New DX,

Of course, no one wants to join this board but sometimes we have to.  I am an almost 5 year cancer survivor.  I was diagnosed in June, 2013.  I had been spotting or bleeding for over 2 months.  I thought this was normal because I was 51 at the time and thought maybe I was going through "the change".  My world changed in June, 2013.  I had gone to a new gyn because my regular PCP wanted me to get checked out by them based on my "bleeding".  The gyn did a pap and it came back with two different atypical cells.  That is highly unusual to have two different kinds.  They did a colposcopy and later in the month, I got the phone call.  Since it was cancer, they sent me to a GynOnc.  I was told by this particular gyn that this was the "best" kind of cancer as a hysterectomy and maybe radiation would take care of it.  I got a CT scan before my first appt.  When I got to the GynOnc, he told me, "you have a very rare kind of cancer.  Normally, women in their 70's and 80's get this form of cancer."  He then proceeded to tell me that radiation was not an option.  Didn't know why, but found out later that the cancer had already spread.  So, the journey began.  My kind of cancer was Uterine Pappilary Serous Carcinoma (UPSC).  Early on, I decided a few things.  1.  I would always have someone who wasn't emotionally involved to be with me at every appointment to write things down that the doctor said.  2.  If I had to have chemo. and would lose my hair, I would cut it off the minute it started falling out and I would not wear a wig.  3.  I was going to talk about my cancer to people so they would feel at ease talking to me  4.  I would have a Caring Bridge so I wouldn't get so many phone calls when I wasn't feeling good.  5.  I would hold onto my faith and find something to be thankful for everyday.     I wrote down questions before each appointment.  After my hysterectomy, they staged it and found it was 3A.    Gildedrose, don't look at the internet, that freaked me out.  CMB had good advice for you.  I had 6 rounds of chemo..    All that to say, is that coming to this board is a good thing.  A place where you can vent, ask questions and shout with joy for the victories.  I found this board after I had finished chemo., so I didn't benefit from all the advice these great ladies had early on, but found solace knowing that there were other women out there with the same kind of cancer as me.  One piece of advice I got from a Breast cancer survior friend of mine was Focus only on the next event, don't look ahead because it could make a person anxious.  Don't presume or assume anything.  If you don't trust your gyn/onc, find another one.  I trusted my GynOnc explicitly.  If you need a second opinion, then get one.  If you have questions, don't hold back.  It is your body.   As of March, I have only two 6 month check-ups until I will graduate to yearly.  I will be 5 years NED unofficially in Jan., 2019 and officially in Mar, 2019.     You can do this Gildedrose!

Jeanette

Jeanette, it is so good to hear from you!!!  You and other women like you who have come out on the other side of this nightmare in one piece give us all hope it can happen to us too. 

Would you mind repeating what you just said in a new thread so that new ladies could easily see this??  I'm afraid a new person coming to this site would think there is little hope of complete recovery when there absolutely is.

Thank you so much for sharing your story with us!!!!  I know it gives me a lift to see long-time survivors thriving.

Love,

Eldri

Gildedrose said:

Thank you

Thank you all.  It’s been a battle just to get in to a gyn oncologist.  I am on medicaid, and the provider i am assigned to does not have a gyn oncologist in their network.  Fortunately, my gynecologist and her assistant went to bat for me and finally were able to get Insurance to make an exception.  I live in a metro area, so will be being treated at a Universit/Research medical center.  

 

I am a widow, and moved back to the U.S. after my husband passed, leaving friends and support systems behind.  In the past 3 years I’ve had several surgeries, nearly died of sepsis, had 2 other bouts with sepsis caught early, had a drain in my side for 2 years (gone now) and other health issues, all of which have kept me rather isolated.  I have no friends here, no outside contact.  So, taking someone with me isn’t an option, however I do appreciate the advice to record appointments and will do so.  I do live with my daughter and her family, so i have some support.  My daughters work is demanding and high stress, and this is her busy season (60-70 hour weeks) so I am trying to make this easier for her and not ask anything of her.  I also have a 92 year old mother that is mentally ill to deal with (she lives elsewhere thank goodness).

 

 I appreciate the advice to not get ahead of things.  At the same time I am prepared to hear bad news, as I’ve had symptoms for over two years, but the “more urgent” health issues took precedence.  I have already learned a lot here and thank you for being here.  Sorry if I have shared too much.

It is so welcome to hear that your doctor who is not a specialist took the time to work with your Medicaid insurance plan to make sure you are seen in-network by a qualified surgeon/specialist.  Medicare is still a ways away for you so these battles are a headache you don't need.  You should not be pressed to accept other than the gold standard of care.  So sorry to learn of your other health challenges.  Perhaps you might be someone who would be comfortable in a women's cancer group, even for once a month meetings.  It might make you feel less isolated.  Also, be on the look out for a program called "Look Better, Feel Better."  The American Cancer Society sponsors these groups and even if you are not ordinarily into make-up (I'm not), it still was an enjoyable way to spend some time among your sisters in treatment and get a goody bag full of beauty products, and lessons about how to apply products like brow liners for when yours fall out (chemo) and how to liven up your eyes when you don't feel well and your eyelashes are also gone.  There might be a "Gilda's Club" in your area; that's another supported place that offers friendship and useful presentations about cancer and self-care.  Come back when you know more about your situation and the type of support services that might be useful to you, and lots of ladies will chime in with ideas to help you make this as low-stress as possible.  Best wishes, Oldbeauty 

Gildedrose said:

Update

I have appt with gyn onc Tuesday.  Not really sure what to expect, but guess I will find out.  Will be a long day because it’s a 2hr ride (3 busses and a train) one way.  I ended up telling my mom today (hadnt planned too) and she basically has me termnal already, but i guess that is because she’s lost so many family members and friends.  she always said she was glad I didnt have her families gens (I’m adopted) so I wouldn’t get cancer. So much for that.  Every pain i have i start worrying...this normal?  What has first gyn onc visit been like for others?

Because we already knew that I had uterine carcinosarcoma (MMMT) cancer from the pathology report after my D&C/hysteroscopy, my meeting with the gynecological oncologist was very specific in terms of things to do before surgery (get a colonoscopy, bloodwork, etc.) and talking about the surgery and its aftermath.

Once I learned that I had cancer, I too was concerned about every little ache and pain. And even though I completed treatment last year and am NED at the moment, I still worry. I hope that this will fade in time.

I'm glad that your original health care team went to bat for you with Medicaid so that you are able to see the gynecological oncologist, even though it will be a hike to get there.