CT done today

pinky104 said:

Metformin

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.

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

cmb said:

Oh, Pinky!

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.

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

pinky104 said:

It's baaack!

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. 

 

 

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? 

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. 

pinky104 said:

It's baaack!

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. 

 

 

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.

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

Xoxo Denise

pinky104 said:

It's baaack!

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. 

 

 

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

you are in my thoughts.
Dumm cancer!!!

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.