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New DX,

Gildedrose's picture
Gildedrose
Posts: 17
Joined: May 2018

Just diagnosed, waiting for insurance approval and referral to gynecology oncologist.  Initial gynecologist carefully phrased the dx, just saying it may be early (From biopsy).  I am 60 and never stopped having bleeding, so no way of knowing how long symptoms, as I also have numerous other health issues.  I had a colon resection a year ago, but not for cancer.  I came here because I have no in-person support system and am hoping to connect with others who are/have been in same boat.

cmb's picture
cmb
Posts: 351
Joined: Jan 2018

I'm sorry you've had to join this site, especially given your other health issues. But your gynecologist is correct – a biopsy can indicate cancer, but the type and stage of the cancer will need to be confirmed after a gynecological oncologist performs surgery and a pathologist prepares the pathology report.

While you're waiting for your referral and first consultation with the gynecological oncologist, you may it helpful to read the posts under the following topic "What do you wish someone had told you?" at https://csn.cancer.org/node/314593 on this site.

Lots of ladies responded to that question and provided a wealth of information that many of us, myself included, wished we had known when we started on our experience with cancer.

Several responders on that thread talked about taking someone with them to appointments to provide a second set of "ears." If that's not possible for you right now, consider asking the gynecological oncologist, or others you meet later, if you can record the discussion you have with each of them.

I did record the first few meetings I had with the various professionals (gynecological oncologist, medical oncologist and radiation oncologist) so that I could listen to them again later. There can be so much to absorb at the start of a treatment plan it's easy to miss something that was said during those initial meetings. None of the doctors I met with had any problems with being recorded.

As you learn more about what is planned, come back and let us know. You'll find lots of women here to support you.

It happened to Me's picture
It happened to Me
Posts: 204
Joined: Apr 2014

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

cmb's picture
cmb
Posts: 351
Joined: Jan 2018

Jeanette,

So happy to hear that you're so close to the "magical" five-year mark that is so important to so many of us.  But your advice to stay focused on the short-term is also important to hear since I think many of us (me included), tend to worry about the long-term process of dealing with cancer.

Gildedrose, like Jeanette, I didn't join the board until after I was done with chemotherapy and radiation. But by joining this group early in your journey, you'll have the benefit of the wealth of experience shared by other members. You're not alone here.

 

EZLiving66's picture
EZLiving66
Posts: 1336
Joined: Oct 2015

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's picture
Gildedrose
Posts: 17
Joined: May 2018

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.

oldbeauty
Posts: 187
Joined: May 2012

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's picture
Gildedrose
Posts: 17
Joined: May 2018

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?

cmb's picture
cmb
Posts: 351
Joined: Jan 2018

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.

Abbycat2's picture
Abbycat2
Posts: 642
Joined: Feb 2014

Gildedrose, welcome to our Uterine Board. The ladies here have given you great advice. Jeanette- It Happened to Me- gave you good advice as did the others, and a summary of her experience. The beginning is shocking but that too will pass once you begin treatment. Like Jeannette, I was diagnosed with Uterine Papillary Serous carcinoma, stage 3A. A type II cancer meaning that it is aggressive.  I went through the standard treatment, 6 rounds of Taxol (paclitaxel) and Carboplatin. All diseases have an approved standard of care- which makes sense as insurance companies don’t want to pay for snake oil treatments. These cancer treatments are based on the scientific method- research studies that show efficacy. My first appointment with the gyn onc? I was a basket case but thank God I brought a loved one with me for support. My doc did a Uterine biopsy in his office that day, and it didn’t hurt at all! He was wanting to determine if my adenocarcinoma was Uterine or from my cervix. Fortunately, it was in my uterus so that meant that I did not require a radical hysterectomy.  I was diagnosed in October, 2013 and I am approaching the 5 year mark since my diagnosis. I remain cancer free (NED).

You will discover how tough you really are.

Good fortune with your treatment, 

Cathy

 

Gildedrose's picture
Gildedrose
Posts: 17
Joined: May 2018

Thank you all.  I already had the biopsy and initial cancer diagnosis.  The gyn onc I saw is apparently among top in field (according to hosp website).  He did not do another biopsy, but did do exam and breast exam (i’ve had sore armpit).  I will have a CT scan next week.  He is planning a radical abominal hysterectomy, but wants a second surgical team with him, because of all the abdominal surgeries I’v had, (7) and due to some medical issues, things inside are kind of a jumble.  I also have a giant abdominal wall hernia.  He also ordered a cardiac workup and groundwork for possible blood transfusions.  (I have had to be transfused in the past).  So, obviously, the surgery is major, but at this time they are saying it’s grade 1.  Will hold on to that until pathology reports from surgery, and hope my body handles that ok.  I appreciate youall, again, thanks.

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