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!!

Cheryl

14 comments:

Ian Morton said...

You write so well, Cheryl. I am cheering for you very loudly as a result. (Hope I don't wake the neighbours!) TUTS is so lucky to have you. x Ian

Anonymous said...

crossing everything for you!Wouldn't you think if they want to take out the portacath, that they don't expect you to be needing it for any chemo in the near future?...Hope so...Love ~Deb

Anonymous said...

Cheryl, I'm so glad you sent the email to direct me to your blog. Thanks for the update and I'll anxiously be awaiting more news to resolve the mass mystery. You are such a strong woman and I know with all your great friends, you will prevail! :) Love, Lisa M

Anonymous said...

Cheryl, You've been on my mind a lot the past week or so... Thank you for the update.. You're a tuff cookie, cookie... My thoughts and all the good vibes I can muster, are with you chica...

Love, Kiki

Bonnie said...

Oh Cheryl, I'm sorry it wasn't better news. But at the same time I'm so impressed that these new fangled machines help find things in their early stages, when treatment will be affective. Know that you're always in my heart, I am keeping everything crossed that the next round of tests offers up solutions to your issues that can be resolved quickly.

Anonymous said...

Phew - that's a long entry. Good luck with all this and of course keep me in the loop. I feel a head shave coming on here!!!

Dave

Anonymous said...

Hi Cheryl. Thanks for sharing this news and for being so strong and brave. You have many old friends and new who are cheering for you. Count me in on the "old" category ;) and I will be sending you much positive energy.
Love, Karen K

Anonymous said...

Hello 669
Prayers are with you friend. You are a strong woman (humour and laughter are said to be pretty powerful medicine) Keep me posted... love ya'
376 (formerly 278)

Anonymous said...

Hi Cheryl,
Your note is definitely a mixed bag. I'm hoping the removal of your portacath is a positive thing. Not only to relieve the pain in your shoulder/arm, but because you won't need it anymore.
Please keep positive thoughts it's an endro problem and can be fixed with surgery and meds.
My thoughts and prayers are with you everyday.

Hugs, Maryann

Rich said...

well, if you can't figure out how to put up pictures of your test results, you could always put up more pictures of all the critters ;)

Kathy said...

Hugs, Cheryl! I can see how it's a really mixed bag. I have been sending lots of healing white light your way so we'll hope it does some good! Love ya!

Kath

Karen said...

Cheryl, Well, we'd like non-mixed results, but as you so eloquently said, this could be much worse, and in fact, it could be nothing at all! Here's hoping and praying that the lung spot is/was just a bad picture, and the old mass is just mucking up the new tests. I think the cortisol explanation might turn out to be a Godsend - how nice will it be to lose the excess cortisol and start dropping pounds like crazy, without even trying! I am visualizing that for you now. (For me too, in fact, but that's beside the point.)
Take care, we luv ya and are all in your corner! - Karen

Karen said...

Cheryl, Well, we'd like non-mixed results, but as you so eloquently said, this could be much worse, and in fact, it could be nothing at all! Here's hoping and praying that the lung spot is/was just a bad picture, and the old mass is just mucking up the new tests. I think the cortisol explanation might turn out to be a Godsend - how nice will it be to lose the excess cortisol and start dropping pounds like crazy, without even trying! I am visualizing that for you now. (For me too, in fact, but that's beside the point.)
Take care, we luv ya and are all in your corner! - Karen

Melinda said...

Cher's Oscar moment... And the winner is (da dee, da dum!) ... Scenario #1!!!! I can see it already. As always, thinking of you Cher and sending you good vibes :)