PET Scan and Results

Hello from San Fran!!  

It is a beautiful day here and everyone is dressed in Giants gear  - so excited for the game tonight!

Your Support 

There is an over whelming amount of support coming my way from many different avenues.  From cards, to e-mails, to Facebook posts, etc.  It is undeniable that so many of you have me and my situation on your minds.  I am forever grateful.  My last post Disappointing MRI Results, has received the most views out of any of my previous posts to date!  Thank you.

Look out San Fran, we're here!

Nate and I arrived in San Francisco on Sunday.  He is in town for a Doctor's convention, so it worked out perfectly with the scheduled scan date and him already having a hotel room booked.  I always take photos of the bridges when we cross them!!

Yesterday, I woke up bright and early for my scan.  I took my first Cab (Uber) ride by myself, over to the Radiology center.  I arrived at 7am to check-in.  I went immediately get set-up with an IV, then they bring in the radioactive sugars in a metal box...

It is so interesting to me that even the syringe is incased in metal... but, somehow its ok for my body?!

I did really well with the Radioactive sugar injection and I didn't barf (last year I got really sick).  After waiting a hour for the sugars to metabolize, I was taken into the chilly exam room.  I was placed in position and propped up with various foam wedges and warm towels....Lets just say it took minutes for me to fall asleep!  Before I knew it the scan was over!  This time around, everything seemed to go much faster.  Maybe I'm an "old pro"by now?!!  Afterwards, I had a bagel sandwich and made it back to the hotel where I slept for most of the day.

Let's here some GOOD news!

Today, Nate and I woke up very early again.  My Doctors appointment wasn't until 8am but, I really wanted to grab a cup of blue bottle coffee first.  It is The. Best. Coffee. The End.

We arrived at UCSF Helen Diller comprehensive cancer center 10 minutes before my appointment.  I filled out all of the paperwork and we waited.  At 9:40, we were taken back into the room.  After some time the resident came in to conduct the initial exam and assessment.  

The Resident pulled up my PET CT images and I immediately saw two areas that were 'glowing'.  My heart sank.  From where I was sitting, I could read what he was typing.... My heart sank again.  Nate saw my face and decided to get up from where he was sitting and stand in-between me and the Resident!  He has said from the beginning that it doesn't matter what anyone else says except for Dr. O'Donnell - and he is right.  There he stood...and thought he was so funny!!  He always knows how to make me laugh!

After more waiting time, Dr. O'Donnell came in.  He examined my enlarged lymph node, my leg, and my range of motion.  He examined the area where the tumor was removed and all of a sudden, he touched an area that was very, very tender.   I never realized this.  He said, "This feels very full."  He and then sat down and started typing. 

After quite some time of him reviewing the last three months of my scans and comparing them to my PET CT scans, he then turned to talk with us. 

Assessment and Plan

Good news, he told me that the Fluid collection has shrunk!!  I am not in as much pain as I have been.  I haven't been pushing it too hard in the gym either, and I've noticed that it doesn't hurt as much.  He told me that constantly in the last 3 scans that I have had, they have all been consistent in noting that the size has shrunk!!!  Yayyyyyy!!  It was 7.4 cm (August 21st), 6.9 cm (September 30), 5.5 cm (October 5), and 3.9 cm (October 27).

More good news... Dr. O'Donnell told me that most likely my lymph node (1.6 cm)  is not cancer as it didn't glow in the PET CT scan.  Personally, I have noticed that it has shrunk.  Dr.O'Donnell told me that I also have enlarged lymph nodes in my chest (armpit area).  He will follow-up with these in a follow-up CT.

He told me that there is a ring of enhancement around the "Popliteal cystic fluid collection/mass".  In the past, the Sarcoma Board has thought that this area; the cyst and the tissue around it, were consistent with a Seroma.  He told me that when I had a tumor last year, the entire area lit-up with the radioactive sugar injection.  Visually, It was the shape of a potato.  However, this time the PET CT lit-up an area in the shape of a doughnut - Just the outer ring.  The cyst in the middle did not - it was still dark.  Because of these differences he is not certain that it is Sarcoma again!!!!  Last year, when I got the PET CT scan of my tumor the glow could be rated at a 1.5, however this area has now given a glow at 4.2 (much brighter).  He told me that he will be bringing these images to the Sarcoma Board on November 14th for further review.

Dr. O'Donnell told me that the second spot that glowed from the PET CT was the area in my gluteus major muscle (my butt) - more specifically my trochanteric brusa.  He told me that this could just be inflammation!!!  He's concerned with the fact that it glowed on the PET CT scan images. However, he wants the Tumor Board to review this as well.  Before the Tumor Board meets again, O'Donnell wants me to get another Pelvic MRI.  He wants it done at University Imaging.  This is the same place that I had the Pelvic MRI done last year.  They are also the place where I had my most recent MRI scan where O'Donnell raved about the quality!

He told me that I have a stable lung nodule.  It is abnormal (not sure what that means), but it is still 4mm.  

More Scans

O'Donnell told me that he would like me to "Take the Holidays off" from scans.  He wants me to get another Chest CT and MRI at the end of January.  He told me that he wants both of these scans done at UCSF.  He requested the MRI be completed on a 3-T (high-powered machine) again.  

Keep Praying!

O'Donnell told me that he would call me after the Tumor Board meets on November 14th. When I get back home, I will rush to get the Pelvic MRI completed and overnight the images to O'Donnell so that he may review them and bring them to the Tumor Board.

Thank you SO much for your support.  I think Nate and I were hoping for more conclusive result but, Im very thankful for how through Dr. O'Donnell is!!!  I really happy the cyst is shrinking and I have positive hopes for what the future brings!!  

Thanks for reading!

Disappointing MRI Results...

Good Morning and Happy Monday!

I hope you had a great weekend!  I got to watch my sister's daughter, Brooklyn, and she wore me out!!  We danced, decorated halloween cookies, went to the park to play, and had a wonderful time!  I love her kids so much, it's hard to imagine the love I'll have when I have my own!

I had my "High powered" MRI completed in Sacramento on September 30th.  The next day, Nate and I went out of town for my State Farm Agency convention.  The convention is held in Las Vegas every three years.  There were 12,000 Agents and guests in attendance!!  State Farm did a really good job showing the financial strength of state farm and getting us really excited for what the future has in store! It was a much needed distraction because I was in Vegas it took away from the urge for me to want to call the radiologists EVERYDAY for results!!

Nate and I in Vegas

As a patient, the Radiologist's report is not available until a week after I have my scan!  They set this rule because they want your Doctor to be able to see the report first, look at the images for themselves and then call you FIRST with any news; good or bad.  Dr. O'Donnell is VERY thorough - which a lot of time will lengthen the turn around time for me to get the results.  Even though they get the Radiologist findings within the time frame, they still ask me to overnight the images.  He then will review the images himself.  He will also have his Radiologists review my images and compare them to my previous scans.  THEN, he will call me.

I did call UCSF bright and early on Monday morning after returning from Las Vegas, October 6th!!  I called Dr. O'Donnell but, they don't get in until after 8am, so I sent them an e-mail.  I have found that e-mail works great as an alternative communication method and the staff at UCSF is VERY good at getting back to me; either with a phone call or a return e-mail.

Nurse Carrol called me back and told me that they had received the report but that they wanted to see the scans (no surprise here).  She wouldn't tell me what the report said - only that I needed to overnight the scans ASAP.  Her not telling me what is on the report is a red flag to me (Nurses can't tell you anything bad - only a Doctor can).  So... since it had been a week, I called the scan facility and asked them to fax a copy of my report (radiologist findings) to my office.  When I got into the office, the report was waiting for me.  I wasn't happy with what I read... (I paraphrased the findings below)

1. Abnormal T2 signal with enhancement... concerning for Sarcoma.
2. Large Seroma with irregular peripheral enhancement.  Inflammatory/infectious process must be entertained but this area may be involved in the Sarcoma.
3. Abnormal signal with linear enhancement adjacent to the inflammatory Seroma.

Ummm... Did I read SARCOMA???!!!  Clearly a typo - right!!?  We knew about the Seroma (pocket of fluid) for a while but, Sarcoma?  Let's just say I agreed with Nurse Carrol - that the Dr. needed to see my images right away!!

I overnighted the images and then called the very next morning just to confirm hat they received the images.  Nurse Carrol told me that they have the images and they are getting them uploaded and that as soon as Dr. O'Donnell reviews them that she would call.  Since Ive been having a lot of pain in my leg (upper thigh, knee, and foot) she then suggested that I go to the ER to get checked for a possible blood clot.  I never like going to get checked for a blood clot because it takes forever and I was pretty sure that I didn't have one (Not the same type of pain)!!  But, I went anyways.

At least I come prepared!!

Nurse Carrol called the next afternoon.  She told me that I have the Seroma (that we all knew about).  She told me that the Seroma has moved!  It was in my incision area - on the inside part of my right knee area.  However, now it has moved the the right side of my back right knee area.  She told me that the Seroma relocating could be causing my pain because it could be pushed-up on a nerve or two.  She told me that Dr. O'Donnell said that they tissue around my Seroma is changing but, that they are not she what it is changing to.  She told me that it could be inflammation, infection, scar tissue, or Cancer.  She told me that Dr. O'Donnell doesn't seemed too concerned since I already have a PET CT scheduled for October 27th and they will wait to see what it says.  She asked me not to over stress my knee area with working out too much.

Later on in the afternoon, Nurse Carol called back and told me that they received the results from my ultrasound for the blood clot.  She seemed really concerned.  She told me that Dr. O'Donnell asked her to call me back.  She told me that the ultrasound identified a big enlarged lymph node in my right groin area.  I asked her if I could feel it?  Because I could feel something like a jelly bean in that area that has been causing pain down my leg.  She told me that when it gets to be the size it is now, that YES I could feel it.  She told me that O'Donnell was concerned with the enlarged lymph node.  She told me, "We will be monitoring your PET scan results very closely now."

I wish she hadn't said that last statement.  I think they would have watched it closely regardless, right?  The last statement had me worried.  So, of course I Googled it!  Im pretty sure Google should be disabled for Cancer patients - seriously!!

In researching the new finding of a enlarged lymph node, I found results for infection and cancer.  The good news is that only 10% of the time my cancer spreads to the lymph nodes.  As far as Cancer goes, that is NOT very much.  It is also highly unlikely because of how 'low grade' my cancer was.  At this point I sure am hoping that is it NOTHING!!!  Or just inflammation (that would be nice too).

I know this goes without asking but please pray for my upcoming scan next Monday on October 27th!  Pray that no evidence of disease is found.  Pray that I get to move forward from this chapter in my life!

My-my-my-my-SEROMA!

Good Morning!  I hope you are having a good day! Nate grandparents are in town visiting us and we've had a blast celebrating Grandpa's birthday!

I wanted to take a minute to update you since my last series of posts.  This is an update from September and the follow-ups from my regularly scheduled MRI.

Too many cases, not enough time!

After completely bugging O'Donnel's staff with my phone calls, they called me back!  Unfortunately, at the Sarcoma Board on Sept 12th, they were set to discuss three cases and were only able to review one.... My case was not the one they reviewed.

Can you imagine having a case so complex (Im assuming), that it takes some of the best doctors, radiologists, surgeons, over three hours to discuss!?  I sure hope that patient is receiving the care they need.  Nurse Carrol told me that they would discuss my case in two weeks at the next Sarcoma board meeting on September 26th.

Results from the Sarcoma Board on September 26th

Dr. O'Donnell was able to present my scans at the Sarcoma Board on September 26th!!  He called me to tell me that the Radiologists were able to review my scans and told me that I have a Seroma that is getting bigger and that the area around the Seroma appears to be inflamed, scar tissue, or infection.

He mentioned nothing about the additional spot on my lung.

He was concerned that I am having more and more pain in my leg.  He ordered another MRI on my right leg!  This is the scone MRI in three weeks!  He told me that I can get the MRI done outside of UCSF as long as I am able to request the high powered machine (T3). He also requested that the MRI technician focus in only on my right knee area - he doesn't need to see two legs in the images - he wants the machines entire strength to give the clearest images possible of whats causing the pain in my right knee.

Thank you for reading!

No news... is good news?

Good Morning!

I hope you all enjoyed your weekend!  Nate and I went golfing and then spent the weekend in Truckee with friends.  We had a GREAT time.  I was happy that we were back with enough time to still get our laundry done for the week and watch the 49er game!

Recently, I've noticed the views on my blog start to tick up and I've received a lot of text messages from friends wanting to know if I've heard anything yet.  I figured I would update everyone with a post.

UCSF Sarcoma Board

Last Friday, Sept 12th is when the Sarcoma Board was going to review my scans and let me know if there is anything to worry about.  Dr. O'Donnell did tell me that he would call Friday after the meeting, or over the weekend, or the following week.  What a large rage of dates!  As of today, I still haven't heard from my Oncology Surgeon.  Boooo!  I had my phone on all week just waiting for it to ring with Dr. O'Donnell's name, but no such luck!  Im hoping that no news, is GOOD NEWS!

This morning, I called UCSF and they were still closed.  So I e-mailed Dr. O'Donnell with a friendly reminder.  Hopefully, I'll know more soon.

Pain in my Knee

As of the last week and a half, I have been experiencing some pain in my right knee area again. Not in the same spot as my incision though. This pain is not the normal sore/tight feeling I have daily in my leg (quite frankly, I've gotten used to that pain). This is different. The back of my knee area, towards the right side of the crease, is really tight and painful.  I notice it more when I straighten out my right leg. In fact, Nate (my husband) has told met hat he can feel a difference and he can visually notice it too.

I also e-mailed Dr. O'Donnell regarding this pain.  I just want to make sure it's nothing to worry about!

I'll update you all as soon as I hear!  

I hope you have wonderful Monday!

Follow-up Oncology Appointment at UCSF

I hope you're having a great day!!

This post is a continuation of my last post. I just obtained copies of the Radiologist findings/reports from my follow-up CT scan of my chest, and my Right leg MRI... and I didn't sleep well the day before this appointment!

UCSF, Here we come!

I'm always excited to see Dr. O'Donnell, Last Thursday, September 5th - I was even more excited.  After reading the radiologist findings, I couldn't wait to see him and see what he had to say!  I was hoping that the Radiologist reports were wrong!  Read my last blog post HERE.

I woke-up at my normal 5:30am time and went to the gym.  This has been my routine since finishing up Physical Therapy in April.  I went to work and came back home around 11:30.  Since you can never predict San Francisco's traffic, Nate and I like to leave early - better safe than sorry.  Im so thankful that I have my husband to drive me all the way out to the city!!

I wore yellow for my appointment - since yellow is the ribbon color for Sarcoma and because Im stronger than Sarcoma!!!

Follow-up Appointment

My appointment was scheduled for 3:10pm and we arrived in the waiting room around 2:30pm.  I was called back almost immediately for my vitals (blood pressure, heart rate, weight, etc).  I returned to the waiting room until a room opened up for us.  Tuesdays and Thursdays Dr. O'Donnell is 'in clinic', which is fancy for 'he's seeing patients and not doing surgeries'.

The current Resident came in first to examine me and start the log notes for Dr. O'Donnell.  I can't tell you how many Residents we have met during my treatment at UCSF, but its been a ton!  Since UCSF is a school, they do a ton of teaching and it's nice to know that they are learning from such a specialized surgeon like Dr. O'Donnell!

Dr. O'Donnell came in an also examined me.  He told me that the Radiologist who typed up my reports didn't compare the images with my last scans.  He seemed irritated that the MRI images weren't done on the high-powered Tesla 3 MRI machine, instead they were done on a Tesla 1.5.  He told me that in the future he wants all of my scans done by UCSF.  He told me that he was trying to work with us to minimize the drive time but, that from here on out we will need to drive out to UCSF.



Dr. O'Donnell's summary:

1. Dr. O'Donnell told me that my thymus wasn't a concern to him.  
2. He told me that he did notice the extra nodule (spot) on my scans.  
3. He also told me that there is now a 3.5-mm bone island on my T-11 vertebral body but, that the images aren't showing a lesion into my bone.  This is good because it is not a concern at this point.  Read about the dangers of a Bone Island HERE
4. He told me that my Seroma has doubled in size and that I have more fluid on my knee than before.  He confirmed that the Seroma has an irregular thick advancing wall and it is giving a bright T2 signal on the MRI (same brightness as my Cancer showed before). 

Sarcoma Tumor Board

Dr. O'Donnell told me that he would like to present my scans to the sarcoma tumor board that will be meeting on September 12th (Next Friday).  He told me that they have the BEST Radiologists and Sarcoma specialists.  He would like them to review the images and he told me that he would call me that Friday or over the next weekend to let me know what they discussed.

Read more about the Sarcoma Board HERE

PET CT Scan

Dr. O'Donnell also would like me to come in for another PET CT scan.  Since over-radiation is a concern (I just had a CT scan done a few weeks ago), He recommended that I wait until next month to get my PET CT scan done.  He added that he might have a hard time getting the PET scan pushed through insurance if we don't wait until next month, because they only pay for one per year.  He looked at my file and realized that the last PET CT scan that I had done was October 25th, 2013.  He told me that he would have his assistant schedule me right after this date so that we wouldn't get any push back from insurance... PERFECT TIMING!

Read more about a PET CT Scan HERE

I was able to talk to Dr. O'Donnell's assistant on Friday, and I have a PET CT scan scheduled for October 27th with a follow-up appointment on the results scheduled for the very next day on October 28th.  Dr. O'Donnell doesn't wait for anything!!!

At this point I don't have anything conclusive to report until after the Sarcoma board meets on September 12th.

I'm hoping an praying for good news!!

Thank you for reading!

3-Month Follow-up Scans and Results!

I hope you are enjoying your Saturday!

I woke up this morning with a sore throat.  I've been taking it easy today and though I would update you on my most recent scans.

MRI & CT Scan

Towards the end of August, I was scheduled to get my follow-up scans. I got the MRI of my right leg and a Chest CT Scan at an Imaging center up in Auburn.

I had to get both scans on different days due to the different contrast fluids that they inject me with.  For the Chest CT, they inject me with iodine.  If you have had a iodine contrast injected in you before then you know the almost indescribable feeling!  You get hot in your throat, then it burns, then it travels down your body, then your left feeling like you peed your pants!  So weird and so funny all at the same time!  

My Mom was kind enough to drive me to these scans.  Dr. O'Donnell gave me a prescription for Valium for these days that I have scans.  The Valium helps me relax, since I'm in a small tube for up to 90 minutes!  I certainly cannot drive to or from my appointment.  Anyways, I'm very grateful for my Mom for always being there to take me!

Copies of Images and Reports

Whenever I have scans, I always get copies to bring with me to my Oncology follow-up appointment.  Dr. O'Donnell likes to have a master record of all of my scans on file.  I'm never able to get copies of my reports (Radiologist findings), until it has been over 7-days.  This is because they want the chance for my doctor to read them first.  Typically a patient would have a follow-up appointment within a few days of the scans, so you can hear it directly from the doctor - instead of reading them yourself.  There is definite ups and downs to the procedure!  I always like to know ASAP - good or bad, I just want to know.  Its the waiting that kills a person!

This time since my follow-up appointment wasn't until 10 days after my scans I was able to get copies of the radiologist findings prior to my appointment.  Here is a summary of the findings...

1. CT Scan
1. An additional spot was found in my lungs.  The original 'spot' was found on my left lung measuring 4mm, the second spot was found on my right lung measuring 3 mm.  Still very tiny, but concerning that there are two now.
2. "Probable residual thymus".  Read about a Thymus HERE.
2. MRI of Right Leg
1. The Seroma in my Right knee has some "irregular advancing tissue" and they are unable to rule out a 'residual tumor' at this time.

Lets just say I didn't sleep very well before my appointment on September 5th!!

"But those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

Thank you for reading!

Results are in... Decliared N.E.D!!

It has been approximately 4 months since my last blog post and 3 months since I heard some great news!

Sweet Victory!

I have some FANTASTIC news to share with each one of you!  On May 6th, 2014 At my Oncology follow-up appointment, I was declared NED (No Evidence of Disease)!  The results came back and showed no evidence of Cancer anywhere!  BOOHYA!

Im considered NED!!  I've waited so long to hear those words!!!  What a relief.  I will be considered "Cancer-Free" once I have had clear scans for 5 years!!

What to do with the Seroma

Of course, I asked him about getting the Seroma out of my leg.  Dr. O'Donnell explained to me that when a large tumor is removed from the body, after they sew up the incision, there is a large hole where the tumor once was.  The Seroma is a pocket of fluid that forms in that hole.  He told me that approximately 5 years ago, whenever a patient would get a Seroma in their leg - they would stick a needle in it and test the fluid to make sure there are no cancer cells in the fluid.  He told me that 100% of the time there were no cancer cells.  He said that it is very rare in medicine to get an absolute 100% no cancer cells, therefore he is certain there are not cancer cells in the Seroma.  He told me that mine isn't infected.  He told me that with time, mine will just absorb into my body.

Can we have babies now?

My husband and I have been waiting until after this cancer situation is resolved to be able to start a family.  Since My scans came back clear, we wanted to know if now we could start trying.  Dr. O'Donnell told me that he really doesn't want me to get pregnant because when I'm pregnant he wouldn't order any scans on my body.  He told me that he follows the stage of the Cancer as a rule.  For example, if I had state 2 Sarcoma, I would need to wait 2 1/2 years.  If I had state 3 we would need to wait 3 1/2 years.  He asked me to wait at least 12-18 months from when I finished up Radiation.  He told me that he would let us know when we could start trying.

Nate told me that we should use the next 12-18 months to travel and for me to build up my strength.  I finished up physical therapy in April and I was still really weak in my leg.  I'm looking forward to the traveling part of the next 12-18 months!!

Follow-up Scans

Dr. O'Donnell told me that 50% of the time, if the Cancer is going to come back - it will come back within the first 12-18 months.  He suggested that I have follow-up scans every 3-months for the foreseeable future.

Every 3 months I will have a MRI on my right leg.  Did you know that MRI's don't give off radiation?  They are even safe to get when you are pregnant!!  He will also monitor the spot in my lung too.  He told me that since the CT Scans give off so much radiation, he will alternate a CT Scan with an x-ray of my lungs every three months.  My next MRI and CT Scans will be in August.

Dr. O'Donnell is very thorough... If there is any residual tumor that the Radiation didn't kill, he wants to catch it early.  He had me think about it, and explained, if there are stage-1 tumor cells left behind, by the time he catches it growing, it could already be stage 2 or 3.

All and all, this was a day I will NEVER forget!  To hear the words "No evidence of Disease", was an unforgettable moment!!

Thank you for reading!