brand spanking new

[Ashlee H.]

Jess - I am so sorry you even have to know this website exists! Everyone will tell you - take a breathe. No need to make immediate decisions. When I was first DX, my ONC said I would have to have my whole colon removed, wanted me to have genetic counseling, and basically gave me 6 months to live. I wanted to go to a specialist for surgery, and she didn't think that was necessary - said the GP could do the surgery. Three years later, I'm still in the fight - but only had about 18" of my colon removed, and genetic counseling was not necessary. I went to a large Medical Center and got the best surgeon I could find. I changed ONC (oddly enough, my current one is in the same practice - but it's a very large practice) and he is very aggressive in dealing with my cancer. He encourages me to have 2nd opinions and have referred me to top surgeons.
Start with a notebook and get copies of all your tests. Get a pad of paper and start to write down questions. Go to the terminology thread here and start to learn about the words you will hear. Come here and post your questions. You will find people with a lot of experience and advice. Lots of people here are very young and I have no doubt you will quickly bond with a few of them.
-Ashlee

[frugal]

Jessica,
I know it's hard, but take a deep breath. Definitely get a second opinion. Surgery is a given. So talk to a surgeon or two. It would seem prudent to see a gynecologist too (not something I have any experience with ). You're going to be getting a lot of information so take the time to process it all. Ask questions. Make decisions with the best info you can get. But, don't get ahead of yourself.
Wish you didn't have to be here but you couldn't have found a better place to talk to people who've been down this road.
John

[WorriedWife]

Dear Jessica...

I am so sorry about your outcome. I have been keeping up with your posts and was praying it was nothing. I, my husband, are like you. Still in shock he has colon cancer. It's like you are going about your life, tring to get ahead, trying to make more money, trying to plan a future, trying to have fun and relax too..and then all of a sudden some Dr. tells you that you have cancer. We were like....what??? I don't think anyone said anything for a few minutes. I actually do not even remember most of that appt. Definately keep us posted on how things are going. Stay calm and take notes like everyone here suggested. Again, I'm so sorry about this. I came here a few weeks ago and everyone is super nice in answering questions. I know NOTHING about cancer until I came here. I learned more here that I did at the Dr.s offices. You are in my thoughts and prayers. Ask your Dr. what caused it. I am alway curious to what they say. The Dr. said "lifestyle" when we asked about what caused my husbands.

Stay strong, praying for you....

[jnfrmbrwn]

Hey Jess,

I'm really sorry to hear about your diagnosis. Just remember that you will get through it no matter what - you'll surprise yourself at how strong you can be! I am 24 yr old female and just had my surgery so I can relate. I had a lapirscopic colon resection where they took out 12 inches of my colon. Everything is SO overwhelming at first and really hard to accept but I am not lying, it gets easier. Just take it a day at a time. Please don't hesitate to private message me or email me at any time with questions. I am new to this too but I am more than happy to share any knowledge I've acquired over the weeks since I found out. I can relate to the awkwardness of telling your boss, your close friends, your not so close friends, that girl you see at a bar once a month whose not really your friend but enthusiastically asks how you are...it gets weird. Our age group is just weird. It sounds like you have an amazing support system and that is one of the most important things. My boyfriend has also been amazing and I can not tell you how much he will be your rock. You're lucky to have him! Good luck & kicks it's ass. xo

jnfrmbrwn@gmail.com

[kims]

Jess -

Even though it seems really overwhelming right now, YOU WILL GET THROUGH THIS! Everything seems really uncertain with the flurry of tests. I found the uncertainty to be the most scary. Once I knew how the surgery was going to be done and what the plan was for chemotherapy, the whole thing seemed much easier to manage. You have probably already been given a lot of this advice but I'll mention it again. 1) Take someone that you trust with you to your appointments. It's a lot of information to absorb, especially given the emotions that go along with everything. That person can take notes for you and also ask questions that may not occur to you. It's also just nice to have the support. 2) Start keeping a notebook and file for yourself. I bought a divided file folder. Ask for copies of your lab reports, pathology reports, surgical reports and keep them. I cannot tell you how many times I have needed them. You can also keep copies of info that the doctors and nurses give you on drugs and side effects, nutrition, etc. 3) Before you go to appointments, write down the questions you want to ask. Some doctors are very rushed and if you don't pin them down, its tough to get questions answered. 4) Use the internet wisely and sparingly. My husband used to say - "stay off of Dr. Google!" It's a great resource for researching side effects and finding support groups. Its also scary and a source of misinformation. A lot of the statistics are old an inaccurate. Ignore them or they will just upset you. 5) Accept help from friends and family when you need it. Cooking, cleaning, laundry - hell yeah, take help when people offer!

You should check out an organization called "Chris4life" It is colon cancer awareness and support non profit. There is a video on their website that is for the newly diagnosed. There is a young woman named Rachel Yingling on the video. She was diagnosed in her late 20's with stage III cc. She talks about her experiences as a young person diagnosed with cc.

I will be thinking of you!

[jnfrmbrwn]

Also wanted to mention one thing I forgot in my last post - my doctors said the same thing about seeing a genetic counselor. In taking the whole colon out - I think in this case it would be a preventative measure. This may be because some people that acquire colon cancer at a young age have Lynch Syndrome which predisposes you to colon and other cancers such as ovarian & uterin. They would take your whole colon out so your chance of reoccurrence is low. Your doctor may be thinking this because you are young & maybe he is not used to treating people your age so it is his first guess. While this is totally a possibility, not everyone that is young has Lynch Syndrome. Just keep asking a million questions...be annoying. My doctors didn't tell me until AFTER they wrote it on my chart and a nurse blurted it out and I had no idea. I still don't even know if I have it. My surgeon thought it'd be best to just take out the tumor and then just take it step by step. Genetic testing can take up to a month depending and we didn't want to wait that long anyway, but of course it could be different everywhere. Not sure if this is why your doc suggested it but thats what they said to me so thought I'd share!

xo Jen

[justjessica]

I am having epiphanies this morning. While researching Lynch disease (what my Dr had mentioned as a possible genetic cause) I realized that Lynch disease also can cause brain cancer, rare but it can. My brother died of a grade4 GBM, the type of tumor most related to Lynch. My family also has a history of cysts, skin mostly but also tonsil/gland issues. It also can cause endometriosis cancer, what they were worried about with my pelvic MRI. Now I am research endometriosis and I have all those symptoms. Sever periods,incapacitating cramps etc.I also have had anemia for over a year with no known cause. It also says that endometriosis can mimic colon cancer in younger women, causing misdiagnosis's of colon cancer. I am having that light bulb moment where things fall into place. I have my ex mother in law connecting me to many different Dr's (shes in the medical field). I have a Ct of my chest this morning and I was able to get my MRI of my pelvis on disc to give to a gynecologist/oncology specialist. He also just randomly received his Lynch disease testing kit this week!!!! It seems things are moving in the right direction and I may find out what is causing all of this soon. I want the right treatment plan so I can fight this in the appropriate ways. The Dr that has the Lynch disease testing kit also knows tons of Dr's in the area and is willing to coordinate my care. I am feeling very blessed to know the right people who know all the right people! I feel better now that we may be close to figuring this out and find what I need to do. My work has been understanding about my sudden issues and my boyfriend is being amazing. He is trying to handle the stress but is definitely showing some major anxiety. I am feeling very guilty for putting him through this not to mention my parents since they've lost one child to cancer already. I have 6 remaining siblings that will be affected by a diagnosis of Lynch so I am hoping that isn't the case. Anways, thank you again for all your responses and I will post soon.


Jess

[RayGirl]

just wanted to send you a hug. The early days were such a whirlwind. I'm glad you are finding a doctor that you can trust to help coordinate your care.

There is also always an opportunity to consult with one of the big medical centers but have your treatments managed locally. So if you are still not comfortable that your doctor unprepared with the uniqueness of your case, do not hestitate to ask for a referral or at least a consult with one major medical centers. They tend to have seen a lot more the unusual cases and have more experience. Finding doctors that you are comfortable with make this process more bearable.

Good luck!

[WorriedWife]

Dear Ray...how would a person consult with a larger center? Wouldn't we have to drive there? Or do they talk to you over the phone. I always wanted to consult with sloan kettering....but i don't know how

[juliej]

how would a person consult with a larger center? Wouldn't we have to drive there? Or do they talk to you over the phone. I always wanted to consult with sloan kettering....but i don't know how

WorriedWife, the quickest and simplest route is to get a referral from your doctor. If he/she doesn't know anyone at Sloan or won't do a referral for some reason, you can call them yourself to make an appointment for a consultation.

800-525-2225 Mon–Fri, 8:30 AM–5:00 PM, ET

You'll need to send copies of all your CT scans, treatment history, and slides of your tumor. They talk you through doing all that when you call them. You can stay ay Miracle House for $50 a night, and if you can't afford a flight, Corporate Angels will fly you for free in a corporate jet.

http://www.miraclehouse.org/index.php

http://www.corpangelnetwork.org/

Hope this helps!
Julie

[live2jett]

Hi Jessica,
your name caught my eye as i was scrolling down the threads(your name holds some special meaning to some of us in the club)...First welcome to the family. So sorry that you had to come play with us...but happy that you have found the most amazing colon club!!! We are here for you anytime and take the advice from the previous post and take it one day at a time..... and breath....and another breath...the roller coaster goes up and down on this ride and I hope that when things calm down ...you will be able to have the tools, info, friends and family to walk with you during this journey....You can ask anyone of us... the first few days of diagnosis are rough....but coming here to Colon club has given us MORE than any doctor could prescribe. Here is a BIG HUG...

[michelle c]

Hi Jess,

This must be so overwhelming for you right now. Pleased to hear that you have support.Take one day at a time, and know that we are here for you, whenever you want to ask questions or just to have a vent....we get it. I remember feeling very lonely when I was diagnosed even though I had lots of support, if that makes sense. All the best for your upcoming appointments and I hope you get some answers and a plan in place soon. Thinking of you and sending positive thoughts your way.

Love and hugs,

Michelle

[horizon]

I don't know how I missed this thread. It's so overwhelming at first, but it sounds like you're taking the right steps. I echo the advice to just try and take it one day at a time.

[justjessica]

I need to vent. So I have decided to get a second opinion because I just didn't feel comfortable with this other surgeon and his office is run terribly. No one seems to know what they are doing, you can hear arguments happening between the office manager and her daughter a receptionist. Also I had gone in and he was saying how I need to see an oncologist, a gynecologist and geneticist before he would do surgery. Then two days later I get a call from his office saying I need to come in a schedule my surgery and they want to do it Thursday(as in yesterday the 9th). I was like ummmmm no. The fact that he said one thing then another. Not to mention he was saying how I should consider a full removal of my colon. I am 31, one tumor and never had any surgeries. Why go to such extremes?! So I am seeing a new surgeon on Monday and an oncologist. I called their office to make sure they have received my records. NOPE of course not, the first surgeon's office is run so poorly that they can't even get my records over.So frustrated. I just want a date for surgery and to know if I am looking at chemo or radiation. I have a life to plan! Blah. That's today, just blah!

[justin case]

You're probably doing the right thing. You really need to be comfortable with your doctors, first and foremost, as your life could well be in their hands. But if surgery was recommended yesterday, I would'nt dilly, dally.
Regards,
Michael