2013 Sister Warriors

Cuetang

Thanks Soteria205 and Speedy4 for your words of encouragement. Speedy4-- good luck with surgery next week and keep us updated .



Longwayhome-- welcome to this bandwagon. We've got a great group of women here, that have been real supportive through each of our various emotional roller coasters. These boards have been one of my outlets where I can safely vent and have those that understand me. Someone called it "hurry up and wait" ... And I agree that it totally sucks!

Vintagelearner

I've just spent the last 2 hours reading through most of the posts from the Sister Warriors, and I think I need to give and get your virtual hugs! I was diagnosed Dec 24 with a recurrence of BC based on my every 6 month mammogram which was clear 6 months ago. Now I need a mastectomy, and probably chemo, since I already did a lumpectomy and radiation for DCIS in 2010. This is NOT the challenge I wanted to focus on for this year! I've done all the prep for surgery at the same location as the first time, but also decided it was worth the effort to get to a bigger cancer center for 2nd opinion. The 2 surgeons independently plan to do the same surgery to eliminate the cancer, but the plastic surgeons differ greatly so for now I will not have reconstruction.

Thank you all for sharing your thoughts and fears and attitudes. It's good to know I'm not alone- you are letting the little voices in your heads speak, so I feel safe talking here, too.

pacools

Welcome to our newest sisters. You will find our emotional journey is one day at a time up and down but we try to insert some humor and our collective strength. Vintagelear I am sorry you have been re diagnosed after a few years this sounds like a whole new fight warrior sister we are glad you are here with us.

PositiveThnking

Hi all -  Just catching up on posts.  Welcome to our newest sisters.  Like pacools wrote, its ups and downs and a safe place to express ourselves.  Doing well today.   I've got first round of chemo scheduled for this Thursday.   One step closer to the end of treatment.

TMM60

Welcome to our new sisters- you are most welcome here and know you will find a it safe and comforting place to share our journeys together! I had my first round of TC chemo yesterday. All went very smoothly and other than feeling very tired today, I am comfortable and glad to be on the path of treatment. Got my mid back length hair cut short today by a lovely woman who is also a survivor and has a nice quiet salon nearby. I thought that seeing my long hair go would be traumatic and picking out the wig, but my hair is actually cute and the wig does not scream "look she's wearing a wig"!

I hope everyone is having the best evening possible!

study411

Count me in. I got the diagnose a few days after christmas 2012. Right breast mastectomy done 2/1/13. . Was devastated with the +ve lymph node finding. Will see oncologist end of month. Probably chemo. I dreaded the idea that this fight still have a long way to go, and frankly I don't know if I can do it...

lemon68

Hi All

I have news.. My MRI came back with nothing suspicous on the left side and nothing we didnt already know about on right! WHEW! Went to my first meeting with MO and RO yesterday. They scared the shit out of me talking about mets. And for me NO Chemo, he isnt even going to do the oncotype test, said it would not benefit me. Makes me wonder since I had the isolated tumor cell near nodes but neg. nodes. I didnt want chemo so I am happy but just want to me sure there are no cells wandering looking for a good place to call home elsewhere in my body.

Pacools- I have to do the BRCA gene test and wait for results 1-3 weeks. Once in the RO said call and he will bring me in that day for sizing and start immediately. As long as BRCA is neg. we will be doing it togethor. Of course I dont mean to say I am glad you have to do it but I am glad we will do it togethor. How many weeks? The center I am going to no longer does 6 weeks, they cut it back to 16-22 sessions. Explained that is what they do in Canada, same results as 6 weeks and less of a strain on patient. He says US is now doing it the same way.. I hadnt heard it.

Welcome to all of you that have recently joined. Wish you didnt have to join but glad you are here with us.

Longwayhome- Your allowed to SCREAM!! do it if it helps. I did alot of crying in the car and the shower,  I mean bawling so hard I couldnt breath. Then I would become pissed off. In fact I am still having my moments of tears and being just angry and yearning for my nice life back. Mostly though I am scared, so scared. The constant waiting is the worst, I was DX on 1/4 and I am still waiting. Each week I seem to get more answers but still pieces missing. I do now see it all coming togethor. Hang in there, we are here.

lemon68

study411- I understand. I kept saying "those" women are strong and brave I am not like them, I cant do it. I AM doing it and this past week realized  I am proud of me. We are one of "those" women, not by choice but we are.. you will find strength you didnt know you had in you.

((HUGS))

lemon68

TMM60-

 I bet your hair looks great! Glad your 1st chemo treatment went well.

VintageLearner- I am sorry (((HUGS))) its just so unfair. You shouldnt have to do this twice. Why do they not want to do immediate reconstruction? I am glad you found a place here to feel safe.

Positivethnking- Good luck this week on your 1st TX. Let us know you are alright.

xoxo

study411

Hi, lemon68, thanks for the encouragement!!! I'm glad to find this website. lots of info & support. thanks again !!!

new2bc

lemon68,

I am glad you had good MRI results. Now, you do not have to worry about the left side everyday. They did not recommend chemo for me either. I start radiation next week. I am scared of radiation and tamoxifen. Will you be taking tamoxifen? What creams will you be using during radiation?

lemon68

new2bc,

MO says tamoxifen after rads, same as you. Glad you dont have to do the chemo either. I dont want to take the tamox. I asked him what can I do or take as an alternative and he said nothing. He wouldnt even discuss it with me. I think that some of the MOs just follow the standard of care and dont beleive anything else works. Maybe they are right, maybe not. I keep looking at the side effects and they are not good. I have been reading and searching for alternatives that are all natural, seems to be things but how do we know they work? Again though how do we know the tamox is working? Either way we are gambling, not so good. How do you feel about it?

I didnt write down the creams but the rads thread on here has them all listed. Seems there are about 3-4 good ones. I think the place you go will also give you something too. I am scared also but dont let the stuff on bad SE scare you on here, remember if they had good results they dont post. Think of all the women that do it and never come online because they are fine. Wish I felt that way about the tamox, I just in my gut dont think its a good idea.

Thanks new2bc

momtotenkids

I finally got a few moments to check on everyone and to welcome to our new sisters. Sorry you are going to join us on this journey but glad you found us. 

Good news lemon68 on the MRI lemon68! TMM60 my hair is past my shoulders and needs to be colored but I am waiting for my appointment on Wednesday to see if I need chemo before I do. If I need chemo I think I will be cutting mine off too. Makes for sense then watching my long hair fall out so thanks for sharing your feeling on it. 

I don't temember if I posted that I got my CT results back with in hours of having it done last Monday. Everything looked fine so that was a relief. I go see my MO RO this week and have a call in for second opinion and hope to see them this week or next. I feel better get two opinions and the 2 MO specializes in BC. 

I had the BRCA gene test done the same time as the oncotype.  I hope they all are back by Wednesday. I am going to call the oncotype lab in the morning and check on it.

I have been having good week but today has been hard. Trying to get caught up on chores but can't stay out of my head long enough to get much done. Hopefully tomorrow will be better.

lemon68

This is a powerful writing, I read it everyday I hope it will help some of you also.

http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html?utm_hp_ref=fb&src=sp&comm_ref=false

let me know what you think. I sent it to my closest friends and their understanding of what is happening was strengthened.

hope everyone is fine this evening.

Much love- Kim

PositiveThnking

Lemon68 that was a great article.  Thank you for sharing!

TMM60

I enjoyed the article as well, thanks for sharing lemon68!

pacools

Good to hear things are moving forward for most of you. Let me say that my doctors will not approve the BRCA testing or the Oncotype. I saw the genetic doctor and because I have a sister, niece, and a another sister who lost her battle with BC that all have the same BRCA II mutation that do not feel it would benefit me because this variant has recently been reclassified as favor polymorphism and not believed to cause BC. As same as you lemon68 the MO do not think there is any thing new to learn from the test because the score will be low according to my profile. So we will be starting rads at the same time. I truly have mixed feeling about these decisions but I have to trust their collective knowledge and advise.  They assured me they are conservative in their decisions and team must agree.

I will have the US standard of care for a full six weeks, we discussed the Canadian standard and they felt for me the traditional standard is recommended. I am going to discuss with the PCP having my ovaries out sooner rather than later. I will have hormoral therapy starting in April but it likely will not be Tamoxifen because I am post menopausal.  Interesting enough the genetic doctor did tell me my blue eyes and fair skin will likely cause my skin to burn faster from the rads. Non of this is fun and mostly scary but it is our lives we are fighting for sisterhood. Positivethinking I will be sending extra (((Hugs))) your way on Thursday, I hope you can tolerate the first dose TMM60 is encouraging. Warrior sister united.

AmyQ

Hello All, I'm also a new inductee, no pun intended, to your soriority of newly diagnosed IDC. Just learned on 2/7 after a routine mammo - thankfully Stage 1 but bilateral mastectomy schedule for this Thursday 2/21 with immediate reconstruction. 1 week later my first oncology appointment hopefully with good news. I have heard breast cancer statistics over the years but now they really mean something and they're frightening. Fortunately I've never had a friend or family member diagnosed so this is all so new and overwhelming, especially all the drastic decisions that have to be made in a fairly short amount of time. Perusing this board has helped a great deal. Thank you for the time and attention you all put into sharing your stories...

ReneeinOH

Welcome AmyQ.  What an initiation this sorority has!  Some of us have to give a breast or two and other undesireable treatments.  Thinking healing thoughts for you and others with upcoming surgery, as well as those recuperating.

I've missed being with you all, and thank goodness I'm on the other side of my conference.  I do want to do something nice for myself before next Monday's surgery.  A pedicure, maybe actually get a good night's sleep? 

Lemon68, I know there are scary side effects from Tamoxifen, but I've also read that some women's experiences are not too bad.  I think we can psych ourselves out so much--we see discussions of various problems.  Yes, they can be real, but doesn't happen to everyone (that severely).  I'll be doing that drug too, but am trying to keep hope that the SE are minimal for me, and root for the drug to do its job--to starve cancer from growing.

TMM60--still doing well with the chemo?  So glad it's started off smoothly for you.  What did you do to pass the time? 

pacools--you are handling things just great! None of this is black and white, and I know it's not been easy for you.  Keep hanging in there!

I look forward to hearing back from and catching up with everyone.We're doing this ladies.  Together.  We're getting through this.

[Deleted User]

My aunt had BC in 1993. She had a mastectomy and got some form of chemo in a shot that she went to the hospital for everyday for a year.

She took tamoxifen for 5 years with no complaints.



Knowing what I know now about BC, I'm surprised she took that, as she was 68 years old. But, maybe that's all they had back then. I don't know when arimidex was developed. That's what they give us old post menopausal gals.



Blessings

Paula

Kimberly1965

Ladies I wanted to say its nice to meet you al even if under these cercumstances. Though since I've had my BMX with tissue expanders on the 7 th of feb I don't feel like I belong in this warrior group. I am miserable and don't really feel I can fight this. The pain is awful. Constant dr appointments still have the stupid drains. Since the cardiac episode in the OR I just feel I'm fighting a loosing battleo

lemon68

Kimberly,

YOU are fighting! Are you they giving you something to control the pain? If not you have got to demand something, not fair to go though this and be in awful pain. I am so sorry. Prayers for you.. You are one of us and you wont lose this battle, do not let it win. I didnt have a BMX but so I cant say I understand but I do understand the rest. If one day I have to do what you did I am going to come to you, right now I am just proud of you. Please be proud of you also.

much love to you- Kim

new2bc

Hi kimberly196,

I am sorry to hear that you are in pain. I also had a BMX about a month ago. Hang in there. This afternoon I was feeling two ropes are pulling on my breast. But now I feel better. Keep taking the pain medicine. You have to stay positive. Hopefully, you have a good family to take care of you while recovering. We are happy to hear from you. Please keep us informed about your condition. 

pacools

Hi Amy we are her to give you support.  Let us know how we can help or if you have any questions. This group has been very willing to share the good the bad and the ugly.

It sounds like Kimberly is having a rough go after her surgery and for that we are sorry.  I know some pain is expected but I am wondering if you should be asking for them to reconsider what they are currently giving you and offer you a change to another drug routine to better manage this. Please don't feel like you don't belong here you certainly need and have your warrior sisters to vent with. We may need a comedy routine to make us laugh soon. A cardiac event during surgery may also be contributing to your low mood and elevated pain.  Start screaming for help, do you have someone who can advocate for you? This may be how they can help.  May today be the start of better days ahead as you recover. (((Group Hug)))

Renee I treated myself to a manicure and pedicure just before surgery.  The polish I choice had something in it that prevented them from getting a good oxigen level before surgery so I had to remove the polish in pre op but only my two index fingers.  The manicure looked a little strange but what the hay! Monday will be here before you know it.

TMM60

Oh Kimberly, I am so sorry for your pain! Agree with the others- call and ask for some better pain control. No need to suffer! Hope you get feeling better really soon. In the meantime, I'm sending warm and strengthening vibes your way!

Renee and pacools, ooo! a mani and a pedi sound so good. Maybe a nice massage with warm oil from Fabio too?

Welcome to all our new warrior sisters, we are glad you found us and hope our stories are helping you down this long and winding road.

My side effects from the chemo last Friday have all been very manageable and I am doing well. I had some constipation from the meds (expected) that was alleviated by taking some Senokot-S. My mouth looks and feels like the floor of a movie theatre (mouth sores and thrush), but we're fixing that with antibiotics and mouth rinses. My energy level is low, but I rest when I feel like it. I get achy and bored from all that sitting around, so I do some light housework.

I took this week off work not knowing what to expect, but I think I will log in and do some work today. When I am tired, I'll stop. Really, I'm pretty happy with how decent I feel, as I know others aren't so fortunate.

momtotenkids

Kimberly I hope you are in less pain today. Hopefully you got something that works a little better. 

Pacools glad chemo is going ok for you. Hope it continues.

I saw my RO today. He was really nice and very imformative. Probably got more info from him then the BS and MO together. My Oncotype test result came in today while I was at the office. Although I will see the MO tomorrow the RO talked to her about my results. my score was 16 which is on the high low side so they side so they recommend no chemo! I was surprised as I expected it to be high for some reason. My ER+ and PR+ are both very high which they take into consideration too. We are still waiting for the genetic test results. I am hoping they will be back by tomorrow when I see the MO. The RO did suggest that if it is positive that I consider bmx because they also found lcis. I need to get a copy of my report  because I don't remember hearing those words before. I thought they said dcis. He said that having lcis ups my chance of having it in the other breast at some point. I am getting a second opinion next Wednesday to make sure I am doing the right thing.

ReneeinOH

Kimberly, you definitely are a warrior.  You've been dealt a tough hand.  I hope you get better pain assistance.  I met with my PS last week and was told expanding the TE too quickly can cause a lot of pain, so maybe talk to your PS about that. 

LongWayHome

Hello Sister Warriors, thank you for all the encouragement. And welcome to all the new sisters! Nothing new for me this week, still anxiously waiting on pathology report from surgery...I so hate waiting! My nephew is constructing me a box for my aggression therapy ( i'm going to smash the hell out of some dishes) should be ready for sunday  

Kimberly, you can do this! Square your shoulders and kick this cancer right in the crotch! And demand the Drugs! I was so high on pain killers the first 3 days I didn't even notice I was petting the cat backwards! Thank god he is declawed!

All you lovely ladies in here..."When you get to the end of your rope, tie a knot and hang on."
Franklin D. Roosevelt

rockermom66

Hello ladies! I think this might be my first post but I've been reading for quite a while now.
I suppose this is a good place for my introductory post.

I found out about my bad boob cells on January 4th. We were keeping an eye on one spot for a while with mammograms every 6 months. I had an ultrasound last year with no results, nothing palpable. Had a stereotactic core biopsy Jan 2nd and there it was. 

My grandmother had bc in the 60's and passed away at 36. My mother just went through it 2 summers ago at age 65. She was stage 4 and had a mastectomy with no reconstruction. She's doing great.
It's absolutely no surprise that I have it also (I'm 46). BRCA is still in the works at the lab but those results won't sway my decision.

I've met with my surgeon and oncologist. All roads were pointing towards lumpectomy but I was 90% decided on getting BMX with reconstruction to put my mind at ease. The MRI found more spots so I'm solidified in my decision, I think my surgeon is relieved but I don't quite know how to read him yet
I didn't see a reason to have more biopsies with that crazy machine even though I sort of enjoyed it. 

I'm in super good spirits and I'm not afraid at all. I'm just worried about not working and the house going to hell while I'm recuperating. My son is 15 and can help but I'm so used to doing everything.. it'll be hard.
I want to be able to lift my arms asap so I will be doing my exercises. I also hope I don't need chemo but if I do I will go in like a bull.

Plastic surgery appt on March 5th. I feel like it's taking forever to get to the surgery date, that's another thing that's bothering me.
We'll get there, at least I have more time to work and save $.

Thanks for reading!

LuvSnow

Haven't posted in a while...had my surgery 7 days ago...this is what I posted on the Feb 2013 surgery board:



-----"Hi ladies,



Had my surgery Wednesday afternoon. Surgery lasted a little over 6 hours. When I came out, all I remember is feeling sick as a dog...they gave me something for nausea, but then my heart rate went to 155+ bpm...that lasted over two hours. I was given heart meds, potassium and magnesium. It was 9pm by the time DH could see me. They put me in an IMC room due to heart issues. I used the restroom as soon as I got to my room. The first 24 hrs I hit the pain pump twice. My chest felt heavy/tight, but in bed I was fine. They let me go the next evening and by the time I got home (2.5 hours traffic) my chest felt like it was on fire and ripping open. Took a Vicodin and felt better!



Day 2 & 3 I took a single Dilaudid throughout the day and a Vicodin before bed. I can get up and around but I have to say I am very uncomfortable. I think it is the expanders. I also have weird creepy crawly/water dripping over me sensations. When pain pills wear off, it is worse. I am trying not to take the pain pills, as all they do in make me tired and loopy. I do have good amount of range with my arms and can wash my hair (showered yesterday), brush my teeth, etc. Getting in and out of bed is hard, but I use my core and am ok...just slow



I have seen my PS work, and so far I am happy. Looks like a smaller smushed version of the former gals. I have incisions in the creases below each breast so I don't think it will be visible in the end. I am praying my nipples do ok. They are darker than normal, one feels a bit scabby.



Oh, I hate drains;) I know they are necessary evil, but I am sure they are adding to my discomfort. I borrowed a fanny back from a friend, and that has been helpful.



My BS said he took 4 nodes and they looked ok, but he won't know for sure until path comes back. He also said he did not even look for my tumor or anything else...he just took it all out and sent it to pathology. Thought that was odd, but I was too loopy to care.



Anyway, I guess I'm doing well. Just feel crappy. I am a high energy/always on the go person, so I hate this. But, I am wiped out and guess I need to listen to my body.



Supposed to have guests today...hopefully I don't fall asleep on them. I think I may have upset a friend, but she txt me last night and asked when I would have results from surgery...then she said "hopefully they won't find anything bad in there"; so I wrote back that I have IDC, which is bad. I will live, but shoot, did she think I did this for fun. Then she wanted to know if I could walk her through all that happened so that I could educate her...I know she means well, but we have not been real close in a long time and so I flat out told her that I would rather NOT talk about it. That is my way of dealing. I talk to my aunt and DH when I feel like it. I don't feel like educating everyone else on what I am going through. Sometimes I feel like some people want to help because it makes THEM feel better about themselves...has nothing to do with helping the patient.



Anyway, I guess I am still loopy...I have rambled enough -----"



UPDATE after that post: I got some path back. Nodes looked clear and tumor was small (.9cm) as expected. Will find out more today when I see BS.



Saw my PS yesterday (2/19). Two drains of the 4 are gone. Nurse kept tugging at 1 until she realized it was stitched in. SMH. My right breast and nipple looks good. They look like boobs, just flatter. The left nipple on the other hand is black and PS said it does not look good. She said she will leave it and see if if falls out on its own. After all this I cried in the hall over a nipple. I was hoping to at least have some semblance of me when all is said and done. I am healthy, eat well, don't smoke, good weight...never had an issue healing...I am bummed this is happening.



I feel crappy, tired, and uncomfortable. With 5 births and a hysterectomy I was up and out a day or so after. I am exhausted with this and chest is so heavy and sore. By the time I get my ass out of bed and shower and do my hair I am ready for a nap. I only take pain pills towards bed...once I can't stand the pulling, itching, burning anymore. My PS says I wait too long, but I hate how out of it the pain meds make me feel.



Oh, and I hate sleeping on my back propped up!



Hope everyone else is doing well.