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Dead Tumor

darcher's picture
darcher
Posts: 299
Joined: Jun 2017

  I spoke to the surgeon the other day and saw my x-rays.  The tumor is still there which isn't a surprise considering I'm still constipated.  He said it's most likely non-viable.  The PET scan is due in a couple weeks and I just finished chemo/radiation a couple weeks back.  Has anynone else completed the 28 session regiment only to have it still there? Mine is about the size of a chicken egg judging by what I saw which could be wrong. I'm not a radiologist so I could be way off. The original dimensions given were 30*23*19 from the endoscopic ultrasound but that could be off just as looking at an iceberg on a ship doesn't reveal its true size.  Since it is thick per the doctor having it eradicate from the treatments alone should be near impossible without taking everything else with it or so I would think. 

 Claiming that It's essentially dead has me wondering if I was fed something to keep my hopes up or is it possible it really is toast.  I'm being suspicious now. After all, it's a living thing and has as much if not more fight than surrounding tissue which in a lot of ways is smaller or perhaps more fragil than the tumor. For example, how thick is the colon wall in comparison?  Can it withstand the radiation moreso than a tumor?  Then again the tumor bled like a stuck pig at one point when the constipation first started.  In all honesty, I didn't do any reading on the impact of radiation on tumors.  For that matter, not much on the chemo either. I had the mistaken notion that Xeloda can't be that bad since it's a pill.  I found out that it's just as effective and harsh as the liquid form of 5FU if not more so.  The funny thing is, up until I found out I was taking it like asperin and not noticing anything. Once I knew then I became over sensitised and waiting for some horrible side affect.  They never materialized beyond a few oddites as I call them.  I lost hunger & thirst but got it back now.  Short term memory became terrible.  Those will fix themselves in due time.   

 I've dodged reading up on things shortly after starting treatments to avoid digging too deep since that often prompts a train of paranoid throughts focusing on the negatives. Some might argue a person should learn as much as they can but I found the more I knew the more I had to fret over and the easier I'd fall into the mental cancer pit.  If you have this illness you know that place. For as long as the treatments could go that isn't enough time to acquire even a basic understanding of cancer.  Primary medical school is how long?  That and I'm already aware of the notion that a little knowledge is often a dangerous thing. In this case it could be deadly so I'm leaving it alone. 

  Following doctor's orders became the plan. They've held specific things back a few times and I understand why. Sometimes a person can get overwhelmed and not come back if they're told too much up front.  Those that don't complete their treatments or think they know better make up a large part of the people who don't survive. I was told that by someone in the radiation dpt.  That was a golden nugget since it demonstrates the non-survival stats are heavily skewed by bad behavior.  I've rambled on a bit here. It's a late night and I'm having a poop fest.  3 days of nothing followed by here we go again every 30 minutes.  That's partly my own doing.  I won't push for fear of breaking something that's been weakened.  The docs know and none of them disagreed with me so it's ok.      

      

   

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

My tumor barely shrank after my neo adjuvent treatments.  And they found two additional tumors, one on the liver.  I am still reeling from this news I received just 12 days before my surgery.  

I have decided to mentally deal with this by going ahead with the surgery to remove this main monster tumor.  

The most unsettling thing for me was all the doctors assured me I would respond well.  And I didn't.  They want me to do 5FU after surgery.  Ugh.  However, it seems most survivors endure it.  I will try it and see if I respond.  

I am so sorry we both have to deal with less than stellar news, but we need to remember just how long this process can be.  I agree about them only telling patients what is going to happen currently. It is indeed overwhelming.

Best wishes and lifting many prayers for us all.

Trubrit's picture
Trubrit
Posts: 5462
Joined: Jan 2013

for some people. 

Like most things in life, for some its good, for some its not. We are all so different. If too much knowledge about Caner, puts you in a tail spin, then stay the heck away. You can pick up plenty of good advice here on the forum and at your Oncologist, that will help you through this trial. 

Its a real gut punch to get bad news. Take the time to absorb, and do some whining and feel sorry for yourself. You deserve it..... for a little while. Then you get your mojo back and move on forward with whatever you are facing. 

5FU can really suck, but then, so does Cancer; in fact, that sucks more. 

I was on 5FU during my FOLFOX treatment and then I was hooked up to the stuff for six weeks straight. The only break was to change the needle and clean the port once a week. It was not an easy ride, but, here I am, four years later, typing about it. Guess it worked, eh. Worth the suffering, yes. Worth the continued side effects, yes. 

Onward and upward, forum friend.

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6711
Joined: Feb 2009

Sometimes the rad/chemo works to shrink and sometimes very little.  I'm thinking it all depends on location and type.  Yup don't dig on the internet about your stats or prognosis.  Treatment is harsh but you can get through this.  Sorry for your constipation and tumor - hope that they can take care of that through surgery.

Kim

LindaK.
Posts: 506
Joined: Apr 2013

This caught my eye as my husband's first tumor in his colon removed in December 2012 was called necrotic by the surgeon right after the surgery when he came to talk to us while my husband was still in recovery.  I have not heard that term on this forum.  My husband ended up in the ER due to this "dead" tumor blocking his colon.  5 days later they finally removed it.  Hellish 13 months dealing with inept oncologist and hospital but his surgeon was the only person we really trusted.  I always wondered why he told us the tumor was dead or had dead tissue.  This seemed like good news to us at the time.  Pathology after the surgery staged my husband at II since no lymph nodes tested were involved.  My husband reluctantly did 12 rounds of Folfox (with the oxaliplatin removed after 5 treatments) which I believe kept his cancer controlled.  Within a few months he was having issues like he had in December 2012.  He went to all the doctors, had a 1 year colonoscopy follow up where his GI doctor told he to "lose weight".  No one helped him except one awesome nurse practitioner who checked in with him every day.  She finally ordered a simple xray which showed another tumor or obstruction.  Another 6 days in the hospital where they were actually treating him for constipation and we had to wait until the original surgeon was available to see him.  He did surgery the next day, removing a cancerous tumor from his small intestine and told us after that surgery it was a good thing he removed it that day or my husband would have been in really bad shape.  I still wonder what that meant.

Everyone's treatment is different and everyone seems to respond differently too.  There must have been a reason your doctor wanted to do the chemo/rad before the surgery and maybe you really have responded to it but don't know it yet.  The PET scan will be much more definitive than an x-ray.

Your last paragraph has me hesitating to tell you the rest of our story.  I would take any nugget of hope and run with it.  Is your surgery date scheduled yet?  Best of luck with your PET scan

Linda

darcher's picture
darcher
Posts: 299
Joined: Jun 2017

  I'm actully wodnering about it being dead and it causing a complete blockage.  I've asked myself one question.  Can I pass an egg if it breaks loose?  Because of that I'm back to being careful about my eating and monitoring the intake to exhaust ratio if you know what i mean.  I don't want to end up needing an emergency operation to unplug me. 

  From what I know, doing chemo/radiation prior to surgery is standard practice now, or so I've been told.  The surgery is going to be Nov 3.  The Pet scan I'm still trying to get scheduled.  Seems the left hand doesn't know what the right hand is doing.  Called in today for that and they didn't have the referrel in place yet.  I still have til Oct 11 for that.  I was told that after surgery there will be more chemo but they didn't say anything about radiation.  I'll assume there will be more of that too, why not.  The chemo after surgery will be via a port.  I'm not fond of needles and tubes poking out of me so that's going to give me the yips but if it's necessary I'll go with the flow.

   Earlier I was wondering about recovery time and much to my surprise there was a post up top from 3 years ago about that very thing.  TruBrit, you're post was helpful. God works in mysterious ways.  Well, in my case he'll throw out what I need to know when I need to know it. It always works that way.   I was being overly ambitious thinking that just because the initial affects of radiation would wear off in a couple weeks as said by the radiologist that the chemo would to.  Nope, not based on what was written. I was upset earlier today that I got so tired just doing some garage clean up and getting the tractor ready for snow plowing.  Plus I'm still having brain farts not remembering simple things or having difficulty concentrating or staying focused. Two weeks is apparently too soon.  Makes sense.  Xeloda is an antimetabolite which blocks cell division.  All cells, so at aleast I have an excuse for saying dumb things, forgetting important dates, or neglecting to take out the trash.  :)  You betcha I'm going to use it.   It's going to take a while for everything to get back to normal.   

 LindaK, you got my curiosity, what's the rest of the story?       

Trubrit's picture
Trubrit
Posts: 5462
Joined: Jan 2013

I am glad my post helped. 

The port. I LOVED my port! My port was a HUGE blessing. So much easier than getting your veins accessed every time. Just one tube running, one (rather large) needle, that, with the proper preparation, does not hurt when inserted. Ask for Lidocaine gel or cream, which you apply about half an hour before the needle. Get a good Oncology nurse, and you'll not even know its there.......OK, maybe thats a stretch, but it really is not as bad as your apprehension make you think. 

PET scans are a pain, but not painful. Make sure your bladder is completely empty, that would be my only advice. I'm betting that insurance is holding it up. For some reason, insurances do not like to pay for them. Cancer or no, they think they aren't necessary. My Oncologist just went ahead and scheduled it, then fought the insurace afterwards. It always went through. 

Good luck with everything. 

Tru

 

airborne72's picture
airborne72
Posts: 281
Joined: Sep 2012

Our stories are identical with the exception of the outcome regarding the tumor.  Mine succumbed to the radiation and chemo while yours did not.  Everything else is the same.

I am currently six weeks post chemo/radiation.  I still have what I describe as light fatigue and altered mental acuity (loss of short term memory and the inability to remain focused on detailed tasks), but both are improving. 

My resection surgery is scheduled for 10 October and will be followed with mop-up chemo (provided via a port that will be inserted in my chest during my resection surgery).  That chemo session will last 12 weeks and will include 5Fu.

It appears that I have been blessed with a more communicative oncology team than you.  Both of them (radiation and medical) worked in tandem with each other and kept me informed constantly.  The medical oncologist took the lead in coordinating all treatment to include referrals for scans and return to the surgeon.  During every consult he would explain everything in great detail, sometimes extending the consult to as long as 45 minutes.  That was very beneficial for me and strengthened me through knowledge.

In closing, if you do happen to lay the golden egg, for sure photograph it and if you can bring yourself to do so, retrieve it and take it to your oncologist.  I know this sounds odd and gross, but when mine passed that is what my oncologist asked.

Jim

darcher's picture
darcher
Posts: 299
Joined: Jun 2017

If it pops out not only will I retrieve it but it will get a place on the mantel as the most dangerous game I've brought down.  So far all I've seen is what appears to be small bits and pieces of tissue which I assume are parts of the rectum and colon.  That's during those times when it's not a real number 2 but more gas & water  than anything.  That's been going on a while now. 

 I don't know what it is but I suspect there might be a disconnect between chemo/radiation/surgery departments.  One of the first times I went in for radiation and they asked me if I was getting chemo.  I was stunned they didn't know.  Tomorrow I try again for the PET scan appointment.  We'll see what happens. 

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