Roll Call For UPSC only

It happened to Me said:

Welcome to the Group of Peach Sisters

I was diagnosed with UPSC June, 2013, complete hysterectomy July, 2013 and path report said it was Stage IIIa.  My reg. gyn only saw endometrial cancer  on the original path report (and thought only hyst. and maybe radiation), so it was a complete shock to find out it was an aggressive cancer and I'd probably have chemo. based on path reports.  So, they found a little tumor in the uterus, found some on the left ovary, a pea sized tumor on the back of my pelvis and some on the paracolic gutter and positive pelvic wash.  My gyn. onc didn't feel radiation would benefit me.   I ended up having 6 rounds of carbo./taxel beginning August, 2013 and ended Jan. 2, 2014.  

I just had my 1 year post treatment check-up and I am No Evidence of Disease (NED).    I'm surprised that your doctor is not at least doing radiation or chemo. even at Stage I with this aggressive of cancer, but I also know that different doctors have different protocols.  I'm glad you are going for a second opinion.

This is a great group of women to bounce things off of, to gather information, to laugh with and cry with and everything in between. 

Keep us posted.  We are here for you.

Jeanette

I'm so glad you are going for a second opinion since  the current protocol for UPSC in even an early stage is chemo and brachytherapy.  Who knows what it will be a year from now but all we can do is be aware of the latest science and make our decisions accordingly.  I'm a retired nurse who abhors the notion that our society is big on a pill for everything so it wasn't easy to sit there and watch poison dripping into my body but it seemed my best option.  I want to stick around as long as I can to share my grandchildren's lives.

take care and keep coming back.  This site is my anchor.

Delia1969 said:

Brand newbie UPSC age 45

Hi,

this is my first post.

I learned I had UPSC 2 weeks ago, & am 5 days into recovery from my hysterectomy. will get pathology report in 2 days.

based on what he knows pre-report, my GYN oncologist, who performed the surgery, believes it's Stage1. But he says stages don't make a big difference, he called UPSC a "nasty" cancer, & said he won't recommend radiation OR chemo because he considers them worthless against future growth. He wants to do obvs only, every 3 months.

i will be getting at least one second opinion on post-surgery path options. Any doctor recommendations in LA? 

I look forward to reading stories of all your struggles & little victories, & sharing mine.

Details about me: I'm 45, never been pregnant, extremely athletic. I believe my cancer is a result of polypectomy 10 years ago (but of course that's just speculation).

xDelia

Delia1969 said:

Brand newbie UPSC age 45

Hi,

this is my first post.

I learned I had UPSC 2 weeks ago, & am 5 days into recovery from my hysterectomy. will get pathology report in 2 days.

based on what he knows pre-report, my GYN oncologist, who performed the surgery, believes it's Stage1. But he says stages don't make a big difference, he called UPSC a "nasty" cancer, & said he won't recommend radiation OR chemo because he considers them worthless against future growth. He wants to do obvs only, every 3 months.

i will be getting at least one second opinion on post-surgery path options. Any doctor recommendations in LA? 

I look forward to reading stories of all your struggles & little victories, & sharing mine.

Details about me: I'm 45, never been pregnant, extremely athletic. I believe my cancer is a result of polypectomy 10 years ago (but of course that's just speculation).

xDelia

Hola Delia,

I am sorry you had to join this group, but happy you looked for support.

I live in San Diego. My Gyn/Onco is Afshin Bahador. I was diagnosed at the end of 2010 with Adenocarcinoma, Grade 3 (Clear Cells), Stage 2 because of invasion of the cervix wall of more than 50%.

I had chemo for 6 months, no radiation. I never had a second opinion; since I thought my doctor’s recommended treatment was logical (I researched treatments online). In fact, his recommended treatment was aggressive because of the type of cancer cells. I do think it is smart to get a second opinion, so you are on the right track!

I am 46, 42 at the time of diagnosis, never had kids, and weight 117 pounds. One thing my doctor told me was that having children is one of the risk factors to develop this type of cancer, along with overweight, menopause, after 60 and genetics. I was none of the above, except for never being pregnant.

I have a question, what is obvs? I hope you do not min me asking.

Hang in there, you came to the right place!

AWK said:

Hi!

So sorry you joined the club but happy that you found this group.  These women give me so much enouragement!  I live in the San Fernando Valley and am treated at the Leavey Cancer Center in Northridge.  My lead doctor there is Dr. Juan Alcantarr or any of his partners.  Their practice is ranked in the top 100 nationally. The team is affiliated with UCLA.  You definitely want a second opinion.  You will find that almost all of us have been treated aggressively with chemo and radiation (in many cases).  I got a second opinion at the City of Hope in Pasadena Dr. Christina Yeon, my initial diagnosis was from Dr. W. Michael Lin (gyno onc surgeon) who joined City of Hope in the last year.  Dr.  Robert  Morgan  at the Duarte campus  is one of the top gyno oncologists in the field nationally.  UCLA or Cedars are highly recommended too.  i will dig out the name of the doctor at UCLA who is consulting on my case too.  

In April 2013 I was diagnosed Stage IIIC, second opinion said Stage IVa because of the para aortic involvement and distance from the tumors.  Either way the treatment regime didn't change.  I had a softball sized tumor in my uterus, 81 percent uterine involvement, a walnut sized tumor on my right ovary, cancer in my cervix and three lymph nodes.  All pelvic lymph nodes were removed along with TAH and omentum.  

Hang tough and fight hard.  Stay strong.

6 carbo / taxol treatments, once every three weeks.  28 topical radiation treatments daily and three brachytherapy treatments, once a week.  

NoTimeForCancer said:

Delia, I am sorry you have

Delia, I am sorry you have joined our club, but welcome.  A lot of here who have been Stage 1 have received the chemo/radiation treatment.  I know we say be careful what you read on the internet but I have seen some reports where there is a question if radiation is necessary but chemo is always given.  I believed because it was caught (miraculously) at 1A I would not need treatment but it could be a possibility after review.  Well, of course I was devastated to hear I had to have the full monty of treatment but I realized that it was more preventative in nature to kill any random cancer cells floating around. 

PLEASE get a second opinion on treatment.  UPSC is incredibly agressive and observation is not a treatment I have seen or heard from the leading members of the medical field.  The Foundation for Women's Cancer, which ONLY is in support of "Below the belt" cancers, provides a list to search for a gynecological oncologist in your area.  Here is the link to their site:

http://www.foundationforwomenscancer.org/find-a-gynecologic-oncologist/

 

Thank you for this link!! And your strong encouragement about getting further opinions.

my current gyn onco comes highly recommended as "the best" from 5 independent referrals, but yes, I def will get 2nd & 3rd opinions. Thank you!!!

NoTimeForCancer said:

Sorry for all the posts,

Sorry for all the posts, I just want you to have the information I think you might find helpful.

http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=842

http://informahealthcare.com/doi/abs/10.1517/21678707.2013.847365

Thank you, this is great xx

Delia1969 said:

Beth karlan

Thanks AWK,

I will try to see her for a consult. UCLA doesn't accept my lame insurance but I'll pay out of pocket for some things if necessary.

They are really flexible on insurance.  And if she can't ask for recommendations to other doctors.  They all seem to really be cooperative with this stuff.  Good luck.  Hugs.  Anne

Fayard said:

Hola,
Yes, I am, thank GOD!

Hola,

Yes, I am, thank GOD! Thank you for clarifying. Let's stay in touch. Here is my personal email address, in case you want to chat: luisafayard@yahoo.com. I may come to visit you or you can come to visit San Diego!

You always have made me just feel great. Lovely you're doing well. I'm in Santa Rosa, just north of San Francisco. Going to the JC here in town with my 19 year old grand-daughter. Michigan was just tooooooooooooooooooooooo cold for us.

Your friend,

Claudia

lkchapman said:

UPSC

Laura. Diagnosed in 2009 at age 46 with stage IIIC2 UPSC. Treated at MD Anderson with up front extended field pelvic XRT and cisplatinum, 3 HDR treatments, then 6 rounds of carbo/taxol combo. NED since.

Hi Laura,

how are you doing now? I had about the same diagnosis, age 45, & am just in beginning stages of treatment.  

xxDelia

Delia1969 said:

Hi Artist49,
 
How are you

Hi Artist49,

 

How are you doing now?

Would you you be willing to share the info about your naturopath in Durango & the Dr Block you mention?

I'd like to find a naturopath or integrative oncologist to advise me.

xxDelia

Thank G-d I am still in remission, September will be 5 years

since diagnosis and my doctors at Sloan   constantly express

astonishment. I first went to Dr,  Block after  1 year of remission.

Problems - too many supplements, no contact with Dr. Block

after initial visit, diet kept me hungry all the time.

Then I travelled to Durango , Co. to Dr. Winters at Namaste

Health Center. Excellent!!!  Excellent diet,  easy email communication

with Dr. Winters (she answers immediately), she's an amazing, warm,

brilliant  person who really cares.    You will always have someone to rely on!

She has given me excellent advice.