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advice needed

24

Comments

  • light42day
    light42day Member Posts: 62
    Biopsy

    You've already had to wait quite awhile for test results.  Even 6 weeks can seem like years when you're waiting to hear if it's cancer or not!  I really hope that your doctor will read the reports before he heads off on vacation and let you know something (even through his nurse).  Sometimes it seems like the doctors can be a little insensitive when dealing with test results etc.  I'm not sure they really understand what it's like to wait (unless they've been through it themselves).  I know how your're feeling right now.  I'm coming up on my 18 month CT scan and pap.  You try really hard not to worry and just go on with your life but that's sometimes easier said than done.  I hope and pray that you'll have good news!  Keep the faith and try not to worry (it's hard)

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

    his comment

    he actually said that the samples look fine and i dont believe you have endometrial cancer. can he tell by looking at the sample?? 

    llwright

    What the heck, he's leaving and can't give to you until back in SEPTEMBER????  Now any good doc will NEVER keep a patient in limbo, especially with a cancer diagnosis possibility.  Now when he tells you "I don't believe you have endometrial cancer"....that sounds flippin and not accurate.  My doc has another oncologist practicing in his office, and when he was on vacation for a week, the back-up doc was available to do whatever necessary to keep my docs patients moving and updated on things.  

    Did he tell you when biopsies results would be available?  I do know mine took 2 weeks, but in my case the results were laid on desk to incorrect doc in the practice, so I was longer.  I'd feel very uncomfortable being put on the "waiting list" until docs back in September....just not good practice to make patients wait.  And...if it is cancer, you need to start making plans for possibly surgery, further testing, etc.

    Sorry you're playing the waiting game, as it seems to be part of anything associated with cancer.  Any way to call the doc office and speak to at least the head RN or his assistant, asking about your dilemma and not wanting to wait,.....suggestions to get the results prior to his return in September.

    You're in control so do whatever you can to keep the process moving and not stopping for vacation plans.  

    We're here for you, keep us posted,

    Big cyber hugs,

    Jan

     

     

     

     

  • light42day
    light42day Member Posts: 62

    Biopsy

    You've already had to wait quite awhile for test results.  Even 6 weeks can seem like years when you're waiting to hear if it's cancer or not!  I really hope that your doctor will read the reports before he heads off on vacation and let you know something (even through his nurse).  Sometimes it seems like the doctors can be a little insensitive when dealing with test results etc.  I'm not sure they really understand what it's like to wait (unless they've been through it themselves).  I know how your're feeling right now.  I'm coming up on my 18 month CT scan and pap.  You try really hard not to worry and just go on with your life but that's sometimes easier said than done.  I hope and pray that you'll have good news!  Keep the faith and try not to worry (it's hard)

    Biopsy

    It sounds like he did read at least some of the report. It seems positive that the sample looks good anyway.  I think I'd hold onto that for now. I don't know for sure if that means there's no cancer in there but it does sound promising!

  • jazzy1
    jazzy1 Member Posts: 1,379
    Kathy G. said:

    Hi!
    Isn't all this testing

    Hi!

    Isn't all this testing just nerve-wracking?

    I have had to have frequent colonoscopies since my 1st one about 3 years ago. They found a large and small polyp then and they were pre-cancerous. I had to have a 2nd one in 2 years.

    I had that right before my uterine cancer diagnosis and had 5 small new precancerous polyps. So they want me in every 3 months for colonoscopies until I am clear. I missed the 1st 3 month one because of my hysterectomy this past January so I just had it in June. This time 2 small pre-cancerous polyps!

    I go back for another follow-up colonoscopy in September which will coincide with my 3 month uterine cancer check-ups.

    My brother was diagnosed with anal cancer this past March so I will bite the bullet and keep having these tests done.

    It just feels like you 'live' from test to test/check-up to check-up....what alot of the ladies call the 'new norma' after a diagnosis.

    I hope you tests turn out well.

    Continue to keep us posted!

    Kathy

    Kathy

    Yes I do agree all this testing is really quite nerve-wracking....never ends!  Never thought one doc would suggest that many frequent colonoscopies....sorry to read that one as those procedures aren't so much fun during the prep work, but once in and enduring the procedure it's quick.  

    Hubbie has colon cancer which runs in his family and his dad would have his colonoscopy every 2 years and each time they found a few "pre-cancerous" polyps.  As well hubbie had one when he was 50 yrs with NO polyps and goes in for next one in 10 yrs.  Everyone is different.

    I endured a MRI last year due to some pretty painful back issues. ...tried so many alternative which just didn't work.  MRI showed bulging disk which was relieved after a few months with a new chiropractor.  Today on CBS THIS MORNING they spoke with a prominent doc about MRIs and how not always worthwhile.  Finding we have them and find things which aren't related to our pain (sorta like something very minor which really doesn't need treatment).  The majority of us as we age end up with some minor back issues which never truly manifest into pain....and only shown on higher level scans.  Then when found the docs are rushing to our side to do surgery or add another Rx to our mix.  Comes down to the thinking of not everything needs scans as many things aren't life threatening.  But...in my eyes when do we know it's not life threatening or needing treatments?  In my case I tried everything to alleviate my sciatica pain, but had it and knew the MRI would be my best option.  Bingo, in my case it was well worth  my time and money as now don't have that type of pain.

    Guess there comes a point when we have to know our own bodies and realize NO MORE TESTS.  Many people feel more comfortable with all these tests and scans and someone like me, I'm always more hesitant....I probably run more in lines with laze faire type thinking.  Good and bad in both thinking categories, but everyone must do what THEY FEEL IS BEST and consult with a doc we TRUST!!

    Just my 2 cents.....

     

    Jan

     

     

  • Ann55
    Ann55 Member Posts: 48
    jazzy1 said:

    Kathy

    Yes I do agree all this testing is really quite nerve-wracking....never ends!  Never thought one doc would suggest that many frequent colonoscopies....sorry to read that one as those procedures aren't so much fun during the prep work, but once in and enduring the procedure it's quick.  

    Hubbie has colon cancer which runs in his family and his dad would have his colonoscopy every 2 years and each time they found a few "pre-cancerous" polyps.  As well hubbie had one when he was 50 yrs with NO polyps and goes in for next one in 10 yrs.  Everyone is different.

    I endured a MRI last year due to some pretty painful back issues. ...tried so many alternative which just didn't work.  MRI showed bulging disk which was relieved after a few months with a new chiropractor.  Today on CBS THIS MORNING they spoke with a prominent doc about MRIs and how not always worthwhile.  Finding we have them and find things which aren't related to our pain (sorta like something very minor which really doesn't need treatment).  The majority of us as we age end up with some minor back issues which never truly manifest into pain....and only shown on higher level scans.  Then when found the docs are rushing to our side to do surgery or add another Rx to our mix.  Comes down to the thinking of not everything needs scans as many things aren't life threatening.  But...in my eyes when do we know it's not life threatening or needing treatments?  In my case I tried everything to alleviate my sciatica pain, but had it and knew the MRI would be my best option.  Bingo, in my case it was well worth  my time and money as now don't have that type of pain.

    Guess there comes a point when we have to know our own bodies and realize NO MORE TESTS.  Many people feel more comfortable with all these tests and scans and someone like me, I'm always more hesitant....I probably run more in lines with laze faire type thinking.  Good and bad in both thinking categories, but everyone must do what THEY FEEL IS BEST and consult with a doc we TRUST!!

    Just my 2 cents.....

     

    Jan

     

     

    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.

  • jazzy1
    jazzy1 Member Posts: 1,379
    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.

    Ann

    Doc told him since 3 colonoscopies came back each time with NO POLYPS, no need to see doc for another procedure for 10 yrs.  Now in my case with my own cancer and having one colonoscopy with no polyps ... I'm lucky, see doc in 5 years.

    That darn cancer card is always in my face~~~

    Jan

  • llwright
    llwright Member Posts: 31
    no report

    there was no report except the 2 ultrasound reports. he looked at thelittle jar with the sample that he just took out of my uterus and said" it looks fine, i dont think you have cancer".  thats great if he doen't think i do and if he is right i'll be the first one to bring him a box of chocolates. but i honestly felt like he doesn't care to be bothered with it cause he is leaving on holidays. i will call them tomorrow and demand that the results be sent to someone else. he told  me it takes 4 to 6 weeks for resultsn and i think he said that to coinside with his vacation plans

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

    no report

    there was no report except the 2 ultrasound reports. he looked at thelittle jar with the sample that he just took out of my uterus and said" it looks fine, i dont think you have cancer".  thats great if he doen't think i do and if he is right i'll be the first one to bring him a box of chocolates. but i honestly felt like he doesn't care to be bothered with it cause he is leaving on holidays. i will call them tomorrow and demand that the results be sent to someone else. he told  me it takes 4 to 6 weeks for resultsn and i think he said that to coinside with his vacation plans

    Unbelievable

    4 to 6 WEEKS?  Unless you are in a third world country, this makes no sense at all.  Stand your ground.  I can't believe this doctor's  unfeeling attitude.  He eyeballed the specimen and believes everything is ok.  How scientific.  Don't let him get away with treating you like this.  I am a retired RN  and I have never heard of such a thing.

    Are you in Francewhere everything shuts down in August?

  • Kathy G.
    Kathy G. Member Posts: 235 **
    WOW!!!
    I am in shock at your

    WOW!!!

    I am in shock at your doctor's blase attitude! It appears the other members are as well... 

    I had several endometrial biopisies over the years due to extremely heavy perimenopausal bleeding. None took longer than a week to come back. I'd have to agree with Connie's question about being in a 3rd world country. That just sounds so off that you would have to wait that long for the official results.

    Before my diagnosis I was more likely to let things go and hope for the best. NOW, I am more likely to be on top of it and THEM. I don't like all this testing business and Jan makes some very valid points about MRI's, etc. Sometimes I think they add to our worries without being truly capable of being helpful.....they can be more misleading than helpful.

    That being said in the case of my family history with colon cancer and recent uterine cancer diagnosis I will slurp the testing crap every 3 months until I am clear of polyps. Again, like Jan said we all have to pick and choose our journey on an individual basis.

    I'd just want a copy of my results in hand in this case....my 1 cent of advice.

    Kathy

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    Kathy G. said:

    WOW!!!
    I am in shock at your

    WOW!!!

    I am in shock at your doctor's blase attitude! It appears the other members are as well... 

    I had several endometrial biopisies over the years due to extremely heavy perimenopausal bleeding. None took longer than a week to come back. I'd have to agree with Connie's question about being in a 3rd world country. That just sounds so off that you would have to wait that long for the official results.

    Before my diagnosis I was more likely to let things go and hope for the best. NOW, I am more likely to be on top of it and THEM. I don't like all this testing business and Jan makes some very valid points about MRI's, etc. Sometimes I think they add to our worries without being truly capable of being helpful.....they can be more misleading than helpful.

    That being said in the case of my family history with colon cancer and recent uterine cancer diagnosis I will slurp the testing crap every 3 months until I am clear of polyps. Again, like Jan said we all have to pick and choose our journey on an individual basis.

    I'd just want a copy of my results in hand in this case....my 1 cent of advice.

    Kathy

    Ontario, Canada

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

  • 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