im new here, and so scared, please help me with what to do.

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tj1
tj1 Member Posts: 9
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

last year i had a BC specialist and was told i had DCIS in-situ estrogen positive. i had a lumpectomy, then 33 treatments of radiation on my left breast. during treatment i became sepsis with a seroma and had it drained 3 times.the BC specialist canceled his contract with me stating no one ever goes to the hospital over a seroma and to go find a doctor who deals with that.so i turned to my radiologist and he just gave me vicodine.so after a few hospital trips i got the seroma under control. but started hurting so very much in my breast,chest,shoulder, and down my arm. im now with a surgical doctor who has training in BC and she has told me i have lymphedema. i just had my year mri on the left breast and a spot was shown right under the skin, come to find out it has been on all 3 of my mri"s through out the year(it was missed). but the doctor and radiologist say it has not grown and they dont think it is cancer but we will watch it. i have also been told my cancer will return and quote(we"ll just cut the puppies off then).im in such constant pain and feel hot inflammation spreading but keep being told stop worrying.i live in NW arkansas and dont have a car and feel im just sitting here waiting to die . i feel i have no support system. i watched Christina applegate talk about she has a plan of what her doctors are doing. i dont think i have good doctors but dont know what to do.im mentally stuck and feel so alone.can anyone tell me what to do? thank you 

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  • tj1
    tj1 Member Posts: 9
    edited December 2008

    how do i see my replies?

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  • tj1
    tj1 Member Posts: 9
    edited December 2008

    how do i see my replies?

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  • dee1961
    dee1961 Member Posts: 1,672
    edited December 2008

    Hi Tj1,

    I am new to this site too so I cant tell you much of how it works yet.

    I just read what you said about being alone and wanted you to know that I will be here for you to talk to. I am just waiting to see a breast surgeon on the 30th so I dont even have a diagnosis yet, but I am scared and feel alone too. Waiting sucks and not having supportive doctors has to be hard for you. Chrisitina Applegate has more money than us I'm sure, so I think that plays alot in the roll of how someone may get treated? Just my opinion. Keep bugging the docs until you get what you need or find new ones. I will be here if you want to talk. Or maybe we can meet in in a chat room?

    Take care and know that there are people that do care about you!

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  • tj1
    tj1 Member Posts: 9
    edited December 2008

    thank you for your reply dee1961! im just having a real bad day i think, so what is your story? what kind of surgery?

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  • saint
    saint Member Posts: 1,877
    edited December 2008

    Hi Tj & dee,

    I have been at this game for over 8 years--I will help in any way I can..just ask or pm me anytime!

    This is one of the best sites for info. You can go to the home page & use the search bar to type in words from your path report. It will explain a lot, but the women on these boards are the true help. There probably isn't a question you could ask that one of us hasn't lived thru already! And we speak English-not medical-ese! LOL

    We have all felt everything you both have said in your posts about how you feel. It is NORMAL to be scared.  Waiting is the worst part......

    Cristina Applegate had prophylactic mastectomies---NOT in the same situation as any of us. BUT you deserve the same respect & consideration from your docs! DO not be a "good patient!" I have a rep at my clinic. I know some hate to see me coming, but once that rep was established, I haven't needed to be anything but kind to the ppl there. I generally get what I am seeking: star treatment! LOL

    Remember: The squeeky wheel......Be well & stay strong

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  • Katalin
    Katalin Member Posts: 230
    edited December 2008

    Hi, I'm new here too, but just wanted to say it seems there are so many good people here ready to help, and it's early Saturday morning before Christmas, and they might not be on the internet just now. Can you check on the internet to see where the closest cancer society support groups are in your neck of the woods? I agree with Dee...just keep bugging the doctors to get what you want/need, and asks lots of questions.  Use up all their time!  It's a hard thing for us all to go through, and finding support is an important part of getting through this...I hope this forum will be a good start for you.  I'm thinking good thoughts for you....! 

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  • dee1961
    dee1961 Member Posts: 1,672
    edited December 2008

    Thanks saint, 'Im a BIG SQUEEKY WHEEL when i have to be LOL:

    Tj I havent been diagnosed yet. My radiologist wants me to go to a breast surgeon to have her decide what course of action to take,he is suggesting removal of lump(nodule). So I will know more when I see her on Dec 30th. My feeling is they will do another biopsy, I had one done in the same lump 10 years ago. They told me then is was fibrotic cyst disease and i have had regular mammos since. I feel kinda guily because I somehow missed getting a mammo for 3 years now and the radilogist is freaking me out, So this is the beginning of my story.

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  • konakat
    konakat Member Posts: 6,085
    edited December 2008

    Hi,

     I feel like an old pro now -- only dx May 2007.  TJ1 -- your doctors are a$$es, how dare they speak to you like that!!  You might consider contacting your local American Cancer Society for a support group and ask about who their drs are.  Ask here for recommendations of doctors in your area.  If you need to travel, the ACS might be able to put you in touch with volunteers to help you out with that.

    And, this site is wonderful.  I regularly do a search for info and read the replies.  I post questions.  Collectively, the women here have seen it all, done it all.  You will get good advice and ideas.

    Also, call the American Cancer Society on Monday -- they can explain services and support that they can provide.  Check out their website this weekend.  Sometimes you have to ask for help.  Also, some oncologists/hospitals have a oncological social worker -- ask her/him or the nurses for help. 

    This is an awful disease and we deserve the best treatment around.  Insist on good treatment and respect.  I wish you all the best.

    Elizabeth

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  • konakat
    konakat Member Posts: 6,085
    edited December 2008

    One more idea -- sometimes I'm a bit overwelmed with all the info when I visit my oncologist/surgoen.  I've started to ask for a photocopy of all scans, reports.  I don't bother with the bloodwork, just the reports.  It's useful to go over when you get home, help you formulate questions, ask for information on why and why not things are done.

    I just started doing this a couple of months ago and it really helps.

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  • tj1
    tj1 Member Posts: 9
    edited December 2008

    thank all of you for saying your blessed thoughts and knowledge. dee i know how you feel, my wait was 5 days before thanksgiving and then a lumpectomy the day before. im just really upset that they missed a spot from the very beginning and just say we will watch it, in my mind that is we arnt sure if its cancer or not so every pain makes me think its growing. i will call monday to the ACS. where would i post to ask if anyone knows of a good breast cancer doctor in the tri-state area.or NW Arkansas?i can tell you who not to go to and thats dr.cross.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited December 2008

    Saint,

    How exactly is Christine Applegate not in the same situation as us?  She had breast cancer and was BRCA positive.  She removed her breast as a form of treatment.  I would say she is exactly like us.

    Teresa

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited December 2008

    I meant breasts...since she did remove both

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  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2008

    Tj1 ~ Here is a link to a list of NCI-rated cancer centers.  These are the best hospitals and cancer specialists out there.  If any of them are near you, you might look into getting a second opinion.  They will look at all of your treatment records, suggest any tests that may be needed at this time, and recommend any necessary treatment, which can be done there or you can also take their information to any other doctor(s) you end up choosing. 

      http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

    The suggestion to call the American Cancer Society in your area is an excellent one.  In addition to finding a support group to attend, they often have volunteers to help with transportation needs.

    There is also a fabulous list of resources that was compiled by a member on this board.  Since she hasn't popped up here yet to give it to you, here it is:  http://bb67.wikispaces.com/  

    Are you seeing a physical therapist for the lymphedema?  Even if it's not bad now, I think once you've had it, there are things you need to do to be sure it doesn't come back and get worse, which it can do if left untreated.

    This board is an amazing support system, so no need to feel alone.  But you definitely need to find doctors you like and trust and figure out exactly where you are and if you need more treatment at this point.  Please keep us posted on your situation.      Deanna

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  • marlegal
    marlegal Member Posts: 2,264
    edited December 2008

    tj, my recommendations:  take a notebook, even a small one, to every visit and write down what doc says.  ask him/her to slow down so you can take notes.   you think you'll remember, but you won't.  or take a recorder, or a friend!  but even if friend, i still recommend paper and pen.  as for why christina applegate isn't like us...in some ways she is, but she certainly has many more resources available to her than a lot of us have.  i applaud her for her 'coming out' and trying to educate though.  merry christmas to all :)

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  • saint
    saint Member Posts: 1,877
    edited December 2008

    I STAND CORRECTED! Teresa, I apologize....& thanx for the schooling!!

    My onc nurse told me Christina was having prophylactic masts due to her MOTHER"S dx!! I should have looked it up myself b4 posting--sorry! I now see that she had bc dx of her own. 

    Thanx Marlegal for your ever-constant support! Love ya!! 

    The only difference between Christina & most of us is $. We all know that it helps, but it can't buy a cancer-free life! 

    Hugs-be well & stay strong!! 

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  • Izzy
    Izzy Member Posts: 14
    edited December 2008

    tj1!

    Hang in there, I just was dx 1 month ago and have been through biopsy, MRI, ultrasounds and 3 lumpectomies. Whirlwind month! I hated to spend the money, but I bought a little recorder at Walmart for $34 and take it to my appts. I record my dr and listen to it at home and replay it taking notes, then I go to this site and do research. I have found educating myself has been such a big help. When I go to the dr I bring a list of questions from my research to ask him. I also try to get my test results told to me before my appt so I have focused questions to ask.

    I love NW Arkansas, my brother lived in Rogers for years.

    Please ask questions on this site, everyone is so kind. Browse other topics - lots of info here.

    You can send me a PM anytime. The waiting is hard and you feel alone, but there is this big network out here for you!

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  • Sierra
    Sierra Member Posts: 1,638
    edited December 2008

    Hello:

    Plse dont feel alone,

    you can come to this club

    and help abounds

    I am at 9 yrs out (almost) and if you

    ask, post.. answers and comfort

    come your way

    I felt alone many times  as well, some family

    members left, or ignored, but met so many fine people

    Try to take it

    one day at a time

    and pray or ask your Higher Power to guide you

    lots of luck and hugs

    Sierra

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  • amanda54
    amanda54 Member Posts: 5
    edited December 2008

    Hi,

    I am new to this site also, I was Dx 9/28 had surgery 10/8 now in chemo. I know that it's scary not knowing where everything is going. I  think I was dazed and fazed by everything and still a little in the dark. I have found support in places that I never thought possible and my bosses at work have been fantastic. I have a state of mind that the Cancer was there so I couldn't do much about that, so my job now is to do whatever I need to do to get through it all. I can't change what has happened but can take care of myself in the future. The hair loss was daunting - but I had my husband shave the head once the clumps were all coming out. I wear a scarf to work and work when I can. The days 4 & 5 are the worst after chemo, so work goes by the way side those days. I've just had the 2nd Chemo treatment this time with the herceptin, not walk in the park but I'm going for the 3rd! I guess one just has to do whatever to get through. You will be fine - everyone on this site is here for you, you will have good days and bad ones, just remember take each day as it comes.

    Amanda     

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  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited December 2008

    tj,

    Give the chat rooms a try....you will make good friends who understand your fears and can help you thru the bad days. Hugs Mazy

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  • saint
    saint Member Posts: 1,877
    edited December 2008

    Good suggestion! I agree with Mazy!

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  • pattyrn212
    pattyrn212 Member Posts: 41
    edited December 2008

    First of all, jump up and take over your medical care!  This is your life.  The more you worry and wait the harder it will be for you to fight.  Don't accept just one doctor's opinion.  It was probably a blessing that the first doctor told you to find another doctor.  You want a doctor who truly wants to get you better.  You want an aggressive doctor but you must be aggressive yourself.  Research, get info about what's happening.  There are many resources for care...but you have to find them.  I assume you are from NW Arkansas so I looked it up myself.  I found this website...www.narti.org   It appears to be for NW Arkansas.  The site states that they work with Highlands Oncology Group for comprehensive cancer care.   It also says that they provide transportation services.  Here is an email for a "patient navigator".. cparker@narti.org  the persons name is Chuck Parker.  Even if you email this person and tell them what is going on...he may be able to guide you to the right facility near you or transportation services.  If I can help you in anyway....please let me know.  Good luck to you and please.....be optimistic.  I have breast cancer too.  Within the month from finding my lump I made the decision to have a bilateral mastectomy.  It was my choice....the doctor offered to do a breast sparing partial resection.  Why?  Just remove them....I don't want to worry the rest of my life that it will be back or in the other breast.  Be proactive.  You will be okay and I'm praying for you to get the best care because you deserve it!  We are your support system!!! Wink 

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  • desdemona222b
    desdemona222b Member Posts: 776
    edited December 2008

    "the BC specialist canceled his contract with me stating no one ever goes to the hospital over a seroma"

    I'm shocked that a doctor would say this.  I developed a seroma the morning after my surgery and had to go right back into surgery again just to make sure the bleeding wasn't more serious...

    I feel really bad for you - my doctors were so wonderful.  I don't know how I could have gotten through it without understanding, experienced, kind MDs. 

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