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2nd op, bummed, need encouragement


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Old 10-25-2006, 08:44 AM   #1
Jeni61
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2nd op, bummed, need encouragement

Hi, Gang.

Went to the 2nd op on surgery yesterday, nothing earthshatteringly different from what my surgeon recommends, but the 2nd op doc told me that he thinks I have 1 - 2 nodes possibly involved. He said he could be wrong, they could just be reactive, but you can imagine how I feel.

Now as you know, I have been told no nodes, altho w/ a T3 tumor, was also told that surgery was very likely to find nodes. Nevertheless, it threw me and I feel just terrible.

The 2nd op doc saw the CT scan, not the PET or the endorectal ultrasound.
He said the spots were very very small, in the pelvic area, and size may be why they did not pick them up ( altho they pcked up a 2mm spot on the liver and sent me for more testing, ruling out cancer).

As for my PET, the 2nd op doc only got the report and said that in it, it is noted that there is a "satellite nodule" very tiny that may be just a chunk of tumor or it may be a node. My reg dr never told me this.

The ultrasound found no nodes. Both my doc and the 2nd op doc said the ultrasound is by far the best at nodes, and even so, is only 70% accurate.

So I called my doc when I got home. He said they really didn't feel any nodes were on the CT scan, and the PETscan was ambivalent as to whether it was a piece of tumor or not, and they tend to think the ultrasound is the most accurate of all and that said no nodes.

He also said all along my treatment was planned with the notion that nodes would be found. Guys, I KNOW this, but it still shook me up.

He also said that he is more concerned with how I am responding to treatment versus the presence of a few nodes, as the response to treatment was probably more meaningful. He noted that my tumor has shrunk considerably, based on DRE - this is from 3 drs, my surgeon last week, and also two drs yesterday.

He said he expected to be victorius and all along nodes were likely to be found.

Its true, but still - fwoom, sweesh, I'm thrown !

All you stage 3ers, give me a shout out and lift me up some. I know so many of you thriving and doing so well.

By the way, he didn't recommend removing any additional organs, and also didn't think any addtl scans were needed as no one is trying to save a rectum here.

He also said that he thinks pathology depts understage cancer often -- gulp -- as it is hard to remove nodes from the fat they come in and examine them.

Thanks all --

Jeni the Freaked Out

 
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Old 10-25-2006, 09:53 AM   #2
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Re: 2nd op, bummed, need encouragement

Hi Jeni,

I know you are freaked - I would be too, but the good news is that you have no mets. Focus on that...your post-op chemo will wipe out anything that may be deciding to cause trouble later on.

It is good that you responded well to the pre op treatment. All new studies I've read say that is a great thing.

My surgeon also said that some pathologists aren't good at digging for the nodes. He said when he worked in Cleveland they would find upwards to forty nodes, at Lahey you are lucky to get 10-20...he said it is about passion for hunting for them. I think they found 17 in my hunk-o-colon/rectum.

Either way, I don't think this effects your staging - you are still Stage 3...which is very curable w/the treatments and surgery.

I KNOW very well how freaked out you are...been there myself. It is so hard to sit and wait and worry. You can beat this!

Try to enjoy this time off before you start the next phase. Be sure to go and do the things you enjoy...loose yourself in a good book, get some holiday shopping done, plan an early Thanksgiving dinner w/friends and family - (you will likely be on a restricted diet and/or still in the hospital at Thanksgiving-- I was last year. I missed Thanksgiving and did a lot of online shopping last year.)

Here is a big hug!

Take care,
Cats

 
Old 10-25-2006, 10:14 AM   #3
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Re: 2nd op, bummed, need encouragement

Dear Jeni,

Sorry for your news. I am a stage 3 rectal cancer with 6 out of 13 nodes affected. After 2 yrs (since surgery), so far everything is fine.

Please understand, while the tests give alot of information, the surgery is what will determine your true stage. Prior to my surgery, they determined me stage 3 with 4 nodes involved. Surgery would confirm stage 3 with 6 nodes involved. If these nodes are a question mark I would assume they are small (which to me sounds like GOOD NEWS). Also it sounds like they only expect to find a few, again sounds like GOOD NEWS.

I believe you are on the right track, you like me, made the decision to have the rectum removed. You will be followed up with chemo. You are going to beat this.

I suspect it is probably good that you learned this information now, verse after surgery. It will give you time to prepare, emotionally. Remember you are going to beat this.

Good luck,

Lee

 
Old 10-25-2006, 11:57 PM   #4
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Re: 2nd op, bummed, need encouragement

Jeni:
HANG IN THERE. I KNOW how frustrating all this can be. I'm glad you are seeking more than one opinion... it's important to feel confident in and trust your surgeon. As for the nodes... you are right.. U/S is the best for this, and this is only 70% effective. They thought I was clear... they removed 10 nodes (all nodes DON'T need to be removed... just 5cm circumferential from the tumor) for me... new standard is 14. But out of the 10 they removed for me, 6 were positive for active cancer. This DEFINITELY increases your chances that you may have micromets. Remember though, it takes a while for you to heal after surgery due to the radiation, and if you wait a little bit, it doesn't REALLY matter. Colorectal cancers tend to be slow growing.

Adjuvant chemo is VERY important after the resection. Some studies show it's more important than neoadjuvant chemo and radiation. I don't know about this.. I do know the radiation, although it has caused me all sorts of trouble now, DID kill off my golf ball size tumor to just "scar tissue" by the time of resection.

Keep your chin up. You are GOING TO HAVE THESE PERIODS. Sometimes you feel like you are going crazy, other times you worry and worry about the what ifs. Just know that MORE and MORE people are surviving this. IT DOES matter how many nodes are positive... this will substage you to 3A, 3B, or if you have 4 nodes or more 3C which means you have a greater risk of spread or micromets. But I was a stage 3C and I am STILL HERE!!! Lean on us... don't worry about what you look like to ANYONE. Be who you are. I KNOW you are going to get through this JUST FINE.

Fondly,
CancerDad

PS Cats... Lahey and Cleveland Clinic are 2 VERY well known places that provide advanced care for colorectal cancer. I know you commented about the number of nodes removed at each institution... I'm assuming this was beyond a 5cm radius. Maintaining nodes that are away from the tumor is actually a good thing as it is part of your immune system. Luckily, we don't have the pain that breast cancer patients have, but it equates to that in a way... some surgeons still automatically do a full nodal dissection. This causes SEVERE swelling down a woman's arm which is VERY painful. Newer guidelines call for locating the first node or "sentinel" node in the chain and testing that. If it's positive, then they proceed with a full dissection. Otherwise they spare the woman from a very painful complication.

I'm curious-- I recently switched to Lahey for most of my care... do you mind sharing if you got your surgery there? You really had a rough go, and I'm curious if it was at one of the places that is supposed to be "excellent!!"
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Old 10-26-2006, 09:42 AM   #5
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Re: 2nd op, bummed, need encouragement

CD-

I have been at Lahey since 1999, when I was diagnosed w/Chron's. Even with all my complications I wouldn't go anywhere else. I have had ALL of my surgeries, scopes, chemo, radiation, etc. there. My colorectal surgeon is Dr. Peter Marcello and he is THE BEST, in my opinion. I don't think that my complications were due to any poor care I received from him. I have also know Dr. Ricin (?sp) and Dr. Shoetz (?sp) and Dr. Roberts. Dr. Marcello has an AMAZING amount of energy and passion for his work. He is also the king of laproscopy - does a LOT of teaching.

I think what he was saying regarding the nodes was that when he gives his "pile-o-parts" to the pathologists that the ones in Cleveland dug around and found more nodes then the ones at Lahey do...He takes out what he needs to in order to get the clear magins he is hoping for.

Hope you are feeling well.

Jeni - I hope your spirits are up some today!

Take care,
Cats

 
Old 10-26-2006, 10:35 AM   #6
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Re: 2nd op, bummed, need encouragement

Cats:
What a SMALL WORLD... I have been with Dr. Roberts-- as a consult right before my colostomy over 1 year ago, and ever since my colostomy. I also changed my oncologist and urologist to Lahey. We probably walk by one another in the lobby and don't even realize it!!! You know that new show on TV called six degrees or something... where you literally walk by people before you know them at least 6 times before you meet... or something like that... this is what I feel. What a STRANGE, and SMALL world. Who would have guessed it?

God Bless. I hope you are doing well.

Jeni-- I hope YOU are doing well, you WILL get through this.

Hugs,
CancerDad
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Old 10-26-2006, 10:41 AM   #7
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Re: 2nd op, bummed, need encouragement

I am a little better today - because the truth is, with a t3 tumor, I knew all along that they would likely find nodes.

CD, what if the neoadjuvant treatment killed the cancer in the nodes ? Can they still tell it was there ?

I think I asked this once before -- you said you had active cancer in the nodes, and that is different from if nodes had cancer, but now its killed off, right ?

I had thought they could tell in a node that even if the radiation killed the cancer in a node, they could still tell it had been there.

Thanks so much, everybody, for responding.

Jeni

 
Old 10-26-2006, 10:44 AM   #8
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Re: 2nd op, bummed, need encouragement

Gang - I guess the places where we remove nodes don't typically cause any swelling problems like it can for breast cancer survivors. I asked about this specifically.

Jeni

 
Old 10-26-2006, 01:21 PM   #9
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Re: 2nd op, bummed, need encouragement

Jeni-

As I understand it, if your pre surgical treatment did its job, you would not know if there was cancer there before. This is why staging is so difficult for rectal cancer. For me, I had zero positive nodes at surgery, but because I had the pre surgical treatment, and my age (32), my docs treated me like I did have positive nodes...hence the 7 months of chemo... However, my tumor did not shrink much at all, nor did it turn into scar tissue, etc as a result of the chemoradiation. The pathology report sized it about the same as the ultrasound, and it was still a poorly differentiated adenocarcinoma...little bugger.


CD- It IS a small world after all...

 
Old 10-26-2006, 01:35 PM   #10
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Re: 2nd op, bummed, need encouragement

Cats, so you did the pre-surgery chemo/rad and if you had nodes that were cancerous, you couldn't tell afterwards, as they were zapped ?

Does the radiation have enough spill that it would zap the nearby nodes ? It must, or your other tissues would not be so fried by it.

My doc is encouraged that my tumor has shrunk nicely -- and I am happy that 3 separate doctors felt it and said that, as now I feel like I will have to have everything run by someone other than my treatment team.

It encourages me, now great you are doing. I don't know if I am as strong as you, you always sound as strong as an ox, but I will try.

lovies -

jeni

 
Old 10-26-2006, 03:17 PM   #11
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Re: 2nd op, bummed, need encouragement

Quote:
Originally Posted by Jeni61
Cats, so you did the pre-surgery chemo/rad and if you had nodes that were cancerous, you couldn't tell afterwards, as they were zapped ?

YES...exactly.

Does the radiation have enough spill that it would zap the nearby nodes ? It must, or your other tissues would not be so fried by it.

I would imagine so...I know that is the case for my brother who is undergoing radiation to his neck... and by the way my va-jay-jay feels, I think EVERYTHING in range was fried to a crisp...

My doc is encouraged that my tumor has shrunk nicely -- and I am happy that 3 separate doctors felt it and said that, as now I feel like I will have to have everything run by someone other than my treatment team.

That IS great news!!! I was discouraged after my surgery that the chemoradiation did not do more. I asked my oncologist if that means that it didn't work - and he gave me some explanation that my chemobrain won't recall at the moment, but basically said, "not necessarily."

It encourages me, now great you are doing. I don't know if I am as strong as you, you always sound as strong as an ox, but I will try.

You are stronger then you are giving yourself credit for! I was VERY impressed with how well you tolerated the chemoradiation. WAYYY better then I did, for sure. That is hopefully a good sign for your post op treatment. (Do you know what that will be, by the way?) As you know, when you have small children counting on you, you do what you have to do.

I am doing SO well right now that I can hardly believe it! I have lots more energy then I have had in a long time. I even have some decent bowel control, which is amazing to me. My only complaint these days is the intercourse problems - I wish I had an ounce of my old self down south... As you can imagine, if that is my biggest complaint, then I am really not complaining...I am SO greatful to have good health...you will too very soon.


lovies -

jeni

Right back at ya,
Cats

 
Old 10-26-2006, 04:30 PM   #12
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Re: 2nd op, bummed, need encouragement

Quote:
Originally Posted by Jeni61
I am a little better today - because the truth is, with a t3 tumor, I knew all along that they would likely find nodes.

CD, what if the neoadjuvant treatment killed the cancer in the nodes ? Can they still tell it was there ?

I think I asked this once before -- you said you had active cancer in the nodes, and that is different from if nodes had cancer, but now its killed off, right ?

I had thought they could tell in a node that even if the radiation killed the cancer in a node, they could still tell it had been there.

Thanks so much, everybody, for responding.

Jeni
Hi Jeni:
I'm glad to hear you are feeling a little better. Keep your chin up. Remember, you are in control of your body. Believe that you have the power to help cure what is wrong with you body. This may sound corny... but, do you meditate? Through getting acupuncture treatments, I was also taught about qui gong... basically a method of deep relaxation where you learn to breathe out negative or bad energy, and breathe in the good energy that surrounds us. I know many of you are sayining, "is this guy nuts, or what?!" But it truly works for me. In fact, I taught my boys how to do it and helps on them too. It's a way of taking back power that you feel is lost and using it to change what's happening in your body. Google it... might be worth a try!

As far as the positive nodes go... you can have active, or live cancer cells, or dead cancer cells, or the thing that can be bad with getting neoadjuvant chemoradiation, NO cancer cells present even though they were there before. Your lymph system flushes out all the time, and usually your nodes trap the "bad" particles or matter in your body. Once trapped and killed, it can clog up your node/s and stay there or get flushed out. If a cell is alive still and your body lets it go without attack, it will just get caught up in the next node. So, sometimes it is impossible to tell if a cancer cell was there.

Usually though if there is a remnant dead cancer cell in a node, a pathologist can spot it.

I hope this answered your question. If not, I'm always around.

Fondly,
CancerDad
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Old 10-26-2006, 06:12 PM   #13
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Re: 2nd op, bummed, need encouragement

Cancer Dad

I have a question I've been meaning to ask my doctor (I always forget when I see her) maybe you can answer it.

I had 13 nodes removed during surgery, after 2 yrs, are there nodes there now? Do they come back once they are removed? Do my remaining nodes move around and fill in the gap? I've wondered about this, and hope you can answer.

Thank you

Lee

 
Old 10-26-2006, 06:58 PM   #14
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Re: 2nd op, bummed, need encouragement

Lee:
No, nodes that are removed do not grow back, or move from other areas to "fill in" where others were removed.

I hope that helps answer your question! Be Well!

Fondly,
CancerDad
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Old 10-26-2006, 10:50 PM   #15
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Re: 2nd op, bummed, need encouragement

Cancer Dad,

Thank you for your response, yes it answered my question.

Sorry for the hi jack.

Lee

 
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