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

Karen,
I'm sorry that your
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 said:

UPSC
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

Karen,
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 said:

Sunflash, Debrajo, Daisy366,
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

Hi Karen,
It depends where
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

Karen Ann said:

Update
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

Karen
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

Karen Ann said:

Update
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

update
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.