Feeling like I am going to totally lose it!!

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in High Risk for Breast Cancer

I am scheduled for open biopsy surgery on Friday June 26.  I have ALH right now, based on a stereotactic biopsy done in March.  This waiting is really starting to wear me down and I find myself crying all the time.  I just can't wait to have the surgery over, so they can see if there is something else lurking there, or if it ends up just being the ALH. 

My family doctor just informed me, she found something on my pap test as well, so now am also going for a cervical biopsy on Thursday July 2.  Originally this appoint was going to be on August 5, so I called the booking clerk and basically begged to have it moved up.  I couldn't imagine having to wait another 6 weeks to have the 2nd biopsy done.Luckily for me, the clerk had breast cancer 11 years ago, and was very sympathetic and moved it up.  I explained to her that I am just feeling doomed right now and worried cancer is just lurking in not just the one area, in the breast, but also on my cervix. What are the chances of beating this twice? 

As I learn more and more about ALH, I realize that although there is not breast cancer in my immediate family I do have other risk factors ie starting menstrating at an early age 10, and having my first child at 30.  I am 46 with a 16 year old and an 8 year old, who I have not told anything at this point.  So I am trying to keep the happy face on, no need to worry them until and unless I do end up getting bad results. My surgery ends up being their first day of summer holidays.  What a way to start the summer? 

 I also find some people can say the strangest things. ie "Your Lucky, it will be caught early". Funny I don't feel very lucky. OR None of us know what the future holds, "You could get hit by a car tomorrow" They just don't understand how stressful this is.  The waiting is torture!!!!!!!!

Sorry for babbling, but it seems like this wonderful group is the only people that really understand.  Bless you and praying for all of you.  Thank goodness for this forum.

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Comments

  • angelsamongus
    angelsamongus Member Posts: 2
    edited June 2009

    Hi, I am very new to this site, and I don't have cancer, but my mum had a lumpectomy 14 months ago. She has been given the all clear, but now they have found a blood clot where the scar tissue is. I think this is normal, have you heard of this? I understand how it feels to wait and wait for results to come back, as she's been dealing with this for almost 2 yrs now. I guess it's just taking one day at a time, and keep breathing. Sometimes, that's all we can do, and be thankful for every breath! Take care.

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited June 2009

    You know what I am starting to learn.. it's ok if you are "feeling like I am going to totally lose it" and as a matter of fact - lose it!  If you need to get in your car and scream and yell - pull over to the side of the road turn the radio up and scream and yell your guts out.. If that gets you through another moment another day then go ahead - lose the social skills we were taught as a kid and allow yourself to lose it - then when you are warn out just sit there for a moment and feel the freedom!  It's real and it is peaceful and it's ok to go get it!  Forget the deep breathing although that certainly serves a purpose and I used it ever day - but just for a moment allow yourself to let go and afterwards you will know it was OK and nothing broke and you didn't hurt anyone..  Then get on with what you have to do next - until the next time when you "lose it".

    This is just plain hard!  And there are no skills we have learned in our daily lives to deal with the underlying feelings that come with the dx and follow up treatment.. You will immediately say "I can't do that"  especially since your screen name is "formykids" you will think that will harm them, but I promise you, as long as they are not in that car with you, it will help your kids because mom will get through this better.  The social graces are for the world that makes sense -cancer just doesn't make any sense..  Have a good scream or cry and then get up "foryourkids" and get on with what is next on the list..  I'll be thinking of you - take good care!  Deirdre

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  • cleomoon
    cleomoon Member Posts: 443
    edited June 2009

    I understand....Hang on...((HUGS))

    Had a stereo in April that showed ALH and had an open excision June 5th. Surgery was not bad at all. Healing is taking a bit longer than from the stereo. I did get an LCIS diagnosis after excisional and I too am on the Emotional Roller Coaster. I strongly support "losing it." I need to lose it more often. Holding it inside is doing me in physically.

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  • kajhope
    kajhope Member Posts: 7
    edited June 2009

    Hi there,  I also too well understand what you are going through.  The unknown and waiting is truly the hardest part.  But you will get through this.  Things do get better, just remember to take care of yourself.  Also maybe consider talking with your children.  They probably know that something is going on, just not what. Sometimes that may be more stressful for them.  I also did not share with my kids right away and once I did they really seemed to breathe a sigh of relief. (I just gave them a simple modified version)  But that may not work for everybody.  Hang in there. 

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  • ready2xcept
    ready2xcept Member Posts: 3
    edited June 2009

    I am new to this site but thankful its here!  I am scheduled to have a lumpectomy on Monday 06/22/09 and feel confident it's not going to be good news.  I feel I am ready to deal with that fact, however, I don't know how to tell my kids either.  I have decided to share this issue with my oldest and wil tell my other two when I feel the time is right. I have been using websites such as this one to educate myself, but the information I seek the most I cant seem to find.  Before any of you were diagnosed did your doctors order blood tests for "tumor markers"?  My surgeon did and the only information I can find on these tests (CA-29-27 and CEA) is that they are run for those who have already been diagnosed with bc.  This is the last piece of information I'd like to have before I go into surgery so if anyone can help I'd greatly appreciate it!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Thanks for the support ladies.  I think I just needed to hear that yes it is ok to be scared, and that I am.  I did tell my kids that I am having a "little day surgery".  Interesting that my 16 year old son had picked up on something, and asked if they are checking for cancer.  I was shocked that he even asked this.  I really downplayed the whole thing and they both seemed ok, although deep down inside I am so scared. I picked up all the paperwork on Friday.  They are sending me for an ultrasound on Tuesday, and then a mammogram for the wire localization the morning of surgery. I am wondering why would they be doing the ultrasound? To see if there is something else there now?

    Good Luck ready2xcept tomorrow with your surgery, I hope everything goes well and you get good results.  Let us know how it goes.  I have not been told to have this bloodwork for tumor markers for my lumpectomy on Friday, but I go for a pre op appt with my Dr tomorrow, so maybe she will ask for it then.

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  • ktym
    ktym Member Posts: 2,637
    edited June 2009

    formykids: the waiting is torture, so sorry you're going through this. Hugs to you and let us know how things turn out. 

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  • apple
    apple Member Posts: 7,799
    edited June 2009

    i am just about losing it too right now.. shudder.. some things are popping up.

    a friend sent me this kid freaking out on a video cam.. it's about how i feel - best of luck to you..

    http://www.youtube.com/watch?v=YersIyzsOpc

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  • Crystalady
    Crystalady Member Posts: 133
    edited June 2009

    It's OK to feel the way you do and in fact I would think it strange if you didn't.

    I've been through this 3 times now and it never gets any easier. This last time I did get something from my doctor to calm me down and it helped a bit.

    Time and knowledge are the things that seems to  put things into perspective. Forums like this one will give you support and friendship from people who REALLY know what you are going through.

    The other thing is that once you get into treatment you will at least feel like you are doing something Positive. There's that word that we all get so sick of hearing.

    Good Luck

    Sandra

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  • up2myoxters
    up2myoxters Member Posts: 4
    edited June 2009

    I have just been diagnosed and the wait to see the oncologist has been very hard. I just want to get the chemo started and then the surgery - double mastecomy. It feels like a clock is ticking and the anxiety of waiting makes you want to scream.

    Prayers and hugs for you and your family,

    Sandra J

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    We all know how you feel - we are there or have been there. What helped me was to put my faith in God. On another note, ask the dr. when you have the cervical biopsy to numb you first. My aunt had one of those done and it was painful. I don't want to scare you I just want you to be informed.

    Sending prayers

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    uptomyoxters, so sorry to hear about your diagnosis.  I hope and pray they will show some compassion to you and not make you wait too long to get things started, that would be torture.

    I had an ultrasound today and the whole time I watched the screen to see if I could see and/or make anything out.  But I really don't have a clue what to look for, so it didn't help much.  Neither did the technician.  I tried to get her to tell me something, anything and all I could get was she just takes the pictures and it is the radiologists who reads it.  That just makes me think, if she could have told me something good, or even hinted at it, she would have.  I do realize, it wouldn't matter what she said because it is the lumpectomy that's going to tell the story.  I just have to wait until Friday.

    Thanks again to everyone for your kind words of support.  It really does help. Everybody here really does know how difficult this whole process is.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    formykids-- the  stats say something more is found in 15 to 30% of the cases; but that means that in 70 to 85% of the time, nothing more serious is found.  Hang onto those numbers--they're huge!!!!

    Will be thinking of you on Friday--praying all goes well and that you get good benign results soon.

    Anne

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Thanks awb. 

    You are like this angel who always seems to have the comforting statistics.  I hope I fall into that 70 to 85% category. I am so glad tomorrow is almost here and I am so looking forward to finally doing this.

    Cathy 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    For those of you who have looked at the name of this thread and felt that same way I do, I just wanted to let you know that I had the "wire localized lumpectomy" on Friday.  Somehow at least finally going for surgery seems to help.  Everything went as they said it would and expected, so now I just wait for the results.  The doctor saw me after surgery and he said he felt confident there will be nothing more there, but until I see it in a pathology report, and I don't think I have the same confidence.  Ironically just prior to going in for surgery, the OR nurse saw I was crying, she took my hand in hers and said "it will be ok, I am a breast cancer survivor" this really helped because I knew she knew how I was feeling and how scared I was.  She continued to hold my hand as they put me under.  I have come to realize that women who have had to deal with this are one of a kind, and like angels who just seem to know the right things to say to help get through this.  One step at a time.  Thanks for everyone's support and kind words.  It really does help.  I do feel better haven had the surgery, now just wait for the results.  2 weeks!!!!

    Take care and praying for all of us

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  • butterfly137
    butterfly137 Member Posts: 106
    edited July 2009

    I read this thread today, and was wondering if you had the results.  I played the waiting game for almost two months just to find out everything was negative.  And although I am not a mother, or even a wife, so I cannot imagine half of your plights, I was still very scared/anxious/angry...and many other feelings. 

    I will have you in my prayers formykids...I really will. 

    Much Love To All!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2009

    Thanks for your thoughts and prayers butterfly.

    I suppose you could say my results ended up being good news/bad news, if that makes any sense.  I am still trying to absorb it all right now. My diagnosis is Lobular carcinoma in situ. It is not invasive cancer.I have my family doctor who sees this as without question breast cancer and the surgeon who emphatically says it is not breast cancer.  As I try to learn more and understand this better, sounds like it is quite controversial whether or not the medical community think it is, only adding to the confusion and stress for me.  I have an appointment with an oncologist next Monday, hopefully this helps.

    Thanks Cathy

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  • butterfly137
    butterfly137 Member Posts: 106
    edited July 2009

    Cathy,

    Wow...even more confusion.  Well, YOU are your best researcher.  That is one thing I found out.  I literally had to go and get my results from medical records because my doctors office wouldn't call me back.  That's a long story, and then I couldn't read half the words.  At that time, this was the first lump, and the results basically said there was a mass that needed more testing, so here i was 23, I just turned 24, and I was just by myself, and scared to death.  All I could do was go home, and snuggle with my dog.  But, then we I pulled myself together, the women on here helped out and were right there for me.  Hang in there....keep me posted! 

    Much Love To All!!!

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  • concernedsis
    concernedsis Member Posts: 256
    edited July 2009

    Listen to your surgeon and see an oncologist. It is not cancer, actually it should be called lobular neoplasia which means they are abnormal cells confined inside the duct. It means you have a higher risk of breast cancer - but you do not have it now. There is some thought that tamoxifen may reduce that risk. Check out www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

     Ask questions and get a 2nd opinion until you are comfortable with your doctor and your diagnosis and treatment.

    Good luck!

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