my journey

LA123

Hello there. I have been following this forum for a few months now, and finally managed to set up an account (due to internet safety controls at work, confirmation emails kept getting rejected). I have learned so much from all your postings, and I am grateful for the support and hope it offers those that are sharing in this life changing diagnosis.  A bit of my background. After an abnormal PAP last March, and a follow up biopsy in April, I was diagnosed with utering papillary serous cancer the day after Mother's day.  I started researching into this disease, and much to my dismay, I learned how terrible this cancer can be, the high level of advance stage diagnosis and recurrences, the fact that a lack of symptoms means nothing at the time of diagnosis, I had no symptoms, and had even had a perfectly normal pelvic ultrasound as part of my annual exams.  I had my first meeting with an oncologist the first week in June and was operated on two weeks later.  I had a laparoscopic radical hysterectomy, 39 nodes removed (pelvic and para-aortic lymphadenectomy), appendectomy, uterus/fallopian tubes/ovaries removed and omentectomy. The operation took 4 hours, and I fully recovered and went back to work in about a week.  Six week after the staging operation, I got the pathology results. The cancer was gone, it had simply vanished from the uterus. The pathology report reads over and over again, "negative for malignancy" after each tissue was tested.  They went back and reconfirmed the original diagnosis, uterine serous carcinoma, aggressive histology, strongly positive for tumor markers P53 and P16, and also did lab testing to confirm the biopsy and hysterectomy specimen came from the same person, me (it was confirmed by DNA tests).  In other words, it was aggessive cancer, it  was me, but no cancer was found when they operated.  I was told there was no need to treat me, as studies have shown that patients with cancer limited to biopsy, but absent at hysterectomy do not need adjuvant treatment.  They have followed up the few cases that have come up in different studies and recommnend no treatment based on medium and long term follow up studies.  Has anyone heard of this scenario before?  I believe God had his Hand in this, I am a mom to two elementary school aged children and I firmly believe our prayers were answered. My mom died of pancreatic cancer only 8 years ago, so I know cancer does run in my family, and I know how terrible it can be. I am so thankful about the outcome, but was wondering if there is anyone else out there that has had a similar situation, or knows about someone. This cancer is so rare, and my outcome even more rare, so it is hard to find anyone with first hand information. Studies are so general, full of statistics, and as I have learned in this forum, and through my own experience, "we are a statistic of one". 

Best wishes to all in this journey, someone said to me, cancer is not terminal, life is terminal.  I am so aware of it now, and live each day as it was my last. I dont ever want to forget the lessons I have learned in the last six months, I believe I am wiser and more compassionate now, it was a bit of shock therapy, sometimes life gets so busy, we forget to live.

Thankful in Calgary.

Abbycat2

This is remarkable, LA123

And baffling. I have never heard of such a situation. Uterine Papilliary Serous is an aggressive cancer that usually is treated, following surgery, with chemo/radiation- even with stage 1. The pathology report is only as good as the pathologist who analyzes the tissues. I suggest that you have the biopsy tissue and the surgery tissue analysed by another pathologist. You can't bargain with your life over an incorrect report. Have you had a cat scan and/or pet scan? That may be indicated. Let me tell you, that when my dearest friend was diagnosed with a grade 3 breast cancer, I became an "expert"  in order to help her. I remember reading that a woman could have NO SIGNS OF BREAST Ca and yet she could have metastatic cancer, cancer that has spread regionally to the bone, etc.. If I was in your situation, I'd get another opinion.

 

Warm Wishes,

Cathy

LA123

Thank you Abbycat2

I agree that my case is baffling, I will ask my oncologist to have my results analyzed by another hospital. I would not be surprised if they already did that, it took them quite a while to get back to me on my results because they were so unexpected, so they had to do their own due diligence and ensure that there had been no mistakes, hence the DNA testing and results review. But it does not hurt to ask.  By the way, I was treated at the Tom Baker Cancer Centre here in Calgary, it is a vey good hospital that specializes in cancer, and my oncologist is the director of the gynecologic oncology program there, I have nothing but  great things to say about the team there, they have been amazing. And to top it off, I never saw a bill, or had to deal with insurance companies, it is all covered by Canadian medicare.  It is hard enough dealing with a cancer diagnosis, my heart goes out to those that have the headaches of dealing with admistrative/elegibility issues on top of that.  I did not have a CT scan as my operation got bumped up and by the time my CT scan appointment was booked, I had just had my operation. I think that since the gold standard for staging is the radical histerectomy, and it came back completely clean, there would be no need to subject me to CT scans, but it would still be good to have it, just as a baseline.  To be honest, my pathology review appointment was so surprisingly positive meeting, that there were so many questions I have now that simply did not occur to me at that moment. I plan to book another appointment to ask all my questions, and the second opinion on the pathology report, as well as the CT scan.  Thank you for your advise. I will try to post an update when I have more infomation on my case.

Susan in Lake City

LA123 said:

Thank you Abbycat2

I agree that my case is baffling, I will ask my oncologist to have my results analyzed by another hospital. I would not be surprised if they already did that, it took them quite a while to get back to me on my results because they were so unexpected, so they had to do their own due diligence and ensure that there had been no mistakes, hence the DNA testing and results review. But it does not hurt to ask.  By the way, I was treated at the Tom Baker Cancer Centre here in Calgary, it is a vey good hospital that specializes in cancer, and my oncologist is the director of the gynecologic oncology program there, I have nothing but  great things to say about the team there, they have been amazing. And to top it off, I never saw a bill, or had to deal with insurance companies, it is all covered by Canadian medicare.  It is hard enough dealing with a cancer diagnosis, my heart goes out to those that have the headaches of dealing with admistrative/elegibility issues on top of that.  I did not have a CT scan as my operation got bumped up and by the time my CT scan appointment was booked, I had just had my operation. I think that since the gold standard for staging is the radical histerectomy, and it came back completely clean, there would be no need to subject me to CT scans, but it would still be good to have it, just as a baseline.  To be honest, my pathology review appointment was so surprisingly positive meeting, that there were so many questions I have now that simply did not occur to me at that moment. I plan to book another appointment to ask all my questions, and the second opinion on the pathology report, as well as the CT scan.  Thank you for your advise. I will try to post an update when I have more infomation on my case.

Join in on comments

After a routine pap smear I was called in and told I had UPSC.  About one week after that call I had a total hysterectomy and started radiation and chemo which lasted about three to four months.  I had absolutely no symptoms.  I was told it was stage II and it did not spread to the lymph nodes (a few were removed to check).  This all happened in February of 2008.  I have been cancer free ever since my last chemo treatment in June of 2008.  It took about four years for my hair to finally grow back and now it is very very thin.  I do have neuropathy in both foot feet due to the agressive chemo treatments, I'm told. And about a year and a half after treatment, I developed lymphodema in my left leg from the removal of lymph nodes, but besides those few things I am cancer free and 66 years old.  I thank God for my recovery and the fact that I had just gotten health insurance from my employer when I made the appointment for the pap smear.  But for all of you out there, it has been seven years and no cancer and I was also told it is a very aggressive and rare form of cancer. 

ConnieSW

Susan in Lake City said:

Join in on comments

After a routine pap smear I was called in and told I had UPSC.  About one week after that call I had a total hysterectomy and started radiation and chemo which lasted about three to four months.  I had absolutely no symptoms.  I was told it was stage II and it did not spread to the lymph nodes (a few were removed to check).  This all happened in February of 2008.  I have been cancer free ever since my last chemo treatment in June of 2008.  It took about four years for my hair to finally grow back and now it is very very thin.  I do have neuropathy in both foot feet due to the agressive chemo treatments, I'm told. And about a year and a half after treatment, I developed lymphodema in my left leg from the removal of lymph nodes, but besides those few things I am cancer free and 66 years old.  I thank God for my recovery and the fact that I had just gotten health insurance from my employer when I made the appointment for the pap smear.  But for all of you out there, it has been seven years and no cancer and I was also told it is a very aggressive and rare form of cancer. 

Thank you

For the encouragement and congratulations on years of NED.  I also appreciate your mentioning that you were diagnosed through a Pap smear.  I was, too, as were a number of posters here.  We have been repeatedly told that paps are only for cervical cancer but that is obviously not the case.  I don't care what the statistics of probability are.  I'm a case of early diagnosis because of that Pap smear and my life means a lot to me.  Even though there is not supposed to be a hereditary component for UPSC, my daughter's gyn has told her he'll be doing her pap yearly and watching her very closely.

NoTimeForCancer

LA123 - I am thrilled for you

LA123 - I am thrilled for you and ask that you remember all the ladies who suffer from all the "below the belt" cancers in your prayers.  

I have a hard time getting pink shoved in my face the month of October because I just want to scream.  I only wish that someday we could get some attention for our cancers which are often caught very late because there is no good 'tool' to diagnose it early and too many women die of these cancers. 

Gyn's and gyn onc's will tell you a PAP is a tool to detect cervical cancer, and it may detect atypical cells that will lead to an endometrial biopsy or D&C that is where they find UPSC, MMMT, etc...but there really is not diagnostic tool for uterine or ovarian cancer which is why they are often detected late and we lose so many woman to these terrible diseases.

TeddyandBears_Mom

NoTimeForCancer said:

LA123 - I am thrilled for you

LA123 - I am thrilled for you and ask that you remember all the ladies who suffer from all the "below the belt" cancers in your prayers.  

I have a hard time getting pink shoved in my face the month of October because I just want to scream.  I only wish that someday we could get some attention for our cancers which are often caught very late because there is no good 'tool' to diagnose it early and too many women die of these cancers. 

Gyn's and gyn onc's will tell you a PAP is a tool to detect cervical cancer, and it may detect atypical cells that will lead to an endometrial biopsy or D&C that is where they find UPSC, MMMT, etc...but there really is not diagnostic tool for uterine or ovarian cancer which is why they are often detected late and we lose so many woman to these terrible diseases.

Screenings

I wish a vaginal ultrasound was part of the 'standard screening' just like a pap is.  It would certainly be a step in the right direction!

Cucu me

Susan in Lake City said:

Join in on comments

After a routine pap smear I was called in and told I had UPSC.  About one week after that call I had a total hysterectomy and started radiation and chemo which lasted about three to four months.  I had absolutely no symptoms.  I was told it was stage II and it did not spread to the lymph nodes (a few were removed to check).  This all happened in February of 2008.  I have been cancer free ever since my last chemo treatment in June of 2008.  It took about four years for my hair to finally grow back and now it is very very thin.  I do have neuropathy in both foot feet due to the agressive chemo treatments, I'm told. And about a year and a half after treatment, I developed lymphodema in my left leg from the removal of lymph nodes, but besides those few things I am cancer free and 66 years old.  I thank God for my recovery and the fact that I had just gotten health insurance from my employer when I made the appointment for the pap smear.  But for all of you out there, it has been seven years and no cancer and I was also told it is a very aggressive and rare form of cancer. 

Very happy for you Susan

I wish you never to deal anymore with this beast.

Hopeful162

Question for LA123

Are you now in "surveillance" (as they say), that is, are you having regular follow-up pelvic/general checkups every three months? Even with NED, no evidence of disease, that is the usual routine for any diagnosis of UPSC.

I was given a stage 1, grade 3 diagnosis after surgery with the UPSC found encased in a polyp in my uterus, and completely removed along with nodes and everything else, which was negative, but I still got the recommendation to have three rounds of chemo and must continue to be checked out by my oncologist for five years! Better to be safe than sorry so the checkups are okay with me to keep a tight watch.

cared1027

Similar Journey LA123

LA123, my story is similar.  The difference is I was diagnosed via a D&C to remove several polyps.  I had some pelvic
pain and my gyn suggested a transvaginal ultrusound which revealed polyps and a thickened endometrial stripe.
The D&C tissue samples revealed a Grade 3 malignancy with Clear Cell components. 
 So although not UPSC, aggresive and rare.   I was referred to Moffitt Cancer Center and told my cancer was aggresive and
the gyn/onc recomended a CT scan to ensure other organs were not as yet effected. If all clear, I would have surgery the
next week, which I did. Based on everything I had read and heard I had prepared myself for needing additional treatment.
Much to all of our surprise all the tissue samples came back with no residual malignancy. 

I questioned weather the original diagnosis was correct and again the tissue had already been double check via the Moffitt
ragioligist as the D&C was done at a different hospital.  Everything checked out and my gyn/onc agreed with the original diagnosis
of high grade malignancy.

My Dr said the outcome is rare but he had seen it once before.  He met with the cancer board and they recomended
surveliance with no additional treatment.  This was April 2012.  I was on 3 month follow-up for 2 years and now on 6 mo
until I reach 5 years NED.  So far so good! 

LA123

Susan in Lake City said:

Join in on comments

After a routine pap smear I was called in and told I had UPSC.  About one week after that call I had a total hysterectomy and started radiation and chemo which lasted about three to four months.  I had absolutely no symptoms.  I was told it was stage II and it did not spread to the lymph nodes (a few were removed to check).  This all happened in February of 2008.  I have been cancer free ever since my last chemo treatment in June of 2008.  It took about four years for my hair to finally grow back and now it is very very thin.  I do have neuropathy in both foot feet due to the agressive chemo treatments, I'm told. And about a year and a half after treatment, I developed lymphodema in my left leg from the removal of lymph nodes, but besides those few things I am cancer free and 66 years old.  I thank God for my recovery and the fact that I had just gotten health insurance from my employer when I made the appointment for the pap smear.  But for all of you out there, it has been seven years and no cancer and I was also told it is a very aggressive and rare form of cancer. 

Thank you ALL for your replies!!

Things got a bit crazy at work, so I had not checked the postings, but I am so happy to see so much feedback, I will try to reply to all here:

Susan in Lake City: That is wonderful news! Hearing positive stories help us so much in my own journeys. I am so thankful to all the brave ladies posting here, it is so hard to find information on this rare cancer, I must admit I had to become my own specialist, even bought medical journals and reports on it, anything to shed some light on this disease and fight the good fight. 

No Time for Cancer, thank you for your kind words, and you can be sure I will remember the below the belt cancer ladies in my prayers, I set up a "war room" prayer place in my closet, even before watching the movie in theaters (the one just released this past September).   and I agree that this cancer gets absolutely no attention, what I have learned I learned here and doing my own research, I am trying to raise awareness in my circle, some people tell me they think I am brave for being so candid about my journey, (I spare no details about the aggressivity of this cancer, and the lack of symptoms) but I wear by cancer survivor badge with honor.  Every day, we are survivors.  I was also diagnosed as a result of an abnormal PAP, which led to a biopsy.  Strangely enough, I had had a pelvic and transvaginal ultrasound  (to monitor my adenomyosis, an benign condition I had) showing all was good with my uterus just weeks before the biopsy, this cancer is tricky! Menopausal women have symptoms (abnormal bleeding), but pre and peri menopausal women do not (my  case), so the PAP is the only line of defense, and even then, I read that not all UPSC sufferers have abnormal PAPS.  If anything, it shows that at a minimum, all women should have their PAP each year. 

Hopeful162, I am having checkups by my family doctor, not the cancer hospital, and that is strange to me, that is the reason I opened up this thread to see what others experience with this outcome had been and bring it up with my doctors. I was totally expecting to start chemotherapy/radiation in August, as I know that is standard of care even with low stages of this aggressive cancer, but was told none was needed. I am believing in a higher power in this, that is where I get my peace, otherwise it is enough to go nuts thinking in the what-ifs. 

Cared1027, I am so glad to hear that this happened 3 years ago for you, and all is good, 3 month follow up for 2 years and then 6 month follow ups until 5 years sounds reasonable. I will bring it up with my doctors here. Thank you so much for sharing this information with me.

Lots of hugs and best wishes to all, it is amazing the strength I see in all of you, it is inspiring!. 

 

 

LA123

TeddyandBears_Mom said:

Screenings

I wish a vaginal ultrasound was part of the 'standard screening' just like a pap is.  It would certainly be a step in the right direction!

vaginal ultrasounds..

I had an vaginal ultrasound weeks before my UPSC biopsy diagnosis, the ultrasound came back clean, so unfortunately this cancer is not caught early via ultrasound, I think the PAP is perhaps the only tool available that sometimes, but not always indicates abnormalilty. I do hope they eventually develop some other way to catch it early.

LA123

cared1027 said:

Similar Journey LA123

LA123, my story is similar.  The difference is I was diagnosed via a D&C to remove several polyps.  I had some pelvic
pain and my gyn suggested a transvaginal ultrusound which revealed polyps and a thickened endometrial stripe.
The D&C tissue samples revealed a Grade 3 malignancy with Clear Cell components. 
 So although not UPSC, aggresive and rare.   I was referred to Moffitt Cancer Center and told my cancer was aggresive and
the gyn/onc recomended a CT scan to ensure other organs were not as yet effected. If all clear, I would have surgery the
next week, which I did. Based on everything I had read and heard I had prepared myself for needing additional treatment.
Much to all of our surprise all the tissue samples came back with no residual malignancy. 

I questioned weather the original diagnosis was correct and again the tissue had already been double check via the Moffitt
ragioligist as the D&C was done at a different hospital.  Everything checked out and my gyn/onc agreed with the original diagnosis
of high grade malignancy.

My Dr said the outcome is rare but he had seen it once before.  He met with the cancer board and they recomended
surveliance with no additional treatment.  This was April 2012.  I was on 3 month follow-up for 2 years and now on 6 mo
until I reach 5 years NED.  So far so good! 

thank you!

I guess I just learned that I can reply to postings individually, LOL. I replied to you on an earlier one to Susan. But THANK YOU so much for sharing your details on this rare situation, I will make sure to bring it up with my doctors that close surveillance makes sense given the aggressive nature of this cancer.

LA123

Hopeful162 said:

Question for LA123

Are you now in "surveillance" (as they say), that is, are you having regular follow-up pelvic/general checkups every three months? Even with NED, no evidence of disease, that is the usual routine for any diagnosis of UPSC.

I was given a stage 1, grade 3 diagnosis after surgery with the UPSC found encased in a polyp in my uterus, and completely removed along with nodes and everything else, which was negative, but I still got the recommendation to have three rounds of chemo and must continue to be checked out by my oncologist for five years! Better to be safe than sorry so the checkups are okay with me to keep a tight watch.

glad to hear you were caught early!

I posted a response to you in my reply to Susan, (trying to figure out the functionalities of this blog.. sorry about being repetitve :0)  But I agree with you that close follow up is absolutely important, which is why I was puzzled I am only expected be followed up by my family doctor (normal yearly physical exams) so I want to bring it up with my oncologist that I shoudl still be closely monitored.  Thank you for your response..

LA123

NoTimeForCancer said:

LA123 - I am thrilled for you

LA123 - I am thrilled for you and ask that you remember all the ladies who suffer from all the "below the belt" cancers in your prayers.  

I have a hard time getting pink shoved in my face the month of October because I just want to scream.  I only wish that someday we could get some attention for our cancers which are often caught very late because there is no good 'tool' to diagnose it early and too many women die of these cancers. 

Gyn's and gyn onc's will tell you a PAP is a tool to detect cervical cancer, and it may detect atypical cells that will lead to an endometrial biopsy or D&C that is where they find UPSC, MMMT, etc...but there really is not diagnostic tool for uterine or ovarian cancer which is why they are often detected late and we lose so many woman to these terrible diseases.

I agree!

No time for cancer (great name! tha's exaclty how I felt when I was diagnosed) I responded to you in my reply to Susan (sorry I did not know I can reply individually),  Breast cancer has come such a long way, survival rates are high now,  I only wish uterine cancer got more attention, especially the aggressive subtypes, it is a shame that so many people ignore the facts and only learn about symptoms when it is too late.  In the meantime, I strive to raise awareness in my circle of family and friends. 

Best wishes to you and to all ladies fighting this dreadful disease.   

LA123

cared1027 said:

Similar Journey LA123

LA123, my story is similar.  The difference is I was diagnosed via a D&C to remove several polyps.  I had some pelvic
pain and my gyn suggested a transvaginal ultrusound which revealed polyps and a thickened endometrial stripe.
The D&C tissue samples revealed a Grade 3 malignancy with Clear Cell components. 
 So although not UPSC, aggresive and rare.   I was referred to Moffitt Cancer Center and told my cancer was aggresive and
the gyn/onc recomended a CT scan to ensure other organs were not as yet effected. If all clear, I would have surgery the
next week, which I did. Based on everything I had read and heard I had prepared myself for needing additional treatment.
Much to all of our surprise all the tissue samples came back with no residual malignancy. 

I questioned weather the original diagnosis was correct and again the tissue had already been double check via the Moffitt
ragioligist as the D&C was done at a different hospital.  Everything checked out and my gyn/onc agreed with the original diagnosis
of high grade malignancy.

My Dr said the outcome is rare but he had seen it once before.  He met with the cancer board and they recomended
surveliance with no additional treatment.  This was April 2012.  I was on 3 month follow-up for 2 years and now on 6 mo
until I reach 5 years NED.  So far so good! 

One question on type of surgery you had

Cared1027, thanks again for sharing your own experience with me, it was nice to hear from someone else who is in a similar situation as me, not only is this cancer rare, but our outcome evem more rare.  I  have one more question for you, if it's ok to ask.  I had a radical hysterectomy (uterus+fallopian tubes+ovaries),  apendectomy, pelvic and para-aortic lymphadenectomy (39 lymph nodes in total) and omentectomy.  Was you operation as extensive as mine? I am thinking my doctor's response to my question on a closer follow up routine may be that people who for whatever reason did not have an extensive staging operation may need more follow up than someone who had the full and extensive staging version.  Was your staging operation as extensive as mine? Thanks in advance for your response!

EZLiving66

ConnieSW said:

Thank you

For the encouragement and congratulations on years of NED.  I also appreciate your mentioning that you were diagnosed through a Pap smear.  I was, too, as were a number of posters here.  We have been repeatedly told that paps are only for cervical cancer but that is obviously not the case.  I don't care what the statistics of probability are.  I'm a case of early diagnosis because of that Pap smear and my life means a lot to me.  Even though there is not supposed to be a hereditary component for UPSC, my daughter's gyn has told her he'll be doing her pap yearly and watching her very closely.

PAP Questions

My PAP, done a week before my biospy, came back negative although my UPSC had spread to my cervix.  I found this very strange.  I will ask my doctor more about it next time I see him but just glad my doctor referred me to a gyno who did the biopsy.  I start chemo next week even though my CT scans no signs of spreading.  

EZLiving66

Wonderful news!!

I had a friend who was diagnosed with breast cancer after a needle biospy.  When they removed the lump there was absolutely no sign of cancer.  After checking and rechecking the test results, they told her she was cured although they will watch her carefully because of breast cancer in the family.

I have sooooo happy for you!!

Eldri

EZLiving66

cared1027 said:

Similar Journey LA123

LA123, my story is similar.  The difference is I was diagnosed via a D&C to remove several polyps.  I had some pelvic
pain and my gyn suggested a transvaginal ultrusound which revealed polyps and a thickened endometrial stripe.
The D&C tissue samples revealed a Grade 3 malignancy with Clear Cell components. 
 So although not UPSC, aggresive and rare.   I was referred to Moffitt Cancer Center and told my cancer was aggresive and
the gyn/onc recomended a CT scan to ensure other organs were not as yet effected. If all clear, I would have surgery the
next week, which I did. Based on everything I had read and heard I had prepared myself for needing additional treatment.
Much to all of our surprise all the tissue samples came back with no residual malignancy. 

I questioned weather the original diagnosis was correct and again the tissue had already been double check via the Moffitt
ragioligist as the D&C was done at a different hospital.  Everything checked out and my gyn/onc agreed with the original diagnosis
of high grade malignancy.

My Dr said the outcome is rare but he had seen it once before.  He met with the cancer board and they recomended
surveliance with no additional treatment.  This was April 2012.  I was on 3 month follow-up for 2 years and now on 6 mo
until I reach 5 years NED.  So far so good! 

I love this!

After reading so many frightening stories of reoccurence I love reading a story like this.  My doctor told me without further treatment (chemo) I had a 50/50 chance of being cancer-free after five years but it went up to 80% if I had chemo.  I chose the chemo and start next week but maybe because what I'm reading is old, survival and cure rates are becoming higher??

Take care,

Eldri

cared1027

Your question LA123

Yes I did have a radical hysterectomy as you described with removal of pelvic lymph nodes (can't remember how many), pelvic washings but did not have periaortic lymphadenectomy due to some periaortic visualizatin issues during the surgery that were unique to me, something about a short mesentery.  He said it would have been very challenging and he did not think the risk was worth taking based on his experience.  So, I believe the follow-up would have been recomended regardless, based on the high grade cancer found during D&C, even though there was none found during the hysterectomy. 

 

 

 

 

 

 

 

LA123

Thank you!

Thank you for this information, it is very helful. best wishes to you!