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Diagnosis Change

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  Another constant is change, even in cancer.  According to one doctor I've got Rectal Cancer and the other is holding to Colon.  At first I thought I might have two tumors but that was cleared up as it being long enough to bridge the intersection of the sigmoid colon and rectum.  

  The next surprise came with the biopsy.  According to that, I don't have cancer!  It's very close but no cigar. The doctors disagree and I'm in their camp.  That thing in me isn't benign, that's for damn sure. it is growing and is evidenced by the simple fact I can now feel it interfering with digestion. Who ever pulled the sample either missed it or grabbed onto a part that wasn't fully developed.  So, now they want to do a PET scan etc. to be absolutely without a doubt sure.   I can feel it inside me as strange as that may sound.  Since it's where it is I get the I have to go sensation that isn't quite right because of it.  I believe the colon is trying to pass into the rectum and since there is resistance due to it partially obstructing the canal it's creating a similar feeling.  The rectum isn't full but the colon doesn't know that.  A false alarm so to speak.

 I went in for the consultations for radiation and chemo.  They are going to do both together for 28 days, 5 days a week. The drug of choice is Xeloda. Seems that it doesn't have harsh side affects and is fairly popular.   After that will be surgery and then maybe more chemo.  We'll see after this first round.  It was kinda strange when I went to the Chemo dpt.  They had a large waiting area but no one was there.  It was 3:30 so I figured I was the last customer of the day.  They gave me a black folder with the first page being a description of Xeloda. While the nurse was doing something on a computer I noticed it said it is an antimetabolite. I must have said it out load because the nurse asked me how I knew about that.  I told her I read about the various forms of chemo used and how they operated.  I guess a lot of people don't do much in the way of research into what their given. They should.  In my opinion I think other avenues of attacking cancer cells should be looked into since interfering with DNA has consequences to normal cells and may explain the recurrance possibility. From what the doctor said it can be as high as 50% in 5 years that it comes back.  That's unacceptable in my book.

 After leaving there and going to the lab I carried that black folder and wondered if maybe the colors were given for a reason.  Perhaps to identify to staff what the person was there for if there is any interaction.  Could be.  The one I got from radiation was green.   While waiting for my number to be called I watched the other people walking around and noticed some people had folders although none were black.  Most of them were either white or blue. After a short while  I got the feeling I know I can beat this.  I'm the one out of all these people who can tackle this which is why I got the black folder.  That's arrogant as hell but for a little while I felt like that, almost proud in an odd sort of way that I get to take this challenge knowing that I will win.  There was a book I read a few years back called With Winning In Mind. it's a book that teaches you the proper mindset to win at what ever sport you're playing.  This isn't a sport but the mindset is the same. The author was a gold medalist in shooting.  It works.  I used it's techniques to win many archery tournaments and there is a mental standard you need.  You lose doubt, fear, and worry. You go in knowing you're going to win.  That's what I felt sitting there.  Yeah, I got this.  It doesn't stay forever but when it's there you feel invincible.

 The prognosis has gone from good to not so good to not having cancer at all, maybe, or maybe not depending on the lab, doctors, or the pictures.  This will work itself out.  It always does.  That much I'm confident in.   

 

 

   

            

  

 

 

 

Trubrit's picture
Trubrit
Posts: 5004
Joined: Jan 2013

and will go along way, and for many years. 

And, here's hoping that it isn't Cancer.  

I am off out of the door right now, but would love to type more. I will be back - just like that rubber ball - I just wanted you to know we are all here for you as you move forward, regardless of wether they finally determine if it is a benign or Cancerous tumour.

Tru

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

I know what you mean.  Although I am from the Uterine Board, I have a soft tissue mass (5.2 cm  2.2 cm) which has attached itself to my rectum and my bladder wall, among other things.  This small tissue mass is also PET positive albeit low (3.0).  I was able to have a CT guided biopsy which came back negative.   So I sit and wait as it continues to grow ever so slowly.   I now have deloped another small tissue mass (1.1 x 1.0 cm) in the same area.   

I understand what you mean when you say you can feel it.   I feel it is also interferring with my digestion.  In fact in the last 3 months from no pain to now having pain daily because of digestion issues.   The scarring from the radiation is also playing a part of it.   You described exactly how I feel.

With regard to mass, I had a positive biopsy for another soft tissue mass.  When they removed it, the darm mass was negative but they found a lymph node with microscopic cells.

Ugh - the confusion. 

My best to you.

 

EissetB
Posts: 135
Joined: Apr 2017

I hope it's not malignant. When my colonoscopy was done, the GI doctor told me I had cancer and that he sent out biopsy to the lab. When I got the result from the lab, it showed benign but I doubt it due to my bloody stool and severe pain in my stomach. So another colonoscopy was done after a week. And sure enough I had colon cancer and it was stage III. Having a second opinion or test could save a life. Doctors and medications are much better now compared that way back then. God bless us all

Eisset

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I hate the rollercoaster. It's soul sucking and exhausting. I hope for thebest for you Darcher!

Jan

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  Thanks everyone for the encouraging words.   I'm pretty much resigned to it being cancerous.  Looking at my own pictures as compared to ones I found on-line, it quacks like a duck and walks like one. It's cancer.    I don't have any false hopes of it being something else.  Even if that were the case it still needs to come out.  That little bugger hurts sometimes.  The one doctor said they could stop and wait to see what it does but that's a high risk gamble.  I'm sticking with a full frontal assult.  Well.. actually an attack from the rear, lol.  

  If anyone is interested and curious as to how a biopsy can come back with a negative check this out.  

https://www.sciencedaily.com/releases/2016/01/160126162212.htm

  Based on these findings cancer cells reach out and grab other cells including healthy ones and pull them into the tumor.   It partially explains how they grow as fast as they do and why a biopsy may not be that accurate.

Canadian Sandy's picture
Canadian Sandy
Posts: 545
Joined: Jul 2016

Very interesting link...thanks darcher.

beaumontdave's picture
beaumontdave
Posts: 1015
Joined: Aug 2013

Your attitude is great Darcher, I tend to be more fatalistic, even when things are good. I recall biopsy issues like you describe with the initial tumor and the first  reccurrance, they overrode the negative results based on appearance and growth, and probably blood tests like the CEA. If it looks, walks, and quacks like a duck.............................Dave

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

   I'm trying to stay upbeat and I think digging into this disease and learning as much as I can really helps.  Keep your firends close and enemies even closer really applies.  A few days back I was under the misguided notion that proton therapy would be better than standard radiation.  I don't think so anymore.  SInce cancer likes soft tissue and can have multiple little colonies in and around the same area with some undetectable due to their small size, the shotgun approach of normal radiation is better versus the sniper style of proton therapy.  I'm going to ask the doctor next week about that and maybe even remind them if I say something dumb to not be afraid to correct me.  Just explain why so I get it.  This biospy thing is a good example.  It would taken about a 1 in 5 luck of the draw to have it come back as cancer. 

 Cheers to all and have a good Sunday.  

Dave

 

plsletitrain
Posts: 253
Joined: Jul 2017

Until this day I thought biopsies are the most conclusive determinant of whether one has cancer.  Why don't they just remove the tumor first before determining whether its really cancerous or not? What if it turns out negative and you were already subjected to chemo? So how's this, you'll undergo chemo and all those treatment before making sure that its really cancerous?

I'm ignorant on the subject but I just dont understand how your biopsy yielded negative yet you'll be undergoing the harsh chemo.  Why not remove the tumor first then have it biopsied? 

And yes, your attitude will play a very big role to your treatment and survival.  I've always believed in the power of the mind.  It controls the body.

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

    From what I read about how a tumor developes it doesn't start out as all cancer cells.  Cancer cells start out by grabbing other nearby cells and bringing them in to develop the tumor. 

  It's a recruitment using some kind of bridging mechanism to latch onto other cells to grow itself.  I wouldn't think it's all uniformly distributed either.  Some areas could have higher concentrations than others.  Since cancer cells divide at a quicker pace at some point the tumor would end up mostly cancerous and eventually give a positive result from anywhere a biopsy is taken.  That was kind of hope building in that this tumor probably isn't as developed as it can get.

The article didn't specify that the ratios are always the same from cancer to cancer and probably aren't but in that one it was one in five cells are cancer.  It also didn't say how old the tumor was.  I suspect a tumor's cancer cell ratio probably increases over time since they divide quicker versus normal cells including the ones recruited.  I don't know much if anything about how a biopsy is done but it's not always conclusive and that might be one of the reasons why.     

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