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Newly Diagnosed...what next?

FightingSpirit
Posts: 28
Joined: Feb 2013

Hello,

 

I was diagnosed on Monday, 2/4/13, with endometrial cancer as a result of a biopsy.  Based on the conversation with my Gyn, it seemed that this would be fairly straight forward and routine....surgery, follow-up treatment decisions if needed.  However, after spending all day Tuesday reading and researching, my positive, fighting spirit is being overwhelmed and I am beginning to feel a bit of fear in the pit of my stomach.  This may take a while and may not be easy to treat/overcome.  Over the next few weeks, I am literally going to be making decisions that will determine if I live or die.  Hope this doesn't sound melodramatic.

 

My first onc/gyn appointment is scheduled for next Tuesday and I am beginning to dread it.  OMG...I have an ONCOLOGIST!!!  Will I have a late stage aggressive cancer or an easy to treat localized tumor?  Will I need radiation before surgery..if surgery is even an option?  The research has really thrown me into a tailspin.  On Monday I felt in control and now I feel like I am in a surreal nightmare.

 

So...I am reaching out to you ladies to find out what your experience was for your first gyn/onc appointment.  The fact that it is 2 hours makes me wonder what the heck we're going to talk about or if there will be additional tests that day.  

 

Also, what did you do to reign in the creeping fear?

 

Thanks,

Andrea

 

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

First, slow down and breathe.  This site and the ladies here will be able to help you get through this. Yes do your research but until they do the surgery they cannot tell you a stage or the extent of where the cancer is.  Unless they want to do a CTscan or Pet Scan. before hand.  I too freaked out when my gyn dr called me after a D&C and said there were cancer cells in the uturus.  She set the appointment up with a gyn onc dr within UT Southwestern Medical University and I began my journey back in April 2011.  STAY OFF THE INTERNET.  Easier said than done but if you do go there, make sure you look at what the reports are covering most data is from the 90's and early 2000's.  It is out of date.  Treatments and statistics have advanced but the reports have not.  There are ladies on this site that are long term survivors.  Your name is good because it does take a fighting spirit to go into this battle and a postive attitude. Will add you to my prayer list. Make sure you get a gyn onc dr instead of just an onocologist, it does help.  trish

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

Listen to Trisha, she is spot on!  Yes you do have cancer and yes you do have an oncologist, but you are still in control and over time you will have tons of decisions to make.  Stress is probably THE worst thing you can do over all.  Slow down, this is the time to take baby steps and to start taking better of yourself to get ready.  Surgery is so advanced now that for most of us it was easy.  Chemo was not the "boogyman" I thought it would be.  Stay off the 'net...read the treads here.  We have all been through what you will face.  Type in the search bar on these pages with the subject and follow the threads.  Yes,it's scary, but unless you get hit by a bus, you will not die today or in the near future!  Like Jan(jazzy1) says, Cancer is a WORD not a sentance!  Best, debrajo

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

The first thing my doc told me after my diagnosis, DO NOT RESEARCH ON THE INTERNET.  Not updated and can be doom and gloom!!!  

We've all been there, just hearing the words YOU HAVE CANCER, is scary!!!  But....as you'll learn quickly, all of us have been in your shoes and most of us are living quality lives.  Use us for support and ask questions to gain knowledge and strength.

God never wrote a book on how our lives would pan out, therefore, learn to roll with the punches and SMILE Smile

Best to you,

Jan

soromer
Posts: 130
Joined: Mar 2011

Dear Andrea,

I'm sorry that you have to deal with this frightening news, but I agree with the other commenters: you can do it. And your name is really a good one.

However, I am going to disagree a bit with the ladies who have already replied. No, I wouldn't put a LOT of confidence in the medical reference sites, even this one or the one sponsored by the National Comprehensive Cancer Centers, in terms of discussions of treatments or of survival rates. They are all aggregates, those statistics, and they can't account for each individual woman's condition.

BUT I would recommend you check into this site and others (Eyes on the Prize, in particular) to read what other women have to report about what they have tried and what seems to have worked (at least for them). 

The women on this discussion board, for example, have been great about sharing information related to nutrition along with the medical treatments they've gotten, and what the results have been. That's true for the EOTP women, too.

I wish I had found these sites BEFORE I had my surgery, in fact, so I could have gone into it better prepared about what to ask.

I strongly encourage EVERYONE who is likely to have chemotherapy post-surgery to investigate the "chemo sensitivity assay testing" with live tissue from your tumor. The sample can be taken during surgery, and then sent to a lab that specializes in testing the response of your tumor cells to different chemo agents. (It's analogous to doing a culture of bacteria to see which antibiotics kill it best.) There is some controversy about that process--some cancer centers do it routinely while others reject it. Since my own first-line chemotherapy was NOT effective, I do wish that I had known about it to have had it done.

I don't want to scare you with that last piece of information, so let me also tell you that I am in remission now and plan to stay that way. (We'll see.) 

As for alleviating anxiety, I used a number of different techniques. I relied on Ativan for the first couple of months. It helped. I then had a couple of Reiki sessions which were remarkably reassuring; I haven't felt panicky or fearful since. I also do a lot of deep breathing, meditation, yoga, and singing on a regular basis. Whatever helps get you to be centered and grounded can help reduce anxiety. Prayer is good for some people; I suppose at least some of what I do would count as prayer.

See if you can get someone to go with you to the consultation. Take a list of your questions, written out; your companion might be able to take notes as you have the conversation. You can certainly call to see about other tests planned for Tuesday if any. (I had a chest X-ray when I was diagnosed, to rule out lung mets. Yes, that was a scary episode.) While some decisions you and your doc make now are indeed irreversible, not all of them are. Oh, and do make sure this is someone you can work with. That's important. My gyn-onc is really not very touchy-feely, but my husband and I have made real human contact, partly by speaking up when things didn't go as I wanted them to, and partly by doing a very nice thing for them at each consult--bringing flowers for their meeting room. (Usually it's from my own garden.)

Good luck to you, dear Andrea. May you have good news at every step of the way.

 

 

 

 

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Welcome Andrea!

I was just diagnosed this past November and like many of the ladies here had many of the same feelings, reactions and questions. In my case I was mostly numb despite normally getting anxious about any bad health news.

It was weird!

I had the DaVinci surgery on 1/28/13 and it was relatively easy. I had trouble sleeping for a few nights due to not being able to get comfortable on my side, but that did not last long. My energy and appetite are not what they were, but I will give myself time...it has only been 9 days!

I agree with all the suggestions above....most of all be kind and patient with yourself. This is alot to swallow. I am thinking if your doctor made it sound fairly straight-forward that perhaps your cancer is early on. My gynecologist-oncologist told me at the first appointment that he expected surgery would be my only form of treatment based on the ultrasound and endometrial biopsy, but only the biopsy after surgery would tell for sure. I am awaiting those results although he reiterated the same thing after the surgery.

Sometimes I think these doctors know more than they let on and sometimes less...it depends.

My 1st appointment with the oncologist involved an internal so that was part of the time and the other was discussing his treatment recommendations and answering my questions. Sounds good to me you got a 2 hour booking!

Best of luck. these ladies have been a great source of strength and inspiration for me....sometimes just knowing someone has gone down this path before you helps alleviate alot of apprehension.

 

Kathy

runwithloki
Posts: 16
Joined: May 2012

Hi Soromer,

I just came across your post. Can you tell me more about the chemo sensitivity testing? I don't think that was done for my mom (who was diagnosed Stage IIIc last Jan) and her first rounds of chemo (carb/taxol) were unsuccessful. She did really well through the chemo - had minimal side effects - but even after completing the 6 rounds of chemo followed by 28 rounds of external radiation, her cancer has reappeared (on the appendix and liver). As she recovers from her recent surgery, I'm trying to research different treatment options that might come next.

What was your first (ineffective) line of chemo and what did you do as a follow-up treatment? Did they do the chemo sensitivity testing at some point?

Thanks,

Stacey

beila
Posts: 97
Joined: Sep 2012

Soromar

would you mind telling me which Chemo worked for you after the 1st line Taxol/Carbo didnt?

 

Beila

FightingSpirit
Posts: 28
Joined: Feb 2013

Thanks to all of you for your kind words and advice.  It is helpful to hear from others who have gone through this.  It has been a LOOOONG 4 days since diagnosis, but I have my feet back under me again, thanks to implementing many of your suggestions.  I am no longer feeling like a victim, but have decided to become an active participant in managing and healing my disease.

 

First step?  I started a survivors notebook.  The first 10 pages have been reserved for inspiration.  After that, I am writing questions for the gyn/onc, info I need to research and healthy diet/lifestyle changes which will help my healing going forward.

 

I am also devouring survivor stories, especially on EOTP.  This helps me learn about the treatments while focusing on survival.

 

Without your advice to slow down and BREATHE, I woul still be shellshocked.  Thanks again and best wishes on your journeys.

 

Andrea

 

PS - Got the path report - serous carcinoma.  Helps to know what I'm battling.

brenda14
Posts: 1
Joined: Feb 2013

I was just diagnosed with  early stage  endometrial cancer on 2/7. I waited three weeks for my followup from a d/c with hysteroscopy that I had on Jan.16th. I never got a call so, foolishly I thought things were Ok. When I was told Thursday it was early stage endometrial cancer I was totally shocked. I wasn't given much information and I was so shocked I never thought to ask many questions. I am being referred to an gyn/onc and am waiting for a call this week about setting up and appointment. She did say I would need to have a hysterectomy, which I already knew.  One minute I am Ok and the next I am an emotional wreck.  I think she was surprised at the outcome of the biopsy because she told me a few times she was sure it was just routine and it would be Ok. I am fortunate as I have supportive family and friends, but I live alone and I have too much time on my hands thinking about things. I just want to get the surgery over so, I know what I am dealing with.  What kind of questions do I need to ask the gyn/oncologist? Any help would be very appreciated.

 

Ces59's picture
Ces59
Posts: 8
Joined: Feb 2013

Hi there  I am emailing from the UK where things seem to be done a  little differently. I was diagnosed just before Christmas but then had an MRI which showed no spread (they said). So I was staged 1a and told I would need a hysterectomy which happened just  a week ago. The surgeon then told me that they had found other things they did not expect to see during my surgery. These included an inflamed bowel and some changes around the left ovary and Fallopian tube. This surgeon does not deal with complex cancers so he had to call in a gyn oncologist who recommended he take away the omentum. Lots of biopsies were taken and I was told I would get the results this week. He did warn me that it was possible some cells might be found in the pelvis. It seems likely that I will be restaged now and need further treatment. In the UK you are pretty much in their hands. It has happened quickly which I am grateful for but what do I need to do now so that I am in more control of my own life. I take heart that there is a fighting spirit here as I am really struggling to stay positive. Does my picture ring any bells with you survivors and can you offer any positive advice that might improve my mental state?

FightingSpirit
Posts: 28
Joined: Feb 2013

As a newly diagnosed UPSC future survivor, I am going through the same emotional roller coaster.  One day I'm fine, the next I can't get out of bed.  It has been 10 days since diagnosis and I have cried, laughed, gotten angry, been sad....the entire gamut of emotions.  When I fight it, I feel bad.  When I go with it, I feel refreshed and ready to fight again.  Being so new, the only advice I can give is to go with your emotions.  Don't bottle up anything.  

I, too, live alone.  The good thing is we can really let loose our emotions without scaring our loved ones :).  Yell, scream, cry to your heart's content.  Stay in contact with your support group and start thinking about what you can DO.  For me, action takes away fear.  

Also, find one person you can talk to about your feelings and concerns without worrying about the emotional impact on them.  For me, it is a friend who isn't close emotionally, but is willing to be supportive.  It isn't that he doesn't care, but he's not a person I feel I have to protect, like my parents, sisters and friends who are easily upset.

As for the first Gyn/Onc appointment...I had mine yesterday.  Prior to the appointment, my family and I began researching UPSC specifically and endometrial cancer in general. As you research, you will begin to have questions about the process, the disease and the treatment.  Write them down and ask during your consult.  Ask about testing options such as CT/PET scans vs MRI and X-ray vs CA-125.  Also ask about tissue assay testing.  In short, ask about ANYTHING that concerns or confuses you.  One of my biggest concerns was if the increased bleeding experienced since the biopsy indicated that the disease was spreading.  Once that question was answered, I immediately felt better.  If anything is interfering with your peace of mind, ASK ABOUT IT.  If you don't understand the answer, make the doctor break it down until you do.

Hope this was helpful.  Best of luck on your journey.

Fighting

pinky104
Posts: 46
Joined: Feb 2013

I was diagnosed with uterine cancer in March of 2010.  I was referred to a gynecologic surgeon/oncologist.  I remember sitting in the waiting room (for about an hour and a half) looking around the waiting room and wondering who else in the room was there for the first time.  Most people seemed calmer than I had expected, so that surprised me.  I didn't know at that point that we all have to come back for multiple follow-ups.  I had an internal exam, just like any other gynecologist appointment.  I'd already had a D&C for a polyp, and my diagnosis came from the biopsy after that surgery at another hospital. What my regular gynecologist hadn't told me was that I had uterine papillary serous carcinoma, a very bad kind (the kind that usually causes all the ovarian cancer deaths).  My surgeon really didn't go into survival rates, but hinted that I had a bad type.  I worked at another hospital in an office position, so I called a reference person at the cancer center in my hospital who researched survival rates for my type of cancer.  She had trouble finding anything on survival rates for my type, but finally found them on a website called oncolink.  The survival rate was 15%.  I was shocked.  My parents both lived long lives (in spite of breast cancer in my mother twice and prostate cancer in my father once), so I'd expected I most likely would live a long life. I felt I had to change my feelings about my life expectancy fast. After a month or so, I had resigned myself to dying.  My friends thought I shouldn't think that way, and they were all praying for me.  I thought that if I expected the worst, I would either get what I expected or be pleasantly surprised if I didn't. 

To make a long story short, I had my surgery 3 weeks later.  I was scheduled for robotic surgery, but the day of the surgery, my very busy surgeon had just looked at my CT scan report for the first time, and while I was in bed getting prepped for surgery, he told me my cancer had gone too far for robotic surgery.  I had been a wreck for 3 days before surgery anyway, and my heart was beating erratically.  I had to have a cardiologist check me out to okay my surgery, which prolonged the start of the surgery.  Also, I had been found to have gallstones on my CT scan report, so a gastroenterologist was called in to add removing my gallbladder (and appendix) as part of my surgery. 

I was in surgery for a long time, and I spent 6 days in the hospital. I had to have 2 units of blood transfused because I'd lost so much, and my veins had practically collapsed, so they had a hard time getting the blood into me.  The hospital stay was awful.  I had a roommate who kept the TV on all night, the air handling system sounded like a train driving around on the roof, and I had to get up, painfully, and go to the bathroom every 2 hours.  When I was discharged, they finally gave me meds for a possible UTI.  '

A week after getting out of the hospital, a panel of doctors had reviewed my pathology report and decided that my cancer, even though it was the type that causes ovarian cancer, had actually started in my uterus.  I had it in both ovaries (but not the tubes), the omentum, and the ilium.  I was told it was stage IV, even though all my lymph nodes were okay, because it had spread out of the pelvis.  Again, I assumed this was going to kill me.

A month after surgery, I had my first chemo appointment at a different hospital, the one where I worked, and I was really dreading it.  There was a girl working on the desk who had worked near  my office earlier in her hospital employment.  I told her I had stage IV, and she told me that there were actually lots of people coming to the cancer center for years who were stage IV.  That was my first ray of hope.

At stage IV, they don't usually do radiation because your cancer is too widespread for that, so I only had to face chemo.  I'd heard awful things about vomiting from it so I dreaded it terribly.  Well, now they give you meds to prevent nausea, and they work.  I was shown a film while lying down, and then they put an IV in me.  They started giving me a couple of meds to prevent an allergic reaction.  I believe one was a strong dose of Benadryl.  I actually felt like I was high on a couple of drinks.  Then the feeling wore off.  Then, they put me on Carboplatin and Taxol.  I think it took about 6 hours to get through it all.  Three weeks later, I had the same stuff again, minus the film to watch.  I saw the doctor before the chemo so he could monitor how I was doing and decide on how big of a dose I got.  I had chemo 6 times, all 3 weeks apart.  At one point, they wanted me to take another drug, Neulasta.  My  younger brother had just died of a heart attack a few days earlier and this drug had a risk of heart attacks, so I refused it.  I later heard that another girl in my department who had taken it for another reason had gotten small tumors from it.  I was glad I'd refused it.  About halfway through my chemo sessions, I was very short of breath. When I went shopping, I had to stop walking in stores to catch my breath.  It was caused by chemo-induced anemia, so I had to have a blood transfusion.  Before I finished my 6 chemo sessions, I had one more transfusion. 

I've been checked frequently by both my surgeon and oncologist.  At first, it was every 3 months by each guy, and now it's every 6 months.  I've had two CT scans of my abdomen, an MRI (because my shortness of breath continued months after surgery, they checked and found I had hemochromatosis, a genetic disorder of  iron storage) and multiple CA-125's, a blood test that checks you for cancer.  My level on that is down to 8, which is excellent. 

So, after all my worrying, and a deadly form of cancer at stage IV, I'm alive with no evidence of disease two years and 9 months after surgery.  Go figure.  You just never know!!!  I do keep getting check-ups because of being a worrier and because the doctors recommend it.  I think about my mother, who had breast cancer, and celebrated 5 years of being cancer-free.  Ten years later, she got cancer in another spot in the same breast.  Her mother also had breast cancer and survived it.  I swear that being stressed out causes cancer.  I was stressed at work when I got mine, and my mother was stressed out both times she had hers.  I think stress lowers your resistance.  Thank heavens that I became eligible for social security at just the time I would have had to go back to work.  I was able to pick that up and retire and get rid of that stress.  Although I still have plenty of work to do at home, I can sleep in most of the time, when I don't have doctor's appointments, and I feel much better.

I wish you luck with your treatment.  I thought you might like to hear from a survivor.

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Oh Pinky your journey just makes me want to cry for all you have gone through! Yet you possess such hope! I, too, believe that stress contributes to getting cancer. I have always had alot of stress in my life over the years from raising 3 daughters alone until I remarried, caring for my father with Alzheimer's for a number of years, my husband having ongoing medical problems & numerous surgeries that eventually resulted in his leg being amputated, raising our young granddaughter...the list goes on and overlapped on many occasions.

I am a worrier especially at night before I go to sleep and would drive myself crazy trying to find solutions.

I now think of my diagnosis as a blessing b/c it has really taught me to appreciate my life, focus on the positive and to cut off the scary thoughts when they appear and let God take over. I often think of the last 3 months in relation to that 'Footprints' saying that God carried me through b/c I could not have walked on my own.

I wish both of you the best with your situations.

Kathy

pinky104
Posts: 46
Joined: Feb 2013

Thank you for your good luck wish.  I have the same wish for you.  You have a long road to travel.  It's good that you keep so connected on this site.  I just started getting on here and there is so much positive feedback, it's great.  I actually got on here once when I was first diagnosed.  My husband saved the site on our favorites list, and I came across it again while looking for something else on the list.  At that time, I remember a woman who had just been diagnosed was looking for anyone who had survived the kind of cancer I have to know if it's worth going thru the treatments.  I suspect it was the woman who was posting frequently but died in Nov. 2011 (can't recall her name right now).  I was actually thinking about telling her I'd survived it all.  It's sad to know she didn't.

I used to worry about my job all the time and that kept me from getting to sleep. Now, I don't have the job to worry about.  I took up reading romance novels several years ago, and now I just read until I feel I'm going to fall asleep reading.  The books channel my thinking into another place and time and get my mind off everything else.

I actually had another cancer scare years ago when I was much younger.  I'd found a lump in my breast.  Well, it wasn't exactly a lump, it was kind of a whole section that had enlarged.  I went to my family doctor and he referred me to a surgeon.  I remember going to the grocery store later that day.  When the clerk told me to have a good day, I was on the verge of tears.  I thought, if you only knew what happened to me today, you wouldn't be saying that.  I wished that simple everyday statement could mean what it normally means.  After a couple of weeks waiting to get to see the surgeon, when I finally got in, he laughed it off.  He told me to have a mammogram to be sure, but he thought it was nothing.  I couldn't believe I'd done all that worrying over nothing.  I did see life a bit differently after that.  Now, I feel like I don't think that way so much.  I kind of just roll with the punches. 

My husband and I bought our funeral plots last year, and my husband's brother and sister had already bought theirs.  When we told his sister that we got ours, she said, we all have our plots now, and now it's our job to stay out of them!  I'm going back to thinking about dying when I'm really old (I'm 64 now).

Ces59's picture
Ces59
Posts: 8
Joined: Feb 2013

What an amazing story. You are a wonderful person with such history that so many people on here need to know about. You have managed to go through so much and come through it. I agree about stress and have this theory that people seem to get cancers about 2 years after some major stress in their lives. Seems to have happened to so many I know. keep your story coming - it is strength to us all.

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