Scared

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Basia
Basia Member Posts: 790

I am preparing for surgery on the 19th and I am terrified.  I don't know much at this point other than I have 2 spots on my breast and possibly a lymph node.  I keep thinking the worst.  I had BMX in 2010, chemo and targeted therapy (TCH). I thought I did everything to prevent this from happening again…but here I am.  I know I am feeling sorry for myself and it will be ok, but I can't help but thinking the worst.  

Thanks, just needed to vent.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    Basia I wish you the best during your surgery. Hang in there once you have all of the answers and a plan things calm down. 

    I you need to vent I am happy to listen. I am in the same pity party boat. 

  • jujuga
    jujuga Member Posts: 4
    edited May 2014

    So what's been happening

  • Basia
    Basia Member Posts: 790
    edited May 2014

    Feeling a bit better. Had an appt with my PS the other day, he is going to be present for the lumpectomy, actually he is opening me up and then closing me to make sure that the BS doesn't destroy "all the good work" he put into me, lol.  I really love this man, he is awesome.  He as well as my Onc, are still in shock over this.  They are shaking their heads over this.  

    I'm still scared, I need to know what I am dealing with. I feel so bad for my little girls, they deserve a summer full of fun and excitement, not have to deal with me go thru treatment again.  This time I have to be honest with them. When they were 3 it was easy to lie and make them believe all was ok, just mommy has a tummy ache. At 7 they won't believe anything but the truth. This is so hard on the whole family, my poor 81 year old mom doesn't sleep anymore, my husband is walking around just going thru the motions, even my in-laws are scared for me. My brothers are all in denial, they can't even look at me without this sadness in their eyes.  It feels like they all know this horrible news and I am the only one trying to be happy.  

    I just need to know what the deal is and then we can all move forward and try to make the best of it. 

  • RCR
    RCR Member Posts: 36
    edited May 2014

    My heart goes out to you! You have been through this before and probably know behind this new fear is that the fear is the most torturous part of the process.  Make sure you get your sleep for you to handle your emotions as well as possible even if you need good drugs! My three girls are 4,6,&8 now and my journey began two years ago and I just had, what I hope to be, my last surgery just two weeks ago.  All my girls know the hospital and oncology office all to well.  They do the puzzles in the waiting rooms they should never have to do and they enjoy it (the puzzle, not mommy's apt:). They like coloring in the hospital childcare area.  I feel that honesty is the best policy with the older ones especially. Not brutal honesty, but enough to be part of a conversation where they can ask questions and not have a scary mystery looming over them. Kids adjust and will find a new normal if needed. Yes I said IF NEEDED. I hope you don't need to take most of my advice:). My kiddos are some of the goofiest and happiest kids around and are faced with my disease on a very regular basis and they will for a very long time.

    Answers, answers, answers will help with anxiety. You need plan of what you need to do to get back to "normal".  I know it is scary and you will get through it!

    Best of luck and hugs!!!!!

  • BabyRuth
    BabyRuth Member Posts: 264
    edited May 2014

    Basia-I have been in your shoes and understand what you are going through.  I felt so guilty with each of my recurrences.  I felt like I had let all my supporters down and absolutely hated telling my family.  I did not want to put them through the emotional anguish again.  My kids seemed to take it easier and were of the mindset that because I had handled it before that I would have no problems the next two times.   I will be thinking of you and praying for good results.

  • rosemamma88
    rosemamma88 Member Posts: 22
    edited May 2014

    Basia,  my heart hurts for you.  I understand what you mean about wanting your kids to have a good summer.  I said those EXACT words to my husband yesterday.  I was just diagnosed with a recurrence after I had DCIS and thought I was doing the extreme in 2011 by having a Bilateral Mastectomy.  Now it is back and all our plans for summer are shot.  I know my family cares about me more than summer plans, but I feel like a burden.  Last time I got away with not needing radiation and chemo.  This time I know radiation and tamoxifen are in the cards, but I'm not sure about chemo until after they take out some lymph nodes.  

    I thought it was interesting that you said your PS wants to be in the surgery to be sure BS doesn't mess up his work.  My PS told my surgeon that he didn't think he needed to be in there and didn't need to replace the implant probably.   But the tumor is right next to the capsule around the implant.... I am shocked he doesn't think he needs to be there.  Should I look for another PS?  

    I have an appt with him in a week so I'll ask all the questions myself and see what he says.

    Hang in there ladies.  It can really be discouraging to get this recurrence thrown at us again.  I find myself not wanting to think about it.  I wanted to get a dog and have the focus be on something happier.  Hubby's not too sure that's a good idea right now.

  • Basia
    Basia Member Posts: 790
    edited May 2014

    Rosemamma, I am so sorry you are going thru this too! I keep telling myself that everything is going to be ok and this is just another bump in the road.  I was very lucky to have found my PS, he is very unique in how he runs his office and how he sees his patients.  He and his partners specialize in BC patients, that is basically all they do at this time.  They also have a psychologist on staff to help us (his patients) deal with the emotional side of BC. He treats us as a whole, not just the portion that is technically his "job".  He said he could be on "standby" during the surgery, but since he has surgeries booked all day long in the same hospital, he wants to be there.  He feels bad because I went to him first with all of this and he said it was just scar tissue. 

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    Basia thinking about you today. I hope your surgery goes smoothly. 

  • RCR
    RCR Member Posts: 36
    edited May 2014

    Basia, you are in my thoughts today! Best of luck to you.

    Rosemamma, I like the dog idea as well. I hear your husband's concerns as well. No puppies of course, but a dog to sit with you and love on sounds nice. An older well trained dog may be perfect. Have you thought of an assistance trained dog that maybe did not graduate. I know we have a blind school in my area and they adopt out the dogs that have gone through most of the training, but fall just a little short as perfect guide dogs. They are highly coveted and there is a waiting list, but cracks can form in the process. Do some research and see what you can find in your area.Whatever you do, do not put more work on yourself. Maybe a bulldog. My sister practically has to push that dog out to go for a walk:) very lazy and lovable. 

    You ladies are strong women and this is a short period of time in a long life to live with your families!

    BC sucks!!!!!!!!!!!!  <3

  • Basia
    Basia Member Posts: 790
    edited May 2014

    Surgery was a breeze! I know surgery is the easiest part of all of this, now its the wait and see what's next phase.  The pathology report won't be ready till next week, so there is nothing for me to do at this time. I have to say, I feel so much better knowing that the "cancer" is out of my body.I put it in "" because I still pray that it is just scar tissue and the needle aspiration was incorrect.  Mistakes and miracles can happen, right? I know I'm just deluding myself, but it will work so that I can enjoy my memorial day weekend with the family. :)

  • Alive4Five
    Alive4Five Member Posts: 2,394
    edited May 2014

    Glad to hear it went well Basia! You sound good, and upbeat! :) 

    And yes, miracles are still very possible! 

    Sending ((hugs))! God Bless!

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    Basia we all wish for them to be wrong. Glad you got thru today easily. 

  • MameMe
    MameMe Member Posts: 425
    edited May 2014

    "I am SOO with you Basia, Rosemamma, JamieH, BabyRuth and RCR, on the emotional waves you describe, including the thoughts that they got it all wrong! I am trying to be a grown-up about the recurrance I am dealing with, but sometimes its almost impossible. I hope you will post as you find out more. I had two episodes of bc, ten and one year ago, both treated according to protocal. I had radiation but no chemo. Even with mindful follow up this year, things progressed to mets. I am committed to finding out the most promising ways to follow those with second occurrances or recurrances, and pushing to get those standards established. This kind of thing, getting blindsided by mets when earlier scans or CTC observations could have picked it up much earlier, well, its for the birds. I read a lot of the stuff on a website from Johns Hopkins, "Artemis". A great and extensive database of bc related research.

    I got a new cat a few weeks before my dx, just felt compelled to visit the shelters and eventually found our little fellow. He is such a comfort, and so silly! The best of both. Very affectionate. He is pretty low maintenance. My husband fell in love with him, also, which is neat. A positive thing to bond around. :  )

  • Basia
    Basia Member Posts: 790
    edited May 2014

    Oh Mameme, I'm sorry you are here again! This roller coaster ride is too much for anyone to handle, but it seems like you are handling this well.  I have a question, how the h3ll did they miss something so much that it metastasized to so many places? I don't understand how these little cells elude all this testing we go thru? I can understand before the days of MRI, CT and PET scans, but today we have such technology and yet we can't figure out how to control these little buggers.  I don't get it! 

    I am trying to be adult and come to terms with where I stand with all of this, but it kills me because I did everything they told me to do without hesitation, anything to make sure this wouldn't happen and yet it did.  urgh! 

  • MameMe
    MameMe Member Posts: 425
    edited May 2014

     As far as being able to detect recurrence early, My money is on circulating tumor cell counts. That is easy to do, just a blood test, and I think there is some good data that suggest those cell counts can correlate with new cancer activity and also indicate no additional cancer activity. For people who have had two episodes of cancer, it should be mandatory. 

  • Basia
    Basia Member Posts: 790
    edited May 2014

    I think the blood tests should be mandatory on all of us, it can't cost the insurance company that much and if caught earlier, the company saves money on the treatment side.

  • MameMe
    MameMe Member Posts: 425
    edited May 2014

    Basia, how are you doing now, and what is the situation with path reports? Thinking of you, hope the long weekend went OK.

  • Basia
    Basia Member Posts: 790
    edited May 2014

    just waiting on the damn report to come in, I was told it could take till the end of the week, but I am hoping for tomorrow.  Overall, feeling good. Went away for the weekend with the family which helps. Being away from it all is therapeutic. We are up in a cabin in the mountains and enjoying the quiet. Had a bit of a silent meltdown on the 3 hour drive up here Friday night, but other than that enjoying my children's laughter :) and hoping praying that I have many more years of hearing them laugh, and fight with eachother. 

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    Basia that is torture to have to wait for the holiday weekend. I hope you get some answers tomorrow. 

  • Basia
    Basia Member Posts: 790
    edited May 2014

    Just got the phone call from BS.  Pathology report shows that both spots and a lymph node had cancer cells.  Same characteristics as last time, ER/PR- HER2+.  I expected this and am somewhat relived to at least know what I am up against.  Tomorrow I call oncologist and start treatment process.  This really sucks! The shocker was the lymph node, that threw me off.  That would change this from local to regional recurrence.  I feel so bad for my husband, he is having a harder time accepting this than I am at the moment.  

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    ((hugs)). Yes it sucks but remember it's a regional recurrence and now is the time to stop it. 

  • RCR
    RCR Member Posts: 36
    edited May 2014

    hi. OK now I am up to date. Boo on that damn node! Glad you have that Her 2 on your side. You WILL gave many many more years with your children. 

    Hugs!!!!

  • BabyRuth
    BabyRuth Member Posts: 264
    edited May 2014

    Sorry about your results and that darn lymph node.  It sucks that you are having to deal with this again.  Once you get to your oncologist and get your treatment plan you will feel better and be ready to fight. Just remember that there are many of us(unfortunately) who have had recurrences and have fought the battle a second and even third time successfully.  I am now a year out from my last diagnosis and am doing great.  Keep us updated on your treatment plans.

  • Basia
    Basia Member Posts: 790
    edited May 2014

    thanks! I know this is going to be ok. Just sucks having to go thru it all again. I'll feel better after meeting w the oncologist tomorrow.  This lymph node thing is confusing. His PA said the report states on the lymph node not in. Now is that a type-o or does he mean it was literally on the node? According to the surgeon, she didn't know she removed the node, she said it was stuck in the scar tissue, so this is all very confusing to me. 

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    Sounds like your scar line had a lymph node in it. I hope they can clarify tomorrow what's going on and you can get a plan in place. 

  • Monis
    Monis Member Posts: 472
    edited May 2014

    Basia,

    image

    Hugs coming your way.  So sorry you have to revisit this again.  This is the thing that I worry about all the time, but I guess we all do.  

  • MameMe
    MameMe Member Posts: 425
    edited May 2014

    Basia, Eager to hear your upcoming plan, am backing you on getting the most info you can on a thorough dx and effective tx plan. Mame

  • Basia
    Basia Member Posts: 790
    edited May 2014

    Hi, back from oncologist. boy was i hit with a whammy. I knew he was going to say chemo, but I wasn't prepared for the amount and duration.  Starting with 4 rounds of AC, once every other week.  Then switching to 12 weekly doses of taxol. mixed with the taxol will be Herceptin and Perjeta every 3 weeks.  The Herceptin and Perjeta will continue every 3 weeks for 3 years! 

    Needless to say I will need a port, which drove me insane the last time, hopefully they have come out with smaller more flexible ones in 4 years.  

    I am not a happy camper right now.

  • Basia
    Basia Member Posts: 790
    edited May 2014

    the plan is 4 rounds of AC then 12 weekly doses of taxol along w taxol every 3 weeks perjeta and herceptin will be added. P&J will continue every 3 weeks for 3 years.  After taxol I get 6 weeks of radiation. Looks like a fun filled 3 years ahead of me. Feeling very sorry for myself right now and just want to scream. If I hear another "healthy" person tell me it's going to be ok I will punch them in the head. I am so sick of hearing it and the pity tone they all have. 

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited May 2014

    Basia did they mention why 3 years ??  ((Hugs)). I hear you on the healthy people saying things. 

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