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surgeon messed up!

crazylady
Posts: 544
Joined: Jun 2004

Hi Everyone,
Apparently my onc had requested that the tissue removed during surgery be sent to pathology to be tested against different chemo drugs to see what worked and what the cancer was resistant to. I know there's a name for this, but can't remember what. The surgeon forgot to send out the tissue and since it can only be done on fresh tissue chemo is a guessing game as usual.
My onc is really angry and I am upset and angry, though surprisingly I am taking it all in stride. It's entirely out of my control and I'm accepting that! Since I'm a total control freak this is a big step for me.
I will be starting chemo in 3 weeks, xeloda, oxylaplatin(sp) and avastin. I was on this combination before but with the 5fu pump. The onc keeps telling me that it worked, but I question it because the cancer recurred after 3 months. I got a second opinion before my first lung surgery and that onc agreed with mine. Does anyone have any experience with being told that something has worked when the cancer is back after 3 months?

hopefulone
Posts: 1048
Joined: Jan 2007

It's good that your not letting the surgeon's screw up overly stress you out. I don't know that I could do the same. My hubby is on same combo they are putting you on. So far, he's been doing ok with it. Mets have shown some shrinkage and fortunately side effects have been few . I hope the treatment plan goes smooth for you . Keep us posted. God Bless
Diane

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

Hi Crazy!

I am stage III colon and half way through my chemo treatments. I was on Oxylaplatin & xeloda but had to be taken off of those because of the side effects. I am now on Camptosar and 5-FU pump.

Anyway, during my Onc Doctor's visit, I asked him "How will we know if the Chemo worked?".
the Doctor looked at me and said "You won't know if it works..You'll know if it doesn't work if the cancer comes back".

Now..I maybe a different case because there were no test (other than the colonoscopy) that told me I had cancer (plus they took all of the tumor out during surgery). Not the blood, ct or pet.
I was not upset by his answer and glad for it.

I know all of this is frustrating to you and rightly so but glad you are able to "slow down" and take things as they come (for being a control freak). That makes life a lot more stress free (as I have learned).

I sure will be thinking of you and wishing you the best.

Claudia

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Jamie,
Sorry to hear about the screw up. It would certainly have been good information to have!!
I hear 3 weeks before Chemo... does Alaska still fit in the plans?
I'm on Xeloda, Avastin, and Irinotecan. Side effects for me are mostly gut related, along with low platelets and WBC. I'm taking neupogen to help boost the WBC. I seem to have been spared the nasty hand and foot reactions. My clinic recommends you take good vitamin B-6 complex to help prevent the hand/foot reaction. Katie has a line on some good lotions if you need them. There are some threads on Xeloda a few weeks/months back.
All the very best... Rob

crazylady
Posts: 544
Joined: Jun 2004

Hi Rob,
Yes, Alaska is still in the plans. We leave a week from Saturday! I've spent the last few days shopping for things we need for the cruise. I am taking my 2 youngest daughters with me. They are actually going to miss the first week of school so I'm also trying to get them organized with school supplies etc. so they are ready to go when we get back.
Jamie

JoyceCanada's picture
JoyceCanada
Posts: 134
Joined: Mar 2006

I also had an "oops" -- from my surgeon. Biopsy taken during colonoscopy came back as benign. Surgeon decided to do a LAR because small tumour was bleeding and "lets do this and fix this before it becomes a problem".

Fast forward --- post surgery I went for my 6 week check-up with surgeon.

He said "have a great time in Florida (we are snowbirds)... hey wait a minute he sat down and opened my file.......sorry dear you have a stage III rectal cancer with 2 nodes involved.

He says that the pathology report was lost. I however think that he was so convinced that there was no cancer he just didn't bother to look at the report.

Now this man is a "leading" colonrectal surgeon and has a worldwide reputation.....boy did he have a red face. I on the other hand had 6 months of Folfox + 28 days of continuous radiation with 5FU.

NED october 2006

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

So glad to hear it Jamie. It will be a great cruise through some of the most beautiful scenery in the world.
Be well... Rob

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Jamie, I did the same cocktail with the 5fu and during that time, tumors shrunk and no new growth was detected. Yes my cancer did come back in about 5 months but it was not any more that before i started so, that puts me back almost 10 months with no growth. Yes in my eyes it worked. I am now on Avastin and Xeloda and so far its working. also, so far the cancer has come back when I stop taking the xeloda.
hang in there my friend.
Limey

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Jamie,
Are you NED at this point? Is chemo necessary at this stage in the game? I ask because I did not have chemo following my lung resection. I would ask the surgeon and/or oncologist what the benefit is since you do not have any cancer present at this time.
At any rate, I don't think your cancer "came back". It was probably there lurking all along. At least that was the case for me. They believe that my cancer had spread to my lungs already at the time I was diagnosed. They said it had just not developed into nodules large enough to be seen.
I felt the same way that the 2x I was on chemo it did not work, because it did not get rid of those mets. However, they were not recurrences per se.
Have fun on your cruise and don't let this stuff get you down. Congrats on taking it all in stride.
-Susan

crazylady
Posts: 544
Joined: Jun 2004

Hi Susan,
You may be right, the mets may have been there all along, though this is the first time in 3.4 years that it showed up in my left lung.
I am NED as far as I know. I'm better off doing chemo because as soon as I am off chemo cancer shows up on the next scan, 3 months later. Chemo seems to keep the cancer away or at least small enough to not show up on scans. I don't want to give the cancer a chance to spread and I can't have surgery every few months. I guess chemo does work to some extent. I just want it to be gone forever!
Jamie

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Yeah, I guess each case is slightly different. Even though it seems like our situations are very similar. When my lung mets showed up they put me on this "watch and wait" thing for about 8 months...even though they suspected colon cancer, they waited until my PET scan lit up to remove them. I think they were kinda waiting to see if anything else would show up. Fortunately it didn't, so when they finally got big enough to light up on the scan I had my surgery. I did not realize that you had stuff showing up periodically every 3 months or so....Well, my doc told me that after the lung resection 20-30% of people who are NED at that point never have anymore problems. I told him I was going to be in that group! And so will you!
Best wishes,
Susan

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