Friday, March 14, 2008

Friday, March 14, 2008 -- Pet Scan Results -- A mixed bag.

Dear Bloggy,

Yes, I know it's not Sunday and the last few entries seem to have been on Sundays, but since a lot of you knew I was meeting with Dr. Gill and the oncolology folk today to get the results from my PET scan, and then so many of you called last night or sent email... well, I simply have to just sit down and try and write this all down so I don't keep anyone in suspense (Ok, Jo was with me today and and since I've been home I've been on the phone with Steve, Dad, Michael P., my aunt Eileen who lives on Salt Spring Island and Doug, who I grew up with and he lives across the street... oh, and have seen in person Mimi who lives upstairs and Toby who lives across the hall from me), but NOW I'm going to type up the tonight's entry with a cuppa' tea :) Gee, do you think that sentence was long enough??? Could I possibly make it any longer???

A few things before I get into the nitty gritty of today's appt with Dr. Gill and Dr. Jennifer (I don't think I caught her last name). I do have a CD from the PET scan department and thanks to Roger Smith, I now also have the software to view these PET scan 3-D images. If I can figure out how to take the images and convert them into jpgs, then I will see what I can do to add them to the blog, but that will probably be a separate blog entry. Likewise, a few other odds and sods of what I've been up to this week, I will create a new blog entry for that chatter since I have a funny feeling tonight's blog will be plenty long enough.

Ok... here goes...

I got to the Cancer Agency at noon to get 3 vials of blood taken for the various tests that Dr. Gill had ordered. One of them is the Tumour Marker test that measures the level of CEA in the blood stream. As noted in previous blog entries, my CEA level in December registered as a 6 and in Feb as an 18. Both are considered slightly elevated with 0 being the ideal reading. Since my levels have been considered elevated, Dr. Gill ordered the PET scan which I had last Thursday and if you'd like to know what that is all about, the last entry was all about what a PET scan is all about.

After having the blood work done, I headed out for lunch and came back for my 3:15pm appt. to go over the results of the scan. Jo, who was working upstairs at the Cancer Agency, was to meet me in the waiting room on the second floor where Dr. Gill meets with her patients. Wouldn't you know it... the unit clerk came and got me EARLY, so Jo wasn't there yet! Now, in all fairness, I had it pretty much set in my head that the results were going to come back as negative and that, other than the relief of knowing nothing was found, it would have been a waste of this very expensive scan.

Luckily, Jo got there a little early so joined me in the examining room before the doctor arrived. Now, the doctor who came in, I have totally missed her last name... but her first name is Jennifer, so Dr. Jennifer came in and introductions were made. Dr. J was a lovely gal and I have to give her credit for being able to discuss and explain things in layman's terms, which she gets big brownie points for that. But I knew things were not going to be exactly the way I had expected them when I asked her if she brings good or bad news and her answer was, "Well, I'd say it's a mixed bag." To me, a "mixed bag" is NOT good news...

She said that the radioactive sugar substance used in the PET scan is absorbed by areas that show activity, be it "mestastic" or "metabolistic" (not sure if I have the spelling of either right). Something that is mestastic is usually a form of active cancer and something that is metabolistic has to do with one's metabolism. Either way, both absorb the radioactive sugar tracer and show up on the PET scan.

The scan showed a rather large (approx. 4") active mass/growth on the adrenal gland above the right kidney. It also showed a very small spot (I forget the dimension but it was small) on the lung. Their first concern is the adrenal mass. If it is cancerous, then it would explain the elevated CEA levels. What they feel will have to happen is that we get an Endocronologist involved to see if he/she can determine a plan of action. Will it be possible to surgically remove the right adrenal gland that includes this mass or is there some way of biopsying it if it can not be removed. To determine whether it can be removed will depend on a few factors... like is it easily accessible to the surgeon? After my surgery, radiation and chemo, is my body strong enough to withstand another major surgery? Is there another option that the Endo and/or surgeon can come up with? The growth is too large to get rid of with chemo, radiation or a combo of both... but if it can be surgically removed, then the followup plan would be to also go through chemo and possibly radiation again.

Needless to say, this did freak me out... I was NOT expecting this. Even Jo was taken by surprise and she came into the appt. open to whatever we might be facing. Dr. J. explained that this was a very rare and unique situation. Normally, when colon cancer spreads, it spreads to the liver or to the lung... very, very rarily does it bypass those two and spread to the adrenal glands. I asked how this could happen if there is no sign of cancer in the lymph node system and she said it's possible that it spread through the blood and not the lymph system. I then asked how come, when Dr. Brown (surgeon) who did my intestinal resection surgery, he found this adrenal mass and went back in the archives to the previous surgery (hysterectomy) I had had in 2001 and saw the same mass on those scans and since it hadn't grown in 6 years it was considered benign... now it is thought to be cancerous? Dr. J couldn't answer that so said that she would confer with Dr. Gill and Dr. Gill would be coming in to talk to me.

Well, it must have taken about 20 minutes. Jo and I discussed the reality (here we go again!) and even though I was shaken up, as usual, when under stress I tend to turn to humour. I told her that this surgery better be pretty quick because I'm not sure how much more I can milk getting attention from my friends or the gang down at TUTS... they might get tired of seeing me with a chemo pump again this summer. Jo said if she sees me down at TUTS with staples in my belly and chemo pump in hand, still selling those tickets, then she may reach her limit of how much a girl can take :) But, we also discussed the reality of not panicking and we are going to have to take it a day/procedure at a time and not to get ahead of ourselves.

After about 20 minutes (it seemed forever), Dr. Gill and Dr. J came into the room. Dr. Gill is so amazing!! No matter what, she has this way about her that I find incredibly calming. There's no doubt she is one extremely smart cookie, but even more, when a patient (me) is trying to deal with the fear of the situation, she has a way of talking and you calm right down.

She apologized for taking so long, but that I had brought up a very good point.. just how long had I had this adrenal mass and how long had my CEA levels been elevated? So the two of them went back through all my scans, the CT scans that I had done at the Cancer Agency in the last year and the CT scans I've had done at St. Paul's for both the surgery in Jan/2007 and back in 2001. The mass/growth has been around for some time... but my CEA levels have only shown an elevation since December 2007. Dr. Gill says that this changes the focus in a totally different way. She says what could be happening is that the mass/growth is what might be a "functioning growth" meaning that, since it is on the adrenal gland, it may be producing an excess of the hormone, cortisol. This cortisol hormone producing growth would also absorb the radioactive sugar tracer and could show up on the PET scan like it has and may not be cancerous at all. The key words here being "may not". So we are going to do a regiment of tests to see if I have an excess of the cortisol hormone... and if I DO, then this can actually explain a lot of things... like the muscle and bone pain I have been experiencing since November, and it would really explain my quick weight gains. The cortisol hormone regulates weight and pain management... go figure, eh??

So NOW, the plan is, like I say, to go through a heap of tests, more blood work, more tests and I believe we now get an endocronologist involved. If it IS a case of hormones gone amuck because of this growth, then the Endo guy/gal will be able to analyze the situation as to whether we remove the gland (one can function with just one adrenal gland) or regulate hormone production with meds or a combination of both (if needed).

As for the cancer issue, Dr. Gill says she is going to send me to a Lung Surgeon (Dr. Yee) and he will determine what we should do about the spot on the lung. There may be a variety of options from surgically removing it, chemo or radiation... but she's pretty sure that the plan would be to remove it surgically rather than give more chemo.

Meanwhile... since I have been having pretty intense pain in my right shoulder/arm, it's possible that it is one of the chemo long term side affects, but to try and ease some of the discomfort, she is going to arrange for me to have my portacath surgically removed.

Soooo, there you have it. It really is a mixed bag. On the one hand, the journey is not over yet... but on the other hand, it could have been a lot worse and at first, seemed like it was going to be a lot worse. Since nothing is specific and after the tests, things may change again, the good news is that I'm very hopeful that we will get over the silly old spot on the lung and the adrenal mass will end up being a functioning growth that we can stop/regulate. That will hit two birds with one stone... weight issues and pain issues!! So keep your fingers crossed that that is what it is and not something nasty :) Cheryl doesn't like nasty surprises!!

Ok... pretty long entry. I'm going to see if I can get the CD of the scans to work and if so, if I can convert them to images I can upload to the blog... but hey, that will be a separate entry :)

Ciao for now!!


Sunday, March 9, 2008

Sunday, March 9th, 2008 - Daylight Savings begins

Hiya Bloggy,

Well, here we are, the first day of Daylight Savings.... which is 4 weeks earlier than normal this year. For the life of me, I do not understand the reasoning for this. Actually, I don't really understand the need for changing from Daylight Savings to Standard time, back to Daylight Savings, etc. I understand back in the war, it was a big deal, but nowadays, it really doesn't make sense to me. I have read that, by starting DST 4 weeks early, the amount of barrels of oil that will be saved by businesses will be in the millions. But, personally, I just don't buy that argument. Businesses are still operating their business hours, whether it's light or dark outside... so how that one hour for 4 weeks is going to make any difference is beyond me. If businesses were to shorten their business hours by one hour each day, then that would make sense... but the fact it is or isn't light for that hour... hello? Anywho... today is the first day of DST and all I find it does is confuses the poor body :)

Well, I think I'm just going to babble here for a bit because... well, it's Sunday, it's been a week since my last entry, and, well, because I can! :) It's my blog so I can write whatever I want in it, right? And that means any of you stopping by to read it have to put up with my babbling. Muhahahahaha!! A captive audience!! :)

First things first... entertainment. In this past week I've been to a Birthday party for an old friend, Audrey Wills... and of course all of us who know her. This birthday was held at a wonderful Chinese restaurant, "Sun Sui Wah" at Main and E. 23rd Ave. What a fabulous restaurant... I highly recommend it to anyone who is tired of the usual okay Chinese food... the food at this restaurant is fabulous! There's nothing really around so I'm not sure why you would ever find yourself at Main and 23rd... but hey, it's worth the drive there just for the food!! And they certainly could cater to large groups. We had a private room off the main room and there were about 50 of us. Great time was had by all!

Last night, I was with Greg and Maddalena and we saw the movie "The Other Boleyn Girl". Wow! Fabulous movie!! I was in the mood to see a nice romantic, historical period film and this was far outdid my expectations. Natalie Portman and Scarlett Johansson were both fantastic in their roles. Only Eric Bana, as King Henry, was a little weak in my opinion... but his character needed a little more time to develop since, even for those times, I don't think he would have gotten away with how quickly he changed women. Yes, he did.. but in the movie it happened just a little too quickly. But, I highly recommend anyone to go see this film!

Now, entertainment aside, I went for my PET scan on Thursday. I'm going to put some info here about the PET scan that I have learned since it actually affects me. Amazing how you just take things for granted... until you need them, or they impact your life in some way.

A PET scan stands for Positron Emission Tomography. The PET scan procedure takes 2-3 hours in total. A PET scan is a powerful diagnostic test that is having a major impact on the diagnosis and treatment of disease. Because disease is a biological process, and a PET scan is a biological imaging examination, PET scans can detect and stage most cancers, often before they are evident through other tests. PET scans can also give physicians important early information about heart disease and many neurological disorders, like Alzheimer's.

A PET scan examines the body's chemistry. Most common medical tests, like CT and MR scans, only show details about the structure of the body. A PET scan is different as it provides information about function. With a single PET scan procedure, physicians can collect images of function throughout the entire body, uncovering abnormalities that might otherwise go undetected.

For example, a PET scan is the most accurate, non-invasive way to tell whether or not a tumour is benign or malignant, sparing patients the often painful diagnostic surgeries and suggesting treatment options earlier in the course of the disease. And although cancer spreads silently in the body, a PET scan can inspect most organs of the body for cancer in a single examination!

Now... here's an interesting bit of trivia. I'm not exactly sure when this "clinical trial" for the PET scan machine at the Cancer Agency began, but I know back in 2003/2004 when Kimberley was going through her cancer journey, the only PET scan machine in Vancouver was out at the University of BC Research dept. It was not covered under the medical plan so when it was suggested this might be beneficial for Kimberley, she had to pay out of her own pocket... $2500. Dr. Gill referred me to the "Centre of Excellence for Functional Cancer Imaging", which is right there at the Cancer Agency (although it is a separate department).

Here is part of what the form was that I had signed (which made me eligible for BC Medical to pay the $2500 cost):

"You are being invited to participate in this clinical trial because you are either diagnosed with or suspected of having cancer and your doctor has determind that you require a scan to provide additional information. If you agree to participate with this clinical trial, you will undergo a Positron Emission Tomography (PET) scan, using a radio-labeled tracer called F-Fluro-Deoxy-GLucose (or F-FDG). An F-FDG PET scan combines both a Computerized Tomography (CT) scan and a PET scan done on the same machine during one procedure. For the purposes of the rest of this consent form, we will refer to this combined scan (PET and CT using the F-FDG radio-labeled tracer) as an F-FDG PET scan.

Cancer treatment and outcomes depend largely on accurate diagnosis and staging of the disease. F-FDG PET scanning may more accurately characterize disease, or determine the stage and sites of recurrent disease in many cancer types compared with conventional scanning techniques (such as CT or Magnetic Resonance Imaging - MR(). The accurate functional information that is obtained from the F-FDG PET can have a significant impact on the management of some patients with cancer. F-FDG PET is used to provide accurate pre-treatment staging of tumors, to aid in planning therapy, to monitor the response to therapy and to provide assessment of restaging/recurrence after curative therapy. PET scanning is not considered an experimental technique, but is in a clinical trial for public funding by Canada Health and BC Medical."

So, there you have it... that is what the PET scan is all about and I will know the results of it on Friday. I have to go for more blood work on Friday, with one of the tests being my CEA levels to see if they are still elevated and if so, how high. Then the PET scan will have the results if there is any recurring cancer of any kind.

My friend, Jo, will be coming with me for that visit with Dr. Gill. As far as I'm concerned, the PET scan will come back clear and then we will also be able to breathe a sigh of relief that the "slightly elevated" CEA levels are really just normal levels for me. On the other hand, if it does find anything, then thank goodness for accurate PET scans because treatment could start immediately rather than wait until the cancer produces symptoms.

Ok... this has gone on way too long for one blog entry, but hey... I thought it was interesting stuff and hope anyone who is reading it will find it interesting as well. But now, with Daylight Savings, it is after 11:30pm. I didn't sleep all that well last night, so I think it's time for me to take Bridget out to the back lane and then we both are going to go to bed. She's already in bed... so I have to wake her up, take her out, then she can go back to bed :D

Ta ta for now!