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UPSC Diagnosis

Abbycat2
Posts: 72
Joined: Feb 2014

I have been reading the postings here for the last couple of months and have found the information very useful.  Thank you!  It has helped me cope with a terrible diagnosis. I was diagnosed in November, 2013, with UPSC, Stage 3A following a hysterectomy and removal of my fallopian tubes, ovaries and lympth nodes.  UPSC is a grade 3 cancer.   I had one symptom one day in September and went to a gynecologist immediately for an evaluation. I had positive washings and no cancer in the removed lymth nodes were found.  A PET Scan did not show cancer tumors anywhere else. I did not have my omentum removed or biopsied, as the oncology gynecologist did not know, based on a previous biopsy, that I had the more aggressive UPSC.  Given my situation, I wonder if I should have my omentum removed.  Any information that you can provide about this would be helpful.  I am receiving the standard of care, that is, 6 cycles of Taxol and Carboplatin.  I will have my 5th chemo tomorrow and my onc. gynecologist will be talking to me in March about radiation treatment following the chemo.  If you've had radiation treatment, please share your experiences with it along with your stage and grade of cancer.  Also, if anyone out there is familiar with the Moffit Cancer Center in Tampa and know of a good doctor there (phone # too), please let me know.  I live in Central Florida on the east coast and have heard some good things about Moffit.  I did go to the Florida Hospital in Orlando for a second opinion last November but I was just not impressed with the doctor I saw there.  He did, however, provide a second opinion.  As you know, learning that I have this disease was quite a shock as I take good care of myself.  I joined an ovarian support group in Vero Beach since UPSC is most like epethial ovarian cancer.  These women have been an inspiration to me.   Cathy    

Hybridspirits's picture
Hybridspirits
Posts: 148
Joined: Nov 2012

just curious how they staged it as a 3A?  the positive washings? 

if it is suggestd that you get radiation the thing to understand is what is the target for the radiation.  It is my understanding radiation is very targeted and is address where it is pointing.  Whreeas Chemo is the entire body.

for example internal radiation is for the vaginal cuff. I had that with a Stage 1A no lymphn involvement,  not USPC but a grade 3 not USPC. 

i did not have external radiation as no lymph node involvement to attack

 

Abbycat2
Posts: 72
Joined: Feb 2014

Thank you for your response, Hybridspirits!   The 3A was determined from the path report following my hysterectomy and the PET Scan results.  My metastatic UPSC had spread to my fallopian tube to my one ovary to the outside of the ovary and I had positive washings.  No tumors were found other than in my uterus (the cancer had invaded halfway into my myometrium).  My PET Scan showed some bright spots around the vaginal cuff and my onc gynecologist thought it was because of my recent surgery.  When I saw him last, he suggested radiating the vaginal cuff and we will be talking about that when I see him in March.     

 

Hybridspirits's picture
Hybridspirits
Posts: 148
Joined: Nov 2012

got it.  His ratoinale for the internal radiation makes sense. I had that and it really wasn't much at all.  

 

Ro10's picture
Ro10
Posts: 1390
Joined: Jan 2009

Sorry you have to join us.  I too was shocked when my diagnosis of UPSC stage 3-C was discovered.  I had no symptoms.  My doctors thought I would only need a hysterectomy.  

I go to Moffitt in Tampa.  Dr. Sachin Apte did my surgery.  I am very pleased with him.  I have had chemo 3 different times and always started my chemo at Moffitt.  We go back to Illinois in the spring, so I finished my chemo treatments in Illinois.  I also had 28 IMRT, external radiation treatments as well as a 28 hour internal radiation treatment In Illnois.   I had the sandwich treatment Initially.  

Moffitt is a very busy cancer center.  That is my only complaint, is the long wait for labs, scans or appointments.  I do value the expertise of Dr. Apte.  My onocologist in Illinois follows his recommendations.  Dr Apte's phone number is 813-745-8450.   Moffitt has probably 54 chemo chairs and my cancer center in Illinois has only 16.  So during chemo treatments, I feel I get more individualized trEatment In Illinois.  However when I had reactions to chemo at Moffitt the nurses were right there, and quickly took care of the reaction.  I have had three different reactions.

I had minimal side effects from the radiation, and I have not noticed any long term side effects from it.  They recommended I have a full bladder before each treatment,so the bladder would push the colon away from the treated area.  I don't know if that is why I did not have the diarrhea others had.

Good luck with your 5 th chemo.  Congratulations you are almost finished.  Come back with any other questions or concerns you may have.  In peace and caring.

Abbycat2
Posts: 72
Joined: Feb 2014

Thank you, Ro10!   I have been reading your postings and have found them very helpful.  Also, I read a lot of Linda P.'s postings and was sad to learn that she had passed away.  What a terrible loss- I would have liked to have known her.   When were you diagnosed and have you had any recurrences?   I am very worried about what will happen after the chemo is done and possibly radiation. I hear that recurrence is high with UPSC.   I don't even know if the chemo is helping me.  My Ca 125 that was done after my hysterectomy was normal.  Thank you for your support and best wishes to you as well!

Cathy 

Ro10's picture
Ro10
Posts: 1390
Joined: Jan 2009

In Oct 2008 I had an abnormal pap that was highly suggestive if adenocarcinoma.  In Jan 2009 I had DaVivci hysterectomy with 25 lymph nodes removed.  5 of the lymph nodes were positive as well as the abdominal washings.  I was diagnosed with UPSC stage 3C. Dr. Apte told me at that time that my UPSC was not curable, but treatable like a chronic disease.  Therefore I know I will always need treatment.

when I go off chemo my CA 125 begins to rise, so I have never been NED ( no evidence of disease).  I have had 2 recurrences.  The first recurrence my CA 125 went to 1700's the second recurrence it went to 3200.  Right now ny CA 125 is 712.  I have never had any symptoms with the initial diagnosis or the recurrences.  I know I will need chemo again.  It has been 20 months since my last chemo. I am taking a drug called Aromasin which is supposed to slow the growth of cancer.  It seems to be working for me.

You mentioned Linda P.  She and I were diagnosed about the same time.  We both had different journeys.  Knowing how quickly things can change I try to enjoy each day.  I spend my time with positive people.  I believe strongly in the power of prayer, and thank God for every day.  I have a plaque displayed which says " Cherish Yesterday, Dream Tomorrow, and Live Today".  Notice it says Dream Tomorrow, and not WORRY.   Worry only robs you of enjoying the present.

Since your CA 125 is not a good sign for you, you will need to follow up with exams and scans.  They are making progress with drugs to treat cancer, so hopefully there will be advances for UPSC, too.  I read the Ovarian board, too since UPSC is very similar to ovarian. Lots of helpful information on there, too.  I also read the Inspire board for Ovarian cancer.  Reading these posts keeps me informed on the latest treatments.

Wishing you the best as you complete your treatments.  May you dance with NED for a very long time.  Comeback with any other questions or concerns.

Ark1974
Posts: 5
Joined: Apr 2014

RO10, I have enjoyed reading your posts, you seem to be very knowledgeable in this area.  I was dx in Feb with 1A upsc, and was advised by my doctor that the course of treatment was to observe, my question to you is have you run across anyone that too was given this treatment?   I am seeking a second opinion since there is very little I know about this type of cancer.  Your commment is much appreciated.

blessings to you my friend, Debi

Ro10's picture
Ro10
Posts: 1390
Joined: Jan 2009

I think there  have been some with stage 1A amd have been in observation.  I can't think who they were though.  I don't know if they had UPSC though.  Did you go to a Gyn/ onocologist?  If you are not comfortable with what your doctor recommends, you should get a second opinion.  You should also check the recommendations of the NCCN guidelines for stage 1A UPSC.  Good luck with getting your questions answered.  

I know UPSC is an aggressive cancer.  

You can also type UPSC  stage 1A  in the title box on the first page of the Uterine board and you will find posts regarding what others have written.

Ark1974
Posts: 5
Joined: Apr 2014

Ro, yes I am gettng a second opinion, I did have a complete hysterectomy in February.  I have already spoken to a second doctor and he was going to

speak with the other doctors on my case and get a new treatment plan, it is looking more like preventative chemo.   I know chemotherapy is not easy but

I will do it to be more assured that it upsc is killed and gone.

 

Blessings to you!

NoTimeForCancer
Posts: 427
Joined: Mar 2013

Debi,

I was Stage 1A UPSC.  I had complete hysterectomy and omentum removed.  He took a ton of lymph node samples - all clear and still had the chemo/radiation/chemo sandwich.  I consider myself so lucky to have caught this so early, but it is an agressive type, and while I didn't want the entire treatment, I knew it was to kill any chance of this coming back - and I believe that.

I had my radiologist (didn't care for him) say to me "we don't see women with this cancer this early" and that I had an excellent prognosis. 

I do remember one woman on here debating whether or not to take the treatment since it was so early, but in the end, because it was UPSC, she decided to have the treatment.

Good luck, ask any questions of us and don't be afraid to ask questions of your doctor.

 

 

Sandy3185's picture
Sandy3185
Posts: 28
Joined: Oct 2013

Hi Debi,  Sorry that you had to join us here, but you will find these boards very helpful and informatiive. I know I have! I agree with Ro, UPSC is a very serious and aggressive disease. I would definitely look for a second opinion. Have you had surgery yet? I was diagnosed with UPSC stage 2 grade 3 in Nov 2013 and had a complete hysterectomy including ovaries, tubes, omentum and testing of 27 lymph nodes. The cancer had also spread to my cervix. 

You are very lucky that you discovered the cancer so early, but I would still be uncomfortable with a wait and see attitude. I can't understand why some doctors want to wait until something worse happens before starting treatment.

wishing you good luck, Sandy

Ark1974
Posts: 5
Joined: Apr 2014

Sandy,  thank you for your reply, I too was not feeling very easy about the "wait and see" , so I have gotten a second opinion

and this new doctor explained the difficulty in choosing a treatment plan,  since my cancer was discovered so early, he actually said that

if there were a grade of zero, I would be that.  My regular GYN discovered the cancer so soon that when I went to the GYN/Onc for the biopsy

he actually removed the entire cancer out of me.  My hysterectomy was done and there was no sign of the cancer there.  So the doctors are

going to conference together and come up with a treatment plan, which he said that it was most likely going to be some chemo.

 

Blessing to you my friend, Debi

Kaleena's picture
Kaleena
Posts: 1050
Joined: Nov 2009

Dear Cathy:

Sorry you had to find this site. I was diagnosed with Grade 2 Stage 3A endometrial adenocarcinoma after a "routine" total  hysterectomy.   I then went back into surgery a month later for staging.  At that time they removed my omentum and my appendix and 25 lymph nodes.  They did not find anything else at that time.  I was originally given the Taxol Carboplatin treatment but then they changed me to Gemzar and Carboplatin.   The only radiation I had was brachytherapy after I had completed the chemo.   They advised against pelvic radiation because of my significant scarring issues.

Glad to see that you are almost done with the chemo.  The brachytherapy isn't much of a big deal other than getting fitted for the dialator which can be embarrassing if you are not informed about it.   After that, mine was only 3 short less than 10 minute sessions.

As the others have said, keep a positive attitude. (which it seems that you have!)

My best to you.

Kathy

Dee5678
Posts: 37
Joined: Feb 2014

Cathy, just wanted to send warm wishes to you in your recovery. Hang in there. Chemo #5.  You are almost there! I am newly diagnosed and can't answer your questions. Just wanted you to know that I was glad you have posted. Though I am sad you had to join us, it's always nice to have company.  Love the expertise and wisdom that everyone brings to the table.  Please keep posting and let us know how you are doing. 

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