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UPSC possible recurrence

Harrber's picture
Harrber
Posts: 9
Joined: Feb 2011

I am new to this discussion board - I was diagnosed in December 09 with uterine papillary serous cell CA (combined with endometroid cells). My initial staging was IIIa but I was "upgraded" to Stage II when the FIGO system was revised - I had a total hysterectomy, followed by carboplatin and taxol, followed by pelvic and internal vaginal radiation - the full arsenal -
I am on track for CT scans every 6 months - first one in August was good - but I just had the second and there seems to be some suspicion of recurrence in lymph nodes - so I am scheduled for a PET scan next week.
I try very hard to wait until I have definite information before reacting, but of course am terrified, as well as incredibly disappointed after going thru a pretty rough treatment.
BUT trying to be hopeful and know that even if these nodes are positive, there is still treatment, and time. Would be interested to know if anyone has had recurrence of UPSC in just the lymph nodes and what their next options were for treatment.
Thanks - good to find a community!

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Welcome Harrber, but sorry you have the need to join the community.

My recurrence of UPSC was in the lymph nodes - a common location for recurrence to show up -- mine showed up in the para aortic nodes. It was confirmed by positive biopsy as there could be other reasons for enlarged lymph nodes. PET scans show increased uptake of the radioactive glucose by cancer cells.

There are various options for treating recurrences from going back to the same first line chemos as initially used, as well as second line chemos, of which there are many. I achieved NED status with Gemzar as a single agent. Every case of recurrence is treated on an individual basis, not really any specific standard as occurs with first line treatment. However, this is an excellent place to discuss proposed treatment options to see what others have experienced as well as gain insight into what to expect with the various treatment options. There is, unfortunately, a wealth of experience to be mined from the members of this board, who generously share their knowledge and experience ... and much support and caring.

Take a deep breath and know that should this prove to be a recurrence, there are options and, if so, that this can be treated and managed as a chronic, not a terminal, disease.
Annie

PS: I just read your profile page - I too am both a breast cancer and uterine cancer survivor: nearly 18 years since initial breast ca, 12 years since breast ca recurrence, 3 yrs since Stage IVb Uterine/UPSC, 1.5 yrs since UPSC recurrence.

Harrber's picture
Harrber
Posts: 9
Joined: Feb 2011

Thank you so much for your quick response upsofloating - and the reassurance in it - somehow knowing things is never relevant until you talk to someone who has actually had the experience - and of course as you know, it is hard to get much info about this disease. I have spent much of my life as a psychologist working with people with cancer - and it somehow never matters what I know and how I know to handle things when it comes to myself! Not unusual I know
I am taking lots of deep breaths, and trying to stay in the moment - and trying to focus on this as more of a psychological emergency than a physical one right now!
Pretty remarkable similarities in our medical histories - I just had a number of genetic tests done, since there was so much cancer in my family - everything came back normal - full BRCA testing and testing for something called Lynch Syndrome - and when I talked to my doctor I said "so they just haven't discovered the gene mutation I have!" - which is really what I believe.
I am glad to be connected - thanks!

nancygt
Posts: 86
Joined: Jan 2010

We are on similar paths as I had surgery 12/08, the sandwich of carboplatin/taxol and both external and internal radiation. Ca 125 went from 600 down to 9. At first CA 125 check 3 months after treatment,it went up but not out of normal range. By 6 month mark Ca 125 up to 180., CTY scan showed para-aoric lymph node, it lit up on PET scan and needle biopsy showed USPC. Since it was a few localized tumors, they did 6 weeks of IMRT (often called tomotherapy) and next PET scan July 2010 was clean. However by late Oct. CA 125 went from 50 to 100 and sure enough it was another recurrence not far away but as the tip of my lungs. After waiting nearly 3 months due to drug shortages, I have started 7 rounds of Cisplatin/Adriamycin.
I guess my point is not not be terrified of a recurrence - my first one really kicked me in the butt. This disease can very well be a chronic cancer -there are quite a few postings on that in recent months. And don't let the statistics get you down (I just vented on that under "lies, Damn Lies and statistics")Doctors are treating USPC differently from even 10 years ago, they predict much better survival rates and you will find that a long lists of drugs are showing efficacy for putting you in remission- Gemzar, Doxil, my combo above, Avastin and others.You might even check out the Ovarian board as many of us with UCPS do since our cancer has muc hmore in common with Ovarian than Uterine Adenocarcinoma.
I can't tell you how much you can gain from these boards-I may not post every day but I always read. I have gained so much information and inspiration here. In fact, my new oncologist is setting me up for a surgical consult to consider second surgery because of an MD Anderson article I read and then the wealth responses from the USPC sisterhood that they all had abdominal surgery with pelvic washing, removal of the Omentum, and biopsy of higher para-aortic lypmh nodes- I did not (had already parted ways with that gynoncologist for several reasons). But this board gave me determination to find out if that is water over the dam or if second surgery to remmove omentum makes sense.Sorry you had to join this group of cancer patients but this board can do so much to warrant the name "Cancer Survivors Network".

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I was diagnosed with Stage 3 - C UPSC 1/09. Had sandwich treatment ending 8/09. Immediately after treatment my CA 125 started to rise and has continued to rise with each test done every 2 - 3 months. I have 4 nodes they have been watching. My last CA 125 went to 1510, so I will begin another round of Taxol/Carbo every 3 weeks on 2/22. I can certainly understand your anxiety. There are definitely many options for treatment. It depends on how you respond to the medications and how your body can handle the treatments.

Welcome to the site, but so sorry you have to be here. Good luck with your PET scan this week. We all know how hard the "waiting for results" is. Contine to be hopeful. In peace and caring.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It's hard not to panic - I panicked when I had recurrence in May 2010. But I have since had biopsy of node (positive for UPSC recurrence) and completed chemo and radiation successfully. So, even though it is scary and hard to hear = or even think about - I think recurrance is common with this disease and treatment can be successful.

Hang in there. Mary Ann

Becky444's picture
Becky444
Posts: 29
Joined: Jul 2010

Hello Harrber,
Welcome to our discussion group. I am sorry you have to join us but am sure you will receive a lot of strength from these fellow sisters.

I was also diagnosed 8/09 with Stage IIA UPSC. I went thru treatment (6 rounds or caboplatin & taxol & 5 brachy therapies) and had a clean CT after treatment in January. When the new staging came out, I was changed to Stage I. I had a few cells in my wash which puts me at greater risk for recurrence. I just had my year chest X-ray and CT of the ab/pelvis. Next Mon, Feb 21, I will find out the results. I, too, am sitting on the edge of my seat...so to speak. I could call but have decided to enjoy the peace I have now. I have found guided imagery to be so helpful in dealing with all of this.

I have rely on this board for support. Many of the gals are doing well inspite of a recurrence and that is so good to know. Lots of times we just don't know what to expect but rely on the board. We are there for you!

Wish you the best & will remember you in my thoughts & prayers. Please let us know how you are doing.

Becky

Harrber's picture
Harrber
Posts: 9
Joined: Feb 2011

Becky - thanks so much - the waiting is so hard since your mind just goes where it goes - and I have to work hard to quiet it down and just focus on today -
It is so helpful to be among people with this disease - as hard as it is to hear about recurrences and the challenges, it is helpful too to see people living with the disease and finding strength in one another -

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