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new to this board and need help please

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

I am 38 and was diagnosed 3 weeks ago by a routine colonoscopy. I was having mild diareah with blood in it. I have been diagnosed with stage 4 with mets to liver. I have had a colon resection already ( on july 30) and am waiting for the next step. I live in Florida and they want me to go to Miami for liver resection after some chemo. Is this the standard plan. They removed 17 lymph nodes and all were clear. PET scan showed mass in colon and liver only.
I am just so overwhelmed right now, and just want to make sure I am headed in the right direction.

CHristy

PhillieG's picture
PhillieG
Posts: 4903
Joined: May 2005

Sorry to hear of your diagnosis but you've come to a very helpful site for info and support. I am a stage IV living with cancer for over 5 years. They did the chemo first and then surgery on me. It depends on the case but for me, my colon wasn't that affected and my liver had tumors in the "wrong" places so we had to do chemo to make them operable. It worked like a charm. Since then it did spread to my lungs which is not uncommon at all. I've been dealing with that for about 3 years and making good headway.
Back to the liver, sometimes they will do the resection then surgery. There is no right or wrong way, only a good team of doctors who will listen to you and answer your questions and don't give you an expiration date (as some do). I hope you have a good team that you are comfortable with.
You sound like you are headed in the right direction to me, hang in there.
-phil

Julie 44
Posts: 479
Joined: Oct 2008

Phil is right the right doctors mean everything..Make sure you are comfortable with them..I would also recommend getting a second opinion. If for nothing else just to know you are on the right track..It gave me a great peace of mind...Good luck and keep posting ask away because all of us have been there and done that is some way.....JULIE

eric38's picture
eric38
Posts: 588
Joined: May 2009

I am in your same boat. I was diagnosed with colon cancer that spread to the liver a little over 4 months ago. In that 4 month period I have turned 39 but was diagnosed at your age. I had 3 - 4 mets to liver , colon resection but still had cancer left in the pelvic and abdominal area too. After 3 months of treatment I have only residual stuff left in the liver. No evidence of disease in the pelvic region and some areas of low activity in the abdomen. So , I am still not quite in remission but as close as it gets without being there. I say this to let you know that it is possible to come a long way in a short amount of time, so there is alot of hope for you. If they are already discussing resection that means you are in about as good a shape as you can be for someone with stage 4. Don`t get me wrong,I am certainly not down playing it. It`s serious and scary but it is possible to beat this or live with it for a long time. Do not look at internet statistics, they are depressing and severely outdated. The newer stats are much more promising and new things are coming out all the time. The hardest part is the first few months. It`s alot to absorb and very scary. There are people on here that will provide you with alot of support and hope. The stories are amazing. There are many here who have been in remission for years after their stage 4 diagnosis. It`s depressing to have to deal with this at such a young age but it also works in your favor because youth is on your side. It would be alot harder on your body if you were older. I hope all goes well for you an welcome to the family because that is what we are here.

Eric

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

Thanks for the support. I have so many questions. I am making a list for when I see Onc. My liver mass is in upper lobe and is about 7 cm, why cant they go ahead and take it out before chemo. I am still recovering from colon resection, I got infection so I have a open wound that has to heal . A question about colon resection, I feel unconfortable in my chest on left side, like I guess maybe gas. Has anyone else felt this?
Eric did you have liver resection, colon resection?

PhillieG's picture
PhillieG
Posts: 4903
Joined: May 2005

As far as surgery BEFORE chemo, I've always had chemo before surgery. the reason being was to shrink the tumors. You should ask you Onc why they are doing what it is they are doing. I've had pain on my right side of my chest from the first operation. Meds help to some extent.
-phil

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Hi Christy,
Sorry to hear that you have stage4. My husband does too. We are new to this site also. You have come to the right place.Phil and Julie are very helpful as well as others that will answer your questions.
The Onc my husband is seeing said that surgery will never be an option. We are changing Docs on the 28th. He has mets to the liver and lungs and a spot on one of his adrenal glands. We feel that the Chemo is working for him.You do need someone who wants to help you live and not just treat you until you die. I say this because this is how I feel the Onc he is seeing now feels. Glad you joined us and it sounds like you are on the right track. Paula G.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Christy.

I was not diagnosed at Stage 4, but I wanted to welcome you to the group and encourage you to stop by often to let us know how your treatment is going. I think you'll find this a very helpful and supportive group!

*hugs*
Gail

kersha
Posts: 63
Joined: Jul 2009

Hi Christy just read your post sorry to here about what you are going through but keep hopeful. We live in Florida too my husband was diagnosed June of last year with mets to the liver. I do not know where your mets are located in your liver however my husband had 4 and here in Fl the surgeons at Moffitt was only able to do part of the surgery and the other one they were going to RFA however we went to MD Anderson in HOuston and he was able to have all removed. You can contact me if you like and I can give you more info.

Fay

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Hey Christy, I am in the same boat, stage 4 mets to liver and cancer in the stomach and some lymphnodes. I too have large mets to the liver around 6cm each (2) and alot of small ones throughout that can't be measured. They will not do resection or anyting until they get them to shrink. I have just finished 5 chemo treatments and will have my scan on Tues.Good luck to you and I will pray for shrinking tumors.God Bless, Patti

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

good luck and letme know the outcome. Did you already have colon resection? What kind of side effects with chemo?
I will be praying for you as well.\

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Christy, I did have my Colon resected in May 14th of 09,41 yrs. old. I had 6 weeks to recover and then Chemo. I have had a little nausea usually a couple of days after the 6 hr. bag comes off. I have neuropothy for about 5 days after. Tingling in fingers can't touch anything cold, can't drink anything cold or it will feel like needles. I do experience constipation after infusion so, I take Colace, and Miralax. I clean, cook, go to my kids sproting events (If not in the direct sun) grocery shop etc. By the way I am on Folfox with Avastan and I come home with a 46 hr. slow drip bag. The bag is the hardest thing for me, I usually stay in when I have that on. It's heavy and just gets on my nerves. Ask me any questions you like, I am here to help you. God Bless, Patti .......what are your Cea levels?

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

Immediatley after colon surgery my CEA went down to around 17, thats when I was still in hospital. I am just two weeks out of colon resection now. I am having strange pain in upper abdomen on right side now. Not sure if that is normal. I had infection after surgery and have open wound now but seems to be healing well. I go back to Doc(surgeon) for staples to be removed and hopefully then to chemo.

Julie 44
Posts: 479
Joined: Oct 2008

Make sure you ask your doctor to check out your new pain...I also starting having pains there and now I need my gallbladder removed...So check into it......JULIE

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Christy,

I'm sorry that you're having to go through all this. The good thing about this board is that we can all say "been there done that", and truly know what you are feeling and experiencing. Several other people have already given you good advice. When things are moving so quickly and you're feeling so overwhelmed- it's important to get another opinion from a good, major cancer center. The only name I know of in Florida is Shands- don't know where you've gone. I don't live in Florida, but a cousin of my husband does. He's been treated there and is getting ongoing care for his heart condition. He said he's heard very good things about their cancer center as well, but I don't actually know of anyone who's gone there for cancer. Anyhow, just know that insurance has to allow you a second opinion and, even if they don't cooperate in that, it's just very important to get that. Sometimes oncologists in different places will have a completely different approach and game plan- which could make the world of difference to you.

God bless,
Lisa

eric38's picture
eric38
Posts: 588
Joined: May 2009

I had colon resection before treatment. the rest they chose to address after chemo.I`ve been lucky. Besides the unitial pain from surgery the symptoms from my colon resection were mild. But I do know that it can cause you pain in your side and chest.

Eric

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Stage 4 cancer is a very shocking diagnosis to receive. However, I also was diagnosed stage 4 rectal cancer May 08 with 1 met to the liver and am now NED (No Evidence of Disease) after a year of treatments– radiation/chemo, 2 surgeries, and adjuvant chemo. Rectal cancer is managed a bit differently then colon cancer but the fact that you're considered for liver resection right now after some chemo, and that your lymph noses were clear, is awesome in the face of a serious diagnosis. Surgical removal of the cancer is considered the gold standard for a chance for a cure. Hang in there. I saw someone mention Shands in Florida and my sister is a 20 yr stage 3 cervical cancer survivor and she was treated at Shands.

Leslie

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