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newly diagnosed

mmurcia2000
Posts: 27
Joined: Jun 2010

I was diagnosed with adenosarcoma as a result of a hysteroscopy to remove cysts in uterus to prepare me for IVf- or so I thought.

I am extremely angry and scared as you all well know. I feel like the carpet has been lifted from under me. I am 30 years old and was preparing to be a mother. I see the oncologist on thursday, but I know a hysterectomy is next.

I would appreciate any advice on how to cope and how to tell others about my diagnsosis.

nempark
Posts: 683
Joined: Apr 2010

My Darling: Please don't be angry and don't be scared. You are young, and will be able to fight the fight. Sometimes life really treats us unfair, but at some time or the other we have to face this adversities. Hold your head up high and don't be afraid to tell your friends. Remember there is a God our Creator. Pray to him to give you the strength and wisdom to cope with this dreaded disease. You will not imagine how much we can endure and how well we will heal. Just keep positive and don't be angry that will add more to your illness. Be well until I hear from you again. June

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

I'm glad you found us - this is a great place to learn, vent and find support in your journey. It must be devastating to learn that you will not bear children - but perhaps it might one day soften the blow somewhat that it doesn't mean you can not be a Mother. How to cope? I, myself, did not cope well in the beginning. I went through what I now recognize as the stages of grief: anger, sadness, disbelief - all of it. Slowly I began to realize that although I couldn't change my diagnosis, I could change my mind-set about it all. Eventually, I began to see that each day was a gift that I could use anyway I wanted. If I wanted to curl up in a ball and cry all day, it was ok to do that. If I chose to fight, I could do that and it was ok. And lo and behold, I found myself choosing more and more to fight (because I found it really felt better). The point is, allow yourself have all the feelings that are bubbling up now. All of your feelings are valid and there is no right or wrong in how you choose to cope. As far as telling others, I found that it was easier to tell those close to me and leave telling others til later (some of whom I didn't tell for a couple of years). Just know that some people will not know how to react. Reactions ran from"oh, I'm sure you'll be ok" to "maybe if you hadn't (fill in the blank) you wouldn't have to go through this" to people who took me in their arms and offered a shoulder, cried with me, then stood by me through it all. Try to not let the negative energy you may receive get under your skin. Hah, I've kind of gotten on a roll here; I hope you are able to glean at least a drop of helpful information here. Just know that you are now in the company of some wonderful people who are now sending a lot of positive energy your way.

Love,
Cecile

nempark
Posts: 683
Joined: Apr 2010

Good advice: Where is the cat?

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Great advice from Cecile..... Ditto from me!

I think it is true that we go through the various stages of grieving and some times we get through some of the stages faster than others. Just know that your feelings are YOURS and they are o.k.!

Karen

mmurcia2000
Posts: 27
Joined: Jun 2010

Thank you all for your encouragement. Today was a particularly hard day for me- I found enough strength to visit a friend and her new baby girl in the hospital only to have my husband bring up our situation in the middle of our visit. I am really struggling as I do not feel others are sensitive to how I am feeling. It took incredible strength to visit my friend in the hospital because I know that I will never experience this. My mother keeps ranting about all the things my sister in law will experience as she is also expecting. She also keeps telling me that she understands how I feel, but she doesnt.

I had a couple of good days this week,so I am grateful for them, but I am allowing myself to be emotional. I thinks its part of my process.

My hysterectomy is scheduled for this coming Wed, so things are happening fast which is good and bad. I am ready for my life to go back to normal, but I am not sure it ever will.

It brings me great comfort to know that there are others that understand.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending hugs....

First, no one truly understands what you are going thru unless they have walked in your shoes. People say things which try to make others feel better....so try not to judge them to harshly.

I too struggled with Infertility and did treatments for 5 years (4 failed IVF's). I know the pain and anguish of wanting to have children and how that gift seemed beyond reach.

My husband and I have two wonderful sons thru Adoption. I wonder ALOT whether all the Infertility meds I did prior contributed to my cancer...

Sending you prayers for your upcoming surgery. Please try to take this journey one step at at a time. Dealing with it any other way makes it seem so impossible...

Hang in and please keep us posted!

Laurie

mmurcia2000
Posts: 27
Joined: Jun 2010

Laurie,
I know this is some time away for me, but I wondered what type of medical clearance they require to pursue adoption once you have had a cancer diagnosis. I would think they need to know you are ok.

I am getting ahead of myself here, but would appreciate any suggestions of websites to learn more about adoption as well.

I have searched online but its hard to decipher what is accurate and what isnt.

Thanks.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

MMurcia,

The Adoption rules regarding medical clearance will vary depending upon the state you reside in as well as potentially the type of Adoption; Domestic vs. International.

For International Adoptions, each country has its own set of regulations. We adopted from South Korea and I remember it being 5 years of being declared NED for a diagnosis of Cancer.
Other countries may be less. It is definitely worth checking into!

If I can help, let me know :)

Laurie

donnaq8
Posts: 3
Joined: Jul 2010

I am thinking of you today and knowing what you are going through. I am praying for you. There is a website for hystersisters that is very helpful. However, you are going to have a radical hysterectomy and this differs from a routine hysterectomy. From the begining I wish someone had told me how useful the abdominal binder was. Please get one from the hospital and wear it every time you get up to walk. It will help you to feel the support you need. I still wear mine 2 and a half months after. You can put it directly against the skin and over the wound which may or may not have a dressing over it. The underpants can then be pulled over it. Do not be alarmed if you experience weight gain, this is normal after this type of surgery. Over time the weight will melt away because it is fluid.
Take Gas x every time you eat. You cannot over dose on it and it will help with comfort.
Take 2 not 1 colace twice a day. It is over the counter. Take a fiber drink like Mucelax or Activia. The pain to have a BM is extreemly shocking. This is the only thing that helps.
The reason I beleive is that you have had the omentum removed as well as the pelvic lymph nodes and the intestines are "getting resettled". It does settle after a couple of months but the above is something a nurse told me to do and it was only after that did I get the bowels under control to pass without the excrutiating pain.
The swelling in the legs is due to the lymph node removal. Keep your legs elevated when you when you sit. The lymph will redirect itself to other parts of the body it just takes time.
I cannot emphasis enough how important it is to eat well. Even if your appetite is poor.
An egg can be considered like medication. It has all the protein in it that you need.
The breathing is also important. Using the incentive spyrometer is essential to help you heal.
I know this is alot of information and it is just overwhelming. You must heal to be able to continue on your journey. I am confident with God's help you will succeed.
Let me know if you have any lingering pain that is not controlled with pain medication.

God Bless you
donnaq8

mmurcia2000
Posts: 27
Joined: Jun 2010

I wanted to thank you all for the advice and encouragement. I am 7 days post surgery and just received great news. I am cancer free. It appears that it was just in the uterus and caught early. I have no regrets to the total hysterectomy as it was the way to go.

I had the Da Vinci procedure so I just have 5 holes in my stomach and recovery is much faster than the traditional hysterectomy from what I hear.

I am extremely relived to have received such info.No chemo or radiation needed.

I was wondering what vitamins or supplements you all take on a daily basis. I am 30 years old,so the doc mentioned a low dose estrogen to prevent bone loss and deal with instant menopause.

Thanks ladies.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

What wonderful news you got after your hysterectomy. No treatments needed. That is great. Continue to take one day at a time and you will be feeling much better. Recovery is much quicker from the Da Vinci procedure. Good luck to you. In peace and caring.

donnaq8
Posts: 3
Joined: Jul 2010

I am thinking of you today and knowing what you are going through. I am praying for you. There is a website for hystersisters that is very helpful. However, you are going to have a radical hysterectomy and this differs from a routine hysterectomy. From the begining I wish someone had told me how useful the abdominal binder was. Please get one from the hospital and wear it every time you get up to walk. It will help you to feel the support you need. I still wear mine 2 and a half months after. You can put it directly against the skin and over the wound which may or may not have a dressing over it. The underpants can then be pulled over it. Do not be alarmed if you experience weight gain, this is normal after this type of surgery. Over time the weight will melt away because it is fluid.
Take Gas x every time you eat. You cannot over dose on it and it will help with comfort.
Take 2 not 1 colace twice a day. It is over the counter. Take a fiber drink like Mucelax or Activia. The pain to have a BM is extreemly shocking. This is the only thing that helps.
The reason I beleive is that you have had the omentum removed as well as the pelvic lymph nodes and the intestines are "getting resettled". It does settle after a couple of months but the above is something a nurse told me to do and it was only after that did I get the bowels under control to pass without the excrutiating pain.
The swelling in the legs is due to the lymph node removal. Keep your legs elevated when you when you sit. The lymph will redirect itself to other parts of the body it just takes time.
I cannot emphasis enough how important it is to eat well. Even if your appetite is poor.
An egg can be considered like medication. It has all the protein in it that you need.
The breathing is also important. Using the incentive spyrometer is essential to help you heal.
I know this is alot of information and it is just overwhelming. You must heal to be able to continue on your journey. I am confident with God's help you will succeed.
Let me know if you have any lingering pain that is not controlled with pain medication.

God Bless you
donnaq8

mmurcia2000
Posts: 27
Joined: Jun 2010

Thank you so much for all of this. Only someone who has gone through it can tell you what to really expect. I am fortunate enough to be having the surgery with a Da Vinci robot or arthroscopically, so I have been told that the recovery time is less. I guess we will see.

thanks so much again for thinking of me.

Mercy

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Was in the hospital only one day. Recovery is much quicker than an open hysterectomy. It is important to walk as soon as you can to help get rid of the gas. They pump carbon dioxide into you during surgery to help them visualize in the abdomen, so it takes a while to get rid of the gas. I felt bloated for weeks. I had minimal pain from the surgery. I did not need any pain pills at home. Good luck with your surgery.

donnaq8
Posts: 3
Joined: Jul 2010

I was also newly diagnosed with adenosarcoma of the uterus in April 2010 after a hysteroscopy. I know how difficult it is to be told. Do ask for a second and even third opinions of the pathology because there are different flavors of the tumor. The pathology drives your plan of care. I know when I was told the diagnosis I cried then became angry because this disrupted my life plan. After calming down I decided to tell everyone I knew that I had cancer and asked them for their support and prayers because I knew I could not do this journey alone. I felt it was my responsibility as a cancer patient to help my friends and relatives to feel comfortable around me. I adopted a positive attitude and asked for their help when necessary. I did have a radical hysterectomy within 2 weeks of diagnosis. I used a website for "Carepages" which is free. I asked help from family to enter information about the surgery and my progress after the fact. This reduced telephone calls and my family would read to me friends and relatives messages. These messages were extreemly uplifting and I thanked them for their prayers and kindness. It has been just 2 months since the surgery and I am feeling strong and back to my old self. I have had to alter my plan for life. I have had time and motivation to reflect on what is important in life. God has a plan for each of us and to borrow the phrase, "there is only one you". I am confident you will find your path.
God Bless you always as you begin your journey.

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Some women freeze some eggs to keep for later. Then they do IVF. You may still experience motherhood; adoption is a wonderful alternative. And you experience all the feelings of being a parent if you adopt.

I try to stay away from those that say hurtful things. I never know if they mean it (I always hope they don't) or if they are just inconsiderate. I have tried keeping silence; now I am more likely explain to people when they are inconsiderate. I could knock your socks off with some of the inconsiderate things people have said to me. The truth is I feel sorry for those type of people; they have missed the boat in life in their personal development.

I read about one fella who had hairry cell leukemia and was given two years (he lived 45 years). He said at work he could be concentrating and someone would get off the elevator and ask, "hey, how is your cancer?" He wrote a letter to all employees telling them that he did not care to discuss this at work and if they had questions they could call his wife. I thought that was very clever. It's not that your are denying your illness; sometimes you need a break from it.

Concentrate on your energies going to those who make you feel alive and happy. You will know them!

Diane

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