Frustrated, Scared and Just Sad

lisajones4 · 07-21-2008, 03:55 PM

Hi. I had posted a few weeks ago that I was having a lot of nausea throughout the day and sometimes at night (Diagnosed in Oct. 2005, Stage IIIA, HER2+++, ER/PR-). I spoke with my oncologist and did a brain MRI. Thankfully that was clear. This was followed up by my three-month check up with blood work. All of which came back great. My red and white were the best she had seen in a long time.

I called again last Thursday to let them know what I was still experiencing this nausea. They suggested I contact my OBGYN. Could I be pregnant? I am 38 years old and have had irregular periods since my third round of chemo. I have taken three pregnancy tests in the last week and they all have come up negative. The nurses in my OBGYN office think I am crazy. I spoke with one who was very rude today. None of them know my history. I love my OBGYN, but I can never talk to her in person.

I am just so sad, frustrated and scared. I just don't know what to do and who to talk to. I just want to cry. Thanks for listening.

chicagoetc · 07-21-2008, 04:18 PM

I don't think you are the only one struggling with nausea and looking for an answer. I had an MRI test that came back fine. My labs came back good a week ago. My oncologist said this is out of his realm of expertise, so...I'm scheduled to see a neurologist on Friday. I'm not confident that this will help find the answers. But its the only next step I know of. [Anxiety/stress can definitely play a role but I don't think ongoing nausea is totally due to that.] If I were you I'd take a deep breath, figure out who you want to ask what, what professionals you trust and tell them what's happening. Then followup as you can. [At least then different things will be ruled out.] And do what you can to take care of yourself, to minimize the nausea whenever possible. You're not alone.

Hope this helps a little,
Melanie

Mary Jo · 07-21-2008, 04:49 PM

Hello lisajones,

I'm so sorry you are having these symptoms and feeling poorly. Thankfully the MRI came back clear. That's a relief for you I know.

I don't know what could be causing these symptoms but did want to say that I care and offer you my love and a cyber hug.

Mary Jo

hutchibk · 07-21-2008, 06:10 PM

Lisa - it is time to take the bull by the horns here.

1. Tell your onc that your obgyn is not responding. Maybe they can refer you to one that is a favorite and works closely with their BC patients.

2. Or if you like your obgyn, call the office again and tell them your history and your concerns and force them to take you seriously.

3. Have your onc call your obgyn and get the ball rolling asap.

Just some food for thought. You gotta make it happen. Stand up for yourself and become a vocal advocate for your own health~

Sheila · 07-21-2008, 06:42 PM

Lisa
Maybe its time for a PET of CT scan....just to rule everything out...it could even be your gall bladder....I agree with Brenda, time to call the shots for yourself, and if your current OBGYN is not cooperating, find another....after all you've been through, they should not ignore you...where's the compassion?????

Becky · 07-21-2008, 07:48 PM

I just changed gynes (I have changed every doctor I have had except for the rads onc who really doesn't have anything to do anyway). I felt rushed all the time - and for a "once a year" patient with a history of cancer of whom they removed my ovaries, they could give me a second. Once I almost ran out of the room after him to say, " I didn't ask you any of my questions yet". I paid $76 for a copy of my entire chart and went elsewhere and I am thrilled with the new guy. The old practice asked if I was moving. I said, "I'm not moving houses but I'm moving to a new practice".

If you can't get a response, leave. There are lots of good practices too (I also loved the staff at the new place too). I don't tolerate anything anymore. The copay is the same no matter what and I want someone who will be my partner in helping me keep myself well.

Mary Jo · 07-21-2008, 07:52 PM

Amen Becky and well said. I've found that if they aren't working WITH ME then they are working against me. Against us should never be tolerated.

MJ

Jackie07 · 07-21-2008, 08:00 PM

Nausea can be a symptom for many, many different things. I am glad your MRI was fine. Do you have a primary physician or family doctor? He/she is probably the one you really need to talk to first. The oncologist should be most knowledgeable about our condition. But they are really, really busy and are usually under tremendous stress.

My primary (The same one for my In-laws, my husband, and me) had his training from the Mayo Clinic and is well repected by his colleagues. I didn't hurt that his Dad used to be the President of the Board of the hospital. We got real lucky to become his patient just after he started practising in our hospital. (My Father-in-law got the wind from the nurses [yes, nurses are very, very important people] and had all of us switched to this primary.) So far he has taken care of the management of a diabetes, a brain tumor surgery, a heart attack, 2 hip surgeries, an angioplasty (3 stents), two breast cancer surgeries, a ganglion cyst, an Alzheimer diagnosis for just the four of us in a 10-year span... Because of his background and the policy of the hospital, he was never hesitated in making necessary referrals.

My point is: Pull all the strings you can to get this nausea thing checked out. It could well be indigestion or nothing[menopause?], or something serious [my Mother-in-law had 'indigestion' whole day before finding out she was having a heart attack].

Hope you feel better soon.

CindyE · 07-21-2008, 08:36 PM

Lisa,
Sorry to hear about all the nausea. Try another dr and see if you can get a new prospective from another professional that you can talk to. These things are so hard to deal with on your own. Don't feel alone. We are here for you. Please try another dr and let us know what steps they offer to find the cause. Take care.

Colleens_Husband · 07-21-2008, 08:55 PM

Dear Lisa:

I am sorry this is happening to you. You need to make sure that you are your own health care advocate. Your doctors are there for you, you aren't there to make them rich. If they can't find a cause of the nausea, then ask them what their plan is for finding out what is wrong. If they have exhausted the limits of their expertise, then ask them who they know who might be able to figure out what is wrong with you.

They may treat you like your crazy because they think they can get away with it. If they intimidate you, they don't have to deal with what should be an interesting challenge to them.

Lisa, you aren't crazy. Make them treat you like an adult.

Lee

Sherryg683 · 07-21-2008, 09:28 PM

I know you are frustrated, sometimes they just have no answers. I believe the chemo messes with our bodies so much that it takes a long time to adjust. You've had the MRI, ask for PET/CT to rule out anything else (although I've had a string of false positives this month with PET) they have always been accurate up to now. I have had this awful reoccurant pain in what would be my gallbladder area ever since I started chemo. Had ultrasounds, scans and some other fancy test of the area and they cannot find anything but yet it keep occuring..I figure it must be ulcers, I don't know. But I've ruled out anything major, so I don't worry as much now. Do what you can to rule out the majors and then take it from there..sherryg683

lisajones4 · 07-22-2008, 10:15 AM

Thank you all so much for your support, advice and encouragement. I can't tell you how much it means to me to be able to vent. I feel so bad talking to my friends about all my issues. I know they all care about me but most don't understand the aches of pains of having had cancer.

I am going to see a nurse practioner at my OBGYN's office tomorrow. I can't get into see my actual OBGYN until September. I am considering moving practices. I just love my OB so much. She delivered my 4 year old daughter and then cried when she called to talk to me about my diagnosis.

I am also making an appointment with my primary doctor who I also love. Cross your fingers that everything turns out o.k.

Again thank you!

Lisa

Jackie07 · 07-22-2008, 11:26 PM

Lisa,

How did the appointment with the nurse practitioner go?

lisajones4 · 07-23-2008, 10:28 AM

Thank you again for all of your support. I met with the nurse practioner today and she was just wonderful. They think it is one of two things: that I am either pregnant or that I need to get my period. They took all kind of blood tests and gave me a prescription for progerstone pills if I am not pregnant. (This has all been cleared with my oncologist). I should know the results on Friday. Thank you!

juanita · 07-24-2008, 08:27 AM

glad to hear you got some sort of good news. let us know what you find out and i'll be thinking about you.