1 (edited by RichardL Fri, 29 Jun 2012 09:04:09)

Topic: Post-Whipple follow-up scans and tests?

My wife is currently 9 months post-Whipple for CC, and 2 months post-adjuvant chemotherapy (Gemcitabine /Gemzar). Her scans and blood tests are clear, though she has a fairly severe incisional hernia repair in the next week or so.

Does a six-monthly CT scan and 3 monthly C19-9 etc. sound reasonable, or are any of you on a very different follow-up regime?

Many thanks.

Re: Post-Whipple follow-up scans and tests?

That sounds like a reasonable followup schedule.  Will she see the doctor at the 3 month point for checkup and blood work results as well?

I started with that schedule (3months seeing doc, blood work every 3 and scans every 6) but then there was something they were concerned about and they upped me to 3 mo. scans.  now i am back on 6 months scans 3 month blood work. 

To be honest, I think the doctor would see me as often as I wanted.  He leaves it to me to see what I am comfortable with.

Good luck.
-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.

Re: Post-Whipple follow-up scans and tests?

Thanks, Randi.

Yes, I believe she'll be seeing her consultant and/or specialist nurse every 3 months, and it will be blood work every 3 months.

There was a blip before her final all-clear post-chemo, with hotspots showing on a PET scan, but they were false positives and anyway unrelated to CC and due to untreated dental problems which couldn't be dealt with during chemo.  They called them 'incidentalomas' (worth Googling if anyone's not familiar with the term - we weren't).

Re: Post-Whipple follow-up scans and tests?

My wife is one year post-Whipple and she is on a 3 months schedule for everything: CT scan, blood work, oncologist. She is a high risk to relapse due to microscopically positive margins and two positive lymph nodes, so we are sticking to the 3 month schedule for now.

She has a huge incisional hernia too. It doesn't cause any pain, so we are taking wait and see approach. Hernia repair surgery is not without risks.

Re: Post-Whipple follow-up scans and tests?

eli...I am sorry to hear of the hernia, but have learned that with these type of surgeries it happens more often than not.  Most people prolong hernia repair until things  become too bothersome. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Post-Whipple follow-up scans and tests?

Hi Richard, My husband had clean margins after a Whipple and they set up PETS every 6 months for 5 years. He visited the ONC every 3 months with LABS as well.
Eli just want to add that Teddy had a small ventrical  hernia and they would NOT do surgery. They said between the aborted Whipple and the real deal they would not do more surgery on him.

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.

7 (edited by RichardL Sun, 01 Jul 2012 06:47:27)

Re: Post-Whipple follow-up scans and tests?

Many thanks, everyone, for the feedback.

We really need to get clear in our own minds the difference in use of CT, PET and MRI; when they're used, and exactly what for.

We're seeing her surgeon tomorrow, so hope to get that explained, and also to find out the options for the hernia repair. One thing appears certain, and that's hernias don't heal themselves.

After my wife's Whipple they didn't advise any restrictions on movement or exercise - just return to a normal life as soon as you can was the attitude. She remembers the exact occasion, lifting a box, that almost certainly initiated the hernia and its development.

8 (edited by PCL1029 Sun, 01 Jul 2012 08:22:56)

Re: Post-Whipple follow-up scans and tests?

Hi,

There are information on Our web site That are related to the Ct, MRI and PET and the link is below.

http://www.cholangiocarcinoma.org/punbb … hp?id=6543

http://www.cholangiocarcinoma.org/punbb … pid=61437#

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: Post-Whipple follow-up scans and tests?

Many thanks - just what we needed!

Re: Post-Whipple follow-up scans and tests?

Hi Richard,

After my wife's Whipple, the surgeons told her not to lift anything heavier than 10 lbs. She diligently followed the instructions but she developed hernia anyway. My understanding is, hernias are very common after Whipple.

My wife's hernia is huge. She looks like she is a few months pregnant. She wears abdominal binder to support it. It's very uncomfortable to say the least. The good news is, it doesn't cause any pain.

Hernia repair surgery is a relatively simple surgery. Nothing compared to Whipple. The risks come afterwards. To repair hernia, they put a synthetic surgical mesh behind the abdominal muscle wall. This surgical mesh does NOT dissolve. It stays there permanently and may cause a number of potential problems.

In some patients, it causes chronic pain. I don't know what percentage of patients. I told my wife that, no matter how small the risk is, she should not take it. Uncomfortable hernia is tolerable; chronic pain and painkillers are not acceptable.

Another issue is, it's not uncommon for hernias to come back. If and when they come back, they can be a big mess. Much bigger mess than the original hernia. The body forms scar tissue around the surgical mesh. If hernia comes back, the surgeon can't simply take out the old mesh and put a new one. They have to deal with scars.

One more concern... surgical mesh is a foreign object in the body. Immune system reacts to it. I remember a post from a forum member who had enlarged lymph nodes after her hernia repair. The catch is, the enlarged lymph nodes can also be a sign of the cancer coming back. Her doctors couldn't figure out what it was by looking at the scans. She had to do a biopsy of the nodes to figure it out. I told my wife she doesn't need this extra stress.

Given all these risks, we decided to wait and see. If the hernia stays pain-free, there is no rush to do anything.

Please note, I'm not a doctor. This is not an expert opinion. I might be blowing these issues out of proportion. You have to discuss the risks with your wife's doctors.

Good luck making the right decision!

Re: Post-Whipple follow-up scans and tests?

Excellent post, Eli. Teddy was also told not to lift anything. BTW most  of his golf ball size hernias popped up about 3 years after the Whipple along the scar line. He never had pain or discomfort with them.

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.

12 (edited by RichardL Tue, 04 Sep 2012 03:52:14)

Re: Post-Whipple follow-up scans and tests?

My wife had an incisional hernia repair (with mesh) at the beginning of July, and has made a good recovery.

We're trying to educate ourselves on the follow-up bloodwork results, with  particular reference to CEA and C19-9. We've found quite a bit of information, but if anyone knows of particularly instructive websites, we'd appreciate the links.

We're not sure what a 'normal' range actually implies (0-37 on C19-9?), and the plus/minus errors on these readings.  We understand that individual readings don't give as much information as a trend.

Also it would be really useful to know whether C19-9, in particular, could be affected (in the short term) by a hernia repair and/or fairly heavy Creon dosage.

Any comments on the following treatment history would be really appreciated:

Whipple   4sep11
Post-adjuvant Gemzar chemo ran 6 months from Nov11 - April12
Incisional hernia repair 4jul12

CEA from 26oct11 though to last week has been steady at 3 or 4.

CA19-9 reduced from 13 (26oct11) down to 6 (+/- 2) (15may12), but last week blipped up to 25 (previous reading was 5 on 15may12). She had repeat bloodwork yesterday, but the results are not back yet.

We have total confidence in her consultant (Marsden UK), but we're keen to learn from anyone else in the same situation.

Many thanks.

13 (edited by PCL1029 Tue, 04 Sep 2012 10:24:29)

Re: Post-Whipple follow-up scans and tests?

Hi,
I sincerely don't know all the answers.
I took Gemzar for 18 month.( bio marker test indicated Gemzar will work in my case); but the cancer returned after 24 month.resection again to remove the 3x2 cm new tumor in a difficult location..RFA to remove the one that was< 3cm in size.chemoembrolization to provide finish touch of the one by RFA.
I never had CA19-9> 37, but I had intrahepatic CCA which is different than extra hepatic CCA that Whipple procedure is one of the procedure that is used .
I never had CEA> 3.5. In fact it was  within normal when I had removed the 8x5.6 cm tumor at the first surgery.
Inflammation, infection, acid reflux,GI related issue like colon and rectal problems and stress will all affect the value of both biomarker's result.
Unless it develop a trend of upward or downward movement in several months. I don't think it is all that important. However a sudden big jump( ie: from tens to hundreds or thousands in a month) or dive is of value to look deeper at them.
I had no experiences on other issues you mentioned.
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: Post-Whipple follow-up scans and tests?

Many thanks for the information.

May I ask what RFA stands for?

It's interesting to hear (from another Forum member) that some oncologists are not interested in following C19-9 at all, and consider it unreliable.

I'm also interested in the units we are using. When we talk about C19-9 readings in the 0-37 range, are we using the same units as those who report in 100's or 1,000's?

15 (edited by PCL1029 Wed, 05 Sep 2012 08:11:25)

Re: Post-Whipple follow-up scans and tests?

Hi,
Please see attachment for RFA.

http://www.veithsymposium.org/pdf/aim/3068.pdf

CA19-9 is  mor reliable  on cancer especially in prognostic use of  colon and rectal cancer. Pancreatic cancer too. However  CA19-9 may be of less valuable and of less predictable value in INTRA rather than extra hepatic CCA. But the TREND as far as I know (ie: 14;14.5;17;21 ;24 etc on an monthly basis is not as good as (ie: 21;19,16.5,14,13 etc), That is for intra hepatic CCA. Extra CCA may be very different especially if stents are involved. Normally CA19-9> 129 is indicative of CCA involvement in cholangiocarcinoma.
The units used are the same for CA19-9. For pancreatic ca, it can go as high as >100000 U / ml. For extra hepatic CCA, the highest I have seen on this message was 97,000.
See also attachment about CA19-9 .
http://www.veithsymposium.org/pdf/aim/3068.pdf

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: Post-Whipple follow-up scans and tests?

The information is much appreciated, but I still can't see what RFA is - there's no mention on the link you posted.  I'm sure I'm missing the obvious but perhaps you could steer us in the right direction?

17 (edited by PCL1029 Wed, 05 Sep 2012 19:40:37)

Re: Post-Whipple follow-up scans and tests?

Hi,
may be this will help.

http://www.cholangiocarcinoma.org/punbb … hp?id=2080

http://www.docguide.com/radiofrequency- … oma?tsid=5

http://www.macmillan.org.uk/Cancerinfor … ation.aspx

there are also some discussion under the experience forum  of Radiation treatments options on earlier posts.

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: Post-Whipple follow-up scans and tests?

Many thanks - those links are useful.