Roll Call For UPSC only

Diagnosed in Nov 2012,at age 64, treated at Duke University Medical Center, after symptoms of vaginal bleeding. Only other symptom was abdominal distress - nausea, bloating.  Total hysterectomy, with tubes, ovaries and lymph nodes removed, and debulking. Diagnosed Stage 4. Carbo-taxol chemo. Developed neuropathy (numbness and tingling byt not pain.) 25 IMRT radiation treatments.  

Chemo shrunk the paraaortic lymph node that wasn"t removed. NED at CT Scan Dec, 2013. Abdominal hardness and problems with diahrrea, alternating constipation, cramps, nausea in June, 2014. CT Scan showed cancer throughout the abdominal cavity, and around large intestine and colon, hydronephrosis (scarring on ureters from radiation), scaral insufficiency fracture (radiation after effect), bowel thickening, enlarged iliac lymph node.

Due to the neuropathy and ureter/kidney issues I declined another round of chemo (50-50 chance of shrinking the cancer for a time.)  

The oncologist had the original uterine tumor tested and it turns out to be Estrogen and Progesterone positive (which I'm told is rare for Serous cancer, especially with Her2 being negative.) I am currently on Femara/Letrozole, and oral aromatase inhibitor.  I had to leave a healthy anticancer high fiber diet due to abdominal problems and am on a low fiber diet to prevent bowel blockage.  I also continue with acupuncture, meditation, and guided imagery. I have started on an alternative supplemental protocol to help with symptom management and shrinking the cancer. My goal is to walk and meditate daily (I do so most days.) I tire more easily, but otherwise hanging in there.

Thanks for the roll call,

Sungranny

I was diagnosed in April 2014 at age 66 and had a radical hysterectomy and removal of 23 lymph nodes which were clear. Stage 1A/ grade 3. A wash was not done during surgery because my doctor did not know it was UPSC until the path report came back.  (It was misdiagnosed in my original path report.) Since we don't know if it had spread to the abdominal cavity, I was given three choices: have surgery to do the wash, do chemo or just observe. We decided to do the chemo.  Four consecutive cycles once a week (12 infusions) of carbo/taxol. I start my 4th cycle this Wed.. 8/20. My last CA125 was 100.  I will have a CT scan after my last cycle. Hopefully I will have NED!

artist49 said:

UPSC

I am  65 now and live in NJ.

I was diagnosed at Sloan Kettering with UPSC at age 61 in September. 2010. My stage was

4B, grade 3 and cancer was found all over pelvic area  and in all 40 lymph nodes tested. I

had a hysterectomy which was optimal and then entered a clinical trial at Sloan. 4 months

of carbo. ixabepilone  and avastin  and then continued with avastin for maintenance till

October 2013, I have been NED since Feb. 2011.   My ca125 was 53 at diagnosis and is

currently 1.

Now for the rest of the story -   In may 2012 I was tested and found to be BRCA 2 positive.

! was told  by  the genetics counselor at Sloan that being BRCA  positive can result in longer

remissions - esp. BRCA 2.

But, I'm not taking any chances with a horrific diagnosis like mine. I flew to Chicago  to learn about

diet from Dr. Block. I flew to Durango, Colorado  to become the patient of  the famed naturopath there.

She counsels me on the phone by monitoring my lab tests. She also OKs my diet.

I feel great but every CT scan brings on monumental anxiety.  I have a normal life back and

fear I will lose it again.

If anyone is interested, I will post my super anti cancer AM smoothie.

 

Please post the smoothie,Thanks for sharing.

molimoli said:

I was dx in march,2014, stage

I was dx in march,2014, stage 3 UPSC,   total hysto. on  May 2 ,2014.  mri in June  showed no mets to nodes or omentum.Feeling healthy but depressed.  scans will be repeated Aug 28 to determine course of treatment,  Questioning the benefit of Chemo/Radiation as opposed to using surgery only,if and when necessary.

 

Any advice or information will be greatly appreciated.Thanks.  Newby.

So sorry to hear about the loss of your 34 year old daughter.  UPSC is scary and doable.  I am UPSC stage 3A and am now 7 months NED (No Evidence of Disease).  We thought my cancer was contained in the uterus but after surgery, the doctor said he found a pea sized nodule at the back of my pelvis.  Pathology revealed it had spread.  Chemo. was ordered and the doctor didn't think that radiation would benefit me.  I had 6 rounds of Carbo/taxol.  It was tough but to me it was worth it.  UPSC is an aggressive sneaky cancer.  Please weigh out all your options.  There are so many women who were stage III and IV with uterine cancer that are still with us.   Also, as a daughter, I would want you to tell me even though I just lost a sister.  The more support you have, the better you are.  They need their mom and you need your daughters.     That's just my opinion as a daughter.   I was never blessed with having children.  This disease won't beat us.  We are WOMEN, hear us ROAR.   Best wishes.  I will be praying for you.  If you aren't comfortable with your doctor's options, get a second opinion.  Please read the threads on this board, these women are so knowledgeable and they have so many experiences and encouragement to share.  They have been through what we are going through.  Take care.

Jeanette

artist49 said:

UPSC

I am  65 now and live in NJ.

I was diagnosed at Sloan Kettering with UPSC at age 61 in September. 2010. My stage was

4B, grade 3 and cancer was found all over pelvic area  and in all 40 lymph nodes tested. I

had a hysterectomy which was optimal and then entered a clinical trial at Sloan. 4 months

of carbo. ixabepilone  and avastin  and then continued with avastin for maintenance till

October 2013, I have been NED since Feb. 2011.   My ca125 was 53 at diagnosis and is

currently 1.

Now for the rest of the story -   In may 2012 I was tested and found to be BRCA 2 positive.

! was told  by  the genetics counselor at Sloan that being BRCA  positive can result in longer

remissions - esp. BRCA 2.

But, I'm not taking any chances with a horrific diagnosis like mine. I flew to Chicago  to learn about

diet from Dr. Block. I flew to Durango, Colorado  to become the patient of  the famed naturopath there.

She counsels me on the phone by monitoring my lab tests. She also OKs my diet.

I feel great but every CT scan brings on monumental anxiety.  I have a normal life back and

fear I will lose it again.

If anyone is interested, I will post my super anti cancer AM smoothie.

 

Would you mind posting your secret smoothie recipe?

Although I don't have UPSC, I would love to have your smoothie recipe.  Thanks and I hope your feeling great today!

molimoli said:

I was dx in march,2014, stage

I was dx in march,2014, stage 3 UPSC,   total hysto. on  May 2 ,2014.  mri in June  showed no mets to nodes or omentum.Feeling healthy but depressed.  scans will be repeated Aug 28 to determine course of treatment,  Questioning the benefit of Chemo/Radiation as opposed to using surgery only,if and when necessary.

 

Any advice or information will be greatly appreciated.Thanks.  Newby.

molimoli, I can't imagine what it feels like to lose a child.  I am so sorry to hear this and pray for you and your daughters.

As far as your treatment, UPSC is very agressive, and at Stage 3 you can definitely fight and beat this devil, but it would probably involve the treatment.  As the other ladies say, the treatment is doable, it is scary, but you will amaze yourself. 

If I can make a suggestion, I don't know your family dynamics, but you certainly didn't chose any of this but maybe your daughters would like to help you with this.  If you work perhaps your company has an Employee Assistance Program (EAP) who can help you find those words. 

You have a full plate, more than most, and I wish you peace.

deanna14 said:

Stage 3c UPSC

I was diagnosed in Sept 2008 at the age of 39! I had HDR external and internal HDR and chemo. I am cancer free today!

Thanks Deanna14. Your story is just what I need this week with a scan coming up  first week of

September!  Two things, I find, are so important  on this site  - a) posting stories of survival, like

 Deanna,and b) just responding to people's posts! Debrajo, you are so special that you always

respond! Even in cyberspace, it is disheartening to be ignored.