Topic: 1 year ct scan clear---need advice

Hi all!  If you remember me, I am 32 yo.  I had intrahepatic cc, underwent a resection may 2011 with clean margins at UPMC.  Received adjuvant chemo and radiation.  I just recently had an ovarian cyst removed that was an endometrioma.  I had my 1 yr ct scan of chest, abd and pelvis and it was normal!
So, I saw my surgeon and he said I don't need another scan for 6 months.  I have not seen my oncologist nor my radiation oncologist yet to see if they agree with this.  What does everyone think of this?  Am I ready to go to scans every 6 months?  My main concern is, though I'm one yr cancer free, I have only been off chemo since the middle of February.
How often should I get bloodwork?
Should I get my port out??
I will discuss all of this and more with my Dr's but just looking for some opinions...

Take care!
Susie

Re: 1 year ct scan clear---need advice

Hi Susie Q and once again big CONGRATS to you! Teddy went to the ONC every 3 months with LABS done the week before. He had PETS every 6 months. With my Cancer, while it is also rare and was in the stomach I see the ONC every 3 months
with CT Scans every 6 months and again LABS a week before each ONC visit. Also I feel it would be more up to your ONC than the surgeon as he is the one who will be standing by watching you. And as you already know best of everything to you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by PCL1029 Wed, 06 Jun 2012 20:45:30)

Re: 1 year ct scan clear---need advice

Hi,
As you may know ,I am also a pt of intrahepatic CCA .My schedule for lab work which included CBC,BMP,phosphorus and magnesium every month along with CEA&CA19-9; CT scan every 3 month and oncologist office visit every month.
I am currently on Xeloda, cycle#9 .
And please remember , the recurrence rate is high on CCA.(about 75%). I have already recurred once after 14 month on Gemzar and recurred 6 month after stopping of Gemzar. What I mean is that you have to be vigilant to keep an close eye on your treatment, and if it comes back, do not be afraid to step up and fight again knowing that you have tried your best and you will not regret if otherwise.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: 1 year ct scan clear---need advice

Congratulations, Susie! So happy to hear about the clean scan. Here's the picture of me doing the cartwheels smile

http://i.imgur.com/LpRU9.gif

(okay, okay, it's not really me. I have a head full of hair. My midsection is a lot slimmer too)

If you remember my wife's case, she is right behind you on the journey. Surgery in July 2011 followed by radiation and chemo. Her last scan was early in April. The next one is on July 4th, a regular work day here in Canada. 3 months in between.

The last time we saw our oncologist, he said he wanted to scan her every 3 months because she is such a high risk to relapse (due to positive margins and nodes). At some point we might reduce the frequency of the scans. In my wife's case, I wouldn't be comfortable going from 3 months to 6 months right away. Maybe 3 months to 4 months to 6 months. Can't really comment on your case, because your risk factors are not the same. Listen to your heart and do what feels right to you.

My wife kept her port for now. The oncologist said let's wait for another clean scan; if the scan in July is clean, get the port out. My current thinking is... the port doesn't seem to bother her in any way, so why rush to get it out? It only requires one flush a month... not a big deal. I admit I'm superstitious about it. I'm afraid that removing the port too soon might jinx her.

Best wishes,
Eli

Re: 1 year ct scan clear---need advice

Hi,Eli,
I cannot resist to comment ,I think that guy is actually you, bald and fat, Ha,Ha.
Nicely done ,I enjoy it so much.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: 1 year ct scan clear---need advice

Percy, you can't be further from the truth. I have a body complexion of a q-tip big_smile

Glad to hear that you enjoyed the cartwheels I did for Susie! Clean scan, that's fantastic.

Re: 1 year ct scan clear---need advice

Susie,

I had a whipple at the end of 2009 and 6 months of gemzar at the beginning of 2010 and I go to see the oncologist every 3 months with labs and started with every 6 months of scans.  Then I had a little scare which turned out to be nothing, but we went on 3 month scans and appointments.  I have a scan next week and if everything is fine I hope to lengthen my scan to 6 month intervals.

I think you have to do what makes you feel comfortable and your doc agrees to.

Congrats on the clean scan and keep 'em coming.
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

8 (edited by jathy1125 Thu, 07 Jun 2012 16:23:31)

Re: 1 year ct scan clear---need advice

CONGRATS!! Sooo excited for your year birthday. I do blood draw every monh and scans every 6 months. I have my oncologist and liver doctors scheduled so someone sees me every 3 months.
I think if you have to ask about time between appointments means you are not comfortable going 6 months between visits. I would stay on a 3 month schedule for your peace of mind and that is the key to good health, being proactive. I am sure your oncologist will understand. I remember my first week of no doctor appointments, then my first month.... very nerve racking. I actually missed my oncologist appointment this month (woops), hows that for making cancer an after thought!!!
I am very superstious and would have kept my port, but I went septic after second transplant. I was so devasted for them to take it out!!
Lots of prayers-Cathy

Re: 1 year ct scan clear---need advice

Susie,  Sorry can't give any advice about scans but just wanted to say congratulations on one year free!
Eli, Looking forward to seeing more cartwheels when your wife receives her year clean scan in July!
Randi, Keep us posted on your scan, so we can do cartwheels too! Love cartwheels!
Hugs to all. Nancy

Loving my husband from afar.

Re: 1 year ct scan clear---need advice

Hi Susie,

So glad everything is going well for you. We haven't been through this with Lauren, but common sense to me would be every 3 months. Then, if something did show up, you could nip it in the bud quickly. I am so happy for you.

Eli- Love the cartwheel man. That is so awesome. Really cracked me up and I sure do love a good chuckle.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: 1 year ct scan clear---need advice

Susie:
I am so happy to hear your good news. I thought 3 month scans for 2 years was the norm. THEN depending on your particular conditions and doctors, you MIGHT get to go to 6 month scans.
Go with what you want and how you feel about it. But personally, I would rather tempt fate with more CT scans than tempt fate without them. Then again, I know IF I get the surgery, I'll never have clean margins so I KNOW I'll be one of the glowing people for years to come.
Hugs and happy birthday!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: 1 year ct scan clear---need advice

Hi all.  I met with the oncologist and radiation oncologist.  Both wanted a scan in another 4 months.  I got bloodwork, which was pretty good. My oncologist said I can have my port removed, but I said let's wait until after the next scan. 
Be well everyone and keep the prayers coming! 

Susie

Eli, how is your wife feeling these days?

13 (edited by eli Tue, 19 Jun 2012 22:13:37)

Re: 1 year ct scan clear---need advice

Susie, she's doing great but that's all I'm going to say for now. Don't want to jinx her by going into details. Our next scan is coming up in two weeks.