Newly Diagnosed

LindaJS · February 2011

Hi everyone

My husband was diagnosed with Mucinous Adenocarcinoma of the colon last Friday. He is 33, no family history and otherwise fit and healthy. He went to see his GP two weeks ago because of some pain & change to bowel habits. So its been a whirlwind fortnight. We still dont have a plan of attack. Our initial plan was a colectomy/periotenctomy/HIPEC - but were told yesterday that the cancer is too spread across his abdomen to proceed with that right now. So off to an oncologist tomorrow to discuss his PET scan & hopefully formulate some kind of plan.

We have a 3 year old daughter & are very worried about all the things that you all have no doubt gone through, work, money and life as we know it!

I mainly wanted to come in here as each time Ive googled for information the posts on this site have come up. So thank you. Its been very comforting to see that for so many people diagnosis is just the start of a long journey that doesnt have to end badly.

Thanks
Linda

Unknown · February 2011

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Lovekitties · February 2011

Hi Linda
So sorry that your family is having to deal with this, but as Gracie said you have come to the right place for information from folks who are in the fight and for support when you feel you just need somene to listen.

Many here would suggest you start a notebook as information will be coming at you at a rapid pace. Taking notes of doctor visits, reactions to treatments, questions that come up will help you keep up with it all.

Please be careful about getting stats from the internet. They come from studies which are probably outdated and new treatments are out there every day. We have lots of folks here who have beaten those stats and even doctors first guess at how things stand. Also being inoperable today does not mean that things won't get better and it will become a possibility.

Please keep us posted and don't be afraid to ask any questions or ask for emotional support. Lots of help to be had from these great folks.

Hugs,

Marie who loves kitties

jararno · February 2011

Linda
Welcome,

I am sorry about what your family is going through. It is hard at any age, but having this when you are young seems so much harder. You have the right attitude to help your husband through this journey. Remember to take time for yourself and your daughter too. Everyone handles the treatments, stress, prognosis differently....it isn't easy, but you can get through it.

Everyone will give you their advice ( good or bad ). Well meaning people have asked me how long I was given? I have had people who are surprised that I still have my hair! People try to argue with you about the diagnosis or tell you to get a different doctor. I have been amazed at the strange things people say. Try to ignore all the unsolicited advice.

Try to remember to breathe!

Take care,

Barb

geotina · February 2011

Linda:
Welcome to the Board. The members here will be a great source of information for you. Once you get your plan of attack in place, the board can offer you their experiences. You mention spread across his abdomen, has there been spread anywhere else like liver, lungs?

If possible, you may want to seek a second opinion if you are not on board with what the docs have to offer you at this time. Several on this board have had the HIPEC procedure so they can fill you in on what to expect in that regard. We were on board with our docs from day one and they have done well by us.

Another excellent source of information regarding spread to abdomen is the Colon Club. Check out their web site.

Take care and a deep breath as you proceed on this journey. It won't be easy so just keep one foot in front of the other. Write down all your questions for the docs so you don't forget anything and take notes on what they say so you don't forget what they tell you.

Take care - Tina

schnauzerheads · February 2011

Newly
Linda,
I'm sorry to hear about what you and your husband are going through. The fact that you're on line doing research, reaching out on this board, asking questions and helping your husband speaks volumes. I'm newly diagnosed, and the support from my wife, people on this board, friends and family is what gets me through. It's hard, but try not to let anything get you down... positive attitude and love will be your best allies. He's young, has a family to fight for, keep the faith! Don't be afraid to ask your doctor questions, or check out as many doctors as you need to in order to feel comfortable... find someone who will listen, not just gloss over your concerns. You can tell alot by a visit. There are lots of people going through this who can offer good referrals. We've added natural herbs, organic foods, vitamins etc to the chemo I'm starting tomorrow. Diet is important also, whatever it takes.
My wife and I, along with countless friends, family and people you haven't even met will be here for you.

Kevin

AnneCan · February 2011

Welcome Linda
I am glad you found this forum. It is a fantastic resource. I am so sorry to hear of your husband's diagnosis, but you have come to the right place.

krf · February 2011

Hey Linda, I'm sorry to hear
Hey Linda,
I'm sorry to hear of your husband's dx. It sounds like you are getting educated very quickly and that you have a good attitude - that's important. I know the feeling of wanting to get a plan in place RIGHT NOW and get going. When I was first diagnosed we went through several plans before settling on a course of action that made sense to all of us. Don't sweat a few extra days or a few extra tests to really get a handle on your husband's cancer. Don't hesitate t.o go to other places for more opinions. Your husband's cancer is probably not going to be very straightforward, and may not reveal its biology for a while. It might be important for you to be at a major cancer center.

I was 38 at dx in 7/09. I have a 5 year old son, and daughters 9 and 11. There are lots of folks on here that have kids. You're not alone. We're feeling your pain. We talk about how to deal with kids and cancer from time to time; so don't hesitate to bring it up if you're comfortable doing so.

At dx I had 10 or so liver mets and lots of peritoneal mets. Like your husband, I was not considered a candidate for surgery at first. I had a good response to chemo, and had cytoreductive surgery with HIPEC last April. It turned out not to be the 'cure' that we wanted, but it was still successful in several ways. If you ever want to hear more about my experience with this fun and exciting procedure, just let me know. You can ask here or send me a PM.

Good luck getting your plan in place.

Roger

I just realized that I responded from my wife's account rather than mine. She is also a member here, and I didn't realize she was logged on. That's her and the kids in the picture.

plh4gail · February 2011

so sorry
I'm here to offer any support I can. So sorry about the diagnosis!

Gail

pete43lost_at_sea · February 2011

Hi Linda, welcome and sorry
Life throws some unexpected challenges our way. Just try and be as calm and relaxed as you can. I have found this forum a wonderful informative and supportive place.

I also have read some books that have given me alot of peace and inner calm through the stresses colorectal cancer brings. my favourite two are bernie siege autor of peace, love and healing and petria king quest for life.

Try to make notes or record your specialist visits and attend together if you can.

goodluck,

pete

JoyceSteele · February 2011

Hello
Dear Linda: Just wanted to welcome you, Wish it was for some other reason but as so many have already said, you have come to the right place. When I was diagnosed with Stage IV, mets to liver, many, many large tumors I was told I was inoperable. That was in November 2009. After 6 mos of chemo, then maintanance with Avastin alone for 8 mos, this past week I visited Mayo Clinic. The tumors are much smaller, a lot are gone, but in the past few weeks they are becoming active once again.

Two days ago the surgeon reviewed my recent MRI, PET scan and I now have a consult with him this coming Tues. to discuss surgery. He says it looks pretty promising! It is almost like a miracle to me, maybe it is for sure. So come back to the board whenever you are down, scared, don't know what to think or where to turn to. You will find comfort, advice if you want it, and the most caring people I have ever met in my life. There are so many positive stories, and stories that will give you hope, and that is what you need as you fight this fight. As my oncology nurse said to me the first time I met her you have to "believe"... you and your husband will be in my prayers starting now. Take care and hugs for you both. Joyce

LindaJS · February 2011

Thank you
Thank you everyone.

The oncologist we saw today told us there are are mets to the omentum. So he is due to start Folfox/Avastin in the next couple of days. The hospital seem very good - we are in Australia - so probably not one people would know.

Not too sure where it will all go from here.

Thanks again.

ron50 · February 2011

LindaJS said:
Thank you
Thank you everyone.

The oncologist we saw today told us there are are mets to the omentum. So he is due to start Folfox/Avastin in the next couple of days. The hospital seem very good - we are in Australia - so probably not one people would know.

Not too sure where it will all go from here.

Thanks again.

G'day Linda
Pete-at-sea and I are both Aussies . Pete is down Sydney way and I am up at Nambour on the Sunshine Coast. Pete is in the middle of chemo and I am finished . I was dx in 1998 with stage 3c colon ca into 6 lymph nodes . I had 48 sessions of chemo on the coast and lost a good part of my ascending and transverse colon. I have been ca free for over 13 yrs now so there is plenty of hope. Best wishes for your treatment,Ron.

LindaJS · February 2011

ron50 said:
G'day Linda
Pete-at-sea and I are both Aussies . Pete is down Sydney way and I am up at Nambour on the Sunshine Coast. Pete is in the middle of chemo and I am finished . I was dx in 1998 with stage 3c colon ca into 6 lymph nodes . I had 48 sessions of chemo on the coast and lost a good part of my ascending and transverse colon. I have been ca free for over 13 yrs now so there is plenty of hope. Best wishes for your treatment,Ron.

Were in Perth - good to meet
Were in Perth - good to meet you! Nambour! Gosh - you guys got flooding! Hope that didnt affect you & yours.

Lori-S · February 2011

Linda
I am so sorry that you and your husband and family have to go through this. I want to welcome you to the board and please feel free to ask questions or just say hi and ask for some support. We have a lot of really knowledgable and caring people on the forum. HUGS

Nana b · February 2011

Lori-S said:
Linda
I am so sorry that you and your husband and family have to go through this. I want to welcome you to the board and please feel free to ask questions or just say hi and ask for some support. We have a lot of really knowledgable and caring people on the forum. HUGS

Welcome
Linda, cancer sucks big time! We are here for you! I have been cancer free almost 2 years. Hang in there. It can be done!!

HollyID · February 2011

LindaJS said:
Thank you
Thank you everyone.

The oncologist we saw today told us there are are mets to the omentum. So he is due to start Folfox/Avastin in the next couple of days. The hospital seem very good - we are in Australia - so probably not one people would know.

Not too sure where it will all go from here.

Thanks again.

Hi Linda...
I'm glad that there's a plan in place. Welcome to this board,though. It's one that's very rich in friendship and information.

Love and Hugs,

Holly

Newly Diagnosed

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