so I can avoid chemo. I keep hearing that once the decision is made, people are at peace with it and it seems right for them. I think I just need a little more time and information. It seems that for those of us with dense breast tissue, there would be a better way to screen. I have been reading about Molecular Breast Imaging MBI for dense breasts. Anyone have experience with it? I read about it on the Mayo Clinic Site. It sounded like it is in clinical use for high risk women with dense breasts, cheaper than mammo and MRI. But on this site a search provides info that it is experimental and uses a higher dose of radiation than mammo's. It may have fewer false positives than MRI.
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jemije I have found that is very easy for those that have their breasts to say it is not that big of a deal. They do not fully understand the impact or the complexity of what is going to happen both physically and emotionally. And you are right they just want you here. But it doesn't make it easier for us that are faced with this reality and very big change in our lives on many layers and levels.
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Just passing on a pic of the compresleeve for other LD patients who may be interested. It has worked wonders for me. It actually replaces those darn manual wraps that I am sooo bad at.
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Yes, please do not let "friends" that have not been there influence your decision. One of the most insensitive commments I heard from a former good friend was, "I cannot imagine what would possess any woman do go to through that". She was commenting on my decison to go through reconstruction. She is NOT my friend anymore. Fortunately, she moved away.
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Geesh, darn sleeve. Maybe i better give up the keyboard for a while. Going for a good walk in this great weather.
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Density issues here too and I have to get an mri annually. Probably too much radiation, but that is the plan. Mammo and US also failed to find it. I did have the lumpectomy and am probably the only one here that sorta wishes I had gone through the big scene. It seemed huge at the time and the surgeon was not pushing me either way.
Joan, you are such a trooper. You have a lot going on in your effort to be healthy. It will come. On a far less worrisome note, do not fret typos. I am Queen of Typos and taught English for 20 plus years. And you play a mean game of Words With Friends There is only one person I cannot get near to and that is JanClare. She is a walking word master. We end the game with her 100+ points ahead of me. Humiliating
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