My mental state is deteriorating and I can't make the crazy stop

golf_gal

you r not crazy
I was diagnosed with stage 1 rectal cancer in 2008. Had rectal excision. Stage 1, all good. Except, I went through all the panic and anxiety as you. We all have, we understand. I got anti anxiety rx and lunesta for sleep. I waited two months from diagnosis date until excision. So I go every three months for CEA, rectal exams. On my two yr anniversary CEA was 6.7 from .2. PET showed lymph node lit up. So I had a CT guided needle biopsy and it was adeno from original cncer. Luckily my doc India inked biopsied node because they thought it was the para aortic node, but once they got in me, turned out it was sigmoid node. They said they probably wouldn't have found it without the ink. I had three months of folfox6+ avastin for three months. Waited six weeks for surgery, followed by more chemo. In the node they only found dead cancer cells. For me the waiting did a number on me. I agree with the other comment about a walk, and maybe just sit outside and look at the beauty of the birds, plants, etc. Easier said than done. You will get through this. This site was a godsend for me, I was so scared. There are very knowledgeable folks here. I believe in prayer and I pray for all those here and those who have this disease. You hang in there. When do you go to sloan-kettering? I've heard very good things about them. Bless you, and YOU R STRONGER THAN YOU MIGHT THINK.

Helen321

golf_gal said:

you r not crazy
I was diagnosed with stage 1 rectal cancer in 2008. Had rectal excision. Stage 1, all good. Except, I went through all the panic and anxiety as you. We all have, we understand. I got anti anxiety rx and lunesta for sleep. I waited two months from diagnosis date until excision. So I go every three months for CEA, rectal exams. On my two yr anniversary CEA was 6.7 from .2. PET showed lymph node lit up. So I had a CT guided needle biopsy and it was adeno from original cncer. Luckily my doc India inked biopsied node because they thought it was the para aortic node, but once they got in me, turned out it was sigmoid node. They said they probably wouldn't have found it without the ink. I had three months of folfox6+ avastin for three months. Waited six weeks for surgery, followed by more chemo. In the node they only found dead cancer cells. For me the waiting did a number on me. I agree with the other comment about a walk, and maybe just sit outside and look at the beauty of the birds, plants, etc. Easier said than done. You will get through this. This site was a godsend for me, I was so scared. There are very knowledgeable folks here. I believe in prayer and I pray for all those here and those who have this disease. You hang in there. When do you go to sloan-kettering? I've heard very good things about them. Bless you, and YOU R STRONGER THAN YOU MIGHT THINK.

Thanks. Yesterday and today
Thanks. Yesterday and today were better. I got out of the house, kept myself busy. I had only a few moments of the day when I thought this sucks. Tomorrow I find out what the spot on my lymph is. I'm hoping not to panic. It seems to be a home and night time thing. When I'm outside I'm okay. When I'm in the house I go nuts. When it's night time I'm a mess although I actually got 5 hours last night and then napped this morning. I need more knowledge so I can relax. Now that I have this test, Sloan will take me. They couldn't take me until I had all the results from the first surgery including follow up. Then I'll get an appt so hopefully I'll be in there shortly. I wish I knew what I knew now, I would have gone there in the first place. My friend said sometimes they are years ahead of local hospitals. This site is sreat, it made me calm down. Thanks for the encouraging words. I have only 40 more days before I have to have the surgery if I want my disability to continue without losing 5 vacation days so I'll be going in before end of June for the next surgery.

joemetz

questions
Greetings

we all understand your feelings... we've all been there. You'll make it through this, but i encourage you to get your mind and body on the "think and be positive" bandwagon... and off the pitty party bandwagon.

the pitty party happens... but you need to push yourself beyond this.
again, we've all been there and we understand, but I encourage you to live life positively vs. emotionally drained and filled with worry.

okay... as for the health question...
You say it "came back" after 9 weeks. I get that.
but, my real question... Was it ever really GONE?
did you hear the doctors tell you that you were NED (No Evidence of Disease)?

I'm stage 4 since November 2011 and have had 20 weeks of chemo, after the colostomy surgery back in December. I was told that i had a "long year ahead of me".
that doctor wasn't wrong.... it's been a long 6 months and from what i hear, i'm just past half way there. I have a pause in treatments at the end of June for 4 weeks when they plan a "reconnect surgery" for my colon and remove the colostomy bag.

I read all those statistics back when this all begn... like you right now, i really couldn't those stats out of my mind. but, i quickly leanred that most of the studies are truly 5 year studies and they are all 5 years old.

the odds for a stage iv colon cancer is that less than 8% make it five years.
Not good. But, i had to get my mind to focus on being an 8%-er, or being a 92%-er.
well, i choose to be one of those 8%

and, remember... just because one doctor told you that 10% come back and 10% die from this.... does he truly know the 100% off all those that come back end up being the 10% that die??? I bet that is not the case.

anyway... be positive.
share your story and don't believe 100% of what you read out there.

quiz your doctors and seek the answers you're looking for.
and, if you find that you don't like your doctor... get a new one!
a postive doctor who is in the battle WITH you to win this.

you will win!

my best

joe

marbleotis

You are not crazy, just a cancer patient
Helen - you sound like me in the beginnning. I'll give you the quick rundown. July 2011 Pain on left side front and back, got so bad went to ER. Oh kidney stones (wrong), two days later pain came back - scans, more scans, more pain no sleep - I walked around the first floor of my house each night for weeks. My husband found me sleeping on the floor by the bed, where I fell from exhausion. Well a hida scan found a huge gall stone (Yeah), had it removed Dec 2011, but wait only back pain on left side came back with a fury. I was in shock. More scans (and my constant push at the doctors) along with slight anemia prompted a colonscopy - why not I had every other test. So at 49 I was dx with stage 3 colon cancer with 3 nodes. Luckily no other organs were involved. So I had the colon resection, then the cath inserted and I completed 6 of 12 chem treatments so far. This all happenned with pain on the left side (opposite to the gallbladder and ascending colon). I warned the Drs I am weird. They call it referred pain. I had to get all my FMLA and long term disability straight and be sure everything is in place. I am a type A personality - where I am my own worst enemy. So you can see I REALLY understand when you say your head spins. Anyway, you will find great support on the forum and DO NOT google anything about cancer. Stick to the American Cancer Society info. Best of luck - remember you are not dying from cancer, you are living with it. Big difference!

k1

I got the 85-90 percent
I got the 85-90 percent cured speech too after my initial diagnosis and then colon resection operation. What a false sense of security that gave me. Mine came back in my liver in nine months.

k1

Helen321

joemetz said:

questions
Greetings

we all understand your feelings... we've all been there. You'll make it through this, but i encourage you to get your mind and body on the "think and be positive" bandwagon... and off the pitty party bandwagon.

the pitty party happens... but you need to push yourself beyond this.
again, we've all been there and we understand, but I encourage you to live life positively vs. emotionally drained and filled with worry.

okay... as for the health question...
You say it "came back" after 9 weeks. I get that.
but, my real question... Was it ever really GONE?
did you hear the doctors tell you that you were NED (No Evidence of Disease)?

I'm stage 4 since November 2011 and have had 20 weeks of chemo, after the colostomy surgery back in December. I was told that i had a "long year ahead of me".
that doctor wasn't wrong.... it's been a long 6 months and from what i hear, i'm just past half way there. I have a pause in treatments at the end of June for 4 weeks when they plan a "reconnect surgery" for my colon and remove the colostomy bag.

I read all those statistics back when this all begn... like you right now, i really couldn't those stats out of my mind. but, i quickly leanred that most of the studies are truly 5 year studies and they are all 5 years old.

the odds for a stage iv colon cancer is that less than 8% make it five years.
Not good. But, i had to get my mind to focus on being an 8%-er, or being a 92%-er.
well, i choose to be one of those 8%

and, remember... just because one doctor told you that 10% come back and 10% die from this.... does he truly know the 100% off all those that come back end up being the 10% that die??? I bet that is not the case.

anyway... be positive.
share your story and don't believe 100% of what you read out there.

quiz your doctors and seek the answers you're looking for.
and, if you find that you don't like your doctor... get a new one!
a postive doctor who is in the battle WITH you to win this.

you will win!

my best

joe

Not so much pity party as
Not so much pity party as anxiety havoc. I'm okay when I'm awake but when I'm sleeping something is just taking over. I guess underlying fear because I am waking up in severe panic attacks. I go to be thinking okay I'm in a good position, breath, relax and I do and then I wake up every night at 3 and 4 with tingling arms and pain in my chest. I got lepraxo to try to help it. Lepraxo has major panic attack side effects. I will go to the doctor Friday to try to get something else. You're very encouraging joe and I can see how you'll be the 8%. You just have a great heart and easy going spirit and love for life. I have those too but I was in a bad position to start with as I was in the middle of a divorce. Now we're like okay now what. So the mind has to catch up with okay you're not in divorce mode now. Now you have to let all that go and switch to healing mode instead of anger and confusion mode. My mind is still not caught up at night. Daytime I'm doing much better.

Helen321

marbleotis said:

You are not crazy, just a cancer patient
Helen - you sound like me in the beginnning. I'll give you the quick rundown. July 2011 Pain on left side front and back, got so bad went to ER. Oh kidney stones (wrong), two days later pain came back - scans, more scans, more pain no sleep - I walked around the first floor of my house each night for weeks. My husband found me sleeping on the floor by the bed, where I fell from exhausion. Well a hida scan found a huge gall stone (Yeah), had it removed Dec 2011, but wait only back pain on left side came back with a fury. I was in shock. More scans (and my constant push at the doctors) along with slight anemia prompted a colonscopy - why not I had every other test. So at 49 I was dx with stage 3 colon cancer with 3 nodes. Luckily no other organs were involved. So I had the colon resection, then the cath inserted and I completed 6 of 12 chem treatments so far. This all happenned with pain on the left side (opposite to the gallbladder and ascending colon). I warned the Drs I am weird. They call it referred pain. I had to get all my FMLA and long term disability straight and be sure everything is in place. I am a type A personality - where I am my own worst enemy. So you can see I REALLY understand when you say your head spins. Anyway, you will find great support on the forum and DO NOT google anything about cancer. Stick to the American Cancer Society info. Best of luck - remember you are not dying from cancer, you are living with it. Big difference!

Type A personality! Bingo!
Type A personality! Bingo! And for once, I have to let go of control. Now that's hard to do! I did it first surgery, let myself be a patient. Just have to get the sleep part down.

Phil64

ron50 said:

G'day Helen
I'm not one to give advice on how to survive but I can tell you how I felt at the same phase as you are in now and how I handled it. For a start I did not have the option of having a scope ,I asked for one but was told "ÿou are just too fat ,lose weight and you will be fine....can you just do a scope...what didn't you understand about too fat?"
Next doc told me I had a loose loop of bowel ,come back in three mos. I went back in three weeks and spat the dummy. He scheduled a scope to shut me up. Had the scope ,the GI could not get it past the CA. I was at risk of stricture and rupture. Learned my first lessen. My life ,my body I knew I had aproblem ,make noise ,get action. Don't assume that all docs care ,they are working for a living.
Was operated on the next evening after my scope. Only a moderate sized tumour but very aggressive . Into six regional lymph nodes. I was cut from sternum to groin. I asked the surgeon what he thought. Too aggressive too many nodes ,you won't make it. Wellyou know it's far easier to die,really! dying is easy..living is hard.. For some reasonn I knew ca would not kill me if I didn't let it. So I fought for my life. Did 48 sessions of chemo over a year. Was offered the option of stopping several times as I was so ill with it. Nope no way I'd chosen to live ,just shut up and keep poisoning me.
I went back to work around the second month of chemo. Everyone around me thought I was dying ,it was my secret that I wasn't.
Well that all happened in Jan 1998. I have had the indignity of a million scopes(well it seems that way) more scans than can be healthy and a lot of nasty little problems that have tried to kill me. BUT none of them were ca I have had no sign of a recurrence.
Soooo I continue to survive. Surviving survival is not easy but as I mentioned living is not easy.
Like I said at the start I am not good at giving advice,your body ,your choice .
Whatever you choose I wish you well, Hugs Ron.

Thank you for your post!
Ron, thanks for your post. I admire your perseverance and determination!

Helen, I am at a similar stage in this ugly disease. I've lived 47 years in fairly good health. I did go to the doctors on occasions; for things like cleaning a wax-filled ear or getting a tetanus shot after stepping on a nail.

On Wednesday, October 26, 2011 (about 6 1/2 months ago) I noticed a lump on my right testicle while washing up after a hot jacuzzi bath.

And so begins a tail spin of craziness, panic, highs and lows....

I ended up with a right orchiectomy just six days later, on 11/1/11. Testicular Cancer, Stage 1. They recommended radiation as an additional safety precaution but I could have chosen to simply do surveillance and not radiation. I chose the radiation - better safe than sorry.

I told the doctors about blood in my stool and about difficulty when having a bowel movement. They said probably just hemorrhoids... I should get a colonoscopy after radiation therapy is completed... Heck, I had CT Scans, surely they would see a tumor if it was there?

First follow-up CT Scan is in February. "You have an abnormality on your right lung." You got to be kidding? Nope, there is a nodule on my right lung, could be cancer. Maybe a secondary cancer... It's too difficult to biopsy so they do a PET scan. GOOD NEWS: No uptake, not consistent with a Seminoma, watch it for now, probably nothing?

Then finally I get the colonoscopy on April 21, 2012. I awake from the colonoscopy to hear that I have colon cancer. Nope, not a metastasis of the testicular, this is a new cancer and I need to get it out!

What did I do wrong? How do I deserve this? I have a 12 year old to take care of! And three kids in college! Damn it!

So, I’m home from work recovering from the resection surgery. And tomorrow I will hear the official staging. Based on the pathology report (tumor invades muscularis propria and 1 of 17 lymph nodes tested positive for cancer) I believe I will be stage 3A at a minimum. But I can't get the lung nodule off my mind... Is this a third cancer? Is this a metastasis of the colon cancer? Maybe it’s nothing, given the PET scan findings of no uptake?

How can the doctors miss the tumor in my Colon? They did two CT Scans and a PET Scan? And I told them about blood in my stool! And about difficulties with bowel movements! Damn it!

AND SO, I AM RESOLED: I may not be able to control the cancer. I may be at the mercy of luck regarding my health care professionals, doctors, etc. But I am IN CONTROL of one thing! How I react / respond to this.
I AM RESOLVED: I want to react to this life challenge intelligently! I want to do everything I can to fight this ugly disease. I want to learn to eat healthy, lose weight, exercise! I want to research the doctors and pick good surgeons and good oncologists! I want to take the best treatments (chemo) that will give me the best odds of survival! I will do everything I can do to beat this disease!!!

I AM RESOLVED: If I can't beat this disease there will NOT be a question about my not trying!

I AM RESOLVED: If I can’t beat this disease, I can STILL CONTROL my reaction / response! Albeit difficult, I can realize that my life is NOT forever. I can contemplate the end of my life. My time on this earth is a gift from God! And EVERYTHING I have is a gift from God! And I can be gracious and Loving and open during the end of my life! I can be encouraging and supportive to my Loved ones. I don’t have to be bitter and angry! I am IN CONTROL of my RESPONSE! I can be a testimonial to God! I can Love up to my very last breath!


God be with you today and everyday!

Phil