Papillary Serous

3958

My mom was just diagnosed with Papillary Serous Grade 3 Endometrial Cancer 2 days ago. She is 72 years old and has had vaginal bleeding for the last few months on and off. She had a D&C 2 weeks ago and they removed what the doctor referred to as "tons of polyps" but she said none of them appeared to be cancerous. My 4 sisters and I were shocked when we went in a few days later to hear they did find cancer. Then we were referred to a cancer doctor and told it was this rare form of aggressive cancer. Our heads are spinning. We are so scared. I really need to hear from someone/

Michaelynn

I am stage 1 grade 3
I was diagnosed in February 2010. Had complete hysterectomy in March. I had radiation to the vaginal cuff 3 times in May. I then started chemo carbo/taxol in June. I went every 3 weeks for 6 rounds of chemo. I am guessing your mothers treatment will be much the same as long as her health is good otherwise. I have had 1 cat scan and 2 lung xrays since my treatment ended.
Just about everyone has different side effects. I had some nausea but had meds for it. I also had lots of bone pain. I was not to tired most of the time. I did lose all my hair eyebrows and eyelashes 2 weeks after the first chemo treatment. Had my last treatment in September and by April had a full head of hair again. You do a lot of crying as your emotions are all over the place and the fear of the unknown will drive you crazy but you come to terms with it and deal with it one day at a time. if you have any questions come back and ask them. There are a lot of good women on the board that have knowledge of just about any subject that might arise. My advice would be to wait until after the hysterectomy when you get your stage number
as that determines how advanced the cancer is before you worry about any treatment that might occur down the road. Just worry about the surgery coming up right now.

Lynn

Fayard

Michaelynn said:

I am stage 1 grade 3
I was diagnosed in February 2010. Had complete hysterectomy in March. I had radiation to the vaginal cuff 3 times in May. I then started chemo carbo/taxol in June. I went every 3 weeks for 6 rounds of chemo. I am guessing your mothers treatment will be much the same as long as her health is good otherwise. I have had 1 cat scan and 2 lung xrays since my treatment ended.
Just about everyone has different side effects. I had some nausea but had meds for it. I also had lots of bone pain. I was not to tired most of the time. I did lose all my hair eyebrows and eyelashes 2 weeks after the first chemo treatment. Had my last treatment in September and by April had a full head of hair again. You do a lot of crying as your emotions are all over the place and the fear of the unknown will drive you crazy but you come to terms with it and deal with it one day at a time. if you have any questions come back and ask them. There are a lot of good women on the board that have knowledge of just about any subject that might arise. My advice would be to wait until after the hysterectomy when you get your stage number
as that determines how advanced the cancer is before you worry about any treatment that might occur down the road. Just worry about the surgery coming up right now.

Lynn

I wonder
You said your cancer was stage 2, grade 3, and you had radiation in the vaginal cuff.
I had clear cell adenocarcinoma stage 2, grade 3 and only had chemo, 6 cycles.

I had an appointment yesterday, and my doctor told me that I do not need radiation because I had a radical hysterectomy.

I am just curious why some of us did not have radiation, even though we had the same cancer and same stage.

daisy366

Fayard said:

I wonder
You said your cancer was stage 2, grade 3, and you had radiation in the vaginal cuff.
I had clear cell adenocarcinoma stage 2, grade 3 and only had chemo, 6 cycles.

I had an appointment yesterday, and my doctor told me that I do not need radiation because I had a radical hysterectomy.

I am just curious why some of us did not have radiation, even though we had the same cancer and same stage.

3958 and Fayard
Regarding papillary serous - called uterine papillary serous carcinoma (UPSC). I was diagnosed 3 years ago with stage 3 - maybe 4 (long story). My doctor considers this to be a chronic condition and said I can live a long time with it.

It is pretty scary to get cancer and then find you have a rare and aggressive SOB to deal with. But take heart, there are many treatments out there for us. I have had one recurrence and I'm cognizant that there may be others but I have learned to live in the moment.

Please don't get discouraged. Hang in there. Listen to your doc but ask lots of questions - even a second opinion if that helps. I do recommend that you ask your doctor for a tissue assay or functional profile which helps to identify the best chemo for you. Also get tested for hormone sensitivity. These tests will help your doc decide the best way to go.

Fayard, I also did not have radiation during my initial treatment tho most others had both chemo and radiaiton. When I asked my doc, he said that he did not believe that there was "science" to support me getting it. I worried but trusted his judgement. He believes in giving enough treatment but not over-treatment. I did have radiation for my recurrence which was in my neck lymph nodes. I don't think The lack of radiation had any connection with this recurrence. I just think some doctors give their patients everything including the kitchen sink - and some are more judicious or selective. I'm glad that I did not have to deal with the side effects of radiation that many others have had in abdominal and vaginal area. I do have some effects from my radiation in the neck which have potential to create problems in the future. But - one day at a time.

Wishing you ladies all the best - peace, joy, faith, courage. Love, mary Ann

Fayard

daisy366 said:

3958 and Fayard
Regarding papillary serous - called uterine papillary serous carcinoma (UPSC). I was diagnosed 3 years ago with stage 3 - maybe 4 (long story). My doctor considers this to be a chronic condition and said I can live a long time with it.

It is pretty scary to get cancer and then find you have a rare and aggressive SOB to deal with. But take heart, there are many treatments out there for us. I have had one recurrence and I'm cognizant that there may be others but I have learned to live in the moment.

Please don't get discouraged. Hang in there. Listen to your doc but ask lots of questions - even a second opinion if that helps. I do recommend that you ask your doctor for a tissue assay or functional profile which helps to identify the best chemo for you. Also get tested for hormone sensitivity. These tests will help your doc decide the best way to go.

Fayard, I also did not have radiation during my initial treatment tho most others had both chemo and radiaiton. When I asked my doc, he said that he did not believe that there was "science" to support me getting it. I worried but trusted his judgement. He believes in giving enough treatment but not over-treatment. I did have radiation for my recurrence which was in my neck lymph nodes. I don't think The lack of radiation had any connection with this recurrence. I just think some doctors give their patients everything including the kitchen sink - and some are more judicious or selective. I'm glad that I did not have to deal with the side effects of radiation that many others have had in abdominal and vaginal area. I do have some effects from my radiation in the neck which have potential to create problems in the future. But - one day at a time.

Wishing you ladies all the best - peace, joy, faith, courage. Love, mary Ann

Thank you
Thank you for the info.
I do have a question, and I hope you do not mind.
When did your cancer come back?

Hugs!

daisy366

Fayard said:

Thank you
Thank you for the info.
I do have a question, and I hope you do not mind.
When did your cancer come back?

Hugs!

Fayard
No I don't mind. I finished initial treatment (6 rounds of chemo) Feb 2009. May 2010 a biopsy of enlarged supraclavicular lymph nodes showed it has recurred in neck. However, after carefully considering my PET scans, I always had something show up in my neck area. My original PET scan was lit up throughout my body - I think I might have been stage 4 from beginning. I think cancer was there from beginning and that the radialogy doctors discounted cancer after treatment and said it was just "brown fat" in my neck when they read the PETs. It turned out to be resistant cancer cells that needed aggressive treatment. I tried the diet only approach from May to Sept but because the CA125 kept rising I had both chemo and radiation for 7 weeks (completed end of Nov 2010) and so far everything is clear and good. I have also quit fulltime work which has greatly lowered my stress. I exercise alot and do things at a casual pace.

Stay positive, things will work out. Mary Ann

Fayard

daisy366 said:

Fayard
No I don't mind. I finished initial treatment (6 rounds of chemo) Feb 2009. May 2010 a biopsy of enlarged supraclavicular lymph nodes showed it has recurred in neck. However, after carefully considering my PET scans, I always had something show up in my neck area. My original PET scan was lit up throughout my body - I think I might have been stage 4 from beginning. I think cancer was there from beginning and that the radialogy doctors discounted cancer after treatment and said it was just "brown fat" in my neck when they read the PETs. It turned out to be resistant cancer cells that needed aggressive treatment. I tried the diet only approach from May to Sept but because the CA125 kept rising I had both chemo and radiation for 7 weeks (completed end of Nov 2010) and so far everything is clear and good. I have also quit fulltime work which has greatly lowered my stress. I exercise alot and do things at a casual pace.

Stay positive, things will work out. Mary Ann

Thank you!
Mary Ann,

Thank you very much for sharing your experience.
I am very happy for you that everything wen well after recurrence.

Hopefully, mine will never come back.
I had Uterine Clear Cell Adenocarcinoma.

Keep in touch!