Stage 4

Blackcandt

My father was dx about 2 months ago with stage 4 colon cancer. He is 55 years old. The cancer had spread to nearby lymph nodes and to his peritoneum. The doctors told us that it looked like it had just been splattered in the peritoneum. It all started on June 30th when he went in the er with a pain in his side. They did a ct scan and found the mass. He was admitted into the hospital where they did a colonoscopy. Within 24 hours he became very very ill. He was vomitting bile and really going down hill quickly. Basically they ruptured the mass when they did the colonoscopy but they will never admit to that. They said the mass just ruptured. Anyway they were forced to do emergency surgery and when the surgeon came out he told us they got 90% of the cancer. The other 10% was what was left in the peritoneum cavity. They didnt give us much hope int the whole situation. He has had 3 chemo treatments to date. He has two more and they will do a scan. The plan is for him to have the heated chemotherapy in Washington sometime in december. I am new to all of this and feel I dont even know the right questions to ask. He is having pain this week in his upper stomach. I just wonder if this is normal while going through chemo? He said it is a bloating feeling and it just started a few days ago. Of course we are all really scared at this point not knowing when the mass ruptured where the cancer could have spread to. He is extremely tired but I assume that part is normal with the chemo. His last appt the doctor acted shocked he was doing so well with the chemo. Like I said before I am really scared especially for my kids and for him. I dont really know what to expect or what questions we should be asking these doctors when we go to the appointments. Any help you could give me would be sooo greatly appreciated.

Tammy

abrub

I had tumor splattered all over my peritoneum
and my surgeon at Memorial Sloan Kettering went after it, removing all visible tumor. This was my second surgery, as my cancer was a surprise finding during a hysterectomy, as a metastatic tumor had encompassed my ovary.

I also had 5 cycles of intraperitoneal chemo, tho not the heated kind, to kill off what remained. My tumor originated in my appendix, which must have ruptured several years prior to my diagnosis. I, too, am stage 4. I also had systemic chemo (Folfox plus Avastin). Both chemos were after my surgeries. Chemo will knock you down, and causes many side effects.

I was not quite 55 when I was diagnosed 3 1/2 years ago. I am doing great now, and am anticipating a long life.

Gather information. Ask all the questions you can think of, and make up new ones. Ask here, but more importantly, ask his dr.

This cancer is nasty, but I'm walking, talking proof that stage 4 doesn't mean the end.

Alice

CanadaSue

Questions to ask
Hi Tammy,

Welcome to the board that no one wants to belong to....

I would be asking why they are waiting till December to do the heated chemo!

My husband Bill had his first surgery in January, and then more surgery with the heated chemo in March. I think it could benefit your dad if the heated chemo was done earlier.

Push them for answers!


Hugs,

Sue

John23

Tammy -


No-one's said it yet, but a second opinion from a qualified
colorectal surgeon and gastrointestinal specialist that is not
of the same organization (or town) of your present physician,
should be mandatory ("Third" opinions are also good to have).

Most physicians welcome "second opinions", since they learn
of new procedures and techniques that way. It's always in your
best interest to have another qualified opinion!

Best wishes for you all!

John

AnneCan

Tammy
Welcome to this forum; although each of us wishes we didn't need to be here, it is a godsend. You will find lots of help on all kinds of topics. I want to wish you, your dad, + the rest of the family well.

Lovekitties

Hi Tammy
First thing is to take a deep breath. A cancer diagnosis and surgeries scare the heck out of us (patients) and even worse for our loved ones who must stand and wait, wishing there was more they could do.

The biggest help for your dad medically is to be sure that you are on his patient information forms with all docs and hospital as being able to be involved in his care. Sounds like you are going to his appointments with him, which is very good. The patient doesn't always hear everything. When you go, take a notebook with you to write down what the doc says and any questions you have since previous appointment.

As John suggests, a second opinion is always good, especially if you have any concerns about timing of treatments, quality of care or quality of interation with the docs.

There are of course some side effects which seem to be frequent enough that folks here can give you advice. However, you must not be afraid of calling the oncologist giving the chemo to discuss any and all symptoms. It may be that there is a medication which will relieve the symptom or it may cause them to consider a change in dosages, frequency, etc.

I hope that you find the comments from everyone helpful. At the very least I hope you find HOPE here from those who have been in the fight longer and still around to offer encouragement.

Keep posting to let us know how things are going and ask anything at all and we will try to help you.

Marie who loves kitties

mom_2_3

Tammy
I am a Stage IV. I was diagnosed in November 2008 and I had a liver resection in February 2009. My last chemo treatment was November 2009 and I have had clean scans since and am considered in remission. I have scans every 3 months. Immediately following my diagnosis I spent lots of time searching the internet and forums for Stage IV long-term survivors and have found many that have lived a long time treating their illness as chronic disease and others than have been NED (remission) for many years and some that have been in remission greater than 5 or 10 years (which many would consider "cured").

While I personally have not had HIPEC there are a few on this board (specifically jenhopesprays) that have had it. Additionally, I visit another board (colonclub.com) where a number of memmbers there have had both HIPEC and IPEC. I have put a link here to one specific user over there (scottg) that has had 2 HIPEC procedures with great results. I would suggest that you get a user logon over there as well and then check out his posts. I don't believe you can link to his user profile without your own username. Here is his link (http://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=268&sid=d5385697aca841428f8aaf8cd85025e7) or you can go to "Member Profiles" at colonclub and search for "scottg" as a username.

I hope this helps you to prepare your dad for surgery (which is a significant surgery) as well as give him hope that he can do this and get great results.

All the best to your family,
Amy

Blackcandt

mom_2_3 said:

Tammy
I am a Stage IV. I was diagnosed in November 2008 and I had a liver resection in February 2009. My last chemo treatment was November 2009 and I have had clean scans since and am considered in remission. I have scans every 3 months. Immediately following my diagnosis I spent lots of time searching the internet and forums for Stage IV long-term survivors and have found many that have lived a long time treating their illness as chronic disease and others than have been NED (remission) for many years and some that have been in remission greater than 5 or 10 years (which many would consider "cured").

While I personally have not had HIPEC there are a few on this board (specifically jenhopesprays) that have had it. Additionally, I visit another board (colonclub.com) where a number of memmbers there have had both HIPEC and IPEC. I have put a link here to one specific user over there (scottg) that has had 2 HIPEC procedures with great results. I would suggest that you get a user logon over there as well and then check out his posts. I don't believe you can link to his user profile without your own username. Here is his link (http://coloncancersupport.colonclub.com/memberlist.php?mode=viewprofile&u=268&sid=d5385697aca841428f8aaf8cd85025e7) or you can go to "Member Profiles" at colonclub and search for "scottg" as a username.

I hope this helps you to prepare your dad for surgery (which is a significant surgery) as well as give him hope that he can do this and get great results.

All the best to your family,
Amy

Thanks so much everyone for
Thanks so much everyone for all the comments! It is a very scary time for us. He cannot go to washington dc until December because they said he has to wait 3-4 months after his surgery before he has the other. That is what they told me when I called Washington Dc and spoke to Dr Sugarbakers office. Ive read really good things about Wake forest but his oncologist suggested Dr Sugarbaker and said he is the best. My parents seem to have alot of faith in the current oncologist. I dont have as much just because I just wish he was getting more upbeat talks from them instead of "we will do the best we can" I just think it sounds like a death sentence. I am so glad I found this board! I forgot to mention they told us the day in the emergency room it was stage 4 and in his liver. Once they did the surgery they told us there were no signs of it being in the liver at all. So I assume its still a stage 4?? Thanks again everyone, I feel like I can sleep a little better tonight.
Tammy

Nana b

Blackcandt said:

Thanks so much everyone for
Thanks so much everyone for all the comments! It is a very scary time for us. He cannot go to washington dc until December because they said he has to wait 3-4 months after his surgery before he has the other. That is what they told me when I called Washington Dc and spoke to Dr Sugarbakers office. Ive read really good things about Wake forest but his oncologist suggested Dr Sugarbaker and said he is the best. My parents seem to have alot of faith in the current oncologist. I dont have as much just because I just wish he was getting more upbeat talks from them instead of "we will do the best we can" I just think it sounds like a death sentence. I am so glad I found this board! I forgot to mention they told us the day in the emergency room it was stage 4 and in his liver. Once they did the surgery they told us there were no signs of it being in the liver at all. So I assume its still a stage 4?? Thanks again everyone, I feel like I can sleep a little better tonight.
Tammy

We are here for you
Welcome, and yes, once a stage !V, always a stage !V. And then hopefully, it's to cured! Some say over 5 years in remission and you can considered your self cured. That is what we all hope for!

Hope you Dad does well, and is on the road to recovery. Bloating is not unusual after a major surgery, it can go on for awhile. But do ask about it!

Hang in there and be sure to ask all the questions you can, jot them down and take them with to the ONC office.

This will be scary for all, my grand kids always ask to see my owie, and I do show them, because they can be rough with me as before, these scars hurt for awhile. Plus you can't move too fast anymore and you ache, and oh my, the list goes on....but they understand that I have had surgeries, cancer does not mean anything to then right now, and they don't need to know. My oldest grandchild was always around to help me move around and she was always by my side in my healings, but she is very close to me and nothing will keep her from my side, that is just my Tay Tay..... When she say my scar, she got so sad and said she felt so sorry for me, I just hugged her and told her that I was fine and to give me a hug!

Hugs!!