Anyone In Phoenix, AZ Area?

Bonnygg

Hi ya Meekone.

Decisons, decisions.... none are easy and they will stay with you for the rest of your life. Its a very, very tough time for you right now. Talk to everyone you can. Get their input, absorb their experiences, WRITE DOWN all questions you want to ask your Dr's. You'll hear a ton of statistics & percentages. Don't panic. If need be, tell the Dr's you need 24 hours to think about things.

When I was dx'd, I made a decision. I would do everything I could to make sure I survived and that in the end when I looked back over my shoulder, there would be no doubts, no *what ifs*, no regrets.

I was lucky that I was only 1cm. I had a lumpectomy followed by mammosite then chemo. Now here I am 6 years later and I have to face a double mx because I'm BRACA1+. If I didn't have the gene, I wouldn't be doing the double mx. I took Tamox & am now on Femara. I've had a few issues with both, but, nothing I couldn't deal with.

I agree with the ealier post. If you decide to have the mx, have it done by a breast surgeon. I like using specialists when I can. They know the lay of the land, they understand how to produce the best results. And, your surgeon & PS must be part of a team effort. It's best if they have worked together before. Think of your *girls* as art work under construction. You want the best craftsmen working on them.

The thing about the genetics testing is that IF you are positive, you'll need to deal with the ovaries.

If you can do mammosite, I would highly recommend it. Ordinary rads would have clipped my heart & lung which is not good. With mammosite, no such issue & I was done in one week. Regular rads take much longer.

Chemo... My onc was on the fence as to whether I should or not. But like I said... no regrets... so I took it. Come to find out, I was alergic to the chemo, had problems breathing. Onc didn't want to give me #3 or #4 dose. I pushed like hell to get them. I survived the chemo & alergic reactions. My Onc was very surprised I didn't end up in the emergency room!

I've struggled with whether or not to do reconstruction. At my age & weight, an 8 hour surgery comes with some significant risk. But, back to my yardstick of *no regrets*. So, DIEP it will be. I'm going to give it my best shot and if it doesn't work out, then, I'm ok with it. I would rather to have tried and failed than to not try at all.

If rads and/or chemo is your path, line up your support system of friends & family. Asking for help is no shame. In fact, the people closest to you want to help in any way they can but they don't know how to help & are waiting in the wings, ready & able. It's healing for them to help you.

This is a long dark tunnel that you must get through. Have faith that you will get through it. It will take a while before you see any light at the end of the tunnel. But, this board is FULL of many, many, many of us that have gone through the tunnel & come out just fine on the other side.

Good luck with your decisions. Don't let them weigh to heavily on you.

Gentle hugs,

bonny

KinAZ

welcome bonny...glad you found us!!  we will be getting together in a few weeks.  Ebann, aka, Elizabeth will be along soon to add you to our list.  we are very supportive and like to have fun!!!  Elizabeth and I both had diep's at mayo...i had dr rebecca, she had dr casey...they do excellent work.  since there are many of us all over the valley, we try to carpool....so feel free to jump in!!!  i am in chandler but we have several west valley girlz....looking forward to meeting you, and be sure to pm me if you have any diep questions!!!

hugs, karen

mindyc

Hi,

 I just wanted to introduce myself.  I didn't read all the posts so this may have already been posted.  The Young Survival Coalition Phoenix is now here.  If you don't know the YSC in a national organization supporting young women with breast cancer.  The website is youngsurvival.org.  We meet the 2nd Tuesday of every month from 6-8pm at the John C. Lincoln Breast and Reseach Center located at 19646 N. 27th Avenue in Phoenix.   Would love to see some of you out there.  It is an amazing group!  You can private message me also if you want more information or anything!  

 Mindy

Meekone

Hi Ladies

didnt realize I hadnt updated here in a bit.  I got the genetic testing back and I am BRACA 1&2 Neg.  Mayo made me go in for another Biopsy...GURRRRRR! That dang old man took I swear at least six additional tissue samples, which all came back clear but good lord!  I have never cried in the doctors office but I couldnt help it this time, I couldnt help but feel like it was unnecessary considering my surgery for BLM was scheduled a week later (WHICH JUST HAPPENS TO BE TOMORROW). I know they are extra extra thorough, but geesh, you will have both breast in their entirety come tomorrow.  And can run as many test as you like on all of the tissue.

Ok I am done whining for the day.  Feeling upbeat about tomorrow, just ready to get this part over.  I am somewhat surprised at how calm I am.....its interesting.  I hope it last!  Did all my shopping now just trying to tidy up the house a bit and make sure everything is in order for when I come home.  Will post when I can.

Meek

KinAZ

Meek, glad to hear from you, good luck tomorrow, i will say a prayer for you....be sure to give us an update when you can!!!

 Mindy, thanks for the info, and hope you can join us sometime!!!

hugs karen

ebann

Meek I send you blessings for today you will probably get this after the process. I just want you to know that I am thinking about you. Prayers your way! Yes keep us updated please.

Mindy hope you are able to join us sometime we are a great bunch of sisters to hang out with. Looking forward to meeting you.

Meekone

Hi Everybody,

everything went well with BLM, had some slight issues with paid meds which required me to stay in the hospital one extra day, but now all of that is under control and I am home recovering.  I did have a Skin Sparing MX was supposed to go into immediate implant however my pec muscles were too tight and had to go directly into 400cc with Tissue expander.  Havent looked at results yet will once I am a little less sore. But the doctors were really happy.  I will post more in a couple of days.

Meek

ebann

Meekone: I am glad to hear that everything went well. Never heard of having to staying in the hospital cause of paid meds or do you mean pain meds? I hope when you look at the results you will be as happy as the Dr.'s are. Quick recovery thoughts and prayers your way. Thanks for keeping us updated. Look forward to hearing from you again shortly.

ebann

Received call from Dr office. Was told that the chemo is showing a good response and there is no spreading to the lungs. So my appt with onc is the 23rd and I will find out if it is shrinking in the areas or if it is stabilizing. More than likely will continue to as we are until done which will be the end of June. Probably another Pet Scan in July then go from there.

ebann

Let's get to know each other better!   Time for coffee!  

Location: Copper Star Coffee http://copperstarcoffee.com/  

4220 N 7th Ave.
Phoenix, AZ 85013

Sun - Th: 6 am to 9 pm
Fri - Sat: 6 am to 11 pm  

Date: Saturday March 19th   Time: 3pm

neesie

I haven't stopped in here for a long time!  I'm the Michigander who visits AZ!  I will actually be there on the 19th.......bummed though, as I'm sure Saturday will be my prime visit time with the kids......Ebann, didn't know you were going through all this again................sounds like things are going in the right direction.  Many a hug and prayers for you (and all you AZ gals!)

Denise (neesie)

teesa2you

I am glad I found this topic. I am in the Arrowhead area. I had some slides that were sent out to Vanderbilt for a "Atypical Proliferation" And also have a 2 cm fibroadenoma. My PCP wants me to see a breast surgeon but I want to wait to see what my results are from the vacu assist biopsy. I went to the John C Lincoln breast health center to have that done.

I imagine I will need an excisional biopsy done. To check out the margins for DCIS. Any idea where or whom I should go to? 

KinAZ

welcome teesa...sorry however for your news.  there are several of us here, and use drs. all over the valley.....i go to mayo, and have been very happy.  the most important thing is to have a doctor that you like.  able to communicate, one that listens to you, and you must trust them....it is really important. we are getting together on the 19th and would love to meet you.  you will find wonderful support and encouragement from our special group.  i will let ebann know you posted here and she can send you an email.....best of luck, hope to meet you

hugs, karen

teesa2you

Thank you Karen!

The waiting for the results is agonizing as I am sure you all know. I got the call at work from the radiologist, everything happened so fast. I was scrambling to write down the words she was using. "possible pre cancer""atypical proliferation" etc.

Has anyone here tested BRCA+ and have information on where I should go? My mother passed from ovarian cancer and father's sister had breast cancer. I would love to get together. I have been to the mayo clinic in phoenix for another surgery I had in september on my adrenal gland (another rare tumor-surprise!) They were wonderful, but they don't take BCBS of AZ.

neesie

Question for you gals.........Do you know of places in and around Mesa that sells Decorative Pottery?  Raku, Horsehair and such............I love picking up a couple pieces when I visit, but my traveling throughout the State isn't happening as much now.

Has anyone heard of   Pamelas Pottery, 1917 South Sabrina in Mesa?  Just found it on Google.

Thanks!

Denise

Meekone

Hey EBANN

I would love to meet up with you ladies for coffee, I will put a reminder on my schedule, count on me being there.

Meekone

nora_az

Maybe one day I can finally make it!  The first time I was newly post op from my DIEP procedure, 2nd time was the day after TX.

I live here in the far West Valley

Cydz

Hi Teesa! Welcome. I am BRCA 1+. I was tested at my oncologist's office. There is a website for a group called Force

 http://www.facingourrisk.org/ 

A great site about hereditary cancer. Very informational. There is also a group here in AZ called the BRACateers and it is run by the Mayo and Scottsdale North hospitals. It is a support group for BRCA positive people. The woman to contact is Katherine Hunt 480-301-4585. I hope this is helpful. Keep me posted!

Cindy 

Meekone

I've met Mrs. Hunt, outsanding woman......the Mayo Clinic is top notch!

nora_az

I cant say enough about the Mayo Clinic as well!   I'm not part of the BRCAateers but just making a statement on the care I receive from Mayo as a whole. Finishing TC treatments there tomorrow. Will follow up with herceptin till November.

Meekone

Hey Nora, who is your Oncologist?  I would love to hear a little more about your chemo experience, I am scheduled to find out if I am a candidate for Chemo tomorrow at Mayo.  If I am my doc is suggesting 4X TC followed by tamoxifen for five years.

Meekone

Oh I saw on your personal page Dr. Northfelt, that is my Oncologist also.

nora_az

Hi Meekone

Yes, Dr Northfelt is my oncologist but to be honest I dont see him when I go in anymore. It's always Jane Hadley who is a nurse practitioner. I like her a lot. I figure it's a good thing that I see her, if it's protocol that when all is going ok I see Jane then I'd rather see her all the time. If Dr Northfelt came in I think I'd be a bit nervous if you know what I mean!  I do know from what Jane says, he is in close contact with her and is well aware of what is going on with all of us.

I will be there tomorrow all day long! I start at 9am and wont be out of there till probably around 4pm.

My chemo schedule is TCH 6x (tomorrow is my 6th YEAHHHHHHH!!!)  every 3 weeks and I will continue every 3 weeks with the Herceptin till around Thanksgiving. I will also be going on Tamoxifen soon after my TC treatments, I will be talking with Jane about that tomorrow.

Did you have a lumpectomy?

KinAZ

Hi, I also had Dr. Northfelt!!!!  And standard protocol at mayo is to see the nurse practitioner.  I was very impressed with mayo....i had a reaction to adriamyicin..the red devil....and he came down to the infusion area, to have a personal look at my arm.....another time, he called me at home, while he was waiting to board a plane....because i had a question the np could not answer......i also had a bad reaction to the taxol...and she conferred with him to make the necessary changes....It allows the onco more time reviewing research and seeing more patients....mayo is big on research!!!  i finished chemo sept 08...and my follow up is every 6 months....blood work up,,,,but mayo does not do cancer markers,,,too many false positives, and i am seen by a nurse practicioner.  i am on arimidex now for 2 yrs...and the side effects come and go.....i am looking forward to seeing everyone for coffee.

hugs, karen

KinAZ

Nora,,,just had to add...dr rebecca is my plastic surgeon as well...isnt she wonderful!!!!!

nora_az

Hi KinAZ

Dr Rebecca is the BEST. She is so personable and I totally trust her with anything dealing with me. I do have a hernia I need to see her about after my chemo is done so in about a month. A hernia was found 3 months after my DIEP procedure. I don't blame her at all. I am quite sure it was me doing too much too soon. I have total confidence in her work.

My mom was on the "red devil" From what she went through I was thankful for my TCH treatments. It really hit her hard. So have you been fine since you finished chemo? I am hoping for a bit of normalcy after this is all over with. I know I have the scans and visits etc but just to be able to feel normal and start up my hard work outs will be good. 

I didnt know that the Mayo doesn't do cancer markers. Do you have PET scans? I suppose I'll ask Jane what the protocol is now that I am finishing up the chemo portion today.

Would be great to see you and everyone for coffee sometime!  What part of the Valley are you in?

Hugs back at ya!

Nora

ebann

Hi Tessa2you, meekone, nora_az I do hope everyone has a awesome day! I am going away this weekend with my mom and daughter up to Sedona. Nice change of scenary from the valley. I had my PS by Dr. Casey at Mayo Clinic all I can say is they have the best there. I have been pleased with the way things have been handled and the excellent care they have given me.

Tessa, I tested for the BRCA and it came out negative. I did mine at Vinginia C Piper in Scottsdale. Very professional.

Meekone, How exciting you are going to make it to the coffee shop. It will be so nice to finally meet you. We love meeting new ladies.

Nora_az, good to see ya. I am glad to hear you are doing well. Seems like you and the girls already have some things in common. All of us girls live all over the place. We have some that live in Cottonwood, El Mirage, Glendale, Peoria, Phoenix, Mesa, Paradise Valley, Tempe, Chandler, Gilbert. If I missed your city sorry. I try to choose a central location for us all. For awhile there I was going to the other side cause everyone was in that direction now it has really spread out.

My oncologist is Dr. Ondreyco. She is wonderful so grateful I still have her. Going though cancer the 2nd time. The breast cancer has spread to my bones after being a year and half cancer free. So I was not expecting that. So dealing again one day at a time. My your day live it to the fullest girls. See you on the 19th..COFFEE!!!!

nora_az

Hi Elizabeth,

I hope you have a great time in Sedona. That is one of my favorite places to spend the weekend. It' so beautiful there!

I am very iffy for Saturday. That is just a week after my TCH treatments. After today I will be on Herceptin only so it wont be too bad and I should be able to make the next get together!

My friend has Dr Ondreyco. In fact she highly recommended her when I was on the hunt for an Oncologist. I have a real weird insurance and anything out of network they pay ZERO, I have to absorb the full cost. It seems you can never control who your assistant surgeon is, where they send pathology and where they send the stuff out for labs. This is one reason I selected Mayo. Everything they do is in network so I am safe there. I still have a ton to pay with deductibles and out of pocket but at least I don't have to worry about out of network with them. Now that I am there I am so very happy.

Have a great weekend!

Nora

o2bhealthy

Oh EBAnn I am so bummed that I will be out of town this weekend while you are up in my neighborhood!  The weather has been beautiful in Sedona

ebann

Went to Dr. today and received an awesome report. The  tumors from my spine are gone and the tumors in my femur and hip have shrunk substantilly to the point that my Dr. considers me in remission. I am off chemo for a few  weeks and then we will be discussing maintenance care. Praise the Lord God is so Good!