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-

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.

Hi,

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God bless.

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!

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.

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?

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?