Hi,
my mom was diagnosed as stage IIIC in February and had optimal debulking. She finished IP/IV chemo at the end of June. Two weeks ago she was hospitalized for a bowel obstruction - her gyn onc looked at the CT and felt it was probably an adhesion / scar tissue from the surgery. He doesn't think it's a recurrence. My mom has been having a soft diet and eating small amounts since then. She mentioned to me today, that she has some bloating and belching - I am so scared that this is not an adhesion and that this is a recurrence.
I asked her to talk to her doctor about doing a PET scan, but I don't know what else to do. She is feeling well otherwise.
CA125 is not a good marker for my mom.
Does anyone have advice? I'm scared to death!
Thanks as always,
Anne
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So scared about possible recurrence - please help
- By agg22
- Posted October 18, 2009 at 9:00 pm · 13 replies
- In Recurrence
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- By jeaniet
- Posted October 18, 2009 at 9:29 pm
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CA 125 is not a good marker for me either. My recurrence was diagnosed by CT and PET. I had no symptoms at the time.
You can sure try for a PET, but sometimes insurance won't cover one, especially if her CT was clear. Mine wouldn't approve the PET without the positive CT first.
I've never had a bowel obstruction, so I am no help there, but I do know that we are full of adhesions from surgery.
It is tough to know what to do, that's for sure.
Jeanie
- By Plonanon
- Posted October 19, 2009 at 9:54 am
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I am no expert on this subject, but I believe that bloating and belching can be a result of a bowel obstruction.
Try this link:
http://www.medicinenet.com/intestinal_gas_belching_bloating_flatulence/arti cle.htm
- By susangolfer
- Posted October 19, 2009 at 6:14 pm
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I'd ask for a CT scan as soon as possible. It could calm any fears of recurrence. Good luck! Susan
- By nana55
- Posted October 19, 2009 at 7:52 pm
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Having gone on this roller coaster ride for the last 30 years,( I was diagnosed at 24, am now 54) I know how you are feeling. You get good news one day and a month later its bad news. I know my stomach gets tied in knots everytime I go to the doctor. You just want everything to go back to normal. My doc gave up on the CA 125, it didn't match my scans. I get CT scans every 3-4 months.
I had intermittent bowel obstructions for years, but no sign of cancer. I had bloating, pain in abdomen and vomiting. I had to have surgery to fix the kink, after that I have had no problem... with that.
In some cases cancer is like a marathon and you have to learn how to live with it over the long haul. But that beats the alternative.
My cancer returned in 1997. I get tired of giving my time and energy to this disease so I try to compartamentalize it to specific days that I am going to the doctor, the rest of the time I try to forget about it. It is not easy by any means. That is how I try to deal with it. I wish you and your mom the best.
- By lovemnms
- Posted October 19, 2009 at 10:26 pm
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I'm scared too about my reoccurance. We are here to help and comfort each other.
- By agg22
- Posted October 19, 2009 at 11:43 pm
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Hi,
Thanks for your replies. We have an appointment on Thursday - I am just praying all the time.
Anne
- By lifeisgrand
- Posted October 21, 2009 at 8:46 am
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I hope your appointment on Thursday will alleviate your fears. It is tough riding the CA125 rollercoaster but I am sure harder still not having that marker to give you some comfort. I was also diagnosed in Feb and finished the chemo at the end of July. Before I even saw my surgeon for my post chemo visit, the nausea and belching had returned. He said it wasn't likely a return of the cancer because of a clean CT and stable CA125. So then I felt better. Two weeks later I saw my oncologist and my CA125 had jumped to where it was after my first dose of chemo. So then I was nervous and scared again. A month later my CA125 was back down again. I "think" that is good news and am once again feeling better about the future. But of course that can change every day with news of lab report and physical symptoms. I still have the GI symptoms and am starting to believe it is something we just live with. I hope (and pray) it is the same for your mom and that after seeing the doctor she (and you) can relax again for a little while and not worry about every little thing. God bless. I will be thinking of you and praying that all will turn out well.
- By loveoneanother
- Posted October 21, 2009 at 2:07 pm
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Hi Anne you haven't mentioned if your mom is taking anything for heart burn. I have bloating but have not had a bowel obstructon . I also belch and especially if i have forgotten to take my omeprezole which i take daily at 20 mgs. It is prescriped by the doc. Its mild and not as harsh as other stomach meds are. Good Luck to u and ur mom. Paula
- By agg22
- Posted October 23, 2009 at 1:41 am
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Hi Everyone,
Thank you so much for your responses. We went to the doctor today - he was so great, very reassuring. He doubts this is a recurrence. He did mention that sometimes after patients have a small bowel obstruction they can get some bacterial overgrowth that causes bloating and belching even after the obstruction has resolved. He recommended some antibiotics and probiotics. He also is getting an MRI to look at the small bowel, to make sure the obstruction has resolved.
Hopefully insurance will approve this.
What a relief - plus my mom and I had wonderful mother-daughter time on the 2 hour ride to and from the doctor's office :) I actually don't mind the driving cause we have a such good time together!
Thanks so much again,
Anne
- By quacker
- Posted October 23, 2009 at 2:09 am
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If you are not a good CA 125 candidate, there are three other blood tests that can predict a recurrence. They are ferritin, CRP and HCG. Elevated and rising levels of these non-specific markers could be an indication of relapse.
- By lifeisgrand
- Posted October 23, 2009 at 7:49 am
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That's good news. Make sure she tries the probiotics. Especially since she will be taking the antibiotics. I had a miserable episode after antibiotics that the doctors kept assuming was simply the way things go after a bowel resection. I suffered for weeks with cramping and well you don't want to hear the gory details but it was not pretty. Two days of probiotics and I was better. I had to diagnose and treat it myself. Get the pills, what you get in yogurt is not enough.
- By Mom82
- Posted October 23, 2009 at 10:24 am
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Make sure to get a good probitic and to take it at a different time than the antibiotic, like an hour os so away.
- By Angel1955
- Posted October 23, 2009 at 3:16 pm
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Anne,
Don't jump to conclusions, try to stay calm. I also worry sometimes about recurrence, but I try not to dwell on it and instead, keep myself busy with work and projects.
I have started having some issues due to adhesions, which may have to be taken care of with surgery, but I am waiting as long as possible. I understand surgery for adhesions can cause more adhesions, which makes sense. Any abdominal surgery (I have had two) is going to cause scar tissue.
Make your fears known to the doctors and make sure they follow your mom closely. That is all you or any of us can really do. Be an advocate for her and don't be afraid to speak up if you think she isn't getting the care or treatments she needs.
Good luck...stay strong!
Angel
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