CT done today
I've been having problems since December. I had diarrhea a number of times. I ended up in the ER one night a few days before Christmas. I had several bouts of diarrhea and my heart started beating fast and my BP went up. The ER gave me fluids and I felt a little better, but the diarrhea came back a week or two later. I ended up in my PCP's office for another problem and talked to the doctor about the diarrhea. He thought it was from a viral GI infection that was going around our area, the same thing the ER doctor thought. He had me provide a stool sample for a culture. He wanted it from diarrhea, but, of course, I didn't have any for a little over a week after that, except when I didn't feel it coming on, so I hadn't gotten the "hat" on the toilet to collect it. I finally got the sample. In the meantime, I had a routine 3 mo. check up with my oncologist. I told him what had been going on. My CA-125 was up two points, from 15.4 to 17.4. He told me that he didn't think I had cancer. I commented that I knew diarrhea could "up" the CA-125, and he agreed with that. Eventually, I found out the stool culture was negative. MY PCP told me to wait another week and see if the diarrrhea went away. If not, I should ask for a GI consult. I'd also been offered a GI consult by my oncologist, but I had decided to wait for the culture results first (a mistake). I started feeling worse and worse, getting abdominal pain on the right side of my abdomen, where the cancer had been before. I didn't wait the week. I had my husband tell our PA at the PCP's office that I needed him to order the consult when my husband was going there for his own problems. The PA agreed with my husband that we should use the same doctor who found my cancer the last time (when it wrapped itself around the ascending colon). I knew that gastroenterologist is always booked and his office is slow to call to make appointments. I started wondering when I didn't hear anything in a couple of weeks. The nurse from my PCP's office called with a result from another test. I asked her if she knew if he'd made the referral, but she didn't. He must have forgotten (which is totally out of character for him as he's normally excellent), so she faxed the records over to the GI's office on Tues. and said that office would be contacting me (which they haven't yet). The very next day, I ended up going to the bathroom and finding bright red blood on the toilet paper. I called my PCP, and he got me in within an hour. I figured there was a good chance it could be from hemorrhoids, which I've had previously. I know blood coming from higher up in the abdomen gets dark before it comes out. The PA did a rectal exam and found the blood. He had the nurse schedule me for a CT scan right away, which I had this afternoon.
I had a chiropractor appointment yesterday afternoon, and I discussed it all with my chiropractor, who has very good medical knowledge. I've been seeing him over 35 years. He thought there was a possibility it could be from diverticulitis, and asked me if I'd ever had anything like that. I told him I have had diverticulosis, but never the more serious diverticulitis. I certainly hope its's something like that rather than cancer, but the odds of that being the case probably aren't great. I know I've never felt very sick when I've had cancer the two times I've had it in the past, and this time, I've had some pretty bad days. The day before I bled, I had stabbing pains in the middle of my lower abdomen, about where I figure my bladder should be. I also had pains up near the top of my hip. I still have very bad numbness in my right leg and burning pains going down the inside of that leg. I keep hoping a tumor will be found that can be cut out of there and solve that problem. My GYN/onc. told me when I had my recurrence back in 2017 that the tumor was going into the periosteum of the bone. However, it never went away after surgery. I thought there was a chance that the nerve had been cut during surgery. When the numbness got worse last year, I had a CT scan in July that was negative for cancer. My CA-125 in October at my GYN/onc's office was exactly the same number as it was after surgery, and he, surprisingly, told me he had hopes for the cancer being permanently gone. After my second surgery, he had said I'd be lucky to have 5 more years NED. Note: my GYN/onc. is a different doctor from my oncologist. Both the staff at my GYN/onc's office and my oncologist told me in 2016 and early 2017 that I was within normal limits and had no reason to worry. Two months after my 14.2 CA-125 result that was normal, which was two weeks after my cancer surgery, my result had skyrocketed to 129.2. I was lucky that a hemoccult test had been positive a month and a half before all this, so I'd been sent by my PCP to have a colonoscopy, which found the tumor. zOtherwise, I would have ended up with a bowel obstruction from it. I got rushed into surgery a few days after having both a CT scan and a PET/CT scan a couple of days later. I hope that's not where I'm headed again.
I actually feel a little better today. I've noticed that I get diarrhea after having bread, so I've started avoiding it. My mother had celiac disease, but I've been tested twice before and had a biopsy which came up negative. Not everything I've eaten with wheat in it has caused the diarrhea. I had pasta for three days with no problem.
So now that this test was done on a Friday afternoon, I don't know when the results will be ready. I'm checking the patient portal this weekend to see if anything appears there. Even if the doctor gets the report read (and the radiology office was busy, so he might not), that doesn't mean that a transcriptionist will get the report typed up right away.
For now, no news is good news, I guess. I just play the waiting game.
Another thanks to cmb for bringing up the old threads. It's much appreciated. I might need to refer to some of them.
Comments
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I'm sorry you're still having
I'm sorry you're still having problems. I remember things were acting up over the summer but thought they had settled down; apparently not. The fact is that you had a clear scan in July would, I think bode well that nothing too dramatic has gone astray in the last 6 months. Except for vaginal bleeding, I've never heard of 'our type' of cancer causing fresh blood in the stool or urine, absent any other causes. I do see from Googling diverticulitis that you have most of the symptoms, so I'm going to cross my fingers it's nothing more than that. Please let us know as soon as you hear anything.
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I‘ve got red blood all the time from radiation damage.
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Dear heavens. I'm so sorry.CheeseQueen57 said:I‘ve got red blood all the time from radiation damage.
Dear heavens. I'm so sorry. Glad to know it's not from an active cancer, at least.
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CheeseQueen57
Unfortunately, I didn't have any radiation, so I can't blame the bleeding on that. I think they never did radiation on me because my cancer was so extensive that they'd have to do too big of an area.
I'm anxiously checking the patient portal for my results. I don't know if any of the radiologists who read the scans or transcriptionists work the weekends.
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Hemorrhoidspinky104 said:CheeseQueen57
Unfortunately, I didn't have any radiation, so I can't blame the bleeding on that. I think they never did radiation on me because my cancer was so extensive that they'd have to do too big of an area.
I'm anxiously checking the patient portal for my results. I don't know if any of the radiologists who read the scans or transcriptionists work the weekends.
Hi Pinky, I too have hemorrhoids. They behave themselves most of the time. I also have microscopic colitis, unrelated to my cancer and/or treatment. On the days that the microscopic colitis causes me to have many small bowel movements (which sometimes include loose and/or watery stool) my hemorrhoids are more likely to flare up and I see red blood. I'm hoping this is the case in your situation. Good luck with getting to the bottom of your issues, and I hope your symptoms turn out to have a benign origin and a straightforward, easy solution.
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derMausderMaus said:I'm sorry you're still having
I'm sorry you're still having problems. I remember things were acting up over the summer but thought they had settled down; apparently not. The fact is that you had a clear scan in July would, I think bode well that nothing too dramatic has gone astray in the last 6 months. Except for vaginal bleeding, I've never heard of 'our type' of cancer causing fresh blood in the stool or urine, absent any other causes. I do see from Googling diverticulitis that you have most of the symptoms, so I'm going to cross my fingers it's nothing more than that. Please let us know as soon as you hear anything.
I had bad night sweats last night, something I've had the last two times I had cancer. I never had them when I hit menopause. I had the scan last summer because of the numbness in my right thigh, but nothing showed up. My orthopedic doctor said I had bursitis of my hip in October. I'd complained about 3 different aches to him, and the hip was the one place he didn't x-ray because he didn't want to overdo the radiation. He was able to check the July CT scan report for problems with the hip, and he didn't find any. The hip has been hurting ever since. I got referred to a neurologist for the numbness and was told I was probably wearing my clothes too tight. I ditched the skinny jeans and leggings and bought a whole new loose wardrobe, and that hasn't helped a bit. In fact, it's only gotten worse, moving down my leg, and making my knee feel stiff. I've lost about 8 lbs., which may be from cancer or may be from taking my thyroid pill earlier in the day, before I eat and take other pills. I should have been doing all along. The calcium pill I've been taking in the morning was probably interfering with the Levothyroxine. I also stopped taking the vitamin B6 pill after I read that it can cause nerve problems. Now, I'm realizing there's a possibility that the numbness could have been caused by Levaquin, which I've been taking off and on for years for UTI's. I'm allergic to most everything else. However, it still seems fishy to me that only one leg is affected, and it's on the side where my cancer was in 2017. Sine the cancer was in the periosteum last time and my GYN/onc. couldn't get it all there, that seems a likely place for it to be hiding out, although my scans came up clear after chemo two years ago.
Well, if it is cancer, I've certainly had a long run for a stage IVb patient. Next month will be 9 years from my initial diagnosis, and I'm 8 years and almost 5 mos. from the end of my first chemo in 2010.
Thanks for your reply. You're always so good at keeping up with everyone on here. I'll certainly let you know as soon as the report appears on the patient portal.
I like your new picture.
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MoeKayMoeKay said:Hemorrhoids
Hi Pinky, I too have hemorrhoids. They behave themselves most of the time. I also have microscopic colitis, unrelated to my cancer and/or treatment. On the days that the microscopic colitis causes me to have many small bowel movements (which sometimes include loose and/or watery stool) my hemorrhoids are more likely to flare up and I see red blood. I'm hoping this is the case in your situation. Good luck with getting to the bottom of your issues, and I hope your symptoms turn out to have a benign origin and a straightforward, easy solution.
Colitis is certainly another possiblilty. I think my PA probably was feeling around for the hemorrhoids when he did the rectal exam, but he didn't comment about finding any. That gives me hope for another chance it's not cancer. Thanks for replying.
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cmbcmb said:Hoping for a good report
pinky,
Having tests on a Friday and having to wait over the weekend for the results is always a challenge. I'm keeping my fingers crossed that your symptoms are from something other than a return of cancer.
You're right, it is a challenge. I look at it as another day that I don't know for sure, so I don't have to dread treatment again right away. I hate the hospital where I have to go for my surgery, although it's highly rated. I'd much rather go to one of the local hospitals closer to home. My GYN/onc. doesn't go to them, and there are no GYN/onc's that go to the hospitals I like, unfortunately.
My sister, a nurse, thinks that the imaging center I went to is quick with their reports. I keep checking but haven't found anything yet. Chances are good that there's a limited staff on the weekends.
Thanks for keeping your fingers crossed.
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Another Interesting Coincidence
Pinky, you mentioned above that you've been on and off Levaquin. I cannot prove, but feel strongly nevertheless, that Levaquin caused my microscopic colitis. I was on Levaquin for several months in 2009 when they thought I had bacterial pneumonia. It turned out that I had something called eosinophilic pneumonia (which needs to be treated with steroids), so the Levaquin did absolutely nothing. However, I remember my bowel symptoms developing not too long after my experience with the Levaquin. The microscopic colitis was ultimately diagnosed when my GI doctor did biopsies during my next colonoscopy. If I were you, I would run this by your GI doctor when you get in to see him. The only way microscopic colitis can be diagnosed is by taking biopsies of the colon. Best of luck to you!
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Hoping for a good news
Hi Pinky
Although I am new to this board it is encouraging to read your journey. Hoping and praying that your CT doesn't show any cancer. The waiting is the worst and pray that you can find things you enjoy to occupy your time this weekend until the results are released. Again hoping you hear good news only. xoxo
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Maybe you have developed IBS
Maybe you have developed IBS with diarrhea? I've had it since I was 12 but it was mostly triggered by stress. After chemo it really got bad, some days worse than others. I take Imodium almost every day. I have had upper and lower GI tests, CT scans, FIT test, sigmoidoscopy, and MRI. They can't find anything wrong but yet....there most certainly is something wrong!! It is part of my new normal. It's been well over three years since I have been declared NED but I constantly worry the cancer has come back in my digestive system.
I hope you find the cancer had NOT come back!! Please let us know.
Love,
Eldri
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EZLiving66EZLiving66 said:Maybe you have developed IBS
Maybe you have developed IBS with diarrhea? I've had it since I was 12 but it was mostly triggered by stress. After chemo it really got bad, some days worse than others. I take Imodium almost every day. I have had upper and lower GI tests, CT scans, FIT test, sigmoidoscopy, and MRI. They can't find anything wrong but yet....there most certainly is something wrong!! It is part of my new normal. It's been well over three years since I have been declared NED but I constantly worry the cancer has come back in my digestive system.
I hope you find the cancer had NOT come back!! Please let us know.
Love,
Eldri
I was actually diagnosed with IBS back in the 90's when I had a boss who was majorly stressing me out and a job that I felt had unreasonable productivity requirements. It was at its worst then and got a little better when my boss changed to a more likeable person in the mid 2000's. I used to get diarrhea every day before I went to work. It all went away after my cancer surgery, and I wondered if my cancer had been developing all those years. But now that I know how fast it can grow, I think it probably went away because I retired and didn't have all that job stress anymore. I don't think it's likely to be IBS now as I'm not under pressure anymore. But thanks for the thought!
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Lulu7582Lulu7582 said:Hoping for a good news
Hi Pinky
Although I am new to this board it is encouraging to read your journey. Hoping and praying that your CT doesn't show any cancer. The waiting is the worst and pray that you can find things you enjoy to occupy your time this weekend until the results are released. Again hoping you hear good news only. xoxo
I can definitely use your prayers. I really think they're what saved my life in 2010. My niece, who has a Cricut machine that is used to make homemade cards, got other Cricut owners from as far away as England to send me homemade cards and pray for me. I was amazed that complete strangers were praying for me. One, from England, talked about her "Mum's" experience with cancer. A lot of people that I'd worked with were also praying for me. It was really uplifting to get all the positive sentiments and the beautiful homemade cards, all totally different and very creative. Thank you.
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dear pinky, prayers for an
dear pinky, prayers for an answer. You can make a plan when you get to the bottom of it all.
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Hi Pinky!
Hi Pinky!
It's always good to hear from one of the 'old timers' who were around when I came onboard. Your posts have always educated and/or touched me. It makes me sad that you are now going thru this anxiety AGAIN when you have had more than your fair share of anxiety, fear and heartache. This is one of the reasons I don't visit or post much...reading the struggles many of our ladies face almost makes me feel guilty I got off so easy...
Anyhow, glad to hear from you, but sad to hear of your most recent round of struggles.
I will keep you in prayer. Like you, I truly believe the prayers that went up on my behalf are what got me through. There were just too many coincidences that happened during that time to believe they were anything other than divine intervention.
Hugs!
Kathy
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Hi Pinky, I hope you get
Hi Pinky, I hope you get answers quickly and this becomes something that is "easy" to fix!
Thinking of you today!
Love and Hugs,
Cindi
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Like others, I am hoping for
Like others, I am hoping for good news. I liked the connection MoeKay made about Levaquin intake and your symptoms. If I remember it correctly you also take Metformin, right? Whenever I take it irregularly it causes trouble with my BM even though I have been on Metformin for a year now. Maybe that also explains some of it. But with the night sweats and the pain you are experiencing I am glad you are getting it checked. I hate waiting for the test results to show up on patient portals. Hugs!
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Metformin
I did take the Metformin but stopped. The itching I got with it was just driving me nuts. I know you recommended taking a delayed action formula, but I just wanted to get off of it. The itching has improved greatly, although I still get a little in weird places like in my right auricle. It bothers me most when I go to bed. I have to put Cetaphil skin cream on it, and even sometimes that doesn't stop it. My GYN/onc. told me that in the clinical trials his patients had participated in, Metformin didn't make any difference in this type of cancer. However, I know other people on this board have said otherwise (you included). The itching was just so extreme, I was scratching so hard, I was drawing blood.
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