New, scared, and sleepy
Comments
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WhiteTiger, I can only speak for myself but I was never offered the option of BMX. The docs here apparently believe it's best to keep the 'healthy' one. It has been mammogrammed, ultrasounded, PETscanned, and biopsied, but declared 'clean' so there it stays.
I did not find this wonderful site until after my surgery. But I have to admit to feeling some regrets after reading about cases where some cancer was found in the 'other' breast that was supposedly being removed preventively. Although that does seem rare!
Another thing to consider. I don't know how rare or common this might be. But I had some complications from my surgery that means I still have, and probably always will have, some pain which makes wearing a bra unpleasant. And since I still have one breast, I have to wear a bra - out in public anyway. I just have to suffer. If I'd had both removed I would never have to wear a bra again.
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white tiger, which province are you in? Here in BC my surgeon told me her job was to tell me of all of the options and i had to pick one. She said they must be sure not o lead your decision but just to be sure you are confident about your choice. You do sound confident so i can't see it being a problem. None of this is easy so i wish you strength.
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Hi Jennie, thanks for that. My cousin had one breast removed and then, two years later, the other. That's the sort of thing that I think is bonkers. Of course I never said that to cuz. And I certainly can't ask her now. But all the wonderful folks here, like you - that's where I might get a sounding-board. So do I gather correctly that if you had known, you would have done both?
I'll tell you, one thing I am absolutely sure of is that I'm never wearing a bra again! Ever! Dad-blasted, ornery, too-tight, too-loose, twisty, gouging symbols of femininity! Well that's not feminity. It's a creation of feminine norms by a restrictive society. Do I mean patriarchal? No, I mean Cosmo et al.
I'm already never wearing a bra again, because my reduced breasts are small and don't wobble (yet) but I'm aware of them and I don't want them.
I hope you don't mind my sounding off.
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Hi Wrenn,
I'm in Quebec. The surgeon that I spoke to yesterday said that what he was obliged to do was remove a bit of lymph node but that I was entitled to a double mastectomy (not sure of which initials to use) if I want one. They already knew I want one. I wanted one since I was eleven years old.
When I told him I want that, he went into a song and dance about where the nipples are and he's going to cope with that and he'll have to use hard stitches to be removed. But later I realized he was talking about the placement of nipples - of which I want none!
I'm a real crabby apple, aren't I?
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hopefully he will listen to you and you will end up satisfied with results. It's a lot to deal with. Take care.
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WhiteTiger, I feel fortunate. The local hospital assigns each cancer patient a "nurse navigator". She is there to answer questions, make appointments, follow-up, meets me at the appointments, advice, and a shoulder to cry on. She is a BC survivor as well. She is priceless to me.
I have stage 1 EDC, lumpectomy and node biopsy on July 2. I have a Md appointment tomorrow AM. The navigator will be there.
Ask questions, write down the answers, write down questions for the next appointment, dont let them get away without answering. Its your body,you health, your life.
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That's not what's happening to me at all. I'm afraid of them. They yell, they contradict each other - kinda like the TV guy blaming the Cable guy who blames the TV guy etc. Big smiles, booming voices. And lies. When I was in hospital for 48 hrs tests, I was fasting. But nobody told me that. They just kept saying I slept through mealtime.
Then there was the appointment last week, which I thought was *instead of* the morning appt the same day. When I asked why she said it was imperative I be followed closely by an oncologist.
Now I think I had one AM appt and one PM appt, but the receptionist said that I missed the morning appointment. I said it was instead of, and she did that snitty receptionist no response thing. When the doctor showed up (2 hrs late) I thought he was the oncologist but he said No, he's the surgeon. So I think that morning appointment was when I was supposed to meet everybody and get my results.
I have no results and no oncologist, except on paper. The pathology is coming by mail - I wonder if I'll understand it. The surgeon is doing a double mastectomy and unpleasant about it - he says we could leave the breasts as they are, they're clear, but I am entitled to a dm. Well I wanted a dm in the first place.
And I don't have a friend in the medical community anywhere. Asking questions doesn't work - "not my job" is the answer.
I'm very very depressed. I have to do the whole thing all over again, the pre-op, the residents (teaching hospital), the surgery, the overnight. No predictability anywhere. And the option is keeping what I've got, which I hate, and which I think (no matter what the docs say) is an invitation to more cancer.
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why did they admit you for two days testing? what tests? and why the do- over, and another overnight? they don't keep you overnight.
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..and if you haven't any cancer, how can you get more? When do you get your pathology report? i am just trying to understand. What did they tell you? They can't just schedule another surgery, without explaining to you what the problem is...
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It started as plastic surgery for breast reduction, which is free here if you have bad backache, which I did. When the plastic surgeon went in, he found breast cancer. He cut out as much as he could. He came to me in post-op and told me and said they needed tests, which they could do all in a row if I would be admitted and I said yes. Especially after I asked him if that thing on the back of my neck might be cancer and he said maybe. So I got admitted.
The pathology report: that was the meeting I "missed" in the AM, on the same day of another meeting in the PM, which I thought was to replace the AM mtg. I know the AM mtg with to get the test results but when they offered me the PM mtg I thought they were changing the time of the meeting. Now I'm wondering if it was 2 different meetings.
The PM mtg was with a surgeon. He said he had to go in and get a piece of lymph node. He said I'm entitled to double mastectomy if I want. (I want.) He said , "Why did he put the nipples there???" How would I know? I didn't want nipples.
The pathology report is coming in the mail.
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I don't trust doctors. The doctors say I'm clear in the breast area. They're not sure about lymph nodes. They're doing an MRI, after all those tests they already did - the donut, the one they shove you in face down (I think it looks inside your bones), and a regular chest x-ray.
The thing is, doctors are wrong. They told my cuz her right breast was clear - 2 yrs later, chop. No fair. Take them both, now. I don't want them. I never did want them. My time has come. I have rights. Chop-chop.
The glitch came when I started with a plastic surgeon, but we didn't know about the cancer. We were doing the freebie reduction.
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The testing (already finished) was 2 overnights (at my option) and no food, and everybody lied to me and said I had slept through the food. They are untrustworthy. Why didn't they just say "fasting"?
This time it's one overnight, at my option, because I am isolated and have no one to take me home and stay with me. Also this time there will be drains and I don't know how to do that, much less the first night when I will be wonky.
It bothers me a lot that my brother & sil live 2 miles from that hospital but wouldn't lift a finger and there's no point in asking. So I'll take the overnight and the nurses can do the first batch of bandage changing and drain fixing etc. With any luck they'll even feed me.
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Thank you for talking to me. It's been a long long long weekend.
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maybe you can take notes and ask questions so you actually know what is going on. A lot of this stuff sounds very vague and confusing so taking notes and asking for reports might help.
I don't think you can generalize about doctors from one anecdote and i think it is important that you trust your doctor. I wonder if some medication is making you interpret things like nurses shrieking etc a little bit hightened?
Cancer is scary and anxiety is common. You can ask to he referred to someone to help with that and make it less stressful and clearer as far as understanding what is happening.
Wishing you a smoother ride ahead.
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hi white tiger - I'm sorry things didn't go smoothly last week. Do you have a friend or relative who could come with you to appointments? I made DH come with me because I was in no condition to remember anything. Even a tape recorded might be helpful. When you get your path report there are ladies here who can explain it. If there are nurse navigators like raidergirl mentioned in Canada that would be helpful. It is very difficult to do this on your own.
The chance of recurrence is the same whether you have the mx or just stick with what was essentially a lumpectomy. The MRI should reveal if everything is gone so you could still change your mind.
Those little blue pills are very useful in times like these. Call the nurse if you need some. I told my PCP I was afraid to get addicted. He said "I don't care if you get addicted. You need them" I did and when it came time to wean off I did.
Thinking of you and hoping things get clearer soon.
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Wrenn, you don't believe me! One incident? It was non-stop including pre-op. Nobody explained anything; they kept wheeling me from place to place - I didn't have my glasses, nevermind something to with. As for being stoned, I should have been more stoned. I told them I have autism and PTSD. They withheld my psych meds - I had total screaming meemies. PTSD-terrified *plus* all that horribleness? Oh, and autism (high-functioning) = hypersensitivity to things like sound. So of course everybody was yelling at me. And the more I tried not to melt down, the louder they yelled.
Should they know how to handle autism & PTSD. Yes. Lower the voice, lower the lights. Is that so hard? And tell me the same story every time.
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hi farmerlucy,
No, I'm completely isolated. No a soul. I did hire somebody from an Agency to come with me, but they frisked her, demanded credentials, confiscated things out of my purse which she was holding (gravol) without telling me and ordered her not to tell me. It was when we got home that I found out why she seemed so down. They forbade her to go with me to tests and ordered her to sit in my room in a corner and not speak unless I spoke.
re nurse navigators - I wonder. At one of the hospital appts (it's all a confusion), I went into Room 4 as instructed and a guy snuck up behind me and bellowed, "My name is xxxx, I am your nurse." And I yelled, "Don't yell at me!" For heaven's sake it's lucky they didn't have to scrape me off the ceiling. Don't they know not to sneak up on somebody with PTSD? But maybe he was supposed to be helping. I don't know; never saw him again. Didn't really want to.
Don't they make female nurses any more?
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Ooops, they did the MRI on June 16. What they're going to do on July 23 is a CT scan. the MRI was face-down and the CT scan will be face-up, do I have that right? Whatever, I did a big face-down in a tomb-like thing that made loud noises etc.
It must be my fault - with 2 appointments on the same day, I thought the first was cancelled in favour of the second - so I guess I skipped my results. Also meeting my oncologist.
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You ask why they are still testing. I think because I had a cancerous-looking thing on the back of my neck, which is when he said "full work-up" and wanted me 2 overnights.
They still want to look at my liver but I'm too fat so they have to take my word for it.
Maybe they couldn't see the lymph nodes because I'm too fat. I dunno.
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WT - I think you are doing a wonderful job of getting through things considering all the challenges. I wish you could find one advocate who could walk with you in person through these difficult times. It does sound like a CT scan they've scheduled you for. OK - Here is a little piece of the puzzle that might fit (complete guessing on my part). If the doc said your breasts are clear and you've already had the MRI and he has the results - that must mean they ARE clear. That would be excellent.
What about writing a little summary of the best way to interact with you considering the PTSD and autism that you could give to the nurses. That might help them understand where you're coming from. My DH always brings a written summary of meds and often a written summary of symptoms to give to the doics. There is something about things being written down than aids understanding.
They can see the lymph nodes in the MRI, but they still have to take out the sentinel node to look at it under a microscope.
Can you send an email to the doctors office explaining the mix up, your challenges, and ask them to reschedule the appt as early as possible. In the states we call it making accomodations for challenges people face and we are required by law to make said accomodations for certain conditions. I am certain the docs and nurses all want to help, they just don't understand your particular case, especially because the cancer was discovered in an unconventional way.
Is there a social worker at the hospital who could assist you?
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good job, farmer lucy daisy.
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Yesterday I did pre-op at Hospital #2 for the dm.
When I got home the Pathology from Hospital #1 was in my mail box.
What Hosp#1 and Hosp#2 have in common is the Surgeon for dm.
At Hosp#2 I asked for a Social Worker affiliated with the hospital and the nurse said she'd ask for one who would call me.
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Hi White Tiger - Good news about the social worker. I've been thinking about you and hoping you're getting some answers. Wishing you a peaceful day.
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Jennie: I am "lopsided" as well. Know this, there are laws that your insurance company must cover a procedure to make your breasts "the same." (not intended as a legal description!!). At least, that's how I understand it. I feel your pain about the bra. Problems come up that are hard to understand by people who haven't lived it. I've considered removing the other breast as well...then I chickened out. OK, I'll just say it...because I didn't want to lose the nipple and its...sensation. It's about my favorite part of my body. There, I feel like I just said "I'm "whatnow" and I'm a nipple-aholic." Heehee. But it is quite a pain in the arse even to walk to the mailbox in a T-shirt when it is SO obvious without a bra. And "normal" tops? Fuggetabout it. It's not like I want to show cleavage. But anyone with zero or two breasts can't know what happens when, even when wearing a prosthetic, we can't wear shirts that are lower than the clavicle. Bending forward can cause a clear view all the way to the navel too, when the prosthesis falls away from the body. Yes, yes, special tops and bras, prostheses that stick to the chest (I have one)--it's just hard to explain.
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White Tiger: I'm glad you'll have a social worker on your side for this procedure. It is indeed a horror story that you have family nearby that cannot or will not help. It's easy for anyone to be confused with all the terminology and dates and numbers and people and procedures. I went through all my diagnosis completely alone and I probably didn't "catch" everything. So you let that social worker help you, because we all need help sometimes. Maybe she can help sort through this confusion.Best to you.
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farmerlucy - Could you tell me,, what does this mean?
"The chance of recurrence is the same whether you have the mx or just stick with what was essentially a lumpectomy."
I'm sorry to be slow but how could I have a recurrence of breast cancer if I have no breasts?
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it's impossible to remove all of the breast tissue.
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Don't I stand a better chance if I get rid of as much breast tissue as I can? Honestly, if I'd be happier without them, why don't I get rid of every shred possible? And I am entitled to that, per the surgeon.
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apparently statistics show no difference. I had both mine removed for pyschological reasons (you betrayed me, you're done) and for balance. My doctor said her job was to be sure i was confident about my decision before she would proceed. She knew i was. Sounds like you are too.
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WT forgive me I think I quoted that wrong. I think the risk of distant recurrence is the same for either. I just checked the main pages of BCO and it says that the rates of local recurrence is a slightly better with Mx. I'd link it, but I don't know how on my IPad. Go to the main page of BCO, pull down on the surgery header and there is a full discussion re: Mx vs lumpectomy. It is still possible to have a local recurrence in the little breast tissue that remains. This is not extremely common, but it is possible. It is impossible for a surgeon to remove all the breast tissue. Distant recurrence is where the breast cancer moves to another part of the body. Systemic treatments like chemo and hormonal therapy are designed to stop any wandering cancer cells before they can set up shop somewhere else in your body. Your oncologist can go over your recurrence risk. Hopefully your oncologist has set up another appointment for you.
I believe if you choose the lumpectomy they'll probably want you to do radiation treatments.
Take care!
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