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Posted 3/23/2008 3:49 AM (GMT 0)
hi;

I was dx. with breast cancer about 3 weeks ago and was waiting for genetic testing to comeback  to determine the course of treatment I  may have to have.  Good news is that it was negative which was a shock to all since my mother had  bi-lateral breast cancer and had ALL the genetic markers. 

However... everyone is SOOOOOO happy and excited and congratualitng me on the ' GOOD NEWS." 

YEs.. it is great I don;t HAVE TO have a double mastectomy but all have seem to forgot i HAVE breast cancer.

I feel guilty now being upset over this.  All I will have to do is a lumpecotmy and radiation..  no biggie!

I am still freaked that i EVEN HAVE breast cancer but it iseems no one seems to think that is important.  Some good news is great and YES,..I am HAPPY that the test came back negative but...should I then just forget I have cancer????

 

Posted 3/23/2008 4:10 AM (GMT 0)
Hi, Prof, welcome to the board.

Lumpectomy, radiation -- no biggie? Wrong! It is a big deal because it is happening to you and it is a major interruption in your life. It is imporantant because it is your body. It is OK to feel upset, angry, frustrated and unhappy. Feeling guilty that your situation is not worse is part of the emotional rollercoaster that cancer puts you on. Yes, you have cancer, and that's awful. No, you won't need a double mastectomy, and that's great. But, you have cancer and that's awful. You see what I mean? It is an up and down set of emotions. I remember being in tears one minute and laughing the next when I was first diagnosed.

Please know that these conflicting emotions are normal. You are normal. If you are like the other women I know who have had cancer, you will never forget. It is part of who you are now, part of the new normal. Please know that you are not alone. The women here will be by your side with compassion, care and understanding. I know many of them personally and they are a great group. We will do what we can through cyberspace to help you through this. Sorry I am not more helpful at 11 p.m. but I could not go to bed without trying to give you some good words. Hope I helped. Rejoice, tomorrow is Easter. Hugs, Lauri (dxed 04/11/96)

Posted 3/23/2008 6:34 PM (GMT 0)
Hi there-
You are right smack in the middle of an emotional roller coaster, and it may take a little more time before the ups and downs are a little less....and even more time to be on even tracks again. And you know what? you are NORMAL. I think all of us can agree that there is just so much going on right now, that sometimes you may not know which end is up. And please don't allow guilt to creep into the mix..there is too much else to think about and process. Yes, you got great news about not having known genetic markers (remember this field is in its infancy, and they can only test us for what they know is out there. My guess is they will discover BRCA 3, 4, etc in the coming years). You crossed one hurdle but as Lauri said, you now have to refocus on the major interruption....and don't feel like you need to explain or rationalize to anyone.

People on the other side will think they are being helpful when they offer words of advice (my favorite one before chemo was "don't worry, your hair will grow back." True, but what about the horror of facing it fall out?) They think they are trying to get you to just see the good side...hooray for a negative marker...but they don't get it....we do though. I think that those around us when we go through this just frankly don't know what to say, they mean well, but unless they walked in our shoes, it is hard to really get it. You may try sticking with those that only help your emotional state right now.... or try just smiling and thanking them for the "advice" and let it roll off....or try to educate them about how it REALLY is....or you may find another way to cope.

Allow yourself to know that your feelings are normal, whatever they are...and you may have good and bad days for a long time, but they will get easier and easier as time goes on.

Hang in there!
Lori
Posted 3/23/2008 6:56 PM (GMT 0)
THANK YOU THANK YOU!!!!! I had begun to just think I was making more of this that it is. people are SO GLAD that my markers are negative which means NO double mastectomy ( I am very glad too!) but they are still forgetting that I have cancer. ALL good news.. that is what I have heard the last 2 days.. let's celebrate! I still want to cry but feel like an idiot since "all good news!"

Still waiting for the second set of markers to come back and YEs..I know there is a gene I have somewhere but hasn;t been found. I also have crohns disease ( lucky me) and when i was tested for those markers... inclonclusive! MY luck.

But. thanks for letting me sound off.. feel weird pretending nothing is wrong since the world around me has been obsessed with the good part of this.

prof
Posted 3/24/2008 7:39 PM (GMT 0)
DO NOT, I repeat DO NOT try pretending nothing is wrong.  That's invalidating to you, especially when others get the cue from you that that's the way to act, then they invalidate you and you're right back where you started.  You need to be good to yourself and let others help.  Also, while doing yourself some good, please watch the spending of money.  I overspent when diagnosed, and lo and behold, I lived and was in debt! 

 

There are lots of organizations that are there to make you feel special too, you know.  You can get make up, learn fashion advice (ACS)from experts, and even learn how to fly fish (castingforrecovery.com).  all free! 

 

anyway, don't hesitate to ask for help.  People who love you want you to feel good and probably want to help.  They need to know you do, though.  Don't look to much like you've got this nipped (forgive the pun!) 

Posted 3/25/2008 6:36 PM (GMT 0)

Hi Prof. I understand totally how you feel. Regardless of the good news, which is GREAT, you still have breast cancer and THAT is very scary and surreal. I remember feeling like I was "dreaming" and waiting to wake up. I did not think I was ever going to be able to stop thinking about it. People around me just didn't get it. They kept saying things like "you need to think positive", or "I have a really good feeling about this." Well, maybe so, but I was STILL upset and scared. I still needed someone to talk to about my fears and all. My hubby was scared too, and I tried to "sheild" him from some of this. I regret that, although I know he was scared, now sometimes I think he should have had to see it all. I think he would have understood more if he did.

Be honest about your feelings. If they don't get it, that is understandable, but do not try to hide your feelings. It is not fair to you, and you are the one with cancer. This is a great place to talk, cry, etc. We will be there for you all the way. Keep us informed,ok? We really do care and we really do understand your feelings.

HUGS, Gail

Posted 3/25/2008 6:49 PM (GMT 0)
Again.. thanks! You are right, I have tried to shield family and friends from how I really feel. I have made light of the cancer and keep saying that because the other tests were Ok. that the rest is a "piece of cake." Problem is... this weekend i snapped at everyone and I figured out it was becasue I was so ANGRY at having cancer and feeling like it was no biggie. SO.... now I will forge on but allow myslef to grieve.
Just got my date for surgery. The adventrue begins!
prof
Posted 3/25/2008 7:14 PM (GMT 0)
i dont have cancer my sister does but i do have crohns i got on this site to get info for my sister, because she doesnt have a computer my sister came down for easter she is gonna be startin chemo in the next few days while she was here i showed her this site she read alot of the womens post on here. she found it very helpful as i think you will too ,dont give up hope. when you get told you have something bad wrong with you it is normal to have a wide range of emotions when i first found out i had crohns i had never heard of it before i couldnt find any info at the time i didnt have a computer so i was so scared i didnt know what to do when we got our computer my daughter found this site ive been gettin on here every since then it has helped me so much try to find as much info as you can because i have found doctors will listen to you more if you are better informed about your illness this will be my sisters third time with cancer her first time was breast cancer god has brought her along way when i first posted on here someone told me about a web site breastcancer.org it has been very helpful i have been on there just about every day there are alot of new drugs for cancer now please dont give up hope i wish you all the best i know god does not give us more than we can handle even if we think we cant handle it god is always with us so keep postin here cause there is alot of great ladies to help you deal with this
sasha1
Posted 3/25/2008 8:28 PM (GMT 0)
Sasha... i won't give up hope. But..I also have crohns. So dealing with ALL the effects of the crohns AND breast cancer really just was a bit too much! i spend do much time being sick yet NOT letting it effect my family... You of all can understand.
I found this site via the crohns site on healing well. I have met many individuals there who have been my support for years.
Seems the women here are just as wonderful! Prof
Posted 3/25/2008 10:03 PM (GMT 0)
prof thats how i found this site to and i do understand i take care of my dad and right now my abcesses are flared but i still have to bath him and give his meds the whole routine i have family that live close by but they dont help much. my crohns keeps me sick most of the time. you need to let your family know how you feel i used to tell my family i was fine even though i felt like i was dyin now i just tell them what i think. my sister told me shes not worring about her hair fallin out because of chemo i know she is just saying this to keep me from worring i told her i know it will bother her and she will cry, because i have lost all my teeth from my crohns everytime i would loose one i would cry no dentist will touch me because of my fitulas now i dont let it bother me. i know all the effects of both diseases is enough to make you have a breakdown, why dont you go do something special for yourself something that makes you happy. i have seen some other women on here that have both cancer and crohns i wonder if it is connected somehow.
sasha
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