2013 Survivors!!!
Comments
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chrisrenee is right - where you are you junueabugg???
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Hi ladies been on many other boards many other boards and finally decided to post here on this one.. I guess i came here indeed for some advice because I am nearing the end of chemo then surgery but more imprtanly I have some radiation questions... Surgery route is still up in the air defintely do mastectomy with diep.. just notright away bc of possible rads.. prob mastectomy eith tissue expanders...
but my question right now is more for option to do radiation or not... This all depends on node positivity at time of surgery... I have one more weekly taxols to go.. My question to u all is the same....if there r no positive nodes after chemo and we r getting a mastectomy... R they still going to radiate... If there r still positive,hen rads is a definite
Also, i Was staged clinically at 2 with some lymph node involvement....
I know I had postive node before they tested one that looked funny on MRI I think( don't know for sure how many) chemo but if after, there is nothing In the nodes both my bs and onco think it would b overkill to radiate there if they r doing an ALND as well.... Any thoughts... Hopefully there won't be anything in the nodes come surgery time for me but now I am confused about radiation regardless.. I am young(31) so I would think they would want to b more aggressive... But all docs deem radiation unnecessary unless there is still something in the nodes.. I am so confused and don't know what to do...advice please!
46 and single.. Yes i am younger.. 31 and still scared to death.. Right ow i battle with depression and fear of not gettingto grow old... but thats a whole different forum i guess
But I went for two opinions and they both opted for pre chemo route... I think chemo was a definite with my age,tumor size( about 2.5 cm), grade and node positivity.. ( although they all said node involvement was microscopic. They were surprised that there was involvement cc. However i don't know how they would really know that until surgery) and my tumor being high grade.. They also mentioned five to ten years on tamoxifen( switched to ten after study came out)) and then move onto AI for another five to ten.. So basically 20 to 60 years of hormonal medicine ..l haha will take it if it will control cancer... As I am highly er/pr postive...
Any feedback will be greatly appreciated on any subject that I wrote.. Mostly radiation thoughts.. However I am a scared little girl( young woman actually) who is sick of burdening my family (parents)with my fears about the future and this disease... As doctors seem to be so positive about my prognosis. So is everyone . I don't see why I can't be either...
P.s.. I am way too into googling and it has poisoned my brain as to a lot of factors, studies, prognosis and stats about my cancer and age point to not such a good outcome... I am always looking for stories on this site that prove otherwise..that's all for listening.. I know I rambled....would love some feedback0 -
juneau... come out, come out, wherever you are? Likely being a sponsor to someone in need or living it up, or just too hungover from her buffday celebrations
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Shari- welcome! One of our rad girls will definitely have some answers or advice for you.
Here's my advice... Stop googling it only makes it scarier. Being 35 I understand where you are coming from. Your family does not see it as a burden, trust me. They are just as scared as you are and want answers too. Parents are there for you to lean on and help you when you need help. I would not have gotten through my last 9 mos without mine. Tell your parents how scared you are, they are probably thinking you have this undercontrol when all you want to do is breakdown. But you can always come here to us as well.0 -
Shari, my heart goes out to you! Bc is scary enough for us older ladies, and you are only 31 years old - so young to have to deal with this. Your drs are right, at your stage you have a very positive prognosis. These days bc is treated more as a chronic disease thanks to the good treatments available, not the killer it was decades ago. Try to stop googling. The info/stats there is mostly outdated and unreliable, and will just upset you unnecessarily. About radiation all I can say is that if you have a positive node(s), you will probably get radiation. It sounds much scarier that it is, and is the easiest of all the treatments. You lie still on a bed for a few minutes while the machine revolves around you. You feel absolutely nothing, and it does not hurt at all. Best wishes and big hugs to you!
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Thanks for writing back.. as much as i hate to say it,, i am glad to see some one in age so i dont feel as alone ( i do go on young women forum,s a lot too) my parents, they definitely know how scared I am and want me to b more at peace with everything...yet maybe when I am a little further out from treatment I will b calmer... And when I know more about the true pathology of the cancer..... My patens r my biggest support system yet I feel bc doctors r so postive, they are too.. Yes they know it sucks and would switch situations In a heartbeat and know my pain buti think more importantly at the moment they r just worried bout my mental well being more than the cancer right now I think...
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Two more pages to go to catch up. Need to go to sleep, but have to say to Scorchy....
YAY! That's fucking awesome!!! 🎉👯👯👯👯👯🎉0 -
I know googling is bad.. It's like an addiction.. I feel I want to know everything. Studies, success stories, not so successful stories. But the more I know, the more scared I get.. It's a vicious cycle....
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Hey Juneau!! Were your ears burning??? So tell us all about your birthday!! Did you eat cake for all of us? You can whisper your answer so Scottie doesn't hear. Lol
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Shari, I did the same in the beginning, and scared myself out of my mind. Then stopped doing it, and it became much better. You cannot really believe much of what you read there. That info is based on older studies. In the last ten years tremendous progress has been made, and lots of research has been done on bc. So do yourself a favour, and decide to do something else instead of googling. As soon as you have a definite treatment plan in place, and things are beginning to move forward, you will feel much better. You are the most important player on your team, and must take charge of the situation. Treat it as a project that you have to complete, and do it step by step, one day at a time. This is a temporary thing, and it will pass. There is an end to it, and your life will be normal again. Keep busy, keep your sense of humour, and do enjoyable things just as you would have normally. You can do it.
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Scorchy,
Awesome news! I actually think about you at times to remain encouraged throughout my journey. Keep inspiring throughout yours!0 -
Scorchy...HAPPY..HAPPY..HAPPY
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46and single, your Dr. is not treating you with any respect in my opinion. You have to be able to trust this person and feel comfortable with your ability to communicate!
Shari, sounds like you will know more about pathology and need for radiation after surgery. I had lumpectomy and had radiation which is a given with lupmectomy. In any case, don't fear radiation treatments. The repetition of going every day gets old, the treatments themselves are fast not painful at all. Take one day at a time, and know you can come here anytime!!
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{{SHARI}}. Liefie is right. One of the books I read even had that at the end of it "leaps and bounds have been made in the way this disease is treated. The outcomes are progressively more positive. As this book goes to press, this book will already have been outdated." I think at that point I gave up researching and started putting more faith in my Drs. I wish for 46andsingle to find at least one like I have!!!
I, too, was confused about the need for rads and dead set against it. But in the end my trust in my team and common sense won over. (Common sense for my treatment, not anyone else's. It's such an individual plan we all have) I think once you get your post chemo scans or imaging and surgery you will feel more confidant in any decision you make. If you trust your team, let them guide you. But ultimately it's your decision.
I have a question, anyone have any ideas on what to do to relieve peripheral neuropathy? Not a treatment but like when its happening? I was up most of the night AGAIN with the numbness and pain. I never understood that before all this, how can something be numb and hurt at the same time?!?!
Hope everyone a great Friday and stays warm. It's a balmy -20F-6C here BRRRRR!!!0 -
46 and single:
A second opinion is needed. If a doctor took away my notepad I think I'd have a fit (though I do understand that in the moment you're so taken aback that you don't know what to do).
When I was first diagnosed I was satsfied with my doctors and all. Then my boss kept asking me when I was getting a second opinion. "I think I'm okay," I said. And he asked me again. And then I looked at my situation and thought that due diligence alone would demand it.
And once I got that second opinion I moved on from that first batch of physicians. When I met with the the second oncologist I had my note pad ready to go and he said, "I'm going to frame my opinion in two parts. For the first part you will not need your notepad. When we get the the second part I'll let you know when to start writing."
The prospect of looking for a new physician was daunting, but I did it. And I never looked back.
When my oncologist moved to a new hospital and new position, I was assigned a new oncologist. My first meeting with her left me so sour. Once I pulled myself together I demanded a new physician. And, again, I'm glad I did it and I'll never look back.
You are not being respected. You are the one in charge here.
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Scorchy- Absofuckinglutely wonderful news!
Shari- I wanted to read everything I could about BC as well, but I would start scaring myself as well so I decided to limit myself to reputible websites and if I didn't recognize the website name then I didn't go there. Like this one is great, WebMD is good, Susan G Komen is good and a few others but when you start seeing things from yahoo answers or something like that just ignore it because you wind up scaring yourself to death. Even some of these boards can scare the crap out of you. I know before I started rads I read on some of the boards about what some of these women were going through and it scared the shit out of me. It turned out that rads wasn't too bad. It wasn't a picnic in the park either, but it wasn't too bad.
Joanne-I've heard really good things about Curves. You can do this!
46andsingle- You've gotten some really good advice here already. There's not much I can add other than don't be afraid of chemo. Yeah, losing your hair sucks big time, but it's temporary. And I worked the entire time I was going through chemo. I think I took one day off during each treatment to get my treatment because it was like an all day kind of thing, but that was it. I timed it so that my down days fell on the weekend...that's usually the third day after treatment.
Chrisrenee- I don't think we ever truly get over this. And I think it's wise if you decide to talk to a therapist/psychiatrist about it. I've thought about doing that myself.
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hi ladies... sorry I haven't been around. I'm going through some shit and haven't been ready to take the time to try to write it all out. After an hour of reading I can't comment on all (I will say welcome to those that have recently decided to join our family... and we are a family; sorry you too are here, but boy are you in the right place if you want unconditional love, support and a good laugh every now and again) - you all pretty much have taken care of eachother in my absence and let's face it... my opionion isn't warranted in all situations. BUT I have to address 46andsingle… FUCK THAT DOCTOR.... DO NOT UNDER ANY CIRCUMSTANCES GO BACK TO HIM. Screw and second opinion... a doctor should treat the ENTIRE patient, especially when treating someone with a cancer diagnosis. Like so many have said, get a second opinion; but I would take it one step further (like Scorchy just so wisely said) - just get a second doctor. Chrisrenee said everything I was thinking is regards to oncotyping and pathology. You will find out a lot more after surgery and might still find that chemo is a suggested course of action (as was my case); however like some other here I did not required radiation due to the size of my mass and the location. The point is, every cancer is different; sort of like a finger print. You can't make a decision with the expectation that IF you have a MX then you won't need chemo or rads. unfortunately it just doesn't work that way. Someone wise posted here recently - don't go there, before you get there... or as we say in my 12 step program - stay with your feet. Just find a doctor who respects you, LISTENS to you, and takes the time to explain things to you.
ok - here's where I'm at. Chrisrenee I'm with you. Turns out Im really a hot mess and it's just been getting worse. I'm festering in self loathing about my body. I look in the mirror and I start at my breast and my frankenboob (I am realizing this is part of the problem - I haven't accepted my new breast as my own) and work my way down to my pregnant looking belly and fat things - and I hate me NEW self. The (what I saw as) young, sexy and confindent woman is gone. I'm ANGRY at my cancer, I'm anygry at myself for getting cancer, I'm angry at my higher power for... well I don't know what; and ladies, anger is NOT a go to emotion for me - I don't know what to do with it and I'm letting my anger of what's going on on the outside of me (which I guess is just covering up my sadness and loss) POISON everything on the inside! As a result I AM LOSING MY FUCKING MIND!
My husband and I went out for my birthday. I skipped the apps and the salad. I had a main course and then a dessert. I asked before he ordered his chocolate truffle cake if I could share it with him, becuase I also wanted the creme brule - but thought 5-6 bites of chocolate on my birthday (right Scottiee?) - he said ok. Then when I was done with mine and had already had 3 bites of his I wanted a couple more... he said he wanted what was left for lunch the next day and called me a piggy. Well I was SO UPSET! I said nothing - paid and when we got in the car he apologize - but said he just didn't want to watch me hose through two desserts after all the stressing I've been doing over my weight. (Mind yuou my husband doesn't have a malicious/mean bone in his body and I KNOW he meant it more jokingly. My part is that I should have just ordered the chocolate cake and not have expected to "have my cake and eat it too" - even if it WAS my birthday!).
So anyway- we pull into the driveway and he tells me that it's just that all I ever talk about any more is calories this and that - I'm totally obsessed with what I eat and the scale... and he's totally right.
So we go inside - he goes outside to smoke (wish he'd quit) and i take out the laundry that dried whilst we were gone and begin to fold it ...and proceed to have a complete breakdown in the bedroom. He comes in and I just verbally vomitt everything I didn't want to tell him - becuase it's not his fault and he can't fix it. How he's been able to go on since I finished tx and I'm still stuck in my cancer. How he manages to just eat whatever he wants and I struggle with portion control. How I hate my new body and haven't felt sexy once since the moment they cut into my on June 26th 2012.
He held me, I cried. Happy Fucking Birthday to me.... Point is; I have to DO SOMETHING to move forward; I just wish I fucking KNEW what IT IS that I should DO! My therapist last night said I should start with forgiving myself for having cancer. *sigh* She's right.... That if someone was talking to me like I was a piece of shit, and angry at me all the time - would I do what they wanted.... so why should I expect my body to respond positivly when all I say to it is negative crap (you know that whole "the Secret" thing. You get back what you put out.) That I'm getting angry becuase I feel out of control - that I keep exercising and counting calories and I STILL CAN'T CONTROL THE OUTCOME! AH HA!!! That's it isn't it! I'm a addict - I have learned that when I get into the outcome business I LOSE MY FUCKING MIND! So what do I do - I keep trying the same thing and I'm hoping for a different result and getting angry because... and here it is... I'm not getting it IN MY TIME! I WANT WHAT I WANT, AND I WANT IT NOW! Welcome to the world of a junkie!
So anyway, that was my birthday. I still have no idea HOW to go about forgiving and loving myself again. I'm not taking care of myself. On the OUTSIDE I AM, but on the inside I'm flogging myself at every opportunity. That's not how I want to live. Suggestions? Experience, Strength and Hope? Anyone????
P.S. Aruba; THANK YOU FOR POSTING THE HAPPY FEET FOR SCORCHY... I LOVE THEM TOO. They ALWAYS MAKE ME SMILE. and Believe - thank you for the Birthday Poodle. and EVERYONE ELSE: THANK YOU FOR THE BIRTHDAY LOVE AND WELL WISHES!
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Scorchy,
Wonderful news rejoice!!!
Sheryl
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46and single,
I too am sorry you had to join us but I promise this board will be the best thing for you as it has been for us. I agree with everyone else. Who does this asshole think he is. You have enough to worry about without your doctor not being supportive. Remember you hired him now it is time to fire him and go somewhere else. Keep us informed please and we will offer all the compassion, empathy, love and support that we can.
Hugs, and hang tough,
Sheryl
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46andsingle - As someone who works in the health care field, there is one more thing I believe you should do. Your physician has been profoundly disrespectful to you and has not acted in a professional manner. I suggest you write a careful, thoughtful note to his superior (this is either a department chair if this is an academic medical center or the head of his division) and also copy the chief medical officer of the hospital and the president. You may also decide to contact the State Board that licenses physicians. This type of behavior (especially the taking away your questions) cannot be allowed to continue.
On another note - if you decide to proceed with chemo either before or after surgery, consider checking out the Cold Cap Users discussion. There are options for keeping your hair during chemo.
Good luck!
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juneau - first of all, hugs. Second of all - the minute i have a free minute, i'll be ringing you so i can say all that is spinning in my head in response to your note here (brave lady to share so deeply!). But i do have time to say the one thing you need to remember. Look at this thread. 79 pages of love and support for tons of people. You started this sister. Look what you built for all of us - and for yourself! You have a lot to give. And you've grown a lot in the past year. So start giving yourself a bit more credit and let you love yourself! We all love you!!!
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Rachel.... You made me cry. I love you guys too... Yes, time to put the bat down; if I could only loosen my grip....
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Juneaubugg, I gave you my thoughts on this a few pages ago. So sorry that you are struggling so hard, and hopefully you will find the strength to begin to take the focus away from yourself. One tends to make a huge deal out of every little insignificant thing when you feel like this, the balance gets totally out of whack, and you spin into this craziness. A very good weekend to you, and hope you find some peace. I agree 100% with what Ramols said - you are a STAR in our eyes, and you better believe it! (((((BIG HUGS!!!))))
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Thanks everybody for taking the time to write me... I know I am still figuring out my treatment after chemo and once I know for sure certain routes I am going to take I will feel better.. A little...
I am just scared by reading things some that are not outdated( as recent as update in 2012 San Antonio breast cancer symposium)that young women have worse prognosis, more aggressive cancers, and overall different tumor biology.. Are we all doomed bc we r young... Does that mean I don't have a chance of growing into an old women... It's not fair and it haunts my thoughts.0 -
Juneau.... I'm sitting here with tears in my eyes. My heart goes out to you, like ramols said YOU started this!! YOU GAVE ME A PLACE TO COME TO FEEL NORMAL!! Honestly, this thread has helped me more than any of my other support networks and you reached out to start it, to bring a bunch of strangers together, to laugh, cry, share, celebrate and most of all find love, support, acceptance of ourselves, and friendships!!
{{{JUNEAU}}}
However I can identify with some of your feelings. Although I know the surgery saved my life, and as much as it is a great job, this thing on my chest is not mine. It doesn't look like mine, feel like mine. Hell it doesn't feel period!!! The diep gave me a tummy tuck that I didn't need and now I'm scarred from hip to hip and numb from rib cage to pubis. I hate it. I hate that I (or anyone else) had to go thru this, I hate that I can't run my fingers thru my hair and I hate that my new normal will included Drs so frequently in my life. BUT and here is the thing, I'm grateful for the experience. I know that sounds so freaking stupid but seriously, I've met so many wonderful people, I've been shown the power of compassion and love. I've realized the true meaning of family and friendship. My going thru this has brought people in my family together that hadn't spoken in years, I've found out people I thought were friends weren't and people I never thought of as more than an acquaintance mean more to me and think more of me than I could have imagined. I'm not a religious person, but truly I think we aren't dealt more than we can handle. We may bend and bow but breaking is not an option. I watched both my parents battle cancer, chemo and radiation and I can say it is easier being the patient than watching someone you love go thru it. I don't know if I could handle watching someone else I love go thru it. I know I hate this, but I also know I'm stronger that this fucking beast!! And ya know what? So are you!!! I believe that, look at how many people here already are better because of you!!
Your husband sounds like a gem, and I'm sure he will tell you that you are beautiful. Sexy. Strong.
It's only been 8 months, your body has not healed completely and your emotions are still fragile, not mention likely hormones running amok. If you could just see yourself the way the rest of the world sees you, you would realize how amazing you are!!!!0 -
juneau, just wrote on my chemo site about my crazy emotions including extreme moments of anger and total frustration. I sometimes wonder if I was like this before and I sure hope not! It is hard to differentiate now on what the "real" me is. My DH takes the brunt of my frustrations and I often push him away. What a crazy life with BC! I hope we can get to the point where we are not flogging ourselves anymore for things out of our control and as liefie says, the blance gets totally out of whack. No shit!
Thank goodness again for BCO because so often I feel alone with this crazy burden.
juneau, I hope that your next birthday has you in a totally different head space.
Marian0 -
Juneau, I want to hug you ....
I cannot say I understand you but I have some of the same feelings ..... my point with joining Curves is because I can do it. If I went to a gym or a trainer I would feel beat up ... I do a good enough job of that myself. I want something I can do at my pace and build up ..... not something I am going to dread everyday and then quit.
..... I know you don't want to hear it ... but sexy is within. You have to try and bring back the sexy in your mind .... You are a beautiful girl (woman) and you have spunk and sass. That in itself is sexy.
I was told one time to write a letter to someone about my feelings ... why was I angry, hurt .... I know it isn't the same but what if you put this all of your feelings into a letter -- explain what is wrong. Sometimes getting it out just like you did above is helpful.
Be kind to yourself .... do NOT beat yourself up. We are our worse enemies. Remind yourself of how wonderful you are.
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Juneau,
I just started commenting on this forum.. But u r a strong beautiful inspiration to me and I know that feeling you get and it's hard to push away.. But like people havetoldme.. Visit those emotions and then push them away.. Easier said than done.. But we all have to be strong...0 -
Damn shianne29:: I totally forgot that feeling. I was in the place... that gratitude. My aunt who hadn't spoken to me since my wedding is now speaking to me; in fact we have a real realationship again. I have been surrounded by love and support... thanks for reminding me.
Marian; that's why I put it out there right, because I knew someone here would be able to identify with some of it. Yes - we need to find our balance... maybe if we put the bat down and free up a hand....
Joanne; thank you. You are totally right. It does come from within. I think I do sexy inside and then I look in the mirror and it's like the spell lis broken. Something to work on.
Shari: thanks, and welcome. I have to say for me I don't pushaway any emtions. That's why I used drugs ande alcohol for a go part of my life...too much pushing away. But I do agree; feel them, but don't wallow/self pity. It's not very productive. ALso - just have to say... YOU are not doomed becuase of some studies you should never have read.
Stay away for Dr. Google. And someone here said (maybe Marian??) the those percentages don't matter anyway. Those numbers don't relate to me personally as I am either 100% or 100% dead. I also dont' think age matters, other then we have moree years to live out the rest of our days as survivors. You have good pathology in terms of treatment, so just take it one step at a time. The journey has just begun... You'll be ok and have a long, prosperus rewarding life... and BTW at some point in April I am going to head into the city to see Scorchy (and hopefully Ramols) perhaps you'd like to join us?? 0 -
Hey Juneau, if you know you do sexy on the inside, you must feel it!!! If looking in the mirror breaks the spell, I know this is going to be stupid but how about covering your mirrors, even for a couple days? Just to let that sexy feeling sink in!!
Ok now EVERYONE!!!! "I'm sexy and I know it!" Did you sing it in the M&M's voice? Lol0
