Guilt, Happiness, and Confusion

airborne72

Everyone:

I spoke with my surgeon yesterday morning (he returned my phone call) and asked him about the surgical pathological report.  In a condescending tone he said that he thought that he had shared that with me in the hospital.  I bit my tongue and did not respond in kind.  This is why I had an aversion to this guy.  Substandard communication skills.   As soon as he successfully completes my ostomy reversal I intend to give him a "high five with one to boot."

I specifically asked him about margins and lymph nodes.  He said everything was clear.  Four nodes removed and all were clear.  We terminated the conversation.  Then surprisingly early this morning my path report was posted on my online medical records portal.  Sure enough there it is big as day.  I am surgically considered T0N0MX!!

Thank you Xeloda and gamma rays.  You absolutely ruined my summer but you have made my future much brighter.  Even grumpy bear surgeon was impressed.

This is what I mean by that statement.  My surgeon did not truly encourage neoadjuvant chemo/radiation.  His consult shocked and puzzled me and I even sought another surgeon but stayed with him so I could be admitted to the hospital where my daughter works.  Now this guy is singing praises for my decision.  When he and I part ways I intend to rate him online with a high technical score but low communications score.  Bedside manner and effective communications are two different things.  I was not wanting him to hold my hand; instead I wanted the facts.

I now feel guilty because my situation is MUCH LESS significant than most on this forum.  Yes, I ate the pills, sustained the burn, and submitted to resection surgery to make sure this disease is eradicated from my body.  Now/ I am merely enduring an ileostomy.  It is inconvenient yet temporary.  As I sit here typing I am clinically and surgically free of detectable cancer and for that I am truly thankful.

This brings about confusion.  Do I need to follow-thru with mop-up chemo?  My oncologist says yes, but that is similar to asking a dog if it is hungry.  "Gee whiz Mr. Wilson" I don't really want to do so unless it is absolutely prudent. The surgical path report did mention the presence of several very small poloyps, so I guess those could have eventually become cancerous.  Who knows.

So today my mental state can be described with three words: happiness, guilt and confusion.

Jim

Mikenh

Someone on another forum

Someone on another forum asked the same question: should I do mop-up. Every reply was "yes" along with many reasons why. The original poster replied - of course I should.

Your case is similar to mine - but you're ahead of me. I feel bad for the Stage 4s and jealous of the Stage 2s. But I hope that they all survive and prosper with minimum problems. You've been through an ordeal and still have a ways to go.

I'm a bit surprised about your surgeon. Every single doctor that I consulted, radiologist (first and second opinion), oncologist (first and second opinion) and surgeon said I'd need chemo and radiation beforehand, surgery and mop-up chemo. The second opinions were at Dana Farber Cancer Institute and it would be tough to argue with them. After watching you, Grace and Beth (and others on another forum) get through this successfully, I'd have to say the course of treatment works.

 

ron50

Hi Jim

     I was stage 3c when diagnosed. It was very aggressive and had raced thru 6 lymph nodes. I had a very experienced surgeon. He said he had rarely encounterred a cancer so aggressive. He was positive it would get me and suggested I only had around three years left. Regarding chemo he said I had little chance even with chemo and no chance without it. I thought he was wrong , not because I knew anything about cancer, I just had a gut feeling I would survive. I had every treatment that my doctors suggested and every test as per the protocol. I am still having scopes on a regular basis and in conjunction with my last scope in april I asked for a cea test .   It is atill at <.5. The scope was after a 3 year break and produced 4 polyps , the largest 11 mmm. None were cancerous but most showed mild displaysia ( pre cancerous changes). This coming Jan 22nd I will reach the end of year 20 of survival , still cancer free.  I t is a wonderful thought to think that you can leave the stress of cancer behind. I can't and don't . Surviving survival is not easy and in my opinnion it requires a high level of commitment from the survivor. Good luck on your journeyand please stay vigilant. Ron.

Trubrit

'Much less'

I now feel guilty because my situation is MUCH LESS significant than most on this forum.

There is NOTHING 'much less significant' about your situation than any one here on the forum. Your diagnosis and treatment make you equal to any of us, regardless of staging or amount of horrors we did or did not endure. 

Said my bit. 

Sadly, only you can determin if you will go forward with the mop up chemo. There are folks here who have and haven't. There are folks passed who did or didn't. 

Stick with the happiness part of the three. And I hope you are recovering well. 

Tru

danker

Iliostomy reversal

After my reversal and connection of plumbing, my oncologist wanted additional chemo.  The surgeon said it wasn't necessary.   So i went without.

I have been NED (no evedence of disease) for last 7 years.  Lucky me!!!

lizard44

Hi, Jim

Can't help with  your decision  about mop-up chemo; that's a decision that is so individual with each  person and his or her medical team. Just want to say  how glad I am that  you had such good results and seem well on the road to recovery. Did you get your pain  problems resolved?

Grace/lizard44

Mikenh

lizard44 said:

Hi, Jim

Can't help with  your decision  about mop-up chemo; that's a decision that is so individual with each  person and his or her medical team. Just want to say  how glad I am that  you had such good results and seem well on the road to recovery. Did you get your pain  problems resolved?

Grace/lizard44

I'm happy to see both of you

I'm happy to see both of you posting. And Beth too.

Ruthmomto4

Don't apologize!

enjoy the moment and the news! I am very happy for you! The mop up chemo is such personal choice, the first time my husband did not do it, honestly I don't think we would be doing chemo now and looking at a second liver resection if he had. However you just don't know. Whatever you do is your choice and any who cares about you I am sure will support you! 

Annabelle41415

Wonderful

That is wonderful news but I'm surprised that he said that the margins were clear while coming out of surgery.  I've never known a doctor to declare that until the path came back.  It just seems to me that you would have to be clear about all the nodes and tissues surrounding the tumor.  Yes the doctors do a lot of surgeries but was always the impression you had to get an all clear and so glad you did.  My doctor also told me after path that my margins were clear but they suggested mop up chemo "just in case" because my radiologist said that he had a patient that declined it and it came back with fury and the end was not good.  They left it up to me - to do or not to do.  It was a hard decision but in the end, the mop up chemo was what my next step was.  It was hard for me to say was it possible that more could be done and then decide against it and then if it came back with a fury wish my judgment should have the decision that I'd originally made.  So yup, did the mop up and I'm still here.  It's all your decision.  But make sure you make that decision and think hard.  Some go on without mop up and are fine.  But to put it bluntly - you have to make the ultimate decision and it has to be one you can live with.  Congratulations on the great path report.  And don't worry about your doctor - tell him to lighten up .  Enjoy the NED status.  Great to hear.

Kim

BRHMichigan

So happy for you, Jim!!

Honestly, I was just thinking it had been awhile since hearing some good news here.  You work so hard on your health.  You deserved this 'break.'  Hope this is one long honeymoon.

I am thinking of abandoning chemo at this point.  I just don't feel confident that it will eliminate my mets.  Exploring a new Oncologist and a natural treatment M.D.  Making my decision early November.  I don't want to spend the rest of my life suffering like I have for the past 6 months.

That being said, you KNOW the chemo worked for you pre'surgery.  My cancer spread during treatment.  

darcher

Don't be a "I shoulda..." a year from now.

Excellent news.  As to chemo afterwards, I'd do it.  My doctors didn't really give me the option. They just told me after surgery in a couple weeks we're starting you on 4 months worth of something.   And that's with simple stage 3 and no lymph nodes touched.  Plus, after the initial chemo/radiation the rad Dr. said in a couple months the tumor would be completely gone on it's own, even without the surgery. I think it's already dead as it is now.  Then he said, do the surgery anyhow.  I'm not going to argue because I know enough to know I don't know.   A few months of walking around with red or blue fluid pumping in me is well worth the number of years it will probably buy.      

beaumontdave

Congrats on your good report.

Congrats on your good report. Having said that, enjoy the moment and the hopefulness it brings. Your still with us on this ride and every bit of good news, should elevate us all, just as bad news knocks us back a bit. My surgeon is a bit like yours, lousy presentation, he told me it was very gettable, waited three months, then said it was in three places in my liver, what did I want to do? WHAT? Told me I could have chemo or radiation, at which point I said I wanted it the hell out of me, and he says "yeah, it always seems to come back with the other treatments". Talk about gut-punched, I would have tossed him, but I didn't want to lengthen the surgery date, and asking around I learned he was a brilliant surgeon, head of department, and highly thought of. Just not much of an empathetic human. So I accepted his flaws, and was seeing his assistant doctor afterwards, anyway. She was everthing he wasn't, kind, thoughtful, sweet. A good pairing, it seemed, so I left it alone, but I sure won't forget it.................................................................................Dave

 

Mikenh

beaumontdave said:

Congrats on your good report.

Congrats on your good report. Having said that, enjoy the moment and the hopefulness it brings. Your still with us on this ride and every bit of good news, should elevate us all, just as bad news knocks us back a bit. My surgeon is a bit like yours, lousy presentation, he told me it was very gettable, waited three months, then said it was in three places in my liver, what did I want to do? WHAT? Told me I could have chemo or radiation, at which point I said I wanted it the hell out of me, and he says "yeah, it always seems to come back with the other treatments". Talk about gut-punched, I would have tossed him, but I didn't want to lengthen the surgery date, and asking around I learned he was a brilliant surgeon, head of department, and highly thought of. Just not much of an empathetic human. So I accepted his flaws, and was seeing his assistant doctor afterwards, anyway. She was everthing he wasn't, kind, thoughtful, sweet. A good pairing, it seemed, so I left it alone, but I sure won't forget it.................................................................................Dave

 

I really wish that I had

I really wish that I had pushed harder to get things done more quickly but this stuff has a very steep learning curve and it was hard to absorb it all and I didn't anticipate how hard it would be to get an appointment at Dana Farber - because they do so much volume. The hospitals in my area - walk right in and we'll take care of you. You have to work pretty hard with Dana Farber to just get someone to talk to you to schedule an appointment. So there are all kinds of things that can slow you down. I also don't think that I realized how fast this stuff can grow. Doctors tend to think that CRC grows slowly but we know that's not always the case and everyone is different. I'm quite eager to have my tumor out and, yes, they didn't find any anywhere else but they didn't scan the other places either. I wonder if they will do that in the pre-op as it appears that they commonly do them at that time.