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advice needed

2

Comments

  • Sara Zipora
    Sara Zipora Member Posts: 231

    Ontario, Canada

    Linda said earlier in the thread she lives in Canada.  The Canadian health care system is different than the U.S. system. 

    Cavalier attitude!

    Grrrrr!

    Don't know if it is too late now, but could you ask for biopsy slides and get them seen by someone else?

    The Doc usually doesn't make the microscope ready slides the pathology department does.

    Vacation/Holiday or Not they are your property and can at the very least ask a pathologist to look at them.

    My two cents,

    Sara

  • janh_in_ontario
    janh_in_ontario Member Posts: 125
    bipsy in canada

    I had many biopsies prior to jy diagnosis. my dr told me it takes 2 weeks. after jy biopsy that was cancer he called me with the dx in exactly 1 week. I am in canada and as much as dr beila hates for me to say, canadian healthcare is significantly different than the US. I have lived in both countries and feel entitled to my opinion.

    I suggest you call the dr and ask his secretary for an alternate dr to be added to the results list. if u r seekng a gyno, perhaps add your family dr.

    try to take some comfort in his comment about it not looking like cancer. enjoy the summer and try to forget the test. if it is cancer you will need to learn to wait - and more importantly learn to fight for yourself. you will need it.

    hugsjanh

     

     

     

     

     

     

     

     

     

  • Ro10
    Ro10 Member Posts: 1,561
    Ann55 said:

    colonoscopy

    I don't think I've ever heard of someone with a family history of colon cancer not getting another colonoscopy for 10 years after the baseline. I thought after age 50 everyone got one every 5 years routinely.

    I too have colon cancer in my family history

    My mother had colon cancer, cut lived 10 years after her diagnosis of 3-C with no treatment.  My brother died of colon cancer at the age of 54.

    my GI doctor recommends a colonoscopy every two years because of the family history and my uterine cancer.  I am scheduled Tuesday for my next one.  I can hardly wait for the prep.

  • Golov003@gmail.com
    [email protected] Member Posts: 12
    pinky104 said:

    Liver problem

    I had stage IVB uterine cancer with no lymph node involvement three years ago.  My cancer spread to both ovaries, the omentum, and the small intestine without being in the lymph nodes.  My CT scan has consistently shown an abnormality on my liver, but it hasn't changed at all, so they think it's a benign liver cyst.  My cancer was UPSC, which is very aggressive, but I have not had a reoccurrence after surgery and chemo.  I don't want to scare you, but the surgery was much worse than I'd expected, and I was in the hospital 6 days (my gallbladder (full of gallstones) and appendix were also removed) and I had to have a couple of units of blood. My bowels wouldn't work after surgery, but I suspect that was because of the liquid diet and then the inedible food at the hospital I had after it.  I'd been told I was going to have day surgery because of a polyp, but it turned into much more.  My surgeon didn't look at my CT scan results until the day of the surgery!  Anyways, although the going was tough, I'm still here with no evidence of disease.  I'd heard all kinds of bad stuff about chemo, but that wasn't bad at all.  It made me short of breath and I lost my appetite for a little while, but I took meds before my chemo and didn't have any nausea or vomiting.

    I read someone else's posting on here awhile back which said that this cancer spreads laterally across the abdomen.  This seems to fit with what happened to me.

    I had a 15% chance of survival with my late stage cancer, so I'm one of the lucky ones.  I commented about my stage IV cancer to my doctor recently, and he told me he's had plenty of people with stage IV cancer who have survived it.  My doctor is in Albany, NY, which is probably not one of the places you would expect to find such a high success rate.  I'm fortunate I was referred to his practice. 

    Good luck with whatever path you have to take.  I hope it's nothing serious.  But if it is, you can see from my story that there are successes with treatment.

    My mom was just diagnosed

    My mom was just diagnosed with this cancer, the ct showEd peritoneal involvement no obvious ln, liver, spleen pancreas bladder etc involvement, we are all so scared though any advice would be appreciated

     

  • llwright
    llwright Member Posts: 31
    done tests so far

    went for MRI yesterday. all scheduled tests are done now. does anyone know if i should have had bloodwork done? nobody has ever ordered any bloodwork at this point.

  • light42day
    light42day Member Posts: 62
    blood tests

    I don't remember having any blood tests done until I had my pre-op tests before my hysterectomy. I hope you hear something soon!

  • llwright
    llwright Member Posts: 31
    MRI results

    got mri results back today for the spot on my liver. it says : Posterior right lobe liver lesion with atypical imaging features that do not fit in with any classic benign lesion. does not have typical appearance for cyst or classic hemangioma.

    the imaging appearances are unusual. intrahepatic cholangiocarcinoma might have a focal presentation such as this.

    i would suggest a biopsy for definative diagnoses. surgical consultation is suggested.

    i also got a call from colonoscopy doctor today. results from polyps are in and he wants to talk to me tomorro at 4.

  • jazzy1
    jazzy1 Member Posts: 1,379
    llwright said:

    MRI results

    got mri results back today for the spot on my liver. it says : Posterior right lobe liver lesion with atypical imaging features that do not fit in with any classic benign lesion. does not have typical appearance for cyst or classic hemangioma.

    the imaging appearances are unusual. intrahepatic cholangiocarcinoma might have a focal presentation such as this.

    i would suggest a biopsy for definative diagnoses. surgical consultation is suggested.

    i also got a call from colonoscopy doctor today. results from polyps are in and he wants to talk to me tomorro at 4.

    Well???

    Now where does that leave you..still unknowns from what I'm reading.  Looks like they need additional testing, etc for the MRI results.  I had my first CT scan after completion of treatments, found something on my liver.  Came back with "hemangioma" and it's on every scan and notes no changes.  Do you have a plan where to go for the consulation or is your present doc doing this part?

    Keep us posted on your colonoscopy results as well.  Anything we can answer for you or help, plse post.

    Best to you and be strong this part of the waiting is the PITTS!!!

    Jan

     

     

     

  • llwright
    llwright Member Posts: 31

    my doctors office is arranging  for me to consult with a liver surgeon for a biopsy. and since the colonoscopy doc refused to give me my results over the phone, even at my urging. im suspeccting its not good news.  yes  i am getting sick of all this waiting. gives me a headache....lol

  • llwright
    llwright Member Posts: 31

    my doctors office is arranging  for me to consult with a liver surgeon for a biopsy. and since the colonoscopy doc refused to give me my results over the phone, even at my urging. im suspeccting its not good news.  yes  i am getting sick of all this waiting. gives me a headache....lol

  • Double Whammy
    Double Whammy Member Posts: 2,832
    llwright said:

    my doctors office is arranging  for me to consult with a liver surgeon for a biopsy. and since the colonoscopy doc refused to give me my results over the phone, even at my urging. im suspeccting its not good news.  yes  i am getting sick of all this waiting. gives me a headache....lol

    Wow

    You're really going through some scary things!  I hope you can get results of endo biopsy sooner than Sept. and liver biopsy turns out ok.  My experience has been that "they" don't take these things as urgently as we do.  Maybe in most cases, the outcome will be the same within a certain timeframe, but they have to know their patients are beside themselves with anxiety while waiting.  Frankly, I don't think they even think about us unless something is in their face (a test result or appontment) and if an appointment, they don't even review our records until just before they step in the door of the room (or sometimes after they enter the room).   I do think there is that there can be a visual appearance on the biopsy samples IF it's an obvious cancer.  At my biopsy, she took extra samples because they didn't look right.  That, however, does NOT replace a microscopic exam and some of us had biopsies that showed only atypical hyperplasia but ended up with a cancer diagnosis after surgery.   

    Adding my encouragement and support to you through the waiting game. 

    Suzanne

  • janh_in_ontario
    janh_in_ontario Member Posts: 125
    llwright said:

    done tests so far

    went for MRI yesterday. all scheduled tests are done now. does anyone know if i should have had bloodwork done? nobody has ever ordered any bloodwork at this point.

    CA125

    I suggest you Demand a CA125 test. you will have to pay $35 but it may be a good cancer marker for you.

  • Kathy G.
    Kathy G. Member Posts: 235 **
    WOW!!!
    As Suzanne says above

    WOW!!!

    As Suzanne says above you are really going through it! I hope you have a good support system while you are waiting for these results. I have always found the waiting is worse than dealing with concrete information...no matter how bad!

    Hopefully your results will be good, but even if they are not once you move through this waiting phase into the 'action' phase with either a sense of direction or the sigh of relief that all is behind you it will be a better place!

    Come back and let us know how you are doing...even if it is to vent!

    Kathy

  • llwright
    llwright Member Posts: 31
    colonoscopy is clear and benign

    got results from colonoscopy and the polyps were benign :) the CT scan and the liver mass says it does not appear as any classic benign lesion so they want to do a biopsy on my liver. i am still waiting on the results for the endometrial biopsy. they have ordered a mammogram and a endoscopy?? to check my stomach. going for mammogram tomorrow and see liver surgeon next week.

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    llwright said:

    colonoscopy is clear and benign

    got results from colonoscopy and the polyps were benign :) the CT scan and the liver mass says it does not appear as any classic benign lesion so they want to do a biopsy on my liver. i am still waiting on the results for the endometrial biopsy. they have ordered a mammogram and a endoscopy?? to check my stomach. going for mammogram tomorrow and see liver surgeon next week.

    That's one down!

    So glad the colonoscopy results are good.  Why on earth couldn't he have said that on the phone instead oif keeping you on pins and needles.

  • llwright
    llwright Member Posts: 31
    OMG is this ever gonna end

    6 months ago i had a lump on my left breast. so doc sent me for a mammogram and ultrasound. It turned out to be a cyst,  A few dyas later i got a call saying i had to go for another mammogram. when i got there it wasnt for a mammogram but for a biopsy on my right breast. i got all freaked out because i had no idea and thought everything was fine. the new radiologist decided to do another mammo and ultrasound because she didnt seem to think that i should need a biopsy. so they re did both and said they couldnt find anything but to come back in six months for mammo to follow up.

    well i went in this past thursday for mammo. now this morning i got a call from the radiologist to come in again because they want to do an ultrsound. so i asked her if my mammo was clear and she said we need to do an ultrasound...so i said again..is this because of the spot in particular from 6 months ago...and again all she said is" we need to do an ultrasound".....uuuggghh  

    i feel like im going to explode. im still waiting on my uterine biopsy results and still have to go for a liver biopsy????

    my god!!!! if i get through all this and i come out clear...im buying a lottery ticket!!!

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    llwright said:

    OMG is this ever gonna end

    6 months ago i had a lump on my left breast. so doc sent me for a mammogram and ultrasound. It turned out to be a cyst,  A few dyas later i got a call saying i had to go for another mammogram. when i got there it wasnt for a mammogram but for a biopsy on my right breast. i got all freaked out because i had no idea and thought everything was fine. the new radiologist decided to do another mammo and ultrasound because she didnt seem to think that i should need a biopsy. so they re did both and said they couldnt find anything but to come back in six months for mammo to follow up.

    well i went in this past thursday for mammo. now this morning i got a call from the radiologist to come in again because they want to do an ultrsound. so i asked her if my mammo was clear and she said we need to do an ultrasound...so i said again..is this because of the spot in particular from 6 months ago...and again all she said is" we need to do an ultrasound".....uuuggghh  

    i feel like im going to explode. im still waiting on my uterine biopsy results and still have to go for a liver biopsy????

    my god!!!! if i get through all this and i come out clear...im buying a lottery ticket!!!

    Yikes

    This is such a nightmare.  I feel so awful for you and wish I could give you a big hug.  I guess a cyber hug will have to do.  Are you eating and sleeping ok?  I hate to think what this stress is doing to your poor body.

  • llwright
    llwright Member Posts: 31
    ConnieSW said:

    Yikes

    This is such a nightmare.  I feel so awful for you and wish I could give you a big hug.  I guess a cyber hug will have to do.  Are you eating and sleeping ok?  I hate to think what this stress is doing to your poor body.

    i know

    no kidding connie this has sure been a very trying summer. thanks for the hug :) i dont know what kind of lesson the almighty up there is trying to teach me,   but enough is enough already!!

  • WalkingThePath
    WalkingThePath Member Posts: 1
    llwright said:

    i know

    no kidding connie this has sure been a very trying summer. thanks for the hug :) i dont know what kind of lesson the almighty up there is trying to teach me,   but enough is enough already!!

    you own all your test results!

    I can't believe how much you've been kept waiting! I'm in the USA, but I always make a written request to have my test results (blood work, MRI, UltraSound, PET/CT) faxed to me (we have a home fax machine) as soon as they are in, and if necessary I write that I do not want to wait to talk to the doctor about them before getting them. You can do this written request when you sign in for the tests, as a condition of giving them permission to do the test.

    Most recently I got my PET/CT scan results faxed two days after the test, and well before the doctor called me. I much prefer to read results myself, look things up online, and then go into the conversation educated, with my questions ready, rather than the doctor having all the knowledge and power and I just have to listen, unprepared to ask good questions.

    If I didn't have a fax machine, I'd ask to be phoned and then to come and pick the results up -- but I'm only 10 miles from the hospital where all the tests are done.

    Getting the results mailed would be my last choice, as that can take a long while.

    I just want to encourage everyone to be full owner of your tests results. It's your body!

    Smile

     

  • llwright
    llwright Member Posts: 31
    endo biopsy results

    good news. endo biopsy is b9 all clear!!!!  they've booked liver biopsy for september 23 unless an available time comes up sooner. go for ultrasound on breast this wednesday. Hopefully these good results keep coming.......:)

  • Kaleena
    Kaleena Member Posts: 2,059
    llwright said:

    endo biopsy results

    good news. endo biopsy is b9 all clear!!!!  they've booked liver biopsy for september 23 unless an available time comes up sooner. go for ultrasound on breast this wednesday. Hopefully these good results keep coming.......:)

    Great news!

    Happy for your news!

  • gamborgr
    gamborgr Member Posts: 6
    llwright said:

    endo biopsy results

    good news. endo biopsy is b9 all clear!!!!  they've booked liver biopsy for september 23 unless an available time comes up sooner. go for ultrasound on breast this wednesday. Hopefully these good results keep coming.......:)

    I have been reading your blog

    I have been reading your blog - happy for you - in future be strong asking for your results. God Bless you - you are so strong.

     

  • Kathy G.
    Kathy G. Member Posts: 235 **
    gamborgr said:

    I have been reading your blog

    I have been reading your blog - happy for you - in future be strong asking for your results. God Bless you - you are so strong.

     

    Great news! So glad you have

    Great news! So glad you have been jumping clear of EVERY hurdle that has been thrown your way and are almost to the finish line. One more to go and hopefully all clear!

    Best of luck and keep us posted.

    Kathy

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    Kathy G. said:

    Great news! So glad you have

    Great news! So glad you have been jumping clear of EVERY hurdle that has been thrown your way and are almost to the finish line. One more to go and hopefully all clear!

    Best of luck and keep us posted.

    Kathy

    YES

    way to go.

  • llwright
    llwright Member Posts: 31
    more good news

    did the breast ultrasound this morning (mammo last week)  they said the said suspicious area from 6 months ago has not changed and is still the same. to come back in 6 months to have it checked again.  im going to assume that it is not anything to worry about if it hasnt grown in the past 6 months. so all i got left is liver biopsy on sept. 23. i feel good about it and that it will probably turn out to be nothing much because from what ive read, primary liver cancer is very rare. i also got a new job and am moving back to the country.....yay!!!!

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    llwright said:

    more good news

    did the breast ultrasound this morning (mammo last week)  they said the said suspicious area from 6 months ago has not changed and is still the same. to come back in 6 months to have it checked again.  im going to assume that it is not anything to worry about if it hasnt grown in the past 6 months. so all i got left is liver biopsy on sept. 23. i feel good about it and that it will probably turn out to be nothing much because from what ive read, primary liver cancer is very rare. i also got a new job and am moving back to the country.....yay!!!!

    You are on a roll

    So there's no reason to think it will stop.  Delighted for you.

  • llwright
    llwright Member Posts: 31
    liver biopsy done

    got liver biopsy done yesterday. they said results will take about a week. hoping for good results. hope everyone is doing well. havent been on here for a while. moved up north and dont have internet access yet. hugs!!!!!

  • frodolass
    frodolass Member Posts: 32
    llwright said:

    liver biopsy done

    got liver biopsy done yesterday. they said results will take about a week. hoping for good results. hope everyone is doing well. havent been on here for a while. moved up north and dont have internet access yet. hugs!!!!!

    Liver biopsy

    Hope your results are good! You have the patience of a saint Innocent Best of luck!

    Donna

  • llwright
    llwright Member Posts: 31
    still waiting.....uuuggghhh

    its been 3 weeks since my liver biopsy and they still havent got them. i went to the liver specialist last tuesday. i drove 4 hours to get there just for him to tell me that my results arent in yet?????

    he said they now send the samples away to be done and its obviously not working.

    now its been another week and still nothing.....what a summer !!!

  • llwright
    llwright Member Posts: 31
    not enough specimen
    wow....just heard from doctor. they said they didnt get enough of a liver sample to make a clear diagnoses. now i have to see a surgeon.........hmmm