Wheeee!!!! Here I go again!!
Haven't been here much because I have a frozen shoulder and it hurts to mouse and type.
12/2/10 I had an abdominal scan for lower left back pain I'd been having Came out fine. Pain never left but I'm getting older. Last month, I suddenly ballooned up. I gained two sizes in a very short period of tme - all in my belly. I can wear NONE of my clothes and had to go out and buy emergency pants two sizes up from normal. I requested a CA-125.
I saw my onc today, and he is very concerned about the swelling. Along with my HER2 status and the fact that I'd bloated up so quick, and have gained a large percentage of my body weight, he said, was "frightening."
Is it good when an oncologist is frightened? I'm guessing no.
My blood tests came back fine.
He did later say that it's possible that I'm just experencing middle age spread. 
He's right too, I've always been super skinny and wore a 00 at age 52. (I know, I know, don't hate me.) It's time I pack some pounds on. But, the fact that it happened withiin a few weeks is concerning, and tthat is is all in my belly too, not in my pancake butt where I sorely need it.
So, back to scanxiety
If anybody already diagnosed with a recurrence reads this - and your main symptom was bloating, can you share your story with me?
This is the worst part of this disease. Never knowing what is normal or not or when to worry or not. Before cancer, I would have figured I was gaining weight and gone on a diet. Now I think it's serious. I think the fact that I have been in major pain from this shoulder problem for six months s weakening me too. I can't sleep and I'm almost too tired to be logical..
Thx....
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Comments
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So sorry you have to experience this scanxiety. And a frozen shoulder also! Wow - keep hanging in there!
You said the blood tests were fine - does this mean the CA-125, or did he also check your liver enzymes and other blood counts? Does your abdomen seem "bloated" as if there is gas in your colon, or fluid under your skin? What's his plan for the next step? Surely he plans to determine the reason for the sudden change???
Sending you big hugs! You can send me a PM if you'd rather.
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Ann, I'm so sorry to hear you're going through this now.
I don't have experience with this type of thing, so I have no advice. You're right, that type of weight gain in that short amount of time is worrisome. It might be the cancer, it might be something else.
What type of scan was ordered? If it doesn't answer your questions, you might want to see a gastro doc.
Best of luck.
Leah
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So sorry you're going through this! I agree with Leah - maybe see a gastro doc. Any other symptoms like constipation?
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Thanks all I am having a CT. Since I had one in December, it'll act as a baseline.
The main symptom I have is bloating. I have a lower backache today, quite bad but it's not every day. Of course, my frozen shoulder is extremely painful and I have almost no range of motion so the back pain could be positions I sit or sleep to protect the arm.
I am not constipated. I'm a bit gassy, have to pee a lot (but am very thirsty so drink water all the time) and just generally feel unwell. I'm very, very tired. but again, I can't get good rest because of the arm..
There is nothing really that can't be easily explained by aging and lack of motion from my arm.
Or, it could be ovarian cancer/mets. That is the insidious part of this disease - you just never know. I'm two years from dx so entering the time when most relapses happen
I think if my shoulder wasn't so bad I would be okay.
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If you are extremely thirsty, you might want to consider doing some diabetes testing. That can be a sign of diabetes. Good luck to you.
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I just had surgery two weeks ago for frozen shoulder and can feel your pain and fatigue. I couldn't think straight or sleep either. Everyday I woke up in shaking pain and exhausted. If you don't feel better soon, consider surgery. I am a new person! The doctor told me that had I not had the surgery, I probably would have been in pain for another year and quite possibly it might have even gotten worse to the point that I could have permanently lost some of my range of motion. I am little too and had shoulder surgery several years ago on my other shoulder. I wonder if being petite makes us more prone to shoulder problems. I hope you get to the bottom of your other issues and hope that the frozen shoulder turns out to be the worst of them. My motto is " as long as it can be fixed is good enough for me!". Good luck. My thoughts and prayers are with you!
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Bloating can be a symptom of ovary cancer. Don't mean to scare you but I would definitely want to rule this out, it can be difficult to diagnos. Hope you can get some answers. NJ
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I have a frozen shoulder too!! It is the opposite side of my mx and TE. It has been going on about 3 months now and my orthopedic dr. just now has me starting physical therapy. I am so tired all the time because I'm not sleeping. My physical therapist told me she attended a seminar recently that was about why frozen shoulder is so common among women ages 40-60. She was told that a sudden change in hormones can trigger the shoulder issue- WOW- that not only fits our ages, but chemo induced menopause as well!
Voracious-may I ask what the surgery you had entailed?
Cool Breeze- I hope you get to the bottom of the swelling soon and get some relief. What does your dr. have to say about the shoulder?
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Tifj... Hmmm, I didn't have chemo but I am doing lupron. I am 54. I first had an axillary chord, entrapment and then the frozen shoulder stepped in. Had an MRI in december which also showed small rotator cuff tear and a major pocket of bursitis. The doctor wanted to do surgery sooner but I was skittish about doing it because my previous shoulder surgery wasn't a picnic. I finally gave in two weeks ago and the difference in the surgery from five years ago is extraordinary. Same doctor. Only difference was that he put a pain pump catheter in my shoulder for two days because I can't tolerate pain meds. On the third day, I slept like a baby and today I could stretch my arms so much, I could be a boxer or a cheerleader. A miracle.
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When is the CT scheduled? The waiting is hard, but you'll feel better to know the results in comparison to December. If this doesn't reveal any answers, at least some things are ruled out, and your doctor can order other tests from there! You might try decreasing your salt intake to see if that helps.......
Hope you are feeling a little better this evening.
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The story about my shoulder is a pretty long one. You can read it on my blog if you want. http://www.butdoctorihatepink.com For those who don't want to, basically the shoulder started hurting right after exchange surgery Nov. At my 2 week follow up, I asked my Ps about it and he said if it didn't go away, he'd refer me to PT. A couple weeks later I called him, he did, and I went. They dx'd it as impingement syndrom and put on tens units and other useless things. I went twice but the pain was so bad I asked to see an orthopedist. I saw him, he saw a spot on my humerous (had an MRI for that, was nothing) Then an arthrogram MRI. He didn't see much but said I had a SLAP tear, but it was not inconsistant with my age. He said he'd do surgery but said I could try PT again. I did, went to a different guy. This one took one look at me and said "frozen shoulder" and he wouldn't do PT on it as it was in the freezing stage and that would make the adhesions worse. I've been living with this incredible pain ever since.
Yesterday, I saw my onc and he said that I needed to go back because he thought it wouldn't heal without surgery. So, I'll make an appointment.
And, I know the symptoms could be ovarian cancer. My onc told me he was frightened of it. But, it also could not be. I have a CT on Monday and he said he'd call if the results were bad, and if I didn't hear, "no news is good news."
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Praying for you ANN:)
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Your symptoms of frozen shoulder sound exactly like mine! From what I read, I don't think I ever got out of the "freezing" stage. It said, once you reach the "frozen" stage, the pain subsides but the stiffness is the worst. They tried PT on me, but all it did was bring me to tears and I'm very stoic. When the doctor did the surgery, he said the scar tissue extended from the 4 o'clock position, all the way up to the 11 o'clock position and from the 11 o'clock to the 2 o'clock position, the joint was filled with bursitis. I don't recall where the small rotator cuff tear was...but he fixed that too. So the only part of my arm joint that wasn't problematic was from the 2-4 o'clock position. No wonder I couldn't sleep, AT.ALL. Did I tell you the PT messed up my good arm, that previously had the shoulder surgery? I kept telling them that the PT was hurting my other shoulder and I finally went for an MRI of that arm and found out that I had an AC Joint problem and some new wear and tear in another location and bursitis and tendonosis. Oh, I almost forgot, I had that too in the other shoulder! I had multiple cortisone shots in both shoulders. Anyway, now that the frozen shoulder is better, the other shoulder is feeling somewhat better too.
I hope all goes well with you on Monday and you can get back to worrying about your frozen shoulder instead! Again, good luck and I feel your pain! Really, I do!
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Thanks all. CT is Monday at 10:00. I know they'll send it to my doctor in a day or two. If I don't hear by Friday, I'll assume I'm fine.
And, I made an appointment for Wednesday with the orthopedist about my shoudler. It's been so painful, and I started thinking - I can't put my arm in any position they might want for scans and stuff. It's time to do *something* about it.
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ann, so sorry to hear this. you are in my prayers and thoughts....((((((hugs)))))))
janyce
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I have been having similar issues.
I gave up coffee for Lent and started to gain weight, but not in the normal way. My stomach started to swell up, also developed diarrhea. I mentioned it to my PCP and Onc. (yearly check-up with PCP on Thursday, and Onc the following Tues (Last week) .
As usual, my Onc did NOTHING, even said as I am 3 years out, I must be cured or cancer-free, forgot which term he used. My son, also a cancer survivor, asked about my high cancer markers. Onc response, Not important. Okay, then why the very next morning did he have his nurse call me to inform me they were more elevated and he was ordering a PET CT. (now waiting for scheduling)
Since my DX, I have had non-stop sore throat, hoarseness, laryngitis, (he was not concerned, Bleeding in my bowels, (again not concerned), my PCP sent me to a gastrointestinalist for a colonoscopy and (forgot the name) a similar procedure for the esophagus. Tumors in both places!
I developed a lump about an inch from my original tumor site, again "not important", again my PCP sent me to a dermatologist for removal and biopsy. (Might add that the radiologist suggested the biopsy) After that I developed a lump over my eye tooth, again - not concerned. He actuality said it was a drug reaction - NOPE - another tumor.
Now I have this swelling, sever pain in my spine and hip. My last PET showed "activity" byt again, not concerned. So my PCP picked up the ball he dropped and sent me to an Ortho, Rheumtologist, and neurologist. The Rheumatologsit was very concerned, not his speciality, not arturitist, and feared it BC mets. Was shocked my onc is doing nothing.
My insurance first fought me on a 2nd opinion, then sent me a referral to a GYN who's speciality is fertility. I informed my PCP about this and she requested a different Dr - this time a Oncologist (guess they just looked at the "O''s" and picked the first one. I just received their approval - to my Onc's partner. No way. I am seeing an outside Oncologist not covered by my insurance. I am hoping to see him sometime in the next 2 weeks after my scans are returned.
Please update us on your outcome. You did not post, so can we assume you are OK?
Jean
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Coolbreeze any news???
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Unfortunately, yes. I got a call from my oncologist today, and they found a spot on my liver. I go in Wednesday.
I have no idea what to expect at that appointment.
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crap (((((Breeze)))))!!! Not what we were hoping to hear - this damn disease SUCKS!!!
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It's not what I was expecting either, I'll tell you.
It's going to be a long day tomorrow, wondering what it is. She said "a spot' and not spots, which could be good. Or bad.
She didn't say cyst, and they would probably know what that was.I guess either an MRI or PET will be next, huh? It's odd but for six months, I've had pain on the left side, not the right.
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DARN Breeze. I was hoping, as we all, that it would be good news.
I think the PET is the better of the two. You have to be extremely careful what you eat for a day or 2 before, and nothing for 6-8 hr prior to the scan. Any cancer is thereby hungry and devores the radioactive sugar- glowing on the scans. Not sure how the MRI works, as I can't have them.
Be praying for you, Jean
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Ann I am sorry to hear this news! We were on the Dec 09 chemo board together and of course facebook!
I will be thinking about you..please update as soon as you can after you talk with the doctor
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Thoughts and prayers coming your way. One step at a time, if possible. First you need definite answers. The waiting and testing is not fun by any means, but you can do it! Let us know..... we care!
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Thinking good thoughts and keeping you in my prayers. Veda
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Thinking about you CoolBreeze,
Any word yet?
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My main concern was I had an abdominal CT in December and it was clean. The one in May shows a spot. I think that rules out a lot of benign causes, although I don't really know....do hemangionas and cysts grow that fast?
I see the doctor tomorrow. I'll update you when I do.
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It appears to be mets to the liver.
Can't say definitivly until they do a biopsy, which will be scheduled soon, but the doctor said we have to assume it's cancer until it's ruled out. I have a 2.0 cm lesion on one area and a 3 cm lesion on another - neither were there five months ago. After the biopsy I'l have a PET.
My doctor said if all there is are the two lesions, than I'm "salvagable."
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Cool Breeze, I'm sorry.
Hopefully, the further tests will rule it out. We'll be thinking of you here.
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Cool Breeze-I'm so sorry. That is the news that none of us, especially you(!) wanted to hear.
Praying for a miracle.
Mary
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{Ann}
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