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CT done today

pinky104
Posts: 574
Joined: Feb 2013

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.

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

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. 

pinky104
Posts: 574
Joined: Feb 2013

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.

CheeseQueen57's picture
CheeseQueen57
Posts: 803
Joined: Feb 2016

I‘ve got red blood all the time from radiation damage. 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Dear heavens. I'm so sorry. Glad to know it's not from an active cancer, at least. 

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

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.

pinky104
Posts: 574
Joined: Feb 2013

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.

pinky104
Posts: 574
Joined: Feb 2013

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.

 

MoeKay
Posts: 206
Joined: Feb 2004

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.  

 

pinky104
Posts: 574
Joined: Feb 2013

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.

MoeKay
Posts: 206
Joined: Feb 2004

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!

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

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

pinky104
Posts: 574
Joined: Feb 2013

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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EZLiving66
Posts: 1345
Joined: Oct 2015

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

pinky104
Posts: 574
Joined: Feb 2013

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! 

pinky104
Posts: 574
Joined: Feb 2013

What you said about the Levaquin was even more interesting considering I was on the Levaquin twice in November and this started in December.  I'll be sure to mention it to the GI guy.  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

dear pinky, prayers for an answer.  You can make a plan when you get to the bottom of it all.

Kathy G.'s picture
Kathy G.
Posts: 206
Joined: Dec 2012

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

pinky104
Posts: 574
Joined: Feb 2013

I actually felt the same way you've felt for the first six years of my remission.  I pray that yours will continue forever.  Thank you for your kind thoughts.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

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

SF73
Posts: 264
Joined: Oct 2017

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!

 

pinky104
Posts: 574
Joined: Feb 2013

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.

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

and let me tell you, since I started Metformin in October for pre-diabetes, I have been suffering from itchiness myself, in the rectal and perineal area (sorry TMI) and very hard stools. I went to the Gastro Dr and he checked and he saw nothing wrong!
Let us know :)

pinky104
Posts: 574
Joined: Feb 2013

Thank God I didn't have itchiness in those areas.  I can't imagine trying to scratch the itches in public, how hard that must be.  

I love your cat picture. 

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

Laughing

pinky104
Posts: 574
Joined: Feb 2013

I called and got my CT scan results today from my PCP's office.  I have a 5 x 10 cm. mass in the muscle by my right hip.  It's the same spot where my GYN/onc. said he couldn't get all the cancer in my 2017 surgery.  He hoped that chemo would take care of it.  Since all my scans came up negative, it appeared chemo had taken care of it, but it was apparently lurking in there somewhere.  

My PA at my PCP's office called both my oncologist and my GYN/onc (they're at different hospitals) and told them to call me.  I got scheduled for Wed. afternoon in my GYN/onc.'s office and Thurs. morning at my oncologist's office. I got sent to get a CA-125 by my GYN/onc today.  After I got home from that, my oncologist's office called and wanted a CBC and CMP also.  They agreed to let me get them at the hospital when I get there on Thurs.  We have a major snowstorm coming, with ice afterwards, and getting around isn't going to be easy for the next couple of days.

At least this mass explains the numbness and pains down the inside of my legs that I've been getting.  The neurologist that diagnosed me with meralgia paresthetica saying i was wearing clothes that were too tight was definitely wrong.  My PA agreed that this mass could be pressing on the nerve that runs over my hip.

For now, the diarrhea has stopped.  I have to be suspicious that the mass is in other places besides the muscle since it caused a GI bleed.  I wonder what will be done for me this time.  If my GYN/onc. couldn't get all the cancer in the muscle last time, he certainly won't be able to get it this time.  I wonder if I'll get radiation, which I've never had before, or chemo again.  Maybe both.  I'll probably have at least an exploratory surgery.  Bah humbug!

 

My CA-125 was just 17.4 in the middle of January.  I can't imagine how high it must be with a mass of 5 x 10 cm. in me now. Just like last time, it must have skyrocketed.

Well, I thought I'd let you all know what's going on.  Next month will be 9 years since my original UPSC diagnosis.  It just goes to show how sneaky this cancer can be.  Keep a watchful eye on yourselves, and report any symptoms.  I hate to think about how many doctors have missed this recurrence, blaming my symptoms on other things.  I've seen the two oncologists, an orthopedic surgeon, a neurologist, a urologist, my PCP, his PA, and an ER doctor.  I've been checked every 3 mos. by one oncologist or the other.  It's pretty sad.  I suspected the cancer was back in the spring of last year, and that's why I had the CT scan in July.  My leg was getting more numb then. The numbness never went away after the second surgery.  I thought a nerve might have been cut in my second surgery.  How wrong I was!

I'm not looking forward to surgery again.  I'll probably get in pretty quickly as I did the last time.  I was in for 6 days both times I had surgery, way too long. The hospital is very noisy, and it's impossible to get any sleep there.  When you finally get to sleep, you're awoken at about 2:30 am by the nurses coming in to do vitals.

I have to go serve dinner.  My husband isn't taking this well, although I've been preparing him for it.  He broke down crying this afternoon, and he never cries.  I pretty much expected this diagnosis, so it's no surprise to me.  I had hoped for another reason for the bleeding.  I'm actually feeling slightly better since my CT scan.  Maybe that awful tasting contrast stuff helped my gut.

Thanks, everyone for all your replies and good wishes. 

 

 

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

It makes me mad that you have to deal with this stupid cancer a third time. But I'm glad that you've been able to get your appointments lined up this week so that you can determine the next steps. I know that you'll tackle this with the same fortitude you've shown before. But it still really sucks.

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

I'm glad you have gotten appointments so quickly. I admire your stoicism. 

MAbound
Posts: 860
Joined: Jun 2016

It's so hard to hear this, but it just goes to show you how much better you know yourself than the doctors do. And your poor husband! I feel so badly that you both have to go through more of this along with all of the uncertainty. Where's a magic wand when you need one? 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Even if you prepared yourself for this news, it's still daunting. You were relentless in pursuing your concern about this -- a lesson for all of us -- and so it's been caught sooner than it would have if you'd continued to take the reassurances as the final word. We're here for you as you navigate what's next, Pinky.

SF73
Posts: 264
Joined: Oct 2017

I am so so sorry, Pinky. Earlier today I checked the website a few times to see your news. I was hoping for good result. It sucks that it comes back for a third time. Please don’t despair. You have done this before. You can do it again. Demand the best care you can get and keep us posted. Please give our best to your husband. My heart breaks for all our loved ones whose lives forever change with what happens to us. Not fair at all.

Kathy G.'s picture
Kathy G.
Posts: 206
Joined: Dec 2012

Pinky, been checking the board for your update, but certainly wasn't what I (or you!) wanted to read/hear...

I know you've been down this path before, but sometimes that helps and other times it doesn't. I am hoping this time you carry all your knowledge and experience from your prior battles with you like a shield to help you feel less vulnerable to the fear and anxiety that always accompanies this disease.

And on the days you just can't muster any courage  remember you don't have to walk because God will surely carry you.

My prayers continue...for you and your husband.

Hugs

Kathy

oldbeauty
Posts: 191
Joined: May 2012

While we have different tumor types (I am grade II endometrioid adenocarcinoma), perhaps it helps to chime in that I have lived with the disease for going on 14 years.  I may be looking at my 3d recurrence (LL lobe lung nodule) but I don't expect to die this year, although I am bracing for more treatment.  I comfort myself with the thought that there are treatment alternatives for us still.

It strikes me that your case is further proof that CT scans can be so capricious.  How can it miss such a sizable tumor that seems to me must have been there in July?  Are we truly at the mercy of a random "slice" the testing protocol selects?  How frustrating.

If you care to comment, I wonder what your take is about bi-lateral "hip" pain?  In the last week I've seen a P/T who is going to start myofascial release therapy on me next week, and my DO whom I see for pain issues relating to neuropathy, both of whom tell me what I complain of as "hip" pain is not really my hip; it's the muscles that attach in and around there.  I comfort myself that I can't be facing a finding like yours because it is bi-lateral.  The CT I had in December that found the LL lobe nodule was otherwise clear.  But reading your story kind of frightens me that things could be missed only because the CT is not perfect science.

But enough about me; I'll just keep moving forward.  I feel very bad about your latest recurrence.  I can imagine how dispritiing it is for you and your husband but your past treatments have helped and allowed you to remain stable for periods of time.  I have confidence that the next recommended treatment will likewise prove efficacious.  Those of us in the recurrence club have no choice but to accept that this is true; and, I do believe it.  Best wishes to you as you sort this out.  Oldbeauty

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Well definitely not the news you wanted to hear. Can they do a PET to see if there are other hot spots anywhere? Yes I agree with you when you say 'keep a watchful eye on yourselves and report symptoms'! We truly do have to be advocates for ourselves and not be afraid to speak up if we feel the docs are not listening or dismiss something that is a big concern to us. You and your husband are in my prayers. Take care of yourselves and let the tears bubble up so you can deal with the grief and then plan to move forward and get through this next part of your cancer journey. Again sending you lots of love and hugs. xoxo

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Ah, CRAP. I'm so sorry ! If it's any consolation, you're in good company: my tumor, when diagnosed, was 8cm at it's largest point and then blew up to 14cm. The fact that you can still walk is great news. Mine is under the psoas muscle, on top of the sciatic nerve. We can be hip muscle buddies and get rid of these stupid things together ;).  I hope they are going to do a biopsy, if they haven't already, to make sure they're treating the latest iteration of your unwelcome visitor. If they can get it shrunk down to 6 cm or less, it would be a candidate for stereotactic radiation (e.g. CyberKnife), which is a heck of a lot easier on your system than yet another surgery. Since you've never had radiation at all you'd certainly be a good candidate. You will get through this fine but I'm sorry you have to do it at all. Prayers for a speedy resolution, B

pinky104
Posts: 574
Joined: Feb 2013

I wonder if they even do cyberknife in this area.  I'm not thrilled with the idea of travelling to NY or Boston.

I'm glad to hear that yours was so large (for me, not for you)  It gives me some hope.  My memory is lousy, so I can't remember what's happened to everyone on here.  I think I need to keep a scorecard.  I know you've always been great at replying to me, and to a lot of other women on here.  Yes, we can definitely be hip buddies!

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

CyberKnife treatments are different than external radiation, where the usual protocol is 250=-30 daily treatments. CyberKnife is usually just 4-5 treatments, spread over two weeks. Not so bad if you had to go out of area for a little while, perhaps. 

pinky104
Posts: 574
Joined: Feb 2013

Were you saying that the usual protocol for radiation treatments is 25-30 daily treatments?  A few other characters got in the way.  Do you know if the treatments are usually outpatient treatments or if you have to be admitted?  We're still catching up with bills from Christmas and 3 grand of repair bills on my old car last year, four new tires for both our cars, and new $6,000 hearing aids for my husband.  A couple of weeks in a motel or hotel would definitely break the budget.  The cat doesn't travel well and I'd have to deal with boarding her.  We do it once a year for our vacation in Maine, and we both dread the almost hour trip to the boarding facility.

I want to let you know that I found my CT scan report on the patient portal today.  We'll definitely be hip buddies.  My cancer is also in the psoas muscle on the right side plus in the iliacus muscle.  The stomach and bowel showed "no worrisome pathology."  There was no lymphadenopathy in the peritoneum or retroperitoneum (my cancer was there the last time).  There was no hernia in the abdominal wall (it had felt like it was back at one pointI).  The benign appearing liver cyst I've had for years wasn't even mentioned.  The bladder was unremarkable "for the degree of distention."  The bones section said "Nothing acute.  No convincing bone metastases.  There were similar appearing multilevel degenerative changes of the spine."  They had compared it to my CT scan from last July.  So all in all, I think this is very good news.  I expected I'd have some GI cancer after having the GI bleed.  I still don't understand the bleeding unless it was caused by hemorrhoids, but they haven't bothered me for a long time. I'm really hoping to avoid another surgery.  I told my husband last time that I wouldn't go through another surgery like the first two ever again.  I hope I don't have to....

 

 

 

 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Regular external radiation is generally 25-30 daily rounds. It's outpatient and takes about 30 minutes total, from the time you check in to the time you leave.  CyberKnife is a different; I had 5 treatments at 2-3 day intervals. Those treatments were also outpatient and ran about 20-30 minutes each. You can get external radiation most places but CyberKnife is a specialized treatment so you have to go somewhere that actuallys owns that equipment.  Are they going to biopsy this tumor? I ask because that's the same general location as mine (even on the same side) and mine is intestinal of some sort, not uterine. PM me if you'd like to discuss more, okay? Hugs, B

SF73
Posts: 264
Joined: Oct 2017

This IS good news!! So glad to hear nothing is worrisome about the stomach and bowel and no metastases to bones. You got this! I like Lulu's idea of asking for a PET Scan. May give a better resolution on where the problem areas are so that you guys can determine the next steps. Best of luck, Pinky!

CheeseQueen57's picture
CheeseQueen57
Posts: 803
Joined: Feb 2016

Sneaky. This crap reoccurs in the oddest places and fools many a doctors. You don’t want to think every ache and pain could be cancer but the fact is every ache and pain could be. Sucks. 

BluebirdOne's picture
BluebirdOne
Posts: 195
Joined: Jul 2018

Good luck with your appointments, and know that we are all rooting for you. 

 

Xoxo Denise

Donswife48
Posts: 293
Joined: Nov 2015

You sound a little like me, hoping there is a reason for things, but preparing for the others.  I'm so sorry that it wasn't a simple reason.  Just remember you are crazy brave and wicked strong!  That's the motto I live by, if I was just a little more wicked, I'd get it tatooed on me!  I will think of you, pray for you.  I believe in the power of wishful thoughts, please remember me, when ever you feel uncertain, sad (or mad), think of me, in thought ask me to take some of your pain and fearfulness away.  I promise just saying it outloud will somehow comfort you.  Hugs, Nancy

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

you are in my thoughts.
Dumm cancer!!!

Jairoldi's picture
Jairoldi
Posts: 206
Joined: May 2017

I often hate it when I am right. It's true that we know ourselves best. Why won't doctors take us at our word of our worry? Here's to a solid and success ful treatment plan.

barnyardgal
Posts: 212
Joined: Oct 2017

I'm so sorry pinky. I'm sure you and your doctors will come up with a good plan, but it's still hard. Hugs and prayers for both you and your husband.

MoeKay
Posts: 206
Joined: Feb 2004

Pinky, I'm really so sorry to hear the results of your CT.  I hope your doctors come up with a plan of action that kicks this cancer to the curb.  FYI, I'm providing some information below on two clinical trials for ONC201 for advanced and recurrent endometrial cancer.  My childhood friend is participating in one of these trials at Fox Chase in Philly, but it is being offered at other locations.  My friend has stage 4, grade 3, adenocarcinoma and failed standard chemotherapy.  As you will see, the trials are open to all subtypes of endometrial cancer, including UPSC.  My friend's cancer has been stable for about six months now.  She's going for another scan this Thursday.  I'm also providing links to two recent articles about dramatic success stories on ONC201 and a subtype of brain cancer.  The phase 1 results showed promising results in endometrial cancer, especially in aggressive EC.  My friend takes 5 ONC201 pills once a week.  ONC201 acts by blocking the molecular pathways that drive cancer cell growth.

Here are links to the clinical trials and news stories:  https://clinicaltrials.gov/ct2/show/NCT03099499

https://clinicaltrials.gov/ct2/show/NCT03485729

 https://www.philly.com/health/brain-cancer-oncoceutics-philadelphia-dopamine-fda-20181205.html

 https://people.com/health/teacher-brain-tumor-week-to-live-now-thriving/

 

 

 

pinky104
Posts: 574
Joined: Feb 2013

This is very interesting.  My niece lost her husband to brain cancer.  Her bed started shaking the first day of her new teaching job, and she found her husband on the floor seizing.  Five years later, he was dead.  She hadn't married until her late 20's and he was the love of her life.  Her life has continued to be a horror show after that happened, but I won't go into that here.  I'm sure it would have been nice for that drug to come out while he was still alive.

 

I wonder where the other clinical trials are happening.  The trouble with them is that you run the risk of getting a placebo.  With a cancer this aggressive, I don't have time to deal with a treatment that might not be doing anything in the case of receiving a placebo.  I was a stage IVb at diagnosis with UPSC.  I can certainly see it in your friends' case because she has the problem with chemo not working.  Chemo does seem to work on me for a period of  time (a seven year remission with Carboplatin and Taxol, but only two years with Carboplatin (Cisplatin for the last round due to developing an allergy to Carboplatin) and Gemzar.

It sounds like the drug has great promise for certain cancers.  Maybe it will be in widespread use for my next recurrence if I survive this one.  Thanks for letting me know about it.

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

Studies aren't necessarily vs placebo. A lot of times they compare current standard of care vs a new approach (whether that's a new drug, or a new combination of drugs/radiation). Especially with cancer, they're not going to leave anyone untreated for whom treatnent is indicated (for example, they might use a placebo if the standard of care is currently no treatment, like for early stage disease). You still have to be ok with being randomized to an unproven treatment, but not no treatment.

SF73
Posts: 264
Joined: Oct 2017

Excellent resources, MoeKay. I am always so impressed with the knowledge you bring to this board. Thank you!

I looked at the clinical trial in the second link and both arms of the study are receiving ONC201. LisaPizza is right. You never not get any treatment with cancer. The comparison usually is whatever the standard care vs whatever new treatment they are interested in testing. In this case, one arm is with biopsi and the other one without but both are receiving ONC201 as intervention. 

evolo58
Posts: 293
Joined: Dec 2017

This cancer is persistent. 

I am no medical expert. However, I would think a few things need to be considered.

First of all, I am taking it that the onco is SURE that is a malignant tumor. That might sound pretty obvious; perhaps even a little obtuse on my part. But I have had my share (and had it up to here) of radiologists I nickname "freckle checkers" ... those who seem to think EVERY freckle on a CT scan is cancer, whether it is or not. You ladies have probably read enough of my diatribes about these radiologists ... or maybe not, since so many posts have disappeared. False-positives are not uncommon in CT scans, and they can cause a whole lot of worry and expense for no reason. 

However, the problem area appearing in the same problem area as before is a worrisome sign. Hopefully, there will be some sort of follow-up.

Your body insists on trying to heat that oven, but your goose is not cooked. For one thing, there are other chemo treatments to try, and your onco may suggest a maintenance drug as well.

The cancer being in a specific area is indeed one positive sign .... though "positive" might not be the best word here. I know oncos are divided as to whether Stage 4Bs should also have radiation at first-line, but many firmly do not believe in doing that. This might help for once ... radiation is not off the table. That leaves one more possibilty to whup this beast's butt. If it's in just one area, targeted radiation might be a better idea. 

USUALLY, Stage 4s don't get placebos in trials, from what I heard. They might get a standard treatment ... you won't know what will be in your pill, injection or infusion. I know in my case, one trial the onco brought up had a speciifc drug v. taxol. But I do not believe it will be saline v. the test drug, for instance. (I think LisaPizza is indicating the same idea. :) ) 

Nine years is phenomenal. Let's hope that by year 10, you'll be NED and celebrating a fantastic anniversary.

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