scan time...how soon...

[jessica]

Okay, it's scan time again...at least I want it to be scan time! Would love your opinion...
I've been on TCH for 6 weekly cycles & my anxiety level is sooo high I've asked my onc to do my PET scan now, instead of waiting the standard 8 cycles. I just don't think I can manage this level of anxiety for another 2 weeks, not to mention, I'm sick of feeling crappy. I'm ready to find out if I'm NED again & if not & God forbid, & there's progression, we've got to find another tx combo.
A little back-story on me...I was dx'd 3 yrs ago-Stage IV at primary dx. Tx for 49 weeks the first year, NED for 1 yr, but then a single spot recurrence in my liver last Sept-a very stubborn spot. 4 weeks of TH til NED, but it came back 8 weeks later.We RFA'd the majority of it, but the edge of the lesion is close to a major vein & that bit couldn't be ablated. So it's actually a SLIVER of the lesion that wasn't ablated that we're wrestling with.
To make matters a bit more complicated, I did do 3 cycles (over 9 weeks) of Abraxane/Herceptin, but on the 3rd cycle discovered they were dosing me incorrectly-disproportionate (not enough) Abraxane to Herceptin. As a result, there was little response- only a slight decrease in metabolic activity but also a new questionable lung nodule popped up.
So that brings us to these past 6 weeks of TCH... I'm ready to find out what's going on & my doc is trying to talk me into waiting to give the chemo "time to work"...It's a sliver of a 3 cm spot!!! Shouldn't 6 weeks be sufficient time to see response?
I'm anxious & freaked out & I just want to know NOW!! I can barely handle the thought of getting another scan report that says these past 6 treatments have been ineffective too...I feel like I'm being a "problem patient" asking them to do this scan 2 weeks earlier thantheir standard.
In many ways, dealing with all this stuff has gotten harder in 3 years not easier. I just know there isn't enough xanax to sustain me for 2 more weeks!
Would love your feed back...
Prayers, Faith & Courage!

[Pam P]

Jessica --

I know exactly what you are describing about the anxiety. The waiting, unknowing is one of the worst things to cope with I think. I'm sorry you have gone through so much. My comment for you would be to consider delaying the scan for 2 more weeks like your onc. suggests. My reason for saying that is you had your last scan 6 weeks ago. My onc. says it doesn't do much to repeat scans sooner than 2( or 3) months because whatever might be changed will take time to show up significantly on the scan. For you, I would hate to have the scan show a disappointing improvement now, when maybe giving it the added 2 weeks would show significant improvement --- the NED you are waiting for.

I have a PET scan coming up on 7/6 and am already turning into a basket case worrying about it.

Don't ever feel like a 'problem patient' -- we need what we need. And we have to be our own best advocates. So, you need to push for what is best for you -- both physically & emotionally.

Take care & good luck with your decision. Pam

[jojo]

Hi Jessica,

I would be very anxious if I were in your shoes -- probably only because you ALREADY had a bad experience with your medical team, the dosage error! I am quite sure that your anxiety level would not be this high, had you never gotten the mistake in the 1st place. So, your anxiety is probably stemmed from that experience, maybe??... :-( Nonetheless, you are very normal! :-)

Cancer is no fun!! :-(

Also, keep in mind that a PET scan does not pick up any abnormal cells smaller than 1 cm or so. I cannot remember the exact size, but anyone else is welcome to correct me!

I would wait for 2 weeks to have the PET... Try to distract yourself with a happier thought or project to do, if you find yourself pondering over the PET. You know the famous saying: "A watched pot never boils." Very tough to do that -- I know -- but you CAN do it!! Hang in there, girl! (Easier said than done)

Remember, you are NOT alone! We are here with you.

Good luck in your decision. Drop an update soon.

Keep up your faith & courage! Hugs ~ JO.

[Christine]

Jessica

I realize your anxiety is high before your scan, but you may be getting a preliminary look at the success rate for the 6 wk tx. If it looks stable or in remission, maybe more could resolve the tumor cells better.

Recently, at my request I have been tested with new her2 serum test to monitor the decease or increase in the her2 neu available in the blood. By doing this and seeing it's accuracy, I feel the Onc would be able to use this test as another tool to determine the drugs potential to continue it's use after 2-3 months. It is new and FDA approved. My insurance is covering it along with the usual tests.
I knew my test result would be in the normal range, but would like to contiue to see if the range can be volital within the normal reference range. Perhaps you can someday ask your Onc to use the HER2serum teats to monitor his her2 patients. It is only a simple blood test and can give the Onc and the patient a good indication of treatment response.

Good luck,Jessica! Awaiting good news. Hugs, Christine

[Lisa]

My advice? Take 10 very deep, slow breaths.

This cancer journey, experience, whatever you want to call it, is like riding a roller coaster in the dark. You never know for sure what's over the next hill. And, unfortunately, for most of us, this will be a very long ride. Your onc is probably right to wait. Even if you had the PET scan today, cells that were invisible now could show up during a scan next week. That's the nature of the beast.

Please remember that fear killed Chicken Little, not the sky. Find your own personal way to calm the fears and ride out the hills. And if your trust your onc, listen to his/her advice. Of course, the mistake in dosing doesn't help.

Best wishes.

Love and light,

Lisa