Need emotional support

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kathleen1966
kathleen1966 Member Posts: 793
edited June 2014 in High Risk for Breast Cancer

Well I think I have just figured out that I am a "High Risk Women"  I am being treated for Breast cancer and was told I have a 30% chance of having a recurrence.  That seems high to me? I am looking for some emotional support. I have been doing really well up until this point but now the holidays are here and I am feeling very, very down.

Also, I was wondering if there is anyone else out there who has had a shot to boost red blood cells.  I can't remember the name of the shot.  But after reading about it (not told anything), I am a bit concerned.  I realize I may just need it.  What do you like in your oncologist.  I am not sure if I like mine.  I don't dislike her, she is pleasant and nice but I feel like deicisions are made without even contacting me and I am not feeling connected. This could be because I have had little problems with the chemo (problems that would require more visits, I am not saying I have not had problems that I can deal with at home) I feel as if I know nothing.  I had four positive lymph nodes but I sometimes sit around wondering exactly HOW positive they were.  That is all that was ever said. I have asked, how much cancer was in the lymph nodes, was there encapsalation?  All it says on the path report is positive.  I was told it would say encapsalation if I had this. It seems others know more about their nodes, etc.  I am a person who likes to know everything. I go home and do research on the internet.   I am just feeling very alone gowing through this.  I hate the chemo room I sit in.  It is run down, old.  I have good insurance but little options as to WHERE I can get treatment.  The city I live in is monopolized by a UPMC HMO and ALL of the hospitals have this insurance except for two, which are my two choices. My Aetna HMO is not accepted at any of the UPMC mendical facilites (long story about "non-brofit" UPMC purchasing buildings all over the city and building new medical facilities, all top notch).  I am rambling.  I am feeling a bit alone here. I have enrolled my children in a support group at Gilda's and I am surrounded by women my age who have all had recurrences and are now surviving stage IV with young children.  I too, thought that everyone survived Breast Cancer. I had no idea. I am still in shock that I ever ended up in this mess. There has never been any history of breast cancer in my family....ever yet guess what?  Being a woman is the highest risk.  Still, being what I consider young (44), I am a bit overwhelmed by all of this. 

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  • shells43
    shells43 Member Posts: 1,022
    edited December 2010

    Dear Kathleen (my daughter's name too),

    I'll be 44 in a couple of weeks so we have a couple of things in common. I was diagnosed in March and I'm still in shock! How did this happen? No family history, had my kids in my 20's, breast-fed them, etc. etc. It definitely sucks big time. That being said, life goes on. The holidays bring some of us down for lots of reasons, but adding BC in doesn't help. It's ok to feel down, just don't let it consume you. We are all here for you to whine & moan, vent, whatever is needed. It is tough for us moms to do that sometimes, feeling like we always have to be the strong ones. This is a great place to come for that. How old are your kids??

    Do you have a copy of your pathology report? I'm not sure how positive nodes are reported (with what detail, I mean). I have read of others getting second opinions on their slides and tissue samples, but I don't know how this happens. I think the easiest way, since you are not in love with your oncologist, would be to get a second opinion from another Onc that takes your insurance, surely there is more than this one Onc, and ask him or her to review your pathology report. Then if he or she has any concerns, maybe THEY can get the second opinion on it. You could also just insist on more details from your current Onc and express that you need more communication from her. Tell her you want to ensure you are getting the most advanced treatment for your type of BC. This take some research on your part, but it sounds like you are already doing that. Try to make a point to bring it up so she knows you mean business. Some on this board say they refuse to put a gown on until the doc takes time to talk to them. Then they change into the gown. She is working for you.

    If your chemo ward/infusion center is as much of a "downer" as it sounds, you really should try to go elsewhere. It's bad enough to take chemo and then NOT have a pleasant, upbeat environment. I'm in a rinky dink town and have a very nice infusion center at our local hospital, so surely in Pittsburgh there is somewhere nice. Leave your city and drive over to the next town, or start making some phone calls. Maybe get some recommendations from women in your area (use the boards). Hopefully someone will come along soon and post some more helpful info than I can give you.

    Not everyone does survive BC, but the numbers are definitely in our favor. I just keep thinking of two of the ladies in my church who have been 15+ year survivors, to keep my positive attitude. It is definitely hard to do sometimes. One of them is in her 90s and still hikes part of the Appalachian Trail every summer. You cannot let fear take over your life, or its like you've already died. That is the hardest thing, I know. You can do this!! It will be ok and I think if you find a more supportive oncology team, you will feel more optimistic. I never get negative vibes from my team, and that really means a lot.

    I wish you the best!

    Shelley

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  • shells43
    shells43 Member Posts: 1,022
    edited December 2010

    bump

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited December 2010

    Thanks soo much, hearing another prespective has helped a lot.  And you are right, the Holidays have something to do with my down mood.  I am usually a Christmas lover.  Thanks for taking the time to write a well thought out response! 

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  • shells43
    shells43 Member Posts: 1,022
    edited December 2010

    Kathleen,

    if you have any questions or just want to chat, feel free to PM me.

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  • Jo_in_California
    Jo_in_California Member Posts: 13
    edited December 2010

    Kathleen,

    Wishing you lots of good thoughts right now.

    It's easy to feel down during the holidays, and if you have kids, I think it really makes you think darker thoughts like, "How many Christmases do I have left?"  Just know that the holiday season will soon be over, the days will start getting longer, and the sun will start shining more brightly.

    I am so sorry you are feeling so all alone.  Just know that there are many of us feeling the same way right now...not sure if that's much consolation, but you are not alone.

    Agree with the OP that you need to find a more positive place to get treatment.  It's not right for them to allow an chemo room to feel drab or depressing.  Let them know why you're leaving if you do decide to leave for another place.  They need to know how the conditions are making their patients feel.

    Best of luck, and I hope your treatment goes very well!

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  • shells43
    shells43 Member Posts: 1,022
    edited December 2010

    bump

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  • christinagogee
    christinagogee Member Posts: 1
    edited December 2010

    hi kathleen ....i have read abt u n feeling so pain for u ,,,but dear its life n anythng can happen over here so jst v have to learn to live vidout,,,,wel i ll pray for u ,,,c ya bye,,,,

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2013

    Kathleen,  I think it is possible to have your slides sent to another pathologist,  not in your same network/facility, to have them re-read.  I think you could start by calling a major facility, such as M D Anderson in Texas or Sloan-Kettering in NY, and telling them what you want to do, ie. have the slides and reports reviewed and get a second opinion.  They will be able to guide you.  I think all insurance will pay for a "second opinion", but I'm not sure how it works if treatment has already begun.  It might just be to help decide on treatment.  Anyway, I don't think it is too late to get another opinion, or even change oncologists.  I hope others who know more about this, and there are many on this site, will help you.  Just keep asking your questions, on other threads, until you get your answers.  Don't feel that there is something wrong with you for wanting to know more.  Your health is very, very worth following up on.  It seems like we need to give ourselves a crash course in breast cancer when we are least able to cope with stuff.  We have been where you are, and we understand.  Write to us, ask, and ask again.  Hugs.

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