Full blown panic after CT scan 8/23/23
Hi all.
Well, here I am, barely able to breathe…again. I went to see my oncologist for a lump I found in my upper abdomen-she felt it and said it was in my stomach. I have just been dx with IBS earlier this summer, right after my husband was dx with aggressive prostate cancer. I've been working with a good gastroenterologist at Mayo, but she is 2 hours away, and since I know that anytime you feel a bump, you should get it checked out, I saw my MO. She didn't think it was "anything" (literally backed up poop, which makes sense with IBS) but asked me if I wanted to get it checked out via CT scan. I said yes, of course.
Got the scan done yesterday. MO called me late yesterday and said the scan revealed "inflammation in the ureter, right", and some bladder wall thickening. I said how serious is this and she said, "it could be cancer!" I am not sure I heard much else—and it isn't like her to be alarmist-so immediately since she was paying so much attention to it, I panicked. I have a urologist that I see for overactive bladder (yes, that has been a thing for me since spring this year), and so he scheduled me for a cytoscopy this morning and a urinalysis. I had a urinalysis in May and it was fine. I also had a lab done for the CT and my kidney and creatin, blood levels were all normal. I've had no pain, no UTI symptoms and since I stopped taking the exemestane a month ago my overactive bladder has calmed down (not completely quiet, but better).
I of course am terrified that this is either a recurrence, a new primary or even a separate type of cancer altogether.
I need some calming words, please.
I might add that my MO said a curious thing when I talked to her last night: she actually asked me "who ordered the CT scan?" My mouth dropped open for a second, and I said "you did!". I mean she ordered it less than a month ago.
I don't know what to think. With my other health issues and my husband's cancer dx-and finally, my 13 year old precious baby dog had to be put to sleep a little over two weeks ago and I'm still grieving her desperately (haven't had a day where I didn't cry…yet) I truly don't know how I'm going to cope with any more bad news. I'm a univ. professor and our semester officially begins Monday, too, with all the stress that it brings.
Truly in tears with all this.
Claire in AZ
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Hi Claire,
With all that you have been dealing with I'm so sorry that you have another scare to worry you. You must miss your dog terribly since she was part of your family for so long. Also, you have barely had time to start dealing with your husband's prostate cancer diagnosis. On the positive side, other than some bladder thickening you don't seem to have other symptoms of bladder cancer. Inflammation has many causes and all of this might be related to your overactive bladder/meds. The wait for the cytoscopy and results is nerve wracking but at least your doctors are acting quickly.
While the start of the new semester is always stressful, focusing on that might help distract you. Cry, scream, punch a pillow or do something else that releases frustration. Recite your Camus quote to remind yourself that you are stronger than any adversity that comes your way. Hopefully this will have a good resolution. Cyber hugs for you.
Maggie
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Hi Claire,
I remembered reading this post earlier at work and went on with what I was doing, and never responded. I can only imagine your worry, let alone dealing with your husband's cancer. I am so sorry.
Bumping this up to see how you are doing with starting school again and to see if any answers yet?
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Hi there,
I'm still trying to get in to see a urologist at Mayo..my file is in triage, and once they review they make a decision to accept me or not. I am already a patient at Mayo, so my gastroenterogist there stepped in and referred me as well, so that may help. I just had a colonography there last week (colonscopy was incomplete because I have a "tortuous colon", apparently this isn't that uncommon) but last week's scan showed hydroephroesis and a swollen kidney. I've only had symptoms of urgency and frequency in urination but no pain. I don't know what to think or how it can be treated. The scan also showed fluid around my heart (which wasn't shown on the CT in August) so I need an ECG.The list goes on: every time a scan is done, something else needs to be looked at further which makes me fearful of overtreatment. My gastroenterologist reassured me that scans are not definitive-and that something noted doesn't mean it's really a problem. Two radiologists can look at the same thing and believe different things about it. Anyway ,I've had no symptoms of heart probs either—fitness classes at least 4 times a week and I'm hiking at altitude and long miles at least once a month, plus 02 sats, pulse, and BP are all stellar. So I don't know.
My husband is doing okay with tx, but we are often sad and worried at present. I started teaching the 28th, so I've been quiet on social media for a while.
thanks for reaching out!
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Claire, I am so sorry that you are facing so much right now. You are juggling a lot of issues at the moment, any one of which would be of major concern. I hope you are taking some time for self-care - a massage, a relaxing soak in the tub, curling up with a good book - in the midst of all of this.
It sounds like your gastroenterologist (GE) is giving you good advice (as well as real assistance). It’s always difficult when we are faced with several different issues and don’t know where to begin or even who to consult. Just take things one at a time and you will get through this. Doctors always respond quickly to anything involving the heart so it makes sense that you get an ECG. The fact that you exercise and hike probably means that there is no problem but you need to get that information so you can rule out a heart issue. Then you move on.
Gastric issues always seem to be so complicated. I too have IBS so I understand how difficult is is to get a diagnosis when that area is involved. Interpreting scans just adds additional problems. (Your GE is absolutely right about the lack of consensus among radiologists when reading them.) I recently had an MRI for long-term back pain and both the radiology tech and the radiologist were in a high state of concern after seeing a mass on my spine. They immediately notified my MO (who had ordered the MRI) and mentioned the possibility of cancer numerous times. Even my MO was concerned, referring me to a neurosurgeon. The neurosurgeon identified the mass as a rare, benign growth at a nerve root and removed it three weeks later. It just goes to show that answers can remain elusive until you find the right expert. You may not yet have that expert but it sounds like your GE is committed to helping you find the answers you need.
I wish I could promise you that you have nothing to worry about. But, once we’ve been told we have cancer, we both know that no one can make that promise. I can promise you that medicine can truly accomplish miracles and that there is a doctor who can help you find the reasons for the problems you’re having and a treatment for them. And I further believe that Mayo is exactly the place you need to go. So let your GE help you find the right doctors and schedule the appropriate tests to get the answers you need. Information is power and the sooner you know what is going on, the sooner you can begin treating it. Everyone here has your back and we will all be encouraging and supporting you. Good luck!0 -
Claire, when I was getting a pre-op CT for my lumpectomy five years ago, it caught a growth on my kidney. I got that news at the post-op oncology appointment, and the nurse dragged me down the hall to set up an appointment with a urologist. I had a nephrectomy two months later. That first scan also showed an aortic aneurysm, as have my subsequent scans that I get as part of the kidney cancer follow-up. But my last scan, in June of this year, described, specifically, no aneurysm or other abnormalities in that area. What the what‽ My oncologist has told me in the past that reading scans is very subjective, plus even things like positioning of the patient and how hydrated you are can cause differences from one scan to another. Also, some reading radiologists just focus on the area the scan was ordered for, and others do a complete anatomical checklist. I've also had weird things show up that the oncologist explained as normal wear and tear on our bodies that we don't know about until we start getting scans. I guess scans are more an indication of the possibility of abnormalities, rather than a true diagnostic tool.
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Hi Claire,
It's always worrying when a scan for one thing leads to questions about another. It's good that your doctors are working to get you an appointment with a Mayo urologist. The urinary issues might be more than an AI side effect or this might just be something to keep an eye on. Pericardial effusions can have noncardiac causes. Checking out abnormalities doesn't necessarily mean overtreatment will follow. I'm under surveillance by five different specialists so that problems won't progress unnoticed. After being rushed to the hospital with two life threatening emergencies that could have been prevented if seen on scans (upper GI bleed, trachea 95% blocked by goiter) I think the "incidental" findings that appear can be useful. A comment about coronary artery calcification on a lung CT prompted my PCP to put me on a statin which had never been prescribed despite decades of borderline high cholesterol. My brother had a stroke several months ago so I feel fortunate the radiologist mentioned it.
Fear of the medical unknown can be paralyzing. Strangely, it was being told to get my affairs in order after developing a rare treatment SE (radiation induced pulmonary fibrosis) that helped me accept uncertainty. Further spread of the RIPF and potential worsening of other medical problems are real possibilities but I'm no longer focused on the sword of Damocles that hangs over all of us. I'm grateful for each day I'm here.
Hopefully you will get reassurance that nothing else is seriously wrong or timely treatment if there is a problem. Take care of your mental health, too. If your are like me you probably prioritize doing your job super well, but slack off a bit to have fun with your husband. Let us know how things work out. Virtual hugs for you.
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Thank you everyone, for your logical and thoughtful posts. I did get an appt with Mayo urology Oct 6, which is pretty fast these days given our mostly broken health care system. What I can't stop seeing (on the first CT) was the word "malignancy". It was like a screaming red hobgoblin on the report.
I did see my local urologist right after the scan who tested my urine for abnormal cells, and it was negative, though a small sample. No blood in urine, no UTI either.
I see my GP for an annual check up this week, and I've provided her with updated notes and the scans and asked her talk me off the cliff a bit.
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Hi Claire,
It's great that you got a quick appointment with Mayo urology. Hopefully they will be able to determine what is going on and have a remedy for it.
Those words on radiology reports can be alarming but if there is even the slightest possibility of malignancy doctors would be remiss if they didn't mention it. They also seem to frequently mention the possibility of inflammation or infection. Your urine test showed nothing suspicious so hopefully what appeared on the CT is something that can be easily dealt with or watched.
I hope your GP appointment goes well, too. Hang in there!
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Clare, many of us have been in situations when the word C has been labeled to things that are suspicious but in the end, have not been C.
6 months after letrozole, I developed a nodule on my thyroids. The doctor who performed the biopsy and the pathologist who was in the room and got the sample told me it looked mostly like cancer. Well, the biopsy was analyzed and it wasn't cancer. It was benign and is shrinking slightly. Once we are on the "red" list of C patients, the first thing on the doctors' minds is C.
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Update-just had my annual physical. My GP reviewed my CT scan from last month and the one I had done at Mayo (colongrapy as part of IBS dx). The CT scan recommended a pelvic ultrasound due to some heterogeneous something near or on fallopian tube. The CT read said “due to little peritoneal fat, and multiple loops of bowel”, it was needed. I want off this medical train. Every time I have another test it leads to more tests that apparently lead to more tests. I reached out to my gyno, who gave me a clean checkup in March. I’m so sick and weary of this.
EKG was normal but GP ordered an ECG per Mayo instructions.
All my labs were perfect as well as cholesterol. I should be thankful something is normal.
I just don’t feel safe in my body anymore. I did for so long in spite of the high risk for recurrence. Now I feel like it’s day one of my first suspicion of breast cancer all over.
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Hi Claire,
Another ultrasound? It's terrible that you can't catch a break. I gave up thinking that nothing more would happen just as my active treatment ended. At my one year checkup my breast surgeon's comment after looking at my records was, "You are like a car whose warranty expired and everything breaks down." That about summed up the three hospitalizations, multiple scans/procedures/meds and five new specialists that had been added since my surgery follow up. However, this old jalopy still runs, albeit not quite as well.
It is good that you are getting answers about potential problems before you have symptoms. There is anxiety that comes with each test but the earlier something is caught the more treatable it tends to be. Two and a half years after a callback and several BIRADS 2 mammograms that missed my tumor (hidden by radial scars) an oral surgeon (really!) diagnosed my bc. I guess that's why I'm not worried that something might be found; it's better than having something missed.
Normal blood work is good news. Hopefully all of these concerning findings turn out to be nothing to worry about. Try to focus on the positive things in your life rather than the tests which in one way are insurance for your health. Let us know how it all works out. Hugs for you.
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What's been horrible about all these findings was that I was finally beginning to feel safe in my own body after so many years. Now I don't feel safe in my body anymore, and that was my last haven. We can protect ourselves to a large extend from outside forces, but when our own body is a threat (and in so many ways, it seems, from these latest scans), where do we go to feel safe?
Every threatening word in a scan report or words a doctor says to me makes me feel like I'm going to die soon. This is the world of living with medical PTSD (yes, I'm on Lexapro and see a PTSD psychologist weekly—for 3 years—but these recent "findings" have taken the wheels off my world).
My DH says I "die a thousand deaths" with every doctor visit and scan, lately. He's right.
Claire in AZ
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My GP and gyno are hustling me into a pelvic ultrasound stat. Appt next Thursday. This is what they are keying on:
"Adjacent to the uterus to the left of midline along the left pelvic sidewall there is a heterogeneous enhancing structure from which is believed to emanate the left gonadal vein. Smaller
but similarly enhancing structure right adnexa from which appears to emanate the right gonadal vein. These appear to represent enlarged heterogeneously enhancing ovaries. The patient has very l i t t l e intraperitoneal fat and no oral contrast was administered. This makes differentiation of the structures from normal bowel challenging. Pelvic ultrasound may be helpful. No pelvic lymphadenopathy."I had a colongraphy in lieu of colonscopy earlier this month and the report didn't even mention anything like the above, but they weren't looking particularly at pelvis, though they reported potential fluid around my heart (EKG fine, no symptoms, hiked miles up a mountain recently and nearly ran back down). I have an ECG appt in Oct.
How many ILC'rs, I wonder, have recurrence in ovaries? I know it likes to recur there, or it could be darker, like a new cancer, like ovarian. This could mean that the IBS that I was dx with could actually be ovarian cancer, since the symptoms of IBS and overactive bladder are also symptoms of ov c.
Basically I'm in a really dark place right now. Therapist helps, but I can't see her every day. I am losing a lot of hope, and I can't hear my adult, logical self, which is shocking-I am so good at helping others with my logic and reassurance. It's hard to reassure yourself when I've been doing it for 12 years. I'm also triggered by September, particularly the end of this month. I was dx on the 29th Sept, so anniversaries are hard, and my late husband was dx with his stage IV recurrence end of this month too, and he died 3 months later.
Claire
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I'm so sorry, Claire. I know what it's like to be scared out of your mind from the possibility of cancer. Probably most of us do. I wish I could think of something to say to help you but all I can think of is to take whatever pills they let you take to try and zone out and not think of this too much while you're getting the scans done. I hope the scans are done asap so you know what you're dealing with. The good news is that you physically feed good so whatever it is doesn't appear to be affecting your health currently which means that if you need treatment you'll more than likely respond well. But there still does appear to be a great deal of hope that you don't since from what your scans read no one seems to be quite sure what they're looking at. So it could be normal for you body.
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Hi Claire, It's nerve wracking to have to wait for the appointment even though they prioritized you. Vague is tougher to deal with than a reading that has some certainty to it even if the information is not what you want to hear. Vague makes your mind rush to the worst case scenario. However, vague could be something that is not serious. I agree with kaynotrealname that lack of symptoms is a good sign.
Having this happen in a month that always triggers your PTSD is unfortunate. Do whatever you can that helps. I wish I could wave a magic wand to take away the stress.
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Sending you gentle hugs @claireinaz. Know we are all thinking about you 🤗
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Thanks all. I think what hurts the most are the words they've been using to share information. I am currently drafting an article that I hope to publish about the harm that fear-based, alarmist words chosen by docs can do to our health. Words aren't neutral. They can undermine trust in health care, keep us from getting care by scaring us so much we give up, and bring on general hopelessness. I'm not so afraid of tx as I am about what the next set doctors say to me and how they say it-and am already in somewhat of a "fight" mode, which brings on more anxiety. Anticipatory anxiety is real, and doctors provoke it. Latest incident was my GP in private practice looked at the colongraphy done by Mayo (that didn't report ovary problems) and said, "It (the Mayo scan) probably wasn't a good read." A scan done by a world class hospital wasn't a good read? WTH?'
Claire in AZ
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Hi Claire, You make a good point that alarming words can have a detrimental effect on patients' mental health. Scans indicate potential problems but often don't give a definitive diagnosis. Sometimes there are multiple possible causes for the same finding, some serious and others not so. However, if there is a potentially serious problem a radiologist could be accused of malpractice by not mentioning it. Also, follow up happens more quickly.
When I was in the ER waiting for a hospital bed a portable chest x-ray was done since my oxygen levels were dropping. My lungs looked OK but the radiologist commented that a 2 cm calcification on the left side might be breast or lung cancer and recommended a lateral view. Since I was 6 weeks out from finishing radiation for right breast cancer I was somewhat unnerved. The new resident in the burn surgery unit was not going to order the repeat x-ray since it was irrelevant to the reason for my hospitalization until the attending told her that my outcome would be worse if I was worried and an x-ray was cheap and easy. The spot turned out to be calcified costochondral cartilage but the more thorough x-ray would not have been done without the serious differential diagnoses. Nobody cared that I couldn't walk because of a new baker's cyst behind my knee. They did provide a cane and told me to deal with ortho as an outpatient.
Hopefully your GP could become less of an alarmist and mention the less serious differential diagnoses, too. You might ask him/her to read a draft of your article for an "opinion" to alert them to your feelings. My now retired PCP had the mindset that he was saving an HMO (which the medical center had been 30 years previously) money by not ordering recommended follow up tests or doing anything for obvious problems. This led to ambulance transports and emergency surgeries rather than planned ones, missed diagnoses and worse outcomes. I wasn't allowed to change providers and my nearest alternative was over an hour's drive away so I stuck it out. I walked out of my first appointment with his replacement with four new meds, six scheduled tests and her explanation, "trying to make up for lost time." Having experienced the downside of the alternative I don't mind worst case scenarios. However, since those trigger your PTSD, your GP should change his approach and look out for both your mental and physical health. Good luck with the article and any upcoming appointments.
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Pelvic US tomorrow of my ovaries. Mayo urology visit with NP Friday. I am having the worst anxiety right now—worse than when I was first dx with BC. When I see a text or a phone call reminding me of these appts my stomach jumps into my chest. Seriously. I'm taking Xanax and still feeling near tears and terrified. I talk to my PTSD psychologist weekly. Still almost unable to think about anything but this.
I could be facing 2 potential threats: ovarian cancer or a recurrence in ovaries, and bladder cancer (the initial CT scan read thickening bladder wall and hydronephrosis/ureter. Trace ascites but don't know where. Both are serious from what I've read. The radiologist who wrote the report said due to "UTI" or "malignancy". I can't unsee the "malignancy" that screamed at me the first time I read the report.
I have researched these threats and feel that my life is essentially over-bladder cancer recurs, and recurs, and recurs, and the treatment is awful. Ovarian cancer can be a death sentence. I can't shake the feeling that I'm going to find out I'm headed toward being a sick old woman for the rest of my life.
I miss my dear dog so much. She was so calming to me, like a spirit guide who kept me sane during dark times. Right now-I just feel horrible. How can everything I've been doing to keep myself well-and I mean I never let up-count for nothing? I've been taking bloody exemestane for 11+ years (I took a 2 month break to see if it affected urgent bladder, and it seemed to help a bit, but I am back on it, too scared to go off it). My BMI is 20. I don't smoke, I do yoga and fitness 5 times a week and add in regular hiking at altitude. I eat organically and vegetarian, no fast food, meditate, my work is mostly fulfilling. No other problems except for IBS (which could be ovarian cancer instead), and I'm managing those symptoms well. How can it all feel like it's going sideways on a speeding train all of a sudden?
Claire in AZ
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Hi Claire, You have hit the nail right on its head. No matter how hard we work at staying healthy our medical outcomes are ultimately beyond our control. Doing all the right things gives us a statistical advantage but statistics apply to large populations, not individuals. As an individual who accomplished pretty much all of my goals and successfully pivoted if a setback occurred I found this hard to accept. I finally came to terms with this fact when my pulmonologist's answer to my query as to whether or not I would survive was "Math is magic, medicine is not." It was his way of personalizing the response "I don't know." I did pull through but consequently internalized the understanding that someday I won't. Whatever we do there are things beyond anyone's control.
There is no replacing your spirit guide dog but a different dog might help. With your history of PTSD you might be eligible for a trained emotional support dog. Animals will unconditionally share your worries and sorrows in a way that humans can't. We try to spare people we love from some of our frustrations but keeping bits inside eats away at us.
There is truth in the proverb "A joy shared is doubled, a sorrow shared is halved." All of us here need this support. Even if the news is not what you want to hear don't give up. I occasionally reread Dylan Thomas' "Do Not Go Gentle Into That Good Night" for motivation. I hope your US and Mayo urology visit go well. Let us know the results. I much prefer celebrating with others so hopefully we can do that.
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Claire, I am sorry to hear this. It is easy to say don't borrow the worries but please, don't borrow them until everything is finalized. My theory, if ovarian cancer is caught early, surgery will remove it and you will be okay. I have removed mine. Regarding bladder cancer, it seems 50-50; until the final results are in, you can't tell. We all as cancer patients have gone through false alarms.
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Claire, I'm so sorry you are going through this, especially without the calming influence of your dear dog. I hope you get the results of the ultrasound soon and that it is good news. I'll be thinking about you tomorrow and in your pocket with good vibes. Jan (MoCoGram)
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Claire,
I have been quietly following your saga for awhile now. I just wanted to wish you the best for your scans tomorrow and pray that you find a way to tamp down all that anxiety. ((Hugs))
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Hi Claire,
I am also wishing you best of luck for the scans tomorrow. I will be thinking of you and hoping for a benign explanation of your symptoms and prior scan results. I also have terrible anxiety with cancer-related health scares so I can relate to your terror.
On an unrelated note, our dog of 17y died last year and we recently got a puppy. The puppy brought me enormous joy and I totally recommend that you get another dog.
Love,
LaughingGull
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Hi all, thank you. I think about getting another dog but it hasn't even been two months. Because I was tossed into the fire created by one CT scan just 3 weeks after Preshy died, I need to grieve-and because I've been dealing with bad news after bad news from the CT, I have had to put my griefwork on hold. Until I am able to process her loss, I don't think it would be fair to bring another dog into our house, but I'm not ruling it out for the near future.
I had the US today. Gave the tech a typed statement explaining my severe medical PTSD and why I have it (and how I have to be talked to and how information has to be shared in a particular way). She took the care to be gentle, which I appreciated, though I cried all the way through the procedure. I went to my gyno's office who will be callling me with the results and left the same statement with the front desk, asking them to scan it, add it to my medical records, and to make sure my doc there also understands this condition.
Now I wait. I could hear as early as tomorrow, or Friday, when I'm headed to Mayo Clinic to find out if I also have bladder cancer.
Claire
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I hope you hear asap, Claire. Waiting is it's own type of hell I know. Glad the ultrasound went as smoothly as possible.
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Thinking of you, @claireinaz ! Keep us posted. Sending good wishes your way.
—The Mods
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Dear Claire,
I am so sorry about your anguish. I was like that when first diagnosed. On my first appointment with the oncologist I sobbed all the way, since the moment I entered the building till the moment I left. Another terrible time was having the brain MRI to check for brain mets. I had asthma and a cold and was sobbing so much I couldn't breath. Took a while for the technician to calm me down -he was awesome. Glad to hear your technician was gentle. Some of these people are real angels. I think I could use a statement like yours!
I hope you learn the results asap and are as good as they can be. We are on your side, Claire. You are not alone. We are all rooting for you.
My condolences on Preshy's passing. It is so hard to lose pets. I understand you needing to grieve.
Take care,
LaughingGull
Ps: I am sending you a pic of my puppy. He is adorable and makes me laugh every day
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Thanks for the pup photos, all. Here's one of my dear, dear girl.
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Sweet, sweet baby. May she be resting in peace. I would send you a picture of my sweet boy but he's a complete and utter mess.
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