Archive for January, 2009

Gyn onc last Friday

I’ve been really bad at posting lately, I know. I’ve been struggling with the difficulties of adjusting to pain meds and the various side effects and feeling tired and cranky. I didn’t want to just come on here and whine, I’m supposed to be really grateful right now, not whiney. I have been feeling better yesterday and today so am hoping that maybe my body is adjusting to the meds better now, we’ll see.

Anyway, I saw the gyn onc last Friday. He said I should stay on Megace “ad infinitum”, which sounds reasonable to me. He thinks being seen every 4 months is good also, and he agreed with my not having a scan till the appt. after next.

I asked him what he thought about the ca-125 (it being above normal). He wasn’t real concerned about it either and told me that it could very well be elevated because of all the radiation I’ve had (inflammation in the abdomen can elevate it). He also said we don’t know that it has any relevance for me anyway (since we haven’t been taking it since the original diagnosis, only in the last year). I think he probably wouldn’t even bother with it, in fact he never did bother with it, it was the med onc that has asked me to get the levels checked. Anyway, his explanation about the radiation made me feel better as that was just a niggly little doubt in the back of my mind. It’s an explanation that makes sense to me.

When I left I told him that I’d like to have a boring life from now on please. He agreed.


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It’s official!

I saw my med onc yesterday and he confirmed that the pesky tumor has disappeared from the ct-scan! So as best as can be determined at this point I am NED (no evidence of disease- which just means they can’t find any cancer which is about the best one can hope for) again! It’s truly amazing, I’m not sure I really expected to ever be NED again. Certainly my drs. didn’t give me a lot of hope towards that. But, as I told the fellow (the dr. who works with my dr. on a fellowship) yesterday at my appt., “I do cancer weird”. He looked at me oddly at first and then started laughing. But it’s true, nothing about my first cancer made sense, even the endo cancer was odd in how advanced it was at it’s first symptom, and to have this recurrence be in one lymph node for two years and not spread and then disappear? It’s definitely not following the cancer rule book. Not that there is such a thing, cancer pretty much does what it wants, but the odds are certainly not with you when you present with stage 4b cancer (my first cancer) or once you’ve had a recurrence (the 2nd cancer). It’s kind of what’s helped me keep hope through all of this, if I can be odd in bad ways, I can be odd in good ways too.

So I see the gyn onc later this month and he and the med onc will confer and decide what the plan is. For now I am continuing on Megace (the hormonal drug I’ve been on for the past year) and my next med onc appt. is in 4 months instead of three. The best part is that I don’t have to have a scan for that appt., he said I could wait till the appt. after that. Having scans is so stressful, being able to spread them out is huge for us, not to mention less radiation exposure and not having to take steroids to avoid the allergic reaction to the contrast dye.

There is a blood marker used mostly in ovarian cancer called ca-125 that has recently started being used in endo cancer. I didn’t have any ca-125 tests done in my initial diagnosis, but a year ago the med onc ordered one, and then at my last appt. ordered another one. I had this done last week, a couple days after my scan. The levels should be below 32 but a year ago they were 49 and this time 53, a negligible difference but both are still above normal. The med onc says he doesn’t know if there is any significance but that we’ll keep watching them so I do have to get that test done before my next visit with him. I’m curious to see what my gyn onc has to say about them. The other thing was the pelvic fluid which actually is what started this whole thing. Because of the fluid in my pelvis at my scan in 12/06 (which was spurred on by my back pain at the time) they did a PET scan which found the tumor, which they then were able to go back and find on the ct once they knew where to look. Anyway, they always said the amount of fluid was very small and they were not concerned with it, and this scan showed a decrease in the fluid, so again they are not concerned with it.

With cancer you are never 100% in the clear, but where I am now is pretty darn good and I’ll take it any day! I’ve had so many miracles in my life, Z. being born healthy at 29 weeks when at 22 weeks the pregnancy was in serious trouble and they told me they wouldn’t resuscitate if she were born then and if she did make it through the night she’d probably not make it past 24 weeks; my surviving stage 4b vulvar cancer with just chemo, which was only supposed to be palliative; and now this. But my joy is tempered by my sadness for all those who have not had such miracles, especially for my late sister Lisa who not only lost a child at three weeks old, but died from breast cancer complications when she was 41 years old. I am no more worthy or special than anyone else, I am not stronger or more positive or anything like that. I do feel that my good fortune is spread out amongst all who I care for and who care for me and I am grateful to share it.

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Happy New Year!

Z. put the New Year’s hats on the paper Xmas trees last night just after midnight. I thought they made a good picture to start out the new year.

So, for those of you who haven’t heard yet, I got good news yesterday morning when I got my ct-scan report. The report said:

1. No evidence of recurrent or metastatic disease.
2. Interval decrease in size of fluid collection in the pelvis since 9/17/08

and then farther into the report it says:

RETROPERITONEUM: Multiple surgical clips are visualized. No new enlarged retroperitoneal or pelvic lymph nodes.


Now, both A. and I stared at this as it came out of the fax machine in disbelief. What do you mean no evidence of disease? The tumor has been there, pretty much not changing in size for the last three scans. How could it possible disappear in 3 1/2 months? I know that the drug I am on (Megace) is not supposed to shrink the tumor the way that chemo does, but if the tumor were to die, it would do just that, just die. A couple of scans ago there was something about necrotic tissue in the center of the tumor but all the drs. dismissed that as not being important. We have really been lead to believe that the most that we could hope for was stability. I really am perplexed. Both A. and I keep harboring thoughts that the scan report is wrong, that it’s a different person (there is an error on the report, in two spots they say my diagnosis is endometriosis, instead of recurrent endometrial cancer- I did call them and asked them to fix that), but in the description they have who I am correct (51 years old and my past and current cancer history). It’s likely a typing error by the transcriber, I have had numerous people along the way try to put down endometriosis instead of endo cancer, but it does make one nervous about the rest of the report (although all the other things that reference previous scans are all correct). That is why neither A. nor I will be really confident in this news until I have spoken to my med onc next Wed. At that appt. he will sit down and view my ct. scan and the previous one in addition to the report, so I will have confirmation. He can also tell me what he thinks this means. Is it possible that there are cancer cells in the pelvic fluid? Should a PET scan be done to look for metabolic activity? Is this a fluke? Could I actually be in remission?

I guess an argument could be made for having the dr. give you the results rather than getting them yourself like I always do, but I’d much rather be wondering about this stuff than sitting here anxiously awaiting news for another week. I can’t even begin to tell you how difficult that waiting process is. Knowing, even if knowing isn’t complete, even if knowing isn’t necessarily good news, is so much better.

So, for now I am not really feeling excited, but I am feeling a sense of calm that there’s a really good possibility that I am going to be around a good while. That’s a real shift in thinking, so it will take some time to process that. It does make all the other health issues I have become more important. I feel like the rest of my body has rebelled this past year (much of this is from the medications I am on for the cancer and pain) and is way out of balance. I’m working on the pain med situation (I’ll save that stuff for another post) and am working with my internist on the other things. I am trying to give myself the space to work all this out in time, piece by piece, and stop panicking every time I get a bad reading. I’ve been reading lately about how cancer and it’s treatments can throw so many things out of whack, so coupled with my genetics, it’s no wonder I’m struggling with all of this.

Anyway, I am happy, it’s just that it’s all very complicated right now. I think others with cancer probably understand how getting good news doesn’t necessarily mean you are ready to start dancing in the streets. The skepticism is common and it will take time and more good scans to feel real.

So I’ll end this with a cute picture of Calvin. I can rarely get a good picture of this cat, I’m not sure why, but today he was very cooperative and gave me his cute pose without doing goofy things with his eyes. I love how he’s the same color as our floors.

Happy 2009!

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