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Newly Diagnosed

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

Hello Group!

I am looking forward to gaining lots of information from everyone on this disease as well as how to handle everything associated with the diagnosis/treatment/recovery proccess. I DO plan to recover!

A little background...I am a 55 yr old married female (obviously...lol). I have had UTI's my entire life and foolishly thought that some of the spotting I have had over the past year was from the UTI! Then I had a full blown period for the first time in 5 yrs this past August as well as a discharge that began to get progressively heavier. However, it took me 3 months to get up the courage to go in for an endometrial biopsy. I put if off b/c I have always had an all-consuming fear of PAP smears or anything to do with 'down there' due to sexual abuse as a child. Also, I had experienced very heavy perimenopausal bleeding 10 yrs ago and they biopsied me then a few times so I knew it would not be a pleasant experience.

I seem to be having a different (or little reaction) to my diagnosis. I don't know if I am in denial or if I just expected this diagnosis after the symptoms began to appear and knowing I fit the profile. My GYN called me at work and gave me the results over the phone that my endometrial lining cells indicated cancer was present and I needed to have a transvaginal ultrasound done before seeing a gyno-oncologist. I felt a strange calm come over me after this phone call that everything would be okay, and this was weird given I am suseptible to anxiety attacks!

Both the gyno and the gyno oncologist told me I would need a radical hysterectomy which I will have on 1/7/13.

I have cried a few times since the diagnosis especially when having to tell my disabled husband and 3 adult duaghters who were all very upset. But overall I just feel so calm! I don't get it.

 

Anyhow, I was also told it appears to be grade 1 and stage 1, but the stage cannot be determined until after the uterus, ovaries, lymph nodes, etc. are removed at surgery. It seems many of you were able to get more definite information about this from your endometrial biopsies or if you had a D&C diagnosis...am I not asking enough questions or are my docs not volunteering enough info?

The only real concern I have is the surgery itself...I am 100 pounds overweight, am 55, and sedentary so I worry about making it through given I amnot very active or in great 'fighting' shape. I only have high blood pressure and obesity and have not had any surgeries since my tonsils and a knee surgery as a kid. Can anyone tell me how long the DaVinci hysterectomy takes? (I forgot to ask!)

 

Any other feedback or advice would be appreciated.

Thanks to all for any help. I do not have any close friends...my husband is my best friend and my daughters are my support system to a point so I think this board will be my main source of getting through this.

KG

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

Hi Kathy, Welcome to this site.  It is a great site to find before you really begin the journey.  I found it after wards.  This is doable.  I was 55, overweight with high blood pressure and high cholesterol and I had the total abdominal surgery.  Yes I have a big scar down my stomach but I am still here.  I had not had a period for years and one day the flood gates opened.  I was at the gyn dr office within 4 days of the onset of this.  I did have to wait two weeks to have a D&C then another week for the results and yes I got the call on the phone Friday, 1 April 2011 that there were cancer cells.  The gyn dr set up the appointment for Monday, 4 April with a gyn onc dr at the same University Hospital Cancer center. My family is my sister, my daughter and a host of fast friends.  The gyn onc dr could not give me firm information till after the surgery.  I had surgery 8 April.  I was in the hospital 5 days.  I went home and then went back in two weeks for the pathology report and cancer treatment options discussion with the dr.  It was decided to go with carbo/taxol and no radiation. I was DX with stage 3C1 MMMT (carcinoma sarcoma) I had a stage 1A tumor in my uterus with 0.3 cm invasion of the myometrium and 1 pelvic lymph node had 1 microscopic cells so I was classified as Stage 3C1.  I was given 6 treatments of carblo/taxol every 21 days.  Hair fell out but for me that was not a problem, it is just hair.  I did lose 30 lbs. but have since gained 15 back over the last 16 months.  I do have a surgical hernia that I have not taken care of yet but will do that next year after my daughter gets married at the end of January.  The biggest thing is to have a positive attitude or at least it was for me.  There are a lot of women that can have given their stories on this site to provide a lot of different treatments and how they dealt with it and they all give moral support to each other.  I will add you to my prayer list.  trish

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

Welcome,  I too am a recent diagnosis.  What I hear from what you are saying is stage 1 grade 1.  That sounds great.  From my D&C they knew it was grade 3, not the stage at all.  They were pretty accurate as it stayed grade 3.  I didn't know the stage until surgery, luckily that was as it appears to be stage 1A,  sort of helps with the MMMT grade, not so good

i had the DeVinci surgery on 12/12.  Mine took about 5 hours due to the number of lymph nodes they took to make sure they were all clear.  The surgery was great, i finished on Wed at 5:30pm,  in my room by 9pm and home on Wed, discharged by 3:30.  having this type of surgery is great as the recovery is a bit better.

I am now working through the treatment options. I will pray yours stays grade 1 as that is good and close to stage 1.  My gyno oncologist told me with Stage 1A if it was grade 1 i would have been done with surgery. 

This site is great as the ladies are so helpful and keep you positive.

my thoughts are with you

Sharon

Ro10's picture
Ro10
Posts: 1397
Joined: Jan 2009

Sorry you have to join this site, but welcome.  I too had the DaVinci surgery in 1/09.  My surgery was 6 hours long.  I had 25 lymph nodes removed.  I had no symptoms before surgery, only an abnormal PAP.  So it was felt before surgery that thhysterectomy  would take care of the problem.  So it was a shock to get the diagnosis of UPSC Stage 3-C.  I was not expecting that at all.   I never even heard of UPSC.  

I weren't home the day after surgery.  There was minimal pain and the recovery period was very easy.  I started chemo 3 weeks after surgery.  

I hope you surgery goes well and you are a low stage And  grade.   Feel free to ask any questions you may have and to express any fears you may have.  In peace and caring.

SettledSue
Posts: 18
Joined: May 2012

Kathy, I know what you mean about the strange, calm feeling after diagnosis because that is how I felt, too. Intellectually I knew I was in denial but that didn't stop me from being in denial. Now, 9 months later reality has sunk in a little more. If you have concerns about the surgery the hystersisters web site is a good place to go. They have all sorts of helpful hints.

Sue

 

 

 

SettledSue
Posts: 18
Joined: May 2012

Kathy, I know what you mean about the strange, calm feeling after diagnosis because that is how I felt, too. Intellectually I knew I was in denial but that didn't stop me from being in denial. Now, 9 months later reality has sunk in a little more. If you have concerns about the surgery the hystersisters web site is a good place to go. They have all sorts of helpful hints.

Sue

 

 

 

Sisters three's picture
Sisters three
Posts: 151
Joined: Nov 2012

I'm fairly newly diagnosed and have surgery scheduled for the 7th also. 7 was always my lucky number so hopefully all will go well for us.

I will close quickly, since I'm  taking care of a husband fresh from surgery and a 25 year old son who just showed up with a horrible case of the flu!!!!!!!

I hope everyone sleeps well tonight, my alarm is set for every 4 hours!!!!!

You gotta laugh!

Lisa

Double Whammy's picture
Double Whammy
Posts: 2276
Joined: Jun 2010

Your emotions sound like mine were.  Taking care of business, assuming all would turn out fine, and frightened of the surgery, not the cancer.  My pathology did turn out fine - Stage 1a, Grade 1 endometroid adenocarcinoma - the "garden variety" type.  I had DaVinci surgery - it was around 5 hours.  I spent the night in the hospital, went home on no pain meds the next day.  I also took very good care of myself when I got home.  I needed no adjuvunct treatments and remain NED 2 1/2 years later.  My checkups have been reduced to 6 months now.   I hope your outcome is as good as mine.  I think the statistics are something like 75% of all endometrial cancers are the type I had, and it's quite common that it is caught in the early stages because it presents symptoms early.  Grade 1 is a good thing - the cells they found are pretty lazy.   I don't think I even "got" the impact of the "what ifs" until after my surgery. Just as well I'd say. 

Best wishes to you,

Suzanne

NorahS
Posts: 93
Joined: Dec 2012

I'm pretty new here myself, but I just had to post on your intro thread especially when you said that you seem to be "having a different (or little reaction) to my diagnosis. I don't know if I am in denial or if I just expected this diagnosis after the symptoms began to appear and knowing I fit the profile..."  

I initially had much the same reaction as you and I haven't strayed much from that initial reaction to my diagnosis (although I have emotionally gone up and down a bit).  But most of the time, I feel that I will be able to achieve my first small goal - getting to NED (No Evidence of Disease) for the first time by spring 2013. And I have Stage 3c UPSC cancer!

Don't worry too much about the hysterectomy - especially if you are having a Da Vinci. HysterSisters (which has already been suggested to you) has some very practical advice for getting through the first few days after your operation and working your way back to what is normal for you.  Of course, after the first hurdle has been overcome, we'd love to see you back here and hear how you are progressing.

Welcome!

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

I wanted to thank all the ladies who responded to my first post...it was truly wonderful to hear such warm wishes and offers of prayers...Laughing I really appreciate all the information about the length of the surgery (geez...5-6 hours???) and the estimated recovery time from surgery. I am assuming that with us all being women and therefore caretakers we have that in common as well as this disease, and I am concerned about so many things my illness will impact.

I read Lisa's posts and it always amazes me how connected we are as humans. My husband is an amputee as a result of MRSA he contracted while having an ankle surgery and has been wheelchair-bound for the past 2 years. Additionally, we have custody of our 11 year old granddaughter. I work managing a homeless shelter and that can be pretty physically demanding despite being tied to the computer for long stretches. I worry about my husband, granddaughter and job while I am physically incapable of helping them out. I have no idea how one copes with a spouse having open-heart surgery while preparing for thier own serious illness/surgery...

I am pretty busy with all the above so I have not gotton to the hystersisters site yet, but plan to this weekend. Thanks for that info as well! Since this is my last weekend before the weekend I have to prep for the surgery on the 7th my husband and I drove to eastern West Virginia to spend tonight alone in the mountains. One of the things I am learning from this diagnosis is that I really need to get my priorities in order as I am too much of a people pleaser and have a hard time saying 'no.'

Thank you everyone...Smile

 

treeskyland
Posts: 1
Joined: Dec 2012

I had the DaVinci and it was nothing! I experienced almost no pain, took some tylenol a few times but overall was amazed at the recovery. I have five 1/4-1/2 inch scars which I can barely see!

Now for the cancer: I have two types, adenocarcinoma of the fallopian tubes and carcinosarcoma of the uterus. Everything was taken out which was fine with me. [I was 56 at the time]. I had the carbo/taxol and brachetherapy treatments and went from a CA125 of 80 to 9! The carcinosarcoma is an aggressive one. I was stage/grade as 2 for the uterine and as 1 for the fallopian tube(adenocarcinoma). I didn't get sick until the chemo!

Hopefully you will be like one of the other authors who needed ONLY surgery! I was very business-oriented and do not believe that such a response is necessarily denial. 

 

As a researcher myself, I came across a book by Shelley Taylor on Positive Illusions. Research shows that those who refuse to engage in catastrophic thinking lived much longer that those who took the so-called "realistic look" (e.g., facts/stats about which stage lives how long, etc. In contrast, the person in denial does not engage in proactive behavior but simply say "I don't have cancer" The Positive Illusionist engages in proactive behavior, seeking and actively participating in treatment. I should put this on my profile page!

Sisters three's picture
Sisters three
Posts: 151
Joined: Nov 2012

I'm so glad to read you got away with Hubby to the Mtns. I was sorry to read about the MRSA that attacked him. That disease is so incredibly sneaky and nasty. I hope he is now totally rid of it.

You are correct, by reaching out and making contact with others on this site you can see a lot of the same situations in our lives.

I hope the two of you have a wonderful cup of coffee in the MTNS this am and enjoy the fresh air and beauty! Happy New Year!

plantlady2012
Posts: 49
Joined: Dec 2012

Hi Kathy!  I was also 55 when I was diagnosed, and I weighed 355 pounds at the time!  I was very sedentary, and quite physically debilitated.  The surgery went just fine (I also had the davinci kind).  Within 48 hours, I was doing very short chores like my laundry and washing dishes, but slowly, with minimal bending!  And It was just for me, so very little needed to be done.  I was able to walk up the stairs at my house as soon as I got home from the hospital and was driving within a week.  (well, I had trouble with stairs BEFORE surgery!  The point is, I COULD still get up them!). 

Since then, I have radically changed my diet and lifestyle!  I have lost a total of 171 pounds, so far, and feel MUCH better!  I attribute it to following the dietary guidelines set forth in a book called "Anti-Cancer:  A New Way of Life", by David Servan-Schreiber.  He talks about foods that help combat cancer, and I stopped eating all sugar, junk food, processed foods, etc.  I now drink green tea all day instead of coke!

Like you, I had some delay in getting diagnosed because of two similar issues:  1.  I always had a lot of trouble going for gyn exams, because of being raped when I was a teenager.  2.  I had a hormonal imbalance most of my adult life, which caused abnormal bleeding, so for me, it didn't seem to be that big of a deal.  Same old same old!  Don't beat yourself up over it.  We did the best we could, under the circumstances.

May your surgery be a breeze!

 

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

Thank you Plantlady2012 for sharing the above information. I have gained about 20 pounds and have been feeling progressively out of control. My weight had been stable around for several years, and then I started gaining again the past couple years pound by pound. I am close to 300 and a major sweet tea addict. Sugar is my problem, and I know it feeds cancer. Walking up stairs is a real problem for me...my heart about beats out of my chest. Add to this I am claustrophobic and avoid elevators and I have some real issues!

I am going to get the book you mention although I have had zero success with ever losing weight. Many women seem to be able to lose 10, 20 - 50 pounds, but I have never been one of them. I can't stay on a diet. But I know my obesity is a major contributing factor to my cancer. I hope I can get some good info from reading the book, and maybe even 1/10th of the success you have had...that is truly phenominal especially at our age. Congratulations!

It never ceases to amze me how much we can have in common...I always felt like I was one of the few who had such issues with being seen by a gynecologist. I know most women don't enjoy it, but I would have to take a zanax and do some self-pep talks for weeks before an appointment to get through it. Figures this fear would lead to a diagnosis 'down there' which will now really force me to face my fear.

I am about as ready to go in Monday as I will ever be. If you are inclined towards prayer keep me in mind. Thank you!

Kathy

plantlady2012
Posts: 49
Joined: Dec 2012

LOL, Kathy, I had to take xanax for visits to the gynecologist, too!  And that was for my whole adult life, since the rape occurred when I was a teenager.  As soon as there were doctors available who were women, I went to them, instead, but it didn't help much.  I could hardly sit still on an examination table for them.  They had a moving target, lol!

I will post about weight loss, if you want me to.  Obviously, I was never previously successful at weight loss, either!  You CAN do it, really!  The food addictions are fed by sugar, too!  Once you summon up the courage to break THAT, you will be half way there!

Don't blame yourself for getting cancer because you have a weight problem.  Lots of slender women get endometrial cancer, too, and so do very young women.  My mother was the same size as me, and SHE never got cancer!  Who knows why some people get it and some don't.  It doesn't matter.  All that matters is taking the best care of yourself that you can, and getting well again!

Let us know how chemo went for you! 

 

--Lynn

 

plantlady2012
Posts: 49
Joined: Dec 2012

The claustrophobia you have might very well be related to the childhood sexual abuse.  I developed all kinds of anxiety issues after the rape, and eventually a full-blown anxiety disorder that required medication for much of my adult life.  I had some irrational fears to deal with, too.  I am happy to report that I am off of all anxiety meds since a year ago!  Still have the probs, but they are under control, now.

I lived in a house with stairs when I got diagnosed with cancer.  I was so heavy and debilitated that I pretty much had to drag myself up the stairs, leaning heavily on both arms on the rails, and I avoided them as much as possible.  I spent most of my day on the couch.  Just grocery shopping was a big effort to me.  The surgery resulted in bleeding hemmorhoids, which kept me in bed a lot for the next five or six months.  I lost the first 100 pounds while basically bedridden!  But, today, I went to the gym I just joined, and I skip right up the stairs.  You can't believe how much transformation is possible for you!  Even now, at your age, at your weight, and fighting cancer!  Frankly, I feel MUCH better today, after a whole year of chemotherapy that ended in October, than I have felt in MANY years!  It took getting cancer to finally make me mad enough to fight for the life I should have had!  You still have a future waiting out there for you, too!  Go get it! 

plantlady2012
Posts: 49
Joined: Dec 2012

You bet I'm inclined towards prayers!  I will add you to mine!

 

Oh, and the hemmorhoids weren't caused by surgery, they were caused by me letting myself get severely constipated AFTER surgery.  It isn't a surgery risk, so don't worry about it!

 

--Lynn

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

Hi Lynn!

I read thru your posts above yesterday and found them to be so encouraging! I appreciate that especially at this time where I feel like I am somewhat in a restricted position without many choices...knowing this diagnosis will change my life in one way or the other!  I try to be upbeat and laugh, but I am afraid of what tomorrow will bring. I developed a cold Friday and I am now debating on calling the surgeon to see if it is okay to go ahead with the surgery or just going in and letting them evaluate me face to face....

Funny but despite the sexual abuse I always preferred a male gyno. I went to a couple females who were pretty rough, and for some reason they always use a larger spectula than necessary at first. Even the assistant of my gyn-onc who is female used a too large one last month and  spotted for a week afterwards.

I know logically that my weight, diet, etc. may not be the reasons I got cancer, but I have told myself for years I needed to get the weight off or I was at very high risk for this. I had such heavy peri-menopausal bleeding and a thick uterine lining 10 years ago that my gyno warned me I was at risk if I didn't lose weight back then. And here I am...

I do believe the claustrophobia is related to sexual abuse. My cousin was the culprit and would hide me when any adults came around. I used to have bad panic attacks in my 20's, but I went into therapy and learned how to control them. However, I have never been able to master some of my problems related to claustrophobia like getting into an elevator or closed stairwell. I have not been in an elevator since 1995! I don't like taking any type meds and only used the zanax for the gyno. Even then I had to walk the stairs to hs 3rd floor office!

Anyhow, thanks so much for taking all that time to respond to me and thank you for the prayers. I will definitely keep you posted.

Kathy

ConnieSW's picture
ConnieSW
Posts: 570
Joined: Jun 2012

I hope yours goes as well as mine did, Kathy.  My thoughts will be with you tomorrow and will be waiting to hear from you.

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

Kathy

I just had my surgery on12/12/12.  I hope yours goes as well as mine.  I will be thinking of you tomorrow.  Rest,  smile and enjoy being pampered.  You deserve it

Sharon

 

sdblackbu
Posts: 1
Joined: Oct 2012

Hi

I am post robotic surgery Oct 10, 2012 with first chemo Oct 18, 2012.  I thought I had a UTI which I did but that morning had noted a little pink on toliet paper.  My primary MD was out and new partner thought I should have a pelvic due to pink on toliet paper.  I had my yearly pap and pelvic in Feb 12 and everything good.  My primary MD thought my cervix looked strange and referred me to a local GYN.  Local GYN thought cervix looked ok possible endometrios but suggested a biposy (this all started on Sept 18, 2012).  I had bx on Sept 24th and MD thought all was well.  On Sept 25th I received phone call from my MD who told me he was shocked but bx was positive and I need to see surgical oncologist as soon as possible.  All I remember was rare and aggressive.

You may be in my state of mine, rare and aggressive means do what ever it takes to get this controlled.  I think the first month of my life was in total fight mode to survive.  I was staged as a III C.  I have finished my first three Taxol and Cistplantin and my CT scan came back good.  Have just finished my fourth chemo with two more to go.  Still uncertain as to whether radiation therapy will take place.  CTs are markers for me.  I know this is a journey that will continue for sometime but I am a survivor and you will be too.

I had DaVinic robotic and it is amazying surgery.  Went home within 24 hours, felt great, keep telling everyone how wonderful I felt (my gallbladder surgery was worse than this).  Surgery lasted six plus hours due to lymph nodes involvement.  My biggest problem post surgery was my left leg, after surgery I felt my left leg was weaker than right and it proved to be correct.  I have had nerve involvement which will improve but due to length of surgery, nerve was over stimulated so pain started similar to sciatica, started on Neurotin which has helped, have to be careful walking due to weakness but has gotten better daily.

I was not the healthy person at 64 when I had the surgery but I have really worked at improving that part of my life.  I try to walk 30 minutes a day and working on eating better.  Get in touch with a healing arts program with your hospital if they do not have one give your location and I will try to connect you with sometime in your area.  I am blessed with a very spiritual family and community but also massage, healing touch, tai chi, mediation, etc community which has helped me.

Stage I is good, so stay at peace and survivor mode which I believe is critical for good outcomes.

Blessing and fight hard.

SDB

 

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

Ladies,

 

Thank you all for the continued encouraging thoughts, prayers and shared experiences. I am getting ready to wind down for the night as we need to leave at 5am to get to the hospital by 6am. Surgery at 8am. I plan on beng back on the board before the end of the week reporting on my progress and sharing my experience with newcomers who have questions and concerns.

 

God bless!

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Hello,

 

How are you feeling?

Did you get the biopsy results yet?

Please keep us posted. :)

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