Jolie's mother from California - Dx Oct 2013

[Olga]

Jolie - you are asking if "PET-CT scan is more of a PET scan than a CT scan?" It all depends on the resolution of the CT scan. When the CT scan is done for the specific area (like the chest or abdomen) it is usually done with the smaller step between the slices (it is a spiral scan and the slice is the distance between the lines of the spiral and the final image is created using the software). When all body is scanned in addition to a PET scan, the lower resolution is usually used as the radiation dose would be to high if a high resolution CT scan would need to cover all the body. If the mets are very small, less than 2 mm, they are not going to be visible on the scan with the step for example 5 mm - they are going to fall trough. The PET part of this combine scan could be used to find ASPS mets but only if they are bigger. It is fine to have it for an initial staging as one of the scans but if the lungs are to be checked specifically, the higher resolution chest CT is needed (and is always used). ASPS most often metastasizes to the lungs first. You might be wondering where the metastases might come later from if the primary tumor is already resected? The ASPS is often already disseminated when the primary is resected but the mets sit dormant (sleeping) in the distant organs until the y would start to grow all of the sudden and became visible on a CT scan (or not, some people get lucky).

[JolieS]

Thanks for the advice Bonni. We will try and request a copy of the cd of the pet-ct and MRI.

Olga, thank you so much for the explanation. I'm thankful that this initial scan showed no spread (as it would have to be a larger tumor to show up apaprently!) and am keeping positive that once she has the chest, abdominal and pelvic scans nothing will show up!!

My mom is in high spirits, doing awesome getting stonger by the hour! Her attitude and strength amaze and inspire me.

Tomorrow I have to give her a her blood thinner shot in the tummy since my step dad will be at work I hate shots and get light headed like a wimp so I'll be channeling all of you superstar caregivers and fighters!

Thanks again. I'll let you all know how the meeting tomorrow goes!

[JolieS]

Hi all,

We met with the surgeon today and he explained that he will be referring my mom to an oncologist at UCLA who will order her next round of scans. We will get the pathology report Thursday evening to find out if the margins are clear. We will also discuss radiation therapy with the oncologist. For now we are grateful that the pet-ct scan was clear and that the surgery went well.


Side note, she had the drain removed today and is now experiencing more pain than she has before to the wound, does anyone know if this is normal? Hard to see her in pain!

Thanks,
Jolie

[D.ap]

Hi Jolie

How does the incision look today ?
Was the surgeon concerned on how it looked?Puffy?red?
Was your mom given instructions/restrictions on how to exercise? How about things activities not to do?
How about pain meds?
Tomorrow is one week, right from the day of surgery
Is she still on heparin, the shots ?
If pain is not being managed by her current meds I would call the doctor and request something additional or different. There is NO reason she should be in a lot of pain

Debbie

[JolieS]

Hi Debbie,

The doctor said he was pleased with the incision and thought it was healing nicely. She's supposed to rest for the next week and keep walking to a minimum. No exercising for 6 weeks at least. She has the shots for another week. She has very strong pain meds, we were trying to cut down the dosage but the doctor did say he expected her to stay on pain meds for the next month or so since it was such an invasive procedure. It must have to do with the removal of the drain... She'll be okay!

Thanks for your response, I hope you are doing well!

Jolie

[Olga]

Probably the wound was disturbed when the drain was being removed, but also with the drain out there is no good size drainage for the liquids to go out if needed as they might get trapped by the swelling so if the wound gets puffy, red, the temps go up she might need to go to see him again.

[JolieS]

Thanks Olga. The doc said that it's normal for patients to experience a slightly fever during recovery... Maybe he was preparing us for more pain in the healing process to come. :/

[D.ap]

Jolie

The cutting down on pain meds is probably causing your mom to feel more pain
I was glad to hear that you are still on blood thinners to keep from blood clots
She has had some major surgical removal of leg tissue /muscle so pain pills are there for just that purpose. To keep pain down.

Don't be shy about talking to the doctor if you have concerns
Will she be scheduling PT?
You guys take care

Debbie

[Bonni Hess]

Dear Jolie,
In talking to Brittany about your mother's increased pain following the removal of her drainage tube, Brittany was amazed that the doctor removed the drain so soon following the surgery. Brittany reminded me that her drainage tube was not removed until 3 weeks post-op because her surgeon told her that if it was removed too soon, the fluid would have no where to go and would accumulate inside to cause severe swelling and pain. We had to closely monitor, measure, and empty the amount of fluid in the exterior balls into which the fluid drained from the tube, and it wasn't until the fluid drainage had greatly decreased to an acceptable amount that the tube was removed. Brittany was very anxious to have the tube removed sooner because it made it difficult/impossible for her to wear pants, but the surgeon said that she would NOT want to have to have the tube re-inserted if it was removed too soon before it had adequately drained the fluid because insertion of the tube is a very painful procedure which was initially done under anesthetic at the time of the surgery. I Hope that this is not the cause of your mother's pain, and that it is now much better and under control, but I thought that I would just offer this as a possible insight. Take care Jolie and give your mother best wishes and gentle hugs from me.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[JolieS]

Hi there,

My mom is feeling better today, I think the removal just disturbed the wound as Olga said. Thank you for all your thoughtful posts. We monitored and measured the fluids from the drain, and it has gotten down to 20ml which was low enough for the doctor to remove it. He said the body is more than capable of absorbing 20ml of fluid so I think it will be ok! I was just so worried seeing her pain level increase like that but she's much better today (we upped her pain meds too).

She will start physical therapy after the wound heals.

Thanks again!
Jolie

[Ivan]

Jolie, just curious - which muscle did your mom have removed: vastus lateralis, vastus medialis, vastus intermedius, or rectus femoris?

[JolieS]

Hi Ivan, she had the rectus femorus removed.

[Ivan]

Hi Ivan, she had the rectus femorus removed.

Yes, I think she can recover fully. There are many muscles which contribute to hip flexion

[JolieS]

A quick update - my mom received news that the margins were clear! Great news. She will be meeting with an oncologist and radiation oncologist in the coming weeks to discuss radiation treatment.

[Amanda]

Hello an YAY at the clear margins!

n an i will say it again really think about this because even they will tell yo that ASPs is radiation resistant...
I did 33 treatments an am still paying for it five years later...

If you do go thru with it be ready there is a weird exhaustion an though i knew it was coming it frightened me
There is also a cream that is wonderful an you can't get it at the hospitals and if you do not have the money for it they will help you That cream saved me! I would start with it from day one using it