Ask for CT scan for 3 month follow up?

willbesurvivor

Hi everyone,

Just quickly as an update mum is just starting radiation treatment, with cispl each week. After 4 taxol/carbo her ca125 has now dropped to 27 so we are all happy that it is within normal range!

We asked about what happens after treatment and they said they just do a ca125 test and physical examination every 3 months. They don't do a CT scan unless someone feels that something is wrong or is scared because of the amounts of radiation from the scan.

We also asked about maintenance chemo and they said there is no evidence that it works for uterine cancers (he said it might extend remission period but not the overall survival) so they don't recommend it.

I am, however, a little worried because I have read on the OVCA board that people have had normal ca125 and scans have shown cancer.

Is this what everyone is doing (has done)?

upsofloating

My first 3 month follow-up
My first 3 month follow-up included CT scans of chest, abdomen, pelvis as well as ca125. I did find it reassuring to have. If CT was normal 3 months after stopping chemo and ca125 was also normal then I would feel better just monitoring ca125. Cancer growth is opportunistic and it is possible to have a resurgence once opportunity presents itself. However if all was normal at 3 months there is a greater likelihood that chemo did a thorough job of eradicating cancer. But there are no hard and fast rules here. My ca125 and CT scan then PET scan were abnormal at 3 months but before any treatment could get underway, ca125 returned to normal and then repeat CT scan showed nodes shrinking or gone. So, go figure. I did recur later and have been doing second line chemo, but I was stage 4.
Great news on normal ca125 at this time!
Annie

sleem

CA 125
At the time of my surgery to complete my diagnosis for UPSC, I had had a chest x-ray, CAT scan, and a CA 125- all were normal (My CA 125 was in normal range.)
CA 125 is best for ovarian I've been told. Yet, it is all that there is for us UPSC.
My doctor will not scan (except chest x-ray yearly) unless I physically demonstrate symptoms or my CA 125 has steadily risen within normal range over time or if it has doubled. Research shows that CA 125 can have false positive or false negative results and can show either a person did or did not really have cancer when the case was opposite.
Check out CA 125 on net with quality sites.
A PET & CAT must have something to pick up to see.

:My doctor also says current studies show that starting chemo/radiation before seeing it on scans also does not currently demonstrate benefit for survival rates with (UPSC) at this time with the limited studies available. My doctor stated that if the end result is the same, what type of quality of life is sacrificed for starting treatment sooner becomes the question for her and her patient.
I don't know how all this makes me feel. I just wish not to have it recur in the first place. However, that is in the hands of my body and my Lord. As a lay person, it would seem that getting treatment before it can be seen on a scan is a good idea. Yet, so far, my conversations with my health care team is with the same mind set of when to scan and treat if the results are coming out the same. I might cross that unhappy bridge soon as my CA 125 might be rising ( the methodology at the hospital for CA125 changed last month & caused the CA 125's to go crazy in different numbers. Therefore, we will wait until the next numerical number with this new metholodlogy before knowing if my CA 125 really went up or in actually was the same as in the previous methodology with different reading procedure.

Susanna23

CT scans or not for follow up?
Hi - my attention was definitely caught by this topic! I have uterine carcinosarcoma (also known as MMMT) Stage 1a and I have just completed six rounds of adjuvant carboplatin and taxol, following TAH-BSO and lymph node dissection in November. I actually had a CT scan two weeks ago (chest, abdomen, and pelvis) which was clear so I am now NED (no evidence of disease) - ideally I'd have had this four weeks post-chemo but there was a bit of a mix-up (didn't think fast enough - should perhaps have asked for it to be rescheduled - a later scan might have been more informative, in case some of the 'evil aggressive cells' that MIGHT have survived chemo [if they were there in the first place] start talking to one another and making plans...). Anyway, I will be followed up with physical exams and blood tests every three months for two years then six monthly to five years, with a yearly chest X-ray. My gyn/onc consultant says that there is no evidence that follow up with routine CT improves survival (now, I forgot to ask is this in carcinosarcoma - I doubt those studies have been done - or in uterine cancer, or in cancer?) My recent CT scan (also had one before surgery) is to be used as a base line and if I have symptoms or concerns they will order me a CT scan and compare it with the base line one. I am at UCLH (London) and learned recently this is also the follow-up protocol at MD Anderson so that reassures me, as does your post.
I'll just throw in something about Ca125 - I have been told repeatedly it is not a useful marker in carcinosarcoma, yet they measure it - values have been 14 to 15 throughout chemo and it was not done before surgery. They will measure it during follow up. I was warned about normal values possibly masking a recurrence and giving false reassurance. Clearly some more studies on the role of Ca125 in the various kinds of uterine cancer are needed.
I wish you all very well and look forward to reading more of your posts
Susan x

Susanna23

CT scans or not for follow up?
Hi - my attention was definitely caught by this topic! I have uterine carcinosarcoma (also known as MMMT) Stage 1a and I have just completed six rounds of adjuvant carboplatin and taxol, following TAH-BSO and lymph node dissection in November. I actually had a CT scan two weeks ago (chest, abdomen, and pelvis) which was clear so I am now NED (no evidence of disease) - ideally I'd have had this four weeks post-chemo but there was a bit of a mix-up (didn't think fast enough - should perhaps have asked for it to be rescheduled - a later scan might have been more informative, in case some of the 'evil aggressive cells' that MIGHT have survived chemo [if they were there in the first place] start talking to one another and making plans...). Anyway, I will be followed up with physical exams and blood tests every three months for two years then six monthly to five years, with a yearly chest X-ray. My gyn/onc consultant says that there is no evidence that follow up with routine CT improves survival (now, I forgot to ask is this in carcinosarcoma - I doubt those studies have been done - or in uterine cancer, or in cancer?) My recent CT scan (also had one before surgery) is to be used as a base line and if I have symptoms or concerns they will order me a CT scan and compare it with the base line one. I am at UCLH (London) and learned recently this is also the follow-up protocol at MD Anderson so that reassures me, as does your post.
I'll just throw in something about Ca125 - I have been told repeatedly it is not a useful marker in carcinosarcoma, yet they measure it - values have been 14 to 15 throughout chemo and it was not done before surgery. They will measure it during follow up. I was warned about normal values possibly masking a recurrence and giving false reassurance. Clearly some more studies on the role of Ca125 in the various kinds of uterine cancer are needed.
I wish you all very well and look forward to reading more of your posts
Susan x

cleo

Susanna23 said:

CT scans or not for follow up?
Hi - my attention was definitely caught by this topic! I have uterine carcinosarcoma (also known as MMMT) Stage 1a and I have just completed six rounds of adjuvant carboplatin and taxol, following TAH-BSO and lymph node dissection in November. I actually had a CT scan two weeks ago (chest, abdomen, and pelvis) which was clear so I am now NED (no evidence of disease) - ideally I'd have had this four weeks post-chemo but there was a bit of a mix-up (didn't think fast enough - should perhaps have asked for it to be rescheduled - a later scan might have been more informative, in case some of the 'evil aggressive cells' that MIGHT have survived chemo [if they were there in the first place] start talking to one another and making plans...). Anyway, I will be followed up with physical exams and blood tests every three months for two years then six monthly to five years, with a yearly chest X-ray. My gyn/onc consultant says that there is no evidence that follow up with routine CT improves survival (now, I forgot to ask is this in carcinosarcoma - I doubt those studies have been done - or in uterine cancer, or in cancer?) My recent CT scan (also had one before surgery) is to be used as a base line and if I have symptoms or concerns they will order me a CT scan and compare it with the base line one. I am at UCLH (London) and learned recently this is also the follow-up protocol at MD Anderson so that reassures me, as does your post.
I'll just throw in something about Ca125 - I have been told repeatedly it is not a useful marker in carcinosarcoma, yet they measure it - values have been 14 to 15 throughout chemo and it was not done before surgery. They will measure it during follow up. I was warned about normal values possibly masking a recurrence and giving false reassurance. Clearly some more studies on the role of Ca125 in the various kinds of uterine cancer are needed.
I wish you all very well and look forward to reading more of your posts
Susan x

CT scans
I also have a carcinosarcoma, stage 3/4 [through to bladder] I had blood tests 3 monthly, CT scans 6 monthly for two years. Was also told that CA 125 is not a good marker but still have that blood test 6 monthly. After clear scans for two years I am now checked yearly and, as Susan, will have a CT scan and check immediately if there should be any concern. I also watch with interest as I had radiotherapy only and was told that should chemo follow on it would be necessary for me to be hospitalised - though reading this site it seems that there is chemotherapy treatment that is not that debilitatng. I certainly appreciate the information that is gained from all the postive ladies here.

Songflower

cleo said:

CT scans
I also have a carcinosarcoma, stage 3/4 [through to bladder] I had blood tests 3 monthly, CT scans 6 monthly for two years. Was also told that CA 125 is not a good marker but still have that blood test 6 monthly. After clear scans for two years I am now checked yearly and, as Susan, will have a CT scan and check immediately if there should be any concern. I also watch with interest as I had radiotherapy only and was told that should chemo follow on it would be necessary for me to be hospitalised - though reading this site it seems that there is chemotherapy treatment that is not that debilitatng. I certainly appreciate the information that is gained from all the postive ladies here.

Followup
When I first completed treatment for serous she told me no scans just CA 125. But I relapsed so fast with CA125 that I got a PET scan. Now I get PET scans every three months but I think that is because of the relapse. My Doctor prefers PET scans and I have never asked her why. The oncologist who did my hipec prefers CAT scans. PET highlights early cancer and CAT scan picks up tumors 1 cm and up. Some prefer not to treat until the tumors are larger. Now I get so many scans I glow in the dark.

Diane

willbesurvivor

Songflower said:

Followup
When I first completed treatment for serous she told me no scans just CA 125. But I relapsed so fast with CA125 that I got a PET scan. Now I get PET scans every three months but I think that is because of the relapse. My Doctor prefers PET scans and I have never asked her why. The oncologist who did my hipec prefers CAT scans. PET highlights early cancer and CAT scan picks up tumors 1 cm and up. Some prefer not to treat until the tumors are larger. Now I get so many scans I glow in the dark.

Diane

Thanks everyone for your
Thanks everyone for your advice, it is a difficult decision to make as the last thing you want to do is give yourself unnecessary radiation! Diane I thought that the PET scan can't pick up anything unless it is also 1cm?

Apparently the CA125 marker is accurate for mum (how they know this I have no idea) so at least that is something I guess. I asked what happens for those who the CA125 doesn't work and they just said physical examination - scary!

Mum was saying the other day (on a rather down day) that she didn't want to get the 3 month checkup at all because it was right before Christmas - I certainly didn't like that and convinced her otherwise! The current regime of chemo every week combined with radiation has been the hardest so far by a long shot. She handled the 4 rounds of carbo/taxol really well.

Because her USPC is stage 3C she is worried about a recurrence, as are we all, but at the same time most of the time she is positive that they have got it. She has completely changed her state of mind, started yoga and meditation, moved to the alkaline diet etc.

I know everyone seems to state that UPSC is a 'chronic' disease, but as everyone on this site knows there are people who are still NED years later. I think the statistics are around 50% chance of a cure for stage 3 USPC, so I certainly wouldn't say that it is a chronic disease.

Trying to stay positive and hoping that my mum is one of the 'lucky' ones

Tali x