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UPSC Stage 1a

Solana's picture
Solana
Posts: 4
Joined: Nov 2011

Hi, I have never posted here before but have read many of yours and it has helped me very much. I am 57 years old and in good physical condition. I was diagnosed with UPSC stage 1A in October 2011 after a routine pap test showed abnormal cells. I hate to say it but it had been 3 years since my last test. I was cleaning out a drawer one day when I found an old appointment card from my last pap test and so I made the call to schedule a new one. To make a long story short, a biopsy confirmed uterine cancer and the doctor reassured me that a hysterectomy would solve the problem as it was a slow growing type of cancer. However on the follow up appointment 3 weeks after surgery my doctor surprised both me and my husband when he explained that it was UPSC, a rare form of uterine cancer. I was scheduled for and received 6 rounds of chemo with Taxol/carboplatium and followed that with three sessions of Brachytherapy of the vaginal cuff. I had experiences similar to many others I have read about, (low blood counts, Nulasta side effects, neuropathy and now extreme fatigue and leg pains). My question is this, and I would like to know if this sounds normal. I have never had a CA-125 test, (my oncologist told me it was not a proven test for UPSC) and, I have not been scheduled for any follow up appointments until the middle of August, that’s over 4 months from my last treatment, (no CT/PET to date). I know that my cancer was caught early and was just a single polyp found in the uterus but I have read about how quickly UPSC can metastasize. Do you think I am getting the best treatment? It worries me; can anyone allay my fears.

debrajo's picture
debrajo
Posts: 795
Joined: Sep 2011

NO! Hi, I'm Debra and I was diagnosed with 1A upsc, grade 3 in July of 09. Due to other major problems, I didn't have my total hysterectomy until Dec. 09. I had sis rounds of taxol/carboplatin starting in Jan.2010 and had five rounds of Brachytherapy between and along with the chemo. The ca-125 does not work well with all women, but it is the one my dr. at md Anderson in Houston Texas uses to keep a check on me without using routine cat/pet/x-rays that put us a greater risk. I think it is VERY important(I'm opinionated!)to get the test to at least get a base-line number. Mine was 42 before surgery and has gone down then up, back and forth, but never going over 18 (normal is 0-35). If it were me I'd either get the test or get another dr,! just saying, some wont agree with me, but I have been NED for two years! Hope this helps, best debrajo ps. after treatment ended I went back after one month, then for the next year, every three months,a year of every four months, and now I go in every six months which makes me very nervious!

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

Sorry you have joined this club (UPSC).

I'm curious. Is this correct - your doc knew it was UPSC BEFORE hysterectomy but after surgery told you it was rare? If this is the case, he/she sounds like unfamiliar with UPSC.

Here's my two cents. You MUST have a GYNECOLOGIC oncologist. This cancer is so rare that some oncs haven't even heard of it.

The CA-125 test is not always reliable but it is for me - why not get it??

I got scans before and after treatment and then annually. 4 months is not too long - it's usually 3-4 months. But how is your doctor going to know if there is a problem? just by internal exam? I've had two recurrences and both correlated with rise in ca125 and positive scans.

YOU are driving this bus!! ASK LOTS OF QUESTIONS. and get second opinion, if you are not totally comfortable with your doctor. It is common for people to consult with others.

All the best to you. Mary Ann

mymoms1st
Posts: 3
Joined: Jul 2012

Daisy can you tell me where was your recurrences at? My moms markers are 220 and they see something in the bowel they are currently just calling it an obstruction but I am concerned that it is recurrence because of how aggressive UPSC is. She had a repeat scan yesterday but wont get results until Tuesday.

Solana's picture
Solana
Posts: 4
Joined: Nov 2011

Thank you for your response and recommendation. My name is Sherry. When I read all the stories of what others have gone through with this cancer I sometimes feel a little foolish for my worries. I know that many have much more on their plate than I do and my thoughts and prayers go out to them. My first oncologist admitted that his office, (and there were 3 gyn/oncologist on staff) had never treated this type of cancer and so I transferred to UPMC, That’s The University of Pittsburgh Medical Center. I have felt good about my treatment plan as it mirrored much of what I’ve seen others here have but this follow up makes me wonder. I do feel blessed that my cancer was found early and my heart goes out to so many others and their families who weren’t as fortunate. Thank you so much for your advice and I’ll let you know how things go from here. Best wishes to you for your continued NED.

Solana's picture
Solana
Posts: 4
Joined: Nov 2011

Hi there! I’ve read some of your posts in the past and appreciate your experiences and strength. I was not diagnosed with UPSC until my follow up after the hysterectomy. The original oncologist told me that my cancer was adenocarcinoma and said it was common and very successfully treated with surgery alone. I am usually not one to question the doctor but in this case I believe I must. Thanks for your advice! I would feel so much better if I at least had a base line to start from. I know it would be late in the game but its better late than never. The entire unknown makes me nervous. Best wishes to you Mary Ann.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Welcome to the club :(

Did you have just a hysterectomy or did you have a laparotomy? UPSC is aggressive and typically everything is taken in addition to the uterus. I too get the CA-125 and it seems to be a good barometer for me - 249 just after surgery, 34 after 3 chemos, 8.9 after radiation, 7.6 after starting the last of 3 chemos.

Sounds like you are recovering well and I hope you continue to be NED :)

Liz in Dallas

Solana's picture
Solana
Posts: 4
Joined: Nov 2011

Thanks Liz, for your input and support. I had the Da Vinci surgery which went very well and yes, everything came out along with 12 lymph nodes, all tested negative except for the mushroom like growth in the uterus and it biopsied 90% high grade. All the terms are new to me but this site and all the survivors here have really helped me to understand it all so much better. I know that I still have a long way to go but with the support and knowledge I continue to gain from this site; I do feel better about making decisions in the future and perhaps someday even helping a nu-bee like myself. Best wishes, Sherry

cheerful
Posts: 127
Joined: Apr 2011

Hi Sherry:

I wanted to respond to your post of today. I was also diagnosed with UPSC (Stage 1) in February of 2011 After my hysterectomy. I am now 60 years old and will turn 61 in July, but I was 59 when I was diagnosed (last year). I live in PA (in a suburb outside of Phila). My gyno who did the surgery did not know at the time that I had cancer and it was found after my hysterectomy so once I was diagnosed with cancer, he immediately introduced me to a gyn/oncologist who he knows very well and who is very well known nationally and locally. He is affiliated with Crozer Hospital in Upland (which is a suburb in Delaware County, PA) and also another local hospital in our area. My gyn onco is extremely knowledgeable regarding UPSC and has 35 years of experience in his field. I found out the end of February of 2011 that it was UPSC and my gyn/onco immediately recommended that I go through 6 rounds of carboplatin/taxol and 3 rounds of radiation. He also recommended surgery of the omentium/lymph nodes, but I decided not to get it done because when I had my cat scans done last year nothing lit up on the cat scans and I felt why put myself through additional surgery if I don't need it. I know it was recommended but my gyno/onco did not push me to have it done so I decided not to have it done. Plus I was concerned about lymphadema and I felt it would further weaken me since I was undergoing chemo. My surgery alone was 3 1/2 hours long. My cancer was a large polyp as I had 6 months of bleeding before I had surgery. After my surgery, my incision broke open, so I had to go back in the hospital to be treated for it and then I had a home health nurse come to my house to treat it for 5 to 6 weeks. By the end of March of 2011, my incision was healed - thankfully.

I did pretty well through chemo and did have to get a Neulasta shot near the end of my treatments. I had nausea and constipation after chemo, but that was about it. I then went through 3 rounds of radiation. I started my chemo treatments in April of 2011 and finished with my radiation in mid October of 2011 so it was a good 6 months until everything was done.

Regarding the CA 125 I have had these blood tests done since right before I started chemo and continue to get them every couple of months. I saw my onco in February and had a test for the pap smear and everything came back normal for which I was very grateful and thankful. I had the CA 125 blood test done the end of February and that came back 8. My latest cat scan in mid April of 2012 came back with No evidence of disease and for all of this I am very grateful and thankful. My CA 125 level has been around 8 or a little higher so it is in the normal range.

Obviously going through chemo you do lose all your hair and now my hair is at a short length. I still wear my wig that I bought in March of 2011 and it is very close to my own hair color. It is a one length bob with a bang and I used to wear my hair as a bob. I want it to grow longer still so I have a ways to go. I have gotten several compliments on my wig.

As far as your treatment is concerned, I would make sure you get the CA 125 test done and push for it and you definitely need to have a Cat Scan. I had 3 cat scans done last year and one so far this year and will have another cat scan done in the fall. Thankfully, everything has come back with no evidence of disease. If you are not happy with your oncologist I would try and find another one in your area.

Good luck with everything and let me know what you decide. As you know, UPSC is very rare and is aggressive. I too, feel very fortunate that my cancer was caught early.

Cheerful

mymoms1st
Posts: 3
Joined: Jul 2012

My mom was also diagnosed with UPSC in July of 11 and they found cells outside the uterus so in August they did a total radical hysterectomy, they took all the lymph nodes from her pelvic area and her abdominal fat pad as well as the lymph nodes around her aorta, she had 6 rounds of Taxol/carbo and 25 radiation treatments, she finished in February, she has had many of the complications commonly seen with this treatment too, She has been having a lot of bowel complications and they seen something on her follow up CT scan, they have been following her CA-125 markers and they are rising currently they are 220, she had to have a repeat CT scan yesterday and we are waiting for the results, I am a peds oncology nurse so I am fearful that this is mets, Solana I think that this type of cancer is to aggressive, and recurrence is so high that you should push for them to monitor more closely including CT scan and Ca markers, They are not the tell all, but at least they are one more indicator that might help catch things early so they can treat if need be.

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

My recurrences have been in the lymph system. First one (about 14 months post treatment) in supraclavicular nodes and second (again 14 months post second treatment) in periaortic and pelvic nodes (currently taking aromatase inhibitor).

I feel fortunate that no mets have gone to organs. My CA125 keeps climbing though (now in 90's - I get it checked monthly) and after scan in August will make more decisions.

I get PET/CTs now (my doc's preferred scan). If CT is showing something, insurance will likely approve a PET (that's what mine did). How is your mom handling all this? It's definitely anxiety-producing.

Wishing you and your family all the best. Mary Ann

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