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New cancer diagnosis

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Hi All,

It's been awhile since I've posted here. My year has had a lot of changes for me. I had my usual CT scan back in early March. I had an "all clear" from my oncologist (I had stage 2, grade 3 cRCC back in 2010, with a 9cm tumor and left kidney removed). Two days after my appointment, he called me to tell me his missed the note about my sigmoid colon having wall thickening. He called my GP to schedule a colonoscopy asap. As I just turned 50 last year, this was my first colonoscopy.  Then I lost my job. And my insurance. So I had to postpone my appointment until I was able to get on AFA insurance, which I did by the deadline.

 

I had my colonoscopy on Tuesday, May 6, the prep wasn't fun but the colonoscopy wasn't all bad. Of course I asked to be pretty looped out, and was awake when they found the very large polyp, remember some bad cramping pain and then lights out for me. After, I went out for a celebratory omelet and then home. I woke up the next morning with severe abdominal cramping, that lead to chills by early afternoon. I was wrapped in a down comforter and a coat and couldn't stop my teeth from chattering. 

I called my GI doc's office to leave a message, and a few hours later my DIL called as well. Call back at 5pm telling me to take Gasx.

Thursday I still had a lot of pain but no fever. I called my GP's office at the urging of friends and was told to go to ER right away. I was there for seven hours with a CT, xrays, blood and urine. I was told I was fine and sent home. I was starving as I hadn't eaten much all week, so I got a sub on my way home. Big mistake. I was instantly very sick again with severe stomach pain.

Friday I spent most of the day in bed in pain and ran a low fever all day of about 101. I am fortunate that my doc is open seven days a week so I made an appointment for Saturday. They told me I had diverticulitis and put me on Cipro and Flagyl. That afternoon, I had the chills again and then a fever of 103.4. Sunday I also ran a fever and abdominal pain but Sunday night I started feeling better. I had something to eat for dinner and paid for it again the next day so I skipped food on Monday, Tuesday and Wednesday. Wednesday I had the worst pain yet, started to vomit and called my son to take me to the ER. I was in agony and waited over an hour to get anything for pain, which wasn't enough, and waited another hour to get something strong enough to cut through most of the pain. I was then sent home, and given a prescription for Norco, which I already had at home, and wasn't working. While I was in the ER, my GI doc called to tell me he wanted me in his office Friday morning to discuss the path report.

We discussed the path report and my illness, he looked at the CT again and noted a bubble at the biopsy site. He sent me in for another CT on Friday afternoon as he was worried my colon had abcessed. I have a very early stage colon cancer. Ugh. At least it was caught pretty early. I may have to have my colon resected. I didn't even think to ask for the path report as I was feeling so poorly. I still haven't heard anything about my CT but I figure no news is good news. Did I mention I've lost 16 pounds from this ordeal? Not the diet plan I'd like to follow as it's a painful one! Just a friendly reminder to be diligent about your health. If you haven't had a colonoscopy yet, and you are 50 or older, make sure you get it done. 

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Rae.Rae,

 

Colon Cancer is like Kidney Cancer. If caugjt early everything will be OK. My mother had Colon Cancer surgery in about 1973 at age 52. She survived 41 years until a few months ago when she died of other causes. Becayse of this I have had colonoscopys every 5 years since age 35 or 40. Recently the last 2 have shown pre-cancerous polups and I now have a Colonoscopy every 3 years. So far I have had no issues with the aftermath other than the licquid plumer prep.

 

Hopefully your issue is just a little bug or something. What you went thru is the exception rather than the ruke and all others shoukd get screened.

 

Icemantoo

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Sorry to hear your news Rae Rae, but thank goodness it was caught in time. I always have regular colonoscopies as like you I had early stage bowel cancer. Many years ago now thank goodness! I have had pre cancerous polyps removed since, so I am thankful for the check ups.

I hope all goes well with your CT results, and the diverticulitis calms down quickly, it's a very painful thing to suffer from. I assume they have told you to stay away from nuts and seeds, tomatoes and spicy foods etc. Allowing for the inflammation to calm down and the pockets to heal.  Let us know how you get on:)

 

Djinnie x

Jan4you's picture
Jan4you
Posts: 184
Joined: Oct 2013

Wow, I am so sorry for all you are going through..enough!

I wonder about your GI doc. Seems things were missed eh?

And I was surprised that they didn't admit you to hospital.

After all, you have cancer already!!

 

Hope all goes well from here on out.

Let us know how you are doing. We care!

Warmly, Jan

foxhd's picture
foxhd
Posts: 1900
Joined: Oct 2011

At least I'm glad you caught it early.  I'm not surprised that you've lost weight. You'll lose more. I'm sure you've got good doctors. So you'll do well Rae-Rae.

I am alive
Posts: 220
Joined: Jul 2012

Whew. What an ordeal. But a blessing really. My father-in-law caught early stage colon cancer 20-plus years ago, had a resection and some complications that kept him in the hospital for almost a month. But once he got out, he never looked back. He recently turned 86 and is still motoring around quite happily. Lucky you for having caught it early!

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

I had the kidney ca in aug 2012 and last july 2013 i had my regular colonoscopy done that I have every 3 years due to I usually have the adenoma polyps as least 2 every time im scoped, and this time in less than 3 years  doc took out six polyps 2 was stage 1 colon ca and other 4 adenomas.  He went deep enough into tissue and removed the cancer and put endoclips in 2 diff places.  Path report was not really to my liking ,   said it appears that all cancer was excised,   i like clear margins myself.  but i have 2 be scoped every year now and my next one is coming up in 2 months.  By doing my reg scopes this ca was caught early and it seems yours is too. And that is wonderful to get it that early.  after the colon ca my pcp sent me to med onc and genetic test done and it is a variant that it could be causing my cancer or may not,  but doc said since i have had 2 of the cancers in the panel of dna  i am most likely positive.  Will be praying for you.  Hang in there, it will get better,  early detection is the cure.

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

Rae:  I'm sorry to hear that.  You've been through so much :(.  the good news is they found it early.  Is there a treatment plan in place?  I like your Dr though.  He seems proactive and caring.

 

I totally understand how you may be feeling.  I've been told twice I have cancer.  And tomorrow I undergo a biopsy for a possible 3rd.  All signs are pointing to Cowden's, as I've had 2 of the diagnostic cancers and the biopsy is for breast masses.  I'm extremely nervous, and as I have a CT the day after, of course I'm convinced it'll be bad.

 

I had an MRI April 28th, and had my results within hours.  You know that's not good news.  They found 5 tumors (2 in left boob, 2 in right, and another in my chest wall).  And thenthere's the pain I'm in.  Constant throbbing ache in right hip and groin, low back, upper arm and flank.  Ugh.  I don't think I can handle more of this. 

 

Anyway, pardon my rambling, thinking good thoughts for you.

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Rain,

You are going through such a tough time yourself, I had never heard of Cowdens before, what sort of treatment will you have? I am sorry you are in so much pain, dealing with all this crap is so hard. I will be praying and thinking of you tomorrow, and Wednesday. All the best!

Djinnie x

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

Thanks Djinnie.  appreciate the support.

 

I don't fit the strict criteria for Cowden's disease, but do for Cowden-like Syndrome.

 

[url[http://ghr.nlm.nih.gov/condition/cowden-syndrome[/url].

 

Getting the genetic testing will be a challenge, but all signs point to it. 

No specific treatments are available for it.  I think it's a matter of Whack-a-Mole.  Im in a head space right now where I don't think I can do this again.  I really really hope my biopsy is benign.  I do not want more surgeries, nor can I handle the idea of chemo or rads.  Ugh.

 

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Rains, 

I couldn't access through your link, but have been reading about the syndrome on other sites. I can understand how hard this is for you, I will be routing for you tomorrow. Do you have someone to go with you?

 

Djinnie x

 

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Wow Rain, so sorry you are going through this. I will keep you in my prayers. I, too, am wondering about genetics in all of this. I was tested for VHL after my kidney cancer diagnosis since my father also had kidney cancer at a relatively younger age. Now it's Lynch Syndrome...as both my father and I had Kidney ca, my mother had uterine ca and now I've been diagnosed with colon cancer. I am going to discuss having genetic testing again, as there are other cancers risks with Lynch syndrome, breast cancer being one of them. It could be a fluke, or not. My GI doc said my family has "bad genes" as my half brother has also had cancer (throat and mouth, not a smoker) in his late forties. 

The colon issues I've had have been a greater concern to me than the actual cancer itself. I am much improved today and even eating some regular foods, though still keeping it on the bland and soft side. It's my last day of antiobiotics and I am a bit fearful of how I will be feeling in a couple of days. This has been no picnic, in fact it was like being sick and in labor for two weeks, with nothing for the pain, I don't know how else to describe the pain (and fear of eating) it causes. But I whole heartedlyb agree with the comments here, that it was a blessing in disguise. Thank goodness for the regular CT scans that caught this. It could have been much worse. God will see me through it, as He always does. I have too many things I plan on doing with my life and an awesome Michigan summer ahead of me. Keep smiling!Laughing

rainsandpours's picture
rainsandpours
Posts: 93
Joined: Apr 2013

No Djinnie, I have no one to go with me.  I've gone to all my appointments the last 2 years alone.  That's another reason I don't want more surgery. I have no help with my kiddo. Recovering from my OPN was no picnic and chasing him made it harder.  I still suffer immense fatigue.  I've spent the last 3 days (long weekend here) in the house, only leaving on Sunday to grocery shop.  Too tired to even get dressed. My poor kid is so bored, and I feel like the worst mom ever, but taking him to the park or whatever is beyond me right now.  I spent all of today resting just so I had energy to fold laundry and vacuum. He's ADHD and autistic, so even more needing of attention and monitoring. 

 

I havent' told anyone except my boss at work about my latest testing.  Im in hibernation mode and not feeling too up to talking about with people.

Jan4you's picture
Jan4you
Posts: 184
Joined: Oct 2013

Well this news is just heartbreaking YOU NEED help!

I also have to go everywhere alone, but at least my kids are grown.

Is there a church or Autistic society that could help out?

I bet if folks knew, they would help. Are you willing to ASK

someone to get help on your behalf?

Not sure how old your child is.. but you are NOT a bad mother.

Guilt is in a mother's DNA I swear!!

 

Sending you hope, love and requests for HELP!!

 

Hugs, Jan

Srashedb
Posts: 180
Joined: Dec 2013

where do you live and why can't you get help with your child? Your fatigue sounds awful and of course, chasing a kid around when you feel like this, impossible.

cancer and surgery must overwhelm you but what choice do you have, really? Hoping for good results tomorrow and will send you positive thoughts.

Sarah

I am alive
Posts: 220
Joined: Jul 2012

Rains ,

  I am so sorry to hear that you are in pain and alone, facing possible new cancer, and have a child to care for. I don't know the age of your child, but if he/she is in school, have you thought of contacting his/her teacher and letting her know what's happening in your home? Perhaps the teacher can arrange a dinner traIn (if that's what you call it) where parents of classmates sign up to deliver a dinner once a week. If 7 parents sign up you've got a week's worth of meals. maybe they do it for a couple of weeks......if 14 parents sign up each would repare a meal once every two weeks, which is really no imposition at all. neighbors and friends did this for my family after one of my surgeries when my daughter was younger and it was a huge help! Most people want to help, they just don't know what to do. Hint: Someone does need to honcho it, though, calling folks and giving assignments, reminding them of their day to deliver.

  Jan4 is right. Is there an Autism association or group near you? Maybe they would help you arrange play dates for your child, or direct you to an autism-specific summer program that your child could participate in. If dropping off and picking up is something you don't feel up to, maybe something can be worked out.

   If relatives ask what they can do for you, tell them they can get together and chip in to hire maid service for you, once every 2-3 weeks. You simply need help keeping up the house and maintaining order for your child.

  Yes, you will have to reach out and ask for help. And you might not get it, which would only add to your frustration and feeling of being overwhelmed. But nothing ventured, nothing gained. I will remember you in my prayers tonight. I hope tomorrow will be a better day for you.

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Hi all, I have a quick update. I had about 10 days off Cipro and Flagyl before I started feeling bad again, fever, chills etc. Back on antibiotics and scheduled to have my colon resected on June 19 due to the inflammation from the maligancy and diverticulitis. This surgery should be a piece of cake compared to my nephrectomy. And it evens out my scars as I am missing them on my right side. 3 - 5 day hospital stay and all is golden. Cool

 

Rae

Phredswife's picture
Phredswife
Posts: 72
Joined: Apr 2014

Good luck Rae rae for the next surgery. Phred is thinking of getting zipper ends tattooed on the ends of his scars. Take careSmile 

Melissa xox

foxhd's picture
foxhd
Posts: 1900
Joined: Oct 2011

Nothing but beauty marks Rae-rae. You'll beat this too.

Jan4you's picture
Jan4you
Posts: 184
Joined: Oct 2013

Oh sweetie, I DO feel for you! Not sure why you have to wait till June 19th is it because of the infection needing to clear up? Or what?

Did you ever get any assistance with your son? Anyone?

Wish I were closer hon~

Gentle hugs, Jan

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

Rae Rae i will be praying for you that all goes well with the resection and you will be up and about in no time.  Take care.

aamdsi
Posts: 144
Joined: Apr 2014

On the up-coming surgery. Hope all is over and done with afterward.  Love you attitude about it as well! You'll be enjoying the summer  in no time

Also live the zipper tattoos idea. 8-)

 

hugs and prayers

APny's picture
APny
Posts: 167
Joined: Mar 2014

Wishing you the best and a very speedy recovery. My husband had his colon resected for diverticulitis about 12 years ago and he's been fine ever since, knock on wood.

Jojo61's picture
Jojo61
Posts: 366
Joined: Oct 2013

Raerae, you must feel you have been through the ringer! I am glad you don't have to wait too much longer for the surgery - and that they caught it early. Will be thinking about you.

And Rainsandpours - you have been through so much as well. I hope everything goes well and is all behind you soon. Thinking about you as well.

Big Hugs,

Jojo

 

 

 

NanaLou
Posts: 69
Joined: Oct 2011

I will be thinking of you on the 19th. Hope all goes well  and it is a piece of cake!! I go for a check up scan on the 18th. Scan gitters haven't set in yet. But,I know they are coming. Always do. Prayers for you!!

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