something's going on- in distress

lisa42
lisa42 Member Posts: 3,625 Member
For the past two weeks I have been feeling terrible. I was ready to go to ER yesterday morning, but I finally got through to my oncology nurse and an urgent referral was put in for a colonoscopy with ultrasound & I had a period of the day where my symptoms went away for a short while. Then my oncologist (who had been out of town on vacation during this time, naturally) finally replied to me by email (I had spoken to the nurse a few times over the past week and a half (which was when I first contacted them about not feeling well) & she was helpful, but not really that much.
By not feeling well I mean that upon waking each morning, I am nauseated and have to instantly run to the bathroom for an explosive bowel movement. Some days it's been diarrhea and other days it's been more solid. Literally, after two or three bites of food, I am racing to the bathroom and barely making it in time. I then feel nauseated, break out in a cold sweat, and then the pain starts. I do have a recurrent rectal tumor 3 cm above the anal sphincter. We have known about this for over a year now, but have not done anything about it because my oncologist does not want to risk more cancer spread by having me go off chemo for the needed time for any procedure or surgery. Even after my insistence and the onc nurse putting in an urgent referral to my HMO for me for an colonoscopy with ultrasound, my onc replies to the email I wrote him a week and a half ago on a Sunday night (before I found out the next day he was on vacation) and he says "It's timely that your upcoming PET/CT is scheduled- this will give us a lot of information. If it's a fistula or an abscess, then that area in the rectum will light up brightly." Well, that's all good and nice, but he ignored the fact that I asked him that I could be examined or given a colonoscopy w/ ultrasound asap and my PET/CT scan is scheduled for July 18th- a month away! His reply to my requesting a colonoscopy or sigmoidoscopy right away was that I need to wait until I've been off the Avastin for 6 wks. Well, tomorrow makes three weeks since I've last had any Avastin. If this were considered an emergency in ER, they'd do it right away without being off Avastin at all, I'd assume, so what does it matter if I've only been off the dang Avastin for 3 weeks?! I need help now- I can't eat more than a few bites a day and spend at least 3 to 4 hours a day writing in rectal pain- burning from raw skin and a throbbing, pulsating pain which radiates out up to my tail bone, to my whole vaginal/pelvic area, and severely out through the left buttock (my tumor is on the left side, so I'm assuming that's why the left buttock hurts). Even after all my description and pleading, he still doesn't seem to realize that I need something done now- today. If I go through another day of being passed off, I will be showing up down at Thornton Hospital (UCSD/Moores Cancer Center)'s ER, where I will insist upon being taken care of.
I'm going to call the PET/CT scan scheduling center in the a.m. and see if I can move my scan date up to this week, since my onc seems to put a lot of stock in that for diagnosis. I'll let you know what happens-

Lisa
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Comments

  • dorookie
    dorookie Member Posts: 1,731 Member
    ohh Lisa
    I am so sorry to hear how horrible you are feeling, I am very surprised at your ONC though, I would think he would at least get you in to his office to see what was going on, do you think your PC might be able to offer some help. What you are describing does not sound normal to me. Even if its like a flu or something, someone should be seeing you.

    Sure hope this gets resolved soon, feel better!! keeping you in my prayers...

    HUGS
    Beth
  • dmdwins
    dmdwins Member Posts: 454 Member
    dorookie said:

    ohh Lisa
    I am so sorry to hear how horrible you are feeling, I am very surprised at your ONC though, I would think he would at least get you in to his office to see what was going on, do you think your PC might be able to offer some help. What you are describing does not sound normal to me. Even if its like a flu or something, someone should be seeing you.

    Sure hope this gets resolved soon, feel better!! keeping you in my prayers...

    HUGS
    Beth

    Sent a prayer up
    Dear Lisa,

    I am sorry you are feeling so lousy. I just sent up a prayer asking that you can be seen asap in order to find out why you are feeling so terrible. Honestly, if you dont hear something soon I would head over to the ER.....sometimes thats what it takes for people to really listen to you to get the emergency care that you need.

    Always in my prayers,
    Dawn
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    Hope for Early Scan & Treatment
    Lisa,
    Prayers for an early scan and something simple to treat. Keep us posted and we will do the prayers for you.
    NB
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    dmdwins said:

    Sent a prayer up
    Dear Lisa,

    I am sorry you are feeling so lousy. I just sent up a prayer asking that you can be seen asap in order to find out why you are feeling so terrible. Honestly, if you dont hear something soon I would head over to the ER.....sometimes thats what it takes for people to really listen to you to get the emergency care that you need.

    Always in my prayers,
    Dawn

    lisa
    i am sorry this has to be happening.sometimes i dont know what is wrong with these doctors.when we see them them face to face they seem very compassionate.but then as time goes on it seem they pass us off to some one else or just tell us to wait.prayers to you my friend....Godbless....johnnybegood
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    My friend
    Left you a message on facebook as well, I will do so here.
    Please, please go to the ER even if it's just for pain management.
    I know what you said yesterday about what worries you going to the ER, but you need to get medication at least for the pain. Not afraid to say this, but you are a Christian as am I, and I've been praying for you as does everyone. And in my heart I honestly believe you should go to the ER. If I lived near you I would have taken you myself. Please don't make me sykpe or call you!
  • KathiM
    KathiM Member Posts: 8,028 Member
    I've got my arms around you....holding you tight....
    I wish I could do more than that, is there anything I CAN help with? Yelling at healthcare personnel is one of my best talents..."You want Aunt Guido rough 'em up, lady?" Seriously, if you can think of a way I can help, I'll be there!!!

    I am not a doctor, but I will say that when I had my rectal tumor, I had to bathroom ALOT, just like you describe. I always thought that it was my body thinking there was something to eliminate (the tumor), so it kept in 'evacuation mode'. And MAJOR pain...even with Vicodin on board. Sigh, I don't understand your onc, though...doesn't he have someone standing in for him? Can you get a script for some major drugs? Like Hydrocondone? I know you don't like to take them...but this is desperate time, and if you were hospitalized, they would be dripping Morphine....

    Please let me know how I can help!!!

    Hugs, Kathi
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    email with onc not getting you care you need, just get it!!
    dear lisa,

    while in so much pain i wish i could help.its possible to tough it out for a short time,
    but youneed excellent care now,i pray you get it.

    hugsand love,
    pete
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Surgeon
    Do you not have a surgeon that you could call. For this type of situation, I'd think I'd be calling my colorectal surgeon rather than my oncologist. I'm still seeing my surgeon, now on a yearly basis, but he is the one that does the colonoscopy and sigmoids. You need to get something done soon and if need be, like you said, go to ER. There is no way you should wait until the 18th and then an appointment to be seen by the oncologist to get results and then for him to decide what to do next. That could be into August by then. You do what you need to do to get you feeling better soon. Sometimes, doctors lose sight of the patient's own feelings. Good luck sweetie. Let us know.

    Kim
  • lisa42
    lisa42 Member Posts: 3,625 Member

    Surgeon
    Do you not have a surgeon that you could call. For this type of situation, I'd think I'd be calling my colorectal surgeon rather than my oncologist. I'm still seeing my surgeon, now on a yearly basis, but he is the one that does the colonoscopy and sigmoids. You need to get something done soon and if need be, like you said, go to ER. There is no way you should wait until the 18th and then an appointment to be seen by the oncologist to get results and then for him to decide what to do next. That could be into August by then. You do what you need to do to get you feeling better soon. Sometimes, doctors lose sight of the patient's own feelings. Good luck sweetie. Let us know.

    Kim

    surgeon-ha!
    Kim,

    I put a call into the surgeon 8 DAYS AGO. Her adm asst has called me back 3 times & again yesterday to apologize for surgeon still not calling me back. Yes, I relayed the urgency & she said surgeon wants to talk to me first before scheduling any appt to examine me- but then she never calls back! Even with the assistant's call and apology about the surgeon still not calling me, she said she'd "send the message again" and that I should hear from her by the end of the day. That was yesterday. Still nada. I am so ticked off that I've been completely ignored. I think I'll be asking for a different surgeon, should I need surgery. There is a new surgeon there who operated on my friend and she loves him- he recently came to UCSD from Sloan Kettering- his name is Dr. Sicklick- funny name.
    I am outraged at how I've been ignored. Maybe my voice doesn't sound urgent enough when I've called- I sure thought it did- I was teary eyed and had a warbly voice from starting to cry- but again, that was just to the assistant- I've not ever actually been able to speak to my onc or to the surgeon yet. It's 7 a.m. now and I'm going to call the PET/CT scan place at 7:30 (I think that's when they open) to see if there's any way I can change my July 18 appt to today or tomorrow at the latest. Maybe if I just go to ER, they'd scan me there. I think if there's not a way they can squeeze me in today, then I'm going to go to the ER.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    lisa42 said:

    surgeon-ha!
    Kim,

    I put a call into the surgeon 8 DAYS AGO. Her adm asst has called me back 3 times & again yesterday to apologize for surgeon still not calling me back. Yes, I relayed the urgency & she said surgeon wants to talk to me first before scheduling any appt to examine me- but then she never calls back! Even with the assistant's call and apology about the surgeon still not calling me, she said she'd "send the message again" and that I should hear from her by the end of the day. That was yesterday. Still nada. I am so ticked off that I've been completely ignored. I think I'll be asking for a different surgeon, should I need surgery. There is a new surgeon there who operated on my friend and she loves him- he recently came to UCSD from Sloan Kettering- his name is Dr. Sicklick- funny name.
    I am outraged at how I've been ignored. Maybe my voice doesn't sound urgent enough when I've called- I sure thought it did- I was teary eyed and had a warbly voice from starting to cry- but again, that was just to the assistant- I've not ever actually been able to speak to my onc or to the surgeon yet. It's 7 a.m. now and I'm going to call the PET/CT scan place at 7:30 (I think that's when they open) to see if there's any way I can change my July 18 appt to today or tomorrow at the latest. Maybe if I just go to ER, they'd scan me there. I think if there's not a way they can squeeze me in today, then I'm going to go to the ER.

    Lisa I would go to the ER,
    Lisa I would go to the ER, hopefully they will set you up for a scan ASAP. Take care Leena
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    smokeyjoe said:

    Lisa I would go to the ER,
    Lisa I would go to the ER, hopefully they will set you up for a scan ASAP. Take care Leena

    Lisa.... Get Help NOW!!!!
    Go to the ER..... They have put this off too long....your body is telling you that. Screw all these people that want you to wait.... Please..Please go now... This IS an emergency at this point. I am very worried about you!

    Jennie
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    lisa42 said:

    surgeon-ha!
    Kim,

    I put a call into the surgeon 8 DAYS AGO. Her adm asst has called me back 3 times & again yesterday to apologize for surgeon still not calling me back. Yes, I relayed the urgency & she said surgeon wants to talk to me first before scheduling any appt to examine me- but then she never calls back! Even with the assistant's call and apology about the surgeon still not calling me, she said she'd "send the message again" and that I should hear from her by the end of the day. That was yesterday. Still nada. I am so ticked off that I've been completely ignored. I think I'll be asking for a different surgeon, should I need surgery. There is a new surgeon there who operated on my friend and she loves him- he recently came to UCSD from Sloan Kettering- his name is Dr. Sicklick- funny name.
    I am outraged at how I've been ignored. Maybe my voice doesn't sound urgent enough when I've called- I sure thought it did- I was teary eyed and had a warbly voice from starting to cry- but again, that was just to the assistant- I've not ever actually been able to speak to my onc or to the surgeon yet. It's 7 a.m. now and I'm going to call the PET/CT scan place at 7:30 (I think that's when they open) to see if there's any way I can change my July 18 appt to today or tomorrow at the latest. Maybe if I just go to ER, they'd scan me there. I think if there's not a way they can squeeze me in today, then I'm going to go to the ER.

    Take Control and Go to the ER
    Lisa,

    Go to the ER. 2 weeks ago I slipped in the shower - my foot went numb and I fell. Hit my head and had a huge contusion size of a grapefruit bleeding at the back of the head. Had a ct scan of head and neck and the Radiologist was in the area reading the days scans so I lucked out brain and neck OK. It has been two weeks and the worst is sore neck and contusion now size of a walnut.

    Hope get that ct scan like I did.

    Praying for a early scan and need for a simple treatment.
    NB
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    Take Control and Go to the ER
    Lisa,

    Go to the ER. 2 weeks ago I slipped in the shower - my foot went numb and I fell. Hit my head and had a huge contusion size of a grapefruit bleeding at the back of the head. Had a ct scan of head and neck and the Radiologist was in the area reading the days scans so I lucked out brain and neck OK. It has been two weeks and the worst is sore neck and contusion now size of a walnut.

    Hope get that ct scan like I did.

    Praying for a early scan and need for a simple treatment.
    NB

    Lisa above you mentioned
    Lisa above you mentioned that your doc. wants to see if it's a fistula or abscess....makes me wonder if he thinks maybe there is an abscess, maybe an abscess that could now be infected and causing these symptoms??
  • Nana b
    Nana b Member Posts: 3,030 Member

    Take Control and Go to the ER
    Lisa,

    Go to the ER. 2 weeks ago I slipped in the shower - my foot went numb and I fell. Hit my head and had a huge contusion size of a grapefruit bleeding at the back of the head. Had a ct scan of head and neck and the Radiologist was in the area reading the days scans so I lucked out brain and neck OK. It has been two weeks and the worst is sore neck and contusion now size of a walnut.

    Hope get that ct scan like I did.

    Praying for a early scan and need for a simple treatment.
    NB

    So Sorry Lisa!!
    Go to the ER. Sometimes timing is everything!
  • Take Control and Go to the ER
    Lisa,

    Go to the ER. 2 weeks ago I slipped in the shower - my foot went numb and I fell. Hit my head and had a huge contusion size of a grapefruit bleeding at the back of the head. Had a ct scan of head and neck and the Radiologist was in the area reading the days scans so I lucked out brain and neck OK. It has been two weeks and the worst is sore neck and contusion now size of a walnut.

    Hope get that ct scan like I did.

    Praying for a early scan and need for a simple treatment.
    NB

    This comment has been removed by the Moderator
  • BettyJoM
    BettyJoM Member Posts: 82
    Lisa
    This is terrible. I think you should go to the ER. If I were in your situation I would certainly go. and call the colorectal surgeon. sorry, your onc sounds like an ****
    wish I could help you
    Betty Jo
  • lisa42
    lisa42 Member Posts: 3,625 Member
    I'm listening... I'm going!
    Thank you for all your kind scoldings to go to ER- I am doing so. Will be leaving within the hour, but it will take some time to get there. I communicate w/ a few csn board members by phone, so I will let one of them know & have them update you, if I end up being admitted and can't report back in here.
    I will be okay- appreciate your prayers- hugs to you all- what would I do without this board?!

    Lisa
  • janie1
    janie1 Member Posts: 753 Member
    lisa42 said:

    I'm listening... I'm going!
    Thank you for all your kind scoldings to go to ER- I am doing so. Will be leaving within the hour, but it will take some time to get there. I communicate w/ a few csn board members by phone, so I will let one of them know & have them update you, if I end up being admitted and can't report back in here.
    I will be okay- appreciate your prayers- hugs to you all- what would I do without this board?!

    Lisa

    Lisa, you're probably on
    Lisa, you're probably on your way to ER - GOOD GIRL! If you have any down time (waiting), can you start some dialogue with Dr. Sicklick's office....get the ball rolling. I would not hesitate. You have a good reference from your friend about him (also, could she help get you in to see him more quickly). References mean everything. I, too, will be praying everyday for you.
  • GaryinUK
    GaryinUK Member Posts: 62
    lisa42 said:

    I'm listening... I'm going!
    Thank you for all your kind scoldings to go to ER- I am doing so. Will be leaving within the hour, but it will take some time to get there. I communicate w/ a few csn board members by phone, so I will let one of them know & have them update you, if I end up being admitted and can't report back in here.
    I will be okay- appreciate your prayers- hugs to you all- what would I do without this board?!

    Lisa

    Wishing you well
    Lisa

    Give them hell, do not be fobbed off, make sure the hospital do what you want and you get answers you need.

    Hope things get sorted and the pain eases soon

    Gary
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    lisa42 said:

    I'm listening... I'm going!
    Thank you for all your kind scoldings to go to ER- I am doing so. Will be leaving within the hour, but it will take some time to get there. I communicate w/ a few csn board members by phone, so I will let one of them know & have them update you, if I end up being admitted and can't report back in here.
    I will be okay- appreciate your prayers- hugs to you all- what would I do without this board?!

    Lisa

    Lisa
    I'm very sorry to hear of all of your troubles. I have gone through some of the bowel issues you describe and it's not fun at all. Just a comment with the Avastin that I'm sure you're aware of, IF surgery is needed for anything, they like to wait 6 weeks since Avastin has blood thinning effects.
    I do wonder if it's time to shop around for someone new. No one should be treated as you've been treated. Hopefully the Doc from SK will be better. ALL of the people I've dealt with there have been top-notch, very professional, and considerate.
    Be well...
    -phil