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I'm lost & have questions please!!

Jude1968
Posts: 1
Joined: Dec 2012

I just had cat scan of chest w/ contrast (I have complained of pain
In center but slightly to right of my chest. Also an area in center just barely
Below both breast. I have been where I can't eat much quantity food at a time
especially at night or I can't breath & painful.

Ok, Pulmarnary Dr says I have an area in Right middle lobe of R lung. It is bunting
right up next to my heart. He says he is afraid to do a biopsy so close to heart. (So I just
do nothing??). I don't have size of this cause this was 1st scan of abdomen that it showed up
in Sept & no contrast. So this test Fri just said no change. It's been 8 wks

This new scan did.
Show --soft tissue prominence within the subcarinal region measuring 2.3 x 1.0 cm Some of this
relates to thoracic esophagus. Right hilar calcification is noted. No substantial hilar adenopathy is noted.

Calcified right lower lobe granuloma is appreciated. Scattered areas of
Subsegmental atelectasis within left lingula, the right middle lobe as well as left lower lobe appear unchanged

Evidence of prior granulomatous disease.

Dr said to biospy (in between what he called windpipe & esophagus ) is very risky also. He left me with just come
back in 4 mos & repeat cat scan. Any suggestions, thoughts. I didn't know where to search why I came here. I hope it's ok
I wonder if any of you have heard of anything in these areas ?

Also something I failed to tell the Dr & I'm wondering could it have anything to do with this.
I have kept a bladder infection the past yr. I have one now. I don't know if I am ever clear but every other month since
Last Dec I have had to get antiobitics. It's been cultured & will be a different bacteria last 3 times. Could this bacteria have caused
Something ? Do I just sit & wait? Should I ask for a pet scan? If this grows between my windpipe & esophagus I won't be able to breath
I bet. Anyone ever had this. I looked up subcarinal. So do you think it's my lymph nodes? That makes me think that area could have something
To do from my many bladder infections. I feel like I'm having to diagnose myself. The other area near heart?????
Sorry I have rambled. Thank You

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 276
Joined: Mar 2011

You've got an awful lot of detail and symptoms there, and if I were in your shoes, I also wouldn't be comfortable being told "come back in four weeks," let alone four months.

You're going to need to get loud and advocate for yourself. Do you have anybody who can help you out?

winter woman
Posts: 14
Joined: Nov 2012

You MUST go get a second opinion!!! the tumor could grow and become even more of a problem! this doc is very casual about something this serious! Please...go get a second opinion from an ONCOLOGIST!! dont wait...good luck and i will pray for you

dennycee
Posts: 691
Joined: Mar 2011

Most def get second opinion. Look for a medical educational university. Yes a teaching college. They tend to have state of the art equipment and perform the newest and cutting edge treatments. To find one google the national comprehensive cancer network. Am using my phone et now or I would have address. Try NCCN.org.

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

It sounds like a second opinion would be worth while. However, a second opinion is not always the easiest thing to get. Nevertheless, you might try a different specialist. If you have been seeing a medical oncologist, you might try a radiation oncologist. Or a interventional pulmonologist. Or a thoracic surgeon. But all of these specialties would be hard to get an appointment. So you do have a rough road.

It seems you have not seen a medical oncologist. He's the one who would oversee chemo. That might be my next stop.

However, you should be prepared to receive the same story. It may be the same or it may be different. (How about that for great insight.) Rick.

Levesque123
Posts: 3
Joined: Jan 2014

I hear yeah ----- I have heard so many doctors leave people "out in the cold", basically shrugging their shoulders - it's terrifying if you are the patient - 2nd opinion?  just go to the emergency room and exxagerate some of your systems - they have seen more working in the emergency room than these specialty doctors............

 

Took me forever to find out the severe arthristi pain was actually lung cancer - and I found that out on doing tons of research

 

Had my lung removed last month - they say I'm a 1A - i was a 2B -  had lots of chemo and radiation - and I'm still lost

 

sorry for you

emondsue@gmail.com

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