OT - more oncology stuff....

[anon07072023]

Hi everyone,  

The ct scan that I had about a wk ago now shows I have nodule in my lung, multiple hypodensities in my liver that have doubled & tripled in size, my liver is about 35% larger than the max size it should be, more than the normal amount of lymph nodes are showing in my aortacaval, par-aortic, iliac chain, retroperitoneal, & mesenteric lymph nodes with some of the sizes approaching 1 cm.  And a sclerotic bone lesion. It's also showing heterogeneous ovaries - which I've read could mean cancer.  Yet, my stupid oncologist says it's pretty much normal.  No real changes from last time. You would think with all of this together with all of my symptoms she wouldn't say that to me.  I need a non-dumb doctor and a 2nd opinion I think. Last time they said I had a malignant process going on - now with all of this, there really HAS to be one going one. It doesn't take a rocket scientist....

I'm done with doctors...(I wish I could really say that....)

-Kelly

[anon07072023]

Good News! My partner's brother (in-law), has a brother, who's an oncologist at Emory Univ., and he said that he's willing to help me.  He's going to look over my reports and then we'll go from there. He said he may request that I send him copies my ct scans. He wants to know everything that's going on and then he'll tell me what he thinks of everything.

I'm going to scan in all my reports tonight for him.

[Lulu54]

this saga should not be dragging out like this but I can't figure an angle for you - you are being proactive in every way possible.  hang in there.

[anon07072023]

Here's my update. MD Anderson was supposed to call me within 2 business days. They never called, so I called them yesterday & today. They seemed really unorganized. And in the end, she said they only take patients with definitive diagnosis for carcinoid and it has to be thru biopsy. I guess they missed the whole point as to why I wanted to go there.

Then I called Mayo this morning and spoke to a girl there. She was 1st trying to set me up with an oncololgy appt then asked if I'd take either an oncology or GI. I said whoever is willing to see me. Then she kept putting me on hold. She came back on the line and told me that she couldn't set-up an appt, that I'd have to fax them all of my related medical records, labs, reports, etc, with a note saying why I want to go be seen at Mayo. And then it typically takes them up to 6 wks to review the requests. After they review, they either mail you a denial or call you to set-up an appt.

Can't anything ever be easy???? It just seems like the door keeps getting slammed in my face just like it did for my parents. :-(  
I'm waiting for all my medical records to arrive, then I'll fax them all my info and wait....

[anon07072023]

Thanks Mary. I'm crossing my fingers that they call me today - but I guess if not, at least by tomorrow. My urologist said he has several patients that have been treated there and he thinks I should be able to get in to see them maybe within 2-4 wks.

I never question - I know you're always sending good thoughts my way.  

Yes, it is something I keep re-playing in my head.  Especially since I'm about the same age and have the exact same symptoms as my mom and the same lab values as my mom...AND this is really weird but probably not related, she kept getting scabbing on the side of her ear, and that started now for me a couple of months ago. They kept thinking it was carcinoid skin cancer, but kept coming back inconclusive.  

[twopack]

I don't think very many businesses observe Columbus Day by closing their doors.  Mondays are always busy phone days in doctor's offices but I hope that gets you a better shot at picking up an appointment from someone who cancelled over the weekend.

I'm sorry you're struggling so to get through this process Kelly.  Is there anything your aunt can do to advocate for you on a professional to professional level?  This should just NEVER have to be this hard but it is particularly OUTRAGEOUS for YOU.  How are you supposed to keep from imagining history is stuck in a reel-to-reel auto-replay?

Sorry I haven't been around here enough to keep up with your news or send along some reoccurring good thoughts.  They are certainly with you now!!

[anon07072023]

Thanks Shell.  :-)  Hopefully, they'll call me back to schedule tomorrow. I'm not sure if it's considered a holiday for them or not.

[sllowe]

Hi Kelly! I am so looking forward to you getting into doc in TX.

You NEED this 2nd opinion. You NEED a PET scan, asap!

Your aunt is spot on.

(((hugs))) I am praying for a speedy appt for you.
-shell

[anon07072023]

I just requested an appt at MD Anderson in Texas. They're ranked #1 for the best cancer center in the nation based on U.S. News & World Report.
http://health.usnews.com/best-hospitals/rankings/cancer

[anon07072023]

I called my aunt last night who's a nurse practioner. She's horrified that they haven't done a PET scan on me and don't have plans to do one, even after I've asked.  

When I told her the measurements of my liver she kept asking me again, "How big did you say it was?"  She can't believe the size of it - especially with me being a female and only about 5' 1 1/2" - the max size depends on your gender and your height as well.  She told me that they need to run a sed rate to see where I'm at and asked if my albumin is getting low. I told her when I started going to the onclologist, it was borderline high, and the last labs show that it's borderline low - another bad sign.

She told me what's especially concerning is not only do I have more than the normal amount of lymph nodes, but their distribution through-out my abdomen - in 5 different areas.  And she was surprised that they haven't ran 3 certain tests to see about my ovaries - something like a CA-125, CEA, & something else.  

She said that I need to get my butt over to the Mayo Clinic or MD Anderson as soon as possible.      

[anon07072023]

My partner's sister was going to send him an e-mail to ask if he'd mind looking them over. As far as I know she hasn't heard back from him. However, I am calling the Mayo Clinic first thing in the morning to see if they'll let me set up an appt with an oncologist there.

I do recognize the good medical professionals. My mom was an RN - she had her master's in nursing (she was the top nurse in her graduating class) and was charge nurse of her floor. One of her sisters is a nurse practioner for a neurologist, another one of her sisters works in pediactrics and teaches nursing classes at Loyola University. Another one of her sisters works as a dietician or something like that at a hospital. And one cousin is married to a doctor and another one is married to an anesthesiologist - just to name of few. My family is full of medical professionals.  That's one of the reasons why it makes me so mad when there are bad ones out there.  

Sending back the hugs and love...

[rendean]

Dear Kelly,

I ditto all the comments above. I especially back Lisa's point of view probably because of the shared professional background.

Please, please make the call about the oncologist at Emory. I go there for my neuro and they have one of the best cancer centers. Cry, plead, beg whatever you need to do to get another independent opinion.

Sending lots of hugs and love your way,
Ren

[jensequitur]

These doctors are way too busy - too many patients.  They have to relearn an individual's case, usually while they're visiting with you at the appointment.  Best of luck - this sounds horribly frustrating.

[Lulu54]

not much to add except 'did you make the call?'  hugs, L

[LisaJF]

Good did you call the brother-in-law's brother yet?  If not, hop to it girly!

I figured out the typo.  Im good at that. :P

-hugs-

I will wait anxiously as to the news you hear when you do make the call and when you go into see the person or any person for that matter.

Lisa

[anon07072023]

Eating equals Waiting...thanks to my Windows cell phone... :-)

[anon07072023]

Thanks Lisa and Amo. Lots of love to you. Yep, I indeed need a 2nd opinion. I'm eating to see if my brother-in-laws brother that's an oncologist at Emory Univ would be willing to look at the scan or report & let me know if he thinks its anything to worry about.

[LisaJF]

You know I responded the way I did because I DO NOT want you to have anything else wrong with you.  (As you do not either).  However, if it was me in your position with the health history of your family the way it is, I would push for that second opinion.  Because if it is cancerous, then all this piddling around is just allowing time for that **** to spread and each passing second, minute, hour, day, week or month that passes can put a nail in your own coffin.

I did agree you need to get that second opinion.  I hope you are figuring out who you can call to get this pronto.  

I agree with AMO, your fears do warrant another opinion in addition to the laboratory and diagnostic findings.  Please hurry up and do so then.

I wanted to think only positive things and excuses as to why you're experiencing the things you are because frankly, I don't want anything more happening to you or you dealing with anything else.  You got enough on your plate.

Lots of love

Lisa

[AMO]

Dear   Kelly,

YOur    frusturation  and fear does warrant   another oppinionn and   more explaination to you. It is most exausting doctor to doctor to appt to test to...
Has anyone offered you a patient advocate to help you?

I   do not know anything about these  findinngs and what they imply since I have never encountered anyone with them. I can imagine you are unsettled with the explainations and seeming lack of concern. Absolutely unserstaNDABLE.

You deserve all you questions answered completely.
Bbe well today, Amo

[anon07072023]

Hey Lisa, thanks for the note.
Actually, with carcinoid tumors, they tend to be small. My mom's in her lung were between 4-5mm, and at that size these particular type of tumors can start to metastisize - which hers did.

They thought the things for my dad were nothing to worry about and they saw nothing on any of his scans - just a small thing on his brain MRI.  Then they did a bronchoscopy and found the cancer all over his lungs - yet, nothing showed on his scans at all.
Then he died only 2 1/2 months later and the autopsy showed he had cancer everywhere - in his brain, in his bones, in his abdomen, and of course in his lungs. Yet, NOTHING showed on his scans.

And I DO have numerous new lesions on my liver, including ones that are growing in size.
I think some doctor's need to pay attention more to their patients. She just glanced over the report when I was in her office & said it was pretty much normal with no changes.  I've seen it happen too many times.  It's either they don't know enough or like I said, they just don't take the time to pay attention to what's going on.  My labs are all off, too.

Sometimes, yes, you can't trust doctors....  My dad's sister died the same way and my mom and my....      

[LisaJF]

Single pulmonary nodules can exist in lungs that are not cancerous and usually are 3 cm in size.  Sometimes over time, they can disappear (as mine did).  In 2007, I had one along with something going on with my liver as well.  Keep in mind that medications can also enlarge your liver depending on what you're on.  

Sclerotic bone lesions can have cancerous and noncancerous causes as well.  Bone lesions can be from a primary cause of "bone cancer" and also the etiology of them forming could be from metastatic cancer (secondary).  Keep in mind, that bone lesions can be caused by benign tumors or from an inflammatory response from bone tumors (benign or cancerous).

I'm not attempting to discount your concerns because I know you have every reason to be concerned considering your family history, in addition, that you are having symptoms.  I would like to think positive in thinking if the doctor was alerted to the possibility that you may have cancer, would you not think she/he would make it his/her duty to find out more?  To rule out that possibility? I would think a person would want to protect their medical lisensure and not be a liability to a patient's health and/or cause their death?  It's just a perspective I want you to keep in mind.

Lymphadenopathy (enlarged lymph nodes) can be an inflammatory response to something else other than cancer.  

No real changes from the last time you had a scan COULD also indicate you're safe from cancer.  Think about it, if it was cancerous, would you not think more chains of lymph nodes would enlarge in size or other lesions appear from comparison to your last?  

I agree and would encourage you to get a second opinion. I know its a pain in the *** and you're sick of doctors thinking out loud with inconclusive evidence to think one way or the other.

I know one thing, I do not want you to have cancer and nothing being done about it.  Therefore, I would say it is pertinent for you to seek the second opinion from another doctor to either support your initial oncologist's conclusions or argue to ensure that everything is being done correctly.  I would hope the second opinion would take the time to explain why these things are appearing on your CT scan with sclerotic bone lesions, to enlarged liver, to lymphadenopathy and symptoms.

Unfortunately, YOU will never be done with doctors.  The only thing you have in control for yourself is CHOSING the right one for YOU.  Go get em' tiger.

Lots of love and hugs,

Lisa