Long wait

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ladyfighter
ladyfighter Member Posts: 184

Hi ! I have been looking in this website for past month and was very shy to come out until now. I'm deaf but I can read lips. When I was first diagnosed with breast cancer last november from core needle biopsy. I was in shock because I had no one in family on both sides of my Mom and Dad. I was the first one! Worst part is that I canceled my health insurance 3 months prior!!! Biopsy and pathology report cost me over $5000. My husband and I were so confused what to do. Meanwhile we already got plane tickets to go Argentna for a month to spend with his family for the holidays (that was before I found out I was diagnosed with BC). after many days of thoughts and confusions, we came up that I was to get treated in Argentina because my husband's cousin's husband is head of oncology also my hsuabnd's nephew is also oncologist. So for the 2 weeks prior to our trip to Argentina my Sister in law made all the appts as per his cousin that I get all head to toe checked for any cancer other than tumor in my right breast . When I got there , I had 8 tests in 4 days period!!! No question asked only asked for my drivers license and prescription notes from his cousin. I had cat scan, sonogram on both breasts , stomach, heart (all different dr offices ), ekg, bone scan , blood work, xray. All cleared!!! All of these tests taken on me where actual doctors not techs or nurses. They were awesome!!! And I got two opinions from both his cousin and his nephew's boss both recommended same thing about treatments chemo , radiation, and hormone treatment cause I have her2+ and recommended that I get lumpectomy. Cousin recommend surgeon so we met him I fell in love with him I felt so comfortable !! He got me scheduled for lumpectomy the following week! The clinic is like a hotel, beautiful setting! With the radioactive inject to locate tumor and 3 lymph nodes on that morning of the surgery that was the most painful of all tests I had but I toughed it out. I have never been in surgery or put me under to sleep, I woke up with little pain but was extremely happy that my lymph nodes were all clear, margin was all clear ! He did great job doing it, only difference is one cup smaller than other but I didn't care not for now. He prescripted me antibiotic and pain killer (only used one pain pill!) and drainage only for 4 days. I followed up with surgeon every 2 days until end a day before we went back home to states . Cousin the oncologist said I would stay and do chemo for a year with the small amount of $$. Oh I forgot to mention, 8 tests and surgery at clinic for the day all for only 2800 dollars!? We paid cash! It could have easily cost me over 50,000 dollars or more right?? But I wanted to try and do chemo at home because my life is here my dog my house my Mom, family etc etc. it was hard! So when I went back to see my surgeon here in the states (who did the biopsy) to see if he can help me find oncologist who can accept me without insurance. I was so taken back when I saw my surgeon how he wasn't too nice with me because I had the surgery in Argentina instead he would have understood why but he wasn't . I was in tears!!! I was so brave all the past 5 weeks in Argentina during tests , surgery, and being away from my family. My hsuabnd's family are awesome!!! So this surgeon referred me to an oncologist so had an appt the following week (last Monday feb 3). I was soooo nervous !!! Unlike in Argentina where I was so calm (-why? I don't know?). Then met him he was so nice! I bawled and cried I guess it all came out. He was very understanding. We showed him all the tests I had in Argentina but one thing caught his eye was an sample of my tumor sealed in a box that the pathologist saved for me in Argentina . He said he would use that to take to the lab in California (oncotype), we told him we don't gave money to pay for that lab he told me not to worry! So the assistant later told my husband maybe the lab doing for free??? Then upon the result of oncotype the oncologist will tell us what kind if treatment I should get and how much it will cost me, etc. so to this day, I am still waiting for the call from them! And this morning I woke up feeling like shit, colds, sore throat maybe flu? Maybe just allergy??? So will that be a problem with starting of the treatments if they call??? I was brave and feeling positive since my diagnosed with BC in nov 2011, now I'm waiting and wondering and in fears of treatments , am I thinking too much?? But not depressed at all thank god for my anti anxiety meds I have been taking for 7 years (Effexor) it's my life saver!!! I wanted to say I love everyone in here, everyone here is so brave !!! Xoxox for everyone! Thanks for reading!!!

Comments

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited February 2012

    Welcome LadyFighter - You are so lucky to get such wonderful treatment in Argentina. I do hope your oncologist can arrange for treatment for you at home and I hope it doesn't cost you too much.

    ((((((HUGS)))))

    Sue

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited February 2012

    Ladyfighter- Im not her2+ but wanted to welcome you and send you big hugs. Can you get your insurance back? I think, (Not sure) but thought that there was a law passed on pre-existing conditons and ins. company couldnt turn you away? We are all here for you, no need to be shy we are all going through the same thing and are here for each other, for support, advice or just to vent. Please let us know how you are doing.

    Gentle hugs

    Debbie

  • whippetlover
    whippetlover Member Posts: 17
    edited February 2012

    Hello Ladyfighter. You and I have exactly the same diagnosis except my tumour is Grade 2, not 3. I was diagnosed in 2004 and at that time I did not know that I was Her2+. I found that out 2 years later when it was too late to have chemo or herceptin.I had a lumpectomy and radiation. I did take tamoxifin for 2 years and Arimidex for 1 year. I am still here and doing well. You will have better treatment options available to you now in 2012. I hope that you can sort out your problem with our insurance. Is there some free legal advice that you can get?

  • ladyfighter
    ladyfighter Member Posts: 184
    edited February 2012

    Hi!! Thank you so much for writing! Made my day.



    My husband called oncologist office today to find out the update of my oncotype, they are still waiting but great news is that the lab is doing for free for me! I'm starting to like my oncologist now :)



    Yes I filled out for pre existing insurance but it has to be 6 months from when I canceled the insurance. I got about end of march to qualify but lots of money down etc. we shall see. Im going to fill out social security Medicaid cause I'm deaf. Also applying for Pink tie friends



    Whippet lover, how did you found out 2 years after diagnosis about her2? They did the pathology again 2 years later ? Why it is too late for new treatments? But so glad you are doing great!



    I'm still sick not sure if it is flu! I'm all achy! Anyone start treatment when they are sick or you have to be 100% well before starting the treatment ?



    Thanks again!! (((Susie, Debbie, whippet lover , and all the brave ladies !))))



  • Wendyspet
    Wendyspet Member Posts: 246
    edited February 2012

    I'm surprised that you are getting the oncotype test.  I thought chemo was standard treatment with herceptin.  Some ladies here have had herceptin only, but have had to fight for it because it hasn't been tested by itself.  Hmmm, maybe it has to do with your insurance status?  But I think the herceptin was more expensive than the chemo. 

    I sure am not the expert on any of these subjects though, but someone more knowledgeable will probably post.  Anyways, wishing you the best of luck and a short wait!

    I think that if you have a cold/flu, you definitely would NOT start chemo because your blood counts suffer during chemo.

  • ladyfighter
    ladyfighter Member Posts: 184
    edited February 2012

    Thanks wendyspet for the info! I don't know why my onco wanted to have oncotype? When I see him when the results comes I will ask him that. I'm still clueless about chemo, herceptin, TCH (don't even knowmwhat that means ) .



    What kind of treatments did u have? Are u HER2+ ?



    Thanks again , hugs

  • Wendyspet
    Wendyspet Member Posts: 246
    edited February 2012

    I had taxol (or taxotere-I can't remember), herceptin and carboplatin.  That's what the TCH stands for.  I had six treatments, 3 weeks apart, but with herceptin every week.  After the TCH is over, then I started a larger dose of herceptin every three weeks, and that continues until June, which will be one year from my first chemo.  I am Stage I, Grade 3, IDC, 0/2 nodes, but ER, PR and HER2 positive, very close to your diagnosis.  I had double mastectomies, so no radiation was necessary for me.  I also started on tamoxifin about 6 weeks after chemo.

    I hope your cold is better, but if not, make sure your doc knows about it, as well as ANY prescriptions you are taking.  One of the depression meds interferes with tamoxifin, but I think he told me it was Lexapro.  Keep us posted!

  • whippetlover
    whippetlover Member Posts: 17
    edited February 2012

    Hi ladyfighter.  My original surgeon and oncologist had refused to test the tumour (5mmx5mmx8mm) for Her2. It wasn't protocol then in Australia in June 2004. They both assured me that as the mitotic count of my tumour was 1 then it couldn't possibly be Her2+. They also said that even if it was they wouldn't offer me Herceptin  as it was only used in for metastatic patients at that time. Then, when I had a very dear friend pass away from breast cancer (positive nodes and 23 years after diagnosis) she made me promise that I would go to her oncologist to learn a bit more. Off I went and this oncologist suggested that I have the tumour tested for her2 as there were a lot of clinical trials happening. It came back as Her2+++ and I was devastated. She said it was too late to give me either chemo or herceptin and that my prognosis was much worse than if I were Her2-.I waan't able to have the trials as my tumour was < 1cm and I hadn't had chemo! I asked her what she would have recommended if she had treated me in 2004 and she said definitely chemo but maybe not herceptin as there was no research then with small tumours as there is now. So, I have lived in fear for many years thinking that because I hadn't had herceptin I was sure to recur. It hasn't happened and I have met other women who are in a similar position to me who are also recurrence free. Had I had the opportunity to have herceptin I would definitely have it. I'm not sure about chemo as I'm glad that I don't have any side effects that some have to live with. I just wanted you to not feel so fearful. There are many of us out here who have a similar diagnosis to you and are doing well.

    Sorry for the long-winded response! 

  • ladyfighter
    ladyfighter Member Posts: 184
    edited February 2012

    Wendyspet, how was your side effects with TCH? I'm still waiting for oncotype! The wait is diriving me crazy my lumpectomy surgery was on jan 3 so this new oncologist said it can be 60days from surgery ugh?? He knows I'm taking Effexor he said that he usually gives to his patients for the hot flashes so he is aware of it . I went to my primary doctor today for my chest congestion I was worried because I wasn't sure if it was bronchitis or pneumonia because I felt so crappy, it was only sinus and ear infections with postal drip , whew! Im on 5 day antibiotics. I will let my oncologist Monday about me being sick. Thanks!



    Whippet lover , wow interesting what you went through! If all the things they didn't give you back then and you are doing great then why is oncologists giving out more and more dangerous chemos ??? Doesn't make any sense ? And for your beloved friend that lived for 23 years and she probably didn't have any treatments that we all are getting now? I'm puzzled ? Like I said I'm so clueless about everything I tried research and google but sometimes it gets too much for me :( no worries about long response, happy to hear from you guys!



    Hugs to you and all xoxox

  • ladyfighter
    ladyfighter Member Posts: 184
    edited March 2012

    Still WAITING!!!!!!!!!!!!!!!!!! They never got back to me about the treatments!!?? This Saturday will be 2nd month since I had my lumpectomy!! No treatments nothing done as of now. I am starting to wonder! will it hurt me for waiting that long?? is it normal? anyone done that before??

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