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aggie0053

aggie0053
Posts: 61
Joined: Mar 2011

dr just called said cancer in nodes in stomach, he said they think it's colon cancer again, going for more test this week. makes me mad i just had a colonoscopy aug 6 last year.

Trubrit's picture
Trubrit
Posts: 1482
Joined: Jan 2013

I've just had some similar news, and it really takes the wind out of your sails.

Heres hoping you can get it all sorted soon. I'm still wating for a call from the Oncology office.

aggie0053
Posts: 61
Joined: Mar 2011

i,m waiting too hope everythings ok

LindaK.
Posts: 320
Joined: Apr 2013

My husband had 2 ft. of his colon removed about 15 months ago and was declared NED in August, 2013.  November started having more pains,  ct scans, x-rays and colonoscopy and showed he was "clear"  January 2014 ended up in ED, large tumor removed from his small intestines. First scan in March showed 2 suspicious lymph nodes, which he just started Folfiri to treat.  We switched treatment centers, much much happier.  We lost faith in former hospital, doctors, oncologist after January hospitalization, misstep after misstep.  Now he's on to feeling better and some hope.  Oh, and he's finally having his first PET scan tomorrow, something I'd been asking for since last summer.  We have a good health insurance policy, so that's not the issue, it was the oncologist who kept putting it off.  I hope you get some answers soon. 

Linda

aggie0053
Posts: 61
Joined: Mar 2011

thank you it just bothers me that they put you on hold, i've never had a pet scan. after colon cancer  in 2010 had 2 foot removed my onc kept taking blood. said everythings ok

Trubrit's picture
Trubrit
Posts: 1482
Joined: Jan 2013

We're fighting with the insurance company to cover the PET Scan that my Onc wants me to have. 

Time is precious, and the insurance companies like playing God. 

LindaK.
Posts: 320
Joined: Apr 2013

I know exactly how you are feeling.  The new place we are going wants their own tests to benchmark his progress.  Former place used imaging and labs that were subcontracted.  I felt if my husband had a PET scan in the fall when he was starting with more pain/issues, they would have found the new tumor much sooner and would have saved him from months of misery.  No one seemed to care there.  If any doctor requests a PET scan, that should be all that is required.  It makes me sad when people have to fight each step of the way.  It's hard enough to deal with cancer....

Linda

aggie0053
Posts: 61
Joined: Mar 2011

i just got a call from my dr;s nurse said to see the oncologist mon, i said ok but he has a 20 page report from the dr who gave me the scope, can;t you tell me something. all she said was if you need another colonoscopy the onc. will tell you, so is it colon she didn't know. it makes me mad that theres a paper that says what i have and i have to wait 5 more days for the results

LindaK.
Posts: 320
Joined: Apr 2013

What kind of scope did you have recently?  Is the doctor's office close to you?  Can you go there today or call them back and tell them you are very anxious about it?  Be truthful with with and tell them you don't want to wait until Monday.  Our last two appointments with our former onc. were very hard to wait for, only to find he wasn't prepared for our visits to review anything.  He had to call the radiologist while we were in a room waiting for him and wait for him to call back (an hour later) to tell him what he thought.  So disappointing.  Maybe you should tell them you want to know now if you'll need another colonoscopy and that you want to make that appt. ASAP and prep for it,  That might speed things up, just some suggestions.  Now we have several people to call or email who will answer you within an hour at the new treatment center.  It is so reassuring to know someone cares and understands our anxiety.  I hope you get some answers soon.

Linda

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

I think most of us think we have no choice but to wait, but sometimes letting them know our preferences for quick communication can get results.  Especially if this isn't your first time at the rodeo, many doctors will respect your wishes.  Not to mention they are your dang medical records!  My doctor started just posting my scan results to my online account, because he knew I didn't want to wait a long time for results, and I'd seen enough of them to have some sense of what I was looking at.

So it wouldn't hurt to let them know how you're feeling about this, aggie!

aggie0053
Posts: 61
Joined: Mar 2011

i had an  endoscopy last thur. said everything normal but 2 lymph nodes in stomach area was enlarged took biopsy, my personal dr found out mon. that they were malignant, the gi hasn't even called, went to his office yesterday he was at the hospital in detroit i live 50 miles north. so today i called the girl on the phone said he had emails from my dr and a 20 page report from the endoscopy, called in afternoon she told me onc will let me know.  i guess if i knew him or family i would know by now. hopefully it's curable but your mind thinks the worst

LindaK.
Posts: 320
Joined: Apr 2013

you're having so much anxiety and not getting any answers.  I would try calling again today, maybe onc will talk to you on the phone and you can still keep your appt. Monday to get more info.  It's tough to hear news (from a 20 page report!) and try to process it all in one appt.  Our GP was talking to my husband about quality vs. quanity of his "time left" before onc. told us anything either - I just want to scream sometimes at the things these doctors say.  Every case is different, so I would not suggest doing too much searching on the web.  If you don't feel your onc. is serving you well, it may be time to look into someone else.  I doubt they would treat their loved ones this way.  I hope you get some answers before the weekend.

Linda

aggie0053
Posts: 61
Joined: Mar 2011

dr just called said colon or pancreatic he's thinking more towards colon, all the testing still not sure

LindaK.
Posts: 320
Joined: Apr 2013

I'm glad you spoke to oncologist and heard some news.  Try not to worry too much and I hope you get more good information on Monday.

Linda

aggie0053
Posts: 61
Joined: Mar 2011

thank you

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

We are more likely to see trouble coming sooner with more frequent blood tests for CEA and inflammation, sometimes CA19-9.  

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