UPSC - Any survivors greater than 5years?

Kaleena

Catmalogen said:

Hi All
Thank you all for comments on my discussion topic. I am very sensitive to the topic as well I should be, given that I too am like all on this site.. Surviving and getting on with it one day at a time. It's great to read so many comments from the UPSC group. It all points to the positive strong fighting bunch we are. Delighted to read that those of you with recurrance have been offered treatment and are doing well.

Even more enlightening to read is yes indeed life goes on and I am sure the ladies who are 5 years on and well, do not visit this site. !!

All the more reason to keep information and support positive and forwarding thinking on for the rest of us, as mentioned by many of you in discussion.

While reading discussions, I noted that some women are followed up with scans, CA125 markers and PAP... My medical team Scan (Cat 0r PET)every 6months, Tumour markers CA125 I am told are not true indicators of activity (unless you had bloods done prior to surgery). And PAP is only performed on women whose cervix is still intact. I had a TAH+BSO and vaginal vault brachytherapy, hence PAP contraindicated as vaginal cells (cervix removed) will already be changed by radiation. Has the group any comments?? Cat

I have gotten a CT Scan once
I have gotten a CT Scan once a year since my diagnosis in 2005 through 2011 until the insurance company changed the protocal and said unless it is medically necessary - so unless there are some type of symptoms, no more scans.

I still go every 6 months for follow up appointments. I get a PAP smear. I do not get a CA125 because it is not a marker for me.

In 2009 I did have PET scans, CT Scans, PET/CT and MRI for a possible recurrence which I eventually had surgery in 2010. (no further treatment needed except for PET scans every 6 months until my new insurance denied them).

Even though I had a Total Hysterectomy (tubes, ovaries, uterus, appendix, omentum, lymph nodes, etc.) I still get PAP every 6 months. (BTW - I also had brachytherapy)

nancibee

Kaleena said:

I have gotten a CT Scan once
I have gotten a CT Scan once a year since my diagnosis in 2005 through 2011 until the insurance company changed the protocal and said unless it is medically necessary - so unless there are some type of symptoms, no more scans.

I still go every 6 months for follow up appointments. I get a PAP smear. I do not get a CA125 because it is not a marker for me.

In 2009 I did have PET scans, CT Scans, PET/CT and MRI for a possible recurrence which I eventually had surgery in 2010. (no further treatment needed except for PET scans every 6 months until my new insurance denied them).

Even though I had a Total Hysterectomy (tubes, ovaries, uterus, appendix, omentum, lymph nodes, etc.) I still get PAP every 6 months. (BTW - I also had brachytherapy)

Ongoing follow up
I don't see my gyn oncologist until the beginning of December but I had my first after-treatment followup visit with my oncologist last week. He said I will get vaginal exams and PAPs going forward. I will get CT scans only if there are suspicious cells.

I asked him why CT scans as opposed to MRI or PET scans. He explained but I don't remember. I do remember that he said CT was best because you get more slices and views than an MRI. If anything does show up on a CT scan if I have one, I will most likely have to have an MRI because before treatment they found out with an MRI that I have benign hemangiomas on my liver that show up as spots on the CT scan. He also said that with a PET scan, anything less than one centimeter cannot be biopsied.

Kaiser follows evidence based guidelines for treatment. I checked and the NCCN evidence based guidelines for UPSC do say that performing CT scans does not have a positive outcome on survival. It kind of bothers me because even though recurrence is most likely to occur in the vaginal cuff, there is a chance that recurrence could be distant. I think it is ironic that they tell you not to view yourself as a statistic yet they base treatment on statistics.

I am going to discuss this further with my gyn oncologist in December. I trust her a great deal. I have also found Kaiser to be flexible when necessary but I am not sure this will be the case with an expensive scan.

txtrisha55

Catmalogen said:

Hi All
Thank you all for comments on my discussion topic. I am very sensitive to the topic as well I should be, given that I too am like all on this site.. Surviving and getting on with it one day at a time. It's great to read so many comments from the UPSC group. It all points to the positive strong fighting bunch we are. Delighted to read that those of you with recurrance have been offered treatment and are doing well.

Even more enlightening to read is yes indeed life goes on and I am sure the ladies who are 5 years on and well, do not visit this site. !!

All the more reason to keep information and support positive and forwarding thinking on for the rest of us, as mentioned by many of you in discussion.

While reading discussions, I noted that some women are followed up with scans, CA125 markers and PAP... My medical team Scan (Cat 0r PET)every 6months, Tumour markers CA125 I am told are not true indicators of activity (unless you had bloods done prior to surgery). And PAP is only performed on women whose cervix is still intact. I had a TAH+BSO and vaginal vault brachytherapy, hence PAP contraindicated as vaginal cells (cervix removed) will already be changed by radiation. Has the group any comments?? Cat

Not a UPSC member but MMMT member of the Uterine Cancers
I am 14 months out from last treatment on 22 August 2011. Since then I have had 3 month interval appoints with my gyn onc dr. She does ask for CA125 blood test. She also does CT scans every 3 -6 months. I had one in Sept2011, Dec 2011 then went to Jun 12. Just went to the dr in Aug and she wanted another ct scan because the radiologist who read the last ct scan said 1 node on the left side groin area was borderline in size. She did not know what that meant (she said in relation to what size) so I had another ct scan done at the end of Oct. The next radiologist did not even mention the nodes which made my dr upset so she kept asking for them to compare the two scans again and report on the differences in the scan. I finally got that report yesterday and everything is fine. The dr does do a physical exam every time I see her. Since there is nothing to PAP I will probably not have that done. She likes to do the scans, she said, because there is no way of knowing what is going on inside me or any symptoms that she can tell me to look for. A CT scan will tell her that. I think all on this site are amazing women with great friends and family supporting them. I include all in my prayers to give the strength they need to keep pushing through their treatments and living strong positive lives. trisha

nancibee

txtrisha55 said:

Not a UPSC member but MMMT member of the Uterine Cancers
I am 14 months out from last treatment on 22 August 2011. Since then I have had 3 month interval appoints with my gyn onc dr. She does ask for CA125 blood test. She also does CT scans every 3 -6 months. I had one in Sept2011, Dec 2011 then went to Jun 12. Just went to the dr in Aug and she wanted another ct scan because the radiologist who read the last ct scan said 1 node on the left side groin area was borderline in size. She did not know what that meant (she said in relation to what size) so I had another ct scan done at the end of Oct. The next radiologist did not even mention the nodes which made my dr upset so she kept asking for them to compare the two scans again and report on the differences in the scan. I finally got that report yesterday and everything is fine. The dr does do a physical exam every time I see her. Since there is nothing to PAP I will probably not have that done. She likes to do the scans, she said, because there is no way of knowing what is going on inside me or any symptoms that she can tell me to look for. A CT scan will tell her that. I think all on this site are amazing women with great friends and family supporting them. I include all in my prayers to give the strength they need to keep pushing through their treatments and living strong positive lives. trisha

Nothing to PAP
I have a friend who does not have cancer but had a hysterectomy with her uterus and cervix removed. She gets regular PAP smears. I will find out in December.

Catmalogen

nancibee said:

Nothing to PAP
I have a friend who does not have cancer but had a hysterectomy with her uterus and cervix removed. She gets regular PAP smears. I will find out in December.

PAP or not to PAP
Hello Sisters, I have read all your comments. Again let me remind you all I am a UPSC Survivor, and also a health professional. I am confused at some of the logic from the medical world.. when to PAP or not to PAP smear. Again I understand the logic explained to me that cells could be changed by brachytherapy and show a false positive and of course my cervix was removed... So why I wonder are some docs doing smears on women who have had brachytherapy and cervix removed? I will ask again from my team why they feel this is not an appropriate guide?
My oncologist does not request scans, (guess he, and this is only my opnion feels if recurrance, it will show up with sympthons and so be it !) Some say that repeative scans can lead to solid cancers.. However my Gynae team will scan if I moan about something..and my usual complaint is back pain and trunk oedema..(which they always tell me is related to menopause and lymphodema).. So the mistery of a world gold standard survillance for this cancer still troubles me!! So let us all stay strong and positive fellow sisters. BTW has anyone tried Essiac Tea ??? I hear good things about it, but not sure... ? Cat

Catmalogen

Kaleena said:

I have gotten a CT Scan once
I have gotten a CT Scan once a year since my diagnosis in 2005 through 2011 until the insurance company changed the protocal and said unless it is medically necessary - so unless there are some type of symptoms, no more scans.

I still go every 6 months for follow up appointments. I get a PAP smear. I do not get a CA125 because it is not a marker for me.

In 2009 I did have PET scans, CT Scans, PET/CT and MRI for a possible recurrence which I eventually had surgery in 2010. (no further treatment needed except for PET scans every 6 months until my new insurance denied them).

Even though I had a Total Hysterectomy (tubes, ovaries, uterus, appendix, omentum, lymph nodes, etc.) I still get PAP every 6 months. (BTW - I also had brachytherapy)

Hi Kaleena, Great to get
Hi Kaleena, Great to get your comments on this discussion. You are doing so well and 7years post diagnosis. What was your inital diagnosis (staging and treatment)? I figure you must have had cervix removed? Where was recurrance? I hope you are well again and no further chemo require. Stay strong. You can beat this. Cat.

sunflash

Catmalogen said:

PAP or not to PAP
Hello Sisters, I have read all your comments. Again let me remind you all I am a UPSC Survivor, and also a health professional. I am confused at some of the logic from the medical world.. when to PAP or not to PAP smear. Again I understand the logic explained to me that cells could be changed by brachytherapy and show a false positive and of course my cervix was removed... So why I wonder are some docs doing smears on women who have had brachytherapy and cervix removed? I will ask again from my team why they feel this is not an appropriate guide?
My oncologist does not request scans, (guess he, and this is only my opnion feels if recurrance, it will show up with sympthons and so be it !) Some say that repeative scans can lead to solid cancers.. However my Gynae team will scan if I moan about something..and my usual complaint is back pain and trunk oedema..(which they always tell me is related to menopause and lymphodema).. So the mistery of a world gold standard survillance for this cancer still troubles me!! So let us all stay strong and positive fellow sisters. BTW has anyone tried Essiac Tea ??? I hear good things about it, but not sure... ? Cat

I will be one year post
I will be one year post treatment November 10......a day I'll never forget! I get a vaginal pap smear with every visit (every 3 months) I haven't had a CA125 test since my last treatment as it was never elevated and probably not a good indicator for me. No scans either, as my doctor feels I would have symptoms before a recurrence would show up on a scan.
I had external radiation and brachytherapy 5 years ago when I had vaginal cancer......I know, lucky me! My paps have been clear, thank God!
As a matter of fact, the reason I had a hysterectomy in June 2011 was because abnormal endometrial cells were showing up in my paps. My doctor put my pap smears through pathology as if it was a biopsy, and the path report showed no sign of cancer. But the paps were enough to make her feel uneasy, and thus the hysterectomy.
My stage was 1A, and the cancer was less than 1/2 a centimeter. But it was cancer, and UPSC at that.
Soooooo, only one year out and so far so good. I'm feeling great, work out at the gym, and teach full time.
I consider myself blessed.

I pray regularly for everyone here.

nancibee

Catmalogen said:

PAP or not to PAP
Hello Sisters, I have read all your comments. Again let me remind you all I am a UPSC Survivor, and also a health professional. I am confused at some of the logic from the medical world.. when to PAP or not to PAP smear. Again I understand the logic explained to me that cells could be changed by brachytherapy and show a false positive and of course my cervix was removed... So why I wonder are some docs doing smears on women who have had brachytherapy and cervix removed? I will ask again from my team why they feel this is not an appropriate guide?
My oncologist does not request scans, (guess he, and this is only my opnion feels if recurrance, it will show up with sympthons and so be it !) Some say that repeative scans can lead to solid cancers.. However my Gynae team will scan if I moan about something..and my usual complaint is back pain and trunk oedema..(which they always tell me is related to menopause and lymphodema).. So the mistery of a world gold standard survillance for this cancer still troubles me!! So let us all stay strong and positive fellow sisters. BTW has anyone tried Essiac Tea ??? I hear good things about it, but not sure... ? Cat

Confused as Well
And since this is all new to me I am continually confused. Won't have any definitive answers on my gyn treatment until I see my gyn/oncologist on 12/6. Apparently, both my oncologist and gyn/oncologist surgeon will be seeing me on an ongoing basis. Gyn/oncologist does the vaginal exam and oncologist follows up to see how I am doing. Tomorrow I have a phone appointment with the nurse in radiation oncology to check up on me.

So far my oncologist just has a 10 minute conversation with me, asks me if I have questions or concerns, checks my abdomen and orders an monitors blood tests. I have to see him again in 3 months.

I am someone who rarely saw a physician prior to my cancer. I even went almost 3 years without seeing my neurologist for my MS because she kept refilling my prescription and I felt fine. So all of this attention is very new and not something I particularly enjoy. Oh well, I guess I am getting my money's worth from the expensive monthly insurance premiums I pay.

Ro10

Catmalogen said:

PAP or not to PAP
Hello Sisters, I have read all your comments. Again let me remind you all I am a UPSC Survivor, and also a health professional. I am confused at some of the logic from the medical world.. when to PAP or not to PAP smear. Again I understand the logic explained to me that cells could be changed by brachytherapy and show a false positive and of course my cervix was removed... So why I wonder are some docs doing smears on women who have had brachytherapy and cervix removed? I will ask again from my team why they feel this is not an appropriate guide?
My oncologist does not request scans, (guess he, and this is only my opnion feels if recurrance, it will show up with sympthons and so be it !) Some say that repeative scans can lead to solid cancers.. However my Gynae team will scan if I moan about something..and my usual complaint is back pain and trunk oedema..(which they always tell me is related to menopause and lymphodema).. So the mistery of a world gold standard survillance for this cancer still troubles me!! So let us all stay strong and positive fellow sisters. BTW has anyone tried Essiac Tea ??? I hear good things about it, but not sure... ? Cat

Cat
I don't want to burst your bubble, but I have never had any symptoms before diagnosis of stage 3-C UPSC, or with 2 recuuences. I am probable
Having a third recurrence, too. No symptoms at all. I had an abnormal PAP before diagnosis. No symptoms. Mt recurrences begin with CA 125 elevating. My gyn/ Ono says it is just a number when it elevates. I have a CAT scan about every 3 months to check for changes. My recurrences have always been with lymph node enlargement. But never have any symptoms.

I have expressed concern over the number of CAT scans I have had. My doctors tell me that the risk of the cancer growing is greater than the risk of the radiation from the CAT scans. So I go from there. Unfortunately my CA 125 begins to elevate as soon as I go off chemo. Last time it got to 3200 before changes occurred in the CAT scan. Right now it is in the 370's, but CAT. Scan is stable.

I agree we all need to stay strong and positive. Have not tried the Essiac tea. I do drink green tea. Good luck on your journey. In peace and caring.

nancibee

Ro10 said:

Cat
I don't want to burst your bubble, but I have never had any symptoms before diagnosis of stage 3-C UPSC, or with 2 recuuences. I am probable
Having a third recurrence, too. No symptoms at all. I had an abnormal PAP before diagnosis. No symptoms. Mt recurrences begin with CA 125 elevating. My gyn/ Ono says it is just a number when it elevates. I have a CAT scan about every 3 months to check for changes. My recurrences have always been with lymph node enlargement. But never have any symptoms.

I have expressed concern over the number of CAT scans I have had. My doctors tell me that the risk of the cancer growing is greater than the risk of the radiation from the CAT scans. So I go from there. Unfortunately my CA 125 begins to elevate as soon as I go off chemo. Last time it got to 3200 before changes occurred in the CAT scan. Right now it is in the 370's, but CAT. Scan is stable.

I agree we all need to stay strong and positive. Have not tried the Essiac tea. I do drink green tea. Good luck on your journey. In peace and caring.

CT Scan Radiation
I did not even think about radiation from CAT scans. Does anyone know if MRIs have negative effects? I know that it does not do much good to dwell on the "Why" with UPSC but I have had so many MRI scans. I participated in a clinical trial for my MS medication and I had to have scans every 6 months. I also had them when I moved around the country and changed neurorlogists. They always wanted a new scan.

Catmalogen

nancibee said:

CT Scan Radiation
I did not even think about radiation from CAT scans. Does anyone know if MRIs have negative effects? I know that it does not do much good to dwell on the "Why" with UPSC but I have had so many MRI scans. I participated in a clinical trial for my MS medication and I had to have scans every 6 months. I also had them when I moved around the country and changed neurorlogists. They always wanted a new scan.

Follow ups!
I now very confused given all the info! Reality is I don't worry about scans.. if I need one then best to have it. Not sure what size tumours have to be to be seen on a scan, but I figure it depends on who is reading scans. Going to have a major chat with my Gyane/Oncology team about having repeat PAP smears. As I see this is relevant now from reading many of your comments. So lets not get hung up on scans hey !
At end of day I think physical exam very important as they checking for node enlargement esp in the neck/groin area. I have a surgeon friend just diagnosed with renal cancer.. we both going to try the Essiac Tea !!Stay positive all.. I back in hospital next week for breast lump review. Fingers crossed! Cat

pjba11

6 years
Just passed the 6 year mark dx on my 54th b-day UPSC Chemo Radiation and Brachy Just got through my 60th birthday and am now enjoying a great granddaughter. My youngest daughter is 15.. Staying busy helping farm about 1600 acres and cattle with my husband. I am also a Real Estate Broker/Owner and now have reached the level of Silver in my Young Living Essential Oils business. I use essiac tea Young Living oils and suppliments. Feel good. My best to all of you sisters on this board. If the Lord leads us to it He can get us through it. Abundant blessings. Pjba

Pat51

I Am A UPSC Sister
Hi,

I am a UPSC sister. I was diagnosed in Feb, 2011. I was a stage 1B grade 3. I had surgery, 6 rounds of carbo/taxatere and 3 brachytherpy. I have had a couple of scans since finishing treatment and at this time I am NED....no recurrences (THANK GOD). I have blood work, CA125, pelvic exam and oncology appointments every 3 months. I have just graduated to PAPs being done every 6 months instead of every 3 months. I do still follow this board, but do not post too often. I think that our chances of recurrence decrease after passing the two year mark. I am halfway there and hope to make it many, many more years!! May God bless each and every one of us as we make this journey!

Pat

NJZ62

lkchapman said:

vaginal pap and CA125
My doc at anderson does a vaginal pap and ca125 at every visit. Its just protocol there I suppose.

I have endometrial adenocarcinoma, metastatic.

I had Pap smears every 3 months after a TAH. My surgical oncologist said that because there was nothing but a "Vaginal cuff", the Pap smear works to show any endometrial cells lurking (where there should be none.) I also had 3 brachy therapy radiation treatments.

My Paps were always fine, for 20 mos., then Boom - 2 Cat scans 4 mos. apart showed nodes in liver,lung and omentum.

I have done 3 rounds of carbo taxol, and my CA125 is nearly normal after being in the 300s.

This last treatment was a bear - previously I only had bad symptoms on day 3 & 4 which were always Sat & Sun, which worked out well because I am working.

But...both my oncologists are pleased with my progress so far, which makes it all worth it.

Tentoumushi

UPSC 9 years and counting

I was diagnosed with UPSC 7/2004.  I had surgery, radiation & chemo. At my 4 month checkup after my last treatment my cancer had returned.  I have had more radiation & chemo.  Received severe burns from radiation that is causing problems now and I have not been given the wall clear" from my oncologist.

Ro10

Tentoumushi said:

UPSC 9 years and counting

I was diagnosed with UPSC 7/2004.  I had surgery, radiation & chemo. At my 4 month checkup after my last treatment my cancer had returned.  I have had more radiation & chemo.  Received severe burns from radiation that is causing problems now and I have not been given the wall clear" from my oncologist.

Tentourmushi Welcome and congratulations

Welcome to the site.  Congratulations on being a 9 year survivor.  I am curios what Stage you were at diagnosis.  Sorry to hear about your problems with radiation.  It must be very uncomfortable.  I had 28 IMRT radiation treatments and the a28 hour internal radiation treatment.  They encouraged me to have a full bladder before each radiation treatment.  That pushed the colon away from the area getting radiation.  Luckily I had no bowel issues during treatment or after.  That was in 2009.

i an so impressed and encouraged by your long survival time.  Thanks for posting.  I was diagnosed with UPSC Stage 3, and have 2 recurrences and will need chemo again In the near future.  Keep hanging in there.

Ro10

Tentoumushi said:

UPSC 9 years and counting

I was diagnosed with UPSC 7/2004.  I had surgery, radiation & chemo. At my 4 month checkup after my last treatment my cancer had returned.  I have had more radiation & chemo.  Received severe burns from radiation that is causing problems now and I have not been given the wall clear" from my oncologist.

Tentourmushi Welcome and congratulations

Double post.

NoTimeForCancer

Tentoumushi said:

UPSC 9 years and counting

I was diagnosed with UPSC 7/2004.  I had surgery, radiation & chemo. At my 4 month checkup after my last treatment my cancer had returned.  I have had more radiation & chemo.  Received severe burns from radiation that is causing problems now and I have not been given the wall clear" from my oncologist.

Thank you!

While I wish I had found this site much sooner than I did, I only found it recently after I finished all treatment in December 2012, I tend to agree with what was said earlier about not coming back to this site because they have moved on, not necessarily because of a sad outcome.  

I have to be more than this horrible disease.  I know there are so many sisters out there now, and you are all in my prayers, and I hope those who find this when we no longer come to this site, find it as helpful as I did. 

I plan on being around for a very long time and being a happy, little old lady someday.  I get scared sometimes and worry, but I have to stop thinking that way because it does me no good.  As my chemo nurse said to me, "Go live your life!"and she is right.

Never, never, never give up.

 

 

MTheresa

UPSC

I had my hysterectomy Feb 7, 2013 and meet with my surgeon Wed. Mar 27th and then the radiation oncologist the same day.  The 29th with the chemo doctor and am assuming chemo treatments will start next week (April).  One thing this site has taught me is that it's important for me to stay connected for everyone else.  I was fortunate to have the surgery at Stage 1, although because of the type of cell, grade 3.  All my biopsies were negative.  I was spotting and we tried to find out why for 9 months!!  Seems crazy that it took so long--in fact the doctor who did the endometrial biopsy, 2 days before the diagnosis, said she thought it was just fragile vaginal lining.  Every test I had before then came back negative.  I thought I just had an aggravating little problem.  I'm so glad I kept pursuing an answer.

I know I have no guarantees, but many of you have harder diagnoses and I know the worry has to be more.  I'm kind of going around like Pollyanna while I'm getting ready for this treatment.  (An informed Pollyanna!!)  It feels good to have all of you as support and I appreciate the effort it takes to post when you're scared!

marieinlv

MTheresa said:

UPSC

I had my hysterectomy Feb 7, 2013 and meet with my surgeon Wed. Mar 27th and then the radiation oncologist the same day.  The 29th with the chemo doctor and am assuming chemo treatments will start next week (April).  One thing this site has taught me is that it's important for me to stay connected for everyone else.  I was fortunate to have the surgery at Stage 1, although because of the type of cell, grade 3.  All my biopsies were negative.  I was spotting and we tried to find out why for 9 months!!  Seems crazy that it took so long--in fact the doctor who did the endometrial biopsy, 2 days before the diagnosis, said she thought it was just fragile vaginal lining.  Every test I had before then came back negative.  I thought I just had an aggravating little problem.  I'm so glad I kept pursuing an answer.

I know I have no guarantees, but many of you have harder diagnoses and I know the worry has to be more.  I'm kind of going around like Pollyanna while I'm getting ready for this treatment.  (An informed Pollyanna!!)  It feels good to have all of you as support and I appreciate the effort it takes to post when you're scared!

UPSC

 

My DX of UPSC stage IV, was 11/10, i had surgery and 6 rounds of carbo/taxol. My ca-125 was a good marker for me, it was about 1300, then finally to 4 or 5 . I do have paps and ca-125 ck, no scans for quite awhile now, maybe 7mos? Pretty sure we all go through the depression at some degree for different times. I'm getting a grip on my imagination, I feel good, the adhesion discomfort is definately not worth mentioning anymore. I do still have the port, but there is less and less evidence of cancer all the time. I'm thrilled to hear about the Ladies that are getting better, and staying better longer. I hope that each new Woman that explores this site will find our words of experience and will find that all the phases are normal. All the feelings are ok in moderation, we will get through with all the TLC from our Friends, Family and many Professional Folks that help us.