symptoms for recurrence

Palor

Hello, All,

I just finished 6 cycles of chemo treatment and is currently in NED status.  I wonder what types of symptoms to watch out for OC recurrence as I do not like to be CT scanned every 3 months (I plan to discuss with my doctor to opt out for CT scans), I'd rather watch symptoms and blood marker.  I do not know if anyone else opt out for CT scans and how do they monitor for signs of OC recurrence.

Thanks!

Palor

Tethys41

Monitoring

Hi Palor,

I can't speak to symptoms of recurrence, but they should be similar to symptoms related to the initial diagnosis. I have not monitored via CT scan since 2010, a year after completing chemo. There is another marker you can monitor. It's called HE-4 Human Epididymis Protein 4. Supposedly, it will start to go up before your CA-125 will, if you're headed towards a recurrence. I monitor both markers as well as some other blood work that measures inflammation, which my naturopath recommends. 

Good luck.

abrub

Ask if MRIs would work instead?

My cancer's origin is appendix, and many of us are monitored with CT scans.  My dr prefers the MRI, so I don't have the radiation exposure.  It's not always an option, depending on tumor types, but worth asking about.  Note:  the time spent in an MRI is much longer than for a CT scan (for me, 1 1/2 hours vs 10 minutes), but there is no radiation.

Tethys41

MRIs

It is true that MRIs use magnetic resonance, rather than radiation.  But the process uses gadolinium as a dye and this has been linked to kidney issues.  I used to receive a breast MRI each year because I'm BRCA positive.  But then I had my heavy metals tested and my gadolinium was extremely high.  Conventional chelation drugs that removed heavy metals are not effective for gadolinium.  I am trying other methods to try to reduce my levels and have opted out of the annual MRIs, for now.

Palor

Tethys41 said:

Monitoring

Hi Palor,

I can't speak to symptoms of recurrence, but they should be similar to symptoms related to the initial diagnosis. I have not monitored via CT scan since 2010, a year after completing chemo. There is another marker you can monitor. It's called HE-4 Human Epididymis Protein 4. Supposedly, it will start to go up before your CA-125 will, if you're headed towards a recurrence. I monitor both markers as well as some other blood work that measures inflammation, which my naturopath recommends. 

Good luck.

Hi, Tethys41,

Hi, Tethys41,

Thank you for your reply, as usual, very helpful.  Unfortunately my blood marker is CA153, not CA125, so HE-4 may not apply to my situation, but I can ask the doctor about measuring inflammation.  

Palor

Palor

abrub said:

Ask if MRIs would work instead?

My cancer's origin is appendix, and many of us are monitored with CT scans.  My dr prefers the MRI, so I don't have the radiation exposure.  It's not always an option, depending on tumor types, but worth asking about.  Note:  the time spent in an MRI is much longer than for a CT scan (for me, 1 1/2 hours vs 10 minutes), but there is no radiation.

Hi, abrub,

Hi, abrub,

Thank you for replying.  Yes, I indeed asked MRI each time they ordered a CT scan, but the answer is always "NO", they said MRI is not good at detecting things in certain organ such as lung.

Palor

Palor

Tethys41 said:

MRIs

It is true that MRIs use magnetic resonance, rather than radiation.  But the process uses gadolinium as a dye and this has been linked to kidney issues.  I used to receive a breast MRI each year because I'm BRCA positive.  But then I had my heavy metals tested and my gadolinium was extremely high.  Conventional chelation drugs that removed heavy metals are not effective for gadolinium.  I am trying other methods to try to reduce my levels and have opted out of the annual MRIs, for now.

Good to know that, so MRI has

Good to know that, so MRI has quite bad side effect too.

bluesmama

Depends on the circumstance.

Depends on the circumstance. For me it was heavy bleeding during periods, clots, bleeding between periods. Upon my recurrence, I felt weak at first and thought it was job stress. Then I had bowel issues and finally bladder and sharp pain just above my pelvic area. It all made sense since my recurrence was on my remaining ovary, had grown large, had grown into my sigmoid colon and was big enough to have been pressing on my bladder and ureters. 

I didn't have MRI/CT scans during the first two years after my first surgery. Since it was Stage 1A and low grade, the doctors didn't think I needed them. Clearly, they were wrong but there was no reason to believe this would come back. Well, it did and was probably growing for quite some time. 

I totally encourage a scan. Since my recurrence, I used to get CT scans but I've been having asthma-triggering reactions to the contrast so they switched me to MRI's. I just had my first one and it was lousy. CT scans take minutes. My MRI took 1.5 hours of sitting still and getting injected with a dye and glucagon shot. I still ended up feeling queezy enough to puke by the time I got home. Am I looking forward to anothe MRI in six months? No. But it's better than waiting for symptoms. 

If you're ever in doubt, call your doctor between scans. There's nothing wrong with being your own advocate. Good luck.

Palor

bluesmama said:

Depends on the circumstance.

Depends on the circumstance. For me it was heavy bleeding during periods, clots, bleeding between periods. Upon my recurrence, I felt weak at first and thought it was job stress. Then I had bowel issues and finally bladder and sharp pain just above my pelvic area. It all made sense since my recurrence was on my remaining ovary, had grown large, had grown into my sigmoid colon and was big enough to have been pressing on my bladder and ureters. 

I didn't have MRI/CT scans during the first two years after my first surgery. Since it was Stage 1A and low grade, the doctors didn't think I needed them. Clearly, they were wrong but there was no reason to believe this would come back. Well, it did and was probably growing for quite some time. 

I totally encourage a scan. Since my recurrence, I used to get CT scans but I've been having asthma-triggering reactions to the contrast so they switched me to MRI's. I just had my first one and it was lousy. CT scans take minutes. My MRI took 1.5 hours of sitting still and getting injected with a dye and glucagon shot. I still ended up feeling queezy enough to puke by the time I got home. Am I looking forward to anothe MRI in six months? No. But it's better than waiting for symptoms. 

If you're ever in doubt, call your doctor between scans. There's nothing wrong with being your own advocate. Good luck.

Hi, bluesmama,

Hi, bluesmama,

Thank you for your reply. This is very helpful information. 

I hope you all the best.

Palor

redyns1008@yahoo.com

Hi, I would highly recommend

Hi, I would highly recommend getting the CT scan every 3 months no matter what.  I have been fighting Ovarian Cancer on and off for 7 years.  I have had so many recurrences that I have lost count.  The only way we could tell the cancer came back was because of doing the CT scans.  I never had any symptoms that made me think the cancer was back!   And my CA125 has never really been a good marker.  I had a recurrence while my CA125 was still in the normal range.  

Palor

redyns1008@yahoo.com said:

Hi, I would highly recommend

Hi, I would highly recommend getting the CT scan every 3 months no matter what.  I have been fighting Ovarian Cancer on and off for 7 years.  I have had so many recurrences that I have lost count.  The only way we could tell the cancer came back was because of doing the CT scans.  I never had any symptoms that made me think the cancer was back!   And my CA125 has never really been a good marker.  I had a recurrence while my CA125 was still in the normal range.  

Hi, redyns1008,

Hi, redyns1008,

Thank you for your reply. I am thinking pros and cons of scan vs. not scan. Is early detection of recurrence helped to control the disease better? I am quite scared of the amount of radiation I would get if got scanned every 3 months. But my doctor tells me that my chance of recurrence is over 80%.  I too do not have much symptoms when I first diagnosed.  I just feel bloating and lots of gas, nothing severe.

I hope you the best fighting this disease.

Palor