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Is it just me?

BSP
Posts: 4
Joined: Mar 2013

Hi there,

I wanted to reach out to see if anyone else is feeling this way or is it just me.

I was diagnosed with stage 1 uterine cancer end of January 2013. I was not toally shocked as I had a feeling by D&C came back not so great as they told me it would take 10 days for results and I got called in 2 days later. 

Well like the rest of you I am sure your Gyno said well if you are going to get Cancer this is the best one to get While that is reassuring .. its still "Cancer" 

So the same day I went to meet with a Gyn/Onc and basically he confirmed for this staget I would need a hysterectomy/bso. I just wanted to get the cancer out. 

He asked about kids if I wanted any and truth be told it was my only wish in life to have a child, but here I am 39 almost 40 and I realize not in the cards, and he also confirmed that when you have cancer, there is a small chance you could carry this onto your child so there is no way I would want that .. so we agreed best to proceed.

Anyways I had the procedure via DaVinci onm 2/14 and got results back it was stage 1A.

I am so thankful it was caught early, but it was still cancer. 

My husband keeps acting like its not a big deal and they got rid of it.

Am I wrong to think that my life from diagnosis day forward will never be the same. Yes for now cancer free which is fantastic but the emotions, menopause, at each appt nervous something will come back positive, I dont want to live in fear.

I took 6 weeks off work and while I am starting to feel better with tiredness and the sweats starting, I can't stop but think this is the most alone I have felt in my life. With my husband and some family members but no friends its sad and hard at the same time.

I break down at the thought the family I so longed for I will not be able to produce myself and I feel selfish for getting sad, as stage 1 is nothing compared to other prognosies others get.

 

I just need someone to say what I have / had is Cancer ... and am I wrong in my thoughts?

 

Any input would be HUGELY appreciated.

 

Best

 

 

janh_in_ontario
Posts: 110
Joined: Sep 2010

You have friends here! While we may never meet in person we have all been where you are. I also was stage 1, grade 2 and you are right - life is never the same. I constantly think that cancer will recur - the best we can do is pray it does not. There are many women on here with much greater health issues but I have never seen anyone discount another's fears. Come here often - you will learn lots and we need each other.

 

 

 

 

BSP
Posts: 4
Joined: Mar 2013

Its still cancer correct?

That is the hardest part to explain to my husband. I am so afraid of the menopause and what will become of me .. 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

All your feelings are valid.  Everything has changed and you have every right to grieve.  I wish I could give you a comforting hug.  Please, please keep coming to this site.   It's a safe place where you can say or ask anything.   I promise it will help.  No one understands like we do.

BSP
Posts: 4
Joined: Mar 2013

Thanks so much all of you.

 

I went back for my 1 month follow up and he did internal exam and told me all was fine and to come back in a month. When I told him what I was still feeling such as odd pains in belly all the way down to crotch every so often, and odd pain off and on (not frequent) on my left side he did not seem concerned. When I told him of the terrible cramping I get in my tush before I have to make a bowel movement he and the nurse just looked at each other. It was weird. 

I am having hot flashes and very emotional (sadness) and he recommended Premarin. I told him I am not sure about that as my eldest sister had breast cancer and not sure how I feel about taking Estrogen. I asked was this estrogen related, then said its an estrogen based disease so wouldnt that not be good. He said since I was stage 1 with minimal disease under 5 yrs of usage would be ok. I said I am still nervous about breast cancer and if he is my doctor i have to trust him. I left not feeling right so been online asking and looking since Friday.

 

I reached out to an alternate Oncologist I know from work and he was soooooo informative so gonna meet with him.

 

Very scary who we can trust. 

 

Also I met with a  center that offers counseling and dietary so gonna meet that to.

 

 

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

Hi!

I was also a  stage 1/grade 1 and had my hysterectomy on 1/28/13. I already was in menopause and had my kids so I did not have to suffer thru that part of the decision-making process and sense of loss you did. I would have made the same choice you did, though, as I would not want to live with anymore 'what-if's then we already have to once being diagnosed.

I hear what you are saying about the attitude you are dealing with from your husband. My was very supportive so I have to wonder if this is just your husband's way of dealing with something so scary? Brush it under the rug? Pretend it is gone? Because I think the feelings you are experiencing are true for most of u and our close family memberss...will it come back, will it be worse this time, will I lose my job, my hair, my house, my way of life? When I go to bed at night I have to turn off these thoughts when they appear and focus on being thankful and positive. Many of the women on this board who have had many recurrences or more serious diagnoses talk about staying in the moment, and I try to do that.

Although my husband & kids were very supportive and open to discussing my feelings and theirs I have found that co-workers and extended family don't seem to want to acknowledge I had cancer. Kinda weird, but understandable as it does still strike fear in most people.

Good luck though and keep coming back for support!

Kathy

txtrisha55's picture
txtrisha55
Posts: 430
Joined: Apr 2011

I think most of the women on this site and on the Ovarian site can state they have been there with those same feelings and some may still have them.  I know that I was not expecting a cancer DX when it came back in 2011. I looked it up on the Internet, saw the results of the cancer I had, MMM which has a 50/50 chance of living 5 years but usually last less.  I stated crying.  Then I kinda kicked myself in the butt,said get control, you do not know enought yet, this is old information and it is not you.  I am almost two years out from surgery and treatment.  So far so good.  I feel a lot of the stuff I was feeling is the unknown and I still have moments of whtat if it comes back and waiting for the other shoe to drop but then I start living my life and not worrying about it.  I tell my family and friends all the time, we all have to die sometime, they hate that but it is the truth.  I have also told them that I will fight till I have no breath left. 

I am sorry that you personally will not be able to have your own children. Had you not caught it, your life, could have been worst.  You are not selfish for wanting kids and have every right to be sad about that opportunity has been removed.  But do not focus on that as it will just keep you down. 

I do know that it is hard to do but I think trying to find a positive attitude about a situation can help.  Just think you will never have to worry about wearing white again for fear of starting your period. When I went back to work, I was wearing white pants and another lady said how can you wear white pants aren't you afraid.  I said no, have a hystoretomy and then you do not have to worry about it any more. 

This site is and has been a blessing as all the ladies are here to help by listening, to your fears.  Come here and vent, cry, let your fears be know, your joys, your good news and even the bad.  We are all here to help support and share.  Praying for you. trish

 

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

You are fortunate that it was caught at an early stage and low grade.  This is a very very good thing.  And it's a good thing that women can live without a uterus so this cancer has a great chance of being removed in total.  I, too had Stage 1a, Grade 1 endometrial cancer and am forever thankful it was diagnosed and surgery was performed when it was.  As you're aware, it is very unlikely that this cancer will recur.  But it could and that is why our highly educated, trained, and experienced physicians continue to follow us after surgery.  Anyone who thinks these folks don't have anything better to do than follow-up exams on us, should think again.  I bet every single one of our gyn oncologists, over the course of his/her career will experience that rare woman with a recurrence of a cancer that "they thought they got it all". 

I'm so sorry for your loss of ability to have a child and the sadness this brings to you along with the discomfort of instant menopause.  But you did have "real" cancer and because it was confined to your uterus, surgery probably did get it all and you will go on to live a full life.  Had you not had surgery, it would have continued to grow and eventually travel to distant organs and do all the awful things that cancer likes to do. 

It has been 2 years and 8 months since my surgery and the more time that passes, the less often I think about this cancer.  I honestly do not worry about it any more and I won't unless I have symptoms and I'm not looking for any.   I will continue to follow my doctor's advice and have regular follow ups (now only every 6 months) because I believe their  protocol is there for a reason.  I hope you reach this state of being more relaxed about the diagnosis soon.  It took me until my 2-year check, but I got there.  Try not to let those who don't understand your fears get to you.  Come here.  We understand. 

Suzanne

HellieC's picture
HellieC
Posts: 458
Joined: Nov 2010

Yes, you've had cancer.  It is a life changing diagnosis.  But it was caught early and is therefore unlikely to come back.  But it could (mine did) and so it is right to be vigilant and not just to brush it aside as a "passing" thing.  As Suzanne says - our wonderful doctors follow us up for a reason.  They don't just do it for something to pass the time! 

You have been through so much and have the added pain of not being able to have a family.  This is a huge life changing event which will take some time to learn to accommodate.  You need time to recover and time to grieve for what will not be.  Your fears and sadness are real.  We all understand them, so we're here for you whenever you need us.

Helen

2_timesurvivor
Posts: 1
Joined: Mar 2013

Helen

 

I am new to this site.  I was reading the comments and came accross yours.  Like you my cancer reocurred within 2 years of diagnosis.  The firs time I was diagnosed I had a complete hysterectomy followed by 3 month exams.  It was during an exam that they saw a spot on my vaginal apex.  The doctor did a tissue biopsy and called my two days later.  It was cancer.  I went thru the usual tests and doctor visits.  Final diagnosis was spot on my vaginal apex and spot on lymph node.  I had 40 radiation treatments 35 external and 5 internal.  It was after my last internal that I got sick--vomiting and diarrhea.  Long story short I finished my last treatment July 2013 and in Oct 203 started experiencing loose bowels and'gurling' tummy.  I take immodium only when necessary and also take probiotic culturelle.  My question to you is do you have any aftereffects of radiation therapy and how do you manage it.  I feel so alone--I am hoping you can help.  Thank you so much and God Bless

paris11
Posts: 132
Joined: Oct 2010

I think that we all worry about the "what if".

 

I am so very sorry for the great loss of your dream of having children.

 

I was dx stage 1C grade 2 in 2007.  I was not offered chemo and the cancer recurred with mets to liver and abdomen within 8 months. 

 

I seriously urge you to get second opinion re: treatment.

 

Best, Connie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm sorry about your diagnosis. I can relate to many things you said - especially about feeling ALONE. Cancer sure is scary & no one knows unless they've heard the words, "you have cancer".

My husband is prostate cancer survivor so he knows & is supportive. Your husband doesn't get it & many people just don't know how to deal with these type of things.

I agree with what has already been said about finding support here & in you local community. I plan to go to women's support group next week-my first in 4.5 years! I encourage you to be mindful of any changes in your body & report to your doctor but please try NOT to live in fear. This will not help you at all. Make the most of every day.

Lots of hugs, Mary Ann

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

So, so good to see your posting again!!  I've really missed you and happy you're doing better and gaining strength.  

Great to read you're going to a women's support group as I feel my group which I was in for 3 years gave me strength to endure.  As well, learned from others and realized I'm not the only one fighting this crazy cancer battle.  I attended my group sessions once per week for 2 hrs. at a place called, CANCER SUPPORT COMMUNITY...as know they're in many locals around the US.  These gals are still close to me and if I have a "cancer panic" I contact them and feel so much better.  

Hugs,

Jan

 

dld
Posts: 2
Joined: Mar 2013

Hello there -- I am so sorry to hear about your situation... I am awaiting surgery to determine the stage of my uterine cancer, but I just wanted to share some of my thoughts regarding children.  I am in my 50's and have two children in their 20's; however, this diagnosis has made me wish that I never had children -- although I love them more than anything!  I worry so much that I will leave them sooner than I should, and I know that they will be devastated.  Of course, my husband feels that he will be devastated, but he is better equipped to deal with that than they are.  You made the right decision.  I wish you well with your recovery.  This situation is new to me (just diagnosed this week), but I will be back to seek support and try to help others.  It is so hard to deal with this -- family, co-workers, etc.  I know what you mean.  

All the best to you

NorahS
Posts: 93
Joined: Dec 2012

...one of the most devastating things about cancer is trying to protect the ones you love. I am not afraid of the future for myself, only for my loved ones.

On the other hand, this is a good reason to start in on some of the different therapies out there. While it's recommended that you consult with your doctor/oncologist before starting or continuing any supplements, vitamins etc. while being treated, there are very few dietary restrictions.  

So, if you don't have the book "Anticancer: A New Way of Life" by David Servan-Schreiber, I suggest that you get it and start incorporating as many of the dietary changes recommended in it that you can.  

dld
Posts: 2
Joined: Mar 2013

Hello NorahS,

 

Yes, I will plan to get that book... It's been tough determining the right foods to eat... I don't want beef; I now am drinking my coffee black - no half and half or spenda... I just wish I always had this mindset.  

nancy9
Posts: 35
Joined: Feb 2013

I sooo get what your saying.  I was basically told on my 40th birthday that I had stage 1, grade 1 uterine cancer.  I too wanted the cancer out of me.  After my hysterectomy, it turned out to be stage 3.  My doctor believed he got it all but was not taking any chances.  I have finished chemo at the end of January 2013 and just finished radiation last week. 

I also longed for a child of my own.  I wanted to wait until I was married, but I have not found Mr. Right.  I sometimes cry myself to sleep at night because I do not have children of my own, but I do not regret my decision to wait.  All my decisions have made me who I am today; and I love who I am, what I have accomplished, and what I will accomplish.  I believe there is a reason why I do not have children.  I am meant for something, although I am not quite sure what that may be just yet.  Who knows, maybe I will open a home for run aways or be a foster parent.  The possobilities are endless. 

I have a very large family and many close friends.  A best friend moved in to help me thru this time.  I am so loved, but I feel very much alone.  They really do try to understand and are extremely supportive, but they are not in our shoes (thank God!).  I thought I was doing great over the last 7 months, but maybe I have been lonely because of the isolation of being home and not working or maybe it is because of forced menopause, or that I am not married or do not have children.  The women on this site have truly been wonderful and so supportive.  Maybe I will attend a support group.  I see my doctor next week and I will chat with him.  He has been sooo awesome!

You have every right to feel what you are feeling.  Don't let anyone tell you different.  Cancer is cancer and those words are devasting.  Any stage and type of cancer is serious business.  I feel a piece of my womanhood has been taken away and life has changed forever.  It was a wake up call for me to start really living my life and not concentrate so much on my career.  I now look at life in a whole new way.  A piece of me still worries that the cancer will return.  I learned that I cannot control that and I will not let it control my life.  I will cross that bridge if and when I get there.  I will continue with my check-ups while enjoying life.

I wish you peace of mind and good health.  Take care!

Nancy

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