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sharonM
Posts: 12
Joined: May 2004

Hope there is room for one more in the group. My name is Sharon and I have recently (April) been diagnosed with stage IV colon cancer. I am 41 years old and having displayed no symptoms until I got "stomach flu", I was and am still in shock I guess. I have a 2cm tumor on my liver, but because not all of my cancerous lymphnodes could be removed due to location my oncologist considers me to be palliative. I really hate that word, I think even more than the word cancer. He is not the most optimistic guy I have ever met. I don't know if any of you have thoughts on these lymphnodes, but I would appreciate any ideas you may have. I have three wonderful children, 16, 12, and 9 as well as a great and supportive husband! I do find the mental game quite challenging at this point and don't know if it is a time thing. I just don't seem to be able to remove for longer than a few minutes at a time. You all seem like such a positive group and I look forward to your comments and any suggestions you may have.

Take Care,
Sharon

steved
Posts: 836
Joined: Apr 2004

Hi Sharon,
Sorry you had to join our group but welcome none the less. I'm 31 and diagnosed in February so not far on from yourself. I'm still waiting on my op as I had preop chemo and radiotherapy so in some ways you are ahead of me in this game.
I like your description of 'a mental game' which I think is a good way to look at it. Yes the mental side is often more of a challenge than the physical but the most poerful healer is time. Even in the couple of months I have been living with this I am amazed at what can become 'normal' and unremarkable given a bit of time. Don't expect to get your head around things in a matter of weeks as it defintiely takes longer and you will experience all sorts of highs and lows and other emotions along the way. Just roll with them and don't try to to hide form them. Be open with your family- harder with kids but they do appreciate honesty and are often more robust than we give them credit for. This website is also an excellent place to offload.
Hope you are feeling okay physically and keep in touch on these pages.
Steve

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Sharon,

The "semi-colons" are a wonderful group and welcome you with open arms (and computers). I'm so sorry you have to be here. It amazes (and saddens) me everytime I look and see how our group has grown in numbers. I'm so sorry about this disease, but you will hear some remarkable stories here about survivors who like yourself were diagnosed Stage IV and are making great strides. I was like you and had NO symptoms until I went for my annual exam and blood work and found out that I was anemic. Then it was like "all hell broke loose". I too was in shock and somewhat denial. I don't know about your lymph nodes that couldn't be removed, I had 10 removed and 2 were positive.

Please let us know how you are doing. Check some of our web sites for more information and some good coping advice. And feel free to use this site to vent anger, sadness, joy, fears, whatever. We have all been there and understand and will wrap you in our arms with lots of love and prayers.

Take care and God bless.

Kerry

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, sharonM -

ALWAYS room for another semicolon! Welcome. Like Steve and Kerry said, sorry you're here, but glad you've joined us. This is such a great group of folks.

OK... salutations out of the way. First thing that struck me in your post was the phrase "my oncologist considers me to be palliative. I really hate that word, I think even more than the word cancer. He is not the most optimistic guy I have ever met." UGH! Tells me it's time to seek out a new onc! If someone isn't fully engaged and positive and working FOR you (you're paying him aren't you? Remember: he's your consultant), then it's time to fire them and find someone who will be fully engaged and positive. If you were suing a tobacco company and your lawyer said you didn't have a very good case, wouldn't you go find one who said that it might be a battle, but he was going to fight it for you and you could win? You have four very good reasons to go find a better onc - 16, 12, 9 and (not a day over) 29.

Your mental game as you call it is what we often refer to as "Attitude" or 'Tude. Let me say that, unequivocally, your attitude will be the most important weapon you will have in your armory as you fight this dragon. Another weapon you will have is us - we're always here for you to listen to you vent, answer questions you have, lend you support - whatever you need. We call that sharpening your sword.

Looking forward to chatting with you, Sharon. Keeping you and your family in my thoughts and prayers.

- SpongeBob

carmen07
Posts: 120
Joined: Apr 2004

Sharon
I can't really answer your question on your doctors comments on the lymph nodes. I would recommend that you go to a large cancer center. They have more specialist dealing with specific types of Cancer.
My husband was diagnosed in October of 2003. It was a real shock to both of us. He had a hard time with accepting the fact he had cancer. We both did not care for the first Oncologist we met. We changed hospitals and doctors. We went to a larger Cancer Center and found that they had a team of doctors. If you are not comfortable with the doctor ask someone in your family to help you with finding another doctor. Some large Cancer Centers will work with your local hospital and instruct them on your treatment. I picked up all his medical records/Scans/and Pathology reports and made several copies until we made the decision of which doctor we would go to. Also our local hospital made a mistake on the patholgy report. They said he had all lymph were negative, when in fact one was positive.
Also go to CSN Home on your screen and read the amazing stories of Cancer Survivors. They have one man's story who survived Colon Cancer and they did not give him at the time that great of a prognosis.
It makes me angry also that so many more people are diagnosed with Colon Cancer under the age of 50. When are they ever going to change the recommended age of your first Colonscopy at age 50.
Take Care. I hope you are feeling alright. The people here our wonderful.

RMGill
Posts: 20
Joined: Apr 2004

Carmen, very good point about people getting this under 50. I had a full physical in August '03 because I had changed employers and had a new health plan. I was diagnosed with anemia, no explanation. Now I've read that is an idicator of cancers. Never thought a little bit of bathroom irregularities were an issue, kept taking OTC meds and ignored the issue till it got chronic. My primary care physician recommended I get some hemroid cream for the blood issue when I first sought treatment. Three times when getting diagnosed I heard a Dr say, "those are strange symptoms, you're too young for cancer, must be something else", before they figured out that's what it was. If nothing else, I hope to raise the awareness of those around me to this devastating disease. Even though 34 is young for this disease, a colonoscopy at that physical last summer would have lead to early detection and a much quicker recovery.

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

RM -

Sounds just like me! I was 37 when Dxed - pathology said my tumors had been with me since age 33 or 34. Hereditary.

I agree - C-scope (and NOT sigmoid-scope)after 40 is too late!

Here's to us young 'uns

- SpongeBob

cheer3's picture
cheer3
Posts: 106
Joined: May 2003

Sharon, I am so sorry. You will find many people here who can help you , often when others can't. They are wonderful people.
I hope you are going to consider another onc.
I too was stage IV, liver mets, and positive lymphs.The DR who did my colectomy and liver biopsy did not feel I had a chance. He did not want me to have the liver resection. I went to the oncologist and He felt since I was so healthy otherwise, I had a good chance. He gave me my options, I went with the most agressive treatment and I have been in clinical remission since Aug. 2003, just had my check and still remain so.
What I really am trying to say is don't give up, find a DR who can help you.
It takes time to get use to the idea that you have cancer.Be good to yourself, take all the time you need to get through each stage.
After all this time, I still have times when I become upset, but most of the time I have been very positive.
You will be in my prayers.
Jean

RMGill
Posts: 20
Joined: Apr 2004

Much like you I was recently diagnosed with stage IV a couple months ago. I'm only 34, and had very few symptoms. I heard that miserable term palliative as well. Almost didn't even bother to start chemo, but got a lot of encouragement from this group.

However, after the first two rounds of treatment, my CEA levels have dropped dramatically, all the liver enzymes look good, and the symptoms (irregular & bloody stools) are all gone. Definately a very long battle still ahead, but heading in the right direction, so don't let them make you give up.

My oncologist gave me the same answers at first... plan your will and enjoy your remaining days (he's gotten far more positive the last couple visits). But as others have mentioned, this can be beat. Lets you and I join those who have!

Rick

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hey Sharon!--welcome to the family!
That word?---pallietive----cor--can't spell tha word n it don't fit into kanga's vocabulary either!
There are lots of survivors here from stage iv and you are gunna be one of 'em!!!Don't let anyone tell you otherwise!

BTW--yu gotta forgive 'ol kangas slang 'cos my convict ancestors brought it over to OZ.
(not a lot here understand kanga --lol)

You gotta be very lenient on yourself Sharon--cry if yu have to and yu make sure yu let you're family know just how yu feel--be honest--sure -it is tough on them but it will help them to understand just how this horrible thing affects our minds--not just the body.
All of us here are on the rollercoater--lots are in the waiting room--me--one of those in remission trying with all hope not to be afflicted with mets. in ongoing tests.
Like you I am lucky to have 3 kids and a loving carer(Jen) to help me thru this.
Be afraid Sharon--that is not shamefull-nor is it shamefull to show your true feelings.We are all in fear of our lives but in time learn to deal with it in our own way.
You have the luv and support here from all of us--and then some.

RE; early diagnosis; you know--I was dx'd in 97 with haemharroids and it "really was cancer" way back then---I was 43 then and the cancer was not found 'til aug. 2003.
Had surg for colon removal then 6 months chemo--gee--wish there had been a screening test for under 50's!!!!!!!!!
keep us posted Sharon
luv n huggs-kanga n Jen

andreae
Posts: 238
Joined: Sep 2003

Dear Sharon,

I'm so sorry about the recent diagnosis. I can assure you, however, that things will get easier with time. Life will eventually reassemble into a "new normal". I don't think that things will ever go back to being the "same" but something beautiful and worth living for can emerge. You obviously have a lot to live for and they will provide you with the strength, faith and courage to face this battle.

I also want to say that Stage 4 is not a death sentence (unlike some doctors have their patients believe)! I was diagnosed with stage 3 rectal cancer in January 2003. After I completed the chemo/surgery/radiation regime in September, my first scan revealed lung metastases. Since last November, I have been on chemo and my latest scan has revealed no progression since! I'm going to be operated on this summer and we're going for cure. When my mets. were discover, my original oncologist said I was considered "incurable" and was to be treated as "palliative". Like you, I hate that word more than the cancer. So I switched oncologist. My new doctor is much more upbeat and positive and is more suited to my attitude. The doctor realizes that I'm very much aware of the grim prognosis but that I am ready, willing and able to fight for my life. I also enjoy this new doctor because he fits things into my life as much as possible. He supported my decision to go to University on chemo and I traveled during Christmas vacation. He also respects the fact that before the surgeries begin, I'm going to finish up my summer courses and fit in a month of vacation. I decided to live with cancer... I try to consider it an extracurricular activity.

Be patient with yourself because the mental game is tough - probably the toughest part. Let those around you support and love you. And use this board for support and inspiration. When I'm down, I seek out survivor stories and you'll definitely find many here.

Be well,
Andrea

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Sharon,

I cannot say things any better than those who have posted. We all understand exactly how you feel. I was stage 4, (notice the word WAS not AM), and diagnosed at age 33. Today, I am all clear, a healthy 36 yr old. I had pre-surgery chemo and radiation in an effort to shrink the tumor (2.5 cm). During my surgery is when they found the liver mets. Two lymph nodes were also positive. They removed 40% of my liver, and 100% of the cancer. Come here anytime you need advice, a fresh ear to vent to, or just wanna see how everyone is doing. We're a great bunch, you'll soon learn.

Keep us updated, and maybe look into another oncologist---SpongeBob is right (again!)

Stacy

ipetrou
Posts: 33
Joined: May 2004

Sharon - get another doctor. And if you can get your treatment near Chicago consider seeing Keith Block at the Block Institute (they integrate diet, nutrition, etc. and give chemo as well there and have a really good track record and are all real people who care about you). At a minimum, go to a national cancer center like MD Anderson or Sloan Kettering. You can't take no for an answer. I know it is so hard when first hit with all of this - my 34-year-old husband was diagnosed in early March with what they think is Stage III - but you need to start fighting now and fighting hard and knowing you will make it.

Fitlisa
Posts: 99
Joined: May 2004

Hi Sharon,

Welcome to our community. I am a 42 year old female who was just diagnosed on May 11th with Stage III colon cancer - also with no symptoms except for what I thought was a left ovarian cyst. I have had surgery to remove 2 feet of colon and just started my chemo therapy (Folfox) last week. I am a newlywed, having celebrated my 6 month anniversary yesterday.

I know exactly what you mean when you talk of the mental game- you do sound like you have a wonderful support unit in your family. For me also, my world seemed to come to a stop when I heard the word "cancer" but, as others have posted here also, its amazing what we can cope with and how strong we really are when we have to be.

I have no idea why something like this happens to good people, although I have asked myself that lately. What I do believe is that with help from others, such as us on this site who know exactly how you feel, as well as your family and friends, we are able to live our life (with a few alterations) and are often amazed at our inner strength.

Post here often, write to us, vent your feelings and fears, that is most definitely what we are here for.

All my best,
Lisa

PS I also wholeheartedly agree with Colonoscopy much earlier- they didnt even think of colon cancer in me at first...its definitely happening to young women (and men) who heretofore werent even being considered candidates....wonder what can be done?????

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