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CT scans, ultrasounds, etc. ... any contradictions?

evolo58
Posts: 293
Joined: Dec 2017

I'm sorry. No matter how I look at my CT scan, it seems ... odd. Off. I am no doctor (though my PCP is, and even she thought the results were unusual, though she did mention that my gyno onco is more the expert on them.) My hunch may be futile or incorrect, and I know this. I also understand, as my SECOND-opinion doctor explained (my current one didn't bother), even if any CT results turned out incorrect, my UPSC diagnosis pretty much takes over the show, and ANY doctor worth his or her salt will go by the gloomier predictions. I also understand that peritoneal/omental involvement is common in Stage 4 UPSCs, and the exceptions I'm seeing are even more rare than my UPSC, despite my clinical history.

But other people with other cancers have given me SEVERAL stories of how their initial tests indicated one thing, but the final result was very different. I had a couple of ladies tell me that their CT scans showed nodularity in their peritoneums and omentums, and they got all sorts of doom and gloom predictions, only to find out that their repeat cesareans were the culprits. Now admittedly, in their case, they did NOT have UPSC, but it does make me wonder. Either I or my husband talked to others with advanced-stage cancers who initially had doom-and-gloom CT scans for issues related to their diagnosis, only to find out the findings were benign. I've read that in some CT scans (paritcularly lung), there can be up to 1/3 false-positives.

Ultrasounds are usually the first findings that go out the window when a doom-and-gloom CT scan occurs ... I'm guessing because the U/S findings are fuzzier, to use a non-medical term. But in my case, the U/S and CT scan results show entirely different results (I mean REALLY different), even allowing for the fuzziness. And again ... UPSC, the great party-crasher. I know. So for now,  according to the second-opinion doctor, the U/S results are pretty much on the cutting-room floor. Even if those were correct, the UPSC ... well ... you get the idea!

So ... have any of you or your loved ones or acquaintances had CT scans, PET scans or MRIs that indicated one result, but it turned out to be very different ... hopefully, not as bad? I know these would be unusual, but goodness ... for many of us, some of our cancers are unusual! :)

I should indicate that no matter what I think, I am going with my treatment program. I can't afford to be wrong re my hunches, I KNOW I'm no doctor, and I know that my percentage of being right is low. However, I have come to the firm conclusion that really, the doctors aren't going to know what's going on until they take stuff out and biopsy it. Not exactly the best medical terminology there either!

saltycandy13
Posts: 167
Joined: Dec 2017

My husband's Urologist calls Ultrasound, "Fuzzy-sound."  She doesn't trust them - says they are very inaccurate.  Example, my first transvaginal showed a large white blob in the uterus with a 9mm thickening.  They tried to biopsy that white blob and I was screaming on the table because I am the type of woman that needs to go into surgery for D/C and not office biopsy.

When I finally had the D/C, I asked my doctor what that big white blob was and she said "What?"  "There wasn't anything like that."  What they did find was a 9mm thick lining with about 100 baby polyps with stalks that she cut down.  I bled for 2 weeks straight after that.

Right now my Ultrasound back in November showed only 3 polyps.  Another D/C and now after biopsy, I get told "atypical, complex" and pre-cancerous for off I go for complete hysterectomy.

I don't understand any of this so I got an appointment with a gyno-oncologist whom they already told me might order more scans before the hysterectomy.  Nevertheless, I plan on hysterectomy

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Anytime you feel that something isn't right, go with your hunch.   Get a second opinion or even a third.

When I first was having problems, I went to my PCP.  Indicated I was probably having anxiety.   I wasn't I was in pain.   Sent me for colonoscopy.  No real findings.  I then went to my gyne.  They did an internal ultrasound.  Tilted uterus - nothing to worry about.  INdicated how bad my pain was - gave me pain pills.  Then did a laparoscopy.   Said I needed a hysterectomy but they put me on Lupron for 6 months to "soften" the lesions.  I asked about cancer and/or any scans and was advised I didn't need anything.  Went and had hysterectomy done - afterwards was told I had cancer and had to have another surgery.

Second time - I was again having pain.   My original doctor retired.  With a new doctor.  He ordered a scan.   Said I had a soft tissue mass and needed to start chemo right away.  Also indicated that I would probably end up with a permanent colostomy.  I didn't feel comfortable with that and sought another opinion.   That doctor did a biopsy which came back positive.   This doctor wanted to do radiation but my radiation oncologist indicated that once I had radiation I couldn't get it radiation again there and if it came back it could be fatal.  So this doctor put me back with another doctor from the first group who indicated he couldn't do the surgery because it would take 10 hours and he didn't want to do it.   I then sought a third opinion at another state.  They retested my previous biopsy.  It was positive but this doctor indicated he could probably do the surgery.  He did and the mass was negative but they found a lymph node that was positive.

Another incident.  My husband was turning yellow.   It seems he had a blockage.  They did an ERCP and biopsy.  The test came back inconclusive.   This was in October of 2015.  For the next several months, he had two more biopsies.   Another inconclusive and then a positive one for pancreatic cancer.   For over a year he could have had it taken care of.  What should have happened was at the first inconclusive result he should have been sent to an oncologist.  Fortunately, his Stage 3 pancreatic cancer didn't spread.  He had a Whipple Surgery in October of 2016 and is doing fine.

I recently had several biopsies which all came back negative.  The thing about biopsies is that it is only a very small part of the mass.  Unless it is removed entirely to be tested, there is no way of actually knowing whether or not any malignant cells exists.   That is why I am currently in an observance phase.   One of my masses is PET positive but it is on the low side and my CT scan and MRI scan indicates it could be a recurrence, but with a negative biopsy there really isn't anything to do at this time but wait and watch.

My best to you,.

Kathy

evolo58
Posts: 293
Joined: Dec 2017

Well, I'm due for the second CT next month. I just wish it was someone else doing the reading. 

In the old days, my family and specialist doctors would also directly look at the films and ultrasounds and talk with the technician. I was suprised to learn that doctors don't do that much anymore. They discuss findings, but don't look at the films or ultrasounds. In the 90s, my gyno himself had the U/S done in-office and read the results. He also showed me the films and explained just what he saw. Specialization is good, I guess, and I guess I'm old-fashioned, but I really would prefer having TWO sets of eyes looking at the results, rather than a doctor simply accepting them.

Though usually a good diagonstic and imaging tool, CTs can have a reputation of being misread and misinterpreted. Many medical journals caution CT technologists about misinterpreting mimics for certain grave conditions and uneccesarily causing panic and unneeded procedures. I had a nurse and a doctor tell me about recently-misread CT scans. Because of the nurse's knowledge of her patient's clinical history, she saved a patient from an unecessary procedure. The doctor's misread scans came from the same facility that did my CT. (The nurse lives in another state.) Maybe it was just a couple of CT scans, and 95% of the time, there are no problems, but ...

In still another state, a family friend got a doom-and-gloom result from a CT scan a few years back, only to find out he just needed surgical intervention and the problem was NOT cancer. Much celebration there!

This is probably why PET scans might be more accurate, but of course, those are often not covered by insurance. And while they're probably more accurate, I don't know if they're 100% accurate either.

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

It is frustrating that one set of eyes can see or MISS something...

My initial CT's were read by a radiologist but it was my radiology oncologist who caught that I had cancer in two lymph glands in my neck area.

by luck (because I am short) the glands were visible on the edge of the scan...it just caught them (it was a pelvic/abdomen CT)---twice I had the area scanned and TWICE the radiologists that read them missed seeing the enlarged glands. When my radiology oncologist was looking at the scans himself (my gyno oncologist sent the scans (she admits missing it too) to him to see if he felt I needed radiation therapy and he called her immediately). When I met him I was flabbergasted to hear him say my pelvic area looked good (but still needed radiation) but that there was an area in my neck of concern and that I was now classified as Stage 4. 

He showed me the scans...I cried...

After pelvic radiation he had me scanned again and a PET scan and sure enough the glands in my neck were enlarged and lit up on the PET

He's still angry at the original radiologists for missing those glands...if not for him I could still be walking around with cancer in my neck and no one would have been the wiser...

so yes, I totally agree more than one set of eyes should look...lucky for me my doctor is an angel and saved me...

evolo58
Posts: 293
Joined: Dec 2017

So you DID have multiple sets of eyes looking at these scans. More than two in your case! Your Angel proved to indeed be one. 

Kind of scary that ONE person can either subject you to expensive tests and procedures you don't need, or overlook something really important. Good thing your Angel (and certain other doctors here) are the old-fashioned type. However, it kind of scares me that most doctors are not anymore. One person makes a pronouncement ... that's it. If the person got distracted or developed a cognitive bias (I think someone on these boards called it being "cancer-centric", where something that turned out NOT to be cancer gets linked to a cancer) ... I know these tests are probably the best guides we have right now, but false-positives and negatives do concern me.

One source: http://blog.dana-farber.org/insight/2016/03/what-are-false-positive-test-results-and-what-causes-them/

As you see, the percentage can be just a little higher than the one I suggested. And there was quite a large group of subjects, including ovarian cases. I am not saying that any of our tests produced false-positives and negatives, other than the examples here (from what I'm reading, most did not), but perhaps we should at least ask questions. And most of all, DOCTORS should be asking questions if something seems odd. Doctors like Angel. THEY would be the best people to say, "Wait ... hey ..."

 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Just to make it more interesting---my doctor's name is LITERALLY ANGEL...all his patients give him angels and they are all over the office...I love him not just for saving me but for working so hard to make sure he does everything he can for me. He was so angry at the other radiologists for missing it...he phoned a surgeon when I had my last office visit (he is unsure if we should take the lymph nodes or not...the PET will help us to decide) and as he was talking to the surgeon he said "she's the one I have been telling you about---the one they missed seeing the cancerous lymph glands"...I'm very lucky to have him (he is head of radiology oncology so I am sure some heads rolled after what happened with my scans...

It seems common sense to me when we are talking about cancer that more than one set of eyes should look at these scans...and they should be trained to do so...

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

Your story is scary because most of us only have abdominal/pelvic scans that would not necessarily pick up anything in the neck area. 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

that's the part that makes me wake up in a cold sweat...it could have easily been missed...

when I met my radiology oncologist I thought he was looking at the wrong scans---I was mad enough that I was possibly going to have to have radiation (so this was my "meet the doc and see what he says" appointment) so I thought "damn---so here's this good looking doctor who seems very sweet but he's an idiot because I don't have cancer in my NECK"...

I kept saying "it's in my pelvis" 

He kept saying "I know...and in your neck"

So he pulled up the scans and showed me how the scan just barely caught the nodes...and he was angry (not at me) but that those nodes had been like that for 6 months...

then he told me it made me stage 4 and not stage 3 as we previously thought...

after that I burst into tears...

I got very lucky...I am blessed to have him as my doctor...he's the most caring man I have ever met...and he's damn good at what he does...

my CA125 was rising again so I'm sure that might have flagged things but many things (including radiation) can make it rise...I just got lucky...

evolo58
Posts: 293
Joined: Dec 2017

And insurance companies can be so reluctant to get a second-opinion PET scan. For many of us, CT scans are the main ones because many of us can't shell out the money for extra tests out-of-pocket. And unfortunately, many of us have to rely on ONE doctor or tech. No Angels.

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I'm very lucky...I am at a large medical facility with many doctors...trust me it breaks my heart when I think of women in my position who live in areas where they do not have access to the amazing health care I am blessed to receive...

There is a world renown cancer hospital just down the street from the hospital I receive care at---my doctors left the former to have fewer patients that they can treat more intimately....the other hospital is AMAZING but I was blessed to find my Angel and my gyno oncologist where I did...they are incredible...I am beyond blessed...

evolo58
Posts: 293
Joined: Dec 2017

Looking at these posts, remembering my conversations with my friends and two medical professtionals, and reading stuff until my eyes got bleary, including something from someone on another site who apparently reads CT scans for a living, I've come to the following conclusions:

CT scans are not the be-all and end-all of all diagnosies. Though not common, and though most scans are accurate, scans can sometimes be misread.

A CT tech will be very thorough listing ANYTHING suspicious, even remotely so. Better safe than sorry. Better to list it than deem it unimportant and find out later he or she was wrong, and the patient suffers as a result. It can be a real worry to the patient, but a doctor will often look at other sources, such as clinical history, and take those into consideration, or will do other tests to make sure.

After talking with my second opinion (and starting soon, my MAIN doctor ... I've decided to switch)*, no matter what, ALL hints of UPSC need to be addressed aggressively. Although it's very unlikely, even if I was right about those nodules, I have UPSC. It supersedes all. Others have names for their UPSC (mostly printable, but I'm sure some are not) .... I call it the gatecrasher (though another person's name is probably more accuate ... El Diablo) UPSC can even supersede a CT scan. No matter what percentage of the tumor is garden-variety, UPSC is just that sneaky. My doctor's nurse has told me that sometimes, pathological results can be wrong too, though that is REALLY rare, but right now, barring some odd miracle (which I welcome, but we ARE talking about a genuine miracle here), I have UPSC in some percent in my body. I will need to deal with it for the rest of my life.

Oh, one more thing ... I need to proofread better!

*Or not ... now the second-opinion doctor is insisting I'm out-of-network, even though my insurance company has her listed as in-network. Unless she changed her office's insurance policy this year? I really don't know what's going on. Y'know ... things are stressful enough as it is without insurance hassles! I so envy people in the UK and Canada .... 

SF73
Posts: 277
Joined: Oct 2017

They are the worst! In my case, even though three oncologists from three institutions agreed that Avastin could be helpful, insurance company denied it. Each injection costs about 14K so I decided not to pursue it more. Now they say there is no value in genomic profiling of my tumor. For that I will pay. (Though it seems it will be easier to do it through UCSF than Foundation One)

evolo58
Posts: 293
Joined: Dec 2017

Yowch. So ... what alternative is the inusrance willing to pay for? Please, please tell me they are offering something that can help.

I get mixed messages about the genomic testing. The place where I'm currently getting my treatment says that insurance MAY cover it if the onco insists it's necessary. The second facility, I got two different answers. Not holidng my breath here. I am presuming that when I finally get that ball rolling, I MIGHT get a financial break with Foundation One, but I can't afford the full price. Too rich for my wallet. Hope for the best, assume the worst. If either doctor ... whichever one I stay with ... manages to pull a rabbit out of a hat and convinces the insurance company to pay most or all of it, I owe her lunch at a fancy place. Not making any reservations, though. I've read that Foundation One also tries re-submitting the claim.

I am also looking into the genomic testing at the second facility. If the price is lower, maybe I can at least use that option. There are one or two disadvantages, but at least I'll have my genomic testing done. However, I have to get INTO this facility first!

I'm getting a similar story with genetic testing. In my case, though, the care center is pursuing the idea that I don't know half my family tree (long story ... yup, some bad blood in there). While I understand why my father resented them and severed all ties (I have never personally met any of my father's relatives, and have no idea where to even find them) this is proving to be a bit of a problem right now. Anyway, since I'm missing half my genetic history, they are pushing my case as a special one. We'll see if they succeed.

Also in my case, the insurance company seems OK with the second doctor when I talk to them. It's the second doctor's office that is insisting that the insurance company is considering her out of network.  Yup .... two enitrely different stories. Someone is obviously wrong, and I get to figure out who and if I can fix this. It's not horrific. My current surgeon is a well-regarded one, and the facility is nationally well-known for its cancer care, including gyno cancers. It's just that the doctor I'm trying to get has done extensive research on Type II cancers, inluding UPSC, and is head of gynecologic oncology at another well-regarded cancer center. I also feel I can work with her and her team much better. Both are on USA Today's list. The one I want is slightly ahead. I'll just leave it at that.

My husband's and my history with hospitals and their flaky billing methods goes way back, encompassing different hospitals. In one case, we inadvertently helped cause a state investigation that ruled in our favor. In another instance, a billing clerk made a mistake with our address. We didn't get any bills, but did get a very pushy collection agency. We had to go through three or four people at the hospital before we finally found a person with a brain. We quickly reached a payment agreement with her, she called off the collection hounds, our credit rating survived, and we paid off the bill. And there are other stories. Dealing with hospital billing departments is NOT fun. I wasn't exactly looking forward to Round (counts on fingers) ... oh, I lost count at this point. 

SF73
Posts: 277
Joined: Oct 2017

The representative from the insurance company just said it was not approved for my type of cancer which of course we cannot dispute. Even after peer to peer review where my oncologists made an argument that they cannot rule out me having two simultaneous cancers (endometrial and ovarian - avastin is approved for ovarian cancer) they said no. I was not really sold on whether it would add much to Carbo/Taxol that I was prescribed. I was also afraid of the side effects. I thought Metformin's angiogenesis properties will protect me but with the latest granulation tissue and/or residual ovary issue clearly my body loves making veins. We can still appeal and try to get on it for maintenance. 

Fighting hospital bills is a quixotic act. Here is an article about a silicon valley executive whose specialty is understanding hospital bills. She got an unfair bill and ended up paying. (https://www.cnbc.com/2017/12/19/social-capital-kristin-baker-spohn-health-bill-horror-story.html) Good on you for fighting the good fight!

evolo58
Posts: 293
Joined: Dec 2017

That article brings me back. And people think this is preferable to the health care system in the UK, Canada, Japan .... ? There can be little more frustrating and formidable than hospital billing departments! And when they sic collections on you ... oh, it gets even better. My sympathies to that woman. All you want is a logical explanation or a reasonable way to clear things up. I guess that's asking too much. 

We did have a bout of fun and goodness with the birth of my second daughter at still ANOTHER hospital. I got around collections by explaining the situation and paying everything BUT the disputed amount umtil we finally sorted it out. Eventually, though, that might not even be enough today. It miight be my imagination, but hospitals and doctors offices are FAR more aggressive now than in the 90s, with far more clout. Back then, you could sit down and actually TALK to someone face to face. Now, a lot of services are outsourced ... often to different states or even countries.

Hope you win the appeal.

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Wow Evolo,

You ask good questions.  I've had CTs, PET scans, ultrasounds, what have you...in my very simple understanding, these tools measure different things.  CTs point to unusual patterns, PET scans look at the cellular activity.  At any rate, doctors look at these tools for different things, and then put them together for the big picture.  I would add the C-125 sometimes can be a tool as well, for noting changes.  My doctors also relied on how I felt, if I noticed any changes, etc.  All these tools are there to help locate, detect, measure, etc., but you and the experts work together to get the "real" picture of what's going on.  I feel very fortunate to live in a time where tools exist and improvements and discoveries are always around the corner.

Best wishes along your journey,

Susan

evolo58
Posts: 293
Joined: Dec 2017

Got my second CT scan pre-surgery. The surgeon seems very pleased with it, and the date is officially set now ... Feb. 14th. CA-125 is down to 13. I'm HOPING she thinks these two tests are favorable for me.

There was a small nodule on the bottom of one lung, but we're going to watch that one. Lung CT scans can often show false positives or nodules that aren't cancerous, and I'd rather a surgeon NOT take out something that is perfectly healthy. The first CT scan didn't see it, but that does not mean anything. We were looking at kidney stones, and this scan focused more on the lungs than last time. According to my surgeon (and my research), this thing could have been in my chest for years and no one knew about it! I know of friends who have this situation now. So watchful waiting on that one. 

I admit, I like the second CT scan guy better. He was much clearer than the first guy, though he went primarily off the first scan, so I still have no idea whether the first guy was correct.

But again, I have questions that can't seem to be answered. The second CT scan stated that "previously noted peritoneal and omental nodularity has improved, though remains." 

Peachy .. really, it is! .., but how MUCH did it improve? Just a little? A lot? Is there a small patch now, or is it still extensive? How extensive was it last time? And where the blank is it? The omentum/peritoneum covers quite a bit of the body! Is it near my myomectomy site, and might we still be talking some scarring there? Maybe it's a combo of lesions and cancer nodules? (I've read how ladies here had cancerous growth near surgical scars close to the uterus.) I know the latter isn't likely, but with something covering that much of the body, you'd think we could be just a little more specific!

And ... sigh ... it still seems like Stage 4B. But even the surgeon said that we could not be sure until we get pathology results back. I hope THOSE aren't as vague!

This is what I do NOT like about one set of eyes. Those of you few lucky ones who had a second set of eyes look at the films and can answer questions are so, so lucky! I miss the days when my old gyno would look at films as well.

But it was good to know that the second CT scan was much better than the first, I didn't go through three chemos for nothing, and surgery is now a go. And even though this second dude can be vague too, I'm going more with HIM! 

Northwoodsgirl
Posts: 559
Joined: Oct 2009

So glad to hear the second scan looks better! I had my omentum removed as a precaution even though I had no lymph node or omentum involvement and was Stage 2b. Will keep you in my prayers on the 14th of Feb! 

Lori

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

so I can send good thoughts your way on Valentine's Day. 

SF73
Posts: 277
Joined: Oct 2017

your second scan is much better. Your CA125 number is also fabulous. Congrats on such a dramatic drop! Wishing you all the best luck on Valentine's Day. I hope a good outcome would be the best Valentine's Day gift you and your husband have ever received :)

calliegirl
Posts: 48
Joined: Jan 2018

through this experience is to be your own advocate. Listen to your inner voice, your gut! Only you know your body the best, not the doctors. And yes , there can be many contradictions, as each radiologist reads scans, results differently....

my oncologist did not even tell me about findings in my lungs, until I logged onto my insurance and find out about nodules, and abnormal lung field findings, stating my secondary dx is endometrial cancer (metastasis?) I had to call my oncologist to get him to follow up and now Im scheduled for 3 month repeat scan...so yes there are many contradictions...because i was dx with stage 1 with LVSI, and now the radiologist who read my scan on lungs is thinking otherwise...it can all be very confusing...

praying for you to have good results...

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