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upsc stage 1a recurrance

Daughters3
Posts: 18
Joined: Mar 2013

Hello ladies. It's been a while since I've posted anything, but I check in to see how you are all doing. Ro - I hope your cough is better!! I pray for you all often!!

As a quick refresher, my mother was diagnosed with stage 1a in March 2013. We counted our blessings after her 14 biopsy results were negative. She chose sandwich treatment as the odds of recurrance were so good if she did. Yet here we are.

I think that was the hardest part. I know there are no certanties in life, but we really thought this was behind us. The only symptom - her ca125 went from 10 to 50 at her 4 month checkup. She had just had a routine colonoscopy so we thought that might have been the cause. It was not.

There is a 1.5 cm mass in her omentum with some small spots scattered there as per the CT scan (she had her entire body scanned). While I know it is not that bad -  we were hit by the truck again! My Mom is treated at Roswell in Buffalo. Her doctor is kind, but goes by whatever the guidelines are. We spent 5 minutes with him and the entire treatment he said was changed after he met with the pharmacist. My sister and I both felt it was an insurance issue or guidelines they had to follow - not what was the best treatment option. The combination plan he started with ended up being just Doxil alone.

Her port was put in on Friday and we are schedule to start Doxil on Thursday this week. I did like that he was moving quickly. 

We are heading to the Cleveland Clinic this week first to meet with the head of there obgyn oncology dept. I am interested to know what his treatment plan for her will be. I will let you all know. I am leaning toward taking her there each month for her treatment.

On a side note, my cousin (who is a genius pharmacist) recently accepted a position at the Cleveland Clinic in their pharmacy. She spends her days fighting for cancer patients whose insurance denies the drugs their doctor's prescribe. She also finds funding for these patients through drug companies and Foundations. She is my hero!

It is SO HARD to find up to date information on the web about this beast. I am NOT trying to scare anyone further and thought long and hard about posting this information. BUT I felt we do all need to share these "rare" stories of upsc to become more educated. She has said to me she is thankful she went forward with the sandwich treatment or she would be second guessing that decision. I also took comfort in knowing that there are always ways to get the treatment you need - we all just have to keep finding and sharing the information we learn.

My two sisters and I are strong and confident with my mother during the day. We cry a lot at night. We will be with her every step of the way. She is being positive and wants to fight - which I know is a big part of the battle. 

Any advice you can pass along our way? 

Wishing you all good health, happiness and much luck throughout this process :)

 

AWK
Posts: 364
Joined: Mar 2013

Keeping all of you in my prayers.  I was Dx in April 2013 with stage IIIC UPSC.  Without going into a lot of detail my cancer has continued to progress through frontline plus radiation and brachytherapy.  The next treatments for me were Doxil.  I had three and it is viewed as a fairly aggressive course of treatment with success.  In my case progression continued; moved onto avastin and am now on lists  with three top institutions for clinical trials.  I have a complicated genomic structure which explains my progression.  From what I have read your hospital in Buffalo is well regarded but it is always good to seek out other opinions and ideas.  One of the things I have been very lucky with is that my doctors all followed type of cancer first, origin second.  I have been treated following ovarian protocols and as the principal clinician at Ceders Sinai noted - received aggressive, cadillac class care.  

Keep pushing but also take time to enjoy moments and have cancer free days or minutes or hours.  They are so important to me.  I am living fully and enjoying my life while continuing my journey.  I ride horses, work a full time job and do things that I enjoy although I do get pretty beat.  One other thing, I have had some amazing experiences because of my cancer and I am grateful for that.  

Sending hugs and prayers.  Anne

Daughters3
Posts: 18
Joined: Mar 2013

Anne- thank you very much for sharing your story with me. I needed to hear what you said about taking a break from the cancer- we are driving my Mom crazy I think. Just want to make sure we don't make a mistake! Hugs back to you

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello:

Sorry about your mom's recurrence. You didn't say whether or not your mom had a hysterectomy the first time.   Usually if there is cancer found, they will do a hysterectomy and some (like my doctor did) will remove the omentum and appendix.  Nevertheless, finding yourself back into treatments can be depressing.   My initial diagnosis and treatment was in September of 2005.  In July of 2009, I was told I had a recurrence and that it was inoperable.   I got another doctor who decided to do a biopsy.  It was positive and he only wanted to do radiation and he put me back with the practice who told me it was inoperable.   I then went over 3 hours drive to the Cleveland Clinic.   Not only did they remove the mass, it ended up being benign.  They did remove a lymph node that had microscopic cells.  So since then, I go to Cleveland Clinic every 4 months.  I have taken the "wait and see" approach.

Currently I have a 6 cm mass and although the biopsy they did was negative, my PET scan shows a 3.4 reading so we just have been keeping an eye on it.   I also developed a kidney blockage from the brachytherapy and that is being treated also.

So what I am saying, go get the opinion from Cleveland Clinic.   And if you are not compatible with that doctor, seek another.   My initial doctor from Cleveland went to Texas Oncology.   I went with another doctor from Cleveland but switched after a year.   I have had this new one for just a little over a year now.   

And you can ask questions!   If they don't like it too bad!  I do like the Cleveland Clinic - the people are nice there.

My best to you and your mom and sister while you are dealing with this process.

 

Daughters3
Posts: 18
Joined: Mar 2013

It's so nice to hear back- thank you  both!!! I'm so glad to hear of your positive experience in Cleveland Kaleena- you gave us hope! I've never felt so much stress and I'm not the patient. I admire you ladies so much! Btw- my mom did have a complete hysterectomy with her surgical staging. Her appointment in Cleveland isn't till next Wed. I'll report back our findings. Ty again!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Daughters3, please know that none of us could have made it without the love and support from our family and friends.  Your journey is very different from ours.  I can't imagine what my family was thinking when I told them I had cancer, but I suspect they were as terrified as I was.

As previously suggested, maybe doing something special with your mom is what the doctor orders.

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

hi,

we are very much in the same situation. my mom~ 5 of us sisters; but since 8/2012 here we are. we did pray as well.. hoped against hope i suppose that we were done with it after surgery, and intial chemos~ but in nov.  we got the news. so here we are. we had a brief reprieve on my mom; but so ironically surreal.. nov. of last year, my father passed with pancreatic cancer.. so i know the feeling of this is all happening so fast. 

like you we are very supportive and strong with, and for my mom during the day~ and any time away, and at night we cry, and just feel how unreal this all is.

my baby sister called me on the 3rd.  after  my moms 1st treatment of her 3rd rounf of the heavy duty chmo treatments, my mom said to my sister, let's go down the shore, so we will be there for the 4th.  she wanted to get down there, so if she had a reaction, her 1st time on this particular chemo, and i believe it is doxil~my mom was not feeling well. sleeping in the next room, had 100 fever, and was sick  etc. you know the drill.

my sister just said , in amazement.." this is happening. this is happening now"

i knew what she meant. 

but what is there to do; but try everything, keep positive,and live as much of the time as you can together, doing things you like to do together.. most of the time we just sit on the porch, and hang out. spend energy together. 

i wish all of us well. i pray for all of us, and especially for thise f us here who are the ones with cancer, that you heal,tumors shrink, cancer goes into remission..  and you feel peace.. 

God bless, talk to you soon. jennie

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