Brain PET results

[Joan M]

I had a brain PET on Wednesday that was thankfully cold.

Here's the info. The PET was a follow-up to MRI scans every three months from last June that showed progressive enhancement of the operative bed. The craniotomy was in mid October 2008, followed by five shots of image modulated radiation therapy (IMRT), a form of stereotactic radiotherapy (SRT).

If the PET had lit up, the neurooncologist recommended surgery to determine whether there was tumor regrowth or scar tissue, as the latter can also light up. The radiation oncologist said that I could have more radiation to that area, which surprised me. He mentioned whole brain radiation as a possibility, to which I shook my head no. But he also said that targeted therapy was also an option, but of course at a lower dose.

There were no other spots on the brain MRI.

Now I'm going to turn my attention to the fluid buildup in my back in the area of the thoracic surgery/lung wedge resection I had last summer. The fluid the surgeon withdrew in the office a few weeks ago tested negative for everything (cancer and bacterial and fungal infection). The CT scan report suggested the possibility of a "communication" between the pleural space and posterior wall. When I asked him about that on the phone, he noted cutting a lot of muscle and maybe something came a part. Prior to that in the office he said that is something seen shortly after surgery. He's the silent type and would not speculate in the office how the fluid might have accumulated. He only discussed the communication between the two spaces when I asked him about it.

I have a tremendous about of discomfort again, perhaps related to the deep penetration of fluid in the back muscle.

Joan

[Ruth]

Joan ~
Great news except for the back pain! What can you/they do to help with the discomfort in your back?
Ruth

[Jackie07]

Joan,

So glad that everything is clear. Try not to move around too much as it may increase the release of the fluid and add to your discomfort.

Can the doctor drain the fluid to give you some relief?

[caya]

Joan,

So glad you are clear. Hope they can do something for the pain. would physio/massage help?

all the best
caya

[Rich66]

Ok..he's the silent type. What are your thoughts? Sounds like another opinion wouldn't hurt.

[Pam P]

Rich has a good suggestion on a 2nd opinion for these fluid pain. Maybe another doc can find a resolution. Glad to hear the brain scans are good. Thinking of you. Pam

[Laurel]

Great news on the PET/brain front, but that pleural fluid sounds miserable. I agree with the others that another mind pondering your pleural problem is in order!

[Ellie F]

Really glad the brain PET was good. Sometimes a second opinion is good just for someone to review the situation through a 'new' set of eyes.
Ellie

[Cannon]

Hi Joan,

So glad the PET was "cold." I'm sorry you continue to have complications -- but I know that you are a great advocate for yourself.

Keep it up!

[Becky]

Dear Joan

I am glad about your PET scan results. That's excellent. You should consult someone to see about the plural infusion. You might be able to get that fluid drawn off. It will make you much more comfortable and it might not come back either.

Hugs to you

[chrisy]

Good news Joan, for the most part. I like the Pet description "COLD". On to the next step; resolving the pain/fluid buildup.

One foot in front of the other, my friend.

[Ceesun]

Joan, Good news....and I sure hope your discomfort eases up. Ceesun Love your pic!

[schoolteacher]

Joan,

I am glad to hear your good results from your brain PET. Hope they can figure out what is causing your pain in your back.

Amelia

[lexigirl]

I am happy you are doing well!! I hope that you will get relief soon soon from the fluid build up.

[Joan M]

Hey, my HER2 friends, thanks for your input.

Today I saw the pulmonologist that's been following me since I had started coughing up blood a year ago February and after I had the lung surgery in July to stop the bleeding. In fact, he's the one who admitted me to the hospital when I went to the ER. I have a lot of confidence in him.

I had contacted the thoracic surgeon's office about my concerns and they sent an e-mail to the pulmonologist, and his office called to set up an appointment. The thoracic doc's nurse also called to say basically that the surgeon doesn't really do follow-up, except that he aspirated the fluid from the bump in my back and had the fluid tested. He was the correct person to contact in that case, but after that the pulmonoloigst would handle it.

As it turns out, the pulmonologist doesn't think that I'm in "danger." That was a big concern of mine, that I was "unraveling" inside and something bad was going to happen suddenly. I had a chest x-ray just prior to seeing him, and he said that my lung looks very good and that the surgery is healing well. While nobody actually knows why the water accumulated in my back, the doctor suggested that there might be an area that did not close up completely on healing, that it's slightly apart and some how the fluid seeped through. Although he said this is something generally seen early on after surgery.

So far, nothing else has happened. It's just that I have a lot more discomfort and more shortness of breath on exertion. It seems that I just have to be careful. That I'm "fragile" in this area now -- my muscles were cut extensively and I have a 10" scar going from the top of my shoulder blade and angling around to my side, the ribcage area was traumatized with the rib spreader and also three ribs where fractured to get into my chest, etc. The doc didn't say that I should be more careful, but it's something I think I should do.

Overall, I felt much better after meeting with him this afternoon, less afraid and less apprehensive. I'm also tremendously relieved about the results of my brain PET.

It's such a rollercoaster ride we live with.

xoxo
Joan

[SoCalGal]

Wow, so much to take in and process and figure out. Great news on the scan. My thoughts on the leakage...you've been through a lot of surgery, and a big one. Stuff can happen in our body that takes awhile to resolve. It is reassuring to hear that you are not in danger. As far as being careful, bones heal stronger than before they are broken. BUT at our age, we should be careful:) I have had many surgeries and things re-arranged. It leaves one feeling strange, and having to get comfy with another sort of body.

I would get another opinion on the back fluid, and what can be done to make you more comfortable. I know that compression works well to prevent fluid/swelling, but don't know if that is possible for your situation.

Sending a big hug from my heart to yours.

[Joan M]

Flori,

Yes, we're get older ... yet somehow our minds don't seem to process that. I still think I'm a spring chicken rather than an old hen.

I'm glad that you're doing so well!

Love your pic!

Joan