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Dad has stage 4

Oscar Jr.
Posts: 10
Joined: Mar 2013

Hi, I am new to this whole blog deal but I am in search of help or advice of some sort.  My father, 53 years old, was diagnosed with Colon cancer last summer in July.  He had the surgery done to remove it a week before my birthday.  The surgeon reported that he had gotten rid of all the cancer and assured me everything would be fine in only a matter of months.  My father has a colostomy bag of which he is not too fond of but he is learning that it is something he has to deal with.  He just recently finished up his last chemotherapy about a month ago and everything checked out!  He went back to get a scan and they found an object in his stomach.  He then had to come back to get a biopsy.  The results came back to show that what they found turned out to be cancer.  And to make things worse it was stage four.  To my understanding and from my readings the odds are against him.  Something that scares me everytime I think about it.  

I had to call the ambulance for him this past Thursday because he was having severe pain in his stomach.  When we went in for his chemo the prior Monday the Nurse Practioner assured us it was just cramping from the chemo.  But, when we went in my father was in major pain and turned out he had an obstructure in his stomach (something he was faced with at the very beginning of the Colon cancer).  They believe that the cancer cells may have imbeded into his stomach and the chemo is burning through it.  Or they believe the tumor is growing rapidly.  Many possiblities.  They went to do the irrigation and found that the stoma was very small.  The nozzle could barely fit in there.  So nothing solid is coming out, just liquid substances, which could mean the solid is backing up which could lead to obstructure.  My theory at least, don't know how accurate it could be but they seem to have not ruled it out.  

Tomorrow they will do a surgery to widen the stoma and hopefully relieve so much pain for my father. 

I am 19 years old.  My family is all in a different country.  So it is just me and my dad.  I do not know if I sound like a child for saying this or whatever but I really need my dad and do not want to lose him.  So if anyone has advice for me to help my dad beat the odds it would be great.  I love my dad very, very much and will listen to what ever advice I can get!

Thank you for taking the time out to read this!

buckeye2
Posts: 427
Joined: Jul 2011

Oscar,

   First of all let me say I am sorry you are having to deal with this at such a young age.  At some point my 16 year old asked me if her dad was going to die.  My answer to her was, "Yes, and so are you but neither one tomorrow".  The reason I tell you this is there is a good chance that there are lots and lots of tomorrows for you and your dad and hopefully enough tomorrows to put you on more stable ground to deal with it.  This disease has a way to look horrible one day and then the next brings a big come back.  You are going to have to do the hardest thing in the world now which is concentrating on the living rather than the dieing.  It will be the best thing you can do for your dad and I am sure his biggest worry is you not his health.

 

Lisa

John23
Posts: 1832
Joined: Jan 2007

 

Re:

“… The surgeon reported that he had gotten rid of all the cancer and assured me everything would be fine…

.... results came back to show that what they found turned out to be cancer. And to make things worse it was stage four. To my understanding and from my readings the odds are against him. Something that scares me every time I think about it.”

 

If it was colon cancer that they found in the stomach, then he could be “considered” as a stage four, but he actually is whatever the original stage was, with metastasis.

 

If the cancer is stomach cancer, then he has a “second cancer”, and the stage of that would be indicated.

 

A biopsy of the stomach tumor will indicate what type of cancer it really is!

 

After reading your comments, it appears that there is some confusion regarding what is being said by the physicians, or by the way you are hearing it. It’s very common to experience this, and the reason most of us suggest that you always have someone with you to take notes and to listen to what is being said.

 

For a loved one, or for the patient, what the physician is saying is often lost during the moments of high anxiety during that conversation, so it’s always best to have a friend with you during those meetings! Someone not as close will be thinking clearer (hopefully) and remember things you or your father might have missed.

 

You should also locate another colorectal surgeon that is not of the same group or organization as the present one(s) and get another opinion. Cancer is a life-threatening experience, and no 1 opinion should be relied on as the only opinion that is correct.

 

Treating cancer with chemicals instead of surgical means, is a choice that a qualified surgeon can help you and dad decide. The more qualified opinions you get, the wider the choices for recovery might be! So if you can, seek other surgeons for their opinion regarding your father’s case.

 

A stoma should protrude from the body by at least ¾ inch. That allows for what is called a “spout” that enables the waste to fall directly into the pouch. The inside diameter of the stoma is whatever it is; I never heard of it being made “too small”. The intestine manages to move all sorts of stuff through it by expanding as needed, so the inside diameter changes. The intestine is cut and brought through the skin to form a stoma, by stitching it at it’s base, turning it inside-out and stitching it again at it’s base. When you look at the stoma, you are actually looking at the inside of the intestine, not the outside. They do that because the inside of the intestine is impervious to stomach acid, etc, while the outside isn’t. Exposing the outside of the intestine to the same acidic products would be destructive and possibly painful; turning it inside-out eliminates that problem.

 

Not every colostomate can irrigate. It’s a handy procedure, but not required by any medical standards, so it makes me wonder why (and how) they will recreate a stoma. Every time any abdominal surgery takes place, there can be adhesions and hernias that follow. Adding complications where no complications are desired, seems a little strange to me………..

 

I would very strongly suggest you try to get your dad to make appointments with other colorectal surgeons, if possible. Good physicians welcome other physician’s opinions. It the easy way for them to learn of new procedures that they may not have had time to explore! Any physician that appears to be annoyed or insulted from hearing that their patient is asking for a second opinion, is probably not the physician an individual should be relying on.

 

There’s a long, bumpy road to walk, for both you and your dad. Keep your eyes open, and try not to stumble too hard. He may do a lot better, just knowing you’re there to support him!

 

My best wishes for you both!

 

John

Oscar Jr.
Posts: 10
Joined: Mar 2013

Hi and thanks for your response.  But they said it was stage four because it traveled from his colon to his stomach.  And they said technically it would be considered colon cancer because that is where it originated at.  The stoma was very small though.  The nurse tried to stick her pinky in there to find exactly where to do the irrigation at but she could not fit in there at all.  They opperate at about 3:30 maybe sooner. 

John23
Posts: 1832
Joined: Jan 2007

 

Re: Cancer stage

 

“Once the staging classification is determined, it stays the same even if treatment works or the cancer spreads.”

From: http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/colon-cancer/diagnosis/index.html

 

­­­­­­An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed—information about the current extent of the cancer is added to it.

From: http://www.cancer.org/treatment/understandingyourdiagnosis/staging

 

 

My 2006 radiolgist’s report claims I was a stage 3c colon cancer, pending the surgeon’s findings. I had one oncologist telling me I was a 3c, and another saying I was a 4. The surgeon’s report indicated I was a stage 4, but I continued my belief that I was a 3c anyway. In actuality, I was a stage four since 2006. I was reminded of that with both my 2011 and 2012 surgeries. Neither subsequent surgery was for cancer, but for the damage caused by the initial surgery in 2006. The 2011 surgeon caused even more problems that he fixed, and the last 2012 surgery resolved all past problems.

 

Not being classified as a stage four can offer benefits, since being classified as a stage four cancer victim can be detrimental to one’s financial matters, insurance matters, etc.

 

As far as re-doing the stoma? Please let us know what the final outcome is? The intestine flexes, expands and contracts as needed; being “too narrow of a diameter” is puzzling at best. The intestine may not have been provided a wide enough opening through the skin, but the skin gives as much as the intestine. If the intestine was pulled through a muscle area, it’s possible that it’s being “choked”….. Or if the intestine was brought through the skin at an unusually tough right angle, it may be a problem, but it’s usually managable without needing surgery.

 

There are surgeons of all varieties, some really good, and some you wish you never knew; you really should get other opinions from other surgeons.

 

Best wishes,

 

John

 

Oscar Jr.
Posts: 10
Joined: Mar 2013

Hi there, 

The surgery took about 30-45 minutes.  He said it was a real quick fix.  Mainly scar tissue, he said everything went well and he should be able to eat tonight and more than likely be discharged tomorrow.  

He also said that the cancer is spreading badly and that he's afraid that it is getting to his liver due to the pigment change he appears to have. (I didn't notice a pigment change, just lathery skin; if that makes sense.) But he did repeat that the cancer is all over his stomach and seems to be spreading.  

I do not understand too well why you say 3c and 4.  I thought that stage 4 indicated that the cancer is spreading at an uncontrollable rate...? If I am mistaken please let me know.  And I will be getting the opionons of many other surgeons as well if you think that is a great option and needs to be done! 

Thank you.

John23
Posts: 1832
Joined: Jan 2007

 

Re:

I do not understand too well why you say 3c and 4.  I thought that stage 4 indicated that the cancer is spreading at an uncontrollable rate...? If I am mistaken please let me know.

 

That information is explained in the links I provided in my last post.

 

By the way, the initial staging stays the same, even if the cancer spreads. You mentioned that your father was staged initially (not as a 4?), and months later it was found that the cancer had spread. His initial stage would remain whatever it was, but the fact that the cancer had spread (metastases) does not change the stage.

 

A physician can change the stage with the paperwork required, but why? It only puts the cancer patient into a more difficult financial position. Stage four cancer usually puts the patient on the “short list”, and manages to prevent obtaining loans, or a job, or housing…. It’s the stigma attached to having an absolute terminal disease that causes a great reduction for services and borrowing power. So if you’re a stage anything except a four, you’ll fare better than a four.

 

The odd part of it all? A stage one or two can have metastasis throughout the body within a year of diagnosis, and subsequently die of unresolved cancer within two years of original diagnosis, while a stage four might remain under care for more than ten years.

 

Cancer remains to be a terminal disease. No-one knows what our time limit is; most of us do not have a bar code on our forehead (or butt) that would indicate our expiration date. So what we all manage to do (eventually), is be prepared for the worst, and be grateful for the best. We’re all going to die sometime; some of us very unexpectedly, and some of us with full knowledge that the odds are against us….. we expect it. Not willingly perhaps, but we expect it.

 

Oscar….. Get your father another opinion from a qualified colorectal surgeon (or three), he needs to know what his options might be, and what the differences in prognosis are (if any).

 

 I have been a stage four colon cancer victim since 2006; don’t lose hope for your father.

 

My best to your both,

 

John

 

Oscar Jr.
Posts: 10
Joined: Mar 2013

Thank you so much!

So I spoke with the nurse just now and she said it would be great to get a second opinion, and usually when its metastatic a form of stage 4.  And she told me that a second opinion would be great.  But she also said that the doctor we have now is one of the best doctors for cancer.  So...I guess I'm wondering what kind of questions should I be asking.

Oscar Jr.
Posts: 10
Joined: Mar 2013

Your story is still on my mind and I cant thank you enough.  You are a true inspiration and you'll be in my prayers! Keep fighting! I pray that my father will have the same amount of luck as you!  Thank you again!

Trubrit's picture
Trubrit
Posts: 1411
Joined: Jan 2013

What a wonderful son you are to be taking care of your father, and you concern for him and for yourself.

You have come to a great place to get advice, love and support. All of which you and your dad will need as you continue on this journey. 

One piece of advice I would give you is to get two good note books. One for questions and answers for your dad's oncologist. During the week write down any questions that you have about your father's condition. Write down all the symptoms your father has, from the smallest to the biggest. I write down everything from head to toe, and talk to my onc about it, no matter how small it may seem ie. My scalp is sensitive. Well, I pretty much know its the chemo, but I want my onc to know about it. 

The second note book is for you and your dad. Every day write how your dad is doing, feeling, experiencing. Again, nothing is too small. I personally take my vitals (Blood Pressure, temperature, heart rate and weight) every morning. I wtire down every bowel movement, size, constitancy, yeap, everything that my body does or feels, goes in my note book

This is all adive for you to think about. 

I will definitely remember both you and your dad in my thoughts and prayers. You will find love, advice and support here. I'm so glad you have found us, thuogh sad for your father. 

Chin up!

Oscar Jr.
Posts: 10
Joined: Mar 2013

Thank you all for your responses and advice.  It is very much appreciated and I will do so.  Sounds like a great plan.  Thank you very much!

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