News Keeps Getting Worse :(

Janett2014

Sean,

You are both starting this journey with a good attitude and you're right, you'll "come out of this with one hell of a strong bond." I know that my husband has been a huge support for me. Llizz and I are both lucky that way!

lintrollerderby

fightwithtammy: I believe any requests such as that might need to be presented to the mods for approval. I'm not sure, though. I'm sorry to hear about your mom. You stated that she's Stage Ia and been going through this for over a year and you guys are making several trips a week for treatment. That's a long time for active treatment of non-metastatic disease. Maybe you could tell us a little more about her and/or encourage her to come visit the site as well. 

LLizz

Hi, 

  This is Liz.   I also noticed that the doc noted that one of the biopsies samples showed DCIS.  Seems like a moot point since the other samples showed IDC.   Does it make any difference?  Just curious.

lintrollerderby

It is a moot point. Since you have IDC, you will be treated for that since its presence is of the most concern. The DCIS will need to be removed also (if you're planning on a lumpectomy), but if you're having a mastectomy, it'll come out with everything else. It won't change your treatment plan as far as anything extra being added on.

LLizz

Thanks!  I am glad you answered my question so soon

JohnSmith

Liz / Sean...

Sorry you guys are here. I'm relatively new here as well, although my fiancee has a totally different type of BC.

I'd recommend Sean gets his own user name on the forum, especially if he's like me and wants to get educated on the latest treatment / research / theories, etc. Asking lots of questions is one of the many coping mechanisms I use to deal with the situation.

I wish you guys lots of luck! Technology is advancing fast and we are just around the corner of new treatments / medicine.

John

lintrollerderby

You're very welcome.

msphil

Hello sweetie, people are so shocked when you tell them that I really don,t believe they know what to say,I have a favorite cousin we were like sisters, more than our real sisters and she didn,t come to see me or even call me, yrs later she said she didn,t know what to say, I told her I just wanted to see you for you to hug me, call me,just be there But she was scared,what did she think I was, and since she has been ill for yrs now I,m always their for her, visitng the hospital and when she is home. People are so different at a time like this,  I,m sending HUGS to you now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!HUGS. I,m a 20 yr SURVIVOR(Praise GOD). Hang in there. msphil(idc,stage2, 3 nodes involved, 3 months of chemo before L mast, then 3 months after, rads and 5 yrs on tamamoxifen) 

LLizz

Thanks. 

  Today was seriously bad.

Maureen813

LLiz 

Was thinking about you today. I'm sure it was tough. Hang in there it will get better hope you and doc have a plan? 

Tomboy

you will have better days, you will

PoppyK

LLizz/Sean-

I am sorry you are faced with such a challenge. I am new here, too.

Liz, since you are a social worker, I assume you are used to taking care of people and their needs. At this point, remember it is important now to take care of yourself. This is something I struggle with, too.

Sean- ask Liz how you can best help her. In my experience, husbands don't read minds or clues very well. So it is easiest to just clearly and concisely tell him what I need; even if I don't even know what I need. My husband is extremely optimistic, while I am a realist. He is a Rainbow Kitty to my Grumpy Cat. I asked him not to say everything was going to be okay, until we know that. What I needed to know is that he would be with me, and would do anything, anything for me.

 I told him exactly what I needed. My husband loves to fix my problems, so I told him I don't need him to fix the cancer. I do need him to advocate for me, listen to me, be there supporting me. I told him I needed him to stop interrupting the doctors because even if they weren't answering his question, they were providing me with valuable information. The question could then be asked again. I told him that he needed to let me be sad sometimes; it wasn't his job to make me happy at this time. My husband fields phone calls for me; there are times when I don't want to repeatedly talk about my diagnosis. Sometimes I just want to rest, or hang out with my boys. 

I hope my response will help you.

I am sorry that today was a bad day for you. Was it something in particular?

mrenee68

LLizz/Sean I'm so sorry you have joined us here, it's the last thing a newly married couple should have to deal with. As many of us know, life has a way of throwing some pretty crazy curve balls at us. Some imprortant things to remember is keep breathing, take it one day at a time, one hour, one minute, or one second. Cry if you need to be mad or how ever you are feeling, your in titled to your feelings. 

Sean be there for your wife, give her space if she needs it, hold her if she needs it, and tell her you love her and she is beautiful. Go to her appointments if you can and help her with the decisions. 

There will be good days, bad days, and awful days, but this to shall pass. Take care you are in my thoughts and prayers.

LLizz

Yesterday was so hard.  I kept breaking down and crying throughout the day. 

 Towards the middle of the day I got a call from my medical onc. office telling me they would have to bump back my inital consultation appointment, because they STILL don't have my HER2 status back from the pathologist.  I told them to please call the surgeon's office because they ordered it and THEY told me it would be back by yesterday.  Well, they already did. 

I called them too.  HER2 is not expected until Thursday.  I was really focused on having my appointment today.  I was really looking forward to it.  I feel like a mess.

ahdjdbcjdjdbkf

LLizz and Husband, Maybe this will help you. I work with a triple negative stage III sister. She is now 6 years cancer-free with no signs of recurrence!

Maureen813

LLizz. Well that sucks!! I'd be crying too!  Thursday will come before you know it. In the meantime start writing any questions for the onc in a notebook or journal so you are well prepared for the appointment. Some questions that come to mind:

1 chemo if yes before or after surgery? Is there a difference in outcome? Do they offer any support groups? 

I'm so sorry you have to wait longer than expected ((((((((big cyber hug))))))) to you and hubby 

Love

Maureen 

Ps hang in there 

LLizz

Thanks, 

  The onc doc actually called and said that he would see me anyway.  He is helping me bump up my other appointments, wasn't able to give me a treatment plan because he still needs the HER2 status, but he did say that often chemo is successful before surgery with ER- and PR-.  My breast MRI was moved up to tomorrow morning and he also called a fertility doc friend to hopefully see me this week to and talk about eggs for babies later. 

   Good news and I may have my HER2 status tomorrow

edwards750

mrenee68- "this too shall pass" was a saying my father used all the time. It has gotten me through some tough times. 

Diane 

Maureen813

good news. Good that he saw you today. You needed to see him regardless of the missing her2 stats. If anyone can manipulate the system to bump around appointments, he's a good person to have on your side. Hopefully he can call you with the plan. 

LLizz

I got my results back.  I am HER2+   I don't know what that really means.

Maureen813

that means there are more treatment options available to you. It is a targeted therapy. 

Maureen813

http://www.breastcancer.org/treatment

The link is to some targeted therapies. 

LLizz

thanks

placid44

Hi Liz,

You may have seen that there is a forum for "Her2/neu positive" bc. Maybe there are some women there who are ER-pr-her2+.

LLizz

Thank you for the suggestion! 

I am going in for chemo consult tomorrow and I got a list today of my chemo drugs; Taxotere, carboplatinum, Perjeta and Herceptin. 

Now I am off to do research  

Maureen813

looks like things are starting to come together. Rest, rejuvenate, and gear up for a good fight. You will beat this. There are many more healthy cells in your body than those nasty buggers. Keep us posted we care. Not sure if you are religious but saying a prayer for you and hubby anyway 

tgtg

Liz, and Sean--

So sorry to hear of your situation. The bc diagnosis is never easy to hear, but has to be especially hard for a 31-year-old.  

But precisely because of your age, I heartily suggest that you (and your husband) read Living Well beyond Breast Cancer, by BCO founder Dr. Marisa Weiss.  A friend recommended it, and after the shock that a disgustingly healthy, fit, and active 71-year-old like me could get bc (which until then I never thought would happen to me), I found a copy at the beginning of my treatment.  I read it eagerly both for the information it gives a novice like me about breast cancer itself and even more eagerly for the affirmation that one can live well after treatment and for its concrete. practical tips (on nutrition, exercise, pain management, sexual intimacy, etc.) about how to live well.  

The book is full of solid information about all aspects of the disease but it is not couched in pompous, dense "medicalese."  Dr. Weiss conveys the medical facts (even the hardest ones to deal with) in a natural, engaging, human voice that speaks gently and reassuringly--and sometimes humorously--to the reader.  Knowing what to expect (especially from a physician who has been on our side of the breast surgeon's scalpel) made me comfortable throughout treatment, and also helped me formulate questions to bring to the surgeon, oncologist, and radiation oncologist.  

Good luck to you as you embark on this journey--not a journey that any of us wanted to sign up for but one that luck (the bad kind), genes, and happenstance booked us for without consulting us.  Remember--and live--those words from the Obama campaign, "Yes we can!"  With a positive attitude and a good treatment team, you can "live well beyond breast cancer."   

LLizz

Thank you TGTG.  Your words are inspirational.  I will have my DH order us a copy.  I am unsure I will be receiving a paycheck for awhile.

LLizz

I appreciate thoughts and prayers.  They mean a lot to me.  Thank you for your positive words and good suggestions.  I am not sure what to expect yet with chemo.  I have an appointment tomorrow to take me through the expectations.  I tried checking out forums today, but reading about the body changes started to weaken my resolves and so I decided to default to my doctor's wisdom tomorrow.  (No point in worrying about heart failure or nails falling off tonight).

  I have been thinking about nutrition and other things. I like to juice and I think that this will work in my favor.  My mother is coming from California to visit us next Monday.  I am happy.  I am lucky my mother is still alive and even more lucky she is of the kind and nurturing variety.  

Anonymous

LLiz, Welcome to BCO. Sorry for the reason you have to be here.Everyone here has given good advice. The beginning of treatment is such a difficult time - you will get though this though. It sounds like you have a wonderful support system and that makes such a huge difference in our outlook. I recently finished treatment of TCH and I'm doing well. I also had a PR- ER- HER2+ tumor - as well and a TN tumor. Sending good thoughts your way during your treatment. If I can be of any help at all, please feel free to PM me anytime. Gentle hugs.