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Gynecological Cancers - Ovarian Cancer - Uterine Cancer - Vaginal Cancer - Endometrial Cancer
HysterSisters
GYN Cancers and the HysterSisters

There is nothing scarier than being in a doctor's office or receiving a phone call after an exam and hearing the "C" word. Its frightening, forcing the hearer of the words to use energy to process the information with a thousand questions going through the mind.

Join Us For Support

There are several different types of gynecological cancers, some more known than others. Because HysterSisters isn't a medical information website, covering the details isn't possible. But we can (and do!) offer support!

On this page you will find the different aspects of support offered at HysterSisters.com for cancer concerns. Uterine cancer. Cervical cancer. Vaginal cancer. Endometrial cancer. Ovarian Cancer.

HysterSisters offers live discussions in our forums for cancer related questions for diagnosis and treatments. We offer resources links for great medical websites to help fill in the details from a medical point of view. We provide articles written specifically for the HysterSisters that may help you as you make your way down the path of cancer diagnosis and treatments.

The most important thing to know is...you are not alone. Come meet the HysterSisters who will offer their experiences wrapped in hugs.

Join HysterSisters.com and visit the HysterSisters GYN Cancer Forum.

Find a GYN Oncologist

If your doctor has said "cancer", your mind might have been suspended as all the thoughts and fears crowd out the accompanying words. Initially the communication with your doctor will be one way: doctor to patient.

We encourage you to focus. Gather your strength from family, friends and your faith and head into battle well-equipped.

Often the doctor who provides the initial diagnosis is not a specialist in oncology. While it is understood that you may feel emotionally attached to your physician, it is important for you to gather other opinions for your diagnosis and treatment options from a GYN oncologist.

Ask your doctor for a recommendation. Ask friends and co-workers. Find other women who have had a similar diagnosis and ask for the name of their oncologist.

Your journey from diagnosis through your treatment requires the plan and handiwork of a specialist. Partner your health needs with a GYN Oncologist!

Coping with Cancerhead

Submitted by Cathy Thomas

Any woman receiving a cancer diagnosis is likely to experience a wide range of fears. The best defense against these fears is accurate information. Although it may be difficult to imagine living with cancer, it is possible to learn to cope with the inevitable fears that accompany this disease.

I vividly remember the day I learned I had cancer. My doctor called with the pathology report from my D&C which stated I had endometrioid adenocarcinoma, FIGO grade 2. He reassured me that it was the "best" type of GYN cancer to have in that it tends to be slow-growing. Devastated, I hung up the phone. He would see me in his office in a couple of days to give me more detailed information on my diagnosis and discuss my initial treatment, which would be a total abdominal hysterectomy and removal of both ovaries. The surgery and staging of the cancer would be performed by a gynecologic oncologist, a doctor who specializes in the treatment of gynecologic cancers.

I would describe myself as a woman of strong faith with a positive outlook on life. However, with the cancer diagnosis came a deluge of "what-ifs," and cancer began to dominate my thoughts. Fear, anxiety, depression, anger, and sadness were common emotions that plagued me all hours of the day and night. In my quest for information, I discovered the Cancer Concerns Forum on the HysterSister's website. I learned that my "what-ifs" had a name - cancerhead. Time and again this term came up as women described their fears regarding cancer. I found that I was not alone. Psychologists and other experts agree that women diagnosed with cancer respond in similar ways.

1) Denial – There must be some mistake.
2) Anger – Why are you telling me this?
3) Why me? – What did I do, or not do, to deserve this?
4) Resignation – I can’t help myself; it’s beyond my control.
5) Acceptance – I will fight this with everything I’ve got in me.

As I struggled through these various stages, I felt like I was on an emotional roller coaster. I would not know the stage of the cancer in my uterus until the pathology report came back after the surgery. The stage would determine the course of treatment and my prognosis. I cried frequently due to the stress of waiting for doctor appointments and test results. I questioned whether the cancer had spread to other parts of my body, whether I would need to have radiation treatments, or even worse in my mind, chemotherapy. I did not want to take this journey or deal with the uncertainty of my future. All of these feelings were normal, but waiting for the answers was almost unbearable. Cancerhead is powerful!

On my third day post-op, my pathology report was available. The stage of the cancer was 1b, grade 2. The cancer cells had spread beyond the lining of the uterus, but less than 50% of the uterine wall had been invaded. This meant no further treatment was deemed necessary. I will be followed closely for the next five years, but my prognosis is excellent!

End of story, end of cancerhead, right? Wrong! Although time and healing lessen its effects, all cancer survivors know that cancerhead can come knocking at the door at any time. Women undergoing radiation treatments or chemotherapy must conquer new fears of the unknown. Fear of recurrence is common for all, and cancerhead is likely to show up a week or two before a follow-up exam. Waiting for test results is particularly stressful. Simple aches and pains or symptoms of any common illness can lead to fear that it must be cancer. And so it goes. I had a mild attack of cancerhead before my first follow-up exam. The gynecologic exam was normal, but a mammogram came back abnormal with a recommendation for breast biopsies on two suspicious masses. Cancerhead returned with a vengeance! Even though statistically 80% of breast lumps are benign, I felt myself spiraling into depression over the "what-ifs."

If cancerhead cannot be entirely eliminated, can it be minimized? The answer is "yes." I have adapted nine suggestions from a breast cancer website, which I feel would be helpful to those with GYN cancer as well.

1) As you begin gathering information to make decisions, get to know the people on your medical team and make every effort to meet them in person. Turn faceless doctors into known resources. These are the people you've hired onto your team to help you. You'll find out who is the best communicator, who can answer which questions, who is available to help you when you need it most.

2) Find a doctor who communicates with you in a way that is comfortable for you, who invites your questions and takes your concerns seriously, who gives you as much or as little information as you feel comfortable with at any given moment.

3) Find out what to expect (from tests, procedures, treatments). Minimize surprises.

4) Make plans with your doctor about how to receive test results in a prompt way. If possible, try to schedule important tests early in the week, so you don't have to wait over a long weekend, when lab work may slow down or doctors aren't communicating with each other.

5) When you know you're going to have a challenging week (a test coming up or a round of chemotherapy), don't plan to do things that are stressful for you (balance the checkbook? make Thanksgiving dinner for twenty? run a big meeting at work?). Use your support systems—friends, movies, prayer, biofeedback—anything that works to help you get through it.

6) If well-meaning people try to tell you stories about others struggling with cancer, stop them RIGHT AWAY and say: "I only listen to stories with happy endings!"

7) If you reach a point where difficult emotions are getting in the way of your functioning or taking care of yourself, speak with your doctor about the role of medications that might help ease your anxiety, depression, or sleeping problems.

8) Join a support group—a place to share your cancer experience openly with people who understand. Do whatever makes you feel connected to others in a positive way, as a woman who is moving beyond cancer.

9) Work on ways to feel more positive about your life: Seek out productive, life-enhancing experiences; accept yourself for who you are; spend time with positive people who affirm who you are and how you've chosen to deal with this disease.

I found several of the above suggestions helpful in dealing with cancerhead. However, while having a positive attitude is a worthwhile goal, it is not easily attained. According to Kleban (2002), a social worker who supports women dealing with cancer, "Having bad feelings and down days is neither good nor bad - it's just normal.” The best reason for having a positive attitude is that you will enjoy better days and find your emotional recovery less difficult.

As for the rest of my story, the breast lumps were benign. Once again, I have swept cancerhead under the rug - at least for now. Most women, including myself, find that working through cancer fears makes them stronger. Reading advice and encouragement from hystersisters who have traveled the road before me with undeniable courage and strength, often brings tears to my eyes. I have learned that despite all our fears, there is hope.

- Read the full article with footnotes and suggested reading here


HysterSisters
From the HysterSisters Cancer Forum

If you haven't browsed through the HysterSisters Cancer Concerns Forum, you are missing out on the core of our website. Our members support each other through diagnosis and treatments and waiting with hearts of gold and a basket of kindness and spunk. Come join us!

Recent Discussions From the HysterSisters Cancer Forum
having difficulty holding on to being positive

Posted by jennneil

I'm having such a hard time with the panic and fear and having hard time trying to focus on the positive, not negative. I've been told (and shown in a book by the oncologist) that there is a 4 percent chance that the cancer is in the lymph nodes. Why can't I focus on the 96 percent chance that its not. In my head, I've now got it all over my body and am dying. The oncologist said "I expect you to be cured" and "you are not going to die from this". But my anxiety is nearly overwhelming. And I won't know anything for sure until after they do surg ..... [Read more of this discussion]

Got my results from PT Scan

Posted by janlar

Good News! I picked up my PT Scan results from the hospital. My DR. appt. is next week. The report shows no tumors! yea! From what I see, no return of the beast! I am so happy, one year down! Looks like I have Osteoarthritis causing the pain in my upper back...degenerative joint disease. I will deal with that. Thanks ladies for all your prayers and good wishes. I had really gone to a scary place in my mind with this thing. I know you understand God Bless the sisters. I think I will celebrate St. Patty Day tomorrow ..... [Read more of this discussion]

Pre-follow up butterflies and recent commercials

Posted by Vega

First my 4 year appt is coming up on Thurs. As always I have mad butterflies in my tummy. I'm also growing more nervous about what happens next year when I reach the 5-year "cured" mark. Will my gyne/onco release me back to the regular gyne? Could I make it possible to schedule yearly's with my gyne/onco? Has anyone else managed the yearly's with the onco even after the 5 year mark?

I don't have much faith in the ob/gyn after they saw the polyp and still insisted that (they believed) it wasn't cancerous. And just the fact that it was missed.
..... [Read more of this discussion]

So many questions.....

Posted by Sledge

Hi. Thank you so much for this site and everyone's willingness to share info and stories.

3 weeks ago I was dx with adenocarcinoma of the endometrium with prominant squamous metaplasia 1B

I see a gyno-oncologist next week (there is only one hospital in the state with this specialty) about 2.5 hours away from home. I have so many questions....can anybody help?

1. Does the description of the cancer on the pathology report (above) mean it is an early stage?

2. I was told by my primary care doc that after talking over the patholog
..... [Read more of this discussion]

No hormones = me a hot mess

Posted by Ialwaysworry

I stopped my estrogen replacement in December. Now I have been operating on zero hormones. I am absolutely not myself and others notice. When I was on the estrogen I noticed I was happier, more alert, had energy, the biggest thing is my moodiness, my moods were "even" and these hot flashes are actually started to get on my last nerve.

Anyone else go thru this? When I go to chemo tomorrow I am going to mention about getting back on estrogen and possibly something bio-identical. I want a little of my normal self back, I can not even stand my
..... [Read more of this discussion]

question for those who had radiation

Posted by arunner

To those who have had radiation, has anyone noticed any little bumps on the skin just outside the vagina?
I had some bleeding a few months ago in this area, just before I had my followup with gyne/onc and the bleeding she said was just from the radiation skin changes.
I will be seeing her again in 2 weeks, and I assume she is going to say the same thing about this, but I was wondering if anyone else several months post radiation had skin changes in this area.
thanx
Janet
..... [Read more of this discussion]

just a mess

Posted by cornponesally

Had my hyster in sept last year, still have ovaries. Two weeks out from surgery I became majorly depressed (had never been before) after hearing my uterus was full of rapidly growing precancer.
Since then I have continued to take Lexapro and Ativan...I have been doing great until recently. I found out I will need to have a TVT surgery...yay for more surgeries..
On another note, when they did the ultrasound for testing they found my left ovary to be four x's bigger than it should be. I am scared that I will hear the cancer dx again.
I have
..... [Read more of this discussion]

stage 1C - over half way thru uterine wall

Posted by jennneil

Is it possible that it can be grade 1 and stage 1C because its gone a little over half way through uterine wall and still not be in lymph nodes? My onc said only 4 percent chance of lymph node involvement but I keep reading people whose staging did change due to node involvement. I'm going to have nodes removed April 5th cause cancer was diagnosed after hysterectomy. I don't ever read posts of people who had cancer in the uterine wall and are part of the 96 percent that don't have node involvement! Where did THEY go? ;-). Jenn ..... [Read more of this discussion]

Breast Cancer Survivor should I have hysterectomy?

Posted by SusieQ1

I have been told I am "high" risk for gynelogical cancer because I had breast cancer. I took BRAC 1+2 and they were negative. As a preventative measure, my gyne-oncologist wants to do a hysterectomy & ovary removal. I just had a D&C and results were normal. At what point do I have surgery and at what point do I say no to removing any more of my parts? I am 54 so I do not need the parts, but they are my parts and I am terrified of being thrown into surgical menopause. I am still perimenopausal......I know 54 is on the older side for not having ..... [Read more of this discussion]

Isnt a TAH supposed to fix everything?

Posted by Teacher_Mez

Salutations!

I am feeling somewhat frustrated at the moment so please bear with me! I had a TAH on the 6th of July 2009 and the biopsy results came back with an Epithelioid Trophoblastic Tumour (Gestational Trophoblastic Disease). Righteo, PET scans and blood tests later, a monitoring regime was put in place. 3 weeks ago, a pap smaer (vaginal vault smear) came back as abnormal with possible HPV and VaIN 1 and to boot, granulation from the scar tissue.



So this Wednesday I will be having laser treatment for VAIN 1, a
..... [Read more of this discussion]



Browse the entire GYN Cancer Concerns Forum - [Click Here]







HysterSisters
Our Cancer Stories

This information has been gathered and prepared for you. The HysterSisters call these "Checkpoints" as there are specific points along your surgery timeline where information might be more important to you.

Most Recently Submitted Cancer Story
Cancer Surprise (long!)
Submitted by RangersFan

I started my period when I was 12. I turned 34 in October 2009. The entire time I have been menstruating, my periods have been really irregular and heavy. When I was a teenager, I went on the pill both as birth control and to help regulate my cycle. This helped with the cycle but not so much the heaviness. Other than this minor blip, I've been disgustingly healthy - no surgeries (not even tonsils), no major illnesses.

As I got a little older, it was up to me to schedule my own exams. I went off the pill for a few years but in 1998 I decided to go back on. I scheduled an exam with the local Planned Parenthood. My pap smear turned out to be abnormal and I underwent a colposcopy and cryotherapy. I stayed on the pill for about two years but then my husband had a vasectomy, so I went off it (and promptly never scheduled another exam).

Fast forward to mid-2009. I'm not on the pill, I haven't had an exam for about ten years (I know, I know), and I'm not concerned about birth control at all. My periods are a little more regular, but just enough to be maddening - I'd have three months on the same day and then the fourth month would be a complete surprise. Aunt Flo usually showed up at 2am, and I would be up and down out of bed until 6 am changing tampons and pads (I always had to use both). This was OK because usually I could still go to work without worrying. In the later summer it got a little worse - sometimes I'd get my period when I woke up to go to work and then wouldn't be able to leave the house. I have the ability to work at home, so while this is inconvenient it's not the worst thing in the world.

In August, I got my period as I was walking into the ballpark for a Rangers game. This was the absolute last straw. I decided that when the baseball season was over, I was going to find a GYN and get back on the pill.

Of course, I procrastinated. I didn't get around to actually scheduling an appointment until the beginning of November. In hindsight, I think in the back of my mind I was worried about that one abnormal Pap test. Anyway,I picked a GYN via my insurance provider's website and scheduled an appointment for the earliest possible "new patient" time - December 1st.

At my initial exam we discussed my desire to get my period under control. She thought it sounded like PCOS and did some blood tests. A week and a half later her office called to say that yes, it did look like PCOS and they would like me to come in for an ultrasound to confirm it. All my other tests (Pap, etc) were normal.

December 17th I had an ultrasound. The ultrasound confirmed PCOS, but it also showed a really thick endometrium. Since I should have actually been having my period at the time (I was late), this was a concern. Before I left her office, I also had an endometrial biopsy. This was when we first discussed hysterectomy as an option for me.

My biopsy came back as "complex hyperplasia". We scheduled a D&C for December 30th, but my doctor reassured me that endometrial cancer was extremely rare in women my age and that while she would probably recommend hysterectomy, it was most likely not cancer.

On January 4th, my doctor's office called to say that my lab results from the D&C had come back in and that it was "worse than expected". I just knew it was cancer - really, what was going to be worse than what we had already comfirmed? January 7th I went in and sure enough, I was told that I had a grade 1 endometrial cancer. We discussed the options for surgery. My gyn performs daVinci hysterectomy along with the usual types, and she recommended this right off the bat. She wanted to schedule my surgery with a gyn-onc she often worked with, so I left without a surgery date scheduled. She also wanted to discuss surgery options with my insurance company to make sure they would cover DVH.

Things really picked up from here, or maybe I was just in shock form the diagnosis. I had the hardest time telling my mom - in August 2007 my dad was diagnosed with extremely aggressive lung cancer (he had never smoked) and he passed away in September 2008. I stressed that my gyn felt we had caught it very early and that my prognosis was likely to be excellent. My husband was fantastic during this time.

January 13th, I had a surgery date set for 1/26. My gyn would perform the bulk of the surgery with the gyn-onc assisting. If they determined they needed to take lymph nodes, they would switch roles. I signed a consent form to take my ovaries also, though we did not think this would be necessary.

My surgery went fine - I did lose my ovaries, but I knew this would be a possibility. I was told when I woke up and returned to the land of the living (as opposed to just being awake) that they had also taken out three lymph nodes that looked "inflammatory", even though they weren't enlarged, and that they had done a pelvic wash. The other surprise was that my tumor had actually come back since I had the D&C, and that because it was so aggressive it was actually considered grade 2.

Y'all, the next week was the longest week of my life. Not only was I trying to recover from major surgery - the first surgery in my life - I was dreading the lab results. I alternated between telling myself that there was a very small chance my cancer had spread and telling myself that I've consistently beaten the odds in the wrong way. I scheduled my one week post-op with my gyn's office for 2/4. On 2/2, my gyn-onc's office called to say he wanted to see me the next morning. That night, I cried myself to sleep with worry.

Thankfully, my gyn-onc was able to tell me that my lymph nodes were clear, there were no cancer cells in the wash, and I should not need any further treatment other than close follow-up. He also told me that due to my age and family history, he felt that it would be fine for me to use HRT - that the risk would outweigh the "quality of life" issue. The plan right now is that I will see my gyn in six months (after post-op, of course) and get a pelvic exam, then in a year I would see my gyn-onc for another one - in essence, they would both be in charge of my followup. My gyn actually gave me a copy of the lab report form my surgery (I didn't even have to ask!). My cancer was staged 1A, which was a HUGE relief.

I will continue to update as I go through followups. For now, I am so grateful to have found this site - I would not even have known to ask about HRT after cancer without it.


Our Invitation - Submit Your Story

Hystersisters inspires members and visitors through various journeys including the diagnosis and treatments of GYN cancer. You, each of you, inspire and encourage each other with your words of support and your very own personal journey's story.

We invite you to document your journey for the strength and encouragement of others. Submit Your Story here (You must be a registered member to submit your story. Join here.)


Browse More Cancer Stories

Cancer Surprise (long!) - submitted by RangersFan

My Cancer Story - submitted by dshadow1963

Cervical cancer found after hysterectomy - submitted by edsell5

My Cervical Cancer Story - submitted by larc04

Clear after almost 7 years.. - submitted by vilasini

The "C" word: Is my ego in worse shape than my uterus? - submitted by Irescuedogs

Ready for the 2nd half of life! (very long) - submitted by Onken

There is hope for survival! - submitted by millet4261

cancer found after RSO, Radical TAH 6 weeks later - submitted by HysSis2009

Preparing for Radiation/Chemo - submitted by beblessed

I survived - submitted by butterfly40

Endometrial Cancer at 32 - submitted by reggyosu

Cancer as a sabbatical - submitted by Anna1961

My cervical cancer story - submitted by limolady

Always Laugh, my Cancer Story... - submitted by crystalsunshine

I am woman. I am strong. - submitted by BlueFall

Another cancer story: Leiomyosarcoma - submitted by Newcal

My story - We didn't expect to find endo cancer - submitted by tauruslady

My Story- Adenocarcinoma in situ - submitted by zambezi

Stage III endometrial cancer in 2005 - submitted by dking

Ovarian Cancer IIIC, Grade 3 age 31 - submitted by pokadot

My Story a Year Later - Living with MMMT/Carcinosarcoma - submitted by bj444

Cancer: It can happen to anyone - submitted by Nessie

to much cancer - submitted by lunaticb5

Lieomyosarcoma fears - submitted by m1chelez

Peace in the Storm - submitted by Peaceful Storm

I survived cervical cancer - submitted by Codemannorth

My Story - submitted by Ialwaysworry

Thanksgiving-The Princess and the Toad - submitted by sptgplyr

Uterine tumor - submitted by Carriana

Leiomyosarcoma at age 33 - submitted by Singa

Stage 1a ovarian cancer at 37 - submitted by desertday

My Story -Stage 1A Ovarian x 2 - submitted by Alsgal1070

A year of many losses - submitted by vikingprincess

Cancer of Vulva - submitted by Chipper2

my niece Alicia - submitted by southern1

It can happen to anyone - submitted by Krissey

endo cancer x2 - submitted by jewels73

making it through the holidays - submitted by pritynpink79

Surviving Christmas with Cervical Cancer - submitted by jitter bug

Papillary Serous Uterine/Endometrial cancer - submitted by born ready

Endometrial Cancer - The Surprise - submitted by Pink Peony

Summer of many losses... - submitted by Mellybug

Cervical cancer 1b1 - submitted by Jasmine3

Still Going stronG!!!! - submitted by vilasini

Ovarian and uterine cancer at 34 - submitted by CHRISTMASANG

5 years Cancer Free! - submitted by Miss Patches

Itinery for life - submitted by juliao

Ovarian Cancer and European Vacation - submitted by tinyrufus2006

Cervial Cancer in situ - submitted by kelpn

Browse ALL GYN Cancer Stories of Bravery



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