Discussion with Onc and results of Pet/CT scan

polarprincess

Finished chemo in April. Recently had both a Pet and Ct done and was quite worried as i have had alot of back and abdominal pain and twitching, and even alot of muscle cramping and charlie horse like pain in my side and back muscles. All my liver enzymes are back to normal, my white blood cells are still slightly low as is my hemoglobin. cea 0.3 which it has always been so not sure if it is an indicator for me or not. I never had a pre-op cea. Both scans were normal and did not show anything except for a large abdominal ventral hernia and a smaller one next to it. She assumes this along with scar tissue and adhesions are the cause of my pain as she said the hernia can press on nerves. Despite how much it is bothering me, she wants me to wait a year to allow my body more healing before having it taken care of. Does this sound normal? isn't there a chance of it becoming strangulated?

As far as the radiation end of things: it took an entire year but my anal fissure is about 95% healed now. I can now use the bathroom without excruciating pain. Thank goodness for the compound of nifedipine they gave me when i went for my one year follow up at mayo. If only my local doc would have believed me that i had a fissure and i would not have had to wait until june to get the medicine, and suffered for so many months. My menstrual cycle is definitely over, and as long as i use the replens moisturizer, i am ok, but if not i am a dried up old woman. We discussed hormone therapy and she feels it can be used safely intermittingly like maybe 2 weeks a month take a month off then 2 weeks etc... she said at least a person could go back to having a good sex life for 1/2 a month 6 times a year without significantly increasing the chance for other cancers. I am making an appt with a gynecologist and will discuss that further.

She told me that because of the long term side effects of oxaliplatin that people are getting and the quality of life issues they are now thinking the regimen should be just the 5Fu and leukovorin and then to add in the oxaliplatin after. I wished i had asked more questions about this, because i am not sure if i have it 100% right, but has anyone heard anything about this?

We talked about where to go from here and she thinks because of my age i should continue to have scans every 6 months, and i told her i need to think about that because at some point we also need to consider all the radiation and the risk of a secondary cancer..so it is a catch 22... not sure what to do on that. Since i was diagnosed july of 2008 i have had something like 5 full body ct's, 4 chest xrays, a colon xray, a pet scan and 2 mammograms. For my stage it is recommended once a year for a ct. If i were not on these boards, i would have been fine with that but i am always reading about someone who ends up with mets that only a bone scan, or ultrasound, or MRI picked up, so even with this good news, with the clean scans, i still cannot rest. In the back of my mind i am always thinking..well maybe there is something it didn't pick up..maybe i should ask for a bone scan etc....does anyone else feel this way? It makes me feel so bad to even post good news when so many others are hearing bad news, but yet i want people just starting this journey to have hope as well. 2 people that live close by to me have both been diagnosed with rectal cancer and i am helping them along in making the right decisions- things that they would not otherwise have known about that i have learned from all of you, so maybe i was meant to have this to help other people.42 y/o Diagnosed Stage IIIa (T1 N1 of 26 M0) July 2008
LAR July 24 2008
Supposedly benign polyp with
invasive tubulovillous adenocarcinoma
12 cycles Fulfox
28 days chemoradiation
Finished April 20th 2009
Currently NED

nudgie

First off
never feel bad about posting good news. Your good news could bring a smile to someone's face or even lift their spirts for the day.

In regards to follow-up check-ups, CT Scans, X-Rays, etc., I was DX with Stage II colon cancer in 2006 and finished FLOFOX in 2006. In 2007 I began having CT Scans and bloodwork every 3 months. In 2008 it went to every 4-5 months and then in 2009 it is twice a year and will continue until my Onc Dr says, good to go, see ya later. I think it has to do with my age of DX, 42.

I have continued with the yearly mamagrams and Gyn appts as well as having a lot issues with irregular bleeding, etc, which I am currently working.

I also have had a yearly colonscopy since 2207 even when my GI Doc recommends 3 yrs, but does it for my peace of mind.

Your care whether it be current, follow-up, etc., is up to you. Make sure it falls within the parameters you are comfortable with. I think most doctors and care teams will work with you.

NED is something to CELEBRATE, SCREAM about and not to take lightly. Do something you always wanted to do, plan a trip, whatever it is to mark this occassion.

Now in regards to the additional radation from Image Scanning, I think I have read and spoke with doctors and apparently it is minimal exposure you are getting. You would have to have one every day to receive what would be considered extensive exposure, I think. I am not a doctor, but that is what I remember.

robinvan

We love to hear Good News!!
And it sounds liked very good news PP. NED!! YEAH!! It is the news we all like to share and hear, despite our own various set-backs. We'll have no "survivor guilt" here, thank you!

I had a post-surgery hernia, 2-3" in diameter above my belly button. They left it for 2 years with no problems before it was repaired this summer by open surgery. The larger hernias are less apt to strangulate. They wanted me to be "stable" as far as the cancer was concerned.

I've totally lost track of how many various scans I've had. I'm still on a 6-month repeat cycle for CT scans. Standard practice is to start with a shorter interval and lengthen it as the risk of recurrence decreases. I personally wouldn't want to see the time be too long in the first year or two.

I understand your feelings of concern about recurrences. It is natural. I think the trick is to find a balance somewhere between vigilence and paranoia. Let me know how to do that if you figure it out! The scans and other tests are helpful but you have to listen to your body. If something is amiss, keep pushing.

Thanka again for sharing your good news! We truly do celebrate with you.

Be well... Rob; in Vancouver

ps... lost this post once! grrr. Saving it this time!

Julie 44

robinvan said:

We love to hear Good News!!
And it sounds liked very good news PP. NED!! YEAH!! It is the news we all like to share and hear, despite our own various set-backs. We'll have no "survivor guilt" here, thank you!

I had a post-surgery hernia, 2-3" in diameter above my belly button. They left it for 2 years with no problems before it was repaired this summer by open surgery. The larger hernias are less apt to strangulate. They wanted me to be "stable" as far as the cancer was concerned.

I've totally lost track of how many various scans I've had. I'm still on a 6-month repeat cycle for CT scans. Standard practice is to start with a shorter interval and lengthen it as the risk of recurrence decreases. I personally wouldn't want to see the time be too long in the first year or two.

I understand your feelings of concern about recurrences. It is natural. I think the trick is to find a balance somewhere between vigilence and paranoia. Let me know how to do that if you figure it out! The scans and other tests are helpful but you have to listen to your body. If something is amiss, keep pushing.

Thanka again for sharing your good news! We truly do celebrate with you.

Be well... Rob; in Vancouver

ps... lost this post once! grrr. Saving it this time!

Me Too
Hi there,
On Aug.17,I had a hernia and gallbladder removed...I was in terrible pain for awhile and my doc thought I had two hernias when it turned out to be a HUGE one...Once I had the hernia and gallbladder removed I feel 1000 times better....
You just made me grin and smile because I know EXACTLY how you feel about getting retested and worrying about if its returned..In fact I have made several posts on this board over the last week about this...I am still trying to get my head in the right place..
Never feel silly about posting good or bad news thats what keeps us all together and sane..We ALL have been there and done that. I have finished chemo this past April and I look forward to getting online to chat with everyone and get advice...
ENJOY your good news....JULIE

polarprincess

Julie 44 said:

Me Too
Hi there,
On Aug.17,I had a hernia and gallbladder removed...I was in terrible pain for awhile and my doc thought I had two hernias when it turned out to be a HUGE one...Once I had the hernia and gallbladder removed I feel 1000 times better....
You just made me grin and smile because I know EXACTLY how you feel about getting retested and worrying about if its returned..In fact I have made several posts on this board over the last week about this...I am still trying to get my head in the right place..
Never feel silly about posting good or bad news thats what keeps us all together and sane..We ALL have been there and done that. I have finished chemo this past April and I look forward to getting online to chat with everyone and get advice...
ENJOY your good news....JULIE

thanks
thanks for the good thoughts and well wishes. I appreciate it. It is also good to know that large hernias have less chance to strangulate. I did not know that. I wish you all the best in this journey.