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Author Topic: So I was literally a patient at a cancer center today.  (Read 818 times)

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Offline bpadilla49

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So I was literally a patient at a cancer center today.
« on: January 21, 2014, 01:57:24 AM »
Yep, that's right. You read it correctly. I was referred out to a hematologist at a cancer center by my gastrointerologist who saw abnormal blood work. My platelet count has been a little low for the past few months, and he wanted to get it checked out by a hematologist "just in case".

So naturally, my doctor told me my blood work was abnormal and I am a patient at a cancer center now, I must have cancer. Right?

Well the doctor came in and went over ALL of my blood work and ultrasound with me. She said that there is nothing from what she can see to suggest cancer or even start looking for it. But she needs to rule EVERYTHING out in order to diagnose me with an autoimmune disorder called ITP. ITP is where your immune system attacks your platelets and destroys them.

So she said the "next step" is to order a LARGE series of blood work to rule out other autoimmune diseases - including LUPUS and RHEUMATOID ARTHRITIS!!! Is that all? Oh no....that's not all!!!

AFTER THAT - she said she'll want to do a BONE. MARROW. BIOPSY. (holy cow, freak out session begin in 3...2....1....now!).

Anyway, I'm doing surprisingly well. My husband came with me to the appointment, and with all of the tests that I've already had done, coupled with the fact that the doctor said she doesn't see any "red flags" for cancer, or anything to cause her to look for cancer (my blood work is fine, other then my mildly low platelet count), I'm doing pretty good. Of course this will probably change within the next 2 weeks....why 2 weeks you ask? Oh, that's how long I have to wait before I get the results of all of this "specialty" blood work.

Yay me.

Praising God for..um..good news today? Yes, good news today. Hopefully not cancer. Probably not cancer. Not cancer. (Praying I don't have cancer!)

I'll post updates as I have them. I actually have to wait to get the blood drawn because I'm sick with a cold/sinus infection. So once that clears up, I'll go and get my blood work done...and then begin the 2 week wait.
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Offline thesilentdiva

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Re: So I was literally a patient at a cancer center today.
« Reply #1 on: January 21, 2014, 03:24:14 AM »
Lord I hate those waits. though ur doctor is just doing them to rule out everything else so I wouldn't be worried too much, esp if u not showing other symptoms. I always say, it's better to check everything and know than not know. but remember she said "nothing to suggest cancer or to even start looking for it". remember those words to keep at least a lil calmer
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Offline marc

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Re: So I was literally a patient at a cancer center today.
« Reply #2 on: January 21, 2014, 07:57:26 AM »
It is very positive that there are no indications of cancer. Please keep us updated and good luck.
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If you're going through hell, keep going.
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Offline chasingdogma

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Re: So I was literally a patient at a cancer center today.
« Reply #3 on: January 21, 2014, 02:09:11 PM »
My mother had ITP and years later was diagnosed with RA. I believe both are auto-immune disorders. For her, she had her spleen removed and that effectively cured the ITP.
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Offline eva1227

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Re: So I was literally a patient at a cancer center today.
« Reply #4 on: January 21, 2014, 03:38:59 PM »
I was diagnosed with ITP several years ago. I also now have RA, but my platelets have been fine for years. The reason the hematologist is in the cancer center is because rarely do you find a hematologist that is not also an oncologist as well. I was scared also when I went the first time, but the doctor reminded me that I'm not there for that reason.

Most people rebound from ITP. Sometimes it is an acute case that can be caused by a virus and takes time for the platelets to rebound. My doctor said mine was caused by a bad pneumonia I had a few months earlier. You will probably be prescribed prednisone and that's all.

Eva
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Offline karachondria

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Re: So I was literally a patient at a cancer center today.
« Reply #5 on: January 21, 2014, 04:44:16 PM »
My mum has had RA since she was 19. She's now 47 and still going. Good luck I'm sure you don't have cancer!
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Offline bpadilla49

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Re: So I was literally a patient at a cancer center today.
« Reply #6 on: January 21, 2014, 05:40:23 PM »
Thanks guys. My doctor has HORRIBLE bedside manner and does NOTHING to reassure me what.so.ever. My husband even mentioned that every time I tried to reach out for comfort or reassurance, she deflected with "well, your liver is connected to this, and this is connected to that, and I once had a patient that..." ect.

She did tell me that if I do have ITP that no doctor would even touch me with my platelet levels. She said they're barely outside of the normal range, so they wouldn't prescribe me any meds right now because the side effects of the medication are much worse then my platelet levels. She said after all is said and done, and if I do have ITP, she'll refer me out to a rheumatologist anyway (no idea why) and then just have me come in for blood draws once every few months.
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Offline bpadilla49

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Re: So I was literally a patient at a cancer center today.
« Reply #7 on: January 21, 2014, 05:42:00 PM »
Chasingdogma and eva1227: How did you/your mother get the diagnosis of ITP? Did you/your mother need a bone marrow biopsy?

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Offline eva1227

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Re: So I was literally a patient at a cancer center today.
« Reply #8 on: January 21, 2014, 06:03:22 PM »
I was noticing a lot of bruising on my thighs. I had some blood work and my platelets were at 23!! They should be 140 or higher. By the time I got to the doctor they were even lower. Even with those numbers, the hematologist was great. he said to me, if I thought you had anything serious, you'd be in the hospital right now!
After one week of prednisone my numbers were at 69 and by week three they were at 400!.  I was on prednisone for about three months and I've been good ever since (knock on wood)
Now eight years later I was diagnosed with RA. But I knew that was coming for a while. It just took a while for my Rheumatoid Factor to finally turn positive. But I am doing fine. I get blood work every three months and my platelets have been fine.

Stay positive, and if you don't like the hematologist find someone else.
Eva
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Offline bpadilla49

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Re: So I was literally a patient at a cancer center today.
« Reply #9 on: January 21, 2014, 06:20:08 PM »
Eva - how did your doctor diagnose it? Did you need a bone marrow biopsy? That seems pretty invasive to me. ESPECIALLY since my spleen isn't swollen (had abdominal ultrasound last week), my white blood cell, red blood cell, hemaglobin, ect is ALL FINE. And my platelet count was at 129. Over the past few months, it'll show as normal, then drop to 132, then normal, then drop to 129.
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Offline eva1227

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Re: So I was literally a patient at a cancer center today.
« Reply #10 on: January 22, 2014, 11:13:59 AM »
With numbers like that I think a bone marrow is pretty invasive. I did not have a bone marrow. If my numbers did not go up to with the prednisone than I would have needed one. 129 and 132 are barely outside of normal. I'm not a doctor, but I would definitely want a second opinion before having a bone marrow.
How did they find the low numbers? Were you sick? My spleen was never swollen. Please, please never let them talk them you into having your spleen removed as a cure. It rarely cures ITP. If ultimately you are diagnosed with ITP, I will give you a website that will give you great information and great people to talk to. They were great to me and helped me tremendously. You can PM me if you need to.

Eva
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Offline chasingdogma

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Re: So I was literally a patient at a cancer center today.
« Reply #11 on: January 23, 2014, 03:58:04 PM »
Chasingdogma and eva1227: How did you/your mother get the diagnosis of ITP? Did you/your mother need a bone marrow biopsy?
I don't remember her getting a biopsy. I know she discovered it because she kept bruising really bad and her periods lasted much longer than usual. It took quite a few months for the doctors to diagnose.
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Offline bpadilla49

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Re: So I was literally a patient at a cancer center today. - Update
« Reply #12 on: February 15, 2014, 12:39:37 AM »
So, I went back to get my test results. This doctor takes FOR.EVER. and I waited 2 hours before I actually saw her. So in the meantime patients were coming and going, phone was ringing off the hook with talk of hospice and transfusions and chemo. By the time I got back into a room, I was in tears, my pulse was 141! and the only thing I could do was sing Jesus Loves Me (my 3 year old son and I sing that together every night as I tuck him in, so it brought comfort when I sang it. Not just for the lyrics themselves, but also thinking about tucking my son in at night - my favorite time of day....lol for multiple reasons..).

So the doctor came in and I reminded her that I have an enormous cancer phobia. And she says "Well, you don't have cancer. Nor do you have lupus or rheumatoid arthritis." She noticed that one of the tests came back positive for prolonged clotting time. She explained that my blood takes longer to clot then normal, so we needed to do more blood work. She wants to find out why. So she tested me for hemophelia, which is more common in men then women, but she said when women have it, it's usually a milder form. And she also tested me for Von Willebrand disease - which is where your blood takes longer to clot and it could decrease your platelet count. For both of these diseases there is nothing much you can do, other then tell your doctors about them before going into any type of surgery.

Also, I have a platelet antibody, so my immune system attacks and destroys my platelets. My doctor told me that my platelet count could very from day to day, and we'll just keep an eye on it. No biggie.

She didn't ONCE mention a bone marrow biopsy - Praise God! What a good appointment. I have another one in two weeks to go over this new blood work, and I'm already dreading it. I HATE going to the cancer center and sitting in the waiting room with cancer patients. My anxiety goes through the roof! Literally....to tears.
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Offline mta214

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Re: So I was literally a patient at a cancer center today.
« Reply #13 on: February 15, 2014, 07:14:21 AM »
As someone who is currently going for medical testing and waiting for results, I can definitely understand your anxiety.  It can.be extremely overwhelming!  Try to focus on the fact that the doctor told you that you don't have cancer.  That is VERY good news!!  Good luck with the other test results.
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Offline MorningGlory

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Re: So I was literally a patient at a cancer center today.
« Reply #14 on: February 15, 2014, 10:18:26 AM »
Thank you for sharing your story with us and the good news! This types of posts are good for us HA sufferers, and when you follow through with the full story it's extra appreciated because it shows us that so many things can seem catastrophic, but we shouldn't jump to conclusions because it's unlikely something serious.   :winking0008:
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