emergency PET/CT

Anonymous · May 2011

I am having a PET/CT tomorrow morning so fasting today, in hopes it will improve the outcome of the scans. For the last 6 or more months, I have suffered with extrem lower back and right hip pain. My December scans showed "activty" getting worse. My Onc said to ignore it.

Last Thursday, I went in for my 3 mo check-up and blood draw. My son, also a cancer survivor, came along for moral support. I mentioned that over the last 2 weeks I had developed a terrible headache that will not leave, and vision issues. Again he said it was nothing and I can assume I am cancer free. It was then my son brought up my cancer markers as they have been growing higher at each visit. AgainI shoudl ignor them, as they "mean nothing".

However the next morning, his nurse called to inform me the oncologist ordered an ER set of scans as my cancer markers are now very elevated.

I need to know how many of my TNBC sisters have experieinced severe lower back pain (mines in L1,2,3,4) hip, and headaches with vision issues and if it was "normal" or mets

Thanks Jean

tninalabama · May 2011

You do not have to fast. Just follow the diet. proteins. Please drink plenty of fluids, you will want the tech to be able to hit a vein the first time. I have vision problems, but I attribute it to Abraxane. I wish you luck.

Anonymous · May 2011

I was told only to eat meat, eggs, cheese, peanut butter, broccoli, and spinach. HOwever my cholesterol was over 300 a week ago and I have been told NO meat, eggs, and cheese. Skipped the broccoli because, well we all know what that would do the next day. I did drink lots of water and the stick was not too bad. I've had so many of these darn scans over the last 4 years, every 6 months - or MORE, 1 before Mast, another following. I just wanted this to be the clearest one ever done on me so they could come to some conclusion in regards to what's causing the extreme pain in my spine, hip, and head, along with why my cancer marker has been growing at such an alarming speed.

Titan · May 2011

Lady4law..good luck with your scan and I'm glad you are having it.

JMHO..but your onc sounds like an ass..just saying

Anonymous · May 2011

PET and 2 CTs completed, now the long wait, longer than normal due to this being a LONG weekend.

Titan, what does JMHO means???

Jean

jenn3 · May 2011

lady4law - JMHO (Just My Humble Opinion)

I'm sorry you're going through this and will pray for good results.

Jenn

TiffanyF4 · May 2011

Scans and a lonnnnng weekend! Darn the luck I HATE waiting!

Anonymous · May 2011

It seems like this is the LONGEST weekend ever. I wonder if my Oncologist will be in his office tomorrow, or at least online checking SCANS results.

blondelawyer · May 2011

Sorry you have to wait for the results over the long weekend!

yellowdoglady · June 2011

If the doctor is good, they will get back quickly or will not mind if you check up on it. Mine usually come back in about 48 hours. Especially if you are a lawyer.

yellowdoglady · June 2011

I guess that wasn't a good response to your question.

My biggest fear was when I turned and had intense pain in a rib. I didn't recall any reason for that, so I had it checked out. A bone scan lit up like a christmas tree, so I did some x-rays. Then I was called back for a PET/CT and it was inconclusive, so I was sent for a bone biopsy. But the bad spot was too close to the lung to safely biopsy, so I had to consult with a thoracic surgeon who would just cut the bad spot out, and told me IT WOULD HURT! I did all the pre-ops and was in the hospital for a CAT to mark the spot to cut before going down to surgery.

Then everything got strange. I held my breath for the scan. Did it again. Looked up from the tube and saw three doctors, and then five, looking at the screen and shaking their heads. I was pretty much planning funeral music in my head. Then they were on the phone with the oncologist and I knew it was certainly the end. Then the pathologist came in and they started punching through my rib like I was told was too dangerous a week earlier, but I guess that was okay with six doctors in attendance and one on the phone. Then we all hung out for a few minutes until the results from the lab came up on the screen and all the docs agreed there was no need to operate. They sent me home with a cracked but well healing rib. Nothing bad inside. I hadn't slept in three weeks, so I just sacked out and cursed the whole experience.

The funny thing is I was happier just to know what happened than not. I now get zometa to protect those bones that were so compromised during chemo.

tibet · June 2011

Lady4law

have you got a result? Usually the PET CT result comes out within 3 hours so it is kind strange that they put you on hold for so long. Pls go and ask the doctor. They must give you the result instead of keeping you waiting....

Hope good result for you and everything is fine for you.

Luah · June 2011

yellowdoglady: That must have been agonizing! Thanks for sharing. Always nice to remember that not all bad pains lead to bad outcomes.

Suze35 · June 2011

lady4law - hoping you get your results soon! Keeping you in my thoughts.

yellowdoglady · June 2011

lady4law-

Tell us when you know. It could be bad, or not bad in the least. I guess I wasn't clear enough about that. We can imagine the worst whenever there is an issue, but not every issue is a crisis. I'm hoping you just are tired for lack of sleep and the results are good as can be.

livinglarge · June 2011

I got to agree with Titan... Your onc sounds like a complete ass.

Good luck and will be keeping you in my thoughts and please post how everything goes.

Anonymous · June 2011

Would you believe my AH oncologist STILL has not given me the resutls! I did pick up the actual scans and took them to another Onc, but he only read the print out, which addressed nothing but unable to locate my thyroid (really? It was removed - tumor) "noted" a pacemaker (again - not news to me or my Drs), implants (gee - really) and "healthy well from hysterectomy" (10 years ago) not one word about my brain, both were to have covered. Second opinion Onc ordered brain CTs. Had them on Wednesday and for the first time - ever - bleed. They removed the IV, I stood up and her OMG, looked down and my arm, hand and floor covered with blood. I was not impressed as I was stressed out. They told me to hold my arm close to my body, and I went upstairs to my cardiac surgeons office (surgery coming up) and had just found out my husband has kidney cancer

barbe1958 · June 2011

{{{{{{{{{{{{{ lady }}}}}}}}}}}}}}}

My DH just missed a CT for a mas on the outside of his kidney! Now we have to wait for a re-book. I have an idea how you are feeling.....

Keep us posted, we need to know that you are getting answers.

Anonymous · June 2011

Barbe - My husband's tumor is on the outside of his kidney also. That has a worse survival rate than the ones inside, they are encapsulated within the kidney and when the kidney is removed, so is the cancer, whereas the ones outside, in my husband's case lying between the kidney and the liver in the Morison's pouch. Evidently this pouch does not exist unless there is some sort of issue, fluids, tumors etc.

is your DH is denial also? My was DX with skin cancer about 4 months ago, he claimed it was not (I was in the room with him and the doctor). He was told to return in 3 months, that time 7-8 - on his face. The Dr told him to use chemo cream - he refused.

We had our physicals end of May, and I mentioned to our Dr that he was suppose to have had a follow up CT - 2 YEARS ago, after a small growth appeared on a CT scan (after blood in his urine). She ordered it immediately. Two weeks ago he had another CT, which showed not only a malignancy outside of the right kidney but some other "areas of concern" inside the kidney, 2 on the other kidney and one in the liver.

He's been all over the place, told my surgeon (having pacemkaer wires removed) he did not have the skin cancer, and the nurse turned - looked him in the eyes - and said, "Yea, Dr always give chemo to patients with no sign of cancer." When I went in this week, after the issue with my IV downstairs, the nurse asked where he was. I updated her on his condition.

I told her he did not want surgery, just a new experimental (stupid) procedure whereas a heated prob is inserted into the tumor to kill the cancer. Again the look came on her face, "AH still in denial!". Then she gave me her phone number and told me to have him call her - she had just gone through the same thing. SHe tried that experimental procedure and a few weeks later (think TWO) her CT showed more cancer, she had to take more time off work and lost both her kidney and a piece of her liver.

She instructed me to inform my DH that he CAN live without a kidney, even both (my nephew did for 9 months waiting a transplant) and part of a liver (it will reguvenate) but he can NOT live with cancer.

He's been acting like an ass, since this started. Keeps denying he has cancer, both skin and kidney. When I tried to talk to him about removing rather than sticking a needle in it and heating it up, he put down his laptop and staring at me sai - "You have no idea what I am going though - YOU NEVER HAD CANCER" What the -----?

Not only did I have cancer, almost a dozen surgerie, chemo etc, and 4 episode since (tumors in esophagus, colon, chest, and mouth) but I had it BEFORE the BC, uterus (PAP smear showed cancer, had hysterectomy and they found tumor on ovary), thyroid (1/2 removed) and colon (1/3 removed) YEP colon before and after BC. But I have no idea what he's going through or feeling. At least he doesn't have to go through those LOOKS I got from him, after my breast were removed. (Looked at me like I was a freak and didn't want to touch me again.)

Maybe I should have sent this to you in a PM, but thought it might be of some help to others, not sure how, but you never know.

barbe1958 · June 2011

My DH has neurofibromatosis which means he grows tumours along nerves. He's had them removed from his spine and wrist and he has 3 benign brain tumours so we're hoping that's all this is. He is now a Marshall on a golf course. Finally got a job at 62 and is SO happy I guess he didn't want to burst his bubble. He honestly wasn't sure which day the test was and when he phoned, it was for the past Monday! He was off on that day too! Now he doesn't want to book while he's working as he doesn't want to take time off.

I can't believe your DH doesn't think you didn't have cancer either!! Double denial!!!!

I'm hoping God is being kinder to me than that. My Dad was diagnosed with lung cancer the same time as my DH finding out about his brain tumours!! That was my hell on earth. It can't possibly happen again....could it?

yellowdoglady · July 2011

Lady4Law,

I've heard that you can lead that horse to water, but cannot make him drink.

Long ago, I remember my former husband ridiculing me for staying out of the sun, while he loved to tan himself. I reminded him that my Dad had had skin cancer, so I was not comfortable frying myself. I was a wuss. Okay, I took that label. I wasn't going to cave on that issue.

My Dad ultimately died from metastatic skin cancer eight years ago, seven years after the ex and I split up and decades after that conversation. I read the ex's obit last September. He'd died in February, but no one was eager to publish his passing at the time. I sent out a note asking what had happened. It was malignant melanoma that took him but he would not accept that his vigorous looking tan could kill him. It did.

How to say this? Some people cannot see the risks they are taking though they are risk takers, and cannot take in what is going on around them. Look up "Narcissist" and see what that gives you. If someone who was there at the time cannot remember that YOU had some stuff going on because it is all about THEM, well, they need to get a grip or you need to understand that you are quite alone in that relationship.

Narcissists don't change easily, so give a thought to protecting yourself if any of this sounds familiar. Please.

Anonymous · July 2011

YellowDoglady

Some times you just have to think, what the heck's going on in their heads. My husband has watch both our son and myself fight very tough 3rd stage cancer battles. Both of us were given little chance of surviving 5 years. ANd both of our parents fought cancer, we lost 3 of them to this monster. But oh no, he doesn't have it. I know it could be denial, but gee - time to get a grip - right?

Ignoring his skin cancer, the first time, after all is was "only" 3 or 4 spots removed immediately, or the second time, only 3 months later, (7 or more spots), is one thing, but when you have your CT results in your hand, are viewing the actual CT (tumors) on your computer, and the doctor is on the phone saying, "What part of cancer don't you understand?" - I think it's time to get a grip and start fighting your cancer

Jean

barbe1958 · July 2011

Jean, any word on any of the testing you've been getting? I was hoping to hear some results by now and was excited to see that you posted!

Anonymous · July 2011

NOT A WORD from my Oncologist - can you believe that? I picked up the disc and the written report. However, not sure if it was the way it was ordered or the idiot that read it, but all the report stated (no kidding) was, thyroid unable to locate (removed), pacemaker (surprise???), implants, (again really?) then to top it off, "recovering nicely from a hysterectomy" REALLY I had that 10 years ago. Not one word on the progress of the "areas of concern" on my last scans (lower spine, right hip, and liver). Or the brain mentioned - at all. (main concern was brain due to headaches and vision issues. Then just tossed in, and aneuysm in my aorta. What the heck? You'd think that would have inspired him to call me if not the vague scans.

I saw another oncologist, outside of Cedar's, and he ordered brain CTs. Waiting for those results. and hopefully a re-read, by another radiologist. all my other scans have had 2 reads, this one, going with previous issues on the scans...just one and I can see more on the scans than was reported.

I have been so concerned about my husband being DX with kidney cancer, that I can't think straight. He has a malignancy between the kidney and liver, and 3 "places in need of further investigation" . Got his approval on Friday for the surgery, to remove one kidney. He still appears to be in denial, I think the Drs and nurses what to kick his butt - me to, but the line is getting to long

barbe1958 · July 2011

Thanks for the update! I wish your DH good luck. My DH's Ct was rebooked for Aug 29th....

yellowdoglady · July 2011

Lady4law,

First and foremost, you need to look after You. No one else seems disposed to do that or to allow you that, so you must do that yourself.

Then you must decide if you have the energy to look after someone you love and care for but who doesn't seem to see beyond his face in the mirror, and can't take hard news at all.

If in fact the man won't participate in saving himself, well. that should not detract you from living as well as you can for as long as you choose.

Anonymous · July 2011

Yellowdoglady

I think it took him a while for it to sink in, now if we could only locate some GOOD information for him, like we all found here for our cancer. His is located between the kidney and the liver, and everything I have located is only the kidney. Apparently his cancer is located outside and therefore NOT actual kidney cancer - what the heck you'd call it, is any ones guess.

yellowdoglady · July 2011

lady4law,

I have an old friend from middle school, and her husband just had major surgery a few months ago to get his tumor and the bits and pieces of what the thing in his abdomen had afflicted. It was hours and hours to get out the mass intact. He lost some intestines, a kidney, and some glands and whatnot.

He pretty much loves being the patient and writing regularly about what he needs and how frustrated he is that he isn't given everything in the time he alots. My old friend is running herself ragged being there for her husband and tending to their 6 year old and caring for the house and trying to figure out how to make ends meet. She needs to get a job right away, but can't because every day she is running here and there to doctors or hospitals. She is losing patience, but has no problem asking people from the church to coordinate another week of meals for them, and to babysit her daughter because she is about to explode. She is a strong woman, and no one is looking after her, so it's actually harder on her than her attention-seeking husband.

I hope it is better for you.

barbe1958 · July 2011

But what happend with YOUR CT/PET scan ladylaw?????? I've been waiting to hear!!

Anonymous · July 2011

Yellow doglady I am shocked the way my DH has been acting for the last week. He can hardly stand being out of my sight. He continues to tell me he loves me. I swear he has said it more in the last week than in the 28 1/2 years of our mariage. Where the heck was he for me, when I was scared to death?

He came home last Wed night, and I was with him for all his pre-op workups, banking his blood, EKG, xrays etc. Then when he went back to work, SAn DIego, on Saturday morning, I went with him, He kept me next this side all weekend, even while working. We went to Mexico on Sunday, then on the way back, he asked me if I'd ride down with our son and DIL on Wed morning, just to ride back with him! (125 miles each way) I thought he was joking and then realized he was serious. He has been very exhauasted and falling asleep - a lot. Maybe he wants me to be with him just to make sure he stays away on the 2-3 hour drive.

Re: your friend's husband. Gary has NEVER been like that. IN fact he had hernia surgery and while in recovery was asking if he coudl go back to work!!! He stayed home the next day and returned to work the following (Guess the way Drs count day one as the day after surgery, Gary went back to work on day 2!) He had torned rotator cuff surgery, and had his arm taped to his chest for a week, so was unable to return to work for about 10 days. There's lots of PT, but he refused all of it, and went back to work. ONly occassionally does he say he feels any pain.

Funny thing, I have had about a dozen surgeries since my BC DX, and we have 4 dogs, all small poodles, and they want to be on our laps and sleep with us, a real issue after surgery. My mastectomy was very involved as I had to have my pacemaker relocated at the same time along with recon and took over 8 or 9 hours. I was hospitalized for 8 days. (complications) When I left, with all those drains, I was in a lot of pain. I am sure you know how difficult it was to find a position to sleep in, or even just aly down. Soon as I got home, the dogs jumped all over me. My DH thought it was funny - howmuch they missed me. What the heck? I was in pain keep them away.

I bet he will not think it so funny this time - "payback is a b--ch" - right?

Barbe - I have not even attempted to get my brain scan results or asked for the second reading on the PET, I'll call my Oncologist today or tomorrow...just being doing way too much with Gary. We live in LA and never do sight seeing here, only on trips, so played tourist last week, this week days off spent at medical offices and hospital, then I returned to SD with Gary for a few days. Came home yesterday,a nd will be returning to SD tomorrow, just to ride home with Gary. (Think he's afriad of falling asleep on the ride.

yellowdoglady · July 2011

Lady4law,

I'm always sorry to hear that it's harder than we need it to be. But be sure that you get what you need to survive too. That can be hard to do if everything is about someone else, even just because you make it so.

I think all of us here are planning to survive, so I assume you are too. Take care of your special people, but also take care of yourself. Fun is so wonderful, but don't put yourself on the back burner, ever. You are important too.

emergency PET/CT

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