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A new worry

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tushnurse posted 4/19/2021 07:41 AM

Jeanne - do these physicians have a a portal?
I would send a message through it to the pulmonologist. They are the one that will be doing the biopsy so it's up to them to get it on the books. WHen you call there is no record of a call, when you send a message through the portal there is, and those tend to get taken care of more quickly.

humantrampoline posted 4/19/2021 10:13 AM

Jeaniegirl,

I'm sorry they're not following through with you. In my experience, the portal or chart system does get more immediate results.

tushnurse, why is that?

Jeaniegirl posted 4/19/2021 11:56 AM

Yes, there is a portal and I've sent messages there last Friday and this morning. It makes me wonder if they have decided there is no need for a biopsy and haven't told me yet. Of course I would hope that is the case. Tush, since nothing shows up on the lung X-ray, is that a good sign? My primary care doc couldn't find anything showing on either of my lungs.

And I feel fine after recovering from the pneumonia. When I was in the hospital, my regular lung doc was out of state and his associate took care of me. He DID say the 'spot' could be the pneumonia showing up. The not knowing is a bitch and that Pet Scan guy scared the be-jezus out of me!

Jeaniegirl posted 4/20/2021 12:44 PM

Well ... here is the latest. Received a call from the doc's PA early this morning. She was apologizing because it seems the BIG hospital (for biopsy) lost the Pet Scan results - twice - and the imaging venue is having to send the results to them again. She was totally not okay with that - and neither am I. As I said, it's a huge medical center but I would expect more competency from them. I have to say I don't have a lot of trust in them right now.

I have a regular CT scan scheduled for May 3rd at the hospital where my lung specialists is located (they aren't set up to do biopsies there) ... so I will have that done and IF anything shows up on the CT scan, I will go for the biopsy. But I'm reluctant to have that BIG hospital cut into me for a biopsy since they can't keep up with a simple Pet Scan report. The PA says the specialist feels I need the biopsy but it's totally up to me and she understands why I'd want to wait for another CT scan first.

So that's where I am. I feel fine. I even feel GOOD ... but who knows. I hope I'm not making a mistake by waiting but the BIG hospital, at this point, can't find the Pet Scan report anyway and the imaging venue is having to send it again. I have a copy of the Pet Scan on CD but really don't want to drive almost 100 miles to take them a copy.

DragnHeart posted 4/20/2021 12:49 PM

Oh man what a shitshow. You must be so stressed. I wouldnt be jumping onto an operation table just yet either.

Hopefully thr CT finds nothing and your own doc feels a biolpsy isnt needed.

Hugs.

zebra25 posted 4/20/2021 13:00 PM

Oh my. How frustrating!!! Glad you are feeling better. I hope this gets resolved soon.

Jeaniegirl posted 4/22/2021 15:53 PM

Update: Finally got the call a while ago from the big hospital where biopsies are done. She tried to set up an appointment for the biopsy for next Tuesday but I told her I prefer to wait for the results of the new CT Scan, which will be done on May 3rd at my doctor's smaller hospital. IF something shows up in that CT scan, I will go for the biopsy on May 11th. The woman who called me kept referring to the place on my lungs as a 'mass' - which is scary. I just want this done and over with and will go from there.

BearlyBreathing posted 4/22/2021 22:35 PM

Communication is so important and you’ve been getting such poor communication. I will send you mojo for the scan.

WhatsRight posted 4/23/2021 01:42 AM

Jeanie girl, I’m so sorry for all the confusion!

The last time my H was in the ER, they gave him someone else’s CT results. 😳. But being disheveled with paperwork doesn’t necessarily reflect on the doctor’s skills. It’s so important to have confidence in your doctor. I hope you will feel that.

I wanted to share that I have had several biopsies in my life...well at least 5. Most were in my fibrocystic breasts. Also I had a needle biopsy in my throat (thyroid). I will admit that there was a bit of discomfort during the process. But nothing really bad. *The lung may be different. The pain afterwards was more like soreness that I’m sure a strong person such as yourself would easily handle.

Anyway, I shared the concern you are feeling about yours now. Thanks be to Godmine turned out ok, and I pray yours will as well.

I say this to myself many times...”Worry does not empty tomorrow of it’s sorrow...it empties today of its strength.”

You are a very strong woman. I hope you can be as positive as possible until you get your results. Then, I feel certain you will be able to face whatever issues (if any) arise.

Lots of prayers sent your way. The anticipation for the procedure and then the waiting for results are both so hard.

SI MOJO!!!!!!!!!

humantrampoline posted 5/3/2021 09:38 AM

Jeaniegirl,

How are you? I'm just popping in to wish you luck on your CT scan today.

tushnurse posted 5/4/2021 07:17 AM

Nope none of this is acceptable.
Please go get a second opinion.

Jeaniegirl posted 5/4/2021 08:26 AM

The new CT scan which was scheduled for yesterday was cancelled by my lung doctor, who wanted me to have the biopsy 'as soon as possible' ... instead. I REALLY wanted a second CT scan.

The lung biopsy is scheduled for next Monday, the 10th, at 11 a.m. Supposedly I will be in the hospital for just a 'few hours' then sent home to await results. It sure is causing me a lot of anxiety.

Thank you all for checking on me.

DragnHeart posted 5/4/2021 09:54 AM

This is so frustrating and yes i can only imagine the anxiety you are feeling. Its not ok to have lost pet scan results and to be running you around like this. What is the harm of another ct??? Ugh!

Hugs. Holding you up in prayer and sending mojo. Im so sorry this is happening.

Jeaniegirl posted 5/4/2021 12:18 PM

Thank you all.

Tush, my lung doctor is very renowned and I like him even though I've only met him once. His partner took care of me when I was in the hospital since main doc was out of state. When the PA called me to tell me he wanted me to get the biopsy 'as soon as possible', it was scary. Then she said I should schedule it for the earliest time I could get. She then said, If you were my Mom, I'd tell you to get it done this week if you could. That is SO scary.

One very big plus is the spot was just discovered in March -- so it wasn't there when I had a CT scan at the end of October. So whatever it is, it's fairly new. I think the hardest part will be after next Monday when I'm waiting on results.

BearlyBreathing posted 5/4/2021 14:26 PM

Jeannie—what a scary time, but glad you are getting the tests done.
We’ll be here, cheering you on and sending that SI mojo. ((Hugs))

PricklePatch posted 5/4/2021 14:34 PM

This is very scary. I will keep you in my prayers.

Jeaniegirl posted 5/4/2021 14:52 PM

Thank you all. I'm keeping busy, working from home and doing some cleaning to get things set up for next week. I think I will be out of commission for a day or two, from what I hear. I actually have a doctor's appointment pre-set for May 13th, three days after the procedure and I was told they might have the results by then. If not they will reschedule me for a few days later. I dread the waiting time.

I am feeling okay, no pain but still a little short of breath from the pneumonia (I hope) ... and using a powder inhaler occasionally.

tushnurse posted 5/4/2021 19:03 PM

I do not care how good your dr is or how renowned he is. When you are talking cancer or a possible cancer diagnosis you should absolutely 100% Of the time get q second opinion.

I wish you luck on the biopsy but hope you still consider getting a second opinion. You dr basically cancelled your CT forcing you into getting the biopsy.

Jeaniegirl posted 5/4/2021 19:47 PM

I wish you luck on the biopsy but hope you still consider getting a second opinion. You dr basically cancelled your CT forcing you into getting the biopsy.

Tushnurse, thank you! I will. Yes, I did ASK for the CT scan and at first they told me okay, then changed their minds.

humantrampoline posted 5/5/2021 12:20 PM

Jeaniegirl,

For your own sake, I would prefer that you had a CT scan before your biopsy. The first is a non-invasive procedure with miniscule risk of complications; the second has complications you and your physicians may be minimizing.

My mother's renown physicians (her oncologist and her pulmonologist) argued different perspectives over her condition after her biopsy. AFTER, not before. One scolded us (my siblings and I) for not making more informed decisions, but we weren't making decisions for her at that time. We could have forced more involvement. We were also accepting the advice given to her.

I sometimes think physicians in the US are making decisions based on their own liability.

I understand personally how hard it is to fight for this. It's exhausting, and you just want to trust and believe someone. Do you have anyone to help you in person?

If you decide in any way, I support you fully and will be thinking of you.

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