Any Texas Hill Country BC Warriors?
Comments
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Hi y'all
Keepthefaith - glad you will have another opinion to help!
Ladies will shout out Austin area MOs...is there a support group to ask for recommendations?
Saw acupuncturist today for my trunk LE will start PT next week. Hubby is hubby thinks diabetes is no big deal....:(
Fall is in the air:)
(((Hugs)))
Cindy0 -
Keepthefaith-
I have been super happy with my team at the Scott and White in Round Rock- I see Dr. Christal Murray. I really like her and everyone on staff there.
Cindy- when you are already dealing with so much, it can be a very big deal. I hope things get better.
Waiting for consistant cool fronts...
jeni
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Thanks JWoo and RMlulu,
I guess I will be on the phone today trying to sort some of this puzzle out.
Yes, some consistent cool fronts would be great!
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Shout Out!
My cancer center offers a mix of tai chi, core strength, meditation, Lebed, massage, walking, sort if east meets west...read Traditional Chinese Medicine for BC...on recommended book list from this site.
So surprise massage therapist suggest accupanturist for my trunk LE...well I feel so much better...a noticeable difference...yippee...I even did a moxi stick over points...smells funny...but a very good day LE pain down:) going back next week for a few more pins and needles haL
Keepthefaith - good puzzle pieces!
JWoo - fall breezes ...will you be doing rads?
How's everyone!
(((Hugs)))
Cindy0 -
Hey all just got back from metastatic breast cancer conference in houston yes i use bcrc for the last 2 years. great help!
I go to Austin cancer center my onc is Dr Downie my Rad onc is Dr Gafori nuro is dr Wilson. they are all Great especially since i was diagnosed stage IV out of the gate i also have use accupucture for2 years now and it helps!
love and blessings-chris
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Cindy- glad your pain is down!
No Rads for me- I am very lucky.
I am having a double mas on 10/25 though, with DIEP recon. It will be my first surgery ever. Trying to stay positive about it! but it is not always easy
Keepthefaith- hope you got some good calls in.
braids3- how was the conference?
looks like we may get some cooler temps and rain this weekend (not holding my breath for the rain)
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The conference was good hook up with the integrative medicine dr about md andersons yoga teacher training for cancer patients. all the speakers were video taped and will be on metastatic breast cancer network web site i'm defiantly going to check it out cause i couldn't go to all of them. glad its cooling down. just had a biopsiy on
my upper arm for a rash so i got a little anxiety going on but other than that doing good.
love and blessings to all- chris
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Thanks Braids3~
I will be keeping my RO, Dr Ghafoori, also! He's wonderful. Nurse is Gina. Still searching for the right MO. I'm glad your conference was worthwhile. I hope your rash is resolved soon.
RMlulu, awesome that you are getting pain relief!
JWoo,
The thought of surgery can be frightening. It's totally normal to feel that way. I have had several and have always recovered well. Our bodies are amazing things. A month of waiting seems like a long time, I know. If you have confidence in your team, that will play a big part in the process. Just know that they are experts in their field and are doing all they can to help you heal and recover quickly. Now that you have made the decision, it's one step closer!
I think I will be having my lumpectomy/port placement on the 18th of October. It seems like forever b/c I want to get it done and get this out of my body. I would do it tomorrow if I could.
I hope you all have a wonderful day!
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Keep the Faith:
I am not sure who you have already seen but I also sought out a second opinion after my frst MO seemed flighty and I got to see her personal notes n my chart - she wrote things that just didn't happen. I got mad and decided to follow my gut and seek a different opinion - after all, this is MY health and I need to fight for what I feel is right. I am glad I did.
I called Austin Cancer Centers and asked the appointment scheduler to get me an appointment with the doctor she would want if she was diagnosed with cancer and she set me up with Dr. Allison Gorrebeeck. Best thing ever for me. She was extremely patient, knowledgeable, and gave me all the time I needed. There was no rush in, rush out. She also talked to me like I was knowledgeable and could participate in making a decision - something the other place didn't really do, IMHO. I am very happy to have found her and am extremely comfortable in her care.
Good luck! Oh, and if things don't feel "right" with the next one: KEEP SEARCHING. This is a person who is going to be in your life for a good bit. You might as well feel both comfortable and cared for. Remember that you are worth it!!
Peace and love,
TxLacrosseMom
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Ladies:
I have to concur with the care from Dr. Gafoori - the most amazing, kind, patient friendly doctor I've met in my journey. I would encourage anyone here who needs radiation info or treatment to seek out his input.
My story with him came from an RO giving me about ten minutes, making me feel like crap for "not taking my health seriously" and trying to sign me up for radiation. It so didn't feel right. I felt pressured and demeaned and when I left his office I was so confused. So, I went looking for a new MO as well as a new RO. Found both and when I went to visit him, he spent an hour plus with me. Actually reviewed my entire report with me, pulled up my mammograms, showed me what he was and wasn't looking for, and was very through. When he finished, he too thought I should get radiation but then he promised me he would call my surgeon and the pathologist to get their full patient notes. He also promised to consult with his associates at Duke (yes, DUKE) before making a final decision. He did every single one of those things and called me - not his nurse - HIM. I received the news from him that the group as a whole re-reviewed my case and it was a solid opinion across the board that I did NOT need radiation.
What an amazing amount care. It was by far nothing I expected and everything I had hoped for. Please, if you need an MO, please go see him and be prepared to listen. He really does have your absolute best interest or at least he did with me. If we rated these guys on here he would be solid 10 in my book!
Peace and Love,
TxLacrosse Mom
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TxLacrosse Mom,
Thank you so much for your input. In fact, I have made an appt with Dr. Goorebeck for a consult on the 3rd! She is actually closer to my house also! So, I am hoping I have my team and plan together soon so I can kick it's butt! Are you also working with Gina? She is awesome and trying to get my surgery moved up from the 18th to the 8th. I've gone round and round with BS nurse about not wanting to wait; but she told Gina that she had no idea that I wanted to start treatment asap! So, I will know on the 2nd about when my surgery is scheduled.
Jwoo, Braids3, RMlulu,
I hope you all are feeling well and can get out this week-end and enjoy the cooler weather!
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Hi y'all
Fall is here!
With all the busy schedules...would you like to try a meet up mid-oct say 10/14.
Not sure if a Monday would work or if Sat 10/12 would be better for those working .
Give a shout out...we will give this a go...
Once day set we can pick a location say I35/1431 or I183/360... Lots of places to eat and chat:)
Happy TGIF!
(((Hugs)))
Cindy0 -
yes either one would work for me can't wait to meet ya all i love dr g and dr wilson both are great!
love and light chris
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What a wonderful idea this was to help connect us in person. I too live in the Texas Hill Country in Bandera County.
I am going to a protest rally in Austin on 10/12 so I hope a different date it set for the meet up. Or we could all go to the protest and meet up in the Austin Area. Just a thought.
Excited to find this thread. xoxo
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Hi y'all
Mon 10/13
Or
Fri 10/17
Let me know! I can wait to meet y'all too
JWoo - sending calm positive thoughts for surgery 10/25! Chemo has kicked and shrunk c out of there! Stand strong brave warrior we are in your pocket.
(((Hugs)))
Cindy0 -
rmlulu,
Friday is the 18th; did you mean thursday 17th? Mon is best for me, as my surgery is scheduled for friday 18th...if monday doesnt work for you all, I will try to catch you next time.
Good night!0 -
Let's meet on Monday!
I35/ 1431..will Mimi's work say 1:15 so the lunch crowd is leaving and we can linger!
PM and I'll give my cell,
Soon!
Cindy0 -
Monday sounds great. Mimi's at the Outlet Mall? Can't wait to meet you all in person!:)
Enjoy your week-end~0 -
Mon works for me.
Mimis is in Arbor walk off braker and mopac la madalines is the one in the outlet mall
had onc appt yesterday and my wonderful run with xeloda is over i now have skin mets the rash on my arm is C start something new next fri.
can't wait to meet u all yeah0 -
Hi y'all
Let's do Mimi's at the Outlet Mall off I35 at 1:15!
So looking forward to our meeting
PowerofPink have fun at protest...will you be able to join us?
JWoo sending heart warming smiles and calm confident thoughts for surgery.
TXLacrosseMom will we be seein you?
Enjoying the cooler weather
(((Hugs)))
Cindy0 -
Been missing in action....guess I needed time off to not think about the C word. So, which day are you guys meeting? Is it October 7 or the 14th? Next monday is a no go for me as there this doctor's appointment...
Is it the Mimi's at
NB Bldg O
10515 N Mopac Expy
Austin, TX 78758(512) 241-03090 -
hi mshelton
We are meeting Monday October 14 at the Mimi's adjacent to the Round Rock Outlet Mall
Interstate 35
At 1:15
Hopefully the lunch crowd will be leaving and we just enjoy!
See ya soon0 -
Well ladies-
I spoke too soon. That'll learn me.
Apparently my BS, the tumor board at her hospital, and the RO all seem to think that radiation is in my future, so no immediate recon for me as I was originally planning. My MO did not think I needed, and did not recommend rads, but the BS said with my age, 2 different types of cancer in the same breast, and family history that it is highly likely there may be some lingering cells even though the MRI showed complete clinical resolution after chemo. I suppose it is better to be safe than sorry in these instances, but it really has thrown me for a loop.
I won't be able to make the get together as my parents are coming up for a visit, but big hugs all around to you all.
Keep your fingers crossed for me that the biopsies all come back clean and clear. I really don't want rads.
It has been wonderful this week to have the windows open 24/7- i don't even care about the allergies!
My hair is coming back in- but it is a bit patchy. I hope it doesn't stay that way!!
Lots of love to all of you and hope to be able to meet up next time!0 -
hi jwoo. I'm sorry about the rads recommendation. I know how you feel as I was adamantly against rads and all for immediate recon. I tried four different docs and couldn't get any of them to tell me what I wanted to hear. All stated the same reasons you did, other than family history. It stinks to have your parade rained in but I figure being triple neg, we have to hit it with everything we can. Of course, it runs out I didn't have a complete response to neo adjuvent chemo, so I am having to do more chemo at the same time, in addition. Turned into a hurricane on my parade. Lol. Rads #1 down today. So far, so good. Good luck to you.0 -
Hi y'all
JWoo -yippee family is there...best medicine laugh and hugs We are in your pocket for surgery! Sorry that your tx may not go as you planned, but you've got a great team...you will rock rads! Remember focus on today! Sending calm confident thoughts and prayers for surgery and path results ) you will be fine brave warrior!
Delirium Pie - yippee laser tag warrior #1 done! The first few days are the hardest as we adjust to the daily grind, find our safe spot for our mind, and come to terms with the table, machine, healing light, and realize...Yes, I can do this zip zap...hydrate moisturize and pamper yourself!
Looking forward to Monday 10/14 at Mimi's 1:15pm around Rock Outlet Mall I35!
(((Hugs)))
Cindy0 -
Jwoo,
I hope your biopsies come back okay and glad your new hair is starting to emerge! I know that must make you feel better!
Sorry for your disappointment in your treatment plan. These ups and downs are hard. Nice that you get to see your family, but wish we could see you too! Hopefully, next time.
I think I will be facing rads, too. They are pretty much going to run me through the mill, I guess. My tumor is aggressive and not in a good place...as if there were a good place!:) Fortunately, it is er+, pr+ and Her2-. I did have my BRAC test done and it was negative also! So, I guess I have a few positive things going for me. Did you get a BRAC done, JWOO?
My mom was DX'd at 60, my half sister at 27; both are well 19 and 15 yrs later. So, family history was not really family history I guess, in my case.
DP, hoping your rads go well for you!
Wishing you all a restful night~
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Hi Ladies-
Thanks everyone for your encouragement and kindness. It means so much!
I did get the BRACA test- negative for both- but those are just 2 genes out of .. millions? My P/grandmother had bc at 88, and we have countless cases on that side of the family, on both my g-pa and g-ma's sides. That $4k test doesn't tell us much in the long run.
DPie- so sorry to hear it- I hope they get it all this time around!
Now I need some help -
I am looking for recommendations for bras to wear- I don't want to wear prosthesis, I just want something to hold what is left (the "shar-pei boob" as I have heard it called) comfortably in place until I can get my recon, and can't seem to find a thread that mentions anything specific to this situation. Anyone have a bra they love that is in/has been in the same situation?
love to you all ladies!0 -
jwoo,
can't help you with the bra, but I bet there is someone here who can point you in the right direction. Have you contacted the BCRC? www.bcrc.org. Helpline: 512.524.2560.
My MO mentioned Lefrumeni Syndrome as something genetic also, but I really haven't researched anything on it or asked her much more about it.
I hope you all have an enjoyable week-end!
HUGS!
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I went to a women's shop specializing in mastectomy bras and my insurance is going to cover 3 of them. They are nice and soft and they will have pocket that pads can be put in. I wasn't sure that was what I wanted until I got to look at them.
I also am doing rads so my DIEP has been delayed. I had skin sparing BMX with TE's with a little fill. I will not be getting additional fills but he put enough to fill the skin area to hold it in place until we can do the DIEP.
I am located near Houston.0 -
JWoo -ask your BC center or support group for recommendation for a shop specializing in mastectomy bras and garments. Then call and make appointment for fitting when you get the post-op ok. Your BC team may have recommendations and you will go home in a special bra.
Now breathe and enjoy your weekend! Sending positive calm thoughts:)0
