Good News and Question - 1252354

sherrys
Posts:212

First the good news. . .I had a brain MRI and a chest/abdominal CT today. Both have remained unchanged and my oncologist stated that he sees no evidence of cancer at this time. I will remain on the 50 mg of Tarceva. I am still having several side effects so he does not want to increase my dosage.

The bad news is that there was a new finding today. The radiologist identified what he and my dr. believe is an infection in the space between the vertebrae in my spine. He said it is between T1 and T4. He asked me a lot of questions about the infections I had after my brain surgery, which was followed by 7 weeks of IV antibiotics. He did a physical examination and I have no pain where the area is. He asked if I had any fevers, sweating, etc., and the answer to all was no. He mentioned that there was a chance that they may have to biopsy the area, but he felt pretty sure that it was not cancer as he said it was rare for cancer to spread to that area. He wants me to have an MRI. He seemed concerned but not too much so, but I did notice that the MRI is to be ASAP. I wasn't very worried when I left his office.

Of course when I came home I started Googling spinal infections and OH MY! I thought this was not much to be worried about but my searches are telling me otherwise! So my questions are, how dangerous is a spinal infection? What could cause it and what is the treatment?

Thank so much!

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Reply # - January 8, 2013, 07:21 PM

neilb
Posts: 84

Hi, Sherry! Good to hear about your scans. I think the "infection" will turn out to be nothing! I hope you didn't use up all of Dr. S.'s good news, as I've got scans and a visit with him two weeks from today.--Neil

Reply # - January 8, 2013, 07:31 PM

sherrys
Posts: 212

Of course I saved some of his good news for you. Lol

I hope you're correct about the infection.

One of these days we will be there at the same time.

Reply # - January 8, 2013, 09:57 PM

Dr West
Posts: 4735

Sherry,

To be honest, this is really uncommon enough and outside of what we do as oncologists that I think you need to get more answers about what's going on and then talk with someone who works in that field. I don't answer questions about colon cancer because I'm pretty specialized in other cancers and I don't think it's helpful to have people who don't have enough knowledge and experience trying to provide answers that their not qualified to give. And if I don't feel I should be answering questions about many cancers even as an oncologist, I don't think oncologists should be trying to provide answers for questions about infections that aren't what we deal with on a fairly regular basis.

Good luck.

-Dr. West

Reply # - January 9, 2013, 04:46 AM

sherrys
Posts: 212

Thanks Dr. West. I initially thought this was related to the cancer, but the more I am reading I realize its not. Also, the more I'm reading the more frightened I'm becoming

Reply # - January 9, 2013, 12:48 PM

catdander
Posts:

Sherry, This is just not fair. You've had your share of scary situations for 3 people. I've been worried about you so glad to hear your cancer is under control or gone. But this? I hope it's nothing as bad as what you're reading. Please keep us posted as soon as you find out something,
Janine

Reply # - January 9, 2013, 03:21 PM

laya d.
Posts: 714

First of all, YAYYYYYYYYYYY on the NED finding. . .I'm so darn HAPPY!!!

Second. . .aaarrrgghhhhh on the possible infection findings. And here's to the hopes of it being nothing more than a smudge on the lens of the CT scanner. . .

Please keep us posted. . .

Laya

Reply # - January 9, 2013, 05:25 PM

sherrys
Posts: 212

Thank you Janine and Laya for your support. Although my doctor asked for my MRI to be ASAP, my insurance company is balking and it is not yet scheduled. It is so frustrating!

Reply # - January 9, 2013, 06:02 PM

catdander
Posts:

Poor Sherry, It seems you have to work at everything. I hope the doctor is able to convince the gods of precert to get what you need.

Reply # - January 9, 2013, 07:50 PM

Dr West
Posts: 4735

Good luck with that. Frustrating that good medical judgment isn't enough to ensure that tests felt to be medically indicated are covered. This happens more and more, and sometimes we just can't modify their positions, even with a good, well-reasoned justification.

-Dr. West

Reply # - January 10, 2013, 04:25 PM

marisa93
Posts: 215

Sherry,

What wonderful news on the cancer front!!!!! YAY!!!!!!!

As far as the suspected infection, I'm with Laya in hoping it's no more than a smudge on the lens of the scanner! Not having any symptoms sounds encouraging!

Take care and keep us updated,
Lisa

Reply # - January 23, 2013, 12:53 PM

sherrys
Posts: 212

I wanted to give a quick update about the spinal MRI I told you all about. The doctors all believe that it is definitely an infection they are looking at and now they need to find the source to treat it. The first step is to have bloodwork, then a biopsy, then I will see the infectious disease doctor for treatment. The doctors think it is possible that this is a residual infection from the one I had after my brain surgery. I will say, I am NOT happy about having to have a biopsy! I really don't know how serious this is - or the potential for it to be serious - but it seems that the doctors are trying to move quickly on it. The thing is, I have no symptoms. I have had problems with my lower back, but I know exactly when they started and remember twisting it and not being able to move. That pain comes and goes depending on what I do (like lifting a suitcase onto a bed this weekend, twisting, and OUCH!).

My insurance company did not make this easy. First they denied the MRI, then after a peer to peer, verbally approved it. After it was scheduled, I got a letter saying it was denied. The doctor had to have another peer to peer and they finally approved it. It took 2 full weeks from the time my doctor asked for me to have it ASAP.

Reply # - January 23, 2013, 01:03 PM

double trouble
Posts: 573

Sherry, it is good to hear that they don't think it is lepto. But it sounds very scary. I hope they can do a pain free biopsy and that they figure it out quickly and have a tolerable treatment available. Please remember you are not alone, your GRACE family is here and collectively we can send out a whole lot of positive energy.

Keeping you in my thoughts,
Debra

Reply # - January 23, 2013, 02:31 PM

Dr West
Posts: 4735

I'm sorry for the challenges you're facing, with the insurance issues, etc., adding to the medical questions. I don't know if it's a lot of comfort, no comfort, or cold comfort, but these kinds of run-arounds with denials and appeals and delays are increasingly common everywhere. Sadly, hardly a day goes by these days when I don't get some insurance company second-guessing my good clinical judgment. I'm afraid we're just going to see more of this.

Good luck.

-Dr. West

Reply # - January 24, 2013, 03:09 PM

marisa93
Posts: 215

Sherry,

It's good to hear the doctors are pretty confident it's an infection and not lepto. I hope you get to some answers quickly and as pain free as possible and on the road to recovery from it! Take care.

Lisa

Reply # - February 7, 2013, 08:25 AM

sherrys
Posts: 212

I FINALLY received results today of my spinal biopsy. My bloodwork, MRI and biopsy are all "unremarkable". So now they are saying they don't think there is anything wrong. I'm happy for that news but a little irritated that I said all along I wasn't sick and had no pain, and I ended up worrying for 5 weeks over what turned out to be nothing!

Reply # - February 7, 2013, 10:02 AM

sherrys
Posts: 212

Neil, I swear I'm going to get Denise to tell me when you'll be there so I can come the same day. :)

Thanks, Janine. I wish it hadn't taken 5 weeks as well, but at least I heard what I wanted to hear.

Reply # - February 7, 2013, 10:41 AM

aunttootsie001
Posts: 324

Thank Goodness Sherry! Hopefully now you can breath a little easier! I'm sure the Stress the past 5 weeks was worse tan Scan anxiety! So Very Happy For You! Lorrie.

Reply # - February 7, 2013, 07:14 PM

neilb
Posts: 84

Hi, Sherry! I actually exchanged emails with Denise today. I'm next due in late April. Maybe it will work out!--Neil

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