If I'm one of millions why do I feel alone?

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Scaredchick
Scaredchick Member Posts: 18
edited December 2014 in Just Diagnosed

I found a lump a few days after visiting my sick father. I had mammogram and ultrasound next week. I buried my father and had biopsy next day. Bad week, yup!

My results came two days later... Invasive ductal carcinoma. Path report says ER positive, PgR positive HER-2 equivocal 2+, ki67 unfavorable. What does that mean?

I was a general nurse and I can't read my own report!

I want to see a surgeon right now but the appointment I have tomorrow is with a doctor I already feel uncomfortable with because the staff was so rude.

I live in Bethesda area and have gotten great and many opinions of a doctor and team out of John Hopkins but should I wait weeks?

Everyone keeps says that breast cancer is so survivable now that I need to just do what I have to and it'll be fine. I know that's true but they didn't watch their mommy die young of this, and it's not their body being invaded by little killers. Those people haven't walked in my shoes.

Although I already have my motto... Fight like a girl! Right now I just feel alone and can't stop the tears.

I know I'm all over the place and don't even know a proper question to ask, guess I need to vent to someone who has been there or is there. So forgive my ranting. I should delete this and give space to someone with a working brain

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Comments

  • CassieCat
    CassieCat Member Posts: 1,257
    edited December 2014

    You are not alone. Sadly, all of here are walking in your shoes to some extent. But keep posting. This community has helped me IMMENSELY as I have navigated my treatment since last August. I'm not an expert and can't tell you what you should do, but I can offer you my sympathies. If you have a choice, find a doctor/staff you like. I like everyone who's treating me EXCEPT my oncologist. Thankfully, I don't interact with him nerly as often as I do with everyone else.

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  • Scaredchick
    Scaredchick Member Posts: 18
    edited December 2014

    thank you so much. I needed to hear that, and I love your kittie

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  • ml143333
    ml143333 Member Posts: 658
    edited December 2014

    You are not alone.  We all have our days of feeling alone even though we are surrounded by supporters.  As much as this disease has been publicized, it is still a personal disease and everyone processes their feelings differently.  Continue to post here as much as you want or need to.  that is what this forum is for - support in all forms.

    Why not keep the appointment with the first physician and make an appointment with Johns Hopkins for a second opinion?  Most of the time, you do have time to make appropriate decisions.  When you go to your appointments, try and take someone with you that can be your second set of ears.  I also write down questions in advance and take them in with me.  When my MO answers, I write them down lest I forget (chemo brain, you know).  LOL

    Fight however you want, just continue to fight!

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Dear Scaredchick, We are so sorry for all that you are going through. Receiving a breast cancer diagnosis on top of losing your father is so much loss and grief to bare. We are so glad that you reached out to this supportive and well informed community of others with shared experiences. It sounds like you are getting some helpful responses here. You also may want to see this linkPathology Report which has a booklet that you can read about understanding your pathology report. Keep us posted. You are not alone. The Mods

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  • Scaredchick
    Scaredchick Member Posts: 18
    edited December 2014

    thanks. I'm sure I have time it's just that waiting is so hard. I guess it gets better once there is a plan? My mind is going places it has no business going until the doctors tell me. I think my medical background is a hinderance in this as I've only seen the bad results.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited December 2014

    Take it from another nurse: we are the worst about laying black crepe! That said, you will feel much better when a plan is in place. That is how we have practiced our whole careers. BCO is the best place to join with other women who have been right where you are today . As time goes on, they will all join in and help you get through this tough time.

    You have got to feel comfortable with your onco and staff. Get that second opinion. I already knew mine and would have been devastated if I couldn't have used him. I'm not sure which of us was worse off the day we found lung mets, him or me!

    The National Cancer Institute has guidelines you can look at after you find out more info. About your tumor size etc.

    Best of luck to you and our support will be here. Waiting is hard. You can ask them to put you on their cancellation list also.

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited December 2014

    I agree that the waiting is the worst. I felt so much better once I had a plan in place. The fear of the unknown can get to me every time. Thanks for the nice comment on my kitty. :) I have three, and they are good company to me.

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  • mdg
    mdg Member Posts: 3,571
    edited December 2014


    I am so sorry you are going through this especially after just losing your dad.  I am so sorry for your loss.

    BC is a very lonely disease.  I was diagnosed 4 years ago this week....I can't believe it has been 4 years.  Reading your post brought me back to hearing the news when I found out I had BC.  I cried all the time too.  The beginning is the hardest part because there is so much unknown.  I would find a doctor team that you feel comfortable with.  Two weeks isn't going to make a difference in treatment really.  I personally got two opinions on everything and then selected the doctors I felt most comfortable with.  That worked for me.  Once you select doctors and have a treatment plan you can start to get this over with.  Just know it will be a long year, but after that you can start to move on and get back to your life.  Here you don't have to be alone.  We all support one another and many of us have made long lasting friendships that have helped us get through this.  Hang in there.  Best of luck.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited December 2014

    I still find cancer very isolating, somehow there is an uncrossable moat between me and my friends, I have made some new ones who try to understand etc. but there is still that kind of void in the middle that somehow keeps you feeling separate............don´t know if I am making sense here to old timers.......

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  • Lily55
    Lily55 Member Posts: 3,534
    edited December 2014

    With KI67 it also depends on which part of tissue is looked at.......I had two analyses done and there was a massive (over 50%) difference between the two. Some hospitals don´t even offer KI67 as standard for that reason....

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  • labelle
    labelle Member Posts: 721
    edited December 2014

    To one of your questions: should you wait weeks to be seen at John Hopkins? I don't think that should be a problem. I was diagnosed on 9/29 per needle biopsy, did not have surgery until 11.13, after consulting 3 surgeons and visiting 2 separate breast centers. Every step of the way I was told I have plenty of time to make good choices. I was the only one who thought it was taking too long. All the surgeons, care staff everywhere told me the BC was probably growing for years so I had time to get second opinions and make informed choices. If I were you (which I'm not) I'd keep the appointment w surgeon #1 and book that appointment w John Hopkins ASAP, get my two surgical opinions/consults out of the way and go from there.

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  • Scaredchick
    Scaredchick Member Posts: 18
    edited December 2014

    not only was this all great advice but I feel so much better and safer knowing I have some time. I will see both surgeons and have calmed down a lot, what a marvelouse outpouring of care and understanding. You have strengthened me, and I thank and appreciate beyond words the received help.

    I did learn today I have been accepted to the top surgeon and breast cancer team at Johns Hopkins just waiting for date and time of appointment in the mean time I'll go see this first surgeon fiora first opinion to get idea of what kind of game plan to expect.

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