New, scared, and sleepy

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    She is so beautiful! I love kitties and good for you for adopting her from a rescue. It is true, wrenn, that animals rescue us. I'm pretty sure she is going to have you wrapped around her finger, uh paw, in no time WT!

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    Would somebody help me out here? Does my Pathology Report indicate that I have or had cancer in both breasts?

    Because what the Surgeon said was that since they had removed the cancer from the left breast, I was clear. He said I could leave things as they are but that I am entitled to a dm if I want one. I said I do.

    I thought it was cancer in left breast only.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    You have stage 0 cancer or DCIS on the right, and invasive cancer on the left. Some call what is on the right pre-cancer. True DCIS will never be life threatening. Going forward any treatment will be mainly directed toward addressing what is in the left breast since it is more concerning than what is in the right. Do you know when you are seeing the oncologist? Any word from the social worker?  I hope Miss Claudia is doing well and is settling into her new home. I'm glad you have her to help you get your mind off things. How are the allergies?.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited July 2014

    How are you doing, White Tiger?  I think if I were in your shoes, I would want a BMX too. Just take it all. But it's a tough decision for sure.  

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    I'm doing terrible, sorry to say. My health is the same, don't worry. But the surgery has been cancelled and I don't know who my oncologist is and I don't have a surgeon and my original plastic surgeon is not responding.

  • wrenn
    wrenn Member Posts: 2,707
    edited July 2014

    was there a reason given for the surgery being cancelled? Is it cancelled or postponed? Can you ask your GP what is going on and who your specialists are?  Sorry things are difficult right now.  Take care.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    My plastic surgeon assigned me a surgeon for the dm at Hospital #2. One trip return to Hospital #2 by taxi is $100. I can't do public transportation which, in any case, is 2 hours one way.

    I did the pre-op but to expect me to come up with another $200 the same week (inject colours & dm) was too much. The surgeon had assured me it was a 20 minute ride. It's an hour. When I asked his secretary if there was another way, she put me on hold, came back and said that the surgeon said that if I don't like it I can get another surgeon. So I cancelled the surgery, because I have no way of getting to the hospital.

    I have emails into my plastic surgeon's secy but no answer. I think maybe he's "off the case" or something. Hospitals have their rules. 

    I don't know the name of my oncologist, never met him/her.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    Also, my GP is out of the loop. I started this myself with a referral from my sister-in-law for breast reduction. My GP is not active in my care. I see her once a year for prescription renewals. I'd rather avoid her.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    Any word from the social worker? I wonder if there is a medical transport organization in your area. Sorry WT. Sometimes it is one step forward one step back. Hang in there. 

  • wrenn
    wrenn Member Posts: 2,707
    edited July 2014

    In Vancouver there are volunteer drivers to take cancer patients to appointments. We also have the option of choosing which hospital we want to be at and then can be referred (by GP) to a surgeon with privileges at that hospital. You might have to be in touch with your GP to act as a hub.

  • wrenn
    wrenn Member Posts: 2,707
    edited July 2014

    i would contact the Canadian Cancer Society and ask about transportation

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    Nothing from the social worker. I think that request got cancelled when I cancelled the surgery, so I am probably not going to get a social worker.

    I have no doctors at all now, except my GP, who isn't part of this, but I guess she will be. I'll see her next month.

    For transportation, what we have here is Paratransit, run by the bus company. They charge one bus ticket no matter how far you're going, and it's door-to-door. I applied years ago and they turned me down but I'll apply again. I've already got the form. It takes 6 weeks to process.

    I have a CT scan Monday, unless they cancelled that too. I guess I'll go through with it, and the blood tests 2 days later. That would complete all the tests they wanted. But I don't think there's any doctor to read the results.

    Oh and they want me to see a psychiatrist. I have autism & PTSD. I did not behave well during the 48 hours I spent in hospital for testing, but that was because they withheld my psych meds. Psych patients have no credibility at all - they see the word and I become a non-person to be gotten rid of. A person with no rights.

    As for my GP, she's in a Community Centre and accepted me because she was obliged to - there's a quota of psych patients and I'm part of hers. She's a responsible doctor but it's not a good relationship, can you see that? 

    I think those surgeons have tricked me into keeping the breasts that they gave me. I'm very angry. They don't think I should decide? They want a psychiatrist to evaluate me??? 

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited July 2014

    WhiteTiger, your PCP is probably a great resource for navigating through the morass you're slogging through.  Your surgeon, as normal procedure, will have sent your records to her, so she will be aware of your surgery and the issues that have arisen. Chances are she is aware of a volunteer organization that provides rides to and from local hospitals; you cannot be the first patient to need transportation.  I don't see any harm in a psych consult. Considering that you're not thrilled with your primary doc, perhaps you will mesh better with the psychiatrist and, in future, renew your Rx's through him or her. 

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    Thanks for your response, but what's a PCP?

    The psych eval I'm avoiding is the one where you sit with a psychiatrist that you've never met before for less than an hour, and then get labels stuck on you, and probably your meds changed (mine work fine). And you never see that psychiatrist again. You just carry the labels and cope with "flavour of the month" meds.

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited July 2014

    Sorry.  PCP is primary care physician.  Nobody wants that kind of consult!  Lots of psychiatrists are lovely, warm, caring people who really enjoy working with people whose processing is a little out of the ordinary.  Probably there is someone in your area who particularly enjoys working with people with autism and/or PTSD.  I guess the trick is to chase down the correct referral.  Maybe your primary care?  Maybe the local hospital?  If you belong to a group or network, maybe others can refer you?  To tell the truth, in my humble opinion, a new cancer diagnosis is such a game changer, we probably all should have a pysch consult, just to reassure us that maybe our emotions and reactions are kind of out of whack, but that this is a normal-ish reaction to the trauma of the diagnosis and treatment.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    Hi White Tiger - When you go for the CT scan, find out where the results are being sent. That will more than likely be your oncologist. You should contact him or her as soon as possible. The really important thing the surgeon need to do is the node biopsy. The oncologist needs that for staging and treatment. At this point there is probably no great hurry to get the mx, as the docs have said, the bad stuff is gone via the reduction, you can have the dm later, any time. You need to get started on the other treatment though. 

    What if for now you do just the node biopsy, the procedure is easy, recovery is a snap. The docs get the info they need. You start getting the treatment you need.

    Do contact your GP. She can be your advocate. She can help navigate things.

  • wrenn
    wrenn Member Posts: 2,707
    edited July 2014

    great advice above. My oncologist said that most of his patients have to see a psychiatrist because breast cancer is such a nightmare.  I was referred to one at the cancer agency and she is great.  

    I have PTSD and although i think some of my normal anxious reactions might be written off because of that diagnosis i push for answers calmly and assertively so they can't just write me off. Lashing out can be temporarily be put on hold and you can take them all down once you are done treatment since it doesn't benefit you to write them all off at this point.  Get your treatment happening amd worry about the mastectomies later. 

    You are right to be offended but focus on what needs to be done now and how to make it happen. Otherwise your indignation backfires and puts you in jeopardy.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    Good news, I think. They've referred me "back to the Clinic" to get another surgeon. Maybe they were just waiting to be sure I wasn't going to change my mind.

    I think if I don't do both procedures together I'll never do the bm.

    I'm getting really hairy. I think I was relieved when we called the whole thing off. I can put up with these boobs, the lymph nodes probably don't matter, so it's over and I can go back to having a life. But no, we're on-going again and I'm hysterical inside. I don't want to go back. I don't want to go to a hospital. I don't want to be trapped with residents and nurses who aren't telling me the truth and won't give me my psych meds. 

    Remind me never to rob a bank - if that's how I react to hospitals can you imagine what I would make of prison. And if hospitals are over-crowded, how very very sick everybody must be!

    I don't wanna go, i don't wanna go.

  • Isabelle123
    Isabelle123 Member Posts: 1
    edited July 2014

    well here is my. Story on. June. 30th I went for a mammo, of course.  The tech said u have to have more pictures taken.  Also had ultrasound has microcalifications with papiloma.went. Fora vacuum assisted biopsy it. Came back B9 but the surgeon wants to take them out.  Well of course my luck the surgeon was on vacation for 2 weeks.   Finally saw her this past Tuesday. She is. A renowned dr at At NYU, her staff was quick to run off her famous patients like Rosie ODonell.  Honestly who cares after waiting for. 2 hours to see her.  My biopsy came back vacuum assisted B9 but she still wants to take them. Out.    Dies. Anyone know if vacuum assisted biopsies are accurate.  ttb002@aol.com if have any answers.going in for removal of microcalifications on 8/4,has anyone been diagnosed with cancer from a vacuum assisted biopsy.  Scared.th

  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2014

    i will tell you a biopsy will tell you one thing. if it is, or if it isnt. its not the biopsy per se, but what the pathologist who does the testing and looking at the tissue that was removed, who will write the report to the doctor who ordered the test. he or she will say, cancer or not. this is the hard part for you. waiting is tough, but for me biopsys were harder for me than waiting for the words, but i was pretty sure it was cancer for me so i was not shocked. i see you have only one post, so i will pm you, just to tell you that i responded.  sorry that you may be joining us, and i pray that you get an all clear.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    I just got back from my CT scan. So that's over, what a relief. 

    There was a surprise in my mail box when I got back - a letter from Hospital #2 that I was on their surgical waiting list. I'll have to call them - I am never going to Hospital #2 again. I've only told them that a zillion times.

    So if I hear anything, I'll tell you but as far as I know, I get one more blood test and that's it, until they figure out surgery. I forgot to ask where they were sending the results of the CT scan - it took place at Hospital #1 but that doesn't mean anything.

    I'm finished with this medical system. If I die young at least I'll die free.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    Today I filed a complaint with the Ombudsman of Hospital #2, explaining that it is inaccessible to me and requesting to be referred to one of the hospitals downtown. 

    I did the CT scan yesterday and tomorrow is the blood test. Then it's finished until they tell me when (and hopefully where) is surgery.

    Did you ever loathe and despise your doctor(s)?

  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2014

    maybe disgruntled, extremely..

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    wt - I hope you are able to find a medical team that works for you. Sometimes it is not the right fit. I hope the meeting with the oncologist happens soon and he/she is able to give you your treatment plan. Take care.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited July 2014

    Well  I don't know what's going on. I went to the community health centre for my blood test and their computers do not register my surgeon! All the hospitals and health centres use the same database, but my surgeon doesn't show up. So the lady typed his name in. I'm liking this guy less and less.

    I called his office and left a message for his secretary telling her about the blood test and asking for name of oncologist.

    It's like none of this is real, you know what I mean? They send me here and there on errands but none of it results in anything. I feel like the invisible woman.

  • wrenn
    wrenn Member Posts: 2,707
    edited July 2014

    i think all of this would be easier if you coordinated through your GP. He/she is the hub and can advocate on your behalf and set you up at the hospital you choose with physicians you choose.  I am not able to do any of that on my own.  Referrals have to come from my family doc and i let her know who i want to see and which hospital i am ok with or not ok.  I understand how frustrated you must be but you might have to cave and let your GP make the arrangements for now.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited August 2014

    I saw my GP today for 15 minutes. She offered to chase this thing down for me but I want to give Plastic Surgeon a chance to answer my email of yesterday. GP said Okay but call her by tomorrow. Good heavens. I didn't realize I was letting this slide.

    Plastic Surgeon did answer; he referred me to the Breast Clinic at a big hospital downtown (Hospital #3); they will "triage the referral" and phone me. So I'll tell GP tomorrow that we are, as usual, waiting for a phone call.

  • WhiteTiger
    WhiteTiger Member Posts: 116
    edited August 2014

    I have something to ask all of you.

    Did your body reshape itself after surgery?

    It seems to me that mine did. The weightiest part of me is now my hips, and my belly seems to have become very round and flabby. I gallumph when I walk. And most important: I have a dreadful pain in my left side. It's like a stitch from running although I'm a couch potato. I've had it for a solid week; it even disturbs my sleep.

    But today, when I went to see my GP, I stuffed myself into what are now tight jeans. I got lost and had to walk a bit. The pain disappeared. I didn't mention it to the GP because it was gone. And it didn't come back until I came home and took off the jeans. Now it's back full force.

    Is this a common thing? Is my body shuffling itself around? It is obvious that I'll have to lose a lot of weight but the scale shows the same. It's odd that my breast reduction got rid of the chronic pain in my lumbar area but this stitch in my side has created a pain across the middle of my back.

    Is anybody familiar with this sort of thing?

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    HI WT - Good to hear from you. I'm so glad your GP is in the loop and ready to help. I can't help about the shuffling. I am near menopause and everything is naturally shuffling for me :) Especially my waist. It has expanded quite a bit in the last year!

  • Powermom98
    Powermom98 Member Posts: 9
    edited August 2014

    WT, just want to let you know that i have been thinking of you and am pulling for you as you navigate through the medical maze. 

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