Just found out
Hello I just found out yesterday that I have a mass on my colon after having a colonoscopy. I have so many questions now. I go for a ultrasound on the 20th. I am 38 years old with a wife and 4 yo daughter. I have found this board and seen the encouragement you have given to others and I would like to be a part of that. I am a Christian and believe God can do anything. Any advice or information you can share would be encouraging.
I am afraid I ignored signs for awhile. I had blood in bowel before and it went away. My doctor explained it could be a variety of things as long as it is gone. I though this would also go away.
Now of course after yesterday I feel pain in my back, groin, and legs. Fearful that things have spread.
I appreciate any thoughts, advice, or prayers anyone wants to share.
Comments
-
Hello!
I am 39 years old and diagnosed with stage IIIc colon cancer a month and a half ago. I have twin 3 yo daughters. I may not be the best person to encourage you yet because I am still in shock and denial myself, but I can comiserate with you! I can say that this forum is a great place to get encouragment from survivors, get advice from all these very knowledgable people, and to feel less alone. It's so nice to hear stories of survival even if the survival requires surgery, chemo, radiation, what have you. I want to have enough time on this earth to raise my daughters. I am typically not a great advocate for myself, but that is what I am trying to learn here. It seems that the amazing survival stories include seeking out an onocologist/surgeon that won't say no to whatever treatment it is that gives you a chance at more time.
Was your colon mass biopsied during your colonoscopy? Why the ultrasound? - just seems like a radiologic modality that I have not heard many people's doctors utilizing to evaluate for colon cancer.
0 -
HelloNEDbound said:Hello!
I am 39 years old and diagnosed with stage IIIc colon cancer a month and a half ago. I have twin 3 yo daughters. I may not be the best person to encourage you yet because I am still in shock and denial myself, but I can comiserate with you! I can say that this forum is a great place to get encouragment from survivors, get advice from all these very knowledgable people, and to feel less alone. It's so nice to hear stories of survival even if the survival requires surgery, chemo, radiation, what have you. I want to have enough time on this earth to raise my daughters. I am typically not a great advocate for myself, but that is what I am trying to learn here. It seems that the amazing survival stories include seeking out an onocologist/surgeon that won't say no to whatever treatment it is that gives you a chance at more time.
Was your colon mass biopsied during your colonoscopy? Why the ultrasound? - just seems like a radiologic modality that I have not heard many people's doctors utilizing to evaluate for colon cancer.
hello nedbound,
Your post last month is one of the reasons I joined this forum. I just got confirmation from the dr that the mass is cancer from the biopsy. He said the ultrasound is to determine staging. He thinks it's good to have this information before seeing the oncologist and surgeon. I am trying to locate opinions of dr here in Indianapolis to see who to use. My ge has referred me to drs in the IU health group. My Dad wants me to try cancer treatment centers of America. Anyone have any thoughts?
0 -
Opinionskaryns_dad said:Hello
hello nedbound,
Your post last month is one of the reasons I joined this forum. I just got confirmation from the dr that the mass is cancer from the biopsy. He said the ultrasound is to determine staging. He thinks it's good to have this information before seeing the oncologist and surgeon. I am trying to locate opinions of dr here in Indianapolis to see who to use. My ge has referred me to drs in the IU health group. My Dad wants me to try cancer treatment centers of America. Anyone have any thoughts?
Go to a major cancer center. I'd avoid CTCA - I know many people who have had negative encounters there. They wouldn't even talk to me unless I assured them that I was transferring all my care to them, and not consulting other specialists.
The prognosis for colon cancer has improved over the years. I'm 8 years out with a Stage 4 (Appendix cancer) diagnosis.
It's no fun, but you can get through this.
Alice
0 -
Welcomekaryns_dad said:Hello
hello nedbound,
Your post last month is one of the reasons I joined this forum. I just got confirmation from the dr that the mass is cancer from the biopsy. He said the ultrasound is to determine staging. He thinks it's good to have this information before seeing the oncologist and surgeon. I am trying to locate opinions of dr here in Indianapolis to see who to use. My ge has referred me to drs in the IU health group. My Dad wants me to try cancer treatment centers of America. Anyone have any thoughts?
Sorry you have to be here, but it is a good place to be. I got my diagnosis at the beginning of the year, had the surgery, finished chemo and now waiting for my first post chemo scan. (If you click on my name beliw the avatar you can see more of the long winded story
)One of the things for me was staging was not official until the surgery. Despite the scans, it turned out to be more involved than the scans. The doctor who performed the colonoscopy said half the time the scans may be false positive (which I was not buying) and that perhaps late Stage II or Early Stage III. The surgeon at MSK would not say that, and he was leaning to Stage III (was Stage IIIC). A buddy of mine gave me a bit of advice (and I believe others echoed it here), try not to get too bogged down in the Stage numbers or Stats.
As to Cancer Centers of America, there are mixed reviews and there have been some discussions here (in the colorectal cancer section) and otherwise. Of course there are things that can be found for every place out there, positive and negative, so some grain of salt. (I know someone diagnosed a month before me with colon cancer, and of course each case is different, and they went to CCA. They passed away 5 months ago. Sounds like they were okay, then rapidly went downhill. Which very well can happen, but that sort of stuck in my mind a bit.)
http://www.cancercompass.com/message-board/message/all,38947,0.htm
For what is is worth, I would go to one of places that I knew of beforehand (meaning before my diagnosis) as being the leaders in the cancer field. Though the Dr. who did the colonscopy on me suggested a surgeon "since it really does not make a difference," and I met with the surgeon he recommended, I also had Memorial Sloan Kettering in my mind. Glad I did. Not sure which are the major players in your area. But definately worthwhile to do a bit of research and get a couple of opinions on treatment.
Again, sorry you are here. But hang in there, come here to post to hang out, ask questions and yes, even joke.
0 -
Welcome karyns_dadkaryns_dad said:Hello
hello nedbound,
Your post last month is one of the reasons I joined this forum. I just got confirmation from the dr that the mass is cancer from the biopsy. He said the ultrasound is to determine staging. He thinks it's good to have this information before seeing the oncologist and surgeon. I am trying to locate opinions of dr here in Indianapolis to see who to use. My ge has referred me to drs in the IU health group. My Dad wants me to try cancer treatment centers of America. Anyone have any thoughts?
Many folks have chosen a facility designated by the National Cancer Institute.
Here is a link where you can find them by geographical location. http://www.cancer.gov/research/nci-role/cancer-centers/find
First choice would be one designated as a comprehensive cancer center, second would be one dseignated as a cancer center. In some cases where travel distance is an issue you can go to one for evaluation and plan prep and then go to another for execution. IU Health is designated as an NCI cancer center.
I also find the use of an ultrasound for staging to be strange. Most get either a CT or CT/PET scan with contrast to help in initial staging. As said by others, even then not 100% until surgery is done.
If a biopsy was done and determined to be cancer, no need to wait on getting an oncologist and surgeon, who will likely want to do their own testing based on their requirements.
Please stick with us here. There are lots of folks who gladly share their experiences and also offer comfort and compassion that can only be given by those who have or are walking the same road.
Wishing you the best results as you get a plan in place.
Marie who loves kitties
0 -
GreatLovekitties said:Welcome karyns_dad
Many folks have chosen a facility designated by the National Cancer Institute.
Here is a link where you can find them by geographical location. http://www.cancer.gov/research/nci-role/cancer-centers/find
First choice would be one designated as a comprehensive cancer center, second would be one dseignated as a cancer center. In some cases where travel distance is an issue you can go to one for evaluation and plan prep and then go to another for execution. IU Health is designated as an NCI cancer center.
I also find the use of an ultrasound for staging to be strange. Most get either a CT or CT/PET scan with contrast to help in initial staging. As said by others, even then not 100% until surgery is done.
If a biopsy was done and determined to be cancer, no need to wait on getting an oncologist and surgeon, who will likely want to do their own testing based on their requirements.
Please stick with us here. There are lots of folks who gladly share their experiences and also offer comfort and compassion that can only be given by those who have or are walking the same road.
Wishing you the best results as you get a plan in place.
Marie who loves kitties
The link and description is perfect. (Plus the rest also)
0 -
Thanks
Thanks all for the information and encouragement. I have put a call in myself to schedule an appointment with a surgeon and oncologist from IU. I keep reading and thinking it doesn't hurt to seek other opinions on how to move forward.
0 -
IUkaryns_dad said:Thanks
Thanks all for the information and encouragement. I have put a call in myself to schedule an appointment with a surgeon and oncologist from IU. I keep reading and thinking it doesn't hurt to seek other opinions on how to move forward.
Second opinions are a great plan! IU is probably the place to be rather than the cancer center. It may be a bumpy ride, but it is beatable.
I was diagnosed at age 77 and am now 83 and NED these last 5 years. Being young is to your advantage! Good Luck! Take it a day at a time and assume all will turn out well.
0 -
I am sorry you have to be
I am sorry you have to be here but glad you found us early on in your journey. I didn't find this site until 6 years after I was diagnosed. BTW I was diagnosed stage IV 10 years ago this month and still going. My best advice is try not to panic. Take lots of deep breaths and get second opinions. Most of us are in a daze going through the initial surgeryies and treatments and just do whatever the doctors that are asigned to us tell us to do. BTW I am a Christian as well.
0 -
Doctors
My doctors still say the Endoscopic Ultrasound Tuesday is for staging. He has scheduled me an appointment with an oncologist and a colorectal surgeon for Monday the 26th. I am a little dismayed everything is a week away.
Should I request a general surgeon in case things have spread. I keep feeling pains. Now in chest also. Amazing how I did not feel these things prior to the colonoscopy.
0 -
Hello there!karyns_dad said:Doctors
My doctors still say the Endoscopic Ultrasound Tuesday is for staging. He has scheduled me an appointment with an oncologist and a colorectal surgeon for Monday the 26th. I am a little dismayed everything is a week away.
Should I request a general surgeon in case things have spread. I keep feeling pains. Now in chest also. Amazing how I did not feel these things prior to the colonoscopy.
First off, I am very sorry you have been diagnosed.
Second, all of these new pains are probably psychosomatic. The exact same thing happens (note I use present tense) to me, ALL OF THE TIME.
I know that I have the remains of my liver tumour sitting in my liver, so I feel it. Well, I feel it when I am doing nothing and have time to be thinking again 'what if it returns'. When I think that way, I can feel my liver, and of course, I think that it has returned. I have expereinced this for the past 18 months, and I have had 18 months worth of clear scans.
Don't feel bad about it though; it is normal to be worried, especially when you are new to this, and every day you think your tumour is growing or spreading and all you want is for treatment to start and to get rid of it.
I'll just throw one thing out at you to gnaw over. When I was going through chemo, it was not an easy time for me, mentally or physically. I discovered Guided Imagery and then Meditation. WOW! WOW! WOW! I can't tell you how much this changed my life. Think it over. It may or may not be something for you, but I thought I would share.
Good luck with all of your upcoming tests. Get used to them, because they will be a major part of your life. You love them and you hate them.
You've made a great move in joining us here. There are so many wonderful people, patients and caregivers, with so much information and advice.
Take good care.
Sue - Trubrit0 -
Sorrykaryns_dad said:Doctors
My doctors still say the Endoscopic Ultrasound Tuesday is for staging. He has scheduled me an appointment with an oncologist and a colorectal surgeon for Monday the 26th. I am a little dismayed everything is a week away.
Should I request a general surgeon in case things have spread. I keep feeling pains. Now in chest also. Amazing how I did not feel these things prior to the colonoscopy.
Unfortunately being part of this means every ache and pain everywhere plays with your mind. Eventually it settles somewhat. I had an issue with a tooth and felt some swelling in my neck (just infection) but it happens.
As to general surgeon, I would tend to go with a CRC surgeon and oncologist. They know what is happening and where it can go. Find the best you can. As to the ultrasound for staging, if they think it is correct and you trust the doctor. Even in that event, make sure to get the report and a disc of the scan to bring for a second.
A bit easier said than done, but try not to worry too much. Of course there is going to be worry, but it is what it is and it is time to get the plan in place. One thing that I tried to do through this is not go through "dark places." Not to say there will not be times where it will happen, but for me it was a lot better to shake it off and head forward.
Hang in there, you are on your way and many of us have beaten it or in the process of beating it.
0 -
Colon Cancer
Hi, I was diagnosed on May 26, 2015. I had my colonoscopy on 5/22/2015. This was my first one after turning 50yrs. My GI doctor was very quick to put things into place. After I had my colonoscopy (same day). I had a CT scan at that time he could only tell me that I had a tumor in my sigmoid colon. My GI doctor made my appt for the Surgeon before even coming to talk with me (after my colonoscopy) and that appt was for 5/26/15 and that is when I was told it was a clinical stage II due to the only way you can stage a tumor is after surgery. I had surgery on June 4, 2015 and I had 10 inches of my colon removed and my staging was confirmed at a Stage IIB. The reason for the Stage IIB was because my tumor marker was a T4 , my tumor was right against my colon wall it did not go through but if I had waited much longer I probably would be a Stage III. All my lymph nodes (20) were clear and no metastsis. I have been very Blessed and Surrender all to GOD! GOD has been my Rock along with my very supportive husband, family and friends. I am a Register Nurse and was stunned when I found out! I have had peace with it and relay on my Faith every day! I was off 3 months of work and return back on 8/24/15 Full-time. I have been taking Chemo (oral) since mid- July, there has been adjustments but I am tolerating the side effects pretty good. I have my days and my second week of Chemo is always the most difficult. I am half way through my treatment and will have a CT scan next week. I look forward to the end. I will mention one more thing. The word cancer changed my life for the better. It took away the anger and gave me a new way to look at life and how short it really is. Live for today and don't worry about tomorrow let tomorrow worry about itself. Blessing!!
I am very confused why your doctor is doing an ultrasound, to me that does not sound right. I agree with the other person CT scan or Pet scan. Why is he/she moving so slow in getting this going?? God can work miracles. I would encourage you to reach out to your Church, Family, Friends and who is a believer to pray because the POWER of PRAYER is amazing! God is in control.
0 -
getting those extra years
There is a lot of information that is not "standard" but can be used to better identify advanced cancer, treatment options, and monitor treatments. In most cases, a board certified colorectal surgeon is very important to best results with advanced cancer focused on removing the primary CRC. An outstanding surgeon in other specialized areas, is often required for distant metastates.
The first thing we did was to use this LEF information about cimetidine and supplements of things to take before and after surgery, and other treatments. Especially cimetidine, high dosage vitamin D, lipoic acid, coQ10, MK4 and some vitamin C ***before*** surgery were important to my wife. All have made a difference. This article on cancer surgery was very helpful too.
Be warned doctors are often not plugged into the supernutrition, non standard treatment and testing angles, and you will need to be backed up by outside medical support. The supplelments and extra drugs like cimetidine or celebrex need agreement for surgery. The extra testing is often done independently of the early doctors, until knowledgeable support can be found and brought to bear.
Below is extra pre-surgical bloodwork we've gotten to deal with metastatic colon cancer. Many panels are not automatically included in new CRC patients' blood test surveys, which are often just CEA, CMP (or a CHEM12 or 20) and CBC:
cancer markers: CEA, CA19-9, AFP, CA125, CA72-4, quantitative D-dimer; extra liver markers: LDH, GGT, BILI; inflamation markers CRP, ESR; angiogenisis and metal markers: ceruloplasmin, ferrritin; common CRC deficiency marker: 25-hydroxy-vitamin D, PT/INR. Before surgery was the time to get this baseline blood data, even by independent means. We pay cash, if insurance doesn't cover something. We can also order lab tests online.
This bloodwork is not standard, but they can be combined to far better assess and treat metastatic cancer than "standard". If someone tells you things like, "that's not standard" or "that's only a (liver, pancreatic, ovarian) cancer marker", at best, they are "average" and uninformed on the relevant literature. In the (potentially) metastatic cancer world, average or mediocre is not the way to play such a harsh game. Most of all, we acted sooner, carefully, rather than wait for universal agreement.
#1100
0 -
EUSkaryns_dad said:Doctors
My doctors still say the Endoscopic Ultrasound Tuesday is for staging. He has scheduled me an appointment with an oncologist and a colorectal surgeon for Monday the 26th. I am a little dismayed everything is a week away.
Should I request a general surgeon in case things have spread. I keep feeling pains. Now in chest also. Amazing how I did not feel these things prior to the colonoscopy.
I had an EUS as part of my diagnosis / staging. It was performed by my GI doc who performed the colonoscopy. From the colonoscopy, he could tell I had a tumor, the ultrasound helped him see, size it and determine if it broke through the wall. It also allowed him to see enlarged lymph nodes around the tumor. A CT scan afterwords was also part of the staging, showing tumors in the liver.
I currently have new rectal tumors that don't show up on a pet or ct scan, so instead of questioning the EUS, I would happily let them use the tools at their disposal to get the best views. My oncologist said that due to the type of tissue around the rectum, it can sometimes difficult to get a good view.
0 -
Thanks Steve444Steve444 said:EUS
I had an EUS as part of my diagnosis / staging. It was performed by my GI doc who performed the colonoscopy. From the colonoscopy, he could tell I had a tumor, the ultrasound helped him see, size it and determine if it broke through the wall. It also allowed him to see enlarged lymph nodes around the tumor. A CT scan afterwords was also part of the staging, showing tumors in the liver.
I currently have new rectal tumors that don't show up on a pet or ct scan, so instead of questioning the EUS, I would happily let them use the tools at their disposal to get the best views. My oncologist said that due to the type of tissue around the rectum, it can sometimes difficult to get a good view.
It is good to know others out there have had the EUS for staging.
Thanks for the information.
Jeff
0 -
ThanksNEDbound said:hello!
Hi karyns_dad! I hope your ultrasound yesterday went okay. Thinking of you and your family!
Summer
Things went very well. No breakthrough. Stage 1. A CT scan is scheduled for Tuesday to check things out liver and lungs.
0 -
Fantastic!karyns_dad said:Thanks
Things went very well. No breakthrough. Stage 1. A CT scan is scheduled for Tuesday to check things out liver and lungs.
Great news!
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards