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mom has "serous carcinoma" / UPSC, what is coming ahead?

Karen Ann
Posts: 3
Joined: Mar 2012

Hello
My mom had a pap smear last March 19 Monday and by Thursday, the OBGYNE called and said she had "serous carcinoma". The OBGYNE also ordered a pelvic ultrasound, which she had done on Thursday. She saw a GyneOncologist the next day and had orders for CT of pelvis, abdomen and chest. These will be done this coming Thursday March 29 along with mammogram. Then next Monday, April 2, she will see the gyneoncologist after he gets the results of the CT scan, pelvic ultrasound, and mammogram.

According to my internet research, "serous carcinoma" is Uterine papillary serous carcinoma (UPSC). I hope I am correct.

I wanted to know what is coming ahead for my mom. I am pretty sure that she will need a hysterectomy including her tubes, ovaries and cervix. At that time, she will probably get "staged". What comes up next? chemo? radiation?

What really makes me sad and nervous about is how long will she live. She is only 62. She is the nicest person on earth. I cry whenever I think about her being gone. I want to know how long patients with this type of cancer live. Will we have enough time to spend together? It makes me sad to think that she maybe gone soon.

I feel really bad for her. We didn't know this was coming or was going to happen to her.

Thanks for reading. Encouragement would be appreciated.

Karen

sunflash's picture
sunflash
Posts: 154
Joined: Aug 2011

Karen,
I'm sorry that your mom received this diagnosis. Yes, this is a very difficult thing to deal with. However, nobody knows how long your mom has left or what her prognosis will be. After her surgery and staging you'll have a much better picture.
Most women with this cancer get a radical hysterectomy which includes the removal of tubes, ovaries and cervix. My doctor felt strongly in removing everything to lessen the chance of cancer spreading via the tubes into the ovaries.
Most of us have had chemo, and many receive radiation. There are different viewpoints on this and her doctor will advise her as to what her treatment should be. It never hurts (and is a good idea) to get a second opinion, which is what I did.
Even though this is a rare and aggressive cancer, my doctor told me she has treated many women with this cancer and most had favorable outcomes. I asked her about their outcomes five and ten years later, and she said they were good. I also know she has written papers on this type of cancer in conjunction with the doctors at MD Anderson, so she is knowledgeable on the topic.
Your mom is lucky to have you...I can tell you love her very much and will be a huge source of strength for her.
The time between getting diagnosed and starting treatment is very stressful, but things will get better when your mom actually starts treatment, as she will be fighting and taking steps to eradicate every bit of cancer from her body!
Let us know how things progress...don't hesitate to come here as often as you need for support! I'm sending you big cyber hugs for both you and your mom!

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

Karen, we are all sorry to add you and your mother to our list, but really, this is THE best place to go to ask the questions the doctors don't want to go out on a limb and answer! Don't be afraid to ask (or say) anything. It is a complex cancer that frustrated all of us and had sent me close to the edge more than once, especialy about the CAUSE of this and having to pull info out of a lot of our doctors! This will be an education for both of you. If you have time, start slowly and read as many post as you can. make a list of questions and ask some of the smarter ladies here that are long-time survivers. Mostly, just love your mother, hold her close, and be her advocate when she is too overwhelmed to think straight. We will be here...let us know...and DO NOT believe all you read on the internet...it will scare you to death! Love and best wishes, Debrajo

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

Adding to what's already been said-

Make sure you have good gynecologic oncologist, request a tissue assay (functional profile) of tumor. Write down questions, bring someone with you, get copies of your records, feel free to get second opinion, stay in the now (try not to project too far in future of regret the past).

We are here for you. There's lots of good living ahead for all of us.

Hugs, Mary Ann

Karen Ann
Posts: 3
Joined: Mar 2012

Sunflash,Debrajo and Daisy366,

Thank you for your replies. It feels nice to hear that outcomes after five and ten years are good. Of course it depends on the individual but it is still a good feeling to know this.

Thanks for the great advices. I will write my questions before I bring her to the GyneOncologist next Monday. I will even ask about tissue assay.

I will keep you updated on how things will go this coming weeks. Thank you once again.

Karen

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

Hi Karen,

It depends where you are located as to whether they will do the assay, we are based in Australia and they don't do it here.

My mum's UPSC was found at the age of 58 by pap smear in December 2010. Staging found it to be 3C (microscopic traces in the lymph nodes). When I found out it was UPSC and at an advanced stage I was completely devastated, everything you read about the disease isn't pretty.

Mum had 6 rounds carbo/taxol and then 5 weeks of external radiation with chemo every week. She also had a few sessions of internal radiation. I imagine this is what they will also do for your mother.

The only thing I can say in hindsight is that mum should have had more than the 6 rounds. She wasn't that sick on chemo and could have done it. I think that would have increased her chances of a longer remission.

Good luck with the surgery/staging.It is absolutely devastating news but it does get easier to deal with in time.

Tali x

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

Tali,

I agree with you about the extra rounds of treatment. I will have this conversation with my doctor in the future if needed. It makes sense to me to hit that UPSC with extra doses if the patient is tolerating treatment OK.

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

I really agree with daaisy366. My dr. opinion was hit it hard , fast, and intense. Radical hysterectomy, five rounds of internal radiation, and six rounds of taxol-carboplatin. If your mom tolerates the chemo well(which I did) then go for the full-monty!Best of luck, debrajo

Karen Ann
Posts: 3
Joined: Mar 2012

Ladies,

My mom and I saw the gyneoncologist today. Yes, her diagnosis is UPSC. Her CT scans showed enlarged lymphnodes all over her abdominal thoracic area, and a lesion in the back of her liver. She will have Robotic Total Hysterectomy and Bilateral Salpingo oophorectomy with lymph node staging within the next two weeks. Then she will have a CT scan guided retroperitoneal liver biopsy at a later time. He said that she will definitely have chemotheraphy. I feel that he likes to discuss things one a time. He wanted us to concentrate on her surgery first. I asked him about her stage and he said, most likely Stage 3C. We are in the Chicago area USA. What else should I ask him? Is there any other test she should have in helping to erradicate this nasty disease? PET SCANS?

Thanks for reading
Karen

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

I get PET scans but some docs prefer CT and some insurance companies won't pay for PET unless there's a recurrence. I'm done all the fighting which was really fruitless until recurrence confirmed.

One thing I do suggest now is for you to request a tissue assay of tumor/s. This should give docs more info that will help with treatment decisions.

I agree that docs give us as little info as possible - probably to keep us calm and hopeful. Keep asking questions, writing things down, and getting copies of records!!

All the best to you and yours. With hugs and prayers, Mary Ann

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

I am sorry your mother must deal with this disease. I was diagnosed as UPSC Stage IVB following optimal debulking surgery over 4 years ago. The surgery was open incision not robotic and the doctor was able to remove multiple small tumors throughout my intestines as well as removing my spleen which contained a small tumor. The omentum was removed and it contained multiple tumors as well. The doctor was able to examine my liver and found it to be uninvolved. He removed only select lymph nodes thought to be enlarged so I was able to keep most of my lymph nodes which are such an important part of our immune system. Robotic surgery is much less invasive and allows for a much quicker post-op recovery period but many surgeons opt to do the open incision if there is concern for more extensive spread beyond the pelvic area. ‘Optimal debulking’ refers to being able to remove essentially all visible cancer and is usually noted with wording such as ‘all evidence over 5mm removed’. Optimal debulking is associated with improved prognosis. UPSC is notorious for spreading over a wide area rather than just growing as a localized tumor. If you have any concerns it may be helpful to get a second opinion prior to surgical date. Your mother’s overall health and fitness level may determine doctors’ recommendations as well.

I do hope all goes uneventfully and she will be on the road to recovery quickly.
Sending positve thoughts your way.
Annie

angiematty
Posts: 1
Joined: Apr 2012

Hi...
I am a 1 yr. survivor of UPSC and also live in the Chicago area. I had 6 rounds of chemo and 3 internal radiation treatments for stage 1 grade 3. During my treatment I sought out a nutritionist to help with diet, supplements and lifestyle which really helped me tremendously. I am a 9 yr survivor of invasive lobular breast cancer so I unfortunately knew the drill of chemo and radiation and how the body needs extra help. At that time I also had a nutritionist. After finishing up treatment this time I stumbled across the book Life Over Cancer by Dr. Keith Block. It is awesome and lo and behold this doctor and his center is in our backyard-Skokie IL. I made an appointment immediately and now wished I had all my treatments there. I still go to my oncologist for the 3 month checkups but follow up with the Block Center for an in depth analysis of blood workups, etc. I can't say enough about this facility and the staff. By the way, if you're a patient of the Center you can drop in at noon for a cooking class and have a delicious lunch. I'm amazed at all the patients that are literally hooked up to their IV that walk in the demo and have lunch. I was a complete zombie for all of my treatments so I'm quite impressed! Cancer is non fun but having support of fellow survivors and professionals can make a big difference.

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