Colon Cancer Survivors

JanJan63 said:

I love hearing about people

I love hearing about people living with and after cancer. It's devastating. It affects our lives for the rest of our time on earth. But it's what we do with that that defines us and makes life worth living. We can sit around feeling badly for ourselves and waste away while telling ourselves that we're victims and to be pitied. Or we can pull on our big girl panties or big boy shorts and get on with life as best we can. Our lives are not diminished because we have limitations, they are still the lives we have and they may be different or they might be the same as previously but they are what we have now. We either live it the best we can or we crumble. I don't think there's anyone on here who isn't a fighter and who isn't giving it their all. This forum seems to be all about living despite cancer and fighting it as best we can. I've seen some new people come on who are so frightened of the future become emboldened by what is offered. They see that it can be dealt with and lived with and that the dagnosis is not an automatic death sentence for most of us. Sadly, for some it is. But even they can go down fighting.

Strength to all of us, we are the toughest of the tough.

Jan 

I so agree with everything you have said, Jan.  I just hope my cousin can get the help she will need to fight for her survival.  Without hope, there is no tomorrow.

Carol

ron50 said:

My reflections on survival

    There are a lot of new survivors on board now. I was dxed back in 1998 with an aggressive tumour of the transverse and descending colon. I had surgery. My surgeon said it was so aggressive he could almost see it growing. I was staged 3 c into 6 of 13 lymph nodes.I had 48 weeks of chemo , mainly 5Fu via drip line enhanced with a drug called levamisole. It was banned in 2001 for often fatal side effects and questions on whether it had any impact on cancer at all.I am now in my 20th year cancer free. I have a lot of long term side effects. One of the wishes I hear most from survivors is to return to a normal life. I am not sure I want to. In my normal life I developed cancer. I live my life as a survivor. In my normal life I really didn't take my health that seriously. Sure I had lots of symtoms but hey I was 48 and everyone gets a few niggles when they appraoch fifty. All those little symptoms suddenly blossomed into a life threatening condition with the diagnosis of cancer. I began to learn about my illness, how and why I got it and the avenues available to stop it coming back. I remember my surgeon telling me that I was cured of that cancer but he said if I drop my guard I would be in the same situation. Vigilence and surveilance were his suggestions..Whatever follow up tests are advised , have them on time . Any changes you note in your bodily functions take note of them and act by telling your doctors and make sure they follow up , a pat on the shoulder is not enough.  Medicine has protocols , they are not infallable. I recently had a scope . it was at three years from my last one . I was not happy about it and made a lot of noise about it. They kept saying you had a couple of clear scopes , you technically should be out to five years. My reply was they had not sat in the surgeons office and been told "I could almost see it growing"! I had the scope and they removed four polyps , the biggest 11 mm. I am now permanently on two yearly scopes.

         I follow the same regime with my long term side effects. The medical profession are loathe to even admit tthat long term side effects exist. I have several auto-immune problems. Nephrotic syndrome of the kidneys , life threatening and treated twice daily with cyclosporine. When I first suffered protein-urea i asked for a referral to a nephrologist. My gp said you find one ad I will refer you. I found one and got a referral. He was awful and nearly killed me with prednisone. Found another, just as bad , he nearly killed me with blood pressure meds. Third tinme lucky my new doc is brilliant. He not only keeps my protein loss down he constanly monitors my blood pressure and controls my congestive heart failure. He keeps an eye on my liver(auto-immune hepatitis) and tries to lessen the impact of psoriatic and osteo arthritis to give me some quality of life. We actually talk and he allows me to monitor and alter things like my bp and type two diabetes meds to reflect what my blood pressure and glucometer are telling me.

        The other problem encounterred by survivors is the void at the end of treatment. It does exist , in my twenty years of survival no one from the medical profession has contacted me to find out what the long term results of taking a dangerous banned substance are or even why I am still alive. This is where we can fail as a survivor. I had to become my own advocate. I have had severe motor sensory peripheral neuropathy for 15 years I saw a neurologist who confirmed it with nerve conductivity tests. He would not treat it because he did not know what caused it. I showed him articles on the long term effects of 5Fu combined with levamisole causing severe neuropathy. He said see some one about it.WHOM do I see?  See someone about it! WHAT ARE YOU CHOPPED LIVER!  I haven't seen him since. I mentioned levamisole to my nephrologist. He asked if I had been on it and how much I had taken. He said that levamisole was a very interisting drug and not very nice. He credits my autoimmune conditions to levamisole and my tpe two diabetes to prednisone. I asked how he could be sure of those observations. He justed laughed and said by autopsy..I have a very good skin cancer doctor, heavy duty immuno suppressants cause skin cancer. I see him every six months there is always something to remove.  Most of the chemo agents cause sunsensitivity and it is another area where you need to remain vigilent.   Surviving survival is not easy , once you are in the zone you can never let your guard down. The farther you get from your original cancer , the closer you get to your next one. best wishes to all of you survivors, stay well, Hugs Ron.

Good to hear from you !!!. Seems like high blood pressure and heart failure go along with our cancer as i have both . Just passed my 13th year from my original colon dx. It has not been easy but you keep pushing on, I have been having a hard time lately. I have been doing alot of thinking(not so good). But I am here by the good grace of the Lord. Take care Ron!!!

kmygil said:

Survival

I am a 10 and 11 year survivor of two cancers, both from HNPCC (Lynch Syndrome) which causes colon and a slew of other adenocarcinomas.  Survival means so much more than simply continuing to breathe.  Survival means dealing with the long-term and often permanent effects of treatment.  Survival means adapting to your new normal.  Survival (for me) means accepting new limitations, not because of the cancers, but because the treatment effects combined with pre-cancer conditions have made certain things undoable.  Survival means accepting that once you no longer have health insurance through your job, no one will touch you in any way that's affordable when you're on a limited, fixed income, so you sort of go along without health insurance never knowing if a recurrance is happening, since you can't get your checkups.  But here's the thing.  I decided to just enjoy what I have, try not to stress about what I can't control, love my dogs, and realize that I won't live forever.  Yes, I have an exit plan if I do, indeed, get sick again.  But it's just there in case.  Right now, I'm just savoring my life.  What tomorrow brings will happen tomorrow.  Today is beautiful.

kmygil  You are so right about everything you said.  I love your uplifting and positive feedback.  I am a recent anal cancer survivor (3-1/2 years NED) and I concur with your acceptance of life as it is.  Survival for my condition and lifestyle begins in the mind and I try to stay on top of it.

But I'm not here for me.  I'm here for my sister-cousin who was very recently diagnosed by her Vascular surgeon with signet-ring cell adenocarcinoma of the rectum.  He told her this type cancer is fast spreading, incurable, and gave her from 1 to 3 years to live.  She has an appointment this Wednesday with an Oncologist and I'm so hoping something can be done to help her.  She was also recently diagnosed with an abdominal aortic aneurism.  So there is that to contend with if she is eligible for cancer surgery and HIPEC.

I feel like I am walking around holding my breath for her, waiting for whatever the inevitable will bring.  Prayer and hope is all we have, along with the love and support from this forum and close family members.  The survival stories I've been reading here, from gallant cancer survivors, have really helped me to help her.  She is not in a survivor-frame-of-reference right now and doesn't visit CSN.  She is more in disbelief and that is understandable.  I'll return after Wednesday to report what her cancer doctors have to say about her prognosis.  Thank you for allowing me to vent my concern for a family member I love.

Note:  I forgot to mention that my father died from colon cancer in 1979.  We believe the problem may have stemmed from his service in the Navy.  He was on destroyers and traveled the globe.  Somewhere along the line, he ate candy that was laced with glass and this lead to dad having part of his colon removed while he was in the service.  I don't remember all the details.

I looked up Lynch Syndrome.  My father is the only family member with colon cancer.  But me and my older sister both have endured treatment for anal cancer.  And now our cousin has rectal cancer.  Our cousin is the same paternal DNA.  We share the same grandfather but different grandmothers, yet our grandmothers were full blooded sisters.  In short, my dad's mother died young and grandpa married the younger sister.  Thus my cousin's father and my father are half-brothers.

Colon & rectal cancers fall under the heading of colorectal cancer: anal does not.  My sister and I have had regular colonoscopies for many years.  I've had four in 20 years and three anoscopies in about 3-1/2 years.  Our cousin only recently had an anoscopy but never a colonoscopy.  I'm wondering ... if she had gone through a colonoscopy, say ... five years ago ... would the ring-cell cancer have been found early?   Also, why don't doctors regularly test people with family histories of cancer?  What ever happened to prevention intervention?  The scientists need to come up with something better for early intervention of signet-ring cell.

Also for those who have been diagnosed with cancer, it's my understanding that a PET/CT scan does not always pick up the sheets of signet-ring cells.  There is another type of test that does but I don't know the name of it.  If anybody does know, would you please tell me?  I want to learn more about it.  Thank you.

I'm still under the care of my Hematologist and see him every six months.  So far all my blood work looks good.  Knowing my family history of cancer, I am curious why my doctor never mentioned Lynch Syndrome to me.  I will have a lot to talk to him about in August.

Hugs and many blessings to All from Above,

Carol